Isaiah's Journey

HOME ON THE SAME DAY...

2011-06-08T21:40:00.007-04:00

God heard your prayers and Isaiah did extremely well through the procedures/surgeries. This is the first time he recovered from general anesthesia without any episodes. Also, for the first time, we were able to come home on the same day!!! Yep, we can't believe it ourselves! All three procedures went well.

The ear tubes went in without complication and Isaiah had much less pain this time than the first time. Dr. Germiller was very happy with the results. Dr. Flick performed the upper endoscopy with biopsies. He said his esophagus/intestinal track looked healthy and normal. The only slight abnormality he saw was a puckered pyloris, but he doesn't know what that means yet. The next step is to wait a week before the final results from the biopsies come in.

Interventional Radiology, Dr. Keller, placed the GJ tube. He had trouble threading the tube because of Isaiah's abnormal intestinal structures. He is hoping Isaiah will tolerate this new tube. There is a chance this new tube is the wrong size---Isaiah fell in between the 2 sizes they use. Just our luck, huh!?!? Pray that with this new tube there will be no shifting, migration of the tube back into the stomach, leaking, vomiting, diarrhea, infection, or increased pain.

Thank you again for all your prayers, support, emails, notes, and meals. You encourage us more than you will ever know. You are all a part of our extended family. It's great to be loved this much.

SURGERY TOMORROW...

2011-06-07T22:01:00.004-04:00

Thank you for your continued prayers. Josiah went back to the doctor's office today. His right arm was reexamined and re-xrayed. Thankfully, the ulna bone has not shifted and Josiah DOES NOT need surgery at this time. He will continue with the hard cast for another 2 weeks, then be reexamined and recasted in a water-proof cast. Dr. Minnich was optimistic that Josiah's cast will be fully off by the time of our vacation on July 13th. Please continue praying for a quick and full recovery for Josiah.

Tomorrow, Wednesday, June 8th, Isaiah goes in for his 3 procedures. We have to be at CHOP Main (in Philadelphia) at 6 AM....ugh! We have to leave the house around 4:30am. Pray for safety as we drive that early in the morning. Also, please pray for Isaiah, the doctors/specialists, and that the procedures go smoothly.

This past weekend we were able to participate in Chris's sister's wedding (Amy) in Lancaster. My 3 men looked awesome! The boys did well and were adorable in their tuxes---will post pictures later. I do have to admit they were quite busy and were always running in opposite directions--pretty difficult when trying to take family pictures. Our friend, Jamie, came with us for the weekend and was a great help. Thanks Jamie!!!! Thanks for praying us through this past weekend.

We will update tomorrow, via the blog, on how Isaiah does through the surgeries. Continue to pray for us as we are quite often too exhausted to pray ourselves. We need the support of our brothers and sisters in Christ. God bless!

MORE THAN PRAYERS ARE NEEDED...

2011-06-03T21:20:00.007-04:00

Thank you all for your continued prayers and support. Right now things are incredibly stressful and I am especially struggling with God's goodness. Thankfully, Isaiah is doing better and has been gaining the lost weight back slowly, since his last hospitalization. We've had to adjust feeds and try new formulas. The doctors don't know why Isaiah cannot tolerate some feeds and can tolerate others. We've been working with a new nutritionist and new GI specialists. Hopefully, they will be able to find a reason for Isaiah's chronic vomiting.

On Wednesday, Isaiah will be having his 6th surgery. He is having 3 procedures done: ear tubes replaced, upper endoscopy with biopsies, and having his G-tube changed to a JG-tube. Isaiah's original ear tubes no longer function (one is out and the other clogged). Fluid is collecting behind the tympanic membranes and he has had multiple ear infections with hearing loss. The endoscopy is to check for damage from all the vomiting. The changing of his G-tube is for a diagnositic study--the JG-tube should only be in for 4 weeks. The JG-tube bypasses the stomach and the feeds go directly into the intestines. If Isaiah stops vomiting completely, then it means that the source of the vomiting is from the stomach and he will need additional surgery on the stomach for the Nissen Fundoplication.

Just today, God decided to push us again. Josiah decided to climb a table outside that we are constantly telling the boys to get off of. Well, he fell breaking the ulna bone of the right arm. Thankfully, he was able to be casted in the ER and he doesn't need immediate surgery. He will be rechecked Tuesday. If the bone has shifted, he will need corrective surgery.

We have an incredibly packed summer and we are just so overwhelmed with all the trials. Please pray for this weekend: Chris's youngest sister is getting married and both the boys and Chris are in it---kinda tough with a cast and tube feeds. Then, surgery for Isaiah on June 8th, MRI of brain/spine with general anesthesia on June 29th. Also, it looks like Josiah will need surgery to remove his adenoids---they are enlarged and he has been having trouble breathing, pain in his sinuses, and snoring for the past year. Finally, it has been exhausting with all the trips back down to CHOP. Pray for strength, safety, and grace.

Please pass on to friends and family. We need all the help we can get. Thanks!

Home Again

2011-04-26T22:18:00.002-04:00

Hi everyone,

We just wanted to send a quick post to say Isaiah is home. Joy brought him home last Wednesday(4/20) around noon. He was doing well with his feeds and was re hydrated, so the doctors felt he was ready to be discharged. Since he's been discharged, he's hardly thrown up during the last few nights. This has been a blessing.

Unfortunately Joy caught some kind of bug and was bed ridden starting Thursday night into Friday. This is why you have not heard from us until now.

We wanted to express our gratitude to everyone who helped provide meals, those who sent encouraging emails and most of all prayed for us and our little boy. We always feel blown away by the number of people who want to help us in this journey.

Chris and Joy

Apparently Isaiah misses his doctors and nurses....

2011-04-17T10:11:00.006-04:00

....and feels it's time for another visit.

Hello everyone,

I know it's been a while since we posted an update on Isaiah. We will try to send an update later which will bring you to where we are today, since our last post was on Oct 21, 2010. Unfortunately this update is not a pleasant one.

Earlier this week Isaiah started with a fever and increased vomiting. He was still throwing up nightly prior to getting sick but lately it has increased to a few times over the night and sometimes during the day. He has not been able to keep hardly any food down and has had decreased urine output. He possibly has C-diff again and he has abdomen pain and restlessness while sleeping. He has lost 1.5 lbs in 2 days and therefore we are back down at Children's Hospital of Philadelphia (CHOP).

Chris took him down Saturday afternoon to the ER. Later that night Isaiah was admitted. They are currently giving him just IV fluids to reverse the dehydration and are talking about slowly introducing tube feeds sometime on Sunday afternoon to see if he can start keeping anything down.

We are asking if you can start praying for our little boy again. We don't know how long he will be down at CHOP right now. Probably as soon as he can tolerate nightly feedings again.

Our primary focus is for Isaiah to get better. On a side note, we were scheduled for a bunch of CHOP doctor visits the next couple of weeks. Hopefully some of the doctors that are following him can see him while Isaiah is admitted which will make for less visits the next couple of weeks.

Thank you in advance for your prayers to our Mighty, Loving, and Gracious God on our behalf. Through him all things are possible.

Chris and Joy

Funeral Arrangements for Vera Lael Emr

2011-02-14T21:06:00.003-05:00

The funeral will be held on Saturday February 19th at Bethel Baptist Church 754 E. Rockhill Road Sellersville, PA 18960

Visitation begins at 10am
Service begins at 11:30am

February 11

2011-02-12T02:06:00.004-05:00

It is with great sorrow that I write this to you all. Our dear Vera Lael went to be with our Lord Jesus in heaven at 11:15pm on Friday February 11, 2011. Both David and I were with her. As our Pastor shared with us she is better off than any of us. She will not deal with bitterness or anger or sorrow. Her eyes first opened to behold our Lord. We all will struggle to understand these events: A passage I must cling to is Psalm 139. Wherever we are God is there; He knows our future and our past; He has our days numbered before we are born. Understanding His plan is difficult and surely we will mourn for our Vera the rest of our lives. Please pray that as Jesus has healed Vera in her heavenly body so He will heal our hearts.

PRECIOUS MOMENTS - corrected version

2011-02-10T18:35:00.004-05:00

David and Lori really appreciate all the love, support, gifts, letters, emails, and prayers. They really feel God working in their lives. Lori continues to get stronger every day. David and Lori have been staying at the Philadelphia Ronald McDonald House, which has been a real blessing. Elie, Micah, and Hudson have continued to stay together (after the Pedersen's left) with Lori's mom, then brother JJ, and now sister Gail. Vera's condition remains the same; continue to plead with God for His miraculous healing. Her brothers and sister have been able to visit her and kiss her. They recently had a wonderful time together as a family. Dave and Lori have been able to hold Vera since last Wed/Thurs. It was so sweet and precious to see mommy hold her beautiful baby. Enjoy the pictures my brother Dan was able to take of Vera and her family. 1. Vera in her Valentine's dress--pretty as a princess 2. The whole family together---a God-given miracle 3. Family Hug 4. A Mommy's kiss has healing powers 5. Micah giving daddy a kiss to pass on to Vera 6. Hudson giving little sister a kiss



Continue to hold them up in prayer. Our whole family has felt God working in ways we would not have expected or anticipated. "His ways are not our ways" (Isaiah 55:8), has taken on a whole new meaning. David shared with me to look up Psalms 115--over and over it says, "Trust in the Lord; He is their help and their shield." It also talks about God's blessings to His children. There are great promises and instructions in this passage. Take time to read it and dwell on it. God is good all the time--take the time to see it.

IN GOD'S HANDS...

2011-02-03T23:54:00.000-05:00

Two evenings ago a conference at Jefferson took place with Vera's doctors and nurses. The reports from the MRI and EEG were in. Quietly, David entered the room. The tension was palpable. Lori was called and put on speaker phone so she could be part of the conference. Dr. Solarin, neonatologist, began. He gently told daddy and mommy that Vera's tests did not come back as everyone had hoped. Dr. Brill, neurologist, stated that the MRI showed that a large amount of fluid had collected (hydrocephalus) and was putting pressure on parts of the brain, actually moving sections into different areas (herniation). The EEG showed minimal electrical activity from the cerebral hemispheres. The neurologist stated that there is some brain swelling as well as significant brain damage in a large part of her brain, but she is NOT brain dead. Vera still has some reflexes. What they believe Vera has is HIE, Hypoxic Ischemic Encephalopathy. They do NOT know when the injury occurred.

A few encouraging things that the doctors said were: 1)that some of the swelling that Vera experienced MAY go down after day 5. The docs said when there's damage to the brain, the swelling peaks between days 3-5 and then starts to go down; 2)They also said that the cooling therapy went well and 3)Vera's heart and all other organs appear unaffected by any damage. 4)The best news was that they all admitted that they have been wrong before. These are pieces of HOPE that we are holding onto.

The most amazing part of this meeting was David's testimony to power of God that we cannot comprehend. He asked each person in the room, "Can you fix Vera? Can you heal her or change anything?" Each doctor, nurse, practitioner, manager, and fellow said, "No." He then proceeded to share from the Bible how God is sovereign and has brought us all to this point, to this gathering. David prayed for Lori, for Vera, and for the group that they would all go forward seeking God's face; that God would move and perform a miracle in Vera's body; that God would show us all the impossible, Matthew 19:26. It was a bittersweet prayer that affected many in the room---tears were shed.

The conference was held by man and conducted by man. However, what man failed to acknowledge was that we were "surrounded by a great a cloud of witness (Hebrews 12:1)", that the Great Physician was in control, watching. He was waiting to see and hear the testimony of His child, to see how His child reacted when faced with an impossible situation, to see faith flourish. It was awesome.

When daddy and auntie went back to Vera's room, scripture was read and specific praying took place. The passage from Matthew 17:14-21 reminded us that sometimes God does the healing only after we have taken the time to fast, pray, and beg for His intervention. Also, we were reminded that as children of God, we war against the powers of Satan, we fight not against flesh and blood, Ephesians 6:11-19. Vera reminded us to ask God specifically to bind the powers of Satan and his followers and claim Christ's sacrificial blood to cover and protect Vera. She belongs to God and He is holding her. We must challenge ourselves to commit to fasting and praying (Joel 2:12-13) to allow Christ victory over the impossible--to heal Vera. Please open your hearts to God's leading. Allow Him to transform your life as He is transforming Dave's and Lori's lives.

Lori was discharged yesterday and was able to see and touch Vera for the first time. Praise God for reuniting mommy and precious baby. Dave and Lori have some tough days ahead of them. They will come up against some difficult decisions. Pray that God gives them clear direction. Vera's story is NOT done yet. Christ is still writing. Lord, help us NOT jump ahead of Your leading, of Your timing. Guide us through the "Valley of the shadow of Death" Psalm 23. Thank you for what You are going to do. Forgive our unbelief; help us to believe (Mark 9:24). We place everything into Your hands, just as we are instructed to in Psalm 55:22, “Cast thy burdens upon the LORD, and He shall sustain thee: He shall never suffer the righteous to be moved." Amen.

We encourage all of you to take time to look up the Bible passages that are listed in each of the updates. God's power comes through His Word. How can we know it if we don't read about it or investigate it.

PICTURES OF VERA...

2011-01-31T19:44:00.017-05:00

A couple of things I forgot: Lori has been out of ICU since Sunday, and is in the PNU now at Lehigh. She is eating, up walking, and is feeling better. Hopefully, she will be discharged in the next couple of days. Vera is still on the breathing tube with 31% oxygen, and is at times breathing over the vent. This is another encouraging sign. Also, I can only update when I get home at night. I cannot get WiFi at Lehigh and the computer at Jefferson does not work. I am sorry I can't get updates to you earlier. I am doing my best. Here are a few photos of Vera: 1. Vera with the cooling cap on---her body was cooled through her head. 2. Elianna holding Vera's hand 3. Daddy, Elie, and Vera spending quiet time together 4. Aunt Joy praying for Vera 5. Daddy praying over Vera and holding hands 6. Praying hands 7. 1st day without the cooling cap--FREEDOM!! Now you can see my dark hair 8. My nurses take good care of me 9. Dear Jesus, Thank you for making me perfect in You. Use me for Your glory. Thank you for my mommy and daddy and for all the love they give to me. Please tell my mommy, daddy, Elie, Micah, and Hudson I love them very much and can't wait to be with them. Comfort them in Your arms as you have comforted me. Thank you for gently rocking me to sleep each night. I love you, Amen.

HOPE---He Offers Peace Exceedingly!!!!!

2011-01-31T17:38:00.003-05:00

I got home from visiting Vera around 5:30pm. I was able to spend some quiet time with David and share with him the acronym for HOPE that God gave me a while back----HE OFFERS PEACE EXCEEDINGLY!!!! Hope is a special gift God gives His children. It allows the freedom to rest. I know this has lifted my heart when I needed it most. Dave said he has been encouraged by the positive words people keep sending to him. He is really depending on the strength of others as he walks this journey. Lori was visited by Pastor Campbell, Stephanie (sister-in-law), Dave and her mom today. I know she is so thankful for everyone's love and support. My mom visited Vera one last time before she headed back to TN today.

Vera's cooling process ended early this morning, and she was officially warmed up by 8:15am. It was nice to see her whole face/head. She looks like she has dark, curly hair. But, the curls could have been from all the goop that was in her hair;) Either way, she was very cute. Today, her heart was strong and stable, she is still tolerating the lowering of oxygen on her vent (down to 31% from 40%), and her urine output is normal. Her pupils are sluggish, but reacting. All good and encouraging signs. Our little Vera is fighting--we need to keep praying for her strength!!!

When I left today, the nurses were taking Vera down to have a MRI done. Later she was to have a 12 lead EEG. Her doctor said this will give them a better idea of how Vera's brain is doing. Still, the tests are NOT conclusive and there is a waiting period. So, we continue to wait for the GREAT PHYSICIAN to "do His will and His great pleasure," Ephesians 1:3-14.

Just to clarify, Lisa Bergey is coordinating meals and collecting gift cards (such as: Giant, Walmart, Target, Redner's, VISA, WAWA, gas cards, or cards for a local eatery) from people at Bethel Baptist Church (754 East Rockhill Rd., Sellersville, PA 18960). For those who don't go to Bethel, you can either send gift cards to me or send a gift in C/O Bethel Baptist for David and Lori. We will make sure all gifts get to them. Thank you for your continued prayers and help with everything. We love you all!

STANDING IN THE GAP...

2011-01-31T03:49:00.004-05:00

My Dear Brothers and Sisters,
It is time to storm heaven's gates with prayers of true faith that GOD IS THE GOD of impossibilities, the God who moves mountains for faith the size of a mustard seed (Matthew 17:19-21). It is time to prove to Satan once again that we as Christians believe God's Word, that God will give us our hearts desires. Psalm 21:1-2, "...You give victory. For you have given him his heart's desire; You had not withheld the request of his lips, Selah (pause, reflect on these things)." God is looking for soldiers to "STAND IN THE GAP"(Ezekial 22:30) and make a protective hedge around Vera and her family!!! I firmly believe this.

God woke me this morning at 3:30am when Satan's strength is strongest to pray like I have never prayed before, to awaken a faith in me that I haven't had in a long time, to stand in the gap. David told me yesterday, "I just need someone to believe that Vera is going to get better." David was that person for me when I was pregnant with Isaiah. I did NOT believe Isaiah would live, would love, would change the world around him. David did. He sought God diligently when I could not. He upheld me when I no longer wanted to go on. He was so positive, when all medical personnel were negative. I have decided that it is my turn to do that for David and Lori. I do believe God will heal Vera, that she will be here to love, laugh, and change the world. Please stand with me; intercede on behalf of Vera, on behalf of David and Lori, on behalf of Elianna, Micah, and Hudson; don't let Satan destroy our faith--"For we are more than CONQUERORS through HIM that loved us. For I am CONVINCED that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord," Romans 8:37-39.

So often we quote the Bible to comfort one another, but we really don't believe it. I know for me, I often have head knowledge, not heart knowledge. God's promises are worthless if we don't believe that WHAT HE SAYS IS TRUE. "For with God all things are possible," (Philippians 1:27). God is a "rewarder of those who diligently seek Him," but we need to believe that HE IS. For FAITH is the substance (confidence) of things hoped for, the evidence of things not seen," (Hebrews 11:1, 6). We are called to "walk by faith, not by sight," II Corinthians 5:7. This goes against everything we've been taught--trust what you can see. Since our world is corrupted by sin, what we see is corrupted by sin. Clarity only comes from faith, through trusting in Jesus Christ alone for our salvation; then and only then can we walk by faith and look clearly through the eyes of Jesus.

Stand strong with me. Uplift the requests of David's and Lori's hearts as you have never done before for someone. God will grant us anything we ask in Jesus name--"And I will do whatever you ask in my name, so that the Father may be glorified in the Son," John 14:13. God chose us for this task of interceding, being faithful,having HOPE. "You did not choose me, but I [God] chose you and appointed you so that you might go and bear fruit—fruit that will last—so that whatever you ask in my name the Father will give you," John 15:16.

Dear Lord,
Awaken my heart, for it was dead, not having the faith I once had. I have sinned against you by not obeying your commands, by not trusting in Your WORD. Please forgive me, please forgive my unbelief. Give me the strength to rise above adversity. Lord, I beg you to touch the body of my precious, little niece Vera. She is not done. I know this without a shadow of a doubt--her life is just beginning. Her ministry is to reach world-wide. Her miracle will give testament once again to Your AWESOME KNOWLEDGE, POWER, PRESENCE, LOVE, HOPE, and GRACE. Teach me the errors of my ways. Teach me to dive into the Scriptures when I am weak. Help me to always believe you can perform miracles and You want to if I just ask. Thank you for awakening the deadness in my soul. Thank you for making me realize your love to me, to my family, to everyone around me. Help me not to doubt again, but if I do, please gently nudge me back into the right direction. Thank you for Vera, for the blessing she is to me, for her helping me see who You really are---YOU ARE FAITHFUL!!!!!!
I love you, Lord. Use me as you see fit.
I ask all these things in the name and power of Jesus Christ my Lord and Saviour. Amen

BEAUTIFUL VERA

2011-01-30T00:38:00.002-05:00

Yesterday (Saturday), I was privileged to drive my brother, Dave, and my sweet niece, Elianna down to Jefferson to see Vera. Elianna was very excited to see her new little sister. Dave and Elie were able to hold Vera's hand and talk to her. Elie had made some drawings that was placed on Vera's bed. I asked Elie what her favorite thing was about meeting Vera today. She said, "Seeing my sister."

Dave and I had a special time praying over Vera and talking to her. She is beautiful and looks a lot like Micah. We told her how much everyone loves her and is praying for her, especially her mommy. There was not much change in her condition yesterday. She is still tolerating the lower oxygen saturation that is being delivered to her, and is starting to breathe a little above the ventilator settings. The doctors have also been able to go down ever-so-slightly on her blood pressure medication (Dopamine). She will remain on the cooling system until late Sunday night/early Monday morning. The doctors really won't know how Vera truly is until she finishes the cooling treatments and her body warms back up. We are praying for a miracle that God will reset and restore her little body. The hardest thing right now is waiting.

Dave was able to take up some pictures of Vera to Lori today. Lori continues to physically get stronger, but her heart is aching for her baby. Please, PLEASE pray that Lori will stabilize enough to be able to be transferred down to Jefferson. Right now Lori has her mom and sister, Gail, to help encourage her heart. Pray for a sweet time of strengthening for all of them.

Again, thank you for everything. The family really feels all of your prayers.

I don't usually so this, but I wanted to share with you a specific prayer sent yesterday to God for Vera from a friend in Christ. It encouraged my heart as well as helped me realize again God's almighty power. This is also my prayer; may it be the genuine prayer of all our hearts:

"Father, we come before You with the greatest sense of urgency today. Lord, we know You are aware of this crisis occurring in the life of this young family. We know You are in control in spite of the frightening circumstances. You tell us to pray always for all things with thanksgiving and that Your peace will keep our hearts. Although Lori and Vera are in a threatening situation, Father we thank You that You are already addressing the needs. We know that even before our words are spoken, You are answering our prayers. Lord, we pray, in the name of Jesus, that You extend Your hand to both Lori and her baby, Vera. Deliver them from the health emergency that engulfs them. Send an army of Your angels , Lord, to minister to them in all ways. Touch their bodies with Your all powerful hand. Bring miraculous healing to them both. Let their recovery be an astonishment to the doctors and a revealing of Your might so that You may be glorified. We beg for mercy for them. We know, Lord, that anything is possible with You and that there is nothing too difficult for You. Give Dave confidence in You and in Your love. Lord, We believe that Your thoughts are for good not for evil for Lori and Vera, to give them a future and a hope. We pray for a future for both mother and child. Bless them beyond what we can ask for or imagine.
In Jesus' name, Amen"

Friday, January 28 (10:53pm)--LORI/VERA UPDATE

2011-01-28T22:57:00.004-05:00

I have been staying with Lori since around 4pm. David was with her earlier today. She is doing much better. She was extubated around 4:15 and has been breathing on her own with a little assistance from oxygen. She is starting to remember what happened yesterday into today. It has been really difficult for her because she has not seen or held Vera yet. We have pictures of Vera and taped one to Lori’s bed for her to look at. She was able to talk to Vera on the phone; Dave held the phone up to Vera’s ear. For those of you that don’t know, Vera Lael means “Faith belonging to God.” What a powerful reminder that everyone and everything belongs to God and our job is to have faith. This is very hard for Dave and Lori to take to heart right now. Faith doesn’t always come easy in the face of dark adversity. We need to uphold them, and make our faith strong when theirs is weak, “Two are better than one. For when one falls down, the other picks him up," Ephesians 4:9-10.

As much as I have struggled to be on our journey with Isaiah, God has used Isaiah’s journey in a way none of us would have expected. One, the blog is established with almost everyone’s email address so I can easily update you. Two, I can relate and I can help in ways I wouldn’t have been able to had I not walked the path God chose for us. I told Lori, “God works in very mysterious ways that we can’t even begin to comprehend.”

Dave said Vera is a little stronger today. She is using less oxygen and still maintaining a high saturation, 97-99%. This is very exciting. She still has a very long way to go, but we rejoice in these small steps. She will remain on the breathing tube for awhile and continue the cooling treatment. Lori’s sister, Gail, flew this afternoon from Colorado and was able to spend several hours with Vera down at Jefferson. My mom is on her way up to stay at Vera’s side, and Lori's mom gets here tomorrow night. We are doing our best to make sure the girls are never alone. We are truly blessed to be surrounded by such supportive family and friends.

Another small miracle--Lori had worked out a schedule with friends of ours, Pete and Marge Pedersen, to come up to PA from SC, to stay the week with us. We have enjoyed visiting with them and catching up. Little did we know that God brought them up at the exact time we would all need them. They are staying at Dave’s and Lori’s house to watch the kids. This allows Elianna, Micah, and Hudson some normalcy. Praise God for His foresight. Also, because of what we went through with Isaiah, Chris’s work has tremendously understood our family’s situation and has allowed him to work from home. This allows me to assist Dave, Lori, and Vera in any way they need.

Thank you for all your prayers, phone calls, emails, and texts. Dave and Lori have felt them. I will continue to do my best to keep you all updated. One way you can assist Dave and Lori is to give gas, grocery, or restaurant gift cards. There is going to be a lot of traveling back and forth between home, Lehigh, and Jefferson. If you are interested, please contact me via email or text.

Again, please pass this along to whomever may not have this blog address.

URGENT REQUEST FOR MY NIECE, VERA, AND MY SISTER-IN-LAW, LORI

2011-01-28T12:35:00.002-05:00

Dear Friends,

I am asking you to please immediately stop and pray for Lori and baby Vera. Lori had a C-section that did not go as planned. What started out as a normal C-section, turned into a very emergent situation. Lori lost a lot of blood because the uterus tore in several places; the docs had to replace her blood twice over. She has been in the OR at Lehigh Valley Hospital from 10pm (1/27) til now 4:20am (1/28). When I left the hospital at 4:20am, the OR team was just finishing up. I was not able to see Lori or the baby. Right now, Lori will remain intubated for the next couple of days, and in the ICU. The doctor said she is not out of the woods, she is still critical, and has a long road to recovery.

Baby Vera is also having difficulties. She was born around 10pm, weighing 6lbs, 14 oz. Somewhere in the process of removing the baby, she lost oxygen. She was born blue and flaccid and needed resuscitative measures. She pinked up and her heart rate became strong, but she remained unresponsive and could not breathe on her own. Vera was medivaced via helicopter to Jefferson Hospital in Philadephia for a cooling process. The docs are hoping that by placing Vera's brain and body in a slightly hyperthermic state, that her little body will reset. She is responding to pain, but her pupils are still not dilating. Vera is also considered critical.

Dave is in a state of shock and is not quite sure how to handle all of this. He's torn as to which place to be, with his wife or with the baby. Please do not bombard him with phone calls, but call, text, or email me instead. Pray for guidance as we try to help him through all of this.

Please pray fervently. Please beg God as you did once for my Isaiah for a miracle. Please pass this on to whomever you now. We need to be banging down heaven's doors with our petitions. I will update as I know more.

Thank you. In Christ's arms, Joy Miller

UPDATE FOR TODAY (1/28 at 1:00pm):
Lori is doing better. Her blood work, urine output, and vitals signs are strong and look good. When the nurses lighten her sedation, Lori is fighting against the breathing tube, which is a good sign (she knows it's there). Dave also feels she has responded to him through hand squeezes and signs.

Vera, however, is not doing as well as the doctors wanted. She has little brain activity and her pupils remain unreactive. She is still intubated and in critical condition. They have her doing the cooling treatment and will be on it for 72 hours.

I am heading up to them right now. Lori's sister is arriving today. Please continue to pray fervently for them. Thank you.

"When there's a gap between God's way and wisdom and my understanding of God's way, I must fill the gap with trust."

Deuteronomy 31:8--And the Lord, He it is that doth go before thee; He will be with thee, He will not fail thee, neither forsake thee: fear not, neither be dismayed."

FUNDRAISER WAS AWESOME--THANK YOU!!!

2010-10-21T15:26:00.006-04:00

We had an awesome turnout two Saturdays ago for Isaiah's fundraiser. A HUGE thank you to Holly Boykin for organizing everything. Thank you to all who came and gave generously from your hearts. We cannot even begin to express our gratitude. We also had a huge miracle happen when several families stepped forward and provided a new washer/dryer for us. God has been so good to us and continues to provide for us even when we are not faithful in asking for His help. We continue to walk this journey with the strength from your prayers.

We were recently back down at CHOP Main for several appointments. Pulmonary was satisfied with Isaiah's improvement, but will continue to monitor him for awhile. We saw another orthopaedic specialist, Dr. Lee, about Isaiah's left arm. He was incredibly supportive and understanding and wished he could give us better news. But, the reality is there is nothing he can do to improve the left arm. It is what it is, and he was very happy with how Isaiah uses it. Pray that as Isaiah continues to grow, that we will know how to encourage him to use his differences for the glory of God.

We also revisited the feeding clinic. I think this will be the last time we go down there for the clinic. They were not much help and pretty much shrugged their shoulders because they have no idea why Isaiah doesn't eat or why he throws up daily. It was a very frustrating meeting. We are going to look into some other feeding clinics, like Good Shepherd and Hershey. Please pray for wisdom as we choose.

At the moment we have a need for help on Tuesday mornings. I go to a women's Bible study every Tuesday morning. We are entering flu season and we don't want to expose the boys to any more germs than we have too. The times would be from 8:30am-12pm. The boys are very easy and Isaiah does NOT have to be hooked up to anything while I am gone. Please let me know if anyone can help.

I know some of you may still be interested in ordering from 31 Gifts to support Isaiah's fundraiser. Holly Boykin will still be taking orders until the end of the month. All of her profits she is donating to Isaiah. To place an order, you can go online to her website at www.mythirtyone.com/hollyb, or you can call her directly at 267-375-9171. Thank you again for all of your help and support.

FUNDRAISER--RECYCLE YOUR OLD GOLD & SILVER

2010-10-10T20:09:00.007-04:00

Dear Friends and Family,

You are invited to a Gold & Silver Recycling Event!! Our dear friend, Holly Boykin, decided out of the goodness and kindness of her heart to give a wonderful gift to Isaiah. She is doing a fundraiser to help with costs that we keep accruing with Isaiah. We cannot thank Holly enough for the love she has shown to our family.

THIS IS WHAT HOLLY'S FLYER/INVITATION STATES:
HOW DOES IT WORK? Bring your unwanted gold, silver, or platinum, (any amount, any color, any karat) and a licensed gold buyer will evaluate each piece for karat quality. It does not matter if the jewelry or items are broken. The value of your metal is determined by overall metal content and weight. There is no pressure and no obligation. If you are content with the appraisal, you will be paid on the spot! At the end of the event, the gold buyer will be donating a percentage of the payouts to the Miller Family.

There will also be a Thirty-One Gifts vendor set-up at the fundraiser. 100% of the commissions will be donated to The Miller Family. For more information, please visit www.mythirtyone.com/hollyb.

WHEN IS IT: Saturday, October 16, 2010 from 9:00 AM-1:00 PM
WHERE IS IT: Mr. B’s Coffeehouse – Rm 218, 820 Route 113 Souderton, PA, 18964. Mr. B's is on the backside of Calvary Church of Souderton. Please contact Holly Boykin at 267-375-9171 with any questions regarding this fundraiser, or if you can’t attend but would like to donate jewelry or gift cards.

Holly will be holding a *RAFFLE*. For every gift card that you bring for The Miller family (gas, grocery, supercenter, etc.) you will be entered into a raffle for some great prizes!

Hope you all can come!

Chris, Joy, Josiah, and Isaiah Miller
For the actual flyer, email us at isaiahsjourney@yahoo.com, and I will send you the link. I was unable to put the actual flyer on the blog.

P.S. If you have any friends, family, or businesses that would like to support Isaiah, please print and pass the flyer along to them, once I send it to you. We are trying to post the flyer wherever we can. Also, feel free to forward the blog on to whomever may be interested. Thank you.

HE'S WALKING...

2010-10-05T20:20:00.010-04:00

It's been awhile since I've had the chance to update. Sorry about that! Well, just to quickly let you know what's been going on---Isaiah started cruising furniture around 15 months and then took off walking after he received his foot braces in July. He's been running ever since, at least trying to! He loves chasing his older brother and torturing him. He is a very busy little boy with a bigger than life personality!

Unfortunately, Isaiah continues to refuse to eat and rarely drinks. He is on tube feeds 3 times a day. He also continues to throw up daily. Chris and I don't get much sleep and often end up with much more work than we would like. The doctors have no idea why he continues to throw up like this. He is already on medications for reflux. The current doctors suggest that we see go see an allergist as well as a GI motility specialist. We also have to decide soon whether or not we are going to take Isaiah to an intense feeding clinic to help retrain him to eat. We have 2 options, neither of which are easy or inexpensive. Please pray that we have the wisdom to pick the right program for Isaiah.

Right now, we have 3 pressing needs:
1) Our washer and dryer are struggling to keep up with the insane amount of laundry we have to do on a daily basis because of Isaiah's vomiting. Our dryer is rusting on the inside, causing rust stains on clothing. Then, our washing machine broke on Monday, but Chris thinks he will be able to fix it temporarily. However, we are in great need of a heavy duty clothes washer and dryer.
2) We need to figure out how to address Isaiah's eating issues. We don't know what to do and not sure which clinic to take him to. They both require alot of time, commitment, and money.
3) We need home care for Isaiah to be approved for 16 hours a week. I am going to a job fair on October 19 and hope to enter back into the nursing work force. Pray that I know how to coordinate Isaiah's schedule and what nursing job to accept. I need something that will be flexible and understanding with our situation. We would also love to put Josiah into preschool, but not sure how to do this at this time.

Please keep your eyes open for information regarding an upcoming fundraiser for Isaiah on Saturday, October 16, 2010. It will be held at Calvary of Souderton, room 218 off of Mr. B's, from 9am-1pm. Look forward to seeing you there.

Thank you for all your love and support. Please enjoy the video below. (You will need to go to the blog website to see the video) http://isaiahs-journey.blogspot.com

18 MONTHS TODAY!!!!!! CAN YOU BELIEVE IT?!?!

2010-08-20T23:04:00.004-04:00

Isaiah is growing quite quickly into a little man, and has a bigger than life personality! He already knows how to work the crowd, especially the ladies!) He is very funny, likes to make us laugh, likes to torture his older brother. It's never a dull moment around here!

Quick update on his G-tube: We were at CHOP Main 3 times this past week to have his site examined. There is a sore at the surgical site that is starting to tunnel down into where the tube enters the stomach. It is draining, and the doctor had it swabbed for any bacterial infection. It also has granulation tissue growing, which is similar to scar tissue that inhibits healing. Thankfully, the culture came back with a mild bacterial overgrowth that is NOT serious enough for oral antibiotics. We are able to treat the mild infection topically with an antibiotic ointment. Plus, the doctor was able to cauterize the granulation growth. So, now he is hopefully on the mend. We go back to see Dr. Collins on Sept. 1st for another evaluation. She'll determine at that time if she needs to change out the whole tube.

Thank you for continuing to pray, providing meals, sending words of encouragement, and helping out in other ways. We could not have made it through all of this without you!

QUICK UPDATE...

2010-08-13T13:38:00.003-04:00

Isaiah is having trouble with his G-tube site. He now has an ulcerated area around the surgical site. This is causing him additional pain. Every time we hook up his feeds (which is 3 times a day) it rubs against the open area. It's really hard to allow the area rest, and to keep it dry and clean when we have to use it daily. We now have to travel down to CHOP on a weekly basis to see his general surgeon, Dr. Collins. This is adding a lot of additional stress to all of us. Please pray that this sore heals and that it won't become worse.

Isaiah is also still having a lot of trouble eating and drinking. He's at the point he doesn't even want to try. Dr. Collins seems to think that after a couple of weeks, he'll want to try eating again. He continues to throw up every night, and we are dealing with constipation and bloating. Chris and I are tired, and I'm sorry this note doesn't contain good news. This is just our reality right now.

We need an extra dose of grace and energy right now from God. We know what God promises in His Word, but we really need to believe it and rely on it. Pray that not only will Isaiah quickly be healed, but that we will make these following verses our own: "Three times I pleaded with the Lord to take this away from me. But He said to me, My grace is sufficient for you, for my power is made perfect in weakness. Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong," 2 Corinthians 12:8-10. Thank you.

HOME SWEET HOME!!!!!!

2010-08-08T20:49:00.003-04:00

We made it safely home late Sunday afternoon from CHOP. We are doing really well, just tired. We were supposed to come home Saturday, but Isaiah still had not pooped and we were having trouble with his G-Tube site. It was leaking and no one was sure why. Finally, we determined that the one extension set was cracked and the other one was loose. Once we exchanged out the sets, the G-tube stopped leaking. Then after Isaiah pooped, we were given the green light to go home. He is still not eating by mouth and continues to throw up often. It's incredibly frustrating, but there are worse things. We just have to learn to focus on the positive. We are hoping that after this surgery Isaiah will eventually learn to eat and tolerate food. Please continue to pray for this with us.

Isaiah was a favorite amongst the nurses. Many times we would find him at the nurse's station flirting away, giving the 'Surprise Face', helping out with their charts, or he'd be down in the play room entertaining other patients. He is quite a character and has made many of them laugh. Daily, nurses would come into his room for a hug/smile/kiss/or a surprise face---It's something Isaiah likes to do to make people smile or laugh.

Josiah came home at about 6pm on Sunday night. It's always a wonderful feeling when you've been separated from your child, and they come running into you with lots of hugs and kisses! We are so glad to be back together as a family. Thank you for praying for all of us. Thanks to the Ekstrom and Miller families for watching Josiah this past week, and thanks to those who have been providing meals. You've been an incredible help and have alleviated a lot of stress and extra work.

HEALING NICELY...

2010-08-05T16:02:00.004-04:00

God has been faithful and little Isaiah is doing well. Dr. Collins was very pleased with how Isaiah did during the G-tube placement. She was able to place the tube without difficulty. Dr. Collins said she was able to examine the duodenal surgical site (from when he was 6 days old), and it looked great. There was only one adhesion that she had to cut through.

Isaiah had a tough time recovering from anesthesia again, but we were prepared for that. The biggest problem Isaiah encountered was pain management. He was in excruciating pain post-op, and it took about 4 hours until his pain was under control. It was heart-wrenching to see him in agonizing pain and not be able to do anything about it.

Today, Isaiah has been out of bed (in a wagon) and has been playing in the game room. He is still having pain, but it is easily controlled. They started giving him some formula through his G-tube (about 2oz.), and he was able to tolerate it without difficulty. Tonight, they will give a larger amount of formula through a continuous feed into the G-tube. He will probably be discharged on Saturday if all goes well.

We finally made it into the Ronald McDonald House. We are very happy to finally be there. The first night we were at a couple's home near CHOP. Last night we stayed in a hotel, and tonight we were planning to sleep at the hospital. But, on our way to the hospital, we got the call for an opening at the Ronald House---Praise the Lord!!!! God provided for us yet again just as the Bible states, "My God shall supply all your (my) needs according to his riches in glory by Christ Jesus," Philippians 4:19. Thank you again for all your prayers! God is listening!!!

SURGERY TODAY, AUGUST 4TH

2010-08-04T13:01:00.002-04:00

Isaiah is currently in the OR getting his G-tube placed. We had to be at the hospital at 10am, but he wasn't taken in to surgery until 1pm. It is a 1-2 hour procedure. Please pray for Dr. Joy Collins as she works on him, and for no complications during the surgery. Pray that this new tube in his stomach will help him want to eat. Also, we have not been able to get into the Ronald McDonald House yet. We are still trying and hopeful. Right now, we are staying with a very nice couple that live only 5 minutes from CHOP. They don't have air conditioning, so we are a bit toasty up on the 3rd floor. I guess you could say we are a tad spoiled;)We are just glad we are close for now.

Thank you for all your prayers!

FANTASTIC NEWS!!!!!!!!!!

2010-07-28T16:15:00.014-04:00

Once again, God answered your prayers as we waited for the endocrinologist to get back to us about Isaiah's issues. According to the Diagnostic specialist we saw, the endocrinologist felt very strongly that Isaiah does NOT have anything wrong with his pituitary, adrenal, or thyroid glands. She reviewed his entire chart, labs, radiology reports, etc. from birth til now. Per this doctor, Isaiah is showing NO signs of these particular glands being affected-----PRAISE THE LORD!!!!!!!!!! He will have his thyroid levels repeated just to make sure they are back up to normal (they were a little low in January due to his sickness). We are still waiting to see if anything needs to be done about his spine.

Another exciting moment for us was when Isaiah walked for the first time this past Monday!!!!! He balanced himself off of the therapist and took 4 unassisted steps to me. Then he took another 6 unassisted steps for the video camera for daddy. We were very excited! Then, at the park, Isaiah decided to climb up the stairs of the jungle gym ALL BY HIMSELF!!! I didn't even know he could do that! He is on a rampage now! Hopefully, you can see some of the video clips we tried to attach!

Surgery is back on for Wednesday, August 4th. Isaiah will have the G-tube placed in his stomach for feeds. It'll be much easier to manage, and hopefully we will have less mishaps from the extended tubing we are currently using--we've found Isaiah at the bottom of his crib with the tubing wrapped around his neck a few times. Fun huh?!?!?

TWO PRAYER REQUESTS:
1. That surgery goes well and that it will actually improve Isaiah's reflux and appetite.
2. That we can get in to the Ronald McDonald House. We won't know till the day of if we can get a room at the house. We need a room from Tuesday til Sat. Please pray with us.

Thank you again for carrying us through a very scary time!!!!

SURGERY AUGUST 4th----UPSETTING NEWS

2010-07-20T00:00:00.008-04:00

Well, we were at CHOP again on July 15th and on the 19th to see more specialists. On Thursday, we left the house at 6:20am and didn't return til 7:15pm, a very loooong day. I am going to try to give you the short version of what is going on.

Isaiah saw Radiology, General Surgery, Pulmonology, Anesthesia, and Diagnostics on the 15th, and Cardiology on the 19th.
1. Radiology: a repeat chest X-ray was done, and his lungs were clear. This is a praise since his last x-ray was abnormal.
2. Surgery: Isaiah is tentatively scheduled for surgery August 4th for a G-tube placement into the stomach for feeds, which would replace the NG tube in his nose. Surgery believes he stills needs the Nissen procedure, but we are desperately trying to avoid that because of all the complications that surround it. He will be hospitalized for 2-3 days post-op, and we will be staying at the Ronald McDonald House again (if possible).
3. Pulmonology: Isaiah has been officially diagnosed with a moderate case of asthma. The doctors put him on 3 new medications and is having him rechecked for cystic fybrosis. The original blood tests for CF were inconclusive for them.
4. Anesthesia: Isaiah is cleared for surgery as long as he remains well and stable. He will have to be closely monitored post-op to try to prevent any apneic/bradycardic events.
5. Diagnostics:This was the most intensive appointment of the day. Dr. Mark was incredibly thorough and found some abnormal lab work that had been missed by other doctors. Apparently, Isaiah's thyroid and vitamin D levels are low. Also, he may have pituitary problems and spinal issues. The abnormalities with the thyroid and pituitary have a direct affect on Isaiah's growth and development. If the docs can not regulate/correct the problems with the thyroid and pituitary, the worst case scenario is that Isaiah will stop growing and developing. This was incredibly difficult to hear. I will find out more this week what the plan of treatment will be for Isaiah. I know he will need more lab work and probably 2 separate MRIs, one of the brain and one of the spine. Dr. Mark wanted to confer with several other specialists---Endocrinology, Genetics, Urology, and Surgery---to determine what would be best plan for Isaiah. Pray for wisdom for them.
6. Cardiology:Isaiah has been having subtle changes on heart monitor that he wears during tube feeds and at bedtime. We went from normal readings, to a low resting heart rate of 50-60 bpm, to now having apneic episodes. Cardiology does not feel Isaiah has anything structurally wrong with his heart, but that part of the central autonomic nervous center of the brain may be causing the changes (i.e.the pituitary). His last EKG was normal. Dr. Boris is curious to see what would happen if all the labs stabilized. Abnormal thyroid and pituitary levels can have a direct affect on the heart as well as other important organs/systems of the body. Isaiah is currently on a 24 hour Holter monitor. I am hoping that whatever episodes Isaiah has been having will be captured by the Holter.
7. Primary Pediatrician: Last, but not least, Isaiah's primary doctor has some concern about the adrenal glands. I called the Diagnostic doctor to let him know. I am hoping that all the doctors can coordinate what tests they need as to not have to put Isaiah through too much.

Well, this is the abbreviated version of the craziness that is going on right now. We need alot of prayer, grace, and wisdom to figure out what's happening in little Isaiah's body. Please pray that everything can be stabilized, and that nothing serious will happen to him. Thank you.

STAMPIN' UP FUNDRAISER DURING JULY

2010-07-01T21:16:00.007-04:00

Dear Friends and Family,
A dear friend of mine approached us about doing a fundraiser for Isaiah during the month of July. It continues to amaze us how God moves people to meet our needs without us ever saying anything. God is truly generous to us.

Misty Denlinger works for Stampin’ Up as a consultant and will donate her sales commission during the period of July 1, 2010 – July 21, 2010 to our family. Any profits from an order placed during that time under Misty, that mentions in an e-mail or phone call to her that it is for Isaiah, will go to our family. To place an order or browse the products, please follow the following steps:

1. Go to www.stampinup.com
2. At the top right of the screen click on Find a Demonstrator
3. Where it says Demonstrator Directory type in Misty Denlinger State: PA
4. Misty’s information will come up and you can click on her website.
5. You can begin to shop products individually, download a catalog, etc.
6. You can order directly on the website under Misty or you can contact her directly at 215-361-2654 or mddenlinger@verizon.net. If you live locally this may save you a little on shipping.
7. Make sure you not only check out their beautiful stamps and paper but also under Home Décor the Vinyl Art and stencils.
8. Please place your order under Misty Denlinger’s name and then notify her by e-mail or phone that the order you placed is for Isaiah.

It's important to notify Misty of the order you placed so she can credit Isaiah's account. Unfortunately, there is NOT a place online to specify that your order is for Isaiah. If there is any confusion or questions, please contact her. She is more than willing to answer any questions.

Thank you all for your continued love and support, and thank you to Misty for reaching out to our family.

HOPE CONCERT---THIS SUNDAY!!!

2010-06-25T10:26:00.005-04:00

This Sunday, June 27th, at 10:30am there will be a special music concert at our church, Bethel Baptist Church (754 East Rockhill Rd, Sellersville, PA 18960). The theme is HOPE. The proceeds from the music CD sales go to a young married couple that have been fighting brain cancer. Alyssa was diagnosed with an incurable brain cancer when she was in college. Chris and I will be speaking, as well as some other couples in our church that have gone through significant trials over the past couple of years. Sometimes we all need to be reminded of God's grace and love even during difficult times. God is the only one who can provide HOPE when life seems too difficult to continue on. Isaiah will be there. So, for those of you who did not have a opportunity to meet him at his 1st Birthday party, now is your chance! There will be a catered lunch following the concert. We would love to have you come. If you have any questions, you can contact the church at 215-536-9200.

Now, for a quick update on Isaiah---we have been dealing with diarrhea for 4 months besides all the sicknesses. He was treated for C-diff, but the antibiotics didn't seem to clear up the diarrhea. We are currently having more tests run. His appetite is better and his weight is up to 20 lbs. 8 oz. Thankfully, he has not lost a lot of weight because of the tube feeds. There is a possibility that we might have a G-tube placed in his stomach for feeds, since he will be on them for awhile. Also, there is talk of Isaiah entering into an intensive feeding program that runs 4-6 weeks straight, M-F, 8-5:30p down at CHOP. Pray that Chris and I have the wisdom determining whether we should go ahead with the surgery and if Isaiah really needs the program. It would be nice for him to learn to eat "quantity sufficient" to come off the tube.

Isaiah sees Urology on July 2nd to have an ultrasound to rule out kidney stones. Then on July 15th, we see Pulmonology (to rule out asthma/poor lung function) and Diagnostic (to obtain a better view of all his symptoms). On July 19th, we see cardiology again for the low heart rate and the abnormal reaction to racemic epi. On August 4th, we see Orthopaedics (for his hips and legs) and GI. Please pray that we get to the bottom of Isaiah's issues.

I am looking for someone to go down to CHOP with me on August 4th. However, I really need someone to watch Josiah on July 15th and 19th and on August 4th. If one of you could help out, please let me know. I would greatly appreciate it!

Thank you for your continued prayers and support.

NEVER A DULL MOMENT...

2010-05-26T21:48:00.012-04:00

It's been a tad busy here since Isaiah had his hand surgery in April. Thankfully, his hand is healing nicely. The surgeon told us that he wouldn't have any movement in that thumb until 6-8 weeks after the surgery. Well, at 4 1/2 weeks, Isaiah moved the tip of the thumb, and then at 5 weeks, moved the whole thumb. We are just so excited to see another miracle happen in his little body. Thank you all for praying.

We saw the surgeon, Dr. Chang, May 27th for another follow-up and he gave us a schedule to follow for therapy. We need to see an OT specialist twice a week for quite awhile until Isaiah gains full use of his hand. Dr. Chang was completely excited to see how well Isaiah is doing. I was able to tell him that Isaiah is healing quickly because of everyone's faithful praying.

We've hit a few bumps in the road this past month. On May 12th, Isaiah ended up in the ER for severe abdominal pain. We were afraid that his intestines had twisted. The pain lasted for about 2 hours, and then resolved. Thankfully, the x-rays were negative. We saw the GI specialist the following week, and she felt he may have had intusseseption, when the bowel folds back on itself like a telescope. The only way to verify this is to have an ultrasound done at the time of acute pain. We are hoping it doesn't happen again. The other reason could be kidney/urologically related, so we are to revisit his urology specialist.

Then, on May 22nd, Isaiah went back to the ER at CHOP with difficulty breathing, a severe cough, and a fever of 104.7. He was diagnosed with croup, given steroids and breathing treatments, and sent home even though the x-ray showed possible pneumonia. We thought he was passed the worse since he didn't have a recurring fever since Sunday morning. But, on May 25th he crashed again and we went back to his primary physician. Isaiah was started on steroids, antibiotics, and albuterol breathing treatments to treat both croup and pneumonia. Please pray for a quick and full recovery.

I'll admit, I am a bit tired of running back and forth to the doctors. The doctors still have not found the source of Isaiah's lack of appetite, intermittent vomiting, weight loss, and now diarrhea for the past 3-4 weeks. They also do not know why he is having a harder and harder time recovering from anesthesia. We now have to see 3 new specialists and 1 previous one that had signed off a year ago. They are pulmonology, allergy, diagnostic, and urology. Please pray that somehow the doctors find some resolution to some of Isaiah's issues.

Just a few days ago, we received Isaiah's apnea monitor reading. Up until this point, all of his readings were within normal limits. Unfortunately, this last reading showed his heart rate is resting at 50-60 beats per minute. This is low for a baby. We now have to revisit cardiology to see if there is any underlying problem that was missed before.

Blessings the past few months:
1. Isaiah is moving his new thumb
2. Chris and I celebrated our 6th anniversary
3. My brother, Doug, was able to share Isaiah's story on TV down in South Carolina in conjunction with a Ronald McDonald House Fundraiser. He did a great job (see the following video)
4. Josiah is learning to potty train---pray he learns quickly, for my sanity!)

Prayer Requests:
1. For all the new specialists (cardiology, pulmonology, diagnostic, urology, and allergist) that need to examine Isaiah. Pray that we get some resolution to some of his issues.
2. That Isaiah quailifies for nursing home health care and for some adaptive aides for walking. It would be nice to have some additional help.
3. Pray for Chris' grandfather. He is struggling with Cardiac and eating problems and is not doing well. This has been very difficult on his whole family.

Thank you again for all you do for us!!!!!

HEALING NICELY...

2010-04-24T21:08:00.000-04:00

Isaiah recovered quickly from surgery and we were able to come home late, last Saturday night. Isaiah did have a hard time recovering from the anesthesia and was on oxygen for the night. He kept having apneic episodes where he would stop breathing, then drop his oxygen levels and heart rate. We knew this would happen, so we were all prepared for it. Unfortunately, every time Isaiah has had surgery, he has been having a harder and harder time recovering. Hopefully, as he becomes older, he'll have an easier time with anesthesia. One of the anesthesiologists feels he may have a metabolic disorder that doesn't allow him to metabolize medications properly. However, there is no way to test for this, so we just have to be diligent in our observation of Isaiah. Isaiah is pretty much back to his normal, busy little self, with the addition of a big bright orange full arm cast. He continues to use the right arm and fingers (except for the thumb) as if nothing happened. What he doesn't realize is that his cast is like a really hard weapon that hurts us when he hits with it. He thinks it's funny when we try to duck out of the line of fire;) We go back to Dr. Chang on April 30th for cast removal, x-rays, and a splint. We will have a better idea at that time how the new thumb is healing. It will take about 6-8 weeks for the new thumb to have any movement. The upper endoscopy also went well. We received the results of the biopsies a few days ago. Other than a little abnormal inflammation in the stomach and the puckering of the pylorus, everything else appeared normal. The GI specialist feels that the food aversions and throwing up may be all behavioral. I am not fully convinced that that is all it is. Time will tell. Before Isaiah's surgery, we went to have his hearing rechecked. Thankfully, since his ear surgery in December, his hearing has improved significantly. He had 40% hearing loss, but now is back in the normal range. We are just so thankful to God for restoring Isaiah's hearing. Thank you again for all your prayers and support. We truly rely on the strength of God's people to carry us through. Thank you for the letters, emails, gas cards, cleaning our home, and for the dinners. Many of you have helped relieve alot of pressure off of me. We can't thank you enough for your kindness! "Therefore encourage one another and build each other up, just as in fact you are doing,” I Thess. 5:11 Here are some before and after pictures that Dr. Chang sent us of Isaiah's hand surgery. It's quite amazing! Who would have thought you could make a thumb out of a finger?!?!?! "For I the LORD thy God will hold thy right hand, saying unto thee, Fear not; I will help thee," Isaiah 41:13.

PRAISE THE LORD, SURGERY WENT WELL!!!!!

2010-04-16T22:03:00.002-04:00

Isaiah's surgery went very well today. Between the 2 procedures, he was in the OR for about 4 1/2 hours. The endoscopy was primarily normal except for a slightly abnormal looking pyloris. The doctor, Dr. Boyle, said it was "puckered" and took a biopsy of it. We won't know any results for 5-7 days.

Dr. Chang, plastics/ortho, was very pleased with Isaiah's hand. He feels that Isaiah will have great results over time. It takes approximately 6-8 weeks till the new "thumb" is able to work. Isaiah has a full arm cast that is bright orange!) He looks rather cute. I have to admit, though, that I will miss his little 'nub' of a thumb.

We were very blessed to have our pastor, Pastor Campbell, and his wife Rochelle come down and pray over Isaiah and with us. We belong to such a special church that truly love and support us. Thank you to everyone for continuing to pray for us, for providing meals, for taking care of Josiah, for cleaning our home, and so much more. We have so many different people, family, and friends taking care of us that we cannot thank you enough! We don't know what we would do without you!

SURGERY IS SCHEDULED....

2010-04-15T23:31:00.003-04:00

Just wanted to let you all know that Isaiah's surgery is scheduled for April 16th at 11:00am. We have to arrive at CHOP at 9:30am for pre-op procedures. Today we found out that Dr. Haber's group, GI specialist, will be adding on an Upper Endoscopy to try to figure out why Isaiah has been having all the eating issues and vomiting. They will do a series of biopsies along the GI tract. We won't know results for 3-4 days after the procedure. Immediately following the endoscopy, Dr. Benjamin Chang will perform surgery on the right hand, making the index finger into a thumb (pollicization). Please pray for all the doctors involved that they will have steady hands and clear minds. Thank you again for all your support and love through all of this. The expected time of stay at CHOP for Isaiah is 2-3 days. Chris and I are staying at the Ronald McDonald House. Pray that all goes well, and that we will have calmness of heart. It's not easy watching my little baby go through multiple surgeries, but I know in the long run it is the best thing for him.

Philippians 4:13, "I can do all things through Christ who strengthens me."

MEDICAL UPDATE...

2010-04-12T20:50:00.000-04:00

Hello Everyone,
I wanted to give you an update on all of Isaiah's appointments this past February. It was an absolutely crazy month, but we made it through because of many of your prayers and help. Thank you to those who helped out with meals. You have been a real blessing!

We saw Dr. Haber, GI specialist, for Isaiah's reflux and eating issues. Since he came home with the feeding tube, he has slowly put weight back on. Even though his weight is still below the 5th percentile, Dr. Haber was encouraged by his weight gain, so she does not feel Isaiah needs surgery right now for a more permanent feeding tube or for the Nissen surgery---a HUGE answer to prayer! In fact, one of the doctors stated that after reading his list of problems, she was expecting a baby in much worse condition. Instead, they found a little boy smiling and playing---Again, a huge testament to the power of the Great Physician! Right now we will continue with his nightly feedings until he can eat enough by mouth during the day. It still is a constant fight to get him to eat or drink milk. Continue to pray for patience for us as we feed him, and pray for a bigger appetite for him.

We also met with 2 new orthopaedic specialists, Dr. Carrigan and Dr. Sankar. Dr. Carrigan evaluated Isaiah's left arm. At this point in time, there is nothing to be done with the left arm. He did give me some bad news. He said that there is a possibility that Isaiah's right arm may not grow normally either. Please pray that God will spare the right arm. Dr. Sankar checked on Isaiah's hips and femurs---He feels there is some slight left hip dysplasia and that the femur heads not ossifying is related to his malnutrition. He will recheck Isaiah with X-rays and another full assessment in 6 months.

Dr. Chang is scheduled to perform surgery on Isaiah's right hand this Friday, April 16th. It's called pollicization, where he removes Isaiah's floating thumb and moves the pointer finger into a thumb position. It requires a 3 month recovery period. Isaiah will be casted for 2 weeks and splinted for 4 weeks and will have numerous visits at CHOP Main and Chalfont for rehab. Pray that all goes well. I'll be honest, I am very nervous about this surgery. It's a very complex surgery that can have serious complications, but Isaiah needs it to have a better functioning life when he's older.

We attempted to have Isaiah's hearing reevaluated by Dr. Germiller to see if the tubes helped restore his 40% hearing loss. Unfortunately, he had another ear infection, so we will have to go back to the audiologist in the near future when he's 100% better. So far we haven't noticed a difference in Isaiah's hearing. Right now, he is working with a Speech therapist for his verbal delay (which is related to the hearing loss).

Dr. Kirschen, from neurology, was encouraged with Isaiah's continued growth and meeting of milestones. At age 2, Isaiah will have a repeat MRI of the brain to make sure it is growing and myelinating properly.

We will continue to visit the Feeding Clinic at CHOP until Isaiah is eating well enough on his own. We will also continue to have regular visits with his primary pediatrician. Isaiah's therapies have increased from 3 times a week to 4-5 times a week. He sees physical, occupational, and speech therapy and works with a dietician as needed. It gets a little busy and tiring, but I keep reminding myself, Isaiah is here, he's beautiful, and every day is a gift.

I will be sending another update shortly for March and April as well as an update after Isaiah's surgery on Friday. Thank you for your continued prayers!

PAMPERED CHEF FUNDRAISER FOR ISAIAH...

2010-03-18T21:17:00.002-04:00

My friend, Jen Black, contacted me to do a fundraiser for Isaiah. He is having right hand surgery Friday, April 16, 2010. It is a complex 3-4 hour surgery that will require 3 months of recovery time, with many trips to CHOP Main and Chalfont for checkups and rehab. If all goes well, Isaiah will only be at CHOP for 2 days. We will be staying at the Ronald McDonald House during that time. Jen works for Pampered Chef, and will be having a show at her house on Friday, March 26th at 7pm. She also has a website that you can purchase products through. If you have any questions, or would like to attend the show, you can contact her through her website or me through our email, isaiahsjourney@yahoo.com to obtain her address and directions. The following instructions Jen gave me for those who cannot come to the party but would still like to order something from Pampered Chef---
Directions for Contributing to the Fundraiser for Isaiah:
1. Go to www.pamperedchef.biz/jenniferblack
2. Click on “Shop Online”
3. Go to option 1 to purchase within a show.
4. Type in "Isaiah Miller"
5. Click on Isaiah Miller
6. Start shopping! I recommend that you immediately go to “Guest Special” and select the item you would like for free. If you don't qualify, it will let you know. It's better to remove instead of forget to do it completely. For the month of March, if you spend $60, you get a choice of a Bamboo Tool Set for FREE.
7. When finished, click on “proceed to checkout.” The website is “VeriSign Secured,” so your information will be protected and no one else (including me, the consultant) will see your information.
8. Thank you for your support of Isaiah!

Below is the details of how this fundraiser helps Isaiah:
• 15 percent contribution goes to cover the extra costs surrounding Isaiah's surgery
• $3 contribution for each booking (if you book a Show, Isaiah gets $3 for each booking)

Jen will be trying to close out the show by March 31st. However, you can still order something in April and the proceeds will still go to Isaiah. Please pass this information onto anyone that may be interested in supporting Isaiah. We would really appreciate it. Thanks for all your love and support!
Below is Jen's Contact information:
Jen Black
Pampered Chef Senior Consultant
410-952-1179
267-373-9510
www.pamperedchef.biz/jenniferblack

ISAIAH'S 1st BIRTHDAY WAS AWESOME!!!!!!!

2010-03-08T21:28:00.014-05:00

Dear Friends and Family, We had such an amazing and wonderful party for Isaiah! God answered all our prayers and we had a wonderful celebration of Isaiah's precious life. We can't thank the Moms and Tots group at Bethel Baptist Church enough for organizing and running Isaiah's party, especially Elyse Shedal and Mandy Grogan. It was overwhelmingly exciting to see our little boy make it to his first birthday and to see all the people that were involved in his miraculous life. As we looked around the room, it was amazing to see how many people Isaiah has brought together. Over 200 people attended Isaiah's birthday. We were able to meet several people for the first time, many met Isaiah for the first time, and we were able to catch up with people we hadn't seen in years. Through Isaiah's life, strangers became friends, neighbors became confidants, friends became as family, and our family became a close support system. How amazing is that?!?!?!?! We are tremendously blessed! Thank you to everyone who participated in making Isaiah's birthday so special. Thanks to those who brought food, supplies, assisted all our friends and family, and for all the gifts and support for Isaiah. We love you all very much and appreciate all you do for us. You mean more to us than you will ever know. Our biggest thanks, though, goes to our wonderful Savior, Jesus Christ, who has given us more than we could ever ask for. He is the Great Physician and Provider!!!! Enjoy the pictures!!!!!!!!

SATURDAY IS THE BIG DAY!!!!! ISAIAH IS ONE!!!!!

2010-02-18T19:24:00.005-05:00

We are so excited about Isaiah's first birthday this Saturday! A little over a year ago, we were given little hope, told not to expect much. And now, here we are celebrating a year, rather than only 2 months (our original request from God). We are also very excited for you to meet God's little miracle and for us to meet some of you for the first time! It'll be nice to catch up with those we have not seen in years. It amazes me how God has used this little baby to bring so many people together. We had no idea what God had in store for us when He designated us to be Isaiah's parents. This journey has not always been easy, but it has been blessed!

Just a couple of requests for this Saturday:
1) If you or one of your kids are sick, we ask that you stay home.
2) Please wash your hands upon arrival to the Timothy Center and use Purell (hand sanitizer) throughout the day to try to keep the amount of germ exposure down for Isaiah.
3) When meeting Isaiah, please only touch the top of his head, his feet, or any part of his back side. We ask that no one touch his face or hands, since he puts his hands in his mouth.
4) No kissing!

I hope you understand our precautions and don't take it personally. We are just trying to keep Isaiah healthy and out of the hospital. We appreciate your cooperation!!!!!!!!!

In case you lost or deleted the evite, the party is Sat., Feb. 20th, and is held at Bethel Baptist Church (in the Timothy Center) 754 East Rockhill Rd., Sellersville, PA 18960. There is very limited cell phone reception at the church. If you try to reach us and can't get through, we ask that you try calling the church at 215-536-9200. Family is to meet from 1-3pm and friends from 3-5pm (unless you were told otherwise). Can't wait to see you!!!!!!!

GAINING WEIGHT...

2010-02-06T12:22:00.004-05:00

Thankfully, Isaiah has been gaining weight nicely since discharge. When he left CHOP, he weighed 15.86 lbs., but he now weighs 16.13 pounds. We are almost back to his weight before he got sick. He continues with his tube feeds during the night as well as a heart monitor. Isaiah is eating much better during the day, but still has a long way to go before he comes off the feeds. Right now, both boys are currently being treated for Strep throat. They both are congested and feeling under the weather. Please pray that they both recover before their birthday parties.

Pray for all of Isaiah's appointments this month----We have 12 appointments with different specialists: GI, 3 different orthopaedics, ENT, Audiology, Primary Peds, Feeding Clinic, Neurology, Early Intervention, OT splinting, and Homecare. These are appointments besides all of his weekly therapies, which they plan to increase to 4-5 times a week (up from 3). Needless to say, I'm a bit tired with all the travelling and having to stay on top of things. Chris and I could use a break, but Isaiah has to take priority right now for the best possible outcome for him.

Thank you for all your continued prayers and support. I will admit, right now, I'm pretty overwhelmed and feel a bit forgotten by God. In my head, I know that's not true, but my heart is crying out for relief. I'm not always strong or spiritually sound, so right now I could really use your specific prayers to help me through this journey and to learn to focus on God's blessings verses the negative. I need to believe wholeheartedly that God does know what He is doing and learn to depend completely on Him. I need to learn to believe God is love and wants what is best for us.

"He is before all things, and in him all things hold together," Colossians 1:17

"Praise the Lord, O my soul; all my inmost being, praise his holy name. Praise the Lord, O my soul, and forget not all his benefits— who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, who satisfies your desires with good things so that your youth is renewed like the eagle’s. As a father has compassion on his children, so the Lord has compassion on those who fear him; for he knows how we are formed, he remembers that we are dust. But from everlasting to everlasting the Lord’s love is with those who fear him, and his righteousness with their children’s children. Praise the Lord, all his works everywhere in his dominion. Praise the Lord, O my soul," Psalm 103

HOME...

2010-01-28T15:17:00.004-05:00

We came home late Monday night from CHOP. Isaiah had his first nurse home visit at that time. By the time the nurse was done examining him and setting up his feeding pump, it was late and we were exhausted, but we were home!!!!!!!!!

What Isaiah was diagnosed with this time at CHOP was C-Diff (from being on antibiotics for his ear infections) and Norovirus which is what caused his diarrhea and vomiting. He lost over 2 pounds. He did come home with a feeding tube and a heart monitor. Isaiah gets continuous feeds of fortified formula during the night and is encouraged to eat whatever he wants during the day. Hopefully, as he becomes stronger and eats more, the docs will lessen his feeds and Isaiah could come off the tube permanently. The docs also found that Isaiah's reflux is pretty significant and they would like for him to have surgery in the next couple of months. However, the surgery (called Nissen) is pretty involved and can have A LOT of complications with it. We are not sure this is the route we want to take. But, if Isaiah's intermittent vomiting that he's had over the past 3 months does not resolve, we may not have a choice.

It was a HUGE blessing to come home to a clean and disinfected home. Thank you to the ladies from our amazing church who took the time to make our home safer for Isaiah's return. Thank you also to those who helped us with food, meals, gas cards and other financial needs. We are so blessed to belong to a true Bible-believing church filled with people who demonstrate God's love to us regularly.

We have several requests that need your prayers:
1. For Josiah--the separation this time was very difficult for him and he has been having a hard time assimilating back into family life. It's getting harder and harder leaving Josiah, but often we don't have a choice. Pray that any future separations won't leave a permanent, negative mark on his precious, little heart.

2. For Isaiah to continue eating and gaining weight so he can avoid surgery.

3. For all the appointments in Feb. I need help watching Josiah on Feb. 18th and 24th. If anyone could take care of one or both of those days, I would appreciate it. I am also looking for someone to go down to CHOP with me on Feb. 24th.

4. Chris and I would love a small vacation away somewhere warm, sunny, and with a beach. We could use a break with quiet time to reconnect.

Thank you again for your love and support!

DOING BETTER....

2010-01-24T23:11:00.003-05:00

Well, your prayers have been working. Today, for the first time, Isaiah looked and seemed to be feeling much better. He was playing with us and making faces and trying to make us laugh. He kept his food down and only had one bout of diarrhea. He is SLOWLY gaining weight, and may be able to go home in the next couple of days. He will come home with the feeding tube and an apnea monitor. We enjoyed having Josiah down here for the weekend. Isaiah was so happy to see him as were we! Josiah is back now with his cousin Danny. Thank you for constantly thinking and praying for us!

We have met several amazing families and children down here at the Ronald McDonald House. We ask that you also pray for these special children: Noura(from Saudi Arabia)-fighting cancer; Alex(from Poland)-facial/cranial reconstruction; Isabella(from PA)-fighting RSV and is on a vent; Cailee-has 2 more surgeries to endure; and Derek(from PA)-having hemangiomas removed. Pray that we can stay in contact with these wonderful families and that God will show Himself real.

SO, HERE'S THE SCOOP...

2010-01-20T23:22:00.002-05:00

Isaiah has been down at CHOP now since Sat. night. He has seen alot of doctors and has had quite a few tests done. Here's the run-down. I am going to use some medical terms, so if you have questions, please consult the internet. My brain is just too tired to explain everything---sorry!

Isaiah's fontanelles are still very open, which could be related to a nutrition deficiency, not sure. Neurology will further investigate. Scoliosis of the spine was ruled out, but mild left hip dysplasia was diagnosed. He will need a special brace designed for his hips, but it will be done as an out-patient procedure at a later date. His femoral heads have not ossified, and I'm not sure how this will affect him in the long run, but again the docs think it's related to malnutrition. Isaiah will be seen by multiple orthopaedic surgeons/doctors to deal with the weakness in his spine, both of his upper extemeties, his hips and femurs.

Today, I had to place a Naso-gastric tube down for feedings. Isaiah is still not taking in enough food or fluids to sustain him, and he still has periodic vomiting episodes and diarrhea that the docs can't figure out. There is a possibility for surgery later to help correct the reflux problem, but not until he is stong enough. He is very weak and listless. It's hard to watch. He stays awake for about 45min-1hr. and then is back to sleep for several hours. He has significant muscle wasting and is just so skinny. Sometimes, I feel like I'm going to break him when I pick him up. Please continue to pray for him and for us!

Chris went back to work today, and hopefully Josiah can come down to visit this weekend. We are very thankful for the Ronald McDonald House. We met 2 little girls we would like for you to pray for: Taylor P. and Rowan. Their families would appreciate it. Thank you for your continued love and support!

BAD NEWS...

2010-01-17T17:29:00.002-05:00

On Friday, Isaiah took a turn for the worse, starting again with vomiting and diarrhea. By Saturday, he couldn't keep anything down, and his urine output dropped significantly. Sooooooooooooooooo, back to the hospital we went (after just being discharged from GVH on Wed). Only, this time he is at CHOP. Chris took him down late Sat. night and he was finally admitted to a bed at 6am Sunday morning. So far with the tests they have done, the doctors see possible blockages in his stomach/intestines. They Drs. are planning to do a barium swallow study and and upper endoscopy (a camera down his throat to see what's going on). He is on IV fluids and is not able to eat. The Drs. do realize how malnourished he is. Both Chris and I believe that something other than reflux and sickness is going on. Isaiah has been having periodic vomiting for the past 3 months, and they don't know why. Pray that the doctors get to the bottom of Isaiah's issues. Before Isaiah comes home, he will receive a feeding tube. We will be staying at the Ronald McDonald House and Josiah will be with his cousin Danny. Please pray for all of us.

ISAIAH IS HOME, FINALLY!!!!!

2010-01-16T14:19:00.002-05:00

Thank you for all your prayers and support! Isaiah and I finally made it home on Friday at 4pm from my Aunt and Uncle's home. Josiah had been over his illness for about 48 hours. It's good to be home with my husband and both of my boys! Isaiah will continue with his breathing treatments and antibiotics for the next 10 days. His post-hospitalization check-up with Dr. Greenburg on Friday went well, but she also feels Isaiah does need a feeding tube. She is contacting his GI specialist to see if we can get down to CHOP to see Dr. Haber earlier than Feb. 8th, but we will see. We postponed Isaiah's appointments to CHOP that were on Jan. 15th to Jan. 29th to give us a little break. Continue to pray for Isaiah's full recovery.

Quick reminder, Isaiah's 1st Birthday Party is quickly approaching!!!! We really would like for all of you that read the BLOG to come, and please pass the invite onto your friends and families who have also prayed for his little life. We really want you to meet our little 'M&M' (Miracle Man). Please RSVP to isaiahsjourney@yahoo.com ASAP to let us know if you can come so we can have enough snacks available. Thanks and hope to see you all soon!!!!!!

ALMOST HOME...

2010-01-14T17:42:00.003-05:00

Isaiah was discharged from Grand View on Wednesday afternoon. He was sent home on breathing treatments every 4 hours and antibiotics for a double ear infection and sore throat. Unfortunately, we were unable to go home since Josiah woke up with vomiting and diarrhea on Wed. Currently, Isaiah and I are staying at my Uncle Bruce's and Aunt Liz's home until Josiah is better. The CHOP doctor encouraged us to keep the boys apart for at least 48 hours until Josiah is passed the worst. Hopefully, we will be home late Friday night or early Saturday.

Thank you for praying for all of us and also for the meals provided. It is a comfort to my heart to know that all I need to do is ask and my men are taken care of. Thank you also to everyone who helped watch Josiah.

Please continue to pray for Isaiah's full recovery. He lost 1 1/2 pounds and is still not eating or drinking what he needs to catch back up. Chris and I are now seriously considering a feeding tube/PEG tube for him. Isaiah is just so skinny right now, with even more muscle and tissue wasting than before. We are concerned that if we don't start fattening him up now and getting him more nutritionally stable, he will become more physically and developmentally delayed. We are afraid that if he were to get sick again, he will even have a harder time to recover because he has no reserves. And, with major surgery coming up in April, he needs to be as healthy as possible. We have several doctors appointments coming up in the next 2 months. Pray we make the right decisions.

I did get some wonderful opportunities in the hospital to share Isaiah's journey and the path God has chosen us to take. Several doctors, nurses, and a couple parents now have Isaiah's blog address. Pray that they read it and see God's amazing power and providence. "Every experience God gives us, every person He puts in our lives, is the perfect preparation for the future that only God can see" (Unknown).

Tuesday Noon Update

2010-01-12T11:38:00.003-05:00

As of this morning Isaiah's IV has been taken out so they can see how he does with eating and drinking. Because of the IV, Isaiah isn't really getting thirsty so they want to see what he takes in today. They also changed his breathing treatments from every 3 hours to every 4 and also changed what drug was getting administered for the breathing treatments. Hopefully this helps with him dropping his heart rate. His fever broke yesterday but he is still receiving pain medication for his ear infections which is new. If he eats and drinks well today, we should be able to take him home tomorrow. At least that's the plan for now.

Thank you all for your prayers, calls, meals, etc.... It's GREATLY appreciated.
Chris & Joy

Sunday Night Update

2010-01-10T22:48:00.004-05:00

Isaiah is still in the hospital. He is starting to eat but very little. It is staying down so that is an improvement. He still has a low grade fever that they are keeping under control with meds. He's also still getting his fluids by IV as he really isn't drinking much either. Joy had a rough night last night and I relieved her around noon so she could go home and take a nap. When Joy got back to the hospital, I had to head back home to relieve my parents who have been watching Josiah all afternoon. Joy told me tonight that Isaiah is have episodes where he is dropping his heart rate. Nobody is sure what this means right now. Continue to pray that this a small part of the RSV and the doctors and us are not missing something else hiding. Pray his fever breaks and he starts eating more. Then he will be able to come home.

Every obstacle the Lord puts before us, He's trying to show us something. We have seen so many blessings and met so many people we wouldn't have met through Isaiah's birth. This is just another opportunity to see God work. I pray we will see what the Lord has to show us. We just heard tonight of a mother who is expecting and the baby has complications. The mother was thinking of having an abortion but one of our friends shared Isaiah's story and that mother has since changed her mind. As if Isaiah's life isn't enough, it's great to see other's lives affected positively as well. God is GREAT!!!

Again, we'll keep everyone posted of Isaiah's progress as soon as we can. Have a great night.
Chris and Joy

Update.......

2010-01-09T20:47:00.003-05:00

Isaiah has been admitted to the hospital. He will spend the night and we will see how he is tomorrow. He tested positive for RSV. He is still having trouble taking any food and liquids. They were able to get the IV started, so we are taking care of the dehydration. We will see how everything is in the morning. Joy will be staying at the hospital for the night. I went to drop things off and see Isaiah while my parents stayed at our house and watched Josiah. Hopefully Isaiah gets the rest he needs and his fever breaks tomorrow. We also neeed him to be able to start keeping down foods. Thank you everyone for your prayers. We'll keep you updated as soon as we can.

Thanks
Chris & Joy

IN NEED OF SOME PRAYER....

2010-01-09T11:12:00.003-05:00

Isaiah is sick again. He's had a fever now for 3 days and been throwing up pretty much everything we try to give him. There is now a ton of congestion in his chest now and the throwing up we feel is due to all the drainage from his teething. All this, for 3 days now, has made us extremely concerned about dehydration and loss of weight.

Joy just left with him to go to the ER. Please pray that they can figure out what is wrong so we can put this behind us quickly. Also pray that he doesn't lose a lot of weight as he has another eating evaluation in a couple of weeks.

Thank you all for your continued support and prayers during these times.

Chris & Joy

SAVE THE DATE---FEBRUARY 20, 2010...

2009-12-31T11:37:00.006-05:00

ISAIAH IS TURNING ONE!!!!!!!!! Can you believe it?!?!?! We would like to celebrate this special day with EVERYONE! Yes, we mean everyone! We want those of you who read Isaiah's blog, our close friends and family, neighbors, church goers, everyone that has had a part in Isaiah's life to come to his birthday party. He is here today because of the faithful prayers of many. We would like for you to have an opportunity to meet Isaiah as well as give us a chance to say, "Thank you." His birthday party is Saturday, February 20, 2010 and will be held at Bethel Baptist Church, Timothy Center, 754 East Rockhill Rd., Sellersville, PA 18960. The tentative time frame is 1-3pm for family and 3-5pm for friends. We will have more details to follow as we get a little closer. If you can come, please email us your response at isaiahsjourney@yahoo.com so we can make preparations for food, etc...

Please come! It will be a great day to praise God for His amazing little miracle Isaiah!

SURGERY WENT WELL...‏

2009-12-24T22:45:00.001-05:00

On Tuesday, Dec. 15th, Isaiah had surgery on both of his ears to correct his 40% hearing loss by placing ear tubes. His surgery went well. We had to be at CHOP at 6:15am, and his surgery was at 7:40am. The surgery itself only took 20 minutes, but it took Isaiah about 2 1/2 hours to come out from under the affects of anesthesia (longer than they anticipated). We left the hospital around 12:30pm. Dr. Germiller did not see any structural abnormalities, however, he did not see any fluid in the ears either (which is what he was attributing the hearing loss too). Isaiah's hearing will be rechecked in 6-8 weeks. Please pray that his hearing will be improved and that the doctors won't have to take any other measures. Thank you to all of you that prayed for Isaiah's safety during surgery, wisdom for the doctors, and peace of mind for us.

Josiah gave a little scare the Monday before we left for CHOP. Somehow, he hurt himself in his room and he could barely move his head and neck. Josiah said he hit his head, but really couldn't tell us how he did it. By the time I picked him up on Wed., he was in soooo much pain, crying, had not been sleeping through the night, had dark circles under his eyes, and could not move his head and neck at all. We ended up at Grand View Hospital for X-rays of his neck and upper back. Thankfully, nothing was fractured, but you could see that his cervical spine was being pulled out of alignment because of muscle spasms. It took Josiah a few more days til he was able to move his neck again. We were just so happy nothing more serious occured.

Isaiah's weigh-in with the feeding team also went well (Dec.10th). He now weighs 16lbs. 15oz. They were happy with his progression and the feeding tube has been taken off the table. We have to see them 1 more time. Continue to pray that he will advance with foods, especially since table foods are to now be introduced.

On Jan. 15th, we are back to CHOP to see several doctors. Isaiah has his post-op appointment with Dr. Zedrick (urology) and sees Dr. Chang (ortho/plastics) about his right hand surgery in April. Isaiah will also be seeing a new doctor, Dr. Carrigan, an orthopeadic specialist for Isaiah's left arm. His left arm is significantly underdeveloped, with missing bones and muscles. We are hoping that this doctor could help give Isaiah a better option for his arm, if not, then we need to look elsewhere.

A BIG THANK YOU to all who participated in Mike Landis' photography fundraiser for Isaiah. Mike and his wife, Trish, are such a huge blessings to us. The gift that was collected helped us out tremendously. It helped us cover groceries and a couple bills we could not have paid. Thank you, thank you, thank you!!!!!!!!

We wish you all a wonderful Christmas and Happy New Year! Isaiah 12:4-5, "Praise the Lord, call upon His name, declare His doings among the people, make mention that His name is exalted. Sing unto the Lord, for He hath done excellent things: This is known in all the earth."

REFLECTIONS

2009-11-30T14:22:00.002-05:00

As Veterans Day passed, I was thinking about how blessed we are as a country and as a family. If it weren't for the amazing men and women that sacrifice their time and lives, my son Isaiah may not be here today. If it weren't for them protecting our freedom and ability to advance in every area of life, Isaiah could not have had the life saving surgery he needed at 6 days old. I am so grateful to these beautiful people. They are true heroes. They are men and women I want my children to know and look up too. Some of the people we would like to recognize and thank are:
Chris's family: Uncle Rich Litzenberger--Army; Cousin Matt Novia--Marines
My Family: Great Grandpa Solt; Grandpa David Solt--Navy; Grandpa Douglas Emr--Navy; Great Uncle Paul Solt; Cousin Philip Solt; Cousin Dustin Donofry
Close Friends: Corey Nawrocki--Marine (just returned from 6th tour of duty on 11/27/09), Sam Kinch--Air Force, Amy Kinch
These are just a few of the men and women that we are forever grateful too. Hopefully we didn't miss anyone. We love you and thank you!

For Thanksgiving, we were able to get together with my dad's (Emr) side of the family. We were able to go around and say what we are thankful for. Chris and I both are very thankful for our boys, and especially for Isaiah's life. We were expecting maybe 2 months with Isaiah, and here we are 9 months later enjoying his crazy, stubborn, funny personality. Also, we have been so incredibly blessed by our friends, families, church family, and all the wonderful people we've met along the way. We are just so grateful for what we have been given.

Quick Update:
Isaiah had a weigh-in on Nov. 16th, and the dietitian was relatively happy with his weight gain. However, the biggest test will be on Dec. 10th, when the whole team reevaluates him. Hopefully, we will continue on this positive uphill climb and avoid the feeding tube.

On Dec. 15th, Isaiah will be having surgery on both of his ears. He has 40% hearing loss, and Dr. Germiller believes, that with tubes, Isaiah will be able to return back to a normal hearing range. He does have significant fluid buildup behind his eardrums, and we are hoping that that's all it is and that the hearing loss is not related to more structural abnormalities. Please pray for quick recovery and no complications since Christmas is right around the corner.

HUGE PRAISE: The baby, Christopher Michael (parents are Michael and Taneka Oldham), is doing well. Christopher did survive the pulmonary hypertension crisis, which the doctors at CHOP say is a miracle. He is still down at CHOP but is no longer critical. He is breathing on his own and is no longer on any meds, but is still on low dose of sedatives to help with his withdrawal from the high amount of morphine he needed to be on due to his condition. They are trying to get him to entirely eat from a bottle/nurse before he can come home and be off the sedatives completely. WOW what a journey he has taken and what plans God must have for him because even the best children's hospital in the country didn't predict for him to live, but as we know God is bigger than the best. Thank you to those who prayed.

Today is the last day for Isaiah's fundraiser. I found out from Mike, the photographer, that there are 2 ways to still participate in the fundraiser: 1) You can pay for a portrait session today, and schedule the appointment for the pictures for later in December. Mike is an on-site photographer. He will come to your home or any where else you would like to take your friend's/family's picture; OR, 2) you can do a direct donation to Mike Landis. He has all the information you would need, since this is his fundraiser. I'm not sure what all is involved. Again, Mike's contact information is as follows: Mike Landis's website, http://mikelandisblog.com/?p=2937, or contact him directly by phone 267-328-7457 or through his email address mike@mikelandisphotographer.com.

Thank you again for all your love and support.

MANY APPOINTMENTS, MANY UPDATES...

2009-11-04T10:57:00.012-05:00

Just a warning, this will be a long update with alot of information. Isaiah had many appointments in October. We were at the doctors (CHOP) every week for various checkups. I will start with the praises, and end with our prayer requests.

PRAISES:
1. Thank you to those who prayed for Isaiah when he was really sick. It lasted for about 6 days (from 10/14-10/20). On the 20th, he finally woke up without a fever, but slept all day. He was a tired little dude!

2. Praise the Lord---the hole (PFO) in Isaiah's heart has officially closed! It was confirmed on Oct. 14th by Dr. Boris. Cardiology has signed off Isaiah's case. It is wonderful not to have to worry about the health of his little heart anymore.

3. Isaiah passed his eyesight test---he has a slight abnormality in the optic disks, but nothing that should affect his eyesight. We go back to see the ophthalmologist when he is 3-4 years old.

4. Another one of Isaiah's genetic tests, Zic 3, came back negative. We are still waiting on the results for Cystic Fibrosis and Fanconi's syndrome.

5. Angelina Coleman, one of the babies we have been praying for, is going back to Florida in about two weeks (after being up here for over 1 year). Her family leaves to go back on Nov. 12th. Pray as Angelina is medivaced to a local hospital in FL, and for her family as they learn to maintain her ventilator and trach. The family's hope is for her to eventually go home someday soon. Angelina still has to become stronger after her double lung transplant.

PRAYER REQUESTS:
1. Isaiah failed his hearing test. He is not hearing in the lower decibels. We go to see and ENT specialist, Dr. Germiller, on Nov. 16th at CHOP Main. Josiah will also be seeing the specialist for multiple ear infections to determine whether or not he needs tubes.

2. Isaiah also failed to put on enough weight for the CHOP swallowing/feeding team. There is a very large discrepancy between his length and weight. He is below the 5th percentile. They feel he has mild wasting (loss of muscle tissue), and if he doesn't eat approximately 30 ounces a day, he may end up with a feeding tube. They feel he is not taking in enough nutrients to sustain new muscle and tissue growth. Isaiah is improving with eating baby food, about a jar a day, but that is still not enough to gain weight. Please pray that he miraculously gains weight by the next visit(December10th). Another issue could be his reflux is worsening and that is why he is not eating well. The team will be addressing that as well on Dec. 10th. Also, pray for me as it's hard to constantly fight over every meal and bottle. It would be nice for Isaiah just to eat nicely without a struggle.

3. Please pray for a family who just had their first baby last Friday, and the baby was diagnosed with Pulmonary Hypertension after he was born up at Lehigh Valley Hospital. The baby was treated with a catheterization and placed on a ventilator. This was supposed to be the treatment that would help him recover and become stronger within a few days. The baby a couple day ago took a drastic negative turn and they flew him down to CHOP b/c Lehigh couldn't stabilize him. As they were getting ready to load him onto the chopper he coded (Cardiac Arrest). They were able to revive him, but it is touch and go. The baby's name is Christopher Michael, and the parents are Michael and Taneka Oldham.

PLEASE lift this baby and family up in prayer and for healing and super grace for them at this time! They had no idea at birth that any of this would lay before them. Taneka hasn't even held him yet!!!! I will update you as I know more.

UPCOMING EVENTS:
1. Isaiah's next surgery is scheduled for April. It will be pretty extensive as they create a thumb out of the index finger on his right hand. He will be casted and splinted for 6 weeks, and then have extensive therapy. It'll be a long recovery.

2. SAVE THE DATE!!!!!!!!! February 20, 2010 (Saturday)--It will be Isaiah's 1st birthday! Everyone, and we mean EVERYONE, is invited to share in this joyous occasion! Isaiah is here because of everyone's prayers. We want everyone to come and meet Isaiah and we would like to meet those we haven't met yet. We will share more info as the date becomes closer---We do know the birthday party will be held at Bethel Baptist Church, in the Timothy Center. Please Come!!!!

3. REMEMBER THE FUNDRAISER FOR ISAIAH!!!!!!!!! If you meant to participate and haven't yet, here is a friendly reminder. It ends November 30th. Please check out Mike Landis' website for the information, http://mikelandisblog.com/?p=2937, or contact him directly by phone 267-328-7457 or through his email address mike@mikelandisphotographer.com. Thank you.

4. Chris and I are looking for several individuals to help us out through the fall/winter months. We would like to have help with the boys on Sunday mornings and Wednesday nights so Chris and I can go to church occasionally together. Both Josiah and Isaiah keep getting really sick every time we go out in public. We are desperately trying to keep them healthy. A couple of our wonderful neighbors have been helping us right now, but we don't want to tire them out!)

Thank you all for continuing to uplift us in prayer, for the encouraging letter and emails, and for the financial help. We seriously could not get through all of this with Isaiah without your support and love. It is so true what the Bible says about family/friends, "Two are better than one; because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." Ecclesiates 4:9,10,12 Thank you for being our 'friends'! We love you!

CALLING ALL PRAYER WARRIORS...

2009-10-17T12:04:00.003-04:00

Dear Friends,

We are dire need of God's intervention in the health of Isaiah right now. We spent the majority of the day yesterday (Friday) at Grand View's Emergency Room. He has had high fevers for a few days, the highest being 105.1. He has also had difficulty breathing and swallowing, and has white patches in his throat. His appetite and his urinary output are decreased. Isaiah was given IV fluids and antibiotics to cover anything that might be bacterial. We are still waiting on his blood culture and throat culture results. The pediatric ER doctor feels that he has just a really bad virus, and it is NOT influenza A (swine flu) or influenza B. Please pray for all of us that we will get over these infections, especially for Isaiah since he is only 7 months old. We have all had something---I had bronchitis, Josiah had bilateral ear and eye infections, Chris had an upper respiratory cold, and Isaiah also had eye infections. We are quite frustrated with everything that is going on. We will have to now limit contact with the outside world. We can't afford any more sickness. Please pray for our sanity and health. We would greatly appreciate it!

"My Grace is sufficient for thee; for My strength is made perfect in weakness..."
II Corinthians 12:9

And finally, some more pictures.

2009-10-03T15:01:00.003-04:00

Sorry everyone it's been so long. I just realized that the last time we posted pictures was back in April. So here are some more... (Left to right, top to bottom) 1. With Dad, right before the last surgery 2. With Mom, right before the last surgery 3. Our boys dressed up for church 4. Our boys wearing their Ronald McDonald shirts 5. Trying food, but I don't like it. 6. Bath time. What...they're clean.

FEEDING CLINIC UPDATE...

2009-10-03T12:51:00.002-04:00

Hello All,

Just wanted to let you all know how Isaiah's last visit went at the Feeding Clinic at CHOP Main. Isaiah was seen by 5 specialists: a Nutritionist, Speech, OT, Nurse Practioner, and Dr. Cohen (a feeding doctor). This was the quickest appointment we have had yet, only 2 1/2 hours long. Chris's Aunt Anita went down with us, cause I though it would be a long day. Thankfully, it wasn't a long day, and I appreciated the company.

Right now, the specialists do NOT feel that Isaiah has any structural abnormalities, but rather just has a strong aversion to food. We have to spoon feed formula to Isaiah twice a day to try to get him used to taking in 'food' by mouth via a spoon. Also, his home OT (occupational therapist) works with him once a week as well. We will head back down to CHOP Main for a reevaluation on Oct. 21st. Hopefully, he will be improved and we can move onto actual food.

Isaiah has several appointments this month with CHOP doctors. Due to the 3 abnormalities in his brain, Isaiah will have his hearing and vision reevaluated on Oct. 7th. He needs to be rechecked to make sure everything is still functioning normally. On Oct. 14th, Isaiah will be seeing Dr. Boris, Cardiologist, to have the hole in his heart reevaluated. On the 21st, we head back to CHOP Main for feeding clinic. I am looking for someone to watch Josiah on the 14th. He would need to be picked up at my house around 9:30am, and then one of us will get him when we get home. Also, if someone would like to drive down with me on the 21st, I would appreciate it. I just want you to know that I will be visiting one or two of the other little babies we have been praying for on Oct. 21st.

We do have some sad news to share with everyone. One of the babies in Isaiah's pod down at CHOP's NICU, passed away on Sept. 21st. His name was Blake Carvalho. He was just a few days shy of his 7 month birthday. He fought long and hard, along with his parents, against his disease of autosomal recessive policystic kidney disease. Please be praying for his parents, Barbara Pereira and Bryan Carvalho. My heart just breaks for them. I know many of you prayed for Blake and his family. Thank you for that.

Thank you again for all your prayer and support. Remember to visit Mike Landis' blog site for his fund-raiser for Isaiah--http://mikelandisblog.com/?p=2937 . Mike's contact phone number is 267-328-7457 and his email address is mike@mikelandisphotographer.com.

We love you all!

FUNDRAISER FOR ISAIAH...

2009-09-18T21:15:00.002-04:00

Hello Dear Friends and Family,

We wanted to let you know that one of our friends, that we met on this amazing journey with Isaiah, contacted us to do a fundraiser for Isaiah through his photography business to help with our many expenses. If you remember, Mike Landis, took the first pictures of Isaiah right after he was born. Mike was with us during a very uncertain time and sacrificed his time and resources to take beautiful photos. We are incredibly thankful for Mike and his wife, Trish, who continue to support us.

To find out about Mike's fundraiser for Isaiah, please go to his blog site for further information. http://mikelandisblog.com/?p=2937 Thank you, Mike and Trish, for your love and support.

Also, please pray for us as we head back down to CHOP again on Sept. 21st. Isaiah has been having trouble swallowing food. He either chokes, gags, throws up, or just holds the food in his mouth refusing to swallow it. His Occupational Therapist has been working with him, but he has not progressed. It's frustrating, because it's just one more thing to follow-up on. Isaiah will meet with 4 different specialists. I am looking for someone to go down to CHOP with me. I know it is short notice. We would have to leave my house at 7:00 in the morning on Monday, and I don't know what time we would return. Please let me know if anyone is available. I would appreciate it.

Isaiah has recovered nicely from his surgery. We had a little set back in the beginning, due to an onset of diarrhea, but thankfully all of his tests came back negative. The doctors think Isaiah was probably sick due to the medication and the anesthesia. He is back to his usual self. Thank you to all who prayed. We will update you after he meets with the specialists. Isaiah has not been tested yet for Cystic Fybrosis. We have other things to take care of first...

ISAIAH'S SURGERY...

2009-08-29T12:18:00.004-04:00

Dear Family and Friends,
Thank you all for praying for Isaiah and for us this past Friday. We all had an incredibly long day. We arrived at CHOP at 7 :15 in the morning for a 7:30 am check-in time. However, he was not taken back for surgery until 10:50am. The poor boy didn't have anything to eat since 11:00pm the night before, but he did great considering. Besides correcting his urological problems, the doctors found he had hernias in both groins. Thankfully, everything was fixed and put back together. We ran into one snag, though. When Dr. Zderic was operating, he found some structional abnormalities inside of Isaiah which made him think of Cystic Fybrosis (a lung disease-how it relates we don't know). We have to follow up with the geneticist again to have further testing done. Please pray that these tests for Cystic Fybrosis come back negative. Isaiah did stay overnight for observation, but we were released at 11:00am this morning. We are going to be heading home soon from the Ronald McDonald House.

We are so grateful to all for praying for us and sending us encouraging notes. God has been good. We want to say a BIG thank you to the Bergeys for watching Josiah. We know he had a great weekend with you and Daisy the dog!) Thanks also to Pastor and Rochelle (and Aaron) for coming down and praying with us. You really helped to calm our hearts. Thank you to those who helped out with meals to take some pressure off of me----that was a HUGE relief. Thanks to my father-in-law, Glenn, for watching Isaiah so I could pack and clean before our trip down to Phila. Thanks also to my Aunt Liz who spent many hours with Isaiah and me down at CHOP preparing for his surgery. And, last but not least, thanks to our neighbor Deb for watching the boys on very short notice for my doctor's visit and for Josiah's visit to the ER (he needed stitches in his forehead for a fall a couple weeks ago).

We are continually reminded of God's goodness and faithfulness. We encourage all of you to read Isaiah 43:1-4, and 7. God does not leave us in times of struggles because as He states, "You are mine..." As we continue on this journey, we hope we will always remember this promise, even when days seem dark. Isaiah is amazing, a modern day miracle!

We love you all very much.

Magazine Support - Angelina

2009-08-19T16:19:00.001-04:00

Hi everyone,

We wanted to try to help out another couple that we met at the Ronald McDonald House in Philadelphia. They have been at CHOP since October 08. Their daughter had a double lung transplant. Even though she had her transplant and is doing well, her and her family are not out of the woods yet.

They are trying to raise support through magazine sales. If you are looking into getting a magazine or wanted to renew a subscription you already have, please consider ordering through the following website. Joy and I were able to renew one of our magazine subscriptions and we saved about 80% on the cover price.
http://t.konversation.com/app/t/g0g/p/q/r61wsh/q/s2g7n/t.htm

Please consider helping out this family. This family has been on Family Medical Leave all this time.

Quick Update On Isaiah:
Joy was down at CHOP all day on Friday Aug 14th with 3 appointments lined up. The first appointment was at 9am with Genetics. They looked him over and were amazed at how well he looked. They still were not able to determine the true cause of what Isaiah has. All tests thus far have come back negative. They did take some more blood to run a couple more tests. Joy and I know what really happened. We feel he had trisomy 18 and through ALL OUR prayers, God healed him. It's the only explanation. Let's continue to give our Lord and Savior the Glory He deserves. Please remember to Thank God.

After that, they met with Anesthesia to discuss his surgery coming up. Even though the procedure is supposed to be an outpatient procedure, we had concerns with how Isaiah would do, after the procedure, after being on anesthesia. When Isaiah had his first surgery (at 6 days old), Isaiah kept dropping is heart rate and oxygen level. They said that they would monitor this and if Joy and I felt Isaiah needed more monitoring, they would not force us out the door. This was nice to hear.

Their last meeting was with the Neurologist to go over the possible buildup of the fluid on the brain. After examining him, they felt that the fullness of his fontanels at times was a normal variance for Isaiah. The size of his head has not grown outside normal limits. This is just something we will just have to keep monitoring. Is was great news that there wasn't an excess of fluid, so much so, that it was actually putting pressure on the brain and enlarging his head.

The other praise with all this is we were able to get back in the Ronald McDonald House so we can be down there the night before and night after Isaiah's surgery. We don't have a time for the procedure yet but were told it could be as early as 6am (another reason we are glad to be at the Ronald McDonald House)

I will try to get more pictures up before the next surgery. Thank you everyone for your continued prayers.

Chris, Joy, Josiah and Isaiah

JUNE AND JULY UPDATES...

2009-08-03T23:21:00.004-04:00

Hello Our Dear Friends,

I know it’s been awhile since we updated everyone. We’ve been quite busy, and I often don’t have time to sit quietly, think and type. So here’s June and July’s update on Isaiah and his schedule for August.

Isaiah has been doing really well. He is now 12 lbs. 12 oz. and is 25.5 inches long. He is very interactive, smiling all the time, and there is rarely a moment he is quiet---he likes to talk A LOT!!!! If he cannot see someone, he makes sure he is noisy enough for someone to come talk to him.

On June 1st, we were down at CHOP to see Isaiah’s neurologist, Dr. Szperka. She was thrilled with the progress Isaiah has been making. He is meeting all his milestones, and she signed off of his case. We were so excited to cross one more doctor off of our list. Unfortunately, we hit a small road block later on in June. Isaiah went for his 4 month check-up with Dr. Ahuja, and he found that Isaiah’s soft spots (fontanels) were full, not flat, and the back one is still open. The front soft spot can be open until age 2, but the back one is to be closed around 4-6 months. We had blood work done that came back normal, no thyroid issues that could be affecting the closing of the soft spots. However, we need to head back to the neurologist for closer monitoring of the fluid on the brain. Please continue to pray that the extra fluid Isaiah has does not increase and put pressure on his brain. I’ll let you know when we have a date to head back to neurology.

On June 25th, we saw Dr. Chang, the ortho/plastics doctor. He is happy with Isaiah’s left hand progress. We initially were going to have Dr. Chang operate on his hand to straighten it, but if he did that, Isaiah would lose function and mobility in his wrist. Right now, Isaiah uses the wrist like an elbow, because he can’t bend his elbow more than 30 degrees. He will still have surgery to make a thumb on his right hand when he is a year old.

In July, Isaiah started with physical therapy on a weekly basis. This was added to the occupational therapy that he has already been doing. This makes for busy days. His strength and purposeful movements have been improving. He is even getting his left (bad) hand to his mouth with the help of his right (good) hand.

On August 28th, Isaiah will have surgery down at CHOP to correct his urological issues. Dr. Zderick will be his surgeon. We have to go down on the 14th for all his pre-op blood-work and meet with anesthesia. I know they want his surgery to be done as an out-patient, but we would like Isaiah to stay overnight. In the past, when Isaiah had to be put under, or had any sedation, he would later drop his heart rate and oxygenation saturation. Usually this happened hours after a procedure. I just don’t want the doctors to discharge him too early and then we have a problem later on. Chris and I will hopefully be staying down at the Ronald McDonald House and Josiah will be with the Bergeys from our church.

We had a great opportunity to share our story/testimony with the students at my old high school, Upper Bucks Christian School. Many of the students there had been praying for Isaiah and for us. What a privilege it was for us to stand before them with a present day miracle that they had had a part in. It was a blessing to show them that God still performs miracles today, and Isaiah is it.

We have a few prayer requests that we would really appreciate your faithful prayers for:

1. Isaiah’s surgery on August 28th. Pray for safety as we travel back and forth to Philly, for Isaiah to make it through without any complications, for wisdom for the doctors, and for Josiah since he’s away from us again.

2. For me—I am still struggling with some issues. I don’t want to go into great detail, but I have good days and bad days. I want to have complete faith in God, but often I don’t.

3. We have several unspokens. Pray that God provides our needs as He sees fit, and that we will be satisfied with His decision.

4. That Chris’s job remains solid and safe. They have down-sized twice this year already.

5. For my cousin, Joshua Solt. He was in a critical accident approximately 2 weeks ago. He was driving a motorcycle with his girlfriend when an unlicensed 17-year-old boy pulled out in front of them. You can read his updates at http://www.caringbridge.org/visit/joshuasolt. He is currently at a rehab center in Bethlehem. He has a trach to help him breathe, and he is awake and alert. Pray for his family as well, and for his girlfriend, Vicky, that she makes a complete recovery.

Thank you again for all your words of encouragement and for checking in on us periodically. We cannot thank you enough.

SO MANY PRAISES, SO MANY THANKS...

2009-06-02T11:16:00.005-04:00

Hello Friends,

It has been a while since we updated the blog. So much has happened since we wrote you last. I will start with the dedication on Mother's Day.

What a blessing it was to have Isaiah dedicated back to God. This was something we never thought we would have a chance to do. God sure is good! He was very cute in his little plaid pants and golfers cap with a navy blue vest. He only cried a little. It was the first time Pastor Campbell was able to hold him. Pastor read the passage from the Bible that he read to us the day we were told our little baby had Trisomy 18, Isaiah 43:1-3, "Fear not, for I have redeemed thee, I have called thee by thy name; thou are mine. When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee; when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee. For I am the LORD thy God, the Holy One of Israel, thy Savior." I started to tear up just remembering where we came from to where we are today, from death to life! Isaiah is truly a miracle! He is here today because of the faithfulness of God's people praying for his healing. Isaiah is here today because God intervened on yours and our behalf!

Thank you to all the friends and family that were able to attend. We enjoyed sharing such a special occasion with you. A special thanks to my mom who travelled up from Tennessee and to my brother Doug who travelled in from Boston to attend the service. It was nice having my whole family together. Isaiah was blessed to have 2 sets of GREAT-grandparents attend also, one from each side, the Millers and the Solts. What a great legacy he has. We also had aunts, uncles, cousins, and grandparents from all over PA and from NJ come to our home to celebrate Isaiah's life. We all had a great time.

The day before the dedication was the Mother's Market and bake sale. The amazing women from Moms & Tots put on a great event. Their goal was to raise money for Isaiah to help with medical expenses and travel costs. I was praying for a specific amount. Wouldn't you know it that God answered my request, plus some. The amount they raised helped to cover 2 medical bills. I was only praying to cover 1 bill. Again, God is just so good to us. Thank you to EVERYONE who participated in the bake sale and market. We cannot even begin to express just how much you all mean to us. We know that there were some people who bought items just to support Isaiah, and didn't even know who he was or who we are. Thank you to you as well. I was able to take Isaiah to the Mother's Market so people could meet him in person. We had fun, and I had fun shopping!)

Isaiah is now receiving therapy at home once a week besides the weekly session of therapy at CHOP's satellite office in Chalfont. He is exercised and stretched. He is not too fond of all the stretching. Through therapy, Isaiah was discovered to also have torticollis, which is a condition in which the head is tilted toward one side, and the chin is elevated and turned toward the opposite side. He always turns to the right. To correct the problem takes allot of diligence on our end. Both Chris and I have to make sure he is being stretched multiple times throughout the day. He is getting better, but still has a ways to go.

A huge praise is that Isaiah is now off of the Apnea monitor! No more alarms during the night! Every clinical read from the monitor was negative for episodes--he did not stop breathing or drop his heart rate below 80 bpm. It was a little scary getting rid of the monitor, but at the same time a great relief!

Another great answer to prayer is that Angelina, one of the little babies from CHOP, received her lung transplants and is doing well. You can read her story at www.caringbridge.org/visit/angelinacolman. Also, her parents are still having a fund raiser for her in which you can purchase t-shirts. I was told they are now available (earlier when I had posted this, the t-shirts weren't ready). Keep praying for her for complete healing so she can go home with her parents and big sister. The following is the info about the t-shirts:

ANGELINA LOUISE LUNG TRANSPLANT FUNDRAISER T-SHIRTS NOW AVAILABLE...
IF YOU HAVEN'T ALREADY PURCHASED A SHIRT,
PLEASE VISIT THE LINK BELOW AND/OR EMAIL IT TO A FRIEND OR COLLEAGUE.
http://www.angelflywear.mybisi.com/

**ORDER 3 OR MORE SHIRTS NOW THRU MAY 31ST AND RECEIVE FREE SHIPPING...REFER TO CODE FREESHIP UPON CHECKOUT.
THANK YOU, THE ANGELFLYWEAR TEAM

A couple of the other babies have also gone home and are doing well. They are Jordan, Tehila, Liya, James and Jack. Two that continue to need special intervention from God are Blake and Jaylisse. I know all their parents would appreciate continued prayer for complete healing for all of them.

We head back down to CHOP on June 1st to see Isaiah's neurologist. As of right now, Isaiah seems to be developing without any mental complications. He is reaching his developmental milestones, and has not shown any signs of delays. Hopefully, they will have continued good news. On June 24th, we see Dr. Chang again (ortho/plastics specialist) to determine what surgery Isaiah exactly needs. Surgery on his left arm is tentatively scheduled for August, along with his urologic surgery. Surgery on his right hand will not take place until he is a year old.

We love all of you so much and cannot thank you enough for standing by us through all of this. Many times you have been our strength when we felt we could not go on. Many of you met needs we had without even asking. We are truly blessed to be in the presence of a miraculous God who takes care of His children!

Thank you and God bless--"I thank my God upon every remembrance of you," Philippians 1:4

ISAIAH'S DEDICATION---SUNDAY, MAY 10th

2009-05-09T22:15:00.003-04:00

Just a quick reminder to everyone, Isaiah is being dedicated on Mother's Day, Sunday, May 10th, at 10:30am, and we would love for all our prayer supporters/friends to come to this special occasion. We are so excited for this day. We have thoroughly enjoyed meeting different people along the way that have been reading our blog and praying for Isaiah and for us. This has been an amazing journey and we look forward to what the Lord has in the future for our little miracle. Please come, we would love to meet you and for you all to meet Isaiah. The service is at Bethel Baptist Church, 754 East Rockhill Rd., Sellersville, PA 18960; tel. 215-536-9200. Happy Mother's Day to all you wonderful mothers out there!

SAVE THE DATES...

2009-05-02T20:55:00.009-04:00

Hello Everyone!
Just a quick note to let you know of a few important events that are going on in our lives. We want to invite you to participate in all of them if you are able. Please mark your calendars!

1. May 9th, Saturday, from 10am-2pm---Our church, Bethel Baptist Church, is putting on a Mother's Market, New 2 You, for the community. All proceeds from the bake/hotdog sales are going to Isaiah to help cover hospital costs and travel expenses. We cannot thank our church enough for standing with us through everything. Bethel's address is 754 East Rockhill Rd., Sellersville, PA 18960 and their phone number is 215-536-9200. Hope you can make it!!!!

2. May 10th, Sunday, at 10:30am---Isaiah's Dedication! We want to invite everyone to this joyous occasion! We are so excited for this day, a day we thought would never come. You all played a part in Isaiah's recovery because of your prayers and faith, and because of that we want you all to be there if possible and meet our little miracle man. It will be held at Bethel Baptist Church, 754 East Rockhill Rd., Sellersville, PA 18960 (215-536-9200).

3. June 1st, Monday---Deadline for ordering T-shirts for a special baby at CHOP, Angelina. We had the honor of getting to know her parents and big sister at the Philadelphia Ronald McDonald House (PRMH). Their family could really use your support. Please consider ordering T-shirts to help them out. Angelina is approximately 8 months old and has been in the hospital since before Thanksgiving of last year (2008). She was born prematurely and is in need of a lung transplant. Her whole family moved up here from Florida to help take care of her and to be close to her at the world's best children's hospital. The following is the information they sent us:
T-SHIRTS IN HONOR OF ANGELINA LOUISE. It is fundraising time for the “Angel”ina Louise Medical Fund. Attached is the layout for the front left chest/back of the white t-shirts that will be completed within the next four (4) weeks. A few of you mentioned that you would be interested in selling some of “Angel”ina’s t-shirts for us so you and/or your friends won’t accrue additional shipping charges ordering through our website …Thank you!

If still interested, please email your address with breakdown of t-shirt sizes (s thru xl) to
angelflywear@gmail.com no later than Monday, April 27, 2009.

Otherwise, if you would like to individually place an order for this t-shirt and/or you have a friend or family member that would like to order a t-shirt then please check out www.angelflywear.mybisi.com no later than June 1st.

COST: $18.00 each
(The minimum bulk order is 30+ pcs. Payment for all bulk orders can be made after the t-shirts are sold) Thank you in advance…It is greatly appreciated!
The Colman Family
www.caringbridge.org/visit/angelinacolman

4. Photos---Check out our friend's website, photographer Doug Burns. He took some beautiful pictures of our little miracle. Hope you enjoy them! http://www.candidmomentsphotography.com/blog/

Have a wonderful weekend and Happy Mother's Day to all you amazing moms out there!

2 Months, 8 Days, and Counting.....YAHOOOOOO!

2009-04-21T20:38:00.007-04:00

How excited we are that Isaiah made it to his 2 month birthday, and then some! God sure is good, "and His mercies endure forever," I Chronicles 16:34. Isaiah is doing well, except for reflux. He's now on Zantac three times a day to help with the reflux, which is very painful for him. We need alot of prayer in this area. He sometimes cries alot, and it can be really trying. I spend a good part of the day holding him while he cries. By the time Chris gets home, I am exhausted. I try to keep reminding myself that it all could be worse, and that this too shall pass. The hardest part of all of this is that Isaiah gets himself so worked up from the pain that he has been refusing to nurse. Most of you know how much I love nursing, so this has been extremely difficult on me. I often have to make a bottle to get him to eat anything.

This past Wed., April 15th, we were at CHOP for a visit with Dr. Haber, a GI specialist that specializes in biliary atresia (liver problem related to the missing gallbladder). She was very happy with the way Isaiah looks and said if he does not develop any symptoms in the next 2 weeks, he will probably never develop biliary atresia. Praise the Lord for that! Only 1 more week, and he's in the clear. I was also able to deliver the 5 thank you baskets to everyone that helped us out at CHOP and the PRMH, thanks to the help of our wonderful friend Stacy.

On Fri., April 24th, we were back down at CHOP to see Isaiah's cardiologist, urologist, ortho/plastics doctor, and have an echocardiogram done. He now weighs 9 lbs. 2 oz. and is 22 1/2 inches long. All of the doctors were happy with Isaiah's progress. The cardiologist will see him again at 8 months of age to continue monitoring the hole in his heart (the patent foramen ovale/PFO). The doctor is not concerned with Isaiah's heart, and feels the PFO will eventually close on its own. The urologist will still have to perform surgery to bring down his testes, but otherwise everything is functioning ok. The ortho/plastics doctor was very happy with the progress of his left arm. He was actually surprised how effective the splinting was working. We will continue splinting his left arm until surgery at 6 months. The urologist and plastics doctors will coordinate surgeries to cut down on how many times Isaiah has to undergo anesthesia. At 1 year of age, Isaiah's right hand will be operated on. Hopefully, that will be the extent of his surgeries. Thanks to my wonderful friend Rochelle S. for keeping me company on a very busy day.

We continue to be amazed by the outpouring of generosity from our friends, family, neighbors and church family. We could not go through this without all of you behind us. Ecclesiastes 4:9-12, "Two are better than one...for if they fall, the other will pick him up." Many times it was your faith and trust in God that gave us the strength to go on. God gave us our miracle son because of many of you. Thank you from the bottom of our hearts.

By the way, you are all welcome to call, email, or visit our little miracle man. We are still requesting that if you are sick or if someone in your home is sick to hold off until you are all better. Also, we are still not accepting stuffed animals because of all the dust and microbes they carry. Sorry about the delay in inviting you to come. It's just been a little crazy around here. We look forward to having you meet our amazing little boy. Thanks for your patience! God bless!

Some more pictures

2009-04-14T22:32:00.007-04:00

Hope everyone had a great Easter. 1 Peter 1:3 Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead... Thank you to everyone that offered to help Joy with her trips to CHOP in Philadelphia. We received many offers and appreciate each and every one. Thank you to our friends Stacy and Rochelle for taking time out of their day to go with Joy for these two visits. And now for some pics.... (Left to right, top to bottom) 1. The thinker... 2. Josiah playing with stickers 3. Josiah sharing his stickers. 4. Brothers playing. 5. He wasn't happy but he sure was cute! 6. Our attempt at Easter pics. 7. There's that smile 8. Check out my Easter outfit. 9. Our Family

We're back online...

2009-04-04T12:57:00.010-04:00

Sorry for not getting out an update sooner. Our power cord to our laptop died and the new one just came in the mail. Chris has been extremely busy at work and he didn't have the chance to send one out from there either.

FYI...If you recieved an ealier email stating "Eeyore is cute..." we were not the ones that sent that out. That email had a number in the subject instead of a title. Our updates will always have a title. This is one thing you can look out for when reading our updates. Please do not reply to those emails. Sorry about this. We're not entirely sure how this happened yet or if it will happen again.

So where to begin....

On Wednesday, Isaiah went to his local pediatrician. He now weighs 8 lbs. and is 21 inches long. He's gaining weight very well and the doctor said we don't have to go back until his 2 month checkup. It's only 2 weeks away but at least we get a 1 week break from this office visit.

On Thursday, Joy went down to CHOP by herself to see Dr. Joy Collins, general surgeon. She was the doctor who performed Isaiah's intestinal bypass. She was so pleased with his progress that she signed off on his case (1 doctor down, 6 to go). After this visit, Joy had to go to the CHOP office in Chalfont so that Isaiah could have his splint adjusted for his left arm. Surgery for either arm is not yet scheuled, and probably won't be till at least 6 months to a year from now.

Isaiah's next appointment is April 15th for a visit with the GI doctor, Dr. Haber. She is following him to make sure he does not develop biliary atresia. Then, on the 24th, Isaiah sees his cardiologist, urologist, ortho/plastics, and will have an echocardiogram done. Joy is looking for someone to accompany her on both of these visits. On the 15th, she has 3 thank you baskets to deliver and needs help carrying them.

When all of this started and we thought Isaiah had Trisomy 18, we were only hoping for 2 months with him. Well, God has been good and not only gave us the health of our precious miracle, but He has been giving us more than 2 months with Isaiah. ("Isaiah 58:8 Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the LORD will be your rear guard.") We could not be more grateful. Every day is a gift. We all love being with him. Every day Josiah asks to hold Isaiah and loves to give kisses to him or play with his hair. It is wonderful to watch. We look forward to the day when the 2 of them are running around and playing together.

We want to continue to thank you all for your continued support and prayers. We honestly do not know where we'd be if we didn't have God in our lives. We remember talking with some families at the Ronald McDonald house and to hear their stories and know that they didn't know God and have that personal relationship with Him was saddening. We ask that you also continue to pray for the children we listed on one of the previous blog entries. We know that two of them, Tehila and MacKynlee, have left the hospital and are now home with their parents.

Here is a small video of Josiah playing with Isaiah. Enjoy.

Update....

2009-03-21T22:52:00.029-04:00

Hello Everyone, We are so glad to be home! Things are going well, although I am quite exhausted with 2 little boys. Thankfully, I have a wonderful husband that takes the weekend shift, allowing me to sleep some. Josiah has been a great big brother and loves to look in on Isaiah. Ever since our meeting with the doctors last Friday, Isaiah has been eating regularly, according to the schedule they set up. He has been gaining weight as he should. His primary pediatrician was excited about his progress, and says his NG tube can come out in a week if he continues to gain weight. What she doesn't know is I already pulled it out because we haven't had to use it. I'll put it back in only if he needs it. We have had wonderful support from everyone, and everyday we are amazed. It's been rather amazing to be in the presence of a present day miracle. Chris and I truly believe our little man was healed of the diagnosis of Trisomy 18. We can only attribute that to everyone's prayers. Matthew 7:7-8 says, "Ask, and it shall be given you; seek, and ye shall find; knock, and it shall be opened unto you: For every one that asketh receiveth; and he that seeketh findeth: and to him that knocketh it shall be opened." We asked for healing, and God granted the impossible ("For with God, all things are possible," Matthew 19:26). Isaiah is truly what his name means, "The Lord saves." Isaiah 65:23-24 says, "23. They shall not labour in vain, nor bring forth for trouble; for they are the seed of the blessed of the LORD, and their offspring with them. 24. And it shall come to pass, that before they call, I will answer; and while they are yet speaking, I will hear." The Lord knows our needs before we even ask for them. We have seen this multiple times through this journey so far. We have been given so much without asking for a single thing from anyone. This is the Lord working. He puts it in the hearts of others to help. Our next year is busy and we would like everyone to pray for strength and safety. This week starts our weekly trips to the satellite office of CHOP in Chalfont or to the main campus of CHOP in Philly. I will be making most of these trips alone, sometimes with both boys. I know this will be hard on all of us, but worth it in the long run. Once we have all the appointments scheduled, I will list the dates that we will need help watching Josiah. We would like people to come to our house to watch Josiah, because it will be too much running for me to drop him off somewhere and then drive to Philly. Thank you again to all who have provided meals, gas cards, diapers, and gift cards. A big thank you to my brothers and sisters-in-law for cleaning and decorating our home, and to our neighbors for cleaning our house. It was so nice to come home to a clean smelling/looking house. Thanks to my fabulous Aunt Liz and Uncle Bruce for all the groceries! Also a big thank you goes to my mother-in-law, Viviane, and sister-in-law, Amy, for helping me take care of the boys during the week. Everyone has helped to make our lives easier, and for that we will be forever grateful. We are trying to thank everyone individually by email or by phone calls, but we know we may not get to everyone. Please forgive us if we forget to call or write. Our main prayer requests are as follows: 1. Safety to and from doctors appointments. 2. That Isaiah and Josiah continue to stay healthy and grow up to be men of God. 3. That Chris's job remains stable. We completely depend on his income and health insurance. 4. We really want this whole amazing journey to be used of God and to see lives transformed, including ours. God bless, and enjoy the pictures! (Left to right, top to bottom) 1. Getting ready to go home. 2. We're leaving. YEAH!!!! 3. My first night in my bed at home. 4. Getting to know my big brother. 5. Josiah seeing if Isaiah is awake to play. 6. Cuddle time with Daddy.

WELCOME HOME ISAIAH!!!

2009-03-17T00:43:00.002-04:00

That's correct. Isaiah IS HOME. Isaiah was discharged roughly 9:30pm Monday night. We made it home around 10:30pm. Words can not express how excited and happy we are to have our little guy sleeping in his own crib and we in our own bed. We just wanted to send out a quick update letting everyone know. We will be sendig out a more detailed update in a day or two.

THANK YOU everyone for your continued prayers and encouraging words. There is not a doubt in our minds God heard us and you. We are truely blessed to have the kind of support we've seen in the past few weeks. Truely words cannot express how we feel about each and every one of you.

Now to bed...

BUMP IN THE ROAD...

2009-03-13T23:33:00.004-04:00

Isaiah is 3 weeks old today, and is getting cuter minute by minute. We are thankful for every day we have with him. Tonight I was able to help give him a bath. It was alot of fun, and I am very thankful for these moments.

Another day has come and gone, and we don't have a discharge date yet. We were initially told we could possibly go home this Sat., but the surgical team changed their minds once again. They feel that Isaiah is not putting on weight as he should. Mostly, this is due to some mismanagement on their behalf. Isaiah is still at his birth weight 3 weeks later. We had a family meeting today with the surgical team (which we called together) to make sure everyone is on the same page (which for 3 days no one knew what the other was doing---very frustrating!). We now have a plan. Isaiah needs to gain 25-30 grams daily for the next 2-3 days and tolerate his feeds, and then we can go home. Please pray that he gets the hang of breast feeding, tolerates his bottle feeds in between, and gains the 25-30 grams daily. We really want to go home before he actually catches some illness that would keep him in the hospital longer. Also, pray for Chris as he starts back to work on Mon. Josiah will be staying with my brother Dave and sister-in-law Lori until we get home. I will continue to stay at the Ronald McDonald house until we are discharged from the hospital. We look forward to being together as a family in our own home.

Thank you again for all your many prayers, letters of encouragement, and gifts that help keep us going. A special thank you to the Plumstead Christian School kids who sent us all the wonderful cards, words of encouragement, and amazing verses. There were many verses that lifted our spirits, but there was one especially that stood out to me, and I want to share it with all of you---
James 1:12, "Blessed is the man who perseveres under trial, because when he has withstood the test, he will receive the crown of life that God has promised to those who love Him." Pray that we continue to persevere with the right heart attitude!

P.S. There are a few more children to add to the miracle list: Briannon, Mallory, Benjamin, and Daniel. I know they will appreciate your interceding for them.

MIRACLES ARE NEEDED...

2009-03-10T22:22:00.003-04:00

We are not the only family that needs a miracle that only God can provide. We have met many amazing children and families here at CHOP and at the Ronald McDonald house that could use your intercessory prayers as well. We ask that you also lift them up as you pray for Isaiah.

In NICU:
Jaylisse, Blake, Lane, Addison, Liya, Tehila, Aaron, and Jordan

In CICU (cardiac):
CarlyJo, Benjamin, Brian, Angelina, and MacKynlee

Having surgery:
Tabitha, Kylie

Receiving Chemotherapy for cancer:
Caleb

Thank you for remembering these precious children and their families.

HOMEWARD BOUND...MAYBE?

2009-03-10T21:03:00.003-04:00

Just to let you know how things are going...

On Mon., all of Isaiah's IV lines were pulled out, including the PICC line that he was receiving the IV nutrition through. The reason they did this was because the docs allowed me to nurse for the first time on Fri, March 6th! Talk about a great 2 week birthday present for my little fighter! I was absolutely sooooooooooo excited that I cried! It was a huge answer to pray that I could finally nurse my little boy. Unfortunately, Isaiah is not a great eater, and still requires a feeding tube (NGT--nasogastric tube placed from nose to stomach--not permanent) to give him his extra nutrition. He is supposed to eat approximately 2 oz. at each feed, every 3 hours. He normally nurses about 1 oz. from me and then the nurses have to give the remaining oz. of breast milk through the tube. We are hoping that in the next few days Isaiah catches on, and the NGT can be removed.

There is talk about sending us home maybe this week, but it really depends on Isaiah's desire to eat, his weight gain, and his ability to maintain his weight. He may have to go home with the NGT, but that's ok with us, cause at least he will be home. We will be receiving teaching in the next couple of days on how to place an NGT, feed through it, and maintain it.

The results of his kidney scan showed he did NOT have urine reflux back into the kidney which is also a huge praise! The ultrasound of his spine was relatively normal, and the docs expect him to be ok, but will still monitor him for a while. The MRI of his brain showed 3 abnormalities, but they are not critical enough at this point for the doctors to be strongly worried. He will be followed every few months. Our prayer request in regards to his brain/spine is that Isaiah will meet each of his milestones as he continues to grow.

Thank the Lord Chris and Josiah are over their strep throat! A HUGE THANK YOU to my wonderful mom (Lois Emr-Blackwell) who came all the way up from TN to stay with us this past week! She did a great job of taking care of Chris and Josiah which allowed me to be at the hospital with Isaiah. I could not have tackled this week without her. I know Josiah really enjoyed his Grammy, and I know Chris was extremely thankful that he could stay in bed and recover. You are awesome mom!

Also, a HUGE thank you goes out to my brother Doug, who came down from Boston to help us out this past weekend. His being here allowed us to get some of our classes out of the way, which we needed to have done in order to go home. Josiah had a wonderful time playing with his uncle.

Many people ask how I am doing...I am doing ok. I still have quite some swelling around my incision site and in my legs, but it is slowly decreasing. I don't have much down time, so recovery is a little slower. A praise is that because of the C-section, my nerve endings in my stomach were all cut, so I have very little feeling and as a result, very little pain. Thank you for all your prayers that were specifically for my recovery---God has been good!

Many people have also asked how can they help us out...we truly appreciate all the generosity that has been shown to us so far. We cannot thank you all enough. We will be honest and say we are not very good about asking for help. So, I will give you an idea of what we are up against this coming year, and you can ask God to lead you in how you should help us out. We like seeing how God works on our behalf, rather than us asking specifically for help.

Isaiah requires the following for the next year:
1. Every week he needs his splint adjusted for his left arm---this will be done at both the satellite CHOP office in Chalfont, and at the Philly CHOP
2. At 3 weeks, we will be back down at CHOP to be reevaluated by the surgical team
3. At 3 months, CHOP again for neurology checkup and eval.
4. At 6 months, CHOP again for urology---possible surgery for bringing his testicles down into his scrotum (a 2 step surgical process). Also, orthopedics will reevaluate his progress with the splint--if the splint is not working, then Isaiah will need casting. We really do not want him to be casted, because then he will lose the small amount of range of motion he has in his left elbow.
5. Cardiology has not set an appointment yet to recheck his heart. Hopefully, by 6 months, the PFO will have closed up. We really do NOT want Isaiah to have to have heart surgery. Pray that the PFO closes soon!
6. Isaiah may need outpatient physical and occupational therapy, but this is not definite yet. If he does, this will also require a lot of travelling.
7. He will require close monitoring by his primary pediatrician. We will be at the office frequently. I just don't know how often yet. But, I know they want us there for frequent weight checks in the beginning after we are home.

This is just a rough idea of what will be required of us, and frankly, it's ok. Isaiah is with us, and he is doing well, which is better than any of us ever imagined. We went from a death sentence of Trisomy 18 to the amazing chance that Isaiah can go home! We still do not know for sure what Isaiah has; the genetic test results won't be back for another 4 weeks. We do know that he does NOT have Trisomy 18 and probably will live a healthy life (from what the doctors know as of right now). I told God the other day that when I thought Isaiah had Trisomy 18, I was only praying for 2 months because that's all I thought we would have. But, since he doesn't have Trisomy 18, I told God, I changed my mind, and I now want a lifetime with all 3 of my boys!

Thank you all for everything. The many emails, letters, and gifts have been extremely encouraging! Continue to pray for guidance and strength for us. Continue to pass our story along. We love knowing people around the world are praying. Don't be afraid to email us; we love to hear from everybody, even people we haven't met yet.

We hope this is just the beginning to an amazing story that God has chosen to write through our lives! You all have played a part! We love you all!

This is our new prayer for our lives---"But you shall receive power when the Holy Spirit has come upon you; and you shall be witnesses to ME in Jerusalem, and in all Judea and Samaria, and to the end of the earth." Acts 1:8

"When you have nothing left but God, then for the first time you become aware that God is enough." Maude Royden

Some More PICTURES...

2009-03-07T22:01:00.016-05:00

I know you've all been waiting patiently. I know it's been a while so here they are. You can click on the picture to make each one bigger. (Left to right, top to bottom) 1. Mommy and the nurses like spiking my hair. (whatever works for the ladies) 2. LOOK, NO TUBE!!! 3. My Big Brother is holding my hand. 4. Each visit Josiah gets better and better with his brother Isaiah. 5-6. Josiah gets to hold his brother for the first time.

PRAISE THE LORD, ISAIAH POOPED!

2009-03-05T07:29:00.005-05:00

YAHOO!!!!!!!!!! I know this may be funny to many, but those who are in the medical field and any parent that has had a child go through abdominal/bowel surgery knows how important this first step is! On Mon. night, March 2nd, Isaiah had 2 poopy diapers. I/We were so excited, because this was the first important step to his recovery and coming home.

On Tues., the surgical team decided to put Isaiah's NG tube to gravity instead of suction, (naso-gastric tube that went from his nose to stomach to drain the contents from his stomach), to see how he would tolerate making his own bowel move the secretions through. They wanted to see if he would throw up, become bloated, have increased pain, or would he pass everything through. Huge praise---he tolerated the NGT being to gravity and his stomach output decreased from 160 ml to only 10 ml in a 12 hour period. The docs and nurses had never seen such a significant decrease in such a short period of time. I told Isaiah's nurse, Dara, that it was God intervening because we had thousands of people all over the world praying for him.

On Wed., the surgical team removed Isaiah's NGT. Then, ISAIAH WAS ABLE TO EAT FOR THE FIRST TIME EVER!!!!!!!!! I was able to feed him his first bottle of 5 ml of breast milk. He took it with minimal difficulty, and then with great precision, he burped all on his own. It was just so wonderful to be able to do something for my little fighter. By the evening, the surgical team increased his feedings to 10 ml every 3 hours. He has been tolerating his feedings without any problem. He is actually waking up hungry. The next step is to make sure he moves his bowels again and is able to gain weight without the help of the IV nutrition he has been getting.

Today, Thurs, they are doing the scan of his kidneys to see if he has any urine backing up into them. They were unable to do this scan earlier. Hopefully, he will pass with flying colors.

Our main requests right now are:
1. Chris and Josiah both have strep throat, and Josiah has diarrhea. Pray for quick healing and that I don't become sick (I tested negative for strep)
2. For safety as my mom goes home Friday---she's been a huge help.
3. That Isaiah stays healthy and can come home soon.

A BIG THANK YOU to our church family for your generosity! We cannot thank you enough for helping us out. Also, to my immediate family for all your gifts, travelling down here, taking care of Josiah, and keeping up with our house. Thanks to our amazing neighbors for cleaing our house and keeping an eye on it. You all are meeting our needs before we even make them known---that is GOD!!!!!

We love you all very much!

P.S. Clarification: The first picture of Isaiah in the last posting was of him after surgery (he's sleeping). The 2 after that were the day before surgery. Sorry if there was any confusion.

1 WEEK DOWN, 1-3 WEEKS TO GO!

2009-03-01T20:25:00.000-05:00

Hello Everyone!
I cannot believe already one week has gone by, and Isaiah is still here and fighting strong for his life. He is so precious. I love holding him and just looking at him. I think he is one of the most beautiful babies I have ever seen (Josiah being the other one), but I guess I am a little biased.

Just to give you a thorough update on his surgery:
Isaiah's stomach surgery was this past Thursday, Feb. 26th at 12n. It was one of the hardest things I have ever had to do to watch my little 6-day-old, with eyes wide open and looking at me, being rolled away from me into the OR room. It seemed like his little eyes were saying, "Mommy where are they taking me and what are they going to do to me?" His helplessness made me cry. I just had to give my little angel over to the Great Physician to do the surgery through the expertise of Dr. Joy Collins' hands.

Thankfully, the surgery went well. Dr. Collins was able to perform the duodenal bypass with minimal difficulty. She was very happy with the work. However, Dr. Collins did find more problems once inside Isaiah's little stomach. She found that he had what is called 'intestinal malrotation', meaning his cecum and small intestines were in the wrong location. She had to rearrange Isaiah's cecum so that it is now on the left side of his abdomen, and his small intestines are on the right side. Also, she removed his appendix to prevent any complications from it in the future. Dr. Collins was unable to visualize the gall bladder, but the common bile duct (that drains the bile from the liver to the intestines) was present. There is still a small possibility that Isaiah could develope biliary atresia in the future, but the gastro-intestinal specialist thinks that if Isaiah makes it to 3 months of age with a functioning bile duct, he will unlikely develope liver problems. This is a HUGE praise. Isaiah will continue on antibiotics and IV feedings for 1-3 weeks until his bowel/stomach recovers. He needs to have bowel sounds, pass flatus, and have a bowel movement before they will start feeding him. I/We are hoping for 1 week versus 3 weeks. The sooner he eats, the closer he is to coming home.

Over the past few days,the following doctors came to see Isaiah: neurology, urology, and gastro-intestinal. On Tues., Isaiah will have an ultrasound scan of his kidneys to make sure he is not having a reflux of urine back into the kidneys. Also, the urologist stated that at about 6 months of age, they will do 1-2 small surgeries to bring the testicles back into the scrotum, if they haven't descended by themselves at that time. Neurology wants to scan his spine because Isaiah has a very small dimple at the base of his back that could indicate problems with his spine. Plus, when going to surgery, the anesthesiologist was unable to thread the epidural catheter into Isaiah's spine. The neurologist just wants to rule out any unseen/missed deformities. Also, because of the missing septum pellucidum (I don't know what this does or mean), they will check Isaiah's eyes. GI feels Isaiah is doing quite well right now, and they will continue to monitor him. Cardiology will continue to follow him because Isaiah still has the PFO (Patent Foramen Ovale) in the heart still open. The PFO should close on its own in a couple of months, but if it doesn't, he would need surgery. Hopefully, he will not need surgery.

I was encouraged the other day by a complete stranger named Matt. He is a professional counselor with his own private practice here in Philadelphia and he works closely with CHOP. He had a full ride to Delaware College and had half of his tuition taken care of by University of Penn for his masters. Matt has both hand and arm hypoplasia (short arms and hands) and is in a wheelchair. I stopped him because I wanted to know how he felt about being born with deformities and how life treated him while he was growing up. I explained to him we just gave birth to a little boy with similar arm/hand hypoplasia issues. Matt said life was tough, but he was glad his mom decided to have him and he wouldn't change anything even if he had the opportunity to have normal length arms. He was a real inspiration to me, and gave me a lot of hope for the future of Isaiah. Matt even said if we ever needed to talk, we could look him up. Every day we have small and big blessings, like Matt, enter into our lives that encourage us to keep going.

Every day God reminds us that He is ever near, hearing our requests and answering our needs, often before we even make them known. He hears the groanings of our hearts, "...But the Spirit itself makes intercession for us with groanings which cannot be uttered. He maketh intercession for the saints according to the will of God," Romans 8:26-27. As tough as this situation is, we have been taken care of by some amazing people and have met some unbelievable people also going through difficult times. The Ronald McDonald house is beautiful, roomy, and they serve us delicious food daily. It's nice not having to worry about what we are going to eat every day. Josiah is now down with us, and even though it makes things a little more crazy, we missed him so much and are glad to be back together. God has taken care of even the smallest of details, just like He pays attention to the sparrows and the lilies of the field (Matthew 10:29-31 and Matthew 6:25-30)

We will continue to keep you updated as we receive more information. As a side note, when Isaiah comes home, we will continue with CHOP regulations to keep him safe and healthy (no balloons, flowers, stuffed animals, or sick people). We will also keep visiting to a minimum until we get a good idea of how he is going to do. We ask that you respect and support our decision to keep our little boy as safe as we can.

With great appreciation for ALL you have done, The Millers

He's OK.

2009-02-26T17:36:00.004-05:00

Praise the Lord! Isaiah made it through his 3 hour abdomnal surgery. We will post all the details later b/c right now we are exhausted. Continue to pray b/c he has a long road of recovery ahead of him. Thanks again for prying for us. We plan to go to bed early tonight so look for an update tomorrow.

PS - just a reminder that if you want to look at the pictures on Mike's Blog, the password is "emr"

Some Good News but still Need Your Prayers

2009-02-25T17:32:00.004-05:00

Hi everyone,

We wanted to wait till we had some concrete news before posting anything. It has been quite a roller coaster down here.

First and foremost we are so happy to we have a gracious and loving Savior in our lives. He is giving us strength amongst the storm. Thank you also, for all those that are praying for us. "The eyes of the Lord are on the righteous, And His ears are open to their cry. (Ps 34.15)"

Now for some good news.
The one test confirmed that there was drainage from the liver. He does not have the life-threatening biliary atresia like they thought. This is a HUGE praise. Isaiah will not need this surgery for his liver at this time, but will still need to be monitored due to the fact that they still cannot find his gallbladder.

Isaiah had a repeat echo-cardiogram to confirm that the hole he initially had in his heart did close. Praise the Lord for His good works! The hole did close.
Isaiah also had a repeat MRI. The MRI showed no excess buildup of fluid in his brain. He does have prominent ventricles, but sometimes boys do have more prominent (bigger) ventricles. They feel at this time, that that is all this is. Isaiah will still have to be monitored by measuring head growth and seeing if he is meeting his milestone markers of development.

Isaiah also had his left hand and arm splinted to start the correction process of returning the hand back to the top of the wrist (ulna bone). He REALLY does NOT like the splint.

Also, Joy was discharged from the hospital yesterday night. We were able to stay almost till midnight so we could spend time with Isaiah. We were also able to get into the Ronald McDonald house which is a mile down the road. We have a beautiful room and the people here are wonderful and helpful. They have a shuttle to and from the hospital. We are thanking the Lord that he provided a close and inexpensive place for us to stay. Joy's mom flies in this weekend and will join us on Monday. Hopefully if all goes well, we will also be able to have Josiah down with us.

Our biggest prayer request is that Isaiah is now planned to go into surgery on Thursday morning or afternoon. (This terrifies us!) There is a web like membrane blocking food from going into his large intestine. The doctors will go in and create a by-pass to fix this. In a couple days and if all goes well, Isaiah will be able to start feedings. Hopefully, in 1-3 weeks, he will be able to eat and nurse regularly. This has been hard for Joy not to nurse up to this point. She has sometimes felt helpless not being able to help/heal her little boy. Please pray that Isaiah gets over this hurdle and that Joy for continues to heal and gain her strength back.

We were able to have Josiah down here today to visit, thanks to one of our wonderful sisters-in-law, Lori. (We have been blessed with a wonderful extended family.) Josiah was actually asking to see "baby", and he called Isaiah, "brother". Josiah also calls Isaiah, "Zaiah". It was really very cute and we were excited to see Josiah trying to bond with Isaiah.

Thank you again for all your prayers.

Monday's Status

2009-02-23T00:01:00.011-05:00

Hi everyone,

Yesterday was a good day just to spend time with Isaiah. It was a quiet day for rest.

Just to give you a quick update. There are a lot of tests being done today. We are hoping to have some more feedback and answers tomorrow. Surgery has been postponed indefinitely till test results are in.

PS - Sorry for not getting more pictures up yet. On the other hand, we were blessed with a professional photographer that works for an organization called "Now I Lay Me Down To Sleep" (NILMDTS). Click Here for the organization website. On the right hand side of this blog, there is a link for "Mike Landis Photography" (password is "emr") and you will be taken to his personal blog where he posted some of the pictures he took this weekend. Sorry, we were just told that a password was implemented. For those that want a copy of the picture, you can right click and "save picture as" to your computer. Please feel free to look at his site and see some more beautiful pictures of Isaiah.

No Surgery Tonight - Saturday

2009-02-21T20:41:00.003-05:00

The doctors have decided to postpone the surgery till Monday. They are waiting for some more test results to get back so that they can maybe try to combine surgeries and fix a couple things at once. At this point the doctors feel he is stable enough to make it to Monday where they will be able to address more of the problems at once. The surgeries planned for Monday are critical. Please continue to pray for strength for Isaiah. That he'll remain stable till Monday and fight through his surgery.

Thank you all for your continued prayers and thoughts. We are reading them all when we get the chance.

Chris and Joy

Isaiah - 2 Days Old

2009-02-21T16:18:00.006-05:00

Dear Family and Friends,

Just letting you know a quick update about Isaiah. All I'm about to tell you is all we know right now. We don't have answers to all your questions; we are still waiting on many tests and other doctors visits. We will probably know more on Monday when the rest of the staff is in.

From head-to-toe:
BRAIN: Isaiah still has hydrocephaly, but how severe it may be is still unknown. He may have brain damage/delay. He also missing the septum pellicudum between the 2 hemispheres of the brain, but he is responding to us and tracking us with his eyes.

HEART: On Monday, the cardiologist will reevaluate his heart to make sure it is functioning ok and that the defect did close up.

DIGESTIVE TRACK: Isaiah has been unable to eat. He is getting his nutrition via IVs, called TPN and Lipids. He has had a tube in his stomach to drain it for the past day. Today, the docs tried to clamp the tube to see if his body could digest and pass his stomach secretion. Unfortunately, Isaiah threw up. He is now going for another test. If this shows a blockage, he will have emergency surgery today.

LIVER: He is showing signs of biliary atresia with bile backing up into his stomach. Biliary atresia is a life threatening condition. The docs will test this on Mon.

KIDNEY: Right now his right kidney may be blocking his testes from descending. They are not in his scrotum, and the docs have not been able to locate them yet. But, both of his kidneys appear to be functioning. Also, the right kidney may be pulling on one of the adrenal glands.

MUSKULOSKELETAL: Both of his hands are missing thumbs. His L arm is severely deformed due to the missing radius, and the orthopedic docs plan on splinting it to try to make it straighter by moving the hand back onto the ulna. After they do this, Isaiah will have to be down here every week for evaluation just for his bones alone. He has extra ribs, and all his ribs are thinner than what they should be. Also, he has a floppy sternum, meaning the ribs are not firmly attached to the sternum via cartiledge. His chest is somewhat concave.

His lab work is normal and he does not appear to be uncomfortable. Just pray because we have so many unanswered questions and we are really struggling. We still don't know what his outcome will be. We ask that if you have any questions about the terminology in this letter, to please look it up. We just don't have the time to explain everything.

Today in my devotions, (I've been reading Jabez's prayer-I Chronicles 4:9-10) God calls Isaiah, saying, "Whom shall I send, and who will go for Us?" Isaiah answers, "Here am I Lord, send me." Isaiah 6:8 Pray that we will be willing to send him to wherever God calls him.
Thank you again for your continued prayers and support.

First Pictures

2009-02-20T15:30:00.003-05:00

OUR SON HAS ARRIVED!!!

2009-02-20T14:59:00.003-05:00

Isaiah Benjamin Miller
6.8 pounds
19.9 inches
Time 10:07am

Mom and Baby are doing well. Joy had to wait to see the baby till the anaesthesia wore off a little. We just got back from seeing our little guy down in the NICU. Isaiah is doing really well. We don't have much info on his condition other than he's stable. The doctors are all examining him and still trying to figure everything out. We won't know anything till the tests come back but the doctors are pleased with how he's doing so far. We will write more when we have some more answers.

Thank you for your continued prayers. We can see the GREAT PhYSICIAN at work and it's encouraging.

Chris, Joy, Josiah, and Isaiah

IMPORTANT INFORMATION----PLEASE READ!

2009-02-15T15:23:00.008-05:00

Hello Everyone,

This is just a quick update on what happened down at CHOP on Tues. My Aunt Liz and I met with the neonatal surgeon, the social worker, the genetic counselor, the nursing surgical coordinator, the lactation consultant, and one of the midwives. It was a very busy day. The surgeon, Dr. Leichty, will be part of a surgical team that will be assessing Isaiah when he is born. He feels Isaiah probably will need some type of surgery early on. They will obtain blood work, X-rays and an ultrasound shortly after he is born to determine if his stomach/bowel issue are critical enough to perform surgery right away, or to see if they can wait. We won’t know until Isaiah is born whether or not he can eat. They will probably use a naso-gastric tube that goes from his nose into the stomach to decompress the stomach until he is stabilized. They will also probably use IV nutrition for awhile.

Shortly after his birth they will also assess his brain growth and development. He may need intervention for his hydrocephaly, but right now the doctors plan to just monitor him. They will also assess his liver. If it is functioning ok, no surgery will be needed at this time.

Unfortunately, the results of the amniocentesis have not been conclusive, and the final results are not in yet. As of right now, the doctors have absolutely no idea what Isaiah has. They basically said, we will have to wait until he is born for them to determine what he has and their plan of treatment. Dr. Zackai, the geneticist/morphologist, will come see our son and give her best educated assessment for diagnosis and treatment. It is rather frustrating. Chris and I have absolutely no direction. Most of the time, we don’t even know how to feel. Isaiah may still live a very short life, but maybe he could live. We just don’t know.

Since Friday, Feb. 20th, is the day of my scheduled C-section, CHOP has given us specific guidelines for us and for any family/guests to follow. Please keep in mind that we are in a critical situation, and this is not a normal delivery. I am having major abdominal surgery (a C-section) and Isaiah will be rushed to the NICU. We know that there will be a lot of people who want to come and visit, call, or send gifts, and we deeply appreciate everyone’s generosity. But, we are asking that everyone be extra sensitive to our unique situation.

CHOP’s guidelines are as follows, per Marty Hudson, MSW,LSW:
1. No visitors on Friday until the doctors give us the ok to call a few people to come down. We are only allowed a short list of visitors. Whoever is on the list will be notified by us. Please don’t take it personally if you don’t get a chance to come down to CHOP.
2. No stuffed animals allowed.
3. No flowers allowed.
4. No balloons allowed.
5. Absolutely no sick people allowed. If you or your children have any type of cold, big or small, you will not be allowed to see Isaiah. Please understand that Chris and I also do not want to be exposed. We have to protect Isaiah at any cost.
6. Please visit the blog for updates or call your contact people for information. We will update the blog and post pictures as soon as we are able to. Please do not call us at the hospital. We will have our computer, so we can receive emails.

The following individuals will be the point of contact for the Emr/Solt families and for our church family: David and Lori Emr. For the Miller/Novia families, Glenn and Viviane Miller will be your contact people. Please only call them if absolutely necessary. Otherwise, the blog will be updated as soon as we have information. The contact people will not have more or newer information that is not already on the blog. As the days progress at CHOP, they will have a better idea as to how to help or assist us.

Thank you again for all your prayers and support. We are constantly reminded of God's grace and provision in this difficult time. He has provided over and over again when we needed it most and in the most unexpected ways. God has stayed true to His promise that He "will never leave us or forsake us," Deuteronomy 31:8.

How we're doing...

2009-02-09T22:18:00.000-05:00

Hello everyone,

Sorry this wasn't a little sooner. I'm sure most are wondering how the amniocentesis went. Well, we definitely saw God's hands in action and all your prayers coming through as there were no problems during the procedure. God guided the doctor's hands and with the other held Isaiah still. It was amazing to see. Joy was monitored for about 30 minutes post procedure and everything was normal.

We now have to wait to see what comes back from the tests. It will probably be about 1-2 weeks till the results are in, if they are able to obtain results off of the fluid. Once the tests come back we should be able to plan for care when Isaiah comes into this world.

Our next visit will be Feb 10th. Joy will be going down with her Aunt Liz. This is just one of her weekly checkup visits. Unfortunately, I need to work so that I have the time off when Isaiah is born. Joy is hoping to meet with one of the surgeons (Dr. Hedrick) this visit. This is the only person we have not met with that is on the team down at CHOP (Children's Hospital of Phila). Please pray that the surgeon is able to meet with us before the delivery, because we need to discuss what type of feeding tube Isaiah will need. She will also be meeting with a lactation consultant to learn how to possibly feed Isaiah, with the surgical coordinator, and with the genetic counselor to learn more about what Isaiah possibly has. It will be a long and busy day for Joy, so please pray for strength for her.

Our main request for prayer is that we had to pick a date for a scheduled C-Section. We were hoping for February 27th but the doctors feel this is too late. Their concern is that Joy could go into labor early and since Isaiah is currently still frank breech, we would run the risk of having an emerency C-section. So, as of right now, it will be on February 20th at 8:30am. The medical team will check Joy before the procedure to see if Isaiah turned. If Isaiah turns, they will hold off on the C-section. We are both overwhelmed at the fact we will have another son in the world next week, and we still don't know how to prepare for him. That is our biggest fear, we just don't know what to expect and we have no way of planning. Everything is out of our hands and in God's. Pray that we will truly put our confidence and faith in the Great Physician.

Thank you ALL for your prayers and emails. They are truely uplifting and we see God working through all this. It's amazing to see how many people are praying for us. We know that there are people all over the world praying for our little son.
1 John 5:14-15
14. And this is the confidence that we have in him, that, if we ask any thing according to his will, he heareth us:
15 .And if we know that he hear us, whatsoever we ask, we know that we have the petitions that we desired of him.

In Christ's arms,

Chris, Joy, Josiah, and Isaiah

Urgent Prayer Requests…

2009-02-01T18:48:00.001-05:00

Dear Family and Friends,

We have some urgent prayer requests that we would like you all to pray for. We honestly feel everyone’s prayers. God uses them to keep us going, give us strength, and give us hope to face another day.

We were down at CHOP again last Thursday, Jan. 29th. We were supposed to meet with the neonatal surgeon, Dr. Holly Hedrick, but she was pulled away to surgery and we never got to meet with her. Instead we met with everyone else on the CHOP team, which included a nurse midwife, an in-patient OB/GYN doctor, a social worker, an anesthesiologist, our regular OB doctor, and we received a tour of the NICU and the new maternity ward. Everyone was very nice and took a lot of time with us. They never rushed us. We were treated like the most important people at that time. They helped put our minds at ease with our transfer of care officially down to CHOP.

We had another ultrasound while were we there. Isaiah is growing nicely. He is approximately 5 lbs. Unfortunately, he has more fluid on his brain and has borderline hydrocephaly (water on the brain, not just in the ventricles). I am still hoping he can be born naturally, which leads us to our prayer requests.

The most pressing issues right now are as follows:
1) All of us have been sick. Josiah is recovering from pneumonia, RSV, and an ear infection. Thankfully, we caught it in time and he didn’t end up in the hospital like he did last year, but we still had to postpone his 2nd birthday party. Chris and I have been fighting colds, but then on Sat. I ended up with food poisoning from Olive Garden. Pray that we all get better soon.
2) Isaiah is breech again, and the doctors at CHOP are tentatively scheduling a C-section for my 38th week (around the 3rd week of Feb)of pregnancy. I am terrified of having a C-section, because I need to be able to get around and help take care of a sick baby. Pray that Isaiah turns head down and makes it home for 2 months.
3) On Tuesday, Feb. 3rd, we are back down at CHOP for an amniocentesis. They will hopefully determine exactly what Isaiah has so we can prepare a plan of care for him. They will also be taking blood from both Chris and me for further testing. I am scared about having the amniocentesis done. Pray for steady hands for Dr. Johnson and calmness of heart for me, and that we will be over our colds by Tuesday.
4) Pray that I will be able to pick up some work in the hospital before Isaiah comes.
5) Lastly, we have some unspoken requests that really need God’s intervention. Pray that God works out the situations for us.

Thanks again for all of your support. Please keep in touch. We have been encouraged to know that even people we have not seen or talked to in many years have been praying on our behalf.

Isaiah's Progression

2009-01-22T10:23:00.003-05:00

Dear Family and Friends,

We cannot say thank you enough for all of your support and prayers. Every day God has been gracious to us, giving us strength and peace. God has met our needs in ways we could have never imagined.

To update everyone, we were back down to CHOP on Jan. 5th where we received the good news that Isaiah’s hole in his heart (the ventricle septal defect) had closed up by itself. We met with the pediatric cardiologist, Dr. Mercer, and she felt Isaiah now has a normal echocardiogram. We praise the Lord for this small miracle. Isaiah will not need heart surgery and probably not have breathing issues after birth. Also, his liver has not gotten worse and his abnormal right kidney does not show signs of hydronephrosis (distention of the kidney with urine due to a blockage).

However, there was bad news this trip. The fluid on his brain has increased and they are still not sure why this is happening. The doctors have not been able to see a blockage, sign of infection, hemorrhage, or a physical defect to cause this. They will continue to measure the progress of the brain and head size. As of right now, Isaiah’s head circumference is in the 50% and his body growth in the 24%. He weighs approximately between 3 ½ lbs and 5 lbs. On Jan. 19th we had another ultrasound that confirmed that the fluid in Isaiah’s brain has increased; the right side has more than the left. We will not know to what extent Isaiah has been affected until he is born.

There’s still a narrowing between the stomach and duodenum. On Jan. 29th we head back to CHOP to meet with Dr. Holly Hedrick, neonatal surgeon. We will be discussing with her the need for some type of feeding tube or minor surgery to allow Isaiah to obtain the necessary nutrition. This is the only type of major treatment we will probably be pursuing if Isaiah truly has Trisomy 18. We will primarily do supportive and comfort care. The doctors finally decided we do have to deliver at CHOP, because after Isaiah’s birth he will have to be immediately evaluated.

There has been question as to what exactly Isaiah has. We will hopefully know after tests performed the first week of Feb. down at CHOP. The doctors still feel he has Trisomy 18 due to all of his anomalies (which still means he will not live long), but that is not definitive yet. No matter what he has we are still praying and hoping God allows us to bring him home for at least 2 months.

As Isaiah’s birth approaches, I am becoming more and more anxious. I’ll be honest; I am absolutely terrified of what the future holds for our little boy. I know that God is in control and He does not give us more than we can handle, but I often feel overwhelmed. God keeps bringing to mind the verses, “Fear thou not, for I am with thee. Be not dismayed for I am thy God. I will strengthen thee, yea I will help thee, yea I will uphold thee with the right hand of My righteousness” (Isaiah 41:10), and Joshua 1:9, “Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee wherever thou goest.” It’s sometimes hard to believe these words of God, but I have actively seen God work in my life and answer numerous prayer requests in the past, that I must have faith and trust Him once again. Chris is always telling me not to worry about what we cannot control, but I’m a mommy and it’s in my genes to worry. Pray for extra strength for me as we are closer every day to Isaiah’s birth.

Continue to pray for us. Our main requests are: 1) that Isaiah can come home for at least 2 months; 2) that Isaiah will be delivered naturally (he is no longer breech, praise the Lord); 3) that God will continue to provide for our needs; 4) that we won’t fall apart under all the stress, but will feel continually strengthened by God’s hand.

Thank you again for all you have done to help us out and for praying for us. We now have a blog set up. We will use the blog to update everyone, instead of emails. Eventually, we will also include pictures as we are able to. Please continue to write us. We are often blessed by your letters and emails.

In His everlasting arms,

Chris, Joy (Emr), Josiah, and Isaiah Miller

Newest update on Isaiah...

2009-01-04T15:17:00.000-05:00

Hello Friends and Family,

This is just a quick update on how things are progressing with Isaiah and with us. We had another ultrasound on Tues. (12/30) with the Abington perinatologist specialty group at Doylestown Hospital. It was nice and comforting having Chris and my Aunt Liz attend the ultrasound. Per Dr. Latta, he felt that there is no change in Isaiah's current condition. In other words, he's not worse, but he's not better. He is maintaining inside of me. This is good news for us. We keep praying that God continues to sustain Isaiah so he can come home for 2 months. Isaiah is approximately 3 lbs. 5 oz. and is in the 27% for growth, which is on the smaller size, but what we are expecting. It's always a blessing to watch him move on the ultrasounds. However, Dr. Latta reiterated again that Isaiah is at high risk to be still-born. We already knew this, but it's still hard to hear again. I just told Dr. Latta that we serve a great God, and that we keep praying that He will allow us to bring Isaiah home. Dr. Latta said, "He is a great God, and there is only one God." That was encouraging to hear from our physician.

Our next big appointment is Jan.5th at CHOP. We will have another in-depth ultrasound and echocardiogram to reevaluate Isaiah's condition. We will then meet with a specialist to determine where we need to deliver. We will continue to update all of you.

As we continue on this journey we are constantly reminded of the verses, "My grace is sufficient for me; for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities (or Isaiah's infirmities), that the power of Christ may rest upon me. Therefore I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties for Christ's sake. For when I am weak, then I am strong." We didn't choose this path for our lives, and it is very difficult. But, with God's strength, we will make it through.

We have some specific prayer requests that we ask you to pray for:1. That God will be glorified through this whole situation and lives will be transformed; that Isaiah's life and death will not be in vain.
2. That God will allow us to bring Isaiah home for 2 months.
3. That God allows Isaiah to make it through a natural delivery, so I don't need a C-section.
4. For continued strength and health for all of us.

Thank you again for your encouraging letters and emails and for your prayers. We do feel them. Hope you all had a wonderful Christmas and Happy New Year!

May God Bless you all richly,
Chris, Joy (Emr), Josiah, and Isaiah Miller

Good news on Isaiah...

2008-12-02T15:12:00.000-05:00

Dear Family and Friends,

Words cannot express how thankful we are to everyone for your prayers, words and letters of encouragement, emails, meals, and help with watching Josiah during doctor’s appointments. This has been a difficult time for us, but we can definitely feel the power of your prayers as we deal with Isaiah’s disabilities and wait for his outcome. We still have good days and bad days, but God’s grace has been very evident.

We had some good news today. We had another follow-up ultrasound (U/S) at Doylestown Hospital. This U/S we have to have every month (besides the CHOP visits) to keep a close eye on Isaiah and his development. I had the great opportunity to take my wonderful grandmother, Georgina Solt, to the U/S. My grandparents have been incredible prayer warriors in our lives. They have been constant examples of what true Christianity is all about and what active faith in Christ entails. It was encouraging to me to have my grandma read Scripture passages in the car on the way down to Doylestown.

Anyway, back to the visit. I was anxious to know if Isaiah’s condition had worsened any or if he had stayed the same. Our good news is that Isaiah has not worsened at this time. His ventricles of the brain have not enlarged any further with fluid, and his head circumference has remained within normal limits. His heart was beating away at 136 beats per minute. The U/S tech could not tell if Isaiah’s heart defect had closed or remained unchanged---that will be determined at our CHOP visit in January. The stomach is still slightly enlarged, but is slowly moving fluid through his digestive track. One way to tell if his dietary and kidney system were worsening would be I would have an increase in amniotic fluid. Thankfully, my fluid levels are right within normal range. Isaiah was moving the entire visit. He did not like being probed. It was rather entertaining to watch him on screen. So, even though he is not completely healed, he is stable and continuing to grow. Isaiah is in the 50th percentile for growth and development, and weighs approximately 2lbs. 4oz. This news was all very encouraging for us and we rejoice in the little blessings God gives us every day.

We have busy months ahead of us. I have to visit my personal OB/GYN every 2-3 weeks to monitor my health. On Friday, I see my cardiologist because my heart keeps racing and have periods of chest heaviness which makes me really uncomfortable. The doctors seem to believe it is all pregnancy/hormone related, but they want to keep me monitored. When I was pregnant with Josiah, I had similar symptoms, but this time around I feel worse.

Then at 32 weeks we head back down to CHOP for another intense U/S and echocardiogram. When I am about 37 weeks, we are planning to have an amniocentesis to determine for sure if Isaiah definitely has Trisomy 18. If he does, we will probably deliver at Grand View Hospital because Isaiah will only need comfort/supportive care at that time. If what he has is NOT Trisomy 18, than we will have to deliver at CHOP. The reason we are having the amniocentesis when I am full term is that if I do go into labor because of the amnio, Isaiah has a fighting chance to come home with us for a short time. The outcome of the amnio allows us to prepare for his birth and treatment. If I do not have the amniocentesis done, I would have to deliver at CHOP and the staff would take Isaiah from me at birth to do all the testing. We feel very strongly that if we only have a few hours with him, we want to spend his precious time together loving him and making as many memories as possible in a short period of time. Our hope is still that God allows us to bring Isaiah home for 2 months. This is our biggest prayer request.

One of the biggest lessons I have been learning through all of this is HOPE! God is taking us through this trial for a reason, and we may not know for sure what that reason is here on earth, but one thing I do know that every day God gives us something to attach our hope to. I have never been so thankful for kicks in the stomach or feet wedged underneath my ribs. When I get discouraged, or feel like I cannot go on, my little tiny son gives me a quick kick letting me know he is still with us and fighting to survive. A lot of times, Isaiah has been my encouragement, and he isn’t even born yet! Many times God brings a hymn to mind, “My hope is in the Lord, Who gave Himself for me.” This reminds me that Christ gave the ultimate sacrifice of His life for us, and we owe Him everything, even our son Isaiah. Also, when we are discouraged, someone led by God sends us a Bible verse that uplifts our spirits. We are reminded time and time again that, “When we are weak, HE makes us strong,” (II Corinthians 12:9-10). Thankfully, God does not require us to be strong, He only requires/wants us to lean on Him. “He gives strength to the weary and increases the power of the weak” (Isaiah 40:29).

Many years ago, I chose John 3:30 as my life verse, “He [God] must increase, and I must decrease.” Chris had chosen Jeremiah 29:11, “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you HOPE and a future.” Little did we know that we would be called upon to put these verses into action. But, God knew. A long time ago God started preparing us for this difficult time. Please continue to pray for us and sending us encouraging notes. We really appreciate it. Also, we don’t mind if you forward our emails onto your friends and families. The more people storming the gates of heaven for us and for Isaiah, the more we feel God’s power and presence.

Again, thank you to everyone for your prayers and support. We appreciate all the emails, letters, and phone calls. We will try to update everyone on a monthly basis. Eventually, there will be a blog for you to access to keep up with everything. When my mom comes up, we are going to start a memory book for Isaiah that will include all your letters and emails. This will help us to never forget God’s promise that we are not alone; “Where two or three are gathered together in my name, there I am with them” (Matthew 18:20).

May God bless you all richly!

In His Arms,
Chris, Joy (Emr), Josiah, and Isaiah Miller

Update on our precious unborn SON...

2008-11-06T15:22:00.000-05:00

Dear Friends and Family,

It's with a heavy heart that we write this letter. Yesterday we had an incredibly long and intense day at CHOP to figure out what was exactly wrong with our tiny, little, beautiful, unborn SON. Yes, we found out we are having a boy. We were very hopeful as we drove down to CHOP hoping for the best outcome. Unfortunately, God had other plans for us.

Our day started at 7:30am and ended at 4:30pm. We first had a 3 hour ultrasound, then an echocardiogram of the baby's heart, then an MRI of his entire body, and finally we met with the high-risk perinatologist specialist Dr. Bebbington and geneticist specialist Stephanie. Dr. Bebbington took us step-by-step through our baby's body. The news was devestating because our son has something critically wrong with almost every major organ/body system. It was hard to comprehend, especially since he is in constant movement inside of me, and on the scans he was always pushing against the probes. We will try to break it down for you as simply as possible, but we are asking that if there is something or some word you do not understand to please look it up online. Things are just too overwhelming right now to answer alot of questions. We are asking that you please be patient with us. We have alot to digest in the next few days and months.

Dr. Bebbington started with the brain. There is fluid on the brain possibly from a previous bleed or blockage, but they cannot tell exactly. The stomach is enlarged and not draining properly due to a blockage or narrowing/stenosis between the stomach and duodenum. The liver's duct system is backing up because there is no gallbladder and the body's toxins are not being filtered out. They call this biliary atresia which is life threatening. Now the heart---there is a hole in the heart between the ventricals so the blood is not flowing in the right direction throughout the baby's body. This is called ventricular septal defect. The right kidney is small and in the pelvis rather than in the right lower back. It is quite possible that it is not functioning. The most mild of the abnormalities is the left arm that is missing the radius and thumb and is bent at a 90 degree angle. Dr. Bebbington believes our little boy has what is called Trisomy 18, a chromosomal disorder (which will be confirmed at his birth). In the doctor's words, "Trisomy 18 is not compatible with life." This means our son may not make it to full term, and if he does he will not live longer than a couple of months. This is very hard for us, especially since he seems so alive in me. The doctor said the baby is doing ok right now because my body and the placenta are doing the work. But, once he is born his body would have to take over, and his little body can't do it. There is no cure. There is no surgery. There is only hope in our God. He is the Great Physician.

We know this is alot to take in. We are completely overwhelmed at this time, but we continue to take one step at time and are depending on God for strength and wisdom to see us through the future. The first Bible verses given to us were found in Isaiah 43:1-4a, "But now, this is what the Lord says--He who created you, O Jacob, He who formed you, O Israel, 'Fear not, for I have redeemed you; I have summoned you by name, you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you; when you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God, the Holy One of Israel, your Saviour. You are precious and honored in my sight, and I love you.' " We know we have been chosen specially to walk this road, to pass through these waters. Our prayer is that through this trial, God's name will be honored and glorified. He does not make mistakes. Even though our son may not seem put together correctly, God made him perfectly for us, and we will love him no matter what. We will treasure the time we do get to have with him.

We decided to name our son Isaiah (influenced by the verses above) which means "the Lord saved." His little mismatched body is already saved by our wonderful Saviour, and when God decides to take Isaiah home we understand that he will be saved from his little broken body, never to suffer. He will be made whole in heaven and Chris and I will see him again someday as promised to those who trust in God with their whole heart, mind, soul, and body (as King David did in II Samuel 12:21-23, Romans 10:9-13).

Continue to pray for all 4 of us, specifically for peace in the midst of this storm. Thank you already to those who have sent encouraging emails, letters, phone calls, and brought meals. We really appreciate it.

In Christ's everlasting arms, Chris, Joy, Josiah, and Isaiah Miller

P.S. The best way to reach us is through email. If we do not respond back immediately, please do not take offense. We are still just trying to digest everything. We will update periodically as the pregnancy progresses.

Here is video of a family who went through what we are now facing with Isaiah having Trisomy 18. We hope to touch people live's through this experiece as they touched ours.
http://www.youtube.com/watch?v=th6Njr-qkq0

Update on our precious unborn baby...‏

2008-10-31T21:39:00.000-04:00

Dear Friends and Family,
Some of you have not heard from us for awhile, and some of you we have been in touch with regularly. I know the following news will be a shock, but we felt the need to call on as many people as possible to pray for us and our unborn child.

Today we went for a level 2 ultrasound to hopefully rule out a 2 vessel cord and to look closer at the right arm. Unfortunately, the news we received was much more devestating than we were expecting. It turns out that the right arm is shortened, but it's the left arm that is significantly deformed. It is missing the radial bone and possibly the fingers. The way the left hand is bent into the arm made it difficult to visualize the fingers. The baby does only have 1 artery (instead of 2) and 1 vein in the umbilical cord. However, the most difficult news was that the baby's brain has an over-abundance of fluid in the ventricals, leading to a larger head. We don't know to what extent how the brain is involved.

Our next step is we are heading down to CHOP on Wed, Nov. 5th to have another intense ultrasound, and echocardiogram of the baby's heart and a MRI of the baby's brain. We will talk to neonatal cardiologists, neurologists, and genetisist while we are there. We will probably have to also have an amiocentesis to determine to what extent the deformities go (chromosomal vs. genetics vs. congenital vs. unknown reason).

As you probably can figure out, this has been extremely difficult for us. We do know that God is in control of everything, and has a purpose in giving us this gift of a child. We are heart broken and need support, so we are asking for alot of prayer support and encouragement. We will keep people updated as we know more.

Much love, Joy, Chris, Josiah, and baby-to-be

Bible verses we must cling to:

Psalm 139:13-16For you formed my inward parts; you knitted me together in my motherʼs womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you,when I was being made in secret,intricately woven in the depths of the earth.Your eyes saw my unformed substance;in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.Jeremiah 1:5 Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee, and I ordained thee a prophet unto the nations.