Thursday, December 31, 2009

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

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!

Thursday, December 24, 2009

SURGERY WENT WELL...‏

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."

Monday, November 30, 2009

REFLECTIONS

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.

Wednesday, November 4, 2009

MANY APPOINTMENTS, MANY UPDATES...

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!

Saturday, October 17, 2009

CALLING ALL PRAYER WARRIORS...

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

Saturday, October 3, 2009

And finally, some more pictures.


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...

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!

Friday, September 18, 2009

FUNDRAISER FOR ISAIAH...

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...

Saturday, August 29, 2009

ISAIAH'S SURGERY...

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.

Wednesday, August 19, 2009

Magazine Support - Angelina

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

Monday, August 3, 2009

JUNE AND JULY UPDATES...

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.

Tuesday, June 2, 2009

SO MANY PRAISES, SO MANY THANKS...

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

Saturday, May 9, 2009

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

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!

Saturday, May 2, 2009

SAVE THE DATES...

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!

Tuesday, April 21, 2009

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

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!

Tuesday, April 14, 2009

Some more pictures

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


















Saturday, April 4, 2009

We're back online...

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.

Saturday, March 21, 2009

Update....


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.













Tuesday, March 17, 2009

WELCOME HOME ISAIAH!!!

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...

Friday, March 13, 2009

BUMP IN THE ROAD...

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.

Tuesday, March 10, 2009

MIRACLES ARE NEEDED...

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?

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

Saturday, March 7, 2009

Some More PICTURES...

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.





Thursday, March 5, 2009

PRAISE THE LORD, ISAIAH POOPED!

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.

Sunday, March 1, 2009

1 WEEK DOWN, 1-3 WEEKS TO GO!

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

Thursday, February 26, 2009

He's OK.




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"

Wednesday, February 25, 2009

Some Good News but still Need Your Prayers

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, February 23, 2009

Monday's Status

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.

Saturday, February 21, 2009

No Surgery Tonight - Saturday

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

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.

Friday, February 20, 2009

First Pictures


OUR SON HAS ARRIVED!!!

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

Sunday, February 15, 2009

IMPORTANT INFORMATION----PLEASE READ!

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.