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!

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...

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.

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

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.

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