Saturday, April 24, 2010


Isaiah recovered quickly from surgery and we were able to come home late, last Saturday night. Isaiah did have a hard time recovering from the anesthesia and was on oxygen for the night. He kept having apneic episodes where he would stop breathing, then drop his oxygen levels and heart rate. We knew this would happen, so we were all prepared for it. Unfortunately, every time Isaiah has had surgery, he has been having a harder and harder time recovering. Hopefully, as he becomes older, he'll have an easier time with anesthesia. One of the anesthesiologists feels he may have a metabolic disorder that doesn't allow him to metabolize medications properly. However, there is no way to test for this, so we just have to be diligent in our observation of Isaiah.

Isaiah is pretty much back to his normal, busy little self, with the addition of a big bright orange full arm cast. He continues to use the right arm and fingers (except for the thumb) as if nothing happened. What he doesn't realize is that his cast is like a really hard weapon that hurts us when he hits with it. He thinks it's funny when we try to duck out of the line of fire;) We go back to Dr. Chang on April 30th for cast removal, x-rays, and a splint. We will have a better idea at that time how the new thumb is healing. It will take about 6-8 weeks for the new thumb to have any movement.

The upper endoscopy also went well. We received the results of the biopsies a few days ago. Other than a little abnormal inflammation in the stomach and the puckering of the pylorus, everything else appeared normal. The GI specialist feels that the food aversions and throwing up may be all behavioral. I am not fully convinced that that is all it is. Time will tell.

Before Isaiah's surgery, we went to have his hearing rechecked. Thankfully, since his ear surgery in December, his hearing has improved significantly. He had 40% hearing loss, but now is back in the normal range. We are just so thankful to God for restoring Isaiah's hearing.

Thank you again for all your prayers and support. We truly rely on the strength of God's people to carry us through. Thank you for the letters, emails, gas cards, cleaning our home, and for the dinners. Many of you have helped relieve alot of pressure off of me. We can't thank you enough for your kindness! "Therefore encourage one another and build each other up, just as in fact you are doing,”
I Thess. 5:11

Here are some before and after pictures that Dr. Chang sent us of Isaiah's hand surgery. It's quite amazing! Who would have thought you could make a thumb out of a finger?!?!?! "For I the LORD thy God will hold thy right hand, saying unto thee, Fear not; I will help thee," Isaiah 41:13.

Friday, April 16, 2010


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

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

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

Thursday, April 15, 2010


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

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

Monday, April 12, 2010


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

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

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

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

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

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

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

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