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!

1 comment:

  1. Joy and Family,
    I received your information from Anita Fordyce. Ever since she has shared your story with me, I have been reading your postings and have found strength and comfort by all you have written. I am now 17 weeks pregnant and our daughter has been diagnosed with Full Trisomy 18. Isaiah's journey has given me great hope. You and your family have been in my thoughts and prayers. My two teenagers are receiving the sacrament of Confirmation on Sunday. This evening they had practice and Isaiah was on my mind. I have lit a candle at the church and said a prayer that God will watch over him through this procedure and offer you strength as you wait. I will watch for your update. With love and prayers. Lisa Duffy,