Another follow up in Pittsburgh

its time for another follow up. It seems like just yesterday we were there but I guess it has been six days since we were there.

In six days Isaiah has gained 8 more ounces. He has now gained past his birth weight. He is 9 pounds and 4 ounces! Let me be the first to say he is a HORSE!!! We already had to get bigger bottles because he is eating 4-6 ounces every 2-3 hours. Yesterday he ate 18 ounces in less than 12 hours. We stopped in at the home health store to get the bigger bottles. Our dr wrote the prescription for 6 bottles. They informed us that they no longer bill the insurance for the bottles or pump. So we only got the bottles for now and will submit the claim ourself. For six bottles we shelled out $ 143.00. That was with the 10 % discount they gave us. Can you say OUCH!

Isaiah has had a knot on his head since shortly after birth. It is about the size of a fifty cent piece. I wasn't overly concerned at first but am becoming increasinly more so each day. They noticed it last week at the follow up. Then today I mentioned it again. They had two specialist peditricians look at it. They were a little concerned. They said it should be on top of the skull but his isn't They felt a bone around it. They said they will observe it next week and if no change then they will order a scan. So if you have a second this week then please say a prayer for the big guy!

We go back on the 20th.

I have some new pictures I need to post soon.
BTW, after each post you see a spot for comments. Please take a moment a leave a comment for us.

Have a good evening and will update again soon.

Amy

First follow up in Pittsburgh

We had a follow up appointment in Pittsburgh yesterday. It went well. They saw no problems with the NAM device except that I need to get it a little tighter when I change it next time. They weighed him and he gained 5 ounces since last friday. The NAM has sure helped with his eating. He is doing much better.

They have scheduled all appointments through middle of Janurary. We meet with the entire team middle of Janurary to start making plans for his first surgery.

Isaiah has his days and nights mixed up. Looking forward to him straighting those out.

Love Amy and Isaiah

and I can't forget his newly adopted grandma jackie...

Some proud grandmas....

1 week old

Here are a couple pictures. These are coming home from the hospital.
We went to Pittsburgh on Friday and had the NAM device fitted and placed. He did really well with it. Everyone we met was very nice and we felt comfortable with our decision. I think our deceiding factor was this... If we did not have the NAM device placed then Isaiah was guarenteed a bone graft surgery between the age of 7 and 12. They would take a bone from his hip and place it in his gum line to connect them. If the device was used then there is a 60 percent chance that surgery won't be needed. We felt that we owed it to him to try to prevent any surgery that we could. I also know that we know the MASTER PHYSICIAN and are claiming the surgey won't be necessary!
Since the device was placed he has started eating better. It looks like a retainer. We will start making weekly trips to have it adjusted. This thursday is our first appointment.

In closing, please pray for me. I love my baby so much. My heart breaks for him. I know that God has a plan in all of this. I know that we were chosen to walk this path for a reason but as a mom it kills me inside to know that he will have to go through so much. We just got him out of the hospital last night with jaundice. I know that this is all fixable but when its your tiny baby going through it, it hurts. Please pray that God will give me strength. BUT MOST OF ALL PLEASE CONTINUE TO PRAY FOR A COMPLETE HEALING FOR MY PRECIOUS BABY, ISAIAH!