I have been waiting to write about what is going on with Josh until I had all the answers.
First of all, his upper GI test came back good, just showing the severe reflux with the NG tube in. The doctor hasn't been sure about whether or not to have him have a Nissan procedure done. That is where they go in and surgically close off the valve so nothing can come up anymore. After talking to a couple other GI doctor's and then to me today, we finally have a plan. With the problems he is having with the NG tube she wants to get the G tube placed as soon as possible. So we are going to go ahead with that and up his meds for reflux and see how he does after the site heals. His GI doctor can do the G tube surgery, but a surgeon has to do the Nissan surgery. Since that can take several weeks, we both agreed it would be better to wait and see if things get better with the NG tube gone. I don't want to put him through anymore than he has to be, so I feel pretty good about this. So she is going to get his surgery squeezed in the schedule sometime in the next couple weeks. Scott and I are going down to PCMC to take a class on the G tube and how to deal with it next week. Then we'll be all set.
Josh's neurology appt went well. He was officially diagnosed with Dyspraxia, a motor planning disorder. He has several other diagnosis as well and the Dr. is doing a formal 'on paper' document for everything. We have a great neurologist! We love him! He did remind me that even though most kids with SID and the problems associated with it eventually get better (not perfect), we are forgetting his Microcephaly diagnosis and how much that plays a part in all this. All of his problems stem from Microcephaly and therefore compound the issue. His head size is still below the bottem curve, but he is doing OK. He just gently reminded me that Josh will never 'catch up' or be 'normal'. He will always have problems and need extra support and medical help. But we are doing the best possible for him and he has some great therapists that are on top of everything. We hope his appt with the Genetics doctor on June 3rd will shed some light.
So that is where we are at. The only other change we have had is a new formula. He was put on something called "Elecare" that is the most hypoallergenic you can get. The GI doctor and dietician is still convinced there is something else going on with him and now that the insurance is helping cover the expense (since it is going through a tube) we can finally afford it. We'll see how well this goes. Keep checking back for more updates!!
1 week ago