Friday, May 15, 2009

Finally we know!!!

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!!

7 comments:

Jessica said...

Melissa I have so much respect for you. You keep me moving. Reading your responce to my posting on through the tulips brought tears to my eyes. You really inspire me and I wanted to just pass that on to you. I think that you handle Josh and your family so well. You are an amazing person. Thank you for shareing all that you do with your readers.

Lori said...

Big hugs. I'm glad you have an idea of what's going on and a definite plan. Sometimes the plans are what keep you going day to day. Jaylee's journey was a lot like that. My heart goes out to you girl, keep pluggin along!

I heard a quote the other day that said "Women don't realize how strong they are until they are in deep waters." You're a strong woman, girl, you can do it!

Desiree and Lars said...

Yeah for a plan and for knowledge of what is going on! So glad you are getting things figured out. You are in our prayers!

Tanya said...

Ohh good, I'm glad you have a plan for now. However, I almost laughed when you said you weren't going ot post til you "had all the answers." Can you share some answers wtih me?! lol!

Amy said...

Hey big sis, at least you have good doctors that care about Josh. Not to mention he has great parents. I know that you guys have to do so much for Josh but he is such a special little guy. I wish I was around more to see your kids grow up. I am glad you are getting official answers but don't dwell on them to much. I love ya and you guys are always in our prayers.

Heidi said...

Keep up the good work. You are definitely an inspiration.

Tara said...

you are definitely one of the most inspiring mothers I know. You keep me going when I want to throw in the towel and call it good. Your boys are so lucky to have you!