Monday, June 8, 2009

Updates and Genetics

I thought I would get an update on here about how Josh is doing since his surgery.

He had a rough few days immediately after coming home from PCMC, but is doing good now. He still has a little problem with vomiting, but I think we have that under control for now...... I hope! His dressing changes are a necessary evil, but are going well too. He whines a bit through them, but no screaming or flailing around. He is such a patient little boy, he continues to amaze me.

Since he had biopsy's done at the same time, we don't have every single result back yet. But we have made a major break-through. After meeting with the feeding clinic a couple days before surgery, we had decided to take him off dairy when he went off food for the hospital stay. Since I was not on the ball like normal, I didn't make it to the Health Foods Store to buy his soy yogurt, pudding, milk ect before the hospital. So when he went back on food after surgery, it was non-dairy, but also no soy as well. Within 48 hours of surgery, his bowels were working normal! Since things had gotten so bad, this was truly amazing to us. And what was even more surprising was that he came home with some Lortab, which is extremely constipating and was still going normal. So at that point we realized we were onto something. So since he has also had a history of an egg problem.. and was off egg as well at this point, we realized we might just have his problem figured out.... 2 y ears to the day of his birth. So he is off Diary, Eggs and Soy and life is good now. Except the fact that we are trying to figure out what in the world to feed him. I have found some organic stuff that he can have, but for the most part, everything he used to eat is now off-limits. But we are so happy! Now if we could just get him to eat stuff by mouth... life would be even better.

Now onto the Genetics appointment. We went in last wednesday to see Dr. Rope, the Geneticist. He was a wonderful doctor and was so thorough and spent a good hour and a half with us in our exam room. Basically it is about what we expected.. meaning we won't have answers for awhile yet. But he did say he is 100% sure Josh has some sort of a Genetic Disorder, but what that is.... we don't know. He is going to start with a Chromosome Test and see what that says. We have a 10% chance that will tell us what we need to know. He looked at Josh for a really long time and told us that he was sure he has seen a picture of a disorder that Josh's facial features fit into. But he hasn't seen one in person. He took several pictures of Josh's head at all angles and is going to do some more research on it. At least we feel like it was a great visit and not a waste of time, and we hope to find some answers so we know what to expect in the future.

Until then..... we will be chuggin along as usual. Thanks to everyone who babysat, brought us dinners, or offered help in anyway when Josh was in the hospital and recovering that first week. We appreciate it soo much. It made things so much easier. We have the best family and friends! We love you guys!

6 comments:

Tanya said...

Well, I am glad you at least have great doctors who take their time and try to help. Not everybody gets drs like that.
I am also glad you thought to take him of so much and that it helped!!!

Jessica said...

WOw, this is exciting. I am so glad to hear you have found something that works. now...what on earth are you going to feed him??? Is it glucose free foods? Im a little uneducated on no dairy & no soy. Thank goodness we live in the days of the internet. My hat is off to you lady.

Amy said...

It's great that something is looking up you. Now you get to start getting creative with finding food he can actually eat. Good luck and maybe eventually the doctor can help with a offical answer. Until then at least Josh is a cute kid with a great personality. We love you guys!

Lori said...

man, you've had a lot going on. good luck with everything!!! thinking of you!

Chantel and Brian said...

I'm so glad his bowels are getting back on track. That's great. i can't wait till he gets his button. i want to see what it looks like. Good luck finding food for him.

Brittany said...

Hey, I was off soy, dairy and eggs for a while. It is tough to eat out or anything processed. However, I do have some things I could eat, so let me know if you need ideas. Poor Josh. Hang in there