Really? Again?

We did have another trip to Children's Hospital, but fear not, it was only for his appointment with the Geneticist. I would love to say that it was a fantastic appointment where we were given heaps of hope and inspiration that yes, things will start turning around. Well, if they are turning around, it seems as though it may be the wrong way. She talked to us for a bit, once again we told the whole story, (which she already knew, but needed to hear it in our words.) It is confusing, first we met with the genetic counselor (December) where she asked about every single family member that we can remember, moms, dads, siblings, aunts, uncles, cousins, grandparents, even into the greats. We had to tell her of any illnesses, complications, last bowel movement, you get the jist. Then we came back today to meet with the Geneticists, she was most likely one of the most intelligent people I have even had a conversation with, and had great bed side manner. Anyway, the results of the day.....

Oliver has two funny chromosomes, I too have these same abnormal chromosomes. We are chromosomally defunct. Since I am normal (yes feel free to laugh, but they did say I was normal =) his condition is not related to this.

She said that she is almost positive that there is much more to the picture. Oliver is displaying way too many signs and symptoms for it to just be Agen. of Corp. Coll. (ACC) As if dealing with "just" that isn't enough. Here are the options we are now facing.
#1-- She thinks that there is more missing or way underdeveloped in Oliver's brain. The fact that his head stopped growing 5 months ago is a bad bad sign, especially with the fact that he is not really reaching milestones. It could be many many things with the brain, just more malformations, or something associated with a syndrome/ illness/ disease/ who knows. Some are very serious, some not, just major developmental issues, which we face already. (Please "just" let it be that)- our prayers
#2 Something is very wrong with the rest of Oliver's body. She noticed that he seems very stiff and rigid, head isn't growing, etc. If there are not other major abnormalities with his brain, there are abnormalities somewhere else and this could have caused his brain to stop growing. She was very professional, but honest. There will be many labs in our future and more testing and she did prepare us that this could be something life threatening (and it could not).

Next step- She said that Oliver is a very complex case and this is going to take time. She said we need to have the MRI re-evaluated. It is going to be done by, in her words, the best Pediatric Radiology Specialist in Minnesota. Cha-Ching$$
Sometimes I wonder if someone up there is subtly trying to whisper something into my head to prepare me. We were at urgent care with Oliver a week ago and the doctor heard about Oliver's ACC and broke down in tears. Her son passed away of something that we found out today Oliver may have, she said Oliver looked just like her son. There have been other strange things too (I could write all night). Don't get me wrong, I am not sitting here expecting the worst, but right now we know it is out there floating around. I am going to continue to wear my mom goggles and think that he is fine, perhaps this is all a big mistake. OT is still going great and we are making progress baby! I think sometimes it is okay to live in Lala land. We enjoy our trips there. And yes John proof reads these and as mentioned in an earlier post, I am crazy, you don't have to call to ask.
So now guess what, famous words, we WAIT! See what the radiology specialist says and go from there.
We are pooped. Just when things are looking up we get hit again. Pooped!

**If this was confusing, I agree, we are still sorting it all out in our heads too.**