Sock to the gut

I know I have shared this with a few of you, but wanted to get it written down not only for my own therapy, but for family and friends far and wide. It's also taken a 48 hour processing period with lots of emotional ups and downs.

Almost 2 weeks ago, I took Christopher to Yankton to see a neurologist, accompanied by a good friend. Due to the collapsing and what the PT thought of stares and pauses, Doc decided it be best to rule out seizures.

We met Dr. Isborg and he is a very kind and gentle with Chris. He looked him over and then ordered and EEG. He was asking if either one of the boys had any problems and I explained that Matthew has had leg issues, but as far as staring off in to space I wouldn't notice because Matthew is SO slow! I would think it was just him.

We left and went and did the EEG and Chris did awesome considering all they had to tie on to him and then he had to sit there. He passed out and then we had to wake him up the poor punkin. Halfway home, I looked at my friend and asked if we had learned anything that day and she said...no Jen! I was overly exhausted that day and was afraid I missed something!

A week went by with no results and I didn't worry about it. No cause for concern and Dr. Isborg, didn't seem too concerned. In preparation for genetics however, I decided that I had best find out the results so I could say...yes, we did and EEG and it said... Doc hunted down the results, but I hadn't heard from him.

After waiting 30 min on the phone on Thursday trying to get to Dr. Isborg, I was told he was off and he would call on Friday. To avoid it being missed I called Dr. Isborg.

Dr. Isborg didn't waste any time...the EEG did indeed show epileptic activity...is how he put it. I don't remember much after that. I didn't ask any questions. I just froze and tried to hold back my tears. He explained that he was putting him on meds and that he wanted to see him in the next couple of weeks for further work up. He also stated that he wanted to see Matt to be on the safe side.

He went on to say that he wouldn't be surprised if they find Sotos Syndrome. However, if it wasn't that, he was pretty sure they would find some type of syndrome. And that I could google Sotos Syndrome if I wanted.

I did...in the truck, on the way home from Omaha, on my little phone, through my tears...I read about Sotos. I'm not completely convinced that is what it is because he only has a couple of the symptoms and those same symptoms can be other syndromes too! Some of them will forecast his future.

I have just been kind of numb. Jason and I look at our pleasant, happy, content, healthy looking baby boy and my heart breaks to know that things are just unfolding. I know it's nothing we can't get through and deal with, but it feels like the wind has been knocked out of me.

We have lots of unanswered questions and still need lots of answers, but we continue to write down our questions and wait for our next appointment with Dr. Isborg in the next couple of weeks.

Jen, Chris' speech therapist called Friday night after I texted her and was beside herself. She was afraid she missed something, but I assured her she hadn't, because that would mean that I missed something. I told her that the frustrating part for me was that we were doing so well!

We have genetics tomorrow and I am taking a voice recorder and a notepad so I don't miss a thing. At this point, so much is up in the air as we only have pieces.

Andrew

Andrew has been on the ball today. I think it is because I am leaving for appointments with Chris.

This morning I was folding clothes and as I was folding them, Chris was unfolding. I looked at Chris and said...child, I'm gonna send you to Egypt.

Jason then pointed out that probably wasn't a good part of the world so I changed it to China.

Andrew's comment was: "Tell them thank you for making my shoes! What? They said made in China!"

He's been on the ball since. We did however instruct him on the importance of when to say stuff and when not to. The bad part is, his funniest moment today was during this conversation,b ut for the life of me can't remember his exact words!!!

I guess he's showing his side of the Shoemaker wit! However, I feel lots of comments being made in parent-teacher conferences in the future! :)