Thursday, March 24, 2011

Deacon Update

Medical updates:

1) Labwork: The doctor called with results from the Methymalonic Acid Test, which gives a better indication of his B12 level. The highest end of the normal range is at 318, his was 321.

Guess what this means??

Inconclusive... What the heck! Can we not get a straight forward result for ANYTHING!?!

She spoke with the Geneticist again and they said abnormal usually is in the 1,000's, so they don't think it is the cause for the seizures. But, they want to do the test again.

2) 24 hour EEG: On the bright side, the hospital called yesterday and there was a cancellation, so they are now able to admit him a WEEK early for his 24 hour EEG. A week may not sound like much, but I could possibly be THE most impatient person in the entire world, so 168 hours sooner is fantastic! Not only that, but I am a teacher and the other dates we had scheduled fell on TAKS (state standardized test), and those are the worst days to miss.

We will also get his labwork re-done while admitted and b/c we will be in-patients, the hospital does the labs themselves, getting us the results much sooner.

Deacon updates:

Deacon has been in a great mood these past few weeks with lots of smiling, and some laughing and eye contact too. His coordination has grown leaps and bounds. He stumbles very little now and has improved at getting around obstacles.

I am trying to be an optimist in all this, but don't want to paint a false picture of how everything is effecting him.

You know how babies faces light up when they hear or see their parents? We very rarely get that. Most of the time there is no recognition in his eyes when he looks at us. It is like he is seeing us for the first time every day. He will wander around our house aimlessly and doesn't seem to notice or care whether or not we are there with him. He will let us hold him as long as we like, but doesn't initiate contact. He turns his head when we lean in to kiss him.

It is hard to see some of the milestones he previously hit disappear. Deacon was saying "mama", "dada", and "bubba" at 5 months and now is at least starting to be vocal again, but will mostly hum or make an "a" sound. He is still having trouble holding his bottle while upright, and wants nothing to do with a sippy cup (I have an upcoming blog dedicated to this topic alone).

The medicine has greatly reduced the spasms, but they are still happening up to about 10 times a day. Half the time he catches himself before he falls, but the other half he doesn't. He has constant cuts, bumps, and bruises on his face. Because of this we are looking into getting him a helmet. I know it sounds so terrible on my part as a parent, but I have really been delaying getting him one. Everyone who knows about his medical issues and then meet him are so surprised on how "normal" he looks. I don't want that to change. I don't want him to look "different." I don't want kids at the daycare to stare at him or ask Carson what is wrong with his brother. But, it is getting to be a safety issue, and I will choose that over something as stupid as vanity any day. And, he would wear it mostly just at daycare, where he typically gets injured more often because of the amount of cribs in his room to be bumped into.

Some days all of this can be a little tough to swallow.

But other days we catch a glimmer. The recognition. A laugh. Leaning his forehead against us as we kiss him. Snuggling tighter or laying his head on our shoulder when we hold him. That is what we are fighting so hard for. He is in there and he is relying on us to find an answer.


Sophie's Story by Elaine said...

So sorry. I wish I had more words of comfort. I can't remember if you blogged about it...if so just direct me to the date of the post...but what therapies is Deacon getting? Sophie was never dx with Autism but I am a HUGE believer in ABA therapy. Sophie got ABA through Early Intervention and it is NEVER too young to start. If you want to know more about it and how we qualified for it just let me know.

By the way, a week is a LONG time. So glad you got in earlier.

The Scott Family said...

He is receiving Occupational, Developmental, and Vision Therapy. After his hearing test, he may have a Speech Therapist, and the VI person is going to have the Orientation and Mobility Specialist come to meet him too.

I haven't heard of ABA before, do tell. I know his gals work with him on eye contact and interaction during their visit, but is it more than that?

Anonymous said...

You sound like you guys are doing everything you can to help Deacon. Please do not be concerned what others think i.e. the helmet. You are doing what is best for your boy!

Sophie's Story by Elaine said...

Sophie was 2.5 years old when she started ABA (wish it was earlier but I never heard of it until then). She didn't talk and she didn't use sign language. Within her first session, she signed "more". ABA stands for Applied Behavior Analysis. There are several techniques under ABA but mainly there is discrete trial and verbal behavior. Sophie received verbal behavior. It's an intense therapy. Those with Autism may get around 20 hrs/week. The most Sophie ever got was 12 hrs/week which was enough for her. But she started off with only 6 hr/week. She learned so much through ABA.