The House of Doo

The House of Doo

Tuesday, October 6, 2015

I'm Back!!

I have been itching to update my blog lately and when I finally pulled it up to get started, I realized that I haven't posted since March! It is now October! I am so far behind! If I updated everything, this would be a REALLY long post, so I will try to keep it to the basics.

Colt finished up at Siskin and we miss it a lot. However, he started Pre-K in August! He loves it most days, but we are struggling with his behavior. He is in a "typical" classroom of 23 kids. That's a HUGE difference from Siskin so I expected some adjustment time. We are almost two months in now and it is still a problem. We'll hopefully get things under control soon. They have called in a behavior specialist to help come up with a behavior plan to see if things will change. Here's hoping.

Around the same time Colt started school, we found out we were pregnant. Colt was less than thrilled, but he seems to be coming around. When we found out the baby is a girl, he got more excited. I think it will be a huge adjustment (of course!) but I think Colt will be a fantastic big brother.

Some other things have changed for Colt, too. Some time this summer, Colt had his third MRI to check his brain damage. The MRI showed the damage had cleared up - seemingly on it's own. Everyone seemed so thrilled! I didn't share on the blog because, to be honest, I was very frustrated by that. Let me TRY to explain. For 4 1/2 years, Colt has been different than the other kids. He has "significant developmental delay", nystagmus, strabismus, amblyopia, he didn't talk until he was well over 3, he has hypotonia, he has macrocephaly, he has right-side body weakness (stroke-like symptoms), and he gets speech, physical therapy, and occupational therapy every week. He has some severe sensory issues and is being evaluated for high-functioning autism. When we knew that he had this brain damage, it EXPLAINED these symptoms and their connection to one another. Now, the MRI is clear and yet, he still has all of these symptoms. So if the brain damage didn't cause these things, WHAT DID?!?

I have struggled with this for months, but you know what? I think it's justified. As of the past few weeks, we have noticed another thing. Colt is having what we (and his neurologist) believe are mini-seizures, also called absence seizures. They look a lot like daydreaming but for about 20 seconds, he is totally unresponsive. When it's over, he looks pretty confused for a few seconds, then carries on with what he was doing when it started. We started to really get worried last week when it happened in the middle of a restaurant during dinner. It happened again the next morning when I was trying to get him out of the car at school. Ryan and I decided it was time to call the neurologist. We called him and left a message with his nurse on Wednesday. We didn't hear anything until Friday evening when the nurse called and said our neurologist wanted Colt in his office at 8 Monday morning. Yesterday was the day. The doctor thinks they are definitely mini-seizures, but we have to confirm them with an EEG that is scheduled for November 9. It will be at the hospital and last about an hour. If the seizures don't show up there, we will have a 48 hour "take home" EEG after that. The neurologist says that if they are to the point of interrupting his dinner, he would be confident enough to go ahead and put him on medication now, but the EEG will help us know exactly what is going on.

He talked to us for a long time. He feels like we are not to the bottom of the Great Colt Mystery yet. He says the MRI wasn't a huge success because every single day, an MRI will look different. Seems kind of pointless to keep doing them to me, then. Anyway, he says he still believes there is an underlying problem that we haven't found yet. He says that the older Colt gets, it manifests in a different "symptom" and maybe as he gets older, we will have enough pieces of the puzzle to figure it out. He says it could be genetic or it could be a brain structure issue. This is why I am frustrated - the second MRI did show a brain issue and we thought we had our cause, now it's gone and the symptoms remain - and keep coming.

So, I have been struggling lately. I just want to know what is going on with my boy. I want to understand. I hate all the doctors, I hate all the testing, I hate the constant "study" of him and the evaluations and the questions and the stares when he melts down in public, but I want to understand him. I want him to have someone (two, with Ryan) that "get it" and that can support him. I want him to know we don't think he's weird, that's he's special and fantastic the way he is. It all sucks, but the evaluations help him get the services that he needs to have a successful life. So that's where we stand now.

Also, knowing it could be genetic scares me for our baby girl. Sure, it isn't anything horrible and it could be so much worse, but it has been a long road for Colt. It's a lot of doctors, a lot of tests, a lot of surgeries, a lot of therapies, a lot of evaluations, and some days are just too much. I don't want her to have to go through it, too.

By the way, her name is Collins Everly and she is due April 6, 2016.


  1. Colt is very special! I don't know what makes him that way but everyone loves his contagious smile and sense of humor. I know you want answers and maybe some day you will have them. But in the meantime we love him the way he is. Don't worry about the "looks" for his meltdowns. There's just some people who don't like kids and surely doesn't begin to understand them. You and Ryan are wonderful parents. I cannot wait to meet Collins! She's already on our roll in SS. ETA: April