Tuesday, February 28, 2012


To some this picture might not look like regression but it is.  We went to Houston this weekend and we stayed Saturday night at a hotel.  It reminded me of the last time we checked into a hotel.  The last time we checked into a hotel we were worried about getting kicked out because of how loud Matthew was.  At the time Matt didn't really sleep and all of his waking hours he was running, screaming, banging, playing etc.  We got calls from the front desk and people in the surrounding rooms got relocated.  We apologized but not much could be done about it.  Saturday night we got to the hotel and Matt played in bed.  When I left the room he got up and went to the door and played a little but then back to the bed he went.
To most this might be explained away with age and maturity.  It is a good thing he has learned to be quiet and to play more appropriately.  That is not the case, Matt no longer has the energy to be that loud.  Matt still doesn't sleep and doesn't put himself to bed, we have found the right combination of meds to get him to sleep and stay asleep.  You would think this would just give him more energy but it doesn't.  Even at home the most common place to find him is laying on the couch.

Monday, February 27, 2012

Mitochondri-Y'all Social

We had a great weekend.  We traveled to Houston to to go  a mito social.  It was so nice to meet other moms who are going through or have been on the same journey as me.  It was nice to hear other moms whose doctors thought they were crazy at some point.  It sucks to be thought of as crazy but nice to know I am in good company.  : ) 
I haven't updated in a while, probably because Matt was doing so well.  When Matt is making progress it is so hard not to just enjoy everyday.  When Matt lost his language people would always tell me, you want him to talk so bad but when he starts all you will want him to do is be quiet.   I remember thinking that would never be true, and so far it hasn't been.  Every new sentence he says that I can understand I cherish.  I can't imagine a time I don't feel that way.  
Last week Matt started to regress again.  On Sunday I noticed I was having a harder time understanding him.  I pointed out to his ST and she noticed it as well and said that she hoped it was just a phase and not that he was going into a regression.  On Wednesday we had our monthly PT eval and he did worse than he has been.  His balance was awful!  I hope this is just a short regression and isn't going to last.  I can't imagine starting his regression this early if it is going to last so long.  
Today Matt had his ST re-eval.  It was he first eval he had done worse in than  thought he would.  They were judging his intelligibility to be 30% with context clues and 10% with out.  I was guessing he was at 40.  
Wednesday is his PT re-eval, I will be curious to see how he does.  Six months ago I thought he would be release, his Gross Motor skills don't seem that behind to me, so I will be interested to see how he does.  I think the biggest fear is if they stop him regressing even more. 

Friday, February 24, 2012

Will try to update soon but had to post this.

Reasons You Should Think Twice Before Messing with a Special Needs Mom

A fellow special needs Mom shared this on Facebook so I thought I would share it here
1. Some of us have given up on social skills and don't care what we say or do.
2. We're not afraid to have A serious "meltdown" of our own.
3. We are tired and all the patience we have is for our kids

4. We have A far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.
5. We can get you in a hold/lockdown position in less than 3.5 secs.
6.We can shoot you a look that would make a linebacker tremble in his boots.
7.Chances are it's been awhile since we've had a full night of sleep and that will give us a reason to plead insanity.
8. Our tolerance and patience is for our kids who didn't choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.
9. We're probably already on edge and it would be stupid to push us over.
10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?
11. We've had to fight from the moment of our child's birth so by the time you make us mad we're seasoned battlers and could win a war.
12.We devote our lives to our children and don't need more stress and people who don't understand our life.
13. Wherever there is a cub, there is a mama bear...We're always watching!

Tomorrow we are going to Houston for a mitoaction social.  We have been looking into the possibility of Matt having a mitochondrial disease.  

I will try to post again soon to let you guys know we are again at  stand still in Matt's dx process.