Finally, another check on my list!!

Sooo, I finally got Thomas' blood drawn.  Yesterday after his Occupational therapy appointment, I grabbed the vials and walked into the urgent care portion of the CHOA at Mt. Zion and asked to speak with a Lab Nurse.  She listened to my plea and explain the purpose of the vials and it did help that I had Thomas running around at my feet dressed all cute for his school pictures! Sucka!!  Just kidding.  Anyway, she had to make a few phone calls but she did come back to me and say they would do it but that I would have to pay $20 dollars cash.  I hope she didn't think that was going to deter me because I was more than happy to pay the money for it.  It was another hour after that until we finally got called back, but the sick children do take precedence and I am okay with that.  I didn't like the fact that Thomas had to play with sick kids while we were waiting, but you can't keep a good man down.  We just washed him afterwards.  Thomas did well with the blood draw, I thought.  He didn't like the band being tight on his arm or the bee she used, but the needle itself wasn't much of an issue because once she started loosening things he was better.  Although the blood was slow going for a bit and then he let out a good scream and bam we were done!!  I cannot tell you the amount of relief that I had leaving there yesterday knowing that after four months of putting it off and then searching to find someone to do it, its done.  We have two vials off for the genetic mapping and the third vial is off to Madison, WI for the clinical trial for people with KFS. 

It never ceases to amaze me that the things I think will be easy usually aren't and the things I dread sometimes end up not being that bad.  Silly me!! You would think by now I would have learned that I am not in control and that God is the only one who knows therefore it is a waste of our time to worry and fret.  Instead we should just trust in him and be deliriously happy with all that we have!!

Occupational therapy has been good!! We love our OT!  She is impressed with what all Thomas can do and is working with him diligently on his weaknesses.  Its great because at his age it all looks like play to him!! Although they are asking a lot of him lately and he gets tired and does show a bit of attitude, but its not like you can tell him we are going to therapy and he can pout and throw a fit.  We are seeing improvements and that is fabulous!!  We also see the different ways that he compensates for his weaknesses.  He was to take two popper beads a part and when he couldn't do it, he pressed the beads against his chest for leverage and was able to do it.  While he defeated the purpose of using his hands and arms, he still accomplished the goal.

We had our first speech therapy appointment this morning which was truly interesting to me.  As I had wondered how you were going to sit down with a toddler and get him to start saying words that he isn't.  Instead I learned that children with low tone and muscle weakness have an issue with being aware of and using all of the parts in their mouth that are used to form words.  So, we worked on him imitating raspberries and showing our tongue and things of that nature.  Of course, Thomas had his own plans most of the time but would eventually obliged and play.  We also discussed getting him to strengthen those muscles by changing what he eats and the way he drinks.  He may not be happy with me for a while, but its all for his own good!!  He definitely jabbers enough that he has the motivation to want to talk more and say what he wants and throws in a few words here and there that are understandable.  Its all a learning experience for us all, but it will be really neat to see him improve and increase the use of his mouth for speaking and eating.

Still chugging along doing all we can for Baby Thomas.  We are preparing for our trip to the Shriner Hospital.  Our Shiner has been in contact and is very excited!! They are making arrangements for our hotel room and travel.  I also found out that we meet with Orthopedic first thing in the morning and then imaging and diagnostics which means they are going to take their own images of him to examine!!  I am looking forward to the trip!!