Thursday, March 5, 2009

Long time no post...Sorry... this one's gonna be a long one! lol

Hi everyone...

I am sorry it's been so long! Things here have been nutty! Matt got the job transfer and is now working in Manhattan, I was feeling a little under the weather and the kids have been keeping me hopping!
Katie has been doing great. She's marching in our neighborhood's St. Patrick's Day Parade with the cheerleaders this Saturday. She's loving school and doing so well! She does still ask about Florida and if we are going back and tells me that she misses her friends. Even though I know she misses Florida she has made quite a few friends here and really has carved out quite a little place for herself. I am so lucky that she is such a happy and adaptable kid.
Matt is ok with working in Manhattan. I know he really liked living in Florida and that he is not a fan of living back in NYC but he knows how important it is for him to be as involved as possible in all of this and I think that he really wants to be as involved as he can be. The kids have been thrilled to see him so much more. Last week we saw him for 3 days and he just left from being here at my mom's for the past 2 nights. It was good because he was able to come to MSKCC with us yesterday for Mike's PT & OT sessions.
I have to admit, as good as it is for Matt to be there for Mike, I wanted him to be there for selfish reasons. It's hard bringing Mike there. Mike is a smart kid, he knows when we go to a certain elevator bank that we aren't going to 'number 9' as Mike calls the Pediatric Day Hospital but to the first floor and the PT/OT offices. It's odd to think that he is ok with going to the PDH but really, despite the accessing and check-ups, he likes it up there. He likes the play room, he likes the activity, they have video games and computers and the poking and checking is only a couple of minutes long. And I am there with him every step of the way. I don't leave him anywhere up there unless he is in the playroom by my dad or whoever came to MSKCC with us that day. For all of the good things that he likes about the PDH, there are so many things he doesn't like about PT & OT. PT and OT are hard on him. They work him for 45 minutes each session, he is uncomfortable and he is afraid. And I am not there in the room. I sit outside while he builds himself back up in there. I can't be there because he relies on me for too much and he won't do as much if I am in there with him. So, I hand him over to the therapists while he screams and cries and I sit there, listen to him scream and cry in the room and wait for them to bring him out. I needed Matt to see that, I needed him to hear it, I needed him to know that sitting there waiting for Mike to come out of PT and OT is as heart wrenching as any other appointment when they are poking him. And still, while it is exhausting and heart breaking to sit there, he comes out and immediately is ok when I take him from the therapists. He laughs and says good bye and asks for his Buzz Lightyear jacket and SpongeBob hat. I can really learn so much from this little boy. He amazes me at every appointment.
So far, the therapists have not come out with a bad report. Aside from the screaming and crying, he does it all for them! He throws the balls, he rolls over, he builds with the blocks, holds the crayons and, get this... he will stand with their help! his knees will buckle but he will get up as long as they are holding him. That has been great but on Wednesday he shocked me. It was the best surprise! The teacher from the Board of Ed, S., was here working with him. She was on one side of the coffee table in the living room and Mike was sitting on a stool on the other side. He wanted something that was on the floor. All he kept doing was pointing and saying 'that one', 'that one'. She didn't know what it was that he wanted and there were a bunch of things on the floor so he finally got mad enough, reached out to the table and STOOD UP BY HIMSELF holding onto the table!! I was soooo excited! He hadn't initiated standing by himself since Christmas Day so this was HUGE! The therapists were thrilled today when I told them that he did that.
Anyway, on top of how well that he has been doing with PT & OT, his counts have been staying strong too. His numbers are all in the normal range and he's been acting great. I think his favorite activities are playing with Katie and singing at the dinner table! He is such an amazing kid!
Now, even though I am being cautiously optimistic about things I am losing my mind about Monday. I am a mess about Monday. If you don't know already, Monday is d-day, the MRI. I am hoping and praying with every part of me that we get good news. Please, please, please keep us in your prayers that the MRI shows something good!!

I hope you all have a wonderful weekend! I will be sure to post pictures of the kiddies in the parade! :)

Love to you all,