Friday, October 8, 2010

Busy is Good Sometimes!



Makenzie, her therapists, and I have had a great time learning over this last week. By my estimation Makenzie knows the colors red, blue, yellow, green, and purple.  We also learned the numbers 1,2,and 3 which she was able to identify with eye gaze and touch with great accuracy. She loves to spell her name and listen to the letter song on her iPad. She has grasped puzzle pieces to take them out and put them back and while we have not been working on a ton of hand over hand she is holding a marker wonderfully!

We had a few appointments yesterday one of which was with our seating guy at the school. They have a pretty good chair for Makenzie but it still is not fitting her great and the head rest was a problem. We went because I still am hopeful that Makenzie will be able to go back to school at some point and seating is one of the issues that needed to be addressed, so address it we did. Her special education teacher asked when Makenzie would be returning to school. I told her that when the principle called me back we would talk about what needs to happen for her to return.

I have left a message with the office, and made it very clear to the staff that I would like to talk to him. I know he is reading this blog as well so there is no question in my mind that he knows that his call is being anticipated but for some reason the man has yet to call. To me it feels like he is playing games with me and that is quite unprofessional in my opinion. Maybe he is upset I contacted his boss.. I don't know but either way this is not about anything but Makenzie's education. Oh well it is Friday!

We left the school and went straight to the hospital to have a new button placed. The new button does not have a balloon so it is much smaller and lower profile the the Mik-Key.

Makenzie wanted nothing to do with laying on the table so they had to get another nurse to help hold her down so we could get the button in. Yes... I really did type that.... we had to hold Makenzie down....What a great thing if I do say so myself! It hurt my soul to see Makenzie so scared but the fact that she is moving and opinionated enough to need to be held down is quite an accomplishment in her recovery!

Oh and by the way... Makenzie did cry.... and yes...... we were at the hospital..... and no they did nothing more or less then what I did at home when I changed her button.... I'm just say'in. Oh wait.... except I had to ask the nurse if she was going to check placement. Hmmmm? She told me we could if I wanted to and then hooked an extension up, pulled back until she got stomach contents and wah lah we were done.

Funny thing is.... the last time I talked to my GI doctor about this subject the suggested policy to check placement of a g tube involved an x ray machine and contrast every time the tube was changed. Wonder why parents get harassed about policy but the hospital doesn't have to follow it?... once again... oh well!

Then it was home to eat and off to take my son out for his 13th birthday surprise. He was so excited when we pulled up to the cell phone store. He looked at me with a huge smile and said " I have you figured out!" So my now teenager also has a pretty cool cell phone! I am not sure about the rest of the world but most of his friends have had cell phones for several years so I thought it time.

We picked up some pizza and ice cream cake on the way home so that we could celebrate. We had a lot of fun and then headed to bed.

What a full day! I didn't even mention therapy, or the lunch date we squeezed in there as well! Now we are off to paint, color, read, and learn before we head back to the hospital for a GI appointment! Another busy day coming right up!

Believe... Prayer works!

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