Friday, August 19, 2011


I have had a great summer! We have had a great summer! Why do summers always fly by so quick? One minute Sarah is out of school, and before I know it, she is back in school again. It happens every summer. Summer is always my favorite season. Less bugs and germs around. It's a chance for me to recharge my batteries and enjoy life a little bit extra.

My summer started off to a rough start with 3 pneumonias in a row, followed by uncontrolled seizures. Not my favorite way of saying hi to summer, but I got over it, and have felt really good this summer. I spent 1 (!) night in the hospital during Sarah's whole summer break. That must be a record.

My favorite thing to do in summer is swimming! I still fit in my floatie, so I have enjoyed our pool a lot again. I also love to simply hang out with my family in the backyard on my therapy mat. I have also taken more naps outside this summer. There is something with the fresh summer air, especially after a long swim.

I have also found a new favorite place in our house - our basement. I like our new finished basement since it is always cool down there. I can do my therapies down there, and I have the whole floor to spread out on when we gather in the family room. I can also start to fully use my remodeled bathroom, since my bath chair as of today has wheels on it! That will make bath time easier on mom's and Gemma's backs.

Summer is also the time when my mom and dad try to reduce my medications that have been added on over the winter. Last year, my seizure medications got out of control with me being in and out of the hospital for 2 months with seizures. I can proudly say that we are completely off 1 medication, and almost off a second seizure medication. I feel so good! I feel more alert, I try to verbalize all the time if you study my lips carefully, and I smile more again!!! I focus better! The next big undertake is to replace 3 of my big gun seizure meds with 1 new seizure medication that is soon to be approved by FDA. We'll see how that goes...I am a bit scared, but also excited if it can work.

School is also around the corner. Sarah went back yesterday. She started in a new charter school, and Sarah and my whole family are all excited. She is off to a great start!

I am going back to Bal Swan, which I am very excited about. My school chair got refitted for me today, since I have grown a lot in a year. School meetings are getting scheduled, and paperwork is getting filled out. Mom went to my follow up IEP meeting today, and she is proud to say that not only do I get to go to my favorite school, but the school district acknowledged that this is the BEST school for me this coming year. It was THEIR decision to put me in Bal Swan, not mom's (even if she agrees). It is all technicalities of course, but the difference is now that the Special Ed team at Adams 12 will stay involved in the coming year to get to know me at Bal Swan, so we can figure out what is the best school for me next year. A big win that hopefully can help other kids in a similar situation to me.

You all know that I love school. I love my buddies, and all the cool things I get to do in school, BUT I am also holding on to summer for just a little bit. With school, fall is around the corner and another respiratory season to get ready for. I am not ready just yet, so let's plan for more days at the pool and in the backyard.

Much love,


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