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Wednesday, August 29, 2012

MITO SPIRIT NIGHT!!!!

To ALL my Friends:
Please come to Mito Spirit Night!!!!
 Chick-fil-A
8492 Hwy 51
Millington, Tn
Chick-fil-A will donate a portion of their profits to the UMDF! Bring the flyer with you!
LoVe,
Jack Jack
 

Tuesday, August 28, 2012

So why haven't you posted?

This summer I didn't post anything on this blog. At first I didn't blog because I was so busy with the kids. Then decided to concentrate on just having fun with the kids and let the blog go for a while. We made a list at the begining of summer of all the things they wanted to do. We accomplished most of the list.

Jacks health:
Jack has been doing GREAT for a child with Leigh's. We have not had a hospital visit since May of 2011. I give God all the glory for Jack's life and health. Like I have said before we keep him at home as much as possible. Everyone that comes into our home washes their hands before they have contact with Jack. We keep him away from as many germs as possible whenever and where ever we are. Elizabeth and Wesley change clothes when they come home from school. We protect his rest as much as possible. I work all of his appointments around his typical nap schedule. Caring for Jack is a full time job. It is not something I take lightly. Everytime Jack goes anywhere whether it's a long trip out of town or just to the doctor, it is with great thought and planning. I never leave the house without an extra day's worth of formula and supplies packed in Jackson's backpack. I do that because thoughts like how would I feed him if we were caught out away from home and an earthquake happened (fill in your favorite diaster here) and I couldn't get home right away. When we leave I have to be prepared.

He had a mild case of bronchitis in July but with lots of vest treatments, inhalers, and antibiotics he recovered without a trip to the hospital. This summer Jackson enjoyed sleeping in and getting that extra time in Momma's bed that summer time brings. Sleeping and just resting in my bed is Jackson's favorite spot in the whole world! He can be very upset but when I put him in "his spot" and snuggle he calms down and gets very excited. This low cost treatment goes a long way!

School:
Elizabeth started 6th grade at Tipton Rosemark Academy. She is really enjoying her new school. She decided not to continue her dance this year with Millington School of Dance. :(  She decided to get involved in the activities for 6th graders at TRA. She is playing on the 5th/6th volleyball team, cheering for the 5th/6th grade football team, running for student council. I am so glad that she is trying new activities and making new friends.

Wesley started 4th grade this year at E.E.Jeter. He is playing competitive baseball for the West Tennessee Bears for fall ball. He has been playing in lots of different positions. He just likes to play! He has been taking private pitching lessons too. I am looking forward to watching him play in a game soon.

Jackson started Kindergarten this year. He is homebound which means his teacher comes to the house. It is the best thing we did for Jackson. He is more alert for his lessons and is sick less too. His immune system does not have the energy to fight the onslought of germs that going to school brings. The getting ready for school and travel to school also just wears him out. We worked last year teaching him to use a switch to turn pages in a book on a computer. He can use the switch! He liked clicking his switch!  We are excited to say that we have an apt. at the The TAD Center in Oxford, MS. to get a free evaluation for Augmentative, Alternative Communication (AAC). AAC is using technology (computers, switches, etc) to establish communication for people who can not speak. Think of Steven Hawking if you need an example. Jack is just beginning this journey. We are expecting great things from Jack and AAC. I am looking forward to working with him to find out his simple wants and needs. We will be working slowly but diligently with Jack. 

UMDF:
Mom, Jack and I went to Nashville this past weekend to the Nashville support group meeting. They were having a recap of the yearly symposium. I haven't been to see that sweet group of mito people in a long while. It was nice to get to visit with them. Dr. Tyler Reimshil spoke about the scientific/medical side of mito. Sonya Murray spoke about the nutrition and pain management segments that she attended as a parent. I enjoyed to recap and plan to sit down when I have time and listen to the symposium segments posted on their website.