Pageviews past week

Tuesday, May 29, 2012

ahhh...summa time!

We have had sooo very much going on at the Culley house lately. Elizabeth graduated from 5th grade, Wesley turned 9 and Mom retired from 29 1/2 years of teaching.
Jack, overall for a 5 year old with Leigh's, is doing well. It has been a year since our last hospital stay. I am super excited about this accomplishment. It has been with great sacrifice and my sanity but I have kept Jack home alot this past fall, winter and spring. This past fall, winter, spring was the healthiest ever for Jack. He was on antibiotics a few times and for a awhile but he did not have to go to the hospital. Jack is continuing to grow and change so very much. He weighs 47.6lbs. and is 43 1/2 in. long. He wears a size 6 and likes to wear some of Wesley's size 7 handme downs. At our last Dr. Morgan visit we had to increase some of his seizure meds because of his growth. We were seeing an increase in the strength, frequency and duration his myoclonic jerks. It's a balancing act. We went to see Dr. Joshi. He is our Memphis cardiologist. Jack had not seen him since he was about 15months old. I needed him to be updated on Jack's cardio status and get on Jack's team. He is willing to work with Dr. Moulik in Houston and was confused as to why I went to Houston to seek care especially since Dr. Wheless was in Memphis.  I told him I thought Dr. Wheless was a very smart man and good doctor but he does not work well with others. Jack's mito care takes a village and I am the mayor. I can't have any one in the village not willing to play nice with others. I also told him Dr. Koenig sees Leigh's patients every week/month in clinic. Some Memphis doctors see maybe 1 or 2 their entire career. I told him I want Jack to receive the most up to date mito care as possible and (for Jack) that was in Houston not Memphis. Dr. K's office actively helps recruit patients for research and she is also involved with the UMDF. He understood and didn't ask any more questions. I wonder why...

Elizabeth is exicited and nervous to be starting middle school. She is zoned to go to Woodstock middle.We do not think it would be an appropriate learning environment for Elizabeth. We asked for a transfer to Arlington Middle. We did not get our transfer to Arlington Middle. It is one of the top middle schools in the County system. I was very angry and disappointed. John and I are considering all our options for August. We will have to make decisions soon about what to do about middle school for Elizabeth. Homeschool advice anyone?

Mom retired this year from teaching. We are super excited about this news!!!! People have asked me "What will your mother do with all her time now?" I reply "Whatever she wants!"  She is planning on being with Elizabeth, Wyatt, Wesley, Ava, Jackson, Mason, Harrison and Charlotte as much as they can stand.  Congrats Mom!