My Blog List

Wednesday, November 14, 2012

Who needs a big cerebellum any way!

If there was an award for most valuable patient our family would certainly win. Three visits to AI in one week and one more to go. To say we are frequent flyers is an understatement. However, I would not give up our doctors or this hospital.

This week was a busy week neurology visits and genetics. My brain is in medical overload , but I can honestly say this okay. Tonight I left the hospital with a reason for Hayden's balance instability and coordination. Almost five years and a multitude of test to hear the words uttered to me. Your sons cerebellum did not develop correctly. His cerebellum is small and that will not change. I mean who needs a big cerebellum any way? What I am thankful for is this is not progressive. I am thankful Hayden is going to be just fine. Hayden will always be your best friend and he will make you laugh when you have sad days. Not sure the world is ready for this little man :)

We have also been blessed with our sweet Julia. The nasty HHV6 virus that caused roseola could have impacted Julia significantly. It has not and will not, which is a huge relief. It may take a year for her to fully recover but time has always been on our side. Julia is making great progress and continues to work hard at trying to walk while getting into trouble. She is fond of standing on chairs and climbing on things she should not.

Tonight I will keep it short and sweet. I am sure I will have more news in the coming weeks.

Thursday, November 1, 2012

Pure joy!

Wow, I can hardly believe it is November already! November and December are my favorite time of the year. I absolutely love the holidays and everything it represents. I know you are reading this for updates about my pride and joys and I promise I will be doing just that.

First, I will start with updates on my littlest love Julia. We are celebrating two months out of the hospital and being healthy. Huge huge win for our family. Julia has been making great progress in her recovery of post viral cerebellar ataxia. She recently started walking with a push toy for a total of five feet. Hooray! Julia is also clapping and banging toys at midline another hooray! She has become quite the daredevil sneaking up the stairs when we aren't looking, standing on chairs, surfing on her toddler rocker, and standing up everywhere. We also got her microarray results back, normal! Julia is still being followed closely by neurology and will see genetics soon. We just got back today from seeing Dr. Scavina and she is pleased with her progress but is still contemplating steroid therapy. I declined right now because we are heading into flu season and it worries me putting her immune system at risk. Right now we are in a good place with therapy and will add pool therapy soon. I know she is going to adore the pool.

Now onto my main man Hayden. I cannot believe he will be a big five year old next month. He is doing really well in school and loves his friends and teachers. Hayden recently went to the eye doctor and was able to read the entire picture chart. He didn't just read it he used descriptive words and size references. Hooray for preschool and all he has learned! Soon we will venture to his neurology follow up and orthopedics. This includes a new orthopedist who specialized in cerebral palsy. I am eager to meet Dr. Miller. I cannot wait to have someone assist me with helping Hayden become the best he can be. Hayden is also celebrating another important milestone we are finishing soccer! He is going to be so excited to get his soccer trophy on Saturday. Hooray for sports that include all abilities.

I have been seeing a ton of post on Facebook on starting to write down what they are thankful for each day. I think this is a wonderful idea. I am going to close my post today with my first thought for the month.

1. Today I am thankful for a simply perfect Halloween. Hayden and Julia loved every minute.