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Thursday, September 6, 2012

Updates Updates Updates

Wow, what a week it has been after a nice long weekend. My life is chaotic to say the least with no end in site for a few weeks. I had a wonderful weekend respite day for myself. I was able to enjoy a day of zip lining and venturing around Washington, DC. Thanks to my hubby for watching the kiddos while I enjoyed a wonderful stress free day of fun. Now, back to reality! The work week started on Tuesday it is nice to be back into a somewhat normal life. Then Wednesday approached and I knew this marked the start of the busy week I have ahead.

Wednesday, was a big day for us it was Julia's first neurology appointment with Dr. Scavina who happens to be big brother Hayden's doctor. Wednesday also marked the day we were going to get Hayden's vestibular testing results.  Well, we ventured to our neurology appointment at AI, little did I know there was going to be a radio-a-thon at the hospital to raise much needed money for the children's hospital. To say it was a madhouse was an understatement, thank goodness for free valet parking! I am beginning to think it is bad that the hospital staff is starting to recognize me. I guess that is what happens when you have been seeing people for four years, they become an extended part of your family. They were surprised to see me there with little Julia. They remember when I was pregnant and how proud Hayden was to become a big brother. Dr. Scavina came in and said your children must think you can handle the world, I said sometimes it is a true test of my strength. Some days I feel successful other days I feel overwhelmed. She discussed with me the recovery time for post viral ataxia and tried to do her very best to reassure me Julia's case is much different than Hayden's.  She also confirmed that Julia does not have hypotonia other than what is caused from the onset of the viral ataxia. However, she did mention Julia is hyper reflexive just like her big brother and mama. Guess being double jointed and flexible comes in handy at times :) We were also fortunate to see the neurologist who treated Julia while she was in the hospital. We really liked her but decided to see Dr. Scavina because she knows our family.  She was very excited to see Julia's progress. After a consult with both neurologist it was determined that Julia should have a baseline EEG completed. Once our neurology appointment was finished Julia and I ventured to the hospital cafe for lunch before our pt session.

Next on the agenda was physical therapy. Julia has been seeing her big brother Hayden's therapist Wendy. Julia loves Wendy and plays extremely well and cooperates for the most part. She is still determined to get what she wants and successfully motor plans how she is going to get it. While Julia was in her pt session I had the opportunity to talk with Faith, one of the pt's who is apart of the vestibular team.  The conclusion of this testing showed Hayden does have a challenge with vestibular ocular reflex.  What this means I am not sure, we will need to see a specialist that can help us figure out vision strategies for Hayden. The team also confirmed Hayden's CP.  This has been brought up before but the doctors were hesitant on providing that diagnosis. After all he has been through I hope everyone can agree this is the final diagnosis. I truly am finished searching for the why's behind Hayden's delays. I just want to focus on the right now. How to help Hayden live an independent life and strategies for him to meet his full potential. I have come to realize Hayden is leading us on his path and only Hayden will show us what he is fully capable of doing. I believe in my heart of hearts this kid is going to do amazing things.  So, our next steps with Hayden are to visit a new opthamologist who specializes in this vision disorder and a cerebral palsy orthopedist.

Today I returned to AI, I feel as though I live there lately. Julia had physical therapy and her EEG today. She did so well in physical therapy. My little lady was cruising! What a relief we are getting all of our skills back. She even decided she wanted to walk with a push toy. She did pretty well and only lost her balance a few times. I think with continued therapy this little girl is going to recover. She has proven she wants to do this and is determined. We had lunch again in the cafe at AI before our EEG. Once again it was a mad house with no where to sit. I am looking around for a seat and some great staff from the cardiology department decided to share the table with Julia and I. She of course won the cardiologist and nurses over with her big smile. I think they could have stayed for hours playing with my sweet girl. After lunch we ventured to have our EEG which was back up in neurology. Of course since I am a frequent flyer of the neurology division the staff asked why I was back again. With a smile I said EEG today. We were taken back fairly quickly however Julia was not digging the electrodes on her head nor the flashing lights. She was extremely exhausted and just wanted to sleep. It broke my heart to see her so sad. Luckily that part last 5-10 minutes until I was able to hold her and she fell asleep laying on me. We got to rest for an hour until the procedure was complete. Finally we went to visit our friend Connor and his mommy while they were staying overnight at AI. I remember all to well how lonely the hospital will be.

Now, we are finally home ready to venture to AI again tomorrow for OT. Boy these kids keep their mama and daddy busy.

Until next time....

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