Minnesota and our plan

This morning I sit at the computer with my cup of coffee at HOME. Nothing better than having a REAL cup of coffee and feeling the cool breeze blow through the front window. In case no one knew this about me....I HATE hotels! I would rather camp out doors than stay in a hotel. Funny, HUH?
Tuesday evening Isaiah and I made the trek over to the Mall of America. I can honestly say the only reason we go there is for the Lego Store. Isaiah had saved $117 and was very anxious to spend it on a new set. We were greeted by a creepy sales guy whose goal was clearly to become Isaiah's new BFF HA! obviously he had no clue of Isaiah's ability to make people disappear, which he promptly did, forcing me to be friends with creepy sales dude.
After making his purchase we met up with Brad and his son John. Brad is an old family friend whom sadly I lost track of many years ago. I was reminded as we sat and chatted over dinner then meandered through the mall how very special he is and how important he was in my life. I am sad we lost so many years but so grateful for the opportunity start a new. Brad has done a fabulous job with John, being a single parent is not an easy job and he has done it well! I had forgotten how much laughter comes with spending time with Brad. It was a great night!
Wednesday morning came and with it came the sun! Another beautiful day! After 4, FOUR, detours we finally arrived at the Shriners Hospital around 850 in the morning. Checked in and went straight in for testing. We met with the orthopedic surgeon at around 10. We talked about the the future and what it will look like for Isaiah. I learned something I never knew about my son and in the process won mother of the year, yet again! (insert sarcasm here!) Due to the Klippel-Feil and the deformities of his spine Isaiah has always had poor range of motion in his spine and neck. He has always had pain, numbness and tingling. Those are just facts of life Isaiah lives with and he has done a great job learning how to manage without the use of pain meds. One of the interesting things about Isaiah is that instead of turning his head to see what is happening around him he uses his eyes. This I knew, what I did not know is that his range of motion is slightly better than what he presents, he just doesn't use it. Why? Because when he turns his head it changes his vestibular senses causing him to become dizzy, lose his balance and feel sick to his stomach. So he has trained himself to rely on his eye movement while moving about.
We discussed possible plans. 1. Have Isaiah wear a full torso brace for 6 months and follow that with surgery in November to fuse his spine skull to tailbone. 2. Try physical therapy 2-3 time a week for six months, see if that makes a positive difference, if it does then continue PT. If it doesn't then wear the brace for 6 months and follow it with surgery in May 2011. Considering his condition either plan would be reasonable. I decided on PT. We are excited to be able to work with Steve again! He was wonderful with Isaiah following his last surgery. There are some other recommendations I will be investigating. Doc said golf will really help with range of motion so I need to call around and see if there is any way to get a discount, he also suggested bowling. Sounds funny to me but if it works I will do my best to set it up. Doc's number 1 recommendation was to start Tai Chi (spelling??) He said that would be the very best for Isaiah. It has many many benefits and is no contact form of martial arts so we would not have to worry about injury. So please, if anyone locally knows of where we can find a Tai Chi class let me know!!
Isaiah and I talked a little about the plan and what his future may look like. It is never going to be predictable or easy but we have a good plan and the best doctors in the world. So we are comfortable with the decision we made!
The trip home was long. I have never experienced being sleepy while driving. Until yesterday, I actually had to stop 4 different times so I could get out and walk around to wake up. It was a horrible feeling to know my eyes could easily close at any moment and we would be off the road. We arrived home around 430. I unpacked did a few things then changed clothes and was off to a CASA Banquet. It was a nice evening but I was exhausted! I met some people who are now excited about Dropz of Hope and would like to help out in some way. Exciting things are happening with Dropz!
Have a wonderful day everyone! I will update on the Madison situation later!
Love you all~Ang