February is rare disease month and although dystonia and 22Q are not diseases they are both rare “disorders”. So I figured now would be a good time to update you all on me & Cody (and the rest of my family)!
This morning, as I made my way to target, I could feel my head pulling to the left. This hasn’t happened for a long time but as the pain started I knew exactly what was happening. By the time I got to target, my neck was in a complete spasm and I was unable to straighten my head. I sat in the parking lot for about 20 minutes as I waited for it to pass. It brought me back to before I had kids when the same thing happened in a Marshall’s parking lot and I had to call my mom to come help me.
The last year has been pretty tough with my dystonia. My DBS doesn’t really work anymore so I take frequent trips to Albany to get Botox in my hand, foot and neck. It hasn’t been helping with my foot but it definitely relaxes my hand. Unfortunately it also makes my arm extremely weak and painful and I can’t really use it at all.
Last weekend, while packing up leftovers at a restaurant I spilled an entire bowl of pasta on Hailey’s legs because I couldn’t hold the to go container with my left hand. I find myself getting emotional when these things happen, mostly out of frustration.
I don’t really know what my next steps are, my surgeon moved to Florida so I’m currently waiting for a new one to take her place. Honestly though, I don’t know that there’s anything that can be done. I don’t think I’d do the surgery again, especially after last time. So I’m just trying to make the best of it and hope things don’t get much worse.
Other than the Dystonia, life has been hectic but good. Hailey & Cody are both playing basketball so Jim and I spend most weekends watching their games. They have both improved so much and Hailey got picked to be on the all star team this year! We can’t wait to watch her tournaments. They are both doing excellent in school and this week we will be celebrating Cody turning TEN! I don’t know how that happened!
He has had a tough year with illnesses but he’s still his happy self most days. He was diagnosed with recurrent juvenile parotitis so his face swells a lot. This sometimes is accompanied by a fever or vomiting. We will be getting a second opinion at children’s hospital in April. He also has had quite a few illnesses and has missed too much school this year. He had an immune work up and his immune system is weak, similar to when he was a baby. They have recommended a vaccine to help with this so he should be getting that soon. He will be going in for surgery in the next month or so to have some work done on his teeth. Because of his 22Q, his enamel is weak and he grinds his teeth so he has a lot of damage. We are hoping his adult teeth are much stronger. On days when Cody is not sick, he is the happiest kid you’ll ever meet and I can’t wait to see what great things he does this year!
Hailey is growing up too fast and has her first boyfriend this year. She is 12 going on 25 and as sad as it is that she’s growing up so fast, she is so fun to be around and talk to. She is the kindest, sweetest girl (except when she’s on the basketball court haha). I love to watch her do the things she loves.
Jim is doing well and as always is there for me every single day. He is doing great in his job and has big plans for this year. I can’t thank him enough for coming into my life and changing it for the better. This is the first time in many years I feel like I can be myself and be confident in the things I do. He pushes me to succeed and is helping me reach many goals.
We have started to plan the dystance 4 Dystonia event and it will take play on May 21st at mine falls park in Nashua. Unfortunately, this year it will not be a timed 5K. If you would like to sign up please click the link below and if you are interested in becoming a sponsor or donating to the raffle table, please let Jim or I know. Thank you for your support and we hope to see you there!
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