Saturday, January 6, 2018

Happy New Year! Welcome 2018

It is hard to belive it is already 2018! This year flew by. Our children had a wonderful Christmas. This year was a bit different because both my Mom and my In Laws went off for the Winter. My mom is in AZ and my inlaws are in FL. They chose a great year to escape New England as we are stuck in single digits a bit too much for my liking. Our youngest already turned 3 just a few days ago, Now that is it crazy.

It was a pretty easy year. Our business is going well and the kids are all healthy and happy. Actually the 3 year old is down and out with a fever right now. Hoping she feels good tomorrow, it will be day 3. Four kids are now in school which makes life a bit easier. Lily is getting older and easier to take care of especially while at work. I hope 2018 is just as good to us.

Brendan didn't need any surgeries and has had good behavior especially for being 15. We continue to work out multiple times every single week. This is very important after SDR. February marks 3 years since he had SDR (Selective Dorsal Rhizotomy) which also amazes me. Time sure flies by as you age. He has been growing constantly and it is causing a lot of issues with his body. We work hard to overcome the challenges but somehow CP always seems to win! We have been watching his hips often but his left hip is staying at around 40% out. I have 4 orthopedics who tell me we should perform surgery and one out of state ortho that says not to. I am extremely torn. It is one surgery I do not want to repeat. I have been told oposite opinions about how he will be after the surgery. One doctor told me he will never walk well again, not even how he is walking now. I have had another doctor tell me he will get back to where he is and hopefully surpass this level. Then I have the out of state doctor tell me what I want to hear and that is many people live with a hip that is 40% out just fine and never need surgery. I just read about an adult wishing she had the surgery when she was younger because her hip is causing pain and a poor gait. His hip never leaves my mind and I hope I am making the right decision but sometimes when I see him walk or stand I wonder if he should have the surgery. I wish I could forsee the future and then make the right decision. Wouldn't that be lovely?

Brendan is still improving on his speech. He keeps coming up with these sentances that make me laugh only because I don't expect to hear them out of his mouth. Sometimes his 10 year old sister and I repeat what he says at the same exact time. We both can't believe what he says which I find adorable. I love when she is shocked at what he says just as I am. I wish I could remember some phrases from the last week but my brain isn't working as well these days. I never ever expected him to speak as he does today and I am thrilled that the brain constantly heals and improves.

Brendan received a Keurig for his birthday and is obsessed with it. He has either coffee or hot chocolate every day. He can make it all on his own but I have to help him add ice, cream and sugar. How can I say no when he yells "I made it all on my own mom"?

He started to be able to stand up on his own lifting himself off of a kaye bench. We work on this nearly every single day. He has major balance issues. Honestly I am not sure if he has any balance at all. It is the one thing I wish would come to him but it just is not. We have been using estim on his quads because his brain wasn't activating that muscle at all and it is working! He is now activating them after a few months. His glutes don't activate either but somehow I think that may be mean to estim his glutes!!

We have a 3 week intensive therapy coming up. NAPA is opening up a location near us so we can commute every day. I figured it was worth a shot and I don't need to disrupt this family too much since we can commute every day. I am worried about his crouching and feel he needs SPML yet again. I really hope it doesn't effect his efforts or progression during the NAPA intensive. I will be diligent with stretching and working out for the next few months. He will attend at the end of June a few weeks after they open their new location. SO EXCITING!

Another exciting month will be April. My in law are bringing everyone down along with my sister in law, her boyfriend and their daughter during the whole week of April vacation. We have never done anything on a school vacation so it is a little exciting. Some of the kids have never flown so they are nervous for their first flight. The girls are getting older and can potentially fly down on their own in the future during school vacations so I am glad we get to all go together for their first flight. Brendan and I can certainly show them the ropes!

I still have my 'I hate CP days' lately but I continue to just take it day by day. I get too stressed out if I live life any other way. We will continue to work hard and appreciate any progression that Brendan has and just enjoy our lives.

Here's to 2018!!!

Brendan is really growing up on me!

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