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Wednesday, June 13, 2018

Life has been non stop... SPML AGAIN and NAPA has begun

I always want to come here yet never have the time. I honestly do not get any time for myself. Having 5 kids and their sports and therapy all while running a business leave very little time for me.

Brendan joined Drama this year as well as basketball. Some days he had both! He was in a school play (very small part) but it was so great to see him part of something like that. He absolutely loved it. They did Little Shop of Horrors and it was an excellent play. His siblings wanted to watch it multiple times and then we had to rent the movie. Brendan's challenger basketball team won the state champs! They rode the bus back to school with a police escort. HOW COOL?!

Brendan has been growing like a weed. He hit 5' tall which means he is catching up to me! His knees became crouched so badly again that I knew he needed SPML, again. This was his 3rd round. Although his spasticity is gone he still has some tone issues and his tendons don't grow properly due to having spasticity for 12 years. As he grows his tendons can't keep up which makes them short compared to his bones and muscles. He needs them feathered so than can stretch out and allow his legs to stand straight and tall. He also has very weak glutes and quads from 12 years of his body not allowing him to use the correct muscles to stand and walk. This all prevents him from being able to stand straight. This causes him to become exhausted while walking. Fortunately we had signed up for NAPA last year which started this week. Dr. Nuzzo's staff squeezed him in weeks before so we could continue with therapy. Otherwise I would have had to cancel because therapy wouldn't have been very benficial with legs that couldn't stand properly. I am so glad it all worked out. There are amazing people in this world.

Sports are slowing down and soon we will be camping, finally! But first Brendan has 3 weeks of intensive therapy with NAPA. They recently opened a center in Waltham, MA. I signed him up a year ago and suddenly the time has come. We commute daily which takes about 4 hours total. He has 3 hours of therapy and is doing amazing! I wasn't sure how he would act. The only therapist that could get him to work was Mike Poole. Yet he is going and smiling and working and I am shocked! He has 2 hours of neuro suit and one hour of cage therapy. He has one hour with an OT with the neuro suit on and one with PT. He is 3 days in and has such a great attitude. I am so beyond proud of him. I think he is already getting tired so I am not how I will feel during week 3. I hope he can rest well on the weekend and plow through week 2 and 3. Luckily his dad has a hot tub and pool so he can relax and heat those muscles up.

My main goal is for him to gain some stamina in his walker. I hope I learn some new tricks on strength training. I already have seen a few more things I want to order for his home therapy room. It is a huge commitment and I love that our family makes it work. I am so happy we can commute and I can still be home for the morning routine and be home in time to help with dinner. His hours of therapy worked out perfectly and saved us some time sitting in traffic.

Wish us luck! 12 more days to go! Once he is done that will be 45 hours of therapy under his belt!


Sheila said...

Way to go, Brendan! Keep up the great work then enjoy the summer!

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