A Michigan Family's Story - How MDA Helps
Andrew is moving (scootching) everywhere! He is balancing more on his arms, very daring with his reaching (sometimes causing a face plant into the carpet), has learned to scootch backward, and is even trying to get up on one leg (he wants to go/walk extremely bad).
Andrew is starting to ask a lot of questions about why he can't walk and his friends/family can. He is pretty content when I tell him his muscles are a little weaker and that he has muscular dystrophy. When I ask him "What am I going to do when you get bigger?" he tells me "You're going to let me walk". He says he will walk when he gets big like us. We just nod because we really don't know for sure what future research will reveal.
As most of you know, we have moved to a new home that is updated for Andrew. We love it!! He has so much freedom and can even use his manual chair everywhere in the house. He is a little spoiled right now with his bedroom and also a playroom. We keep the more accessible toys/tables in his bedroom (Eric built a table at his wheelchair height), and try to keep it more open for him. The playroom is carpeted so Andrew can scootch all over and play on the floor. We are so thankful for our builder who was been just absolutely wonderful to us and put a lot of extra effort and thought into building an accessible home for Andrew.
We are truly blessed to have such wonderful neighbors in our new subdivision. There are two girls and two boys the same age as Andrew and one boy that is a year younger, all of whom live within two houses from us in all directions. Plus many other ages (older and younger). They are all so wonderful, we just can't say enough about the kids and their parents. Four of them will be in the same grade! We now feel even more confident with our decision to build in a sub!
Andrew has started preschool and seems to enjoy it most of the time. He gets some PT and OT there during class times, has met some new friends, and has a wonderful teacher.
Andrew has been enjoyed several trips to the fire stations in Detroit, Trenton, and Brownstown. This year was the first year he helped the Trenton firefighters wash cars to raise money for MDA and later in the year they gave him two rides in the fire truck around Elizabeth park. What a wonderful group of people!! He also celebrated his 3rd B-day at the Brownstown fire headquarters and had a blast!! They have been very good to Andrew! We hope to start our own fundraiser for MDA/Merosin Deficient Research in the near future.
Andrew is becoming very independent and is stubborn as ever, I don't know who he gets it from (J). He seems to be learning a lot and is very lucky to have such wonderful friends, neighbors, cousins, grandparents, and other family members who love and care so much for him.
Andrew continues physical therapy at school and home and will be walking with what is called a "Lite gait trainer" at Uof M physical therapy from Jan to March. We wish he would have this opportunity throughout the year, but we have to work around the insurance companies and U of M. He does periodically use a walker at home, but it is very difficult. He also uses a tricycle for therapy/recreation as well and does a great job. This is something we never thought he would be able to do on his own.
Andrew has had a power wheelchair since last August and he is a pro! He is still able to use his manual chair, which is great for his arm strength and posture, so he uses these in the house and most of the time and at school. His power chair gives him a lot of opportunities outdoors and we take it with us everywhere!! I don't know what we ever did without one! Thanks to our builder and family we were able to install a lift in the back of our van to get the power chair in and out (it is over 200 lbs!!)
After a year and a half of waiting, he will finally be receiving a Standing Dani for Andrew (this Tuesday)!! This is a motorized stander that he will be able to use outdoors and in the house. It will also give him the opportunity to stand with his friends, play some sports (baseball, golf) on top of all the wonderful medical advantages to standing. For more information go to www.standingdani.com. They have pictures, and video (he is getting small wheels). It also goes a little faster than his power chair (OH NO J!!) about 6+ mph! I can run with him now!
We are faced with many minor contractures (tight muscles/joints) of the knees, hips, and right elbow, and one major contracture of the right shoulder, but Andrew is responding well to therapy and we try to keep his strength and range of motion by regular home therapy. He is doing so well!!! We never knew he would be as strong as he his!
Andrew has been pretty healthy since our big scare with bronchitis last spring. He has a brief cold here and there, but now that we have new allergy medicine and do breathing treatments, he is recovering very quickly, sometimes only one to two days!! Of course, we are cautious as always and trying to keep ourselves healthy as well.
Best for last!!
As most of you know, Andrew had an adductor muscle (hip) release surgery about a year and a half ago. We made this decision based on a hip dislocation, abnormal positioning of the hips, shortening of one leg, minor scoliosis (17 degree curvature), and neck curvature. After 6 mos. Andrew's hip was moving back into place, he could sit up straight and started scooting, his neck improved, and back curvature went to 7-8 percent.
Wednesday we got a new spinal x-ray (it's been one year) and Andrew's back is straight!!! No curvature!! His neck is fine and hips look straight! We are so excited for him!!! Thank you so much for your continued prayers and support!! We are all so blessed!
I will try to keep you all updated in the future and again appreciate all the love and support you have all given us over the years.
OF COURSE, I have attached some recent pictures of Andrew!
The Calvins (Laura, Eric, and Andrew)