Spring 2014

It’s been a while since my last post and I have had a few “How’s Mark Henry? What’s new with Mark Henry?” No news is good news… Just been busy you know working full time, finishing my MBA, managing therapy and school schedules and meetings, planning for kindergarten this fall, dealing with medical claims and insurance, dealing with a renovation at the house and oh-growing his baby sister who is due to arrive in 5 weeks or less! Mark Henry continues to amaze everyone with his progress. Physically he is a different child since the surgery and continues to gain strength, balance and mobility. Just this week he started doing the stairs at home himself. He has been doing them for awhile but with us standing by for assistance. Now he just decides he wants to go up or downstairs and does it! It’s great to see him gain even more independence. After the surgery he had months of intensive physical therapy and was going 5 days a week to Courage Center he dropped back gradually to 4,3 and now just 2 days a week. His PT Megan is very happy with his progress and feels that at this pace by fall he won’t even need his crutches at school! We checked in at Mayo earlier in the year and again his team was very excited about his recovery and progress since the surgery last July. His prognosis is good in terms of avoiding future surgeries for orthopedic issues which was one of the many reasons we did the surgery. There is still a lot they don’t know about kids with CP and it continues to be a debate on the kids that qualify and are “the best candidates” for the surgery he had. Many have good outcomes, some excellent and others perhaps were not the best candidates. They held us off for a period of time until they thought Mark was strong enough to endure the PT schedule following the surgery and even then one of the team was hesitant about his outcome, there is no crystal ball. We did our homework and with what we had to go on as well as knowing Mark Henry’s determination for independence coupled with the Mayo team’s assurance it would only help Mark Henry we took a leap of faith and are glad we did! He is part of a research study to measure kids pre and post surgery to track progress and success, hopefully this will help them better understand the best candidates and help future families have more information to make decisions on whether to do the procedure.We have our one year check up in August and I am sure he will make even more progress by then! Mark Henry has had a great second year at preschool, he is in an inclusive class with typical peers and thrives in this environment. He has multiple special education teachers and therapists that work with him on fine motor, gross motor, speech and language and communication with his ipad. It’s been a great team effort and we are all thrilled with his progress. Sadly many of them will not work with him next year as he will be in full day, 5 days a week Kindergarten! Wow time flies, where did my baby go? We have been busy with planning for this transition to a new larger school and many meetings with the current and new team to get things in place for Mark Henry. I am pleased with the plan we have. I hope the transition will be smooth. I am sure it will take some time for him to adjust to a new environment and team and for them to get to know him. His school is very close to the house and we drive by it often he has now visited and knows it’s his new school, so when we drive by he points out the window and we talk about him going there in the fall. Summer is going to be busy. I am looking forward to warm weather and being on leave from work mid June- mid Sept. Mark Henry will continue therapy 2 days a week at courage center working on PT, OT and Speech. We have also signed him up for the summer session of hippotherapy, at the horse ranch. He has been riding the past 2 years and loved it. It’s also great for his core strength and balance. We have a new PCA starting with us in June she is a paraprofessional at the local middle school and has experience with kids with CP. We are happy to have someone full time who seems dedicated and committed. This is a big relief since we will have our hands full taking care of a new baby as well as Mark Henry. He does seem to understand a new baby is coming, we are reading all the books and talk about it daily. I ask ”where is your baby sister” and he lifts up my shirt and hugs my belly, so cute- must video that! Since I will be home all summer we are hoping Dad (Mark) will be able to work part time somewhere local, as well as send some more time with Lucy our black lab that we are training to be Mark Henry’s service/ companion dog. Over the winter she completed several puppy and obedience classes but she’s not yet a year old, already 50lbs and still needs some training. She is amazing with Mark Henry and they definately have a bond. While our house was having some renovations we were at a hotel and she stayed over and insisted on sleeping at the end of his bed and alerted us in the morning when he got up! Most days at home now she will bark to let us know he is up. She is not yet sleeping in his room but that is a goal for the future, when she is fully trained. Hope everyone is having a good spring and sorry for the delayed update. I will also post a brief recent video of MH at Courage Center outside walking so you can see how well he is doing!