Walking and Walking and Walking!

So no update in April, here is why...

We are walking, walking, and even almost running everywhere!  So...needless to say we are even busier keeping up with Mark Henry!  It's amazingly wonderful to have a child who can walk and we are so thankful for his progress!
He has completely ditched the walker at home and not using the wheelchair for busing to school. We are still sending the walker to school until he is a little more confident in that environment. The school is concerned from a safety standpoint and fatigue that sometimes he needs the walker, which we are ok with for now.
So he is learning to get on the bus via the steps and is buckled into a regular seat!
We are also teaching him to climb into the car with assistance and get into his car seat.
He is so happy and loving his new independence.

Obviously, he has gained core strength and the recommended additional PT both in the pool and clinic is paying off. We will be back at Mayo early June hopefully for an official go ahead with the surgery, selective dorsal rhizotomy this summer. The rehab is intensive PT so we hope to get it scheduled in July and get him thru the intensive couple of month of PT ready to get back to school on time in September.  The full recovery will be 1 year and significant time in PT working hard but we know he can do it! and will be better off for it. The fact he is walking independently prior will help ensure a good outcome for more normalized walking later on and less chance for future orthopedic surgeries.

Meantime he is making other gains in speech, consistently says dada, dada, daddie. We are diligently working on Mama and Mommie, but he loves to say Dada! He is answering questions and choices purposefully with "Yes."  His voice was heard at school recently with "green" and "story," which is a big breakthru since he has been talking at home and therapy but had not yet at school.  He is still using his ipad and works well with it at home and therapy, we are still working with it at school, which is more challenging given distractions and various providers working with him.
Yesterday we had his iep planning meeting, to set new goals for next school year and talk about his progress. He has made huge gains this year and we are planning for more in the fall. Given his late December bday, he won't be 5 at the cut off date for Kindergarten here which is September. He will go next year but this gives him the benefit of an extra year of preschool and time to get ready for big school next year. He will continue in the same preschool, which he loves. He will continue attending an inclusive program 3 mornings a week. He will be in a new class, new teacher but will have some friends and hopefully his para assistant will go with him.

Summer is finally on the horizon, we had no spring, a April and May winter storm...seemed like winter and snow would never end. But we are in the 70s and its sunny hooray!  So with that we are starting horse therapy again this year, same place hopefully same horse, Freckles or maybe someone new. He will ride May and June for an hour each week, for 7 weeks.  He also starts t-ball again next week and has games on the weekends for the same 7 or so weeks.  We will be happy to be outside and see how well he does on the horse and the ball field, especially with the progress he has made, its going to be fun to see him walking and talking at these activities.  More to come on this, will post some photos in a week or so!

Hope everyone is having a good spring and enjoys the summer and some time to relax and be with family and friends.
We will likely have a late summer vacation.