She did a great job of 1. remembering to patch and 2. getting him to keep it on for at least 4 hours a day. She distracted him when she put it on to avoid too many tears and kept him occupied the afternoons he needed to wear it. As soon as she left for the day, and Mark or I would be around he would immediately take it off!Her persistence paid off, his eye check went great and he is now again using both eyes together better, so we are done with the patch for now. Recheck in a few months!
We are not going back to Mayo until February! I think thats the longest stretch ever without an appt! Mark Henry will have a gait lab to assess his mobility and readiness for the rhizotomy surgery next spring. We will also meet with his physiatict doctor to follow up and talk about the surgery. He has been doing extremely well walking with his walker and taking more and more independent steps.
We also started pool therapy this month, a change from PT at the clinic on land, he will now work in the pool for an hour once a week. He loves his new therapist and she has experience with kids post rhizotomy. This is great news since we need a PT he likes and trusts as the rehab will be long after the surgery and we need someone patient, and experienced.
We had a hectic Thanksgiving weekend, Mark Henry was sick and we ended up at the ER Sunday night, as he refused to drink for 24 hours and had a high fever. We ended up getting an IV and some other tests and they kept him overnight as he was dehydrated. He went in so sick and the next morning he was a different kid. I don't know what magic is in those water/ sugar IV bags but he always seems to bounce right back after one. I just wish we didn't have to take a trip to the ER to get one! Fortunately he didn't have pneumonia or the flu just a bad cold virus and once we got home he was drinking and eating again.
We have started potty training and he is doing well with the pull ups and as long as we remember to take him frequently he is good and going on the big potty. He also loves the reward of flushing and
washing hands! Yes, we did a sticker chart and potty books, but he's just not that in to them... but if we say go and you can flush and wash your hands and he does! Once we get a bit more consistent we will try to do potty at school as well, for now we are still in diapers out of the house and at bedtime but at home he is doing great with the potty...it's a good start.
Communication is coming along too we still use the PECS cards and he now has an entire binder full of pictures he uses to make choices and tell us what he wants. We are also working with the ipad and he is getting very get at using the ipad so we are working with the school to get him his own ipad with the pro lo quo communication application. For now he uses fun apps like Mickey Mouse and a few educational ones with colors and music and animals. We also are using a simple yes/no app. but the pro lo quo will hopefully replace the need to carry around a bulky binder of pictures and will enable sound. So when he presses the picture on the ipad it will talk for him! He is making more sounds and starting to put some sounds together. He understands so much and really is coming along with speech. In the bath tub he has learned to say on, when he want s the water on to play. We are trying hard to "withhold" the items or things he is requesting for him to try to sound the word...instead of giving in to the pointing and grunting. He is capable at making the first sound of many word, p, b, c, r, s, a, m, o. this is amazing progress.
Mark Henry will be 4, December 28... we are excited to be able to invite a few friends from his preschool over for a playdate and cupcakes!
It sounds like Mark Henry is making amazing progress...fueled by his wonderful parents and support team. Miss you very much and hope that your holidays are filled with love, light and laughter.
ReplyDeleteLove the posts....keep 'em coming!