Fall, School and other updates

It's almost fall, the temps here are cool in the morning and at night and the leaves are changing. Its a relief from the hot summer, but also a glimpse of what's to come with Winter not so far away. Mark Henry started a new school last week. Since we moved we are in a new district and he will attend a program at the local education center called partners preschool. It's an inclusive program and we are so excited about it.

He has a wonderful special education teacher, Tim who works in a team with Melissa the regular pre school teacher. He also has a 1 to 1 aide to assist him throughout the day. Class in M,W,F mornings 9:30-12. There are many typical peers in his class and a few other kids on IEPs. He will also receive speech, occupational therapy, physical therapy, communication adaptation and adapted PE! They do their best to provide this within the class either 1 to 1 or in a small group. They will only pull him out as needed if they find he is too distracted to work on things. The day is very structured which will be great for MH. They have some free play but scheduled time for music, snack, motor room, lesson of the day etc. He takes the bus to and from school, they pick up right at the end of our driveway, he is transported in his chair but once at school will mainly use his walker in the classroom. They are also looking at different seating for him at group and activity time, to ensure he has the "least restrictive" adaptions, giving him maximum access to his peers but what he needs to succeed.

We had an IEP meeting before the start of school and all his teachers and providers were able to meet Mark, ask me questions and we reviewed his goals for the year. I think he has a great team and we are excited to see how far he can progress this year. I believe he will learn so much by being integrated and able to observe typical peers. I was told there is a little girl in his class who also has CP, so it will be interesting to meet her and her family hopefully. His Speech teacher at school shared she has an adult son with CP, so I am looking forward to getting to know her as well. His para brought to the meeting Picture exchange cards that she was working on to communicate the schedule of the day and for him to communicate and request things, they were neatly held in a black sleeve that can be used to show the schedule on the front. I had told them he has a whole binder of these cards we use at home but they were ahead of me in getting a school version ready. He will also be working with ipad at school, he has recently made nice progress with the one finger isolation and hope he can learn to use an app on the ipad to communicate and we can ditch carrying a binder with velcroed pictures we are constantly updating or losing!

Here are some pics from the first day of getting on the bus... can you tell he was excited!

Last week we also had a long day at Mayo for follow ups with many of his specialists. We were up at 5am and on the road by 5:30 for a 7:30 EEG. Mark hates the EEGs as he has had too many and therefore hates hats and anyone touching his head. We have been working on this sensory issue at therapy using massage on his head and face. He has been better lately letting me wash or brush his hair. The EEG went as we expected many tears to get it set up, but for a short EEG Mayo does use the little cap as opposed to gluing the electrodes individually to the scalp. However the prep for the hat still involves some head rubbing and prepping of the skin with a salt solution. I brought his ipad and tried as best I could to distract him with his fav Mickey Mouse app, while Daddy held his hands so the lady could go as fast as possible. Once the cap was on and he was settled on my lap he was ok. He kept a close eye on the tech lady and didn't want her coming close. We hoped since he had an early start and fought the prep he would be tired and would fall asleep in the dimly lit room so they could get some sleep readings. No such luck he rested but was not taking one eye of the lady that had just messed with his head! It didn't matter and she assured us she had the results she needed for the doctors to review. So about 9:30 we were out of there and looking for some breakfast before our next appointment.

We then met with Mark Henry's Neuro Opthamologist for a check of his eyes. They had been turning in again and we have been patching his stronger eye for the past 8 weeks. When I say we I really mean Shannon his PCA, who he will keep the patch on for 3-4 hours in the afternoons. When I try he just takes it off. I wasn't sure if we had gotten enough patching time in to make a difference and was thinking the dr. was going to tell us we need to use the dreaded eye drops...but I was wrong. The dr. saw improvement but we are not there yet, so another 8 weeks of patching and we will check back with him.

We had a quick lunch and then off to our next appt with genetics. We had not seen this dr. in over a year and a half. He wanted to check in and let us know about the advances in genetic testing, that there is now a test to look at the genes associated with seizures. After much discussion we decided to do nothing. All the drs. agree that most likely his seizures are associated with his PVL and CP and not the slight abnormality at Chromosome 22 that was found when we went looking...as Mark (Dad) has this same microduplication at Chromosome 22. If his seizures were uncontrolled or worsening it might be something to look at but at this point the genetics thing is a bit of a "red herring" as he put it. He also shared that genetics testing is getting more sophisticated, quicker and cheaper but the interpretation for results challenging as not a large population is participating in these tests. There is now a full genome map one can do of all the genes and discover all sorts of things about the short and long term health, but a bit of an ethics question on how much is too much information and is it beneficial? Interesting dr. and discussion.

We then went to see Mark Henry's neurologist who we adore. She was thrilled with the reports on how well MH is doing. She shared that the EEG although not "normal" was not worse or different and previous and findings consistent with the PVL and CP diagnosis he has. She also agreed that given his seizures have been so well controlled for such a long period of time it is time to try to reduce him from 2 medications to one. There is no way to know if he will/ had outgrown the seizures without trying this. She believe he may still need at least one medication to prevent future break though seizures but we can try to get him down to one medication which may also assist with his development and progress. So we have started to wean him of one medication, its a slow, 10 week reduction schedule. A bit nervous about doing this and we will be sure to have his emergency meds on hand and school and home but hopefully he will do just fine. She will see him in a year unless we need her sooner! This is the longest we have gone between appts!

Last of the day was Mark's Physiatricts, who is great. She was pleased to see he is still making great progress. We talked a lot about him wanting to walk and starting to take more independent steps and his cognitive development and receptive language. She is once again ready to recommend him for a Gait Lab assessment in January 2013 and feels he is a good candidate for the Selective Dorsal Rhizotomy surgery next year. Earlier this year would have been too soon. But he has increased his core strength and made great gains in so many areas she thinks the team will recommend him. This is great news as its his best chance a long term walking, independence and avoiding future orthopedic issues. All in all it was a long, but very good day at Mayo.

We finished our appts by 4:30 and then headed to an Italian restaurant we like and sat outside to share some pizza. We ordered Mark Henry his favorite, Spaghetti, which he gobbled up. I made the mistake of ordering him apple juice and instead of transferring it to his cup, let him drink it from the Styrofoam one that had a lid and straw. He proceeded to squeeze it and managed to put a hole in the side resulting in apple juice everywhere. Mark (Dad) said he saw it coming but it was too late to stop it. Fortunately we were 1. outside, 2. had a change of clothes, and 3. heading home right after that! We laughed after the day we had what else could we do and as I said to Mark, a year a go he was not strong enough to have pushed his fingers through the cup! We arrived home after 8pm and I immediately had to bathe the sticky off Mark Henry, get him to bed and then deal with the sticky clothes and even had to wash his shoes!