Mid Summer Update

It's that time of year where the heat is rising, the humidity creeping up and the mosquitoes are biting! Despite that, we are enjoying a hot Minnesota summer. No complaints from these previous Florida residents, and knowing that sooner than we would like it, winter will be here again and likely we won't get the gift of the mild season we had last year.

Mark Henry's t-ball season came to a close at the end of June.  It was amazing to see the progress he made from the first game to the last, he really enjoyed it and can't wait to play fall ball.  The last game they had a visit from "TC" the Major League Baseball Minnesota Twin's mascot.  MH thought he was fantastic and gave him a hug!

They also received trophies, which are really cute. We didn't get a picture of him getting the trophy as in true MH style he was off in his walker and wouldn't stay still long enough!  The next day at breakfast I did get a nice shot of him with it, I said, "Show mommy your trophy!"  he looks so proud!

He continues with horseback riding and since making the switch from Freckles a larger horse to Molly a smaller pony became more settled and relaxed at riding, to the point his favorite way to ride was lying down backwards on his belly holding her tail!
Since we have him settled down and used to the environment and the horses, Kris, the head teacher thought it made sense to try him back on Freckles.  Freckles is a taller horse and will enable him to get a larger stretch sitting across the horse and has a longer gait, which will help MH with sitting up straight and working on his core.  His therapists have already seen progress since he starting riding just 8 weeks ago.
He rode Freckles on Monday and according to his personal care assistant (PCA) that took him he did great, sat up almost the entire time! I have taken him a few times to riding but he doesn't do as well when I am there as he wants to get off and be with me!
I will try to go again soon but may have to just show up and hide out to watch without him seeing me!

We had a nice 4th of July despite the 100+ degrees temps. We opted to go to a local indoor water park to avoid, bugs and sunburns.  We had a good time, Mark loves the water and they had a great lazy river with tubes we just sat and floated in as well as a wave pool and some kids slides.   Fireworks were seen on TV, as it isn't dark here til nearly 10pm, with this great long summer nights we have for a few short weeks, so it was too late and still too hot to go out!

We have visited the local lakes a couple of times and once is so close with a nice beach that his PCA takes him there every now and then for an hour of swimming. He has a little floatation thing, called a puddle jumper that is basically water wings, or arm bands attached to a piece that goes around his chest to keep him afloat. He does not like to be held in the water and knows how to kick and paddle to stay above water. Of course someone is always in the water close by to scoop him up if he forgets to close his mouth and drinks a little lake or pool water and reminds him to shut it and kick and paddle!  We will probably see about some swimming lessons at an indoor pool in the winter or next summer.

Mark Henry also started at a new therapy center for Occupational therapy and speech. Mark is loving it.  They have a very different approach and often the OT and Speech therapist work together with MH. They have lots of very sensory activities and rooms for him to explore. Just wish they had PT too!

We did see his Physiatrist at Mayo last month and had another round of Botox injections in his legs, which seem to really be helping him. He is really not crawling as much nor wanting to be carried and prefers a one or two hand hold or his walker or furniture to hold on to and cruise around.  We did have some concerns again about his eyes and vision. So I took him back to Mayo last week to see our Neuro Opthamologist, who had not seen him in a year.  He concluded what we already suspected that his left eye is turning in again : (  So we have to do either patching or drops again in the stronger right eye to force him to strengthen the weaker eye and then use them more together.   We hate to do the eye drops but its unlikely he will keep the patch on for the amount of time needed to make a difference. He also suggested we try his glasses again which may also help, now if I could just get him to keep them on!

We also confirmed his diagnosis of Cortical Visual Impairment, (CVI), that means he sees but the decoding of the images in his brain he doesn't see like we see. He sees details but in a complex visual image he has a hard time seeing the whole picture. He will see colors but high contrast is easier, black and white and placing things on a simple black or white background may be easier.  He uses a lot of peripheral vision and compensates for this by tilting his head up or down not only to help straighten the eyes but to see better. CVI has a range and he is higher on the range meaning he functions pretty well. Some kids with CVI may appear "blind" due to this brain issue but is that a brain issue not a vision issue per say, so they may have a hard time navigating space and recognizing faces or watching TV. Sometimes the CVI can appear worse if MH is tired or having to attend to a very visual activity that is hard for him. It can also affect balance and mobility skills, as it's can be hard to see where you are in space and depth perception for stairs or heights of objects.
MH certainly recognizes faces, navigates pretty well and probably watches too much TV!  He may need some educational adaptations at school and therapy from a Teacher of Visually Impaired but with this diagnosis we will get whatever he needs.

Mark is "talking" more and more, he is finally putting together more than one sound a and occasionally a word pops out like, "yeah", "duug" (dog), Dadda. Lately he is also making the ssssss, sound which is a hard sound but he walks around sssss, sssss, sssss, its cute and I go get his snake, "Jake" and say here's Jake he makes the ssss sound, and then name and show him other objects that make that sound.
We are still working with the picture exchange cards for communication and he does well with those when he is focused and wants to tell us his needs, mainly at meal time, but we hard been working on using them for activity choices too. We did get a stylus for the ipad and he has been working with as well but does seem to be doing better with the one finger isolation, and we found some new apps (games) to work on that too.

We will have a long day of appointments in September following up with his full team at Mayo. He will have a short EEG and then an appt with his neurologist to see if we can get the go ahead to wean him off some of his seizure meds. We have not seen any in so long, either the medication works great and/ or he is outgrowing them- which 50% of kids with his type of seizures do. So we are hopeful there.
We will also see the eye Dr for follow up as well as see his physiatrict again too.

Our big news is that our lease is up in our town home end of July and after much searching we found a new home to rent nearby. It's a single family home on one level! Which was priority number one on the list, given Mark's mobility challenges.  It has mainly hardwood floors so he will be able to be even more independent in his walker or chair.  Its in a nice neighborhood and has 4 bedrooms, 2 baths and finished great walkout basement which a nice yard. We are excited to gain some more space and a better layout for our family. However, it seems not long ago( just about a year) that we moved and it was a big cross country move.  So not really looking forward to the packing and unpacking but it is a local move and we have some time, in that we can get in to the house this weekend and don't have to be completely out of the town home til the end of the month. So the majority of things are in boxes, sans the toys that Mark Henry keeps taking out...he looks at me as if to say what a fun game put them in the box take them out!

The moving truck comes Sat morning and we will get the main furniture and stuff out and over to the new place, planning to sleep there Sat night assuming we get the beds set up. We can then finish any remaining items Sunday or the following weekend and finish up with any cleaning needed at the old place once its empty.  So we are excited to pick up the keys Friday night and walk through the house once more. Mark Henry will have his PCA on Saturday and she'll take him out so hes not too disrupted by all the moving, and she can bring him to the new place later on. Mark and I will supervise the movers and fill our cars with what we can take over.  Hopefully it will all go smoothly.
Our two dogs will stay at the old place until we get most of the stuff in and then we will bring them over.  It should all work out OK and at least its a local move right? No hotels, driving miles or flying or weeks without our stuff, living on air mattresses, this should be more simple, in theory, but its still a lot to pack and organize.  I am sure it will take a few weeks for everyone to adjust to the new surroundings but it should be great in the long run. If we like the home there may be an option to buy it at the end of our lease so we'll see if we do, and if its a good deal and then we wouldn't have to move again in another year!

Hope everyone is having a great summer and staying cool. Please comment below so I know who is still reading along and visited or send us an email we'd love to hear from you!