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Cisco took his first true steps this Monday! He was working with his new PT (first real session as we did an evaluation before Christmas). He stood about 5 seconds at the end of his last winter hippotherapy session in mid-December and I have got him to stand a few seconds here or there but not by his choice. In our first session with Children’s Therapy Center his therapist had him standing 5-6 seconds several times and then had him walking with help down the hall. Then it was time to go back to his room and on the way in she had him walk toward her and he made it 8 steps with her scooting back then he fell on her. It was amazing. We have waited so long for this day. He will be 4 in February. This woman is amazing so we quickly contacted her after thinking more sessions during this important milestone would really help. We will see her two times per week this month and maybe next. During our second session this week he did 5-6 steps several times then 10 steps although he will only do 3-4 at home with lots of work and tricks from us. Unfortunately, we can’t keep up this pace for long. PT is our only therapy right now (we also do OT, speech and hippotherapy throughout the year) and insurance will only help cover 75 sessions per year of all therapies regardless of diagnoses. I hope to be posting pictures or video of his walking soon.

In other news, we have had a busy fall. During home-preschool we focused on learning colors through stories and art projects along with therapy practice. Cisco had weekly speech therapy that we discontinued because while his verbal skills are improving we felt our therapist was lacking new ideas, we did OT which we are taking a break from, and we did hippotherapy that is off for the winter. The NP at our Physical Medicine doctors office empowered us to take big breaks. She says that the present research is supporting intensive therapy with long breaks to helps families not become burnt out and better outcomes. I had been feeling this way but felt guilty when I felt we needed a break from one therapy or another.

For the winter we plan to focus on numbers and fine motor skills from wooden puzzles to Montessori type scoop and pincher activities in addition to walking/standing practice.

With Cisco’s mobility challenges our focus is all about therapy and basic skills.

I’ve provided regular progression updates for Cisco. My last was in December. Cisco continues to use Sure Step orthotics (the same pair he got in December) and his DMO suit (he outgrew the first one in 3 months, we are now on his second suit but hoping to find a more adjustable and affordable option if he needs to get a third support suit when he outgrows this one). In February, he turned 3 and graduated from the counties early intervention program. We really miss his PT but have continued to have therapy successes privately.

In the spring, he started hippotherapy. It has been the best therapy of anything we’ve done. He is so motivated by the horse. He loves the horses and gets excited when he knows we are going to see them. When we started in March, he could take no independent steps, after we stopped in June he could take 2-3 steps independently when pushed to do so. A few weeks ago, he did a one week hippotherapy intensive since hippotherapy is on break for the summer. It was great. That is the week Cisco started drinking from a cup while holding the cup himself and started crawling up stairs. We were sitting on the bottom of the steps waiting for his turn to ride the horse. I was talking and suddenly i realize he is crawling up the stairs to the platform he uses to get on the horse. The next day, the last day of hippotherapy, he did the same thing. It was wonderful. He’s now back to weekly sessions for the fall.

In the spring, Cisco also took a special needs My Gym class. He really enjoyed it and all the equipment was great for him to climb and explore. We expect to take another class in the winter after hippotherapy is over (there will be a fall session and then we take off the winter) but plan to take a regular class with younger kids as they were willing to let us do that. The special needs class was filled with much larger kids on the spectrum with no mobility challenges. The parents were constantly worried there rambunctious child would hurt Cisco. It wasn’t a good fit.

Cisco is cruising. He is using chairs or anything that will slide on our hardwood floors to push to get around. He can climb on the couch and is just learning how to climb off. He now crawls very well. He’s been experimenting with putting his bottom in the air on hands and feet. He can use his walker to get through mulch and grass now and over small steps. He can get his walker to go any direction he wants to go. He can go a few steps with his strider glider bike without support. We plan to continue PT after the fall hippotherapy session is over.

Cisco now has an Accent 1000 Augmentative Alternative Communication (AAC) Device (basically a tablet with a built in large speaker and picture based communication software). He seems to be catching on but has trouble getting his pointer finger to the right spot and maintaining a pointer finger. I think his vision presents a challenge too. We took a break from speech therapy for the summer but I feel after a break we can work with the speech therapist to make good progress. I have found that he has increased his speech and words quite a bit this summer. He uses two word phrases both verbally and with his Accent 1000.

Verbal Words: mama, papi (dad), door, car, go, that, caca (poop), meow (cat), roar (dog and other animals), der (water), mapa (mommy and papi), dad (his brother), bull, bye-bye, no, and he also attempts many words when we say them as well as has said several words only once or twice then not again.

Signs: water, door, light, fan, potty, done, more, wash, sleep, no.

New SMOs & Shoes

Cisco got his DMO suit a couple weeks ago to help with his posture (he gets very slouchy when sitting up and his lower back is starting to curve) and to facilitate independent walking. What amazed me was about 20 minutes after we put it on him and I put him on my back in our new Toddler Action Baby Carrier, he felt considerably straighter and lighter. No dead weight that has been killing my back. Unfortunately, it didn’t last. Now, for some reason, my back hurts worse when he is wearing his suit. I do notice his back considerably straighter when sitting even at the end of the day when we take it off. He also looks so much taller and straighter with it on when standing or walking. He feels less floppy when I hold him. It is definitely helping even if getting it on is not his favorite. Luckily diaper changes aren’t as hard as I feared.

Cisco also got a pair of SMO orthotics the same day to help provide support for his ankle in hopes of facilitating walking. It improved his stride immediately. He bends his knees when walking with them on but not when off.

He did have to get new shoes to fit the orthotics. I decided to see what the local shoe stores had before ordering special made shoes particularly because I heard they were heavy. I started at Stride Rite reading online that people had luck with them and they have double wide. Unfortunately even with his skinny foot, they didn’t work. He only wears a 5 and there was really just one style in multiple colors. It was a real pain to get on/off and the velcro barely reached across even with double wide. I then went to Payless (not my favorite place) and was pleasantly surprised to find perfect fitting shoes in 5W with a sole that came out and a front bill that was completely detached on the side for easy in and out. They were cute brown shoes with Elmo (once again, not a fan of character shoes but worth it). My only complaint is the lack of breathability. His feet are sweaty when I take his shoes off. I will have to find some sort of breathable sandal for summer.

Prior to the new orthotics and DMO support suit, he has been making progress with gross motor skills. He got a new walker from the county to try , a Little Kaye walker. We had ordered and returned a Snug Seat Crocodile walker after receiving it to find it was bigger then the old Ottoback Busybee he had been using that I thought was big. I am very frustrated with modern manufacturers of pediatric walkers. They promote long use but to make this long use work means that it has to be sized for the larger child (about the size of my 9 year old boy) to use safely and just adjust the handle bars down for the 2 year old to use. I got it for the attendant bar they told me was no longer manufactured upon arrival and the seat that could be flipped down but no one told me the seat wasn’t adjustable and way too tall for my 2 year old.

Back to the Kaye, I am so happy with it. It is an oldie but goody. A design that I’m told has been around for years but they have 5 sizes compared to the 2 for other leading manufacturers, making it much more suitably sized for my 2 year old. It is also very light weight. It has straight wheels that i thought would be a problem by Cisco just picks the walker up a bit and manipulates it in the direction he wants. He loves it. He has one on order right now we hope to get before Christmas that has an adjustable fold down seat, an attendant bar so I can safely guide him or can push the walker if he needs carried. Also, much cheaper then the Snug Seat. He has a little friend the same size that tried it who loved it too and she asked her mom if she could have one (they are in the market for a walker). He recently walked the mall for 20 minutes using it. With the added stability of his orthotics and DMO he his creating a nice stride using his walker for just that little bit of security and balance he needs.

Next on the list: treadmill therapy if I can find an inexpensive treadmill.