New Found Freedom

As you may have seen on my facebook page, Jonah has some fancy new wheels! He is walking with a walker on his own! This has been huge for him and his independence. Many firsts came with this walker. He walked himself into the therapy clinic and he has attempted to “run” (walking really fast) when he got excited. He has the biggest smile on his face with this new found freedom. 

This week we attended a homeschool co-op at a local church. While Eyla was in class, and Jenny was being a menace in the nursery, Jonah and I took the opportunity to walk the carpeted quite halls of the church. He navigated his walker all over and even up and down the sanctuary aisles. On this walk he stopped to look and check everything out. He has never been able to explore the world like this, and he is taking full advantage of it. He wanted to touch the stained glass windows and see them up close so he walked himself over to the windows, then he wanted to see what the maintenance man was fixing so we walked over to the sound of the drill and watched him for a minute, then he heard people chatting so he walked down and turned the corners of the offices and peeking in on the pastor and secretary, then he stopped to feel the wall mural. The whole time I just followed and let him do his own thing. He was so quiet and inquisitive. It was such a joy to see him do anything he wanted and to watch what interested him. He got to panting and getting tripped up on his feet so I knew he was tired and needed to rest. That was his longest walk ever. 

This is also the first time we have seen his natural gait without holding on to someone and we have observed a limp/drag on one side which is causing a good bit is side swaying/waddling. PT has shown me how to help stretch his leg and feet muscles. Hopefully it’s just from lack of use but we need to see how it develops over time with all the walking. Prayerfully it resolves on its on. 

Today we went to CHOA (children’s healthcare of Atlanta) for a "delivery" appointment to get his AFO leg braces. They had them custom made when they casted his legs last month. They fitted and adjusted them today. He came home with new shoes as well. With these braces he can’t wear normal shoes anymore. He has to have special shoes made for use with these braces. In the past with the other braces we were able to use certain brand children’s shoes that came in WIDE such as stride rite and remove the insoles for his braces to fit but that’s not the case with these. These new braces are much bigger. Thankfully we were able to bill insurance for these special shoes so hopefully that’s covered! He tolerated them for a couple hours. I’m not going to lie they seem very irritating. We have to work our way up to wearing them full time (unless he is sleeping). It has caused him to struggle some with pulling to stand up and crawling since his ankles do not bend in these. He will have to adjust his body movements to compensate for his fixed ankle. We hope he does adapt and that he doesn’t just stop trying to crawl or pull up etc. He tends to stop doing things when met with resistance, so we have to see how he does. He got good practice in of using his one functional word of “no” when at CHOA and getting the braces on and adjusted. Haha There is always a silver lining, right? When he gets really aggravated or angry is when he tries the hardest to speak. 

Right now we are working hard to walk more with the walker and crawl less, unfortunately the walker is bulky and you never know how inaccessible a place is until you need it to be handicap accessible, so at home his walker can’t go everywhere so he still crawls a good bit. We have removed some furniture and baby gates and made his spaces as wide and accessible as possible for him. We are using it as much as we can and as much as he can handle. He does fatigue quickly and needs to sit and rest. I also believe he is even a bit sore, like you would be after a workout, from all the walking his body is not used to. 

On the Occupational Therapy side we had some big wins as well.

For the last year his precious OT has been working to get him to place items in a container or put a small object through a slot like a coin into a piggy bank. Today he did BOTH! OT and I were both crying! He didn’t just do one. He did both and he did it repeatedly! This is huge growth in his fine motor skills which he has not had until now as well as a developmental milestone met!

She asked me again today what his new medicine is he is on as it’s just astounding the progress he is making so quickly now. I honestly want to shout from the roof tops about this peptide. If you or someone you know has autism they need to find Dihexa and get on it ASAP. I plan to find ways to advocate for this treatment in the autism community because this needs to be available to every child suffering from autism! Please if you know anyone that has autism and their parents are seeking help send them my way. Let me help them find ways to get this same treatment. It’s out there and it’s available and more people need to know about it! I thank God for this medicine and what it has done for our boy, and we are just getting started! 

Sidenote: This peptide medicine was originally used to help patients with Alzheimer’s and dementia and it’s working wonders for those people as well!

Prayer requests:

-          He will tolerate the AFO braces

-          He will take to walking even more

-          His limp will resolve with no issues

-          He will eventually walk away from the walker and be fully independently walking!

-          Speech (as always) Full conversational speech is our specific prayer. 

Love you all,

-The Mabes