The next 2 weeks

Jonah’s week was jam packed as usual. 

A couple things we saw this week were him pointing for the first time. He actually used his pointer finger and pointed at an object. This was spontaneous and he didn’t repeat it on command when we asked him to do it again, but he did effectively point to draw attention to an object. 

At physical therapy he successfully tolerated being on his back on a yoga ball to do some exercises. This is a big win since it’s been 1 year of trying to get him to do this exercise. They attempted it in Iowa this time last year and were unsuccessful and had to adapt the movement which consisted of the therapist holding him face to face, leaning over and tipping him back. He still did not tolerate it, but the adapted version was able to be forced essentially. This movement is very important in working the Moro reflex. This is something he struggles with a lot because when placed on his back he goes into fight or flight. If you have seen me talk in the past about our struggles to leave the house due to the inability to change his diaper in a public setting, its largely because of this reflex. It’s been a slow process to condition him to this position and movement. He will only allow his diaper to be changed on the ground. No changing table, no chair, no back seat. Nothing. Only the floor. It’s the only way he feels safe and doesn’t trigger a flight or fight response. I know what you’re thinking, “Just do it anyway and get it over with quick.” Well, if you knew the state of panic it induces, you’d understand. Pupils dilate, cold sweat breaks out, heart rate out the roof, flushed face, physical fighting, and screaming. Coming down from that intense of a response is long and hard requiring lots of support. It’s not a normal reaction. It’s pure fear, not being him being misbehaved, and it’s unnecessary to put him through it, if at all possible. Once we can work on his body and brain understanding this movement, this issue will get better and this week, we made our 1st step towards that.

Casey and I also watched as he played with a bath toy! He has never allowed anything to be floating in the tub with him. He has a few suction spinners on the side of the tub but anything in the water with him gets chunked out immediately. He loves baths even without the toys. He has just always sat in the tub and splashed. It was sweet to see him play. We don’t get to see him play much, especially not playing in a way that the toy is meant to be played with. If you know Jonah, he only has interest in things that spin, or roll, so he finds a toy and immediately tests it to see if he can spin any part of it or take it to a hard surface to see if it will roll. If it doesn’t do either of those, he discards it. 

In other news we are so thrilled to share that we have secured a local pediatric therapy group that does In-Home Intensive therapies for kids like Jonah. 

Because of all the donations we were able to book a 2 week mini intensive starting next week! They will be coming to the house making my life so much easier and working with Jonah in his own comfort zone. 

We have a big schedule for the next 2 weeks with this. We have paused all his weekly therapies since this 2-week session will be very intense, obviously. Jonah, however, has the best team of therapists and they are all scheduled to be here on and off throughout the 2 weeks to sit in on the sessions, learn, assist and support him. This is being done on their own personal time. I just them all for the devotion they have to him. 

I will be part of the sessions myself. I am trained in conducting transcranial photobiomodulation therapy with professional grade infrared lasers and I will be doing this on him simultaneously as they work his body. The laser therapy is done at the same time to amplify the brain and body connection. As they work certain areas of the body, I will laser the corresponding portion of the brain that the body movement is occurring at in the brain. This simple addition to regular therapy helps get the most out of the therapy and allow the brain to respond and absorb that. 

Since I will be assisting, I have scheduled my mom and mother-in-law to alternate days back and forth to be here to help watch Jenny and lend a hand. 

These next 2 weeks will really be a village coming together to help Jonah and my heart is so full. 

None of it would be possible without the financial support from your donations, the dedication and heart of his therapists, the love and support of family, and all the prayers!

“Thank you” just isn’t enough. This mini-intensive we hope will help the progress he is making keep its momentum until we are able to do a 2 week intensive in Iowa. (Iowa clinic is able to use high tech equipment and resources that only they have.) We want to take full advantage of this opportunity in his development to help him keep going and with how hard he is trying and the motivation he has right now we need to support that. 

Jonah has never shown much motivation to reach any milestones or master any skill which has made it hard on us all in therapies over the year. As you may know he attempted to walk for a few days last December and then stopped. There is no one explanation for these regressions some feel it’s physical, that he got fatigued. As he started to walk his body got sore and tired, he got weak and tired and gave up. It’s possible his body didn’t have the strength and support it needed to keep up with his motivation at that time, so he lost it. Some think it’s cognitive based. He may not have understood the benefit or reason behind walking so he deemed it not necessary. Some think it may be developmental in that he just didn’t have all the prerequisite milestones for the brain to develop that skill at the time. Either way, with the freedom he has seen and gained from the walker, the support of the leg braces, and added months of physical and occupational therapy we are in a better position than we were in December. 

Prayer requests:

-The intensive. The specialists coming in, the therapists and our family. 

Specifically, their names because I believe in calling upon the Lord for them BY NAME. 

Specialist OT: Bria and Specialist PT: Jordan.  PT: Karla, OT: Allison, SLP: Abby and our family. 

Thank you again.

-The Mabes