Rib Flare concern and a fresh buzz cut.

Jonah has had a wonderful week. His level of growth and progress has amped up so much and each week we are seeing improvements. The Peptide Dihexa he is on usually starts to see the biggest changes around 3 months but we have seen improvements much earlier as we are only 2 months in. This has been a blessing. This week he has started with some new babbles of “e-Ya” which has been done around Eyla and we believe his mannerisms when saying it indicates he is attempting to call for her. We shall see how that new sound develops and plays out. 

He is having some very intentional facial expressions too. Just today he was in the bath and I had a towel laid on the floor next to the tun because he splashes a lot. I stepped out to check on little sis and when I came around the corner he had pulled the whole towel into the tub with him. He looked up at me, grinned from ear to ear and shrugged his shoulders! He knew he had done something. It was a brief moment of purposeful, intentional nonverbal communication. Just another wow moment. 

It has been mentioned a few times but we have been told that Jonah needs some rib work to help with his rib flare. Due to the low muscle tone his ribs flare out wide and protrude. Rib flare is a condition characterized by the protrusion of the lower rib cage forward and upward. This abnormal positioning can be a result of various factors, including core weakness, poor posture, or compensatory movements during physical activities.

Rib flare can have several implications for health and movement:

This is another area of concern that intensive therapy can address. 

Last week I asked for prayers for reciprocal play and this week he instigated and played peek a boo with his PT. She was in tears, we both were. Thank you Lord! It was very meaningful reciprocal play. 

His posterior walker is officially ordered! We had to pay outright for one as CHOA was unable to locate one for the insurance to fill the order. Thanks to all the generous donations that was possible. 

Our plan is to take him to the library where it is carpeted, quiet, and calm to practice in a big open area. I am excited as I have never seen my son walk around out in public. That will be fun. Maybe he will learn quickly and can walk up and down the aisles of books! What a sight that would be. 

He was very overdue for a hair cut so my sister was able to give him a fresh buzz cut today. It’s a very traumatizing task. Takes 3 adults to hold him still and as calm as possible. We can no longer use scissors as it is danger to him grabbing at them so he has to have a buzz cut. It’s louder and he hates them but it’s safer. We have to keep his hair cut because he has a history of pulling it and it tends to reach a stage of sensory annoyance to him as well. We definitely have not made any real progress in that area YET. I'm so thankful my sister does hair and is able to do this for him in the comfort of our homes. She has even done his hair while he played in the tub. We get him his favorite snacks, tv show on to help distract him and he is in a place he is familiar with. We are blessed to have that opportunity for him and thankful for a patient aunt Jessy! While at my sister’s house he decided to go explore her house. She was just as impressed as us. He has never left the living room rug we set him on when we are over there visiting. Today he wanted to see more of her house I guess. Haha 

Thank you and know that every donation is being used to help Jonah, from therapy to mobility equipment!

We love you all,

-The Mabes