MMW has had a great week with a low sz burden, he is trying everyday to talk and trying so hard to get his words out. I was with him on Wednesday & Thursday and very happy to see that he is awake and alert most of the day. He still takes a nap here there there but is awake for most of the day!
Wednesday (5/15/24) MMW was scootering outside with Anita before I arrived and doing really well, he had not done this in a little bit so it is good to see him working on this again. Once you get his hands moving and talk him through what he is doing, once he processes it, he will start working at the task. He was resting when I arrived and after a little bit of time, we went out to the living space and sat on the couch, he decided to take a small nap and woke up happy and smiling!
I decided to put him on the floor and he was sitting very well on his own as he was leaning up against the couch. He was very content sitting on the floor with his arms resting on his knees.
After a bit of time he was trying to say something with an "M," I asked him if he wanted to listen to Post Malone and he replied with shaking his head "yes" and saying "oh boy!" He started moving his fingers and swaying his head back and forth. He was watching the video on phone with excitement. Unfortunately at 730pm he had a sz and that was the end of his day. This was the first sz I have seen in two months, just like riding a bike as I jump into action and call for Anita. His sz's are not as strong as they used to be.
Thursday (5/17/24) - I had a meeting with KSD to go over MMW IEP, MMW was alert and watching everyone on the teams call. He was looking around and listening as we were talking about school hours and going to school. He all of a sudden had big eyes and was shaking his head "no!" This seems like he is starting to understand what is being said around him and will respond at the right moment. MMW started to put his hands on his wheels so we all took him outside to see if he wanted to scooter. Down the walkway and up hill he decided to go with Jenn guiding his chair. He was using all the strength he had to get up hill and saying "oh boy" as he went. He wore himself out, we transferred him to the couch to be a bit more comfortable and he took a quick nap. AK came for his monthly visit. This was the best he has seen MMW, very alert, trying to talk and happy. MMW was trying his "Mmmm" word, said "oh boy," and would respond to a few other questions. In a video I have of MMW is is sounding like he is saying "forget about it." After AK left we put MMW in the stander for a while and he was watching Boss Baby, during a part in the move where they made a joke, MMW laughed at the right moment like he understood what was being said. These are him moments of clarity that we are seeing more and more during the day. The boy was starting to get sleepy so off to bed and he was out for the night. He has been sleeping really good, still awake at times in the middle of the night but goes back to sleep. Anita will use MMW phone and video him laughing, taking off his biPap or sitting up. At times he is super interested in the floor and will try to reach it or trying to move his legs so he can stand.
Anita is now able to draw MMW blood to check his levels. The last draw was in March, she was able to draw his blood on May 17th, 2024 and we got his levels back the next day. Pheno 30.9 down from 40.6 on March 22, 2024, this is the lowest it has ever been and MMW is doing great with his sz burden so far! Since I am not a doctor, I am not sure what all the test mean, but they are almost all in the green range so that works for me! This is much better than the report he had back in March.
Valporic Acid (Depakene) 58, Sodium 142, Potassium 4.0, Chloride 102, Carbon Dioxide Total 30, Anion Gap 10, Glucose 76, Urea Nitrogen 9, Creatinine 0.56, Protein 6.0, Albumin 4.1, Bilirubin 0.4, Calcium 9.6, AST (GOT) 34, Alkaline Phosphatase 61, ALT (GPT) 80 (in the HIGH level), Immature Granulocytes 0.03, WBC 6.11, RBC 4.47, Hemoglobin 14.5, Hematocrit 43, MCV 96, MCH 32.4, MCHC 34.0, Platelet Count 169, RDW-CV 12.4, Neutrophils 2.25, Absolute Lymphocyte Count 2.43, Monocytes 0.39, Absolute Eosinophil Count 0.89 (in the HIGH scale), Basophils 0.12
Saturday (5/18/24) - Anita was telling MMW she was taking him out of his room and he replied with "I knew it!" MMW has been saying "I'm so confused" over the weekend, he will look around the room with a confused look on his face and seems scared at times. This is one of the hardest parts of decreasing his Pheno is MMW becoming more aware of his different surroundings and trying to slowly explain to him what has happened. He is trying more and more to get out of his chair and want to walk. We do not know what he understand or what is going on in his head as he is becoming more and more clear. Does he still think he is 17? Is he wondering why he is in this different place with different people? Does he wondering where is room is, where is family is? All these things I struggle with having to explain to him when the time is right. I will be the one to tell him about his journey and what has happened to him, I am the one who found him on 12/17/22. The day that changed our lives forever.
I am now in search of a gait trainer, MMW used one a year ago at SCH and is in great need of one now. This trainer is different than a stander as it allows him to use his legs and walk around. He is elevated with a seat that is attached to the trainer to hold him up as he moves his legs.
As we are moving closer to Summer, please reach out and come see MMW. As he is becoming more awake he would benefit from hearing familiar voices and seeing familiar faces. It has been a very long journey to this point.
MMW GFM
