Thursday (4/25) got to the boy just as his last session of PT/SP started and he was a bit spicy!!  I could hear him saying "NO" from the living room and his therapist's laughing and so excited to hear him talking and shaking his head no with a smile on his face!  After a bit of time they worked with him and the piano, using his jazz fingers he was super concentrating on what he was doing with his eyes closed and fingers still moving.  SP mentioned that she has seen this with other patients and it is common for them to be super focused and still play music.  Normally when the boy is done playing he will take his hands away and interlace his fingers!  Standing in the bathroom at the sink and up/down standing while he is holding onto his chair. Towards the end of therapy MMW was saying "hello," funny how the boy hardly talked in the last two months for his speech therapist but on the last day he decides to talk a bunch! 

Anita said that MMW did not sleep much the night before and was escaping out of bed head first.  She was in another room and heard his biPap beeping so she checked on him, he was almost to the floor with his legs only on the bed!  The boy had somewhere to be at 3am and wanted to go!  

IEP meeting with Kent School District (KSD) to go over the plan moving forward with homeschooling, PT/OT/SLP and the potential of MMW heading to campus for the next school year.  Working on MMW goals for his therapy and homeschooling will start Monday (4/29) for 90 minutes, two times a week.  

As we were getting ready for his typical days with me (shower/shave) MMW had his hand on his chest and I asked him to grab my hand that was out in front of him.  He slowly moved his left hand and grabbed my hand purposefully!  We shook hands and I said hello!  This are all great signs that he is able to follow a direction, the problem right now is that these moments are not consistent.   After his shower he tends to get sleepy if it is later in the evening so we hung out in his room and I played some videos for him while he was in/out of sleep.  I always tell the boy that I am leaving and when I am coming back, this day was harder than usual.  I was telling MMW that I was going home and would be back on Monday, he reached over, put his hand on my hip, looked at me and said "No."  Always hard to leave on a Thursday, especially this Thursday.  I do not know if he is aware of what is being said or what the days are but it still hurts when it fits with the conversation.  

Monday (4/29) Day 500 and back to see my boy, he was awake and working with his new teacher.  This was the first time she has met MMW and I am glad he was having a good day with no sz activity since Friday (4/26).  She was working with books, music, one big button that would say "music on" when pushed.  She would stop the music and then has him if he wanted it back on, push the button and we would help him with his fingers to understand what to do.  We know he can push buttons as he has jazz fingers for the piano.  She decided that if MMW is awake and participating then she will stay for 90 minutes and then if he is not as much she will break it at 60 minutes and come back for a third day.  I like that she is super flexible and wanting to work with MMW.  At his upcoming IEP meeting we are going to request for services to extend into the summer and not end when the school year ends.  

MMW was awake the entire time I was with him and trying to talk a lot more than he has in the past few days since his Valporic Acid (VPA) increase.  He got some sounds out and his favorite word, I couldn't understand what came after fu*k, but he had something to say!  It has been a while since I have given him any thing to taste to I gave him a tiny bit of yogurt, he wasn't much of a fan and gave me a face!  Maybe that is why he was saying the F word!  Time for a shower and the boy is still awake!  He did bring his hands up to help wash his hair and has been able to help with his hands to wash his shoulders.  With guidance and help he will move the soap around with purposeful motions.  Same when we put lotion on his hands and tell him to rub them together.  Normally when I am brushing his teeth, he will open his mouth when asked.

Clean, dressed and out to the living room to hang on the couch before I left.  Played a bit of piano and that was it.  Asleep he went sitting up, transferred him back to bed and he did not wake up until hours later.  He had been awake all day long, which is good for his internal clock.  

Pheno reduction will start on Wednesday May 1st, I wanted to get through April with a new record before messing with MMW meds!  The new number will be on the next post as we are hours from the day ending!  Pheno is changing from 40.5 mg 2x a day to 24.3mg 2x a day, his evening dose of Pheno will remain the same.  I am a bit nervous to see what this does, since he has had such a good month but I know there will be a plan in place to increase a different medication.  We need him off the Pheno to become more alert, to talk be more aware, to be able to follow directions and one day to be able to walk.  All goals we have for the boy.   

Today (4/30) day 501 since my boy has started a new journey that took us all out of our normal day to day lives and threw us into a place we never even imagined we would be.  The number seems unbelievable and yet the time that has gone by feels like a lot longer.  For me living a new way of life, one at home and one visiting my son.  Leaving him every Thursday wondering if he really knows that I am gone and heading back at the beginning of the week to prepare myself for my time with him.   Still grieving the loss of my boy and learning how to parent him in this new way, "parenting" is a word now that I struggle with and try to accept everyday.  I have a hard time with feeling like I am parenting my son now in the state that he is.   A feeling that is so hard to understand after raising my son for 17 years 10 1/2 months and then life changed so quickly.  As a mother planning for the end of HS milestones turning 18, prom, graduation, becoming an adult, college, breaking hearts and now we are starting over with some things but the majority he will not be able to have a redo and that is the hardest part for me now and to have to explain to him when he is aware of what has happened and what year it is now.  I can only image going to sleep on 12/16/22 at 17 years old and waking up a few years later.  My heart breaks for this conversation.

MMW story GFM