It feels like my last post was not so long ago but a month has almost zapped by again. Life is basically going in the same direction and Gavin is doing great! The biggest change has been that we now give him a B12 injection every other night. This is definitely helping Gavin. We all think that because:
1) Although he is doing more therapy and school days now, which should make him tired, he didn’t fall asleep easily for naps or at night. He was probably going through a transition phase with all the new activity because it would take hours to fall asleep at times. But as of the past week, he is now falling asleep within 10 or 5 minutes no matter what kind of day he has had. I think this is because his body is more regulated because of the B12 saturation. (Wow, the B12 saturation? I’ll talk about that more later.)
2) He is smiling differently. His mouth is different. The way he uses his mouth is different. I read that B12 can cause the nerve signals in your mouth to have better pathways to the brain. He has been smiling extra big smiles where his top teeth show more than ever. He has let me put the toothbrush in his mouth during bath time for nearly two weeks now. He never let the toothbrush in before – he would always push it away. Now he will smile and even giggle when the brush touches his teeth or tongue. He doesn’t let me brush for very long or use toothpaste, but we are working on the sensory aspect of it. It’s coming along! Also he has been more mouthy, which is like a positive negative. His mouth is more awake which means he might almost bite us when he is excited, and he is putting more items in his mouth when he is playing, but it’s a sign of good things.
3) He has still been looking at my phone or watching some videos only occasionally. (Been using them as a reward to watch while I brush his teeth after breakfast and lunch.) I try to only let him use electronic devices after he is done eating, never during. Since beginning the shots, I think he is doing a better job of focusing on the books or activity while he eats. He also doesn’t get as upset when I take a device away. It’s like he has had enough and understands now that he will get it back again, at some point. All of this regulation must be from the B12. Gavin’s latest doctor told me that it’s not that we are treating him like he has a B12 deficiency but we are keeping his pathways saturated constantly by giving him shots every few days. He said eventually we can do daily. I’m still researching about all of it but so far it does seem safe. The B12 being injected subcutaneously allows the B12 to “leech” into the body 24/7. From this article: “The children who received the intervention treatment also saw increases in plasma methionine, decreases in S-adenosyl-l-homocysteine (SAH), and improvements in the ratio of improvements in the ratio of S-adenosylmethionine to SAH. This indicated that the children who received methyl B12 saw improvements in cellular methylation capacity.” There’s a lot more to it than this and I’d like to write a post about it soon. The hardest thing about the shots? Giving them. At this point I do it by myself because if my husband or MIL are in the room with me, I feel more anxious when I am doing it. I don’t know why! But so far Gavin only noticed the shot a few times and jerked. Most of the time he doesn’t notice at all. I do it at night after bath time before putting on pajamas. He is usually standing listening to music on the Amazon Echo (distracted by pushing the buttons) and I give him a quick poke and then we finish getting ready.
4) His obsessions are stronger at times though. This is mostly a negative thing but interesting to see and figure out. Lately in parking lots he wants to physically touch the numbers painted on the concrete, or he wants to rub the numbers on license plates. Before I would just read them but now he is pointing them out and touching them constantly. He is usually upset and doesn’t want me to put him into the car because he wants to continue going around the parking lot looking at numbers and letters. This is the most upset that he gets lately: when it’s time to go home from therapy or school and he won’t let me pick him up. I have to wrangle him and get him into his seat. He still will grab me and my hair. During those times I get sad because every other piece of the puzzle is getting easier each day.
I am staying positive and strong. I have to in order to make sure Gavin gets everything he needs and to figure out what is next. It’s a never ending quest. There won’t be a way to flip a switch and have everything be “normal” for us. There have been so many times over the past four years that I wish for it to be different. How I wish that Gavin and Liam can play together normally. How I wish Gavin could have all of his frustrations erased.
I keep thinking about a quote I read about butterflies. It’s keeping me grounded.
We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty.
Things about Gavin this month:
- Has laughing fits and you can’t tell what was funny that made him laugh. But that laugh is the sound of pure joy, a laugh that is not held back or inhibited
- Likes to watch the credits after a movie or a screensaver that is a clock or has words. It’s like things that are moving are addicting for the brain
- Likes to watch videos of cars, trains, anything moving quickly without stopping – again with moving objects being addicting