So I've had the intention to Blog every day for weeks. I just realized that it has been like a month since you all last heard from me. Today was a full day so it's the perfect day to blog.
I have been preparing myself mentally for the switch to a gluten free lifestyle. My biggest concern has been that Jasz is so picky, if I take away what he will eat, what's left? well I have since discovered some alternatives that will do. For example, he will eat his almond butter sandwich on rice cake just fine in place of bread...yeah!! I can do rice crispy Chicken nuggets. I also discovered today that Trader Joe's has gluten free frozen waffles. I kept getting asked by the OT if I had made the switch yet, and I think I am finally mentally prepared.
Jasz had some more blood work done today. This time they are running his blood through a data base to check for any genetic anomalies. This also means we add to the future knowledge. If he tests positive for anything weird, we all get tested for free. This will for sure determine if we have the CPTII gene. It will also let us know if it's even possible for Jasz (and Alina too) to have a gluten intolerance. If you don't have the marker it's not possible. We also had them run a glucose level test on Jasz. The reason is that several times I have changed Jasz in the morning his urine literally smells like maple syrup. Now he was already tested for maple syrup disease and he does not have it...so the next bad alternative would be diabetes. We are ruling it out. Dr. Carter actually believes that is is an effect of him being a so picky. There are nights he goes to bed without eating because he refuses what I've made. She told me that fasting can cause people to throw ketones into their urine which would cause the sweet smell. I hope she's right, but I'd rather rule it out to be sure. During this blood test he broke out in hives along his arms something fierce. I wonder if he has a latex allergy? His arms are still really itchy to him.
Not sure if I wrote about this before or not, but we noticed a couple of month's ago that Jasz is significantly stronger in his left leg than his right. It becomes glaringly obvious when he tries to walk up stairs. He can almost not do it leading with his right foot. When we saw Dr. Carter last I mentioned it and her red flag alarm went off. So I began the worry cycle again although not so bad this time as he over all seems to be doing well. She tested his reflexes and although they are now existent they are still diminished. But they are equally diminished. So she suspects he has a structural issue going on. She asked that PT work on specifically strengthening that side of his body and if it's not improved by our April appt. she wants to do a sedated MRI.
When I brought this back to the OT and PT, Sherry began feeling Jasz' back. She has for a while suspected that he has something going on in there because he seems sensitive at times, and he is sway backed. He was extremely sensitive and putting all the pieces together we no longer think his "ow, ow, ow," is a game to get out a task. We believe he is hurting when certain places are pushed or certain muscles are used. It is likely we will have to do the MRI in April. It has been a month and we have seen minor changes but not a resolution to the issue, and we really do need to see what is going on in there.
Today was another meeting to determine whether Jasz will continue to receive services. I am happy to announce that yes Jasz still qualifies. Given the Neurologist gave specific things to work on and Jasz is still 6 months behind in Gross motor and fine motor skills, we still have lots of work to do.
I am increasingly concerned with Jasz's skin and the lack of concern by Dr,'s. It is constantly itchy, and bumpy...it ALWAYS bothers him. Poor guy!! I want to know what is causing it so we can eliminate it!! SO FRUSTRATING!!!
I did get another compliment today. This time though, Sherry said in front of the service coordinator. She told me she wants me to realize that if Jasz had been a part of almost any other family he wouldn't have the progress they've seen. she told me it's because we follow through and are willing to try the crazy techniques they recommend. Which is true, we even tried sewing his pant legs together. She said it's because of that that we have seen such success. Natalie the service coordinator whole heartedly agreed. She said that so many parents think the two hours a week their child gets worked with is supposed to fix the problem. She said that they are really their to teach the parents how to help their child and most people don't get that. So I do feel proud that we've done the work and so we're seeing results. Sometimes it gets annoying that a trip to the park has to be used as a targeted strength building exercises, I can't just let Jasz run amok, quiet reading time needs to have a neoprene wrap around Jasz' Torso, which means uncomfortable reading time for him. But in the end it's because I am willing to structure our lives as such that he is improving...and I love seeing the improvements and seeing him enjoy the newly learned skills as well. Sorry for the ego moment, but sometimes I need to take those.
Thank you all for your kind words of love and support, please keep it up, it really helps a lot.