Both had blood drawn and urine taken (also good stories) and the results came back with Jaden having a high level of yeast and bad bacteria in his GI track and stomach. He also had other problems with mitochondria function that will be issued later and has an immune deficiency. Because of the yeast and bacteria Jaden went on an antibiotic for a week and then for the following 2 weeks he went on an anti fungal. Jaden had about 8 or 9 supplements each day and some had to be taken at certain times of the day and some that couldn't be taken at the same time as others. Talk about a real life logic puzzle. Oh, and on top of that we had to put Jaden on a SCD (Specific Carbohydrate Diet). If any of you know what that is then you may have some idea as to the hardship Jaden and I are going through.
Brinn's results came back with a little more relief. Her yeast and bacteria levels came back normal so she didn't have to go on the SCD diet, but she still can't eat gluten or casein. But Brinn does have a mitochondria problem and can't make energy out of fatty acids so she is taking supplements that will help with that along with some supplements for her immune deficiency. She is actually on more supplements than Jaden which boggles my mind.
So just to paint a brief picture of my day I have to make different meals for each of the kids and make sure each of them gets their 8 0r 9 supplements at the right time of day. Then they both have 30 mins of listening therapy on top of Jadens 6-9 hours of ABA therapy a day and Brinn's 2 hours of RDI. They both have preschool 2 days a week and Brinn's school is 25 mins away where she also has therapy one day a week too.
Also, to add to the list, I have to make Jaden's ketchup, mayo, candy, bread, yogurt, and muffins because he can't have any sugar...I mean any. The only sweet things he can have is honey and certain fruits. He also can't have any complex carbs which means no grains...wheat, rice, corn, lentils, oats, nothing...only dirt. So his bread and muffins are made of almond flour (ground up almonds) it is about $10 for 3 cups. Also, it takes three days to make a loaf of bread because you need drained, home-made yogurt to make the bread.
So yes, my life is a little crazy and time and money are very scare and hard to spare. At one point I was encourage by Jason to make a 3 day visit to New York to see a good friend because I was going a little batty. So I used some frequent flyer points to get free tickets to New York and spent three days knitting, eating, and laughing with my friend Natasha. It was the was the best recharge I could ask for. Thanks Jason and Natasha.
So now I'm back and trying to pick up where I left off. But it didn't help that when in New York I started to watch Jaden's ABA sessions I recorded just before I left and seeing some of my instructors doing very unprofessional behavior. You would think that with a camera recording everything you do during a session you might be more aware of what you do. I found one of my instructors would just sit there for a good length of time just watching Jaden playing. Then they would take 10-15 min naps while Jaden colored on the walls or made huge messes. I saw the instructor waking up, wiping their mouth and seeing Jaden's mess and saying "oh, crap!" My thought was "oh crap is right!"
I started crying when I saw this and some of the other instructor's behavior and sessions. Some sessions only had 1 trial!!! No Reinforcement. I cried not just because I was wasting my money but because Jaden, who never sees the light of day, is stuck in this room doing nothing while my instructor sleeps or just sits there texting friends and talking on the phone. This poor boy's life is not easy and they only make it harder for him.Needless to say, I sent a very stern email out and I am holding a future mandatory meeting to re-train these instructors. I received many apologetic responses and I was pleased to hear them recommit to to promise they made when I gave them this job.
I will be making some changes though to help enforce their commitment to Jaden. I'm going to install a one-way-mirror on the door and NO cell phones are allowed in the therapy room. Also, they will be watching and critiquing sessions recorded of each other and of themselves periodically. I hope this will help.
But Jaden (despite the subpar instructors) and Brinn have both made great progress. It is amazing what you would do for your own kids that you would never do for yourself because of the work.
I just hope that God will bless my efforts.
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