So, today we had parent teacher conferences at Jaxsons school and let me just say this boy is progressing so well! He loves to interact with all the kids in his class, and his teacher said he loves to dance. When they go outside, he will climb up the playground steps (with assistance) and slide down the slide. He loves to swing but has learned that if someone is in it he has to wait his turn. He does a little activity where he will take three laps around the playground, grabbing an object off the board each time, and he knows that when all the objects are off, it is his turn to swing. He also has a friend in the next classroom that has behavior problems, but when she does good, her reward is to come play with Jaxson and they both light up when they see each other. He’s doing very well with cause and effect toys and actually seems interested in them at school. When presented with two or three objects/pictures, Jaxson will choose the correct one when asked where is the _____? He does this at home as well, we have a few picture books and cards and I’ll ask him to show me an object. He already knows a few signs, but is now starting to imitate the signs for wait and happy. And my most favorite one, Jaxson is starting to color, place items on art projects, and snip with scissors!

One of the things I didn’t like about this preschool was I wasn’t given any kind of updates on what he does at school. It’s hard because he gets therapy at preschool and at home, we had no idea what they were working on there or when they were working on it. So some days he wouldn’t do well in therapy at home because he was already too tired from the therapy done at school. So now I will be sending a notebook with him so the teachers and I can communicate, as well as his therapists here at home. We will be able to tell them what he’s doing at home and in therapy and they will be able to tell us what he’s doing there. It will help us work together better and coordinate everything, so we won’t be on different pages.

He had in home speech and occupational therapy today and no school. He did so well in OT, he loves the therapist. He bounces on a ball, plays with different textures and colors. This was our second visit with speech, the last two weeks he was sick and we were out of town so he missed two sessions. He isn’t quite comfortable with her yet, so he didn’t get much work done but she was able to give me some suggestions on things to start doing. She’s going to look into getting a language device to see if that helps him communicate better, as well as cards he can use to show me what he wants. It’s so frustrating for me to watch, because I know he can talk. He use to say a few words and then just stopped. I know he understands what you’re saying because he will appropriately say yes or no. Because of the regression, and the fact that he’s so particular in what he does, we have an appointment next week to see if he has autism. I’ve always had questions about it, but when I brought it up to his therapists and doctors, they said he was too young to tell or was just developmentally delayed.

And speaking of appointments, we are still in the process of getting him listed for transplant at Lucile packard in California.  They submitted another request to insurance for him to be seen there. Since his insurance wouldn’t cover another full evaluation to be done, the team at Lucile packard reviewed all of Jaxsons information and concluded that they would just need to see him as a consult and get a blood type- even though we know his blood type, to be listed with UNOS, the center has to obtain it physically. Any other tests they would need to be able to list him could be done at his doctors office/hospital here. So, hopefully insurance approves it this time.

I would also like to share the information again about donating to help us during the transplant. Insurance will cover some, but I know I’m on my own for food, lodging and all bills back home. We are trying to save as much as possible, but because we are a one income family that lives paycheck to paycheck &  this could literally happen at anytime- we are not able to afford it all on our own. If you’re local in Arizona and feel compelled to donate (anything helps) you can do so at desert schools federal credit union. My dad set up an account to be used only for transplant related expenses; it is under the name Jeffrey Dahl Sr; Transplant fund. Or you can donate via PayPal with the email JaxsonsTransplantFund@gmail.com and that is linked to the bank account above.

My family also set up an online donation account, You can visit that page by clicking here.

Thank you to everyone who continues to read our updates!

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