Our goals before kindergarten in September will be to work on tying shoes, balancing a bike, better hand writing and other things like remembering my phone number and what to do in emergencies. They almost have my number memorized, but tying shoes, balancing bikes and even full potty training (overnights) is very difficult for apraxic-kids, and the doctor gently reminds us of that so we don't worry and to know it will come with extra time. But, they are academically ready for kindergarten, so we're excited and happy about that! I know they are behind developmentally from other kids turning 6, but they are definitely getting there! They make us proud every day.
Jason has his coaches-meeting for t-ball this week and they officially start playing next week. They 'practice' each night in the yard and are so obsessed. Although they bat from a pitched ball at home, they still think t-ball is going to be, "super awesome", as Jax says.
An update on my journey of obtaining affordable medication for Jax continues. And I wish I was wrong, but alas, I was right about the 'program' for Jax's daily inhaler. So, once again, it took me 3 phone calls, 2 emails and one stop at the pharmacy to make a game plan with the specialist. Which is to pick up a few months of free samples from him on Monday and we'll decide in fall what medication to switch Jaxon to. He doesn't want him switched to an alternative right now I guess.
I'm nowhere further with his hGH medication either. The manufacturer of the medication called me on Friday to see why we didn't get it yet, and after my sob-story of how difficult the pharmacy has been, they are going to try and call and get it straightened out. And if a 3rd party doesn't help, they'll have the Endo-nurse call. All I want is an invoice to pay. I have no idea why they can't invoice me, it's so strange. And no one has TIME to make these many phone calls over one medication, it's just mind boggling to me! I have two weeks of his medication left, so this obviously has to be ironed out soon.
Jax has his 6-month follow up with the GI specialist and Feeding Team at Children's Hospital on Friday. I have a strong feeling we won't be taking any of this night tube-feeding away. I can usually tell if he's gained weight, and I think he's only maintained in the last 3 months (quarterly weigh-in with the dietician). His weekly private feeding therapist said he thinks Jax will need to stay on the same amount with his higher activity in the summer months. So, I'm trying to put my big girl game face on for that meeting so I'm not disappointed with the possible news of 'stay the course'.
|Even with bug bites everywhere, they still smile :)|
|Brady being Brady on the way to the pharmacy!|
|Silly before our bike rides!|
|Practicing their baseball|
|We snuck off to the pool Friday afternoon after therapy!|
|WHY is this sideways? (sigh) We took the boys to a church festival by our house and they ran around all afternoon with the neighbors going on the rides. I caught Jax doing the pee-dance coming out of the fun house :)|