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Ty update (and school too)

Posted by on Jul. 31, 2013 at 11:30 PM
  • 5 Replies

So I apologize in advanced if this gets long, LOL! I feel like so much has happened, haha! 

First: school! It starts tomorrow! OMG!!! Monday we had a meeting and met with teh district nurse, the school health assistant, principle, his teacher, and the classroom aide (who is there specifically for Ty, but we aren't having her like shadow him, but she will be permanent in there to keep an extra eye on him). We just went over everything again and spoke with his teacher and aide about everything. Showed them his tube and showed the assistant some stuff on it and explained how it worked etc.

Then Tuesday night we had a meet and greet. So we walk in and the principal sees us and beelines it for us and gathers our papers for us and talks to Ty and tells him they got solmething special for Zoey and he needs to find it and tell her what it is. She is so awesome, I love her! Then we kinda stood there looking lost for a bit so she came over and told us what to do so I laughed and asked if I looked that lost and she said "no, you look like new parents and this is your first time, no worries" LOL! Then we went to his class and his teacher came over to him and talked to him and then whispered in his ear there was a surprise for Zoey. So we found his desk and cubby and by his desk is a mat for food bowls to go on and a bowl for water for Zoey with her name on a tag like the kids have on their desks! So cute, I should have snapped a pic, I will tomorrow if it is there (Zoey isn't starting yet)! They are so awesome! One little boys eyes got really wide and he says "dogs are allowed here?" so we told him she was a special dog and he said "oh!" and walks off, haha! Tomorrow is his first day though, OMG!!!!


Then today he had his 5yr check up (a couple months late haha). All the normal stuff but we only spent like a nanosecond on the normal stuff, haha! His pedi is a special needs pedi. We spent 40 minutes with her! We went over every single detail of his stuff. We talked to her more about the GI stuff and she is gonna get with our GI and they are gonna discuss putting a plan in place for a jtube to be placed in a couple weeks if we are still having the issues we are having currently. Which tonight, Ty is horribly distended and crying again and just miserable. However he had a fairly happy morning. So there is hope he may be improving, just trying to hold on and give these meds time to work. Then we got to talking about his autonomic dysfunction and how Ty flushes so easily and sweats to death and the heat just makes him absolutely miserable (and we live in southern AZ, not ideal! And it was so sad at the teacher thing last night. We had to park not even in teh parking lot of the school cuz teh school is fairly small and had to park across teh street. It killed Ty walking that far in the heat. When we walked from teh gym to his class and he saw us going outside, he says "oh no, we have to go in the heat again" :( broke my heart). Pedi says there is a med that can help his vascular system work better and help better maintain him and give some releif, but we are waiting to talk with the cardiologist about it. She isn't sure if it will be an option for him. But then she asked if we used our handicap placard, to which we told her we didn't have one, so she filled out the paperwork and told us to get it. I told her I felt bad, it's just heat, and she laugh and says "It's Arizona!" lol, but she explained that to her it is about quality of life and she can physically see it's wearing on him plus having to carry his pump and stuff around. So we got that set up today. That was hard, weird I know, but it just is. 


So that is everything, wow! 

by on Jul. 31, 2013 at 11:30 PM
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Replies (1-5):
Linagma03
by Platinum Member on Jul. 31, 2013 at 11:52 PM
1 mom liked this

Wow! lots of stuff in just a couple of days! I'm glad you got it all done. 

darbyakeep45
by Darby on Aug. 1, 2013 at 7:02 AM
1 mom liked this

You are amazing mama...hugs!

arkansasmama08
by Gold Member on Aug. 1, 2013 at 9:08 AM
Wow. Have you thought about getting him a cooling vest? You can put ice packs on them to help him stay cooler in the heat.
mandee1503
by Amanda on Aug. 1, 2013 at 11:48 AM
1 mom liked this
*hugs* hope he has a great first day. We have a placard for Jacob. We don't always use it but in the heat it's nice to be closer to the buildings.
Mipsy
by Chelle on Aug. 1, 2013 at 12:15 PM

Honestly I haven't, well I have but I dunno if it is ideal for him cuz he is wearing his backpack all day, adding more weight for him to carry around, even if it is to help cool him, can actually do more harm than good for him, you know? 

Quoting arkansasmama08:

Wow. Have you thought about getting him a cooling vest? You can put ice packs on them to help him stay cooler in the heat.


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