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Update on us

Posted by on Jan. 20, 2015 at 7:57 AM
  • 16 Replies
Well, hi. Sorry I've not been around much anymore. Frankly I was just depressed with all that's been going on with Ty. Every time we turned around he was in the hospital. He is still on TPN but we've at least started formula feeds again. He's growing really good. We are desperately trying to get him off the TPN. We are heading back to Cincinnati Childrens for manometry testing again which we did 2yrs ago. Not necessarily thrilled as I have 0 hope of finding anything. My hope is we could get him off TPN before that so we don't have to go, but I doubt it. Frustrating.

Ty is excelling in school though. He's currently in an extended resource class with 9 kids, 3 paraprofessionals, and a special ed teacher and then he goes to general Ed classes (with a para) throughout the day. At the beginning of the year they wanted to hold him back in kindergarten but we fought it and said no. I'm happy to report that next year his teacher said he can go to general ed 2nd grade and become a normal resource kid and have pull out time for special ed instead!!! He'll be in a normal classroom 90% of the time!!! So proud! The only obstacle is his health issues so the teacher is urging the district to get him an aide next year. Otherwise it's Ty, 30 kids, 1 teacher and if something happens, the teacher is alone with a bunch of 2nd graders. Can't just leave them to take him to the nurse or attend to an emergency. So they have 8 months til the next yr, heres hoping they get it done. Getting off TPN makes that easier too.

So, yeah. Currently he is doing better health wise. He got a new central line put in the week of thanksgiving. Since then he made it almost 2 months without a hospitalization. Longest streak at the moment. He's doing better overall. Neuro just told us we only have to come back once a year and call if anything changes, that is awesome!
by on Jan. 20, 2015 at 7:57 AM
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Replies (1-10):
Robin-Christine
by Member on Jan. 20, 2015 at 8:00 AM

What is TPN? Do you live in Cincinnati? Updates on school is great news

Mipsy
by Chelle on Jan. 20, 2015 at 8:06 AM
TPN is Total Parenteral Nutrition. It's nutrition given through an IV (central line). We don't live in Cincinnati, we live in AZ =/ so you can understand why I'd rather not go

Quoting Robin-Christine:

What is TPN? Do you live in Cincinnati? Updates on school is great news

letstalk747
by Ruby Member on Jan. 20, 2015 at 10:49 AM

 i sure hope he gets a aide for school , praying for you guys

Elyssa414
by Elyssa on Jan. 20, 2015 at 10:58 AM
Totally understandable that you've been a little depressed. I can't imagine the toll it takes on all of you to not be able to feed him! :(

Hooray for good school news!!
jjamom
by Michele on Jan. 20, 2015 at 11:00 AM
Hoping he gets off TPN before the appt. how long before the appt?

Excellent news about school! I am so glad for him and I hope they get him an aide before Fall. Its crazy sometimes how long things like that take!

Keep us posted!
Bluecalm
by Silver Member on Jan. 20, 2015 at 11:10 AM
I hope he can get off TPN before the appointment.

That's great news about school!
mandee1503
by Amanda on Jan. 20, 2015 at 11:14 AM
I hope they approve the aide! Hey did you use the private jet company last time? My friend is having tons of issues with her sons gi and I want her to try the clinic at cinci. We both think he might have EOE markers but the gi she's seeing is telling them to wait and see.
Pukalani79
by Silver Member on Jan. 20, 2015 at 11:39 AM

 That's awesome he's doing well in school. Way to go Ty!  I hope that they can work out the aide for next year

Mipsy
by Chelle on Jan. 20, 2015 at 11:49 AM
2 months. So we've got time. We are going to talk more to his GI at his next appt in a couple weeks

Quoting jjamom: Hoping he gets off TPN before the appt. how long before the appt?

Excellent news about school! I am so glad for him and I hope they get him an aide before Fall. Its crazy sometimes how long things like that take!

Keep us posted!
Momof4AEMW
by Gold Member on Jan. 20, 2015 at 11:51 AM

Glad you are back!!  So awesome about school!  Hoping for that aide and to get off TPN!  Hugs!

what is manometry testing?  I have not heard of it.

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