Thursday, August 23, 2012

Super Sweet Sophie - Remicade Update



I can't believe that tomorrow is Sophie's 5th round of Remicade.  I'm pretty sure I haven't blogged about Sophie since . . . .The Shit that is Crohn's.  If you haven't read that one.  Do it.  I just read it again and it made me cry.  I hate to cry alone.

As you can see from the above pictures Sophie is a little trooper when it comes to infusion day. She doesn't like getting the IV inserted (who does?) but the nurses and child life specialist help keep her distracted during insertion.  It takes about 4 hours and she usually plays Wii, watches movies, plays with the iPad and sometimes sleeps.  They still give her Tylenol and Benedryl before the infusion to counteract any reaction she might have.  Those 2 combined are enough to knock me on my behind!

All in all the Remicade is helping Sophie with her Crohn's symptoms.  It was truly a miracle how quickly it began to work in the hospital.  Amazing.  She improved within a day.

She has completely normal poops now and has also stopped bleeding.  Her labs have been slower to improve which is frustrating.  Her hemoglobin continues to stay a bit low and her inflammation although improved is still a bit concerning. We tried to go 7 weeks between infusions and that didn't work so we are going to stick with 6 and see how that goes this time.  The problem that we have now is she has terrible stomach pain.  Her gut just hurts.  A lot.  We started a new medication (took her off of Nexium) called Cyproheptadine (4 MG).  She has been on it for about 4 weeks -- it's supposed to help with the pain but I haven't seen a huge improvement but I'm willing to give it a little bit more time.  She can't do anything for a long period of time.  If we swim, she will swim for a bit but them wants to go inside and get in bed. It's the same story for just about any activity that we try to do.  She just doesn't feel great and it hurts this momma's heart.

I'm looking forward to meeting with her doctor tomorrow to get her thoughts on the continued belly pain.  They always do a blood draw so I'm going to ask them to run another Celiac screening just to rule that out.  Otherwise I'm at a loss.

All in all she is SO much better but just not quite 100% yet.  With each day we continue to have hope that the next process will improve her quality of life.  Forever Hopeful.

Keep calm and Hope on . . .


Tuesday, August 21, 2012

Back to School

School starts next week for my littles.  I've been counting down the days ---- truth!  Does that make me a bad mom ---- maybe?!  Or just a really tired one!  As excited as I am about back to school I'm just as scared and nervous.  I was doing fine until I started filling out all of the medical forms --- yes, the same ones that I filled out last year.  The diabetes ones are exhausting ----

Medication Request Forms
Diabetes Management Plan
Insulin Pump Physician Orders
Authorization for Administration of Diabetes Management and Care Services by Unlicensed Diabetes Care Assistant ---- what the what??
Section 504

The list seems to go on and on . . .


I find the 504 pretty easy --- cut and dry.  You will allow this and will not do this.  The management plan is the one that is so hard.  I find it incredibly difficult to plan out how to treat diabetes! When does diabetes ever stick to the given plan?

Here is what I have come up with for Super Nate:

Diabetes Management (Care Plan) for Nate
Our basic plan for care.

Diabetes Cheat Sheet
I have these laminated and hanging on the wall of any area Nate will be in during school

Section 504
Nate attends a public pre-school within our school district so he qualifies for a Section 504

Lanyard Tags
These are hanging on Nate's diabetes bag that goes with him everywhere
Huge thanks to Heidi at D-Tales for these.  HUGE HIT!!

Section 504 Information
I created this document to hand out at our last OmniPod meet and greet



I could not have done any of this without these great bloggers ---- Mommy bloggers are the best!  Thank you, Ladies for blazing the trail and making it so much easier for the rest of us.  










For Super Sweet Sophie and living with Crohn's Disease here is what I've come up with to keep her safe, healthy and happy while at school:

Sophie attends a public elementary school so she qualifies for a Section 504

We give this to all of Sophie's teachers and in the substitute teacher file


I'm still working on updating the documents for 2012-13 so if you think of anything that I'm missing --- give me a shout!  

Keep Calm and 504 on . . . .