Medical Stroller for Quinn!

Woo hoo! we are finally getting a medical Stroller for Quinn! The one that we are getting looks very medical, but we really needed something to be able to hold the E tank and so they ordered a Quickie Zippie for her! http://www.austechmedical.com/manual-quickie-zippiets.htm  they are even going to put her name into the seat, which is totally cool! They came out to our home and took measurements. It's going to have an IV pole, a tilt option and we can fold it up and put it in our car. It also has bus tie downs. One of the biggest things is being able to hold the tank, since that seems to be our biggest hassle. I really hope insurance doesn't take a long time to approve it. Quinn of course, chose the sparkly blue color. she LOVES the color blue : )

In other news, Quinn seems to be doing ok. We are still having the same stomach issues. She's taking 1.5 caps of mirilax with water throughout the day, 4 doses of 5ml of lactulose, plus 1 tablet of senna and she still seems to be getting backed up and pooping out hard stools.... sometimes diarrhea and this comes with some stomach cramping too. And of course, lots of bloating still. We are going to see the GI doctor next week, and get his opinion on how much we are giving her in laxatives and such. It just seems like she absolutely cannot go without laxatives anymore, so i don't understand this and I hope we can figure out a better bowel management. I give her prune yogurts and probiotic foods too. Seems motility has slowed down pretty significantly recently.

Quinn is also still unable to shake this cough that has been with her for at least the past two weeks. It doesn't seem to be causing her very many problems though, it's just a cough. I've been contemplating on whether or not to take her to see the pediatrician regarding this cough, but it just seems like such a mild thing to be going to the pedi for. He'd probably tell me nothing anyway. LoL!

And still no word from surgery on a date. I think my family and I have all been debating this surgery. It's been many, many months since the Jtube was first brought up. I do not think at all that this would be an abrupt decision. Her docs seem to be in agreement with the surgery. We actually have a pediatrician, 3 GI doctors and a surgeon as well as his staff who feel that this is a good option for her and she is a good candidate for the surgery and healthy enough to not encounter any serious complications. I'd still like to speak with her GI further about this, but I think we have all agreed that it's best to do this when she seems to be healthier than she has been in recent months to try and give her a better recovery. For one thing, they will be doing the biopsy, and for another, if we do not do this now, I am almost certain that this will continue to be looming over our heads for a very long time until it becomes an emergent thing.

We are still waiting on the results of the test to determine if her body is absorbing her seizure medications. We've been getting lots of run-around from the nurses and they keep telling me that a doctor has to look over the results... it probably means nothing... but it's been a week since we drew her blood and I'm so sick of waiting for results... especially because they are likely going to be normal. if they are not good, and she is not absorbing her medications, we can only figure that she is likely not absorbing any of her medications, which could be a reason why her bowel meds are not working. I'd like to know this NOW... lol!

I love it when she sleeps like this.