Sunday, May 30, 2010

May Quarterly Appointment and other Stewart new

We had Ashton's quarterly appointment this week, and it was fairly uneventful, which is GREAT! She is 23 lbs and 31 inches, and they are continually amazed at how well she is doing. They did measure her for a vest that will take the place of manual "bopping" for her treatments. She has to be 18 months old (she will be Wed.) and 19 inches around her chest to be able to wear it. She is 18 inches, so we still need another inch. I am VERY MUCH looking forward to this vest, as it is getting increasingly difficult to do the manual chest physical therapy. I cannot do it unless she is asleep, which is not a big deal at night, I just put her to sleep first. However, getting her up in the morning to do it and keeping her asleep is a whole other story.

The one kink to the vest is that we found out it is quite pricey. Of course, any medical equipment is, however, we also found out that neither of our insurance policies cover it. Needless to say prayers in that department would be very much appreciated. When the time comes, we can appeal the insurance company, and we will... it will just take some time.

We also discussed vitamins. The CF vitamin they prescribed for her is nasty and frankly she stopped taking it at around the time she stopped eating baby cereal (around 11 months or so?) She would only take it mixed in that, and she just decided no more. If you give it to her straight she throws it up. I discussed this issue with her drs and they said we would discuss more after we got her vitamin levels back in Feb. At that point she had been without it for several months and everything looked great! They never said anything about it, so I just started giving her a quarter of a Flintstones vitamin. Now, this might sound negligent to some of you who are familiar with CF. But let me remind you that the difference in the vitamin for CF is that the A,D,E, &K fat soluble vitamins are in water soluble form, due to the fact that people with CF that are not pancreatic sufficient cannot digest their fats very well. However, Ashton is very blessed to have NO PROBLEM with that. So I NEVER understood why she was on this vitamin, and they could never tell me. When they acted all concerned about her not taking this vitamin any more, I questioned them on what the problem was since her panels were fine with NOTHING, I was giving her SOMETHING now, and there was no need for her to have a CF specific vitamin. The answer I got was "Well, now you're getting into a gray area." and "Better safe than sorry."

Needless to say I felt about two inches tall and I have NO CLUE how I am going to get her to take this. It is frustrating, to say the least, just because EVERYTHING thing we do for Ashton, the appointments, the treatments, the vitamin, everything is on the "better safe that sorry" mindset. I do agree with this, don't get me wrong. I pray that everything we do can keep her symptom free. That is the goal and the purpose for it all, and I know, as I have said MANY times before, how blessed we are... but that doesn't keep it from being slightly irritating when you have been there for 4 hours and you are told your child has to take this nasty medicine "just in case" even though her specific illness doesn't require it, and they offer NO solution as to just how to get a one year old to swallow it and KEEP IT DOWN!

Okay, enough of that. It truly was a great appointment, and I will update when we get the standard cough culture back. Of course we are praying she doesn't grow any bad buggies!

In other news, Jackson Graduated from WEE School this month. It was a wonderful program and of course I bawled. I bawled because he is growing so fast, I bawled because he wasn't with the same group of friends he started with in Wynne (and neither were we), and I bawled because they played a sad song, lol:)

He also started playing T-ball, and the only part he likes is batting (I think) and the icee he gets at the end of each game!

We have a busy summer coming up with VBS, swimming lessons, vacation, and Aaron is going to be gone A LOT... that part is not so fun.

Oh, one last thing. They really didn't discuss the meds in the pipeline that were mentioned in my last post. I suppose because they are not really available yet... but we are STILL excited about that one.
Okay, another thing! Ashton's Army raised over $2,000 for Cystic Fibrosis research. I want to thank the entire team and everyone who donated. We love you, and get ready for next year! I'll post the final amount as soon as I have it! If you are waiting on your t-shirt please don't give up, I'm working on getting it to you:)

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