Friday, July 16, 2010

Patience is a Virtue

Or so my mom would always tell me as a child. I wasn't patient then and I'm not much better now, lol. It's all over and now we wait...

Well we made it home thanks to all the wonderful people at Children's Flight of Hope! Our flight was wonderful and I have to say I have dealt with more agencies, charities, and organizations than I can begin to count since having Riley and I have never met a nicer group of people! They all went out of there way to help us and made sure every detail was taken care of so that I didn't have to stress over it. I think this is the first time I have ever traveled and not been completely exhausted just from dealing with all the hastles of the airports. Its just really not a place for Riley to be anyway... These pilots go out of there way to give there "free time" to give us this gift, and we truly appreciate it. Without them and many others we never would have been able to get Riley the care we are hoping and praying will save her life. Thank you to everyone out there who gives back...

She was able to complete her mystery testing today which we now know was a heart rate variability test. It's basically where they place a special monitor on you(3 lead), blood pressure cuff, and what looks like the equivalent of a weird pulse ox probe and you stay hooked up for five minutes meanwhile it's all going into a computer with a very special program that records specific things about your parasympathetic and sympathetic nervous system that will later be analyzed by the special "guy" who does the testing. Sounds easy right??? Well you try keeping a 16mo old wild girl still for 5min, and I mean almost completely... Especially a girl who is fascinated with any and all that is medical and we basically gave her new toys to play with. Let me just say we did it, even though it took all morning and we were finished 10min before we had to be down stairs to meet our ride to the airport. Thankfully "the guy" was extremely understanding and very willing to work around our issues and be accommodating. He said he will be spending all day today and tomorrow analyzing everything and will make sure Dr. Fortunato has the numbers on Monday. The neat thing about this test is they have never done it on a child Riley's age as I said yesterday. Come to find out the next to youngest they did was a 4 year old. So, the only bad thing is they have no real reference ranges per se since the normal ranges are based on what an 8 year old would be. It certainly seems like they are trying to establish this testing and I could easily see it becoming a huge thing! It reminds me of an EEG in a way, since it's like I told "the guy" I wish we would have had more time because we could have easily induced her autonomic issues by sleep deprivation and then they could have really gotten some good results. There's always next time...

Unfortunately, I was kind of disappointed we didn't see Dr. Fortunato again before we left. We didn't really see anyone after the test was taken off yesterday. I guess he will be getting with her GI Dr.'s in Orlando to come up with a plan. Which brings me to another infuriating issue... I called to make Riley an appt. with GI for when we get home to discuss some of the issue's we've been having and the trip since she hasn't seen them since May and she's supposed to be seen every 2wks. Come to find out her GI, D. Mehta is gone until Aug. 20, ok I did know that. But, our back up guy who is the ONLY other person I trust the management of her GI issues to is gone too! He wont be back until after July 29... WTH is that! How can they seriously both be out for so long... They said they could go ask if someone else would see her if she needed to be seen sooner but that is pointless to me since I don't want anyone else besides them managing her. So, I guess I'll deal with that issue on Monday. Oh yes and her pediatrician will be out again next week too. I really wish these dr.'s would get how important they are to us and that they can't just up and take off on us. Ohhh well, I'll deal with that on Monday.

We went and got Liam as soon as we got home. He was so happy to see us and we missed him so much. Thank you Denise!!! I love you for loving my wild man so much! He had a great week and was spoiled rotten as always by everyone there. So, now the easy part is over (HaHa) and now we just patiently wait, Or impatiently depending on how you look at it. We have a busy week but hopefully the weekend will be somewhat quiet even though we don't have a nurse due to circumstances beyond her control. Ohh, and that's another fun issues to deal with Monday the fact that they are wanting to drop ALL our nursing hours at the end of the month. I haven't even decided if it's worth fighting over yet or not.... Some times you just get tired of fighting. But I'm just going to enjoy my restful day tomorrow with my cute and wild children and try to be thankful for every single wonderful day I have with them!!!

At the Airport

Waiting to take off... Not sure what's up yet

Being Silly!

We're Home!!!

Thank You to Our Wonderful Pilots Drew & John!

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