It really has been a very long time...

Hello my fellow followers, I bet you thought that I fell off of some cliff and disappeared forever...nah. Just lazy, that's all. I honestly can't believe that over two months have passed since my last update, entirely my fault altogether. What has happened....lemme see. Let's start with the most recent because I think it is beyond awesome news as far as my health is concerned.

I saw my doc at UConn for a follow up, mind you, I haven't seen him in nearly a year. So many changes have occurred since then starting with me walking more and using less and less of my electric wheelchair. Presently, I only use the beast when there is a massive amount of terain to cover or if I just want to joy ride around town on a beautiful day instead of driving the van. I also have been working successfully to wean myself down from the vent. I am no longer 24/7, I can come off for brief periods of two hours, even more depending on what I am doing. My settings are not as high either, I am using more of my own effort to breathe rather than the machine...again, great news. I can seriously say that I have busted my ass to get where I am right now and it shows in the eyes of my doc and anyone else who hasn't seen me in some time.

What my doc is essentially doing is re-evaluating my lung functions the next time I see him to see where I stand as far as my numbers go. If they are good along with decent ABG's (notorious blood gases), then persuing more aggressive vent weaning is a go with the ultimate goal of taking me completely off of the vent and putting me on BiPAP nights. If I can get to nights only as far as a vent, then I will go this route which also means that eventually that crusty, bacteria ridden trach can come out with the assumption that my infections will reduce in number. Of course I will always have some sort of bug growing in there, but I probably won't have so many exacerbations. Can you guys see me doing the Snoopy dance? I am...right now. Tubing and all during the wee hour of two a.m.

I am also starting up pulmonary rehab and am looking forward to this. I have been through two rounds of rehab prior to being vented, all in the same facility and loved the director of it. I went to the hospital today to sign up for it and give my info to her and she just shreiked my name and gave me a huge hug. She always said that I would be back, that I would be the come back kid and truthfully, I am. I feel like my life is just beginning, that I have been in some strange, crazy slumber and am finally waking up from this nightmare. I am able to do things that I haven't been able to do in years such as driving a regular car or walking a fair distance without feeling like dropping dead. I even got to travel to Florida during my kid's spring break to look at USF.

I loved Florida and actually am planning to move there once my daughter graduates high school next year. I have been there before and love the warmth and heat. The cold winters are just getting too hard on me, I thought my joints were going to implode from the pain that I experienced from the extreme frigid temps. I could not get warm to save my life, no matter how many mugs of hot cocoa I chugged down. So I figure, why the hell should I have to suffer? My son is loving the idea of moving south as well, he doesn't mind changing shcools as he hates his current one as it is LOL. My dad also lives part time down there along with my son's grandparents so there will be some familiar faces. I am pretty sure I can handle the warm summers, I just hope a hurricane doesn't land on my home the first summer I am there!

Oh, about the USF tour. My daughter absolutely loves that college and is going to go there if she is accepted to persue engineering. That campus is huge and beautiful. It literally is a city within a city, I don't think any kid going there would find that it is boring or lacking in activites as it seemed that there was something going on all of the time. She will have a great experience if she gets in, I am praying nonstop for her :)

My poor girl also has to have her tonsils out in July. She has had one too many strep infections and snores like a drunk, she has decided that she has had enough of being sick so much. Of course she is nervous as hell as the surgery date comes closer and closer. She has never had anything done to her, so of course it is natural for her to feel this way. One thing that she is looking forward to is no more strep and sleeping like a normal teen as well as eating non stop ice cream after her surgery. Fingers crossed as well as prayers for an uncomplicated surgery and healing please.

I guess there is nothing else really new to report, I will post some pics once I get off of my lazy ass and download my pics from my camera to the computer. I know...simple and shouldn't take long right? Yes, that is true but I am the ultimate procrastinator ever. If I can put it off, I will. Especially if it isn't life altering or an emergency.

Until next time, peace and hugs...Jenn :)