Friday, July 30, 2010

Sleep study

We are at a sleep lab just blocks from The Alamo. Josh is watching Transformers 2 while his nurse/tech hooks probes up to his head. We hope to learn if his vent settings and trach size and type are all still adequate. This is the first formal sleep study Josh has had since he had diaphragmatic pacemakers implanted.

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Wednesday, July 28, 2010

Summer Trips, Back to College & more

UPDATE ON JOSHUA

We have been trying to find things to do to get Josh out and about this summer (other than in the hospital). We took him last weekend to the state capitol in Austin. He really enjoyed seeing it and studied some more about it on the computer when we got home. Here are some pictures from the Capitol.













We also got him out over the 4th of July weekend to Lake Travis near Austin. We did a little fishing and watched fireworks on our drive back home. We got to see several displays that way - which worked out better than if we'd actually planned it. We took several pictures at the lake that turned out just beautifully.










Josh seems to be doing much better after being home from the hospital. We still don't know what caused his problems with his breathing even on the ventilator.

He was supposed to have a sleep study done about the time we got out of the hospital, but his lung doctor wanted us to wait until Josh was feeling better to do it. So, we scheduled it for August, before school started. Then, I got a call that they had a cancellation and we could go in this Friday night for the study. That is great news, because we'd like to get it behind us as soon as possible.

Then, Josh is set to go see the heart doctor again next week.

We also have some exciting news... Josh may soon be able to test out something called Neuro bio feedback. It is an alternative medicine therapy that encourages the brain to restore or re-establish connections, to make it work more effectively. We have found a doctor in San Antonio interested in giving it a try on Josh. His company is busy trying to obtain funding through a grant for a study. They are also pursuing some private fund raising for the research. We are very hopeful that this could be a therapy that could alleviate or at least minimize some of Josh's symptoms - including body temperature and hydration control, producing hormones and even breathing.

And we have been approached about another possible tv documentary project. I'll share more about it later as details become available.

Meanwhile, Josh is excited about the beginning of another school year because he will be in junior high. It'll be a new campus for him and changing classes. He is planning to take wood shop as an elective.

And his nurses are looking forward to his birthday coming up. They are making plans to help come up with food and supplies to throw him a big bash to celebrate his turning 14. What does Josh want for his birthday this year? A laptop computer of his own. He is sure he'll need it for schoolwork. He is not expecting anyone to buy it for him, though. He has been busy trying to earn the money for it by baking and selling cookies. If you want some, let us know. He makes all kinds out of cake mixes. His last batch was lemon flavored with dried cranberries as the stir-in. They turned out rather well. But he has made chocolate, chocolate chip and strawberry before.

Speaking of school.......

BACK TO COLLEGE
You would be amazed at how difficult it has been for me to try and get back into school.

Why back to school now????
It has been fifteen years since I last took a college class. Back then, I was working toward a degree in journalism. Once I got a full time job in TV news, though, I decided to stop taking classes and devote all my time to my job and family. But since Josh was diagnosed with a rare disorder that left him with a tracheostomy and ventilator, it became necessary for me to learn alot about respiratory care. So, I decided now that I have so much real life experience with the subject, it would be good to go back to school to get my degree/certification make it my career.

The plan:
I began working on getting back into school back in the spring. I had thought I'd take any pre-requisite classes over the summer and start the respiratory program at St. Philip's College this fall. It's a 2 year program, so I figured I could be done and working as a respiratory therapist by the summer of 2012. But things have not really worked out the way I'd hoped.

The troubles:
1. Accuplacer Test
Because I had been out of school so long, I needed to take The Accuplacer Test to determine if I could go into regular college level courses or needed refresher courses first. My scores indicated I needed to either take refresher math and English classes or study some more and re-take the Accuplacer again. I decided it was worth trying the test again. That paid off, because my re-take scores were much better and I don't have to take any refresher courses. Those would have been costly and time consuming.

2. HOLDS
I requested my transcripts from my past schools months ago. But when I first started trying to register for classes, I learned they had not received those from one of the schools - one that showed I had taken orientation before. Because they needed all the transcripts in to see what classes, etc. I had previously taken, they put a "hold" on my account - actually two holds: one for transcripts and the other for orientation. I had to re-request the transcripts from the one college and wait for it to arrive at St. Philips. Even after it arrived, the holds were not automatically removed. I had to physically go down and stand in lines to talk to various departments to get them removed from my account.

3. New Computer System
St. Philip's College just switched over to a new system called ACES which you have to use to register for classes. And it apparently still has bugs that have wreacked havoc on me. Those holds I talked about - once the were removed from my account were still showing up on my ACES page. And it took a week or more to get the proper people to take them off.

Oh, and I didn't mention that I had trouble first just getting onto the ACES page because it would not allow me to create and use a password the way the instructions read. I found this out just before the July 4 long weekend and had to wait for them to come back to work to try and reach somebody to fix that problem.

Once I had registered for my classes, I wanted to check to see how much financial assistance I would have. I signed up for financial aid back in early May and got a report saying I qualified for up to $2100 in a pell grant for this school year. I only registered for 7 hours this semester, so I thought it should cover that. Well, I had no place on my ACES page to access my financial aid information. So, again I was calling, emailing and finally going in person to try and find someone who could fix that problem.

MONEY
Josh and I went to St Philips this week to try and find out about the financial aid issue. We learned for some reason the college did not get the information from the Department of Education like they should have. They will have to re-request it from them. And because they will have to re-request it this way, I can expect they will definitely audit my form. That is okay, because I am prepared. I even had my income tax form with me for the financial aid folks to make copies of while we were there.

But the rep looked up to see how much I could expect the grant to cover, and it is maybe half what it will cost for tuition, fees and books - not counting the gas money to get back and forth to class three times a week! And I have no money in our budget to spend on going back to school. It is too late to even apply for any scholarships I know about. So, I will have to go in on the one day a week they talk to folks about special circumstance financing and plead my case. If that doesn't work, I will have to try and take out a student loan. But even if I get it, I won't see any funds until long after my tuition and fees will be due and after I will need to be using my books.

I believe I am supposed to go back to school and get my degree, but I am certainly hitting road blocks every step of the way. So keep me in your prayers as I enter this new phase of my life. I'd appreciate it.

Oh, I am still working at a daycare less than a mile from our home. I love getting to take care of and play with the babies (in my room, they are all under 2 years old). I just wish I could earn enough money to pay for everything we need by doing this. Oh well. Every little bit helps.

And the most important baby in my life.......

GRANDBABY NEWS



Logan is now 6 months old. He is doing quite well. He sits up with assistance and eats baby food fruits and cereal. He is such a good baby - very alert and happy most of the time. We are fortunate to get to see him pretty often. We also see his parents, too :) They are looking forward to his dad finishing up schooling for air conditioning/heating. And his mom (Steff) is looking for a better job to help bring in more money, too.

Discovery Documentary - Life or Death : Battling to Breathe

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