Friday, November 20, 2009

Homeschooling sure makes life interesting!!!

One day last week while we were doing our math, Alex got up to let the dog out. It was another beautiful fall day here. Sunny, warm and a slight breeze.

Alex walked outside noticing something down by the back fence. It went a little like this:

Alex: "Mom, come here!!!"
Me: "Alex, get in here, you need to get this math finished."
Alex: "Mom, there's a bird in the yard and it's hurt." (He tells his sister to get a box.)
Me: "Alex, leave it alone! Don't touch it! Get in here." (I walk to the backdoor, really not interested in this bird and just knowing Alex is trying to blow off school.)
Alex: "Mom... please come here. It's alive! We have to do something!!"
Me: (realizing math is losing it's luster) "Alex, don't touch it."

Meanwhile, Micayla is coming out with a shoebox with holes punched in the top.

Alex: "Mom, I don't think it's hurt, I just think it's stuck."

OH GREAT. Now all math is out of the minds of my babes and they are focusing on this bird. Alex pulls the grass weeds around the bird to get it loose.

Alex: "Mom, it's covered in burrs." (The soft, flat one's that stick to you.)

We examine the bird. He's in the box. The kids get out their winter gloves so they can hold it and start taking off the burrs. (There's one reason we need gloves in Florida!!)

So I realize we now have a bird and I don't want a bird. What are we going to do with this bird??

So I get on Google and look up wildlife rescue places in our zip code. I didn't want just a critter control person. I found an animal hospital, very close to the house. They are a wildlife drop off. Who knew???

So... we ended up taking the bird, who the kids named Lucky, to the vet. They cleaned it up and sent it off to a bird rescue who, if possible, will release it back out in the area it was found. Whew!

We did find out it's a Great Crested Fly Catcher. We did research on it when we came home so the school day wasn't a complete loss was it???

And just because I know you want to see...

UF Results

Well... as Josh said... "today was a long day Mom."

I concur. He actually fell asleep on the exam table (above) while I was speaking with the doctor. She said it's not normal for him to be able to fall asleep that quickly and in the middle of the day, while we're talking. That just confirms he's not getting good sleep. I'm glad she could see that while we were there since we have noticed him being more tired lately as well.

It was a long day. We had our normal appointments in Gainesville today as well as meeting the pulmonologist again today.

First with the cardiologist... there is still no improvement with the meds. They aren't saying there is progression of the disease either so that is good?? They are going to increase one of his meds to the maximum dose. They are really hoping they can lower the pulmonary pressures. Dr. A also wants to add another medicine, Ventavis. Their website says:

"Ventavis is delivered right to the lungs—the site of the disease. Ventavis is the only inhaled PAH therapy that can be given alone to help patients treat PAH symptoms to walk farther and breathe easier with ordinary physical activities. It can also be safely used with many other drugs. Ventavis is approved for the treatment of NYHA Class III or IV pulmonary arterial hypertension (PAH).

In clinical studies, Ventavis has been shown to decrease pulmonary arterial hypertension signs including lowering high blood pressure and resistance in the pulmonary artery (main blood vessel) leading to the lungs to allow the heart to pump more efficiently."

The Ventavis is also supposed to help decrease the worsening of PAH symptoms. The hardest part of this new medicine will be that it's supposed to be taken between 9-11 times a day. YEP. You read that right. The main concern of course is compliance. We have a hard enough time doing three-four times a day each day. I just can't imagine this 9-11 times. WOW. It is also a nebulized medicine so it's a little different than the normal inhalers he's used. The doctor did tell us if we can at least get 6 in that will be good. We're going to try our best. A nurse will come out and show us exactly how to use this medicine and it's nebulizer.

Another issue that was brought up is that Joshua is still losing weight. Although this month he only lost half a pound, compared to two pounds last month. The half pound is not horrible but it's the wrong direction. I was disappointed because I really thought he was going to gain this month since we really made an effort to get more down him. We spoke at length with both doctors about different ways we can try to get him to eat more calories. It is SO extremely opposite of how the rest of us need to eat. Ugh.

Now... about the tonsils. It is looking like both docs are going to be on board with trying CPAP for now and hoping the PAH will improve enough to make him a better surgical candidate. For now, he will keep his tonsils until we get his lungs in better shape.

Good news is we don't have to go back to UF until January unless there are any complications with the new meds. YAY!!!!

That's about it for now. We hope all of you have a great weekend!!!!

Monday, November 16, 2009

UF This Week

This week we go back to UF for Joshua's monthly appointment. We most likely will be discussing possible surgery. I really don't think his cardiologist will allow him to have surgery but we'll find out this week.

Please say a prayer for me as I will be taking him by myself this month. My sister has been to EVERY appointment with me through all of this. She's my comfort and security blanket, an extra set of ears and eyes. I know I can do it alone, it's just better with her.

Thanks for all your prayers!