Wednesday, October 27, 2010

Family Update

Can it really be that fall actually began in October in Florida?? I have been so excited that the temps have finally dropped and it's been actually COOL already! Usually we're still sweating and running the A/C in October. I hope these fabulous temps stay here. I so enjoy the cool crisp air and being able to wear my jeans and long sleeves!! We're still running the A/C here and there but nothing like we usually do this time of year!

We are in the full swing of school and really enjoying it. I've picked up a new curriculum this year for our Language Arts called Total Language Plus. It's been great for us and the kids really love it! Right now we are reading Caddie Woodlawn. It's a cute story about a girl who is allowed to run around outside and play with her brothers instead of being trained to be a "lady" and learn alongside her mother and sisters indoors. It appeals to both my boy and girl so it works well!

Joshua is still plugging along at school. It's been hard for me to not really "know" how he's doing or having dialogue with any of his teachers. He says he's doing fine. I just hope he's remembering everything. He seems to enjoy it so far. We're still trying to work out transportation for him. It's been hard for him having to rely on his parents or Aunt for a ride. He is learning how to ride his bike 2 miles to the bus stop and take the city bus where he wants to go. I'll be honest... it makes me a NERVOUS WRECK! I don't want to let him do this but I know he needs to do it for himself so off he goes! Wow... it's hard letting them go!!! Joshua trusts everyone and takes it all at face value. I just don't want him getting taken advantage of or hurt. The doctors have said they want to see what he can do physically. So far, he can ride his bike much farther than he can walk.

Alex and Micayla are doing great. They are both playing the piano and Alex is singing in a band and playing soccer. He is quite the soccer player. He loves it and has so much passion for it! He plays midfield and keeper. He is a great goalie but has been enjoying playing out on the field too! He's not afraid to go after the ball and get right in there! Micayla has become quite the pianist and will be playing in February for Federation. I can't wait!! They are both doing great with school and I love it that if they don't get an A on everything, they get very upset! Hope that continues!!!

John started a new job 3 months ago. We are thankful for the job but it's been an adjustment for him. He is walking into a company that needs to make a lot of changes with their employees. The best way to describe it would be (in his words), the lunatics are running the asylum. It amazes him that a grown man can be so disrespectful and lazy and still expect to be paid for it! We'll see how it goes. He will be taking another class and test for his fourth certification in the disaster business. Pray he does well!!

I've been busy teaching my children, being their taxi, teaching piano and violin still, and trying to do the little things I love to do. Church, friends, crochet, baking and quilting. It's crazy but I wouldn't change it.

Please hug your family tight! If you haven't singed up to be a donor yet, please do that too!! Go to and sign up! It's quick and easy! We thank you!!


Wednesday, October 20, 2010

Update on UF Visit

After many hours of waiting, we had our appointments with Joshua's cardiologist and pulmonologist. We usually don't have to wait hours like we did this time. We understand it happens but it sure is no fun. Although, we have a great social worker who gave us meal vouchers which paid for lunch at Subway downstairs while we were waiting for the doctors!! Thanks Mary!!

The main topic this visit was compliance. Joshua has to decide whether or not he wants to continue treatment. That may sound shocking to you but it is where we are right now. I/We cannot want it for him. He has to want it for himself! He is frustrated with taking meds and all of it really. There are days when I wonder if he's just given up. The medicine is very, very, very expensive and if he's not going to take it then we don't need to be getting it. Thank God his insurance pays for it but it's still not right to get it and not take it.

We've had some long talks. Basically, I think he has gotten hung up on the word TERMINAL. Sure, I was hung up on it too for a while. That's a tough pill to swallow. But... I've joined several PH support groups and I really honestly feel like he could live well into his 40's or 50's IF HE TAKES HIS MEDICINE. We're all going to die and none of us know when that will happen so we need to live life to the fullest!!

So... we're on a new plan in our house to help Joshua start gaining more independence and forming a plan for himself.

Please pray this goes well and he can see the positives for this medical regimen.

Hope you're all enjoying the lovely fall weather! It's actually cooling down here a little too, finally!!

Love ya!

Wednesday, October 6, 2010

UF Tomorrow

Tomorrow morning we leave bright and early for our first UF trip in a few months. The last two appointments have been here in Jacksonville but this month we head back down to Gainesville. He has his normal appointment which includes his 6 minute walk, labs, echo, ekg and then we meet with his cardiologist. After that we will see his pulmonologist. We haven't seen her in several months so I'm happy we'll be doing that this trip. It's an all day affair but I'm glad we'll get it all done in one day versus two or three when we're in Jax.

Although I think he seems more tired, Joshua is doing okay. He hasn't been taking his medicine like he needs to and it's driving me crazy. We've finally gotten him to what seems like the easiest regimen. All of his pills are down to once a day (we changed the meds in order to have the dosage only be one time a day instead of two or three times. It's a lot of paperwork and red tape to get him approved for the new meds.) He still takes his inhaled medicine (the micro nebulized med) four times a day but that's it.

I am trying to transition him to being responsible for his medical care and it's really really hard. At some point he has to decide he's going to take his medical needs seriously. He wants to wait until he FEELS sick. I've told him, again, that if we wait until then, we cannot reverse the damage done. We caught this early (as far as the doctors think), so he isn't feeling much different than he always has, but he's also been on meds for over a year. He doesn't seem to understand that if he stops taking the meds, he will get worse and then he really won't like what he'll need to do if he has a central line, or worse.

So.... please pray for us tomorrow if you think about it. I am hoping to have a serious heart to heart with the doctors tomorrow about all of this. It's always hard for me to do that because then they get in Josh's face about the seriousness of it, (which I know he needs), but then that upsets him. UGH!! Please pray they can stress all of it again, (repetition is necessary here), but that he receives it well.

I'm still praying God completely delivers him from all of this. I am praying for a complete miraculous healing. I know Joshua would use it to bring Him glory!!

I hope you're enjoying your fall weather, wherever you are!!!