Guess where we went last weekend.......

Any guesses????

Well, we took A and M to Disney World!! They have never been so we decided it was time to use their Christmas present from Grammie and take them to the place where dreams come true!!!!!!!!!!! Thanks Mom!!!

It was so much fun. It was wonderful to see the awe and excitement through their eyes. They loved the wonder of it all and were the perfect age to go. Tall enough for the "big" roller coasters and still young enough to appreciate the magic of it all. This was taken after riding space mountain!! woo hoo!!!! Our favorite!

It was a wonderful two nights away from everything here at home and just a great time to focus on the younger two. Life has been slightly stressful so it was nice to be able to relax and have a little fun!

One of the best parts of the day at the magic kingdom was heavily pushing Alex to get his picture taken with the princesses!! He was so cute. Doesn't he look thrilled to have his picture taken!?

Again it was very relaxing. This was where John chose to spend most of his time while at the resort....

while the kids were doing this....

and this....

here at the resort pool...

it was absolutely beautiful! It had a waterslide and three other pools. The kids were in heaven. John was severely past due for some relaxation time and I was past due getting to have some FUN family time AWAY from the house.

We gave Joshua the choice to come with us or stay home. He surprisingly chose to stay home and Brandon came over and stayed with him. I just prayed they weren't having their own magic kingdom while we were away!! They did fine and I was very thankful for Brandon staying with Josh and making sure he got picked up and taken where he needed to go.

Anyway, I'll spare you the rest of the pictures! If you haven't been I hope you get the change to go to Disney World sometime. It really is a magical place!!! We can't wait to go back!

Good news! With a twist...

Sometimes you just wonder whether insurance is really worth it or not. Especially with the amount of paperwork required just to apply. Have I told you I despise paperwork??? The repetitiveness of it at doctors offices seems to be a bit much too. Or is it just me?

We've had a hard time getting into see specialists with the type of insurance we have for the kids. I'm thankful for it, it's been good so far but with that said....

We found out yesterday that Joshua qualifies and is approved for a program offered through the University of Florida. It's an insurance program for children with chronic or terminal illnesses. They assign a nurse care coordinator to us who will help get all the referrals, appointments, etc. lined up for us!!! HALLELUJAH!!!!! Thank you Jesus!! This made all the paperwork worth it!!

I went to pick up three of his prescriptions today and it cost me $0.00. Yep, you read that right... NOTHING! The little paperwork that comes from Walgreen's as your receipt said "your insurance saved you $413.97. WOWEE!! I'm so thankful for this new insurance. Yes, his old insurance paid for most of the bill for any medicines but this is just wonderful!

So... you may be asking "what's the twist?"

Well.... two of his doctors, who remember we waited for a month to get into see.... well, they are not on this new insurance plan. UGH!!!!!!!!!!!!!!!!!!!!!!!!!!! I wanted to throw up. I don't want to start all over with new doctors. Come on. That is not fun. However, we do have a fantastic lady who works at our primary care doctors office and she has gone above and beyond what she probably needs to and has gotten us approval for our appointment tomorrow with one of the docs who is not on the plan. Yipppeeee!!!

So... please pray we can get into see the other doc who is not on the plan. He's the main doc we want to see right now, the pulmonologist. Thank God our cardiologist IS on the plan so that won't change. We see him next week for a repeat echo and to discuss the right heart cath.

I know I keep saying it but thank you for your prayers and words of encouragement and comfort.

I hope you're having a good day and you are spending some of it enjoying life! Don't take it for granted. Especially being able to get a good deep breath.

Sleep Study Results

Well... we're still waiting to hear from our doctor on what they think, but the sleep study came back negative for obstructive sleep apnea. He does have mild to moderate snoring. We're not sure we agree with this but we're going with it for now. We think his doctors will order more testing to further rule this out.

It doesn't make sense since his hemoglobin is still so high. We were sure he was desaturating at night which would confirm the high hemoglobin.

We have a follow up ENT appointment this week and back to the cardiologist next week to discuss scheduling the right heart cath and also do a follow up echo.

Josh thinks the meds are helping him breathe better in the evening so we're curious to see if the pressures are down in the right ventricle.

Thanks again for praying for us.

Joshua Sleep Study

Joshua had his sleep study Wednesday night. We have not spoken with the doctor yet and hope to get more info next week. We have more appointments set up and I will let you know more when there is something to tell. I don't know how they expect you to sleep with all that hooked up to you! It was a LOT.

I am trying my best to keep this blog up to date when I get information. I do not post everything that we are doing, or all things we are dealing with but please know I try to get the basics of what's going on out here.

Thanks again for your prayers, calls, hugs, cards, etc.

Joshua's Pulmonologist Appointment

Today was a big day for us as far as feeling like we are finally headed in the right direction. Our doctors have been great as far as building up a file of tests and procedures that need to be done, but today was the day to finally have the big bright light shine on it all. At least for me. It's been a lot for my NON medical brain to take in and comprehend. I'm thankful John was able to be there with us today.

We finally saw the pulmonologist today. He was quite impressed with Joshua's case and the battery of tests we've already completed. That helped him to speed things up I believe. Thank God my sister is here pushing and helping me SO much.

So... he added another diagnosis to the bunch. As well as the pulmonary hypertension and chronic obstructive asthma, he has added COPD, Chronic Obstructive Pulmonary Disease. It's all kind of the same thing but then again it's not. He also confirmed Joshua's lungs are only working between 40-50% and that they look like the lungs of a 60 year old man who has smoked for 40 years. He said the damage that has been done cannot be repaired but the function of the lungs can be improved.

As expected, he added medications to be taken daily. They are Advair, Singulair, and Pro-Air, as well as a nasal spray. When he listed them orally to us, Joshua said "wow, sounds like I'm gettin' a lot of air." :-)

He wants to do a right heart cath and ordered additional lab work (some which were a little alarming but he says not to be worried), as well as encouraging us to get the sleep study completed, which just happened to be our afternoon appointment today.

So.. we went to the sleep clinic this afternoon and Joshua was evaluated for a sleep study. The doctor there firmly believes he does have sleep apnea and we've scheduled the study to be done next Wednesday night. He also mentioned him having his tonsils removed and possible sleeping with a CPAP machine. So it looks like there is much more to come. I'm not at ALL wanting to have the tonsils removed so we'll have to really get more info on this one.

Thank you for praying for our sweet son. He is such a great kid and we love him so much. Please pray for his peace of mind today. He was on the phone in the car with his best friend and I could hear apprehension and concern in his voice telling his friend about it. Of course, he still has an awesome outlook on it all but I'm not sure he totally understands what this means long term. We are all still figuring that out. I really hope God will shine through us as we continue on this very uncomfortable journey.

Joshua - Update 4

We had Joshua's follow up with the cardiologist Thursday. The holter monitor was normal. The labs still show the elevated hemoglobin levels and his oxygen levels are low.

So... there's nothing more to do with this doc until after we see the pulmonologist, which is Friday the 20th in the morning. We are also seeing the sleep study doc that afternoon for evaluation.

It's raining today and rather dreary outside. Makes for a tired sleepy afternoon.

Hug your family tight!!

Joshua - Update 3

Well... we saw the ENT yesterday and they ordered a sleep study to be done.

And FINALLY........we have scheduled the appointment with the pulmonologist!!! WOO HOO!!!

But... it's not until Feb 20, but at least it's on the books.

I spent the day with my sister going over paperwork and applications online for future need for Josh. We'll see how all that goes. I just despise the mumbo jumbo of medical paperwork. Thank God my sister get's it! Thanks Heather!!!

I hope you all are having a warm, wonderful day!