Crazy Weather...

It's strange to me, still, how different the weather can be in this country.

Yesterday, our family back home, received SNOW, while here in FL, we had to turn the A/C on for a little while. UGH!

Crazy!

That's all, just a random thought from me today. Have a great week!

Let Me Tell You About My Man...

Yesterday was our 13th anniversary!! I'm always so excited to celebrate another year of being married to my best friend. I am so blessed to be married to a man who knows how to love unconditionally. I can tell you I am not the easiest person to be married to!!

Marriage is not for the weak at heart. It's not for the non-committal. It's hard. It's painful at times, but I wouldn't change any of it. It seems the trials of life and marriage are what makes us stronger. I know that sounds cliche, but it's the truth. The worst of our marriage is what has made the best of it. Does that make sense? Or maybe John and I only learn the hard way??

I'm thankful to be married to a man who loves the Lord, who loves his wife and children and would die for us without thought. He works so hard to provide a beautiful home for us in a safe neighborhood and all the other things necessary to make life work. He works hard so I can stay home and homeschool our younger babes. That is not something I take for granted. I try to make sure the children know how hard their daddy works to make us happy.

He is extremely supportive of me, and respectful. He likes to surprise me. He loves to get me things he knows I would never spend the money on myself. Like one year when he surprised me with a delivery at the door... of a piano!! Who does that?

This year he came home with a new perfume I wanted, and new jewelry for me. I love him. I am so thankful he's my husband. I love our life together. Even the hard times. Thank you Jesus for my husband, my lover, my best friend.

Happy anniversary honey! Together forever!!!

Quick Update on Josh

Just a quick update on Joshua and his appointment this week with the cardiologist. His pressures appear to be the same. We were hoping for them to be lower.

The doc said he is breathing better and looks better.

We are scheduling a MRI soon to check for blockage in the chest and legs.

Thank you for your prayers and for thinking about my sweet boy.

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.