Thursday, August 27, 2009

Back from UF

Our trip to Gainesville this month went well. We went down yesterday afternoon so we could get checked into the hotel and then off for Joshua's sleep study. Our doctors at UF were not convinced the last sleep study was accurate so they wanted to do their own in Gainesville. Here are some lovely pics...
Joshua getting hooked up...

Joshua with Debbie... she's responsible for his new look ... she was great to work with and very sweet. I didn't like leaving him there overnight by himself but I knew he was good hands with her... (I know, I know... he's old enough and all but still....)

All done... It's WIRE MAN!!!!!

We haven't gotten the final report from the doctor yet but it looks like he DOES have sleep apnea after all. They measured him for a CPAP machine but it's the one that looks like a pig snout, fitting just over the nose. We won't make any jokes when he wears it... ahem ... we would never do that to our child!!!

This morning we went to the hospital for our clinic day. Same tests... 6 minute walk, labs, EKG and ECHO. There is still no change with the meds. They are going to increase the dose on one medication and see us back next month. They also discussed using oxygen at night with the cpap machine. We'll see what the final results show.

After we go back next month, we may be able to start going every three months. I would love that but I'm not getting my hopes up either. It seems like just when I think it's all smooth sailing, the wind picks up and we get hit with some big waves!

We are also going to meet a new doctor next month - the pulmonologist. We were really hoping to do that this month but were not able to get in with the specific doctor they are wanting Joshua to see. I'm ready to see this doctor to find out if he ever had asthma of if it's been PAH all along. They probably won't be able to answer that but you know I'm gonna ask!

You all consider yourselves hugged and thank you for your prayers for Joshua. God has been showing up lately and I'll tell you more about that later.

Monday, August 24, 2009

Senior Year, UF Again, and Prayers Please

Can you believe it? Joshua started his senior year today. He has four classes to complete and he's finished. He is out of school by 11:00am. Then he comes home and works on his on-line math class. We can't wait until that is finished!

WOO HOO!!!!!!!!!!!!!!!!!!!!!!!!!!! I can't wait to see him cross that stage and receive his diploma. He can't either. I will be the proudest momma there!!!!! :-)

We also go to Gainseville this week. We will be there Wednesday and Thursday. He will be having a sleep study done Wednesday night and then our normal clinic day Thursday. We are still waiting to get to meet with the pulmonologist. Looks like we won't get to see them until next month.

Also, please be praying for Joshua's grandma Leslie and her family. Her sister's husband Dale has had some serious problems following brain surgery and they are not sure he will be able to wake up and communicate again. Please keep Leslie, John, Sharon and Dale and the rest of their family in your prayers.

Consider yourselves hugged and take care of each other!!!

Wednesday, August 19, 2009

Family Travels

It's been a crazy few weeks. First of all... a good friend of ours back in Missouri whom we've known since we started dating passed away. His name was Shad. He was a funny, caring and crazy guy. He was in our wedding. Shad lived his life always wanting to have fun and wanting everyone around him to have fun too. Even though months or years would pass and we wouldn't talk and see each other, it was always as though no time had passed. Would you please keep his family in your prayers, his wife Dee and their kids, Broc and Kylie. Thank you.

We were hoping to make it home to the funeral. All we needed was one of John's job to finish and we could leave town. John has also been working crazy hours, 4pm to 6am, 6 days a week, so he was seriously needing to take some time off work. He never takes time off work just for fun. The kids were really missing their dad too.

It took two days longer than he had hoped for so we were not able to make it to Missouri.

John still needed the time off so we decided to go surprise some friends in Tennessee. It was so fun to surprise them. We called Anthony and told him we were three hours from home and to NOT tell Lisa. It was great fun! I love surprising people! We had a great time catching up with the Gatto's and seeing where they live and getting to see Lisa 9 months pregnant! Can't wait to see that healthy baby girl soon!

When we left, John was all about taking his time and not being rushed. He decided he wanted to take the southern route home and go visit a friend of ours in Louisiana. Marshall has been a dear friend to John through some of our harder years of life. It was great to catch up with 4 of the kids, he has seven of them, and visit his church as well. It was a fun time, although quick. I wanted to bundle up his baby and bring her home with me!!! So sweet!!!

After leaving, we were coming across I-10 and John pulls off at Mobile, AL. Next thing you know he's pulling into ....

It is Battleship Memorial Park in Mobile, AL. It houses the USS Alabama and offers tours of the battleship as well as an aircraft hanger and the USS Drum Submarine. It was lots of fun!!

Here are some pics of the battleship tour...

The family outside the ship...

On the deck of the ship... FIRE!!!! Those are some big guns!

Gunners mate???

Next came the crews gallery.... I can't imagine being that crowded and having to sleep in such a small bed!!!!!

Then we went ALL THE WAY DOWN to the boiler room. It was HOT!!!!! This is where John's Grandpa Rudy worked when he served on the USS New York. I can't imagine sweating and smelling like diesel fuel all day! Yuck! (The picture is dark... cell phone, and no light.)

Then we traveled ALL THE WAY UP to the TOP! It was a LOT of ladders and NO A/C! It was a beautiful view of the gulf coast. We could see the remnants of Hurricane Claudette rolling in.

We had a great time and it was so nice to get away. It was even better to be able to turn John's cell phone off!!

I can't wait til we can take another vacation. It was wonderful!

A pic of Captain Micayla~~~~ signing off!

Monday, August 10, 2009

Joshua and John

Well, Joshua left this weekend to go to Missouri for a week. He's traveling with Grandpa John so I know there will be some great political discussions. Maybe by the end of the trip, they will have all the world's problems solved and Joshua will know exactly what is wrong with our government!!! ha ha Love you grandpa John!!!

John has been working some crazy hours lately. They had a job where they can only work nights when the building is closed. He's been working 6pm-6am and sometimes even longer. It's been crazy and we're all starting to get our nights and days swapped. That's bad!

Also, update on the shoulder... John will be having shoulder surgery in the next month or so to repair the labral tear.

This is not going to be fun... for any of us! His shoulder will be completely immobile for 2 weeks. Then he will have approximately 20 weeks of physical therapy. John doesn't know how to work "gently" so it should be rather interesting. Please be praying for his recovery. That it will go quickly.

Thanks for checking in on us. We sure appreciate all the words, comments, emails, and calls from you!!


Saturday, August 1, 2009

UF and Perspective

So we had our clinic day at UF this week.

We started in the Pulmonary Function Lab getting his PFT done. It was difficult for him at times. Of course, being the wonderful mom I am, I stood by him and... took pictures! He loves it. I thought you'd want to see it too...
Starting out... with the nose clip on... (he's in a chamber that tests his lung functions)...

Blow blow blow blow... neck veins popping out.... slapping the leg cause he's gonna fall over if she doesn't let him stop...

He was worn out... This tests really challenge his lungs....

It's kind of a strange feeling. Each time we go I hope the doctors are going to tell us the meds are working, or even better yet I want to hear them say it's all better and we don't have to come back. But they aren't saying that. It's a big let down. I'm trying to stay positive and hopeful but at times I don't feel that way. Neither does Joshua.

They said there is still no improvement with the medication. They are adding another medication to the mix. This one will be three times a day. Thank God for phone alarms!

Joshua asked several questions relating to longevity. He's wanting someone to give him a definite answer and at the same time knows no one can do that.

He's getting frustrated with it all and trying to deal with the day to day thoughts and emotions. He told the doctors he's tired of them telling him what he can't do. What it really boils down to is that none of us want to be told we can't do something because that "something" becomes even more desirable. It's not things he even does often. Just knowing you CAN'T, makes you want to even more.

So, we're trying to focus on the positives. Trying to find some new things to do. I won't lie, it's hard. It's frustrating. I want him to be considered FINE. I want him to NOT be considered SICK. He doesn't LOOK sick. He doesn't FEEL sick. Although, he is sick of people asking him how he feels. But he understands.

At times, going to the University of Florida does put some perspective on things for me. As we wait in the waiting rooms, I watch the other parents bringing in their children. Some are just there for routine office well checks. But then there are the one's that are there who have more serious issues. I watched a dad push his very young daughter in, in her wheelchair. She only had one leg and was on a vent. She had to wait for him to look at her to get his attention since he was just out of her reach. Then I look at Joshua and think "there's no way he's sick."

We also had the wonderful privilege of meeting a fantastic young girl named Cat (her nickname) and her Nana. Cat is only 8 years old. She has familial pulmonary hypertension. (Her mom died 5 years ago from the same disease.) She was the cutest little girl, so happy and all smiles. Even though you couldn't see her smile, you knew it was there. It was behind her hospital mask.

See, Cat had a heart-lung transplant the end of March. She lived at the hospital almost an entire year before her transplant. She has such a great personality. She was such a breath of fresh air. She didn't speak like she was 8, she spoke like she was 28. She was very knowledgeable about her disease, her medications, her tests she was waiting to have done. They were the same one's Joshua was having done. The PFT, the 6 minute walk, labs, EKG, ECHO. Then we were both seeing the same doctor over in the clinic.

I'm so grateful I got to meet Cat and her Nana. Her Nana shared some good advice with me and it was just nice to talk to someone who had already walked this scary, winding road. It was nice to discuss treatment and medications with someone who has already taken them and knew what I was talking about who didn't have an MD behind their name.

Don't get me wrong... I love our doctors but it's nice to talk to someone who is living with it. I don't know if Joshua will ever be a candidate for a transplant or if he'll ever need one. I hope not. But seeing Cat was such a great boost for me. Thanks Cat.

And by the way... if you haven't signed up to be an organ donor, please do so. Please talk to your family about it. Tell them what you'd like. Then do it. You can sign the back of your drivers license but you also must tell someone close to you as well. Or go to to sign up.

I'm sure Cat's family is immensely grateful (an understatement, I'm sure) that someone made the heart wrenching decision to allow their child to donate life to someone else. Thank God for her donor and their family and their selfless gift they gave. If you're not already, please consider becoming an organ donor today.

The end.