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!

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!!

Blessings!!

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)...

Ready.....

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....

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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.

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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 http://www.donatelife.net/ 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.

We're baaaacckkk!!!!

We are still alive. Really.

Barely.

Many of you have let me know that I haven't updated in a while. Here's why.

My family moved into my sisters house for 12 days to take care of our grandpa while my sister and her family were on vacation in Missouri. He lives with her and requires light nursing care and just someone to check on him periodically, get his meals to him, and put him to bed.

It was A LOT for me. I'm such a wimp. I just don't do bodily fluids well. Of any kind, from anything or anyone. Between Grandpa, her three boys, four cats and a dog, she's always said her life is one big bodily fluid and she was right. I was not made to be a nurse, I'm sure of it.

Pray for her.

I don't know how she does it! And she even had home health care come every morning to get him up, clean him up, do his meds, and straighten his place up... just for me. I love her.

Anyway, it was an interesting 12 days. Lots of time for pondering and perspective.

Even more so than usual, I am forever grateful for Joshua. He was a HUGE help to me with Grandpa. He loves just sitting up there with him. Sometimes they talk. Sometimes they just sit. And watch TV. LOTS of TV.

(Just how many hours of Fox News or Deal or No Deal can one watch, really?)


Joshua and Grandpa have an unusual relationship. They really do love each other. Grandpa thinks Joshua is just wonderful. I think it's because Josh is the one who spends the most time with him just sitting with him. Joshua laughs at his jokes. These are the same jokes we all have heard as long as we can remember. But Joshua still laughs. He's great like that.

So, with all that being said... Joshua was able to do something I'm not sure anyone else would've been able to do.

He got Grandpa to do this... (sorry for the picture quality. It's from my cell phone and there are too many windows!)

And then he even did this...


Joshua would push him in his wheelchair around the pool table. Sometimes he would shoot sitting down, several other times he would stand up! That is big for Grandpa. He almost beat Joshua but Josh won!

We did enjoy our stay at her house for the most part. We really missed our own beds, and of course Mick! Remember him???

But we sure did enjoy this...

We did take full advantage of their pool and had friends over to swim while we were there.

Peter even brought his guitar to entertain us!! Fun times with friends!

We had a fish fry with the fish that John and Chad caught while deep sea fishing. I would post pictures but for some reason, the men don't think about taking pictures while they are bringing in their big catch!!!

We had shark, kobia, sea bass, and snapper.

It was yummy!!

I guess this post is plenty long now. I just wanted to let you all in on what we've been doing lately. More to come.

News this week...

Joshua started his full dose of meds last night. They came a day earlier than expected.

The only bad thing about that was we were all outside, Mick included, and he about attacked the Fed-Ex lady. She jumped back in her truck and shut the door. I about died! Our fat, lazy dog NEVER does that! He charged her like he was gonna eat her up. Anyone who knows Mick knows that he is just about comatose most of the time. See how much he was helping me paint Joshua's room ...


I was really embarrassed for her and just hope she doesn't red-flag our address and then not deliver to us anymore!

Here is another favorite shot of Mick, just for fun... Does he really look like a mean, vicious, attack dog??? I didn't think so!


So after she left, we put Joshua's meds together for the week. We'll be looking for any additional side affects from this drug. He's had a few headaches and some dizziness up to this point.

Other than that we're all doing well.

Although, I have forgotten to let you all know that I failed my M.D. test. ;-)

John does not have a rotator cuff tear. It's a labral tear. The shoulder joint has a cuff of cartilage called a labrum that forms a cup for the end of the humerus to move in. That cartilage is what he's torn.

He started physical therapy last week in hopes that it will be enough and he can avoid needing surgery. Only time will tell.

Also, please keep my biological dad Harry in your prayers. He had a stroke last weekend. Please pray for him. He is not able to swallow or walk at this time.

Thanks again for your prayers and calls and words of comfort for our family!

First Clinic Day

We left the house at 7am and got home at 6pm. Long day.

It appears by the results of the ECHO that there is no improvement with the meds at this time. We've been 3 weeks at half dose.

So the plan is to go ahead with the full dose of Tracleer starting with the next delivery (which should arrive next week) and then return to UF next month for our second clinic day.

Joshua asked several questions. He wasn't really happy with the answers but it's for his best interest. Right now he is not allowed to travel by airplane, be in high altitudes, or ride roller coasters. All these were questions he asked.

He is allowed to be out and about walking or swimming, just not alone. He can ride his bike if he's being cautious and listening to his body. He cannot exert himself.

He wasn't so sad to hear that he still cannot be mowing the yard! Alex on the other hand, isn't so excited to hear that news.

So we wait another month to see if the meds are going to positively affect his pulmonary pressures.

Thank you for your prayers. Please continue to pray for us to accept whatever God is doing with Joshua through all this.

Gainesville Tomorrow

That about says it all.

Tomorrow is our first clinic day in Gainesville. We will leave early in the morning to get kids delivered and then off to the swamp. We'll be there all day.

The day will consist of a 6 minute walk test, lab work, an EKG, an ECHO, and then meet with the doctor.

We'll hopefully find out if the medicine is doing anything, if it's affecting his liver at all, and then wait for our next month's delivery to arrive soon. This next delivery will be the full dose. I'm wondering if they will start any other meds.

Joshua and I have compiled a list of questions for the doctors.

More to come soon.