Gentges Zoo

Life Lately (Part 2)

2011-06-15T11:02:00.007-04:00

It's hard when someone moves away. We have had friends move away before, but thankfully, they have moved back!!!

We had very good friends move away this year in January. We love the Abel family very much and we were sad to see them leave. Our whole family got along well with their whole family!! Not only is Kelly a good friend to me but her daughter is one of Micayla's best friends.

Kelly and I weren't sure how much more we could take of our daughters being sad over missing each other. We try to be sympathetic and understanding but at the same time telling them that they need to stop being so down and that they have to move on with life. I kept telling Micayla that Ashley didn't die and to stop acting like it!

So..... after several months of missing them, we were able to go visit them, in Michigan!! Alex, Micayla and I flew to Michigan and spent 11 great days there with them!!

We went to Splash Village in Frankenmuth, MI. It is an INDOOR water park! It was lots of fun!! Two of the slides go outside the building and then back in. And they were fast... and in the dark since they were complete tubes!

Afterwards, we went next door to Bronner's Christmas store. It's the largest Christmas store in the world with year round displays!! It was crazy. If you can think of it, they probably have an ornament for it!!

One day we spent at Dan's parents house on Loon Lake. The kids had a great time swimming in the lake. It's the first time my kids have swam in lake water that they remember. They weren't too fond of the mucky feel of the bottom but it didn't stop them from having fun! Here is a pic I took sitting on the deck.

We had so much fun there, even on the days we just stayed at home! Very relaxing!!

Thanks Dan and Kel for such a great time with you guys!! We feel right at home in your home!

Life Lately (Part 1)

2011-06-15T10:44:00.005-04:00

I've been bad about updating the blog lately. Lots of life going on. It's good but doesn't allow for my mind to be able to put a post together!! (There will be more to come on what we've been up to.)

John has started a new job!! After many, many, many L O N G months of not being happy at his job, he accepted a position with a company that handles large losses in the commercial side of the disaster restoration business. We are very happy for his new job! The only downside to it is this... he travels up to 75% of the time. Actually, lately it feels like he travels 100% of the time, but I'm not complaining, yet.

He left on a plane May 5th for Paducah, KY. He was assigned to be a Project Manager/Supervisor over a shift at the Harrah's Casino and Hotel in Metropolis, IL. The Ohio river deposited very large amounts of water, mud and yuck into the hotel there as well as the parking lots around the hotel.

He was assigned to be the night shift manager after receiving a promotion after only 10 days. They work 13-15+ hours a day, and around the clock. He has not had a day off since May 5th.

He was able to get Brandon and two other guys who have worked for him here in Jax, a job out there as well. I sure hope those boys are saving their money!!!

It's all very crazy to me, but he is very happy to be working for a company that values and appreciates him.

After completing the Harrah's in Metropolis, he was sent to the Harrah's in Tunica, MS.

He comes home this weekend. Only for a week but I can't wait.

Easter Sunday

2011-04-24T17:26:00.006-04:00

Today is Easter Sunday!! I'm thankful to know it didn't end on Friday and that Jesus rose from the dead.

It was even better today to have family celebrate with us. John's parents are here. Everything's better with a Grandma and Grandpa!!

Today was also special because Alex was able to lead worship with the band on one song. I love seeing that boy sing!!!

You can see it by clicking on the link below... He is singing "I Will Rise" by Chris Tomlin.

https://www.youtube.com/watch?v=5k0kiofc-30&feature=player_embedded

Hope you all had a great day today!!

American History Wax Museum

2011-04-18T20:00:00.005-04:00

We just completed our 2nd year in the Unfailing Homeschoolers Wax Museum. The kids choose who they would like to showcase depending on the assignment. This year we were to do someone in American history.

The kids had to write a monologue to recite each time their "start" button was pushed. This brought their character to life. They also had to make a backdrop and an information board.

Alex decided he wanted to be John D. Rockefeller...

Micayla chose to be Elizabeth Dole....

They did a great job! It's always a lot of work but well worth it.

The guests bring their loose change to donate in each person's containers after the "figures" are done speaking.

This year the proceeds were given to Wolfson Children's Hospital NICU. They raised just over $500. YAY!!!!!

We were very proud of all the kids who participated. I always learn so much about people I've never heard of!!!

Wonder who we'll be next year??

Garden 2011

2011-04-03T19:00:00.008-04:00

I've always wanted to plant a garden. I had no idea how to and was sure nothing would grow. Well... today John built us a raised bed box and we planted one!!! He knows way more about this garden stuff.

First we had to decide where to put it and turn over the soil... no one really enjoyed this part!

Then we had to pick all the grass, rocks and roots out...

Alex and Micayla helped too and they are really excited about growing their own food. Next we added garden soil and some secret sauce...

Love him!!

We planted tomatoes, cucumbers, yellow peppers, green beans, carrots and strawberries.

I can't wait to see what comes up!!! Fifty days to our first harvest!!!!!

Stay tuned for updates!

The secret sauce....

15

2011-03-23T17:29:00.004-04:00

That's how many years ago it's been since I married my love! We are so excited to be celebrating our 15 years of marriage today!!!!

I am extremely thankful for our marriage. We've had our share of ups and downs and it hasn't always been easy. BUT... it has totally been such a blessing to grow and mature with someone who loves me unconditionally. Seriously... he really loves me unconditionally!

And I'd do it all over again, no questions. I love this man more today than I did the day I said "I do."

I am thankful for him. When I was dating I didn't really know what kind of man I wanted to marry. I just wanted to be loved.

I will be forever grateful to God that he gave me a hard working man, a man who loves God, and a wonderful father to our children, all things I value so much and didn't even know how much I would or should. I know he will always take care of us until his last breath. Even though he has chronic pain, he gets up every day and goes to work. I pray Micayla will be blessed to marry someone just like him.

I am thankful that John loved me back when I wasn't so lovable. He has been quite long-suffering, patient and forgiving with me. I'm not really proud of who I've always been but am so thankful for God's mercy and grace, and a husband who loves Him and in return, could love me through some of my yuck. It was painful at times, but can't things that are worth fighting for be painful at times??

I love how much we've grown up together. We've learned to love God together, parent together, enjoy our uniqueness with each other, and learn to have meaningful friendships together.

Happy Anniversary baby!! I can't wait to celebrate 50 years with you! I love you with my whole heart and know we'll be together forever! I wouldn't want to do this life with anyone else!!!!

Our New Family Member

2011-01-27T08:24:00.003-05:00

Meet Jack...

He's been so much fun! He does this a lot right now. I'm not a big fan of pets on furniture and I wasn't thrilled that John put him on the couch, but we're gonna let that slide... for now.

Not sure how big he's gonna be but I'm guessing big. He's been super sweet and we are loving him!!

Christmas 2010

2011-01-06T19:02:00.002-05:00

Can she really be 11?

2010-12-04T12:05:00.005-05:00

I can't believe it's already been 11 years. Seems to go faster and faster each year.

Some pics from her day... a SPA day at the house with some friends. Thank you Mom and Julie for staying and helping. Not sure I would've survived all those nails, toes and hairstyles!!

It was a fun day and she had a great time. She has some really sweet friends!!!! They each brought their American Girl dolls too and it was a lot of GIRL fun!! Good thing we sent the boys away for the day!

Love you baby girl. You're such a huge blessing in my life!!!! We're so thankful God blessed us with you!!

Goodbye Mick

2010-11-02T16:37:00.005-04:00

It's been a hard 24 hours. Our best furry friend and companion died yesterday. It was a horrible day. Mick was the best dog ever. I know we all say that about our pets but he truly was the best dog for our family. He was passive and obedient. We only used a leash so other people wouldn't freak out. His size was rather impressive and intimidating to those who didn't know him. I think that was one of the many things I really liked about him. He was a protector for our kids. He was a best friend to our kids.

I woke up and at first sight of him I knew something was wrong. He was very round and bloated. Now I know Mick was a large dog, but this was way different than normal. He wouldn't lay down and kept retching and drooling. I could tell he was very uncomfortable.

My sister came over and offered to help get him to the vet. She is always there for the yucky days of my life!! Thank you God for her.

We took him to the vet where they confirmed with xrays that his stomach had flipped. It was also about three times the size it should be.

We had to make the worst decision ever. We had to say goodbye to our beloved pet.

After all the family had gathered, we said our goodbyes. It was absolutely horrible. Much worse than I ever thought it would be.

We stayed with him til he was gone. I just couldn't leave him.

It seems strange to me at times that I could be so attached to a dog. But he wasn't just a dog, he was MY dog. He loved me and could show it. He was such a HUGE part of our family, both in size and in our hearts. I think since we are home all day with him everyday, it makes it even harder to accept the absence.

We miss him terribly. We miss him singing happy birthday with us, chasing the squirrels, bringing presents to us when we walk in the door (whatever he could find on the floor, a pencil, paper, toy, shoe, etc.), going to get the mail with us, allowing the kids to use him as a pillow, sleeping with the kids with his head on a a pillow too, gladly cleaning up the cooking messes on the kitchen floor, waiting patiently for the "leftovers" at the table, listening to all of the kids secrets, and just giving out tons and tons of love and companionship.

We miss him.

Family Update

2010-10-27T10:56:00.001-04:00

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 www.donatelife.net and sign up! It's quick and easy! We thank you!!

Blessings!!!

Update on UF Visit

2010-10-20T12:05:00.003-04:00

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!

UF Tomorrow

2010-10-06T08:28:00.003-04:00

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!!!

It's That Time Again

2010-09-03T10:53:00.002-04:00

It's time for us to start school again!! We will officially start school Sept 7th. I am still a believer in not starting school until after Labor Day! I am hoping to be on a better schedule this year with the kids. I think the shock of everything with Josh has settled and homeschool can move back to the front burner.

A few months ago, when I was tucking Micayla in we were talking about school and I casually mentioned that maybe I should put them back in public school. She said, "No, Mom, why??" I said I didn't think we were doing enough. She then said, "Mom, how many 4th graders can tell you what Pulmonary Arterial Hypertension is?" Enough said. We may not have had the best academic year but they sure got a great medical education this year!!! Where is that on the standardized tests??

Anyway, Joshua started school this week!! It was a major fiasco but we got it done!! Just in case you didn't know... When you have a government agency paying for something, it doesn't always happen on the time schedule you need it to!!!!! We're not complaining, we are very thankful for Voc Rehab, but it sure can be a pain with all the paperwork and red tape.

He was enrolled in classes two weeks ago (4 of them). When we went to get his books, we found out that the college had not received payment from Voc Rehab so they dropped him from all of his classes!!! YIKES!!! Imagine our surprise at that moment.

So after many phone calls, we found out his plan had not officially been approved yet. UGH. We called everyday for a week. (Can you say squeaky wheel??)

The school told us we could enroll in classes up until they started, which was Monday, Aug 30th. Well, his plan finally got approved Monday afternoon. We went there Tuesday morning so he could sign everything. We left there and went straight to the school. Got there around 1:00pm. He started his first college class at 2:00pm. WHEW!!! We sat outside and went over his new schedule (only 3 classes) and got him re-acclimated to the campus and which buildings were where and off he went!!!

So, please pray for him to stay focused on school and get his work done, without John or I having to stay on top of him! That's my desire!!!

I'm looking forward to all of us getting back to a schedule. Yes, I actually said that, scary I know.

Hope you all have a great year!!!

Blessings to you!! I'll leave you with this... one of my new favorite quotes...

"Our greatest fear should not be of failure but of succeeding at things in life that don't really matter." ~~Francis Chan

Uh Oh... Look Out!!!!

2010-08-11T16:33:00.003-04:00

Well.... the time has finally come... Joshua received his driving permit today!!! YIKES!!!!

It's been a long time coming but as we all know, the timing is just right!

John has been pushing Joshua this summer to study for his drivers license. I have never been super sure about this so I haven't said too much about it. Driving offers a whole new set of responsibilities as well as distractions so it hasn't been on the top of my priority list to put him behind the wheel of a car, much less my car!! Up until the last 6 months or so, Joshua has not been interested in getting his permit, but it's amazing what can happen when your Dad is breathing down your neck!!

So... today Alex and I took Joshua to take his test to get a permit. The first thing they do, after going over the 100 pieces of information they require you to bring, is give him the vision test. "Please read the 12 characters in row 5 Joshua." Joshua proceeds to read only 8 characters. The man kindly asks him to read the last 4. Joshua reads the 8 characters again. The man says, "you're only reading the first 8." Joshua then says "there are only 8."

UH - OH. I'm standing there wondering what is happening and thinking we're going down fast!

He asks Alex to look into his machine and see if there are 12 characters and Alex said there were. Joshua looks again and can only see 8. I'm standing there thinking... "maybe he's not supposed to drive!!" The man has me look and tell him what I see and I see 12 characters. Hmmmm.....

At this point, Joshua is getting mad, which I'm sure Alex and I are the only one's who can tell. Mad for Joshua is like most of us when we're slightly frustrated.

So, the man gives us a green form to take to our eye doctor and have him verify his prescription and answer a handful of questions about Joshua's eyes and how they will affect him driving. However, he still allowed Joshua to take the written test. So... off Josh went to take the test on their computer. Meanwhile the man tells me that you can be blind in one eye and still drive. Whew... he may make it!

We waited outside for him. When we came back in,about 20 mins later, he was finished and giving me a thumbs up as I walked towards him!!!!

Of course, we left the DMV and drove straight to the eye doc. I was not going to make him wait after that!! So... we waited at the eye doc for him to get to the green form in between patients and we were off... back to the DMV!

So..... now the practice begins!!!

Please pray that God gives us T O N S of patience and safety!!!

Way to go Josh!!! Super proud of you!!!

UF Visit

2010-08-07T14:09:00.004-04:00

Well... we had our doctor visit with UF this week. I haven't posted a lot lately. Trying to enjoy our summer and relax before school starts.

Joshua is doing well. We are switching up some of his meds. We were able to switch one of his meds to only once a day, (from twice a day), and am still working on getting another one moved to once a day, from three times a day. Hopefully this will help with compliance. He really hates taking the meds so anything to help will be great.

He has been more fatigued lately. Not sure if that is from it being summer and just laziness or from something else. He tends to fall asleep just about anywhere and can fall asleep quickly regardless of what is going on in the room. He has been staying up later and such, but still getting to sleep in so I'm not sure. I'm just keeping my eye on it for now along with the doctors.

We don't have to return to the doctor for two months this time so that is always nice to have a break! We will also see his pulmonologist at our next visit as well.

Thank you for all your continued prayers for my boy!!! It's been a year hasn't it!?!?

Enjoy the rest of your summer! I hope you're staying cool!!! Heat index has been 105-115 the last few weeks. I'm done with summer!!!

Blessings to you!!!

Beauty from Ashes

2010-07-29T08:50:00.005-04:00

It seems like over the last several months, maybe the last year, things have been either on a downward slide or just stagnant. We've had many things we've had to digest and it's been a long road. Lots of appointments, job changes, etc. Most of you know what I'm talking about. Finding out your son has a rare, terminal disease is not something to digest easily or over a quick period of time.

We have had the tremendous blessing of having wonderful doctors, nurses, and social workers, a fantastic PH clinic, and insurance that has covered just about all of his medical expenses. His meds are quite expensive and we are so thankful for his insurance!

One appointment we've been having over the last 5 months, requiring many phone calls and hours and hours of waiting, is with Vocational Rehabilitation. They help people with disabilities get set up for success and transitioning to adulthood. They do everything from helping with a job search, career counseling, providing life skills, tutoring, and also helping with tuition costs, etc. We've been on a waiting list for quite some time waiting to hear what they are going to be able to do for Joshua. Each time I call I get told "it's in Tallahassee."

We were able to meet with them this week. YAY!! We found out they are going to be able to help Joshua by paying 100% of his tuition and books at any public school in Florida! John and I could barely contain our excitement! For once, this horrible disease has a benefit for Joshua! Because of this causing him to be labeled "disabled", it has now put him in this position to receive this HUGE blessing!

We are so happy for Joshua. He even said he feels like he can do this now with all the help he was told he would have from VR! They will provide a math tutor for him, (his very least favorite subject) and help him find a job, in his field, upon graduation and anything else he needs to help him reach his goals.

Thank you Lord for providing this HUGE blessing to us. We will continue to thank Him for all He is doing and will continue to do with Josh.

All of this just reminds me that we are not in control. We have choices to make, yes. But we don't have total control of what happens. I'm so thankful today. I am very happy that Joshua will not have to worry about money while he is going through school at FSCJ for his ASL degree. This will allow him to focus on his academics!! Pray he does that!!! I think he will.

It's amazing that through all the "ashes" of this last year, and all the changes Joshua has had to deal with, it feels like there is finally something beautiful from it all.

Continue to pray for a cure for PAH! I believe we might see it one day! And if you've not signed up to be an organ donor, please do so. Thank you!

Still Here

2010-07-21T22:44:00.002-04:00

No, we haven't gone away on some wonderful month long, (or two), vacation or fallen off the face of the earth. We've just been taking it easy this summer. With all we had going on with May, we're taking one day at a time, no plan, not much structure (to the dismay of our youngest... God thought it would be funny to give me a daughter opposite of me in that area.) Please forgive me if you've been checking in here and still get the same picture each time.

Hope you all are having a great summer! We are really doing well, other than the hamster drama in our house! Who thought it would be a good idea to get TWO of them??? Hmmm.... I'll blog more about that later!

Enjoy your summer and hug your family tight!

Mama and Daughter Get Away!!!!!

2010-06-17T17:31:00.013-04:00

The beautiful Hampton Inn on the Harbor at Amelia Island!!! Beautiful!

We walked over to the marina to see the water and boats...

but we also saw this!!!!!

We named this cute little sea otter Amelia. We don't really know the gender but Micayla wanted to name it so it's a she!

We also saw this along with jumping fish! I couldn't get a pic of the fish... they were too fast, most likely running away from whatever wanted to eat them! But I was able to get a picture of this baby jelly fish.

Then we did some shopping in the historic district. It's so pretty and was just perfect for us to wander around. The hotel is right on the corner so we could walk where we went. Amelia Island hosts a shrimp festival every year and these little guys were all over. Micayla loved them so we had to take pics with them!

Then we did this...

We had a great evening... we ate at the Marina Restaurant. It was yummy.

Then we went back to our room and popped popcorn and had M&M's. We spent a couple hours having girl talk. We mainly spoke about different changes she'll experience over the next few years and how to deal with them. It's such a fun time and I just want to prepare her for the next part of growing up!!

The next morning we got ready to go SHOPPING!!

We painted our nails and headed out... gotta have pretty toes!

We saw more of these...

I told her she could choose one thing to buy. So after much shopping and deliberation... she chose this. I love it!

We saw one more of these on our way out of town after having a yummy lunch at Karibou Cafe.

I must say thank you to my Mom for making this trip possible for us. I love that she travels and accumulates lots of hotel points and doesn't mind sharing!!! Thanks MOM!!!! We love you and had a great time!!!

The Cake

2010-06-02T17:02:00.003-04:00

No Words Needed

2010-05-31T21:19:00.004-04:00

Last Week Until This...

2010-05-24T08:33:00.002-04:00

Update... UF Visit This Week

2010-05-02T16:59:00.004-04:00

So, it's been a lot lately. We have had a lot going on with the kids schedules and Joshua's trips to UF.

We had our appt with Joshua's doctor regarding the results of the heart cath in addition to his regular monthly appt (6 min walk, labs, EKG, and ECHO.)

It was an emotional visit for me. We discussed what things look like as far as the slight progression of the disease. He discussed there are 4 classes of PAH, 1 being the least advanced and 4 being the most advanced. Joshua is at a high 3 almost to 4. He told us there could be an argument for going to the next step with Joshua since his numbers from the cath were not great but he is optimistic that we don't need to do that just yet. The next step would be the continuous IV meds through a central line. After that happens, Joshua would most likely be placed on the transplant list. Of course he answered my many questions and I am just trying to stay hopeful that won't happen for a long time and if/when it does, that an organ would be available. This makes me sad just thinking about it since that means someone else would lose their loved one.

Most of this conversation happened while Joshua was getting his ECHO so just John and I were in the room with the doctor. It was a lot to hear. I hate having these conversations about transplant like this is just a normal conversation. I never thought I'd be sitting in a doctor's office talking about this, but then again, who does? I've almost felt like Sally Field in the movie Steel Magnolia's during the cemetery scene where she loses it with her friends. From laughing to crying to yelling. That's how I've been feeling. It's hard. I know God is going to use this for good but it still is hard.

Micayla had made a card for Dr. A that read:

"Dear Dr. A., This is Joshua's little sister. Thank you for taking care of my big brother. I love him so, so, so much and I don't want to lose him. Love, Micayla".

She had drawn very detailed pictures of all of Joshua's equipment. His CPAP machine, Tyvaso machine, an EKG monitor, blood pressure cuff, syringe, and pill box. It was very cute but makes me cry thinking about it.

We gave it to him and he spoke with her about becoming a doctor and finding a cure for Joshua. He was impressed she knew what all the different things were for. John and I both had tears in our eyes.

Once we were finished talking to Dr. A. he told us he would not be seeing us again. He has to go overseas to take care of his parents. Of course, I started crying.

Lots of tears this visit. I know we will be in great hands with Dr. F. but it's a comfort thing. We've seen him every month, sometimes several times a month, for over a year.

Anyway... that's all for now. I'll leave you with this picture we took after hearing he would be leaving. Thank you Dr. A. for taking such good care of our boy! We love you!

Sleep Study

2010-04-19T18:25:00.001-04:00

I love my husband! He is taking Joshua all by himself to UF tonight for his sleep study!!! I am so thankful he agreed to let me stay home and get caught up on laundry and housework! (Yes, both machines are running right now!)

They are repeating the sleep study since he is still obstructing at night.

Please pray for safe travel and for the test to be thorough and accurate!

Blessings!!

Final Update for Today

2010-04-14T21:28:00.003-04:00

We are home now. Josh is tired, we are all tired. It was a long day. I'm feeling a little down I suppose. It seems like we didn't get the best news today, but it wasn't bad either. It could be worse.

One thing I think I forgot to tell you is they did go into the PDA (his heart defect) and occlude it but the minute they occluded it, his pulmonary pressures shot up so they had to back out. His pulmonary pressures are the same as his overall blood pressure. It is supposed to be 2/3 less. Some parts are slightly elevated more than last year. I did not know they were going to do try this until right before he went back when we were speaking with the doctor. I think I'm glad I didn't know this before today.

The results of the PFT's yesterday (pulmonary function tests) were slightly worse than last year. I thought all the numbers going down was a good sign when I read the report without the doc. The numbers are supposed to go UP not down. (sigh)

His CPAP is not helping like it should. While his pulmonologist was there with us in the cath lab, she was able to witness exactly what's happening with him. He's still being obstructed, even with CPAP. I'm thankful she was able to see what was happening.

So... with that info, they have scheduled another sleep study to be done Monday night. The respiratory therapist just left the house after resetting his machine at the new higher level. We're also going to give him a little something to help him relax and sleep a little better. We'll see if this helps.

We also will be returning to UF in two weeks to see Dr. A (his cardiologist).

He is down today. I've only seen him like this 3 times since this diagnosis. Like I've said before, going to UF is always a picture of reality and the severity of this disease and today was rough.

He isn't allowed to remove the bandage (covering the right groin - the entry point for the cath) until tomorrow around 11am and it is driving him crazy!

Thank you for your support for Joshua and our family.

Hug each other and do something nice for someone else.

Joshua Update #2

2010-04-14T15:16:00.003-04:00

We're just sitting here watching him sleep. He was able to eat lunch and use the bathroom (all while lying flat mind you), and he's back asleep now. He had to lay flat for 4 hours after the cath. We brought his CPAP machine so he could have it during surgery and recovery.

We had a planned visit with his pulmonologist while in recovery. I was so happy she was able to be here to witness for herself what he does while he sleeps. It looks like he's gasping for air, or choking, even while wearing the CPAP. So, she ordered a new sleep study to be done saying the CPAP is not set high enough for him and maybe that will help him want to wear it more. (He hasn't been good about wearing it every night.) We also have to have the medical supply company come out and adjust his machine.

So while we've been waiting here, we have already scheduled the sleep study (Monday night), and the respiratory therapist will be at the house tonight to adjust the machine.

We also have a follow up appt in two weeks with our regular cardiologist at the pulmonary hypertension clinic here at UF to discuss where we go from here.

Joshua Update

2010-04-14T11:39:00.003-04:00

Dr. Joe just left. He told us Joshua did okay with the procedural sedation. They did not give him general anesthesia because he is too high risk.

He told us the pressures look the same as they did last year but he is going to get the numbers finalized and give to us later. It's not a bad thing. At least they aren't worse, right?

We will see his heart doc in two weeks to decide where to go from here. We may be adding another drug.

Joshua was upset before he went in because he didn't want to do this today or ever. He's a little tired of the whole thing actually.

We're very thankful for Dr. Joe and his patience and the time he spends with us answering our millions of questions.

Thank you for your prayers. Please continue to pray for Joshua and his ability to deal with all of this without losing his wonderful, peaceful personality and faith.

More to come.

Blessings!!!

Josh's PFT's

2010-04-13T16:39:00.003-04:00

Joshua has finished doing his PFT tests and we're back at the hotel now.

Good news is he seems better this time and not so worn out!! A lot better actually. I wish I knew how to read the reports more and what all the little acronyms mean. We'll find out tomorrow when we meet with the pulmonologist.

They wouldn't let me go back with him this time. I hate that. I like to know exactly what is going on with him! While waiting in the waiting room, I was able to visit with some other people, of course. Surprised aren't you? Please be in prayer for Dennis and Mary. Dennis is an older gentleman with pulmonary hypertension and sarcoidosis. His first visit is tomorrow with the PFT's and then to meet the doctor to see if he's a transplant candidate. They were very sweet and I hope he will be able to get fantastic, healing treatment at UF!

So... we will be at the hospital first thing in the morning for the heart cath. Please keep Joshua in your prayers for no complications! I am also praying for good news and no progression!

I'll try to update as soon as I can.

Thank you for your prayers!!!!!

Busy Week With Doctors

2010-04-11T22:16:00.004-04:00

This week is a busy week for us. Tomorrow we see John's doctor to find out how he's doing with his shoulder. It's been a L O N G recovery process with lots of pain. I hope I never have to have shoulder surgery.

Also this week, we will be in Gainseville for Joshua's FULL PFT's (which wear him out)and his heart cath. We are hoping to hear good news or at least news that there is no progression. I'm curious to find out what his pulmonary pressures are for sure. The cath is the only way to know exactly.

Please keep them in your prayers. We do appreciate them immensely!

Consider yourselves hugged!

History Fair

2010-04-03T10:32:00.010-04:00

We just finished a six week project we've been working on for school. The kids were in a history fair last weekend with our homeschool group. It was called a wax museum really. They were to choose who they would like to be, from any time period, and then research, memorize a brief monologue, dress the part, have props and a backdrop. It was a lot of fun and turned out to be a great evening for everyone there. It was fun for me to get to make their costumes! I haven't sewn in a while so it was rather interesting to do it without a pattern! We had a box of hotel sheets in the garage my mom used to make curtains so it was the perfect costume and backdrop material... free! Thank God John was home to help with the backdrops! He has a much better eye than I do for art work! They also wore a button on them and when someone came to them, they pushed the button to "bring them to life."

Each child also made a donation box for "visitors" to drop change or bills in to raise money for Haiti Relief through World Vision. We raised over $500 as a group! It was very exciting!!!

Here are a few pics!

Alex making his backdrop:

Can you guess???

It makes me want to sing the song... "D a v y, D a v y C r o c k e t t, king of the wild frontier!!"

He loved having his Dad's REAL powder rifle and big knife! We didn't tell the other mom's it was a real gun!

Micayla chose...

At her Missions of Charity...

She did a great job "coming to life" each time. She said the only thing missing for her was the wrinkles!

Can't wait for next year!!!

Whew... long day!

2010-03-06T20:13:00.002-05:00

Well... today was a rather long day. The block for John wore off around 11pm last night. We were up every two hours either changing his position, taking meds, or putting him on his machine for pain. He eventually ended up in the recliner. He was really hoping he would be able to sleep in our bed but it was too uncomfortable to lay down.

So... the day was spent taking 10 minute naps here and there, cooking, taking meds, hooking him up to his machine and keeping track of the kids. Thank you Grandpa John for being the taxi driver today! It started this morning taking Joshua and Alex to the church for them to go to a competition with several youth groups downtown called Teens Involved. They were both in different drama's and Joshua did puppets as well. They came home very excited since they were chosen to move on to regionals now!! Way to go guys!!

The Abel's took Micayla so she wouldn't be stuck home with the tired, worn out parents. Thanks guys!

Our friends made us dinner tonight. It was something I knew I was going to have to do.... eat FRESH meat, that he killed himself! UGH!

John couldn't wait for Marcus to cook some of his wild hog for him. He made us stroganoff, salad and bread. I will have to admit... it was good! Thank you Marcus and Devon for dinner!!

Did I tell you we have such wonderful friends?! We are very well loved. Thank you all for continuing to check in on John and keeping us in your prayers.

We've been told tomorrow is going to be the worst day. Fun times here in the Gentges' house!

Blessings~~~

UPDATE on John

2010-03-05T15:30:00.003-05:00

Surgery went well!!! Hallelujah!! I'm so thankful he's okay. I woke up at 3:15am with all kinds of crazy thoughts in my head. I was worried and couldn't sleep so needless to say... I need a nap.

The days events went like this...

3:15am... woke up... got a drink, checked the doors/locks, checked on the kids, went to see if Josh was wearing his CPAP... he wasn't (aaarrrggghhh!!!), fed the fish, went back to bed!

4:00am... listening to John breathe, hoping I would hear it again tonight and for a bazillion more nights! Crazy thoughts still. Snuggled up close and thought of everything I had already packed, wondering what I was forgetting.

4:30am... Micayla crawled in our bed... she does this every now and then. I don't usually mind, she's my last baby to do this.

4:45am... The bed was crowded now so I got up and updated the blog. Then shower, got the rest of the family up and off to drop the kids off.

6:00am... Dropped the kids off with wonderful friends, the Myers. Bless their hearts for having our kids all day starting at o'dark thirty. Side note... Happy Birthday Cailey!!

6:18am... Arrived at the surgery center. Gave paperwork to them (already filled out of course), checked in. Sat down to wait.

6:30am... John was called back to get him prepped. Then they called me back. Anesthesiologist explained his part... then I had to leave while they administered the block. I went with the pain management guy, Adam, to get an education on the unit they sent him home with to help stimulate the muscles and help with swelling/pain/etc.

Then I went back to sit with John. He was out of it. I would post the pic I took of him but I don't think he'd appreciate it. It was fun trying to get him to talk to me but he was so out of it, it wasn't as much fun as I was hoping for!! hee hee

Anyway... back to the schedule...

8:30am... Dr. Murphy showed up and off they went... I said "have fun" and "do a good job!"

Then I went to the freezing cold waiting room. Sent out a million texts and then my wonderful friend Julie showed up with a Starbucks Chi Tea Latte and a blanket for me!!!! Did I tell you she is wonderful!!

Around 10:00am they called me back to just go over how it went and letting me know he was out. They gave me two pages of some really cool pictures of everything they did, with before and after shots. It's just amazing what we are capable of doing these days medically. His shoulder was a mess. The labral tear was quite large. They repaired it along with the rotator cuff tear and also shaved off some bone spurs. YUCK!

10:30am... got to go see my honey again. Oh boy, he was really out of it this time. He asked me 100 times what the ice pack was and what the sling was. And to get him some water. Okay... maybe 10 times. Since he has the block he can't keep his right eye open. Of course, being the wonderful wife I am.... I took his picture! Again... he'll kill me if I put it out here but it gives me a great laugh each time I look at it! This is all just payback for all the times I've had surgery in our married life. It always comes full circle doesn't it?? It was much more fun to be on this side of the bed!

Once he was able to get his scruples together, we were discharged and sent on our merry way.

I stopped by the store and picked up some things and came home.

1:00pm... arrived home... gave meds... made lunch... ate. Showed John the pictures and explained what they told me. He was quite tired at this time, we both were so he went to lay down while I put everything away.

2:00pm... went to close the garage door ONLY TO REALIZE... the cat knocked over the hamster cage and spilled the ENTIRE cage on the floor. Of course, the hamster is now missing. So...

I cleaned up the mess. Fixed the cage, refilled it, and set it down hoping he'll return... again.

2:50pm... laid down with my honey hoping to catch some zzzz's.

3:10pm... woke up to John messing with the sling.

3:15pm... got up. Swept the front porch.

Now I am waiting for Josh to get home from school, thank you Rena!!

At 4pm, his respiratory therapist arrives to fit him with a new CPAP mask. Hopefully this one will be more comfortable so he'll wear the darn thing!

Thank you for all your prayers for my family. God is so good! Please pray for a quick smooth, event-free recovery!

And...let's hope that stinkin' hamster is found!

Love ya!!!

Surgery Today

2010-03-05T04:47:00.000-05:00

The day has finally arrived!! John's surgery is today. He's been waiting for 6 months to have his shoulder fixed (rotator and labral tear). We're nervous about the recovery and what it's going to take to get it done but at the same time we're thankful he will feel better and not be in pain anymore. He (translate that to WE) hasn't slept well in almost a year due to the pain.

So please be praying for an uncomplicated surgery and a quick recovery!

Thank you...

Update... UF Visit This Week

2010-02-27T21:55:00.003-05:00

We had our monthly visit to UF this week. Here's the recap...

Good news: He added another lap to his 6 minute walk! His docs want him to start slowly pushing himself to see what his body does. His heart rate jumped and he was tired but it was good to see him do a little more!! Also, his O2 sats were great for the second time in a row. He feels good, looks good and will be having a heart cath next month to verify his pressures and see what is happening in there definitively .

Bad news: He lost a pound. I know it's not much but it is for him. He also was given quite the "lecture" from his doctors about not being compliant with his meds.

I finally had to spell it all out with them. Mostly my frustration with him not being honest with me about taking his medicine/CPAP. I've been finding out over the last few weeks (either by checking his dose counter or counting pills, or speaking at length with the pharmaceutical company) that he isn't being honest with me and is not either taking ALL the doses he needs and/or not wearing his CPAP. I know it's a lot for him to remember and it is a lot for him overall but he needs to understand how important EACH medicine/treatment is for him.

I told his doctor that I didn't think he realized how serious his disease is for him. It is hard at times to think he's even sick. He looks fine, acts fine, and to him... feels fine. SO... she got out a copy of the heart and drew on it, made notes on it and went over everything for him, again, to make sure he knew it. I think now that we've been hearing all the terminology for over a year, it made more sense to him. He was not happy to hear it all and said it scared him when I asked how he was feeling. I said good.

Not to be mean, but I want it to scare him. I need it to scare him. I want him to be 100% willing to do whatever it will take to keep him alive for a long time.

He really does hate the CPAP so we are waiting to hear from the respiratory therapist to see about switching out masks. I really was hoping the doctors would tell him that part wasn't so necessary and they would let him drop it but they didn't. Not even a little.

One thing I've been thinking about and wanted to make sure I brought up with his doctors this visit is that Josh has never felt sick. He had some wheezing and such but overall has never really FELT this disease. So I wanted to know what they thought about stopping all treatment until he feels sick. To let him feel what this is going to do to him. Maybe then he would be more compliant with the meds. OF COURSE, this is NOT something I want to do but have just been wondering if it would help and wanted the doctors input.

They gave me thier input alright. They told us that if we stopped all treatment, Joshua would have 2-5 years to live. That was hard to hear again but now we know... it's a no brainer isn't it?

So... I am hoping and praying that with this new "enlightenment" for Josh, that he will get on board and take his meds and do everything he needs to do. Pray for him to be diligent and willing to do whatever it takes.

It's such a fine, muddied line when I try to figure out how much Joshua is capable of doing himself and how much is he just being lazy/not caring? How much can I expect from him? Is this as good as he can get? Do I need to just hand him his meds and watch him take each dose?

So... I spent some time speaking with our social worker Mary (every patient with a terminal illness has a social worker assigned to them). She is so wonderful, very helpful and extremely knowledgeable. She is requesting we get some neuro psych testing done for Joshua so we know what he is and is not capable of doing himself, how he learns, and how he processes things. We will be doing this very soon. Hopefully this will help me also know how much I need to do for him vs. how much he can do for himself, and basically how much to expect from him.

Another psych evaluation we are doing is for Voc Rehab. I set up a meeting with them once I found out that if you have a disability, they will help cover part of your college tuition. So please be praying they will want to cover most of his tuition next year!!! As far as I know, the testing they are doing is different than the testing UF will do.

That is most of our visit this week. It was a lot of info but a very informative and much needed visit.

We go back next month for the heart cath. We will find out our date hopefully next week.

Until then, please pray for Joshua to stay the course and keep on keepin' on!

Blessings~~~~
Michelle

2,779

2010-02-16T20:22:00.000-05:00

That is how many miles we drove to doctor's appointments last year.

2,779 miles....

That's a LOT!

Do You Need A Laugh??

2010-01-22T11:34:00.000-05:00

This picture makes me laugh every time I see it. I thought I would post this for you... enjoy!

Bad Tires On Wet Roads????

2010-01-21T13:34:00.003-05:00

John sends me a text to check my email. He emailed this to me ... thanks honey! He said he was only going about 10 miles an hour in the turn. He barely went over the lip of the asphalt but the weight of the truck slid him down the grass to the ditch. Lovely.

Thank goodness he wasn't hurt and there isn't one mark on the truck from it. Tow truck came and pulled him out and he went on his merry way... hopefully to the tire shop!

Thankful in FL today!!

Finally... some good news from UF!

2010-01-16T09:52:00.005-05:00

We had our monthly trip to UF this week. It was the first time in 10 months of monthly visits that we received good news!

The best news is that Joshua's O2 sats were finally normal in both the upper and lower extremities. Usually there is about a 10 point difference and the lower extremities have only been in the upper 80's. We were quite surprised at the upper 90's Thursday!

The other good news is that Joshua gained ONE pound!!! Woo Hoo!!! I told him I could gain 10 pounds in the time it takes him to gain one. (He asked me if I'd like to take that challenge and I quickly said NO!) He is now officially 5'7" and weighs a whopping 113 pounds!!! He still does not have a trigger for hunger (unless it's been 24 hours!) or thirst so I will still be pushing food at him as much as I can. We buy whole milk for him and put butter on anything we can for him. The COMPLETE opposite of how the rest of us should be eating. And before you decide to tell me how bad that is for him, it's what the doctor told us to do. So... we'll go with it for now.

After we left UF he said he wanted something sweet. I told him I'd stop wherever he wanted. On our way home he had four donuts from Krispy Kreme, 2 hot dogs and an ice cream cone. We pass by a little dairy freeze place every month so Josh wanted to try it this trip. It reminded him of Zesto's back home in Jeff City. I couldn't believe how much he ate! I told him I cannot hang out with him if he isn't going to choose REAL food!! I wanted a salad from Applebee's. Maybe next time!

SO... back to the doctors. They were very pleased with the weight gain and the o2 sats so they are giving us a 6 week span between our next visit. At that time, we will be scheduling a second heart cath. This makes me a little nervous but at the same time I am cautiously optimistic. I want to believe the meds are finally working and all is fine but at the same time I think I am in self preservation mode with not wanting to be let down next month.

His doctor also wants him to double the distance he covers during his 6 minute walk. Right now he's at 432 meters. So we'll see how he does. This will be great to see him start being able to challenge himself and start being more active!

Thank you for your prayers. It truly is uplifting for us to know so many of you are praying for our family.

To close, I'll share this picture with you. It's my favorite of the year, maybe.

Recap of 2009

2010-01-07T21:57:00.005-05:00

I've been reflecting on the last year, 2009. It was a full year for us, crazy at times, with both good and bad. We can say though that we are blessed beyond measure. We are so thankful for the wonderful friends and family we have.

We are mostly healthy, and still very happy. Our family is still kind to each other and we are well loved by many friends.

This year took quite a turn for us when Joshua was diagnosed with a terminal illness called Eisenmengers Syndrome first in March and then definitively in June by heart cath. It's a combination of Pulmonary Arterial Hypertension, (or PAH, or just PH) and his Patent Ductus Ateriosus, or PDA which is a congenital heart defect. It has been a year full of monthly, if not more, visits to several different doctors as well as hospitals. Our favorite to date would be the hospital on the University of Florida's campus in Gainesville. They have a fantastic PH Clinic and team of doctors/nurses and case workers who have been simply wonderful. I've learned more about the medical field and this disease than I thought my brain could handle.

We're blessed that Joshua is doing and has done as well as he has for so long. I pray he will continue to do well and be able to do the things he wants to do. Right now he is on track to graduate from high school in May. I cannot wait!! After high school he plans to attend college at FSCJ and get his degree in ASL to interpret for the deaf and hard of hearing.

We continue to deal with a LOT with Joshua's medical issues. I've been on the phone most of the morning between doctors and pharmaceutical companies. The nurse is coming today to show us how to start his 5th medicine we are adding to the mix, Tyvaso. It will be taken 4 times a day and is a nebulized inhaled medicine. Should be interesting.

Next week we are also meeting with a medical company who is bringing us the equipment to start his CPAP/BiPAP. He'll wear the mask at night to help him get better oxygen saturation levels while he sleeps.

Hopefully all of this will help his tolerance for exercise and exertion so he can start DOING something and not have to be so sedentary. I'm also hoping it will help him focus more while doing simple tasks as well as school work. He graduates from high school in May... we can't wait! He hopes to attend FSCJ and get his ASL Degree to interpret for the deaf/hard of hearing.

The rest of us are doing well. John had a small stroke in Sept this year. Scared me to death. He is healthy now since he QUIT smoking and is taking medicine to help lower cholesterol. I am very proud of him. Hopefully that will be the last we see of any hospital stays for him! He will be having surgery this spring on his shoulder to repair the two tears, one in the rotator cuff and one in the labrum. I really don't know how he works every day and deals with chronic pain.

Brandon is celebrating one whole year of being out on his own!! Woo hoo!! He's learning what it means to really be an adult! He is still working for Servicemaster/GRG Construction and doing rather well. We are proud of him.

Alex and Micayla are in their 4th year of homeschooling and doing quite well, if I don't say so myself! Alex is looking forward to trying out tackle football this year. Not sure about that for me, but he can't wait. Micayla is playing the piano and got her ears pierced this year. Makes me sad how quickly they are growing up.

I am just happy to have such a great family to call mine. I continue to teach piano and violin and enjoy being with my kids.

I also have been trying for the last three months to set up a working budget. It's hard. We're not great at money managing so now is the time to start learning. It's tough, but we're gonna do it. Pray for lots of patience and peace while getting all of it ironed out!

Lastly, my grandpa, Robert Murasko passed away early morning on Christmas Eve. He has lived here with my sister since October 2008. She's been his most excellent caregiver for the last 4 years. It was rather unexpected but peaceful at the same time. He is now dancing in heaven.

I hope you have a happy and healthy 2010. Most of all, I hope you have someone to love, someone who loves you and you know that above all else, Jesus loves you.

Christmas 2009

2009-12-25T17:01:00.004-05:00

This Christmas has been a rather interesting blend of joy and sorrow.

Yesterday, my grandpa, Robert Murasko, passed away rather unexpectedly.

He had fallen last week and fractured his pelvis in two places. He was doing fine and my sister was making plans for extra help when he came home. She has been his most excellent, full time care giver for the last 4 years. I have watched her, in total amazement, take care of his every need and NEVER complain. She really did treasure the job she had in taking care of him.

The kids and I had just taken him decorated Christmas cookies and cards two days earlier. I'm so thankful for that visit now. He was fine and happy to see us.

He died from an abdominal aneurysm on Christmas Eve.

My extended family will be coming next week. I am so excited to see them but very sad for the reason.

Please hug your family and remember that above all else, Jesus Christ was born to offer us hope and salvation. He is the reason we celebrate today.

Merry Christmas!

The Gentges Family

2009-11-20T10:00:00.006-05:00

Homeschooling sure makes life interesting!!!

One day last week while we were doing our math, Alex got up to let the dog out. It was another beautiful fall day here. Sunny, warm and a slight breeze.

Alex walked outside noticing something down by the back fence. It went a little like this:

Alex: "Mom, come here!!!"
Me: "Alex, get in here, you need to get this math finished."
Alex: "Mom, there's a bird in the yard and it's hurt." (He tells his sister to get a box.)
Me: "Alex, leave it alone! Don't touch it! Get in here." (I walk to the backdoor, really not interested in this bird and just knowing Alex is trying to blow off school.)
Alex: "Mom... please come here. It's alive! We have to do something!!"
Me: (realizing math is losing it's luster) "Alex, don't touch it."

Meanwhile, Micayla is coming out with a shoebox with holes punched in the top.

Alex: "Mom, I don't think it's hurt, I just think it's stuck."

OH GREAT. Now all math is out of the minds of my babes and they are focusing on this bird. Alex pulls the ~~grass~~ weeds around the bird to get it loose.

Alex: "Mom, it's covered in burrs." (The soft, flat one's that stick to you.)

We examine the bird. He's in the box. The kids get out their winter gloves so they can hold it and start taking off the burrs. (There's one reason we need gloves in Florida!!)

So I realize we now have a bird and I don't want a bird. What are we going to do with this bird??

So I get on Google and look up wildlife rescue places in our zip code. I didn't want just a critter control person. I found an animal hospital, very close to the house. They are a wildlife drop off. Who knew???

So... we ended up taking the bird, who the kids named Lucky, to the vet. They cleaned it up and sent it off to a bird rescue who, if possible, will release it back out in the area it was found. Whew!

We did find out it's a Great Crested Fly Catcher. We did research on it when we came home so the school day wasn't a complete loss was it???

And just because I know you want to see...

UF Results

2009-11-20T09:28:00.003-05:00

Well... as Josh said... "today was a long day Mom."

I concur. He actually fell asleep on the exam table (above) while I was speaking with the doctor. She said it's not normal for him to be able to fall asleep that quickly and in the middle of the day, while we're talking. That just confirms he's not getting good sleep. I'm glad she could see that while we were there since we have noticed him being more tired lately as well.

It was a long day. We had our normal appointments in Gainesville today as well as meeting the pulmonologist again today.

First with the cardiologist... there is still no improvement with the meds. They aren't saying there is progression of the disease either so that is good?? They are going to increase one of his meds to the maximum dose. They are really hoping they can lower the pulmonary pressures. Dr. A also wants to add another medicine, Ventavis. Their website says:

"Ventavis is delivered right to the lungs—the site of the disease. Ventavis is the only inhaled PAH therapy that can be given alone to help patients treat PAH symptoms to walk farther and breathe easier with ordinary physical activities. It can also be safely used with many other drugs. Ventavis is approved for the treatment of NYHA Class III or IV pulmonary arterial hypertension (PAH).

In clinical studies, Ventavis has been shown to decrease pulmonary arterial hypertension signs including lowering high blood pressure and resistance in the pulmonary artery (main blood vessel) leading to the lungs to allow the heart to pump more efficiently."

The Ventavis is also supposed to help decrease the worsening of PAH symptoms. The hardest part of this new medicine will be that it's supposed to be taken between 9-11 times a day. YEP. You read that right. The main concern of course is compliance. We have a hard enough time doing three-four times a day each day. I just can't imagine this 9-11 times. WOW. It is also a nebulized medicine so it's a little different than the normal inhalers he's used. The doctor did tell us if we can at least get 6 in that will be good. We're going to try our best. A nurse will come out and show us exactly how to use this medicine and it's nebulizer.

Another issue that was brought up is that Joshua is still losing weight. Although this month he only lost half a pound, compared to two pounds last month. The half pound is not horrible but it's the wrong direction. I was disappointed because I really thought he was going to gain this month since we really made an effort to get more down him. We spoke at length with both doctors about different ways we can try to get him to eat more calories. It is SO extremely opposite of how the rest of us need to eat. Ugh.

Now... about the tonsils. It is looking like both docs are going to be on board with trying CPAP for now and hoping the PAH will improve enough to make him a better surgical candidate. For now, he will keep his tonsils until we get his lungs in better shape.

Good news is we don't have to go back to UF until January unless there are any complications with the new meds. YAY!!!!

That's about it for now. We hope all of you have a great weekend!!!!

UF This Week

2009-11-16T10:50:00.004-05:00

This week we go back to UF for Joshua's monthly appointment. We most likely will be discussing possible surgery. I really don't think his cardiologist will allow him to have surgery but we'll find out this week.

Please say a prayer for me as I will be taking him by myself this month. My sister has been to EVERY appointment with me through all of this. She's my comfort and security blanket, an extra set of ears and eyes. I know I can do it alone, it's just better with her.

Thanks for all your prayers!

Pumpkins!!!!

2009-10-29T09:48:00.005-04:00

This past weekend we went to our local pumpkin patch where we go every year to carefully select our pumpkins for carving. Okay it's not really a pumpkin patch in the middle of the city, it's at a church. They put hay and pumpkins in their lot. It's the closest thing we're going to have to a pumpkin patch without having to drive 30+ miles.

Anyway... we brought them home Sunday and then waited until Tuesday to carve them. For one, Dad would be home (the only night of the week he's home this week.) Second, we learned very quickly living in a sub-tropical climate, that you should not carve a pumpkin too far out from Halloween or it will rot, cave in, and mold VERY QUICKLY. (I'll spare you those pictures.)

So... here are some pictures of our evening.

Micayla's is on the left, Alex's in the middle (he tries to make the mean one every year), and then Josh's on the right.

Alex and Micayla like to carve their names or initials in the backs of theirs. Just in case we happen to forget who made what!!! Josh didn't want to.

My favorite thing about pumpkin carving is I score the "lids" of the pumpkins and we put cinnamon and cloves on them. When they are heated from the candle inside, it makes the front porch smell really good!!!!!

We hope you have a safe weekend. For us it's just about pumpkins and candy!!

A Funeral

2009-10-29T09:36:00.003-04:00

Have you ever had a funeral for a pet? Well, we did two weeks ago. I'm slightly behind in my blogging. It was a sad day for us as we buried Micayla's hamster, also known as Hamilton John Gentges. (I know, I know.) We called him Hammy.

She's had him for almost 4 years so it was slightly emotional.

Thankfully, she has wonderful brothers who were there for her since Dad was out of town. (Why does he get to miss these events???)

Here Josh and Alex are preparing the hole...

Micayla had decorated the box for Hammy. His full name is on the top.

We were so happy when her friends came over to bring her flowers and cheer her up!!! I was especially happy they were able to be there for the "funeral"!!!

All done and over!

So here is some dialogue we had after he died....

Micayla: "So Mom, do you think Hammy is in heaven?"
Me: "Well honey..."

Micayla: (looking at me with big sad eyes)....
Mom: "I think that God wants us to be happy in heaven and God made hamsters. So I believe if it makes us happy and He made it then it will be in Heaven."
Micayla: (big smile) "Thanks Mom. I think he will be there too."

Oh geez. I have no idea if pets are in heaven but I believe OUR pets will be!!! It makes me happy. I need happy thoughts right now so there.

UF Yesterday...

2009-10-20T13:38:00.003-04:00

So we had our appointment with ENT yesterday. He suggests the best treatment for Joshua would be to take out his tonsils. HOWEVER... it would require cardiology and anesthesiology agreeing that he was able to handle having surgery.

We spoke last month with our cardiologist and he said Joshua isn't the best surgical candidate but sometimes the results of surgery would outweigh the risks.

So... we'll wait to see what they have to say and then make a decision on the best treatment.

We also discussed yesterday using CPAP. The ENT said CPAP is a treatment but since Josh is so young and thin that the surgery may be a better option. Having to sleep with a CPAP mask at 19 is a lot and is not a permanent fix. We're not sure surgery would be either, but we'll just have to wait and see.

I'm not sure what I think. I can see both sides of this. I'll be better able to decide what I think once we speak with Dr. A and the cardiology team. Our next appointment in Gainesville will be next month.

Thanks for thinking about us and checking our blog.

Tomorrow...

2009-10-18T21:38:00.002-04:00

Tomorrow is our appointment in Gainesville. We are not seeing the normal clinic this month. They have given us a two month span this time!!

We are however still going to UF to see an ENT for the first time. After seeing the pulmonologist last month, they decided they want us to see an ENT regarding his tonsils. They are quite impressive and under normal circumstances, would probably be taken out.

However, I am under the impression Joshua is not a surgical candidate so we'll see what they have to say.

This appointment will determine what we'll do with the CPAP treatments as well.

Thanks for your prayers! Each trip to UF is just a reminder of reality with this disease. Have a great week!!!

Joshua's Birthday

2009-10-09T16:42:00.005-04:00

Today is Joshua's 19th birthday! I really can't believe he is 19, (or that Brandon has been on his own for almost a year, and that our youngest son is almost a teenager or that our daughter is almost 10.) It makes me feel old.

My favorite memory of Joshua was when he was a tiny little guy... (well, there are several but I'll tell you this one for now).

We were at Memorial pool in Jefferson City, MO. Joshua was not a swimmer yet and weighed in at a whopping 26 pounds. He was about 5 years old. As I would walk into the pool with him, he would climb me like I was a tree and then hang on for dear life. I could literally let go of him and he would be attached to me like a baby monkey. He was having fun, but totally not trusting of himself in the water. It was a good day with good memories. He has always been such a sweetheart.

He is still our little monkey. Although he's taller than me now.

My favorite thing about Joshua has to be his heart. He has such a H U G E heart. He loves people. He wants everyone to be happy. He'd give you everything he has if it would make you happy.

It's the things I love about Joshua that drive me crazy too. Let me show you some examples... He has been given a handful of detentions at school. They have been for things like, being tardy to class because he was holding the door open for everyone, letting someone copy his homework, or letting someone have his phone to use during class. Always helping someone else, or at least thinking he was helping but at the same time, getting himself in trouble.

He is a great son. We are so proud of him. He is going to graduate in May. I can't wait. He can't wait either. He plans to go to FSCJ (Florida State College Jacksonville) to get his degree in ASL and deaf studies. He's gonna do great!

Here is a recent picture I tried to take during our church service. Josh was asked to sign a song in church. I couldn't look at him without crying. I love watching him sign. He truly loves it. Of course he does... he's helping someone.

A few more favorite pics I've been wanting to post are of him teaching at our VBS this summer. He was a helper during story time. Perfect for him.

Happy birthday Joshua. We love you so much!!! I pray for many more celebrations of you getting older!!!

Trip to UF and Updates on Joshua

2009-09-25T13:33:00.004-04:00

We had our monthly trip to UF this week. It was a good visit. Most of the same but a little deeper conversation.

Joshua's pressures look the same still. There is still no improvement on the meds. They are going to give him two more months on the meds he is currently taking before adding a new one on top of it. The new one they will add in two months, if things don't improve, has just been approved by the FDA. I don't remember the name. It will be taken 4-6 times a day and is inhaled.

We have a hard enough time getting his three times a day meds in so we are also getting him a medical watch. It's one he can set alarms to (like his cell phone) but it has 10 alarms on it. I'm going to set one of them to say "give your mom a hug" or maybe "unload the dishwasher" or possibly "start your laundry". Hmmm.... many options here!!!

No really, I am hopeful the watch will be a better reminder than the cell phone. If he doesn't hear the phone alarm, for whatever reason, (usually it's in the car or needs to be charged, or he's outside), then he doesn't remember the meds.

Joshua has been having nose bleeds almost every day the last week and a half. I took him in to see an ENT here in Jax. They said he has a "small bleed in the lower, left turbinate." Did you know we have turbinates?? He treated him with Affrin hoping to get the vessels to constrict and said to watch it and treat as needed and then start moisture therapy once it stops for three days. Then we are to follow up with him in 4 weeks. Well, we haven't had three days yet so we are going to start the moisture therapy anyway.

We also saw a pulmonologist in Gainesville for the first time. Dr. S was great. It was quite a L O N G visit. It seems to take F O R E V E R to give someone new all of Joshua's medical history. Not to mention all the copies we have of labs, meds, tests, etc. We were in her office for 3.5 hours. UGH!

So... after speaking with the doctors at UF, they want him to go back to ENT before the 4 weeks. They want us to discuss POSSIBLE removal of the tonsils. The risk may be too high for Joshua to have this done. Pulmonary hypertension patients are not great candidates for any type of surgery requiring anesthesia.

For now we will wait for the appointment to see the ENT and then the three docs will get together and discuss what will be best for Joshua.

Also, we are holding off on the CPAP with oxygen until we see the ENT.

One more thing... could you please pray for a sweet family in our church whose 2 year old son passed away. He had Leigh's disease. It's a bittersweet time for us. We know baby Mack is able to run, laugh and play now, but we sure wish we could see it ourselves.

Thanks so much for your continued support and love of our family.

Updates soon...

2009-09-22T16:32:00.002-04:00

We have had so much going on and there is plenty to share and post on the blog. I haven't had time to download pics yet and I hate posting without pics.

So.... stay tuned... updates soon.

We Didn't Have Enough Going On??

2009-09-03T19:51:00.003-04:00

We came home last night from the hospital. But it wasn't UF. This time it was Baptist Hospital at Jacksonville Beach.

AND this time John was the patient.

He had a TIA (Transient Ischemic Attack).

What is a TIA you ask?

Well, it's a "warning stroke" or "mini-stroke" that produces stroke-like symptoms but no lasting damage. Thank God.

He was teaching his men's group at church Monday night. Thank God one of his friends texted me and told me to check on him. I know he would've never said anything. Why are men like that??

We took him to the ER, kicking and screaming, and they admitted him for two days. He is fine now, just a little concerned about how often he will get to have his double cheeseburgers??? Hmmm...... just kidding. He knows we have to change some things up.

I tried to take pictures for the blog but he wasn't having it.

Please pray that together, and as a family, we can learn to become healthier. It's gonna be an interesting ride.

Blessings!!!!

Back from UF

2009-08-27T14:53:00.005-04:00

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.

Senior Year, UF Again, and Prayers Please

2009-08-24T20:23:00.004-04:00

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!!!

Family Travels

2009-08-19T17:58:00.017-04:00

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

2009-08-10T20:33:00.005-04:00

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

2009-08-01T13:38:00.010-04:00

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....

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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 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!!!!

2009-07-20T18:32:00.008-04:00

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...

2009-07-08T11:55:00.008-04:00

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

2009-07-02T21:41:00.005-04:00

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

2009-07-01T16:25:00.003-04:00

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.

Aaaahhhhhh Silence....

2009-06-29T12:20:00.004-04:00

It was a beautiful sound... the sound of silence. In my house. Can you believe it? It doesn't happen often.

We had a wonderful evening last night. John's mom and dad are in town. They took the kids, overnight, to a hotel right on the beach last night. It had a great pool with waterfall, and you could walk straight out to the beach from the pool, but yet it was private enough also. The view from the balcony of the room was beautiful. You could see the pool and the beach, including the dolphins out there in the ocean.

John and I left early evening and came home after stopping off for some ice cream! Yummy!!

I wasn't sure what to do with no kids in the house! Such a strange phenomenon.

It was nice to go to bed without having the 100 question routine, I need a glass of water, and the typical "I want a hug from Alex but he won't give me one" routine.

It was also nice to wake up and be home... alone. That never happens.

Don't get me wrong... I already miss them and am ready for them to get home, but it was so nice to have a peaceful, silent house this morning.... all to myself!!!!

Aaaaaaahhhhhhhh....... wonderful.

Thanks Henri and John for taking the kids for us. It was just what we needed, and we didn't even know it.

All Better!!

2009-06-26T09:28:00.004-04:00

Well, that last post was a little ~~jacked up~~ lame. I am sorry for sounding so BLAH there. I shouldn't write posts when I'm tired and crabby.

We are all doing much better. Thank you for your prayers. I'm so glad we are on the other side of this flu. It was not fun.

John had his MRI and goes back to the doc Tuesday. The only thing he could get the tech to say was "your not gonna be happy." Lovely. I'm gonna go out on a limb and guess that he's gonna need surgery for his torn rotator cuff???

Good times. Keepin' it exciting!

We are expecting John's mom here today. Looking forward to having her here. The kids are ready to get out and about.

I think we've inhaled all we can of Lysol and bleach. It's time for our summer to finally start.

I hope you're enjoying yours!

Not Going

2009-06-24T22:26:00.003-04:00

Well, we are not going to Gainesville now. They called back yesterday and said they would rather us not be there. It's not safe for their transplant patients. Figured that.

I'm not sure what it is with all these appointments, but when they don't go off as scheduled, it really bums me out. It brings me down. Throws me for a loop. I never realize how much I am anticipating these appointments until they get rescheduled. I'm so glad God is not surprised. That He's not bummed out or down. Although, he probably is with me when he sees my crappy attitude with it all. I need to examine that.... later.

The funny thing here is ... I'm not a scheduled person. We tend to fly by the seat of our pants. It usually works for us. However, I don't like flying when it comes to Joshua's appointments. I want to know when, where, how, why, etc. And then I want it to stay that way.

Once again I'm reminded that it's not on my time. Darn it. Thanks God.

I've been having bouts of insomnia lately, along with having the flu. I know it's not supposed to be about me but this is my blog and I can make it about me right now. Thanks for tolerating it.

We've been rescheduled for July 2nd in Gainesville. I pray we're all well for that appointment. Please pray we are, otherwise, they may just be admitting me while we're there.

I will try to go back to bed now. Everyone is asleep. Even the dog. Maybe I should stay up and enjoy the peace and quiet. Do you know how crazy one can get when they are "quarantined" to their house for two weeks??? You don't want to. Trust me.

Tylenol PM???? Hmmm.....

And Going...

2009-06-22T15:26:00.004-04:00

Went to the doctor this morning. He tested Brandon, Kristen (his girlfriend), and myself for the flu. All three of us came back positive. LOVELY.

He put all of us on antibiotics to ward off any secondary bacterial infections, as well as treat Brandon and Kristen for the flu. (The rest of us have already taken the meds for that.)

The kids are all feeling good, which makes it even harder to keep them in the house. I on the other hand, am tired. So we have another week of being stuck at home. Time for a good project, right?

This most likely means that we will not be able to go to Gainesville for Joshua's clinic day Thursday. They will be calling me back tomorrow to let me know for sure. Seeing how the clinic is also the transplant center, I doubt they are going to want us there.

LOVELY.

JUST WONDERFUL.

SLIGHTLY FRUSTRATED.

I know God is in control. There must be a good reason for all this, right? My plans are not his plans, right?

Please just pray for all us to feel good, and be done with it. Lord knows I'm so done with it.

And Going....

2009-06-20T09:21:00.004-04:00

Well, I think it's getting better actually, and I'm a little afraid to even say it but... there have been NO fevers in the house for two days. Whhooopppiiieeee!!!!!!

Everyone is feeling better although we're all getting a little stir-crazy. This has been the ONLY time I think I've ever been thankful for video games or television.

Thank you all for praying for our family. It really is the best thing you could do for us.

Please also include John in your prayers. After much conversation, I finally got him to the doctor, an orthopedic surgeon. He has an MRI Tuesday to confirm what I've been thinking all along, (just call me Dr. Mom), but I think, along with the doctor, that he has a rotator cuff tear with a labral tear as well. WONDERFUL! More doctor appointments.

He jokingly asked me if I was going to start a binder for him like I have for Joshua. I told him he was on his own. I can only manage one binder at a time!!

Thanks again for praying. You're comments really do boost us up and make Joshua feel really loved.

It Just Keeps Going

2009-06-17T20:15:00.006-04:00

We just didn't have enough going on. The dust was beginning to settle. And POWWW....

Alex has tested positive for Influenza A. LOVELY!!!!! Can someone just shoot me now?? (Just kidding there, please don't - my kids need me!!) This is what happens when you send your son away to camp for four nights!

Of course, this is not such a big deal unless you have an older brother with health issues, a mom with a compromised immune system and a little sister at home.

Our pediatrician has put us all on flu meds. Only Alex had symptoms yesterday: fever, congestion in face and chest, cough.

He's doing such a fine job of sharing... now Joshua is running a fever!! I was on the phone FOUR times with UF - Gainesville yesterday between making sure the meds are okay for Joshua to take and asking a hundred more questions. The meds they gave us are inhaled so it's even trickier for someone with lung problems.

I was about ready to unload on someone yesterday. Be thankful you weren't here. It took me almost three hours and three different pharmacies to get our meds. Not to mention a payment that about made me fall over. However, I shall not complain about the money. The little bit I spent yesterday doesn't compare to the price we could be having to pay for Joshua's Tracleer.

{Little side note here: I also had the joy of spending 53 minutes on the phone with the nice lady from our insurance company yesterday. They were trying to update their records with all of Joshua's health info. They also called to make us aware just how much the Tracleer costs. I thought it was $3,000.00. WRONG. She let me know it's exactly $5,120.26, per month. GEE WHIZ!}

So my little check for $135.00 seems quite small now doesn't' it?

Joshua is so congested right now. I am giving him Robitussin, but he can not have anything with phenylephrine. It is a stimulant that can make his heart race, so thank God they make one without it. Just another thing to be checking for and putting in the memory bank. Which by the way, is about maxed out with information.

So far Alex and Joshua are the only one's with symptoms. Hopefully it will stay that way!

So... if you wouldn't mind, please pray for this flu to get out of our house and for us to get back to whatever normal is around here. I'm not sure I know.

A Visitors Perspective

2009-06-15T21:16:00.005-04:00

We have an awesome church. You can check it out at epcjax.com. Please come check us out if you don't have one.

Joshua and I work on Wednesday nights in our youth group. I've been up there almost three years. It's challenging but I find more and more that I really do enjoy it. I'm the candy lady. I sell candy to the kids in our "candy shack" and spend time talking to them and asking them about their lives, trying to engage them in conversations. It's fun. The money we make from the candy sales helps support two children in Lebanon that our youth group "adopted", or sponsors. It's the only thing that keeps me from feeling guilty for pushing sugar to these kids!!

Joshua is the greeter. He's perfect at this job. He has taken it upon himself to bring a question every week to ask the kids as they enter the loft. It's usually a "which do you like better" question. Chocolate or vanilla, dogs or cats, Batman or Superman, and it gets a little more strange here and there.

We love our church.

Through the summer months, our wonderful youth pastor has decided to give the kids a chance to hear from their peers. He's asked different kids to pick a verse out of the bible that means something to them and spend 5-10 minutes talking about it with the group.

Joshua picked the first week to do this. He also picked June 10th since it was Brandon's birthday. I was so proud of him for not even hesitating to do this, to teach in front of the hardest group there is, your peers. He is so strong in his faith and his walk with our Lord and Savior that I never saw him get nervous or anything.

John and I were so proud of him. We couldn't listen to him without tears in our eyes, but it was wonderful to listen to him challenge his peers, as well as ourselves, to be still and know that He is God. (psalm 46:10).

There was a visitor there that night. I didn't remember ever seeing him there before. As Joshua started speaking, he was listening intently. I was sitting right next to him. He had a bandage on his arm. When it was time for prayer requests, after Joshua spoke, he introduced himself and said he was a visitor and was a missionary in Cypress. He's in his mid 20's. He asked if we could pray for Joshua. I was a little skeptical at first. I've had a few strange experiences from "visitors" who want to speak up and take the floor. This guy wasn't trying to take the floor but I felt my "momma bear" instinct rise up and want to protect my son from anyone who may be "off". It's scary to let someone you don't know anything about, to pray for you. Much less your son.

It was perfect. He was spot on. He was truly interested in Joshua and God using him to perform a medical miracle. He encouraged the kids to all pray together for Joshua at the same time. Reminding us that God hears all of us. It was a great idea, especially for the kids who aren't yet comfortable praying.

I found myself being very thankful for this visitor. His name just happened to be ... Josh. Josh Gardner. A missionary in Cypress.

Pastor Bruce also prayed over Joshua. It was powerful. I'm so thankful for him.

We love our church.

So... here's the reason for the post... today I received an email from Pastor Bruce which was sent to him. It was sent to him by Josh Gardner's friend, who thought Bruce might want to see it. It's a note he posted on his Facebook page.

I asked Josh Gardner if I could share it here with you all. It's powerful. It's emotional. (Consider yourselves warned.)

Here it is. Thank you Josh Gardner. We loved having you in our youth group. I'm so thankful you had the boldness and courage to speak up, and pray ... to pray for our Josh. I love the family of Christ.

Here is the note he posted on his Facebook. I hope you can see a glimpse of my son. He's awesome:

Thursday, June 11, 2009 at 4:31pm

June 10th

I was in Jacksonville this past week. I went to a youth group for the first time in at least 10 years or so. It did not disappoint. I almost forgot how awkward these events can be, and how fun. I met the leader first thing...his name was Bruce...we share the same alma mater, and I am not sure if thats why I liked him right away or not...could have been the handshake I guess, but I don't think so. He had great control of the kids, and by control...I mean he had a confidence...a confidence that made kids listen to him. I knew it was gonna be a good time when he said, “We have visitors today...be sure to introduce yourself to them...and by introduce yourself I mean go up to them and tell them your real name.” Its instructions like this that really make me enjoy kids...cuz thats just funny...that there was a time when people were giving made up names to one another...only kids do that.

Immediately we started up a knockout game on the bball court. Inwardly I was really torn....because knockout is a game I always feel obligated to win....no matter who is playing....boy, girl, or queen of england...I am gonna do my best usually, but I am new to this place...maybe best to sit it out and let someone else get the win I think. Its of note to mention I just got stitches out of my elbow....so I went from...”i shouldn't play I am new...to...i shouldn't play I just got stitches out...to...I'll play and just use my left hand...to...I am gonna win this thing...”

I won three games

Now, of course I acted like I wasn't altogether that pleased....(but I still have it...hurt elbow and all.) but not acting happy is the appropriate response for a 26 year old man who is beating up on highschool boys and girls in knockout. Once I got too sweaty...so sweaty that it looks like I am trying way to hard to win...I stopped...and considered it a good start to the youth group night.

We next had the traditional lesson time after a half hour of sweaty activity...I can't really tell you what I was expecting...but certainly it wasn't what I got. We sat in a circle and Bruce...the leader...said confidently that the kids always hear from him...and how this week and this summer they will hear more from each other as he lets them lead. That might have been when I really really liked him. A good leader empowers others. He then introduced the speaker for the night...as the rest of the kids got quiet...his name was Josh.

Josh could not have been a day older than 15...okay maybe 16...whats important is that he's in highschool. Josh was not this overly impressive looking character. He was of average height...a very thin build...glasses...brown hair...and very meek in his demeanor. He was a smiling kid...I saw him when I came into the room...smiling away. He looked like the kind of kid that had probably never said a mean word to someone in his life. He began to speak. Apparently...Josh is a pretty sick kid. He began his time by saying...

”just today...I have discovered that I am terminally ill...and my life expectancy has been shortened because of a serious heart condition...please open your bibles to Psalm 46...”

I didn't say it out loud...but I inwardly yelled....O DANG...this isn't gonna be some lame last minute lesson. I began to think to myself...a normal kid...would not be doing this. A normal kid wouldn't be here the day he found that kind of information out...there is just no way. I decided right then....that I really love this unnormal kid right here. He began to talk about the love of God. How God is in control of his life. He referenced the verse...”Be still and know that I am God”...and when most people stop there...he kept going on and on about how God will be glorified in the nations too.

He had command of the room. I began to just flat out admire this kid...and I in a way...felt bad for the other kids in the room...who might think they will always hear a great testimony like this one...some might not ever get a chance to hear someone of such power speak again. This kid just kept talking about the love of God...and how much he trusts God...and how one day he will have a new heart with this confidence that was other wordly. There was this spoken and implied thankfulness coming out his mouth and it showed on his face as well. He was so thankful for his parents...for his friends...and for this special time he got to share. Without shedding a tear...he shared. You would have thought he just won a trip around the world or something. He had joy and peace that passed my understanding.

He talked about how God gets glory no matter what...even in his own life. No matter what. He mentioned 9/11 and how more people prayed on that day...than the previous five years according to some poll. It was good...really good.. and he ended just like he began....smiling. I wanted to cry and applaud honestly...but then I just wanted to pray for this kid...this kid terminally ill...who didn't ask for anything yet...i wanted to demand we pray for him...and then i wanted to wait to see if he'd ask...so i did. The next thing that happened was prayer requests. Bruce...took requests from anyone who asked for prayer. I began to think...how do u ask for prayer when the elephant named terminally ill disease is in the room...these other kids probably think their problems are too small now...

Josh then spoke up to say....”Not every request has to be a big one you know....you can pray about anything to God.” Everyone really began to ask for prayer after that...sometimes multiple times. I really did almost cry then...but I was just so bloody in awe of this kid with seemingly not a selfish bone in his body. I kept wondering if he would ask us to pray for him...for he hadn't yet...as I am thinking this he raised his hand again...and I thought “finally”...then he says....my friends mom just died of leukemia...can we pray for that family.

I had been quiet this whole time...and then it wouldn't leave me...and then Bruce said i think God would get more famous if he healed you completely...and I am going to pray for that. I couldn't have agreed more...and then the moment came...and we all prayed for josh that instant. I would not be surprised at all to find out Josh is healed. Not because of me...but because of those kids prayers...I think God listens to kids...maybe more than prayers of other people. This little kid that was thinking of others above himself, and I think God listens to kids like that especially. I am not even entirely sure it was on his radar at all to pray for himself. Afterwards he even said to me, “ I didn't deserve that”. All I could think was...who is this kids parents so I can shake their hand.

Deep down I think God will honor those prayers for a kid who would honor God no matter what happens to himself. What a great kid! I hope deep down he will be a medical miracle. Honestly he is what makes Christianity so appealing to me...because either he has completely flipped his lid and believing a worthless fairy tale....or he is the most sane person in the room with a great and mighty destiny. He could have just as easily blame God for his heart...and yet...he doesn't and almost couldn't. He just kept on boasting about how good God is. Unreal honestly.

I am thankful to Josh. That was an awesome night. I am thankful to Bruce too...who allowed it to happen. I wish you could have heard this kid...he is class.

Brandon

2009-06-11T08:16:00.005-04:00

So.... Brandon is officially 20 years old. That seems so strange to me, not possible, not yet anyway. I mean, I'm only 28. Right?

Our oldest boy turned 20 yesterday. I worry about him. He's out on his own, doing his own thing, keeping his own hours, and doing his own laundry!!! The latter is the only one I'm excited about.

I know he loves this time in his life. No parents around to tell him what to do. Friends galore. Staying up late. Hanging out with his friends til the hours come when nothing good can happen.

He's paying his own bills, working full-time, cooking his own food. Or not. I think he frequents the drive thru?? He can cook though. He's a great cook actually. He learned a lot from his Dad. hee hee

I'm proud of him for taking the big, giant step into the world and trying things on his own.

Although I just have to share this picture with you...

This is arm after his wreck last week. His knee looks like hamburger... wanna see.....

One thing to consider... these pictures are about three-four days AFTER the wreck and AFTER it's been treated and bandaged for several days.

I know... I can't believe I'm putting these on the blog either. Maybe he'll look at them and realize he doesn't want a motorcycle anymore???

I love this boy. He makes me laugh. He has a great sense of humor. He loves to joke around.

He can be really serious too. He loves to talk late at night, after we've gone to bed!! (Secretly, I miss those late night conversations when he would bare his heart.)

He wants to rescue the world from all evil. He hates injustice. He's handsome. He's kind.

We love this boy, our son. Although, he's really a man now. Strange. Too fast.

Happy birthday honey. We love you so much. Be safe.

Meds

2009-06-10T17:10:00.002-04:00

The meds arrived this afternoon. He starts them tonight and then we travel back to Gainesville in two weeks for a clinic day in the Pulmonary Hypertension Clinic. They will do his 6 minute walk test, lab work, EKG and ECHO. Looks like these will be the monthly visits we'll do.

Thank you for your prayers and love for our family!

GOOD NEWS!!

2009-06-09T09:19:00.005-04:00

GOD IS GOOD! Joshua's medicine in on the way!!!!! We've had our phone counseling from the pharmaceutical company and they have all Joshua's info so they are Fed-Ex'ing (can I verb that?) the package overnight. We'll have it tomorrow for him to start his meds.

We are hoping these meds will improve his ability to exercise, improve shortness of breath, and stop this disease from progressing.

He starts on half a dose, then will go to a full dose the next month.

They don't expect to see results until he's been on the meds 1-2 months.

He will have monthly blood tests to check liver function. These have to be turned into the drug company before they will send the next months dose. I'm thankful they do reminder calls 2 weeks before he is to run out of pills to help us remember to get these done and get the next month's meds on the way.

Thank you for your prayers. So far our insurance is covering this expensive medication (average $3000/month)!! Praise God!

Please feel free to leave a comment of encouragement for Joshua if you'd like. You can also email me if you'd like. My email is under the About Me section in my complete profile.

Proverbs 3: 5-6 "Trust in the Lord with all your heart and lean not on your own understanding."

We're Home

2009-06-04T10:35:00.003-04:00

We're home and Joshua is fine. We're all exhausted but hopeful. Joshua was able to take off his bandage last night which made him happy. He was tired of that compression bandage on his groin.

We're in a waiting stage right now for the medicines to be approved and started. It's a long paper trail since these are not drugs you can just go get at Wal-greens. It takes a lot of paperwork from the hospital showing necessity, which they have plenty of. Then we'll get them directly from the manufacturer or center that sends them out.

We visit our pulmonologist here in Jax next week and then the cardiologist here (the fantastic doctor here that found the PDA when everyone else missed it) in 2 weeks. Hopefully we'll start the meds in two weeks. We will travel back to Gainesville in a month.

More to come on Joshua but that's it for now. The brains are a little fried with info overload and I want to get information out to you but please understand we're trying to figure it all out as well and I want to be able to explain it so you can understand it too.

Please keep Joshua in your prayers. Thank you so much.

Update to the Link

2009-06-03T14:53:00.001-04:00

Some of you said there were problems with the link below. It's been updated. Thank you.

Diagnosis - from John

2009-06-02T22:06:00.002-04:00

Good Evening,

Long 2 days just wanted to get this out so you all can know where we are with Josh. All I can say is WOW info over load, so easiest way to let you all in, is check out the two web sites below and we will be back in Jax on Wednesday. He's been diagnosed with Eisenmenger's Syndrome.

http://www.cachnet.org/managing_sec15.html

Treatment for people with Eisenmenger's syndrome is aimed at controlling symptoms and preventing complications. Medication is the primary treatment option. Surgery to repair the defect once Eisenmenger's syndrome has developed is not possible. Heart and lung transplantation or lung transplant are options for some people with Eisenmenger's syndrome.

http://www.tracleer.com/ This is the first drug we are going to try. May not work but have to try before moving on to next option.

JOHN!

Joshua Update Part 2

2009-06-02T17:00:00.003-04:00

We're finished with the hospital. I had very poor cell service and was not able to take calls, I'm sorry.

Joshua is resting very comfortably here in the hotel. He's doing great and in good spirits. He wants me to thank all of you for you prayers and calls and texts and concern for him. He is just so awesome to be around and has such a great spirit and heart (even with the defect!!) He is a good patient too, although he was getting quite antsy having to lay FLAT for 6 hours. UGH!!!

A special big thank you to Dan Abel for coming down and sitting with Joshua for a long time, enduring the special effects of anesthesia. Thank you Dan - you're such a blessing to us and you don't realize how much it meant to Joshua for you to be there with him and us. We appreciate you!!

There is a LOT of information to process right now. Please allow us some time to organize the many pages of notes I've taken today and I will post more once I get it all together in a coherent form.

I'll try to get it posted soon. Thanks for your patience!!

Joshua Update...

2009-06-01T17:50:00.004-04:00

Today was a good day although exhausting. We arrived safely in Gainesville and went straight into our appointments with Dr. P and the cardiology team for EKG, ECHO, and X-RAY.

Here is what we know so far...

He will be the first case in the morning. This is good news. We are to arrive at the hospital at 7AM. Our hotel is only a few blocks from the hospital.
The procedure will take between 3-4 hours. It may take a little longer since he is allergic to the blood thinner they normally use. This may slow down the passing of the catheter through the arteries.
Recovery will be about 3-6 hours. We will get to be with him during this time.
They will NOT repair the PDA at this time. He feels the pressures are too high in the pulmonary arteries and would cause heart failure. Joshua may always have this PDA since his heart needs it right now as a pressure release valve. They will not consider closing it unless his pressures can come down by 50%.
They will go through the groin for the cath unless there is scar tissue from previous procedures as an infant. If there is scar tissue, they will go through the neck.
They will do testing of the pressures in the chambers of the heart. Then they will administer different gasses to see how the lungs react to it. This will help us determine which medicines are best for him in the long run. We may not be able to start these medicines immediately because they require insurance approval as they are expensive drugs. If they are able to start these immediately, we will stay in the hospital a couple days.
The doctor feels this PDA must have popped back open sometime possibly while Joshua was still in the NICU. It's just not something that anyone would know about since it takes a while for the symptoms to appear.
The heart cath is necessary whether they fix the PDA or not. It will definitively diagnose how bad the pulmonary hypertension is and how bad the arteries and ventricles of the heart are at this time.
We WILL stay the night at the hotel either way tomorrow night. They do not want us to travel more than an hour away the first 24 hours after the surgery to make sure there are no problems with the artery they use.

We are also going to be meeting Dr. A tomorrow who is a pulmonary hypertension specialist. He will be able to give us more information as far as what to expect long term for Joshua and what his abilities are going to be.

Some of you may not realize this but Joshua gets out of breath just by taking the trash to the curb if the containers are heavy. A leisurely walk more than 100 feet makes him out of breath. These are the things we are hoping to improve upon but will never be able to fix completely.

If you have any questions, please feel free to leave a comment and I'll try to answer them on here.

Please pray for the doctors to see EXACTLY what they need to and to be able to find the perfect cocktail for Joshua to take to help his heart and lungs relax. Please also pray for me to relax and not stress out and take it all out on John!

Hug yourselves from us!

In Gainesville

2009-06-01T12:14:00.003-04:00

We are at the hospital now for our clinic appointments. I'm actually IN the room now waiting for the doctor using their computer!! WOW!!!

Joshua is doing fine and we're all highly anticipating meeting the doctors and creating a plan!!!

Love you all and thank you so much for your prayers, calls, and help with the kids!

I'll try to update more when I can.

TOMORROW....

2009-05-31T21:18:00.003-04:00

we leave for Gainesville for Joshua's clinic day, then on Tuesday they will do the heart cath. We are not sure on the time yet for the cath, but I'm pretty sure it will be before nooon.

Please pray for:
Safe travel for us and God's perfect peace before, during and after the procedure.
Wisdom for the doctors who are treating Joshua.
No complications!
Absolute certainty of exactly what is going on with Joshua and certainty & cohesiveness in how to treat it.

Please pray that all three of us can be a witness for the doctors & nurses and that Alex, Micayla & Brandon will be fine while we are gone.

I will try to update from the hospital but not sure if I'll have internet access or not.

Please also pray for Brandon. He wrecked his motorcycle today on our street! We were all outside when it happened and I can't seem to get the image of him tumbling head over heels down the pavement out of my head. It was awful. He is okay but banged up pretty bad. Thank God he is still walking and talking and alive! Pray he will get rid of that bike!

Aaaaaaaaagggggghhhhhhhhh!!!!!!!!!!!

2009-05-26T18:19:00.003-04:00

So... the doctor's office in Gainesville called and they have an emergency cath coming Thursday so we have been bumped to next week.

Office workups on Monday and surgery on Tuesday.

I'm not slightly stressed since Aunt Julie flew in today from Missouri to take care of A & M, Heather had arrangements for Grandpa, Dan (a friend of ours who Joshua requested to be there with him) had arranged to take off work, and Joshua has worked his butt off to take all of his exams today at school since he would be out the last three days of school this week!

Aaaaaaaagggggghhhhhh!!!!!!!

Please continue praying for Joshua and the rest of us as we heavily anticipate next week and adjust to this new plan.

Thank you!!

Joshua's New Pulmonologist

2009-05-23T18:58:00.002-04:00

We had our first appointment with our new pulmonologist here in Jax last week. It was a good appointment and we love our new doctor. (The insurance change forced doctor changes with two of his doctors.)

He was very easy to converse with and patient with my many, many questions. He was quite impressed with the notebook we've compiled of Joshua's medical records. You would be too if you could see it. It's quite impressive with it's many dividers for each department. Cardio, Pulmonology, Pulmonary Function Studies, Doctor Notes, Medical Records... you get the picture.

He took our "book" out of the office to go over each page and have his office make a copy of the entire thing! It was very scary to see that book leave our presence. A lot of blood, sweat, and tears have gone into that thing and I don't like it out of my grip. Unless it's in Heather's grip, and then it's okay, since her blood, sweat and tears are in that thing also!!! Thank you Heather so so so so so much for all you've done to help us!!!!! You're the best!

Back to the appointment... the kind, patient doctor went over everything with us. He is familiar with the doctor who will be doing the heart cath in Gainesville. It was just another confirmation of how wonderful this doctor is going to be.

I was slightly concerned when he said that heart failure can be a side affect of the heart cath. He explained how he thinks the procedure will go. He thinks they will try to occlude the PDA temporarily, then waiting and watching what the heart does. If he starts into heart failure, they will not occlude the PDA. At that point we will have to work on improving the pulmonary hypertension (PH) before trying to occlude the PDA. If the heart responds well to the occlusion, they will hopefully be able to repair the PDA.

Oh, and he is not really convinced there is a PDA. Now in his defense, he has not seen the pictures of it, just the report. He says this is just so rarely seen in adults, that he has a hard time believing it's really there. Little does he know how Joshua has never fit the "norm" so to speak. It's going to be amazing how much they are going to learn from our son!!

I asked if it's still a good idea to go ahead with the cath and he said a definite yes. The cath will show us 100% the levels of the PH as well as any concerns in the ventricles and arteries.

Thank you for your prayers and for so many offers of help extended to our family. We are very humbled by your love. Thank you.

Isaiah 55:8 "For my thoughts are not your thoughts, neither are my ways your ways, saith the Lord."

Plans for the Week

2009-05-18T17:16:00.003-04:00

Tomorrow afternoon we have our appointment with our new pulmonologist here in Jax. I am looking forward to meeting this doctor and getting established with him. We'll be seeing him a lot I'm sure to get the lungs to work better. We had to change docs when the insurance changed.

We're getting ready to get down to Gainesville next week. We're excited and nervous but more excited. Joshua just wants to get it done.

Before we do that though, I am leaving Wednesday for our annual homeschool convention in Orlando. I am always so excited about convention and being re-energized and refreshed with this huge task of educating our children at home. I am excited to spend a few days with my very good girlfriends and have some time to relax and rejuvenate, especially with the week we have coming up next week! The good thing is I have a pretty clear idea on curriculum changes and what we'll need so that makes it much easier!!

Thank you for all your prayers for Joshua and for our family. We are doing great as a whole and are ready to get this surgery behind us.

So Blessed

2009-05-15T16:11:00.004-04:00

I've been thinking this week of all we have going on and the many things I'm trying to juggle and keep up with. Some days I feel like I can't possibly handle one more crisis or one more request. Other days I just want to sit and cry.

Then other days, more so than not, I have peace, a peace that passes all understanding. I'm so thankful for those peaceful days. I feel like the world says I should be freaking out and worrying, not that I don't some days, but for the most part, I feel peace with all that is going on. That is only from the Lord.

Today I've been reminded over and over how blessed we are and what wonderful friends and family we have. Even friends we don't get to see often are there. Today, the doorbell rang, and Micayla comes to me and says, "mommy, there's a police officer at the door." It happened to be an old friend of ours we haven't seen for a while. He and his wife have kept up with us through a mutual friend as well as our blog. He stopped by to check on Joshua and ~~make sure we're not totally losing it~~ see how things are going with us. What a nice surprise.

Several of our friends, as well as family, have offered to help us with whatever we need. Especially figuring out what to do with Alex and Micayla while we're gone and ~~our zoo~~ Mick and Mac and Hammy. Gotta love all those pets!

As it stands now, John's sister Julie is going to come down from Missouri and stay with the kids. They are gonna LOVE having Aunt Julie here. She will probably ~~have second thoughts~~ have a great time while she's here too and most likely learn a whole new appreciation for her approaching empty nest.

Anyway, I am just wanting to tell you all today how thankful we are for such great friends and family. They are willing to do whatever we need at a moments notice. Thank you so much for loving us.

Thank you Lord for such wonderful gifts of friends and family.

Surgery Date

2009-05-03T23:38:00.003-04:00

It's very late and we've had a busy weekend but I wanted to get this out to keep you all updated.

I received the call from UF Friday! The nurse was great to work with and was patient while I asked my 1000 questions. I have a much better understanding and am excited for Josh to get down there.

We will be traveling to Gainseville May 27th for his clinic appointment. At this time we'll get to meet the doctors who will be treating Joshua. I was very happy to hear we'll also meet with a pulmonary hypertension specialist. They will do his work up, chest x-ray, etc also that day. We should be there about 4-5 hours.

The next day we will travel back down there unless we stay over night. He will have his surgery for the heart cath that day. We will not know until we speak to the doctor as to what extent or exactly what type of cath will be done. The nurse was very kind to answer all my questions about the different types, which I won't go into here, but I feel very comfortable in my understanding of them and am ready to get face to face with the heart specialist there. I did find out also that the doctor who will be doing Josh's cath is the head of the cath lab there. That makes me feel much better.

If they are able to repair the PDA, he will be kept overnight. This is my prayer. I pray they will be able to fix everything and keep him to watch it.

Lord, please give these doctors wisdom to do what is exactly right for Joshua, specific to him. I know you already know exactly what the plan will be and you have it all under control.

Amen and good night.

Patiently Waiting ....

2009-05-01T09:27:00.004-04:00

So... I called down to UF and am still waiting for them to call back. I want to make sure Joshua's file hasn't gotten lost or stuck under a pile on a busy doctor's desk.

I feel like I need to keep ~~heavily pestering~~, I mean checking on things to make sure the ball is still rolling.

I hope all of you have a good weekend!! We're glad it's Friday. We love our weekends, it's the only time we get to have all of us together at the same time for more than a couple hours.

Blessings!!!!!

Joshua's Prom

2009-04-28T14:53:00.006-04:00

Josh had his junior prom this past weekend. He looked so handsome and had a great time. Thought you'd enjoy some pics of my handsome boy....

With his beautiful friend and date, Eva... he was such a gentleman...

I can't believe he's going to graduate next year, my how time flies.

PDA ... Does Not Mean Public Display of Affection ...

2009-04-24T16:51:00.006-04:00

Well, it looks like we're taking a trip to Gainesville, FL sometime in the very near future. Too bad it won't be for a sporting event!

Joshua's doctor called asked if we could bring him in.... TODAY. Since when do specialists call and want to see you, now?

We arrived, they did his O2 stats in all extremities. Then they gave us the results of the cardiac MRI. He has an added diagnosis of Patent Ductus Arteriosus, or PDA.

You can read about it here, http://emedicine.medscape.com/article/350577-overview.

Basically, to keep it short and sweet, all infants are born with this. After 2-3 hours, it closes on it's own. It's a bypass in utero for the blood since the baby gets O2 from the placenta. Josh's didn't close on it's own and while at MU, they administered meds to make it close. Which it did.

Well, it's popped back open. Not sure how long it's been this way.

The defect connects the aorta with the pulmonary artery, allowing oxygen-rich blood from the aorta to mix with oxygen-poor blood in the pulmonary artery which means he does not have good oxygenated blood throughout his body.

Which explains a lot. Like why he has gray feet all the time, and his varicose veins, his attention span issues, and fatigue, and poor ability to exercise.

And most of all his pulmonary hypertension. Which the doc said today is "severe."

He also used words like "this is major" and "I have already sent his file overnight to UF" and "will definitely need a heart cath."

So... once again we wait and see what the next doctor is going to say. I'm thankful for our cardiologist here, Dr. J. He has his little quirks, but he is extremely thorough and was not going to stop until he had an answer. In fact, the radiologist missed the PDA. Dr. J asked for the pics from the MRI and he saw it himself. So... for that I'm thankful he has his quirks.

I ask you to please keep us all in your prayers. Josh has a great attitude about this. I know him though and in a couple days it will start to sink in.

I am going to trust in my God who already knew all this was going to happen. This is not a surprise to Him. He will lift me up when I am weak and walk beside us the whole way.

Diamond D Ranch Field Trip

2009-04-21T16:57:00.008-04:00

Today we had a field trip with our homeschool group to Diamond D Ranch. It was a beautiful day to be outside and we had a great time.

Waiting for everyone to get there...

They got to ride ponies, feed goats, rams, and catfish, see wild pigs, pet horses, go on an educational nature walk and ride upside down on a drum.

The ponies...

Feeding the catfish... Alex was SOOO wanting a fishing pole!

Then they fed the goats...

Then it was the cow's turn...

They loved the cookies... Check out that tongue....

Then they rode the drum-roll... I didn't get to take Alex's picture doing this since he ran ahead to be first... go figure!

Micayla and one of her best friends, getting ready to roll...

Upside down...

It was a great day. Micayla wanted to come home with a pony... of course!

WHY????

2009-04-19T21:15:00.004-04:00

Why do teenage boys do things that stress out their Momma's? Brandon bought this for himself a couple weeks ago and I'm just able to post about it ...

It stresses me out to no end. I'm worried about him hurting himself or worse. We have a couple in our church whose son was seriously injured in a motorcycle accident and is now in a wheelchair with a long road ahead of him and requiring his parents to care for him. Every time I see Brandon on his bike, I think of them. It makes me so nervous. Yes he wears a helmet but that doesn't guarantee anything.

I know he is so excited about the bike, but I'm not. I want to be happy for him but I'm not. I was a little happy for him watching him ride it, because he's wanted one forever, all the while jumping in my seat every time he turned. I drove behind him so other cars couldn't but I can't follow him all around town. I just pray he gets home safe every night.

I'm thankful he is in his own house now, or I'd never get any sleep!

Please keep both my big boys in your prayers, that they are safe and healthy.

Joshua's MRI's

2009-04-18T21:57:00.004-04:00

I am having computer problems so I haven't been able to update. Hopefully they will be resolved soon.

Joshua had his MRI's done this week. Wednesday they did the run off's. Thursday they did the "main" cardiac MRI. When Josh came out after THREE hours, my never complaining son says "I don't ever want to do that again." He looked spent, worn out, exhausted and was freezing. He said he had a headache and was hungry. He wasn't allowed to eat lunch so he was ready to eat. I took him to Panera's and he had soup and a sandwich. He loves his soup.

The cardiologist returned my call late yesterday. I was really hoping to hear something before the weekend. He said the run off's looked fine, there seems to be no blockage in his lower extremeties from the vericosities to the heart, but that doesn't explain WHY he has them. It was good news I guess.

We are still waiting to get the results from the cardiac MRI. Hopefully we'll hear something Monday or Tuesday.

The doc also told me there was no change in the ECHO that was done a couple weeks ago from the first one he did. He was hoping to see lower pressures but that was not the case.

I'll update more when I know more.

Thank you for checking in on Josh and our little corner of the world.

He says to be still.... I'm struggling...

2009-04-13T21:55:00.003-04:00

Today I got a phone call as I was driving home after picking Josh up from school. It was the radiology office. I know our cardiologist had a lengthy conversation with our radiologists office. He wanted to make sure they understood exactly what we are looking for. When the radiology office called last week to schedule appointments, they told me the radiologist was one of the best in the country. I was relieved.

Today, however, I'm nervous again. They said the radiologist was looking at the books for the week and wanted to know why Josh wasn't on them. (We are scheduled for next week.)

So, they called me and told me we could not wait until next week and they wanted him in this week. So, our appoinments have changed to this Wed and Thursday. Not the best timing since Josh has SAT testing this week, but we have to take it.

Please be praying for Josh to have peace during this week. The MRI's on Thursday will be two hours total. Pray he remains calm.

Pray I remain calm, and that my friends don't mind taking the other two during the testing. Did I ever tell you how much I hate scheduling things???

Also, please pray he does well on those SAT's!!!

God has been reminding me this evening to just BE STILL and know HE is in control. Not me. I didn't realize I had control issues.... hmmm......

Finally!!

2009-04-09T15:14:00.004-04:00

So finally we have some appointments scheduled. Not all of them but more of them. Also, with the new insurance we have, we have to find a new dentist and new eye doctor. Fun times.

Here is what we have so far... next Friday we have an eye appointment at 1pm. Josh is having a hard time seeing just about anything that isn't right in front of his face. I am wondering if all this other stuff has anything to do with that.

Then the following week we have three appointments. Tuesday he's getting his two cavities filled. My kids do better at the dentist then I do. I hate going to the dentist. It hurts.

Wednesday and Thursday we go to get his MRI/MRA's done. Yes, two days. They said the first day is for something, I didn't even ask, I'll figure it out when we get there. Then Thursday is a two hour MRI. The lady was really nice on the phone and said these tests are very involved and take a while. I'll get more info when I'm there but I have learned it's best to save your questions until you're in front of the doctor instead of asking the front desk appointment lady. I usually get better answers that way!!!

SO... please pray the tests all come out great and are easily read and interpreted. Pray for Josh's nerves to be calm. Also, please pray the pulmonologist can get him in before July!

And please pray he does well on his SAT's next week!

Thanks!

Frustrated... but trying to be patient

2009-04-06T07:44:00.003-04:00

"Trust in the LORD with all your heart and lean not on your own understanding." Proverbs 3:5

This seems to be my thought most of the time now. I'm growing impatient waiting on the insurance company, getting authorizations, the turn over in the insurance office so I don't get to speak to the same nurse care coordinator, and far out dates from the doctors office when I try to schedule them myself. UGH!

I know God has some good reason for all this, I'm just frustrated with it. I wish people who seem to be in positions of control with all of this felt the same urgency I did to get Joshua in to see these doctors faster. Hmmm... am I experiencing control issues??? Nah...

But I will lean on Him who will be able to calm me better than anything/one else.

Crazy Weather...

2009-03-30T09:13:00.003-04:00

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...

2009-03-24T11:28:00.005-04:00

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

2009-03-19T22:27:00.002-04:00

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.......

2009-03-06T16:29:00.011-05:00

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...

2009-03-04T21:15:00.004-05:00

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

2009-03-04T09:18:00.003-05:00

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

2009-03-01T19:20:00.004-05:00

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

2009-02-20T16:59:00.004-05:00

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

2009-02-14T13:54:00.002-05:00

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!!