Friday, December 25, 2009

Christmas 2009

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

Friday, November 20, 2009

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

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!!!!

Monday, November 16, 2009

UF This Week

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!

Thursday, October 29, 2009

Pumpkins!!!!

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

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.

Tuesday, October 20, 2009

UF Yesterday...

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.

Sunday, October 18, 2009

Tomorrow...

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!!!

Friday, October 9, 2009

Joshua's Birthday

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!!!

Friday, September 25, 2009

Trip to UF and Updates on Joshua

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.

Tuesday, September 22, 2009

Updates soon...

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.

Thursday, September 3, 2009

We Didn't Have Enough Going On??

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!!!!

Thursday, August 27, 2009

Back from UF

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

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

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

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



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


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


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


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

Monday, August 24, 2009

Senior Year, UF Again, and Prayers Please

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

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

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

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


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

Wednesday, August 19, 2009

Family Travels

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


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


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


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


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


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



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


Here are some pics of the battleship tour...

The family outside the ship...


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


Gunners mate???



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



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




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



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



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



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



Monday, August 10, 2009

Joshua and John

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

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

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

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

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

Blessings!!

Saturday, August 1, 2009

UF and Perspective

So we had our clinic day at UF this week.

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


Monday, July 20, 2009

We're baaaacckkk!!!!

We are still alive. Really.

Barely.

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

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

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

Pray for her.

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

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

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

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


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

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

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

And then he even did this...


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

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

But we sure did enjoy this...



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

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


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


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

It was yummy!!

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

Wednesday, July 8, 2009

News this week...

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

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


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

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


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

Other than that we're all doing well.

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

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

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

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

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

Thursday, July 2, 2009

First Clinic Day

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

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

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

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

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

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

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

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

Wednesday, July 1, 2009

Gainesville Tomorrow

That about says it all.

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

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

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

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

More to come soon.

Monday, June 29, 2009

Aaaahhhhhh Silence....

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.

Friday, June 26, 2009

All Better!!

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!

Wednesday, June 24, 2009

Not Going

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.....

Monday, June 22, 2009

And Going...

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.

Saturday, June 20, 2009

And Going....

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.

Wednesday, June 17, 2009

It Just Keeps Going

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.

Monday, June 15, 2009

A Visitors Perspective

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:

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.

Thursday, June 11, 2009

Brandon

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.

Wednesday, June 10, 2009

Meds

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!

Tuesday, June 9, 2009

GOOD NEWS!!

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."

Thursday, June 4, 2009

We're Home

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.

Wednesday, June 3, 2009

Update to the Link

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

Tuesday, June 2, 2009

Diagnosis - from John

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

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!!

Monday, June 1, 2009

Joshua Update...

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

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.

Sunday, May 31, 2009

TOMORROW....

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!

Tuesday, May 26, 2009

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

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!!

Saturday, May 23, 2009

Joshua's New Pulmonologist

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."

Monday, May 18, 2009

Plans for the Week

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.

Friday, May 15, 2009

So Blessed

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.

Sunday, May 3, 2009

Surgery Date

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.

Friday, May 1, 2009

Patiently Waiting ....

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!!!!!

Tuesday, April 28, 2009

Joshua's Prom

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.

Friday, April 24, 2009

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

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.

Tuesday, April 21, 2009

Diamond D Ranch Field Trip

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!