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.

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!

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.....

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.

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.

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.

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:

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

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

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!!

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

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

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

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!!

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.