Can she really be 11?

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

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




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

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

Goodbye Mick

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

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

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

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

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

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

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

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

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

We miss him.

Family Update

Can it really be that fall actually began in October in Florida?? I have been so excited that the temps have finally dropped and it's been actually COOL already! Usually we're still sweating and running the A/C in October. I hope these fabulous temps stay here. I so enjoy the cool crisp air and being able to wear my jeans and long sleeves!! We're still running the A/C here and there but nothing like we usually do this time of year!

We are in the full swing of school and really enjoying it. I've picked up a new curriculum this year for our Language Arts called Total Language Plus. It's been great for us and the kids really love it! Right now we are reading Caddie Woodlawn. It's a cute story about a girl who is allowed to run around outside and play with her brothers instead of being trained to be a "lady" and learn alongside her mother and sisters indoors. It appeals to both my boy and girl so it works well!

Joshua is still plugging along at school. It's been hard for me to not really "know" how he's doing or having dialogue with any of his teachers. He says he's doing fine. I just hope he's remembering everything. He seems to enjoy it so far. We're still trying to work out transportation for him. It's been hard for him having to rely on his parents or Aunt for a ride. He is learning how to ride his bike 2 miles to the bus stop and take the city bus where he wants to go. I'll be honest... it makes me a NERVOUS WRECK! I don't want to let him do this but I know he needs to do it for himself so off he goes! Wow... it's hard letting them go!!! Joshua trusts everyone and takes it all at face value. I just don't want him getting taken advantage of or hurt. The doctors have said they want to see what he can do physically. So far, he can ride his bike much farther than he can walk.

Alex and Micayla are doing great. They are both playing the piano and Alex is singing in a band and playing soccer. He is quite the soccer player. He loves it and has so much passion for it! He plays midfield and keeper. He is a great goalie but has been enjoying playing out on the field too! He's not afraid to go after the ball and get right in there! Micayla has become quite the pianist and will be playing in February for Federation. I can't wait!! They are both doing great with school and I love it that if they don't get an A on everything, they get very upset! Hope that continues!!!

John started a new job 3 months ago. We are thankful for the job but it's been an adjustment for him. He is walking into a company that needs to make a lot of changes with their employees. The best way to describe it would be (in his words), the lunatics are running the asylum. It amazes him that a grown man can be so disrespectful and lazy and still expect to be paid for it! We'll see how it goes. He will be taking another class and test for his fourth certification in the disaster business. Pray he does well!!

I've been busy teaching my children, being their taxi, teaching piano and violin still, and trying to do the little things I love to do. Church, friends, crochet, baking and quilting. It's crazy but I wouldn't change it.

Please hug your family tight! If you haven't singed up to be a donor yet, please do that too!! Go to www.donatelife.net and sign up! It's quick and easy! We thank you!!

Blessings!!!

Update on UF Visit

After many hours of waiting, we had our appointments with Joshua's cardiologist and pulmonologist. We usually don't have to wait hours like we did this time. We understand it happens but it sure is no fun. Although, we have a great social worker who gave us meal vouchers which paid for lunch at Subway downstairs while we were waiting for the doctors!! Thanks Mary!!

The main topic this visit was compliance. Joshua has to decide whether or not he wants to continue treatment. That may sound shocking to you but it is where we are right now. I/We cannot want it for him. He has to want it for himself! He is frustrated with taking meds and all of it really. There are days when I wonder if he's just given up. The medicine is very, very, very expensive and if he's not going to take it then we don't need to be getting it. Thank God his insurance pays for it but it's still not right to get it and not take it.

We've had some long talks. Basically, I think he has gotten hung up on the word TERMINAL. Sure, I was hung up on it too for a while. That's a tough pill to swallow. But... I've joined several PH support groups and I really honestly feel like he could live well into his 40's or 50's IF HE TAKES HIS MEDICINE. We're all going to die and none of us know when that will happen so we need to live life to the fullest!!

So... we're on a new plan in our house to help Joshua start gaining more independence and forming a plan for himself.

Please pray this goes well and he can see the positives for this medical regimen.

Hope you're all enjoying the lovely fall weather! It's actually cooling down here a little too, finally!!

Love ya!

UF Tomorrow

Tomorrow morning we leave bright and early for our first UF trip in a few months. The last two appointments have been here in Jacksonville but this month we head back down to Gainesville. He has his normal appointment which includes his 6 minute walk, labs, echo, ekg and then we meet with his cardiologist. After that we will see his pulmonologist. We haven't seen her in several months so I'm happy we'll be doing that this trip. It's an all day affair but I'm glad we'll get it all done in one day versus two or three when we're in Jax.

Although I think he seems more tired, Joshua is doing okay. He hasn't been taking his medicine like he needs to and it's driving me crazy. We've finally gotten him to what seems like the easiest regimen. All of his pills are down to once a day (we changed the meds in order to have the dosage only be one time a day instead of two or three times. It's a lot of paperwork and red tape to get him approved for the new meds.) He still takes his inhaled medicine (the micro nebulized med) four times a day but that's it.

I am trying to transition him to being responsible for his medical care and it's really really hard. At some point he has to decide he's going to take his medical needs seriously. He wants to wait until he FEELS sick. I've told him, again, that if we wait until then, we cannot reverse the damage done. We caught this early (as far as the doctors think), so he isn't feeling much different than he always has, but he's also been on meds for over a year. He doesn't seem to understand that if he stops taking the meds, he will get worse and then he really won't like what he'll need to do if he has a central line, or worse.

So.... please pray for us tomorrow if you think about it. I am hoping to have a serious heart to heart with the doctors tomorrow about all of this. It's always hard for me to do that because then they get in Josh's face about the seriousness of it, (which I know he needs), but then that upsets him. UGH!! Please pray they can stress all of it again, (repetition is necessary here), but that he receives it well.

I'm still praying God completely delivers him from all of this. I am praying for a complete miraculous healing. I know Joshua would use it to bring Him glory!!

I hope you're enjoying your fall weather, wherever you are!!!

It's That Time Again

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

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

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

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

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

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

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

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

Hope you all have a great year!!!

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

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

Uh Oh... Look Out!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

UF Visit

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

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

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

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

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

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

Blessings to you!!!

Beauty from Ashes

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

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

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

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

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

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

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

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

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

Still Here

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

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

Enjoy your summer and hug your family tight!

Mama and Daughter Get Away!!!!!

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



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



but we also saw this!!!!!


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

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


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



Then we did this...



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


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

The next morning we got ready to go SHOPPING!!


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


We saw more of these...



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


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



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

The Cake

No Words Needed

Last Week Until This...

Update... UF Visit This Week

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

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

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

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

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

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

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

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

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

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

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

Sleep Study

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

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

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

Blessings!!

Final Update for Today

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

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

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

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

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

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

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

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

Thank you for your support for Joshua and our family.

Hug each other and do something nice for someone else.

Joshua Update #2

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

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

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

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

Joshua Update

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

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

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

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

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

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

More to come.

Blessings!!!

Josh's PFT's

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

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

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

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

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

Thank you for your prayers!!!!!

Busy Week With Doctors

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

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

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

Consider yourselves hugged!

History Fair

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

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

Here are a few pics!

Alex making his backdrop:



Can you guess???



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



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

Micayla chose...







At her Missions of Charity...



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

Can't wait for next year!!!

Whew... long day!

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

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

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

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

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

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

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

Blessings~~~

UPDATE on John

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

The days events went like this...

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

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

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

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

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

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

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

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

Anyway... back to the schedule...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love ya!!!

Surgery Today

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

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

Thank you...

Update... UF Visit This Week

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Blessings~~~~
Michelle

2,779

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

2,779 miles....

That's a LOT!

Do You Need A Laugh??

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

Bad Tires On Wet Roads????

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

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



Thankful in FL today!!

Finally... some good news from UF!

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

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

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

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

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

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

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

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

Recap of 2009

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

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

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

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

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

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

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

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

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

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

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

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

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

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