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!!!