Thursday, June 28, 2012

Joshua Update - Take a Long Breath Before Reading!!

Well hello!!  We are enjoying our summer and taking many opportunities to relax and enjoy life!  We hope you're doing the same!!!

I thought it would be time to write about Joshua and where we are with him. I am sorry for not keeping everyone up to date.  Sometimes we just like to do life without talking about medical junk everyday! 

The first new thing is that he started oxygen therapy this spring. Oxygen is the best vasodilator there is so we're hoping it helps keep things open for him and helps to make him feel better overall.  It was strange for me to have the oxygen tanks and concentrator in our house.  It seemed to make it more "real" that we have medical needs in our house.  Now the sound of the concentrator relaxes me!!  In the beginning he was wearing it everyday and night but then he started having his nose bleeds again.  :-(  The O2 is humidified but it still dries him out.  Now he wears a saline gel in his nostrils and that seems to help most of the time.

The next new thing is that his legs have been getting tired while working his job at Publix and his veins have been quite large and bulging.  So just this month he has started wearing compression stockings to work to hopefully help with that!  The first time he tried to get them on I hear yelling across the house, "MOM!!!  Help me!!!" Can I just say it was quite the experience helping to put "stockings" on my son!!  Those suckers do not have any give so it was very difficult!!  They are not stretchy like pantyhose!!  Needless to say, he put a hole in them before I even got there!! Sheesh!!  I'm happy to say he can now put those on all by himself!!!  Whew!  They do make his legs look like prosthetic's though!

The most current news is that he may be having surgery soon.  We saw a sleep specialist regarding options for CPAP therapy.  Joshua has not been successful with CPAP.  He takes it off at night while sleeping, when he would even wear it.  Since he is a stomach sleeper and mouth breather, it made it very hard for him to sleep.  So... we met with the sleep doctor and she was quite concerned with the structure of his jaw.  She said the lower jaw is set too far back which is probably what is causing the obstructing at night.  She thinks that when the jaw and muscles and tissues relax when sleeping, they are collapsing his wind pipe.  His most recent sleep study had 144 episodes where he stops breathing at night!  This is also why he can't stay awake if he's not standing or moving.  He stood up thru the entire visit just so he wouldn't fall asleep!  My poor boy!!  So... she referred us to a maxillofacial surgeon!! 

WHEW!   Are you still reading??? 

Well... we met with the surgeon this week and he recommends surgery to correct the jaw placement and braces to align his teeth!  I am so thankful we did not follow the recommendation of our old orthodontist who wanted to pull teeth from the upper jaw and match it to the lower jaw!!  (See... me being a pain in the butt pays off sometimes!!!) We've always known he has an overbite but I never thought it was more than a cosmetic issue. 

We are waiting for the doctors to all talk to each other and then see if his cardiologist says he is able to have surgery at all.  We were told last year that he was not a surgical candidate when they wanted to take out the tonsils.  He has since told us that he thinks Joshua is stable enough to look into that again.  I wonder if it makes a difference that it's jaw surgery and not just tonsils?  They would probably do both at the same time.  When I asked the surgeon if he's ever done this surgery on a patient with PAH, he said no.  Then I asked if he was confident that his anesthesiology team was capable of doing this he said he would be meeting with them to discuss it.  I let him know that I need him to wake up afterwards!!!  I'm willing to bet that he does too!!  :-)

Now... the last news is that in order for Joshua to have this surgery, he will need to gain between 10-20 pounds in the next few months!!  I have been pleased that he has maintained his weight (at a whopping 113 pounds) for the last year.  However, this surgery has an average weight loss of 15-20 pounds so he cannot afford to lose that without gaining it first!  

So....  if you think about us, please pray that upcoming decisions we have to make will be the RIGHT one's, that things will move easily with insurance and information exchanged between doctors, and that we can plump that boy up!!!!! I am pretty sure it's going to be a family affair!!!

Thanks for reading!!!!!!  Have a joy-filled day!!!! 

Tuesday, April 17, 2012

I know, I know...

I am so sorry that I have neglected my blog lately... or for the last year!!! New updates are on their way!!!!! Stay tuned...... time to go run the Mom taxi!!!

For now... here's Jack going for a ride in the taxi!!

Wednesday, June 15, 2011

Life Lately (Part 2)

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

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

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

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

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

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

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

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

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

Life Lately (Part 1)

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

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

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

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

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

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

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

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

Sunday, April 24, 2011

Easter Sunday

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

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

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

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

Hope you all had a great day today!!

Monday, April 18, 2011

American History Wax Museum

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

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

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

Micayla chose to be Elizabeth Dole....

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

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

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

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

Wonder who we'll be next year??

Sunday, April 3, 2011

Garden 2011

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

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

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

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

Love him!!

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

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

Stay tuned for updates!

The secret sauce....