Tomorrow...

Tomorrow is our appointment in Gainesville. We are not seeing the normal clinic this month. They have given us a two month span this time!!

We are however still going to UF to see an ENT for the first time. After seeing the pulmonologist last month, they decided they want us to see an ENT regarding his tonsils. They are quite impressive and under normal circumstances, would probably be taken out.

However, I am under the impression Joshua is not a surgical candidate so we'll see what they have to say.

This appointment will determine what we'll do with the CPAP treatments as well.

Thanks for your prayers! Each trip to UF is just a reminder of reality with this disease. Have a great week!!!

Joshua's Birthday

Today is Joshua's 19th birthday! I really can't believe he is 19, (or that Brandon has been on his own for almost a year, and that our youngest son is almost a teenager or that our daughter is almost 10.) It makes me feel old.

My favorite memory of Joshua was when he was a tiny little guy... (well, there are several but I'll tell you this one for now).

We were at Memorial pool in Jefferson City, MO. Joshua was not a swimmer yet and weighed in at a whopping 26 pounds. He was about 5 years old. As I would walk into the pool with him, he would climb me like I was a tree and then hang on for dear life. I could literally let go of him and he would be attached to me like a baby monkey. He was having fun, but totally not trusting of himself in the water. It was a good day with good memories. He has always been such a sweetheart.

He is still our little monkey. Although he's taller than me now.

My favorite thing about Joshua has to be his heart. He has such a H U G E heart. He loves people. He wants everyone to be happy. He'd give you everything he has if it would make you happy.

It's the things I love about Joshua that drive me crazy too. Let me show you some examples... He has been given a handful of detentions at school. They have been for things like, being tardy to class because he was holding the door open for everyone, letting someone copy his homework, or letting someone have his phone to use during class. Always helping someone else, or at least thinking he was helping but at the same time, getting himself in trouble.

He is a great son. We are so proud of him. He is going to graduate in May. I can't wait. He can't wait either. He plans to go to FSCJ (Florida State College Jacksonville) to get his degree in ASL and deaf studies. He's gonna do great!

Here is a recent picture I tried to take during our church service. Josh was asked to sign a song in church. I couldn't look at him without crying. I love watching him sign. He truly loves it. Of course he does... he's helping someone.



A few more favorite pics I've been wanting to post are of him teaching at our VBS this summer. He was a helper during story time. Perfect for him.




Happy birthday Joshua. We love you so much!!! I pray for many more celebrations of you getting older!!!

Trip to UF and Updates on Joshua

We had our monthly trip to UF this week. It was a good visit. Most of the same but a little deeper conversation.

Joshua's pressures look the same still. There is still no improvement on the meds. They are going to give him two more months on the meds he is currently taking before adding a new one on top of it. The new one they will add in two months, if things don't improve, has just been approved by the FDA. I don't remember the name. It will be taken 4-6 times a day and is inhaled.

We have a hard enough time getting his three times a day meds in so we are also getting him a medical watch. It's one he can set alarms to (like his cell phone) but it has 10 alarms on it. I'm going to set one of them to say "give your mom a hug" or maybe "unload the dishwasher" or possibly "start your laundry". Hmmm.... many options here!!!

No really, I am hopeful the watch will be a better reminder than the cell phone. If he doesn't hear the phone alarm, for whatever reason, (usually it's in the car or needs to be charged, or he's outside), then he doesn't remember the meds.

Joshua has been having nose bleeds almost every day the last week and a half. I took him in to see an ENT here in Jax. They said he has a "small bleed in the lower, left turbinate." Did you know we have turbinates?? He treated him with Affrin hoping to get the vessels to constrict and said to watch it and treat as needed and then start moisture therapy once it stops for three days. Then we are to follow up with him in 4 weeks. Well, we haven't had three days yet so we are going to start the moisture therapy anyway.

We also saw a pulmonologist in Gainesville for the first time. Dr. S was great. It was quite a L O N G visit. It seems to take F O R E V E R to give someone new all of Joshua's medical history. Not to mention all the copies we have of labs, meds, tests, etc. We were in her office for 3.5 hours. UGH!

So... after speaking with the doctors at UF, they want him to go back to ENT before the 4 weeks. They want us to discuss POSSIBLE removal of the tonsils. The risk may be too high for Joshua to have this done. Pulmonary hypertension patients are not great candidates for any type of surgery requiring anesthesia.

For now we will wait for the appointment to see the ENT and then the three docs will get together and discuss what will be best for Joshua.

Also, we are holding off on the CPAP with oxygen until we see the ENT.


One more thing... could you please pray for a sweet family in our church whose 2 year old son passed away. He had Leigh's disease. It's a bittersweet time for us. We know baby Mack is able to run, laugh and play now, but we sure wish we could see it ourselves.

Thanks so much for your continued support and love of our family.

Updates soon...

We have had so much going on and there is plenty to share and post on the blog. I haven't had time to download pics yet and I hate posting without pics.

So.... stay tuned... updates soon.

We Didn't Have Enough Going On??

We came home last night from the hospital. But it wasn't UF. This time it was Baptist Hospital at Jacksonville Beach.

AND this time John was the patient.

He had a TIA (Transient Ischemic Attack).

What is a TIA you ask?

Well, it's a "warning stroke" or "mini-stroke" that produces stroke-like symptoms but no lasting damage. Thank God.

He was teaching his men's group at church Monday night. Thank God one of his friends texted me and told me to check on him. I know he would've never said anything. Why are men like that??

We took him to the ER, kicking and screaming, and they admitted him for two days. He is fine now, just a little concerned about how often he will get to have his double cheeseburgers??? Hmmm...... just kidding. He knows we have to change some things up.

I tried to take pictures for the blog but he wasn't having it.

Please pray that together, and as a family, we can learn to become healthier. It's gonna be an interesting ride.

Blessings!!!!

Back from UF

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

Joshua getting hooked up...

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

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

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

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

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

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

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

Senior Year, UF Again, and Prayers Please

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

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

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

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


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