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.

Christmas 2009

This Christmas has been a rather interesting blend of joy and sorrow.



Yesterday, my grandpa, Robert Murasko, passed away rather unexpectedly.



He had fallen last week and fractured his pelvis in two places. He was doing fine and my sister was making plans for extra help when he came home. She has been his most excellent, full time care giver for the last 4 years. I have watched her, in total amazement, take care of his every need and NEVER complain. She really did treasure the job she had in taking care of him.

The kids and I had just taken him decorated Christmas cookies and cards two days earlier. I'm so thankful for that visit now. He was fine and happy to see us.

He died from an abdominal aneurysm on Christmas Eve.

My extended family will be coming next week. I am so excited to see them but very sad for the reason.

Please hug your family and remember that above all else, Jesus Christ was born to offer us hope and salvation. He is the reason we celebrate today.

Merry Christmas!

The Gentges Family

Homeschooling sure makes life interesting!!!

One day last week while we were doing our math, Alex got up to let the dog out. It was another beautiful fall day here. Sunny, warm and a slight breeze.

Alex walked outside noticing something down by the back fence. It went a little like this:

Alex: "Mom, come here!!!"
Me: "Alex, get in here, you need to get this math finished."
Alex: "Mom, there's a bird in the yard and it's hurt." (He tells his sister to get a box.)
Me: "Alex, leave it alone! Don't touch it! Get in here." (I walk to the backdoor, really not interested in this bird and just knowing Alex is trying to blow off school.)
Alex: "Mom... please come here. It's alive! We have to do something!!"
Me: (realizing math is losing it's luster) "Alex, don't touch it."

Meanwhile, Micayla is coming out with a shoebox with holes punched in the top.

Alex: "Mom, I don't think it's hurt, I just think it's stuck."

OH GREAT. Now all math is out of the minds of my babes and they are focusing on this bird. Alex pulls the grass weeds around the bird to get it loose.

Alex: "Mom, it's covered in burrs." (The soft, flat one's that stick to you.)

We examine the bird. He's in the box. The kids get out their winter gloves so they can hold it and start taking off the burrs. (There's one reason we need gloves in Florida!!)

So I realize we now have a bird and I don't want a bird. What are we going to do with this bird??

So I get on Google and look up wildlife rescue places in our zip code. I didn't want just a critter control person. I found an animal hospital, very close to the house. They are a wildlife drop off. Who knew???

So... we ended up taking the bird, who the kids named Lucky, to the vet. They cleaned it up and sent it off to a bird rescue who, if possible, will release it back out in the area it was found. Whew!

We did find out it's a Great Crested Fly Catcher. We did research on it when we came home so the school day wasn't a complete loss was it???

And just because I know you want to see...

UF Results

Well... as Josh said... "today was a long day Mom."



I concur. He actually fell asleep on the exam table (above) while I was speaking with the doctor. She said it's not normal for him to be able to fall asleep that quickly and in the middle of the day, while we're talking. That just confirms he's not getting good sleep. I'm glad she could see that while we were there since we have noticed him being more tired lately as well.

It was a long day. We had our normal appointments in Gainesville today as well as meeting the pulmonologist again today.

First with the cardiologist... there is still no improvement with the meds. They aren't saying there is progression of the disease either so that is good?? They are going to increase one of his meds to the maximum dose. They are really hoping they can lower the pulmonary pressures. Dr. A also wants to add another medicine, Ventavis. Their website says:


"Ventavis is delivered right to the lungs—the site of the disease. Ventavis is the only inhaled PAH therapy that can be given alone to help patients treat PAH symptoms to walk farther and breathe easier with ordinary physical activities. It can also be safely used with many other drugs. Ventavis is approved for the treatment of NYHA Class III or IV pulmonary arterial hypertension (PAH).

In clinical studies, Ventavis has been shown to decrease pulmonary arterial hypertension signs including lowering high blood pressure and resistance in the pulmonary artery (main blood vessel) leading to the lungs to allow the heart to pump more efficiently."

The Ventavis is also supposed to help decrease the worsening of PAH symptoms. The hardest part of this new medicine will be that it's supposed to be taken between 9-11 times a day. YEP. You read that right. The main concern of course is compliance. We have a hard enough time doing three-four times a day each day. I just can't imagine this 9-11 times. WOW. It is also a nebulized medicine so it's a little different than the normal inhalers he's used. The doctor did tell us if we can at least get 6 in that will be good. We're going to try our best. A nurse will come out and show us exactly how to use this medicine and it's nebulizer.

Another issue that was brought up is that Joshua is still losing weight. Although this month he only lost half a pound, compared to two pounds last month. The half pound is not horrible but it's the wrong direction. I was disappointed because I really thought he was going to gain this month since we really made an effort to get more down him. We spoke at length with both doctors about different ways we can try to get him to eat more calories. It is SO extremely opposite of how the rest of us need to eat. Ugh.

Now... about the tonsils. It is looking like both docs are going to be on board with trying CPAP for now and hoping the PAH will improve enough to make him a better surgical candidate. For now, he will keep his tonsils until we get his lungs in better shape.

Good news is we don't have to go back to UF until January unless there are any complications with the new meds. YAY!!!!

That's about it for now. We hope all of you have a great weekend!!!!