Friday, January 22, 2010

Do You Need A Laugh??

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

Thursday, January 21, 2010

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!!

Saturday, January 16, 2010

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.

Thursday, January 7, 2010

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.