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.
Thursday, January 7, 2010
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1 comment:
09 is over woohoo =) What a "year" and thankfully it went by fast. Blessing to you too in 2010. Love ya!
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