Wow! Life moves pretty fast when you are living!!
The last time I blogged was on Jonathan’s Kidneyversary, July 31! It’s now fall, the leaves are changing colors, the air is getting crisper, and Jonathan has been living life.
Most recently, Jonathan and I had an amazing trip to California, where I attended a Global Genes Summit, where I learned more about advocating, and we had our aHUS Disney Conference. Connection with others dealing with the same disease as Jonathan, has begun to become an important part of his life. When he was younger, he just wanted to be normal, but now that he is older, he is finding out that “NORMAL” isn’t everything that it’s cracked up to be. Making life-long friendships with those who have been where you’ve been, really has made an impact on his life. We once again shared his story, and it was live on Facebook. You can see it here. https://m.facebook.com/story.php?story_fbid=10159430809140319&id=201231245318
I was so blessed to be able to share HOPE with Jonathan by my side.
We certainly loved being back in California.As you can see, we were able to go to Disneyland! For the first time, Jonathan was able to walk the ENTIRE park, went on rides that he couldn’t go on before, and had a great time! Jonathan also turned 25 on September 16th!! 25!! In my heart, I still see him as the little boy that would grab my hand tight, give me that sweet Jonathan smile, and say “I love you Momma”. Now, he’s a man, who is finally finding himself. ♥️
Yesterday, Jonathan had his Transplant clinic. It’s been since his Kidneyversary that we had been there! His last labs were on September 8th! He has never, in his life, gone that long without lab work! Still sporting his mask, he gets his labs done before clinic. The nurse says he has great veins! Wait, what? That is also a first! Jonathan and I both look at each other, and I can tell what he is saying with his eyes..”Did you hear that, too??” I nodded and mouthed yes! After lab draws and Urinalysis, we head downstairs, and have breakfast, while we wait for his appointment with Dr. L.
We then head to the Transplant floor, #7.
Jonathan has his vitals done.
- Blood pressure ~ 107/66
- Oxygen Saturation ~ 99%
- Weight ~ 97.1 lb
- Height ~ 4’4” ♥️
All Perfect! We wait in the room for a little and then we see Dr.L! She greets Jonathan and I with, “Hi team!” 😊
Jonathan talked about his summer, California, some unexpected happiness (♥️) new in his life, and how he has been feeling. He’s maintaining his weight, exercising, and eating healthy. But, his LDL (bad cholesterol) is still elevated, despite changing his diet. Dr. L explains that this is due to Prograf, and wants him to start on a low dose cholesterol medication, Atorvistatin. She also mentions that if his levels go down enough, he may he able to be weened off in the future. We also talk about his mouth ulcers. Yeah, I know!!! We thought we had solved that problem, but we believe they are here due to high stress levels. He is currently on a steroid dental paste, which is working great. Labs are PERFECT!!! His creatinine is 0.8, BUN is 12, WBC is 6.67!! Woohoo!
His next appointment?
JANUARY 2018! Amazing!
We are still so eternally grateful to his donor family for choosing to give life. They are in my constant thoughts. We are also thankful for our friends and family who continue to support us, cheer Jonathan on, and keeping him in thoughts and prayers. ♥️
Of course this blog wouldn’t be complete without asking those who haven’t, to please consider signing up for organ, eye and tissue donation. It takes literally 2 minutes. 💙💚💙
Thank you for reading.
Thank you for taking the time.
Much love ♥️