I know - it's been forever! I do not even know where to begin. Truly...no news is good news around here. We are on a pretty normal weekly routine and our summer weekends were spent out at our family cabin. Needless to say it was a fantastic summer. It is hard to believe September is here. This month sticks out to us like a sore thumb. Almost a year ago our lives changed forever. For some reason my anxiety level has heightened even more with the start of this month and flashbacks are present again...especially the beginning days of our journey. As much as I really do not like to dwell on the past, it definitely haunts me from time to time. I never want us to go back there. I fear it everyday.
BUT, then I bring myself to reality. Nolan is doing amazing. I mean, if he didn't have that NG tube in his nose, I seriously would never have guessed this little man has had a heart transplant. He is cruising...really ready to walk any time now, his eating is getting MUCH better and he is drinking water like a champ. He had a routine cardiology appointment at Hershey yesterday and Dr. Dispenza continues to be very happy with how everything looks. Our next appointment is on Monday with neurology at Hershey to discuss his past strokes and the keppra he is on (which is a preventative anti-seizure med). Hopefully we can begin to wean this drug off.
Gosh, so many other things have happened, I am really not sure how to catch up. I think it may take me a bit, but I do plan on providing a little update weekly. Currently Riley is doing tumbling and t-ball, and Nolan is busy at home with our awesome nurses, PT and OT quickly catching up on his milestones. We will be getting him in soon to get his flu shot and whatever other immunizations he is allowed to receive. Because of Nolan's immunosuppression due to the anti-rejection medication he is on, he is not allowed to receive live-virus vaccines, such as measles, mumps and rubella. This also means if Nolan were exposed to any of those viruses that he can not be vaccinated for, it puts him in a serious risk of major illness, even death. (Getting on my soap box...) Take time to learn more about the importance of vaccinations for your family, friends...and kids like Nolan! http://www2.aap.org/immunization/families/faq/whyimmunize.pdf
Anyway, Matt and I are doing well, also. We are both trying to get back into a workout routine, keep busy with work and even getting out with friends. We are very fortune to have such a supportive family that allows us to get out and have some US time! We are even planning a vacation ALONE in February! Yikes!
LAST, but not least...Nolan's Heart of Steel is teaming up with Ellie's Heart Foundation and Hayden's Heart to host a blood drive on Saturday, October 18 from 10 am - 2 pm. When planning this we thought we could all be in town, but unfortunately that is the weekend of Nolan's next biopsy! Anyway, I hope those locally can make it to the Genetti Hotel and contribute to this amazing cause. I can't even tell you how many blood transfusions Nolan received while at CHP, but I know that the American Red Cross is ALWAYS desperately needing blood donors. Click HERE to sign up to donate!
Well, I am off to bed. I will post some more pictures on Facebook this week!
#nhos
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