I am looking at my calendar and I find it hard to believe it is January 16 already! A year ago we would receive "the call" in less than 10 days - and we had no idea. Our first Heart Anniversary is quickly approaching. We have gone back and forth on how we want to celebrate and reflect on this day. At first we we very ambitious saying we wanted to throw a party (if you know us, we like a good party!). Now here we are present day, and it's flu season. There are so many illnesses going around and with Nolan being immunocompromised, we have decided to spend it with our family. Not only does this day remind us of the challenges we went through to get to where we are today, but we also remember that a family made the decision to help GIVE us these challenges. If it weren't for them, we may have not been able to see his beautiful face and adorable laugh every day. I wrote our donor family when we were 6 months out post-transplant, and I will also send them a year update. I personally still have a tough time wrapping my head around all of this and that is really happened. It is truly a miracle and blessing. I am sad we had to go through this, but now that some of the rocky times are behind us, it really has made us stronger...I have learned a lot about myself, my husband, my family and friends, complete strangers. I do enjoy life more and I think everyone who is touched by Nolan's story feels the same. Matt and I had the conversation about what we think Nolan will be like when he is older...and to even have perspective like that is...awesome! Even 6 months ago I do not think I could confidently look that far into the future - but now, I know we can.
Nolan has had a great week! I pray and hope we continue on this course through the winter months. We are all surrounded by flu, stomach viruses, respiratory issues...eeek! Spring/summer can't come fast enough! I normally do not like to wish time away, but right now I am OK with speeding it up a bit. I am mainly concerned about keeping him 100% healthy until his biopsy on January 30. Not that I don't care if he gets sick after, I just really want him to get this biopsy done because he has not had one since July!Wednesday we had out three-month review with intervention (through the state - they provide our PT and OT services). It was a great meeting and everyone is beyond thrilled with Nolan's progression these past three months! He is actually in the milestone requirements for walking...yay! Our next biggest goal is to start broadening his vocabulary skills. Currently he only says about 10 words. Now, Nolan DEFINITELY has a language of his own, but he does need some concentrated help in this area. He will start receiving speech therapy every week and I could not be more excited for him. The past few weeks he has excelled developmentally and I am so thankful for all the amazing help he has received. So, he will still receive OT twice a week for motor skills and continue to work on eating properly, PT every other week for evaluation and work on movement coordination and now speech! My personal, ultimate goal? I want to see Nolan go to preschool at our local YMCA when he is 3! We've got some time and will get there!
That is about it. Besides routine lab work our next appointment is the biopsy! I am ready to get that done and out of the way!
Hope you all have a great weekend! Thank you for rooting for our little man!!
#nhos
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