Friday, January 16, 2015

Meeting Milestones

Happy Friday!

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!!


Wednesday, January 7, 2015

Welcome, 2015!

It amazes me how quickly time passes!  I always have intentions to post AT LEAST once a week, then all of a sudden two months has past. I blame the holiday madness :)

Where to start? First off, Nolan is doing great and is now (almost) 21 months old! He has graduated from fast crawling to now (clumsy) running. YES! We have a solid walker. The eating is still going wonderfully and he has a big boy appetite. He truly enjoys FOOD (which is something I battle with Riley!) We are now teaching him how to use utensils to eat, which he is not a total fan of, but is catching on.

Verbally he is starting to say some words and is super chatty. His recent word is "stinky," which is probably because I say it to him often :) I feel like his verbal skills are starting to come together and things are starting to make sense. His inflections sounds like he has something to tell you, and it's super cute. Common words: Dada (of course!), Mama, dog, bye-bye, bath, more...just to name a few. I also have been told he says "Gina" which is his physical therapist. HA! He does make crazy sounds like rolling his tongue and has a language of his own. Someday it will all make sense!

Physically our occupational and physical therapist work on gross motor activities like passing a ball, switching items from one hand to another, sensory development, etc. He loves to throw a ball and pick it up...throw it again, pick it up. Recently he found interest in Riley's little play kitchen and enjoys annoying her while she is playing with her doll house. He definitely knows when he is getting a rise out of his older sister whether it is pulling her hair or purposely getting it her way. Riley has learned to handle it better than she did in the past. Let's just say, there may have been some pushing and shoving in the past. Sibling rivalry...gotta love it! We are working hard at being consistent with both. Even though Nolan is so precious and sweet, he is a little boy looking to cause trouble and needs some discipline!

Nolan is truly just a sweet little man. He is turning into a toddler right before our eyes and it is a blessing to see. When I look at him it's not who I was looking at a year ago...even 6 months ago. He is exactly what I expected my son to look like the day he was born a "perfectly healthy" baby...even having been born 6 weeks early! Looking back I remember our wonderful transplant coordinator (who has recently moved on to a new job and is sorely missed!) would tell me, "I promise, your life will be "normal" (and yes, she did use air quotes because really, what is "normal?") again someday. He will be a healthy, happy kid!" And she is right. Thank you, Alice, you were right!

Coming up! Nolan was scheduled to have his routine biopsy right before Christmas, however he came down with a minor cold and ear infection. We are now scheduled for Friday, January 30. It is hard to believe that Nolan's first heart-day is quickly approaching on January 24. Emotionally things are still tough, but I learn to just swallow that lump in my throat and move forward. Little things bring you back to some of those hard days that we went through or even just sitting in the CICU experiencing all that is happening right before your eyes. I won't lie that sometimes I get a good cry out in my car or in the shower. But, it actually feels good getting it out from time to time. I guess it is part of the emotional healing process.

New Year's resolution? To start updating more! Also, to start a plan to give back to other family members withing our community who has a child that is critically ill and experiencing a similar situation that we did. The support we have received (and continue to) from our community has been OVERWHELMING! I wish I could personally thank everyone or write a letter of thanks. You are all truly a huge reason why we are where we are today. Beyond thankful and blessed...not a day goes by where I don't think that.

SO, here's to hoping I can post weekly! It may not be a lot content, but I will be sure to incorporate pictures of our heart warrior. I can't say it enough...thank you all for the continued prayers, love and support!