Thursday, March 19, 2015

March Madness


Wow. Time REALLY flies. February is the shortest month of the year, but typically is seems to DRAG...however, not this one. Our highlight in the month of February is our baby girl's birthday. I had all plans to actually throw her a party this year and the whole sha-bang since last year we were still in Pittsburgh. Well, needless to say, plans got diverted.

A few days after we returned back from Nolan's biopsy (end of January), Nolan and I went to see an optometrist in State College because his right eye tends to move inward, which you probably notice in pictures. The appointment went great and the optometrist does not feel he will need any corrective surgery. She suggested some exercises Nolan can do with our OT that will help strengthen the eye and she also says she believes Nolan's vision is appropriate for his age, which is all reassuring because with him having three strokes it was a concern for us. SO - successful appointment.

The next day Nolan woke up screaming, which really is not his norm. The minute I looked at him, I knew he was sick. He had been working on a cold/ear infection on and off since Christmastime, and I could tell something was brewing. He gets the classic red cheeks, irritation and of course, just wants held. I took his temperature, and it was normal, so I figured it was just a rougher morning. He did sound a little rattley in the chest, but nothing I was overly concerned about. In the back of my mind though I thought to myself..."I bet I see him later today in the ED." And sure enough, we were in the ED by the afternoon with a 102 fever.

His demeanor was fine and even didn't sound that rattley in the chest when I met him at the ED (he was brought by my mother-in-law.) So, I was shocked when tests came back and he popped positive for RSV! To make a long story short, we ended up being admitted and on courses of antibiotic IVs for over 10 days. The nurses, Dr. Gombosi and the residents were all great, as always, in the pediatric unit of Williamsport Regional Medical Center. I am so thankful for support Children's Hospital at Pittsburgh gives the team here locally when Nolan is admitted. We were never nervous, just glad that we were finally going to kick this lingering cold/ear infection/RSV once and for all (well, at least for this season.)

SO, we got discharged on Valentine's Day, and it was great to all be HOME once again! Riley's birthday quickly followed, and it was highly advised that Nolan not be around people, so we had a quiet, but fun, birthday dinner for Riley. She probably got more gifts than she would if we had a party, so needless to say, she was happy! The following week, Matt and I had our first vacation planned ALONE. We had all intuitions of going to an all-inclusive resort in the Caribbean, but Nolan's recent ailment scared us to be close. So, a vacation within driving distance in the dead of winter? We decided to go skiing! And, it ended up being one of the coldest weeks of the year, but we did have a great time. If you are ever looking for an awesome place to ski on the east coast, Stowe, Vermont is awesome! We stayed at the Stowe Mountain Resort right at the base of the
mountain. The lodge is exactly what you would imagine it to be. Very family friendly and the town is quaint and the people are nice. Admittedly, it was hard to totally relax. This was our first time away from Nolan for this long...but, him and Riley were in great hands with my in-laws and my parents.

Currently, Nolan is doing great. We are SO close to spring, I can't wait to get him back out into the world and allow him to see people! :) We have almost made it through our first winter home, and next winter will be much easier as his immune system will be stronger and Matt and I will be less paranoid! :)

We hope you all are doing well...happy March! Warmer days are on our way!


(TODAY) :)

This is just an example of how crazy and busy life has been! The past few weeks have been great. We had the GI bug hit our household...everyone got it, except me. Now we are all healthy and ready for some warmer days. We are so excited to bring Nolan out into the "world." I have a lot to catch up on, but for now I will just give a quick update on our little guy.

Appetite is back and weight is rising. ALL great things I love to see. Developmentally he seems to be excelling. Words are forming left and right. The latest:

  • See ya!
  • Thank you.
  • Welcome.
  • Have a nice day!
  • More.
Just to name a few. (all baby talk, of course) My most favorite thing right now? He hums and sings songs. It is adorable. We have such an amazing team of therapists...and our nurses, just awesome. You can tell they work hard with Nolan daily. So thankful! I honestly NEVER in my wildest dreams would have thought Nolan would ever be where he is today. A year ago from today Nolan couldn't even sit without he is sprinting around our house. Life isn't just good - it's AMAZING!

Our next exciting adventure will be back to Pittsburgh the end of May for another biopsy. At that time we also have an appointment with nephrology, pulmanology and genetics. 

Nephrology is to check out his kidney function. The last time we were in Pittsburgh his pH levels were pretty off, so he has been on sodium bicarbonate as a supplement. It is pretty common for transplant physicians to be pretty cautious about the kidneys. Because of medications, many transplant recipient's kidneys take quite a beating. Many have to ultimately receive a kidney transplant down the road. Because medicine continues to progress and side effects are easier on other organs, we are hopeful we won't have to go down this route. With that said, our team of physicians err on the side of caution (as they should!) and are making sure his kidneys are functioning appropriately.

Pulmanology is to check our Nolan's respiratory tract. Because he has had so many respiratory viruses this past season, again, our physicians want to make sure they aren't missing anything. So, we will see a pulmanologist that specializes in transplant patients.

Genetics - well, self explanatory. Although Matt and I are done having kids, we do want to make sure that the cardiomyopathy isn't something that is in our make up. We do not know any of our immediate relatives or past relatives that have suffered from this disease, however, again, to play it safe we are going to see if we can get some answers. In my gut, I personally feel this was due to a viral issue. BUT - I am NOT doctor. I can say that Nolan had multiple echocardiograms that all came back perfectly normal until September 30,, it was definitely not something he was born with. BUT, I guess that is why we consult genetic doctors...hoping to get an answer.

That is really the latest here! I have a couple blog posts coming up that will be dedicated to a few things coming up related to Nolan and forming a team to give back and help others in the time of need. I am beyond appreciative of what our community has done for our boy. He has so many people that love him and TRULY support him...because of our friends/family/strangers, Nolan has a nice trust fund set aside for him in life that he can use for medical purposes. It puts us at ease, more so it will put him at ease when he becomes an adult. So, it's our time to pay it forward and give back to others. More on that later.

WELL - back to March Madness! I have UVA going all the way! GO WAHOOS!


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!!