Half Way Through the Week!

Wednesday, March 26, 2014

Half Way Through the Week!

I am definitely getting bored here cooped up at the Ronald McDonald House. Tomorrow Matt and my mom arrive to help start our journey home on Friday! We are so excited and in disbelief that this day is so close. All sorts of emotions...mainly scared to be 4 hours from CHP. BUT, I know we will be in good hands back in our area.

Nolan and I were up bright and early again. 5 am seems to be the waking hour these days. It goes something like...Nolan wakes up super happy, gets cranky (because he is still tired), takes one to two blow out poops, then falls back asleep. This all before 7:30 - 8 am. But today we had to be at the lab by 8 am. We got in and out pretty quick - and got a blood draw on the first poke!

After that, we came back to the Ronald McDonald House and Nolan took a nap. At 11 am we were back over to the hospital for speech therapy. He did AMAZING today! He probably ate about a 1/4 of a jar of carrots...swallowing them and all. During the day I also worked on giving him a bottle, then I fed him carrots and apples tonight. I think consistently introducing it and having him see us eat will help regain his ability to eat by mouth. I can't wait for the day we can take out the NG tube for good!

It has been tough being stuck here, however it has allowed me to spend some quality time with Nolan. I really feel like I got to know him all over again. He is such an animated little guy. I just let him go on the floor and he will roll from one side of the room to the other. Every day he is stronger and doing more. He is chatting, saying 'mama' and 'dada.' He will look at you and try to talk...lots of babble. So fun to watch!

Tomorrow is a busy day. We have clinic at 10:30 am, then OT and PT from 3 - 5 pm. Matt and my mom will not show up until later in the evening.

Thank you all for the continued prayers and support! Our journey is certainly not over, this is just the beginning. I pray Nolan has a smooth life from here on out, but, that is definitely an uncertainty. We will continue to fight the fight as each battle comes. I have hope and a good feeling that he will do amazing things in life!

I see I got ahead of myself yesterday and said we only had 2 more nights here. :) I think I am going crazy here in my own thoughts!

REALLY - now...2 more nights!

#nhos

1 comment:

online drugstore usaJune 5, 2020 at 2:45 AM
Thank you for always going above and beyond to ensure the success of a project.
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About Nolan

Nolan was brought by Life Flight to Hershey Medical Center on the evening of September 30, 2013. Earlier that day he went to the doctor for typical cold symptoms and was then sent to Susquehanna Health's Emergency Department for further testing and breathing treatments. After having many tests done, an X-ray showed what was believed to be an enlarged heart. An ultrasound confirmed this condition and he was quickly transported to the Children's Hospital at Hershey Medical Center. It was believed that Nolan was suffering from a viral infection in his heart called myocarditis, which is an inflammation of the myocardium, the middle layer of the heart wall. After going through a series of treatments at the Children's Hospital at Hershey Medical Center and not showing any improvement, the team of physicians felt best that he be sent to the Children's Hospital of Pittsburgh of UPMC.

Nolan was flown to Pittsburgh on Friday, October 4. After several days of observation, Nolan was diagnosed with dilated cardiomyopathy. He was placed on a ventricular assist device (Berlin heart) which pumped the left side of his heart. Nolan spent 101 days on the VAD. He received the gift of life on January 24, 2014. We are forever grateful to his donor family for such a selfless act. As their lives have changed forever, so has Nolan's. They gave him a second chance at life.