My name is Justine Kylee and I am the mother of Nolan. He is 2 years old and the youngest of our 4 boys. Nolan had open heart surgery when he was 4 days old for an aortic arch coarctation. He is such a champ and has been in the clear cardiac wise since then with the exception of a 28% blockage starting in his aortic valve that was found today during a cardiac follow up. He will have another echo done on the 16th to get a better idea of what's to come and monitor it. in the past 2 years he has also had an overwhelming amount of chest infections, bronchitis and has gotten the flu every time it's been "possible". he was diagnosed with asthma within the last week as well. He also has a high arched palate and laryngomalacia wich was treated when he was about 8 months and is still being followed. On January 16th 2020 he will be having his 4 front teeth removed due to rotting wich we obviously did everything we could to prevent but was in evitable given his dental "strength". We are in the process of working with a number of specialist to find out if there is some type of underlying cause to everything that has been going on. On top of all of that he was diagnosed with severe Scoliosis with a 46 degree curver when he was about 1 year old. Over the last year and half despite brace after brace, physical therapy, early intervention etc his curve has only gotten worse. We met with his orthopedic doctor today and he is now at a 78 degree curve. Within the next 4 to 6 months Nolan will be having yet another surgery and getting rods placed in his back. He will be in the hospital for a week minimum with 1 to 2 month recovery time if all goes well. We are hoping they will be able to put in the magnetic rods to prevent reoccurring surgeries every 2 to 3 months to adjust the rods but they are unsure if it will be possible due to his size and severity of his curve. If the magnetic rods aren't able to be placed other rods will be placed but they will require surgery every 2 to 3 months to adjust them as he grows. Nolan will have these rods in his back for the rest of his life and will require more surgeries as the months goes by.x Nolan has been through alot in his short 2 years alive but he is the strongest little man I know and we are all very hopeful for what's to come. We know this will not slow him down and he will be running around with his brothers before we know it. Currently my husband works full time and at the moment I am able to work part time from home but with the constant appointments, gas,parking, medical bills and the time off/leave both my husband and I will be taking off not only for the surgeries but for recovery we are asking for any help you are able to give to help out our family take on not only this financial but emotional long road we are all about to start down. I will be updating this as we go to let everyone know his progress!
- Elisabeth White
- Sindy Silvia
- Sindy Silvia
- mike burnham
Fundraising team: Fundraising team (2)