Macy

Macy

Tuesday, February 9, 2016

Tubes

Tomorrow all 3 kids are getting tubes. Ear tubes that is. We have to be there at 7:30am and they will rotate the 3 in and out of surgery one at a time. Tomorrow will definitely be an interesting day. Adam's mom is coming down to help for the day so we can each concentrate on one kiddo, and give them the love and care they will need.

Up until last year (2015) none of our kids ever had an ear infection before. It was kinda strange that at 5 years old Macy was starting to get them each time she was sick. I wasn't sure if it was due to her low counts or what. But luckily, thanks to another FA mom I was given some answers. (Thank you by the way).  I want to take a quick pause to talk about how lucky and thankful we are to have our FA family (FAmily as we all call it). When Macy was first diagnosed we were so fortunate to have found the Fanconi Anemia Research Fund (FARF) right away. Many times when your child has a rare disease you are basically on your own. FARF is the only non profit in the USA that funds not only research to find a cure for FA, but family support services as well. We immediately had access to hundreds of FA families and individuals all over the world. We now also have a private FARF Facebook group as well. I can't even explain how helpful this group of people are. Not only in the emotional/mental way of support and community, but the unbelievable wealth of knowledge. If your kid is experiencing anything strange it's almost guaranteed there is someone there that has been through it. There are multitudes of families in every stage. From just being diagnosed, to beginning transplant...mid-transplant, cancer diagnosis, hospice, etc.
Another great thing about this group is its not just a bunch of strangers that never see each other in 'real' life. Not only do people get together in the regions in which they live, but a large number get together at Camp Sunshine in Maine every year. This is a camp specifically for children with serious life threatening medical conditions. There is a week every year dedicated to Fanconi Anemia. Not only do FAmilies attend but all of the leading researchers attend to discuss what they are working on, and where they are at in terms of treatments and a path towards a cure. Parents and kids meet year after year and become close friends. Its people you care deeply about and trust.
However, with this type of FAmily, there is also a great deal of pain. With the news of every child or FA adult's death, it brings such a sense of sorrow and defeat that is difficult to explain. It's also reality staring you in the face. Instead of trying to hide from difficult truths you have the reminder like a neon sign flashing constantly. Parents having to tell their child why their friend is not at camp this year. Parents reaching out to other parents asking how to go about starting a conversation with their child that they are going to die. It's hard, and those things really suck bad. But there's something about difficulty that brings people together. The support and willingness to help each other is unconditional. It is FAmily. And we are so grateful to have found these amazing human beings 5 years ago. I think I'd be a basket-case without them.

So as I was saying another FA parent told us of her daughter that had the same thing happen when she was a bit older. It turns out that due to growth issues that children with FA have, it can cause the tubes not to drain properly and can cause fluid build up behind the ear drum (which is what Macy has) this can cause ear infections. At the age of 5 Macy can also be a bit difficult to understand sometimes as well. She started getting speech services at school one day a week. Not to the extent that an IEP has been needed, but just enough to get some extra help in pronouncing words a bit more clearly. I really think getting rid of the fluid in her ears will help with this a lot. Because she'll actually be able to hear a lot better now.
The boys also got a couple ear infections last year so we decided it'd be easier just to do tubes with all of them and get it over with. Hopefully ear infections will be non existent this year! On a side note, our kiddos Pediatrician that they've had since the day Macy was born is moving to Detroit. :( So we have to get a new one. This makes me so sad. We love her. She's so great. She knows everything about us, and has been there from day one. It's going to be hard to transfer over to someone new that will have to completely start from scratch in learning about FA, etc. We have until March 7 so I better get on it. We will miss her but wish her the best of course.

This weekend is Disney on Ice!! Macy is so excited. We've gone for the last 3 years and I always buy the tickets during pre-sale and splurge and get the middle front row seats. We're about 2 feet from the ice. I brought Macy last year so Adam will bring her this year. She's already looking through all her princess dresses to figure out what one she's going to wear. We will see...

Take care
Jenn