oh my stars.
Took this photo at the Frederik Meijer Gardens just after Christmas. Playing with my camera.
funny face.
Had to share this picture of Ty and his funny face. This was taken at the GR Children’s Museum just before the New Year. We met up with cousins Danny and Elizabeth and had fun!
chugging along.
We’ve had a few appointments since I last wrote. We had an endocrinologist appointment and the day after that we met with genetics again. In the end, all arrows point to removing of the thyroid sooner than later. So before the age of 5. We are currently working with the endocrinologist for a surgical referral. It maybe done in town, or we may be going to Ann Arbor to go to U of M, but please know that our decision we make is going to be what is best for our family and it’s not a decision to be made lightly.
When we saw the endocrinologist after Christmas, he had blood work drawn on Ty. He assured me today that all of his blood work came back normal, so that is great news. It totally broke our hearts when we heard Ty say, “No more pokes!” to us as we were leaving the lab. It was his 2nd only poke ever for blood draw, but it is the start of many to come in his life – for the rest of his life.
So we’re taking it one step at a time and getting referrals lined up and writing down questions we want to ask and such. We have a lot of good friends and resources we can turn to, and we are very thankful for that. We already thank many of you already for thoughts and prayers as we chugga chug on our journey with Tyler. We’re proactive and we’re educating ourselves and keeping open minds and eyes and ears.
In the meantime, Chris just had a nasty bout of the flu over the past weekend. He pretty much quarantined himself in the bedroom for the weekend as I slept on the couch and disinfected and did laundry all weekend long. My stomach was really bothering me during Christmas time and the New Year, but then it passed, but now it’s all back again. Stomach hurts and aches and it’s just not happy fun. Hopefully this is just stress and this too, shall pass.
We had a lot of fun recently with cousins – either at Christmas time or at the Grand Rapids Children’s Museum or just about town. So we had some fun during the holidays and it was a great way to help keep our minds off the junky stuff we don’t need to be bogged down with.
I really just want my new hockey skates exchanged for a smaller size, and sharpened. I want to go skate and work off some stressful energy and get back into shape again!
let your colors shine.
I took this photo at the Frederik Meijer Gardens and Sculpture Park on December 26th of 2011. We were visiting the FMG with family and enjoyed looking at all the decorated trees from across the globe. We walked outdoors for a bit and had fun!
a walk through the gardens.
The day after Christmas a few of us headed over the the Frederik Meijer Gardens to go look at the Christmas tree display and lights before everything goes away and taken down for the year. In the main conservatory, it was really pretty as the sun was beginning to set and the lights from the trees were all that were lighting your way.
happy holidays.
Wishing everyone a safe and merry holiday season – no matter what you believe in! Just be safe and have fun.
Sharing a photo from our Christmas tree that I took with my Nikon camera.
Enjoy.
making tracks.
We have made some progress – at least as far as getting some appointments made. We are going to be meeting with a pediatric endocrinologist on Tuesday the 27th and then we have our follow up appointment with our genetics counselor the next day. Appointments made, I should be feeling better, but I have this knot in my stomach that won’t go away. This too, shall pass.
While this MEN2A has been “Chris’s Crud” to deal with, since he personally has it, it’s now “My Crud”, too. I think it probably started back when we had surgery to have his adrenal glands removed at U of M years ago. I knew early on that I’d have to deal with this condition, but not to take it on as my “own”. Chris has his medication that he takes everyday and that should be it. Go to the doctor every year and get levels checked out and be done with it. If you ever have kids, there is a 50/50 chance Chris could pass this on to your offspring. And there you have it.
But now since Fry Ty has got the crud, it’s now my problem to deal with as well. I guess, I too, have MEN2A (in the theoretical sense). I’ve had it all along since being with Chris, I just never realized the actual impact it actually makes upon me until now. I act like it is some big deal, while yes it is, I do know that we are doing all the proactive steps we can do. But yes, it’s a big deal, but something we can handle and manage and keep informed about.
So I’m busy researching and finding out information in order to make sure Tyler is properly taken care of. You just don’t want to accept that YES I DO HAVE TO DEAL WITH THIS but you do.
It’s like it’s a train ride you didn’t want to take, but you got shoved on the train anyway and the conductor just says, “Hang on tight!” and away we go. Yes, this train business is probably due to the repeated episodes of Thomas the Train or Chuggington. Heaven forbid we are not useful engines and we make Sir Toppham Hat cross or we bust our buffers.
I think it’s just anxiety because you don’t ever want your children to have any illness or ever have to go through surgery or any major medical issue. Or any major life issue in general. But here we are – and we’ve got train tickets that were issued a long time ago, and now it’s time to hop on the tracks and hopefully we’re going the right direction without too many bumps or stops along the way.
We will just take it one step at a time, I guess since I’m using the train metaphor – one depot at a time. Make our stops at each depot (each doctor) and take this on one track at a time.
Cheeseball.
I know.
That’s what I am. But it sort of helps to let this out. And for that, I guess, that’s “train-tastic”!
the journey begins.
Well, I should probably say the journey began before Tyler was born, but after recent genetic testing, Ty has tested positive for the RET mutation that is found with MEN. There are two types – Type 1 and Type 2. Since Chris has the Type 2a, this is what Tyler has as well.
MEN is also known as Multiple Endocrine Neoplasia. While this isn’t something entirely new for me to learn and understand, since Chris does have this – but knowing our little dude has tested positive for this now begins a journey of doctor visits and probably more testing and ultimately surgery to remove the thyroid before the age of 5.
Hopefully I will be able to make some contacts with the pediatric endocrinology folks at the local children’s hospital in the next few weeks to start planning out what steps to do next. We do have a follow up with our genetics counselor after Christmas and plan on bringing other questions with us that we have.
So begins our journey in taking care of Ty and taking care of ourselves. It is no surprise that Ty could get this (we knew we had a 50/50 chance of passing this along to any children we have), and while you are prepared to prepare for the worst answer (testing positive) – you still don’t want to believe it or deal with it – but we are taking action and being proactive with whatever we can do for our family.
The journey begins.
between color and light.
I was playing around on a beautiful autumn afternoon with my camera – here I was playing with shutter speed, exposure and just goofing off.
