We want to give our boys the best chance of growing to their height potential, but never in a million years were we prepared to trade their overall health for height. Our local endocrinologist just doesn't know that much about RSS. It's so rare, few doctors know much about it, much less know how to best treat it. So this endocrinologist is trying to learn. He is great at being willing to listen and will contact Dr. Harbison, the Russell-Silver Syndrome specialist, at our request, but with having a middle man between us and Dr. H, we didn't feel like we were getting the clear answers we needed. The more Ryan and I talked about it the more we felt we needed to make another trip to see Dr. Harbison ourselves. I especially wanted answers before bringing Hallie home and adding her medical concerns to the ones we were still dealing with. We applied for and received a scholarship to attend the MAGIC Foundation Convention, where we would be able to have both boys seen by Dr. Harbison, plus, get to attend the medical educational lectures and let our boys interact with kids who are just like them.
When we took Mason a few years ago, Miracle flights flew us for free and told us that since we were qualified to use them once, we'd be able to fly again them in the future, so I had assumed that was what we would do again. After turning in our paperwork, they asked me to redo all of the paperwork, including having the doctors' redo their letters and forms, to include that the appointments were in conjunction with a medical convention. Then, as soon as we turned in the new forms, they said they were sorry, but wouldn't provide flights to medical conventions anymore. They could help us if we flew to see Dr. H in New York, at her regular practice, but would not help us see her in Chicago. I was pretty frustrated that if they knew that they weren't going to fly us to a convention, they wasted our time and the doctors' time by asking us to redo all of the paperwork. I even asked them to make an exception, explaining that the reason we chose to see Dr. Harbison at the convention, rather than in her office in New York is primarily for financial reasons. Dr. Harbison will see us for free at the convention, rather than charging us for an office visit that our insurance won't cover. And because MAGIC offered us a scholarship to attend, they were covering the cost of our hotel for us, where if we went to New York, we'd have that as an added expense. I also told them that we are in the process of an international adoption, adopting another child who is also believed to have this same rare condition, and are still working on the funds necessary to bring her home, making it impossible for us to afford the additional costs associated with seeing Dr. Harbison in New York vs seeing her in Chicago for free. They wouldn't budge. Having a doctors appointment at a medical convention meant a big fat NO. I was so sad that this silly rule would keep us from the answers we had been hoping to finally get. Actually devastated would be more accurate. After letting me have a good cry, Ryan told me he was looking up the best driving route. It hadn't even occurred to me to drive that far, but Ryan knew how much it meant to me, and that gas money would be much more doable than airfare, so he made it happen. I love that man!
We started our drive Tuesday evening, drove through the night and half
of the next day, then set up camp at a KOA in Des Moines, Iowa for a
break. The kids had a great time with all they had to do there and got
all of their wiggles out.
One bonus of driving vs. flying is that we got to take Maddie too. She
was a great helper to have along. And another fun thing is that one of
her good friends moved to Chicago, so she got to spend a day with her.
Even Ryan got some wiggles out.
Check out the nice view.
Oh, and I really like this one too ;)
There was also a fishing pond for Ryan.
I love pictures of kids sleeping all over each other.
The next morning we woke up, packed up the tent and drove the rest of the way to Chicago. We ran into major construction that slowed us down and ended up getting to the hotel only about an hour and a half before our appointments. We hauled all of our stuff inside, took quick showers and rushed to see Dr. Harbison. It was a great appointment. She, and the huge panel of doctors and assistants there to observe, thought the boys looked fantastic. She gave a Jordan a thorough look over since it was her first time seeing him. He was absolutely not a fan and yelled "NO!" at her throughout the entire appointment and Dr. H commented, in all seriousness, that she was worried about his development since "no" was all he knew how to say... haha, had I not already know Dr. H, I might have fretted over that, but we know that she is funny about some things, and we know that Jordan does, in fact, does know how to say quite a lot more than just "no" so we were able to just laugh it off. Anyway, we've never felt it necessary to have Jordan's genetic testing done since it's so expensive and we've always felt sure he did in fact have RSS, but it was nice to have the world's specialist confirm that we were right. She said Jordan definitely has RSS and most likely has the 11p15 type RSS, the same as Mason.
As far as the IGF levels go, Dr. H explained that RSS kids need to have higher levels in order to grow and the fact that Mason and Jordan's levels were already elevated before they started GH, shows that their bodies handle IGF different than the typical body. She compared it to someone not having a reaction to something they are already immune to. She wasn't pleased with Mason's height, saying that he should have made more progress for how long he has been on GH, and said that not only should his doctor stop worrying about IGF levels, but that he should be more consistent with upping his dose of GH with his weight gain, otherwise, he'll never make it to his target height, making the daily shots kind of pointless. I'd like to say that having Dr. H tell me not to worry made me feel better, but after our whirlwind appointment was over and I had time to think everything over, I still felt like I needed more clarity, especially on the risks. Luckily we were able to attend two of her lectures and in one of them she went over this very concept again and even eluded to the fact that the study that scares everyone so much was not necessarily a sound study and didn't pertain to children on Growth Hormone. This helped me feel mostly better, but after coming so far for answers, I wanted to be sure everything was crystal clear. So... at risk of beating a dead horse, I approached Dr. H after one of lectures to talk it over with her one last time, she was patient with me and answered my questions again and I can finally say I feel okay about continuing growth hormone for Mason and Jordan.
Yep, this is her, the famous Dr. H with a happy Mason and shell shocked Jordan.
Fun Fact: Jordan is wearing the same outfit Mason wore to meet Dr. H for the first time.
There was a balloon artist that made this when Maddie requested a
cat. I'm sorry, but that is the weirdest cat I have ever seen. I
still don't know what's going on there.
The kids got to make their own stuffed animals.
Fighting with balloon swords that actually look like swords.
Relaxing for a bit.
The RSS group photo. I love seeing all of the kids with the "RSS look"
all together. We come from all over the world but we're all dealing
with the same things and it's nice to have an unspoken understanding
with so many people. Everyone just gets it.
Cuteness x100.
Talking to Dr. H... Jordan was much more pleasant this time and didn't even tell her no.
We're off the the Pajama Party/Banquet/Dance.
It was fun to see old friends, even if they didn't want to see us, or at least want to see our camera.
These darling boys are both starting kindergarten this year.
This was the first friend we met at the convention a few years ago. Both boys have grown up so much!
We finally got to meet some of our friends from Vegas with Utah ties.
Yum.
This is Jennifer Salem. She has a young adult daughter with RSS and
works with the MAGIC Foundation. She wrote the amazing guidebook that
we take to all of our doctors appointments and heavily rely on all the
time. Most really rare diseases do not have anything close to that type
of resource, but we do because of Jennifer. Also, she is the woman who
posted Jordan's story on a Facebook page which led to us adopting
Jordan. I have an incredibly deep appreciation for this woman.
I also appreciate the MAGIC Foundation as a whole. We learn so much
more than we expect to every time we go to their convention. I told
Ryan that getting a diagnosis is like someone handing you a map of the
U.S. They say, "Here you are on the East Coast, you want to end up on
the West Coast." But it's such a zoomed out view, you can't really see
all of the specific roads to take. Overall, I know we're heading in the
right direction, but not always sure we're taking the most efficient
route. Every time we go to convention it's like we have experienced
guides with detailed maps of the specific areas we are coming up to that
go over the maps with me and help me solidify in my mind the best
routes to take on our upcoming leg of the journey. I leave feeling far
more confident about where we are going but also hopeful we'll get to go
back to convention before we reach the next big area of the map that we
haven't been able to study in depth yet. With RSS there are new things
to worry about every few years, so just when we start to get
comfortable, things start to change. I'm grateful for every bit of help
we get along the way.
Speaking of roads, check out how horribly these lines were painted.
There were miles and miles of these unbelievably skiwampus lines along
this stretch of road in Illinois. We couldn't stop marveling and
laughing at them.
Crossing the Mississippi River.
We were impressed with how many windmills we passed on our trip.
On our first night driving to Chicago, Mason woke up in the night and
asked where we were. We told him we were in Nebraska. That morning he
woke up and asked where we were. When we told him we were still in
Nebraska he said, "I hate Nebraska!" Haha... Nebraska is a looooong state to drive through.
This is how Mason feels about Nebraska.
We stopped in Omaha to camp one last night.
We got a much needed break.
But it was hot.
It was really, really hot. There was a heat advisory for Omaha that night and we were feeling it.
At 9pm, when we were all laying in the tent without sleeping bags or
blankets and still just pouring sweat, we decided we had had enough of
Omaha and its heat advisory. It was so hot, we knew we wouldn't be
able to sleep, and if we weren't going to sleep, we might as well be
getting closer to home in an air conditioned vehicle. So... we packed
our tent and drove through the night and half of the next day, then
crashed at home. It was a lot of driving but so amazingly worth it.
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