Surviving our Summer
For Mid-westerners, the summer is precious. You don't survive it. You welcome it. It's the season of slow starts to days that seem to last forever in a good way. It's endless sunshine but always strange weather. Summer is the revival of festivals and outdoor concerts, Cedar Point. Countless hours at the pool, giggles, running, bubbles, lightening bugs in the dark against the starlit sky, campfires, s'mores and all things that make childhood great.
Not exactly our summer. The way we survive living with Hunter Syndrome is we strive to get past the first obstacle then the next then the next. We know that sometimes things are temporary and will get better. When you start weekly infusions you get past them until they can be done at home and not in a hospital. Your kids do not want to go to the hospital weekly. You get past monthly clinical trial visits in Chicago to the extension study where it's hopefully closer to home. You cherish people who help you, who are selfless and who think of you first. We had several sweet, selfless people help us this summer. You tell yourself that you just need to keep going! You just survive it. You compartmentalize it. You arrive at it. You watch it go. You make the best of it and then you hope that nothing unexpected throws things into more of a tizzy than it already is, and in the midst you have a life and somehow it works.
This is what we did, and we made it through! We made it through June, July, and now we're making our way through August. In June, Hunter Syndrome and living a normal life collided creating a pace that was an all out sprint all month long. As parents we feel the weight of getting everything done that Hunter Syndrome requires; weekly infusions, planned and unplanned surgeries, bouts with random illness, clinical trial visits, finding child care for special needs, planning regular summer activities around Hunter Syndrome, while working and taking care of our family...when you list it out or blog about it...it's unbelievable. During the summer our careers were also in overdrive, but we just kept going. With two children with Hunter Syndrome, both having such disparate experiences it's starting to feel like an ever revolving door, in and out to this and that. We also did our best to have fun, and give the kids a great summer but it was a struggle to keep the balance! We missed spending time with our friends, catching up with old friends, and celebrating our wedding anniversary. If we missed you or something was canceled, know we still think of that and miss you. We'll make up for those misses as we're still so grateful for our lives, for our boys, for the opportunity to fill a clinical trial spot, and to keep driving to keep our boys as healthy as possible.
Surgeries and Clinical Trial Visits
In June, Alex's surgical needs became a top priority. When a child goes in for surgery, especially a medically complex child, lots of appointments are needed, letters, and paperwork are required from specialists to essentially clear the child, and OK the surgery. With Hunter Syndrome, you have lots of specialists. It is a lot of work for the parents. Especially if you're due for a followup or the physician wants to see the child for an updated look at their health. These clearances are required from everyone; genetics, pediatrics, all specialists, as I said it's a lot for Alex and it's a lot for us. I continue to be so impressed with some of his physicians who always put us first, and think of our needs and do whatever they can to help ease our worries and medical load of appointments. I am so thankful for those physicians. They are the ones who really get it.
|Coming out of surgery|
|Heading home, not feeling great|
Next were his teeth. Like many Hunter Syndrome kids, Alex chews things wearing away the enamel on his teeth. It's horrible. He had tons, and tons of dental work. Gladly he did his follow up here in Cleveland without general anesthesia which is nothing short of a miracle, and shows that he is alert, he knows what's happening, and he's willing to comply sometimes. Our master plan for Alex is to keep working on the issues caused by Hunter Syndrome improving his overall quality of life. We watch clinical trials for him, and continue to hope that treatments progress and become available that can help him. Alex isn't declining rapidly, it's just that he isn't moving forward and developing at the same pace as his peers. So, it's a slow decline. He has been through so much this summer we tried to let him rest as much as possible. He also had to deal with some random illness throughout the summer that was likely tied to just the regular issues Hunter Syndrome creates with their intestines.
Not one summer day goes by that we don't think about what we can do for Alex. For us he remains a puzzle, that we're trying to complete because he's worth it and he's completely adorable.
|What we build at clinical trial visits from Legos and a Coffee carrier! |
"...one small step for man, one giant leap for mankind"
|Flying to Chicago|