The Dutch Classic and Other News

It’s been a crazy few weeks, although I s'pose that’s not saying much.

The biggest news is that Keira is going to have surgery on Monday. The ENT found that Keira’s tonsils are not only enormous, but have no tone, so they are literally hanging in her throat. So, grossly, she may actually be gagging on them and THIS could be our answer for why she is retching/vomiting so much at night. Jeff and I are both very optimistic that this could lead to some major improvements including fattening her up and getting her to sleep better. We can’t wait. K will also undergo an endoscopy on Monday to take a look at the status of her fundoplication and make sure there aren’t any ulcers or other abnormalities contributing to the situation. I’m also very thankful that the ENT has ordered, of her own accord, for Keira to stay in the hospital, at least overnight, in the PICU. She recognizes that there is some concern that with a sore throat, K is especially at risk for pooling fluids and aspirating. The boys are excited because this affords them at least two nights at Grandma Janie’s. My one wish is that this surgery had been scheduled sooner. Our plan had been to leave on November 20^th to take the kids to Southern California for Thanksgiving. I want so much to get out of town. I’m hoping and praying for a quick recovery for Keira. She doesn’t typically bounce back in a hurry.

Keira, overall, is doing pretty well these days. She's doing amazing things in therapy; working so, so hard. She’s chewing like crazy in feeding therapy, kicking AND holding rings SIMULTANEOUSLY in swimming, crawling with her arms and experimenting with a gait trainer in PT, and participating in group by activating her switch. Really fun stuff. 

We continue to monitor her very closely to try to keep her well regulated. Halloween is a good example. Keira dressed up like the cutest little cheerleader you ever saw. In my mind, it was a little tribute to all of you, “Team Keira,” who are consistently cheering her on. She seemed to enjoy the process of getting dressed up, taking pictures, and rustling her pompom. However, not long after we’d left the house to meet up with some friends, she was retching and throwing up. So, we divided (as we’ve sadly become accustomed to) and Jeff took her home for a quiet night while I tried to keep up with the trick-or-treating Tron and Master Chief.

We met with another new specialist, which was an interesting experience. He’s a physiatrist and my understanding of that is that he’s the one who will be in charge of Botox or Baclofen, or other medications/interventions to help with muscle pain and spasticity associated with CP.  The pediatrician told me she wanted to know what I thought of him because some parents didn’t like him. Interesting…

So let me start by saying that I’ve heard of lots of parents who’ve been told things like, “He’ll never walk,” “She’ll never talk,” “He won’t live to be 5,” etc. etc. Fortunately or not, we’ve never been told anything like that. In spite of her grave symptoms, doctors are very tentative and careful to avoid discussing prognosis or the D-word at any cost. Nobody has ever directly said that Keira won’t do this or that or that her life expectancy is limited. For me, that’s unsettling. 

So anyhow, we meet the physiatrist. I thought he was awesome. The appointment was a brief exam but mostly a conversation about how life with Keira is and could be. He asked about how Jeff and I are holding up. He asked how the boys were doing, because having a sibling like K can be life-altering in good and bad ways. He addressed the fact that Keira is “medically fragile” and that she could come down with the flu and not survive it. Or perhaps we could walk into her nursery to get her up one morning and she wouldn’t be breathing. He talked about how, as she grows, she is likely to have more and more muscle pain and we’ll have to watch out for scoliosis. He asked if we have a wheelchair, ramps, lifts, and other things to help make our life easier. He suggested that we fill out an advanced directive. He suggested that we meet with the palliative care* team the next time we come in to meet with him .

Long story short, I thought this doctor was great. He was gentle and kind and wore mismatched crazy socks, but was also so refreshing in his candor and honesty. I suppose I can see, though, why many parents would not like him. And just because I liked him, doesn’t mean it was easy. After 30 minutes in the room with him, I kind of felt punched in the guts. 

One more story… The Babboe bike is coming TODAY! I’m so excited. We’re taking it directly to the bike shop to have it put together and tuned and I’m hoping for warm enough weather to take Keira on her first ride on Sunday. Last I heard, the bike was almost completely funded through R Life Gives. Thank you, everybody!

So here’s the thing. A while back, the bike company informed me that our bike would actually say “Babboe Dog” on the side of the wooden box. They wanted me to know that, free of charge, they’d be sending me a different decal to cover that up.  So, yesterday I went to the post office to pick up a package. Turns out it was our replacement decals for the bike box.

Oh. My. Goodness. I could not stop laughing. Is this serious? Anticipating a company trademark, in no way did I expect our replacement decals would be the “Dutch Classic.” It is blue and white print that is large enough to wallpaper the box from top to bottom on all sides. As if the bike weren’t a spectacle on its own. The jury is out on whether or not we’re going to go all in and use the decals. It makes me giggle just thinking about it.  I’ll keep you posted.

Much love to you all.  

*My understanding of palliative care is that the goal is to keep a patient comfortable with the assumption that there is not going to be a great amount of recovery