Change of Plans and B is for Babboe

So...yesterday evening, Keira's dietician emailed me to see if there was anything else she could do for us. As I had been saying for months (or so I thought), I told her to let us know if she came across any higher-density foods that would allow us to feed Keira more calories with less total volume. She responded immediately with, "You have tried the 1.5 [calories per ml as opposed to 1 calorie per ml] formulas, right?"

What?!?!

Well, no, actually we hadn't. I don't know why we hadn't spoken of this, at least not recently. After talking to the doctor today, I remembered that a very long time ago, we discussed this option and opted out because of the potential for the heavy formula to sit in her stomach like a slice of cheesecake. But it's worth a try. Because I'll only have to get 400 ml in her each day rather than 600. The doctor said he's going to feel like an ass if this is the solution for us. I love him even more.

Also, yesterday, a friend of mine who is less-known by Keira held her for a bit. After having had a really good day, Keira wouldn't look at my friend and started refluxing almost immediately. I'm thankful for that little window because it reminded me that Keira's increased vomiting could be that she's reacting to the changes in her life lately (ie. the boys are back in school; I'm often gone during the day; we've switched her caregivers around a bit; she's done with her beloved OT...). I mean, I know that she's always been prone to getting overwhelmed and overstimulated, but I hadn't quite been able and/or willing to see her vomiting as another manifestation of this.

So, we're holding off on the GJ. Going to try a new food and help her to regulate her sensory systems again. We'll see what happens. We had Keira weighed today to get a baseline before starting her new food. She's down over a pound since last week. Eek!

***

I'd like to introduce to you R Life Gives. It's a nonprofit organization that our cousin recently started for the purpose of helping families like ours with specific financial needs. He chose Keira to be the first recipient of this giving and I'm so excited! The idea is much like a Go Fund Me account, though R Life Gives will not get a cut of the donations (I've heard that Go Fund Me takes about 30%!?).

I would encourage you, if you would like to help fund this awesome bike for Keira, that you do it directly through R Life Gives' website. http://rlifegives.org

Just a reminder, the bike will be imported from the Netherlands. It costs $2500. The company, My Amsterdam Bike, has actually donated the first $100 because they thought this was such a neat gift for our girl. Once in our possession, we'll be able to take K along on family bike rides by putting her in the box in her Tumble Form chair or her wheelchair. She's going to love it!

If any money is raised in excess of the amount needed for the Babboe bike, it will go toward other medical and adaptive equipment that will make Keira's life more easy and comfortable. Our unofficial wishlist right now includes a medical-grade scale, an iPad with an assortment of adaptive applications, a "button" and transmitter for Keira to be able to operate various household devices (i.e.. fan, iPad, blender) and toys, therapy-grade headphones and an assortment of therapeutic music CD's, and a baby recliner.

Thank you, thank you, thank you, in advance. We so appreciate you all!

Three

To be totally honest, party day was tough. Jeff and I were exhausted. I was not the most enthusiastic or gracious host. But the day was certainly festive.

Special thanks to Steph, for the wonderful decorations. They're still up. Jeff said, "We should leave the banner up all the time, cause that's pretty much what this house is." The banner says, "Welcome to Keira's party."

Thanks so much to my mom, for taking the lovely photos and for preparing all of the pudding. Yes, we had pudding. And it was delicious. Because, you see, K can eat pudding, too!

Thank you to everyone who came to the party and to everyone who sent well wishes. Thanks to all who brought clothes! Keira is going to be the best-dressed 3-year-old this season!

And thank you to everyone who has already contributed to buying Keira's bike. We are so excited for this. More on that soon.

The update for the week is that Keira continues to retch and vomit uncontrollably in the evenings. She's going to have her G tube converted to a G-J tube on Friday. This procedure is pretty minor. It's outpatient and we should be able to do it without sedation. Let's hope it helps. Jeff and I aren't overly optimistic.

When I gave Liam this update earlier today, he said I was turning his sister into a cyborg. Ha! I agreed that unfortunately, he's right, but that I'd prefer more artificial parts over chronic vomiting. He didn't realize this had been a problem. I suppose it's primarily an issue after he goes to bed. Funny he didn't even know...I wonder how those boys experience this. I feel bad. I work pretty hard to keep life normal for them, but today as I dropped them off at school and as I was picking them up, I was preoccupied on the phone with doctors' offices. Sigh...

I'll update again soon.

Worry

I missed my freeway exit.
I dreamed that I had to be at two doctor appointments at once, and could find neither of them.
I called Liam Ronin and vice versa. Repeatedly and often.
I ate the cookies. All of them.
I couldn't remember whether I shampooed my hair.
I asked Steph to go to "Zamzows" (uhh....Zurchers) for party supplies.
I dreamed that my favorite doctor was older and fatter and indifferent. In my dream, I tried to cry out and there was no sound.

So then, being the psychologically savvy woman that I am, I said to myself, "I must be more stressed out than usual." Ha!

You know, when you do this work every day, it's easy, and probably necessary, to lose perspective on the seriousness of it all. Strange things feel uplifting to me....like when 6 of Keira's doctors/clinicians agree to come together for a care conference regarding her treatment on a Friday morning. Like being told that it will probably be a good idea for us to take K out of state to a teaching hospital for a second opinion. It's validating. It's affirmation that, oh yea, what I'm doing is hard. There's a reason I'm eating all the cookies.

So, as always, feeding has been a major issue. Keira doesn't seem to digest her food very quickly and it's hard to keep enough food and water in her so that she stays healthy. For some reason, she's seemed to have an even harder time recently. More vomit than ever and nothing seems to help. Her 3rd (yes, 3!) birthday was Wednesday and was also supposed to be her first day of developmental preschool. However, we kept her home, and will be keeping her home indefinitely, because we didn't want to add any new stressors, no matter how pleasant, that could possibly set her back even more.

Yesterday was really hard. If you asked me (like you do), whether I was daydreaming up a program for Keira's funeral, I would lie and tell you "no." When the doctors are saying they don't know what is wrong or what to do, it's hard not to picture her wasting away. And my reaction to thoughts of her death have changed over time. I mean, I still know, that in the end everything will be okay, but the idea of her dying now seems less like the natural order of things and more like a really unfair set of circumstances. How could this beautiful girl, with an easy laugh, who beams at her brothers, lights up a room, and communicates to us her likes and dislikes, painfully waste away? That's torture. But since you asked, I suppose that her funeral would include dancing and you all sure as hell better be there because the one thing I would need to know above all else is that my sweetheart would never be forgotten.

By the end of the day, I had had extensive phone conversations with two different doctors. We have a plan now, so today feels substantially better. K will have some imaging done on Monday in order to rule out a herniated esophagus. After that, we'll go ahead with a GJ tube (which will mean 24 hour a day pump feeding and no bottles) and/or a new fundiplication. I was comforted when I was able to tell my favorite doc that I'm willing to try anything for her if he thinks it's worthwhile, but that I'm not expecting a miracle cure. I told him that I want him to tell me when he feels like we are at the end of our options, and he assured me that we aren't there yet. (He'll probably be younger and cuter in my dreams again.)

We've been keeping K home most of the time. Just trying to reduce stress. She's mostly ok during the day, although a bit lethargic. We're planning a birthday party for her tomorrow and Jeff and I discussed canceling it altogether. We are going to go ahead with it. Maybe in part because we never know if there will be a next one. Stay tuned in a few days for a happier post with lots of birthday pics.

I want to thank all my friends for being there for me. For reading and replying to my random texts of panic, with little back story to make any sense of it. I love you all.