We went to see her pediatrician today and she was up seven pounds from ten days ago! The doctor was really happy about that and so were we! I know some of that is because she was so close to dehydration earlier but hooray!

Belinda told the doctor that it was all me, and that made me feel really good. However, Belinda deserves a lot of credit too! She doesn’t like drinking the shakes but she still forces herself to do some every day. Not the four I wish she’d do, but two is definitely better than nothing.

I also think that seeing how well we did will help motivate her through the next three days of full liquid diet and then the three days of clear liquid diet.

I talked to some of the moms on the achalasia group on fb, and the doctor, about what’s allowed on full liquid diet and she can have pureed potato soup or really thin mashed potatoes pureed! She was really happy to hear that, and that’s what I’m making her for dinner tonight – really thin mashed potatoes with broth in them and maybe a bit of cream, covered with gravy.

Right now she’s on a zoom call about her Harvard summer school classes, but I’ll get her dinner ready when she’s done. She’s killing it!

Full Liquid Diet starts today! This is challenging for me because we were only given a basic idea of what is okay to have and what isn’t, and I really prefer having defined guidelines with this sort of thing. I did find a list online that is helpful.

The short list the hospital sent had thinned cream of wheat on it, but she’s never had it. She does prefer savory things to sweet, so I guess I need to buy some and find out. Marissa always liked Malt-o-meal, and I guess that is the same thing? I always associate it with her. I’ve never tried it.

Internet said anything that will pass through a wire strainer, basically, is what she can have. That is very helpful.

SEVEN days until surgery!

She did really well at the dance competition all weekend, and I’m super proud of her. Today she had chili for lunch and I don’t know if she’ll have any other solid food before bed. I had her drink one shake but didn’t push any more. Today is her last day with solid food before surgery. Tomorrow we go to full liquid, and then Friday we go to clear liquid.

I found some Clear Boost shakes that say they’re strawberry kiwi flavor and are designed for cancer patients. They were $20 for three, so I only got that, in case she doesn’t like them. I had to get them shipped. They each have 300 calories. I’m thinking one each day of the clear diet, along with other drinks and broth.

Eight days to go.

Belinda did great with her solo at the dance competition tonight! I really have been pushing the nutritional drinks on her to get her calories high enough to have energy. It was super nice to see that it had a real effect and that she was able to do what she loves.

Tomorrow she has one dance, and then her other dances are on Sunday morning.

I filled out a financial aid form for OU Children’s Hospital and I’m going to go mail it today.

I also did an online application for Rare Pediatric GI Medical Assistance on the National Organization for Rare Disorders website.

I wanted to put these here so I would have a timeline to look back on. OU says they need 30 days. The NORD one didn’t have a date to look to.

I don’t know how much we will end up having to pay for the surgery and hospital stay, since it will be out-of-network for our insurance, so maybe this will be helpful.

I thought these were good images to compare how the normal esophagus looks vs. Belinda’s, which with is type 2 established achalasia. The top part is stretched out because the lower esophagus won’t relax and allow food and liquid to go down easily.

Final image is an explanation of the different procedures they use for achalasia. The reason we are going with POEM is because she is so young that this the the best option for her. Botox and balloon dilation causes scarring that would get worse with each treatment. Also, her esophagus is so tight there was concern that it would tear if they tried a balloon dilation. Heller Myotomy is an open surgery, with incisions on the upper chest area. POEM is endoscopic and should have a much easier recovery. This chart says that it can be difficult to find a doctor with experience in POEM, but Dr. Kane and Dr. Petrosyan have performed more pediatric POEM procedures than anyone else in the country! Considering how few children develop achalasia, that means a lot of parents put their trust in them.

Eleven days to go.

Welp, got a new bill from OU Medical/Children’s and we seem to owe $10,000 so we had to take a hard look at our current payment plan. Now we’ve got it spread out monthly until 2029, good times.

I printed off a financial assistance application from the website so we’ll see how that goes.

My pessimistic side says it will go poorly, but I thought the same thing about the genetic testing, and we got aid for that so it’s not over til it’s over.

I’ve also seen some things about assistance for rare diseases in children but it all seems pretty overwhelming to navigate.

Today I got an email from the Ronald McDonald House requesting the names and birthdate of everyone who would be staying there (if we get in). They will do a background check on me with the info. Not Belinda, since she’s under 18.

They also sent a video that made me feel a lot more comfortable about staying there. I don’t like going into anything where I don’t understand how it works, or the rules and what to expect, and I’ve done a lot of googling on the Ronald McDonald House but found very little about actually staying there. Most of the info online is about donating or volunteering there. So the video was super helpful. It’s unlisted on youtube, so I couldn’t find it through search.

It didn’t say I couldn’t share it, so here’s the link if anyone else wants to have an idea of what we can expect there: https://www.youtube.com/watch?v=c-j1ICs4WM0

I’m praying we get in. I looked at some hotels but they’re all so high and geared towards tourists. I also looked at airbnb and found one I liked but I can’t cancel and get a refund after April 16, and I don’t expect to hear from the Ronald McDonald House that early. So I’m just planning to wait it out, and make a last minute hotel or airbnb reservation if I need to. It’s hard because I don’t know how up to walking Belinda will be afterward. I’ve been on the Metro in DC, so I feel somewhat confident in that. It looks like the station is a couple of blocks from the hospital. I think it’s odd that there’s not a station right by the hospital, but what do I know? I found a few hotels that are also a couple of blocks from a station, so maybe that will be our game plan.

There’s a Motel 6 in DC that is cheapest but I also don’t want to be anywhere scary. I suppose I’ll need to research more at tripadvisor. There’s just so many factors to consider and it gets overwhelming.

I need to re-download the Uber app and make sure I remember my account information, in case she’s not up to walking at all.

Anyway, really hopeful for Ronald McDonald House. Looks like it would be very stress-free.