We had the meeting with the geneticist today. She said that Belinda does indeed have Ehlers-Danlos, hypermobile type. She also gave us some more info that I need to go through.

While we were on the telehealth call with the doctor, my phone rang and it was Children’s National. So the surgery will be at 7:30 am on Monday. We have to get to the hospital at 5 am. Nothing like getting it done right away! We will get to Washington at about 10 pm the night before.

She can’t have anything to drink after 5 am. That made me feel glad because normally she has to stop at midnight. At least she won’t be terribly thirsty that morning.

We prayed in church tonight for Belinda, and that was good. I teared up a bit. I try not to let myself really think of what’s going to happen because it’s overwhelming. I’m glad they prayed for her.

Tomorrow a nurse will be calling from Children’s National to finalize things and get us more instructions. Belinda also has a virtual visit with the geneticist tomorrow so we can find out the results from her tests.

Tomorrow is the first possible day that the Ronald McDonald House may call to let us know if they have a place for us. I’m still praying for that.

It is very hard to believe that on Sunday we will be getting on a plane to travel to Washington DC for surgery on Monday. Like I said, overwhelming.

I appreciate everyone who has taken the time to read these posts and ask about Belinda and pray for all of us. Thank you.

This morning she started taking Nystatin in prep for the surgery! She has to take 4 mL four times a day. She swishes it all around her mouth and then swallows it. She said it doesn’t taste too terrible.

I was surprised to find that I had nothing at home that could measure 4 mL, so I had to run to the pharmacy this morning, and they gave me two syringes I can use. It seems like they would have included those when I picked up the prescription, but what do I know?

Glad to have them now!

I also want to request prayer for my mom, who is very worried about us going. She keeps asking me questions and praying about it while I’m standing there, and she just seems really concerned for our safety while we’re gone. So please pray for her to feel God’s peace. Thank you!

FIVE days to go!

Things are going okay on the full liquid diet. I got some more explanation on what that is, so that’s good. Yesterday she actually got enough calories in! Today looks like it will go about the same because she’s eating around the same things. She also told me today that she hasn’t needed to cough anything up today or yesterday. That is like a balm to my heart. If she didn’t get surgery it would get even worse, but I am glad that she can still tolerate liquids all right if she doesn’t have solids in there. She said things are still getting stuck in there, but she is able to tolerate it and go slow.

So far she’s having:

Feeding tube shakes

Liquid-ish potatoes (I’m taking instant potatoes and mixing with beef broth (no water), then adding a LOT more broth, whipping cream, and butter until it is a pouring consistency, then adding gravy)

Pudding cups

Jello cups

Strawberry lemonade

Apple juice

Plum tea (this has no calories so I am meh about it right now)

Chicken broth

Ice cream bars (both ice cream with no mix-ins and chocolate are acceptable, since they are liquid at body temperature)

She dislikes the sour patch gelatin I got her, and the chicken bone broth. She agreed to try them again when she is on the clear liquid diet.

She also won’t even try the applesauce! But I’m glad that she is doing so well on this. Gotta keep her energy up for dance this weekend, and for the surgery! Her pediatrician said that if her body isn’t in starvation mode, she will heal faster and better after surgery, with smaller scarring. Even though her scars will be on the inside, keeping them small sounds good to me.

SIX days to go!

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.