Daybue Feedback, page-48

A longish post but an enjoyable one to read the few of many positive changes Daybue is causing.



1.
Sunday will be 4 weeks on Daybue. The first and only treatment for Rett Syndrome.So far, here are the positive changes we’ve seen in the Princess (Keep in mind we’re still on a low dose. Not even half way to our target dose)

1. Better sleep. She is sleeping in until at least 9am. Sometimes 9:30/9:45am. She wakes up alert and less groggy. She takes a couple naps a day but they are shorter and doesn’t seem to throw her off. She still is interactive and her energy level is good.

2. Increased appetite. She’s always been a good eater but lately, showing a greater interest,opening quicker, chewing and swallowing better. Less holding at meals or no holding at all. This is even with her routine 48oz of fluids or more a day her appetite is good!

3. Her body is calmer and looser. Stretching, PT and transfers are better with loser muscles and less stiffness.

4. More vocal. Nothing crazy and no words but more sounds and her laughter is more “grown up”. That probably won’t make sense to you but it’s different. Still and always such a pleasure to hear.

5. She isn’t as fidgety. Her arms are staying down more and aren’t moving constantly.She isn’t rubbing her face or head as much. Hence, the ear rings and bracelet today. Usually she’d rub her head and ears so much that she’d pull them out. And rub her face so much the bracelet would scratch her face up. It’s a sensory thing but it’s improving.

6. Harder grip. When she holds our hands/fingers, she squeezes. That makes us feel so good to get that affection back.

So far, we are having no negative side effects.

Please continue to keep her and this journey in your prayers. As I’ve said before,we are positive and hopeful but also realistic. But just the few things we’ve seen have been pretty amazing!

2.
Lets talk Day 73 of Daybue..

Just under 3 mos. We have experienced quite a few changes so far. This small compilation of her grip strength and ability to hold her drink has shown improvements. She is regaining her ability to hold her drink again.

This has been beautiful to experience not on just 1 occasion.

3.
Today we did the mile walk around our neighborhood we always do. There are two bridges we walk over with a little stream flowing underneath. Sometimes we’ll walk Ellie over to the edge and show her things or look for the ducks. She has never initiated looking on her own. We always lead her there.

Today was different! Not only did she happily walk and run throughout our walk but when we went over the bridge she stopped, looked at me who was a few feet ahead, then walked over to the edge and looked down all on her own. She stood there happily looking at the water flowing underneath and we talked about everything we could see. She was so intrigued by it all! Smiling and content.

I know to most this is no big deal. But to us it’s not only huge but another example of how Daybue is making all the connections happen for her and she continues to explore and see her world in ways she hasn’t since she was little. Some days she just seems to be on fire! Like all the connections are happening in that beautiful brain of hers and today was one of those days. I love these days.

January 3rd has been a great day!

4.
To some this may not make sense to the level of improvement, But we sure understand

Some days Kinley struggles to hold a cup at all,

Others she masters the straws

and the Juice box

well those get smashed by her mighty uncontrollably hands ever single time

This is amazing what this medicine is doing for so many girls

5.
Ashtyn who just turned 12 years old on Saturday has been on Daybue since June 30th, 2023. One of our goals for her was for her to say "Daddy". Well, Saturday on her birthday, I was in the kitchen, Jerry was in our bedroom and Ashtyn was in her room watching TV. I heard her say "Da, Da, Daddy " plain as day. I went running in our bedroom asking Jerry if he heard her. He said no, what did she say? I told him. I went into her room and her TV was done playing. Ashtyn was telling him her movie was over. He needed to play something else. We always knew she knew who her Daddy is. Now we know she can say Daddy. Daddy just wants to hear it for himself.
Ashtyn will do it again. We are so thankful for this medicine!

6.
Our experience was that it took a good 6 months for our daughter's body to adjust and for the side effects to reduce significantly. It was a rough time until then and the positive effects did come and go for a while. The pharmacist and our Rett doctor weren't surprised by how long it took to truly adjust but they said that many girls do get there eventually. So I know it is really stressful and scary but it could be worth it to keep putting in the work if you have it in you. I hardly know how we got through but am so thankful we kept at it. Now she is saying some words, is so alert and great with her device, is sitting up better and can walk with less assistance for long periods of time.

7.
Day 13 of Daybue, Maggie kept trying to get where I was sitting this morning and I finally figured out what she wanted lol she wanted to talk to Santa her vocal and awareness of things has improved so much in just 2 weeks