Annelise's Great Adventure: Life with Trisomy 18: 2021

Here is an update on all the things! Or the highlights and lowlights anyway.

We found out not too long ago that Annelise has scoliosis. She got a soft brace for it, but we were having trouble finding any time for her to wear it during the day, because she eats so often and she did not like to be squeezed into this brace with a full belly! I wouldn't either! So they made a larger cutout in the front to hopefully make it more comfy, and give us a chance to use it enough for it to be useful at stopping her scoliosis curve from getting worse. We will work on that starting now.

After putting off any surgical procedures because we decided to not get the eye surgery for Annelise, we are now planning a new combo of procedures. We might have to wait as long as April for her plastic surgeon to be available, but who knows how the schedule will play out at this point.

We tried our best at the Ponsetti casting of her clubbed feet, but while it is a very successful method for most kids, because she has spina bifida, it doesn't have as high a success rate, and her right foot especially is turning in again, no thanks to her tendons. Since her feet aren't in the correct alignment, she isn't able to use her stander, so as to not damage her feet by bearing weight on the wrong parts of her feet.

Kevin and I are choosing to move forward with the surgery for her feet, because standing will be so beneficial for her bone health, motility, and also a different way for her to see and interact with her world!

While they have her sedated for the feet procedure, we're trying to also get coordinated with her plastic surgeon to close her cleft lip. If we want to try and close her cleft palate at a later date, we will first need her lip closed.

The third and final team member for this grouping of procedures is ENT. It has been a whole year since Annelise last had a scope of her airway. She has grown so much that now will be a good time for them to see if her anatomy will allow for a larger trach, and possible ear tubes. Last year her ear canals were too tiny to fit any tubes.

That leads me to the very exciting news! We have good reason to expect that her ear canals have gotten bigger as she has grown recently, because where she did not show any observable behavior in months past when we put her hearing aid on her.... now she has a noticeable response of wide eyes and sometimes even a startle and expression like "what's that?!?" at the tones that play when her hearing aid is first turned on!

Ever since we got the hearing aid, it seemed so useless, so this is an amazing gift to suddenly receive 😁 We put it on her again just to see what would happen since it had been awhile since we tried it out. She is responding more than she ever has before, so I'm excited to see where this takes us! It's so humbling to have yet one more thing to be grateful to God for in her life! Life with her is good! Ohmygosh so much work. But the work doesn't even tip the scale when compared to the mounds of cuteness, fun, and joy she brings🥰

Finishing off this update with some photos of the new stuff we are doing😄

We ventured out for Annelise's first play date ever with her trisomy sister Grace, and her amazing parents! It was a nice big pumpkin patch where we had space to strategically visit while keeping our distance from the crowds. The girls enjoyed themselves and their intermittent naps, and I think the winner of the day was the bumpy mini gourds that Grace shared with her buddy Annelise! An autumn sensory extravaganza 🥰

I'm so glad we did it!