Hi friends and family!
Sorry for how long it’s been since our last update. Early on, Kate’s Dr shared that you hear the bad stories posted online but not the good ones because people get busy with life. We can relate. Here’s an update of where we’re at currently.
We are now less than a month away from the 1-year anniversary of us going in to the hospital for the wait. Right now medically, Kate is very stable. We recently had a clinic visit with the director of the transplant team and Kate’s new heart looks phenomenal. Everything is pumping as it should and working well. That said, Kate is still on lots of medications and still technically in acute heart failure. This just means her new heart and lungs are still working on recovery from the pre-transplant state. Audrey and I were a bit disappointed by this news actually. It feels like a long time since transplant and we see how much is still affecting her. We are firmly a hockey-stick trajectory and are solidly in the flattening out phase.
Kate is firmly a toddler now. She’s finally starting to talk very small amounts. Simple words like momma and dad and she’s exploring other sounds but not much more. She’s still very good at communicating…she just uses lots of signs. Speech will come. She’s also running around like crazy. At the MN Zoo this week she was climbing all over a small climbing wall and doing amazing!
On the eating/feeding side, Kate only needs to be hooked up to her food 5 times a day for a total of just over an hour during the awake hours. With the loss of the iv meds back in February, she has tons of freedom and really enjoys it! We are still struggling a lot with food overall. So far Children’s Hospital has been a total failure on feeding assistance. Kate shows lots of interest in foods but needs some help working on things like chewing and swallowing. Hopefully we can find someone who can help soon. It’s been quite frustrating having everyone get this “deer in the headlights” look and say “that’s not my area”.
Activity wise, this Spring Kate attended an Early Childhood Family Education class with Audrey weekly this spring and she loved it! She had tons of fun interacting with the other kids and staff. Kate is clearly the silent observer. She LOVES “circle time” where everyone sits in a circle, sings songs and such. When she got to class, she would go up to the visual schedule and steal the circle time picture and walk around with it! She won’t participate though. She just sat and observed everyone else and she had an absolute blast with it. Audrey and Kate are making it to the local water park’s 1 hour of toddler time regularly. Kate is having tons of fun splashing, playing and observing!
Kate loves being back in the world. She occasionally gets to go grocery shopping with me and absolutely loves watching and helping with everything. She loves parks with playgrounds and will enthusiastically point them out to us and urge us to stop. She loves taprooms. All the people, dogs and everything! We were at one recently where we were seated outside next to a retaining wall. She moved a sizeable pile of mulch from the flower bed to the picnic table we were sitting at…one tiny handful at a time.
Kate is regularly bossing us around. She is bossing her special ed teacher around and she is bossing ECFE class around. All without words! She herself dragged her ECFE class from their scheduled nature area play time over to the toddler play structure she saw in the distance.
Kate is crazy picky on music. She has decided she is done with Trolls now and music from the Frozen movies is OK now. She was in a phase where she loved Fireball by Pitbull for a while but that’s over now. Today she was asking for some music that related to her baby doll but Audrey and I are still trying to figure out what the heck she is talking about.
We are finding that beyond the heart stuff, Kate is very sensitive to lots of environmental things. Noises, touch, new places, new people. More so than other kids. We’re seeing more and more indications that she may be on the autistic side. It’s been tough trying to find someone who can help give a formal evaluation…so far either they aren’t taking appointments or they are 18-24 months out! We are on a few lists and were able to get an initial “Rule-Out” diagnosis of Autism but that’s just preliminary. Why are we concerned about this? Primarily because we hope it will open up other support resources and allow us to give better direction to her therapists regarding what is appropriate for Kate and what is not.
Anyway, that’s the long and short of life lately. Here are a few month-by-month photo albums to check out and see what we have been up to.
Thanks for all the support! Sorry for the lack of updates. Life is crazy still and there is very little down time to sit and write.
And some more photos!
