In May, we were hoping for some great GI news. We haven't used M's g-tube since October. We got through the "sick" months. and .... Yet, the tube could not come out.
The doctor heard what we were saying about not using the tube SINCE OCTOBER. Unfortunately, around the time of this appointment, M was sick with a fever and had dropped weight. He said we were "on the cusp" of having it removed. Let's see what she can do in a month. (That same night, J took her to the ER at St. Vincent's as she spiked a fever of 104 after being 98.6 at the doctor. Sigh.)
Then, June 24th...we had a weight check and blood drawn at our PCP. Blood draw says we can increase her thyroid meds a little more and have another draw in a few months. Her numbers are good - and in range - but let's get it to the optimal number. This helps keep her brain happy and M growing.
M did it, she gained enough weight! After having her eat sauces, dips, butter, oils, and a solid mix of table food and purees (still the bougie stuff) for a month, our GI doctor liked the weight gain. Enough so that he felt much better and could justify removal of her tube.
So, with clean and sanitized hands, on Sunday the 29th, we removed her tube. This is nothing new to us; we have done tube changes before, but there was no need to put a new one in. It starts to close within 30 minutes. Then, it will need to heal/close all the way. We need to monitor the site, keep it clean, watch for drainage (it is a hole in her belly), and take good care of it. Since removing it, we have cleaned the site and are very pleased with the lack of drainage.
How do we know things are okay?
Luckily(?), we have several appointments in July. She has her first visit to the Down Syndrome Clinic in Madison. There is a whole team that meets with us and looks at M as a whole person, not just one specialist here, one there, etc. Then, we have her cardiologist appointment - here is hoping she gains enough weight to have the holes in her heart closed, OR at least things like good that nothing needs to be done. Also, she has her two-year wellness checkup with her PCP. Three appointments in July. I bet all her doctors will take a little look at her G-tube site. HOW IS SHE TURNING TWO?!?!
What else is in store for the future?
We still have a sleep study in the Fall to see what her pulmonary system is doing while she sleeps. This will help our pulmonologist and BPD team determine if tonsils or adenoids are causing issues or if she needs a CPAP or nothing. One of our specialists has mentioned that closing her heart should help her body not work so hard. Then, every specialist is just monitoring all the things.
M continues with PT, OT, and Speech. She has some SMOs (orthotic inserts) for her to wear for stability. M is getting better at standing once in place. She is not always a fan of getting to the standing position.
The Rest of the Family
E is enjoying summer. He is in a Jumpstart to 4k class four days a week. He loves his school where 2 hours feels like 10 minutes - his words, not ours. He also has spent time in swim lessons with his buddy El. Dunking under, holding his breath, and jumping in are all favorites. We have also participated in other community events and music classes. He will also attend three different weeklong morning camps this summer.
J is just adapting his schedule to help with overlaps in the schedule. I tried to make the appointments while E is at school (or upcoming camps).
I just got back from Waco, Texas. I attended the Tyrolia Literary Institute. I first went 7 years ago, and it transformed my teaching...and then, seven years passed. This institute was even more amazing than the first with the addition of more presenters, the Little Red School House, and time to read and write. I was able to focus my writing on grief, jealousy, and other emotions related to M. It was really a neat process including getting to confer with one of the authors and receiving some great feedback on my writing.
There was sadness as the owner of the ranch where the conference is held had passed away two days before the start. (https://www.facebook.com/share/p/12Lzh4UDKML/)
Oh, and we have a new friend. Juliet returned to Wisconsin with me. She is a mini English Doodle with petite King Charles Cavalier. She was born on Valentine's Day. It felt a little fated that I was able to bring her home when returning from Tyrolia. She is adjusting to life in Wisconsin. E is a doting big "puppy brother," and M has a love/annoyance relationship. Juliet loves to lick her face and run literal circles around her.
Down Syndrome Walk 2025 - Team A-Maizy-ing
Feel free to join us on September 27th at Harbor Pointe Mini Golf. If you can't join us consider donating to our team, becoming a sponsor, donating a raffle item. Let Cathy know!
https://secure.qgiv.com/event/dsawsheboygan2025/
... and other ways to support our local DSAW
Our DSAW chapter has a permanent home in Glenbeulah. There are needed items for the building. Check out this Amazon wish list:
https://www.amazon.com/hz/wishlist/ls/4V6QH47FH95R/ref=hz_ls_biz_ex
Is Pickleball your Jam? Sign up for a double-elimination doubles tournament on July 26th in Sheboygan.
As always, things are crazy, chaotic, and challenging...but I often go back to a favorite quote, "If you think our hands are full, you should see our hearts." Thanks to our wonderful friends, family, babysitting crew. We got a lot going on... and it truly takes a village.
=C
Helping Dad
The healing begins
Snuggle Buddies
Sweet puppy kisses
Where Mom went to learn
