Life Update - Summer Edition

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. 

Pickleball Signup

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

Life Update

Since we are "out" of the constant medical updates... I am transitioning our Caringbridge account to this blog. Here we can post updates in general, as her medical needs are less touch-and-go and more routine. I also want this to be a place to share our experience with our extra-special girl. Ours is just one story out of so many. It will also include other updates about our family. 

The last Caringbridge update was in July when M turned one year old. We are now at 21 months - almost 22! Medically, there are still things that we are working on and monitoring. As mentioned, we are in routine checkups with specialists - nothing is urgent - but we are doing the follow-ups and next steps. 

Medical

Endocrinology: We monitor her thyroid levels with blood draws multiple times a year to monitor her numbers. Once a year, we see our endocrinologist. Due to giving her the correct medication every day, the numbers have been good. Right now, she is growing, and her brain is happy. At our last visit, her numbers were in range but not optimal, so we increased her dosage. This makes sense as we haven't had a dosage change since leaving the NICU.

Cardiology: M has ASD, which means she has holes in her heart. This is quite common in those with Down Syndrome. Right now, she has an abnormality that flattens part of her heart, the opposite of where the extra flow should go. Fortunately, it is not anything we need to fix today. It will become a bigger discussion when she reaches 20 pounds and we have our next echo. 

Pulmonology: We were sent to pulmonology as a result of the flattening of her heart. There is nothing TOO suspicious going on with her lungs. They are thrown a bit because she recovered quickly during both stays at the hospital for respiratory issues. 

Our next step is a sleep study. This will look at how she is breathing overnight. Sleep apnea is super common in Down Syndrome. Unfortunately, M got an ear infection right before the initial study was to take place, so it has been postponed until October, the first opening. Our pulmonologist did refer us to the Down Syndrome clinic. We are also part of a larger team BPD clinic that focuses on getting a team together to track her development. 

GI: Knock on wood. We have not had to use the tube since October? She had one minor setback when we used it for two feeds. Like two feeds in a day out of 4 as a result of some dehydration after changing her medication for constipation, which was a change ordered by GI. So, we say that it was his fault :)  We are doing better on the digestive piece, but we still have issues and monitor closely. 

Therapies

Speech: We go once a week, every other week. She is drinking her bottles by mouth, eating bougie baby food ($2.99-3.99/pouch), and enjoying table food. She can even communicate "more" and "all done" when she wants to.

OT: This therapy is going well. She reaches, grabs, transitions, etc. 

PT: "M is on the move," says E...to everyone. He helps close a door or bring her back from where she shouldn't be. She has a goofy scoot that she does. She can pull herself forward to get what she wants, but it's not always the prettiest. She is not crazy about going on all 4s. She will pull herself to standing if she is motivated enough and wearing shoes. She does need to lean on something to support herself (like an activity table), but we are so excited about her motivation to move and do things. PT helps her learn the muscle patterns. We are getting M some "orthotics" called SMOs. It will help her stay stable while standing, but still allow flexibility in her ankles. 

Life

In addition to therapies and doctors, both kids are in swim and music classes. M loves swimming. She splashes, kicks her legs, and socializes with everyone. E is not as crazy about swimming, but he is getting better now that he has goggles. He is in a class with a parent for 3 sessions, and no parent for the next 3. Music is going well. M looks around, participates, and observes her peers. It is nice to apply therapy techniques while in music class. E is in music with just his peers, except share time once a month. He loves this class so much. He likes listening to the songs from music in the car.  E is in soccer but is not a big fan. There are too many people for his liking. Poor kiddo. He also has taken an interest in chess after seeing a picture in a book of two people playing "a game."

There is a lot of balancing right now. I don't know how J feels, but with dividing and conquering, we get to see each kid's personalities and growth in their activities. It is also fun switching out at night who tucks in which child. They both are such characters. 

We made it through tax season....and now, as we prepare for the end of the school year, we are looking ahead to summer fun. For E, this includes: swim, music, 4k prep, camps, etc. M gets music, swim, and therapy.