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.
