I will forever celebrate the little things.
{Eyes, ears, teeth, heart, tummy}
They make up the bigger picture of our sweet girl.
Kara is normally very healthy & strong. For this we are grateful & we know that even when something may seem like its taking a turn for the worse, it is always something that we can work through.
This nasty flu season brought some of those pessimistic road blocks for our girl. We made it all the way to February with zero health issues & then she got hit hard (more on that in a later post). She’s been back & forth with illness and I noticed a HUGE change in her level of motivation every time.
Health is EVERYTHING so here’s your reminder to love & take care of your body and mind!
I’ve been writing about these details on Kara’s since her birth. You can check out previous updates under the Health & Therapy category ((HERE)).
Click below to jump to each section.
HEALTH
{Optometry}
::: EYES :::
Last fall, we had Kara’s third visit to the eye doctor & it went FANTASTIC! She’s a tad bit far-sighted with an astigmatism, but there are zero concerns. Doctor said no glasses at this time & we can push our appointments out to once a year.
We are still watching her left eyelid, she has something called congenital ptosis which is a fancy way of saying “droopy eyelid.” As long as it doesn’t worsen, it shouldn’t affect her vision.
{ENT}
::: EARS :::
Kara’s ears had been giving us the run-around for awhile. We had her hearing checked & it eventually landed us a spot on the surgery list for tubes. Basically, they found fluid in her ears causing her ear drums to resist movement, and causing her hearing issues that were delaying her speech.
We were told it’s like she was hearing underwater.
This confused me at first because she would respond to sound and was consistent with learning the meaning of certain words. It just didn’t make sense to me. We thought she was hearing fine!
This was the best metaphor I was given – think of what its like being underwater and listening to someone talk to you from above. You can hear them enough to respond and you learn what certain sounds mean (like your name), but you still can’t hear well enough to repeat them back.
After Kara got tubes in her ears, we noticed a big improvement with her vocalization!
{Cardiology}
::: HEART :::
Kara was born with a couple of holes in her heart. They are pretty common defects that will sometimes close up on their own. However, from the beginning, Kara’s cardiologist suspected that surgery will be needed.
The only bad news is that Kara still has these holes. The good news is that if she has to have these defects, it couldn’t be going better!
Her cardiologist says that her AVSD is considered a partial defect because there isn’t much back flow causing her symptoms. She says that there is still a VSD as well, but that there is a teeny tiny piece of tissue attached to one side of the hole that is slowing any back flow down juuuust enough for there to be NO symptoms.
Oh, and there is also a cleft in one of her valves, but for whatever reason, that isn’t causing back flow either. How lucky are we?!
All of this is in true Kara fashion – just enough to get attention, but not enough to actually be in immediate danger. We are looking at open-heart surgery to repair all the defects around the age of three.
{Endocrinology}
::: THYROID/HORMONES:::
This was a brand new visit for us.
Kara has Down syndrome, so she is at a higher risk for a number of things. We keep a watchful eye on her blood work for any red flags that may pop up. There weren’t any red flags on her annual results in December, but we decided to establish an endocrinologist this spring so that we were thorough with Kara’s health.
It’s a good thing that we got her set up – as it turns out, a lot can change in a few months! As of this spring, Kara’s zinc levels are low & a handful of others are elevated. All of the elevated levels are associated with the thyroid. Her TSH (Thyroid Stimulating Hormone) has doubled in the last three months so we started her on thyroid medication immediately & will re-check in a few months.
**Elevated levels of TSH indicates an under active thyroid – otherwise known as Hypothyroidism. In children, it can cause dry skin, poor growth, fatigue, and constipation, among others.
We are lucky to have such an amazing endocrinologist in our area – he plans to work with her every six months at minimum so that he has a more complete “picture of the puzzle” that is Kara. This way, he will know if something starts changing, even if the levels are still in the “normal” range. He is also very forward thinking & is watching not only the thyroid, but other things as well.
{Dentistry}
::: TEETH :::
At 18-months old, we took Kara to her first dental cleaning! The point of the initial visit was to get her familiar with sitting in the chair and having someone poke around in her mouth.
She did surprisingly well – at least not as bad as I was expecting.
Her dentist and I established some rapport and I got a feel for why I was told that she usually takes most of the patients with special needs. She was lovely and Kara responded really well to her.
One thing I learned was that they won’t do a cleaning on Kara until they get the go-ahead from her cardiologist. A teeth cleaning will stir up bacteria that gets swallowed and will sometime find its way to the heart. This bacteria likes to cling to defects so they would start her on a simple antibiotic before a cleaning to ensure her heart is protected.
{Down Syndrome Clinic}
A few months ago, Kara had her annual visit to the local Down Syndrome Clinic. This appointment can be overwhelming. It’s four hours of rotating visits with multiple doctors and specialists. We saw a pediatrician, an audiologist, a dietitian, a speech therapist, an occupational therapist & a behaviorist. I wrote in more detail on each specialist visit ((HERE)).
In short, Kara has some physical delays mainly due to hypotonia (low muscle tone) like gross motor skills and speech.
Hypotonia also causes her to have issues with digestion and constipation. Because of these problems, we have upped her fluid intake dramatically and also started her on THIS probiotic that I order from Amazon & have them ship every month.
It’s also worth mentioning that every specialist noted that Kara is a beautiful and sassy kid with amazing communication skills and some pretty awesome people supporting her every step of the way.
{Sleep Lab}
:::SLEEP STUDY:::
Kara had her first sleep study last week & it was both everything and nothing like I expected. Sleep apnea and other issues are very common with Down syndrome due to low muscle tone. For example, sometimes low tone can cause the esophagus to collapse a bit while in sleeping positions, making it hard to the necessary amount of oxygen at night.
LEARN MORE ABOUT SLEEP APNEA + DOWN SYNDROME HERE
It is recommended that all kids with Ds get a sleep study done before the age of 4; however many friends told me to do it before the age of 2 because it’s easier on both the child & parent. We went ahead and scheduled one to “get it out of the way” with the hopes that symptoms wouldn’t pop up later, causing her to need a second study.
In the meantime, I did my research on sleep apnea & was recognizing some signs in Kara. I noticed her restlessness mainly, but also, some heavy breathing and small gasps for air while asleep. On top of that, her oxygen levels were sitting a little low when we were monitoring her in the hospital last February.
The study went well. After being hooked up to about 1 bazillion wires and monitors, topped off with a gauze wrap around her head to keep everything snug, Kara slept similarly to how she does at home. They got good data & now all we have to do is wait!
I was surprised to learn that the study is broken down into 30 seconds increments of Kara’s recorded sleep (the record can be up to 1,100 pages long!!) Each page is then reviewed four separate times as they look at
1.) Levels of sleep
2,) Breathing problems
3.) Limb movement
4.) Heartbeat
It is understandable why we won’t have the results for another 2-4 weeks. It was most definitely NOT the most enjoyable experience for her or myself, but I’m confident it wasn’t in vain and we’ll find something in the results.
As she grows, I feel like I’m getting better at navigating the medical side of things. I know the best place to draw blood from, how to distract her while the doctor listens to her lungs, and the best hold for them to check out her ears.
It sounds like a LOT and it sounds very overwhelming. Well, it certainly can be. Having a kid with Ds means that there are more chances to practice these things, but honestly these things DON’T run our life.
We consider ourselves extremely lucky to avoid any major medical issues up to now & hope that it continues!
On the thyroid front, talk to her endo about it of course, but make SURE you are using regular old Morton’s iodized salt (or their fancier iodized sea salt). Long story but I went through a year of symptoms a while back, several doctors, no answers (was losing hair by the handful, lack of energy, sick a lot, etc). Every test came back in the “normal” range, but some were on the low side of normal but still “normal”. (So glad your endo is aware that “normal” may not be “normal” for her!) To cut to the chase, all my research kept pointing to thyroid, my endo was NOT helpful, just said I was “normal” and sent me away. I finally found out the USA is the only industrialized nation that does not make its food manufacturers use iodized salt. The USA is also the only industrialized nation with a huge uptick in the past 20 years of thyroid problems. I’d been using regular sea salt for years (as per the Food Network’s insistence its better- in hindsight why did I listen to them?). I immediately went out and bought Morton’s iodized salt, threw out all the sea salt. I over salted all my food for the next 3 weeks, and voila, I began to feel better. My hair grew back, my energy returned, and all my other symptoms disappeared. So, moral of the story is, use iodized salt to avoid thyroid problems.