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I learn something new every day.
Kara makes me feel like I have this incredible power to retain everything I’ve read, seen, or been told. When it comes to my baby girl, everything just seems to make sense. Maybe that’s why being a special needs mom doesn’t scare me as bad as it used to.
Along with Down syndrome comes an increased risk for a laundry list of things. The list is scary, but I have to remember that these are just possibilities, not expectations and they can range from mild to serious. What this means for us is that we need to be proactive when it comes to her health and her development.
Kara has had her EYESIGHT checked twice now. The first time we were told that she has an astigmatism and a droopy eyelid. I was anxious to hear the progress at this next appointment.
Her astigmatism looks a little more balanced, which is good, but is still pretty significant. Still no need for glasses (woo hoo!), but we will keep watching her closely! I am mentally preparing myself for glasses someday – I think she’d look great in a set of peach or lavender colored frames!
There are two ways the droopy eyelid could cause problems for Kara. If it hangs lower, it might start covering her pupil and obstruct her eyesight. It could also put extra pressure on her eyeball. Luckily, we were told that there has been no change in the lid over the past three months so the plan is to continue watching it. Worst case scenario – she has surgery to fix it if it ever causes any hindrances. Hopefully it won’t ever come to that.
Next, we got Kara’s HEARING tested. We decided to get this done because she wasn’t making many speech sounds. I was desperately waiting for those cute babbles! We weren’t overly concerned with the lack of babbling because she had lots of motor development going on at the same time (see below), but we took her to the audiologist just to be safe. They performed three different tests:
1.) First, we sat in a chair in the middle of a tiny room. I had Kara facing outwards on my lap and the audiologist would move a little mechanical dog directly in front of her. After they had her attention front and center, they used sounds from speakers on either side of us to see if she responded. They changed pitched, frequency, and volume. If she responded, she would get a visual reward of another mechanical animal that lit up and danced.
She did great with speech sounds. They’d say “Kara look over here.” Or “Can you hear me?” And she’d turn towards the sound, get the visual reward, etc.
Then we moved to tones. Ocean sounds, static, whirring. She didn’t do as well on those so it got a little quiet in the cramped room. To be honest, I even started to zone out a bit. So when Kara finally responded to a sound, she got a very startling visual reward of a little white bear that lit up and banged on its drum set. Kara jumped SO high! The doctors felt horrible, but I was just trying to control my laughter. Kara startles easily, she definitely gets it from me! However, her tears were quickly faded and we moved on to the next portion of the test.
2.) After the speaker test, they inserted a tiny probe in to Kara’s ears to measure the movement of her eardrums. It was simple and quick. We distracted Kara with my sunglasses and she never knew the difference. This test produced a tympanogram which showed that there was minimal to no movement of her eardrums. This means there might be fluid in her ears. This is extremely common for someone with Down syndrome so I can’t say that I’m shocked. We have been referred to an ENT (Ears, Nose, & Throat) doctor to be sure. That test is in mid-July and then we’ll know much more.
3.) Lastly, they used more probes to measure her ability to hear high frequency sounds. Again, my sunglasses came in handy and since this was an easy procedure, it was over quickly. Thankfully, there were no issues and she passed with flying colors! Yay!
Kara does amazing in her therapies. I LOVE to learn about what we’re doing and find out how its helping her progress. With Kara, therapy isn’t as much about correcting an existing issue as it is preventing any from developing. She still sees a physical therapist, speech-language pathologist, and practices many skills in her baby class once a week.
She’s achieved so many goals since the last time I updated & was recently evaluated again by Infant-Toddler Services.
Goals That Are Behind Us:
UNASSISTED SITTING– Kara impresses everyone with her ability to sit for long periods of time. This girl’s core strength is crazy! She was evaluated at an advanced level for her age!
TRUNK ROTATION – Once we conquered sitting unassisted, we needed to push her to the next step. We wanted to see her rotating her trunk to reach things. We would set her toys at arm level, angled back behind her. This develops her core and helps with coordination.
ROLLING – Rolling is a goal that was accomplished not that long ago. She definitely held out on this one. There was a point when her therapists were getting worried that she wasn’t rolling, but then ruled that it was all her personality and had nothing to do with her abilities. (I have a feeling we are going to hear this a lot in the future.)
ARM EXTENSION & REACHING– Now that she’s rolling, she is forced to endure more tummy time and we like to see all the pushups she’s trying for. She will get her hands flat on the floor and will extend her arms to push her chest up. After she got this down, she started to reach for her toys. This takes a lot of strength and coordination so we are proud of her! All of this will eventually lead to crawling!
TONGUE RETRACTION – This is my most favorite goal that Kara has accomplished. I am big into speech and we have focusing SO MUCH time and energy on Kara’s speech-language pathology. When we had Kara evaluated this past month, we were showing how well she sits up. Her posture and coordination were outstanding – but the greatest part was when her SLP noticed that her lips were shut the whole time. She said “Do you see that right there? That is NOT typical of a baby with Down syndrome. That right there is proof that what you are doing is working.” I smiled politely while trying to hide the tears in my eyes. Inside my head sounded something like this:
AHHHHHH YAYAYAYAYAYAYAY WHOOOO HOOOO AAAAYYYYOOOO!!!
In case it’s not obvious – I am so INCREDIBLY proud of my baby girl.
Alongside all of these motor skills, we are seeing lots and lots of COGNITIVE DEVELOPMENT.
She is crossing midline like a boss. It is a really big deal to see a developing child cross midline. When I say this, I mean they use their left hand to reach something on their right or vice versa, they cross their ankles, etc. This shows that the pathways between the right-side and left-side of the brain are being built. This article HERE does a really good job of explaining.
She is imitating our actions. If I pick up a toy and drum it on the floor. She picks up a toy and drums it on the floor. If I pick up two blocks and tap them togehter, she picks up two blocks and taps them together. This is actually one of her favorite games and loves to give us big smiles while doing so 🙂
She knows the concept of taking something out of a container and can now release into a container as well. This sounds more motor (and the physical act of retrieving and releasing is) but I see this as her understanding that her yellow block is still in the box after she drops it and it disappears from her hand. It shows that our girl is a smarty-pants!
She is understanding language. Something we love to do is chant “clap clap clap clap” to Kara (without doing the action) and watch her as she grins and puts her hands together. This is also an advanced skill for her age 😉
Goals That Are In Front of Us:
- ALL FOURS. We are working on getting her knees underneath of her. Once this happens, she will start to rock back and forth on all fours. After that, we’re in trouble because this girl will be c r a w l i n g!!
- HOLDING BOTTLE. Kara has been holding her bottle for about a month now, but we are working on extending the time that she does. The bottle is about as long as she is and her little arms can get tired very easily. We are helping her work towards feeding herself the whole 7 oz that she usually takes!
- FOOD SELECTION. It has recently become very clear that Kara has outgrown pureed baby food. She has no interest in it anymore and has taken to feeding herself bits of baked sweet potato, dissolvable wafer crackers, and apple slices. I hope to see her expand on this a bit more and experiment with different textures.
- KNEELING. Right now in PT we are working on getting her to kneel. We will set her next to a step or a pillow and help her control her hips to where she can balance on her knees. We use hip helpers as we do this so her hips don’t frog out.
Everything about therapy can seem very overwhelming. It really is, even the accomplishments! I have learned to take everything in stride. I follow my heart and my gut. I know what areas Kara needs to work on, which ones she needs to pushed towards, and the ones that she’s neglecting only because of her sassy personality.
My advice when it comes to any type of therapy is to trust yourself and your instincts first, but listen to the therapists and always ask questions. It is hard work, but the payoff is HUGE!