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We joke that being a baby is hard work. They are on a constant cycle of eating, sleeping, and pooping. Simple. All they have to do is let out a cry and adults come running to the rescue. How much easier could life get?
I recently read an article that said that we should put ourselves in our baby’s shoes. It talked about how we can get easily frustrated with an upset baby, but we need to remember that they are just frustrated as we are.
My life has changed too, but it’s no where near as significant as it has been for Kara. I might be losing out on things like sleep and a social life, but at least I can do something to make myself feel better. I can draw a hot bath or feed myself when I’m hungry. Most importantly, I can express those feelings! Here I am, spilling my heart out each week as I type out my feelings with my fingers. Imagine wanting to say something, but being trapped in a body that won’t cooperate. Being a baby IS hard work!
The ability to communicate properly is crucial to living in the real world and understanding this proves just how important it is to develop the right skills. Kids with Down syndrome may have a little bit more trouble with this at first. This doesn’t make them less than anyone else, we just have to pay a little more attention.
We don’t know what obstacles Kara will need to overcome as she grows and develops, but we will be here to help her every step of the way. To do that, we need a plan and we decided to jump right in! For those that are curious, I thought I’d share what a 6 week old baby does in therapy, how it works, and what goals we are trying to meet.
We’ve recently met with two different organizations that will be working with Kara as she grows older. Both organizations will cover the same stuff, but will take different approaches. The first is a program through the county and varies from state to state. In Kansas it’s called Infant Toddler Services. They will come out to our house once a week to work on certain goals that we’ve decided on as a family and as a team. The second program is through the LeeAnn Britain Infant Development Center. We will visit them twice a week to work on Kara’s physical therapy and to participate in her group therapy. This gives both mom and baby a chance to get out of the house and socialize!
These programs will focus on any developmental delays that Kara may face and they will help guide us through the process of overcoming them. So far we are very impressed with the treatment she’s been given and she loves the attention! She sees physical therapists, occupational therapists, and speech pathologists, as well as several new friends in her group therapy class 🙂
We started off by completing the intake and evaluation processes for both programs and afterwards decided that our main focus (for now) is on Kara’s physical therapy and speech therapy.
Physical therapy>>> PT will work to improve her alignment, focus on her muscle tone and build strength in her core. Right now, we are looking for her to keep to her head in midline, bring her hands together, and hold her head up. To help her achieve these goals, we have her exercise by laying on her side and her tummy.
When she lays on her side, her head is in midline with her back and hips which helps her muscles develop correctly and makes it easier for her to control her arm movement. She is learning that when she flexes outward she can roll onto her back and when she flexes inward she can roll onto her tummy. She made it from side to tummy just this week!
Tummy time is pretty self explanatory and is good for strengthening her neck, shoulder, and back muscles, and its also great for oral stimulation because we place her fists underneath of her chin when doing it. We do a lot of tummy time in our recliner. Kara will lay face down on our chests and try to look up into our eyes. She surprises us with how long she can hold her head up. It’s my favorite thing to do!
Another goal we are working on is her visual tracking. Right now she is having a little bit of trouble focusing so we will be keeping a close eye on her (no pun intended). Poor eyesight is extremely common with Down syndrome. Over 50% experience trouble with their vision. We are prepared for the possibility of the glasses, but only time will tell if that’s what we are facing. We are taking it one day at a time.
For now, she really loves her “Happy Apple” which is great for exercise because its easy for her eyes to lock onto, plus it makes a nice chime sound that seems to soothe her (without annoying the adults). We came across this toy in her first baby group class. All of the kids were enchanted by it, including Kara. The big red sphere and happy face really catches their attention. It is easy to be a fan. What’s funny is that Jacob had recognized it from his childhood! Luckily, it was still in his parents attic and we were able to present Kara with her very own apple! It’s so neat to see her play with one of her dad’s old toys! You can find something similar HERE.
Speech therapy>>> It seems silly to think of a 6 week old baby seeing a speech pathologist since the only sounds she makes are associated with yawns and whines, but these sessions initially assist in her feeding. We look at her ability to suck, her latch, and at how she’s using her tongue.
As a matter of fact, we’ve already made major progress! From the get-go, we had trouble breastfeeding because the low muscle tone in her jaws and throat made it hard for her to latch, suck, and breath all at the same time. Kara would wear out and fall asleep within minutes of nursing. In order to encourage weight gain, we had to bottle feed her using a special bottle kit like this. The blue valves sit in the nipple and make it very easy to extract milk. After just a couple of weeks, we were able to remove the valve and work on feeding from a regular nipple. This just shows how strong she is getting! Her feeding times have cut in half and we are getting closer to transitioning to breastfeeding full time (slowly, but surely).
Kara seems to be right on track and is getting stronger every single day. I swear she changes overnight! Her grip is so tight that I’ll probably be getting a shorter haircut here pretty soon. She is consistently gaining weight (a good sign that her heart is doing its job) and is sleeping between 3-4 hours at a time.
All of her therapists seem to be very impressed with how well she’s doing. So far, we don’t have many obstacles to overcome and we recognize how lucky we are for that. Kara makes us so proud and I know that will continue. We are so happy that she’s ours!