It’s been a little while since I have updated on where we are developmentally with Scarlette, which is a question I am asked frequently, so I thought I would write it all down. She has come so far from the day she was born and the heavy, discouraging statistics we were faced with. We are really incredibly lucky.
FEEDING: Scarlette spent three and a half months on TPN and came home on a feeding tube. Around fifteen months we started speech and occupational therapy to help her learn how to chew food and eat without gagging. She had low tone in her facial muscles and had not developed the ability to chew correctly, which would cause her to choke and gag on even the softest purees. She is no longer in therapy and she rarely gags while she eats, although she still needs her food cut into much smaller portions than her peers. Now if she starts to gag she can recover pretty quickly on her own and she will call out “I OKAY MAMA!”
She no longer has reflux at all, for which I am incredibly thankful. I was just emailing with a fellow preemie mom about what helped us with reflux. Sometimes I forget how hard those early days home were, when Scarlette was eight months old but still had to eat every two and a half hours and then had to be held upright for thirty minutes after every feeding. I was so exhausted and my husband was traveling for a new job and I think I cried almost every time she projectile vomited. I am so grateful that she learned to eat. She was two years old before she could eat solid foods so I am really proud of the progress she has made in the past year.
ALLERGIES: Scarlette has a milk protein intolerance, which is a bummer because milk is in just about everything. Her reactions to having even the smallest amounts of milk are fairly severe but not life threatening, for which I am incredibly thankful. I don’t have to carry an epi-pen, I just have to be very diligent about what she eats.
Her GI doctors call her kind of a special case because there is really no answer for some of her other issues other than the fact that all of her intestinal organs simply didn’t develop normally. So she has a lot of trouble digesting things like chicken and beef, which means that she is mostly vegetarian. We worked with a nutritionist to develop some healthy meal plans to be sure she was getting all of her caloric and nutritional needs met. It’s all kind of a mystery and sometimes we still have issues like we did when she was in the NICU with distension and such. There have been a few times we have had to have medical intervention and as I tracked her food I noticed an uptick in symptoms with anything processed or containing dyes. So we cut those out and this really was the major motivation behind us leaning towards clean eating, mostly out of the necessity of needing to have simple ingredients for her and having to make most of it myself from scratch to be sure there were not any traces of milk in anything.
SENSORY: Scarlette was labeled as a “sensory seeker” which I talked a little bit about in this post when we picked out her bedding. She prefers to be barefoot in the grass and doesn’t like soft, plush material or wet foods. She tends to only like toys that are hard plastic or wood and dislikes anything furry or fuzzy. For a long time she could only use a vibrating toothbrush although we’ve been able to transition to one that blinks while she brushes her teeth instead.
She also makes noise all day long. Literally, we have been working on “quiet time” and we have yet to make it through a full thirty second interval. Her therapists explained that she needs constant background noise and if she does not have it, she will make her own, whether she is drumming or singing or humming or talking. Mostly talking. And drumming. It’s really loud in our house for there to be just one kid in here y’all.
Her energy level is boundless. Every single time someone babysits for us, whether it is friend or family, they say to me “I have no idea how you keep up with her all day.” And the constant going and noise is a bit exhausting but I figured that I prayed for this house to be full of children’s laughter and so knowing that I would just have one child, the Lord blessed her with A LOT OF IT. Most of this is pretty mild as well, I never really think to mention it or make too much of it because I feel like it almost just straddles the line of being quirky, you know?
IMMUNE SYSTEM: She still immediately gets sick if she is around anyone with even the smallest cold, although she is starting to recover much quicker rather than landing us in the hospital so often. She has intermittent asthma, which basically means that she is only asthmatic when she is sick. She has no breathing problems any other time, but her lungs are still smaller than normal and have a lot of scarring, which diminishes her lung capacity, so when she does get sick with something that causes any sort of congestion she just doesn’t have the reserves to pull from. But so far we’ve been lucky to manage that with breathing treatments.
PHYSICAL DEVELOPMENT: Although we were discharged from physical and occupational therapy, we still continue some exercises at home on their advice because she still has a few very minor delays. She is still behind her peers in certain physical activities, for example she is three years old and she just finally figured out how to ride a scooting toy. You know, the ones meant for kids under two to ride on and sort of scoot along with their feet? Or like, the Little Tikes Cozy Coupe? Yeah, she never could figure that out. Every time we went to the doctor they would ask me about it and I was like “Nope, not yet.” Same with jumping.
She has a difficult time with balance, she is just starting to be able to lift one foot off of the floor and she can’t lift her left foot up at all without support. She also still struggles with turning her wrists and so she still can not drink out of an open cup or use a spoon easily. None of this stops her from running around the yard like crazy, playing hopscotch or leaping off the bed while yelling “CATCH ME!” before you are even prepared for that. So like I said, all things that feel pretty minor to me considering that in the early days of counting heartbeats they told me she might not ever walk. It’s not something I notice until I am watching her at toddler ballet class, being one of the smallest despite being the oldest and unable to do some of the things all of the other girls can do. She, however, has no idea that she is behind and is the best little ballerina you will ever see.
The only other thing we have noticed is that because she was on TPN for so long, her baby teeth didn’t develop normally and only have a thin layer of enamel, which makes them look very dark with clear edges. They also have a lot of grooves and indentions in them from the pressure all of the tubes in her mouth caused. So we just have to be really diligent about oral care, which was really hard in the beginning when she wouldn’t let us near her mouth but has gotten better now that we can bribe her with Buzz Lightyear toothbrushes. We’ve been told that her permanent teeth shouldn’t be affected by any of that.
COGNITIVE DEVELOPMENT: Scarlette really excels here, she doesn’t show any cognitive delays and tends to always chart higher than her age on her developmental tests in this area. This is probably no surprise to anyone, given her incredibly witty verbal skills 😉 But let me just mommy brag for a minute here. Scarlette has an amazing capacity for memorization. She memorized all of the books we owned LAST summer and would read them aloud to us. It is a great party trick. Now she can recite a book word for word after I’ve read it through twice. She can also recall certain compositions and rhythms that she hears, J or I will play a string of notes on the piano or guitar and she can play it right back to us. She knows all of her colors and shapes and likes to yell “THAT OCTAGON SAYS S-T-O-P AND DAT SPELLS STOP!” at me while I am driving.
She can count to twenty, and by tens and counts groups of objects. She’ll sort her grapes into piles and tell me “I GOT FWEE GWAPES OBER HERE AND SEBEN GWAPES OBER HERE AND DAT MAKE TEN GWAPES ALL TOGEFER.” And then I am like“SHE IS A GENIUS AND WE NEED HER MIND.” She knows about twenty sight words and is starting to sound words out to read them to herself. This happened completely by accident, it’s a funny story that I will tell another time, but I think she might have inherited my freaky speed reading skills.
This has been the most surprising thing to me because we were told so often to expect her to have learning disabilities. And she may still as she gets older and we are faced with more than just preschool but I’m pretty constantly impressed by her. She will come home from her toddler science class with J and tell me all about insects and then two weeks later we catch a grasshopper in the yard and she says “HEY MOMMY DID YOU KNOW A GWASSHOPPER IS AN INSECT AND IT HAB SIX WEGS AND FREE BODY PARTS AND TWO ANTENNAE AND ONE EXOSKEWETON?”
And socially she does not care one bit that she is smaller than everyone else, she is incredibly outgoing and friendly and plays well with others. Unless they try to assert that THEY are Elsa at the playground, in which case she will inform everyone that she is Elsa and to get out of her ice castle RAT NAO. So you know, we’re working on that whole “Only Child Syndrome” thing.
When I type it all out like this is seems like a lot but the truth is, none of it really interferes with her quality of life. Everything that we deal with as a result of her prematurity is mild, especially in comparison to the significant delays that were forecasted for us.
So that is where we are at three and a half years, just incredibly grateful for the blessing of this little fireball in our lives and overjoyed at being able to see her thrive.
