Rescuing A Child – Part 3

First things first, So So has seen a lot of doctors, and the one thing they all have commonly told us is that it might not necessarily be that So is suffering from repercussions of drug use during pregnancy, but that it could be she is suffering from the outcome of lack of care. Though they can’t be certain of that just yet, that’s just what most have said. It’s likely that she had drug use in the first 3 months of pregnancy, but she might be very lucky and not be suffering from it now.
In order to have the right mindset when looking at Sophia’s developmental setbacks, Doctors told Mema to pretend like her Birthday was the day we got her.

So So had her shots at birth, but she hadn’t been back to see a pediatrician for shots after that. Most babies have to go back quite frequently after birth to make sure they are getting enough nutrients, gaining weight and hitting all of their milestones. She was behind on lots and lots of shots and milestones.

Over time, we have found that So So’s neglect has caused some difficulty in developing muscles. This is still slightly unclear to us as to whether its hereditary, from drug use or lack of care, but basically she’s very squishy and doesn’t really have muscles? It could be any of the above. It’s what seems to have caused her so much struggle in achieving her milestones! Poor thing… Doctors are also unclear as to the cause of this just yet, but we will keep you updated if the answer ever becomes clear.

Another thing So So’s doctors have worried about has been the size of her head and the flatness. She almost had to be stuck in a helmet for her flat head but we worked really hard to avoid putting her through that. Her head size is also abnormally small and doctors were and still are concerned about her brain development. Either she isn’t getting nutrients she needs for a heathy brain, or her skull could have possibly been fused, which would mean she would have needed surgery. For So So, this would be terribly scary because they would need to put her under for surgery, and coming off of that drug would be so hard for her… She wouldn’t be able to handle it like other kids. Luckily, She got a brain scan at Doernbechers Children’s Hospital in Portland, OR last January and her skull isn’t fused, she’s just behind and needs a healthy diet to promote brain growth. Which brings me to our next, most difficult, missed milestone.

Her biggest missed milestone, and most difficult to maneuver, is eating solids. There is a pretty short window of time where a baby naturally learns how to eat. Chewing, swallowing, and using your tongue to move the food where it needs to go is a NATURAL instinct (how neat is that), like learning to breathe. So So completely missed that window of time because of lack of attention or knowledge. Imagine a person being introduced to a solid for the first time and not having any idea what to do with it! SCARY! The window of naturally learning to chew, we were told, is between 4-7 months, and it just starts with tasting it.

When babies are developing, their taste buds change, and so does your refluxes to accept food. Most babies start Solids around 4 months, and your babies natural reflex (called the Tongue-Thrust Reflex) will diminish while your learning to eat those solids.

In So So’s case, She never got to learn any of this and her taste buds never got the chance to change. All she has ever known is a bottle with formula. She has no idea how to chew her food or how to use her tongue to help her out. She has choked several times, and now she is too scared to put anything in her mouth! Wouldn’t you be? Now that she understands that food is a bad, scary thing from her own experiences, It’s terribly difficult to try and teach her the proper way to eat and that food is a GOOD thing. There is still a huge language barrier too, since she can’t quite have a conversation yet, so you can’t tell her to chew or explain what your talking about… Especially when she goes into panic mode as soon as a spoon approaches her face. Theres no reasoning with that; especially at 1, 2, and 3 years old.

I’m talking SEVERE aversions to food you guys… She wouldn’t even drink WATER! Let alone trying to get her to drink milk instead of formula… Not gonna happen. Do you know how expensive formula is? Especially for an older baby who strictly drinks JUST that and needs more to stay full? Not cheap… If you put water or milk in her bottle, she wouldn’t touch it. Thats how seriously sensitive her taste buds were. Even today its a struggle to get her to drink water. 

Neglect is so scary.

Most people would say “just cut her off of the formula and starve her until she’s so hungry, she just takes it!” Yeeeessss I said that! I thought that would be a good idea several times. But not for So So… While that might work for some kids, So So didn’t drink water at all either. So doing something like that may cost us her life in exchange for that little experiment. 

Others might say “just start her off like a normal baby and give her puree’s and work from there.” Which is what we did. But for a kid who hasn’t had the opportunity to try anything, and those taste buds have already made up their minds in the small window of time I told you about earlier, her sensory development was very behind and tasting anything was actually painful! So for her, it was like eating a lemon, a lime or a super spicy pepper EVERY TIME! 

When we started serving her puree’s, it was the most brutal fight ever. She would cry and scream, close her mouth tight and fight as hard as she could to keep that spoon out of her mouth. And THEN, if you did get that food in there, you’re terrified because she can’t chew or swallow, AND now she’s crying and screaming and you’re pretty sure she’s gonna choke to death… Im talking full blown panic attacks! You can’t shove food in the mouth of a person having a panic attack.