So's medical findings:
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.
& When they happened:
Holding her head & Rolling over:
Holding her head up was a tough one for her to overcome, but it happened pretty quick. I would say after about a month she was able to lift her head up when she needed to. She always needed a little extra support for her head. For a while I thought maybe it was just heavy because she was such a cute little chunk at that age so maybe her head was too big for her weak muscles, but as she’s grown, we see more of the muscle underdevelopment issues when it comes to this. For probably the first year, we had to sew little pillows on the back of most chairs so it could support her head while she was in a high chair or a little jumper.
You can see in the pictures above that she gained the strength to lift her head up, but she always needed to rest it on something if she was holding still and often took frequent breaks. Tom sewed a little black pillow on the back of that jumper, you can see it a little bit there.
Sitting happened for her on the 4th of July! Just after her first birthday. I have a video of it and everything 🙂 She was so wobbly but she was also very proud of herself. The trick with this one was using her interests to our advantage! In her case, she didn’t love food or toys too much, but she LOVED to look at herself! So I pulled out a big floor mirror, propped it up against the couch and we sat in front of that. She wanted to see herself so bad, it forced her to use some strength to hold herself in that position to look in the mirror.
*P.s: Sorry for the bad filming and the mom-ish baby voice
Crawling took a very long time! There for a while I wondered if she would completely skip crawling and just go straight to walking! But walking took a lot longer. It looked like it was hard for her to lift her head in order to crawl, and she could NOT push up with her arms. When she tried, it was just forehead to the floor and then she’d roll out of it. But like I mentioned before, she’s had trouble gaining muscles and her joints are very weak.
Since she didn’t have the strength to crawl just yet, she literally rolled everywhere! It’s so funny when I look back on that. She would just scoot herself around on her back into the right rolling direction and then roll all across the house.
Crawling happened at about 1.5 years, and even then, she favored the roll. As you can see in the video below, she struggled with strength in her neck for quite a while and had to take frequent breaks. But if we look at this like the doctors said we should – like her birthday was the day we got her – then she’s basically crawling at 9 months old! Which is right on track.
She starting pulling herself up on furniture at 1.5 years old, just a couple weeks after she started to crawl. You can see in the video below how weak she still was in her arms and legs, and even with her head, at 1.5 years.
Walking took a long time! So So was almost 2 and a half when she started to walk. By the time So So started walking, Holly was learning to walk too. Holly was 9 months old, on the earlier side, but I think she was jealous that So So was getting to do this new cool thing and that motivated her to try too. So they got to start walking together!
But again, if we look at it as if her birthday were the day we got her, she’s walking at just a few months under 2 years old! Doing good.
When So started walking, it was very hard because her ankles had no muscles to hold her feet straight, so even now her ankles are rolled inward when she walks and she walks with her feet out in order to keep her balance. Walking and balancing is actually something she still struggles with at almost 4 years old.
Sophia’s diet was strictly puree’s. We had to force feed her 1 meal a day to start out, then 2 meals a day once she got that routine down. We fed her all kinds of puree’s through tears and screaming for probably 2 years. It was always a fight. It wasn’t until she was about 2.5 years that she started to really just accept what she was eating so that we could teach her to use a spoon all by herself. I wouldn’t say this milestone has been met yet, but we are making progress in this area.
*A little back story
On her first birthday, we attempted to get her to try frosting, because what kid wouldn’t love that!? We still didn’t know the severity of her sensitivity at this time, and I remember Mema saying “Even though she hates to eat her food, my goal is just to get her to try the frosting on her first birthday cake!”
We really didn’t know just how long that would take.
Since then, Sophia has changed so much and I can’t wait to tell you all about it in Part 5! In that video you can see how she even just hates to have the frosting on her hands, that has not changed at all… The sensitivity all over her body is pretty extreme and she flips out when anything is on her… Even a drop of water.
Like I said, this milestone hasn’t exactly approached us yet, but the progress is finally there! We will be talking more about this progress a bit later.
I also just want to add how scary this process has been. If you are dealing with a kid like this, my advice is don’t rush it. We have thought numerous times that if we just got So So brave enough to PUT something in her mouth, she would know what to do with it… That couldn’t be more wrong. There is not enough information out there on kids like this so we didn’t even know that a kid could NOT KNOW how to chew something or how to move it around with her tongue.
So here is a little nugget of information for the internet:
At 2.5 years old, we got Sophia brave enough to take a Goldfish… And though that was very courageous on her behalf, the knowledge on what to do with it was not there… So she just tried to swallow it. It got stuck in the back of her throat because goldfish are kinda sticky… I had to put my entire fist in her mouth to fish it out. That wasn’t the only time this has happened for her either.
Now, you can imagine, for a kid with a fear of food, this was a major set back… She was scared, she knew I was scared, and we never tried that again.
We have also learned a lot since then; not to panic if she encounters something like this so she doesn’t sense our fear, so that she can in turn know that food isn’t scary. She is changing so much in this area every day and we are so proud of how brave she has become with trying new things. My prayer for her is that she’s been too young to really remember any of it.
(This is from what her doctors have told us)
Clinically speaking, Sophias sensitivity to being touched or touching other things was due to her not being touched enough as a baby. Her sensory development was so far behind, that being touched was actually a painful sensation for her.
In order to put her in the bath, we were told to wrestle with her before bath time in order to get her sensors more surfaced. Before brushing her teeth, we had to play rough and rub our hands all over her face and ruffle her hair a bunch, again to get her sensors more surfaced. We had to continuously encourage her that dirty hands was ok, and push her to touch more strange textured things. That wasn’t easy. overcoming neglect entails a lot more than you would initially think. Even to this day if she has any speck of food or water on her skin, she’s screaming for help.
A word from Mema:
Finally! I can take her to the doctor! Found the best doctor I could have ever asked for. I knew and still know God’s hand was on every aspect of this. I got all her records transferred from the coast over to Bend. I figured Sophia was behind on her shots and her developement was obviously behind, but she’s a kid and we will get her caught up REAL FAST! Kids catch up pretty quick. Just needed some tools to help move this along. I KNEW NOTHING!
(I need to address the people in the medical profession. The group of people that were placed in our lives were the most stellar group I have ever met, EVER! Sophia’s pediatrician was very proactive and very sensitive to our situation. The rest of the teams, yes, TEAMS, were the absolute sweetest, most informative, patient, and “all in” for the sake of Sophia.)
I’ll start with the shots because that was the easiest of them all. She had her newborn shots and that is it. So catch up was intense but she did great! She is a tough little cookie and barely had any reactions to all these shots. I also feel God gave her AND me a reprieve in this area. Her doctor and I talked about her flat head. I asked him about the helmets that help with the flat heads, not really knowing what the deal was with those helmets. Well, those helmets have to be worn 23 hours a day! Not a good choice for a 9 month old that cannot hold her head up. He decided that, since she was a girl, her flat head would eventually be unnoticed due to her hair. He also held out hope that it would take back some of it’s shape. I’m glad I listened to him, as her head did take back a lot of it’s shape and you can barely notice the mishape of it now. Next thing you know, he is putting in orders for evaluations from physical therapists and speech therapists. He needed all those reports as to which direction we would be going in Sophia’s care. This was in our first visit!
That day I took her to the evaluations was probably one of the hardest days ever. The spoken truth being put out into the air. Sometimes that truth can take all of the air out of the room. My sweet little Nicole wanted to go with me. At this time Nicole was only 13, but she wanted to know what she was up against as she was going to be the babysitter for the summer, all day, 5 days a week. One of the bravest 13 year olds I have ever known. The professionals put SoSo through a bunch of tests and poor SoSo struggled through most. She had severe panic attacks. She would hyperventilate and then throw up. She did this at home at times as well, but I didn’t know why at the time. The professionals left the room for a few and then came back with their evaluations. They gave me the news…the worst neglect case they had seen in their facility since the day they opened over 25 years ago. Those women sat and cried right along with me. We all cried together. This is when they told me that she was basically a newborn physically. I was told if she had gone much longer in those living conditions it would have been irreversible damage. Reports would be sent to her doctor and then we would definitely be starting physical therapy. All the details would be worked out in the next week or two. The three of us left. Me, crying, Nicole, bound and determined and SoSo, well she was just fine. When I got home I laid So on the floor and just cried over her. Heart broken. But she was so happy and giggling and well just happy in general. This is when I started calling her my little bumble bee. If you have never heard the poem, it goes something like this…Due to the aerodynamics of the bumble bee, body size to wing ratio, he should not be able to fly. But nobody ever told him that, so he flies. Well nobody told SoSo what she was up against. Her day did not change due to the information she received, so she is going to fly! And she does, and we do together!
My advice, if you are in this situation, is to not lose hope. Many times I felt hopeless and helpless. But I had a good support group and grounded people to keep me in touch with reality. My fears that were so crippling were not as grim as they seemed. I thought I had tons of patience but this is not a quick fix situation. Do not ever, ever lose hope.
And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 1Peter 5:10
Next week were gonna talk about what happened when the one year custody hearing arrived and our poor judicial system; how we were lied to, stolen from and neglected by a JUDGE!
We will also touch base on our transplant to Spokane and Sophias adoption process.
If you have any questions, feel free to leave a comment below and we will be sure to get back to you as soon as we can.
If you are in need of more support or have questions you would prefer to keep private, you can email us directly at firstname.lastname@example.org
Mema will be available for any questions and support needed.