Unfortunately, she is also missing a neurological function called peristalsis. This is the rippling effect that pushes your food from your esophagus into your stomach. Jordan just doesn't have it. We don't know why, it just makes it harder for her food to get where it needs to go.
Now, the description I just gave was based on pureed foods. For those of you familiar to baby foods, stage 1 or 2. Not yet to 3 where there are small chunks. We are talking smooth...like applesauce, yogurt, etc.
However, moving on to solid forms of food has not been possible because Jordan has a tendency to chew but not swallow. She, in fact, has a STRONG desire to chew! It has always been a challenge for us to find safe chewing objects. Many of you have seen her with a straw bent in half sticking out of her mouth. Although we don't feel it is the safest thing for our daughter to run around with a straw in her mouth, the alternative is that she finds the smallest crumb, lint ball, paperclip, whatever...and puts it in her mouth.
We have gone through cycles with her putting things in her mouth. Starting at around 1 1/2 she started recognizing that she enjoyed chewing and we tried using normal teethers and chew toys. As she grew older, we noticed that she was finding things left around and it became a danger to her. We have tried to be diligent about keeping small things put away. My boys have learned to be very careful not to leave out small toys, Legos, nerf gun bullets, etc. However, none of us are perfect...
Jordan spent the year of 2010 being NPO. That means that she could not have anything by mouth. We started the year with many struggles to keep things out of her mouth. Anything she could find, she wanted in her mouth. By summer, I couldn't let her outside without a watchful eye or she would be putting things in her mouth...sand, grass, sticks, rocks.
It was actually the final reason that we did not end up putting her into the ECSE classroom last fall. The teacher was extremely concerned about her putting things in her mouth and didn't feel that we would be able to get her a 1-on-1 para pro to watch her.
Some of our major incidents over the years include swallowing a small decorators nail that she found inside of a drawer to an end table. She had it in her mouth and I realized it and saw it - I laid her on her back and tried to sweep her mouth and it was gone! After a trip to the ER and an x-ray, we saw the little nail at the top of her large intestine. It eventually passed and everything was fine. Praise God!!!
The next major episode was a time she was playing in Conner's room and I heard her start to gag. I ran up and found her standing in the middle of the room with a mouthful of white paste! I wasn't sure what it was until I saw a piece of sidewalk chalk on the floor next to her with teeth marks on it. I ran her downstairs and held her upside down (I learned this after the nail incident) and swept her mouth repeatedly and then used a washcloth to clean it out. During this process, I called 911. She was still gagging but was starting to breathe normally as I spoke on the phone with the dispatcher. We determined that she didn't need medical assistance but I was then referred to poison control to ensure that there were no risks with the chalk. Again, she was fine in the end. Praise God!!!
We have had many other incidents where she would put things in her mouth and we would sweep them out. This just became a reality of our life.
By fall, we saw a tremendous improvement! I was actually able to let Jordan and Conner sit at the kitchen table playing playdoh and go in the kitchen to make lunch. I know it seems like a small thing, but for me this was HUGE!!! Although my eyes were still on her, I didn't have to sit by her side to do every activity. I didn't have to be in the same room as her at all times. I finally could let my little girl just play in our own home and not fear all the time. What a relief!!!
This past January, we headed back to Mary Free Bed for another swallow study and ended up beginning a round of feeding therapy. I think that opened up the floodgates! Within the first week of therapy, Jordan took the cork hot pad off the table following dinner into her bedroom and took several bites out of it and started gagging on it. (see pic below of what we pieced back together afterward.) A 1/2 hour later she was on my bed eating a tube of chapstick that was on my nightstand.
We have had several incidents since then and they just keep coming! Since this past Friday, she has gotten something every single day! Friday, she got some pretzels that we had been snacking on while watching a movie during her naptime. After she got up, she found the bag of pretzels! Because Derrick and I were both here and she wasn't gagging, we actually took pics and video.
Saturday, she found a jelly bean that Conner dropped after doing a devotions with the different colors of jellybeans and a little Easter poem. That time she started gagging. On Sunday, she found an ice cube that had dropped on the floor and was licking it. On Monday, she took an old tangerine out of the trash (I had just cleaned out the fridge) and took it out to the living room and took a bit out of it.
Yesterday, Conner had wanted a cookie but I wouldn't let him have one so I told him if he was hungry to go get an apple. I was down in the basement at the time. He went upstairs and got one out of the fridge, but also got the apple slicer out of the drawer. He left them on the kitchen counter and went into Jordan's room to play with her. At some point, he came down and Jordan found the apple and slicer and took them into her bedroom. After a few minutes, Mak went to check on her, and found her in her room with several bites out of the apple and the slicer on the floor! He brought her down to me and I got the apple out of her mouth.
I broke down.
I was so weary.
I was so scared.
How much more of this would it take before something would seriously get lodged and she would silently choke?
As much as I hate the sound of her gagging, it means she is still alive. I fear the day that I don't hear that sound and in the silence, assume everything is okay. I try every day to keep my home a safe environment for my children. Unfortunately, I feel like it is an impossible task with a child like Jordan. Everything is a risk because of her curiosity and strong desire to eat. She doesn't even distinguish between food and non-food very well. I feel like our own home isn't even safe for her.
Today, I am going to attempt to go through the house and find any risks and either collect them or write them down so we can secure them. We still have child locks...but only on some cabinets and drawers...and I think we need them on all that contain something she could get her hands on. We have to create a safe environment, both for her safety and my sanity.
I sometimes long for the simple life.
Wonder what it would be like to not worry all the time.
Yearn for extra energy to face all of the situations that drain me every day.
...and then crying, I look into the face of my beautiful daughter...and I know that my God and my Creator will help me to handle these situations. He trusts me to care for her. He gives me strength to face every day.
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