It has been 6 months since I posted this blog. In it I mention Layla's eating issues and how it had stumped us and others. It has been about 5 months since Layla started therapy for her eating troubles and although it is getting better, it is still something we struggle with.
It has been about a year since we started to notice something was up. If only we would have known then what we know now! I had no idea this was something to be concerned about, no clue that there was even such a thing as therapy to fix it...no idea that it went further than just trouble with food.
I know I complain about this a lot, but I've never really explained it to others because I didn't (and still don't fully) understand it. The reason I'm taking the time to do it now is so that #1- In hopefully in another 6 months from now I can forget about all this, look back and laugh and #2- maybe someone else can benefit from this post. I've been lucky enough to have a FaceBook friend (thanks Hillary!) that's been going through very similar issues with one of her children and have been able to ask her questions and at least have someone that understands.
So here is Layla's story and the progress she's made.
We knew from birth that Layla wanted to do things her own way (aka, the lazy way). While we were still at the hospital she started to refuse to nurse. Not a big deal the nurse told us, nursing is hard work for both mom and baby. They told us to keep trying but that we'd have to supplement with formula since she was losing weight. They tried using a medicine cup to feed her and that wasn't working so they tried a bottle. She was hooked and wouldn't go back to nursing. Our little stinker was just showing us who was boss at an early age.
So I pumped and Layla drank out of a bottle for 7 LONG MONTHS. I don't know many people that have gone this route so I relied very heavily on the internet and resources like KellyMom to keep me going. I was so excited when it was time to introduce solids. It was something new, fun and entertaining to watch her eat green beans, sweet potatoes...and she loved everything. Finally, feeding Layla was getting easy. I'd listen to other people tell us "I can't believe she eats that, my baby wouldn't touch ______". If it was baby food, Layla would eat it.
I can't remember exactly when we started switching Layla to 3rd foods (the chunky kind) but the first few times we tried it, she gagged. Like major drama queen throw up kind of gag. We tried not to laugh but thought it was a little funny. I was warned that that might happen and it is totally normal. Again, it was "keep trying" by our pediatrician and "she just needs practice to figure it out".
At 10 months Layla still wasn't holding her own bottle or feeding herself. I thought she was just a diva (and had been grossly spoiled) so again, we just kept trying. She finally decided to pick up the Gerber puffs and would hold her bottle (sometimes) and her sippy cups. But her main source of food continued to be 2nd food baby food.
Finally around 12 - 13 months I thought she was getting it. She still ate baby food but would feed it to herself and was a wiz with a bowl and spoon. She would eat bread, gold fish, some cheese...but all her food had to be a shade of yellow and crunchy. I thought she was just being picky and again...just kept trying.
At her 15 month appointment our new pediatrician here in MI voiced their concern for the first time. They mentioned that some kids have trouble with food, that it was more of a sensory thing than a taste thing and that if it didn't get better or got worse by 18 months, we needed to look into therapy. I left sad that I thought Layla was falling behind. She wasn't talking much and now she has an "eating disorder". I felt like a horrible parent, that I did something wrong to cause this...started regretting staying home with her, then started regretting that I ever worked. Just trying to figure out how in the world this happened. I decided I was going to fix this myself and make her all better by 18 months.
Layla had other ideas. Around 16 months she basically stopped eating. I know at least 100 people told me "she'll eat when she's hungry" and so keeping along with the story of Layla's life, I just kept trying. Nothing was working so I took her to the doctor and they recommended I start taking her to Occupational Therapy for acute Sensory Processing Disorder. Now she had been tagged and I felt totally defeated. There really aren't words to describe how sad, frustrated, horrified I was about this. It sounds really stupid, and I am so lucky that I have a healthy child...I know things could be so much worse. But something about hearing the word "disorder" just really made me feel awful.
So we started going to therapy in May. Two times a week for about an hour, or until Layla was "done". The therapist handed me a bunch of reading material at our first session. Taking all this very seriously I read every article, twice, and came to the conclusion that not only did I have this as a child, but I still had it. I hate slimy things, can't stand to be dirty or sticky, can't swallow apple peels...Great, now I need therapy. I decided at the next session to ask the therapist for a two for one special, we are in this together.
Obviously when we went for the next session our therapist laughed. She said that these things can be picked up from parents but it wasn't my fault that Layla had "issues". We made a list of all the things we needed to work on and it made me realize, this was more than just food. I never saw it before she mentioned it but Layla HATED to get messy when she ate. Obviously a huge problem when you are trying to teach your child to eat.
We've worked for the past 6 months on getting her comfortable with her hands being sticky and slimy (I cringe through those ENTIRE sessions). We work in rice boxes to get her comfortable with things that are out of the ordinary (think sand...thank God we go this down before vacation). She's working on desensitizing Layla's mouth...basically shoving spoonfuls of applesauce, pudding...into her mouth so she can learn what to do with it while its there.
That is the hardest, most stressful part. Watching your child scream, huge tears running down their face and then throw up because they can't swallow. It sounds silly but it is absolutely heart breaking. I don't think a lot of people I've talked to know just how stressful this therapy is for her and me for that matter! I'm so happy to report that when we try these things now, she just gives us an evil eye and swallows. And we laugh every time.
I think the most frustrating part for both Bryan and I, and Layla is the fact that every meal...3 times a day...is stressful. We walk on eggshells when it comes to meal time and it has become the same routine for the past year. Layla gets 1 thing she loves, 1 thing she sometimes eats and 1 thing that's new or that she hates. She can't have anything on the same plate or she doesn't eat. She has to get those things "served" to her (LOL) in that order or she doesn't eat. She has to have a toy on the table that she can feed, or she doesn't eat. And if you give her one wrong look, talk to her the wrong way, leave the table for anything or the dogs bark...she's done. It sounds absolutely ridiculous but the test of time has shown (well, okay...at least the last year has shown) that this child will not "eat when she's hungry".
Our Mexico vacation has proved just that. She went a week living off a few french fries here and there and doing nothing but drinking apple/pineapple juice and milk. Kids with these issues don't eat when their hungry. I know, I can't comprehend it either. The closest thing I can come to it is thinking about having all my food taken away from me for a week and then giving me the option to eat a bug. I would honestly rather die, a no joke. That is what most food is to her, a bug that she can't stand to touch let alone put in her mouth.
Some people probably think we baby her. That we shouldn't revolve our meal time around what Layla wants and to stop stressing ourselves out about it. But if you knew your child wasn't growing, wasn't gaining weight and you've been told to "do what you need to do" by your pediatrician, wouldn't you do the same thing?
Other people have said that I stress out about this too much. Even Bryan at times thinks I'm being crazy. The truth is, I know I'm being crazy. I'm crazy because I don't even taste my meals anymore, never get to eat anything hot...because I'm trying to convince my toddler to try a banana, or convincing her that the piece of spaghetti she's holding in her hand isn't going to bite. Or that teeeeeeny tiny dot of milk that she spilled on her hand isn't acid. Every. Single. Meal.
But it has gotten better and continues to get better. Layla will eat all colors now, has at least tried most textures (still working on pudding and such) and her hands and feet can get messy, for the most part. I on the other hand, still need to work on my messy skills. LOL
We have come such a long way in a year. Sometimes, Layla even laughs will we eat. It sounds silly but even if she didn't eat much or try anything new, her laughing at the table (instead of screaming the minute we put her in her chair) makes all the hours we have spent at therapy worth it.
I obviously know that there are worse things out there than your child being diagnosed with a problem like this. Every single time I want to just go cry in a corner about it I remind myself of this. And I also realize how ridiculous this all sounds to someone that has never had a child with this type of an issue. The truth is, we are so blessed to have this being the most frustrating part of our lives. And all the drama aside, it has really made me a much better parent. I am not a patient person, at all. This has really taught me the importance of being patent, taking a deep breath...and has helped me parent Layla better in every aspect from eating to bedtime to discipline.
I hope that people stumble upon this blog, knows someone that has these warning signs or sees it in their own children and passes the info along. Layla would have been in therapy at 9 months had we known this was an issue and had our pediatrician had the guts to tell us something wasn't right. I can't help but feel like she'd be eating a cheeseburger now if we would have known. LOL.
So that is Layla's eating (or lack of) adventure. Now, we just need to get this child back on track with her sleeping (or again, lack of) adventure and we'll be set. ;o)
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