February 22, 2011

Battling the Demons

Most days I am completely fine with Down syndrome and Rachel. Other days, like ones recently, Down syndrome gets to me. I have a hard time knowing what is typical toddler behavior and what may be a "special needs" issue we need to tackle. When Rachel was in the hospital a couple weeks ago, she didn't want to eat anything. All she wanted was her milk and that was fine by me. I could tell she wasn't feeling well. Who wants to eat when they are sick? When we came home, things seemed like they were improving. She was starting to eat some foods again. Then this weekend she just really decided she doesn't have much interest in solid foods at all anymore. She will eat cheerios and some goldfish crackers, but getting her to eat anything else is just frustrating. She'll pick up a piece of whatever it is and throw it off the tray or she'll put it in her mouth on her tongue and just let it fall out. She may even chew a little bit and spit it out.
I don't understand. She's never had a sensory issue before with food so I try not to let my mind go there but having a child with Down syndrome makes you automatically jump to "what's next on the list of things to work on." I try to let my rational mind take over - this could be completely normal. She is teething. She is still getting over being sick and coughing up stuff from her lungs. But the other side of my mind is freaking out, jumping up and down, screaming "OMG, sensory issues! Call the OT, call a food clinic, call the nutritionist! Send help! SOS!" The fact that she now weighs as much as she did at her 12 month check up in September makes me scared too. Those NICU days of counting grams never will leave me I'm afraid. These issues (of mine) are always going to be there I think. I try hard to overcome them but it's so hard sometimes. I just hope Rachel gets through this phase and starts being my munching champ again. Making food just to pick it up off the floor meal after meal can make you go a little crazy.


  1. I know exactly what you mean. I feel like my nerves are shot from this kind of anxiety-and Nava's not even a year old.
    Somehow I guess we find a way to quiet the voices. I'm still working on it too.


  2. I honestly think it's more of a toddler issue. And the slow weight gain is a DS thing I think. Our kids are smaller so when they are babies their weight gain is slower. Just saying that because almost every blog I read or friends I have on fb have the same issue with the weight. Bennett isn't losing but he's still little and has only gained a pound or maybe 2 since he turned 1 (he's 21 months now). He definitely has feeding issues so be thankful you're not dealing with that too much. You may for a while but I think she's testing you, figuring things out, wanting to know what happens when she does this or that. I've got two typical kids and they threw things on the floor all.the.time when they were toddlers. So annoying but it will get better.

  3. To me that sounds like normal toddlerhood. I understand how you feel though - always jumping to the worst case scenario. I do the same with Griffin. *hug*

  4. as a mommy of 4, I can tell you that food can become a major control issue...Rachel can control nothing else, but she can control what she eats and doesn't eat, and obviously not eating is getting a huge reaction out of mommy! Yeah!!
    But I know what you mean too about the DS, we actually have a OT/feeding therapist come 1/wk...B is finally eating table food but has now weaned herself and spits out whatever she takes from the cup (the she claps for herself, brat)....
    hang in there mama...I'd give her a week before I started freaking out....

  5. I'm not a *TRAINED PROFESSIONAL* ... Or maybe I am ... I'm a Momma, Aunt, and a childcare provider. I can tell you my experience...They all go through that phase...several times... DS or no DS!!!
    Hope my 2 cents helps :)


  6. Oh mama, I am so sorry about your added stress.

    If it helps you at all, my Lily is doing the same thing as Rachel. She is 15 months, hasn't gained anything since she was 12 months, she has now also decided that she doesn't like to eat, but has been pretty sick. We have even gone back to a bottle because it was the only way to get fluids in her while she has been sick. so we yet again get to go thru the process of breaking the bottle habit :( and praying that this is the meal that she will actually EAT again!

    I haven't had your journey, all I can say is trust your instints and know that you aren't alone!

  7. Maggie- I've never left a comment, and I don't have a blog myself, I just know that I was a part of the November mothers on WTE (one of the regulars, Bean4191) and after you had Rachel- and left us (totally understandable) I bookmarked your blog because your story touched me so much. I check it every couple of weeks, and am always thinking of you two..

    That being said, I just wanted to say- that Roegan also has a terrible time with food. We completely SKIPPED the baby food stage- she refused to have anything to do with it. There for awhile, all she would eat was cheese or Gerber crunchies. She refuses to eat food. Spaghetti here or there- pizza every so often, sometimes a banana..but otherwise, I make meals and snacks every day, and more than likely it ends up on the floor.

    I've ripped my hair out for MONTHS thinking that I was doing something wrong, that my child was starving herself, that things were just awful. We saw a couple specialists (not by doctors recomendation- but because I just wouldn't stop pushing until they sent us!) and they turned up with nothing.

    So- somedays we conquer the food issue and I manage to get something new into her- other days, she eats a few puffs and a stick of string cheese and is fine with that. It still worries me- and most days I wonder when my shining eater will poke through and she will scarf anything/everything..but until then I battle with it.

    Again- like others have said, it is very frustrating, and know that you are not alone.

    And so hoping I didn't majorly freak you out by commenting all of a sudden- but I had to share!! Take care!!


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