Thursday, October 7, 2010

So much to do, so little time.

Eating, for the most part, continues to go fairly well around here. I have finally started to relax, even on the days where The Chub Muffin eats a little less than normal. I no longer go into full-out panic mode. I've learned to try to look at the big picture. She ate exceptionally for over a month, she is allowed to have a day here and there where her intake is down. Solids are going well. We are making progress. Her intake is still not huge but I'm shifting her schedule (which should've probably been done when we started solids) to a 4 hour schedule. The 3 hour schedule was just too much now that she's having 3 solid meals a day along with 4 bottles (excluding her early morning and late night feedings). She needs some time to feel hungry and anticipate food. I'm hoping once she's adjusted to the new schedule that feedings will improve a bit. She's doing stage 2 purees now. We're moving slowly due to her sensory issues and oral aversion. The feeding therapist said we could stay at stage 2 for a few months and be completely fine. Whenever we bring anything new into the picture it takes awhile for her to get used to it and comfortable with it, so bringing in the sippy cup has been, well.... challenging.

This girl is NOT in love with her bottle, so as far as that goes, it shouldn't be a big deal to ditch the bottle in the near future. The main hurdle will be getting her to drink from something else.

Our OT came today to work with The Chubs and she is going to request a PT (physical therapist) to come twice a month so that at our sessions she can focus most of her attention on her eating and sensory issues. One hour is just not enough to cram in everything together. Plus, The Chubs gets pretty tired and a little overstimulated with so much activity.

I'm so thankful she's getting the help she needs but I have to be honest. I am exhausted. I'm tired of not only trying to feed her everyday and deal with refusal, but spending every other minute doing therapy exercises. I literally can not even count or remember all of the exercises I should be doing with her on a daily basis. There are a million feeding exercises and all these different items I need to slowly introduce at meal time and try with her. There are a million more sensory exercises and therapies that she needs to be getting daily to help regulate and organize her nervous system, along with many other gross and fine motor exercises that should only really be done on an empty stomach so she doesn't puke up her last meal.

I wouldn't trade The Chubs for any other baby in the world. She is my precious miracle, I love her so much. Sometimes I do, however, wish that I could just be a mom to her, and she could just be my daughter instead of a doctor/patient, teacher/student role 24/7. I wish I could take her to the zoo for a day without worrying about her food intake or missing any of her other "exercises" and throwing her into an overstimulated state. But normalcy has never been in cards since day one. I just wish there were more hours in the day. That's all.


  1. Poor Ellie. I know that dealing with all of the difficulties you have been through have been so difficult on you. That isn't to say taht you would trade her for anything, but everyone hopes for a healthy child. And no one ever says that they hope for a child who is going to struggle with oral aversions and eating deficiencies.

    What I can say is that the Chubs has a very strong and amazing mother. It takes a special kind of person to be able to deal with all of the issues that you have faced with the Chubs since the day she was born - and you have got exactly what it takes.

    Things seem to be going so much better with her, so obviously everything you are doing is helping. Don't worry - before long, you will get that zoo trip you are looking for - with no worries about her eating.

    Big HUGS.

  2. Oh, Ellie. You sumed up how I feel about Olivia's and I relationship so, teacher/student in regards in regards to her delays. I had never really thought of it that way before, but when you posted that, a light bulb went off! Hang in there!!! I am glad you are getting the help you need. I give you all of the credit in the world!

  3. I understand just how you feel. It breaks my heart to know that this time with my little boy is passing without being able to fully enjoy it like we would be able to if he would eat normally. I think that's the hardest part about this whole ordeal.

  4. I totally understand. My son James has many similar issues and I sometimes feel like a prisoner and we can never leave the house or do something fun because he wont eat and then we do I feel like a terrible mom because I let my 14lb 11 month old miss a bottle :-(
    I hope for you and me that they outgrow this soon and we can enjoy just being a regular mom with regular baby issue :-)