Thursday, July 15, 2010

One more thing...

"Oh and one more thing you should do at home is....". That's the phrase I hear all of the time from the therapists and doctors. And it seems every day the list keeps growing.

What made me burst out into tears as I was leaving therapy today is that I'm trying so hard to do all of this stuff (and hopefully not at the expense of my time with Mary Lawrence) and she doesn't seem to be getting better. Her neck is no better and her feeding issues are no better. The only reason she is gaining weight is because I was waking up all through the night to feed her since she wouldn't eat during the day, and now that she has the tube, I use it all of the time because I can't get her to eat while she is awake.

Anyways, here is what I'm supposed to do with Maggie every single day....

For feeding issues:
-feed her seven times a day (eight if I am not using the tube)
-do baby massage or joint compressions before I feed her each time to calm her down
-feed her solids twice a day
-start making all of her baby food with Farmers Market produce (fresher is better for taste buds?) and then start adding heavy cream and butter to the food
-use a very expensive plastic stick with funny textures on it and rub it inside of her mouth and cheeks to get her to tolerate textures more
-give her meds six times a day to help with reflux
-work on getting her to take the pacifier, which means me holding it in her mouth and squeezing her cheeks together

For torticollis (her tilted neck):
-sit her in laundry basket with toys to her right
-stretch her neck to the right several times a day
-stretch her head to her left shoulder several times a day (this doesn't make her mad...)
-tummy time several times a day with toys to right
-make sure the tape on her neck and back stays in place and if not replace it
-put her in high chair or swing and put all toys to the right and try to get her to grab for them

For tight muscles due to no fluid:
-rub her legs a certain way (it is completely different from "infant massage")
-stretch and point her toes
-more tummy time but propped up

For other developmental things:
-make sure she uses her right hand more (because she is always looking to the left she often misses her right and foot and babies are not supposed to have a hand preference until 2 or 3 years old)

And no I can't use the easy go-tos like the Bumbo or Exersaucer because it just encourages more neck tilting, which we are so desperately trying to avoid. She's getting a helmet next month and we don't want her neck tilting to result in her rubbing her shoulder raw with the helmet! So most of this stuff requires my constant assistance and I just can't seem to get it all in. I mean the baby does need to sleep! And I have other things to do besides work with her all day. I feel like I'm in high school complaining about all the teachers giving too much homework. I mean do they know that each one of them is giving me so much "Maggie homework"??? I guess not. And I guess they forget I have another child that needs taking care of.

We have so much therapy that Maggie rarely gets a morning nap and so is always kind of grouchy at therapy. The therapists make comments like, "She looks tired" or "I wish she would take a pacifier so she could self-soothe." Duh - so would I! And the reason she is so tired is because this is the only opening you have and it's smack in the middle of the morning. Oh, and thanks for pushing her so hard at therapy that she finally starts kicking and screaming uncontrollably, at which point you hand her off to me and say cheerfully, "Now work on this stuff at home" and I get to drive home for twenty minutes listetning to a high-pitched scream coming from the back seat.

I'm sorry. I am so thankful for all of our great therapists. They are all really nice and trying so hard to help. I am just so tired of being told by so many different people how to take care of my child - how to feed her, how to hold her, how to let her sleep, how to put her in car seat, how to do everything. It is really the  most frustrating thing, especially when you don't see immediate results. Or even results after several months of intensive therapy.

Just having a bad day and wanted to vent....

1 comment:

  1. Bless your heart. I am thinking of you. Maybe ML can help you out with some of those things (like pick out the toys to put by Maggie) just so she feels like an involved helper. You are such a good mom!

    Elizabeth (Kelley) Hicks