Sunday, January 25, 2009

We're tooling along!

So far Peanut is STILL doing awesome at her new feeding regime! I am so excited, she doesn't have to get hooked up until bedtime, and is unhooked in the morning. This has been a goal for SO long, and it has never even seemed possible. Now we are here, and I am sighing a huge sigh of contentment.



I would of course LOVE my Peanut to decide to eat "normally", with her mouth, as most kids do. For some reason she just won't. If you can get a bite in her mouth, she is able to chew and swallow it. She just hates it. Even when she likes the taste of something, she hates having to eat it. No one can explain such severe aversion to me, we have been working on it for years, and it is SO frustrating.



In the end though, we are able to nutrition her up and keep her good and healthy. And now we're doing it with minimal retching and gagging.



Life is good!



Oh, and did I mention that we got approved for the Littlest Heroes photo project?? I have been contacted by a photographer and we are working on setting a date! I am SO excited!!! :)

Sunday, January 18, 2009

So ... who deleted their comment?

I gotta admit, it weirded me out this evening to check my blog and see that someone deleted the comment they made. Anyone wanna fess up and tell me why you deleted your message?

Thursday, January 15, 2009

Knock On Wood

My peanut is doing AMAZING lately! I am knocking on some serious wood right now, but she is just doing great. Her feeding rate has never been able to go over 50 cc's an hour without serious retching and screaming. We have tried every few months to pump her even to 55 cc's and hour, with no luck.

Finally the GI mentioned that perhaps she doesn't like the Beneprotein. So we took it out. No retching! No screaming! No throwing up! Tried adding it back in, BOOM. Back to the yuck. So we stopped, and as I blogged about we went through the challenge of trying to figure out how to get protein in her. We knew then that she still doesn't tolerate dairy (Beneprotein is a whey protein). She didn't tolerate soy protein powder either, it had the same results. I finally found some Brown Rice Protein at Mother's Market. She tolerates it!! It doesn't dissolve enough to go through the feeding pump though, so she gets it in one of her hydration boluses in the daytime. But no retching, screaming, or puking!

I gave it about a month, and then tried bumping up her feeding rate to 55 cc's. She did fine for a week! Up to 60, 65, 70 - still fine! I bumped her to 75 cc's and hour, and she's been there for two weeks now. Sleeping fine, no retching, no screaming, no puking! HOLY COW!!! So knock on wood, it seems that the protein was to blame for the feeding problems and NOT the rate itself!

The only problem now is that we only have 500 cc feed bags for her pump, so we have to remember to wake up at midnight or so and refill the bag.

My goal was always for her to NOT be hooked up to the feeding pump during the day. For her to only be hooked up at bedtime and then run overnight. We are THERE now! She gets hooked up at 7pm when she goes to bed, and is unhooked when she wakes up. WOW WOW WOW!!

We added in some extra hydration boluses during the day, because she can't go more than 3 hours without fluids due to her metabolic disorder. So she gets Pedialyte all day, and then her formula overnight.

I am EXCSTATIC!!! I only hope that this continues. As I said, knocking on some serious wood here!

For any of you dealing with feeding issues, are you using Beneprotein? From researching it more, a lot of kids don't tolerate it. Interesting to know, after she's been miserable on it for two years!

Wednesday, January 7, 2009

I'm leaving my comfort zone Thursday ....

My husband's company has a formal party tonite. The employees have a 9-5 meeting, with a catered lunch. Then they go to a nice restaurant and bar for dinner, where spouses are invited. So I have a new dress (had to buy one, losing 35 pounds and having a breast reduction means nothing in the closet fits anymroe!). I have pantyhose and cute new shoes. I dyed my hair today to cover the gray that was peeking through.

Tomorrow I am going to the MAC counter at Macy's for a makeover. You have to spend at least $50, but someone gave me a $25 Macy's gift card. I would never use it otherwise, so I'll use it tomorrow and only have to spend $25.

I am SO nervous! I am worried that the hip young makeup girl will think I'm a fat, not-so-hot mom. I am going to go to Macy's fully dressed, get made up, and then meet my husband for the party. I HOPE HOPE HOPE they don't make me look crazy!!

Serious, this is so far outside my comfort zone it's insane. I am a PTO kinda mom, a SAHM who sells on eBay. I am not a get dressed up and have a professional do my makeup kinda mom!

Gaahh.. I am nervous!

Saturday, January 3, 2009

Littlest Heroes Project




Have you heard of this? I just filled out the form. I have wanted family photos done for SO long, but no one is able to get my Peanut to smile at the same time as we are. Photo studies are too loud and bright and scary for her. Imagining someone coming to our house, playing with her for a few minutes to befriend her, and taking a family photo ... it melts me! It would be priceless. :) Cross your fingers that we get chosen!

Friday, January 2, 2009

The cutest ever



Seriously, how could anyone be any cuter than THIS!