Monday, February 7, 2011

Tube feedings, sleepovers, snow days, and more

As requested, here is a little explanation of how we do Zoya's tube feedings.

We tube feed her four times a day, after breakfast, lunch, afternoon snack, and dinner. We allow her about 30 minutes to eat what is on her plate (which usually ends up being somewhere between 2 and 5 bites of food), then we give her 6 oz. of Pediasure through her g-tube (or "mickey button"). There is a tube that locks straight into her mickey button, and there is a syringe that attaches to the end of the tube. The Pediasure flows to gravity and the speed is regulated by how low or how high you hold it. It has to flow in over a period of about 20 minutes.

Problem with this plan is we have been so busy running around going to therapy and appointments and school, we have often inadvertantly skipped the after-snack feeding. I cheated a little by increasing the total amount of formula to 8 oz, and giving it only after meals, which brought the calorie intake to exactly the same as prescribed. However, after she threw up a few times after feeds we have gone back down to the 6 oz. 4 times a day.

One of the blessings of the tube is that she no longer has to take her yucky medications by mouth. Granted, I still make her take them by mouth occasionally, so she doesn't lose the skill, but it has been wonderful not to have that battle every day. One medication in particular, Kaletra, is 30% alcohol, and bitter, and HORRIBLE, and I wouldn't wish that on anyone, especially a little 6 year old girl.

Here are her morning medications......Gee, can you see why she might have NO appetite?

Incidentally, she had gotten her weight up to 25 pounds, but lost a pound after being sick one week. Ugh!! But at least we're on an uphill trend I guess.

And that is, in a nutshell, how we feed Zoya.

I was going through adding photos and updating all the kids's baby books last week, and I found this in Ava's book......All the hair she ever had, right here in this Ziplock bag. I panicked one day when I could't remember if I had kept it or thrown it away. I am sooooo glad I kept it. My poor sweet girl does not do well in the cold; she is particularly grumpy each winter. I can't say that I blame her with no hair to keep her head warm. I wish she could understand that a warm hat would help but she will have nothing to do with one!


I sure love kids...I walked into the bathroom the other day and saw this. Here is our pet Guinea Pig, Prince Charming, "watching a movie"...Veggie Tales of course (ha), on the iPad, eating a delicious carrot snack. I'm so glad the kids thought to put an old towel under him! If anyone ever wonders how well we take care of our animals, wonder no more!!

Cousin sleepovers are the best! Hope and Sebastian get along perfectly because Hope is bossy and Sebastain is easy going they have so much in common. Here they are dancing The Nutcracker. hee hee

Liesel and Evi got all made up and dressed up and put on a little concert for us. Evi sang and Liesel played the piano. The girls made me promise I wouldn't put this picture on facebook. Good thing they didn't mention the blog. :) They are sure growing up.

For the past year and a half or two, ever since Ava started scooting around and eventually walking, she has had an obsession with tipping chairs over. Apparently she loves the loud BANG it makes when it hits the concrete floor. As a result, half of our chairs were broken (and my nerves rattled). When we spent time with my uncle in California over Thanksgiving, John learned some woodworking skills. For Christmas I asked for dining room benches. He delivered! I LOVE LOVE LOVE having benches in my dining room. He must be sick of me thanking him every day for these things. They are sturdy, easy to clean, can fit a million people, can easily slide under the table in between meals so I don't trip over them every time I walk through the room. There are no more greasy fingerprints to clean off the backs of the black chairs. And best of all, NO MORE CHAIR TIPPING!! Can you tell I'm a little excited?

To simplify things, we have kept all the clothes belonging to Hope, Joseph, Ava, and Zoya, in the closet in Hope's and Zoya's room. Previously there were two dressers and a hanging bar in the closet. It was so difficult to get to the clothes though, and the clothes were constantly being pulled onto the floor. My sweet husband spent last Saturday building shelves into the closet. Now everything is neatly organized and labeled and at eye level. This system has made my life so much easier. I so appreciate having a husband who anticipates my needs and strives to meet them. He sure knows my love language. Thanks Honey!

I love living in the country but one thing about it, nobody clears your driveway when you get 21" of snow. Thankfully everybody worked together and the neighbor helped us as well, and we were finally able to get out to church yesterday after being snowed in for six days. Wow. School is cancelled again today. It has been interesting being cooped in the house for a week with 9 people, 3 dogs, and a cat with diarrhea! I am looking forward to life back to normal. Hopefully sooner than later.

By the way, do you see what looks like a white snowball down by the pond? That is our fluffy white pony, Jack. Have I ever talked about Jack on here? He is a cutie. We traded him for Mo a while back. I'll need to post a photo I guess.


Leslie said...

Love catching up with you on here. Hopefully, we will be back at CC next week and can visit more. YAY for the G-tube. It was neat to get to see it in action. And I LOVE your benches. They are awesome...I'm so impressed. Enjoy a few more days at home and then life will be full of running around and business again :)

MoonDog said...

miss you guys! love hearing what you are up to. I love the beches! Tell John to send up the plans we could totally use something like that! our kids are gonna fall out the window one of these days walking across the back of the chairs of others to get around the table. think of you often! tell John I did get his note and will send him Eric's email.

Anonymous said...

Love the benches! Glad the mickey button is working. 25lbs!!!


Mary said...

I absolutely LOVE the benches. What a great gift.
Yay for the Gtube and the feedings going well. If you do forget the afternoon snack one, you can always make it up later in the day. Wait 2 or 3 hours (or a little more) after dinner, and while she is asleep, you could sneak one in!
Great pictures. Can't wait to see and hear more about the pony.

carol said...

Love your update. Sounds like everyone is doing good. Now if spring would just come early!!!

Christine said...

Zoya is such an amazing girl! Love reading abot your family!

Stephanie said...

I love your benches too!! I'm looking for a bigger table with benches for our kitchen.. we are outgrowing ours! Thanks for posting the pics of Zoya andthe feeding tube! What's up with the chocolate pediasure? Is it higher calorie than the plain or vanilla? Just wondering, seeing that she doesn't taste it, I just thought it was funny! :)

Charissa said...

Nope, no more calories in the chocolate Pediasure. It just happens to be the flavor that was GIVEN to us by a very generous friend. She gave an entire month's worth!! :)

Anonymous said...

This is an awesome blog...and the photos are priceless. Love the carpentry John did...the benches and shelves. What a 'jack of all trades' he is. Bless her heart, Zoya appears very comfortable with the feeding tube. The snow is beautiful, but I don't miss living in it. Thanks you so much for the update. Miss you guys.
Aunt Sharon