Monday, January 23, 2012

TV manipulation

I'm probably the only person who finds this video both fascinating and maddening, but here it is anyway. You can hear us in the background threatening to turn the tv off so she will hold her head up, and she does! If anyone knows how to translate this into full time head holding please tell me:) We already do all the typical PT and OT strengthening and stretching exercises. We have got about 6 weeks until the halo goes on.

P.S. "Caca" is what Maggie calls her nurse Jessica (I know it's a bad word in Spanish but oh well).

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Sunday, January 22, 2012

Twinkie Update

I almost lost it the library the other day when Maggie projectile vomited in the middle of a puppet show and several mothers flashed me a look of disproval. I wanted to scream and say, "I promise she's not sick, she just has the most severe reflux you've ever seen!" But I didn't. I just cleaned up the nasty carpet while Maggie screamed because she was soaked in vomit and Mary Lawrence cried because that meant we had to leave the puppet show. Then I drove home in silence thinking that the Twinkies must be too rich for her sensitive stomach because she's been vomiting several times a day this past week. When we got home I gave them a bath and put them in front of the tv. Then I went in my room, closed the door, and then proceeded to sob loudly on my bed for about five minutes. No more Twinkies for Maggie I guess.

Friday, January 13, 2012

How to make a child fat...

Recently Maggie's dietician chewed me out over the phone because Maggie hadn't gained weight in November and December. (Yes, she berated me and left me in sobbing tears-not kidding).

This person had obviously lumped me into the group of neglectful moms she must see everyday at Children's Hospital. "I am not a bad mom," I wanted to say. "Maggie has had a cold, cough, stomach virus, surgery, new g-button (which got infected) in that time period and any time she's sick it makes her reflux/vomiting return. Plus she started walking and burning more calories." But this person didn't care. Her job is to monitor maggie's weight gain and I obviously failed in her book.

Why is it that American children are getting more and more obese yet my child can't just get a sliver of fat on her body? It's so frustrating that Maggie probably gets more calories a day than most finicky two year olds with the homemade formula I make. And yet she's still so skinny!

Then it hit me: Maggie gets no junk or processed food like most American children. No cookies, crackers, Popsicles, ice cream, fruit snacks- none of that stuff that has zero nutritional value, but plenty of calories. Even the healthiest parents still let their kids have a treat here or there, right?

So perhaps Maggie is too healthy. The good fats like olive oil and avocados are just not doing the job for her. She can't have dairy unfortunately. And we can't just increase the amount of existing formula she receives because she will throw up (we've tried and I'm tired of having green goo all over my clothes, furniture, hair, dog, and so on). So I'm thinking I need to resort to adding some other low volume, high calorie food: The Twinkie. That's 150 calories of pure processed food. If anyone has a good reason for me not trying this, please feel free to email me...hopefully my instincts are right on this, too.

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Friday, January 6, 2012

Mean Mommy

You know what gets me giddy with excitement these days? It's not Louboutin heels, large diamonds, or even a fancy date night. I think I coveted those things in my old life. Not any more.

Today one of Maggie's doctors gave me his email address and I seriously felt like the happiest girl in the world for having such access to one of her doctors. And tonight Justin and I are celebrating our ninth anniversary by going to a movie. I'm looking forward to watching previews and sipping on a super large diet coke. [Note:It's okay if you think I am totally pathetic.]

I didn't intend for this to happen because I certainly like the finer things in life (and Justin if you read this: one day when things are going better for us I would happily accept diamonds of any sort). But I guess you can only go so long having a child with medical problems before your heart stops being wooed by material things. And I've definitely hit that point. And, I have to say, it's really freeing.

* * *

On another note, I have resorted to manipulating my poor child to hold her head straight. I threaten to turn the TV off or refuse to flip a page in a book unless she tries. Unfortunately, Maggie is too smart for me. I paused the Snoopy DVD with the remote control and told her "I wasn't turning it back on until she held her head straight." Without skipping a beat, she looked at me and then stomped over to the DVD player and pressed the play button. How in the world does she know how to do that???

The reason I'm giving my child a horrible complex - that she'll surely have to go to therapy for as an adult - is because Maggie is probably getting a "halo"in a few months. A halo is a metal ring that is screwed into the skull in 6 places and cannot be taken off. It's often used when someone breaks their back or neck during a car accident; it' not normal treatment for torticollis, but this is not normal torticollis. And if the halo doesn't work, they the next step is a spinal fusion. Both awful and both mean in a two year old. And I'm trying to avoid both at all costs by being, well, kind of mean.

It's so incredibly frustrating because she can hold her head up for a few seconds, so we know she physically able to do it. But we can't wait much longer to see if she'll start doing it permanently because her tilted position is causing permanent damage to her spine and that will only get worse with time. So we have to act sooner rather than later.

It's heartbreaking and maddening. I wish she was 7 years old and she would understand that if she doesn't hold her head up she will have screws drilled into her head and have to wear hot furry vest that can never be taken off. She will have to relearn to walk (if she even can - a halo weighs 6 pounds!) and it will be miserable. And bonus: there is no guarantee that it will work. Most likely it won't, but Justin and I feel like we need to try it before we agree to do the most permanent and final option, which is a spinal fusion in which she will probably have to wear another halo for several months. This is a major and painful surgery associated with high risks. With it she will never again be able to turn her head left or right, although it will be straight. She won't get made fun of in middle school for that....

We would truly appreciate prayers for miraculous healing (once again!)in the next few months. That she will hold her head up and we can avoid all these major procedures.

Monday, January 2, 2012

Joyful Joyful Christmas Season!

We had a busy and fun month - we went to Atlanta for a checkup and then to Little Rock for Christmas. We feel so blessed to have such wonderful friends like the Gaddis family in Altanta who took such good care of us, and our precious family who loved being together in Little Rock. How blessed we are...

We saw "Madeleine's Christmas" in Atlanta with Marcia and loved it!

Our future performer!
The girls loved Miss Marcia

We stopped and toured the Vicksburg battefields on our way home - I am such a sucker for historic sites.

But it was worth it because she held her head straight at this monument to Illinois soldiers. (We really think the Botox she had in Atlanta this trip really made a difference)

Big sissy helping with breathing treatment on our trip

I love these girls...

Sweet sisters
Someone was not too sure about's funny because I find such appreciation in these often frustrating, but very much normal, toddler behaviors. I know what a blessing it is that Maggie is even going through these "normal" stages.
Fun with our Phelan cousins!

Making a homemade present for Lolly and Poppa

With friend Michael Lipsey (yes, I have trained the poor child like Pavlov's dogs to pop her head up for a few seconds when the camera comes out.) These two had due dates two weeks apart - I finally feel like Maggie is starting to look her age! She's petite, yes, but within the normal range.

Couldn't resist eating the gingerbread house decor:)
Precious moment at the Candlelight service that my dad snapped with his camera.

Our tradition of reading on Christmas Eve - "The Night Before Christmas" and Luke 2

The little ones adore Uncle Will (aka "Buddy") with Noah

Look at how big I am getting! At Mimi and PopPop's house.

Love from Pop (her great-grandfather).

and cousin Natalie

Uncle Patrick and Emerson (did I mention this was our first ever tacky sweater Chrtimas gathering? Should have mentioned that...we don't normally dress this way, just wanted to shake things up this year)

This was Neely's sweater - wish I had gotten a picutre of her flashing ornament earrings!

Everyone had to give Maggie some special love, including her great-grandmother Nanny
Four generations of the Wooten extended family- Love y'all!

Sunday, January 1, 2012

Thought this devotion was the perfect encouragement for those that may be struggling to adjust their perspectives and step into the New Year with joy and hope...oh that I may focus more on the preciousness of Jesus this year and hold up my banner of confidence in Him each and every day.

"We will be glad and rejoice in thee."
Song of Solomon 1:4

We will be glad and rejoice in thee. We will not open the gates of the year to the dolorous notes of the sackbut, but to the sweet strains of the harp of joy, and the high sounding cymbals of gladness. O come, let us sing unto the Lord: let us make a joyful noise unto the rock of our salvation. We, the called and faithful and chosen, we will drive away our griefs, and set up our banners of confidence in the name of God. Let others lament over their troubles, we who have the sweetening tree to cast into Marah's bitter pool, with joy will magnify the Lord. Eternal Spirit, our effectual Comforter, we who are the temples in which thou dwellest, will never cease from adoring and blessing the name of Jesus. We WILL, we are resolved about it, Jesus must have the crown of our heart's delight; we will not dishonour our Bridegroom by mourning in his presence. We are ordained to be the minstrels of the skies, let us rehearse our everlasting anthem before we sing it in the halls of the New Jerusalem. We will BE GLAD AND REJOICE: two words with one sense, double joy, blessedness upon blessedness. Need there be any limit to our rejoicing in the Lord even now? Do not men of grace find their Lord to be camphire and spikenard, calamus and cinnamon even now, and what better fragrance have they in heaven itself? We will be glad and rejoice IN THEE. That last word is the meat in the dish, the kernel of the nut, the soul of the text. What heavens are laid up in Jesus! What rivers of infinite bliss have their source, aye, and every drop of their fulness in him! Since, O sweet Lord Jesus, thou art the present portion of thy people, favour us this year with such a sense of thy preciousness, that from its first to its last day we may be glad and rejoice in thee. Let January open with joy in the Lord, and December close with gladness in Jesus.
Morning and Evening Devotional, by Charles Spurgeon