Summer time

Maggie is still wearing her brace most of the day, but we don't want to deprive her of too much summer fun so we will take it off for pool time and special occasions like a friend's recent princess birthday party.

My friends keep commenting that her neck is looking so much better. I hope so, although her therapists think she should have made more progress. I wish so, too. I'm so tired of these neck issues. It's a daily struggle to get this feisty two year old to wear her brace.

She's having more Botox next month and then in August she's enrolled in an intensive feeding program. My prayer is that it helps and not backfires (sometimes it does). Right now Maggie is drinking water and eating (and then mostly spitting out): pretzels, pepperoni, okra, pickles, goldfish, and well that's about it. Any progress on the feeding front is great. But it is all very slow. I'll admit that it's much easier to skip the "sit down and offer her food three times a day" part and just go right to the tube feeding. Sometimes I admit I do. But then I remind myself that this child has to learn how to eat, and it's totally in my responsibility to expose her to all things food. So even though she usually throws, spits, or plays with the food I put out for her-and it all usually ends up in the trash-I have to hope that one day it will pay off.

I do look forward to the day when I can sit both children down and feed them a meal and be done. No more tube feedings - oh how wonderful would that be! Will it ever happen though? That is my prayer!

Happy girl!

We are starting aquatic therapy on Monday. I'm not a glutton for punishment, I promise. It's just that we've found that Maggie lifts her head up way more than usual when she's in the pool. Since we've exhausted all other "strengthening" PT exercises, I figured why not try aquatic therapy where maybe she won't actually know it's therapy?

After a month of being off her injured foot, Maggie started trying to walk again this week. I feel so bad that she has to relearn to walk because of me. But I'm glad her foot is healing and she's going to be okay.

Also Maggie is now over 27 pounds! In the 25% for weight and 50% for height. We are so thankful. Now if we could actually get her to eat something...

Fractured

Well another trip to the ER this weekend- at least this time it was for a normal childhood issue. Maggie fractured her foot and definitely wins the award for the most pitiful looking child. I don't even want to say how it happened, because it's so embarrassing, but I know everyone will wonder:

You know how your children always like to be right next to you, like little ducklings almost following you everywhere? Well I was fiddling around in the closet and didn't hear Maggie sneak up behind me. I stepped back out of the closet on her foot and, being in her brace, she was very unsteady and fell really awkwardly (she was also wearing un-supportive sandals-also dumb on my part). I knew when she fell that it was bad. She screamed like I've never heard before- which told me it was serious because she is so tough to begin with.

I held her crying in that spot for about 30 minutes, praying that it wasn't broken and that I would have enough strength to go through another ER visit.
Luckily, the ER only took about four hours and was not that bad. ML got her standard graham crackers and apple juice with the peel back lid and Maggie sat in my arms and played with the annoying tv remote attached to the bed. It was pretty routine. I guess there's something about having a medical issue that can be diagnosed and solved almost immediately that is so much less stressful!!

Don't get me wrong- I beat myself up about it ( and Justin gave me a hard time, of course). But thankfully it's just a tiny fracture and she's going to be okay...

Easter!

In the name of cute photos, I gave Maggie a break from her brace for Easter activities...

Mercy - Part 3

So for my birthday last month all I asked Justin for was to let me stay in bed a few hours so I could watch t.v. and drink my coffee by myself. Pitiful, yes, but that's really all I wanted.

We made it to about 8 am before Maggie started banging violently on the door with the force of her brace, " Mommy, mommy, I want mommy!".

So I opened the door and pulled her into bed with me. We started watching the movie "Soul Surfer" about a young shark attack victim. I thought Maggie might last 5-10 minutes. But believe you me this child watched the entire movie without moving. Which is crazy because she won't watch Elmo or Dora for more than five minutes.

She loved it so much that throughout the next horrific month we let her watch it whenever she wanted, which was pretty much everyday ( we did fast forward the graphic shark bite scene I promise!). It was a lot of tv, but we were thankful to have any distraction from her pain.

The movie is pretty good for a Christian film - the gorgeous Hawaiaan landscapes and surf scenes draw you in as the story unfolds about a family that is raising their kids on the beach, homeschooling their competitor daughter so she can surf six hours a day. The loving, happy family surfs together, laughing and having fun to a movie soundtrack of songs that include "This is the life." It truly was.

But the viewer knows that this beautiful and godly family, seemingly with everything going for them, was about to face a trial like they'd never known before. The opening scene we see them at an idyllic beachside church service singing "Blessed be the Name of the Lord." The lyrics are foretelling to the story: "He gives and takes away, he gives and takes away, my heart is here to say, blessed be your glorious name..."

* * * *

So after that horrible week I wrote about yesterday, I told Justin I was done. Finished with this madness that encircles my life: doctors who don't call you back, nurses who don't care, people who are heartless. Something inside me had changed that day, I told him. I'm not sure what exactly. I think watching your child suffer day in and day out eventually does irreversible damage to a mother. And I felt damaged to the core.

So as our lives seem to be crumbling around us, all I can think is "Lord, what else?"

I get chills up my spine thinking of Job and how he lost everything, including his children.

I resolve not to leave the house. Reduce risk of getting in an accident that could harm my children or at least leave our insurance-less family with a massive hospital bill.

Oh me of little faith! Obviously this was not realistic! How silly it all sounds now, but it's true, for a few days there I really tried to live outside the realms of God's sovereignty.

* * * *

As I got weaker, Justin got stronger. Funny how that happens in a marriage. He starts asking to pray with me more, begins reading Scripture aloud to me. I - who have always wanted my husband to lead me spiritually - withdraw emotionally.

And it's not that I was turning on God, because I'm praying silently all the time. But more that I wanted my husband to know the depth of my anger and sadness.

Maybe I felt like if he knew the true despair I felt, he could put on his super hero cape and fix everything pronto. Partly, I admit, I wanted him to feel guilty, like somehow any of this was his fault, which it wasn't, but I suppose I just wanted someone to blame. I told him I just wanted to go home to my family to escape this suffering in Dallas. Dagger to a husband's heart. Sin played out in a marriage.

* * * *

After our first insurance appeal was denied, we stayed up late one night, Justin trying to comfort his hysterical wife who was convinced ( and rightly so) that life as we know it was over. Having a child with major medical problems can suck every last penny out of any family, and that's when they do have insurance.

I cry hysterically. He says he's never seen me so upset before. We talk more and more about the various paths our life could take and what that means for Maggie's health, for our family, our house, our children's schooling.

Then we both remember the day when I was 15 weeks pregnant and we refused to terminate our pregnancy, saying that no cost- financial, physical, or emotional- was too high for the life of our child.

We were brought to our knees once again, realizing that three years ago we told God we would give anything, everything for Maggie. Our lifestyle, our finances, we didn't care what it cost, just wanted that baby on the ultrasound screen.

Out of his infinite mercy He gave us that miracle, and yet here I was, three years later, already bitter with little faith in the One who gave us the impossible and provided for our every single need since.

I fell asleep crying that night, humbled once again.

* * * *

You know, even though I've learned my whole life that God's power is made perfect in our weakness, that faith as small as a mustard seed is all we need, that His Spirit intercedes and prays for us when we are too weak and don't know what to pray, somehow I still have in mind that I have to be really strong in my faith before God's going to really go to work and answer my prayers. It's just not true though.

It was actually at this weakest point that I saw God at work (hello, I sing "Jesus Loves Me" every night at bed time, you think I would get that when I am weak, He is strong!).

Incredibly the very next day blessings abounded. It was so out of left field, too, that there was no question it was from the Lord. First, we got a call that they accepted our second appeal (which rarely happens they say). Our insurance would be reinstated immediately. Praise God. Second, blessings abounded on Justin's business, confirmation that we were on the right path. Third, we saw a new GI doctor who gave us hope for Maggie's stomach issues and eating.

This kind new doctor prescribed a previously used medicine at a higher dose to induce hunger, and a few nights later she actually took a few bites of a chicken nugget. Her terrible dehydration also kicked in some survival instincts because she actually started drinking water! She hasn't consumed anything liquid by mouth since she was 8 months old. Granted it was a little messy, her mouth is so weak it runs out the corners of her lips all over her shirt, but who cares? Furthermore, she learned how to use a straw! Sounds so mundane, but it's huge to us.

Justin and I have both been in awe of His mercy, when the world let us down, we realized that He was still holding us up
* * * *

It didn't hit me until a few days ago that maybe we started off the month watching Soul Surfer for a reason. I know its crazy to think a two year old can identify with someone else who is struggling, but I swear she was drawn to the movie like nothing I've ever seen before . And it was so good for Mary Lawrence and I to talk about the movie, about Bethany Hamilton's disability and how she looks different than other people, but she's still the same. How she struggles like Maggie, but how God gives her the strength to keep surfing and living a happy life in spite of it all.

Everyday as the movie played in our den I heard the hymn, "Blessed be your Name," yet it didn't click until much later that the hymn was based on Job 1:21:

And he said, "Naked I came from my mother's womb, and naked shall I return. The Lord gave and the Lord has taken away; blessed be the name of the Lord."

Our March was capped off by a funeral and burial, which really brought this verse home to me. My dad and his brothers had to start going through all their mother's things and cleaning out her house of over 60 years. It was such a reminder of how we come into this world with nothing and leave with absolutely nothing. All these things that matter so much to us really don't matter at all.

And it might not be at the end of our life that our beloved possessions are taken away - even the most financially secure families can lose everything. Because everything on this earth really belongs to God and He has the power to give and take away. Do I really grasp that now?

I ask myself : was I saying "Blessed be your name" throughout this past month of struggles? Would I say it still if, like Job, I lost my house, my insurance, my possessions, my children? Like David in the wilderness as his enemies seek his destruction, would I sing, "Because your steadfast love is better than life, my lips will praise you"? (Psalm 63:3)

My mom and I were discussing all this and she reminded me of a moment at a friend's funeral when the grandfather, who had lost his granddaughter and son in the previous months, stood up at the front of the church and said loudly with the outmost conviction: "The Lord gives and takes away; Blessed be the name of the Lord." That's all he said and then he sat down.

Do I have that much conviction as I say those words? Will I next month or next year or in 10 years when faced with tribulation? I hope and pray I do.

Mercy - Part 2

One Thursday morning about a month ago I got Maggie out of her bed and put her on the changing table as usual. I wasn't wearing my glasses so I didn't realize her button wasn't tucked properly into the makeshift hole cut into her footed pajamas. So when I unzipped her pajamas and opened them up to change her diaper, the button got caught and popped out with the violent force of a champagne cork. Blood and stomach contents went up like a geyser. And I started screaming right alongside Maggie, who was in terrible pain and shock at what her idiot mother had done.

There is a short window to get a button back in before the body starts trying to close itself up. Justin had a meeting so the rest of us hopped in the car and raced to the ER.

As always it takes a while to get back, but when we do the doctor brings us a brand new standard g-button to replace her old one. "No, sorry," I tell him as I looked the box over, "she can't have that kind as it causes severe pain and it always gets infected."

"Sorry," he says, "that's all the hospital carries. The kind your daughter has is a special order."

That's when I tell him what I'd already told two nurses (who obviously ignored me) that the Childrens GI clinic nurse who does the g-buttons gave me specific instructions that if Maggie's button ever came out, and she wasn't there, that she would have an extra one in her file drawer with Maggie's name on it.

So the doctor and nurse agreed to call the Clinic ( I should have just walked over there, but at the time I thought they could handle it).

An hour goes by...we ask again....another hour....the nurse says they can't get anyone to help them. Jessica and I take matters into our own hands...we call and talk to her doctor's nurse and plead with her to go look in this drawer - that my daughter will be in severe pain if they put the wrong button in and will surely get an infection. But the uncaring nurse doesn't help, saying that the "g-button" nurse is on leave and so they cant get into her stuff. "I know she's gone," I said, "but that's why she put this plan in place in case something like this happened." Needless to say, she didn't help.

No mercy.

So after five hours at the ER, the doctor puts in the button that we know will cause her to suffer. It's the worst feeling ever, and I can only blame myself for ripping it out in the first place. For not paying the $800 to have an extra button to keep at at home (since insurance wouldn't pay for an extra). For not making sure this so- called back up plan would hold.

Defeated, we leave the hospital.

I notice that we still have time to make Maggie's appointment for her monthly RSV shot. Anyone with sense would have gone home after the morning we had, but I had worked myself into a panic that Maggie was going to get some awful virus. The reason: the first thing she did in the hospital waiting room earlier that morning was put her lips on a juice box that had been left by what I assumed was a very sick child in the ER the night before. Ugh. We need the RSV shot, I tell myself.

So off to the pediatrician we went and on the way across town Maggie pipes up and says she wants a French fry. First of all, this child had not eaten since the day before so she was probably starving. Second, when your child who doesn't eat asks for ANY type of food, you are tempted to drive 100 mph to get it before she changes her mind. So that's what I do.

We get to the Baylor hospital campus where her pediatrician is located - I drop Jessica and Maggie at the door and go park at McDonalds across the street to get the french fries. I pay and run back across the street to get them at the doctor. The RSV shot takes just a second so we head down after about 10 minutes.

We walk the 15 steps to McDonalds parking lot and find that my car is gone. Ten minutes and it's been towed.

I am livid. I go into the restaurant and demand to speak to the manager. I tell him that I just bought food here and walked across the street to get my daughter at the doctor and my car had been towed in less than 10 minutes.

No mercy.

He tells me he has nothing to do with it; that it's Baylor who does the towing ( I find out later this was a lie; it was McDonald's).

Look, I plead to him, I've been at the ER all morning with my child. She hasn't eaten in 20 hours. She is in pain. I was a customer here, please can you help me???

Again, no mercy.

I walk our of the restaurant, now sobbing hysterically. Maggie is walking barefoot and in a diaper on the sidewalk. (Her diaper had leaked all over her clothes at the hospital and in our rush to leave that morning we didn't grab an extra set of clothes, nor shoes.) Jessica, seven months pregnant and exhausted, is holding her hand, trying to shield her from her mother's ensuing breakdown.

I call the towing company. Please, I beg, bring back my car. My daughter has been at the hospital all day - she is in pain; she has no clothes on. We were customers of the restaurant. Please.

Sorry, you are going to have to come pay to get your car at the lot.

I have no way to get there, I say. My husband is an hour away.

Sorry you'll have to take a cab.

But my car seat is in the car you just towed! How am I supposed to get there?

Sorry, I can't help you, the harsh voice says.

Please, I beg you, have your driver bring the car back to McDonalds. I'll pay whatever- I just need it now. I'm begging you.

The only way you'll get your car is if you come pay $186 at the lot. Click.

Again, no mercy.

So I sit on the curb in the clothes I slept in the night before, sobbing aloud. People began stopping to see if they could help. It was that bad.

* * * *

Thus began my own little personal March madness. Bitterness set in. And it seeped in me all week as Maggie's pain intensified. The skin around her button had gotten so raw that we had to hold her down while we fed her - she writhed in pain, her little body struggling unsuccessfully to break free of the torture. It got so infected that six days later she got a 103 fever and had to be on antibiotics. Her constant crying invoked constant vomiting, which caused dehydration and cracked lips. She was hours away from being hospitalized.

At the height of the infection we called the office to check on the status of the special order button- we knew she would not get better until she had it, even though it was going to be horribly painful to change it out.

Jessica talked to a different nurse this time. So she just casually asked her if she could go check this elusive "file drawer" for that extra button. She was on hold two minutes, then the nice nurse came back on to say, yep, she found it. The box had Maggie's name on it and everything.

There are not words to describe the outright anger I felt when I heard this. My child had suffered needlessly for a week. And when I say suffer, I mean truly in horrible pain. Pain that was agitated every time we accessed her button when feeding her or giving her meds, which is ALL day long. We watched her vomit everything we fed her. She lost 1.5 pounds that we had worked so hard for!

And all because no one at the ER or GI Clinic would take two minutes to help us.

Again, no mercy.

* * * *

A few days later we got a letter in the mail stating that we no longer had health insurance. Out of blue, no warning, just like that. I'm not kidding. It was like a sick joke.

Turns out the third party check processing company, who cuts checks when you pay bills online, didn't send our payment on time. It was a fluke thing that rarely happens. As any insurance company would be happy to get our family off their rolls, they cut us out just like that. We pleaded with anyone who would listen, but no one could help us. I get it, it's business, these people that work there are just doing their jobs. They don't care about our sob story.

No mercy.

We would have to go through a three step appeal process that could take a month, during which we would have no coverage. Most likely they would deny it, we were told, so then we'd have to find new health insurance, which could take months to go into effect and would pretty much end Justin's efforts to start his own business (which he did last year). He'd have to get a job at a company in a hurry because we need insurance (and group health plans can't exclude you for pre-existing conditions like individual plans can).

Anyway, the stress level in our house was reaching a new high, and I was reaching a new low:)

Mercy - Part 1

How did I find myself sobbing on a curb in downtown Dallas with no car, no money and Maggie walking barefoot on the littered sidewalk, naked except for a diaper? Yes, this really did happen and I'll get to it a bit later.

This incident pretty much sums up the past month- think miry pit in Psalm 40. I really haven't been able to write - partly because I'm scared what I do will come across as bitterness (and maybe it is) and partly because I know people tire of reading of our struggles (I know I am!).

But God's faithfulness has prevailed so I must write...

This past month :
-We've been in a terrible wreck
-We temporarily lost our health insurance
-Maggie has been to the ER
-She got a terrible infection around her button and was in so much pain that she wouldn't let her own mother come near her without screaming and kicking in fear
-We watched my dad mourn the death of his mother as we buried her last week
-We've watched Maggie battle open sores and bruises from the halo that she now burdens 24 hours a day
-We are still waiting to hear everyday about her MRI results (it's maddening)
-We've suffered deeply in other ways I cannot specify.

Let's put it this way, you know it's bad when you catch your husband dusting Chuck Swindoll's book "Job" off the bookshelf:)

What I have learned this past month is that this world - and sadly most people in it - has no mercy. But God's mercy is infinite. So why do I keep relying on the world to heal my problems (doctors, insurers, books)) and not Him who sits on Heaven's Mercy Seat?

I'll have to continue this story later as I hear little patters of feet running across the house- breakfast needs to be made.

"For troubles without number surround me; my sins have overtaken me, and cannot see. They are more than the hairs of my head, and my heart fails within me. Be pleased to save me, LORD; come quickly, LORD, to help me."

Psalm 40:12-14

MRI

MRI went fine. We won't know anything for a few weeks while he puts the images together and confers with other Drs. Thank you for praying.

She is such a trooper, by the grace of God.




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Crash

These are the words I heard in a span of about 20 minutes as we left Children's hospital to go pick Mary Lawrence up from school:

"She has instability in her neck"..."probably going to need spinal fusion..."..."Lee, it's almost noon don't we need to get Mary Lawrence?" ..."Let's just put Maggie's brace on when we get home"..."We need to tighten the car seat straps when we stop next- they're too loose without the brace"..."That man isn't even looking; he's on his cell phone! Oh noooo!!!" ....Smash, crumple, spin in slow motion.... "Ma'am are y'all ok??? We called an ambulance. Stay where you are..." Child screaming, siren blaring, body shaking...

Car accidents can jolt you out of your security on the road in less than one second. This was no different. If Maggie had been on the passenger side or had ML been in the car in her normal seat, things could have been a lot worse.

Maggie is okay, but the neurosurgeon was clearly unhappy that I didn't have her brace on. (The "we had taken it off for another doctor and were running late" excuse was not good enough for me either.) Thankfully her MRI is on Wednesday so we'll know for sure. But having just heard about this new instability in her neck five minutes prior, I was very upset. Now I'm just sick to my stomach thinking about what further harm the crash may have caused. That's on top of the constant headache I've had since. (Jessica was okay, too, after an afternoon at the hospital, poor thing!).

We moms think we are okay in our big, safe SUVs and that nothing can harm us when we're going 35 mph on a city street. But that's a myth. Always make sure your children are securely strapped into their seats, even if you're only going a mile down the road. Know that even though you are a good driver, the person two cars away from you may be texting, talking on their phone, drunk, or just plain not paying attention...

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Pinless halo

Short story- the two main doctors treating Maggie in Dallas differ on how to treat her. One says we need to correct her immediately either by halo or spinal fusion (the Atlanta doctors concur); the other says we need to wait a few years and really see if we can determine what the underlying issue is before we do anything drastic. Both have valid points.

Anyways, the doctor who wants to hold off on the major stuff suggested a pinless halo brace. I agreed to try it but told him that I doubt it would work because so far Maggie has been able to either remove or maneuver all braces so they are rendered ineffective. But anything is worth a try.

So we went to Scottish Rite on Thursday and I was elated to see that this pinless halo is an AWESOME brace. She cannot get out of it or manipulate it to her liking- and it makes her straight! (Why they didn't give us this a year ago, I'll never know, but I know we can't look back).

Maggie hates it, of course. She can't walk because it's heavy and awkward. But she'll learn. We are working our way to wearing it 24/7 except for baths and stretching.

I'm not sure what the other dr will think. I'm dreading to think he will still want the real halo because we can't take it off at all and he thinks she needs that unrestricted straight growth for 4-6 months. I'm praying that this pinless halo will quickly retrain her to be straight. So Justin and I need to be super committed to making her wear it as much as possible. Which, I might add, is very hard to do.

The past few days I've been totally catering to every whim of Maggie's because I feel so bad for her with her pouty lips and sad eyes. This afternoon she said she wanted to go "bye bye in car." We didn't really have anywhere to go but I put her in the car anyways and we went to the Redbox kiosk at the grocery store. I snapped this photo as she was waving to everyone and saying "hi" to the shoppers. I mean, seriously, what a great sport this child is...




(How hilarious is that curly hair popping out of the top? She looks like a little science experiment.)

People couldn't help but smile. Then one lady asked me if she had fallen on her head. Translation: "You must be an idiot mother for your child to end up like this." And then I just had to leave...

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Good news!

Maggie gained 1 pound in the last 10 days! That is huge for us so thank you for the prayers. It wouldn't have happened without my sweet husband whom I talked into doing a 5th (very late night) feeding to get in some extra calories. That coupled with a healthy Maggie=weight gain!

In other news, in my desperation to build up muscle strength and induce peer pressure to help her neck, I signed Maggie up for Little Gym and swimming lessons in addition to the 5 therapy sessions we get each week. This goes against everything I believe as a parent (i.e. don't overdo it with too many activities) but that just all goes out the window when all those things are truly good for her. Or at least they are right now. Swimming has been so wonderful for her upper body strength. Little Gym is a whole new world if socialization and adventure for Maggie; she is a little hesitant but willing to try anything. I'm sure the other parents wonder why I'm bringing a child with a neck brace to a gym class, but oh well!





Other good news is Maggie is talking in full sentences. She had a feeding evaluation today and the therapist couldn't believe that she was only two and talking so well. This was refreshing because usually these evaluations are so discouraging because she's so delayed in other areas. One of the sentences she's said recently:

"Mommy, (when looking at a picture of a volcano) what happened to the volcano? It's hot- don't touch; ka boom!, it exploded mommy."

How thankful we are for our talkative geologist!



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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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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.

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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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.

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 Santa...it'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!

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

Merry Christmas!

I had decided back in November to give myself a break this year and forego Christmas cards. But when the cute Christmas cards started pouring in ML kept asking me where our card was. So being the guilt-ridden mom that I am, I dressed up the girls for photos in the park yesterday.

This photo pretty much sums up the result of my good intentions:





ML broke into tears after I got mad at her for making silly faces and Maggie is crying cause she got angry and threw herself off the bench onto the stone walkway. So no Christmas card from the Cordons this year. Merry Christmas to all our friends near and far!

November 29th

I wish that I could write that we've seen a dramatic difference in Maggie's neck these past few weeks. Part of the reason I haven't posted is that I have been quite discouraged about it. The first week after surgery we saw signs of improvement and had so much hope. Now, four weeks later, it seems like when the brace is off her head looks just like it did before surgery. Even with the brace, it's not perfectly straight. The muscle release was not supposed to be an immediate cure, but I was hoping to see a bit more improvement than this.

Don't get me wrong. I have no doubt that she needed the surgery - but it just confirms my worst fear that there is, in fact, something more going on than just the muscle. We are going back to Atlanta in a few weeks to see the plastic surgeon and the neurosurgeon and hope to get some more direction on our next steps. Frankly, I am so tired of wondering, questioning, thinking, pondering, doubting, and all the emotions that go with it. Every night I get up between 3 and 4 am (not on purpose!) and just browse the Internet andthinking about every scenario, every decision, every "what if". It's just nearly impossible not to be consumed with it because of the lifelong issues and impairments that can go with not getting her neck fixed. Unfortunately, it's much more than just a cosmetic thing.

I cry out to God every night to heal her and to make her head straight. I don't know why He hasn't nor why none of the doctors so far have been able to help her. I am so exhausted with it all and honestly just want to give up, mostly because I am tired of torturing the her. Plus, I find myself getting frustrated with this poor child who obviously cannot help it. I find myself not ordering school pictures of her and not even taking pictures of her. It's not that I don't love her and think she's adorable - she absolutely is - it's just that it makes me realize how much time has passed and how little I have been able to help her. There is something about a still photograph that makes her tilt seem so much more permanent in time.

On a more positive note, she is walking more and so excited about it. I'll have to post a video soon...