Tuesday, December 4, 2007

Grateful Beyond Measure


It's a MIRACLE!

Sophie is eating. Putting food in her mouth. Chewing. Swallowing. And then putting another bite in her mouth and repeating the process.

Real-deal eating. She's EATING!

For those of you coming along late in the game, saying, "Yes. ...AND?", I understand your confusion. I do. A miracle is Jesus raising Lazarus from the dead. Walking on water. Turning two loaves and three small fish into enough food to feed five thousand. Today a miracle is having the medical technology and know-how to bring someone back to life after they've had a massive heart attack or stroke. Or a person waking up after being in a coma for years.


A miracle is not a three and a half year old eating 3/4 of a banana.

But it is. If you know Sophie and her history, you know I'm not being flippant in my use of the word. You know that her eating is a miracle. It is something unexpected. Something unusual and shocking. Something "extraordinary and manifesting divine intervention". A true miracle, by every definition Webster provides. It is from God. And it is something we have waited for for so long. Something deep-down we believed was possible, but could never quite imagine really happening.

Do you hear me shouting through the keyboard? It is happening!!

Over the past several months, she has slowly been making progress. First, in showing an interest in food - asking to try various things, licking them, putting them in her mouth, and often even chewing. And then, gradually, in acquiring the oral motor skills required to swallow food. Eating has slowly become less of a thought-out process and more of an instinctive act. By that I mean, a child born without a natural thirst or hunger response has learned to do something that is completely unnatural for her.

Since she was a newborn, eating has been something she has hated, something that has caused her discomfort, something we have had to do "to her" to keep her alive. To put it in perspective, for her, eating a banana has been as foreign a concept as eating a stick or any other inedible object would be for us. For her, eating has been a learned behavior. A step-by-step process that has involved learning how to put something in her mouth without gagging, learning how to chew without choking, learning how to maneuver a bolus of food in her mouth to a place where she can swallow it "down her chute" without vomiting -- a learned, practiced response to something the rest of us take for granted.

It has been slow. So very sllllllloooooow to get to this point. It still takes her a while to eat something. She still has a tendency to "pack" food during a meal (a common, and often difficult to correct, practice in children with feeding disorders). She's especially prone to this behavior when we're sitting down to a meal together and she's permitted to have several things in front of her on her plate. Russ or I will look over mid-conversation and her cheeks will be bloated out like a little chipmonk. And she still doesn't drink enough on her own to stay hydrated. Her version of "Sophie, you need to drink something!" is a quick minuscule swig from a straw as she's running to her next activity.

But she is getting there!

Two weeks ago she ate a few bites of cheese and a slice of ham. I, admittedly, didn't really believe it. I kept looking to find the pulverized pieces "redeposited" in an odd place - like behind a couch cushion. Last week she ate half a waffle. I stood there stunned and discreetly watched her from behind a cabinet in the kitchen - scared if she saw me, she'd stop eating. And yesterday she ate a whole piece of buttered toast and some cottage cheese. I sat right there at the table beside her, grinning like a Cheshire Cat. I know the poor child thought her mom was nuts. ...And I am. I mean, at this point, after all this, let's not kid ourselves, I am most definitely nutty as a fruitcake. But a happy Fruitcake, I am.

The transformation and progression, especially over the past couple of weeks, has been amazing to watch. Incredible. And such a blessing. Every time I watch her, I am thankful. For all she has made it through. For her endurance. For her cheerful spirit, and the fact that it has remained intact, despite her hardships. For her sweet smile, her quirky little sense of humor, her love of life. For the fun she has added to our family. For her - our sweet Sophie. Every day I am so grateful to God for bringing her to our family.



She is proof that good things are worth the wait, and that God, in all of His infinite wisdom and power, is able to do immeasurably more than we ask or imagine.

For the first time in three years, I can actually visualize her going to kindergarten with a cheese sandwich and an apple in her lunchbox, instead of a syringe and a bottle of pediasure. For the first time since I started accepting things as they were and stopped trying to predict what the future would bring and how I would tackle it, I can visualize not having to go to her classroom every few hours to act as her g-tube. For the first time since we brought her home from the hospital, I haven't had a barf bucket in every room, ready to grab at a moment's notice. I can actually see a life ahead full of what I have wanted for her. Heath. Normalcy. Happiness. Independence.

It's amazing, and I am so exceeding thankful.

Thank you, Lord, for the way you show yourself in the everyday miracles and blessings you bestow.

******

"Believe all things are possible." (Mark 9:23)

26 comments:

kathy said...

Your post made me cry! I'm so happy for you all! I knew we were headed in this direction - just wasn't sure how long it would take to get it to the point where you could actually declare "she is eating!".

Kristen said...

I am crying too! Of course I know how much you guys have struggles and I KNEW this day would come....you have been an amazing mom, and Sophie has you to thank too! I am so happy and can't wait to tell everyone about Fia's "twin"!

Anonymous said...

Yea! Yea! Yea!
We are rejoicing with you and thanking the Lord for all He has done with Sophie!

sarah, dave & jackson

Kristy said...

Thank you, guys.

Thank you so much for the support and prayers. That's another thing I'm extremely grateful for --

Friends.

Anonymous said...

I can't imagine how you and Russell must feel:) God is so good! And he knew exactly who to give Sophie to.
Rejoicing with you,
Aunt Becky

Kristie said...

Kristy your post definetly made me cry big happy tears for you guys. I know what a struggle this journey has been and how amazing that she is eating now. I agree with God all things are possible, I believe he is the only reason that Preston eats like he does today. It was through all the tears and prayers that we all got through this. Im sending you big hugs from texas!!!

Anonymous said...

You don't know me, but I am a friend of a friend of yours in MI. I read often of your struggles to eat bcuz I have a 9 months old SEVERE refluxer(338x in 18hrs on his ph probe) who was sleep fed until he got wise to that. Is syringe fed now mostly, went to OT for dysphagia and feeding aversions. SO I was Sophie from "afar" with bated breathe to see how she progresses. I just wanted to say thank you for posting and Thank GOd for Sophie eating. I now can start to see the light at the end of the LONG reflux tunnel. I now have hope that my little GERDling with eat normally too!!! Praise the Lord
hug from Michigan

Kristy said...

Anonymous in MI,

Thanks so much for writing. (I'm assuming our mutual friend is Nicole, maybe?)

Your child's history is OH too familiar. All of it - top to bottom. Nine months - eighteen months was our hardest time period with Sophie. That was when she had weaned herself from sleep-feeding, was fighting her syringe-feeds like a mad banshee, and was not responding to OT/feeding therapy at ALL. We thought we were headed for the g-tube for sure.

We have found with Sophie it is best to take it one day at a time. To not try to predict what's around the corner - to just look at what you have to do to get through THAT DAY. God will give you the strength to take on whatever comes next.

With Sophie, we sustain her through her formula (syringe-fed, of course). It provides her nutrition and calories. And we allow her to try "real food" as she shows an interest and asks for it. By making it non-threatening and somewhat optional (the syringe feeds are not optional - those she knows she has to do), we opened the door for her to WANT to try to eat.

As her esophageal tone has improved, so have her problems with dysphagia. And we've found as her confidence has grown regarding swallowing, she has had fewer problems with gagging and vomiting and delayed gastric emptying (everything seems to push through better when there's some "bulk" to what she takes in).

It is a long, hard road. But when they finally reach this point, where they are actually eating some(and enjoying it!), it is such an amazing blessing. The feeling is something that's impossible to describe to someone who hasn't been through it.

Hang in there, and feel free to write anytime. I know, all TOO WELL, your daily struggles. The light IS at the end of the tunnel. It really is.

Melanie and Isaiah said...

Oh Kristy, I'm so extremely happy for you, your hubby and Sophie that I cried! I knew this day would come for you, but I know all too well it seemed like an eternity. Just go glad it is finally here for you. I know people probably think i'm nuts too when I just stare with tears in my eyes and a big ol cool-aide grin as I watch my Isaiah chowing down on food.
Thank you Jesus!

But they DO call me mommy. said...

Thanks for the laughs today!!! (No, to all the rest of you, I'm not talking about THIS post-) I laughed OUT LOUD. Hard. And then I was "grateful beyond measure" that my Husband doesn't blog because I'm the sleeptalker in this family. And getting benched like that? Well that is hilarious! One time Husband says I was even speaking in Portuguese. I don't speak Portuguese. He does. I just know a few words he taught me. Anyway, thanks for that.

Kristy said...

Becky,

You're right. Russ and I are THRILLED to see our little pod EATING. God is good. =)

Kristie,

Thanks for your support and friendship through the years. I'm so glad Preston is doing well too!

Melanie,

So good to hear from you! That's so weird -- My mom is up here visiting right now and I was actually JUST showing her a picture of your cute family. I know, people who haven't gone through this mess just pretty much think we're nuts. But there's no way NOT to get teary when you see these little toots EAT. After all of their struggles, it's amazing to see their progress. To see them ENJOYING food?? I'm telling you, I never thought I'd see the day! Amen to what you said - all the glory goes to God. Thank you, Lord!!

Theydocallmemommy,

I'm glad you liked the Sleeptalking post. My poor husband. He probably wishes I didn't blog (when it comes to subjects like that). ;) Portugese, huh? That's pretty impressive!!

Anonymous said...

Hi Kristy, your simple words, filled with your obvious love and gratitude made me joyful. It also made me thankful for my family. Thanks for sharing. Have a great holiday. Lonnie

Kristy said...

Lonnie,

Thanks so much for the response, and for keeping up with our family and supporting us through the ups and downs with our sweet Sophs. I love that you're such a faithful follower of the blog! I feel like I know you through Russ. Happy holidays to you and family as well.

Anonymous said...

Kristy - I am seriously crying!! I am so happy for you!!!!!!! What a joy to read your blog today. When Sophie and Jackson were about 2 months old I found the reflux board so I have been praying with you and for you for a long time! I have said many times - Sophie is very lucky to have you and Russ. You have loved her, fought for her and not given up in this battle you have been fighting. You are amazing parents. Even though you have felt like you were going to go over the edge so many times, you truly have handled everything with such determination and strength. I know you have certainly been a source of inspiration to me when I've gotten down. You all have come so far and I am truly rejoicing with you!!

Big hugs!!!

Nancy & the boys

Kristy said...

Nancy,

That was about the sweetest message in the whole world. You have been such a great, supportive, always encouraging friend. And I appreciate it so much. Thank you. Give Jackson a big hug from Sophie.

Anonymous said...

Yay! That is truly a miracle.

My daughter was on a g-tube from birth 'til age 3. The day it came out was the greatest day of our lives.

Kristina

Anonymous said...

Kristy, I read your blog from time to time, and just read this post today! I was crying and freaking out (on the inside) right along with you. It gives me such hope for Oliver. He, blessedly, is over the rocket vomit stage, it appears. But it's a trade off, now he just doesn't eat at all, usually. We had a blissful August when he was not vomiting AND eating everything I put in his mouth, but alas, it was just a phase. Now, any day he eats anything is a good day.

Congratulations on all your hard work paying off. I truly know how it feels to see a goal met that you wondered if it ever would be. You are such an amazing mom, and an inspiration to the rest of us.

Amelia

Anonymous said...

WOW!!!! It truly is a miracle!! Your post made me cry! I am so THRILLED for you!!!!!! Way to go, SOPHIE!!

Heather

Kristy said...

Amelia,

Hang in there. If Sophie can reach this point, I'm convinced any of our little GERDlings can! Seriously. We never thought we would see the day when the vomiting would all but stop and EATING would start!! I get teary every single time I see her eating so well...so happily...so easily. It's such an amazing blessing.

Heather,

Good to hear from you. Man, it's been way too long since I've checked in with the group. All of our kiddos are getting so big!

Thanks for writing, guys. And for rejoicing with us in this miracle. Only you guys can TOTALLY understand the joy we're feeling.

Hugs.

Kristie said...

Kristy, do you happen to have a email address for Janice? I wander how little Evan is doing these days.

Anonymous said...

Kristy & Russ,

I am sooo thrilled for you and Sophie! I'm only sorry it took me so long to get around to reading your good news. I will try to let all at Grace Church know as many of us have been praying all these years. Is this a maturity thing or was all the therapy having a great affect? Help me to understand the process. I love you guys and am so very happy for you.

Connie

Kristy said...

Hey Connie,

Great to hear from you!

No, the therapy was a no-go. After a year and a half of working with the OT and feeding therapist, she hadn't made any progress. She would still gag and vomit whenever she tried to eat something. And she was pretty stubborn in her reaction to how they tried to feed her. She would resort back to her old tricks - clenching her jaw closed, pocketing food in her cheeks, crying, gagging. It just wasn't helping, and at times I really felt it was taking us the opposite direction - doing more harm than good.

For the most part (as best I can tell), her progress is due in large part to a maturity thing. She hasn't been refluxing NEAR as much these past several months. I think that, more than anything, has allowed her esophageal tone to improve. When she was vomiting non-stop, everything in her GI tract was just so loose. Now that the refluxing has calmed down, those muscles and sphincters have tightened up quite a bit. She's not uncomfortable and scared to eat, like she always has been.

Since the vomiting has been reduced, her interest in eating has increased. Now she WANTS to eat. Teeny tiny bites (which for FOREVER she just chewed and spit out), now she can swallow. It still takes her a long time to eat something (of any substantial quantity)...

But, praise God, she's EATING!! It's amazing. Thank you for praying so diligently over the years, and please thank everyone at Grace for us as well.

Much love.

Anonymous said...

Kristy,

I wanted to also say how WONDERFUL this is! I can't imagine what you have been through. I do not think I could deal with it at all as well as you have. I enjoy reading your blog. You are so funny and have such a great way of looking at things and finding the good in the bad even!

Not many people can do that..

I bet Sophie is so proud of herself and so happy too. What a christmas present for your whole family!

Amy and the boys

Anonymous said...

Again I am so glad I found this blog. Maybe it will give me some ideas to help my little one.

People would always tell me "Oh she'll eat when she is hungry." They didn't get that my baby like sophie did NOT want to eat. She has finally got to the point that she doesn't scream through the whole bottle. If I would have let her eat when she wanted, she would have never eaten.

Casey

Anonymous said...

hi, i'm happy to have found this blog. I have a 5 year old girl who is 100% g tube fed due to severe esophageal dysmotility, GERD and swallowing issues. She cannot safely eat or drink, her esophageal issues and swallowing issues cause her to (silently) aspirate. We have been praying that one day she will be able to eat but whenever we try to give her little bits of purees she clearly struggles and coughs and sputters. I am desperate to connect with anyone who is going through similar stories to offer some kind of advice and hope. I am so happy your daughter is eating.

Ruth of fat loss for idiots said...

Thanks for your post. Your excitement is pure and note-worthy.

I shared your article with a few friends who are waiting for the same moment. They can't believe that someone is as pumped up as they are :)

Thank God for all the blessings. And may He pour down more for you and your family.

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