Tuesday, June 30, 2015

Tube Wean, Day 8

Today was our last full day with Heidi; she leaves tomorrow morning after breakfast. I'm sad to have her leave, but I know we'll be ok without her. I've put together a big list of puree-type foods that we can try, so that she doesn't get bored with the same old things until she gets better at chewing and swallowing solids.

For example, I found this recipe for "French-style soft scrambled eggs", which is eggs with milk and butter made in a sauce pan, stirred constantly so that there are very few chunks. I tried it this morning and it was a success! for once in my Pinterest life, ha ha! It was like I had blended up some scrambled eggs. They were very smooth and creamy. And Elsie ate some! She wasn't too sure about it at first, but willingly tried some, and then when we added some ketchup, she ate even more.

Then at lunch, we mashed up 1/4 of an avocado with some hummus, and we spread it on crackers with cheese. She ate several tablespoons of the spread, and then ate another tablespoon or so of just avocado. And I have discovered that blending up a cup of applesauce with a few peaches made the ordinary applesauce much more interesting to taste. So we are branching out from our original "safe" foods of peanut butter, cream cheese, and ice cream.

Speaking of peanut butter and cream cheese, we weighed Elsie again today. When we weighed her on Sunday, she was down about 5-6% of her weight, which is understandable. But we didn't want her to drop below 10% of her pre-wean weight. When we weighed her today, she was only down 6 ounces from her pre-wean weight. 6 ounces! Do you understand what this means? It means that while she did lose weight initially, she is gaining it back. Elsie is GAINING weight, strictly by what she is swallowing! As Elsie has increased her calories and volume orally, we cut back on the amount she gets via tube. The last time we gave her anything by tube was Sunday night. So since Sunday, she has gained weight by eating with her own mouth. Honestly, both Heidi and I were so surprised. We weighed her 4 or 5 times to make sure we measured her correctly, but it was the same each time. Elsie has GAINED weight. By eating. No tube. It's unbelievable.

Of course, her weight will fluctuate, as everyone's does, but as her eating skills continue to improve, as they already have in such a short time, she will be able to eat more and more, and will gain more and more weight. And soon, we'll be able to consider permanently removing the gtube from her stomach. This is not a decision that we would make lightly. Our feeding team plus pediatrician plus myself and Clayton would have to all agree together that she was ready to have it taken out. Once it's out, there's no going back, so we'd have to be 100% certain that she is ready. So she doesn't need tube feedings at the moment, but we'll keep the tube in for the time being to be sure she doesn't need it.

I am so stinkin' thrilled that I am even talking about taking out her tube! I can't believe this whole wean is actually happening. Hooray for Elsie!

Monday, June 29, 2015

Tube Wean, Day 7

Wow, I really can't believe that it is Day 7 of our tube wean.

Today went well, Elsie is showing slow but steady progress. Some of the foods she successfully swallowed today were Cream of Wheat cereal, yogurt, ice cream, Nutella, cream cheese and crackers, and Cheeto Puffs. Don't worry, I'm not just feeding her junk food, but we are limited as to what she is able to swallow right now. But every day, she swallows something new, so her abilities are improving, and as they improve, she will be able to swallow more and more foods and different textures.

Heidi is leaving us on Wednesday, so in preparation for her departure, she took the afternoon off and didn't come over for dinner. We were a normal family of four for dinner tonight. Ha ha ... normal. I made sure that Elsie had solid foods to practice chewing, as well as a soft and/or liquidy food for her to successfully swallow. And she did great. I'll be talking to Heidi daily on the phone after she leaves, so we won't be totally on our own, but it's still a tiny bit nerve-wracking to think of her leaving us. But we'll be fine. Heidi always reminds me of how far Elsie has come, even in just the 7 days since Heidi arrived here. Before the wean, Elsie could only take one small sip of liquid at a time. She always seemed to flinch away a bit when the liquid from a cup hit her mouth, almost as if she were scared or worried about what was going to happen if she tried to swallow it. Now, she drank almost an ounce of milk with dinner tonight in one continuous motion. She carried around a sippy cup yesterday while we played outside, and I had to refill it three times. That's never happened!  Each day her swallowing improves, along with her confidence,
and each day she will get better and better.

Oooh, and Elsie pooped on her own today, without the help of a suppository! Yay for poop!

"Ooooh that ice cream is cold! But tasty! See how clean my
shirt is --- I didn't spit out any of this yummy ice cream!"


Sunday, June 28, 2015

Tube Wean, Day 5 & 6

Sorry I missed a day yesterday; I was tired and lazy and yada yada yada!

Let's see, what happened yesterday ... we had pancakes for breakfast, and she tried a few bites and then kept dipping her fingers in the syrup and jam. Sugar is good for you, right?

Uh .... I think we probably had some snacks and then lunch was grilled cheese sandwiches with tomato soup. She is doing pretty good with the soups and yogurts, peanut butter, cream cheese, honey, and nutella, among other things. I know those things aren't exactly the most healthy, but have no fear, we'll expand her tastes from there. It's really a matter of texture and ... melt-ability.

So yeah then we had Chinese food for dinner, because I needed a break, and Elsie went crazy. She was pretty hungry by dinner time, and went nuts with all of that food right in front of her. Lots and lots of tasting and chewing and she was so excited. Elsie loves food!

She's still working on swallowing solid foods. She's not all of a sudden eating and swallowing everything perfectly. But she's so excited to try and is working so hard.

Today went much the same. Lots of chewing and tasting, and doing well with liquid and meltable foods. And we brought snacks for Elsie to church for the first time ever! She ate and swallowed a bunch of Veggie Straws, broken into small enough pieces for her to easily handle them. We also brought a sippy cup with milk and a Gogurt. Elsie ate snacks in church, how cool is that?!

I had a bit of a breakdown this morning. It was a combination of not sleeping well and the stress of everything else. I let Clayton take care of the girls (plus he did the dishes and wiped off the table and counters, and swept the floor, because he's awesome) while I went back to my bed and cried a little. Honestly, this situation has been pretty stressful. Heidi explained to me that most kids get 5 or 6 months to learn the chewing and swallowing skills that we are expecting Elsie to learn in 10 days. It's a lot of pressure for both of us. I have so many doubts and worries, and this morning I let them take control of me. So I had my meltdown, cried to Heidi, and she "therapized" me, as I like to call it. She's fantastic at helping me see the big picture; how far Elsie has come, and how well she is doing, even compared to average children in their program. Something that she later texted me really stuck with me. This is what she said: "God made Elsie's miraculous little body. He provided (the funds) for the wean in an amazing way. He knows her and believes in her." Just what I needed to hear. Then we went to church. My emotions were still fairly close to the surface and a few things really struck me. One particular scripture quote really hit home:

"Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid."

At that point, I realized that I haven't been putting enough faith in God. What Heidi said was right. Heavenly Father knows and loves Elsie. He has brought her so incredibly far. He provided for us to pay for this therapy, through the generous donations of our loved ones. He's not going to bring us this far only to have things not work out. And then I remembered this post that I wrote just over a year ago. That song still touches my heart each time I hear it. "He will feed those who trust Him." I stopped what I was doing and asked myself if I really believed that was true. Do I believe that He will help Elsie eat? I do, without a doubt. 

So I ask for your continued faith and prayers, and I will be redoubling my own faith and prayers, and I know that with His help (and Heidi's!), Elsie will be successful. She has already made such huge progress and is doing fantastically well. I just need to look at the big picture and not be so impatient. I'm going to find His peace, and not be afraid anymore. He will feed those who trust Him.

Friday, June 26, 2015

Tube Wean, Day 4

Today was long but great overall.

Because Elsie's diet has been drastically changed, she has had a bit of constipation (sorry, I talk about poop and vomit on this blog!), so we have been giving her prune juice for the last few days, but to no avail. We resorted to giving her a suppository today and finally this evening, we had a big poop. Hallelujah! We didn't want her to get too backed up because then she wouldn't be wanting to eat. So thank heavens for poop.

Today we worked on taking small bites. If the bites are small, then there is a higher chance of successful swallowing. If the bite is big, it's almost guaranteed that she'll spit it out. So during snack time this morning, we were playing outside and kept offering her small pieces of Veggie Straws, which are awesome because they taste good but they're very dissolvable and easy to swallow. She successfully chewed and swallowed at least 30 pieces of Veggie Straws. We did the same thing with graham crackers and Ritz crackers, and shredded cheese.

For meal time, we followed the same game plan as yesterday: practice chewing and swallowing solids, then follow up with a liquidy food to help her feel full and successful. I tell you what, this kid is getting pretty proud of herself! I love to watch her enjoying food. We had tomato basil soup with cream cheese mixed in for lunch, and it was a pretty big hit.

The best part of our day was going to a concert in the park after dinner. We bought a few chocolate chip cookies from my lovely friend Staci and snow cones to eat while we listened to the concert and played in the park. Get this: Elsie LOVED the cookies! She ATE nearly half of one cookie and the spit out was miniscule. She dug through our diaper bag and found the little container of yogurt that we brought with us, and ate all of that. She slurped up a bunch of the snow cone through a straw, and then accidentally dumped the rest in her lap, haha. She drank a few ounces of milk from her cup that she had insisted on bringing with us.Then she asked for another cookie! We bought another cookie and she was upset when I gave her just a small piece. I relented and gave her a big chunk, and she ate that whole piece, almost no spit outs! Elsie's turning into an eating machine! And I love it.


Thursday, June 25, 2015

Tube Wean, Day 3

I don't want to bore you with too many details of what Elsie did and didn't eat today. It was a good day, very similar to yesterday. Elsie is still working on solids, but is doing very well with liquid and liquid foods. Heidi and I are helping her on each meal to practice chewing and swallowing solids first, and then giving her a liquidy food she can easily swallow to help her feel successful and full.

Heidi has estimated that Elsie took in about half of her normal calories today by mouth, which, considering that 3 days ago she took in zero of her normal calories orally, is pretty awesome. She went crazy today with some cream cheese on crackers, had soup with her lunch, drank a lot of juice and water, and had more ice cream before bed, just to name a few.

Things are going very well, and Heidi is very happy with her progress. She keeps telling me to be patient, which is hard, but she has absolutely no doubts that Elsie will be fully orally eating very soon.

You should see her at dinner. She is chewing and tasting absolutely everything on the table. There is no hesitation, even with foods that she is unfamiliar with. She's not scared of food anymore! We let her stay at the table as long as she wants to, which often ends up being over 45 minutes! She frequently moves from her own plate over to her sister's abandoned plate, and picks at whatever Evje has left behind,.and then on to any serving plates that might have food left on them. There is a huge trail of dropped and spit out food that she leaves behind, but the quantities that she is *trying* to eat and chewing and tasting and *enjoying* are just amazing. She has never been this interested in food, and has never wanted to eat this much. She has never even expressed before ever in her whole life that she was hungry. Now I hear it all the time, ha ha. She's going to figure it all out, soon! This kid loves food!


Wednesday, June 24, 2015

Tube Wean, Day 2

So today was awesome. We're still working on chewing and swallowing solids without spitting any out, but she is absolutely rocking the liquids and soft solids!

Just as a warning, this post is fairly boring as it just lists that foods that she did and didn't eat, but I just wanted to write it all down so that I don't forget!

We had some friends over for breakfast. Elsie chewed and spit out some french toast and sausage, dipped her finger in the syrup multiple times, and then drank about 4 or 5 ounces of orange juice.

We munched on some pickles and crackers, and then we went to the park. Yeah it was super hot today, but we persevered and went to the park anyway. We took along some water and grape juice, peanut butter Ritz Bits, and a little tupperware with peanut butter and a spoon. She really likes the peanut butter crackers, and licked off most of the p.b. and gummed up some of the crackers. She also ate a few spoonfuls of p.b. and drank juice and water.

Lunch was Ramen Noodles aka Crazy Noodles, which Elsie loves, but spits out. There was also a puree fruit pouch squeezy thing, which she was trying hard to eat, but just kept getting too much in her mouth and spit it all out. Then we broke out the guacamole, and it was a huge hit. She dipped her veggie straws and crackers in the guac, and also ate it by the spoonful.

Snack before naptime was a few ounces of milk and several spoonfuls of yogurt, all mostly swallowed with just a few spit-outs. After nap, we had a little snack of grape juice and cheese and veggie straws. She got pretty anxious again before dinner, and I saw my hangry child come out again just like yesterday, ha ha.

When dinner was ready, she dug right in! We had spaghetti and meatballs, plus garlic bread. She loves noodles of any kind, but again, had a hard time swallowing. But the bread was a big hit. She swallowed several small pieces of bread. She's starting to figure out that if she takes small enough bites and chews thoroughly, then she'll be ok to swallow. It's starting to come together! She also ate several spoonfuls of spaghetti sauce, possibly a few small pieces of meatball, and a few ounces a milk. We brought out the guacamole again and she ate several more spoonfuls of that. After dinner, we went outside to play, and she worked her way through another chunk of bread, with most of it going down the hatch! She just keeps getting better at swallowing, one little step at a time.

The girls took a bath and then before bed, we brought out the ice cream. Elsie ATE a whole scoop of ice cream, tipped the bowl to drink the melted remains at the bottom, and asked for more. Not a single bite was spit out! I couldn't believe it! I was too surprised to even take a picture. She went to bed happy, and I am going to go to bed happy. Can't wait to see what she does tomorrow!

Tuesday, June 23, 2015

Tube Wean, Day 1

Today was great! We met Heidi this morning, and she's super nice and fun, and it was so easy for my kids to be right at ease with her. We started out with just getting comfortable with each other, playing outside and blowing bubbles. Then of course, since we had been playing outside in the heat, it was only natural that we go inside and have a drink together.

The rest of the day was pretty relaxed; just doing most of the same thing. We ate when we were hungry, and drank when we were thirsty. There was honestly nothing special or significant about what we did; just that it was all about being natural and calm and not making a big deal of things. We worked to help Elsie become more comfortable with food, and not stress about how much she ate, but just that food and drink are good!

Elsie asked for food throughout most of the day, and whatever she wanted, she got. She chewed up about 6 pickles, a ton of veggie straws, crackers, ice cream, and some other random things. She drank a lot of grape juice (thanks, Grandma Linda!) and some milk and some water. At lunch, we had mac & cheese and applesauce. She loves mac & cheese, but is still chewing and spitting most of it out, She wasn't crazy about the applesauce, but tried it. Then after she had "eaten" a whole bowl of mac & cheese, she asked for a banana, and chewed up almost half of a banana. She's never done that before. Usually it's one bite, spit it out, and no more. But she loved the banana this time and was chowing down on it.

After lunch, we played some more, and she snacked on some veggie straws and graham crackers. Get this: she ATE almost half of a graham cracker! ATE IT!!! Those graham crackers are so dissolvable that they melted in her mouth as she chewed it, and she gummed down half of one without spitting out hardly any!

Before dinner, Elsie was getting really hungry and asking (more like demanding, haha!) for food. She was so impatient, it really reminded me of myself being hangry! So funny. She chewed on some shredded cheese and more banana and some veggie straws while I cooked dinner. For dinner, we had some grilled chicken, potato wedges, and broccoli with cheese. She loves chicken, and chewed it up the best she could, but chicken is kinda chewy, so she didn't swallow much, if any. However, we had fry sauce with the potatoes, and she loved that. She drank more than an ounce of grape juice and almost an ounce of milk with dinner, which is HUGE for her! Then I made a peanut butter banana milk shake, and she drank more than an ounce of that!

We are making so much progress with drinking here; she didn't choke or cough on any of the liquids today! She usually coughs or chokes after the first few swallows, but not today. It was fantastic. So we're going to run with the tasty liquids, and tomorrow will make more milk shakes, soup, and other easily swallowed foods.

Heidi is really excited with Elsie's progress. She said that most kids don't get to where she is until day 4 or 5 of their wean. Her oral motor skills are good, and are improving. She is extremely confident that Elsie will be successful. As Elsie increases her confidence in swallowing liquids, she will progress to swallowing solids. Elsie is trying so hard and is doing fantastic! We had to change her shirt three times today because of all the food she had chewed up and spit out all over. This kid loves food, and I know that soon, she will be swallowing it!

Monday, June 22, 2015

Getting ready to wean

Elsie's tube wean officially begins tomorrow!!! You have no idea how excited I am! I have every confidence that Elsie will be successful with the help of our Speech Pathologist Heidi.

Side note: we've had a lot of people wondering what company we are doing our tube weaning through. After we had initially booked our first therapist from Europe, there were a few issues and we had to break off our contract with him. Luckily, we quickly found Spectrum Pediatrics in Virginia, who have been absolutely incredible to work with, and offered to have one of their therapists come to our home. Same service, different person. Heidi Moreland is our Speech Pathologist who will be arriving in our town tonight, and will start our tube wean tomorrow. We are so so thankful to be working with Spectrum Pediatrics; honestly, they are amazing and I would recommend them to anybody interested in doing a tube wean.

The weaning officially begins tomorrow; however, we have been preparing for it for 5 days now. Last Thursday, we began slowly reducing the amount of food that Elsie gets through her feeding tube. I have been hesitant to share this information publicly, because I'm afraid that people will misunderstand and think that we are cruelly starving Elsie and withholding all food from her. That is absolutely not what we are doing. The amount of calories she usually gets has been reduced. She still gets food through her tube, and her normal amount of water. We are not starving our child. Promise.

Starting yesterday, Elsie starting showing real signs of hunger. She is asking more and more for food to eat orally, which is great. The fact that she is associating food with appeasing her hunger is a huge step. Although we have reduced her tube-fed food, she can have all of the food orally that she wants. She is still chewing and spitting out the food, but is drinking a greater amount of liquids than before with less choking. Elsie is also swallowing more amounts of liquid foods like a pineapple smoothie and a soft-serve ice cream cone. She is trying so hard to eat and wants to eat.

I have every confidence that Elsie will be successful with this tube wean. I know it will be hard for her and for me, but I have no doubt that she can do it with Heidi's help. We can't wait to get started tomorrow!

video

Wednesday, June 10, 2015

Thanks-giving

We met our fundraising goal for Elsie's tube wean, which will take place starting on June 23. We are so unbelievably excited for this to happen! We never would have been able to do this without the help of so many friends, family, and neighbors, as well as complete strangers. I want to take some time and publicly say thank you to all of those who helped us reach our goal.

From the GoFundMe and outside donations:

John & Wendy Casperson
Verla Cooper
Joan Wright
Linda Cooper
Gil & Janice Baker
the Dangerfield family
Mrs Grimm
Kathy Pettey
Jodie Crowder
Steve & Julie Teerlink
Anne and Dave Hansen
John & Nancy Ferderber
Carol Morley
Mike Nesbit
Bertha Hall
Nola Jensen
Amy Garvey
Carol Cheney
Bob & Karen Loutzenhiser
Mary Woodard
Kathleen VonHatten
Michelle Geoghegan
Jessica Wang
Nicole Lynch
Shirley Handy
Betty Koehler
Leo & Elaine Boynton
Mary Bailey
Richard Westover
Savannah Atkinson
Valerie Baugh
Ron & Mary Brunner
Joe Hansen
Karri Sloan
Michelle Shaw
Faye Girsberger
Jenn Schram
Jeff & Carol Call
Terri Critchlow
Teresa Bell
Dorothy Bradford
Dean & Joanne Frandsen
Kathy Mortimer
Carol Brown
Diane Duckworth
Sandy Clark
Juliana Coulam
Neysa Xanthos
Jenny Edmundson
Tiane Allred
Anonymous Anonymous
Patti Smart
Linda Shill
Nancy Miller
Marie Wardle
Jan Peart
Denise Jay
Mark Nesbit
Paul & Diann Macbeth
Arthur & Jenn Westover
Tanya VanPapeveld
Cherry Gardner
Annie Opfar
Lynn Despain
Vicky Todd
Jeff & Kathy Karren
Paige Maughan
Harley Hansen
Tonya Johnson
Joyce Stevens
Rob Pelton
Shannon Clarke
Kitt Ludlow
Mary Mathis
Kathy Newbold
Donna Davis
Sarah & Cameron Sagers
Heidi Gerber
Debenham Fam
Prasha Tuladhar
Dave & Marilyn Gillette
Carolyn Sagers
Carla & Barry Nelson
Laura & Richard White
Jolene Nelson
Lisa Peshell
Andrea McDonald
Teresa Edwards
Allyn Grosjean
Bob & Linda Westover
Lucy & Glen Greager
Roberta Macdonald
Debbie Smart
Lesa Gallegos
Brittany Lund
Jana VanDenBerghe
Joseph & Millie Sagers
Christel Longoria
Molly Anthony
Kristin Vinik
Jenny Lake
Suzanne Lynch
Rayetta Croft
Randall Hunsaker
Tami Higbee
Shani Fisher
DeeAnne Squire
DeAnn Butler
Sage Kotsenburg
Thad LeVar
Heather Maile
Heather Buttars
Carrie Wareck
Jared Shimanek
Aileen Cawley
Lorna Kimball
Jen Williams
Ashley Eves
MM Cary
Joe McKay
Audrey Parker
Shannon Hill
Grace Baker
Kathryn Gnagey
Clay Westover
Melissa Wright
Dawn Wells
Christy Shepherd
Megan Matthews
Cathy Bird
Lori Kennedy
Tiane Allred
Kristen Openshaw
Svetlana Konakova
Karen Pelton
Nate & Deanna Warner
Anne Hansen
Jan Schalk
John & Roxy Glassey
Donna Baines
Ashley Kirkpatrick
Ilse Wilson
April & Tom Bishop
Charlotte Greager
Rebecca Simmons
Candace Johnson
Karri Sloan
Jessica Cole


From the Bake Sale, I wish I could thank all of you in person, but there were so many who came and helped. We are so grateful for everyone who helped and who came to make purchases, despite the pouring rain. We were so amazed by the generosity of so many good people.

A special thanks goes to:
Vicki Lambert
Tami & Nate Higbee
Kadie & Claire Nielson
Steven Sharp Nelson
Lorna Kimball
Audrey Parker
Ashley Kirkpatrick
Trish Judd
Marlene Feveryear
Megan Greenwood
Stacey and Kate Timmerman
Jessica and Tyler Cole
Carla and Jennae Nelson
Kathy Newbold
Penny Taylor
Amy Timmerman
Eric Westover & Family
Bob & Linda Westover
Rachel Kartchner
Brenda Westover
Rhonda & Roberta, who were there in spirit
Christina Coleman
The Mossman family
The Blackhurst family
Holly Davies
Jeni Larsen
Blackhurst family
Mossman family
And of course, last but not least is Riley and Ramona Mathis, who did the brunt of the work and made this fundraiser become a reality! We never could have gotten this far without you.

So many people have come together to help us with our burden. Friends, family, neighbors, people that I haven't seen in years, old and true friends, people from my childhood, friends of friends and friends of family, plus complete strangers. We are so extremely thankful. There are so many good people in our lives! We are so blessed. We'll never be able to say thank you enough but your kindness and love will not be forgotten.

Elsie's feeding tube wean will begin on June 23. We don't have specific details yet, but will share them when we know. I will post updates throughout the wean on how things go. As the date gets closer, I keep thinking of things that will change when Elsie doesn't need her feeding tube anymore. I'll have a whole shelf in the freezer and in the fridge that will be empty. No more daily blending of her food. No more cleaning up messes that she has chewed up and spit out. No more unexplained vomit. The day is drawing near, and it will be a fine day when Elsie can eat on her own.

No more wrestling with tubes in tummies!

One day, no more button in belly.