Wednesday, December 8, 2010

Happy Holidays!

I've been struggling with a Christmas post this year, because I'm not sure I can put into words how far we have come. Perhaps I'll just show you.

Caroline meeting Santa for the first time. She could not keep her eyes off of him!

We've been trying to teach Caroline how to smile for pictures. The other night she got the smiling part down, but added in the hands under the armpits....we'll take it!

We had a Halloween gathering with 4 other families who all weaned their children from feeding tubes this summer. It was so fun to watch the kids enjoy the festivities, especially the trick-or-treating!

Caroline enjoying her birthday cake!

Family outing to the pumpkin patch to celebrate Dominic's birthday!
Caroline continues to thrive, and Mike & I continue to marvel at how far we have come. Thanks for being there for us through this incredible journey. I sure hope that 2011 brings more sweet and peaceful moments for our family and yours.
Leslie Mike & Caroline

Monday, October 25, 2010

Long Over due........

and Caroline turns two!

Caroline enjoying one of her favorites....."pink frosting with sprinkles please!"

Caroline's first adventure to a restaurant dinner. Macaroni and cheese and cantaloupe....two of Caroline's favorites!

Enjoying the jump house at Louisa's birthday party!

Carrot soup.....yum!

"What were you worried about mom? I got this totally under control."

So its been a crazy couple of months adjusting to life with an eating toddler! We have certainly enjoyed our summer of watching Caroline grow more and more comfortable with food. She has done an amazing job of exploring, touching, tasting, and eating her way through the season. I can finally say with confidence that Caroline is an eater. We haven't used the feeding tube for over a month, and in that time, there hasn't been a single day when I was worried that she wouldn't eat or drink something to make it through the day. She has even eaten on vacation and while congested (two of the last and biggest hurdles per our feeding therapist). Sure, we are still working on a balanced diet, and sure there are definitely days that Caroline survives on crackers and cheese and not much else, but she truly seems to love eating and she is exploring new foods every day.
We love packing Tupperware dishes full of raisins and cheese instead of packing a cooler full of syringes. We love spending our evenings reading and working out instead of blending Caroline's next tube-fed meal, and we love watching Caroline smile with pride as she devours her favorite foods! There is a serene beauty in watching Caroline finally have control over how she nourishes her body. When, what, and if she eats. And with her new-found control has come new skills, confidence, and calm for our entire family.
This past weekend, we celebrated Caroline's second birthday. We had a wonderful celebration full of family, friends, and food! Caroline loved playing with her cousins, opening her presents, and licking the frosting off her cake. We are so blessed to have such an amazing daughter who teaches us lessons every day about strength, perseverance, and grace. Caroline, you are an inspiring little girl and I'm so lucky to be your mom!

Tuesday, June 22, 2010

Caroline is Eating!!!

That's right. Caroline is learning the joys of eating. We've been working up to this for quite some time, but about two weeks ago we decided to cut back on her tube feeding to see if her interest in food would perk up. It certainly has!!!
Here's the back story:
This spring Caroline learned to drink sips of water. It all started when her Dad had a great idea.... He said, "why don't we use her tube feeding syringes to drop tiny droplets of water into her mouth." I thought he was crazy, but the idea worked! At first Caroline was a bit apprehensive about the game, but she loved the reaction she received when she let a drop of water go into her mouth, and I think she figured out it felt pretty good. The drops of water slowly turned into small sips of water from our glasses at the dinner table and eventually her own sippy cup. As her trust in water grew, so did her trust in food. Caroline spent the spring months mouthing all kinds of different foods......dried mangoes, cheerios, pretzels, apple slices, and cheese to name a few. She was especially interested in foods we were eating and she loved to join us at the dinner table. The funny thing was.....she rarely swallowed. The food would go in and then just as quickly come right back out. In fact, gagging routinely occurred if the food accidently got too far back in her mouth. Now this is fairly common for tube-fed children, but we were having trouble convincing her to swallow much of anything. Furthermore, I had visions of this stage lasting for years.....eating still felt very far away.
In May, we had the unique pleasure of working with a German psychologist who specializes in assisting tube-fed children learn to eat. He assisted 3 local families in an intensive weaning program for 10 days. Caroline and I were lucky enough to join the other families during the group treatments. Caroline participated in daily play picnics where there was food scattered all over the floor and several other children and adults were playing with and eating the food. Caroline loved the picnics, and I loved collaborating with the other mothers and Markus about tube feeding, feeding therapy, and how to teach your children to eat. The three families did great with the wean and the entire Seattle feeding community learned a lot from Markus' visit.
Markus was the first person to tell us....."I think Caroline really wants to eat. She just needs to feel hungry." While it felt scary and foreign not to feed your child, we realized Markus was right. In fact, during the first few picnics Caroline was putting more food in her mouth than any of the other children.....and the other children hadn't received tube feeding that day! As we watched these 3 other children learn to eat, our confidence grew in the process and we knew Caroline could do it too.
Since Markus' visit, I've been working closely with a feeding therapist at Seattle Children's who helped me to orchestrate a slow and methodical decrease in Caroline's tube-fed calories. The first few days we skipped breakfast, the next few days we skipped breakfast and lunch. By day 7 and 8 Caroline was clearly hungry and the food that used to exit her mouth just as quickly as it went in, slowly started to linger in her mouth a little longer, and sure enough she eventually started swallowing! She ate yogurt, she ate waffles, and she ate cheese! Now....two weeks later, she is slowly growing more confident in swallowing. She is drinking a lot of water, a little bit of milk, and eating a variety of foods, including cheese, tortillas, scrambled eggs, corn puffs, and macaroni and cheese.
This new and fragile skill is definitely still emerging and some meals are far better than others, but Caroline is growing more confident by the day. She now eats 4 meals a day and most of our "therapy" is to make eating fun! We eat with Caroline, we play games in the highchair, and we do anything possible to teach Caroline that eating is a great time....not something to fear. Table manners and a balanced diet will come with time. At this point swallowing anything is a reason to celebrate! Be thinking of us as we continue down this journey. I haven't quite breathed a sigh of relief yet, nor does it truly feel "real". But, we are progressing and that is reason to celebrate! this picture is from our beach trip back in April, but it was the only one I could find with her sitting next to food. For the record, she did eat a little that day! I guess I need to take more pictures of Caroline eating.....stay tuned

Saturday, June 12, 2010

Summer Days!

Caroline loves throwing rocks into the water at Magnesun Park.
She'll sit on the shore for half an hour watching the ducks swim by, throwing rocks, and hanging out with her Dad. Let's hope for more sunny days ahead!

Thursday, May 13, 2010

First Family Vacation!

We took our first family vacation in April. The three of us packed up the car and headed for the Oregon coast.
Caroline loved swimming in the pool....

and walking in the sand.

It was great to realize that tube-feeding isn't that difficult while on vacation. We packed up our blender and brought along the foods we normally blend from home.

We've gained a lot of confidence in Caroline's blenderized diet. I spend about an hour every other night blending up a balanced diet of fruits/veggies/dairy/grains and protein. I love feeding her foods from our table and the improvements we've seen in her health, energy, and development are tremendous. Caroline doesn't throw up anymore and she can tolerate about 6 oz of food in 3o minutes time.......a far cry from the days we were syringing in 10 mLs of formula every 10 minutes.

Caroline is slowly improving her relationship with eating as well. She loves to join us for meals and she'll put a variety of foods in her mouth. She is even swallowing water and a few select other foods....sometimes. She is enthusiastic about trying and we are slowly seeing the fear and anxiety around food melt away.

Friday, March 19, 2010

Caroline's New Tricks!

Check out Caroline exploring new things!

Who knew taco soup would be such a hit?

Caroline loves to take her baby for walks.

How sweet it is to see Caroline smiling with food on her face!

Sunday, January 24, 2010

How is Caroline?

You are probably wondering.... "Where in the world did Leslie go?" and "Why is she not telling us how Caroline is doing?" surely isn't for lack of Caroline growing and changing that I haven't been blogging. Caroline is doing fantastic. She continues to fill our days with awe and delight. We've had a fun couple of months watching our Caroline shine.

Caroline heading to the park. As you can tell by her smile, its one of her favorite activities. She loves to swing, climb on the equipment, and check out the puppies.

We're definitely still working on eating. One of Caroline's favorite things to do with food is feed it to us! She is slowly getting used to touching and playing with food and on good days she will take small tastes.

We have made remarkable strides with her tube-feeding in the last several weeks. She is now tolerating small meals throughout the day....~4-6 oz at a time. Caroline eats blenderized table food and this seems to be agreeing with her! She rarely vomits any more, and she "tastes" the food as it goes into her stomach, which seems to be helping her grow accustomed to the idea of putting food to her mouth.

Caroline learned to crawl over Thanksgiving weekend, and our world has never been the same! She motors all around the house and is now learning the joys of being on two feet. It won't be long and she'll be walking too!

We had a relaxing Christmas at home. It was really fun to watch Caroline experience her first "real" Christmas.

I've now been back to work for three months. I work three days per week and we have hired a wonderful nanny who cares for Caroline in our home. Going back to work has proven to be a blessing in so many ways. I love going to work part-time and Caroline really seems to enjoy her time with Jillia.