March 8, 2011- We have TWO walkers now!

I'm so happy to report that Hope has started to walk! It's been a couple of weeks, but I haven't had a good video to post yet. It's been SO fun watching her learn and to see the excitement her face that she has learned something new. Each day she walks more and more and is starting to take new risks such as getting up and down stairs while staying upright. The other day we took a walk around the block, and for the first time Hope walked it! She walked about half of it total and she was clearly very tired once we were about half way through. I held her the rest of the way, but I was such a proud mommy.

I had to run into Walgreens for some eggs for baking yesterday and didn't want to get the whole stroller out just to get one item, so I let the girls walk with me. That was quite a chore, I must say. They both wanted to go in separate directions and Peyton is faster than Hope, and they were both intrigued with everything in the store. Thankfully it was just Walgreens and not a large grocery store. I don't think we would have every made it out! Haha. Even though it took some work, I love that they love to explore their surroundings.

Just wanted to update on Hope's progress! We also have everything confirmed for the feeding program in Seattle! We will be going in three weeks!

February 4, 2011

Just thought I would update about Hope's feeding program. I found out that Seattle Children's runs a program much like the ones in Austria and Germany. They have done the rapid wean for the G-tube for a while, supposedly, but made a few changes once Markus from German came over and worked with them. They don't wean calories and fluids down to 0% like Austria/Germany does. Hope will more likely be getting 20% calories right before bed and 80% fluids. I felt more comfortable with this, and also felt more comfortable doing a wean with professionals by my side, considering Hope's medical history. It takes a little bit longer than the European program because the body remembers that it will still be getting food, but it is enough for the children to start feeling hunger and feeling enough motivation to eat. So, we will be going to Seattle for two Weeks on March 28. Peyton will be staying with with Justin and we are working out the details for her care during the day while we are gone.

All of Hope's doctors are on board, and her cardiologist was saying that his doctor friend took their child (100% G-tube fed) to Seattle and was successfully weaned.

This particular program has only weaned a little over 40 children and it has been about 80% successful (in comparison to the 95 % success rate of Austria/Germany) The OT told me, though, that the other children who did not wean had specific reasons, like getting sick or having other developmental problems that affected their progress. So the chances of this being a success are fairly great.

I am going to be going up with a friend of mine who also has a child that is G-tube fed. We are sharing costs of traveling so it will be great to have someone along!

The program is two weeks, we will come home on the weekends, and hopefully stay at the Ronald McDonald house. If the house is full, we will stay in a nearby hotel.

I plan to keep fairly detailed updates about Hope's progress while we are there, because many of the mom's blogs that I have read about their children's progress is the reason that was able to find out about these programs and learn about how they work. I know the hopelessness and frustrations that comes with having a child who does not eat, and the success stories that I have read of kids who were just like Hope, have given me that "light at the end of the tunnel" that I wanted.

There are no guarantees of how this program will go with Hope, because she is in control, as well as God, but it's really nice to know how well other kids have done and I am excited for both Hope and our little friend as well. Anyway, just thought some of you would want the update :)

January 8, 2011

Hope is snuggling with her baby.
The play clothes box was more of a place to sit than it was storage.

Happy New Year!

Another year has come and gone, way too fast I must say. It has been a couple of months since I posted last. Time has flown by so quickly with the busyness and excitement of the holidays.

With the cold weather, we've spend most of our days inside, but the girls have enjoyed a few new things this year. One of their new adventures this year was going to look at the Christmas lights. They really seemed to enjoy them, and whenever we came to new lights, they would shout from the backseat, "lights!" This year is the first year that they've been old enough to really enjoy some of the things that the the holidays bring like opening presents, Christmas lights, and snow. Present opening was fun as well. Peyton, especially, became quite energized throughout the day as she unwrapped more and more toys. To help us have fun inside, their Grandma and Grandpa Knight bought them a little tent with a tunnel to crawl through. They LOVE it and love playing inside of it.

Another thing we started last month was story time at the library. It's been nice to have something to go to that gets us all out of the house. It's funny to watch their personalities when they are in a group. Peyton is a little more shy and reserved. She observes, and then decides what she wants to do. Hope just jumps in and visits or plays.

As far as development and milestones go, both girls are still learning more and more words every day. Peyton uses mostly two word sentences, but has several three word sentences and she even added in a 5 words sentence the other day, "I don't want that sweater." Haha. She used to love all clothes, but now she likes to pick out her clothes and often doesn't want to wear her "sweater." This poses a challenge for me when we are in public and in the cold weather. :)

Hope has many new words and is developing nicely with her OT and PT therapy. She is working on puzzles now and is progressing with her walking. She has just started to leave the couch to walk to something a short distance a way without being prompted. She's done this a handful of times, so hopefully she'll be walking soon!! Her doctor thinks that she may need a brace/shoe insert to help her stabilize more. She noticed that she is having a hard time keeping everything aligned where it should be and that a brace may help her to have an easier time walking. When we see her PT next week we will look into it.

Hope's Dr. is also concerned about her growth. She has really slowed down this year and is still very small, especially in length and head growth. I would LOVE prayers for this. It could be just a nutrition issue since she has spent much of the last year throwing up a lot of her food. We have this under control MUCH more now with the help of one of her doctors, but she has also been referred to an endocrine doctor to make sure that she doesn't have any problems that could be helped now. So we will see about that later.

Hope has continued with the feeding program for her eating. She has made a couple more baby steps. Our next biggest challenge is to get her to chew on something like licorice that she can't bite off so that she can learn to chew.

I have been introduced to a highly successful feeding program that is based out of Graz, Austria. They do Net-Coaching to help babies wean off of the G-Tube. Their philosophies are somewhat different from those we hold in America, but I have talked to several parents whose children had no eating skills whatsoever and were weaned off of the G-tube. Some to liquids like a normal baby, and some to pureed foods or even regular food. I have been in contact with other parents who have done the program as well as the Graz team, and we are hoping to do their Net-Coaching program next month. I am praying a lot about this because I want to make sure it's the right thing for Hope. So far, Hope's doctors and therapists are on board. More to come on that!

God has been so incredibly great to us these past couple of months and He is building my faith daily. I am very excited for 2011 as we will be going through a lot of changes with having two walkers, we will be moving (locally), my husband will have a new job, the girls will start preschool, turn three, etc. All by God's grace, these will be exciting new memories that we will be able to make this year!

Pumpin Patch

We took a quick trip to Mt. St. Helens for the afternoon....

Getting ready for her first hair cut

First hair cut

October Update

Reading their new book..
She was a tad cranky, but the bride cheered her up!
If you have kids in your life, then you understand this...... Getting good pics with toddlers is NOT easy!
There's a smile

Birthday "Pancakes" as Peyton would say.....

Tired from a day's play
Happy Fall Everyone!

For Portland, we've had such beautiful weather this fall and we have enjoyed it so much. We've had a busy, busy month with Birthdays, weddings, family visits, and the Pumpkin Patch.

The girls just turned two this past Saturday. We didn't have a birthday party this weekend because we all were in a wedding on Sunday, so we just didn't want to fill the weekend up too much. We did celebrate with my mom and a friend that was over, though, and the girls had cupcakes. Hope played with hers and Peyton just licked the frosting off of the top of hers.

This weekend, my heart was filled with much gratefulness towards the Lord for bringing Hope and Peyton this far. I am sure every parent has a sense of awe at how big their children are getting as each birthday approaches. I know I certainly do. Those moment when I wondered if they would even make it until their first birthday are etched into my memory and still seem very real. Now, as they sit here at two years of age, reaching milestones that we were told they may never reach, I am just in such amazement of how good God is.

The wedding we were in this weekend was amazingly beautiful. Our friend, Heather, did such a fantastic job at planning. Not a detail was missed. The girls did very well. We walked down the isle with them in a wagon and they sat calmly as everyone watched. At the very end, Hope through a handful of flowers. My mom met them on the side, because we knew they wouldn't last through the ceremony with out several disruptions :) I am eternally grateful for my mom's help this weekend!

As far as milestones go, Peyton is increasing her vocabulary incredibly. Considering that at 18 months she had not even said her first word, I am amazed at how far she has come. She is starting to put two words together, express herself, and communicate what she wants more clearly. She really has a mind of her own and is definitely coming in to her two year old, independent, self.

Hope's vocabulary is also quickly expanding. She probably has 40-45 words now that she says. Most have been learned in the past 1 1/2 to 2 months. Her PT reminded me that because she's been working on her speech so much, that could be a big reason we've seen a little plateau in her motor skills, for walking at least. She is still getting much stronger and I'm sure will be walking very soon.

Hope's new glasses prescription seems to be helping her a little more as well. Her OT noticed right away that her hand-eye coordination improved significantly since the last time she saw her. We are also back to patching for 1 hour a day. The hope is that the new prescription and patching will help her want to use her right eye more and hopefully bring her two eyes to work together. We are praying it works so that she doesn't have to have another eye surgery in the future.

Anyway, that's it for now!

September Update

Today has been exciting! Hope took her first three steps today!!! PT was over working with her. She didn't quite know what she was doing because she was so focused on getting her toy, but I was THRILLED!!

Both girls are developing new words. Hope is learning new words and imitating our words more. Peyton's speech has really taken off. She's communicating very well now. Justin "lost" his keys yesterday and after her bath, she rand out and picked up her toy that she had hid his keys in and said, "keys!" We've been waiting for the day when the girls can remember where they hide our stuff!! Haha.

Peyton is very aware of Hope. She likes Hope to be around when she is and take part in things we are doing. She will take toys from Hope, but usually replaces them with another toy. And if she has too many toys to handle, she will give them to Hope and say, "Niiiice." :)

Peyton has learned the different types of clothing like pants, shirt, shoes, socks, and PJ's. Once she is dressed for the day, she makes sure Hope has clothes too :) It's so sweet to see how thoughtful she is towards her sister. Hope is just as sweet and is learning to communicate that.

Anyway, there isn't too much more to share this month! The girls will be two next month and they will also be in a wedding with us. We are working on throwing flowers out of the wagon. So far, so good! We are spending as much time outside as possible before we go in to hibernation for the winter. We are going to do swim lessons with the girls this fall/winter so we have something fun to do outside of the house. We're very excited for that.