1 Week Down...

1 week of intensive feeding therapy down, ??? number of weeks to go...

We ended today on a very good note with Caden's feeding therapy. Michelle, the therapist, didn't do any feeding sessions today. Caden's nurse did 4 sessions, Greg did 2 sessions and I did 1 session. I've had the most practice before today so Michelle wasn't too worried about how I would do. In fact she told me I was a natural at it. :) That gives me confidence, but of course, adds a bit of pressure also!

The feeding sessions this morning with his nurse were a little rough at times, but she managed to pull it through and finish the session. I think Caden knows he can get away with more with her so is pushing it more. :(

I did the hardest food for Caden: lentil soup pureed. Although it is pureed, it still has a grainy texture and he has a slightly harder time with it than everything else. So, lucky me, I get to be the one to do it. Yesterday it took me over 20 minutes to get him to eat his ½ ounce of soup because he was testing his boundaries. But today went MUCH better! It only took me about 9 minutes to do the same amount. Yay!

For the last session of the day, Michelle left the house and had Greg do the whole thing on his own. Then she had me call her when he was done to let her know how it went. Caden and Greg both did very well and the session lasted just under 5 minutes and Caden ate the whole ½ ounce of avocados without any trouble at all. You can watch the video below to see just how well they did. :)

I am in complete disbelief as to how well this week went. It is truly amazing how Caden went from refusing anything in his mouth to taking bites off a spoon in just a few hours. Absolutely incredible!

I asked Michelle today if she could put a ballpark estimate on how long she thinks it will take for us to get Caden off the g-tube... Obviously there are lots of variables and there is no way to predict the outcome with certainty. But based on how well he did this week, she anticipated that Caden would be done with the g-tube in less than 6 months! However, she cautioned that he might still need more help in order to tolerate textures and work with him on other skills. Of course, I was floored by the thought that within 6 months Caden might not need his tube for food anymore so I didn't hear much that she said after that! I will try to do my very best to progress him as much as possible to get him there. But I also realize that there could be setbacks and I need to prepare myself for that. Time will tell but God is good and I know his timing is perfect.

Please continue to pray for Caden and his willingness and desire to eat food orally. I know what a difference this will make in his quality of life in the long run. What an incredible way for us to end 2010. I am ready to see what the new year has in store for us.

Eating Update

We have completed 4 days of Caden's intensive feeding therapy. I was trained on Wednesday on the specific protocol to follow during a feeding. Yesterday, Greg and Caden's nurse, were trained as well. Because we are dealing with behavior issues, we have to be VERY careful how we react to him during a session. Any small thing can give him the control and decrease our progress. He was doing really well with Michelle (the therapist) and me. But as soon as the nurse took over, he started testing her big time!

She is a very kind, compassionate person and she is having a hard time not trying to console him when he gets mad. He doesn't get mad very often during a session thankfully. He has handled everything amazingly well. But he knows that his nurse is more compassionate and he is trying to see what he can get away with.

Michelle said she has never really seen a child like Caden before. She said most kids will either scream or cry, outright resist the spoon, or just comply. She said Caden seems to have overcome the fear he was feeling initially and doesn't seem to have an issue swallowing or tasting the food. He still has texture issues though. However she said the way Caden tests us is very subtle. He will almost make a game of it and it might take a couple times before we even realize what he is doing. He is extremely bright and intelligent with how he tests his boundaries. This is a very developmentally appropriate thing for him to do at this age so that is good. It just means we need to be on our toes when we are doing his feedings.

I will try to do one more update after today to let you know how he is doing. But overall we are thrilled!


This is Dr. Patel in the background taking video of Caden eating. She is the director of Clinic 4 Kidz. And Michelle is the therapist doing the feeding.

Day 2 of therapy

Day 4 of therapy

Day 5 of therapy

This video shows him eating avocado for the first time. And getting a few sips of juice at the end as well.

Eating!

On Monday, Caden started his intensive feeding therapy program through Clinic 4 Kidz. This is an in-home based feeding program which uses a behavioral philosophy in dealing with kids with feeding disorders. We were put on the waiting list of this program as of December 28, 2009 and we started the program on December 27, 2010. It took exactly 1 year for him to start. I have been very discouraged about this. I thought all along that we were missing out on the opportunity of getting to eat by mouth before he got too opinionated about it. I knew that the younger he started, the better the outcome.

Little did I trust in God's timing... This whole year, Caden has been focusing on many gross motor skills. Because of this, many other things have taken a back seat, so to speak, including his speech and language and eating abilities. As kids develop, they typically focus on one skill at a time and once they have mastered it they change their focus to another area. I never considered this when thinking about his eating. But, it makes sense. Caden only truly mastered the art of walking about a week before Christmas. That meant once he did that, his brain was able to switch gears and work on something else. Apparently that is eating!

Dr. Patel is the clinical director of Clinic 4 Kidz and Michelle is the therapist working with Caden. They were both in our home on Monday to get him started. The initial visit covers 5 consecutive days for about 10-11 hours/day. It is truly amazing what they have been able to do with Caden. Dr. Patel was only here on Monday but she is in touch with Michelle to follow-up on Caden's progress.

Even on the first day, Caden was willingly allowing small bites of food in his mouth. This is ground-breaking for him! He has NEVER in his whole life WILLINGLY allowed food in his mouth. They started with a goal of getting him to eat ¼ oz of food in a session. We have been doing about 10 sessions/day each lasting between 5-15 minutes. He did so well the first day that on day 2, they increased his volume at each session to ½ oz of food. He has to eat the whole thing before he can get down otherwise he learns he can refuse food and we could end up back in square 1. Luckily he has been doing this very easily so it hasn't been a problem.

And, to completely surprise us all, including Michelle, he has been signing for food in between sessions. He will sign the word and then walk to the high chair to be picked up. Michelle said she has never worked with another child who did that.

On Wednesday I did my first sessions with him and he did pretty well with me. He had a couple moments of testing me to see how I would react, but I was able to stick to what Michelle had taught me. He figured out fairly quickly that I was serious about what we were doing.

He's done a variety of foods including vanilla coconut milk yogurt, strawberry & peach soy yogurt, blended applesauce (to make it as smooth as possible), pureed bananas, pureed sweet potatoes, pureed carrots, pureed lentil soup, and today we are going to do avocado. He has a hard time with anything with texture, but so far seems to be doing okay with different flavors.

Caden has far exceeded my expectations with how well he would do this week and the week isn't even over yet! If things continue like this, when Michelle comes back at the end of January for 2 days, I think he will have made a lot of progress. Just check out the video I posted below. It looks like he's been eating by mouth his whole life! Thank you all for your continued prayers in this process. The journey is certainly only beginning. We have a long way to go.

Christmas

Christmas was a lot of fun this year. We stayed home and my parents joined us for a few days. It was nice to be home and in our regular routine leading up to the holiday. I think it helped make it less stressful for all of us.

Kyler was counting down the days all week and was so excited about it. Caden didn't really know what was coming and didn't really care one way or the other. But we knew he had some fun toys waiting for him so we were excited for him.


The kids got to open one gift the night before. This was their matching Christmas jammies they got to wear that night.


Then the next morning when they got up we had a nice breakfast and then opened presents. We didn't tell the Kyler we were going to open presents until after we ate so we had a nice quiet breakfast before the chaos ensued.

Kyler got a couple different kinds of train tracks because he is still obsessed with trains and building creative railroads. Caden got several toys all involving balls because he is still obsessed with any size or kind of ball. It's looking like Kyler is going to be some kind of architect/engineer and Caden is going to be a ball player of some kind. ;)



Greg gave me an iPhone for Christmas and I am absolutely in love with it! Awesome gift from an awesome husband. :)







After Christmas dinner, we sang Happy Birthday to Jesus because he is the reason for the season, after all. We used a cupcake because we had enough goodies in the house and didn't want to make anything too big.


We had a wonderful Christmas and we are so truly blessed by our family and friends. Thank you all!

These Feet Were Made for Walkin'

As of about a week before Christmas, Caden has fully mastered the art of walking. It took him about 2 months from the time he took his first steps. He lacked the confidence he needed to really take off. But those days are gone. He now toddles all around the house as if it was no big deal. I am completely amazed at how far he has come. What a wonderful Christmas present to us. God has blessed us incredibly!

Drive-Thru Nativity

Friday night, December 17, we dressed the kids in their pajamas and loaded them in the car to go to the drive-thru nativity at the Roseville Seventh-day Adventist Church. We have done it once before when Kyler was less than two years old and I thought it would be something he would really enjoy now. It was raining and we weren't sure if they would be doing it in the rain or not but we decided to head over there to find out.

We were happy to get there and find out it was still happening, rain or not. The way it works is they have volunteers give you a CD to play in the car which narrates the scenes you drive by. There are 10 scenes (if I remember correctly) and there are actors at each one portraying a different story from the life of Jesus. As you stop at each scene you listen to the narration on the CD. Kyler really enjoyed it and loved going through.

I took several pictures from the car but it looks like it is snowing in every one. It wasn't really snowing, but it was raining. I really hope the actors and volunteers didn't get sick from being out there all night in the rain. What a blessing we got from it. I plan on making it a holiday tradition for our family.

Happy Birthday Jesus!

On Friday, December 17, I got to help out in Kyler's preschool classroom. I love to do this, but I was especially excited to participate because they were having their “Happy Birthday Jesus” party. I guess it's a day not too unlike all his other school days except for a bigger snack. But there is definitely more excitement in the air.

The parents signed up to bring certain items for the party and while the kids played, I helped (along with one other mom) divvy up all the food onto plates for each of the kids and teachers. Then we set the tables with all the plates. In addition to the fruit, cheese cubes and jello jigglers, there were sugar cookies for the kids to decorate with frosting and sprinkles as well as ice cream cups for dessert.

Before the kids ate their snack, they sang Happy Birthday to Jesus. It was so sweet! Kyler had so much fun, but you sure can't tell from this picture. :) What a fun way to end the last day of school before Christmas break.

Warm Water Therapy

Last summer Caden was in warm water therapy for a few months. It is essentially physical therapy in a warm water pool. However, Caden was not impressed with it and refused to let the PT hold him or work with him in the water. We ended up taking a 3-month break to see if we could get him more comfortable in the water again.

We recently started back up again with the warm water therapy. The first session in the water did NOT go well. It lasted about 10 minutes with Caden screaming most of the time. This last week though, he did so much better. He let the PT hold him and do different things with him. And, he didn't scream the whole time. I had to be in the water near him, but I didn't have to hold him. He even stayed in the water for over 30 minutes. It was a really great session!

I am so proud of him and how much better he did in the water. I wouldn't say he loved it, but he did so much better than he ever did before. If he continues this way and allows the PT to work with him, this therapy could really help. I am really excited about it! We'll see how he does next week.

Trimming the Tree

No, not the Christmas tree... the mulberry tree in our backyard. It needs to be trimmed back to the nubbins every year. Last year Greg did it by himself and was pretty sore the next day. However, this year because of his shoulder injury following his bicycle accident, he was unable to do the trimming himself. He hired a teenager from our church to come and take care of it.

It created a huge pile of leaves on the ground which Kyler had a ball jumping and playing in! Unfortunately I was not at home when the trimming took place and I was unable to get a “before” picture. But you can see the “after” picture below. Our tree is now naked. :)

Kyler in mid-air leaping off our deck into the pile of leaves

Look at the sheer joy on his face

The trimmed tree creates quite a pile of leaves and branches on the ground

Here's our naked tree - amazing that by next summer it will be completely filled in again, providing great shade for our yard

Burning the Mortgage

Saturday, December 11 was a BIG day at our church! We officially paid off the mortgage for our building. It was a 15-year mortgage and we paid it off in less than 8 years!!! Greg & I have been members at our church for over 10 years now and we love everything about it. This is just one example of how God is using the people of our church to do big things.

I got these pictures from another member of our church. These are our two pastors, Greg Webster (on the left) and Walt Groff (on the right). It is amazing what God has accomplished through them. On the 11th we celebrated the pay-off of our building by burning the mortgage. How often do you get a chance to do something like that?! We are so blessed to be part of such an incredible church!



Love the symbolism with the pastors praying, the smoke in the foreground and the cross in the background

Adventist Health Christmas Party

Thursday, December 9, we attended Greg's work party. Kyler came with us but Caden stayed at home with a sitter since we are not taking him out in public right now. We just can't risk him getting sick. The party was held at the Radisson Hotel and the food was great. Kyler behaved himself very well that night and also got a Hot Wheels track from Santa that he loves. We were able to get a picture of the three of us together which turned out pretty well. You can see Kyler's personality shining through!

The Perfect Tree

On Tuesday, December 7, we went in search of the perfect Christmas tree. Well, I should say perfect for the price we wanted to pay for it. :) We didn't go anywhere exotic to find it, just to our nearest Home Depot. They actually had a decent selection.

Caden was happy when we first got there, but quickly decided he was done with pictures and didn't care about getting a tree. Kyler on the other hand was very excited about the whole process. He had been begging for days and probably even weeks to get a tree. So when the day finally came, he was ecstatic. We selected our tree, loaded it on the roof of the car, and drove home.





After arriving home, Kyler helped Greg get it in the stand and I helped get it in the house. Once it was in place, Kyler and I took a break to enjoy cups of hot chocolate in our special Christmas mugs. This was a real treat for him since we don't do hot chocolate very often.





Then we were ready to put stockings up and decorate the tree. This has been my favorite Christmas with Kyler because he is so excited about decorating and everything that goes along with celebrating the season. Seeing the joy in his face and the excitement through his eyes is one of the best things about Christmas. We had fun trimming the tree with lights and ornaments. This year I had fun telling Kyler the history behind all our ornaments because they are each unique and special. Caden wasn't too sure why we had a tree in the house now and was content to sit on the couch with Greg and watch while Ky & I decorated. What great memories we are creating with our children.

Preschool Christmas Concert

On Monday, December 6, Kyler's preschool class took a field trip to Winding Commons, a senior living facility near the school, to do a Christmas concert. Kyler had been looking forward to this for the previous week and kept asking me what day he would get to go sing. When the day finally came, he was lined up in the back row and didn't want to stand. By the time the residents came in, Kyler sat down and stayed there for the rest of the performance.

It was a fun day because the kids sang for the residents and then passed out art they had made for them. You could tell how much they enjoyed having the kids there. Even though Kyler didn't cooperate well, I think he still enjoyed himself and I know the residents loved it anyway!

Kyler is in the back row on the far right (almost out of sight on the picture)

After the performance with the residents seated behind him

Standing in front of the Christmas tree with his buddy, Tommy

Potty Training???

On December 4, Caden decided it was time to pee pee on the potty. We weren't really thinking about potty training, but he seemed interested. And for several weeks, he has been telling us “pooh pooh” before he poops. Of course he hasn't done that on the potty yet. But he is showing an awareness on this subject that Kyler never showed this early!

For several days, Caden went pee pee on the potty many times and seemed really excited about it. But then after awhile he decided he didn't want to do it anymore. So we are just following his lead and letting him tell us when he is ready. But he is already doing more than Kyler was at this age. What a champ! Whenever he is ready is fine with us. :)

It might not look like it, but that is actually a cheesy smile on Caden's face :)