Sierra Railway

Over Memorial Day weekend, we took a quick trip over to Sonora in “gold country”. It was a short get-away but we had a lot of fun. The highlight of the weekend was when we took Kyler to ride the Sierra Railway in Jamestown. It is part of a state park and he LOVED it! To say my son is obsessed with trains is an understatement! It was Caden's 1st ride on a train and he enjoyed it as well but not to the same degree as Kyler. We had a fun time and came home Sunday night. We did some work at home on Monday and then it was back to our regular routine on Tuesday.

Waiting to board the train

Waiting for the train to leave the station

The boys were having so much fun as we steamed down the track

The big steam engine

Kyler in front of the Round House - he has now decided he needs a Round House for his Thomas the Train set :)

Caden did really well navigating the uneven ground

Preschool Graduation!

I can hardly believe that my little boy graduated from preschool this year. I can't believe he is old enough to go into Kindergarten next year. I know I have said this before, but we are going to miss Christ Community Preschool so much! His teachers there are amazing and have done such a great job with him. He is not the easiest kid in the class and has his challenges. But they have handled him with such love. I can really see God's love shown through them in their interactions with the kids.

On Friday, May 27, they had a small graduation ceremony at a local park. They made the kids cute little mortar board caps with tassels and everything. So cute! The only challenge was getting them to stay on their heads! The teacher for each group of kids presented them with a diploma and a hug. Kyler's group teacher is Miss Sharon and we have absolutely loved her! In addition, he also got to have Miss Shellee as his group teacher a couple times/month. So we enjoyed that as she was one of his teachers in the 3's class last year. What a fun day. :)

My little graduate :)

Teachers Miss Shellee & Miss Sharon with Kyler's group (L-R): Evan, Kyler, Landyce, Logan, Ian, Alix & Hannah

Miss Sharon giving Kyler his diploma

There he is with his diploma

I am so proud of my boy!

All Decked Out

Greg's parents came down for a long weekend from May 19-22. During this time, I did some training with Greg's mom on how to do Caden's oral feedings, learn his general routine, etc. in order to prepare for our trip when she will be watching him for 2 weeks. While we did the training, Greg's dad helped pull out our old deck, which was riddled with dry rot, and build a new one.

I am so excited about our new deck. We have more usable deck space as they added another board on either end. And, there was one section by the house where the previous deck had a large opening in it. The new deck covers that area. So the square footage increased quite a bit. It looks so good!

Kyler was quite the helper too. He used the crowbar to help pull off the old boards. He helped bring in the new boards. He made sure the drill batteries were charged up. He handed screws to Greg or his dad whenever they needed them. And overall, he “supervised” all the work being done. :) He was really cute about the whole thing!

It was a huge job, but they all worked really hard and the result is fantastic. I love it and so do the boys. Unfortunately it has been raining a lot since it got finished so we haven't been able to use it much. Hopefully after we get back from our trip the weather will be nicer and we can sit outside and enjoy. Thank you to Greg and his dad for doing such a great job!

Kyler wielding a crowbar and actually doing a pretty good job with it!

Greg placing new supports for a stronger deck.

Getting everything ready for the new deck boards.

The deck is coming right along.

The boys standing out on the new deck.

Greg putting the stairs on the side.

Greg and his dad standing by the finished product, sealed and all! Great job guys!

Baby Shower

On Sunday, May 22, I attended my sister-in-law, Natalie's, baby shower. She is due July 19 and is having a boy. I am really excited to meet my new nephew this summer. Congratulations Natalie! We are very excited for you and Bret! :)

Open House

On Thursday, May 12, we went to open house at Kyler's preschool. It was really fun for us to see all the work the kids have done throughout the year. The teachers at Christ Community Preschool do an amazing job putting everything together.

They measured the kids at the beginning of the year and again at the end of the year and Kyler grew 2 inches! He also gained 3 pounds from September to May. :) When asked what he wanted to be when he grew up, he said, “An ice cream truck driver and a train engineer.” Gotta love that! :)

I know I mentioned this already, but we truly love this school and love the wonderful teachers there. They have been instrumental in Kyler's life. We love you Miss Sharon, Miss Sherry, Miss Shellee, Miss Nicole, Miss Debbie & Miss Diane!



Kyler with Miss Sharon, his snack group teacher :)

Bright Start Love

On Tuesday I was really touched when I took Caden to speech therapy. To give you a little background, we have gone to Bright Start Therapies for therapy for many years, starting in 2007. Kyler received speech therapy there from 18 months – 3 years old, finishing right after Caden came home from the hospital at 2 months old. Then we started at Bright Start with Caden for PT when he was only 5 months old, so there was only a break of about 3 months that we weren't going there for therapy for one child or the other. So I would say we have gotten to know the owners/staff there quite well.

The owner of the clinic is Caden's speech therapist and her husband runs the clinic. Over the years we have gotten to know them pretty well and Caden immediately took to Dave. He loved him from the very beginning, even as a little baby. As Caden has gotten older, it becomes more and more obvious how much he adores him. In fact, one of his first two-word phrases was “Hi Day-Day.” He calls Dave, “Day.”

In therapy on Tuesday, Karen told me Dave had come home one night talking about Caden and how he was his “little buddy.” Dave said how much he loves him and enjoys seeing him every week. Karen said she felt the same way. She told me what a joy Caden was to work with and how she looked forward to every session with him because he is such a sweetheart. She said Caden was one of those kids who have had a profound impact on her and she knows she will never forget him. She is also VERY happy with the progress he is making and said she expects him to make HUGE gains in his speech and language in the next few months. In fact, she even ventured to say he will “probably” be age-appropriate by the time he turns 3!

Hearing her tell me all that made me cry to know how special my little man is. I mean, I know he is special, but to have other people recognize it and acknowledge it is something else. He is truly a sweet spirit and we are so blessed to have him in our lives. I mentioned something about Karen on facebook and what she had said about Caden. One of my friends responded with this: “Sounds like a God kiss for you Carey. I think the most beautiful thing to experience on this planet just may be someone loving not you, but your child.” I was very touched by this comment and it made me cry also. I think she is right. Somehow it is so special when someone loves your child almost as much as you do. Someone who can see how special they are and love them for it. So, if you have someone in your life like that, let them know. It could be just what they need to hear.

Tell me you don't love that face! He is so adorable!

Dr. Van Gundy

At our monthly Mended Little Heart support group meeting on May 9, we were lucky enough to have Dr. Jeff Van Gundy come do a presentation. He is my boys' cardiologist and his specialty is Interventional Cardiology. He doesn't do a lot of speaking engagements so I was really excited when he said “yes” when I asked him. He did a great job showing us parents exactly what goes on during a heart catheterization.

The very first repair he showed was a child with pulmonary valve stenosis which is Kyler's defect. Dr. Van Gundy is the one who did his cath to balloon open his pulmonary valve when he was just 3 months old. It was really cool to see how it works and how he did it.

I am completely amazed at the things they are starting to do via catheterizations. The better the technology gets, the more repairs will be able to be done in a cath instead of having open heart surgery. That is very exciting!

Dr. Van Gundy did a great job and was willing to answer a lot of questions after his presentation. It was a great meeting and we are hopeful he will be willing to get more involved with our group in the future!

Volunteering

On Monday, May 9, I volunteered in Kyler's preschool classroom for the last time this school year. I was really excited to be there because I love seeing Kyler in his element. He really loves this school and I am so sad the year is coming to an end. On the way to school Kyler was actually crying because he said how much he is going to miss his friends there. Next year he will be at a new school and will make all new friends. I didn't realize how hard this would be. :(

One of Kyler's favorite things to do during free play at school is to build train tracks, or anything else for that matter. He just likes to build things. He almost never does crafts, but he loves to build. So I had to get a picture of him with one of the creations he made that morning.




The day started off well and I was having a great time. But unfortunately, Kyler decided during his group time that he didn't want to participate and was being very rude and disrespectful to the teachers and to me. It was really sad for me to see that. I asked him if he would be acting like that if I wasn't there and he told me, “no.” So the bad attitude was just because I was there. :( That is the way the day ended. I told Kyler in the car on the way home that I was really sad that he acted that way. It was a hard way to end the year for me in terms of my volunteering in the classroom. I know he acts much better for the teachers when I'm not there though and every other time I've helped, he has done very well. Maybe this is his way of expressing his own feelings of sadness that he is going to a new school next year and won't be with the same friends or teachers.

Mother's Day

My Mother's Day was pretty quiet this year. Caden decided he wanted to party on Saturday night so he was awake from about 1 – 5 am. That meant neither Greg or I got much sleep. But Greg was kind enough to let me sleep in after that. I think the best part of my day was Greg taking over all oral feedings for Caden. These can be very stressful and I do the vast majority of them, since I am the one home with him most of the time. So to have an entire day off was pretty nice. Then, we went to John's Incredible Pizza for an early dinner with the kids. We ended the day by having a small fire in our backyard at Kyler's request. Our patio furniture has a small fire pit in the middle of the table. We never used it before and Kyler was begging to test it out. It was pretty low-key day and I didn't have any cooking or feeding responsibilities which made it very relaxing. Kyler even cut me some roses from our back yard to enjoy. I sure do love my boys and am so lucky to be their mom. :)

My adorable littlest man

Here's my beautiful roses Kyler cut from our yard and my two handsome boys who gave me the best title in the world: Mom! :)

Kyler and Greg enjoying our little fire

1st Sleepover

On Friday, May 6, Kyler had a friend over for his 1st sleepover. We invited the children of some of our dearest friends over to spend the night. Brayden is 6 and Elizabeth (Ellie) is 3. It was a lot of fun and the kids had a blast. I do have to say there is a reason I didn't have 4 kids! But, that being said, they all did really well. Brayden and Kyler are like brothers; they love each other and they fight with each other.



On Saturday morning, we had pancakes and strawberries for breakfast and then we packed the kids up and drove to church. It was so awesome because they sang Bible songs all the way there. There is nothing sweeter than listening to children sing songs about Jesus!



Overall it was a fun time and we loved being able to give our friends a night off. They lost their baby daughter only a few weeks ago and really needed some time to reconnect. I would love to do it again sometime.

Mother's Day Sing

On Friday, May 6, Kyler's preschool class held a special performance for Mother's Day. They sang several songs they had prepared for the occasion. It was so adorable! I was so proud of Kyler because he actually participated and sang every song. In case you don't remember, when his class performed for the Christmas program, he refused to sing anything and sat down and pouted the whole time. This time was so different and I was impressed!

All the kids did such a great job. I could hear Kyler's voice singing LOUDLY above the rest. At least this was an occasion he could do that for a good cause. Even his teachers commented to me afterward how well Kyler did. Everyone was so proud of him. :) He even made me a pretty flower pin to wear with his picture in the middle. That is pretty amazing also since he never wants to make any of the crafts at school.

The teachers at this school do such an amazing job with all the kids and many thanks go to them for putting this all together! We LOVE Christ Community Preschool and will greatly miss them next year.

Reflecting

There are times in a person's life when they look around and see how blessed they are to have what they have. I have been through one of those times recently. Some of our closest friends were pregnant with a baby girl and were so excited about it! This was their third child and the baby they wanted to complete their family. Unfortunately, at their 20-week ultrasound, they were told there were some serious problems with her and they needed to do an amnio. The amnio results showed that their precious daughter had Trisomy 13, a chromosome defect where there are 3 copies of the 13th chromosome instead of only 2. This is accompanied by multiple organ issues. In her case, it was affecting her brain, her heart, and her kidneys from what they could tell from ultrasounds.

They made the incredibly difficult decision to carry on with the pregnancy and pray for a miracle of God's healing. They named her Gabriella, which means “God is my strength.” They were told she would not survive to term and would likely pass away in utero before being born. This is one of the most difficult things you can hear about the precious baby you are carrying.

Up until they received their amnio results, our journeys were very similar. We were also told that Caden would not live and that he likely had Trisomy 13 or Trisomy 18 (he ended up having neither). But our amnio results showed very different things than theirs. That is where their journey took a different path. We still didn't know what Caden's outcome would be due to the heart, diaphragm and lung defects he had, but at least we knew he didn't have a chromosomal issue as well. He had a chance.

We didn't know if Gabriella would be healed or not. Ultimately that was not the case. However, we also prayed for her to be born alive so our friends could spend some time with her and be able to say goodbye. This prayer was answered! Our friend went into labor at 34 weeks and Gabriella was born alive! They got to spend an incredible hour showering her with love. Their two older children got to meet and hold her as well. They were able to get some amazing photos of her and their family as well, which they will always treasure.

I was and still am completely heartbroken for them. I think part of why my heart hurts so much for them is because this was supposed to be us. This was supposed to be Caden's outcome. I don't know why things turned out they way they did for us. I don't know why they had to suffer such a tragic loss and we didn't. I don't have the answers. But I do know that my heart hurts and I wish I could take their pain away. I also know their faith in God is what is sustaining them through this loss. The hope and faith that they will get to see her again and hold her in heaven is what helps them get through each day. They have handled this situation with such amazing grace and strength that I believe only comes from above. I could only hope to have handled everything with the same grace as them if we had lost Caden.

I am writing this because I want you to take a look around and recognize all you have to be thankful for. Life is too short so please remember to tell the people around you that you love them. Don't take your children or family for granted. No matter how bad things look, you can always find something to be thankful for. I am so thankful for my wonderful husband and my two handsome boys. And I am even more thankful for a heavenly Father who loves us more than we can possibly imagine and gives us the chance to live eternal life with him in Heaven. It gives me hope that this world is not all there is. There is so much more and all we have to do is accept Jesus Christ into our hearts. I eagerly look forward to that day when Jesus comes again and my friends (and anyone else who has lost a child or other loved one) is able to be reunited with them. What a wonderful and glorious day that will be!

Feeding Update

It's been awhile since I have given an update on Caden's feeding therapy so I think now is a good time to do that! This process has been much slower than I had hoped. But in the last month, he has taken huge leaps and strides to move things along. I am now starting to see a faint light at the end of the tunnel when I used to only see darkness.

As of Friday, April 29, Caden is officially taking in more calories by mouth than through the g-tube! I wondered if we would ever reach this milestone. To give you an idea of what his schedule is like, here it is:

Breakfast – 4.5 oz oral puree + 2 oz liquid; 2 oz tube
Lunch – 4.5 oz oral puree + 2 oz liquid; 2 oz tube
Afternoon – 4.5 oz oral puree + 2 oz liquid; 4 oz tube
Dinner – 4.5 oz oral puree + 2 oz liquid; 2 oz tube
Night (after he's in bed) – 4 oz tube

TOTAL: 18 oz oral puree (not counting liquids), 14 oz tube!

This is so incredible, I can hardly even believe it! We have a few more sessions with our feeding therapist in the next month and we are hoping to advance him more. Currently everything he eats has to be pureed. He doesn't handle texture well as he starts gagging and retching. But we are taking baby steps forward. For example, we used to have to puree applesauce to get rid of its texture. But Caden has progressed enough that we don't have to puree the applesauce anymore (woo hoo!). And, with yogurt, we don't avoid the small pieces of fruit in them anymore. He eats those and we are trying to increase texture in other small ways as well.

In addition, Caden drinks 2 oz of liquid at every feeding. This is a difficult thing for him to manage but he improves every day. He drinks from a small medicine cup and learns how to coordinate opening and closing his mouth and when to swallow, etc. Things that come naturally for most kids.

It is so great to see this progress. We are hopeful that in the next few months he will no longer need the tube feedings at all. But even when we stop using the tube, the doctors will probably want us to leave it in place for a few more months to make sure he continues to grow and gain weight without it before they remove it. And, even when the g-tube is gone, Caden still has a LONG way to go before he is “age-appropriate” with what he eats. If you look at a typical 2-year-old, they are not just eating purees. He will still have to learn to tolerate texture and then work up to being able to chew foods, etc. So, the journey is far from over. But we are thrilled with how far he has come. Way to go Caden, we are proud of you!