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!