Halloween

We had so much fun on Halloween! I was able to borrow costumes from friends for both of the boys and they were absolutely adorable! Caden was a tiger and Kyler was a lamb. Soooo cute! :)

Cutest. Tiger. Ever!

Adorable Lamb!

After dinner, we took the kids to a Trunk or Treat at a local church near our house and went through their parking lot collecting treats for the boys. Most of them you had to participate in a game first; many of them involving throwing bean bags through the holes of a board. Kyler did a really good job with that and got his candy. And because Caden was so little, most people would just try to give him candy without having him throw the beanbags. But Caden really WANTED to throw the bean bags, so he did it every time. I'm not sure he got them through the holes or not, but he was close. And considering most of them were high up in the back of a truck or something, I would say my little man did a great job! Then they would give him his candy and he would try to throw that through the holes! Hilarious! :) But he loved taking the candy and putting it in his treat bag. It was so cute. He didn't want anyone else to put them in there but him. Mr. Independent!

See, he's even adorable from behind!  :)

Here we are: Caden the Tiger, Carey the Mom, Greg the Doctor, and Kyler the Lamb

After that, we went home and did a little bit of trick or treating on our street with a few of our neighbors. We are pretty good friends with some of them and they got such a kick out of the boys' costumes. It was fun. By then it was getting quite late, so we took the boys home and got them in bed. They both had a great time! :) I would say it was a fun and safe Halloween.

Brayden's Birthday!

October 30 is Kyler's best friend Brayden's birthday. He turned 7 and had his party at John's Incredible Pizza. Kyler was so excited to go to the party and play with his friend. All the kids had a blast. First they had pizza and cake. Then Brayden opened presents. Then it was off to play on all the rides and games. For those who haven't been there, it's kind of a glorified Chuck E Cheese's.

Kyler followed Brayden around everywhere and wanted to everything with him. He adores his friend and is really going to miss him when we move. I am so glad he was able to go to the party and celebrate his birthday with him.

Kyler and Brayden on the Frog Hopper

Can't you tell how much Kyler loves Brayden?  He doesn't want to let go.  He's not really that much shorter than his friend, but he is standing behind him and is not standing up straight.  :)

Leatherby's!

I wanted to celebrate Greg's big promotion with some friends, so on Saturday, October 29, we got together with about 30 people at Leatherby's Family Creamery. They are known for large portions of ice cream. In fact, our pastor uses them as an example in his sermons when he is trying to describe “abundance.”

I thought it was the perfect place to celebrate because of that. We are experiencing the abundance of many blessings in our lives right now! We had a fun time celebrating and visiting with friends. What a great evening. Thank you to everyone who came and for sharing in our joy. We are so grateful to friends like you who have supported us all along our journey. That will be the hardest part about moving: leaving such a great network of supportive friends behind. We will miss you all!

Look at the abundance of that serving!

The man of the hour!

In case you were wondering, we shared the banana split  :)

Hawaii

Originally I was supposed to fly over to Hawaii while Greg was here in order to deal with the house we are moving into as well as getting Kyler registered for school there, etc. However, things changed... So, that meant that when I flew to Hawaii, I got to have a nice relaxing vacation! I got here on the 21st and Greg and I will fly home together tomorrow, the 27th.

We are so blessed to have such wonderful family to help us out. My parents are at our house right now taking wonderful care of our boys. My mom has been working hard feeding Caden and getting him to/from his therapies. My dad has been getting Kyler to/from school and taking care of lots of other things around the house and yard for us. It is such a relief to know the kids are in good hands. And I am loving having the down time to rest and rejuvenate so I can be ready to hit the ground running when I get home.

Life at our house is never dull and it's been difficult to keep up with the daily responsibilities, let alone get much done to get ready to move. Thankfully my parents will be staying for a couple more weeks to help out. Hopefully that means I can make some headway on the long list of things to do!

In the meantime, I am thoroughly enjoying my quiet time in Hawaii while Greg finishes up his job here. I am blessed!

Reunited with my hubby after 2 weeks apart! :)

Beautiful Kailua Beach

Greg and I with our leis given to us by a friend at church

Ko Olina beach lagoon

Ahhh Paradise!

Even though it's the tourist thing to do, I had to have a Dole Whip at the Dole Pinapple Plantation

Such a beautiful flower at the Botanical Gardens in Kaneohe

Feeding Update

I realized it's been a long time since I have given an update on Caden's feeding therapy. Things have been going really well. In fact, it has been two and a half months since he has received any food through his g-tube! The last feeding through his tube was on August 3. :) However, for about two more weeks, he still received a few ounces of water through the tube overnight. But as of the end of August, he has not had anything through his tube!

It's hard to believe I am even saying that, to tell you the truth. :) But, that being said, it actually makes life more difficult at this point. Caden does NOT enjoy eating by mouth. If it were up to him, he wouldn't eat at all. He refuses to feed himself and he will only eat pureed food. He gags/retches on anything with texture. It is quite a struggle. Every mealtime is very stressful and involves a lot of focused attention. We can't feed him when the rest of us are eating because we can't do both at the same time. It's exhausting!

We are currently working with our feeding therapist to try to teach him how to chew so we can advance the kinds of foods he can eat. Right now he eats the foods that we eat but I have to puree them. So if we have enchilada casserole and beans, I puree those things for him. I do this in large batches and freeze them in 1 oz ice cube trays, as many people do for babies when they are first introduced to solid foods as an infant. However, if you look at my freezer, you will see that it is mostly filled with food for Caden. There is very little in there for us because we don't have room. He eats a much larger volume of food than a baby, so it involves a lot of work to make sure we have enough food for him.

In addition, we have to keep track of his calorie intake each day because he isn't growing in height and we have to provide documentation to every doctor who asks to prove that we are actually feeding him enough calories. Yet he still doesn't grow in height. He is very tiny and not on the growth charts. For weight he is around the 20^th percentile though. This means we have to make sure he does not get too heavy for his height because that isn't healthy either. It is quite a balancing act.

Because we haven't used Caden's tube for close to two months now, we have talked to several doctors to get their opinion on when they think we can have it removed. At this point, we are planning to wait until next spring to do so. Most of the doctors feel it is best to not remove it before cold/flu season in case we have to use it for any reason when he is sick. In addition, we will have to schedule a minor surgery to have it removed and closed. The pediatric surgeon we spoke with in Sacramento believes there is 0% chance that the hole will close on it's own. Caden has so much granulation tissue around the stoma anyway, that I really want to have it all cleaned out and sutured closed so it looks better anyway. So we will need to find a surgeon to do that in Washington after we get there.

We are ecstatic about how much progress Caden has made. But I ask that you continue to pray for his eating to improve. That he is willing to feed himself and that his aversion to texture will improve. And that he will learn how to chew his food so we can begin to feed him more table food instead of purees. Once we move, we will be on our own for feeding therapy so I am really nervous about that. The guidance and training from our feeding therapist has been invaluable and I don't know what we'll do without it.

Thank you all for your continued prayers!

Moving

I have some explaining to do... I have mentioned in a couple previous posts that we are moving... In December we are moving our family to Walla Walla, Washington. First though, let me back up and fill you in on what you have missed. It's been a crazy few months!

After months of interviewing for different positions within Adventist Health, the company my husband works for, a position became open in Hawaii on the island of Oahu. There is a hospital there owned by Adventist Health and Greg was offered the position of Director of Finance/Controller. After much prayer, we accepted the job offer because we felt it was where God was leading us at the time.

So, Greg began his job in Hawaii at the beginning of September, leaving me at home to take care of the boys on my own. Our plan was to move during Kyler's school break at Christmas. The primary reason for this had to do with Caden's therapies and not wanting to lose them before we had to. When Caden turns three years old in January he will lose the services he has in place anyway, so we figured it made the most sense to wait to move until right before then. That way he would only lose a couple weeks of therapy vs. several months. In addition, it was a logical time for Kyler as well due to his school break.

So, for the majority of September, Greg was working in Hawaii. He was scheduled to be home for about a week and a half at the end of the month before heading back to Hawaii to work for most of October. Just before he flew back to Sacramento, he received a call from the Adventist Health Corporate Office offering him a VP of Finance/Chief Financial Officer (CFO) position at Walla Walla General Hospital (WWGH) in Washington state. WOW! We were thrown for a loop because we had finally made a decision to move to Hawaii and were moving forward with that plan. This came completely out of left field!

All that being said, the CFO position was what Greg has been working for all along and the only thing holding him up was needing hospital experience. So that was why we decided to take the job in Hawaii, so he could get the necessary experience. However, this opportunity came up rather suddenly due to the health of the current CFO at WWGH. He wanted to step down to a lower role due to some health issues so this job opening became available.

While Greg was in Sacramento, he had meetings with several people, including the CEO at WWGH. And we prayed about it some more. After much prayer, we again felt like this was where God was leading us. It was an opportunity we couldn't pass up. To give you some background, Walla Walla is where Greg and I went to college. It is where we met. I worked at WWGH for two years doing Marketing and Communication. We really enjoyed our time there and the thought of moving back was very exciting. It is a small town and we are looking forward to a slower pace of life. In addition, all of my side of the family will be within four hours driving distance. That will be wonderful!

Greg had to fly back to Hawaii to work for most of October. His last day with the hospital there is October 27. He will be home for a week and then he starts his new job at WWGH on November 4. Life changes quickly with us so sometimes it's hard to keep up! We are looking forward to our new adventure and even more than that, we are looking forward to having our family back together again and not have to be separated by oceans or other states.

Bishop's Pumpkin Farm

On October 20, we took another trip to the pumpkin patch. This time we went to Bishop's Pumpkin Farm in Wheatland. I love this pumpkin farm but I haven't been in a few years due to a busy schedule. But this year I made a date with a good friend of mine and her kids so we could all go together. It was a lot of fun and so worth the drive.

Kyler and Caden had so much fun with Brayden and Elizabeth. It was fun to watch them run around to look at everything. My parents came along because they are in town. It was fun to have them part of the outing as well. Caden seems to want to spend a lot of time with Grandpa Charles and it's really cute to watch.

I got as many pictures as the boys would allow... not that many! :) But there are some big smiles and happy faces, so I think they had a great time. I know I did!

So cute!

Ellie, Brayden and Kyler riding the school bus while Caden drives
(although he can barely see over the steering wheel!)

I like this kind of jail! :)

A brief moment when both boys are smiling at the same time

Brayden, Kyler, Elizabeth and Caden

Grandma Janie and Grandpa Charles with me and my boys

Me with my boys on the pumpkin wagon

Dr. Davies

October 20 was bittersweet. Caden had his last appointment with his pediatric gastroenterologist in Sacramento. She has followed him since we brought Caden home from Stanford. She has always been good about getting us the supplies we needed and was supportive of us putting Caden on a blenderized diet through the g-tube. This was a huge thing for us because we did not want to give Caden formula, but a diet of real, whole foods. And, not all doctors support giving a child with a g-tube “real” food. Most advocate for formula because they know exactly how many calories the child is getting that way.

The reason this is our last appointment with her is because we are moving. It is difficult because we will have to find a whole new group of doctors to work with Caden. And, for GI especially, we need to find someone who will work with us on getting the g-tube removed when the time is right. More about that soon.

Last hug with Dr. Davies. Thanks for everything!

Cardio Update for Caden

On Tuesday, October 18, Caden had his regular 6-month cardiology follow-up appointment. This was the first time they didn't schedule him for an echo first. I questioned them on it but they said Dr. Van Gundy said he just needed an office visit. That was fine with me because getting Caden to remain still for an echo is very challenging!

On this visit they did an EKG and took his pulse-ox. Both of those were good. Caden was so cute with the EKG. I told him ahead of time they were going to put little stickers on him and attach the wires, making sure to tell him it wouldn't hurt. And he was so good and calm for the whole thing. Then when it was time to take the stickers off, I told him it would pull on his skin a little bit. He didn't complain too much, but he was very glad when they were all off him.

When Dr. Van Gundy came in, he asked a lot of questions about how Caden was doing and we chatted about several things. I have noticed lately how warm, and sometimes sweaty, Caden is. I know this can sometimes be related to heart issues, so I wanted to talk to the cardiologist about it. The temperatures outside have been cooling down, yet Caden still remains very warm. Now he has always run a little on the warm side but not running a fever. Just warm to the touch.

After discussing this with Dr. Van Gundy, he felt very strongly that Caden should have an echo to determine if there is a problem. In Caden's case, he does not feel it is an issue with his coarctation. He said it is more likely pulmonary hypertension, which he has a history of. This is the first time with either of the boys that there has ever been a concern when we have had a regular follow-up appointment. So it makes me a little nervous to say the least. His echo is scheduled for November 17 so please keep us in your prayers until we get more information.

Calmly waiting for the EKG to be over

Once it was done, he wanted to help pull those stickers off!

Field Trip

I was really excited to go on Kyler's class field trip to Zittel Farms pumpkin patch on October 18. It was the first school trip I got to go on. I love that he has a small class and they can do lots of fun things. When we first got to the farm, the owner took the kids on a long hay ride all through the farm. The farm isn't very big so he did lots of looping in and around and back and forth and we managed to cover a lot of territory. The kids thought it was great fun!

Then we all got down and Mr. Zittel talked to the kids about horses, goats, and burros. From there we walked over to the chicken coop and got a tour with another person. She talked to the kids all about chickens and pigs. Then she took them and showed them a goat's mouth. We learned that sheep, goats and cows do not have any upper teeth. They only have bottom teeth. I never knew that so that was really interesting.

The kids got to play in a fun play area and then pick out a small pumpkin. They also got to see a goat at the top of a ramp use it's teeth to pull on a rope to pull a box of feed up the ramp to his mouth. It was hilarious to watch! He definitely knew what he was doing!

After that, the official tour was over, and the kids ran around and played while doing some more exploring. It was so much fun and I was so glad I got to go and take Caden with us.

The kids taking it all in on the hay ride

Back row: Caden, Kyler, Nate, Immanuel Front row: Emily, Wesley, Simon, Jasmine

Seriously, that is the best smile I could get out of both of them!

Kyler wanted to do a silly face for one of the pictures - not sure if he's trying to be a pirate or what...

Group shot with the teacher - the sun was very bright!

Kyler with Mrs. Altman, his wonderful teacher

Fall Festival

After soccer on October 16, we stayed at school for the Fall Festival. I bought Kyler a wristband so he could do all the bounce houses and games as much as he wanted to. And I got some other tickets for us to buy food. Kyler chose pizza while I had freshly made corn dogs. Caden was hilarious because he was loving the live band they had playing!

After eating first, Kyler was off and running to all the games/activities. Caden was happy to follow around and watch Kyler most of the time. However, there were a few times where he ran off so fast I didn't see which way he went. Thankfully there were some other parents there helping me keep an eye on him since I was on my own. :)

All in all it was a fun day. We were all pretty exhausted by the time we headed home.

My attempt at a picture with both boys smiling

Kyler paid a ticket to put himself in jail - I certainly wasn't going to complain

Kyler showing off the pumpkin he decorated

Gabriella

October 15 is National Pregnancy, Stillbirth and Infant Loss Remembrance Day. People all over the world are asked to light a candle at 7:00 pm in remembrance of a child that lost their life all too soon. Several of my friends have lost children during pregnancy, were born stillborn, or died shortly after birth. It is such a tragic loss for these families and my heart breaks for each and every one of them.

I think part of the reason I feel so deeply for their loss is because Caden was not supposed to live either. He was not expected to live to be born. But he did. He was not expected to live more than a few minutes or hours. But he did. I often wonder why we were granted a miracle and so many other families were not. I know I can never answer these questions until I get to heaven. But what I do know is I am determined to NOT take my children for granted. They are a gift and I need to cherish every moment with them because you never know when that might be taken away.

On the 15th, I lit a candle in honor of all the children whose lives were cut short. But this year, it was especially in honor of Gabriella. She would have been 6 months old on October 2 if she had lived. But tragically she only lived for one hour. That hour was the most precious gift the family could have asked for. An hour I was lucky enough to be a part of. Being a part of her short life changed my life and perspective in so many ways and I pray I never forget what that day felt like.

If you know of anyone who has lost a child, please don't avoid the subject with them. That only hurts them worse. It makes them feel like their child never existed. They long to hear their child's name. Bringing it up will not hurt them more. They are already hurting so much and the pain of not talking about it is very difficult. Whatever you do, please do not act like it never happened. Talk to the parents. You do not have to have the “right” thing to say. In fact, just telling them you are sorry for their loss means the world. Just telling them you are praying for them gives them the strength to get through another day. It can be that simple. Just don't ignore it.

Women of Faith

On October 14 and 15 I had the wonderful opportunity to attend the Women of Faith conference in Sacramento. Over the past 10 years, I have been able to attend 4 or 5 times. Every time I go, my cup is filled to overflowing with the love of Jesus. The music, the speakers, the friends. Everything about this event are inspiring.

I am so glad I got to attend this year. We are all hurting in some way or another and to be able to go to a place where that is acknowledged and you are not made to feel bad about it, is so refreshing. Most of us long for a place where we can be ourselves and not feel judged. That is pretty hard most of the time.

One of the speakers made me realize how important true, genuine friends are. I am so fortunate to have a few of these wonderful women in my life. I know they don't judge me, they accept me for my flaws, I don't have to pretend to be someone else when I am with them. Thank you from the bottom of my heart! I love you girls more than you know! xoxo

If you are not familiar with Women of Faith, please go to their website: http://www.womenoffaith.com/ and see if you can find a location near you. They tour all over the United States and it is so worth going if you can.

Here are a few of the wonderful women I attended the conference with this year. The group from our church was about 65 people. :)

Neurology

On Friday, October 14, Caden had a routine follow-up appointment with his neurologist. I am happy to report it went very well. Dr. Asaikar is very good at what he does and has a great reputation in the community. It is amazing to me how in only a few minutes of observing Caden, he can make incredibly accurate statements about how he is doing.

Most of Caden's life he has really struggled with anxiety, particularly in a clinical setting. It could be a doctor's office, hospital, etc. I'm sure it is the “white coat syndrome” due to all the medical stuff he has been put through. But as he has gotten older, I have been able to talk to him about what is going to happen at the doctor's office and let him know they aren't going to hurt him, etc. Once he was around 2 years old, that made a HUGE difference for him.

I could tell him we were going to see the GI doctor and she was going to look at his tube and listen to his chest and back to make sure he sounded okay but she wasn't going to hurt him. He would listen to me and say, “okay.” I could tell him we were going to see the cardiologist and he was just going to listen to his heart and lungs but it wouldn't hurt and Caden would say, “okay.” But if I forgot to tell him where we were going or why, and we went into a doctor's office, he would visibly tense up and start clinging to me. It was amazing the difference.

So while we waited in the exam room for the neurologist, Caden played happily and talked to me. When the doctor came in he commented immediately about how Caden's anxiety seemed to have gone away because he was still calm and relaxed.

Then, he told me he wants to continue to see Caden on a yearly basis because he is “intrigued” by him. When I probed a little more to find out exactly what he meant by that, he indicated that Caden is very advanced and he can't explain it. He said that based on all he has been through, he would not expect Caden to be doing as well as he is. When I asked if he thought that was because of his therapies, he said no. He said it was more than that. But he can't explain it. He said if we are unable to bring Caden back to see him every year that he at least wants us to send a picture of him and a letter describing everything that he is doing so that he can continue to follow him.  I guess he's figuring out what we've known all along: that Caden is VERY special!

Dr. Asaikar might not have an explanation for how well Caden is doing, but I do: God. God is the only way I can explain a lot of things when it comes to Caden. But it's hard to explain that to a medical doctor because they are looking at things from a different perspective. At any rate, I am thrilled with the good report and to know that Caden is actually advanced in something. What a blessing! He truly is our miracle!

Rubio's Fundraiser

On October 5, I took the kids to Rubio's for dinner to support Mended Little Hearts of Sacramento. We were holding a fundraiser there to help raise money and awareness for MLH. Unfortunately the weather was awful and the turnout wasn't so great. But we enjoyed the food and it got us out of the house so that was good. It is probably one of the last events I will do with MLH since we are moving. (Hmmm, I guess I need to make another post about that!)

I am very sad because I have been involved with MLH for awhile now and it makes me sad to leave. But I know the organization is in good hands with new leadership. However, I am sad to not be involved much anymore. I am so grateful for the opportunity we have had to be involved with this group of families supporting each other through some very tough times. I love being able to have my kids involved with other kids with heart defects so they don't feel “alone” and isolated. I want them to feel connected to other kids like themselves so hopefully I can find something like that where we are moving.

Kyler enjoying his burrito