Praising God

I am praising God for the amazing, incredible miracles I have heard about just this week. Our friends from Stanford, Justin & Victoria Nelson's daughter Moriah had a heart cath on Monday. They found out the pressures in her heart were NORMAL now when everything leading up to the cath showed they were still too high without any options for treatment. God has certainly performed many miracles in this sweet girl's life.

We also just found out about another family we were friends with at Stanford at the Ronald McDonald House got amazing news this week as well. Their son, Bodie, had a rare, inoperable tumor in his abdomen (stage 4 embryonic rhabdomyosarcoma, a cancer of the muscle). He was diagnosed in May 2008 and underwent intense treatment at Stanford and has been in and out of the hospital. He just had scans done which showed the tumor is completely GONE! They were told the tumor would always be there since they couldn't remove it surgically.

If you didn't believe in miracles before, I don't know how you can deny they exist after hearing stories like this. I am completely in awe of what an incredible, loving God we serve! Prayers do make a difference and I am so happy for our friends who are having such joyful answers to their prayers! :)

Developmental Appointment

Today I took Caden to Sutter Memorial Hospital for a developmental appointment. They have a program in place that monitors “at-risk” children for developmental delays/concerns. This includes preemies, cardiac kids and more. Typically in the first three years, they see them 3 or 4 times. We saw them once last summer and this was his second visit.

During the visit he sees a psychologist who tests him for cognitive ability and observes his current skills. Then he sees a nurse practitioner who weighs him, measures him, checks his reflexes, and talks about his overall health, etc. Then the last person we see is a social worker who assesses the home environment, social support and provides any help with necessary resources.

When we saw the psychologist she went through her series of testing objectives and seemed to be impressed with what he could do. There was a few things she couldn't test him for in his age category because it involved crayons and pencils and he wanted nothing to do with them. He just threw them on the floor. (I have to say that my 4-year-old was, and is, pretty much the same way even now!) But even without that, she said cognitively he was pretty much age-appropriate! For us that is pretty big news. Anytime Caden is “age-appropriate” in anything, I do a little dance. :) I don't get to do that dance very often by the way... ;) She told me when she reviewed his file before we came in, she wasn't expecting him to do very well. I agree, on paper, Caden doesn't look very good at all. But when you meet him, he sure is incredible!

The nurse practitioner did her weights/measurements and we discussed several things. She was a little concerned about his small size (same as Dr. Davies, see my recent post about our GI visit). However, not so concerned that she was raising any red flags. But she did want us to monitor him and make sure he picked back up on his growth curve. She told me she thought our visit was almost a formality because she said she could see we were so on top of things already there wasn't really anything for her to suggest or recommend. She said it was clear Caden was receiving the best care possible because of how well he looked. That was a nice compliment for me.

When we met with the social worker, we talked a bit about home life, if we had the support we needed, etc. I told her I thought we were doing well with that. After discussing several things she told me she thought Caden was lucky to be born into our family where it was obvious we were doing everything we could for him. Again, an affirmation like the one from the nurse practitioner.

As Caden's mom, I don't do things for him or fight for him simply to get affirmation from others. I do it because he deserves it. I love him more than words can say and am so proud of him and how hard he works. He is my hero and I will always advocate for him and make sure he has the best I can provide him. I think that is what most moms do for their child. However, I don't think moms get enough credit for what they do. So when someone goes out of their way to recognize what we do, I think that is special. It made my day and filled my cup so I have more, renewed energy to continue fighting for Caden, whatever he may need.

So, I'm assigning everyone homework: Tell a mom you know what a great job she is doing. It will mean the world to her. :)

Shriner's Update

So I have to post a follow up to my previous entry about Shriner's. As I mentioned I was frustrated with the the appointment time being before the staff was actually there to check us in and the incorrect information about going straight to x-ray instead of checking in first. I really didn't give it too much thought after I posted the entry.

Then, yesterday afternoon my cell phone rang: it was an administrator at Shriner's. She told me her name (which I have already forgotten!) and explained that someone forwarded my blog to her. She said she had never read a blog before and mine was the first. She said she was following up on my comments about my experience the day of our appointments.

As we talked, she told me she had already talked to the people in charge of answering the phones and told them they needed to make sure to let everyone know when they called that they have to check in first and can't go straight to x-ray. (The receptionist in x-ray told me I was not the first person to come in and tell her they had been told this on the phone.)

Then she went on to tell me she had spoken with the unit manager in the check-in area. She let him know if they have staff meetings (or anything else), there needs to always be at least one person there to check patients in.

She was extremely apologetic and very nice about the whole thing. She said she appreciated my feedback even though it was in an unconventional way (via my blog). But she really wanted to assure me steps were being taken to address the problems I faced so others did not have the same frustration. The call left me with very positive feelings about Shriner's and the way they do business and resolve issues. I was very impressed with their initiative to follow up on the problem even though I hadn't addressed my concerns to them directly.

So, if you need to go to Shriner's for anything, be assured that your voice does count. I was taken a little off guard by the phone call because I wasn't expecting that. But, the internet certainly makes the world a smaller place. Thank you Shriner's for caring about quality and your patient's feelings and concerns!

GI Compliment

On Wednesday, I took Caden to a follow-up appointment with his GI doctor. The doctor and her dietitian haven't been super supportive of me doing a blenderized diet (BD) with Caden but they were “allowing” me to do it without much of a fight.

We met with the dietitian first and I went over a basic recipe for Caden with her. She seemed somewhat impressed as she made notes about it. Then she asked how it was working for me to do the BD for him. I told her it was working great and I was really happy to be providing my son with real, healthy, whole foods. :) After some more discussion, she said she was slightly concerned that he wasn't gaining weight very well. If he was following his curve, even if he was small, they wouldn't be concerned. But because he was dropping off his curve slightly that was causing her some concern. In her words, she was “mildly” concerned about it but she was willing to give us more time on the diet before “encouraging” us to start supplementing with formula (not going to happen!).

Her suggestion was to increase his daily calorie intake so as to hopefully increase his growth. We just want to see him on an upward trajectory. I agree that is what we want and I told her I would be willing to sit down and work on his recipes to make sure we increase calories.

After waiting awhile longer, the doctor finally came in, followed by the dietitian. The doctor came right up to me and said, “Are you going to start selling this stuff?” referring to the BD. She told me how impressed she was with the quality of the nutrition he was getting in his food. :) HUGE compliment coming from her, believe me!!! It makes me happy to know that I am giving Caden good nutrition with natural, whole foods. I know formula has it's place, but it wasn't working well for Caden and it certainly wasn't providing him with the same nutrition that real food does. I know some orally eating kids at 18 months old are still on formula, but it's usually not the only thing they get. They are also eating regular food. So it doesn't make sense to me that he would be getting 100% formula. And if we can help it, we would like to keep him off of it entirely. We should be able to do that with BD, we just have to tweak the recipes.

I'm so happy that Caden's GI doctor was willing to recognize how healthy he is. She even commented on how “fantastic” he looks. I know it has a lot to do with his diet. He used to have pale, pasty skin and now he has more natural color to him and he is bright-eyed and curious about everything. What we eat makes a huge difference in how we feel so of course that would be true for him as well. Now we just need prayers that he will start steadily gaining weight on BD so he can be healthy and strong.

Shriner's

On Tuesday this last week I had to take Caden to an appointment at Shriner's Hospital regarding his scoliosis. This was our 2nd visit, the 1st being in June of 2009. It started out a little frustrating due to scheduling. We were assigned a 7:45 appointment for x-ray followed by an 8 o'clock doctor visit. I called the office the previous week to confirm when I needed to arrive. They told me I needed to be there at 7:30 and to go straight to x-ray. I double-checked that information with them to make sure I had heard correctly because I remember last year we had to go through a check-in process first. They assured me that was the case.

So I woke Caden up early and loaded him into the car. Thankfully I didn't have Kyler to take with me as well! We arrived at 7:30 and went straight to x-ray. When I got there, the receptionist commented on how early I was and I told her I was just following directions. But when she tried to look Caden up, she said we hadn't checked in yet so I needed to go take care of that first. Grrrr, frustration!

I went back to the check-in area only to be informed by a volunteer that the staff in that area wouldn't be there until 8 due to a staff meeting. Seriously??? So I had to sit there and wait for half an hour with Caden before we could even check in. :( I was not happy about that!

Finally got the x-ray taken and went back to wait for the orthopedic doc. He reviewed last year's x-ray with the one taken that day to see if the scoliosis had progressed or stayed the same. He said the degree of curvature in 2009 was 17 degrees and this year is was 20 degrees. So, on the surface it appeared to have gotten worse. However, he said in his opinion there had been no change due to 2 factors: 1) The technique was different. Last year he was laying down and this year he was standing up for the x-ray. Standing is the preferred method if possible because it shows the scoliosis at it's “worst” due to gravity. 2) There is a 3-5 degree rate of error with imaging technology. So, because the degree change was 3 degrees, he said there was no change and this was a good thing.

He ordered an MRI of the spine to be done in the next 6 months so we are in the process of getting that approved and in place at UC Davis. And, I learned there is a difference between congenital scoliosis (what Caden has) and idiopathic scoliosis (seen more often in older children). According to the doc, with congenital scoliosis the spine is more stiff and is more likely to require surgery at a younger age. He said right now he is putting the odds of Caden needing surgery at 50/50 but he will be able to say more specifically after he has the MRI. In addition, the surgeries for congenital scoliosis are done at a much younger age; typically between the ages of 3-5. I had always thought if he did need surgery for this, it would be when he was much older and something I didn't have to think about until later. But I now know it will be in the next few years if he needs it. :(

Right now we wait for the pre-certification process with insurance and scheduling the procedure. We'll know more sometime in the next 6 months what we can expect down the road. We are praying he will not require another surgery! Poor thing has been through so much already.

18 Months!

Today, Caden turned 18 months old. I can't even believe I am typing that! I have no idea where the time went... It flew by! What's even more amazing is how much has happened in the last two years. In July 2008 I was enjoying the first half of my pregnancy in blissful ignorance of what was to come. Little did we know what we had in store. God is so good and so faithful! He has brought us through this journey and continues to hold us up when we need it.

Let's see... Here is what Caden is doing at 18 months:

He has 2 very clear words: Ball (Bah) and Duck (Duh) as these are his two very favorite things in the world. (He loves to play with any kind of ball he can get his hands on. And, his duck blanket that he got in the NICU at Stanford is his beloved lovie.) Well, I guess that's not entirely true... His VERY favorite thing in the world is Mommy! He is starting to say Ma (Mom) but very inconsistently. Regardless of whether he says my name or not, it is very clear who he wants all the time.

Here is Caden's beloved "Duh" and "Bah"


He has significant stranger anxiety and even has a hard time with people he knows fairly well. He would be happy if Mommy were the only person in his life, I think. Not really. But while this is very endearing, it is a little exhausting and hard to deal with when he has therapy appointments, etc. And, it's a bit of a foreign concept to me because Kyler NEVER had any stranger anxiety. He has never met a stranger in his life. So sometimes I wonder what is wrong with Caden. But then people remind me this is an age-appropriate thing for him to be doing. I guess that's okay. This too shall pass...

Caden signs “up” when he wants to be picked up. Well, sometimes he just cries and I wait until he signs it before I'll pick him up. That just makes him mad. Other times he will come up to me and sign it immediately. It is very cute!

It looks like he is starting to sign a few other things as well, but he is not as consistent so I am not positive it is intentional. But sometimes he signs “Daddy” and “more”.

He can identify a few body parts: nose, mouth, eyes and ears. Of course he will only do this if he feels like it.

In general, he is getting to be more playful. He's been a pretty serious baby until recently. But it seems he is starting to understand what it means to play. He loves to sit on the couch next to me and throw himself down with his head on my lap. He laughs and laughs about it. And, he is starting to laugh when we tickle him. These are all relatively new things for him. It is so cute to see him become his own unique person and have his personality come out.

On the flip side, the older he gets, the more frustrated he gets. He has frequent tantrums that I attribute to frustration. He isn't able to move like he wants to or communicate like he wants to. I remember similar behaviors with Kyler at this age and he had less struggles than Caden. I know it will get better. It already has now that he has a few words and a few signs. His language will expand and he will be able to communicate with us more easily which will decrease his frustration.

I realize the milestones I am listing are not typical for an 18 month old “toddler.” But since when has Caden ben typical? Everything about him is unique and special. I know God has a plan for him and things are going to happen in the right time. It might not be what I think is the right time, but it will happen. Thank you to all of you who continue to follow along on our journey. We are honored and blessed to have you in our lives. Happy 18 Month Birthday Caden! We love you!


How can you not love that sweet face?! :)

Wedding

We left my parent's house in Coeur d'Alene on Thursday, July 1, to drive to Renton, Washington where Greg's sister was getting married on July 4. Natalie's fiancee Bret's parents live there and they were getting married in their beautiful yard. Bret's parents arranged for us to stay with their next-door neighbors which was wonderful! They were so hospitable to us and it made thing so much easier with the kids also. We could walk back and forth for naps and bedtime without having to drive back to a hotel, etc.

Saturday afternoon they had the rehearsal and dinner and we enjoyed that. Greg's role in the wedding was to ask “who gives this woman to marry this man?” since their Dad was walking Natalie down the aisle as well as being the pastor who performed the service. The kids and I didn't have any specific roles aside from providing support and help where needed.

Kyler spent most of his time playing with Bret's children: six-year-old twins, Brandon & Amelia. Natalie assigned me the job of putting together a scrapbook of photos of her and Bret growing up which I gave my best effort as that is not my area of expertise. And, on the day of the wedding, I provided minimal assistance to the person arranging the flowers. Otherwise, I just tried to keep my children happy and quiet and out of the way. I wanted Natalie's wedding to go just as she hoped.

The wedding was to take place at 3 pm on Sunday, July 4. The weather forecast predicted rain that day. Natalie was really hoping that it would hold off long enough for them to get pictures and have the ceremony outside. All the reception tables were set up outside as well. And, just in case, they had a large pavilion tent set up that could house everything.

The rain cooperated long enough for everything to be set up and for the wedding and most of the pictures to be done before it started misting. It was pretty light for awhile but then it started getting heavier. Despite that, we were all able to enjoy most of the reception outdoors without cover without getting too wet. Umbrellas were used by many people toward the end though. And, quite a few people migrated underneath the tent when they were done eating. Overall, it was a beautiful day and Natalie was gorgeous.

When everything had pretty much wrapped up, Greg & I packed up the car and headed out of town. We decided to drive to Monmouth, OR that night and stay overnight with our good friends there. That way we were that much closer to getting home and would make our drive on Monday a little shorter.

We left Kyler with Greg's parents on Sunday night because he is staying with them for the next two weeks. He is at their house in Medford this week and next week they are taking him camping. He has been looking forward to that for awhile. So, Sunday night, we just had Caden with us when we drove south.

The drive went relatively quickly and we got to enjoy many beautiful fireworks displays along the way as people celebrated Independence Day. There were times it felt like we were under attack because the fireworks were so close to the road! The best displays were as we were crossing the Columbia River between Washington and Oregon.

We spent some time with our friends on Monday morning before making the drive the rest of the way home. It is so much easier to travel with one child instead of two. Caden was a great traveler all the way home. It is so good to be home and now we're playing catch up.

1st Haircut

On Monday, June 28, Caden got his first haircut. Well, his first real haircut anyway. While in the hospital, they shaved half his head to place an IV which was never used anyway. Grrrrr! :( But, since then, we have never cut it.

I have been hesitant to do it for a couple reasons. First of all, I knew it was really going to change how he looked. It was going to make him more grown up and I wasn't ready for that. And, secondly, I knew he would NOT like it and was afraid he might freak out completely and we would botch the whole thing.

Greg has always cut Kyler's hair. In fact he cuts his own hair for the most part also. I knew that we would need to do Caden's ourselves because there is no way he would be able to handle going and having it done anywhere. He is too scared around new people and new places. I hope he grows out of that, but right now he's very timid around most people.

So, we did it ourselves. He's had this “tail” growing long down the back of his neck which I took the scissors to. But once I cut that part off, I handed the scissors over to Greg and he finished the job. I was a little worried about how it would turn out based on how much Caden was jerking his head around and crying. But in the end, I think Greg did a fantastic job. My baby is no more, I have a “toddler” now. He looks so much more mature! But he is still 100% adorable! :)

This is how long Caden's hair was to start with

Greg holding Caden still while I took the first couple cuts

Greg taking his turn cutting

As you can see, he was NOT amused!

He was quite unhappy about the whole situation

The final result turned out pretty good though :)

Family Pictures

Since my whole immediate family was gathering together in Coeur d'Alene for the Ironman, we decided to take advantage of the opportunity and have family pictures taken. The following people were there:

My Dad, my Mom, my Aunt Ev (my Mom's sister), my sister Cheryl, her husband, Kent and their two kids, Melissa (13) and Rylan (11), my sister Shelly and her daughter Charli Jo (12), and me, Greg, Kyler (4) & Caden (17 months).

It was a bit of a challenge to get everyone to cooperate... okay, it was a bit of a challenge to get my two children to cooperate. They were the most difficult. Everyone else was pretty good. :) But overall, I think we got some good pictures. Here's a few from the shoot.





The Grandchildren (clockwise from top): Rylan, Melissa, Kyler, Caden, Charli Jo

The extended family (back row L-R): Brother-in-law Kent, Aunt Evelyn, Sister Cheryl, Sister Shelly, Me, Caden, Greg, Kyler (front row L-R): Niece Charli Jo, Dad Charles, Mom Janie, Niece Melissa, Nephew Rylan

Ironman Triathlon

On Sunday, June 27, Greg participated in his very first Ironman Triathlon in Coeur d'Alene, Idaho. He has been training for this for the last year. My parents live in Hayden, just north of Cd'A so we were able to stay with them which was great.

We were blessed to have several friends come to cheer him on as well. Our friends, Ryan & Suzanne Standish drove all the way up from Sacramento with their two kids to support Greg. And, our friends, Randy & Sharla Jamison and their two children drove 8 hours from Boise to see us. We are lucky to have such wonderful friends!

In addition, my wonderful sister was able to watch my children for the day so I could focus on being there to support Greg and cheer him on. And, my brother-in-law was amazing by being there to photograph Greg along the route wherever he could. He got some incredible pictures! What a wonderful family I have!

The few days leading up to Sunday's race were filled with short training excursions, various triathlon events and meetings. It was quite busy. So when Sunday morning finally arrived, I think we were all ready. Well, as ready as we could be.

Greg's goal was to do it in 12 hours or less. The race started at 7 am. Here are the results:

Participants:
2703 registered
2291 started the race
2096 completed the race


Race Start Time: 7:00 am

Swim Distance: 2.4 miles
Greg's official swim time: 1:27:45
Greg's overall rank after the swim: 1563

Greg's transition from swim to bike: 13:05

Bike Distance: 112 miles
Greg's official bike time: 6:01:52
Greg's overall rank after the bike: 972

Greg's transition from bike to run: 4:53

Run Distance: 26.2 miles
Greg's official run time: 4:19:38

Race Finished: 7:07:13 pm

Official total time: 12:07:13
Greg's final rank after the run: 654

What an incredible performance for Greg! I am so proud of him and how hard he worked. What an accomplishment for his first Ironman! He came in 654 out of 2096 people. I think that is absolutely amazing! Here are some pictures to highlight the day.


Me and Greg about an hour before race start

In his wet suit all ready to go

Coming out of the water after the 2.4 mile swim

Coming out of the swim into the transition area to bike

Headed out of the 1st loop of the 112 mile bike ride

Now he's running in the 26.2 mile marathon

Getting his picture taken right after crossing the finish line

Showing off his finisher medal

Me and My Iron Man!

Our friends Ryan & Suzanne Standish were there to cheer Greg across the finish line

At the Ironman participant luncheon on Monday