Neurology

On Friday, April 29, I took Caden to see the neurologist for a follow-up appointment. We hadn't seen him since Caden had his MRI back in November. The main reason for doing the MRI was for his spine so the ortho docs could determine whether or not he needed surgery. But because we were doing the MRI anyway, Caden's neurologist wanted them to do the brain at the same time. He wasn't overly concerned about anything, but he did want the information.

When he walked into the exam room and took a look at Caden he couldn't stop talking about how great he looked! He kept saying over and over how impressed he was with Caden's progress and how well he was doing. Then he took us into another room and pulled up the MRI on the computer there and went over everything with us. Actually there wasn't that much to show, since everything looked so good!

The doctor told us that the majority of people have something in/on their brain that looks “off” if you do an MRI. It might not mean anything, but most people have something that shows up. But Caden didn't have ANYTHING wrong. There wasn't even a little spot! I have to say that was one of the most amazing moments of being Caden's mom. They told us during my pregnancy that even if Caden lived, he would be neurologically a vegetable because his brain did not develop properly. So to have a neurologist look at the MRI and tell us how great everything is was incredible! He told us there is no reason at all to limit our expectations for him. He said there is nothing to indicate he will have any cognitive issues that would cause us any concern.

I cannot even tell you how amazing that news was! In fact, after we finished up, I was at the counter scheduling a follow-up appointment and Caden was walking around the office. His neurologist started talking to the other doctor he shares the office with and was giving him a brief health history of all the physical issues Caden has going on. And then he started bragging about him and how well he was doing. He wasn't saying it for my benefit either because I was on the other side of the room in the middle of something else. So it was pretty cool to hear him bragging on my son to the other doctor. I've gotta say, it gave me such warm fuzzies inside.

I left the office feeling so good about things and so happy for Caden's outlook. What a blessing and miracle from God!

Easter Videos

I had to post this video I put together of the kids on Easter. They were so funny! Kyler was so excited he could hardly stand it! Caden was trying to figure out what the point of it all was. But they were both so adorable, you have to watch them to see. :)

Easter Part 2

Like I previously mentioned, we enjoyed the “secular” part of Easter this year as well. Kyler and I colored eggs on Friday. I didn't even attempt for Caden to help me because that would have been a disaster! He might be 2, but in many ways, he is less than 2. I figure we'll try to include him more next year as things might be much easier for him then.

All ready with our eggs!

Such a silly boy!

Caden was running around being funny while we were coloring eggs

Kyler holding the last 2 eggs to dye

There he is with the finished eggs :)


On Easter Sunday morning, Greg and Kyler went to Power Balance Pavilion (formerly Arco Arena) to volunteer for an event put on by a local Sunday church. There were about 40 people from our church who volunteered to help with childcare for their event. Greg's job was to help with a craft table. He had to monitor kids using glitter glue and other fun things in very strong winds outside. There were lots of fun activities for the kids, including jump houses. Kyler had a blast.

Then, in the afternoon, after Caden's nap, the boys did a small egg hunt in our backyard. Caden didn't quite get the idea of putting the eggs into his basket, but he did find one of them all on his own. He picked it up and then promptly threw it back where he found it. :) Then Greg helped him find a couple more.

Kyler on the other hand, ran around like a crazy person from one spot to another. There was no rhyme or reason to the direction he was running, except that he was just wound up! It was pretty funny to watch. He found all but three eggs which Caden found.

Before I could even sit Caden down next to Kyler to get a picture of them with their egg-filled baskets, Kyler had all his eggs open and all over the ground. He was pretty happy with his work!

The boys with their Easter baskets

After the egg hunt - see all Kyler's open eggs?!

I love these kids!


I would say it was a good Easter. We had a lot of fun this year and I suspect as the kids get older, we will enjoy it more and more as they begin to recognize the significance of the occasion.

The Real Easter

This year I have tried to do more with Kyler in terms of helping him understand the true meaning of Easter. It's not all about the Easter bunny, hunting for eggs and eating candy. It is really about Jesus, our Lord & Savior who died for us.

I used the “Resurrection Eggs” with him over the last 12 days. We read a little from the Bible and the booklet that comes with the eggs, before opening each egg and discovering what is inside. Here is what they have inside:

Egg #1 – donkey to identify the donkey Jesus rode into Jerusalem.
Egg #2 – silver coins to symbolize the 30 pieces of silver Judas received to betray Jesus.
Egg #3 – cup for the wine symbolizing Jesus' blood.
Egg #4 – praying hands showing Jesus going to pray in the Garden of Gethsemane before being arrested.
Egg #5 – whip symbolizing the beating Jesus received.
Egg #6 – crown of thorns which the soldiers placed on Jesus' head.
Egg #7 – cross made of three nails representing the cross Jesus was nailed to.
Egg #8 – die in it showing how the solders played a game to decide who would take Jesus' clothes.
Egg #9 – spear showing how one of the soldiers pierced Jesus' side while he hung on the cross.
Egg #10 – linen cloth symbolizing the linens Jesus' body was wrapped in when he was placed in the tomb.
Egg #11 – stone to show how the tomb was sealed shut.
Egg #12 – EMPTY demonstrating how Jesus rose from the tomb leaving it empty!

The Resurrection Eggs


In addition to doing the Resurrection Eggs, Kyler and I made Easter story cookies the night before Easter. It is a very fun way to teach young children about the real meaning of the Easter weekend. I will include the recipe and notes/Bible texts here in case anyone wants to use them next year. Kyler was really excited about it and it really seemed to help him “get” it. Then, on Easter morning, we were able to open the oven and find the hollow cookies! Kyler was so excited to take the seal off the tomb and see how they turned out. When we broke them open you could see they were hollow inside with some rocks (pecans). Such a great illustration of the empty tomb.

Of course, we did the traditional coloring of eggs and Easter egg hunt as well but I'll do another post with that.

Kyler with the supplies: pecans, zipper bag, wooden spoon, vinegar, egg whites, salt, and sugar

Kyler really got into the beating of the pecans - just check out his face!

Pouring in the egg whites while I read part of the story to Kyler

In the mixer getting whipped up

1 tray of cookies ready for the "tomb"

Kyler putting the tape seal on the tomb

Kyler removing the seal from the tomb

You can see the inside of the hollow, rocky tomb

The tomb cracked open with nothing inside


Easter Story Cookies
To be made the evening before Easter

You need:
1 cup whole pecans
zipper baggie
wooden spoon
1 tsp vinegar
3 egg whites
pinch salt
1 cup sugar
tape
Bible

Preheat oven to 300 degrees (this is important – don't wait until you're half done with the recipe)

Place pecans in zipper baggie and let children beat them with the wooden spoon to break into small pieces. Explain that after Jesus was arrested, He was beaten by the Roman soldiers. Read John 19:1-3

Let each child smell the vinegar. Put 1 tsp vinegar into mixing bowl. Explain that when Jesus was thirsty on the cross, He was given vinegar to drink. Read John 19:28-30

Add egg whites to vinegar. Eggs represent life. Explain that Jesus gave His life to give us life. Read John 10:10-11

Sprinkle a little salt into each child's hand. Let them taste it and brush the rest into the bowl. Explain that this represents the salty tears shed by Jesus' followers, and the bitterness of our own sins. Read Luke 23:27

So far, the ingredients are not very appetizing. Add 1 cup sugar. Explain that the sweetest part of the story is that Jesus died because He loves us. He wants us to know and belong to Him. Read Psalm 34:8 and John 3:16

Beat with a mixer on high speed for 12-15 minutes until stiff peaks are formed. Explain that the color white represents the purity in God's eyes of those whose sins have been cleansed by Jesus. Read Isaiah 1:18 and John 3:1-3

Fold in broken nuts. Drop by teaspoons onto wax paper covered cookie sheet. Explain that each mound represents the rocky tomb where Jesus' body was laid. Read Matthew 27:57-60

Put the cookie sheet in the oven, close the door and turn the oven OFF.

Give each child a piece of tape and seal the oven door. Explain that Jesus' tomb was sealed. Read Matthew 27:65-66

GO TO BED! Explain that they may feel sad to leave the cookies in the oven overnight. Jesus' followers were in despair when the tomb was sealed. Read John 16:20 and 22

On Easter morning, open the oven and give everyone a cookie. Notice the cracked surface and take a bite. The cookies are hollow! On the first Easter, Jesus' followers were amazed to find the tomb open and empty. Read Matthew 28:1-9

Garden

This year Greg planted a winter garden with a couple kinds of spinach, a couple kinds of swiss chard, kale and beets. We have been getting a lot of good spinach and chard. Not too sure about the kale. And we haven't harvested any beets yet. But it's been great to have fresh greens any time. Then, on April 3, Greg planted tomatoes. We have A LOT of tomato plants again this year. If you need any tomatoes in a couple months, let me know. I'm sure we'll have plenty to share!

Kyler sitting with his pinwheel with our winter garden

Here are all the new tomato plants Greg planted (I think there are more than 20 even if you can't see them all!)

Table Mountain

On Saturday, April 9, some friends of ours were going to hike around on Table Mountain up in Oroville. So Greg decided to take both the boys with him and go do it also. I was really sick that day so he was going to give me a break from childcare for the day. He left just after noon and didn't get home until around 8:30 that night. I have to tell you that was a really nice, relaxing afternoon by myself. I was able to rest a lot and give my body the down time it needed. And the boys had a wonderful time also.

They drove up there and started hiking. I guess in total they walked more than 6 miles which is pretty amazing for Kyler. Greg carried Caden on his back in the backpack and that worked really well. The kids were slathered in sunscreen and Caden had a hat on to protect his sensitive skin. I guess he was happy as a clam just riding in the backpack. Even when they would stop for a break, he sometimes wanted to remain sitting in it.

I have never been to Table Mountain but I guess there are some pretty steep inclines and some very high drop-offs. Kyler has no fear of any of this, so I was thankful for our friends on the trip who were able to help keep an eye on him and make sure he didn't throw himself over the edge. After all, Greg was less maneuverable with Caden on his back. But he did very well and made it safely up and down without incident. He also did really well walking all that way without too much complaining. Greg said the wildflowers were beautiful also. From the pictures it looks like they had a fun time.

Getting ready to go on a long walk

Look at the gorgeous wildflowers

Kyler scooting down the steep embankment with our friends watching over him carefully

Greg with Caden on his back, peeking out from under his hat!

Caden out of the pack at one of the stops

Kyler sitting very close to the edge!

Greg with Caden leaning very close to the edge :/ Yikes! It was probably good I wasn't there!

Pinwheels

Lately Kyler has been really excited about pinwheels. He had one that he took in the front yard and stuck in the ground. Then he would just sit and watch the wind spin it around. It was really cute. Unfortunately he left it out there and our neighbor's yard people came to mow her lawn and they ended up running over it and shredding it. Kyler was more than devastated by this event and cried a good many tears over it. So, I told him we could go to the store so he could buy another one with his money. A couple days later, we drove to the 99 cent store so he could look for a pinwheel. He found two that he couldn't live without so he bought them both. He won't even leave them outside now, even in the back yard, especially if it is going to rain because he doesn't want them to get wet. It's pretty funny. But he is happy and that's what matters. And, it's always good for him to learn how to take care of his belongings.

Field Trip

On Wednesday, April 6, Kyler's preschool class took a field trip to the Folsom Zoo and Animal Sanctuary. It was a fun trip and I got to bring Caden along as well. The class broke up into small groups of 4 or 5 kids along with their family members and went along with different docents to learn more about the zoo. Kyler's group included three of his favorite friends from school: Ian, Brenden, and Evan. Despite our group being all boys, they did a really good job listening and learning about the various animals at the zoo and animal sanctuary. I learned new information as well. I had no idea that a female peacock is actually called a “peahen” and a baby is called a “peachick.” Who knew??? :)

I think Kyler's favorite part of the trip was when he got to ride the train. (Big shock, right?!) He had gotten his money ready at home so he would be able to pay for his ticket. After the ride was over, he told me he really wished he could have ridden it twice. I told him he hadn't brought enough money to do that. It costs $2 per ride so I asked him if he wanted to ride it twice, how much money would he have needed to bring. Before I could even finish my question, he answered, “$4.” I'm telling you, he is good with numbers!

Overall, he had a great time and enjoyed learning about the animals and playing with his friends. Caden enjoyed it too. He was happy to sit in his stroller most of the time which made it easier on me.

Getting to pet one of the rabbits

It was fun to see the pretty bobcat

A peacock on top of one of the enclosures

The docent was trying to tell the boys something about raccoons

Caden chillin' in the stroller

The boys learning about bear paws

Me and Kyler on the train

Comin' round the bend :)

Forts

It seems like the majority of the time, there are forts built all around my house, especially in the living room. Kyler loves building forts! Sometimes he will leave them up for days until I finally take it down or it falls down. While I love his imagination and creative thinking, there can be a down side. Caden often doesn't see forts the same way as Kyler and will pull them down, much to Kyler's great frustration. And, there are times, when I have no place to sit as I am not allowed to touch any part of one of the blankets used in one of his elaborate creations. But overall, I love the fort building. It offers hours of creative, free play for Kyler (and Caden, when he is cooperating). I guess that's one of the things that happens when you don't allow much TV time. :)

And, apparently the red panda stuffed animal in the background did something very bad to deserve a hanging. ;)

Light Weight

I haven't talked about this much on the blog but Caden is very small. He was on the small side when he was born, although not extremely tiny. But he had a pretty rocky start and didn't get much of a chance to eat or put on any weight early on. He was pretty much the same size at 2 months old as he was the day he was born if that tells you anything. But even at the age of 2, most people are very surprised when I tell them how old he is. He definitely looks more like a 12-month-old than a 27-month-old.

In January of last year when we transitioned Caden to a blenderized diet (BD) of whole foods vs. the canned infant formula the doctor prescribed, there was a lot of concern that he wouldn't be able to gain weight. I proved them wrong very quickly as Caden did phenomenally on BD. All his doctors and therapists the dietitians we were working with all noticed HUGE improvements in his appearance and his growth. He was doing amazing! But he was still small. However, doctors weren't overly concerned as long as he was following his own growth curve and was consistent.

Fast forward to February of this year... Early in February we had our regular 6-month check up with Dr. Van Gundy, Caden's cardiologist. He noticed that Caden hadn't gained much weight or grown much in height since last fall. He was concerned but said he wanted us to continue to monitor it and hopefully it would turn around soon. He wanted us to follow up with him in another 6 weeks or so to see if he was gaining weight.

Then we saw the GI doctor the week after that and she was VERY concerned about not only his weight, but his weight-to-height ratio because that is the real number she was concerned with. He had been 30th percentile for weight-to-height when we saw her in October, but at this visit he was down to 17th percentile and she didn't like that trend. She was worried that if he kept falling off that curve, things could get serious.

So, she recommended we add a zinc supplement to his diet. We are mostly vegan and Caden is entirely vegan and her opinion is that all vegetarians are zinc deficient. She said she has seen kids grow simply by adding zinc into their diet. I was certainly willing to try that because the alternative is they would start pushing us to put him back on formula (not that I would agree to it, but it would be a battle and I didn't really want to have to fight) or add in BeneCalorie or something like that. So we set up a follow up with her for 2 months to see where he was at by then.

In the meantime, we continued to get bi-weekly weight checks at the cardiologist's office to monitor his weight for our intensive feeding therapy program. We knew we needed to see some positive results in order to satisfy doctors so we added a little bit of volume to his tube feedings. And, at the same time, the feeding therapist was able to increase his volume orally so his overall intake and calorie consumption increased.

The GI doc had prescribed a very specific form of zinc and we couldn't find it to save our lives. So we ended up calling her office and asking if another kind would be okay. By the time she approved that and we finally started it, that was only 3 weeks ago and only 1 week before we saw the cardiologist for our follow up.

I have to give you the statistics here:
Weight on 2/8/11: 22 lb, 0 oz
Weight on 3/1/11: 22 lb, 12 oz
Weight on 3/22/11: 22 lb, 9 oz
Started zinc on 3/22/11
Weight on 3/31/11 (9 days later!): 24 lb, 3 oz!!!

Is it possible that after taking zinc for only 1 week that his weight would increase by over a pound and a half??? Or is it pure coincidence? After all, we made the other volume/calorie increases much earlier and he had only gained a net total of 9 oz in 7 weeks! Then in 1 week, he gains that much!!! It's crazy but I'm thrilled.

I love this pic of Caden and Dr. Van Gundy looking at each other. So sweet!


When the cardiologist saw the weight, he basically said he wasn't concerned anymore as Caden was back on the growth curve (6th percentile for weight). :) And if he maintained that he would be fine with it.

We just had our follow-up with the GI doc this week and she was thrilled to say the least! She couldn't believe how much better he was doing. His weight-to-height ratio is back up to 39th percentile and she is really happy about that.

Yay, no more doctors breathing down our necks. But if you could all keep praying for Caden to continue to gain weight and do well that would be great. The hard part right now is if we have to maintain or even increase the amount of food he gets via his tube, he will not be interested in eating more orally and we will never get him off the g-tube. It feels like we are stuck in a catch 22 situation and can't win. We have to get him to gain weight and currently that means he has to have both forms of meals. For now, things are good and for that I am praising God.