The Blessing of Brighton!

Wow, Blessings, so much gratitude and abundance.
Our lives are so full of good and wonderful moments this season!

One blessing we have with Cole is that he gets a nurse to come and "play" with him a couple times a month. His respite care nurses are amazing. Luz and Lydia... This gives me time to spend doing something special with Brighton.

Last week I picked Bright up from school and took him on a special, secret date. We went to the Irvine Spectrum and saw a double feature!! Disney's BOLT in 3-D (super cool!) and IMAX Madagascar 2 (Way Awesome)! (Direct quotes from Bright.) We had a really great night together.

Brighton is doing so well. Since April, when we were told that he has Autism with Sensory Processing challenges, we have begun parenting him very differently. He is a new kid. 90% of the time we are able to avoid the crazies. And when we can't avoid them, at least now we know what is causing them, and we are so much better equipped to handle them. Brighton is handling himself so much better.

There were 6 issues that I went to my pediatrician about.
1. Sensory...
Too loud! My drink is too cold! The light is burning my eyes!

2. Potty Training 5 years old and no closer now than we were 3 years ago.

3. Toes, digging so hard and obsessively that it bleeds, and he can't "snap out of " the trance. Fixated on the toes.

4. Transitions. Even if we are going from boring nothing to Disneyland. If I forget to " warn" him, he freaks out.

5. Aggressive Outbursts... normal sweet kid 90% of the time... then all of a sudden, crazy takes over his little body. It's like he can't handle his emotions.

6. Eating... There were seriously only five foods he would eat regularly.
Waffles with peanut butter and whip cream
Pirates booty
Peanut Butter Captain Crunch Cereal
Gummies
Celeste frozen microwave pepperoni pizza.
Everything else was... It's wet, yucky, there's stuff on it.
And no matter how hungry he would get, it did not matter. He just would not eat. It was like he physically could not get it down.

Now we realize there is just a short circuit in his brain. And we are learning how to re-route his thought processes sot hat he can accommodate regular life in his wiring... Life gets easier by the day!

He eats almost like any other kid now. Every once in a while he will still have to bye bye (spit out) a mouth full of food. But if you look at him in June and compare it to now, it is a million, trillion times better.

Learning what the problem is makes all the difference in the world.

We are good.

Hello all,
We are home from the hospital and doing well. The surgery went really well. However, part of the procedure was an endoscopy, where they video'ed his insides to look around and take a biopsy. During this they noticed that he has a hernia where his esophagus and his stomach connect. He will need surgery again in the near future. This is something that the GI team there today could not do themselves. He needs a specialist surgeon to do what is called a Fundoplication. I think that will be scheduled for about a month from now.

The gave him some crazy drugs and he was hilarious!!!



His head was wobbley, and his legs were like jello. He kept laughing so hard he got the hiccups and squeeked for about half an hour.




When he wakes up and sees the iv in his hand, he is like an ape going crazy. He hates it! I think it scares him more than anything else. Because of this and other surgery and medical tapes being placed on him, he HATES stickers. The grocery clerks always try to give him stickers (like cute cartoon stickers) and he freaks out. Chronically ill children DO NOT LIKE stickers!




They thought he was so cute. (Of course he is!) So the nurses gave him a present. A dump truck! He was very proud.

BEFORE:
Mic Key Button for the G-Tube.

AFTER: Jejunostomy
The food will go directly into his small intestine. (Jejunum)
The tube is a lot longer, and does not have the nice, easy close off port. The g-tube was much easier and user friendly. This new one will take some getting used to. It is really bad if it gets pulled out... ER and another surgery. So we will just have to learn to be really careful.

Update on Cole

This is Charise's sister Mitzi here. Char was going to post something but it appears that she may have not had time before her KAM show this evening. I thought I would just give you all a quick update on little Cole and she can fill in the blanks when she has time.

Cole's surgery went very well today. He was released and free to go home shortly after the surgery. She said they gave him a medicine to calm him and she said that was her favorite part of the day (other then him waking up w/o any complications.) She said he was quite funny and loopy on this medicine. I guess he kept saying "I funny mom!" and laughing at himself. We are happy that things went so well today. He is at home recouperating w/ Grammy while Char and Bill are at a KAM show. (No, the photo above is not from tonight.)

However...there was one thing. While they were in there today, they found a hernia that is (from what I understand) in-between his esophogus and stomach. They said this is why he is throwing up so much. It explains a lot BUT he will have to undergo yet ANOTHER surgery and this one much more evasive and painful. This surgery is one that he will have to stay in the hospital for a few days. When this gets scheduled, we will let you all know.

But for now, know that Cole is doing well from today's surgery and he is such a joy in all of our lives. We love you baby Cole!

Love, Aunt Mit

A double baby shower for my sisters!

Announcing the celebration of Two New Cousins!


Dancing and twirling, holding hands up above,

Coming down to a family so ready to love.

Our mothers, two sisters, forever best friends,

And now this new journey they’ll share to the end.

For eternity we’ve known, our family is forever…

The secrets we will share, the laughter leaves us never.

Two little cousins, coming down to play.

When a cousin’s coming over, it’s the best kind of a day.

Waiting, praying hoping. So excited to see.

When will my cousin get here? Which cousin will it be?

Little people and legos, building a backyard fort,

Digging in the sand or any kind of sport.

Giggles, screams and laughter, forever having fun,

Knowing that in your eyes, I’m always number one!

As long as we’re together, the day will just fly by,

At night when saying prayers, I’ll think of you and cry.

“Oh mama, when will they come again, I can hardly wait.

Please call them before I go to sleep… We need to choose a date.”

And so my favorite cousins, please know within my heart,

You are a part of who I am, and have been from the start.

We were able to have a really fun baby shower for my little sisters Lani and Tiffany while they were in town for the Thanksgiving holiday.

I wanted a poem like Grandma Bodell always used to write capturing how excited those two little cousins must be getting ready to come down to earth together! So above was my attempt. I included it in the invitations along with the cute picture at the top of both couples graduating together from last year. They were very cute invites if I do say so myself!

And then I had seen my cute girlfriends had done a darling garland for Piper, and I wanted to do one for both sisters. Here they are... Very fun to make!



Sue and Krissie Ward had amazing food for the dinner. They had yummy salad and pizza from BJ Chicago and it was so good. And then they had fantastic Trader Joe's Chips and Dips and Delicious Target sweet Moose Much Popcorn treats. The food was to die for good!!



Karen Hill did the party favors and they were adorable!!! She had some really neat ideas. Everyone got to take home a baby pacifier necklace, Bath and Body Works hand gels in adorable baby gift bags and See's Lollipops with Baby stickers on them. It was such a fun treat!

We are off to the hospital!

Hello friends and family,
We are off tot he hospital. My little sister Mitzi will update you all here on our blog.
Thank you for all your love and prayers!
Charise, Bille, Brighton and Cole

Cole the rock star!

Ok, so this is Cole's first season in Kids Are Music and HE LOVES IT!!!
He is a total mic hog, and sings his little heart out.

He will usually do his actions really well, but at Mission San Juan Capistrano last Saturday night, for the first 5 songs of the show he kept going to the front solo mics. So we had to keep taking him back to his spot on the risers. He did not like being put back on the risers. Here he is being mad.
The audience laughed and cheered and thought he was great. When it was finally his turn to come forward for Nuttin For Christmas the crowd went wild! I video'ed from the back. I don't know if you can hear it, but if you listen closely you will hear his screaming the words for Nuttin for Christmas! You can also kind of hear the crowd... Loving him!!

As we were walking around the rest of the night, people kept stopping us and telling us how much they loved him. (And of course the rest of the show... but he really was a hit.)

Glad Tidings of Great Joy!

Happy Holidays!
Our family is very happy this holiday season. We have so much to be thankful for.

Brighton came home from school today and had learned this new song. I know it is because I am his mom, but I think it is the cutest thing ever!



And now a little more about our Cole-ee-oh-lee. We are considering ourselves very blessed. Cole is at home, and is really doing very well considering.

This will be a long post, but I will try to condense it as much as possible.

Last week, on Monday, the doctors gave us a choice of bringing him in to the hospital that day to be admitted for a few weeks, or scheduling a surgery for this week. He is not keeping enough food down to sustain nourishment and life. Well, I have lived at the hospital for weeks on end in the past, and it is not fun at all. So our little guy will be having another surgery this week. On Wednesday morning he will be admitted to CHOC Hospital for an 8:00am surgery. They will do a J-Tube and an endoscopy. These are not major surgeries... He should be fine. They will only keep him overnight if there are any complications.

Long story short... Cole's lungs are his Achilles heel. He has chronic lung disease. Apparently that is very serious. I asked the doctor this week why Cole was having such a hard time. The doctor looked at me like I was an idiot (but in a nice way) and said basically... duhhh... he has chronic lung disease. Basically he was saying, You should be thankful your little boy is walking and breathing without oxygen. He is a very sick little guy who happens to be a major miracle that none of us even understand. Quit your whining and realize that he is one of the biggest blessings we have seen with this kind of expected outlook. Didn't we tell you that he would be on oxygen full time until he was 7 or 8 years old? Didn't we tell you that he might never walk on his own? Yes, your little boy is sick. But amazingly enough, he is defying all odds.

Wow... put me in my place. (Thank you Heavenly Father for all of your wonderful blessings in this little boy's life!!)

Basically, your lungs are connected to every part of your body. Cole has terrible skin problems... because of his lung damage.

He can't get enough calories, because his lungs work so hard that he burns 3 times the normal amount of calories every day. They often tell us, Imagine if you ran a marathon EVERY DAY of your life. How many extra calories would you need to survive? So this is why he has the g-tube and backpack.

Any germs that come around, Cole gets and keeps. So a cold that I get sick with for a couple of days can easily put Cole in the hospital. Most of his doctors would very very happy having Cole be a "bubble boy". They advise us strongly to keep him away from anyone who is sick, or interestingly enough, anyone who smokes. Apparently the smoke from someone's clothes can completely shut down his entire system.

When Cole coughs, he throws up. When he runs (Which he does a lot!!!!) he throws up. When he cries hard, he throws up. When he is angry at you (2 year old tantrums) he throws up. The endoscopy that they are doing on Wednesday is to see what damage has been done so far, and to help determine future courses of action.

As you know, Cole's vocal chords are severely damaged. The constant throwing up is beginning to eat away at his esophagus and vocal chords. This can not be allowed to happen. What he has now is a G-tube. It puts the formula directly into his stomach. A J-tube is a tube that goes into his small intestine. The formula will bypass the stomach altogether. The pro of this procedure is that he will not be able to throw it up nearly as often. The con is that you really need to have your stomach help digest your food. Having the formula go straight into the small intestine can be much more painful, and cause more problems... We are waiting to weigh the pros and cons once we see how this procedure affects Cole's life. It will be an interesting few months.

(I know dad, more talk about throw up than you ever wanted to be a part of. Believe me... it is NOT my greatest wish to discuss throw up all day either!)

Thank you to all the friends who have offered to help with meals, Brighton, church callings and everything else. Your love and support mean the world to us. We especially thank all those who have kept Cole in their thoughts and prayers.

So I always like to have a picture to make the blog posts more fun. What can I show for this post? Well, this video is not as fun to watch, but it gets the message across. Don't say I didn't warn you!


Cole is crazy active. We are doing everything we can to keep him in the wagon or stroller to conserve any calories that we can. Brighton is a great help with this. He will hold Cole's hand as we walk around with the stroller, so that Cole feels included. And Bright is great to make the wagon fun, instead of a punishment.

Cole doing the Limbo. No way was he going to miss out on any of the fun!!!
Wagon time at Fashion Island. Very wonderful brothers.


These were taken about 6 hours before the videos of him choking and struggling to breathe in my last post. He was healthy and happy and having a fantastic night! He can go from 100% great to nearly dying from hour to hour it seems. We went from the Kids Are Music show where he did the limbo to the Fashion Island tree lighting. You can kind of see him doing his Nuttin for Christmas on this video link... more to come later.




These boys are the greatest thing in my life. Glad Tidings of Great Joy to you all this holiday season!!!