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!!!