Pictures from Christmas

Colby's first two Christmases were spent in the hospital. It took three tries, but Colby's third Christmas was spent at home with family.

We started introducing the idea of Santa a couple months ago and he got to the point that he would recognize Santa's picture or say "Santa....coming.....ho, ho, ho". He doesn't quite get the concept of presents yet, but he still enjoyed his gifts once they were unwrapped.

Since the last update, Colby's vocabulary and verbal skills have continued to improve. He's a little chatterbox, repeating everything we say and coming up with some words from TV or other people. He's getting to the point that he'll say something and Tracey or I will ask "Did you teach him that?".

It's interesting because we will give him a toy, a car for example and say "drive". He will take the care and say "I driving, I driving". Or he got a toy cutting board with a fake knife and some plastic vegetables that break apart when you push the knife through them. I gave him the knife and said "Go ahead, cut them". He took the knife and said "I cutting...I cutting".

His biggest hurdle continues to be standing/walking. Though he continues to make slow, steady progress. He readily asks to walk. He need some help getting to his feet, but once standing, his little legs start stepping forward, at times without any thought of the position his upper body is in. Because of the way he sits on the floor (both legs in front of him,almost indian style with the soles of his feet facing each other), it makes it very hard for him to get up from the floor. He would need to rely on his arms to pull himself up and he just doesn't have the strength in his arms to do so yet. He got a play table for Christmas that's just the right height for him to grab on and pull himself up. So with some work, we're hoping this will really help him.

Tracey and I were talking the other day. We said that, among other things, next Christmas will bring Colby, 3 years old by then, probably running around the house, getting into everything. That's a problem we look forward to having.

Colby and Daddy walking

It's taken a long time, but Colby is finally asking us to walk. We'll help him up and hold his hands. His little legs get going and off he goes.

CVS, more than a drugstore

For the past couple months, Colby has been vomiting. At first it would be once a week, if that. Gradually, it become more frequent, sometimes 2 or 3 times a week. The fact that he was vomiting didn't alarm us. Our first thought was to make sure his shunt was working properly. And in each case, it was. The alarming part of these episodes was that after vomiting, Colby becomes extremely tired, sometimes a bit "out of it" and on a couple occasions, totally non-responsive to our trying to wake him. In between episodes, he's totally fine.

After some tests at the hospital and quite a bit of research on the internet, Colby is now being treated for something called Cyclical Vomiting Syndrome (CVS). He fits the description almost word for word: Periods of vomiting, followed by a tired, sometimes semi-conscious state. Often the person needs to lie in a quiet, dark room to make the symptoms subside. Episodes can be accompanied by migraine headaches and severe abdominal pain. Once the symptoms stop, the person often quickly returns to normal. The episodes are usually very predictable. Meaning that the person will feel it coming on and the symptoms will usually be the same each time. Timing between episodes can be as few as a couple days to as long as months. But once a pattern emerges, the person tends to continue to have episodes on or around the same schedule. People generally learn to cope with the syndrome. But for many, the biggest impact on the person's life is simply being sick and in bed during the episodes. A couple of things I read stated that most kids with CVS tend to miss quite a bit of school, with the average being a total of 5 weeks a year.

For Colby, his episodes seem to come every 5-6 days. Usually, it's just a day's worth of vomiting and wanting to be left alone in his crib and then he's back to his normal happy self.

As far as treatment. The cause of the syndrome is not well understood. Therefore, prevention and treatment is more of a trial and error than a clear cut approach to making the person better. Colby is currently taking an antihistamine. I don't fully understand how it works, but in some cases, this can help the symptoms. In about 60% of the cases, the person's symptoms lessen or mostly disappear during the late teenage years.

So, this is Colby's latest challenge. We really thought he was "in the clear". So now the idea of him having to deal with being so uncomfortable and sick just about weekly for possibly years to come is a bit of a blow to us. We're going to watch him closely to see how this med works and if there's no change, we'll keep searching for something that does.

Apart from this, Colby is doing great. He's a little parrot, repeating just about anything you say. He's starting to put a couple words together, but has a vocabulary of well over 100 words. He recognizes places a well. When we pull into our driveway, he'll say "home". When we pull into daycare, he'll say "kids!!" because we always ask him on the days he's going to daycare if he wants to go play with the kids. He's got manners too. If he burps he'll say " 'cuse me". He sings songs too. It's in his own little language, but sometimes if we're in the car, he'll start singing to a song. Or if we're home and he's playing with his guitar, he'll strum it and say "ooooooooooo soooooooooonnnnnnn sunnnnnnnnnnnnnnnnnnn ooooooooooooooooooo". It's too cute.

I've got to get him ready for daycare and myself ready to start my work week. But I wanted to put an update as it's been a while.

Happy 2nd Birthday Colby!

(The birthday sign the nurses made on the door of Colby's hospital room along with a balloon. He anything round..a ball or a balloon. So he kept seeing the balloon through the window on his door and saying "Ba-oon! BA-OON!!")

Colby finally came home late this afternoon. He's back to his usual self, talking up a storm, laughing a lot and scooting around the floor.

When I went into the hospital this morning, a large "Happy Birthday" sign was hung on Colby's door along with a balloon. Everyone on the floor knew it was Colby's B-day so it was nice to have the nurses and doctors make mention of it as they visited him. He would repeat either "Heppy" or "B-dee".

After a long couple days, we didn't really do anything for his birthday this evening. The house was a mess from a couple days of us coming and going, we had to unpack and do laundry from the last couple days...and it felt good just simply to be home and relax!!! Both Tracey and I have to juggle work a bit when he's in the hospital, so tomorrow it's back to the real world and digging out in the office.

So our boy is now the big TWO! This past year has brought so many new things and relatively few complications. With his language progressing as quickly as it is and his mobility improving, I'm looking forward the year ahead of us! Happy second birthday my boy!

Last day of being One

(Colby wondering if he can go home yet.)

(Colby with the best momma in the world!)(Colby has an IV in his left arm. So they wrap it in a towel and then tape to keep him from pulling on the IV.)

Today has brought a lot of good news. Colby woke up this morning much more awake and interactive. As the day progressed, he gradually regained his strength and came back to his normal self....pointing at just about anything round and saying "Ball!!!!", asking for momma and dadda, and even letting the world know what he REALLY felt when the doctors came into the room tonight, he looked up from his toys, saw then and blurted out "Ow no!"!!! haha Yeah, that made us all laugh.

There are no real answers as to what caused Colby to be so sick. The doctors think it might have been a stomach virus, coupled with some constipation, which together increased the pressure in his belly. This caused his shunt to possibly back up a little and put a little more pressure on his brain. Not enough to be picked up on a CAT scan but enough to affect our little boy. Be it as it may, he's doing much better tonight.

Tracey came into the hospital early this morning. We chatted for a bit and it was time to switch shifts. I came home and went to sleep. When I left him he was maybe 50% of his normal self. When I returned, I was greeted by Colby putting his hands outstretched towards me saying "Dadda!!!". That just makes me melt inside.

They want to keep him one more night to gradually get him off the IV and just watch to make sure he stays strong. If all goes well he'll come home early tomorrow, the morning of his second birthday.

I'm going to get some rest. Thanks again for all the thoughts, prayers, e-mails and all. I'm always humbled by the interest so many have expressed in following his journey.

Rise 'n shine

Around 2 am, the doctors thought giving Colby an enema might help his digestive track move along a bit and maybe help with some of his discomfort. That happened around 2:30. Things...well..moved along and for one reason or another, he didn't toss and turn much afterwards until around 5am when another doctor came in to check on him.
For the first time in about a day, he opened his eyes and looked around. He responded to my voice. His eyes followed the doctor as he walked around the room. So it was a pleasant surprise to see him more awake and responsive this morning!
Results continue to come back...all with labels of being "normal".
They are going to tap his shunt this morning as well as start doing tests for less common reasons why he might have been so out of it. Although I'm happy and quite relieved that he's showing signs of imporement, I hope they can in some way find out what caused Colby so much trouble over the last couple days.

I came directly from work yesterday afternoon wearing a button up shirt, dress pants, dress shoes, etc. Tracey went home to get me a change of clothes for the evening. I guess I forgot to mention that I needed flip flops or sneakers. So she came back with PJ bottoms, a couple t-shirts....but nothing for my feet. The cafeteria opens at 6am here in the hospital. And they have Starbucks coffee....thank god! I'll be standing outside the gate, wearing blue PJ bottoms, a t-shirt, hat....and dress shoes.....silently waiting for them to raise the gate to the cafeteria!

No news is...good news?

It's been a busy couple hours. Colby's blood results have come back....all normal. His CAT new scan has been evaluated....all normal. A doctor from his pediatrician came in to check him and besides the way he's acting, he couldn't find anything. Lastly, a surgeon came in to check his abdomen. And, like all the others before her, she said she can't find anything abnormal or anything that would point to a problem.
So the plan is to wait. Wait for more fluids to get into Colby via is IV. Wait for Colby to rest and possibly regain some strength through the night. If by morning nothing changes, the next course of action will be to tap into his shunt and test the fluid for any signs of infection within his cerebral fluid. They will also do an ultrasound of his intestines to see if there's any overlapping of his intestine walls or if any of it has twisted and the X-ray simply didn't pick it up.
I've made up my little couch-bed thing and am going to try to get an nap before they come in to check on him again.