Little Chatterbox

(Colby brushing daddy's hair)

(Ut ow...road rage at 2 and 1/2)

(Beep...beep...)

(Colby amazed and delighted when he found a leaf!)

Colby may not be walking...but boy is he talking!

His language skills are just taking off. It's so neat to see his personality really starting to come out as he can express himself with words now and at times repeat more than we would like him to. It melts me to hear his little voice call my name or call Tracey. He refers to us as "mommy" and "daddy", but every once in a while, he'll say "Twacy" or "Cots".....Tracey and Scott. He'll be in the car, I'll put Dave Matthews on and he'll say "Yeah daddy! Dave! I like it!". He'll also do his best to mimic some of the song lyrics. If he can't get the words, he'll hum the tune.

He is also becoming a bit of your typical two year old and now has a Time Out spot in the living room. He'll scoot himself over into his time out spot on his own sometimes and start talking to himself. "Colby....time out......let's talk.....no hitting...". After he's been in time out, Tracey will say "OK Colby,let's talk...why are you in time out.....". He puts his own accents and emphasis on different syllables and words sometimes that makes it all the cuter.

He's also doing pretty well with his counting. He can count rather consistently up to 7 now. He's working on his colors and usually does pretty well with Red, Green and Yellow.

His vomiting has mellowed out lately. He'll get sick maybe once every 3 weeks or so and the episodes seem to be a bit shorter than before. For a while it seemed like he was having about one a week. Some of the information we've read states that it can get better as the individual gets older. So that's what we've hoping for.

He is progressing with his walking. He still depends on one of us to put our hands out so he can hold on, but you can feel that he's much more stable, using our hands to correct himself much less often than before. He's also working on cruising around a table or anything else he can stand up next to. He's very unstable and unsure of himself. I think he's very capable of cruising more, but just lacks the confidence to move more freely.

He's due for another CAT scan to see how is ventricles are doing. Just a routine scan to give another benchmark and ensure things are the way they should be, though he shows no signs otherwise.

Colby is now 2 1/2. Birth to three has been seeing him ever since he come home. We now have a visit planned with the local preschool so that they can come and assess him to see if he will qualify to get into their program. I guess a child needs to be delayed in two or more areas. I think the only area that he is delayed is his gross motor skills as he's not walking. But i don't know enough about "normal" 2 1/2 behavior to really understand where he is. It's an odd situation because no parent wishes that their child has delays and needs special attention. But in Colby's case, we want him to have as much support, stimulation and care that he can get. So we really hope he gets into this program as it's right in the elementary school in town and has a great reputation. I guess they will come out in a couple weeks, take a look at him and I guess this will then determine if he'll qualify or not. We'll just have to wait and see.

He's not potty trained yet, though he'll tell us if he's going to the bathroom. We'll hear him tell us "I poopin" or "doin' pee-pee". So we'll need to tend to that pretty soon.

So I guess that's all the good news for now. We change the clocks this coming weekend and look forward to bringing him outside more. The cold and flu season will soon be behind us and we count our blessings that we made it through another winter relatively well.

I'll so what I can to try to take some video of him talking and put it up here before too long.

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!