Saturday, December 26, 2009

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.

Monday, October 5, 2009

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.

Thursday, September 24, 2009

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.

Thursday, August 27, 2009

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!

Wednesday, August 26, 2009

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.

Tuesday, August 25, 2009

Familiar places

Two days before Colby's second birthday and we find ourselves camping out in a hospital room next to Colby. A bit of deja vu that we would really prefer not to experience.
Our little guy isn't doing very well. He started vomiting Saturday. His vomiting and lethargy have gotten progressively worse. We came to the ER last night to have them look at his shunt. A CAT scan of his head showed that his ventricles were not enlarged. That seemed to be a good thing. They said there were no obvious signs of anything else so they sent him home around 11:30pm last night without any real answers. This morning Tracey and I woke around 3:30am to the sound of Colby crying. He continued to throw up and wasn't very responsive. Tracey called his doctor who asked her to bring him in early this morning. We then got admitted to the hospital where they continue to run tests which thus far, have provided few answers.
The neurosurgeon doesn't believe it's his shunt because his ventricles aren't enlarged. However, Colby's lethargy and non-responsiveness mimic his condition from the last two times his shunt failed. He has no fever, no appetite. As the day has gone on, he has simply become more and more "out of it". For the past 9 hour or so, he just lies in his bed or in our arms, moving only to cry, vomit or thrash about as if in pain. Then as quickly as he starts, he stops and drifts off, limp in our arms or quiet in his bed.
....I just got back from bringing Colby to another CAT scan. The doctor said that clinically, he's showing signs of increased pressure on the brain. The only way to positively show whether or not this is happening is another CAT scan and compare it to last night I'm not thrilled about the idea of subjecting him to more radiation, but what are our choices? It will take a couple hours to show the results of this latest scan.
The doctors and nurses seem to be at a loss....the X-ray of his belly came show no signs of any twisted intestines or other obstructions. No no thoughts of an infection in his shunt or in his belly. And no enlarged ventricles. Just a little boy who can't keep anything down and who becomes more and more lethargic and seemingly more and more in pain as time ticks on.
In many of his previous hospital visits, tests would often point towards a "problem". A plan was devised and we'd tackle the issue. This time things are different. Some of Colby's symptoms are the same, but we can't seem to get any rest results to send us down one path or another. It's frustrating to see your child there, obviously sick and in pain...yet not really able to help them.
We've spent much more time in this hospital than we every wanted to. It's strangely familiar being back in this room....a metal crib with wires snaking their way over the bars. The muted beeping of alarms going off in other rooms on the floor, the dim light on in the corner of the room shining down on his empty stroller.
Tracey and I have shifted into "Colby in the hospital" mode. Taking shifts, ensuring that the other is taking care of them self. Tracey stayed with him last night in the ER, early this morning at home and all day today.
I don't know that I'll sleep much tonight. So I'll update the blog as I get more information.

Sunday, August 23, 2009

Colby and Avery

( Colby and Hamilton up at camp in Maine)

(....."hug...hug"... Colby will ask for hugs now. So sweet.)

(Neat picture my dad took of Colby paying with the door at camp)

Well, it's been a busy month. Colby is nearing his second birthday. He seems to learn new words every day. I love to hear him call "Dadda!!!!" when I come into the room. Or to hear him communicate what he wants or is interested in. He's learned the word "Help" to mean if he needs help with something. It comes out more like "ewwp" or sometimes like "uwwp". But we know what he means.

He's gotten pretty good at repeating what he hears. Mostly just one word at a time. So we need to be a bit cautious about what is said around him.

He's also finally gotten pretty good at sitting up once he's lying down. It took quite a while, but he'll often push himself up if he either falls over or wakes up in his crib. If he wakes up in his crib and pushes himself up, he'll scoot around and explore his bed as best he can. The other day we hear him crying from him room and heard a high pitched "Hewwwwp....Hewwwppp!!!!" Tracey found him lying with his back against the side of the crib and his arm between the rails. So apparently he got his hand out between the rails and with that hand out of action, he couldn't push himself up. So...he called for "hewp".

His fine motor skills are great. He's very good at manipulating things, opening or turning objects. He's finally mastered drinking from one of his sippy cups with a straw. We'll put water in the cup and he'll ask for "Wadaahhhh".

I think back a lot either to before we were pregnant and dreaming of what it would be like to have children. Or I think of our time spend on bed rest, then in the NICU. Two years ago tonight, Tracey and I were going on 5 weeks on bed rest in the hospital. She was still pregnant with the twins. We'd sit up, watch moving on the laptop, talk about our future, about how best to get through the situation we found ourselves in. Never could we imagine that in just four days, our years of trying, waiting...would soon end and we would meet Colby and Avery. But here we are, getting ready to celebrate Colby's 2nd birthday. I find myself listening to Colby talk, watch him sit up, play, laugh...and it makes me so happy that my son is doing so well. I always dreamt of having a family. Though my vision was to easily get pregnant, to go through a "normal" pregnancy, then deal with the "normal" development of our children. Here we are, a rather non-traditional past 7 years as far as raising a family goes (5 trying to get pregnant and 2 since Colby and Avery were born). But it feels as "normal" as I would have every imagined it. It's interesting how life does life sometimes sends you down paths you never imagined...yet...if you make the best of can't image them any other way.

And at times, I see things in Colby's life that touch me. The ways strangers will impact us....or the ways Colby will impact strangers. The last two years of ups and downs and to see him doing so well today. Or certain things that happen in his life that touch me deep inside.

Colby goes to a daycare two days a week now. There are quite a few kids there. They're separated in different rooms based on their age. I'm not sure how many kids are in Colby's room. Most of the other kids in the room are walking, but Colby doesn't yet he does his best to get the toys and play with the other kids. Obviously the adults in the room help him. But the daycare director told us that there's a girl in Colby's room that has really taken a liking to him. She's about his age. She'll will bring him toys. She'll play with him. And her name is Avery. Be it what it may, but it makes me feel good inside.

Tuesday, August 4, 2009

Our growing boy

"Colby listening intently to Liz."
I know that's the face he makes when he says "Peeeeaaassssssssseeeeeeee" (Please)

Mmmmmm, watermellon!!!

See my new "cawwwww!!"

Colby listening to momma the other day when we went out to dinner.

Here are some recent pictures of our boy. He's changing from a baby to a little boy lately. At least for me, it's his ability to start to express himself with simply words and the fact that's he's more independent with his scooting around the room on his butt.
In just a couple more weeks, our little guy will be 2!!!! Amazing how time flies!
We continue to feel soooooooooooooo thankful for his progress. Thinking back to all the days in the NICU, all the things we read and heard about a grade 3 brain bleed and hydrocephalus, ROP, G-tubes, C.P., think of all that could have happened, we are just so thankful that our little guy is doing so well!

He continues to add onto his vocabulary. Still one word at a time for the most part.

We visted the NICU the other day. It's great to see the people who played such an important role in our lives.

Friday, July 17, 2009

Trip to Cape, July 2009

Pictures from a trip to the Cape last week.

Tuesday, July 7, 2009

Watch out ladies....

Here comes the Colbster!

Tracey brought Colby to a Jamboree last week with Liz and her daughter Caitlin. He loves music and seeing other kids. You can see him dancing with his arms, scooching around on his butt and having fun with some girls that came over to see him.

Monday, June 29, 2009

Colby vs the flu

The last week or so has been a long one. Colby started throwing up last Sunday. Because he has a shunt in his head, whenever he starts throwing up, has a fever, gets lethargic, we need to first rule out that it's not his shunt. It's hard because those are all the signs of the common flu, which kids get. But with him, we first need to ensure that all is well with his head. So, off to the ER we went Sunday evening. Long story short, turned out to just be the flu. It put our little guy out for a couple days. Then it turned into a nasty cough. But now, he's back to his happy little self.

He continues to expand his vocabulary, often trying to repeat what he hears. I love hearing is little voice babble or try to put words together!

Friday, June 19, 2009

Colby and Hamilton Playing Ball

Here's our talkative little boy. He calls Hamilton "Good Boy".

Sunday, June 14, 2009

Finally, some videos

Colby trying to sing "Row Row Row your Boat" with momma.

And Colby laughing with momma.

Friday, May 15, 2009

Quick pics

Colby is doing GREAT! He, my dad and came up to camp for the weekend. Great to spend time, just the Reed boys.
Video to follow soon.