Colby and Avery's Story

Forever changing....but still the same.

2011-12-20T20:37:00.013-05:00

(Colby's Preschool picture. Fall 2011)

(Don't mess with the masked avenger! Thank you Aunt B for the cape and mask!)

(Colby at his 4th birthday party getting ready blow out his candles.)

(Colby in daddy's new apartment decorating the Christmas tree)

(Colby and grandpa Jud "doing cheers")

(Colby and Grandma Carole at grandma's going away party)

As with most things in life....the one constant is change.
The last year has brought many changes in Colby's life. After 15 years of being together, Tracey and I have decided to get a divorce. We are very amicable and remain very good friends. Colby is doing fine with the transition. A couple months ago, I went over Tracey's one day to pick him up, Tracey and I were talking when Colby came into the living room. He looked at me and said "Dad, no, you need to go home. You're not married any more!" Haha. Yup, he says what's on him mind!
In the beginning, he asked a couple questions about why he had two houses now. Our answer were and continue to be simply that mom and dad have gotten a divorce, but we still care about him and we're still a family. He seems very comfortable and content with those answers.
My apartment is on the second floor. So Colby now has 13 stairs (trust me...we count them just about each and every time we come home! LOL) that he's had to go up for months now and this has been a blessing in disguise. It's helped his little legs get stronger. He's still a little small for his age so for a while, the average step was above his knee. He's seemed to have hit a little growth spurt. That coupled with months of practice and he's now getting up and down the stairs much more quickly. As in our years together, Tracey and I continue to be very lucky in the way we work together with Colby. I'm very thankful for that.

Colby's CVS was getting better for most of the summer. He went months without any episodes. But the last couple months have brought some changes. He has been having more frequent episodes, sometimes more than one a week. He is old enough now to recognize that he's not feeling well and will often ask to lay down in his bed. A couple times he's slipped quietly out of the room, crawled into his bed and pulled the sheets over his head. When asked what he's doing, he replies "I'm not feeling well daddy. I feel kinda sick." 20 minutes later, he's back out, playing with his toys, singing and back to his old self.
As I write this entry, I look down to see him on his couch. He had an episode again tonight and actually threw up. He gets upset sometimes when he vomits. I think he's just frustrated with it and getting sick isn't fun for anyone. I asked him why he was crying and he said " It's 'cause I throwed up all over my shirt and I really like this shirt!" That's a typical Colby kind of answer.
His episodes now are quick and he seems to bounce back sometimes within just minutes. When he first started having them years ago, he would be out cold after the episode, unable to be woken and would then sleep for the remainder of the day. Looking back at those times.....well...this isn't too bad.
We have an appointment in a couple weeks to have him checked out again. Sometimes the increased frequency of the episodes has been an indicator that his shunt isn't working quiet right. I'm not sure this is the case. In the past when his shunt malfunctions, he goes downhill quickly. It may just be that he needs to increase his medicine. I'll hope that that's the answer.

Grandma Carole (my mom) and Grandpa Ron (her husband) have been a very big and important part of Colby's life. They recently moved to South Carolina. Like with many adjustments in Colby's life, he asks questions, processes things...but takes it all in stride. Colby and I are looking forward to our first plane ride in a couple months when we go down to see grandma Carole and grandpa Ron! Grandpa Jud (my dad) and Grandma Vikki (his wife) continue to play important roles in Colby's life and we're so very thankful for all four grandparents!

We have long wondered about Colby's depth perception. Whenever he would come to a change in color on the ground, or a defined line....like a door jam or a large crack in the side walk, he would stop, look to hold onto something and very carefully explore the ground in front of him. When playing catch, he seems to have no concept of when to close his hands or when to move his arms to get the approaching ball. It inevitably passes his hands and whacks him. Again, in typical Colby fashion, he usually remarks "ooops....that's OK dad. I'll get it!". He's bend down, get the ball, toss it back and then put out his arms ready to give it another try.
So we brought him to an occupational optometrist where he failed all of the depth perception tests. It wasn't much of a surprise and in some ways, more of a relief that he had a direction to take to address this latest challenge. He's been to an therapist once so far where he's been given a patch to wear a couple minutes each night, alternating eyes. The doctors and therapists seem to think that this is something Colby will be able to overcome in time.

Lastly, Colby will most likely repeat preschool again next year. Last year's experience was wonderful. But he was still playing a lot of catch up, had just started walking and the whole school experience was new. Because of his history, he got into preschool a year early. This year he is doing wonderfully. But his teachers discussed with us the option to have him repeat it again and allow his motor skills to continue to develop, allow him to grow and get stronger before he enters kindergarten. Given the wonderful progress he's made in the past two years, Tracey and I felt that it would be a good option to pursue.

Change is something that you cannot avoid. And as with many things, how you deal with change will affect the outcome and dictate whether the change resulted in something positive or not. Colby has been through a lot in his short life. In some ways, his journey has aged him beyond his years...making him stronger and more insightful than some other four year olds. He was presented with challenges that, based on statistics, might point to a rather bleak outcome. Tracey and I vowed four years ago to support and empower him to do as much as he possible could in life........ and look at him now, he's a normal little 4 year old......a smart, curious, strong willed, witty, loving little boy. I believe strongly that the people in his life have played such in important role his Colby's outcome. Although some of the recent changes in Colby's life have moved people around a bit and thrown in some new challenges, the support and devotion he gets from his parents, family and friends remain the same. And that's what's most important for him.

"Daddy, I'm a big boy now...cause I'm four!"

2011-09-05T12:29:00.010-04:00

(St Patty's day parade in Hartford with Grandma Carol)
(Driving daddy's boat. July 2011)
(At camp with Grandma Vikki and Grandpa Jud. July 2011)
(Fishin' with daddy at camp. July 2011)
(At camp with Grandpa Jud. July 2011)

(Of course....put the dinosaur on top of the lobster....makes complete sense!)

(Helping daddy cook. February 2011)
(Making snowmen with mommy. January 2011)
(Having fun with daddy at camp. July 2011)
(Pushing his running strolling while out for a run with mommy. August 2011)
(He and his friend Kaitlyn at his birthday party)
(Mommy, Kaitlyn and Colby. His 4th birthday party)

Yes, our little boy recently turned four years old. The past 9 months have been very good for Colby. He's had relatively few issues.
He loves his preschool and daycare. He's made some friends there. The kids seem to be drawn to him. Colby tends to be quiet, in the background watching and taking it all in. He'll often play contently by himself. This isn't to say that he's antisocial or doesn't play with other children, but more often than not, he'll start off on his own until he's more comfortable.
He's doing very well with his walking now. He gets around like a champ. He's very flat footed, which seems to cause issues with his balance. We may end up exploring some sort of brace to help correct this while he's still young. Balance and depth perception seem to be his main hurdles at this point. If he comes up to a line in the ground, it's almost as if he isn't sure if it's two levels or not and he'll often stop and slowly test the area beyond the line carefully before he proceeds. We have seen notable progress in his balance. He has inserts for his shoes that help correct his flat feet. It used to be night and day between when he had his shoes on and when he went barefoot or in sandles. His balance was always better with the shoes and the inserts.
Recently, Colby has started to become much better on stairs. He still goes very slowly and at times, needs to rest. But again, we see notable progress there as well.
When it comes to his vocabulary and ability to understand and process things, he's amazing! Friends, family and his teachers often comment on Colby's understanding of things. He often seems to understand much more than your "normal" 3 or 4 year old.
Some people have commented that he's like a little old man...both in what he says and in his mannerisms. LOL And we agree. He makes little grunting sounds sometimes when he gets up or picks something up. His gate is a little unique when he walks sometimes. We think it's cute.
Luckily, we haven't had any issues with his shunt in some time now! That's a wonderful thing! There's always the possibility that he will, at some point, no longer need the shunt. But the only way of knowing is for him to continue without any issues with pressure in his head and then we can only assume that things are working properly. He's very aware of his shunt and calls it his "spout" sometimes. We're not sure where he got this name for it but we chuckle when he refers to his "spout" and rubs the area on his head where it starts down to his belly.
On another positive note, he's Cyclic Vomiting Syndrome (CVS) seems to be getting better...or at least he's going through a very good spell lately. Now I write this blog as he's lying in bed having an episode. But he hasn't had one in over a month and now only throws up once every couple months. Sometimes we can see it in his eyes. He won't eat much and will be quiet. Sometimes he'll break out in a sweat and get restless and eventually fall asleep. But it's better than the spontaneous vomiting and passing out that he had at the beginning of his diagnosis.
Many people continue to ask us if he'll outgrow the CVS. Like his shunt, we just don't know. So we've learned to live with it and make the best of things the way they are. If either of the two issues become a thing of the past...well then things will just be that much better!
So now Colby is four years old! He got into preschool a year early and will repeat the year starting tomorrow morning. He's a happy, vibrant little boy. He continues to be a happy, easy going little boy.

Getting big!

2010-12-01T16:51:00.005-05:00

Our little boy is growing up quickly. He's conquered walking. He'll say he's running, but for now it's a fast walk with his hands held a little ahead of himself. Sometimes he reminds me of a tall stick with something balanced on top. If you let the ball start tilting forward a bit, you need to quickly start moving in that direction to keep the stick under the ball. That's what happens when Colby runs. He likes to live life on the edge and is just of the cusp of letting his body get ahead of his feet. All along, he'll be talking...rambling sometimes about whatever is on his mind. Sometimes it's what happened that day, sometimes it's what mommy or daddy said. Or he'll count, sing a song or just hum a tune as he wanders aimlessly back and forth, down the hallway to his room, spinning around, then back to the living room only to pop his head in the doorway to say "Hey guys, whacha doin'?".
Preschool is going very well. He loves his friends and teachers. He goes from preschool to daycare and rides in a green van. He loves to tell us stories about the green van. We also know if he gets talked to in school because he'll tell on himself. "Mrs M said "Shhhhhhhh Colby....in da wibrawy today." Or "yeah...I cwied today at school." Then, just as quickly as that thought popped into his head, he's off on another story or off he goes on a mission to find his little toy train.
.
He hasn't had that many cyclic vomiting syndrome episodes. He'll go through periods (like a week or two) when he'll have a lot, then he'll go weeks without any or with just a few. We think the episodes are getting a little less severe. There are articles to say that kids can outgrow the syndrome. We hope that's the case.
He's old enough now to get the whole Santa concept and tells us that he needs to tell Santa to bring him toys. We decorated our tree the other day. He saw all the lights light up and he gasped "AWWWWWW!!!!! I see da wites!!!" He's loving the candy canes and is very excited to see if Santa brings him any toys. We'll have to wait and see. : )

Big steps!

2010-07-15T20:39:00.006-04:00

So....what's new? Colby is walking! This video is a bit old now. I'll need to take more video as he's progressing so quickly. He took his first steps a couple weeks ago and hasn't turned back. He's been cruising for quite a while, so we knew it would only be a matter of time until he would be walking. It's amazing to see how quickly he's gaining confidence and strength! He still has trouble if he falls in the middle of a room because the only way he knows how to pull himself up is if he has something to hold onto. But he's working hard on that too. He has a "running" voice, or I should say breath. When we tell him to run, his little legs move a little quicker, but he breaths loudly and quickly, kind of like a dog panting. Then when he gets to wherever he was going, he'll let out a "phewwwwww".

Birth to Three is almost done as Colby turns 3 in a couple weeks. He got into the local preschool for two mornings a week which will be wonderful for him.

Apart from the walking, he continues to expand his vocabulary and develop his personality. He has a little sense of humor going. He's also starting to laugh at certain cartoons he watches which is really cute.

His cyclic vomiting syndrome has gotten better too. He still gets sick a couple times a month. There doesn't seem to be any rhyme or reason to it and his episodes don't last as long and aren't as intense as they used to be.

He's still wearing his glasses, though we've noticed that when he doesn't wear them, his eye isn't turning in as much. His glasses have been sat on, twisted, dropped, had all kinds of food smeared over them and right now seem to be holding together by a thread. So we'll need to set a new eye doctor's appt for him and see what's next.

So that's the scoop. I continue to look back at how far he's come. I just can't wait to see all the new things that he'll surprise us with.

Little Chatterbox

2010-03-09T18:07:00.005-05:00

(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

2009-12-26T12:43:00.006-05:00

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

2009-10-05T07:42:00.002-04:00

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

2009-09-24T07:49:00.004-04:00

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!

2009-08-27T19:22:00.003-04:00

(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

2009-08-26T21:23:00.001-04:00

(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

2009-08-26T05:24:00.001-04:00

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?

2009-08-26T01:35:00.001-04:00

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.

Familiar places

2009-08-25T21:25:00.004-04:00

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 fever....so 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.

Colby and Avery

2009-08-23T21:12:00.008-04:00

( 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 that....how life sometimes sends you down paths you never imagined...yet...if you make the best of things....you 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 crawl....so 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.

Our growing boy

2009-08-04T23:39:00.003-04:00

"Colby listening intently to Liz."

I know that face...it'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., etc....to 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.

Trip to Cape, July 2009

2009-07-17T19:28:00.004-04:00

Pictures from a trip to the Cape last week.

Watch out ladies....

2009-07-07T07:16:00.006-04:00

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.

Colby vs the flu

2009-06-29T06:14:00.004-04:00

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!

Colby and Hamilton Playing Ball

2009-06-19T21:28:00.003-04:00

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

Finally, some videos

2009-06-14T08:02:00.004-04:00

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

And Colby laughing with momma.

Quick pics

2009-05-15T07:40:00.004-04:00

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.

Happy Mother's Day mommy!

2009-05-10T06:56:00.004-04:00

Happy Mother's Day Momma!

From taking care of me when I was in your belly, helping me when I was the in the hospital, taking me to the park, teaching me to talk, helping me learn how to eat with my hands, reading me books, helping me when my teeth hurt, making me laugh when you're silly, snuggling with me on the couch...you're always there for me mommy. Thank you for being such a wonderful mommy! I love you so much!

Love,

Colby

A warm spring day

2009-04-26T06:47:00.003-04:00

The weather here in Connecticut has been beautiful. So Tracey and I got Colby a trailer that attaches to the back of our bikes. We tested it out yesterday on the rails to trails in Farmington. Colby seemed to enjoy it. These are some pics from yesterday.

Apart from that.....just the usual, working with crawling and standing. He's babbling A LOT lately which is just too adorable. I'll need to get some video and post it at some point.

Just some pics...enjoying the spring weather

2009-04-18T21:32:00.003-04:00

Fevers, boogers, teeth and talking

2009-04-12T07:37:00.003-04:00

(Colby and momma out and about at a coffee shop. I love bringing Colby out. It exposes him to new things and gets his mind working. He's very easy going which makes it easier.)

(Me and my boy!)

(We try to include Colby in as much as we can. If we're folding clothes, we'll give him a shirt or something and ask him to "help". If we're making the bed, we'll put him on the bed and do the same. Tracey often puts him in the backpack or bjorn if she's making dinner or working around the house. He's Colby on momma's back as she vacuums. He knows what the backpack and bjorn mean. If he sees you putting either on, he'll get all excited, start babbling, kicking is legs, etc)

(Colby spent over 4 months in the NICU after he was born. Tracey and I were there just about every day. Many families come and left during our stay and we got to know a couple of them. One family, Jess and Rick, had a son Joey. They were right across the room from us and we'd talk from time to time and have kept in touch since leaving the NICU. We finally got the boys together a couple weekends ago. Joey is doing so well! He's crawling about, stands and explores things. I was hoping that seeing another boy crawling and walking around would entice Colby to want to get out off his butt and move about. ....no luck. It was great to see Jess and Rick and to see little Joey doing so well. I think there's a unique bond between parents of micro preemies. People can understand that it's hard, challenging, emotional....and all that goes on by having your plans so abruptly changed. But to have gone through many of the same emotions and challenges provides some unique insight into the journey. So I'm thankful to have kept in touch with Jess and Rick and hope the buys can get together every so often as they get older.

The last picture has Colby a bit upset. He was trying to take off Joey's glasses. I told him "no" and then Joey's big sister wanted to help and told Colby "no no". Well, having another kid tell him "no" was not a very nice thing for the Colbster. So, he was a bit upset. LOL)

(Colby munching on some toast and eggs. It was funny because he wasn't keen on the eggs. So he'd spit them out pretty quickly if he happened to grab some in his hand.)

Our little guy is doing very well. The last couple weeks have brought a couple challenges and some new accomplishments. Colby started having a fever last Tuesday and was throwing up during the night. Our first thought is to watch his shunt. But after a couple calls to his neurosurgeon and a visit to his doctor, all looked fine. It seems now that it's because his molars are coming in. Apparently that's not a very fun thing to have happen!

He's been sneezing, had a runny nose, a cough, etc. We chalked it up as a bit of a cold or possibly a side effect from his teething. But then last night, we went into Whole Foods and he immediately started sneezing. And not a dry sneeze at all. All the fun bubbles, gobbs of slimey...well...you know. And he kept sneezing, his eyes got all puffy. So Tracey and I think it's allergies. Probably to the cut flowers they had in there. He continues to have puffy eyes and is sneezing all kinds of stuff around this morning. So I'm thinking it's allergies to some spring related thing. If it continues, we might ask his doctor if there's anything we can do to help him.

I can't remember if I mentioned this in my last posting, so I'm sorry if this is a repeat. Months ago, we were trying to teach Colby some basic sign language...more....eat, etc. But he wanted nothing to do with it. We could tell via his other body language and his sounds if he was hungry, tired, etc. So we let the sign language go. A couple weeks ago, Tracey was on the couch with Colby sitting next to her. She was eating a snack and looked down at Colby. There he was, looking up at her signing "more". Out of the blue, he started doing it. And now he does it whenever he wants some food or drink. We've been trying to get him to say "more". We're having some success. He'll mumble "mo...". His language continues to progress as well. We tell Hamilton he's a "good boy". Colby has picked up on that and from time to time will mutter "gu bo...gu bo". For a short while, everyone was a baby. If anyone walked into the room, he's get excited and say "Baby!". He still knows his blog is on the computer and loves looking at his pictures and all. When Tracey or I are on the computer, he'll reach for it and say "Baby! Baaaaaaaaby!".

We continue to work on trying to get him to stand or crawl. We're going to see if we can get him into a local physical therapist that's come highly recommended for some extra help. They're booked for the next month so hopefully we can arrange something for May.

Just milk please

2009-03-26T20:30:00.003-04:00

Wow...about two weeks since the last update. So what's new?....

Well, Colby is off formula and 100% on milk now. He's also taking a multivitamin in his milk but is doing very well with it. Tracey and I are thankful that he's off the formula. It was a bit of a pain to mix....plus it was about $50/week. He continues to eat like a champ, eating pretty much whatever we eat as long as his little front teeth and back gums can chew it.

He's still only a little over 20 pounds. But he was last weighed before he went onto milk and I think that's adding a little weight to him. His hair is finally starting to darken a bit and get a little longer.

As you can see, he's talking a bit more. He was totally into doing that "What does a lion say" and he's respond "rarrrrr", then "what does a snake say " to which, he'd reply "sssssss". But this seems to be old news as he rarely replies to either now. He's moved on to bigger and better things, like "baba" for bottle and "baby". It melts my heart to hear him ask for his bottle when he sees that Tracey or I are preparing it. he'll sit there and just keep saying "bababab baba bababa baba".

He's also got a bit of a dancer in him. Whenever there's any kind of music around, he'll immediately start waiving his arms. He LOVES music. He's just too cute!!!!

We continue to struggle to get him on his belly, to crawl or to stand. It's not that he can't, it's more that he doesn't want to. We have seen an increase in his arm and leg strength. So we'll keep it up and when he's ready, he'll surprise us all and start standing.

That's about the extent of things for now. I'll try not to let another 2 weeks go buy before I post another update.

Doctor's Appointment

2009-03-08T22:05:00.003-04:00

(Colby says "Ma...Ma...come on ma....let me have a turn!")

( I don't know who loves who more....)

Colby is doing fine. Well beyond his little bought with pneumonia now.

Colby had a routine doctors appointment last week. He weighs 20 pounds. Not quite as much as I'd hoped. But he was sick for a good couple days the week prior and wasn't drinking much. That all could have contributed to him not having gained that much weight.

All in all, the doctors were happy with his progress. They asked that we get an x-ray of Colby's hips to see if there's anything that could contribute to him not wanting to bear weight on his legs. He will stand, but only if you put his legs down, lock his knees and prop him up. He'll then "stand" there, until his legs buckle and down he goes. I've noticed that he is gaining strength, little by little.

We've been wondering if we can gradually take him off his formula and put him on regular milk. Given that he hadn't gained that much weight, we thought they'd keep him on the formula. But he's eating solid foods fine. Sometimes seeming to prefer finger food or spoon feed food to the bottle.

They suggested that Birth to Three come every week, not every other week. So we'll need to make that change.

Although Colby isn't crawling, is still small for his age, he's one VERY happy and content little guy! He's so quick to smile or laugh. He LOVES music and will "dance" with his hands in the air, waiving them about to just about any tune that's on TV or on the radio. It's funny because he'll stop whatever he's doing and start waiving his arms around, usually with a smile on his face.

We got a backpack off of E-Bay the other week. Colby seems to enjoy riding along in it. It was a warm weekend here in CT and yesterday we went down to the shore to go on a bald eagle watch. Colby really enjoyed his time outside. It's funny to think about a year ago when he started doing his "eye thing". He'd squint when he got out into the sunlight. Luckily that condition righted itself without any intervention or explanation and hasn't returned since. So it was very nice to have him outside, enjoying the sun and the fresh air. He didn't take his usual nap, but wasn't a bit cranky for the trip.

Wherever we go Colby draws attention. He'll smile and waive at people as they pass by. Many comment on his glasses and how cute he looks. I think some people notice his shunt and wonder it is. I've only had a couple people ask questions. I usually make the attempt to give a simple explanation to what it is. I think it helps people feel more comfortable, ask questions or share their stories at times.

I continue to feel so lucky that Colby is doing so well. I've told so many people that Tracey and I stated we wanted to make something good of an otherwise tough situation and that we'd empower Colby to do all that he's able to. The plan seems to be working. He's a very happy little boy. Delayed....yes. But showing progress in every way possible. And more than anything, he melts my heart with his soft little touch, cute smile and babbling little voice.

Feelin' better

2009-03-01T07:12:00.003-05:00

(Colby loves mirrors. He'll lean forward as if to kiss himself....so vain! LOL Or he'll lean one way or the other to change the angle of the reflection and see other things through the mirror. This picture was taken at the Black Rock Tavern yesterday. He was playing with grandma's mirror. Colby was on Tracey's lap and was looking up at me as I took his picture. )

(Colby with rosy cheeks from his fever. Even when he was cranky, he still had his moments of being happy and smiling)

(Here's momma trying to get some fluids into Colby via a syringe while he was sick.)

(Here's Birth to Three working with Colby on his ball. I have to laugh because it looks as if Colby is totally distracted by the picture...looking over towards mommy, legs lifted up, LOL)

Sometimes it's difficult when you have a child with a shunt. The signs of a shunt infection or malfunction (meaning it's not draining and there's pressure on the brain) are just about the same as when a child has the bug. So when Colby gets sick, we immediately start running down two routes. First, hoping that it's just a "normal" kid's sickness. And then the plan B...contact the neurosurgeon, pack an overnight bag, start monitoring fluid intake, veins on his head, etc in the event it's his shunt.

I think it was Tuesday afternoon, Colby started running a fever and becoming lethargic. He didn't want anything to drink and was very irritable. His fever started going well over 100 degrees, so we called his neurosurgeon. My mom was over and helped keep Colby comfortable and happy. She's great with him. Very long story short, Tracey spent a good 5 hours in the ER where they did X-rays of his chest and other tests to rule out a shunt infection. They sent Colby home at 3am Thursday morning stating it was just the bug. Later in the day on Thursday, the ER called back and said that upon further review, his X-ray showed some fluid in his lungs and said he might be getting pneumonia. So they prescribed an antibiotic and told us to keep a close eye on him. Almost immediately after taking his antibiotic, his condition started to improve. He would eat like a champ, but wouldn't take any fluids. Tracey was worried that Colby would become dehydrated so she patiently kept giving him syringes of pedialyte and Gatorade. At times Colby wasn't thrilled to be taking it, but it worked as Colby kept having wet diapers.

I had planned a bit of a high school reunion for Friday night. Colby's illness started to complicate things and I was wondering if I as going to be able to make it. But by Friday Colby was doing much better so we went ahead with our plans to go back to my home town, drop Colby and Hamilton off at my dads and head out to the reunion. Colby did great....and so did grandma and grandpa, taking good care of him. Even after he started feeling better, he still wanted nothing to do with either his bottle or drinking. However, just this morning he finally took a full bottle of formula like it was nothing. Our normal morning ritual is for me to get up with him in the morning. I'll get a bottle read. As that's heating I start my coffee brewing. Once the bottle is warmed, I go in, get Colby, come into the living room and set him down on his pillow with the bottle. I was psyched to see that he immediately took it from me and started drinking. Maybe it was a bit of the ol' routine that helped. Either way, I'm glad to say that he seems to be back to his happy, babbling self again. He'll stay on the antibiotics for a couple days.

All in all, Colby has been very lucky when it comes to colds or getting the flu. He's now technically 18 months and thus far hasn't had a really bad cold. This was his first bout with the bug. No ear infections or other complications. Sure, he's had more than enough with all his other complications, but we're still happy that he's been lucky with this aspect of his health.

His hair is growing little by little. It's getting long enough and dark enough now to start to help cover his scars and his shunt. Because the area around his shunt was shaved not that long ago, he has areas of longer hair...where it's never been cut, then areas of shorter hair where it has been trimmed for his various operations. You can't really tell though as his hair is so fine.

We've backed off of working with him while he's been sick, but we'll start helping him use his legs and starting to really push him using a sippy cup now that he's feeling better.

Before...and after

2009-02-22T17:10:00.002-05:00

BEFORE we left the house to go to the supermarket. All bundled up, bright eyed, ready to go.
...and AFTER a visit to the supermarket, REI and a coffee shop. Hat's gone, glasses are all torqued and he's out cold.

Hamilton in front of the fireplace with his chin on his duck toy. He's so good. We'll have Colby's toys all over the floor, but he won't touch them. Food that Colby drops on the other hand is fair game!

Look at those teeth!

There's our boy!!!!

Nothing much to report. We continue to help work with Colby on his standing. I'm seeing more progress here than with his crawling. At first, he simply wouldn't support any weight on his legs. His knees would buckle, one leg would go one way, the other goes in the opposite direction.... We'd have to hold his feet on the ground, hold his knees back so they wouldn't buckle, hold his body up as he wouldn't support himself. But now, as long as you get his legs straight, he'll occasionally hold himself up for a couple seconds. So that's a definite improvement!

Starting him young...

2009-02-19T06:57:00.003-05:00

Here's a snapshot of a typical morning..... Mom trying to catch some sleep after working her tail off. Colby and I in the living room, both waking up slowly. Colby either on the floor playing playing with toys or in this case, in his walker nibbling on some Cheerios after taking the better part of his bottle. Dad on the couch, enjoying my morning coffee and watching Bloomberg Television. ...and look at the Colbster....checking out Bloomberg's chart of Crude Oil prices. A little Financial Advisor in the making!

Some more clips

2009-02-17T07:16:00.005-05:00

Here's a couple of clips I took last night. As I've mentioned, we continue to work with Colby to try to get him to crawl or stand. The second clip shows Tracey working with him. Progress is slow, but we'll keep working.

Sunday mornings.....

2009-02-15T07:46:00.007-05:00

(Colby out and about at a chocolate bar, enjoying somethings sweet while listening to some live music that was playing that night.)

(Colby visiting Aunt Brigette and Brian)

(Evan and Colby)

(Colby on mommy's back, trying out the new backpack. His hat is a little big on him, but it served to keep him warm)

(All packed into his new backpack. He couldn't really move around too much in it, but he didn't seem to mind at all.)

(Colby, Daddy and Hamilton all out for a hike)

(Daddy's turn to carry the Colbster)

(Colby and I went over our friend's Dave and Nicki's the other night. Here he's in his PJ's, all bundled up, a little past his bedtime, ready to head home and go to bed.)

(Colby in his flannel PJ's)

...are still my favorite.

Sitting here, enjoying my morning coffee. Colby is in his walker, eating Cheereos, watching Barney. He loves music and gets all excited when the kids sing.

I just can't seem to update this blog regularly now a days. I think life is getting busy. Lately I've felt the best I ever have about Colby's future. I think it's because he's started to mimic some words regularly. You can tell he's really thinking about things when you talk with him and he's babbling away.

One new thing he's into is mirrors. He's figured out that you can look in them at an angle and see new things. So he'll look into a mirror, lean one way, smile...then lean another way...smile again.

Our biggest hurdle continues to be his crawling and walking...or lack there of. We're trying to do exercises with him to get him crawling, but he wants nothing of it. I just figured out last night that I can prop him up in front of me, hold his legs straight with one hand and hold him up with the other. Then he has an exer-saucer that's just the right height to come up to his chest. So I had him playing with the things on the top of that last night and he FINALLY kept his knees locked and supported himself. I was so psyched and wanted to show Tracey, but she's working 3rd shift all this weekend so she was sleeping. Well Colby, guess you're just going to have to do it again today to show mommy. : )

Tracey and I have been wanting to get a backpack carrier to put Colby in. We've been looking on Criagslist and I finally pulled the trigger and got one yesterday. We took Colby for a little hike yesterday and both of us tried it on. We love it! It gives Colby a different perspective than being down in his stroller. It frees up our hands and give us a bit of a workout as well! The pictures below above are from the hike.

We've really been making it a point to have Colby wear his glasses just about all the time and it's making a difference with his right eye being turned in. He really doesn't mind wearing them either anymore. I think he can probably see better with them on so he may understand that it benefits him to keep them on.

I'm not sure how much Colby weighs now. He has a doctors appt in a couple weeks so we'll get an idea then. He's still small for his size, but catching up slowly.

I've been taking videos of Colby here and there. I love documenting his progress. Already I look back and can't believe both how small he was and how far he's come.

Been a while....

2009-01-26T19:16:00.003-05:00

Wow, it's really been a while since I last posted anything and I apologize for that. Things have been very busy for us and I feel that although Colby is progressing, there's no monumental updates.
So...what about the Colbster? Well, he's consistently mimicking certain words. He'll repeat "mama" or "dada". I think he'll say "ball", though that's hit and miss. His new things is making the "ssssssss" sound. If you make that sound he'll laugh and then make it himself. He is one happy little guy. Just content to explore the world, interact with people and his surroundings.
He had his stitches removed from his latest surgery. He didn't cry a bit. Poor guy must be used to being poked and prodded. He still has some scabs on the top of his head, but they are quickly disappearing. We're anxious for his hair to grow in and help hide his latest incisions. Colby's head is a bit misshaped. The back right side is flattened from the prolonged time spent lying on his back. It just so happened that his head was turned to the right. While in the NICU, the opening to his incubator and then his crib was usually to the right of him. So by no body's fault, he had a tendency to keep his head turned to the right. Between that and his hydrocephalus, I think it might just be something that will be with him for his lifetime. He's still young though and I'm hoping that it will change.
He went to the eye doctor the other week. The doctor is a bit concerned that his eye continues to turn in. He suggests that we continue to use the glasses for another month or so. If that doesn't work, then they'll need to patch his good eye. And if that doesn't work....they'll try surgery. So we'll just have to wait and see. We've been trying to keep the glasses on him a lot more. He tolerates them well. It just happens that I didn't have him on during this video...but believe me...we're making him wear them a lot now!
I think Colby is looking more like a toddler than a little baby now. He's really grown a lot. When I look back at old pictures, I can't believe how small he was. I knew no better so to me, I understood he was a bit small.....but I really had no idea.
As I type this entry, Colby is falling asleep in his jumper. It's funny to watch because he'll gently bounce....then gradually go quite. His head is back against the head rest thing. Then he'll catch himself, almost as if to say "Wow...I can't fall asleep yet!" and start babbling and bouncing around.

Another quick video

2009-01-13T20:04:00.003-05:00

Here's another video of the Colbster. He's just blossomed over the past couple weeks. I swear he knows when I have the camera on him because he'll stop talking or act all mellow. But I still got him babbling a bit here.

The more interactive he becomes the more attached I feel. It just melts my heart to see him react to my voice or if I ask "Where's momma" or "where's the doggie" and to see him look around for them. I think any parent can understand this feeling, but given all the question marks that the doctors gave us, it's all the more precious.

Some Quick Pics

2009-01-11T12:53:00.003-05:00

(Colby and mommy having breakfast this morning)

(Colby looking up at his beautiful mommy)

Quick video

2009-01-08T21:12:00.005-05:00

As you can see, Colby is becoming more verbal. He has his "spirts" of babbling...at times screaming. Either way, I think it's all cute! He's got the "d" sound down pat. He'll say da-da-da, but I'm not sure it's meant towards me. However if we say "where's da da" or "daddy", he'll look at me. If we say "where's momma" or "mommy", he'll look towards Tracey. We're pretty sure he understands "dog" as well as he'll look at Hamilton if we say that. So he continues to progress.
Colby is about 16 1/2 months old now. He still doesn't crawl. We continue to work on that and he's become more comfortable being on his belly. But he simply prefers to roll onto his back. He lacks the arm strength to push himself up. When he is on his belly and wants to get something in front of him, his arms and legs will go like crazy and he'll babble up a storm. So we're working on it.
His motor skills continue to improve. He's getting pretty good at manipulating things. He'll pick up small tidbits to eat with his two fingers. He'll transfer small and large items alike from one hand to another with ease.
Colby's right eye continues to turn in, at times pretty badly. We've been having him wear his glasses, but I have to admit we could be better. He's pretty tolerant of it and will wear them for long periods of time now.
As you can see the majority of his bandages on his head have either fallen off or come off with some assistance. He has stitches where his old shunt was and tape to hold his new incision closed. But that's it now.
So that's the scoop. Our little boy is on the slow and steady path to progressing and developing. We continue to have high hopes for our little guy.

Quick update

2009-01-04T20:24:00.004-05:00

(Colby trying to impress the laides by looking tough at Starbucks)("So ladies...how do you take your bottle? Venti....soy....slighly heated...sippy cup? No problem...")("Um...excuse me....I'm on a date with two hot babes and I'd like to place an order before we discuss this very interesting book....apperently about feet")

(Colby and momma)

( My parents and their families have been so helpful. It's awesome to see my boy and my parents bonding. He totally recognizes them when they come into the room. Here's my mom with Colby about a week or so ago.)

(And here's my dad with Colby just yesterday.)

(Colby and I reading a book...both through glasses.)

Our little guy keeping warm by the fire.

Colby has been recovering very well from his latest shunt revisions. His stitches were itching a bit last week, but seem to be much better now. Apart from the tape, stitches and red marks on his head, there are no lasting signs of his latest ordeal.

We have enjoyed our holiday vacation and have gotten some rest. Tracey and I met up with Dave and Tracey, friends we hadn't seen in some years. They have twin girls just about the same age as Colby. We met in a Starbucks and enjoyed catching up and letting the kids do their thing. (see pictures above).

I took some video tonight of Colby babbling and in the next couple days will edit that and post it. But it's been a while since I last posted any updates so I wanted to get some pictures up here.

More to come.....

Silly little boy.....

2008-12-28T10:22:00.002-05:00

These pictures kill me! Especially the middle one. It looks like he was dancing to Madonna's Vogue song or something!

Anyway...Colby's doing well. We had trouble feeding him yesterday. He just didn't want anything to eat. He slept right through the night and woke this morning with one heck of an appetite. So all seems to be back to normal!

We're heading out today as it's a relatively warm day for CT in December and meeting a couple friends for a cup of coffee. We love to bring Colby out and expose him to new things. Now that it's the cold and flu season, we have to be cautious of where he goes and who touches him, but to keep him on our lap and let him look around and see new things is great.

Welcome back home Colby!

2008-12-27T12:06:00.003-05:00

Colby got discharged from the hospital this morning. He and Tracey arrived home around 11 today. He's back to his ol' self again which makes us very happy! We're tired now, more than when we was in the hospital. I think we run on adrenalin then once things slow down, we crash. So Colby just went down for a nap, Tracey and I are going to do the same.

Above are pictures of Colby and his Neurosurgeon, Dr Kanev. He's a great man. You can tell he's the kind of person that truly enjoys what he does. You have a profound impact on people's lives, Dr Kanev. We thank you so much for all you've done for Colby and our family!!!

He's back...

2008-12-26T22:39:00.007-05:00

(Colby's right hand has his IV in it and is taped to a small board to keep it straight. He was putting the tubes in his mouth and chewing on them, so we had to put a sock on his hand to keep him from messing with it. LOL. He tried to play with his toys with both hands but was at a bit of a loss of what to do with his right hand as it wasn't of much use.)

(Colby playing with some toys that Santa brought for him)

("Daddy....can I go home now?")

...to normal! I was thrilled to enter his room tonight and see him much more like his old self. He played, smiled, babbled, drooled....all the normal Colby stuff! It's amazing what a difference a couple hours can make. So Tracey is staying at the hospital with him tonight. I'm home and in need of a good night's sleep. I fully expect Colby to come home mid day tomorrow. Above are a bunch of pictures from tonight.

Thank all of you for your support, comments, e-mails, phone calls...you name it! You can't understand what that means to us to have the support we do. Colby is a lucky boy to have such a great group of people following his journey and supporting him!

Would you like an extra night's stay?

2008-12-26T17:56:00.002-05:00

Once Tracey came into the hospital to stay with Colby, I had every intent of coming home, getting something to eat, lying in bed and updating the blog. Well...I got as far as lying in bed. I was out like a light.
Tracey got into the hospital around noon. I honestly don't recall what time it was. We stayed together in his room for a bit, but I was tired and poor Colby was one unhappy camper. He had another fever and was boarder line miserable. They gave him some more Tylonol and then I headed out to come home and get some rest.
I just woke up and called Tracey. Colby seems to be doing much better. The doctors looked at him and said that it's a toss up. He could come home or they could keep him another night. Given the fact that he started to get better twice only to see him digress, we decided to have him stay and be observed for one more night. He is eating, though I'm not sure how much.
So I'm going to try to wake up a little, feed Hamilton and then head back into the hospital. Whenever I get home I'll have some pictures of our little boy to post. We're hoping that this time tomorrow, we'll all be back home together.

Ups and downs

2008-12-26T11:17:00.004-05:00

Over the past couple hours, Colby has started to digress a bit again. He's becoming very cranky, refuses to eat, feels warm but doens't have a temp. He's just turning miserable again. He'll nap for a couple minutes, then wake up and cry, then fall back asleep. His heart rate has been high, around 140 to 150 ever since he came out of his last surgery. He doesn't really want to be held, but doesn't seem content to be lying in bed either. The nuerosurgeon is in the OR right now but will come up when he's out.

Day 3

2008-12-26T09:41:00.003-05:00

(Colby looking at one of his X-mas presents (thanks Chloe and Caitlin). We tried to have a bit of a Christmas here last night, but Colby was not at all interested in much and Tracey was exhausted)(Here's our boy last night, getting some rest.)

(You can see the tape on the top of his head. Apart from that, there's no signs of his surgery as they didn't need to mess with the drainage tube in his belly)

(And here he is this morning, sitting up and more alert. He loves his Pirate Booty. He's definitely right handed, but with the board on his right hand, he was forced to use his left.)

Last night went pretty well. Colby didn't really cry, more of a moaning and whimpering most of the night. He had a mild fever around 1am and I think his belly was bothering him some. He would take longer naps for about an hour or more a couple times during the night. This morning found him doing a little better, a little livelier. He was playing with some stuffed animals and ate some pirate booty. He continues to whimper a lot and doesn't want anything to do with his bottle. I'm trying to stay quiet and let him rest.

The doctors came in around 8:30 this morning to look at him. They said he looked good and if he can just regain his appetite, he may be able to go home today. They will come back in around mid day to re-evaluate him.

Tracey is on her way into the hospital. She needed to drop Evan off at his dad's. Once she gets in, I'll visit with her for a bit then head home to get some rest.

Nothing too much more to report right now.

Ventricles, hydrocephalus and shunts: 101

2008-12-25T21:46:00.004-05:00

I Googled ventricles and came up with a couple pictures for everyone so that you can better understand what's happening with Colby. The two pictures above are both of the brain and both illustrate the ventricular system. The flow of fluid is essentially from top to bottom. In Colby's case, the third ventricle isn't draining into the forth and thus there's a build up of pressure. This buildup is called Hydrocephalus. His Lateral ventricles are larger than what you see in the pictures above. When his shunt isn't working, the pressure builds, enlarging his ventricles and pushing his brain against his skull. The pressure on the brain causes irritability and vomiting among other things. This is exactly what's happened these past couple weeks.

This picture shows how a shunt is placed to go into the ventricle and allow fluid to drain out the top, down a tube which is placed just under the skin and drain into the belly. The pink or purple thing on the top of the shunt is a valve to allow fluid to drain, but not allow fluid into the brain. In Colby's case, he had a shunt on the left side of his head for the past 10 months and just today, they removed that from his head and placed one on the right side to access that ventricle in hopes that it would allow for better drainage. The shunt still connects to the same tube his old shunt used to then drain down into his belly. I can't really tell what the top of his head looks like as it's all covered in tape.

I hope this helps to explain things a bit.

Premature evaluation?

2008-12-25T20:53:00.005-05:00

(Deja Vu! Here are some pictures from last Christmas. ....could have been the same room even, I don't remember. Our little guy was so....well....little!) These were taken right before he had his third ventricalostomy and right before he came home for the first time.)

(He was so small he swam in the preemie santa suit)

(Momma loving her little boy. ....Love those socks my love!)

Poor Colby hasn't had a good night thus far. He started off doing so well. But he's getting cranky again, putting his hands up on his head and rubbing it. It's so hard because we simply don't know if it's just him being uncomfortable with all he's gone through in the last two days or if it's the pressure starting to build again. We have to wait and see, but it's so hard to watch your child in this condition. We just stay near to him, love him and do what we can to help him through these tough times.

Tracey and Evan came to his room a couple hours ago. We had a make shift Christmas. We tried to show Colby's his presents but he wasn't at all interested, so we let him rest. Poor Tracey is absolutely exhausted. She hasn't slept more than a couple hours in the past couple days and the stress of it all is taking it's toll. I hope she can go home, put as much of this out of her head as possible and get some rest.

Some of the nurses again asked where she was or who was going to stay with Colby tonight. I think some of them may think that we're a bit "different" that one of us will leave for a while. But if this were the first thing Colby went through, I think we'd both be glued to the side of his bed. But it's going on a year and 1/2 now of one issue or another and you learn that you simply can't both be there all the time for a year and 1/2. We need to take shifts, let one person recharge while the other takes care of things.

I'd have to say that I think Tracey and I work so well together, both on normal day to day things as well as situations like this. We've heard of families that are torn apart when faced with issues like this. I can fully understand and will admit that what's gone on over the past year and 1/2 would put stress on the best of relationships. But we continue to support each other, learn together and grow together. In doing so I think it's a way to make something good of an otherwise crappy situation.

I hope that I won't have much more to report tonight. I've turned the lights off in the room and gently rubbed the side of Colby's head and cheek until he fell asleep. Hopefully he'll get some good rest tonight. I'm going to make up my couch/bed and try to nap here and there between the nurse's checkups. I'll continue to post updates as things progress.

Wait long enough....

2008-12-25T18:16:00.002-05:00

Colby's back up in his room and recovering well from his latest surgery. The neurosurgeon went in and looked at the bottom of his brain where he had done a third ventricalostomy exactly one year ago today. A third ventricalsotomy is where they go down through the ventricles (there's three of them, the first is highest, the second is in the middle and the third is the one towards the bottom of the brain.) and cut a small hole through the floor of the third ventricle to allow excess cerebral fluid to drain out of the brain. His third ventricalostomy was unsuccessful last year, though we never knew why, which lead to his shunt placement last February. The surgery today allowed the doctor to go back in endoscopically and view the bottom of Colby's brain. The membrane that they cut the hole through last year had grown over. There is an artery that runs just underneath this area and adds a great deal of risk to any surgery that's done. The doctor said that there was a lot of scar tissue in the area and wasn't comfortable trying to force through the membrane in the event they damaged the artery. So he backed out, placed a cerebral catheter in the right hemisphere of Colby's brain and took out the one that he's had in the left. He then connected the catheter to the tube already in place to drain down just under the skin of the left side of Colby's body and empties down in Colby's belly.
When I first went down to the PICU recovery room, Colby was somewhat alert, but still out of it. As he recovered, he showed us all his stubby-toothed smile and babbled a bit as if to say "That did it!". As we came back up into his room, the anesthesia continued to wear off and he became more and more like his old self. I showed him his pictures on the blog and he chuckled and grabbed at the computer. It felt SOOOOOOO good to see him more like himself. He continues to have bouts of crying, but I have to think that's to be expected. in the last two days, he's had two surgeries on his head, a new hole drilled in his skull, pricks, needles and tubes in just about every arm and leg and hasn't had much good sleep. So he's entitled to be a bit cranky.
I really hope that this is the end of his latest challenge and that in the days to come, he rebounds to his laughing, babbling....drooling self. It just goes to show that you simply need to wait and stick through the toughest of times to be able to enjoy the sweetest of moments.
Tracey has been gone all day, getting some rest and seeing her family for a couple hours. She and Evan are coming in any minute now with some presents and food and we'll have as "normal" of a Christmas as we can.

CAT Scan results & back to the OR

2008-12-25T14:41:00.003-05:00

(This is Colby mid morning)

(A bit later, things look better. Colby was sitting on Tracey's lap, eating some Cheerios. But then he started being more lethargic and ended up starting to vomit again. He threw up what he had eaten and then again on my shoulder as I carried him down for his CAT scan.)

(The hour or so before he went in for surgery, Colby just lied there. I would hold him but he was out of it and seemed to be able to support his own body better if he was lying in bed than slouched in my arms.)

The CAT scan showed that Colby's shunt that they placed yesterday isn't functioning they way it should. It's supposed to be down into his ventricle but continues to ride up back into his brain, thus not allowing any drainage. The doctor says the tube in his brain is not rigid and tends to follow the path of least resistance, so it continues to ride back up into the area that it used to be.

Colby has been progressively uncomfortable as the day progressed and began vomiting again around noon. In the past hour or two he's become just about unresponsive, his heart rate is down and breathing has slowed. The doctors reassure me that it's the pressure on his brain that's causing all of this.

I saw the CAT Scan from yesterday and today and his ventricles are enlarged, though not too badly. At least not compared to last February when he first got his shunt placement.

I just got back from bringing Colby to the OR. They are going to try to go in with a scope and see what happened with his third ventricalsotomy that was done last December. We imagine that the hole is closed and thus not allowing any drainage at the bottom of his brain. If they see that the tissue has closed and that they can access the bottom of Colby's brain without much risk, they will try to put another hole to all allow for drainage. I have to admit that having my son's head operated on in twice in two days...three times in as many weeks pulls at my stomach. Each time they go in there's risk for infection, damage to arteries and brain tissue. You have to have faith in the doctor's skill and experience. Regardless of what they see there, they are going to place a shunt on the right side of his head. It will go in just like the one he has now, but it will cross the top of his head and connect to the drainage tube he currently has. I think they will then remove the shunt he has on his left side.

I really hope this works. Colby is one sick boy right now and we were hoping that yesterday's surgery would get him back on the path to being a happy little boy. If today's surgery fails, I'm not too sure what their next steps will be or what it can mean.

I wasn't sure about posting pictures today. But I feel that this blog should be a representation of Colby's journey and show both the good with the ... well, not so good. I've also looked back on the not so good times and it helps me feel thankful for what we have. ....a wonderful little boy and ow how far he's come. I think it's important to recognize the bad times, not dwell upon them. And use them to help keep things in perspective sometimes. That things can always be worse and to be happy and thankful for all that IS going right.

It's quiet here in Colby's room now. I can hear the dinging of monitors in the neighboring rooms. When Colby's here, his monitors bring back many memories of the NICU. When he's awake we stay with him at his bedside. But as he sleeps, it allows us to do what we need to do to recharge ourselves. I will stay with Colby tonight. Tracey stayed last night and didn't get much sleep. So it's important for her to go home tonight and take care of herself. We've definitely learned that although we need each other's company and support, we're not of much good unless we each take care of ourselves.

I'll continue to post updates as I can.

Another Christmas in the Hospital

2008-12-25T11:29:00.004-05:00

We were hoping Colby simply had the bug, but around 4pm yesterday, he started throwing up again. We called his neurosurgeon and were told to go to the ER. They did a CAT scan and saw that his ventricles were enlarged again, thus meaning that his shunt was malfunctioning again. Tracey and I stayed with Colby in the ER until around 9pm when I left to go home to get some sleep. Colby went into the OR around 11pm. I got a call from Tracey around 11:30 saying things went well. There was a blockage in the tube that goes into his ventricle which prevented it to drain.
When I woke up this morning I called Tracey to see how Colby was doing. He's been through this surgery a couple times now and has come out pretty well each time. But for some reason it's a bit different this time. He's really fussy and crying a lot. He keeps rubbing his head. I had a quick cup of coffee, fed Hamilton and headed into the hospital to relieve Tracey.
The neurosurgeon came in around 10:30 this morning and is ordering another CAT scan to see what's going on. If all looks well, they may just keep an eye on him or even let him come home today. Or, if things don't look well, he'll have to go into surgery again, maybe even putting a shunt on the other side to drain his right ventricle and offer better overall flow.
I can't say this is how we'd like to spend our Christmas. Tracey and I laughed as we left yesterday to come into the hospital and both said "Merry Christmas!". Next year we'll have a wonderful Christmas AT HOME!! We both say that although it's not fun going through this, we couldn't imagine going through it without each other. That's what the holidays should be about...family.

Merry Christmas!

2008-12-24T10:14:00.003-05:00

Merry Christmas everyone! I hope everyone is able to enjoy the time with their families, reflect upon the memories of this past year and look forward to the year to come.
Life never seems to go the way you planned..... Tracey and I have really been running on empty lately. It's the holiday season and all that goes with that. I'm burnt from the past couple months at work. Just two weeks ago Colby's shunt malfunctioned. We just need a break and to get away. We had planned to see my family tonight. Then come back home and host Tracey's family tomorrow. Then Friday we were headed up to Maine to get a couple days of R&R. I've planned to take a little over a week off from work to recharge and rediscover a balance in life. We were both soooooooooooo looking forward to getting things back the way they need to be.
Last night, around 11:45 Colby woke up crying. Nothing too bad, just him crying in bed. I thought maybe he was hungry as he didn't finish his bottle before going to bed last night. So I came into the living room, headed a bottle for him and tried to give him some. He wanted nothing of it. He was just crying and not himself. Then, he started throwing up. He fussed in my arms until he fell asleep. Tracey laid down with him on the couch and slept with him most of the night. This morning, things seemed normal enough. He took his bottle and ate most of it. Then, out of the blue, he threw it all up. If you know the smell of formula, think of that, warm....mixed with the throw up smell. Yeah..good times. He emptied his belly and was a bit groggy. So we put him down for a nap.
Tracey and I had talked last night that if he threw up again, we were going to call his neurosurgeon as this is how things started two week ago. We called his neurosurgeon and were told to try smaller amounts of diluted pedialite. If he can't keep that down, to call him back. This is the same way things began last time. He was himself, but just kept throwing up. Then as things progresses, he weakened and became very lethargic.
Colby is now up and playing on the floor. Seems much like his normal self, but a bit pale and quiet. I'm going to wait until 10:30 and try to feed him a couple ounces. I then need to stay close to him with a bucket in the event things don't stay down. Then I'll try again at 11:30 and 12:30.
So this pretty much derails our plans. If Colby has a touch of the bug, we don't want him around people tonight and tomorrow. If it does turn out to be his shunt, well, we'll spend another X-mas in the hospital....that will make two years in a row....I wonder if he'll get a prize or something. At least that's what I'm telling Colby to keep his little spirits up. Either way though, I think we'll need put all our plans this week on hold until we have a better understanding of what direction this will take.
This isn't what we had planned. But just like many other events over the past year and 1/2,we'll make the best of things and get through it.

Happy Birthday Mommy

2008-12-20T07:46:00.004-05:00

Today is Tracey's birthday. To my best friend, a wonderful wife and an excellent mother. You have been part of my life for 11 years now and day after day, I fall further in love with you. Colby and Evan are lucky to have you as their mother, a mentor and friend. I hope as you look in the mirror today you see what we see every day.....a strong, beautiful, loving woman.

Colby, Evan and I wish you a very Happy Birthday!

Love Sunday Mornings

2008-12-14T10:25:00.004-05:00

("so, mommy, you think you're going to try to feed me yogurt today?")

("um....nope...I'm not feelin' it. No yogurt for me today!")

("ha-ha, I didn't eat the yogurt!")

("ow man, so you cleaned me up and threw a pile of...um....crumbled "stuff" on my plate. Can I have the yogurt back?").

(How can you get mad at this little guy?)

Knock on wood, his incision seems to be healing without any complications. He was a very happy camper yesterday. All smiles. I think yesterday he was feeling best he has in a couple weeks.

He's still not eating like he used to. I think it's just a phase, not related to anything with his shunt or surgery. He's just picky as anything now. If you find something he's in the mood for, he'll eat it like a champ. But if it's not to his liking, you can't even get him to open his mouth!

Tracey has been working 3rd shift Friday and Saturday nights, 10pm to 6am. It just changed this week to Saturday and Sunday nights. I'm really not thrilled that my wife has to work third shifts. But both of our attitudes are that we will do whatever we need to and simply get through it all. We talk about how once Colby's able to go to a daycare or preschool, it will be so much better. Right now, someone has to be home with Colby. He can't go to daycare because of his lungs. We wouldn't want to put him in daycare all week, but it would allow Tracey and I to have a more "normal" work schedule. We juggle who's working days and evenings to ensure someone is able to watch Colby. My mom has been a HUGE help watching Colby Tuesdays and Wednesday mornings which allows Tracey and I to both work that day. I'm sure many parents out there have similar stories.

Anyway, so Tracey gets home a little after 6am on Sunday mornings and goes right to bed. That puts me on Colby duty. He and I have a regular routine we follow. Once I hear him stirring, I get up, start warming his bottle and brewing my coffee. Once both are about ready, I go get him from his crib and we make our way into the living room, with a stop in the kitchen to get our beverages. I plug him with a bottle and start enjoying my coffee. He'll often look over at me. We'll "talk" to each other. I'll say something to him. He'll give me a smile showing off his two bottom teeth. Or he'll babble something back to me. I'm sure he knows exactly what he's telling me. But for now, it's pure babble to me. Then we hang out together. Sometimes we play, sometimes we both do our own thing. It's just a nice, quiet start to the day.

Colby's funny when he sees either pictures of himself or of other babies. He looks at them very intently and often smiles or laughs. There's a picture of a baby on the yo-baby yogurt he eats. So he smiles when he sees that. I'll show him pictures or movies of himself and he's captivated. I'll try to get some videos of him reacting and post them.

...and a couple more things...

2008-12-11T21:40:00.002-05:00

I forgot to mention a couple things about Colby's recent "adventure". I finally asked the doctor about his PVL. For those who don't remember, PVL is essentially dead spots in the brain. A severe brain bleed can cause areas of the brain to die. At first we were told that we should feel lucky because Colby didn't have any PVL. Then months later, when talking with the neurosurgeon, I made the comment that he made it through his brain bleed without any PVL. The neurosurgeon corrected me and stated that he did if fact have some PVL. I was so in shock that I didn't think to ask how severe it was. It can be little spots the size of sand or huge areas of the brain. So, I figured as long as I had the neurosurgeon's in the room, I'd ask. He said it was very minor. That's all I needed to hear. I don't care where in the brain it is, exactly how much...etc. That simply put my fears to rest.
Secondly, some of you may recall that before Colby had his shunt placed this past February, they first tried a third ventricalostomy when they when through the top of his head, down through his brain, through the ventricle to the bottom and cut a small hole in the bottom to allow the cerebral fluid to drain. At first it seemed like it was working. Then we noticed his head was starting to get larger again and the CAT scan showed that it failed. Well apparently the success rate for a third ventricalostomy is rather low for children under 2 years of age. But the success rate increased dramatically as the individual gets older. So in the event that Colby's shunt malfunctions in the future, they may try another third ventricalostomy to avoid having to deal with a shunt.
So that's it. Just a couple other rather important details that I forgot to mention.
Colby continues to do well. Birth to three came this morning and said he is lacking in upper body strength. Tracey or I could have told them that. He have never liked pushing himself up. So we need to work on that.
He isn't eating too much since he came home from the hospital. And even prior to that he's been a very picky eater. That's not like him. So the doctor today told us to start keeping track of how much he's eating and what he's eating. It's funny how you never know how things may change. We were counting our blessings that he was a good eater...now he's apparently changed his mind. We'll just have to do what we can to tackle that and get him back on track!

Colby's home and doing well

2008-12-11T08:06:00.002-05:00

We were discharged from the hospital yesterday morning. The doctors said everything was looking good and that we just need to watch for signs of infection or that the shunt isn't working properly. We have a follow up appt with the doctor for December 23rd.

Colby was a bit groggy and a little cranky yesterday. But that's to be expected. He's back to his normal self today, playing and babbling away.

They put quite a bit of tape on his poor little head (see pictures above). That's not going to be fun for him when we take it off.

So we're back to life as "normal". Thank all of you for your comments and e-mail. I've said it before...it honestly means a lot to be able to vent via the blog and to have the support of so many.

Update from Colby's hospital room

2008-12-09T20:54:00.003-05:00

(Colby out cold recovering from his shunt replacement)

Well, Tracey called the neurosurgeon this morning because Colby wasn't getting any better. They asked that she bring him into the hospital around 8:30 where they did a CAT scan and discovered that he had outgrown his shunt and it was malfunctioning, thus putting pressure on his brain again.

Colby went into surgery around 2pm this afternoon to have a longer tube put into his ventricle.

He's doing well tonight. Very tired and pretty groggy. But he took his bottle and even ate some Cheerios. They've got him hooked up to a bunch of monitors. It's been a while since we had to juggle the wires and probes when holding him. Boy does it bring back memories!

The plan is that I'll stay with him through the night. The doctors will take a look at him and if all looks well, he'll come home tomorrow. Amazing that someone can have surgery that puts something through their brain one day and then they're sent home the next!!!

Both Tracey and I are exhausted. We've been taking shifts over the past couple nights to watch over him at home. She's been taking care of him the past two days while I worked. We've both been worried about his condition, wondering if it was his shunt. Now that we have our answers and his surgery is done, we're relieved and tired.

So that's the latest. I'll post more tomorrow after the doctors come in.

Sick little guy

2008-12-09T05:56:00.002-05:00

The last couple days have been long ones. Colby has been pretty sick since Sunday evening. He started throwing up around 8pm Sunday and hasn't stopped since. He just happened to have a doctor's appt yesterday so the doctor looked at him and thought it was just a stomach bug. All his symptoms mirror that of a stomach bug...vomiting, irritability, being more tired. But when a baby has hydrocephalus and a shunt in their head, you have to question if this means his shunt is malfunctioning. Signs of a shunt malfunction include vomiting, irritability, being more tired than usual. Hmm, sounds familiar. Other signs of a shunt malfunction include loss of fine motor skills, impaired use of parts of the body, enlarging head and "sunsetting" of the eyes meaning the eyes will look straight down and the person won't be bring their eyes up. Thus far, we haven't seen any signs of these. But Colby is totally not himself. To be safe, if he doesn't show some signs of improvement today we're going to bring him to the hospital. They can either do a CAT scan or put a needle into his shunt to test the pressure to see if it's working properly. We don't want to be paranoid, but we can't be complacent either.
Colby's sleeping on the couch, all wrapped in blankets next to me. Tracey stayed up with him most of Sunday night. Last night, she took the first half of the night, I took "second shift". He took about 5 ounces of Pedialyte for me around 4 this morning and thus far has thrown up twice since then, but not much is coming up. So at least he's able to keep some in his belly.
The doctor also said yesterday that Colby had lost weight. He was down to about 17 pounds. Although this could have been because he was sick, he had only been throwing up for less than 24 hours at that time. So they may end up sending us to a specialist to see if he's able to absorb all he is supposed to.
So that's the latest. As always, life is full of it's ups and downs. Colby's sleeping on the couch, all wrapped in blankets next to me. With a little luck, today will bring some better news for him.

Just some pics

2008-12-07T20:59:00.008-05:00

There's our boy!!!

(Colby wearing his new polar bear hat as we went to get our X-mas tree today)

(Colby and mommy at Colby's first X-mas party)

(I love Colby's expression here)

(Colby and the best big brother in the world!)

Four Teeth !!!

2008-11-29T08:53:00.004-05:00

(Tracey and her sisters Amie and Sarah)

(Colby and grandpa Dave)

(Colby and Grandma Linda)

(Colby and Aunt Amie)

(LOL, Colby looks as if he wants to say "Dad....what are you doing????")

Colby's been doing very well. His top two teeth have pushed through. You can't see them yet, but you can feel them. That makes four teeth now! He had what looked like a cold, then turned into a cough and now as all but disappeared. We're glad that it didn't turn into anything much. If we can just make it through this cold season without any issues, we'll feel much better!

He has a toy....kind of like a gumball machine where you put little balls in the top, then have to pull a lever to get the balls out again. We've been working with Colby first to understand how to put the balls in and secondly, how to pull the lever and get the balls back out. He's finally got it! It's not 100% of the time, but he gets the connection. I know it may seem like a small thing, but it's just so awesome to see him drawing the connection that if he does something, something else will happen.

He's still not crawling. It seems like he has little strength in his arms. He just won't push himself up. Well...he will, but only for a quick second, then he'll fall onto his belly and he's content to lay there or flip onto his back. We'll have to keep working on that!

Although this is technically Colby's second Thanksgiving, he was in the NICU last year. So we're counting this as his first. We had Tracey's family over our house. We love to entertain and really having Colby interact with other people. It was a nice day.

Colby's crying and probably wants a bottle, so I'm going to wrap up this entry and post it. Hope that all of Colby's Fan Club had a wonderful Thanksgiving.

Some thoughts....

2008-11-17T19:09:00.005-05:00

(taken this morning)

(Jumping in your jumper in the morning while still in your PJ's can really tire a boy out !!!! I notice the other morning that he was really quiet, so I looked over and he was out cold!)

It's been a while since I really wrote anything meaningful in my postings. Things have been busy with work and with Colby slowly progressing, I sometimes feel as if I'm repeating the same things over and over. But I thought I'd take a minute to share some thoughts.

I continue to feel so lucky and thankful for Colby's progress. My feelings will ebb and flow. At times I'll see another baby that's younger than he is and progressing so much more quickly. But I can't change the fact that he was born premature and had come complications. So I quickly divert my attention to what he IS doing and what he HAS accomplished. He's such a joy in my life. I was talking with another dad and we were talking about how it may be a bit different with men and women. Women are instantly bonded with their children. But with men, it seems that the bond strengthens over time. When Colby first came home, he just ate and slept. Sure, I enjoyed spending time with him, but boy has the experience changed now that he's interactive and really seems to recognize me. He's started to repeat certain things we do. It's not 100% of the time, but you can see that he draws the correlation. If we do that thing with our finger on our lips, he'll do the same. If we shake our head like we're saying "no", sometimes he'll repeat it. Same with 'ma ma ma" and "da da da". He'll also talk in what we can his "Pirate Voice". It's a raspy, lower pitched voice. It's just so neat to see your child making those connections.

Our last year and 1/2 has been an absolute roller coaster. In looking at pictures of Tracey and I just a year or so ago, we looked so much younger. Sure, we're getting older, but I really feel that this past year and 1/2 has taken a lot out of us. I'm not complaining. It's just the way life goes sometimes.

And looking back at how small Colby was, I had no reference to compare him to. I knew he was small.....but now looking back...ow my god!!!! He wasn't small, he was down right tiny! And look at him now. He's got big giggly cheeks, meat on his legs and arms and enough strength to give us a hard time if he doesn't want to put a shirt on or something like that.

Yes, he has a shunt in his head. Yes, he's behind. Yes, there are still unanswered questions about his future. But given where he's come from, he's come so long and I'm teary-eyed to write that my son is doing so well!!!

Our little boy is just that now....... not so much a preemie, but a little growing boy. I thank those of you who follow his story. I thank you for your interest in his well being and for your support. I hope one day Colby can look back, read his story from way before he can remember and feel proud of himself for accomplishing so much and for touching so many people's lives.

Some pics

2008-11-12T06:48:00.003-05:00

(Colby's been making this face every so often now. He'll blow out of his nose and because his lip is right up against his nose, it makes a sound as if you were to breath really hard in and out of your nose.)

Gramma Vikki got Colby a new hat for the colder weather. It fits him wonderfully. Thank you gramma Vikki!!!

Some videos

2008-11-09T19:56:00.004-05:00

It's been a while since I posted any videos, so I kept the camera handy this weekend and took some video of the Colbster. I was hoping to get Colby in a talkative mood, but I swear he knows when the camera is on him. He'll be chatting away and then when I turn the camera on and start recording, he becomes all serious. LOL

You can see his new glasses in the video below. He does really well with keeping them on. He does this thing with his lips that's really cute. Now it's to the point that if you do it he'll mimic you.

The below video is a rather simple one. But I love to see him problem solve. He loves his little treats. Here, he apparently dropped one and was looking for it. He then turned his attention to his glasses, got them taken away....and....cried.

And lastly, him in the tub and with mommy tonight. He loves him mommy and for good reason. Tracey is sooooo good with Colby!

I'll continue to try to get him babbling away. Hope you liked the videos.

Colby's new glasses

2008-11-01T07:06:00.003-04:00

(Colby clears his throat and begins to read..."Once upon a time......"

(Colby says "Well mom, let me see here. I'll take a look a this thing now that I can actually see what I'm looking at and tell you all about it.)

( If any of you watch Jake and Kate Plus 8, you may remember Joel. He's one of their 8 kids and has glasses. Sometimes Colby reminds me of him now that he too has glasses)

(I love this picture. )

Colby got his glasses yesterday. He doesn't seem to mind them too much. I was thinking that he'd try to pull him off his face constantly. But he'll try for the first minute or so when you put them on. Once he knows that we won't let him take them off, he gives up. Then about 5 or 10 minutes later, we'll look over at him and he'll have his glasses in his hands. That's OK, all in time.

He went through a short phase this past week of being cranky and not quite himself. We wondered if his top teeth were finally coming in. But still nothing there. Then we thought he was getting a cold because his nose was running, he was coughing and his eyes were puffy....but not it's pretty much gone away. We also thought he had a touch of pink eye because he was rubbing his eyes, they were red and he'd have gunk in them. So the doctor gave us some medicine. Now that's gone too. It's so difficult when someone can't tell you what's wrong...you just have to guess.

My mom comes to our house every Tuesday and stays over night into Wednesday. She's an absolute god sent! Tracey works Tuesday afternoons into the evening and Wednesday during the day. I need to keep my schedule busy so having mom here every week allows us to work My mom took Colby over to her house this week. The break was wonderful for Tracey and I. We missed Colby dearly, but I think it's healthy to get some time to recharge and keep things in balance. It was great to have him back home though!

We were a bit of Halloween scrooges yesterday. We didn't dress Colby up. Tracey was out running Evan around to his father's house from 5pm to around 7pm (prime trick or treating time). I was in the office until about 7. It just didn't work. At Colby's age, he doesn't know the difference anyway. Next year, I hope he's able to get into it a bit more.

Developmentally, Colby is still moving along, slowly but surely. He's gaining some strength with his arms and is tolerating his belly time much better. He's more comfortable rolling onto his side. He still won't roll from his back to his belly. If he accidentally finds himself on his belly, he'll usually try to flip onto his back. It is difficult at times when I see other one year olds crawling around or starting to walk....then there's Colby, still just sitting there. But his time will come.

I do believe that with children like Colby, they need extra guidance to get them crawling, walking etc. I think in some ways it's a bit too easy to simply let things slide....but I really feel the best thing I can do for him is to support him, love him, but try to help him catch up as quickly as he can. It doesn't do him one bit of good to be behind. I plan to work with him today on his belly time. We've found that once he learns to do something, he progresses rather well, it's jut a matter of getting him to do it.

So that's the latest in our Colby's journey. Hope everyone had a wonderful Halloween.

Our little cowboy

2008-10-24T21:32:00.005-04:00

(Colby says "Howdy folks. Hope y'all enjoy the pictures.")

(Is this a boy who loves his mother or what?)

(Showin' his toofers)(Tracey took some great pictures of him wearing his cowboy hat today.)

(Munchin a cookie)

(Taken about a month or so ago while we were in Cape Cod)

Colby's right eye has been getting more and more crossed lately. Not exactly sure why. It doesn't seem to bother him too much. But it must be hard either seeing double or having your brain use only one eye. I'd imagine the depth perception must be off. Tracey ordered his glasses this week. Hopefully they'll be in next week or so. I can't wait to see what he looks like in them!

Apart from that, Colby has been doing well. It seems like he's plateaued a bit in his progress in the last week or so. He's been very quiet. I think his gums may be bothering him. Hopefully once his teeth push through, he'll be back to his old self again.

I hope you enjoy the pictures!

Apple Orchard Visit

2008-10-20T07:49:00.004-04:00

Just some quick pictures from our trip to the apple orchard this past Saturday.

Putting things in perspective

2008-10-18T08:02:00.003-04:00

Tracey brought Colby to look for glasses yesterday. I guess his prescription is going to make at least one of his lenses rather thick. Couple that with the fact that he's so little and still a falls over quite a bit and we think we're going to end up with some...well....rather thick and not so stylish glasses for the Colbster. We are going to continue to look around and hopefully we can find something that fits him, gets his prescription right, but doesn't look like he has swimming goggles on! Ow well, it is what it is and as he gets older, there may be some things we can do to help his vision.

I'm still not entirely sure what his vision is....or what he can or cannot see. I guess one of the main things right now is that he's a bit cross eyed. So he's using mainly his left eye. It's amazing how the brain can some how shut off the information coming from his right eye and allow him to focus with just one eye. He's not horribly cross eyed and at times his eyes seem to both be focused on something correctly. But then other times it's very clear that his right eye is turned in.

Having glasses isn't the end of the world (as I type this looking through the glasses resting on my nose). I know Colby's situation is probably quite a bit different than mine, but I have hope that over the years they may be able to do some things to help straighten his right eye and correct his vision a bit. And if not, that's OK too. As it is, without glasses, he's able to see things fine it seems. He'll watch everything that goes on around him. He can focus on his little treats that we give him. And given the laundry list of complications the doctors told us he might have, at least thus far, we're continuing to beat the odds.

I've tried so hard though out his journey to keep a positive outlook. I do believe that you can in some ways influence your future. I'm sure all of you know people who are always complaining how bad their life is, all the bad luck they have and how things just suck. But if you take a step back and look at what's happening to them, I think it's much the same with that's happening to you and I. They just choose to focus on the negative, bring it to light and thus magnify it's affect on their life. I'd rather acknowledge that it sucks.....and move on. So much in life is all how you look at it and how you choose to react.

Tracey got Colby a high chair yesterday. He's been sitting in his bumbo, but it starting to get too big for that now. This fits him better, has a nice big tray and keeps him a bit more confined. When we'd but him in his bumbo, he's big enough that anything with a two foot radius of him was fair game! You'd set him down, move things way, then start tending to dinner or whatever and you'd hear his little hands getting into something. Although his butt would be in the bumbo, he'd be slouched over the sides, his arms outstretched reaching for things. LOL

We're still waiting for more teeth to break through. He's been drooling a lot and a bit cranky, but no more teeth. Just the bottom two for right now.

It's looking like a nice fall weekend in Connecticut. So I think I'm going to head over to the NICU today to visit them and let them see Colby. This afternoon we plan to go apple picking which will be nice. I love bringing Colby out to expose him to new things.

Mr Fussy

2008-10-15T19:40:00.003-04:00

(What a big boy holding his own bottle!! Just a couple weeks ago if you tried to put his hands on his bottle, he'd either pull them away and cry or hold it for a little bit and drop it. Now, he'll reach out, grab the bottle and bring it up to his mouth.)
(Our messy little man)
(Grandma reading Colby a book before bedtime)

The last couple days, Colby hasn't been quite himself.....just more quiet and a little cranky. Tonight is more of the same. We think his gums are hurting him and that more teeth are pushing through. He has two on the bottom right now. Maybe he'll start to break through on the top. Just have to wait and see.

As I drove to an appointment today, I was thinking that just one year ago, we were juggling day to day life with having a baby in the NICU. It seems like so long ago. I remember saying to myself that we just needed to get through that hard time. That as time goes on, things well improve. Sure enough, here we are a little over a year into Colby's life and things are going so well.

Too long

2008-10-12T21:38:00.003-04:00

(Colby in his fire engine PJ's)

(Colby having fun with Grandpa)
(Colby and daddy at the Garlic Festival in Bethlehem today)

It's been way to long since my last update. I think this is the longest I've ever gone. Sorry about that.
Lot's going on though. Colby had his one year checkup. He's just under 18 pounds now and he grew 4 inches since his last visit. He's really getting to be a big little boy.
He continues to refine his fine motor skills with grabbing things and passing things easily now from one hand to another. We think he's definitely right handed as he uses that hand most of the time. He's started to try to grab the spoon when we feed him. If we give it to him he'll shove it into his mouth, sometimes gagging himself, but at least he gets the idea.
We've really been working with him to feed himself with his bottle. For weeks he'd just cry with his arms straight out beside him. We'd take his hands, bring them to his bottle, but he'd pull back in protest and as soon as we let go of his hands, they'd go flying back to his sides. I guess something clicked and now when we put the bottle in front of him he'll reach right out, grab it and bring it to his mouth! Huge change in our independence....being able to tend to other things as he's taking his bottle!
He's been eating some plain yogurt mixed in with his fruit and is tolerating that fine. He's a great eater and we're thankful for that. We've finally been able to get him off of the Pregestamil and he's now on Nutragamil or something like that. It's a bit less expensive so we're thrilled to be able to start saving a couple bucks on his food. Especially now that he's sucking down the bottles!
Crawling...well...that's still not happening. Although he's tolerating his belly time much better than he ever has, he still doesn't get that he can move himself around. If you put him on his belly, his legs go straight out in back of him and he'll push himself up a bit on his arms, but before too long, he'll just plop down and either be content to just lay there or he'll start crying.
He's a jabber mouth though. Just babbling away. Da-da-da seems to be his favorite thing to say....or at least that's what I think. Maybe I'm biased.
Anyway, I'm so sorry for not posting anything for so long. I'll honestly do my best to post updates, even if they're short ones, more frequently.

Quick update

2008-10-02T07:09:00.002-04:00

....blame the market. Everyone else is....
Sorry I haven't updated the blog in a bit. I've been absolutely flat out with work lately. If any of you watch the news you can understand why I'm suggesting that you blame the market for me not having time to update the blog.
So...how's our boy? Wonderful!! He had an eye doctor's appointment the other day and we were told the Colbster will need glasses. Of course our first choice would be that he didn't need them, but now that we know he does, we're looking forward to picking out a little pair of glasses for our boy. We can't wait to see what he'll look like with them. I guess they can somehow tell with kids as young as Colby whether or not they need glasses. Amazing....
Apart from that, he's doing really well. Just babbling away and happy as could be.
I'll have to take some more pictures soon and post them.

The Farmer's Market

2008-09-21T22:44:00.005-04:00

(I love my boy!!!!!!!!)

(Colby drumming away with mommy's help.)

(Here is Paul, Blaik and their family. They had this Chariot thing which you can see in the left of the picture. It was like the SUV of strollers. The thing did everything but change the babies diaper!)

We went to an awesome farmer's market today in Coventry. Tracey had gone before, but I'd never been. Our friends Paul, Blaik and their three kids met us there.

There were live animals there for Colby to see. A guy was doing a drum circle and Colby got to bang on some drums. They had a small fife and drum (I think that's what you call it) that he got to see. Paul and Blaik have two adorable girls who are great with Colby. Each time they've seen him they're rather interested with his shunt. I can't imagine what they must be thinking.

It's great to be able to bring Colby out without him squinting all the time and doing his "eye thing". Plus at least for now, we don't have to worry too much about him getting a cold. Another month or two and we'll need to be more cautious about where we bring him. We want to ask the doctor, probably the pulmonologist, when it will be OK for him to get his first cold. Some things are out of our control, but things like that which could really set him back, I'd rather be cautious about.

Just some pics

2008-09-20T10:59:00.004-04:00

(I gave Colby a bath the other day in the sink. He seemed to really enjoy it. We had some pans in the other side of the sink that he was pretty interested in. His hair is still pretty short and thin. But the spot where he had his shunt placed has always had darker, longer hair. So that's the only area I could spike while I was shampooing his hair.)

(Colby went to his first birthday party the other weekend. Thank you for having us at your birthday party Brennon! We had a great time!)

(And here are some pictures from the other night when Colby first used his fingers to put some smaller treats into his mouth. I can imagine Colby saying " Come here you little....treat. I know I can do this!")
("Gotcha! Now....if I can just get you to my mouth...almost........ow yeah!!!")

(Ta-daaahhhhhhh!!!!! "I'm gettin to be a big boy. I can now put little, itty bitty treats into my mouth. I rock....'cause I'm the Colbster!")

Tiny Fingers

2008-09-16T08:18:00.002-04:00

Colby had another accomplishment last night. His fine motor skills are a bit delayed. So he's been grabbing at things, but it's not refined at all. He'll grab something, pull it to his mouth, or pass it from hand to hand. But for the most part, it's been larger items....toys, bags, balls, etc. We've been trying to get him to pick up his little treats off his tray and put them in his mouth. They're about the size of a Cheerio. At first he didn't really seem to realize they were there. He's swipe his hand across the tray, pushing them off the side and onto the floor. Then he realized they were there and would open and close his hand on them, over and over. Next came grabbing then, bringing his hand out to his sides...and dropping then. But never could be help him draw the correlation between the food being in his hand and getting it into his mouth. He knew that if we picked them up, he would bring his head forward, open his mouth and try to suck the treat up. He also knew that he could put a biscuit or other larger food items into his mouth and had no trouble what so ever doing that.
Anyway, so we've been trying to show him that once he has one in his hand, that he can bring it to his mouth. He would pull his arm away and fuss out of frustration. But then last night, he was in his bumbo and I put the tray on it, poured out some treats. Things started as usual...treats being pushed off the side, down in front of him and off the front. So I took his and gently brought it to his mouth. I figured after I let go, he's fuss, pull his hand out to the side and that's it. But instead, I let go and he looked down at his tray, eyed a treat and went right after it. And he did this over and over. His only trouble now is the fine dexterity of picking it up with is forefinger so he can easily get it into his mouth. But he's got it. It's was just so neat to see like a light bulb going off.

So that's the latest with the Colbster.

More milestones!

2008-09-12T21:00:00.003-04:00

We noticed just the other day that Colby is getting his first tooth!! We've been wondering when he would start teething. Well, now we know. He's doing fine with it. He doesn't take his binky like he used to, but that's understandable. You can't really see the tooth yet, just feel it.
As you can see from the video, Colby is really enjoying his jumper. Just the other day, he started literally jumping in it. It seems like he gets a kick out of jumping.
He's also doing much better with his tummy time.
Little by little, our boy is making progress !!

Update on Colby's "eye thing"

2008-09-08T21:12:00.003-04:00

As you know, Colby developed an "eye thing" a couple months back. He would squint his eyes, look just about straight down and sometimes turn his head a little to the side. There didn't seem to be any rhyme or reason to these spells. But they gradually increased in frequency to the point where some days it seemed like we was spending more of is waking hours with his eyes squinted and not.

We brought him to the ER while in Maine, then to his neurosurgeon back home and both suggested that it may be seizure activity. So we had an EEG done, met with a neurologist and were told that although the EEG was abnormal, there didn't seem to be any seizure activity.

So....it was suggested we go see an eye specialist and maybe it was some kind of eye spasm. The appointment was made.

Then, even quicker than these episodes began, they've disappeared with seemingly no lasting effects. We're still going to follow up with the eye doctor on other vision questions and mild cross eyed-ness. We will ask them about these spells but I'm sure when we bring him their report will be "Well, being that he's not doing the "eye thing" now, all we can tell you is that...well...he's not doing it." Hopefully they will have seen similar cases and can offer some insight.

Either way, our little boy's "eye thing" is, at least for now, a thing of the past.

A Visitor from Chile

2008-09-07T19:05:00.004-04:00

(Francisco, Colby & I)

I think in one of my postings I explained how I lived in South America for a year. In Chile to be more exact. I was a Rotary Club Youth Exchange Student and went down there the year after I graduated from high school here in the US. I lived with a wonderful Chilean family who took me in as one of their owns sons. They had three sons, Rodrigo, Francisco and Felipe. Francisco was up in the US doing his year abroad when I was down there, so we never met. Francisco now works for a Chilean Wine maker and was up traveling around the Northeast on business so we got in touch and he came over the house for a couple days. Great to meet him and get updates on my Chilean family. I hope one day to go back to Chile to visit everyone. It's been 15 years now so I'm sure a lot has changed. I'd love to teach Colby some Spanish too when the time comes.

("Ow no daddy, I hope you're not mad at the mess I made.)(No way Colby. How can I get mad at this cutie!!!)

As for Colby.....we have an occupational therapist who comes every other week (the weeks birth to 3 doesn't come). This was only her second visit with Colby and she was pretty pleased with his development thus far. We're still trying to work on his arm strength to help him push himself up when he's on his belly. Then to crawl when he's ready. It's a slow process. He really just doesn't get it yet that he needs to put his arms down. When he falls over or goes onto his stomach, his reaction is to pull his arms upward. So that's the latest thing we're working on with him.

She asked if he seems hypersensitive with his hands. Some babies who spend a lot of time in the NICU get a fear of touching things or being touches as they were poked and prodded so much that they think anything that touches them will probably hurt. Luckily he doesn't seem to show any signs of that. I do remember when he was in the NICU that Tracey and I would regularly have our hands in the incubator simply lying our hand on him, touching his hands and feet or gently rubbing him. I wonder if in some way this helped a bit.

Anyway, she asked if he was adverse to touching wet things. We didn't think he was but weren't too sure. So the other day I smashed up a banana and put it on his tray. He's NOT adverse to touching wet stuff !!!!! He seemed to enjoy smashing it around and spreading it just about anywhere he could. All was well until he started putting his hand up in the air and slamming it down on his tray, thus spreading banana everywhere.

Another change is his formula. We've wanted to see when we could introduce a new formula. Ever since he came home from the NICU he's been on a special, predigested formula called Pregestimil. It's pretty expensive and now that he's eating more, it's getting pretty tough. We can no start to introduce a new kind of formula. It' still expensive, but it's about $5 less a can. We'll take any savings we can! We just started yesterday and at least thus far, he seems to be tolerating it well.

Video of Colby talking

2008-09-02T08:08:00.003-04:00

(Colby is rolling onto his side a lot more lately. He still doesn't seem to enjoy belly time too much, but he's getting better.)
(I love this boy!!!)

(And here's a video of the Colbster chatting away. Sometimes he'll do ma ma ma, or da da da. Lately he just started na na na. Or other times he'll just do this odd scream/screech thing. Either way he melts my heart when I hear him. )

Colby's B-day Party

2008-09-01T08:27:00.006-04:00

(Colby just woke up from a nap right before we cut his cake. He wasn't too sure what to make of it all.)

(Chris, Liz and Pete...well....attempting the board walk game. Hey...you made it a little past the start line! LOL)
(The girls had their stuff together. Tate, Gabrielle and Alexis cruised along making it look easy.)
(Thank you Amie for showing me the Youtube of this game. With some work we created it as best we could. Here's Patti going out for her marshmallow.)
(Leo really seemed to get a kick out of the game.)(Of all the games, the egg toss seemed to be the biggest hit)(Then came the medals)(Thanks again Eric for coming to play! It sounded great!)
(Then back home at the end of the day. Colby loves his gifts and really seemed to enjoy chewing on the cards and envelopes!)

First and foremost, THANK YOU to everyone who come to Colby's Birthday Party. It was a beautiful day, Colby was in a good mood and it seemed like people enjoyed themselves. That was the whole point of the day. Yes, it was Colby's B-day, but there have been so many people who have supported us that we wanted it to be a fun day for everyone and I hope it worked out that way.

Colby stayed awake almost the entire time, being passed along from one person to another to say their hellos. He fell asleep right before we were going to cut his cake, so we had to do a change in plans. When we did cut his cake he had just woken up so he was a bit spacey. Then last night he didn't want to go to sleep. He'd rather play with all his fun new stuff.

People started coming in around 12:30. The food started around 1:30. I had put together a bunch of games to get people involved and give them something to do, but it was hard recruiting teams. In the end we did the marshmallow game, carrot race, egg toss and boardwalk. Thank you to those who participated. If anyone has pictures of the carrot race, please e-mail them to me as I couldn't find my camera in time and would love to post a couple pictures of that.

Then we had medals to hand out to the winners. Washers from Home Depot put on ribbons. Then I put peppermint patties on ribbons for the kids. Eric Heath from the band Columbia Fields came and played for a bit. He's the awesome musician who's music is on the blog. People hung out under the pavilion, went to the beach and over to the playscape....it just worked out so well.

It was wonderful to spend the day with so many friends and family. It's great stimulation for Colby and I'm glad so many of you got to see him and spend time with him. Thank all of you again for making it such a great time!

Colby's Big Day !!!

2008-08-31T08:04:00.004-04:00

(If you're holding Colby while you're eating, he'll watch your fork go from your plate, right up to your mouth. Sometimes he'll open his mouth like he's thinking you're going to feed him.)
(And sometimes we do give him a lick of whatever we're eating. We haven't really found anything he doesn't like yet.)

(Whenever Tracey and I travel, even for a day trip, we love to find coffee shops and just have a coffee an pastry or something. This shop was more of a typical breakfast dinner kinda place on the way home from the Cape. Colby seemed to have loved it because he was giggling and smiling almost the entire time. He loves to get out and about. Usually when we bring him somewhere he'll get all excited, kick and wave his arms and start babbling. Such a cutie!!!)
(Colby's also entering the phase where everything....EVERYTHING goes into his mouth. We sat him in his own little chair which put the edge of the table within reach. And no...we didn't let him chew on it. )

(Our little gummy boy. Hopefully some day soon he'll start breaking some teeth!)

Well, today is Colby's big day. We're having his birthday party today. Mother nature seems like she's on our side today as it's going to be an absolutely beautiful day. Colby's actual birthday was on Wednesday, but we were away and it was the middle of the week. So we've got big plans for our boy today. I think he must know it's his special day because he's been very happy and vocal this morning.

I'll post pics from his party either tonight or tomorrow morning.

Heading home

2008-08-29T07:27:00.004-04:00

(Colby in his cool shades. Thanks again for sending them, Caz!)

(Mom, Brige and I)

(We brought our bikes and then rented one of those trailers to plop Colby into. He really seemed to enjoy it. He just babbled a little bit during the ride, but apart from that, just sat there and looked around.)(I love all the life in the ocean. Evan and I throughout the years have always searched through tide pools, waded into marshes and looked for fish in the ocean. We bought a couple of basic ocean poles for the trip and tried fishing a couple times. However, we had no luck what so every. I had a very large chunk of sea week on my line here...but hey, it looks like I'm pulling in a lunker!)

Thank all of you for your comments on the blog and e-mails! It's amazing to see so many people from so many different places following Colby's journey.

Well, we're wrapping out our trip to the Cape and heading home today. What a wonderful vacation. Our little boy turned 1 and had a couple of firsts....first time to the ocean, first bike ride, first time in a pool. I hope to get home at a good hour today as we have Colby's B-day party on Sunday and we still have quite a bit to do. I'll have a ton of pictures come Sunday night or Monday!

Happy Birthday Colby

2008-08-27T07:16:00.015-04:00

(Colby at just a couple days old)

(Colby's first month was a long one for him. His intestine ruptured which made him have a colostomy bag for a bit. But he fought strongly and did very well. He also get aquainted with the CPAP)
(Colby's second month saw more challenges. They put his belly back together which put him back on the resperator for a bit.)
(Maybe at month three he knew he was #1. Colby got off the CPAP and we started to have discussions with the doctors about bringing him home.)
(Month 4 brought a couple of ups and downs. We were told we would probably be bringing him home around Christmas. Then just a couple days before he was to come home we were told he would need to be transported to a new hospital to have stest done regarding his hydrocephalus. Colby spent his first Christmas in the hospital while mommy, daddy and grandpa visited him.)
(Colbys fifth month brought him back into the hospital to have a third ventricalostomy to treat his hydrocephalus.)
(At 6 months he got his shunt)
(After his shunt was placed, he really seemed to blossom. At seven months, he was sitting up in his bumbo)

(At eight months, he was a happy little boy and really starting to giggle)

(Nine months brought summer and warmer weathe to get him outside more.)(Colby's 10th month showed a lot of progress with his motor skills, babbling and interaction.)(At eleven months, Colby really figured out he had a tounge and started sticking it out a lot, sitting up and babbling ma ma ma, da da da and ba ba ba)

(And here's our big boy just a couple days ago, sitting up big and tall taking in the world around him.)

To my son,

Mom and I waited many years to meet you. You came into this world in an extraordinary way, fighting and working so hard to overcome challenges that life brought you. This must have been a sign of what an extraordinary boy you would become. Mom, myself and so many others supported you throughout it all knowing that with some help, you could overcome just about anything. And look at you now, one year old, a happy, strong little boy. Growing, babbling, laughing away, you melt the hearts of so many. You've bought such joy to our lives and completed me in ways you can never imagine. That's all because of the wonderful little boy you are.

Thank you Colby for coming into our lives.

I love you,

Daddy

Colby's Birthday Eve

2008-08-26T07:48:00.004-04:00

(I still love the black and whites.)
(Colby on the living room floor in his blow up thing for the pool. It's great now that he can sit up. It's fun to put him in things or allow him to sit up and look around.)
(There was a time when he swam inside of his bumbo. Now it fits him snugly.)
(Sitting up like a big boy on a bench with mommy.)
(Tracey, Mom and Ron.)(The family.)

Here are some pictures from the Cape. We had a great summer with a couple trips to Maine and now even a week at the Cape. Colby took his first trip to the ocean beach yesterday. Tracey kept him in the bjorn and he was fine.

Every so often I look back in my e-mail to the e-mails I was sending out before I created the blog. I read the e-mail from one year ago today. We were obviously still pregnant, still on bedrest and ow so very tired. Tracey's contractions had strengthened and we were continuing to count the days of staying pregnant.

It's neat sometimes to look back at times that were difficult and see how you made it through. It puts things in perspective a bit. We would never had thought that the pregnancy would have taken this turn, or that Avery would have passed away, or that Colby would have so many issues......or that Colby would be doing so well now just one day shy of turning one! He's an absolute joy and it's wonderful to watch him grow and blossom.

Everyone that follows his story is part of his journey. Thank you all again for your interest, caring and support.

Two more days until Colby's Birthday!

2008-08-25T07:34:00.002-04:00

Wow, how time flies!!! I can't believe there's only two more days until Colby's Birthday! I guess because he didn't come home until he was 4 months old, then things have been so busy with doctors and all, and lastly, I guess because developmentally he's around 7 months, it just doesn't seem like he's going to be one!!!

We're out at the Cape this week. Colby is doing so well. I don't know if it's just me or not but I think he's doing his eye thing a little less. He's starting to reach for things, bending over and stretching his arms out in front of him to try to get at things. Especially if you have him on your lap and are doing something, he's starting to become a handful. Or if you have him in his bumbo, in months past you could just tend to your things and know that he'd be sitting there peacefully. Now you need to make sure he can't get into anything. It doesn't bother us one bit though, this is the kind of think that we want him to do!

He's really starting to respond vocally too. Sometimes he'll repeat "ma ma ma" or "ba ba ba". It's so cute because it seems like he takes a big breath and works hard to coordinate himself enough to make the sound.

I'll try to take some pictures and post them in the next day or so.

Pictures, pictures, pictures

2008-08-14T21:01:00.008-04:00

(Colby's first boat ride....light seems to trigger his eye thing, so we had a hard time with him being out on the lake.)

(It's funny because Colby seems to really watch us when we're on our laptops. He'll try to reach for the keys or the screen too. Here Evan was on Tracey's laptop and Colby had one of his toys. It seemed like Colby was hard at work on his make believe laptop.)

(Evan showing off one of his catches)
(Colby's first look at a lobster....or should I say...lobstah)

(Maine wildlife)

(The boys talking on the back of the boat during one of our fishing trips....guess the fish weren't biting given the fact that both their poles are laying in the boat.)
(Colby after a bath)
(Colby will watch us as we eat things. Sometime he'll even get his mouth going or open it wide as we put food in our mouths. We figured we'd let him try some different things....one being a lemon)
(Surprisingly, he didn't seem to mind the lemon at all and kept opening his mouth for more!)

(The "Reed boys" at camp)

Eye doctor appointment

2008-08-12T07:15:00.007-04:00

(Colby and mommy down at the lake)
(Colby says "Mommy likes to read me books before I go to bed")

(Colby and I yesterday morning) (We've been trying to work with Colby to help him hold his bottle. Tracey seems to have better luck than I. Here she got him to hold it for a minute or two.)
(Evan and his friend Jeremy out in the kayaks the other day)(Jeremy and a little small mouth bass he caught. Nice job Jeremy!)

(And of course...the star of the show.....the Colbyster...sitting up all by himself. Tracey and I love him in his PJ's. They're just such a little kid thing.)

We finally got an appointment with the eye specialist on August 28th. Hopefully they'll be able to shed some light on what's going on with Colby's eyes.

He's been doing very well up at camp. He had a really runny nose, runny eyes, sneezing and all yesterday. We thought he was getting his first cold. But later in the day it seemed to get better and this morning, as I sit here on the couch with him, he's doing fine. Just sucking away on his pacifier and playing with one of his toys. He's a very content boy. He loves to get attention....what baby doesn't. But he's happy-go-lucky 90% of the time.

Colby's really been experimenting with his voice the last couple weeks. I just love to hear him babbling away. Sometimes it seems that he's responding to us if we say "Ba-ba-ba-ba-ba" he'll repeat it. Tracey put him in his Bjorn and brought him down to the water. It was neat because he babbled most of the way down and then continued when they were down there. He's also doing awesome with reaching towards things and grabbing them. His motor skills are getting better too. He's grabbing at his feet and is much more accurate with his hands. He still does this thing with his hands when he grabs things....he opens and closes his hand, over and over. I asked the woman from Birth to Three and she said it's an immature grabbing reflex. Colby's just about a year old and yes, he's behind on a lot of things. But as long as he continues to show progress, then we can't ask for anything else.

We're enjoying our time up at camp. It's been somewhat cloudy. But in some ways it makes it nice and mellow. Evan brought a friend up with him, so that keeps him busy. The boys spend a lot of time at the lake fishing, paddling around in the kayaks or messing around down in their room. I've brought them out in the boat a couple times and we tied into some bass. They've been fishing off the dock at night and catching eels and even a catfish. I've been coming up to this lake for....well...must be about 33 years now and never caught a catfish. So it was neat to hear that they're in the lake.

It's neat to see Evan growing up here. He's been coming for the last 10 years or so. Just a couple years ago he wouldn't be caught dead down at the water at night. Too many noises in the woods and all. Now he'll head down at night, head down the road and explore some of the rivers that feed the lake, head out on the lake in the kayak.....he's a growing boy. Next year he'll be old enough to drive !!! YIKES!!!

We come up here with friends but come up once every summer as the "family" trip with my dad and stepmom. I was looking at the pictures from last year. We came earlier in the year last year and Tracey was still pregnant with the twins. Below are a couple pics from last year.

(Evan and Tracey fishing off the boat last summer)(Evan and his friend Zack last summer with some white perch they caught last summer)(My lovely wife, all preggo and fishing last summer)(Tracey and I last summer. Boy, if we only knew what was going to happen in a couple weeks...)

I can't wait to see Colby grow up here too.

Quick update from camp

2008-08-10T07:12:00.004-04:00

(He's a good eater!)
(Colby and grandpa playing on the floor at camp)

First of all, I've gotten to know another couple down in Florida who have gone through a very similar situation that we did. They were pregnant with twins, the twins came very early, their son Luke passed away and their daughter, Makenzie, has been in the NICU for months. Little Makenzie came home just under 5 pounds this past Friday. So please join me in congratulating Rick and Tiffany on bringing their daughter home!!!

We're still waiting to get an appointment with Colby's eye doctor. As you can imagine, I've been searching up and down on the Internet trying to find out what might be happening to Colby's eyes and I don't really see anything that clearly states what it might be. So we'll just go through the paces and head to the eye doctor to see what he/she has to say.

Friday morning, Colby and I were running errands trying to get ready for us to leave to come to Maine once Tracey got out of work. One thing we needed to do is get the oil changed in the van. So we were sitting in the waiting room at Jiffy Lube or some place like that and I had Colby on my lap. There were a number of people in the waiting room with us. There was a guy and his son sitting across from us. The guy's probably in his 40's and the son, maybe around 15 or so. The guy was watching Colby for a couple minutes and then says "He's got a VP shunt, huh?". I replied that he does and asked how he know about it. Long story short, his son that was sitting next to him was born 10 weeks early some 15 years ago, had a bilateral level 4 brain bleed, was shunted with a couple revisions, but was sitting right next to him, happy as could be. I talked to the two of them a bit and it seemed like things were going pretty well for his son. I didn't want to pry too much about if the boy had any challenges, but just to see that he was out and about, living a good life and being seemingly "normal" made my day.

It's hard sometimes because although I want to be optimistic, I'm also realistic. At least for me it's easier to say that Colby is doing very well given what he's had to deal with than to try to say that he'll be fine one day and we'll never know what he went through. If that does happen, I'll be totally psyched. But if I try to think that way, envision him growing older without and complications and then the day comes that he does end up with something, I'd be crushed. I'd rather say that he's going to be fine, no matter what the outcome and hopefully he will have very little if any noticeable side affects from his premature birth. It's just the way I prefer to process things I guess.

Anyway, I'm going to get this posted and start my day. It's supposed to be pretty rainy weather up here over the next couple days so I'll more than likely end up taking a bunch of pictures and post them.

So to see someone who apparently had a worse brain bleed than Colby and doing so well really made my day.

He said, she said

2008-08-05T20:34:00.002-04:00

Tracey and I didn't sleep well last night. I think part of it was that we had today's appt on our minds. I have a lot going on at work too .... all good stuff but busy none the less, I'm dragging butt tonight.
The neurosurgeon had told us that he though Colby's eye movement was seizure activity. He said that we would need to be referred to a neurologist and that's what started us down this latest chapter of our journey.
So today was our appointment with the neurologist. All went well. She said that the EEG shows that his eye thing isn't seizures and that there weren't any signs of epileptic activity. So that's good. We felt relieved but it also left us hanging wondering what it was that was affecting Colby's eyes. She said it may be more of a muscle spasm in the eyes and recommended we see a pediatric eye specialist. We've already seen one regarding his ROP so we're going to make another appointment with them.
She said that all in all Colby seemed to be looking good. His EEG was abnormal showing that some of his brain activity was a bit slower than normal. Also that the two sides of his brain weren't quite working in conjunction with one another. But she continued to say that this is quite common in babies who had blood in their brain or for young babies. Although Colby is almost one, he's functioning like a 7 month old and the doctor commented that the results were about par for a 7 month old.
So that's where we stand. No final answers but at least a new direction to follow. We'll need a referral from his primary care doctor andt then will need to set an appointment. As the details come, I'll pass them along.

Neurologist, Tuesday, 3:30pm

2008-08-04T20:39:00.002-04:00

We finally nailed down an appointment with the Neurologist...tomorrow at 3:30. I'll post what we find tomorrow.

Backyard Wildlife and an appointment with the Neurologist

2008-07-31T16:49:00.002-04:00

(The doe was actually chewing in this picture but it looks like she's talking or surprised at something.)

I know that for many people, seeing a deer isn't all that interesting. But I know there's a number of people with kids who follow the blog and also some people from areas where there just aren't deer wandering all over the place. So this morning when I saw a deer in our back yard, I figured I'd snap a couple shots and post them.
As I mentioned in the earlier post, we were going to pressure the doctors to move forward with seeing and hopefully treating Colby's seizures. At first Yale said they didn't get the fax from Colby's Neurosurgeon. So they refaxed it, and refaxed it and still Yale says "nope, didn't get anything." Well, Tracey apparently let them know a little about how she felt and miraculously, they found the fax to get Colby referred to Yale. They said they'd call back and let us know when we could bring him. A little bit later and Tracey called me in the office to say Yale could see him........on January 8th, 2009! Can you believe it!?? That just seems totally screwy!!!! Tracey then called the neurosurgeon and told him a little about how she felt and we now have an appointment NEXT WEEK (though we don't yet know the day) right at CCMC. The whole medical system drives me absolutely nuts sometimes.
So, it's a step in the right direction. Once we get more specific information, i.e. the day and time, I'll let everyone know.

Colby & Hannah

2008-07-31T08:14:00.004-04:00

(Colby says "Um...Mary....would it be OK if I ...um....touch Hannah's arm?"
(Colby says "Wow Hannah, I just LOVE your arm!!!! So...beautiful!" Hannah was awesome with him...very patient and like playing with his toys. Thank you for having us over, Randy, Mary and Hannah

I mentioned a couple weeks back that we went to visit my cousin Randy and Mary and their little cutie Hannah. Here are some pics from that visit. Thanks for sending them along Mary !

Still no word from the doctors about Colby's EEG. We've been plenty patient. Starting today we're going to start bugging them to get things rolling more quickly. We hate to see Colby having the seizures. They're certainly not as bad as some seizures can be, but it's still affecting our little boy and we want to address it. Whenever we're trying to work with Colby, be it helping him grab things, push up from his belly....anything, he has the seizures. I have to think that if you or I were trying to concentrate on something and our eyes kept rolling to the bottom of our heads that it would distract and affect us. Having said this though, Colby is a very happy and content little boy. The seizures don't seem to bother him one bit and that's a good thing.

Thank you "A" for sending the suggestion about using a towel to help Colby lift his body up. I bought that roller thing I was telling you about last week, but it's bigger than Colby's whole body. However, if I roll up a both towel it fits perfectly......now we just have to keep working with the Colbster! LOL He's getting stronger and can certainly push himself up. But he'd almost prefer to lay his little head down and suck on his fingers. All in time....

Thank you guys for your comments !!!! I love reading them and to hear feedback. I can see from the counter that plenty of people are looking at his blog, but I have no clue who everyone is. So keep the comments coming.

Colby has a relatively busy day today. I have to work but Tracey has arranged to go see a puppet show with him and then to a kid's sing along thing. She's wonderful with planning things to do both with Evan and now with Colby. I'm more of a "wake up in the morning and figure out what the hell we're going to do today" kinda guy. Yup, drives her nuts sometimes but hey, we're each our own person and that's what relationships are all about.

I've been sitting on the couch at home, doing some work and nibbling away at this posting for well over 45 minutes now. All along Colby has been in his jumper just as happy as can be. Trying to figure out what all the little toys are around him and making all kinds of sounds. Some sounds he makes just with his mouth and others with half of his hand in his mouth and you get a slimy raspberry sound. I can't wait for the day when he starts to talk!

Our happy little boy

2008-07-30T08:55:00.004-04:00

And here's Colby jibber-jabbering away.

A quick video

2008-07-29T14:06:00.004-04:00

Although this video may not seem like much to some people, things are in a much different perspective when your child's future is uncertain. Each little "normal" thing he does is a victory for us. In the last couple weeks he's been reaching while lying on his back. He won't quite roll from back to belly, but this is the next step to get him there. He'll get onto his side and then flop back onto his back.
We're optimistic about Colby's future. The doctors have been very pleased with his progress when compared to other children with a level 3 brain bleed and hydrocephalus.
I do what I can to read up on his conditions and it seems that most people with a grade 3 brain bleed are very delayed and have some sort of life long affect. But we'll continue to work with him and help him do all that he's able to.
Tomorrow's video will be of him finding his voice. He's so cute when he just lies there and talks to himself. He's definitely found the "B" consonant sound. He'll also do the "G" sound. He won't do it in correlation to anything yet, but just the fact that he's figuring out what sounds he can make is a cool thing to watch.

11 months old!

2008-07-28T19:22:00.004-04:00

Wow, as of yesterday, Colby is 11 months old! Less than a month now and the Colbster will be the big.......One.
He was a crank pot today. I love him to death but when I'm tired and he's tired....yeah, babies can loose just a smudge of cuteness when you're tired to begin with and then they're tired and cranky and they cry...and cry.....and cry for no apparent reason. I'm sure they're just trying to tell us what's happening. Today he was cranky and no matter what we did, he'd just fuss. I think he's just tired. Don't know. He'll get a good night's sleep, so will and I tomorrow will be a different day.
We're still waiting to hear something from the EEG. Hopefully sometime this week.
I took some video and broke it up into a couple of small movies. I'll post one every day or so. The first is of our boy eating his dinner. He's a VERY GOOD eater!!! Especially his fruit and cereal. Don't you love how it looks like he's chewing! He's like a little bird. He'll open his mouth and wait for you to scoop some fruit in. You can see his seizures a bit in the film. They do seem to happen a bit more when he's eating from the spoon. Not so much when he's eating from the bottle. Again, hopefully this week will shed some light into this.

Just some pics

2008-07-26T16:36:00.005-04:00

(Colby has figured out he's got a tongue and has been sticking it out a lot lately. )

(Colby and mommy)
(I love my boy!!)
(Colby and daddy)

(Our friend Celeste rented a house on a lake here in CT and invited us over last night. Our friends Liz and Chris went with their little girl, Caitlin. Colby did great until he got tired. We had a hard time getting him down but hey...that's all part of parenting. : ))
(Colby says "Ow...um.....yeah....that's my eye."
(Colby, Caitin and Celeste's son, Holden.)

Colby and Avery's Story

Forever changing....but still the same.

"Daddy, I'm a big boy now...cause I'm four!"

Getting big!

Big steps!

Little Chatterbox

Pictures from Christmas

Colby and Daddy walking

CVS, more than a drugstore

Happy 2nd Birthday Colby!

Last day of being One

Rise 'n shine

No news is...good news?

Familiar places

Colby and Avery

Our growing boy

Trip to Cape, July 2009

Watch out ladies....

Colby vs the flu

Colby and Hamilton Playing Ball

Finally, some videos

Quick pics

Happy Mother's Day mommy!

A warm spring day

Just some pics...enjoying the spring weather

Fevers, boogers, teeth and talking

Just milk please

Doctor's Appointment

Feelin' better

Before...and after

Starting him young...

Some more clips

Sunday mornings.....

Been a while....

Another quick video

Some Quick Pics

Quick video

Quick update

Silly little boy.....

Welcome back home Colby!

He's back...

Would you like an extra night's stay?

Ups and downs

Day 3

Ventricles, hydrocephalus and shunts: 101

Premature evaluation?

Wait long enough....

CAT Scan results & back to the OR

Another Christmas in the Hospital

Merry Christmas!

Happy Birthday Mommy

Love Sunday Mornings

...and a couple more things...

Colby's home and doing well

Update from Colby's hospital room

Sick little guy

Just some pics

Four Teeth !!!

Some thoughts....

Some pics

More videos, Colby trying to crawl and then playing with daddy

Some videos

Colby's new glasses

Our little cowboy

Apple Orchard Visit

Putting things in perspective

Mr Fussy

Too long

Quick update

The Farmer's Market

Just some pics

Tiny Fingers

More milestones!

Update on Colby's "eye thing"

A Visitor from Chile

Video of Colby talking

Colby's B-day Party

Colby's Big Day !!!

Heading home

Happy Birthday Colby