Age 6...another wonderful year for Colby

Colby has had a wonderful year!  So much continues to change with him...new school, growing, overcoming more challenges and doing things that I wasn't sure he would ever do. 
He has now transitioned to Kindergarten in the town in Glastonbury.  The school has been wonderful in working with both his challenges and his head aches.  They allow him to go down to the nurses office and lay down when he gets head aches.  They have also assigned a para to be with him most of the day to help him with his daily activities.  He has also transitioned off of Special Ed and onto a 504 plan.  At least that's the situation now.  The school has recently told us that they believe he could benefit from more PT and that they might need to move him back to Special Ed in order to get him what he needs.  If that's the case, it's fine with me.
  We were at a school function the other evening and it warmed my heart to see so many kids, both his age and older, recognizing him, coming up to him to give him high-fives or hugs. 
  Colby also played soccer this fall!  It was with a special ed team that offers children with a wide range of challenges the opportunity to get together and play to whatever level their abilities allow.  Colby seems to be a bit unique because mentally, his is "there".  But his little body doesn't quite allow him to keep up with kids his age.  He doesn't have any depth perception and that plays a role in his balance and ability to maneuver around.  He also has a unique gate when he runs.....all of which makes him the special boy that he is.  : )


Last fall, Colby was still pretty uneasy on his feet.  He was also still on a drug called periactin which is used to treat seizures.  The doctors though this might help lessen his migraines.  We had some scary times when we received calls from his school or daycare saying that he had a migraine, started crying and then was "out of it", at times peeing himself or becoming partially paralyzed (one side of the body or the other becoming limp).  Tracey and I rarely saw this.  By the time we would arrive to get him, he would usually be somewhat with it and his muscle tone would be back...not normal, but he could at least hold himself up or squeeze our had gently.  It's scary when your child goes though something like that.  We brought him to his neurosurgeon and to a neurologist.  The thought was that possibly he was having some kind of seizure.   

They did an EEG on him and tried to induce a seizure while monitoring his brain activity.  The doctor said that although the EEG did show activity that was not quite "normal", it was not seizure activity.  We also visited with the gastroentranologist.  Because of the total randomness of Colby's episodes, they ruled out Cyclic Vomiting Syndrome which he had previously been diagnosed with  abnormal activity, it was not a seizure.  Colby then saw his gastroenterologist who diagnosed him with Cyclic Vomiting Syndrome (CVS) some 4 or 5 years ago.  They said that now because of the total randomness of his episodes, that this was not CVS.  Good to have one thing off of his charts...but wish we could put our finger on what was triggering his episodes and figure out a way to help him.  We asked his neurologist that if it was not a seizure that he was having, could we take him off of the periactin as it made him sleepy.  They agreed.  And this made a difference in our little boy

Colby did have  rough patch earlier this year when his shunt that used to drain into his belly malfunctioned.  His bacterial fluid was being absorbed within his belly where the shunt drained.  But for whatever reason, it stopped being absorbed and his belly began to expand.  We thought he was just constipated.  But as his stomach grew and grew....and grew, we knew there had to be something else going on.  After an ultrasound it was determined that there was a lot of fluid in his belly area that needed to be drained.  Once the doctors got in there to take care of things, they found out that the fluid had gotten infected and he spent a good couple days in the ICU with his shunt draining externally.  After trying to put it back into his belly only to find that his body was no longer absorbing the fluid, they had to resort to draining his shunt into the atrium of his heart.  I was very nervous about this, but after talking to the doctor about any other possible options, this was really the only way to go for now.  We are now about 8 months since his last revision and things are going smoothly.  
  He continues to have migraines.  Most of the times they are almost more of a neusance to him than anything else.  He will  need to lie down, sometimes just for a couple minutes, sometimes for a while falling into a deep sleep.  And every once in a while, they will hit him hard.  When he gets bad ones, they look like a seizure or a stroke, leaving his partially paralyzed, taking away muscle tone is parts or all of his body, slurring his speech and making his eyes shake.  It's scary as a parent to watch your child go through this.  And there's really nothing we can do other than comfort him, document what we can and then let the doctors know.  He is often left lethargic and tired for the rest of the day, but they pops back to life by days end or the following morning at the latest.  He continues to see specialists in an attempt to minimize the frequency and affect of these episodes.
  All of the medical stuff aside, Colby is doing AWESOME!!!  He amazes me with his memory, his sweetness, his ability to overcome hurdles to do things that you and I take for granted.  Thank you Colby Reed for being the strong little boy that you are!

   Colby sledding with Betsy and Eli...January 2013

  

(Colby working with daddy and visiting Betsy at her work in the hospital)

(Colby getting monitored for seizures......Dr said no signs of any seizure activity!)

 (Colby checking out his tubes while in the hospital)

(Colby and mom making the best of things while in the hospital)

(Colby's Preschool graduation)

 

 (Colby doing a kids race in Glastonbury.  Spring 2013)

                          (Colby and Grandma Carole fishing during her visit to CT.  Spring 2013)

(Colby doing his first mud race with dad!  Merrill Down n Dirty in Hartford, CT.  Summer 2013)

(Colby camping with mom.  Summer 2013)

(The Reed boys.  Summer 2013)

(Colby singing karaoke (Gang Man Style if I recall correctly) at a 4th of July cookout)

 

(Colby playing TOPS Soccer.  Summer 2013)

(Colby's first day of going on the bus!!)

(I was absolutely thrilled to see Colby climbing this water slide all by himself!!!  He may not be as quick as some of his peers...but he can do it!!!)

Poem for Dads who have lost a child......

Someone very special passed this along to me.  Loosing anyone close to you takes it's toll and continues to affect you for as long as you remember the experience.  But loosing a child and in some ways trying to stay strong and hold yourself together is something I think many dads do. Nobody asks dads to play this role and it in no way diminishes the support, strength and sorrow of mothers who have lost a child.  I've seen a lot of poems to address the experience either from a mother's perspective or from a generic parental role.  But this is the first I've seen that speaks to a father and they way he may feel.  I hope this in some way connects with other dads who might be able to relate.  This poem really struck a chord in me for many reasons and I just had to share. 

Five years old now.

  Five years ago today Colby and Avery were born.  The future was unknown, unsettling and at times a bit scary.  The weeks that followed their birth were extremely hard.  Avery's passing was numbing at the time and impacts me to this day.  Colby's challenges throughout the years have changed our lives. Yet through it all, there was one constant.....a strong little boy with the willpower to survive, the determination to overcome and to spirit to impact those whose paths he's crossed.


  This past year has been a wonderful year for Colby. He has adapted well to his mom and dad being divorced, having two houses and a change in routine.  The school remarked that had they not been told of the change in Colby's life, they probably wouldn't have known.
  He continues to conquer challenges.  He can now move pretty quickly up the stairs and step off of small steps on his own.  He loves to ride his hot wheels, has his letters mastered and is working on spellling.  He will repeat preschool this year to allow him a little more time to get stronger on his feet and continue to catch up to his peers.
  His gait has always been a bit different.  Within the past 6 months, he has started to run.  It's his own style, his own speed and yes, it's still a bit unsteady.  But now he prefers to "run" at just about any chance he can get, always challenging me to a race from the car to our front door, from the living room to the bathroom......just about anywhere he can.

  A couple months ago, he participated in a children's race.  It was a simple loop around a high school track.  He lined up with other children his age.  The gun when off and he stood there are first, not knowing what to do.  The other children all took off down the track.  I stood next to him and told him it was time to go. His eyes got big and he quickly replied "Oh! OK!  Let's go daddy! Come on!" and off we went, his arms flying about and his feet shuffling quickly down the track.  He was 100% focused at the task at hand...to run his first official race.   Colby was watching the track so intently as not to trip or stumble that he really wasn't paying attention to what was happening around him.  As Colby and I rounded the the end of the first corner, I looked across the field to see the group of children making their way to the finish line.  Colby was breathing heavy, his cheeks were red, his pace had slowed and he started to stumble and swerve.  I told him it was OK to walk and catch his breath but he wasn't listening to that.  A minute later he looked up and noticed that there weren't any other children around us.  We were alone on the track as we made
our way along the back straight away.  At first I my heart sunk, thinking he would be heartbroken to realize that the other children were so far ahead of us. But his perception was quite different.  He let out a strained giggle, looked up at me and said "Look daddy!  We're winning!!!!"  With renewed sense of motivation, he picked up the pace, breathing heavily and swerving down the track.  As we made it towards the finish, I heard the announcer say "Wait, there's another runner on the track!"  People came back to the finish line and cheered Colby through the end of his first race.  He received a medal as did all the other finishers before him, but to him this signified that he won his race!

  I think that's a classic example of who Colby is.  He's a fighter.  He is motivated.  Sometimes he's not sure of how it all works, where he should go or what to do, but with a little help, he's off and running.  And although he may finish things at a different pace than others, his is a winner....in his mind and in mine.

  My life with Colby marches to a bit slower pace than other parents of 5 years olds.  But the past five years have reinforced the belief that sometimes you cannot change what has happened, you can only affect how you react and what you make of it.  Do it right and things can actually turn out pretty good.  It's also solidified the belief that you should be thankful for all that you have, not taking anything in your life for granted. 

  Thank you Colby Nichols Reed for all that you've brought into our lives...into my life.  Thank you for the joy you've shared and the lessons you have taught me. You are a very strong, intelligent and inspiring little boy.  You have overcome so much and have an amazing future ahead of you.  I hope you read this some day and realize the impact you have had on me.  Happy Birthday Colby!

                                                            

Forever changing....but still the same.

(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!"

(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!

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!

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.