Age: 6 years old today - Happy Birthday Kayden! (Birthdate: March 17, 2009)
Duplication:46,XY,+der(4)t(4;
Lives in: Winnipeg, Manitoba, CANADA
The Early Years
6 years ago today, at 9:35am, March 17, 2009, at 6lbs 6oz, 16.5 inches long, was the moment little Kayden came into our life - screaming. A loud, high pitch scream that would be constant for the next few years - sounding very close to that of a fire truck. I remember one of the Nurses jokingly saying to me “good luck with that”.
We had no warning.
His cute little button nose (opposite of our pointy ones), his droopy eyes, his rocker bottom feet, and of course his scream, which was far from the usual babies cry. He was stiff, so very stiff; his little body was so tight, his fingers tightly clenched in a fist, his short little neck and solid raised shoulders...
And he was beautiful - with those long eyelashes and full head of dark hair like his Dad.
Feeding was not working well - he could latch, but kept constantly throwing up EVERYTHING. Besides the 24hr stress that was soon to become the norm in my life, what I remember most over the first few months, which turned into years, was his eyes - he looked deep into mine screaming “HELP ME!”
He was in so much pain. For the first few weeks he slept a TOTAL of 2 hours within a 24 hour period, and the 22 hours he was awake he was usually screaming. “Colic” and “his Genetic Condition” were some of the explanations Doctor’s had (I have since switched Pediatricians and have a fantastic one now). Other Moms would try to reassure me “oh that’s normal” - I knew it was not.
I felt alone to navigate and figure this out. Within 5 hours of his birth, his Doctor told us something was “wrong” with our son and that he has some type of syndrome. It was 2 months later, our Geneticist told us the closest diagnosis is trisomy 4p, but even that, he said, wasn’t completely accurate - he was one of a kind.
After 10 days in the NICU, we were able to take him home. While there, his skeletal survey showed “normal”, abdominal and heart ultrasounds were “normal”, brain MRI showed no significant abnormality, though head ultrasound showed tiny cysts. Knowing about a syndrome, we were very blessed with all of these results.
Over the next few months and early years, Kayden did not sleep more than 2 hours at a time, then would be up for often 1-2 hours screaming before passing out from exhaustion just to do it all over again. I really don’t know how our little family has survived - though I know my battle for night respite was a huge part. Add on ongoing appointments with Physio, O.T., Speech, Feeding Clinic, Neurology, G.I., Eye Dr., Hearing, Bone Dr., Shriners Hospital, CSS and so many others are now the norm. I’ve lost count with how many hats I have to wear to stay on top of all this. We were told he would not likely live past 8-12 months, and he will continue to prove those Doctors wrong. He is a miracle.
Age 3-6
It was sometime shortly before Kayden’s 3rd Birthday that I started to look into more natural therapies since the regular route was not working for him. Kayden’s Naturopath was a lifechanger - he helped us figure out Kayden’s many allergies and helped me force Kayden’s current Doctors to listen. Kayden’s was in PAIN!! It was not colic or his “condition” - he is deathly allergic to eggs, bananas, peanuts and tree-nuts. He is also intolerant to gluten, dairy, soy, fish, legumes, cats and dogs...that we know of so far. We finally met Kayden’s wonderful G.I. Doctor at the age of 3 and then was also diagnosed with Eosinophilic Esophagitis, brought on by his many allergies, and we finally pinpointed the reason for his excruciating pain since birth. Due to his allergies, feeding is an ongoing challenge to this day. He eats the exact same thing every day now --trying any new food is always a big process and fear moving forward. He is on a very strict homemade diet consisting of oats, quinoa, pears, apples, sweet potato, carrots, bison, squash, spinach and kale. And because he does not know how to chew yet, everything is pureed. He started to self-feed with a spoon at the age of 5, which was a huge celebration! His water is also thickened. It was suggested to have a fundoplication and insert a g-tube early on, and many times since, but I declined over and over as I felt there was more going on we needed to figure out first. And to date, I have no regrets about this. I manage his reflux with his medication, thickness of his food and water, as well as sleeping on a slight incline.
Accomplishments:
Kayden started to walk, in his own way, at the age of 3. He still loves to crawl and scoot on his bum, but is consistently getting more confident on his feet, even though he has no flexion in his ankles. Unsteady but determined, that’s my guy.
Today Kayden is a gorgeous, bright, curious, determined and overall cheerful-hearted 6 year old boy who loves:
Buses
Elevators
Microwaves
Thomas the train
Mr. Potato Head
Water (bathtime, swimming, splash pads - all only if the right temperature ;) )
Disney World and Minnie Mouse
Dogs (though he is allergic)
His favorite blankie
His iPad
Nose kisses
loves Silly sounds
Pinching noses (his way of greeting others)
Being told certain stories
LOVES being praised - definitely his main form of motivation
Multitasking - he is happiest when he has 2 or 3 things going at the same time (music from one toy, a train driving somewhere, then potato head in his hands for example)
He is non-verbal, but knows all his letters (since about age 4) and is able to pronounce many of them. I am “Ma” and Dad is “D” for example. He also knows his numbers, colors, shapes and many other things when asked to point to them. He knows some basic signs, and we are working on different communication apps on his Ipad to help with his communication. He understand many things we say - I’m sure often more than we know.
Over this past year, Kayden has started showing some signs of affection as well - starting with nose kisses for Minnie Mouse (thanks Nana for helping Kayden learn this). He will also give little hugs sometimes when asked, or at least kind of let you hug him. He has started to be sad when Mom or Dad leave, which believe it or not, is a milestone I am grateful for as well - he understands who we are now and what is going on when we leave and misses us. Something most people take for granted. It took Kayden well into age 5 for this to connect.
Over the last few weeks, Kayden has also begun to kind of recognize himself, thanks to a few lovely billboards of Kayden on some of the city busses we see quite often. Kayden is able to say “K” when asked whose picture is on the bus, and also started to point inwards to himself, connecting the two (insert really proud Mama moment here).
Kayden truly reminds us to celebrate the little things.
Hurdles:
Kaydens main challenges to date are:
- feeding
- allergies
- potty training
- sleep - though it has improved over the years, his nights are still very short and often broken with mornings usually start around 4:00 am
- he loves to explore with his mouth and puts everything in it (must be extra careful with this due to his allergies)
- it’s difficult for him to play on his own as he does not understand play, so he requires constant attention, entertaining and teaching of this
- flight risk
- some hitting has begun, mainly just to me and his EA at school
- making friends at school
School and Family life
Kayden is currently in Kindergarten with his same age peers from 9:00am-11:45am. He has a full time EA. The support and therapies from his school are wonderful and I am very thankful for this. In the afternoons and evenings I’m kept on my toes keeping Kayden busy as his attention span is short - but we have fun going for small outings watching busses, going on elevators, escalators, or the childrens museum trains as examples. We do get some respite hours and are so very thankful for her (and the other wonderful girls/guys over the years) which have helped us remain (partially ;) sane and gain strength and patience that is constantly required and being tested.
When asked how having a 4p kiddo affects our family, the answer is we mainly do our own thing, for the most part. It’s hard to interact with other families. I’m not giving up, and will continue to expose Kayden to as much as I can, though it’s never easy.
What do I wish other people understood? How difficult and exhausting it is to meet Kaydens needs 24/7.
How could someone make a difference in me and my child's life?
- By offering to get to know Kayden, spend time with him and us. Make the time for your kids to get to know him as well. It’s hard for him to make and have friends, and we were unable to make any siblings for him. So explain to your child how they can be a good buddy for Kayden and nurture this :)
- It’s hard to say, but maybe to tone down the bragging on how great their kids are at school, hockey, etc. We want to hear about their successes, don’t get me wrong, but please do to keep in mind their audience.
- Possibly offer to help me make Kayden’s food, which is quite the process
- Be patient with us - we may be in survival mode for weeks due to lack of sleep, and other regular challenges with Kayden and not return messages/texts...don’t give up on us, we need you... more than you know.
Kayden is my little miracle. He is bringing us joy, happiness and a level of love unimaginable. Not a moment goes by I am not thankful for him and all he continues to give me and those around him. I love him more than words.... I am so very proud of all his accomplishments and how far he has come during 6 long years...and wouldn’t trade him for the world.
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