Posts

All is Well

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All is Well (orig. published 10.19.12)
We are eight days post-op and Colson is doing amazing. Neurontin continues to be a world changer for our lives as he is handling life SO much better this time around.We were released from the hospital on Monday (a day early yay!) and have been hanging out at my dad's house in Richmond, VA ever since. Colson has one very straight leg in a very red cast and one very bent leg in a very large piece of equipment. And he is doing fantastic. He wanted me to take a picture to show everyone how he can wiggle his toes:

Some of you may know and some may not, but the cost for these operations is making a huge impact on our family. We are having a fundraiser here: http://www.gofundme.com/z67qc if anyone can help that would be amazing! Just one night at the Ronald McDonald house is $20.00 which isn't much, but it really adds up with how long we end up staying there. I'm humbled at the amount of money we have been able to raise, and I'd also like …

A Different Kind of Peace

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A Different Kind of Peace (orig. published 10.11.12)
Here we are again - same room, same hospital, same city. PICU Room 722, Shriner's Hospital for Children, Philadelphia.Only this time, it's different. There is no screaming. There are smiles. There are words and sentences that make sense.I know it has been awhile since I last posted. The weeks following his first lengthening experience were our absolute worst nightmare. Until we were prescribed the wonder drug Neurontin about five weeks in. There was screaming ALL DAY LONG for at least four weeks, then the Neurontin was prescribed and the screaming slowly subsided. At the five week mark our boy was back. Not that he took up much less time than he had been in the BN days (Before Neurontin), but at least he was pleasant to deal with ever since.So here we are again. Today, at 9 am Colson was wheeled away for lengthening surgery on his left leg. It feels like we were just here for the first one back in July. Time, fortunately went…

Surgery 2012 - Day I don't know what day it is anymore

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Surgery 2012 - Day I don't know what day it is anymore(orig. published 7.14.20)
Jailbreak! We have broken free of the PICU! And I get to sleep in a hospital bed tonight. I've never been this excited to sleep in a hospital bed before!
Colson is markedly improved. As predicted. Day three and he always pulls out of his post-anesthesia insensibility. The anger is gone (mostly), he's eating, he's drinking, he's playing with his sister. I'm thrilled we have figured his surgery reactions out. However, after writing this, it's unsettling he's had to go through so many surgeries we actually have any reactions to figure out in the first place.
Colson's ability to take his oral medication is impressive for a 5 year old. He will throw his mini tantrum insisting his leg no longer hurts and he will brood in silence as he comtemplates the consequences of his leg actually continuing to hurt despite his best attempts to suggest otherwise. Eventually he comes around and…

Surgery 2012 - Day Five - The Day After

Surgery 2012 - Day Five - The Day After (orig. published 7.12.12)
I'm not going to lie - today was awful.We slept good last night. Great actually. Woke up at 8 to Dr. VB and another doctor in here talking to me and showing me how to rotate the knob on the tension bar on the fixator. I told them they both looked very awake being as I had been up for all of two minutes when I was instantly deep in the discussion of very complex medical equipment. The "tension bar" has a different name, an official name which eludes me at the moment, but it does sound like some sort of sailing equipment. I'll have to ask - preferably not two minutes after I wake up tomorrow.Colson's sedative was turned off today about 9 am, and right on cue, two hours later, he was a mess. We endured hours, literally hours of "Someone please help me!" and "Please help me please!" and "I don't want to walk anymore" and "I wish I never had my surgery and never eve…

Surgery 2012 - SURGERY DAY

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Surgery 2012 - SURGERY DAY (orig. published 7.12.12)
As I sit in the parent waiting rooms, or wander around the hospital I have always spent a decent amount of time rethinking our decision for surgery. And it all comes to a head when I see my boy post-op. Ya know what? Things were just fine, he could get around, he moves pretty quick in his wheelchair, he always beat his sister in a race (poor girl would try so hard too). I'll just pick him up always and always I thought. Seeing his pale face, hearing his raspy post-anethesia breathing, watching his heartrate spike if I'm sitting down and he can't find me in the room - breaks my heart. I have to be supportive of his new hardware, I told him he looks great, like a robot and he smiled.
Colson went into pre-op about 8:30 yesterday morning, and of course Dr. van Bosse gave him his purple pen AFTER Colson was doped up with versid. The nurses all just shake their heads because of course, Colson, and all the other kids of Dr. V'…

Surgery 2012 - Day Three!

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Surgery 2012 - Day Three! (orig. published 7.11.12)
Today (Tuesday as this posting is a day late) was our "Water Park" day! We stayed at the Hotel ML in Mt. Laurel, NJ and went to the Coco Key Water Park right next door. Unfortunately, the water park was packed with unruly day care and summer camp children who pushed my children around and cut them off. Additionally, Colson couldn't go down any water slides because they would only allow one person to go at a time, despite his disability. So we packed up after an hour and went to see a Madagascar 3 instead. Colson still had a glorious time swimming, and he throughly enjoyed the movie with headphones one because it was pretty loud ;-).We arrived at the Ronald McDonald House of Southern NJ (Camden, NJ) around 5 pm and were thrilled to have been given the Disney Room. Cayleigh spent a solid 10 minutes jumping on the bed and saying "Mickey!". Colson was just concerned with playing the game of Mouse Trap we found stas…

Surgery 2012 - Day Two

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Surgery 2012 - Day Two (orig. published 7.9.12)
Hello from New Joy-zee!We made it to the Hotel ML in Mt. Laurel, New Jersey around 7 pm tonight and the kids are just itching to get to the waterpark in the morning!We had far less stops today, however, Cayleigh decided a road trip was the perfect time to want to start using the potty - while I'm thrilled she is using the potty, now is not the most convienent time to want to do so.We found Colson the elusive neckroll today, although he hates it around his neck. Good thing it was on clearance. The best part of the day was going through FOUR tunnels in the mountains in Pennsylvania. The children thought we should have the capabilities to instantly create as many more as they demanded, as four tunnels simply are not enough.Short writings tonight, we are going to go for a walk outside the hotel by the pool. Looking forward to tomorrow and swimming all day. Depending on how brave I am feeling tomorrow, I *may* even go down a water slide so…

Surgery 2012 - Day One

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Surgery 2012 - Day One (orig. published 7.8.12)
Well, we made it to Elyria, Ohio. We are still about 8 or 9 hours away from destination one, Mt. Laurel, NJ. We're hoping to get there tomorrow evening, maybe around 7 pm or so.Today was eventful. I'm certain we stopped at every other rest stop between Milwaukee and here, in search of the ever elusive BP gas station (we have gas cards) and the even more elusive children's neckroll (so their little heads won't bobble around if they fall asleep in the car). We finally ran into a Target at ten minutes to 9 near here, and I've never shopped so fast in my life! We found Cayleigh a kitty neckroll. Colson is out of luck, a pink piggy with a pink bow just wasn't cuttin' it for him. So - tomorrow, I anticipate even more rest stop visits as we continue our search for the elusive neckroll.We went through  6 or 7 movies, including a viewing of Megamind twice. We had lots of cookies and perhaps a couple too many french frie…

Eight Days

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Eight Days (orig. published 7.3.12)
Here we go again. Not to sound like a child, but, I don’t wanna go.
Exactly eight days from now, my son is scheduled to begin the best/worst operation he will have to go through so far in his little life. He’s excited. He dreams of walking “just like Cayleigh”. But, to be honest, it’s taking every ounce of willpower I have not to call the hospital and cancel. His favorite time of the year is summer time. And his summer will end in eight days. Phineas and Ferb say there’s 104 days of summer vacation; Colson is holding them to it.
Summer is the only time of the year Colson can get out and be free. The only time he can use his wheelchair and do the things he wants to do, the only time he truly can explore and have races with his sister and “run” around with the neighborhood kids. And his summer is ending in eight days.
And he’s excited.
I have to remember that part. Because for me, it’s heart wrenching to see him in pain, to know that I made this decision a…

PERSPECTIVE - Parenting a child with different abilities

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Perspective - Parenting a child with different abilities(orig. published 11.16.11)
Perspective: noun – the capacity to view things in their true relations or relative importance
Tonight I was privy to a humbling experience, an important reminder on keeping things in perspective. Colson’s greatest upset this evening was his inability to clap his hands. Scratch that, he can clap his hands. Colson was upset because when he claps his hands, he is unable to make any noise (muscle deficiency related to his AMC). Meanwhile, right next to him, his sister Cayleigh’s greatest upset was the fact there are no pink M&M’s in her M&M package (really Mars Chocolate, why AREN’T there any pink M&M’s anyways?)
Their disdain for the moment was equal. Their problems, completely incomparable. Both of them required a one on one conversation with a whole hearted and meaningful explanation regarding their troubles from their wise Mother’s point of view. “Cayleigh, Princess, I know you ado…

Summertime and the Livin' is Easy

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Summertime and the Livin' is Easy (orig. published 9.3.11)
I know it's been awhile, and I apologize. I have decided to return to school (Energy/Environmental Engineering) - and "anything worth doing is worth doing well" - so I'm going full time. Between school, work and tiny activities, we have been very busy! However we have found time to enjoy these few warm summer months while they last and below I will share you some photos from all the fun we've been having.
I am working on a blog worth reading, not just for pictures. Colson has been up to A LOT this summer. Watch for a post laster this week in which I will share with you all he's been accomplishing! You will be amazed, I promise!!
Much love.-J-



Apple Juice with Ice Cubes (Cayleigh turns 2)

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Apple Juice with Ice Cubes - Cayleigh turns 2 (orig. published 7.21.11)
Who would've thought that apple juice with ice cubes would hold so much meaning to me. Who would've thought that apple juice with ice cubes would bring back so many memories in just one single sip. And yet here I sit, drinking apple juice with ice cubes and reflecting on some of the most amazing days of my life.My beautiful daughter Cayleigh Jean turned 2 today. "I 2 Happy Birthday Ladybug Cake!" has been the phrase for today. Her name holds so much meaning - Kay is my mother-in-law, so we have Kay - however, it's spelled as Cay for the Cayman Islands because my grandparents enjoyed going there and it was the first trip I ever took somewhere. Leigh - that's my middle name. Jean - that's my mother's middle name. So there we have it, Cayleigh Jean. Beautiful.Two years ago at this very same time I was laying in my hospital bed, slowly recovering from the C-section, and doing nothing e…