This site is for information, support and questions for any parent of a child missing digits.

Welcome to the wonderful world of being a parent to a child born not whole, but still so very perfect. The life of a child born or with an aquired limb difference is a path that is full of ups and downs.

I am a very fortunate Mom to a son born in 2003 with bilateral symbractydactyly (his right thumb is his only complete digit). He also has clinodactyly of both pinkies. He was diagnosed while I was still pregnant, but that didn't make the journey any more easy.

Monday, May 31, 2010

Well the time has come---tomorrow! Just a heads up that I may not be updating for a little while. I am undergoing yet another surgery. Some of my readers know, but for those that don't, back in January 1987, when I was 9 years old, my dad and I went to Edmonton Oilers vs Calgary Flames hockey game. During one point in the game, Paul Coffey was deflecting a shot from the Flames and the puck flew into the stands. I was happily eating my nachos and cheese, when my dad shouted "heads up!" to me. I snapped my head up, not sure where I was looking & that was one of the last memories of before the accident.

My Heads Up resulted in me catching our family's very first NHL hockey puck. No, it wasn't the way that any family wishes it to happen though. I caught it all right, right in the face, underneath my right eye. I was rushed to the hospital and suffered from a broken eye socket, cheekbone, and a couple of other broken bones.

I don't want to get too much into it, as afterall, this is Mikey's blog, but I thought I owed an explanation as to where I will be. I am going in for another revision procedure--which periodically I will have to continue doing every few years. I know that it was an accident and that Mr Coffey didn't pick me out of crowd, but I do wonder if he ever wondered what happened to the little nine year old girl who's life he drastically changed forever (and not in a very good way unfortunatly).

Please think of Mikey and his favorite older brother Liam while I am recovering. I hate when they see me go through this. I greatly appreciate your patience while I am away and I promise to have wonderful Mikey updates when I am back in action!

Till then...

ETA: There has been a last minute change of plans. I just found out that my surgery has been postponed for one week. So on June 8th, let's try this again!!

Tuesday, May 18, 2010

You might notice that I've been (slowly) working on adding links to Mikey's page. One of them that holds a very special place in my heart is for the X Finger. From their main website page, Didrick Medical, this is an incredible explaination of this most needed advancement:
"The X-Finger® is the world’s first active-function artificial finger assembly designed specifically for partial finger amputees.".

I came across the X Finger by sheer luck. Mikey and I were at the 2009 War Amps seminar and in one of our meeting groups with other kids with a similar defect to Mikey's, one mom mentioned the X Finger. I was completely absorbed in learning more, because at this point, there is no form of functioning prosthetic fingers. I shot off an email to "the company" just to inquire more information. Since that July, I have been honored to call Dan Didrick my friend. At this point however, X Finger is not available for pediatric patients. But...Dan has made it a personal goal to see that this changes! You need to check out the website (also linked to the picture on the left side bar), or by clicking here -> http://www.didrickmedical.com/didrick/ . Dan and his crew were also the first place winners in The Perfect Pitch 2009! Currently they are working on securing funding & I am so very hopeful that everyone will see the need for this. As a mom to a bilateral symby child, being told that really there is no option by means of prosthetics is very heartbreaking. Especially when you don't know how your child's function will be. Yes, we are very blessed that even with the severity of Mikey's defect he is very highly functioning and at this point has never had a fine motor skill delay, we also know that there are certain things that may arise that could change this for him.

Please, take the time to just visit Didrick Medical's site, I am more than sure that you will be impressed.

Till next time...

Friday, May 14, 2010

It is so very hard for me to admit my emotions and sadness when it comes to Mikey's disabilities. Yes, he is legally considered disabled. I do not consider him disabled. He is able to do anything and everything. Except wear gloves. Any kind of glove. Most of my friends will remember the horribly upsetting expereince we had this past winter. Mikey needed mittens--we get VERY cold waaay up here! He wanted army mitts. Well, he wanted army mitts, but after "persuading" him that mittens would keep his hands warmer (I really don't think that fully grasps the "severerity" of his defects). He agreed. We found the perfect pair of army mitts. The helpful salesgirl said oh we've got lots of sizes and styles--"how old is he?" I tell her "he's nearly 6". "oh good!" she brings us a 6 year old size. Right away, before Mikey even saw she had them, I told her that I was sorry, but they wouldn't work. "Oh but these are for his age range". Ok, but they won't work. Trust me. They won't work. At this point Mikey sees the mitts and takes one from her. She STILL didn't get that I really didn't need her help.

Then she sees. She realizes. Then, here it comes...I just know the exact moment THAT LOOK is coming on. The mouth drop open, the eyes enlarge to size of dinner plates. SHOCK--see, THAT'S why THOSE MITTS WON'T WORK. Mikey starts crying--something he has NEVER done in public. "Why don't anything fit my little hands Mommy". At that moment, the sound of my heart shattering into a thousand itty bitty pieces was clearly audible. Right alongside the heartbreaking cry of my precious little PERFECT boy.

So, what's a Mom to do? Go to the next department store and look. But not before heading down the toy isle to find a suitable distraction because the place we are going, needs to go unnoticed by my super smart little man. Thank you Lightning McQueen, you've helped me in many a crisis. It's now do or don't time (insert duh duh duh piano sound effect here) I put on my super sneacky mom hat and manouver to the infant side (going through the "big boy" isle first of course). I park his cart and Mikey in all his McQueen glory can not see where I'm looking....the infant isle. Yes. I find a pair of mitts, not army, but really there is no selection for infants aside from pink, blue or different blue. Hmmmm which will it be? Size? 24 months--yes infant mitts. They didn't fit. They are too big. Hear that crash? That's just another piece of my heart falling. I find another blue and give 'em a go. They fit--mostly. I mean really why do you need all that material where fingers are supposed to go? Anyhow, success finally. The size 12 months. And yes, a little big. I can never explain the feeling of buying your perfect 6 year old a pair of 6-12 BABY mitts.

I need to learn to knit. I have a most wonderful online friend and all because of her, Mikey did get his knitted army mitts. for this season She even made them 'specially for Mikey--we made outlines of both his hands, sent perfect Nat some army yarn, a few weeks later, it was Christmas for Mikey!! Mikey got his army mitts!!! And they are not infant mitts--they are big boy army mitts! I will forever have a place in my heart for Nat, I can not explain the emotions of receiving something everyone may think is "just a pair of mitts". They are Mikey's special fit army mitts and although they won't fit him next year, we will be holding onto those mitts forever and a day. Mikey had real mitts.

On that note, I need to get a move on. Work work work....Till next time.

Wednesday, May 5, 2010


My main goal for this Symby Site is help bring awareness for other parents who are in a similar situation. But, I am so not computer saavy and if anyone has any pointers/tips for me, I would take them all with great relish!

I would also like to know how everyone with a fancy blogger is able to put on the nice backgrounds--not the generic blogger ones. Hints anyone?!!!

I do have other blogs, but they are full of my nonsense chatter over nothing very exciting! I know this site too is very bare and still in the early stages, but if any of you are able to help me spread the word about it, I would be forever in your debt.

I am also hoping to not turn it into a blog about Mikey directly. I would like to be able to share his stories, pictures etc, but I also want it to be informative.

I still haven't had a chance to upload more pictures and videos because work has been very busy (we are moving hospitals next Wednesday) and I am hoping to have more free time after that is done.

Thank you so much for taking the time to visit.