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.

Tuesday, December 7, 2010

December Already!

Today brings us 12 days away from Mikey's 7th birthday! I can not believe that my BABY is turning 7!! He has overcome so much--not only in these 7 years--but from day 1! My, oh my--I am so very proud of his determination and his drive to overcome everything!

The boys had their yearly check-up a little bit ago & both are doing fan-tab-ulous!! Our Pedi; who has been with Mikey since birth, couldn't say enough about how proud he is of Mikey. He was still very happy (and maybe a little suprised) that Mikey is still doing everything without any sort of aid. I love hearing it when we get told "he really is just like any other boy his age"--honestly that is music to my ears!!

There really isn't time right now for me to give a full update, but I promise I will soon.

Thursday, September 9, 2010

Well it sure has been some time since I've had a moment to get online and update! Our summer has been somewhat of a whirlwind--mostly in the good way!

August saw many many changes in the lives of our little family. We sadly had to say good-bye for now to Cloe and Xander, as they had to go back home and ready for school. Both Xander and Mikey started Grade 1 this year (although Mikey is older by nearly a year; I held him back a year to give him a little extra headstart).

I also had my surgeries which is the cause of delay in updating. August 11th I had my revision done for my face and had an unexpected OR towards the end of August for something different :( In any case we all made it through the summer smiling and happy which is the most important thing.

Liam and Mikey began school on Sept 1st and Mikey is so excited to be in school full-time and most importantly, with Liam! This boy sure loves his brother ♥ There has already been a bit of upset with a new boy in Mikey's class (the other boy is brand new to the school). I hate teasing. I loathe it even more when it is my child at the centre of it. It's only a week in and already he's come home 3 days crying. I called his teacher yesterday and they were aware this was going on. Apparently they've spoken to the other little boy & I am happy to say Mikey came home VERY happy and said that "D" was not mean to him!!! Hopefully this is the end of it. It was heartwarming though that when the teasing (which got to the point of "D" pushing Mikey down to the ground on the playground--this after not leaving him alone about his hands) was happening Liam and 3 of his buddies came to Mikey's side and helped him to the playground supervisor. Liam and his friends told Mikey that anytime he has any problems that they would be there for him.

These friends of Liam's are so awesome that they don't see Mikey as Liam's little brother but as a cool little dude with awesome hands :)

August also saw Mikey NOT coming home one afternoon while he was at a neighbours house--they were in the garage planning a suprise that they were all completely unaware I needed more than anything that afternoon (after getting very upsetting news). I got called outside to see my awesome little dude riding his bike WITHOUT training wheels!! Nothing will ever bring joy to me as seeing Mikey cruising on his two-wheels!! Not to mention that he only began riding his bike at the beginning of summer because that's what Xander loves to do--so thanks to my little X he got Mikey riding!! I've got a video but I need to figure out how to upload it. I will treasure that moment forever. He now wants to do nothing but come home from school and ride his bike.

Yesterday after Mikey had his good day at school, he showed me his agenda book and I was suprised with his printing! They need to copy what the teacher writes on the smartboard each afternoon and yesterday it was "join us tomorrow at 5:30 for ice cream". His printing was completely straight and on the line and 100% legible! Holy smokes!! There is nothing wrong with his fine motor skills! I need to upload that picture too, but will do so when I'm at home.

It seems I've written a bit of a novel, and it wasn't even an update of our whole summer--but I must end now and get some work done.

Tuesday, July 13, 2010

Long time no talk! Things have been well. We've had Guy's son with us and aside from a few minor name callings, the three boys have been getting along well! What I am most excited for, is Cloe is coming on Saturday! She is Guy's daughter and I just love her. I wasn't blessed with a daughter of my own and I tell you--having Cloe in my life fills the majority of that void. ♥

I got final confirmation yesterday that Mikey is indeed in the Captial Ex parade to kick off our annual exhibition fair!! We have a meet & greet on the 21st and the parade itself is on the 22nd. Like I mentioned before, Champ kids (from War Amps) need to be six to be on the float & Mikey has been waiting patiently for this day to come!! I am so excited for him!

Last Friday, I was in awe. I met a family (the one who's mom is pregnant & found out her little guy will have a least 1 symby hand when he's born in August) and they have a very very rare familial case of brachydactyly type B (BDB) . This family is INCREDIBLE!! They've traced lineage back to at least maternal grandmother who was affected. The grandmother had 7 children 2 boys 5 girls. All 5 girls were/are affected. The 2 boys are/were not. The mother I met has a 14 year old girl affected and the most sweetest little 8 year old boy also affected. Early and multiple prenatal ultrasounds have shown the newest little boy to at least be unilaterally affected, but Mom's gut tells her it is bilaterally. This was the case with Mikey too. Docs were sure unilaterally, but I knew otherwise. I love mommy instinct.

Although language was a bit of a barrier (they are ESL with Spanish as main language), I had a great talk with this family. The daughter I noticed, was standing mostly, with her hands crossed under her arms. Now, being a 14 year old girl many years ago--I could understand that--I hope that was the case and not she was hiding. Mikey is involunvarily hiding his hands more and more often--moreso his left hand. Anyhow. The little boy ( I will call him M), whom I fell in love with, hugged me and we cried together. I see in his eyes little Mikey. M told me stories of how he hates when his family move because then he has to start all over (with the explainations, stares etc). He said that there is a girl from school this year who was particularly mean and would tease him often. He said though he has one very good friend who sticks up for him and tells the girl to leave M alone. M also said that just thinking about this little girl and what she does to him makes him cry still. My heart breaks so much for him.

M and Mikey played. They played and played. They played DSi. They played ball. They hit me with a ball more than once. They laughed. I saw M throw his head back and really laugh with my little Mikey--Mikey who has a language barrier all of his own and this little boy M would share stories and LAUGH LIKE LITTLE BOYS!!

We've never met another child/adult with Mikey's exact condition. I was so excited to meet another bilateral child & although their conditions are very different (I am so grateful that this family has answers as to why this happened--good ol' genetics) Mikey has a whole family more of people to look up to! M's mom is due on August 5th. I ask for kind thoughts & prayers that her labour and birth is uncomplicated and their new little guy is born happy, healthy & perfect! I can't wait to meet him!

After we were running so late for our equipment trial because Mikey was playing too much(!) we ran to our electronic meeting. We tried out only a few different options because we are waiting for actual appointment which will hopefully happen before Grade 1 starts. Mikey got to bring home an "Alphasmart" to trial for the summer. He's used this somewhat in class & although this tool is for more short-term usage, this will be a fun way to get him used to typing. He can use a regular keyboard, so unless his range of motion decreases I am thinking we will be able to avoid a one-handed keyboard. The tech and I also discussed iTouch and iPad, but obviously they are not very durable when it comes to children and though he'd be able to use one at home, I will not purchase him something like that until he is out of the "little boy phase"--mind you, I've just somehow managed to break the screen on my new touch cell phone so it could be that he takes after Mom and NEVER outgrows that!!

Well, time to get back to the "real world"! Talk to you soon.

(oh and suprise suprise, my surgery's been cancelled again)

Tuesday, June 29, 2010

Thank you thank you thank you!!! Mikey's graduation went awesome!! I'm now the proud Mommy of a Grade 5'er and Grade 1'er!! I'm so very proud of you Liam and Mikey!!

There hasn't been too much going on, although for some reason Mikey has been a little more clingy and easily upset. Every morning I've woken and found him in bed next to me. Even when Liam is home (they share a room). I'm hoping it's just adjusting still from not being in school.

Mikey and I have an appointment on July 9th with his PT & OT to see firstly, another mom who is pregnant & found out recently that her unborn baby has a symby hand. Mikey is very excited to show her that he "can still do anything". I pray that he is able to put some of her fears and questions at bay. We then will be meeting with a specialist to try out different technologies to help Mikey with school. He will still be getting a laptop, but my main concern is they continue to encourage him to use both his hands as much as he can. If he tires or is not able to keep up with the workload, then the laptop will be brought in. It is most important though that he use his hands as much as possible. They've not been an impediment in anyway thus far and I think it's important that he maintain the incredible function he has now.

My surgery has been rescheduled (for the third time!) now for July 14th. Just like before, I will have 2 weeks off and in that time I am hoping to be able to update Mikey's blog. We will have a busy July, as Guy's kids will be coming to stay with us! Cloe is coming all the way from New Brunswick and we've not seen her since last August! Since fate didn't bless me with a biological daughter, I am forever grateful to have her in my life. She is the most teriffic "step-daughter" to me. She is also so amazing with Liam and Mikey and they are super-excited she's coming too (albeit I think she is Liam's first crush!). Guy's son Xander will also be with us and although we get to see him a little more often, it's great to see how well our three boys are coming along together. Everyone is very excited that they will see Mikey in the Capital Ex parade representing the Edmonton & area War Amps CHAMPS!!!

Hope everyone has a TERRIFIC Canada Day! Our boys will be decked out in matching outfits (as they always are for this birthday party!) and I will be sure to share pictures!

Thursday, June 17, 2010

Mikey's graduation is tomorrow!!! There are no words to express my sheer delight and overflowing love for this most amazing little man.

Mikey, you've fought since the day you were conceived. We knew at only 9 weeks gestation that something wasn't right. Scans, scans and more scans. They became a weekly event for us. We still had no answers, but we had YOU. With all the uncertains we were to face, you FOUGHT. Your movement, kicks, hiccups, resting with your butt in the air pressing so hard on me, but I didn't care. I loved those moments and I will treasure them until my very last day. Baby, you will never realize the love & pride I have for you.

At 20w3d, you decided it would be a good idea to get out of your swimming pool--not a good thing little boy! When my waters broke, I was terrified. After all the tests, this was not supposed to be in the game plan! You and I got right comfy for 3.5 months worth of vacation on hospital bedrest. I will cherish those moments with you too. Little man, you fought-changed your mind-this outside world wasn't ready for you yet. Who'd ever have thought that our waters would reseal & we'd have to get induced!! you play by your own rules Mr Man!!

The moment Dr Mayo put you on my belly I grabbed you. I turned each of your little hands over in my hands. I kissed each little digit you had. I kissed your lips.your hair.your eyes. My baby, before that moment we still didn't know what to expect. You were so very perfect. I kissed each little pea you had, looked you in your barely open newborn blue eyes and told you your were PERFECT.

You've given me insight to a world I never knew before. I am so honored to be in the world I am now. You've opened my eyes to the world of being disabled, but able just the same :) You've shown me, and the whole world "WHO NEEDS 10 FINGERS"? I appreciate life and the little things in life with much more appreciation and love moreso now--thanks to you.

My son, here we are on the eve of your Kindergarten graduation. It's hard to believe that you've already done 2 years of preschool and now this. Baby, so many people-including your whole family-didn't know what to expect from you with school. How many adjustments we'd need to make. You've proven to all of us, that you can do anything and everything!!! Baby, last year I was so heartbroken when you brought home a form that you would be learning sign language in class. I literally heard my heart shatter and I called the school and lost emotions on them. I was so heartbroken that they would give this "insult" to us. At the time there wasn't a hearing impaired child in class (or the school)-it was just to learn--which is absolutley fantastic, but for a child with Mikey's limb difference, was this really nessessary?

Well my precious miracle, you proved Mom wrong again. And the doctors. And all your therapists. Mikey, you signed and spoke me the Hail Mary. My tears were tears of joy, pride, wonder. I love you Mikey--you keep reaffirming to me that life is good and to never take anything for granted. More importantly, you've made me the Mom I am today.

Liam and I are so very proud of you sweetheart. I can not wait to see you in your cap and gown tomorrow. xoxox

Tuesday, June 15, 2010

Just a quickie post today--only 3 more days till Mikey's Kindergarten graduation!!! He goes to bed & wakes up counting down!

I am so excited (albeit a little sad too) for my BABY to be graduating Kindy. After 2 years in preschool, 1 year in Kindy, I think my boy is ready for Grade 1!! And what is he most excited about in this venture? That he will get to have Lunch Lady every week!!! It's a hot lunch program the school offers every week and Mikey's been upset this year that he misses out on it but Liam gets to participate--I guess in his eyes you are a big boy only once you get have Lunch Lady day!!!

The picture I'm including is a rare one ;) I hadn't wanted to post much with either of our faces, but this picture will be an exception--no doubt who his Momma is!! I've always thought he looks like his dad--until I saw this picture!

The following picture is a masterpiece, that I'm sure any mom would treasure (and have a few of these lying around somewhere!!) But for this Momma, my heart swells with nothing but pride:

(this first picture is Mikey's drawing of Heaven. He's drawn his Poppa Tom & Poppa Herman and a beautiful rainbow)

I am so very proud of the picture below. Mikey made it in December 2008 when we were at Liam's Christmas concert. I didn't have to prompt him. He asked me for a pen & drew this on the back of the concert program. I still proudly have it hanging in my office.
See, who needs 10 fingers?!!

Friday, June 11, 2010

I did post a long update yesterday, but silly blogger (or me!) it didn't save for some reason. Anyhow, my surgery was bumped yet again. Which, aside from causing frustration with work & the kids, it's fine. I really am not looking forward to having my face worked on again.

Mikey is doing well. He graduates from Kindergarten next Friday!! I am so happy beyond words that my little man is growing up and doing so well! I also spoke with one of his school OT's and she let me know that they've decided to go against using the standardized testing (Peabody) and score Mikey against the kids in his class!! This is HUGE!!! Since day 1 I've never understood how they can use those tests, because he'd be deducted for things like not using proper pincher grasp. I mean come on HE DOESN'T EVEN HAVE the digits required for that, so why do they fail him? It's not like he wasn't doing it because he didn't know how--he physically couldn't. Anyhow FINALLY this year his team agrees and my boy will be tested just like all the other kids. And really, it frustrates me too that (and I do know all the kids are watched/tested but Mikey is a bit more scrutinized) because he has this obvious defect he is constantly tested. I mean really, I know kids who have 10 fingers and still have fine motor delay (helloooo-Liam for one!). I hate the spotlight being on Mikey although don't get me wrong, I am very pleased that he is receiving screening. His OT told me too, that his printing is on par with some of his grade 2 peers!!!!

That's my boy-my hero!!! I have some pictures that I want to share--mostly to help other symby families see how Mikey does things; such as putting butter on his pancakes, twirling spaghetti and such. I have to figure out how to take the pictures off my old cell first!

I hope everyone has a great weekend and I will update next week.