Monday, July 29, 2013

A Kindred Spirit "Cranio" Buddy

I was reading the TinySuperheroes Blog last week. May I give a shout-out to this amazing Website? Robyn {As I have mentioned before} is a truly awesome woman with an enormous heart who sews capes for diverse "special needs" children. Then she sends them via snail mail. This organization is also in need of money, so, if you can, I encourage donations!! Last week, I "met" a Beautifully Unique little boy--named Mikey--who {Like me!!} was born with craniosynostosis!! This is a rare birth defect. 1 out of 2,000 babies born are affected by craniosynostosis, which mostly occurs in boys. {I am a rebel!! What can I say?} A Kindred Spirit "Cranio" Buddy!! I was thrilled!! Like with Ramsey and Zoe, I asked for permission to repost this story on Beautifully Unique. And, as expected, a gracious Robyn said "yes"!! With one request. That I link her post to my Blog and make it like hers. Okay!! Hopefully, I am doing Robyn's post justice!! It is an honor and a privilege to present to you all.... Mikey!!     

Super Mikey


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All of our TinySuperheroes are small and mighty, and Super Mikey is no different. Super Mikey revealed his personality right off the bat. In fact, his mom and dad were prepared to welcome a daughter into the world when he was born! They had a name picked out and surely lots of pink clothes, so imagine their surprise when Michael appeared! Mikey has kept them on their toes ever since.
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Super Mikey was born in the summer of 2012 and was a beautiful, happy, squeezable bundle of joy. Everyone loved him, which isn’t hard to believe, but he especially had his mom and dad wrapped around his finger!

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They were shocked, terrified, and overwhelmed when at his 4-month check up in October 2012, they learned that their little Mikey had craniosynostosis. Craniosynostosis is a birth defect that causes sutures on a baby’s head to close earlier than normal. A suture is a type of fibrous joint found in the skull. The skull typically takes time to fuse together, giving the brain time to grow. For kids with craniosynostosis, this fusion happens prematurely, when these sutures turn into bone too soon. Not treating this defect early can cause seizures, developmental delays and/or blindness later in life. On the day of his diagnosis, Mikey became Superman to his parents, and together the three of them embarked on a journey that would reveal just how strong their TinySuperhero really was.
Timing is very important for this major surgery, so Mikey would have to wait several months until his surgery. During that timehe received surgery for ear tubes, got pneumonia, and wore an eye patch to strengthen one of his eyes. Just two months ago on May 22, Super Mikey went into surgery which was expected to last 4-5 hours.
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This is the synopsis of the surgery from his mom, “Basically, though, Dr. Matthews will cut Michael’s head from ear to ear and remove several parts of his skull and reconstruct them correctly. He will create a hole on the right side of the head about 3/4 of an inch which we hope the brain will move into during the next few months — we need that to happen for surgery success and to reduce the chances for a repeat surgery.” Super Mikey was geared up TinySuperhero style at the hospital before surgery, so no doubt these doctors knew they were dealing with someone special!
And here are Super Mikey’s post surgery thoughts, “Really, almost a week ago I am rolling around the hospital with a superman cape on with cute nurses cooing over me and the next thing I know I’m wearing a turban and have tons of cords hanging out of me, and I can’t open my eyes nor sleep on my belly and I literally can’t eat — these big people are full of lies! What’s next? Santa isn’t real? And they think giving me some balloons and a bear is going to make things all better?”
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Well, he does have a pretty rad scar that he left the hospital with – one sign of a true TinySuperhero. Super Mikey’s family has an amazing ability to keep faith and humor throughout their journey, something that surely translates to Mikey’s surgical success.
Super Mikey did great during surgery, but the recovery process was far from easy. In recovery, Super Mikey couldn’t sleep on his right side for up to 6 weeks, and once all of the swelling was gone he received a band to wear around his head for 23 hours a day, for 3-4 months. (They plan to decorate his band to match a Panther’s helmet – we think it will look great with his TinySuperhero cape and hope to see photos!)
IMG_0499photo4Here you’ll see a strong Super Mikey before surgery and a stronger Super Mikey just 10 days after surgery!
Today, Super Mikey is doing great. He’s been wearing his band for over a month now and is successfully sleeping in his crib again. Most importantly, his sweet, sweet smile is back!
For me, unlike anything I’ve ever experienced, this has changed me as a person and I think it’s going to take me sometimeto figure it all out. As I said, I am fortunate Mikey will not remember anything and may only ask in a few years why he hates superheroes — what a story that will be!” – Super Mikey’s Mom
Super Mikey has been surrounded by love and excitement from the day his parents found out they were pregnant. In fact, it was several of his parents college friends (AKA his Syracuse Aunties) that wrote to us here at TinySuperheroes to tell us all about how extraordinary Mikey was! We’re sure glad they did because the TinySuperhero Squad wouldn’t be the same without him!
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10 comments:

Dip-Dip and the Bridge said...

What a wonderful brave little boy to go through that at such a young age.
I am sure Mikey has a wonderful life ahead of him!
Lynne x

Molly The Wally said...

Thank you for sharing the story of Super Mikey. We wish him and his family all the best. What a beautiful smile he has. Bless him.
Have a marvellous Monday.
Best wishes Molly

Raelyn said...

Lynne....
Thank-you for the comment, Friend!!
"I am sure Mikey has a wonderful life ahead of him!". Certainly he does!! ;op

Raelyn said...

Molly....
Thank-you for commenting, Friend!!
"We wish him and his family all the best. What a beautiful smile he has. Bless him.". I can't but agree!! Mikey does have a beautiful smile!! ;op

bbes tribe said...

Hi Raelyn, thanks for sharing Mikey's story. He does have a beautiful smile and we are wishing him a wonderful life. Thanks for visiting us. Hopefully we will not be gone so Long next time. We are missing Sasha but she is now pain free, breathing easier, and better off. We are getting new fosters in a couple of days. They are on the way up from a high kill shelter in CA. Take care Raelyn and of course Rose.
Wags
Ernie,Chica,Lucas,Rosie and Barb

Raelyn said...

Ernie, Chica, Lucas, Rosie and Barb....
Thank-you for the comment, Friend!! I truly appreciated it!! ;)
"Thanks for sharing Mikey's story. He does have a beautiful smile and we are wishing him a wonderful life.". It was my pleasure!! I, too, wish Mikey a wonderful life!! ;op

chicamom85 said...

Thank you for sharing this incredible story about this beautiful little boy!


Anne and Sasha

Raelyn said...

Anne and Sasha....
Thank-you for the comment, Friend!! I truly appreciated it!! ;)
"Thank you for sharing this incredible story about this beautiful little boy!". You're welcome!! It was my pleasure!! ;op

Ruby said...

Wow- what a story! Thanks so much for sharing. Glad you found him and can support him and his family!

Raelyn said...

Ruby....
Thank-you for the comment, Friend!!
"Wow- what a story! Thanks so much for sharing. Glad you found him and can support him and his family!". Me too!! ;op