Wednesday, December 22, 2010

Happy Everything!!!!

It took some time to work into the Christmas spirit this year. I spent so much time focusing on what we didn't have and not enough focusing on the spirit of renewal. My friends helped spark that little light that would begin to again burn the passion of the season. We have memories to make this holiday season.

William received some special "do dog" PJ's from his cousin Beth. The joy these brought him renewed my resolve to get PJ's to all our little cast friends! So 2011 is going to be the mailing blitz to 3 new centers. This will make 5 centers and countless kids greeted by our club. Parent packs have been ordered to accompany these PJ's. The parent pack is the backbone of the casting process. Families need to know how to handle this new accessory and we intend to arm them with this valuable resource. My biggest goal for 2011 is the plan a fundraising event to move us to the next level in giving. We have dreams to follow and funding these dreams will be our focus.

A little William update: Cody has started trying to modify his brothers naughty behavior this holiday. He is giving his brother "Santa Points" at the beginning of the day. As he does really nice things i.e. picks up his toys, gives hugs, plays nice, he earns additional Santa Points. Very cute. William cheers Santa points. If he is not so nice and acts like a tyrant Cody deducts Santa points.
Today he was negative 50 Santa points.  Holy Cow.  Thank Goodness he is cute.  I think that will help Santa take him from the naughty list.  Another trick he has started is using his cast as a storage center for later.  A few days ago he started telling us "color red hurts".  It took a little coaxing but we were able to translate to their is a red crayon in the back of my cast.  After lots of screaming and a panty hose to floss under the cast a red crayon emerged.  Last night it was another crayon and chex mix.  We keep telling him to stop putting things in his cast, but it is way to tempting.  I am trying to keep a shirt on him in the hopes it will at least deter future hoarding issues.  I am terrified of what we will find when this one is finally cut off. 

A final thought as I log off for the holidays.  We have all traversed a trying 2010 whether it be cast changes or changes in treatment.  With each bump we have bounced back the other way.  We may get knocked down, but we aren't staying down.  We have our lives and love to keep us coming back to center.  Last year I started 2010 somewhat alone and scared of what was to come.  2011 will begin very different...I have friends who are more like family & family who are incredible friends on our side, I have expereience to know I can handle whatever is thrown our way, We have a beautiful charitable resource that has no where to go but up honoring our children everyday, & best of all I have the boys in my life to keep me on my toes.  I have Happy Everything! 

Tuesday, December 21, 2010

The cast becoming a family member

Massimo has been out of the cast for 2 weeks now! He had come down with a rash from the previous cast and also a cough. So we cancelled his dec. 14 cast date and will wait til after the holidays for cast #3.
We have enjoyed the freedom for Massi! He literally wants to take a bath everyday. He puts food on his hands and then in his hair because I think he knows it will result in a bath! I love picking up a lighter Massi and hugging him as long as I can!
But as I was looking at his back seeing what I think is an improvement in his curve, I was missing the cast! Why? because I know the cast helps him, gives us hope that he will have a straight spine, it reminds me that the casting is a miracle that has brought improvement to other kids and brought some wonderful families into my life! I hope this all makes sense!
On a lighter note, the cast is like another child.
With the 1st child you are so careful and doting on them and even checking to see if there chest goes up and down in the midddle of the night. We dress them in all these cute outfits and if they get a stain on the outift, off it goes and into the wash.
This is like the 1st cast, It is so new, you don't know what to expect! You make sure it is ok and that your child is ok in it. You practically dress your child in a long bib so not to get the cast dirty. If the cast does get dirty, the wipes come out and you make sure it is spotless.
When the 2nd child comes, you feel like a pro. You pay less attention to the dirt on their clothes or even their body. You become less neurotic about their every move....although you don't love them any less.
With our 2nd cast, it was like having the 2nd child. We were less worried about Massi in the cast. We didn't follow the cast's every move. We were less concerned about it getting dirty and that definitely showed as Robert took it off! To see parts of our Christmas tree, food, and god knows what else under there, made me chuckle.
Now with the 3rd cast coming soon, will it be like us having our 3rd child....Massimo. I knew he was the last one we would have so I treasured every moment because I knew i wouldn't experience it again.
Don't get me wrong, I know in no way this is will be Massimo's last cast! I am just curious to see how we will welcome and treat our newest family member!

Saturday, December 4, 2010

Happy Day Sweet William J!

Two Years ago we brought a beautiful baby boy into our family.  Baby made four.  The perfect addition to our family, the missing part that made us all whole.  Cody finally had his little brother, the one that would be with him for a lifetime, that would laugh with him and cry with him when times were hard.  His lifelong bestfriend.  I remember the anticipation of what life would be like when he had this new friend.  We laugh now about the angst we were feeling before he arrived.  7 years almost 8 years of just Cody and now we have someone new to love...would their be enough love, would Cody feel cheated by having to share us with someone else.  The day of his arrival we quickly learned this heart of ours grows.  Their was enough for all of us.  Jump two years and a lifetime of whats and we are all still in awe of our family of four. 

William has traveled a lifetime in his two short years.  Our hearts have grown to add so many more to our family than just the little one we brought home that day.  Love refills and expands to allow for all you need.  It is a renewable energy, when you feel you have hit the wall you wait and recharge and their it is ready for more.  William has given us gifts he will never understand.  He has taught his brother patience and compassion for others.  He has taught our family that perfect has varying meanings and that love is always enough.  We are so blessed to have these two boys both perfect in their own light. 

The past few weeks have had ups and downs for our family. William has struggled with this new cast.  It is larger than the last and we spent much of the first few weeks reassuring him we can't take it off.  His birthday dinner last night ended with him projectile vomitting for about 6 hours.  His brother also was hit by the bug and so laundry was a never ending process for us on his birthday evening.  The high points of the day far outweigh the downsides.  Cody and I took William to Target and let him pick out his birthday present from our family: A movie size Jessie Doll with a pull string.  He loves that doll!  We also picked up the newest GLEE cd and danced all the way home in the car.  Cody said mom people are staring at you, I smiled, turned the volume up and danced more as the car went down the road.  Cody, my nephew Sam and William then started dancing in the car with me.  We danced all the way to the driveway.  When we parked I smiled and said wasn't that fun, thats whats called living my loves...if the other people were staring it's because they need to dance in their car more.  Later last night, William had fallen asleep in between throwing up and I had just placed the last load of laundry in the dryer for clean pillows.  Cody started yelling for dad and I, we walked in the living room and Cody had You Tube pulled up on the Wii.  He hit play, GLEE I had the time of my life, started playing with Cody in the middle of the living room singing to us both, he stopped for a moment and said "Now thats called living, made you smile." We finished the song, Daddy and I dancing with Cody....Truly living. 

Life will throw you curve balls, but you must never be afraid to look to the light.  It's the moments in time where your heart is full and your mind can just dance that will mean the most.  You never look silly when you are just living it to it's fullest!  

Thursday, November 25, 2010

I don't even know where to begin.

The very fact that I have re-written this first sentence no fewer than 20 times should attest to that!

What am I thankful for?

Just one thing? Because I can't narrow it down. My heart and my spirit overbounds with thankfulness. That sounds so sappy; and mushy. But if you had walked the amount of miles I have clocked in this last year - you would feel the same way. I don't know where to begin in the list of things I am thankful for. Last year, I wrote a blog entitled Today I Give Thanks. And I feel like that was pretty concise. And honestly, I should have renamed it to "Everyday for the rest of my life I will give thanks for..." Because, literally, every day of this last year I have given thanks for the sentiment of that post. So, all that's number 1.

Every day I give thanks that a string of miracles led my beautiful daughter Makenna to the treatment she needed. That my parents had instilled in me a never ending search for the truth and a perserverance that wouldn't be stopped. That I am just stubborn enough to have to see for myself and not just trust what I am told(in a polite way, of course :)) That the internet exist to aid parents in seeking the best medical treatment for their children. And that it exists to connect people who normally would not cross paths. People who can hold me up when I feel like falling down. People who lean on me just as much as I lean on them. People who know the path I am travelling and can reassure me that I am not alone - even though it feels so dark and quiet at times. Yes, every day. Every day I give thanks for all those things.

This year. We were able to confirm a diagnosis for Makenna. She has Horizontal Gaze Palsy with Progressive Scoliosis (HGPPS). I have known she had that since August of 2009. It took until February of 2010 to get a genetic confirmation. There are very few reported cases in the world - around 80. After meeting with the specialist in Boston - which is another day I give thanks for each day:) - I now understand the condition. Most people are 'cross-wired'. The left side of their brain controls the right side of their body and vice versa. Makenna is not. Her nerves do not cross. The right side of her brain is wired to the right side of her body. The fact that a gaze palsy and progressive scoliosis are ALL she has is a miracle to me. I am thankful for that miracle and the diagnosis in and of itself. When you know there is something wrong with your child, but you don't know what it is - it's agonizing. We spent the first three years of Makenna's life waiting for the other shoe to drop. It just seemed like there was always something with her...and we didn't know what was coming next. Having a diagnosis lets us know that we've hit all the major speedbumps. I mean we still have little issues to conquer - reading will be a concern because of the eye tracking - but, we'll handle those as they come. We know it's not degenerative and it doesn't effect her cognition. All blessings.

I am thankful for my newfound group of solidarity. I can't say it enough. The group of mothers I have met inspire me on a daily basis. They are my sunshine on a rainy day, my rope when I feel like I'm standing in quicksand, and my inspiration to keep going and make a difference.

There is so much left to do. To make sure that each and every child who needs casting treatment gets it. Or is at least offered it. Or at least their parents can find it easy! So many hurdles. So many standards to change. I am hopeful and I see signs of improvement. Just today, I found an article that confirms that Riely Hospital in Indianapolis is offering casting. I am thankful that doctors are moving to new communities and offering the treatment. Spread the knowledge - spread the word.

Lastly, I am thankful that after all our famliy has been through in the last 15 months, we are strong. We are energized. I am thankful that I still have fight left in me :)And I'm going to use it!

What I am most grateful for, though, is Makenna's progress. She is a testimony to this treatment. I am happy to report that after a series of 4 casts, Makenna was transitioned into a brace. We began at a humble 20 degress. But given her underlying condition that was bound to progress quickly and aggressively. She is currently holding somewhere between zero and 10 degrees. I still look at her every day. I analyze her back as she climbs into the tub. I watch as she sits down. I don't think I'll ever stop. And she is patient with me. She humors me and lets me 'rub' her back; as I trace my finger up and down her spine to check. She gallops equally on both feet at my insistance.

She shows her gratitude as well.

I often ask my kids "What are you grateful for today?"

And Makenna answered the other day,

"I am grateful that you rub my tummy and my back".

Give Thanks!

Wednesday, November 24, 2010

For Good

Thanks & Giving

I tried in my sleep last night to focus less on the day and more on the Thanks and Giving of this trip.  So many things to be thankful for.  We started our trip in a rain storm stuck in traffic.  I swear a part of each of us in the car snapped a little while stuck on the Dan Ryan in a rainstorm. The car ride was then diverted by traffic and we chose to head to the hotel rather than keep on course to the Lego Store in Schaumburg.  Dinner was planned at 6:30 with some really great friends.  As we checked in the hotel some 1.5 hrs after hitting the city limits we actually laughed about our moods hitting our new friends in the face.  We got to Leona's Pizza in Oak Park and waited anxiously for our friends the Giunta family to arrive.  I saw Tracy walk through the door first and air left my lungs.  We embraced and I knew it was going to be OK.  We didn't have to be anything to these people other than scared parents the night before a cast.  They have been there.  The night was easy.  Will and Massi were little monsters running around the restaurant and giggling with delight.  Before I knew it 2 hours had passed and it was time to head home.  I still fear they got to see the cynical side of the The Diefenbaugh's rather than Chad and Catie fun and outgoing.  After a little sleep, I think it is OK.  They are friends, the lifelong kind and all is good.  We will hopefully have all our friends to our neck of the woods for a little out of city experience where we can show them a little glimpse of our city.  Thank you to the Giunta Family for helping us through a crazy night.  We pray your clan is over their stomach virus that attacked the day after.  You are amazing people!  We are blessed this journey has giving us the pleasure of this friendship. 

OK so cast day....William slept all night.  That doesn't happen often but heaven gave us this gift.  We arrived at precisely the same time as the Miller family and hugs were exchanged with our old friends.  We checked into our room to see Kelli and Doug with sweet Rylie!  Here's another family we absolutely LOVE.  We all looked at the 4th tag on the wall and said do we know Quinn?  About that time a 4th family with another beautiful little girl walked in....Quinn makes 4!  Two beautiful girls and Two strong handsome boys.  The quartet of Casting Families were talking and sharing as Gwen ran vitals around the room.  The big boys were so brave for weight and bp.  This was a first for William.  The squeezy arm thing is his arch nemesis.  We all trailed down to x-ray in sequence: Rylie first, Quinn, William, then Super Hero Jack.  The resident was funny, I guess I have to sign these backs so they don't confuse it with another back...He had a point, they weren't cutting off the wrong arm, it was a back and they only have one of them.  Linda came in and gave us all smiles.  Linda and Gwen are the backbone of that place.  I asked her a ton of really stupid questions to which she answers all of them.  Time began to fly at that point.  Cast time is now here. 

Rylie, Quinn, William, then Jack.  As each little brave one travels back a scared parent walks out.  We all gathered our Pj's as we waited.  So many Pj's for so many friends.  This is going to be great.  Numbers came out before little ones, then was little angels in sequence coming out and getting taped and heading home.  We said goodbye to Sweet Baby Rylie while William was still in and Goodbye to sweet Quinn while William was being taped, Super Hero Jack came out while William was throwing his tantrum.  New things shot at us and Big brother was there the entire time.  We are truly blessed parents to have two wonderful boys and Cody is amazingly attentive to his brother.  For this day and it's blessings we are Thankful.

The Giving: Each little one left with a new pair of Pajama's.  YAY LUCKY CAST CLUB! Our first dream becoming a reality.  New Toys and PJ's were delivered.  YAY Shriners kids!  You are getting a special hug from some special families.  Kelli came up with some fabulous new ideas to take us into the new year.  Bedside DVD players are next and a fabulous movie drive to stock the hospital with kids favorites.  Pj's need to be a staple to our club.  We all realized this while sitting in the room talking.  So PJ's and DVDs for the Lucky Cast Club will kick off in the new year.  Amy gave us all a surprise with her news release to showcase the Thanks and Giving of some very special little friends.  Hopefully someone with heart will read her release. 

BIG THANKS: Thank you to the families who are supporting us, The wonderful Shriners staff: Gwen, Linda, Tom, Robert, Ruby, Dr. Hammerberg and the beautiful aides and nurses who pop in and out of our little ones days.  Thanks for the cast free hugs some of our little ones will get through the holidays.  I know there is heartache and fear associated with some of these out of cast moments but look at them as a gift of time.  Additional time to let them be little and carefree.  Thanks for a year of casting that has staved off surgery.  Thanks for numbers lower than where we started and time to continue the process.  Thanks that Keira is out of surgery range, Dylan is still casting at a center willing to keep trying, Max, Makenna, & Drue are in braces, Adelyn is going to get the help she needs to get her back on track...we love our sweet girl, Kiya is going to get back to casting after her Keloid is removed...enjoy the hugs mom, Cadence, Jackson and William are still in the game...just in overtime so to speak, Beautiful Giana is holding strong and charting new courses in her wake, she is our hope for what is to come...lead the way sweet girl, Massimo, Rylie, & Kaity are making it through their first year of milestones and gaining correction along the way, We love our sweet babies, and Sweet Quinn and her family have entered our lives.  Way to Grow Lucky Cast Friends!  We have a lot to be thankful for even if we have to take a few moments sometimes to see it. 

Friday, November 12, 2010

What we are all about

This was shared between some of us on Facebook and I had to post it here as well. The members of the Lucky Cast club are amazing. I am honored to be a part of this and it is nice to know that I have such amazing support. People who will catch me when I am falling and allow me to cry and to dry my tears. I only hope I can do the same for them when they need it.

We are 24 days away from squishy hugs. I cannot wait and yet I am terrified all at the same time. Cast free life for a week seems like an big unknown. We are so used to the cast at this point it is just part of life. Besides the hugs, I am really looking forward to Kiya splashing in the bath tub for the first time since September 13.

So to all my cast friends approaching your squishy hugs, know we are there for you and will be praying for low nubmers and for a successful cast day.

A Team with Heart

Some very special football players gave my special little man quite the boost this week. The Bosse Bulldogs invited my little man to their practice before Regional's this weekend.  They are an amazing group of young football players.  The team is small in comparison to the teams they are facing.  11 players on the starting line up with 9 playing both offence and defence.  In the face of adversity they just dig deep and keep on coming.  Last night my sister in law called and said one of the players had written on the play board....For Will.  That is the first time in a long time I had seen my husband tear up. We will be cheering our hearts out tonight as they travel to Indian Creek some 2.5 hours away to play their Regional game....For Will.  No matter the score these guys are our hero's!

There has been alot of talk on some of the chat groups about weird looks and stares at our kids in cast.  I have to say we haven't had this.  Of course some people who notice his cast will ask what happened.  That is normal.  I think if I saw a little kid in a full torso cast I would ask what happened as well.  When you tell them though, they say wow I didn't know little kids can get scoliosis.  These boys have embraced diversity in their play and in Will.  In a nation plagued with bullying kids for their differences it is good to see the good in teenagers.  These are what you would consider the popular kids, the jocks and they have enough heart to take this little guy under their wings.  They have enough compassion to think beyond their need for a win and choose to play for someone other than thereselves.  I am humbled by their gesture.
William, his "football helmet" and lucky bulldog pants!

Our little line backer has one week today left in cast #5.  Wow this last 10 weeks has flown.  If all goes as planned we will be sitting cast free at the Semi-state game next friday night.  We plan to travel next Sunday morning to Chicago for our Tuesday casting.  Sunday if travels are smooth we will be meeting some very special friends in Chicago for Sunday Brunch...or it may be Lunch...ooops sorry guys.  We are so excited about sharing some togetherness with The Miller, Bancsy, Guinta and hopefully the Justl family.  These are some of my girls and the opportunity to see them outside the hospital would be incredible.  PJ totals for the lucky cast club have sky rocketed.  In addition we have some great centers who have received some special deliveries courtesy of some Lucky Cast members.  Liz and Keira delivered 50 pairs of tagged PJ's to Salt Lake City Thursday for Keira's cast number 8!  Great news for is thankfully off the table for now.  28.5 degrees and holding!!!! Way to grow Keira.  We are waiting to here you are back in the Napa Valley safe and sound! 

Each cast these little friends face is like the championship game.  The stakes are high and emotions run thin.  I am going to take my own advice next week and think of this as bringing home the game fast, play hard, play smart....and know you are a winner regardless of the score. 


Friday, November 5, 2010


We are in the countdown to cast off.  12 days until we get our snuggly hugs and splish splash in the bath tub.  I can tell you I am counting the days, but I am definitely apprehensive for the new cast.  A year later and you wonder where the time has gone.  New friends, new casts and the days just spiral into another.  I can honestly tell you I thought we would meet the end of year one and be looking at a new brace.  With that said I think the idea of a brace scares me more than the life we have adjusted to in cast.  Cast life is our normal now.  We know what to do and how to do it. 

Halloween brought lots of smiles in our life.  Hayride at Grandpa's and trick or treating in the wagon.  William was a devil which seems oh to fitting for our little terrible two year old!  I will have to share pics once I get them uploaded.  Our 2nd birthday will come shortly after cast #6.  Too much fun is on the horizon. 

Special Birthdays have been celebrated by so many of our lucky cast friends.  Adelyn and Miss Rylie have turned one in cast!  Such big girls!  Hard to think the babies in our group are growing so quick.  Drue turned two this week and will be followed by Kiya and 3 days later William.  Mr. Dylan is the big 5 now!  It seems they are all growing so fast.  Time moves on and so does the year.  It seems yesterday Cameron and Jackson hit their Big 2 milestone and now they are closer to 3. Each birthday is a celebration of the year they have spent gently correcting rather then a surgery and lengthening!  Celebrating the milestones! 

I am hoping some of our friends will have the chance to post in the next few weeks.  I am feeling a little rundown as mommy's sometimes do.  Sending straight thoughts and big hugs to our lucky cast club friends and family!  See so many of you soon! 

Friday, October 22, 2010

Moving right along

William & Blake October 2009 prior to first cast

Welcome Fall!  It is nice to have a new season.  Summer was a tough road for the casters.  The heat plus the cast made for lots of inside days.  It brings smiles to my heart to hear stories of these little troopers playing outdoors again and families trying to relax a little and enjoy the change.  I reflected the other day back 1 year ago to the fear of our initial diagnosis.  It is crazy to think we have a spent a year in this cast and a year getting used to the diagnosis.  I think it is often cathartic to vent at times at the year we have missed.  I think back to watching the others in our lives go through their first 2 years and I can see so many contrasts as well as similiarity's.  I believe William's last year has been a good one.  A year he has grown both physically and emotionally.  We are extremely grateful for his cast.  It has allowed him to grow straight and tall without worrying about his spine spiraling out of control.  We have met and gained a whole new family of friends in this process as well. I have seen him grow emotionally as well.  He has many friends big and small.  His brother Cody's class are some of his favorites.  He smiles everytime he see's his favorites...Kate, Isabelle, Paige P., both Nates and so many others bring joy to his afternoons.  The girls love to get knuckles from him and he loves the attention of giving them. 
       The sorrow comes from some of the little things.  We went to the pediatrician the other day and he sobbed at the sight of him.  he said no cast mommy. I kept saying no cast baby, just your boo boo.  He is not stupid....Dr. equals cast.  Cast equals anesthesia which equals waking up sore.  I know this passes, but at the moment for them it is miserable.  I think I always try to paint this picture that everything is rosey.  The reality is there are very definitive moments of casting that suck...yes the alternative sucks more...but they suck non the less.  William and his friends carry around approximately 1/4 their body weight on a daily basis.  They don't ever get away from the uncomfortable sleeping, They each have their own additional battles...sleep studies, geneticist appointments, constipation, rashes, sores, colds can be debilitating, the heat is a hazard.  These are just some of the crap they deal with. 

Cast #1 Noverrmber 2009, Day 3

Cast #1 Nov. 2009 Day 2

       Ok so I always end on a positive note.  Casting isn't a piece of cake, but it is manageable.  The kids are better at dealing with all this than any of us mommy's and daddy's.  We are lucky enough to be able to renew our strength through them.  Dylan and Gianna got their new casts last week.  Both are home and doing great.  With that said I think both sets of parents are still recovering.  Each cast brings sorrow that we are not at the end of this journey, but each little caster gives us the strength to continue the journey.  I promise to make the next post less whiney and more upbeat.  KEEP THE PJ's coming!  The drive has gotten HUGE with lots of centers to send smiles to! 

Monday, October 18, 2010

Thoughts from a Mom one month later

I have been trying to figure out how to write this post. I am not all that sure who reads it but I thought just maybe if I shared what's going on with Miss Kiya that I might be able to give hope to another family.

Just over 1 month ago, Kiya got her first cast. I was TERRIFIED. I was so worried that I was going to lose my good sleeper, my silly, sassy little girl. I was worried that she wouldn't be able to do anything physically and she was already behind her peers in gross motor skills. I was worried she would be so ticked off at me, the world, everything that she would just give up. Everyone tried to reassure me that kids bounce back but I just couldn't believe it. I more than believe it now and give that same advice to other worried parents.

You see not only did my sassy almost 2 year old show glimpses of herself on cast day, she was back to being silly and loud and ridiculously adorable by the next day. Sure she had some trouble adjusting. Things were different but by 3 days in she was rolling over, crawling, pulling herself up and cruising. She wasn't walking fully prior to her first cast so we didn't expect that she would anytime soon.

We did have a couple of surprises post cast. One of the surprises was her appetite. She was always a great eater but now she is a picky toddler so she eats smaller meals more often which I chalk up to cast and toddlerhood combined. Other than night one, she had no trouble sleeping in her cast. She has only asked to have her cast off once and that was the day after she got it. She LOVES water and bath time and sees the bath tub everyday but has not once gotten upset about our new bath routine. Hair washing is a whole other beast but she hated that prior to casting so that is still a work in progress.

She knows that she has a cast in that she can say cast. She knows that it is purple. She knows that cracker crumbs and gravel and things fit down the front and require some attention. She loves to knock on her cast and say knock knock. I started that to lighten the whole casting experience. I would knock on her cast and say who's in there and say Kiya. Now when I knock and ask her who is in there she says Kiya.  She even got grandpa to knock on her cast. It is really kind of cute.

Choosing to have your child casted is not easy. There is always worry. There is the dreaded waking up from anesthesia, there is Gwen with her tape and Robert with his saw but I know in my heart that it is the best thing I could have done for Kiya. Kiya has been such a trooper. She has amazed me on so many levels.

So I am pleased to say that at the wonderful age of 22 1/2 months with the help of her cast and her ankle supports, I have a walker. That's right folks, one month post cast my non walking toddler is walking. Sure she was making progress before her first cast and we knew she would be a late walker but her balance was never quite there. The cast helped her learn to balance. Her ankle supports give her that extra little boost. She actually walks better without her ankle supports on but for now they stay as part of her daily wardrobe.

I wrote this post to give others who may stumble across it, hope. This is so much tougher on us parents than on our kids. I fully admit that I did not give my daughter enough credit. I have had to take a step back and learn from her. She is truly my inspiration. She is my joy. She is my sunshine and I am honored to be her mother.

Friday, October 15, 2010

Farewell Dr. Sturm

Today I am getting misty eyed as I realize this is Dr. Sturm's last day at Chicago Shriners.  His decision to leave Chicago has brought so much anxiety to his loyal fan base.  I can say for our family we are going to miss his familiar manner and tough exterior.  He has taken our son's care head on and has given us such hope for his future.  We know we are going to be in great hands with Dr. Hammerberg.  He is a gifted and kind man who has shown a great devotion to our children and families already! 

Moving forward...The Lucky Cast Club family will soon expand as we offer our outstretched hands to new families who will be casted at Cincinnati Children's Hospital.  Our hearts are big and our resources will soon grow to include these new families.  The PJ project has so many families and centers we need to benefit.  If we can surpass our orginal goal of 150 then we can send our beautiful PJ's with information cards to Salt Lake City, Cincinnati and St. Louis.  To achieve this on a small scale we will need a minimum of 150 additional pairs.  I think this is very achievable.  EVERY family has been accepting donations from family and friends.  It is sooo exciting to see the wonderful response we have received in just a few short weeks.  Keep them coming.  Their are so many kiddos and families we can reach with one small gesture.  Love you Lucky Cast Friends!  

Lucky Cast Friends Top Left: Makenna, Giana, Jackson
Middle: Rylie and Massimo
Bottom Left: William, Adelyn & Kiya

Monday, October 11, 2010

Cast check and meeting new friends

We took Kiya to Shriner's today to meet with Dr. Hammerberg for a post cast check up. The good news is cast is doing great, Kiya is doing great and there are no cast sores or signs of skin break down.

It was a long day. Our appointment was at 11 and we didn't see Dr. H until closer to 12 and then we went to say hi to Gwen and ran into Robert too so that was nice.

The definite highlights of the day were meeting some of our Lucky Cast friends. We able to meet Gianna, Rylie and Makenna (well sort of since she was sleeping with her fabulous new brace on.). We have some amazing kids here. It was great to see Rylie moving all over, Gianna just being a kid and Makenna getting ready for her new path with her brace.

It was also great to be able to give big hugs to the Mom's that have gotten me through this journey so far. The videos that Sarah and Amy have sent to me have been beyond amazing. I can now wash Kiya's hair with no issues at all and we feel confident that we can cut the cast off by ourselves.  On top of the practical stuff, they really show cased just how amazing and resilient these kids are with their casts on.  It gave me hope.

The only downside of the day was that we missed Adelyn and Massi. Our appointment ran so late that they had left already. Bummer :(  Hopefully our paths will cross at a future appointment date.

So next up for us is cast cut off early December and then back to Shriner's for cast #2 on Dec. 14th.

Saturday, October 9, 2010

Life is better with the love of friends

We have two more little casters who are joining our "Fun Raising" through the Lucky Cast Club. Welcome to Massimo and Rylie! Massimo is the son of my friend Tracy.  Sweet Massi will get cast #2 on Monday and be joined by several of our lucky cast friends.  Massi is the light of his families eye and Lucky #3 for his family.  We are sooo sorry we will not get the chance to meet them this cast date, but we are planning to touch base with this amazing family hopefully in November.  Welcome Massi and Family to our Family. 

Sweet Rylie will be celebrating her first birthday in a few short weeks.  She is such a ray of hope to her Mom, Dad, and big brothers.  Rylie is such a little super star.  She is barely 2 weeks into her first cast and wowing us all.  We will be lucky enough to meet Rylie and her family at her second casting November 23rd.  Keep on dazzling sweet girl!  You are inspiring all of us! 

I am reflecting on the numbers of new families that have joined us since our first post.  It seems we started this journey scared and somewhat lonely.  In what will be a year October 17th, our hearts have grown beyond our wildest dreams.  We now have a larger family of friends, a brand new website, so many fun things planned for these families to look forward to.  In addition the year has seen several special Lucky Cast Friends meet their casting goals and move forward to new milestones in bracing.  BIG HUGS to Drueman, Max, & Makenna.  We are anxiously waiting to learn from your new adventures.  Sweet Keira was lucky enough to get a funfilled summer cast free as well.  We love you Keira and family.  We are praying this will be Keira's last return to casting. 

A final thought for our dear friend Dylan.  Dylan recently started Kindergarten and will be getting his new cast put on next week.  He is not wanting another cast.  He wants to be like his friends.  I am tearing up as I write this.  Dylan's family has changed and improved the lives of so many.  His video's showing his dad changing his undershirt to keep his skin clean has been embraced by his casting center and has allowed other families the courage to do the same.  His wonderful Dry suit showed others summer still has possibilities you just have to dream them.  The beloved shower vest we use was Sweet Dylan's families creation.  It came parcel post direct from Canada with a ton of hope for our stinky boy. I know it's not easy when you feel different from your friends.  I just want you to know there are a ton of little friends who look up to you.  You are the trendsetter in our little Cast Club.   We are sending HUGS and KISSES and HOPE to Salt Lake City with you this trip.  You our friend ROCK! 

To all our friends: To the world you may just be one person, but to one person you may be the world.  You each are the world to us! 

Saturday, October 2, 2010

Exciting Updates from the Lucky Cast Club!

The Lucky Cast Club finally has a new logo thanks to my cousin Adrienne and fabulous new Authors joining the ranks.  We created this blog almost a year ago to showcase the lives of our friends in casting.  I have tried to keep up with what is happening to others, but who better to tell their stories than our friends themselves. 

So many exciting updates to our little club.  My last post went from cast day to dreaming and dreaming is turning to reality.  We will have some very fun fundraising firsts in the next month!  The new logo will be available in shirts for family and friends to show their support for our little casters.  Shirts can be customized to show your relationship to a cast friend.  The little casters shirts will have their names on them as well as Mom, Dad, Aunt, Uncle, Brother, Sister, Grandma, Grandpa, Cousin, & Friend!  Money raised through the shirt sale will go to print parent packs & photo books for casting centers.  In addition to the shirts we will also offer car window decals that will either say Friend or Family.  What a great way to show support and raise awareness. 

As a fun project for our Lucky Cast Club families we are going to all host a PJ drive for our casting centers.  We will be collecting new Pajama's to take to our centers for our fall/winter cast dates!  Each PJ will  have a special tag that says With Love, The Lucky Cast Club.  Watch your friends on facebook for information on where to drop off your PJ's!  

We still have an uphill battle to achieve our charitable fund status, but it is attainable.  We will spread joy and dream big in the meantime.  So many things to still achieve in the name of the Lucky Cast Club....Bedside DVD players, Carseats, & most importantly a Cast Club retreat for families to get together!  They will all happen with a little hope and a lot of perserverance. 

Keep watching for new friends to join the posts!  The invites were all sent we will see who else you can meet.  I know they will feel welcome by all who read.  Love to All! 

Kiya's Story

So I am new to writing for this blog so I thought I would start off by posting my daughter's story and introducing myself. I am Cathy, the proud Mama to the sassy Miss Kiya, mentioned in the last post. She is currently 22 months old and the light of my life, curvy back and all.

My daughter Annakiya or Kiya for short was born November 29, 2008 in a small town in southern Ethiopia. She was placed in my arms forever on May 8, 2009 at just under 6 months of age. We know very little about her birth other than what her mother told us. She said she was in a lot of pain and that the birth was difficult. We are under the assumption that my daughter was born premature and with low birth weight and possibly breech…best guess was she was about 3lbs when she was born as at 6 weeks, she only weighed 6lbs.

When we traveled to Ethiopia to bring her home, we were in awe of our beautiful little girl and the strength of her mother. She was this tiny piece of perfection that weighed around 12lbs and had the most gorgeous curly hair and brown eyes and a smile that melted my heart. She did have low muscle tone from her time in an orphanage. We used to say she had jelly legs as at 6 months she couldn’t bare any weight on her legs.

Her first months home were pure heaven really. She was a very easy baby. She ate well, slept well and after a few initial ear infections was a very healthy kid. We had her evaluated at 7 months of age by our state’s Birth to 3 program. At that time she only qualified for speech therapy. They did note her low muscle tone but she was not outside the parameters of what was deemed average for her age. We declined speech therapy and agreed we would have her re-evaluated in a year.

She was late on hitting all gross motor development skills but given she was premature (likely) and her low muscle tone that was to be expected. She sat up unassisted at around 8 months, she rolled over at 11 months, she started to scoot on her butt around 12 months, she pulled herself up to a stand around 14 months, she learned to traditionally crawl at 16 months and currently at 22months she has yet to walk more than about 4-5 feet by herself but is trying really hard. She is at or above age level in fine motor, speech, problem solving, etc.

At 13 months, Kiya was in to the doctor for a sick baby visit. We didn’t see our regular doctor, but this doctor thought Kiya might have plagiocephaly and torticollis and referred us to a physical therapist. I left a little ticked that no other doctor had mentioned anything but made the appointment. We had our first visit with the therapist when Kiya was 14 months old. The therapist measured her head and determined she might have mild plagicocephaly but given her age the decision to helmet was up to us. We opted not to but continued therapy for the torticollis. The therapist also noted that Kiya sat more on one butt cheek than the other and that her posture was in essence terrible. She mentioned scoliosis but said she couldn’t be sure. We worked with the therapist on exercises to improve her muscle tone and resolve her torticollis. Most of the therapy was done at home by us. We only saw this therapist maybe once a month. So we were in for a visit with the therapist and she mentioned scoliosis again. The torticollis had resolved but her posture was terrible and she had a rib hump. She recommended that we see our regular pediatrician and get a referral to an orthopedic specialist. We did just this at Kiya’s 18 month check up the first part of June. Her pediatrician looked at her back and rib hump and agreed it was a good idea to get some x-rays taken. I scheduled the appointment with the pediatric orthopedist ASAP.

So in at the end of June 2010, we had Kiya’s first x-rays taken. She had them taken standing up and she had a 36* curve in her spine. The doctor refused to discuss our options until we had an MRI. I at this point was in tears. Never did I expect to hear MRI and sedation and all sorts of horrible sounding things that could have caused her scoliosis. I pulled myself together and we scheduled the MRI for about a week later in the first week of July. Kiya was a rock star at the hospital. She hated having the IV in but she did great and was singing songs and charming everyone who was in the PICU that day. Waiting for the results was agony but worth it. Kiya’s MRI was negative, she had idiopathic infantile scoliosis. We returned to the orthopedist at the end of July to discuss treatment. He spent all of about 5 minutes with us and in those 5 minutes mentioned body casting, bracing and wait and see. I again was freaking out. Body casting??? What the heck was that??? I asked and got a well we can wait and see and re-xray in a few months. We left the appointment and scheduled a follow up for October 2010.

As soon as I got home, I jumped on the internet. The internet can be a scary thing when researching medical stuff but in this case it saved my daughter. I found  pretty quickly and started reading stories and learning about Early Intervention and Mehta casting. I did more research and I joined an online group for parent with kids with scoliosis. I posted my daughters story on the group and was looking for help. I was lost and didn’t know what to do but the wait and see approach was not setting well with me. Within a few hours of posting, I was contacted by another mom personally by email. She gave me a ton of info on Shriner’s Hospital in Chicago and hooked me up with an amazing group of women and families all going through EDF/Mehta casting at Shriner’s Chicago. I was floored, scared and excited. We immediately sent in our application to Shriner’s Hospital and were thrilled when we got an appointment for September 2010.

The doctor at Shriner’s reviewed her x-rays and MRI films and agreed that Kiya’s scoliosis would likely not improve on its own and she was a good candidate for casting. He said given that she has no neurological issues, we should see excellent results. It was a long appointment but in a weird way we got the answers we were looking for. We waited for a cast date. After 1 week of waiting for a cast date, I called the nurse to follow up. She contacted the OR scheduling person and the next day we go the call. We had a cast date of September 14th. We had 4 days notice. I was freaking out and frantically trying to mentally and physically prepare.

Cast day arrived and we were scared but knew we were doing the right thing. We truly believe we had the best first cast day ever because we shared it with two amazing families that I had gotten to “know” via the online group and facebook and because the staff at Shriner’s Chicago are simply amazing. I am not going to lie, a lot of tears were shed that day but we all survived. Kiya is a fighter for sure. She was mad at first but she recovered and did great.

Her out of cast x-rays showed her curve had progressed to 50+ degrees in the 2 months since she was last x-rayed. The doctor’s were able to get her down to 15 degrees in cast. I was thrilled and so relieved that we didn’t wait until October to determine a treatment plan. It took a few days for Kiya to adjust but she was back to her silly, sassy self in no time. She was 21 months old at the time of first casting. She also now wears a pair of Sure Step ankle supports as she was rolling in on her ankles while standing/walking hence she hadn’t started to fully walk on her own yet.

As of writing this, we are just over 2 weeks into our first cast and 1 week + in her ankle supports and Kiya is doing great. She has now qualified for physical therapy for our state’s Birth to 3 program. Her therapist just saw her and is thrilled with her progress. She feels it won’t be much longer before we have a walking/running/jumping toddler on our hands.

We know we are at the beginning of this journey but we are so grateful to have found such incredible resources because we got a few months head start on treatment for our daughter and truly have made lifelong friends. No I take that back, we have gained family members because one sweet woman read my post and reached out to me. I am forever grateful.

Friday, September 17, 2010

Cast #5

Well here we are friends and family at cast #5.  It is crazy to think we are here and moving forward at our almost year mark in cast.  Last October started with fear of the unknown and This September is filled with such hope in our family.  We are currently sitting 32 degrees lower than our start point.  35 degrees out of cast feels like heaven! 

Cast day number 5 was perhaps our best day ever at Chicago Shriners.  We shared a room with two great families.  They are both part of our Chicago family of friends.  Sweet Jackson started this journey with us nearly a year ago.  His Mom Chrissy, Dad Adam and Grandpa were with him for this trip.  Jackson was such a trooper.  He is sporting the ultra cool Orange cast.  Perfect for Halloween.  We are so in love with this family.  Funny, strong and so supportive of all in our room.  Our other suite mates were Kiya and her wonderful mom and dad Cathy and David.  Kiya is 21 months, born 4 days before William a world away in Ethiopia.  Kiya is sporting a very Halloween appropriate Purple number for her First Cast!  She was so strong and mommy and daddy were just amazing parents!  Kiya and her family tugged firmly on the hearts of all the roommates.  We were reliving our first cast and the fear and apprehension that comes with it through them.  Small tears hit all the adults at the difference between a mad cry from the boys after the OR and a scared cry coming from our sweet Kiya.  It's funny to think that 3 families walked into that room and by the time we all left I felt like it was one big family leaving. 

I have been brainstorming again which is what I do to keep this all in perspective.  I want to do something big for these little treasures.  I want their journey to leave a mark and make a difference.  My mind goes from the small fundraisers to the big events.  I need to make a list so I have direction and purpose to my madness.  My short term goals are to get bedside DVD players for the preop.  I think I will have plaques made for each that says donated by the Lucky Cast Club Kids.  This will benefit Chicago Shriners kiddos long after ours are out of casts.  I also want to get Shutterfly photo books made with Casters pictures so all new casters can go home with pictures of other kids just like them.  I am going to start this sooner rather than later with the angels I have in my computer now.  A third and bigger hurtle I want to accomplish is new carseats for all cast kiddos who leave the hospital and need one.  I am going to focus on the Britax Marathon seat since they are easily adjustable and super durable and comfortable for cast kids.  The last and most elaborate plan...ok so it's far fetched and will be extremely hard to accomplish so we will call it a dream...I want to start a foundation in our kids name.  I would like to see us have a Lucky Cast Club house in Oak Park.  The house would be available for families to use for overnight stays.  We could host Lucky Cast Club dinners where those who travel and those who don't could meet the night before to share stories, relax and enjoy a nice night before casting that doesn't include a hotel or noisy diner.  It ideally would have at least 3 bedrooms with comfy beds equipped for little ones to stay comfortable with their parents in a home like setting.  I know the Ronald McDonald house offers this, but I think it would be special to have a place we can call home and kids years after us can call home.  We have this with my Aunt and Uncle in Oak Park.  I want everyone to have the same.  Since this is a dream....I have already decided who I am going to have run the house and she lives in Oak Park so it will be easy to make sure it is cleaned each day and families have everything they will need to be comfortable.  Crap I think this is what my mom meant when she used to tell me to get my head out of the clouds.  Sorry mom a girls got to dream! 

We need T-shirts for the Lucky Cast Club.  Chrissy brought this up and we need to run with it.  The  proceeds can start accomplishing some of these wishes and any others my cast club friends can dream.  Maybe we can plan a yearly retreat for cast families. This would give us the opportunity to meet our friends from Canada, California, Wisconsin, Florida, Alabama & Illinois outside the hospital setting!  I need to stop before I let this get away again.  Love to all our family and friends!  Thanks for allowing me to Dream! 

Thursday, August 12, 2010


Without sharing to much I felt the need to post tonight.  Cast number 4 is nearing the finish line.  We are 6 weeks into our 10 week marathon.  The home stretch for this cast I guess you can say.  In the home stretch of any race you need to find your pace and keep the goal in mind.  Focus is the key.  Many of those in our Chicago family have had distraction thrown into our focus.  Once again in true Chitown Sister fashion the girls pulled together, shared resources, listened to venting & offered new insight.  Once again they gave me grounding. 

I have fought my family and friends kicking and screaming who offered prayer as the answer.  In the beginning I thought sure prayer is a part, but research is the answer.  Knowledge is power, right?  Yes, but to much knowledge is sometimes counterproductive.  So this evening I let go and gave it to a higher power to figure out.  In this I found serenity & I found answers.  Whatever our final decision in Williams care, he will be in the hands of a higher power.  We will find the questions that still need answers and peace in the questions that will not have answers.  One door will close in his care in November, but a new door will open.  We have been given a gift to have a second set of gifted eyes review our child's care, a second set of hands to place on his spine. 

This week has been trying for not only us and our Chicago family, but for so many others in our life.  I think this is a lesson learned for me.  I hear you!  I will learn to listen when you speak and listen when I tend to react.  Blessings to my friends who have endured their own trials this week.  Your strength has given me perspective.  Be patient I am still a work in progress. 

Monday, July 5, 2010


Independence Day brought a new meaning this year.  Our little cast club member celebrated renewed independence from his everyday life.  A surprise turn of events moved our cast date up 4 weeks and allowed him some precious time out of cast.  We came out 4 days before the holiday and started our out of cast time with some wonderful firsts for toddler William.  Baby William got to swim last year.  Toddler William  hadn't got to experience this treasure that was until this wonderful weekend.  Friday night My boys, my nephews and I took William to a city pool equipped with an Olympic size baby pool.  I wasn't sure how he would react to this new experience.  He loved it!   We splashed, played and sang our favorite song about a little fish.  Its rephraim "Let's go swimming, lets go swimming, oh let's go swimming, Let's go swimming at the bottom of the ocean."  Swimming we did all weekend! 
Another First for Sweet William was ice cream all by himself.  A big bowl with whip cream and a spoon.  Pizza all by himself, playing with markers...not a planned activity but fun none the less! 
Sleep is another independence day celebration.  William for the first time in 8 weeks has slept all night.  This is a blessing for all.  He is comfortable, flips from side to side, and snuggles down for a good night of sleep.  As a parent you know what exhaustion does to you it wasn't until I saw his personality change that I realized what it must be doing for him.  Sleep, It's a good thing! 

A parent on one of the support groups posted this week how their sweet boy has a perfectly normal life in cast.  I can't say that our life is horrible, but I can't call what we live each day normal.  Maybe it's the difference from an only child to a multiple child family.  We lived normal, we know normal.  Normal is all the things we have been able to do in the past few days.  Normal is spending more than 20 minutes outside without worrying about overheating.  It is letting a little one feed themselves without worrying about what will drip down the cast or get in his hair. It is going to the park and not worrying about pebbles down the cast or playing in a sandbox.  It is swimming pools in the summer and baths at bedtime.  We make due, but this isn't normal.  I envy those who are graced to have this be normal.  I am grateful William doesn't know any different.  I look forward to the day when normal is more than just a word, but once again a reality.  For now we are going to celebrate the last 3 days of Independence!  It was a blessing we didn't plan or anticipate and made so sweet by the friends and family we shared it with! 

Friday, June 18, 2010


It has been over a month since I have found the strength to post to the lucky cast club.  As my friend Chrissy wrote in the last post I have been suffering from PTCD.  So here is the update.  William is in Cast #3.  It was applied May 10, 2010 at 16 months old.  William achieved 10 degrees in cast with no change out of cast.  It was the no change out of cast that was the hardest to deal with.  I think I realized in my downward spiral, I have no control over what his tiny spine does.  I had to pull myself up and find Control over something.  It started with simple concepts and has since grown. 

We always do a toy drive for our trips to Chicago.  This has been small to date.  Our last drive was with a fabulous group of women from my mom and Aunt Sally's book club.  They were able to collect 3 shopping bags full of new unwrapped toys and books.  The hospital was so thankful for the donation and it brought so much joy to so many little Shriner's patients.  Well the toy drive has grown thanks to my brother in law.  Expressway Auto dealers has agreed to help us with our summer toy drive efforts.  They are going to set collections centers up at each of their dealerships.  We will be collecting new unwrapped toys, books, videos, portable DVD players, & new Britax carseats.  This is going to be wonderful! 

In the search for a Britax carseat for a tiny cast club member, we stumbled on several gently used Britax seats.  One of my dear friends found a couple more.  She then proposed collecting these seats, safety certifying them and distributing them to cast families.  Carseats4casters was then born.  This program is in the early stages of starting, but so are most great ideas!  This new project has given me the next burst of energy I need and a renewed feeling of worth.  Stay tuned for more information on carseats4casters! 

I still can't control many things in my little lovey's life.  I can't change his physical health, but in all the things I can't control I have found so much good in the things I can control.  William's journey can help others. There is so much positive to come from this crazy condition. 

Love to my friends and family. Thank you for holding my hand while I was wallowing in self pity.  I can't promise I won't find the darkness again, but I will promise to let you all know when I see it creeping my way.  Spread sunshine all over the place and put on a happy smile!

Wednesday, May 19, 2010


I have it. My friend and fellow cast Mommy told me of this condition. P.T.C.D. Post Traumatic Cast Disorder. I'm stealing it forever.

I have been trying to be so courageous and strong these last several weeks. If you put on a brave face, others see it and believe it and then sometimes you start to believe it, too. Others worry and share their love and concern, which we are so grateful for, the week up to the cast and the week after the cast.

But it's like a death. Sooner or later, lives go back to normal and people move on....except we don't. We still mourn, wallow, dive into our depression and brave the storms of living with scoliosis and cast life.
This week it sucks.

Up until this week, we have been fortunate to not have to deal with too many cast issues of blisters, pain, discomfort, etc. or soiling. We are lucky in this because I have been told it is NOT fun. I feel like I have not fully tackled the trials of cast life because we had been so lucky. Well truth be told, luck runs out.

Monday morning started as lots of sucky Mondays do: dreary, rainy and wet. Well, ours was that. Wet. Jackson woke up and smelled like a porta-potty. His cast was soiled with urine and it pained me to hold my son close. How awful is that? When you can't even bear the odor of your own child, do you know what that does to you?

I spent the day sulking. I hit the wall. I went to my wallow place and threw myself a pity party. Except I was the only invitee. Well, actually my children indirectly reaped the benefits of the party with my sour mood and less than perfect motherly manner.

I suppose it just hit me that day. My son IS different. I had never allowed myself to think that way because I kept telling myself that he is isn't. I forced myself to believe that scoliosis wouldn't set him apart from any other child. But it does. And on Monday....everything about PIS got to me. The pee, the 45 minute process of having to remove all of the tape, the cotton, scrub the t-shirt, re-tape, only to have him soaked again on Tuesday morning. How this summer will be so stressful and hard because I'll have to keep him from swimming with his twin brother and big sister, how the closer he gets to a new cast, the less he sleeps because he grows out of it by week 10. There is a big list, but I'm not going further with it.

So, I resolve....I have PTCD. There you have it.

Saturday, May 1, 2010

A new day!

I woke this morning very early with names running through my head.  I am going to list them now so you can say each one yourself.  Adelyn, Drueman, William, Jackson, Makenna, Max, Cadence,Giana, Sage, Grace, Dylan, Kiera.  The list can go on and on.  This is the reason I created the blog.  It records our life, but it also shares theirs.  It is a reminder that there is strength in numbers.  Strength in friendship.  It is a reminder we are not alone.  It is a reminder that this to shall pass as some of our little ones above are moving past the casting process and into braces.  It is a reminder that whatever the road throws at us, we will not be alone on the road.
     We casted off last night.  His spine had taken a bit of a crazy turn I am guessing because of a few pieces of bark from the playground that been applying pressure on his spine.  It was a shock and I panicked.  I posted on facebook with his pictures and then came the rescue squad.  The parents of my friends above were there to reassure, hold my hand, show me the silver lining.  In every change in treatment, there is going to be the silver lining.  We may not see it right away but that is why we have our friends and loved ones to show us.
       Ok so now to Splish Splash.  Bath time was a family affair last night.  William and his big brother played with new bath toys as mommy scrub a dub dubbed the dirty boy.  There were the things I could identify (dirt, crumbs, bark, a raisin, etc...) and those I couldn't or should I say wouldn't attempt to label.  When he started to prune Daddy stepped in with our Elmo hooded towel and carried the little bundle to get ready for night night.  It takes the lotion and rubs it on the skin or it gets the hose again.  Daddy did the lotion & about halfway through I realized he didn't have a diaper on.  That was a close one!  Careful daddy that thing is loaded.  Once our little giggle box was in PJ's it was technically 2 hours past the 8 o'clock bed time, but the smiles said it was OK.    We played until exhaustion had hit me and then we all climbed into the same room for sleep. 
        For those who really know me, I am screaming inside.  It is the names above and the precious boys I share my home with that guide me through the mania.  I am firmly planted in the here and now.  I am not going to waste precious energy with the what might happen game.  I can only control the moment I am living and if I waste it worrying then I wasted something special.  Hugs to all our family and friends!

Friday, April 23, 2010

New Friends

There are two new members to the Chicago and Cast Club Group.  The first is sweet Adelyn.   Adelyn is a sweet 7 month old little angel from Evansville suprisingly enough.  The more ironic part is that Adelyns mom is William's case worker with First Steps of Indiana.  She is in Chicago right now for her first appointment. She will be casted June 10th for the first time.  That will give us all a little time to get her prepared for this new cast world. 
     Our other new friends are Giana, a 3 year old little joy from the Chicago area.  Giana has congenital scoliosis and was casted in Chicago earlier this week.  Her sweet mom has been through so much and without the support many of us had from fellow parents until after this cast.  What a brave family!  Welcome to our new sweet friends! 
       I am so thankful for my Chicago Cast family as well as my wonderful friends from hospitals in St. Louis, Salt Lake City, & Portland.  This process has built a large family of support and comraderie.  What brave little people there are in this group!  Keep our new friends in your thoughts.  The beginning is so unknown and scary.  All the instructions in the world can't prepare you for what will happen.  They will thankfully have the full support of our tight group of Lucky cast parents. 

When we first started this process we felt so alone.  Then a kind word of encouragement turned into lifelong friendships.  There are some in this group who are nearing the finish line of this journey, others of us are taking detours, some are just beginning the race and then there are those of us who are not sure of where we are.  The one thing I can say is thankfully I have my friends to join me for the journey!  Love to all.

Stay Tuned for Next weeks post....Splish Splash he is taking a bath!  Countdown begins! 

Friday, April 16, 2010


The "Why" game is a game we all play on this road.  Why does my child have this condition, how did it get missed for so long, why didn't the pediatrician see it sooner.  I did this as well as bargaining, looking for different options, and questioning everything.  At some point peace set in though.  Peace that I can't change the past and can only confront what is in front of me.  Peace that although my pediatrician might have missed the signs earlier, he won't miss it again.  Peace that my surgeon has my childs best interest at heart in his treatment decisions.  Peace that we know what it is now and will not have to face that worry again.  I don't think William was hand picked for this condition by God.  I think it is too cruel to think God causes these things to happen.  I think it just happens sometimes.  So the question comes how do you stay in this peaceful mindset when the panic starts to creep up at each cast change. 
           Ok so the last question brings me to our current position in casting.  We are 2 weeks out from cast #3.  I secretly always hoped we would be the lucky percentage that resolved in a few casts although the numbers were always stacked against us.  Chad and I have noticed William starting to stand and walk tilted as he did prior to his first cast.   I am not sure what this means, but Chad looked at me this morning and said are you prepared if the numbers are not good this time.  I said Yes of course, but something hit the pit of my stomach.  I am not sure you are ever prepared for that set back.  We are however prepared to stay the course.  We will cast as long as casting is an option.  The window for postive results is so small, we want to take advantage of every minute of it!  Cast life is not ideal and we are finding the summer is going to be a challenge to say the least.  Cotton, plaster, and fiberglass are not exactly cooling, but the alternatives for kids not ready for bracing is surgery and I am not willing to put William on that path without exhausting our cast options. 
           We are charged with protecting our children.  We were given them to keep safe and show them love.  Scoliosis hasn't taken that from me.  We still have hugs, laughs, and smiles.  We still have tantrums and tears and all the things that come with being 16 months old.  I am in control of his future....or at least that is what I keep telling myself.   

Thursday, April 8, 2010

Tiny Blessings

This is Drueman!  He is my friend Christina's little guy who is William's age and started casting in St. Louis the same time as our little man.  He went yesterday for cast #3 and they found Drue was at 13 degrees and the doctor chose to put Drue in a brace for now rather than re-cast.  Drue did it!  He went from 40-13 degrees in 2 casts.  He gets a much needed reprieve for the summer.  Little Drue and his precious mommy give us hope.  Hope that casting can work.  Hope that William can achieve the mark as well.  Our journey will be a little longer, but my friend will have the answers when we make it!  YAY DRUEMAN!  Splash away this summer for William!  Swim, bath, and be as carefree as a 17mo can be.  Run and climb for you now have endless room to spread your precious wings.  Someone read my last post....You sent him prayers and you sent us hope!  Keep straight thoughts in your prayers for Drue.  Keep him at 13 or resolve it entirely.  We all deserve a little light in this tunnel!  Hugs to Drue, Hugs to Christina and Jimmy(Mom and Dad), hugs to Tryston and Grace( big brother and sister)! 

Friday, March 26, 2010


I find this week with hope and sadness.  We have our next cast date May10th.  I always become a complete crazy women when the new cast date is set.  How many kids are on that date?  Where are we in the mix?  What will his numbers be?  When are we going up?  Will we bring Cody?  It runs the gammit of crazy for me.  I usually start to think about taking the cast off.  What date will we do it?  Is that date to early or to late.  I am telling you my mania kicks in high gear.  I am trying to control it this time.  I also start thinking about the process.  We are only 3 casts into this after this cast and God know we are a long way from the home stretch. 
      I wanted to take a little time in this post to let you into the cast lives of our friends as well.  Max will be getting his last cast before the summer.  He has fought over a year in cast and needs a break.  Please pray that Max will have a nice summer break with no regression in his curve.  Makenna and Jackson started this journey with us.  Jackson will be casted in April a few weeks prior to us and Makenna will be starting cast number 3 on May 10th with us.  Pray for good correction for both these precious little ones.  Grace is finishing her cast journey and is having problems with her bladder now.  My friend Jane has been through the ringer.  Grace started with surgeries for Hemi and then casting, and now when she sees the finish line she is faced with this new hurtle to jump.  Keep Jane and Grace in your prayers.  Dylan and his family are facing the surgery hurtle.  Where will they decide to have the surgery?  Will they stay at Salt Lake City or have it done in Canada which is home.  Pray for Dylan and his family.  They need strength in making this new leap in the Scoiliosis journey.  Kiera is heading for a new cast.  She has had a uphill battle trying to balance curve and rotation.  Prayers for Kiera.  Drueman is Williams age and started casting at the same time.  He will go for his check and cast #3.  Prayers for Christina and Drueman.  I recently read the Caring Bridge for a four year old little guy who just had Dual Rod surgery after his casting failed.  He is having such a tough time with pain during this process and they are having problems stabilizing his BP with all the combinations of pain med they are trying.  Pray for Matson and his family.  Sealy's daughter, age 9, recently went for X-rays only to find that they believe the doctor is not being a 100% truthful on numbers.  Sealy is facing the fact that a year has been lost in brace allowing her beautiful girl to progressively get worse while in treatment.  Pray for Sealy and her gorgeous girl.  There are 1000's of other little ones out there who are struggling with new hurtles in this journey.  Please send prayers for all of those out there who are in this process. 
      My heart is heavy with dread for these little ones and opens my eyes to what might lie ahead for William.  But for the grace of God goes I.  I can't get that out of my head this week.  But for the grace of God goes any of us on this journey.  Casting is a best practice.  It is not a guarentee.  I have been told by so many "at least he doesn't have cancer or heart problems".  Yes for that I am thankful.  I will have to say this journey can't be compared to anything like that though.  I can't put myself in those shoes other than to know the helplessness many parents must feel.  Infantile Scoliosis is a lifetime of worry.  If casting works, you have braces and constant monitoring.  If the casting isn't a cure then you face surgery that will last a lifetime.  Either path leads to a lifetime of worry.  We try to make our current life the new normal, but I even see in my rock of a husband crumble at times...especially when he talks about our out of cast week.  This is the heaven to our journey.  You hug and squeeze your soft toddler for 7 days and pretend the armor will not return.  Then you take the 6 hour drive to Chicago and sit with your loved ones and talk about anything but what will happen in the morning.  You pretend...and when the morning does come you go into stoic mode and start the process again. 
            Lift these little ones up to a higher power this week.  If prayer is not your thing, then send them hope.  Everyone has hope it is what gets us through the day.  Love you all my family and friends! 

Hold my hand and I will hold yours. Squeeze it tight and I will protect you my little one!

Friday, March 19, 2010

Support Groups

I have actually debated many times about posting this topic, but by God this is my blog and it is what is on my mind right now.  So here goes nothing.  I am a member of three support groups for Infantile Scoliosis.  I have taken heat from family and friends alike for putting to much weight on the people I meet on these groups.  It is hard, you want to meet and talk to people who are traveling your same road, but you also want your family to feel a part of the journey.  It is a narrow path and you don't want to have people telling you stop talking about all this and yet it is very nice to have someone say I know exactly what you are talking about.  I have made really good friends on this journey from all the support groups.  I have also encountered those people my family have warned me about on this path.  So here is the blog about my encounter with support and not supportive groups. 
           My first encounter with a "support group" came shortly after William's diagnosis and immediately before his first cast.  I met 4 women from that group who will forever be a part of my life.  Cara, Amy and Chrissy are my chi-town posse! Then I have my St. Louis Sista Christina who has our little Drueman who is a month older to the day then William.  We are the 5 musketeers who are taking Chicago/St. Louis casting by storm.  They are my shoulder and such when we have poop up the back or puke down the front.  They have been there done that and sometimes on the same day as us.  Love my girls and don't want to discount their blessing when referring to this group.  That would be one of the last blessings I have gotten from this group.  This is a long story so leave now if you have no energy! This first "support" group has proven to be a disappointment to me.  There are good people on there, but there are also many people with their own agendas on that group.  Topics that should have been open for discussion are really open for one way of thinking.  This group is run by a not for profit who is supporting one way of thinking and I am not that one way type of girl.  Casting is not a one size fits all type of treatment.  It is treatment run by surgeons all of whom are working to perfect the technique modifying the cast to the specifics of your child.  This in my opinion is what makes casting so unique.  You childs care is designed specifically for your childs curve.  Higher, lower, need for shoulder support, no shoulder support.  William has had 2 casts and each with different results, each with different cut outs, very unique to William.  I fully support this diversity.  It is what makes the process individualized.  I have been taught humility in this process and given an open mind by so many of my friends.  So back to the point.  This first group is backed by an outreach program with an agenda to get all kids to "approved" centers with the "right" table and the "correct cast".  This means there are maybe 10 centers who have been trained by Dr. Mehta, the doctor from England who published the modifications to the Risser cast. So this was my first encounter with information on casting.  I spent about a month listening to how my child should have this and that and if not he would have deformity and destruction.  Scared the living crap out of me.  Then I started looking at pictures of other kids, reading how each center does things, talking to other experts and no one referred to things the same way as this group other than the group members.  Topics would come up ranging from taking off the cast, raising money for your center, padding the cast, clothing to wear, etc... I learned quickly that your opinion needed to match that of a select group of people or you would be accused of posting harmful information.  Tensions escalated and many of my friends were removed from this group for being hostile.  This disease is hostile and if something works for their kids and is approved by their doctors, it isn't harmful, it is different.  I was made to feel selfish for raising money for my center and not for the outreach program.  I still can't put my head around that.  Yes Shriners has endowments for billions of dollars, but they support many centers with annual expenses that are far outweighing the donations coming in.  I plan to continue to support my center in an effort to allow my son to be cared for his entire childhood and the opportunity for other children to benefit from this same care.  I have stayed on this group, but I don't post my opinion unless my friends are being attacked without the benefit of defending themsleves.  This group is a clique and seeks to exclude anyone who they deem not worthy of spreading their message.  It has the friendly appearence, but I have not found the inside of the book to support the cover.  Ok so this is the downside,I sugar coated, to support groups now to the up. 
             I belong to two other groups, one was started by a wonderful women who wanted a group unlike the other.  It is a small group and is mainly supported by those who were removed from the original group.  I have friends on this group and we post updates on our children as well as seek help with specific scoliosis related problems.  We can share ideas and whether everyone agrees with what you are doing or not,  your thoughts are supported. I have met Jane, Darrell, & Liz on this group and love them!  This group is quiet, but I know it will be there if and when I need something. They are the family of the support group community. 
          The third group I am a member of is the meat and potatoes of the support group community.  It is facts and published articles to support any issue your child may face whether infantile or juvenile scoliosis.  Post a problem and you will probably have research at your fingers to give you options and knowledge.  This group in contrast to the first doesn't advocate a center or technique.  There are people with success stories and those with roadblocks in this journey that post.  They show you all sides to the disease and treatment methods.  I definitely use this site and have found it's moderator to be a spitfire!  She isn't afraid to tell you her opinion, feels no need to play favorites and is a complete wealth of knowledge.  I like her spunk.
            The unsoung heroes of my support process would have to be my family.  Immediate family here with me, cousins from Kansas City, Chicago, Mt. Vernon, Tennesee, friends in North Carolina, Canada, Florida.  They listen, laugh, cry and pray with me.  They can't offer guidance but who needs it when you have unconditional love.  The cutest support comes from the second graders at Holy Rosary.  They are precious and caring, always kissing William and letting him know they are there.  They each made cards when we left for the first cast and I have kept them with us for each trip.  They give us support to read messages like "We Love you and hope it won't hurt".  Kids with differences are teased in life.  This scares me so much, but I know we have 40 kids that are going to make sure William's journey isn't filled with these same road blocks.  I am tearing up thinking about these kids and their families.  I wish you could see them with William.  It is the most touching thing to see his face light up when the girls swoon over him and the boys knock on his cast and call it armor!  They are the most uplifting of the support groups, not for the support they give me, but for the support they give my boys!
           The moral of this family in many ways was right, there are those out there that are in it less for support and more for there own praise.  Their self worth is somehow linked to how many people think they are wonderful.  There are also those just like me who have a child with a crazy condition who just need a supportive go ahead at times.  I am very thankful for these.  And then you sometimes look around and realize the support you needed was right in your own backyard.  For that I am the most thankful....heres to you my unlabled support group!  Without you the past 5 months would have been horrible.