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! 

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!

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!  

http://www.youtube.com/watch?v=DWdGRl8hXN8

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 stuff...it'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!

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. 



What we are all about

http://www.youtube.com/watch?v=bHSNSB70U80


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.