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!