Monday, July 25, 2011

Cast #9

It's amazing to think less than two weeks ago we were soaking up the sun and sea in Florida with our beloved family.  The healing of that shoreline is still enough to fill my soul with sunshine if I close my eyes for a minute of silence.  I remember waking on one of our final days at the beach house, sitting on the back porch before the house woke and feeling the sunrise hot on my face.  The sound the ocean makes was like a gentle lullaby for my tired soul.  As I sat in the chair I could feel my body moving ever slightly back and forth as the tide and waves came crashing into the shore.  I closed my eyes and told myself no matter what next week brings remember this feeling. 
      Fast forward 9 days later and I am just now ready to digest and share what our return from the shore and trip to Chicago had to offer.  We spent one day home from Florida and then it was time to pack up and trek to Chicago.  We opted to stop in Terre Haute and watch Harry Potter to break up another day of travel.  The kids were sick of the car and this was honestly one the best things I think we could have done for all of us.  We arrived at the hotel long enough to eat and sleep.  6:30 and we were headed to the hospital.  We were met in the parking lot by my friend Tracy.  She so kindly decided to sit with all the Lucky Cast Club families that day even though her beautiful Massimo wasn't scheduled for 4 more weeks.  I can't thank her enough for giving of herself to all of us tired families.  Our room was a bustling home for LCC families and our sweet friends the Dobbs family joined us next door.  That was one of those days where you wish they could squeeze just one more bed in the already crowded room.  Kiya, Giana, & Iljiana were the other 3 beautiful ladies in our William's life for the day.  The day was long and stressful and yet I was completely surrounded by the love of my dear friends. 
      William was number 3 of the day.  We followed the routine and went to x-ray then back to get ready for William to head to pre-op.  We looked at William's film and both felt it looked better than the last.  William went in and an hour later Dr. Hammerberg came out.  He showed us the graph and my eyes were trained in the normal position around 30 degrees, only this time there was no mark in the 30 slot.  I looked at the graph and looked at Dr. H.  Does that say 10-11 degrees.  He said yes.  Tears were forming and I will tell you they haven't left yet.  He said yes that is a great number from where he started.  He said I am not ready to brace him yet though.  He has some alignment issues and I think casting is where he needs to be.  See you in October and we will just stay on this course. 
      I guess I need to explain what we were seeing.  William is at 11 degrees out of his cast.  His blessed little spine gained 20 degrees correction and held it on his own for his 14 days out of cast.  This to me is nothing short of miraculous.  A thank you is needed to all who have prayed for our William and a special thank you to my niece Emily who spend 2 hours praying at the Grotto at Notre Dame for our sweet boy.  There is  a special place in Gods ear for the prayers of youth.  At 11 degrees most kids are given the go for one or two more casts then onto a brace.  William upon careful scrutiny doesn't have the normal appearance of 11 degrees.  His torso alignment is still off and his rib cage is not growing evenly.  If they were to brace him with this abnormal growth pattern, his spine would begin to grow unevenly in a short time frame.  Allowing some time to rejoice at our progress and cope with the prolonged casting we are finally at a point where we can share our news. 
      There is a huge lesson I have learned from this news.  There is guilt in all aspects of this process.  Guilt when others reach a milestone and you are stuck and guilt when your child reaches a milestone and others don't.  I had a moment with two of my dearest friends on cast day and shortly after.  My beautiful Sarah had a horrible day of waiting with our beloved Giana.  She was #6 and we nearly beat them home from Chicago that day and they live in a suburb of the city.  When Sarah asked me what Dr. H said I had such immense guilt that we were given our news and our beautiful Giana might not.  I said it was good Sarah but hesitated to say the number out loud.  She said Catie, we are best friends and share everything good and bad, don't ever not tell me.  As I told my Sarah I saw the joy in her eyes.  Joy for my sweet boy.  We have talked nearly everyday since and she has helped me with all my irrational and rational thoughts regarding our path.  I will never not tell you again my friend.  To my other dear friend Darrell and his sweet Dylan.  Thank you for erasing my guilt with you as well.  I can't help but still have small pangs of sadness when I think of how long you have been fighting for your boy but know it is your fight that has always given me strength to endure. 
        A final thought as I move forward in adjusting to cast #9 and all those to come ahead: The Lucky Cast Club will only move forward and grow if it has a strong foundation to build on.  It was started with families who some are moving forward and some are still in the process. It was started to be here supporting families long after our children are grown.  Cast #9 has renewed my resolve to keep us moving in a forward momentum and nourishing the roots that are taking hold in the centers we support.  Onward and Upwards my friends. 

Sunday, July 10, 2011

Cast free and mixed emotions

We cut off cast number 3 today. While it was cast 3 in reality it was more like cast two since we had to take such a long break between cast 1 and 2. But regardless the blue cast is now in the garbage.

Sweet Kiya, aka my string bean, is itchy, bruised and slightly off balance but is looking straighter. I am so excited for her to be able to enjoy summer toddler fun minus the cast for one week anyway. She will get to run in the sprinklers with her friends and take baths and enjoy.

I love the squishy hugs and the pure joy that encompassed her once we got the cast off. She was so mad when we were trying to cut it off and once it was off you could just see her face light up in pure joy.

This week of free is always a little strange for me. I try to enjoy all the hugs and fun and yet I watch and wait to see if/when her back will bounce back. I pray that it doesn't but we just don't know. That is the worst. She looks so straight right now. So straight, tall and skinny.

So we head to Shriner's on the 19th for supposedly a pink cast. She keeps saying she wants a pink one. She said that last time and we came home with blue.So we shall see.

Kiya truly amazes me. Nothing stops her. No sooner than we cut off her cast did she stand up and try to awkwardly walk away. She was a little off balance. After her bath she was back to running. She is nothing short of an inspiration. She is 2 1/2 and has a beautiful outlook on life. I love her goofiness, her stubbornness and her dare devil spirit. All of these traits are serving her well on this journey we are on. This kid has taught me so much about life and I am truly honored that I am her mom. I am so very blessed in so many ways.

Wednesday, July 6, 2011

The Amazing Iron Will

Names have been a thing we thought about for years.  With a last name like Diefenbaugh, we knew our kids would need strong names with short spellings or they may never leave Kindergarten.  As we were choosing for the boys, it was important to keep family roots at the heart of what we chose.  My Father was James Dennis, his father James Heinz, hence Cody James.  For William it was even simpler: a girl would be Elizabeth Emma after our beloved aunts who had passed and if he was a boy William Jack after Chad's father, grandfather, great grandfather & Jack from his beloved step father who passed away shortly after we were married.  When our beautiful little man arrived in the big world I would have never dreamed how the meaning of his name would actually fit so beautifully with his personality. 

William comes from the German Will or Desire and Helm meaning helmet & protection.  I can't think of a more appropriate name for our little brave warrior.  His nickname Iron Will goes back pre-kids.  Chad and I were stationed in Norfolk Virginia shortly after we were married.  We lived in the Navy lodge while Chad was in school.  With a very small space and extremely cold temps in the winter we watched a ton of movies.  We were big fans of some Disney movies the first: Yellow Dog the Journey home which is where we were determined to get our beloved Yellow Lab Hunter once we were settled in a permanent home and the second and favorite was a movie called Iron Will.  In 1917, Will Stoneman's  father is killed in a mushing accident leaving Will to care for his family. Needing money for college and to save the family farm in South Dakota, Will decides to travel to Winnipeg, Manitoba to take part in a dog-sled race from Winnipeg to Saint Paul, Minnesota. The young man prepares both physically and mentally for the harsh weather and terrain throughout the race. During the race, Will becomes popular with the newspaper media as reporter Harry Kingsley tells about Will's strong courage in what he must do. Will beats all odds and through integrity and spirit wins the race. 

When William was diagnosed with Infantile Scoliosis, all I could think was my sweet Iron Will, so young to face so much.  My feelings of poor Will have since changed to complete awe and admiration.  He is no longer the little helpless baby, rather the true spirit of his nickname, Iron Will.  He has an amazing comprehension of what he is going through and an incredible spirit.  I am so proud of my little Wilhelm.  I am blessed to have been given the honor to spend my life with such amazing boys and to learn from our little spitfire.  He gives me hope and strength when it is somehow diminished.  He is my Amazing Iron Will.  Looking forward to spending a week in a place away from reality, a place of peace, somewhere only we know. 

Tuesday, July 5, 2011

Frustration and heartbreak

I knew about how summer and casting were like oil and water....they didn't mix well! I was going to be proactive about this and try to not prohibit Massimo from missing out on summer fun... Including water activities. My mother-in-law made a vinyl water resistant smock for Massi that had Velcro at the crotch and in the back. So we had him in a swim diaper, swimming trunks, a swim shirt, and the smock. He was able to go in a sprinkler and not get the cast wet! I was so happy that he wouldn't miss out on all the water fun all summer.
This weekend we went to my sister's camper and they had a 18 inch pool. We put all the items on him and as soon as my husband got him there, he slipped and fell face first into the water! My husband picked him up and we knew the cast was wet! We went back and try to dry him off. massi ended up with such chaffing from the water getting the cast wet and dripping down to the bottom of the cast.He woke up in the middle of the night screaming in pain.... I felt awful!!!
The next day my husband decided to ensure he would stay dry. He put a garbage bag over his top half and tucked it in at the bottom of the cast. He then put one on from the bottom, cut room for his legs and taped the bags together! Then put all the addition things I mentioned above on! I felt so frustrated and sad! I have to resort to garbage bags so my son can be in the water! This wasn't fair! At that moment I hated scoliosis and the cast!!!! I couldn't relax because I was a nervous wreck the whole time worrying he would fall in and our garbage bag idea failed. As I saw all the other kids freely frolicking in the water,I became resentful and depressed! I cried later that night thinking about how much more am I going to be able to handle with Massi and this summer!My aunt hugged me and said to just think about how close he is to being straight and how well casting has worked for him. She reminded me that he won't be like this forever. I started to feel a little better and just looked at my Massi! He always has the best disposition and no one would think he was going through all the things he is right now! He is my reason for having faith in casting. Anytime we mention his cast, he proudly lifts up his shirt and says, "cast"! it is as if he knows it is helping and he proudly shows everyone!