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.