P.T.C.D.

Yep,
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.

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!

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! 

Why?

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.   

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)! 

Prayers

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!

 

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 story....my 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.