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. 

Toddler Terrors

I often question what is worst the hormones of a teenager or the terrors of the toddler.  Although we have recently witnessed both with Madame Emily, I have to conclude the terrors of a toddler are far more fierce.  Presumably innocent, the toddler is a force to be reckoned with.  They are cute and cuddly one minute and out of control the next.  You can reason with a Teen, where the toddler is often unconsolable.  We are facing this on a daily basis in our house.  Although it would be easy to relate behavior to his cast, I have come to realize this cast has little to do with our recent outbreaks of terror.  William is hellbound on two feet now.  The crawl at least slowed him down.  Oh how quickly they go from toddling to running when there is something he really wants.  No longer will he let us carry him to the car instead he throw his weight around and yells "awk" which means put me down you stupid cow and let me walk.  I have almost dropped him more times in the past week then I care to count.  I guess the answer is to do his evil bidding or suffer the consequences.  Welcome to the wonderful world of the walking toddler. 
      On a side note...this week brought another trip to the pediatrician.  Both boys have been hacking for over a week.  Both coughs seemed to have no end in sight so off to Dr. Phillips we were.  Cody in the car decided he was recovering perfectly, cough cough.  I told him to please tell the doctor how he has been so I don't look stupid.  He reluctantly obliged when I assured there would be no shot involved.  William put on his Mr. Cute routine and I though oh crap another $210.00 down the drain.  Dr. Phillips luckily saw through both boys smoke and mirrors.  The funny part was when he asked me when this all started and I had to go back several weeks to the vomit and fever at Wilson's BBQ to get back to when the cough really started.  I am sure he was thinking get to the point woman!  Anyway Cody had sinus infection and bronchitis while William claimed an ear infection with identical bronchitis.  Two prescriptions for Amoxicillin and several days later we are starting to see health at the end of the tunnel.  I swear we need to just pipe it through our air ducts in a mist as a preventative.  Well tantrum #12 of the day is starting so this is tata for today!  Wishing you health and wealth and a tantrum free afternoon!

Class without Cash

Shopping for clothing for a child in cast is sometimes like a uphill battle.  The sizes seem to change with each cast and finding clothes that will fit over the cast is sometimes tricky. With spring/summer approaching the time came for another wardrobe change.  Anyone who knows our family know 2 things about us, 1.) I love to shop and love to dress my kids in nice clothes, 2.) My husband could care less what either boy wears, although he prefers camo and comfort.  Last summer Williams wardrobe consisted of John john shortalls in seersucker prints and Shirtalls in assorted nautical or coastal prints.  If it had a crab, lobster, boat, or anchor it was on his cute little butt.  Last night I attended our semi annual parent clothing swap night.  A large group of parents prepare and tag nicer clothes to sell to each other.  Williams wardrobe from last spring/summer consisted of many precious articles.  I am sure they were snatched up and will be worn by another little angel this summer.  I like the thought of my hardwork and dedication to shopping being shared by another parent/child.  Ok so here comes the kicker: I had a babysitter, time to look, and a very specific idea of what his summer wardrobe would consist of.  The downside, my specific thoughts didn't seem to translate to his current cast condition.  John Johns are precious, but have lining in them that is too tight around his bulky cast.  I even looked up in the 2T section and found very little to match my idea of what he should wear.  I refuse to compromise, but fear the wardrobe of last year will not work this summer.  I picked up a couple of overall outfits and shorts with T-shirts, but I still haven't felt the feeling of accomplishment that came with last summers wardrobe.  I refuse to give up without a fight.  I believe my child can still have class without having to drop alot of cash.  So the hunt will continue.  Keep us in mind as you pass the seersucker and crabs.  We will find the perfect fit without resorting to Camo!  I will try to post some pics of our purchases later! 

Four letter words

There are a few things that strike fear in the lives of cast parents like poop and puke.  Between Friday and today we have been faced with both.  Friday night started like any other Friday.  William had shots Friday morning.  I picked three kids up from the Rosary and headed to the mall for a little retail therapy, then dropped 2 off at their home, planned dinner with my father in law to drop Cody off with Granddad.  We tried a new BBQ place on the westside for something different.  Dinner was great, Catfish fiddlers for the Catholics in the group, grilled cheese for the littlest William.  Dinner was over and I took the big guy to the bathroom.  Before we finished I heard the little William start crying and hurried Cody along.  When I exited the bathroom, the scene had unfolded, Big William, my father in law, was holding little William and the entire left side of his black shirt was covered in white.  "What the heck is going on" was the only thing I could think.  Daddy was holding a pile of paper towels, the owner was frantic and other guests were gagging.  Oh yeah William had puked everywhere.  I grabbed him as Chad started to gag, we left the diner, Granddad went to the bathroom to remove his shirt and Daddy paid the check and ran.  The owner actually said come back again, goodness knows the man was just being nice.  We practically cleared his establishment on a Friday night.  Fevers all night and most of Saturday.  Sunday was thankfully uneventful.  Jump to Monday morning....
       Monday morning promised to be a race.  Chad had a client he had to meet at work early.  I had two kids to get moving so everyone was on time.  In order to get my shower, I put Elmo on in the living room for little man.  I took a quick shower and went to the living room to check on the Elmo addict.  I smelled it long before I entered the room.  No big deal I thought, we have been lucky so far with it not exiting the diaper.  Placed little britches on the changing table and thought I will change him, dress him and then blow dry my hair.  Unzipped the sleeper to unholy hell.  Poop everywhere!  Up the cast, on the cast, around the cast.  Oh S&*t.  Chad!!!!  Help!!!!  We tried to wipe what we could, but the poop was up to his mid back.  Chad went to get the cleanser, a bowl of water, a rag, new tape and cotton.  We untaped the sweater that was designed to protect their skin from the layer of cotton and guaze that is then covered by plaster and finally fiberglass.  The plaster and cotton can't get wet so this gets tricky.  Pull the sweater out as far as it will stretch and until you can't see poop anymore.  This is usually a little ways up but you can always find clean white sweater, not today.  We ended up having to floss wipes through the hole on the side to try to fish poo from the upper portion of his back.  Once you have the poop out the best you can it is time to cleanse the sweater without getting the cast wet.  Very hard job.  Once it is as clean as it will get you have to blow dry the sweater, replace the cotton padding the edge and retape the entire thing.  It was a 45 minute job with everyone involved being late going where they need to be.  When I finally reached work late I had the feeling as if I was a rubber band ready to snap all day. Thankfully I work with good people they embraced my inner witch and let me have my day. 
      As you see these two four letter words can conjure so many other four letter words that I won't say on a family blog.  William has earned his nickname "Stink" this weekend.  I pray this is it for the week.  My weekend blog will need to be sunshine and roses to make up for the four days we have just been through!  If the smell doesn't subside soon, I will resort to febreezing the baby!