Sam Mayer Update

It has been a while since I have had time to blog.  For those who are new to the blog, I share my journey with Sam, the good, the bad and the ugly.  Sam is 13, he has Down syndrome, a brain injury, aphasia/apraxia, dysphagia, bilateral hearing loss, respiratory/immune issues and at the age of 10 we added hip dysplasia and Perthes.  But none of that...all of those labels...describes the amazing little man I spend time with each day and in my eyes he is none of these things...he is just uniquely and perfectly...my Sam. Since his diagnosis of hip dysplasia and Perthes Sam has undergone 3 hip surgeries, including a double osteotomy and an external fixator for 4 months.  The first surgery put him in a body brace for 7 weeks, the second was an external fixator (a huge halo device that was externally mounted but went through his skin, muscle and into his bones and required daily pin/medical care.)  We have had a heck of a journey and 3 years of rehab.  About 3 weeks ago Sam again lost 60% of his mobility.  I noticed a change in his gait, his movement decreased and his right leg showed physical signs of weakness...and his right leg is his good leg.  His left leg is the one with Perthes and is in a flexed position which causes him to walk on his tip toe on the left side. I have watched Perthes slowly destroy and twist Sam's perfect gait that we worked so hard to achieve after his brain injury had weakened his right side.  But Sam and I don't give up...so I began the quest to figure out how to help Sam regain his mobility yet again. I have noticed that as Sam compensates his gait to accommodate his hip, his right ankle is pronating inward severely causing his knee and ankle to be out of alignment and twisting. His altered gait is also twisting his spine and causing his feet to change shape.  Sooo...after checking to make sure the hips were stable I decided to work on finding someone who could help shore up his good leg so that we can hold on to his mobility and lack of pain for as long as possible.  Sam's final option for his hip is a hip fusion or total hip replacement. Due to Sam's extreme flexibility and low tone he is not even considered a good candidate for a hip replacement.  The hip fusion surgery would put him back into a body brace...this time for 4 months.

Today was one of those days that tested me...what have you learned from your life with Sam??? Sam continues to have mobility issues so upon referral from his pediatrician we went to see our third orthopedic surgeon.  To say I dreaded seeing another surgeon would be an understatement. As we sat in the room awaiting his arrival the familiar doubts entered my mind but I pushed them aside and decided that I'm here for a reason, it is always good to get a fresh pair of eyes on a situation...so let's hear what he has to say. I had given the nurse Sam's hip x-rays because in my mind a doctor should know the whole picture, what is happening from head to toe that is causing the issue. I chuckled when she asked me why I had brought a hip x-ray in for a knee/ankle appointment?  Hmmmm....could it be because I have always looked at my child as a whole, I don't piece him out, I don't only look at one area at a time but I observe his overall function.  This observation is something Sam taught me.  Sam doesn't express pain in words...he instead moves differently, moves less, or you notice a change in gait, in his stance, in his expression. You observe his frustration level, his breathing, his....just being. I believe this is a lost art in our medical fields. We think all information can be obtained through questions and speech...not so much with a child that has processing/speech issues.  We rush through appointments to get more people in but at the same time as we rush...we miss crucial pieces of the puzzle.  In my life with Sam so much is about time. Giving him time to process and answer, giving him time to complete his work/chores, giving him time to practice his speech even if he repeats things over and over and taking time to show him, teach him, talk to him...just be with him. I spend a great deal of my time observing Sam, how he moves, how he breathes, how he understands and I try to incorporate what I learn into how Sam and I interact.  Some days...I fail, miserably...but I try to remember that my frustration can't come close to how frustrated Sam must feel when he speaks but people don't understand what he is saying, or he struggles to pull out the right words, or he is unable to convey what he is feeling or thinking, or he hears only a portion of what we say or worse yet when someone underestimates his understanding and ability, spending more time thinking about what he can't do instead of working with him to figure out how he can do it.

As we waited...Sam, the boy who perceives so much so well...knew I was nervous, knew I was worried how he would react to yet another doctor.  He pinched me to get my attention and then proceeded to smile and make a face at me.  I smiled and looked away...so he said "Uh Mama" and I turned to him playing with his eyelashes on one side and his finger in his nose on the other. I laughed and said "So you are willing to misbehave to get my attention." He laughed and said "Talk to me." So we talked about the classical music playing which I said was "Bach" and Sam said "No, not bad...pretty." We talked about the picture of the foot on the wall which I said showed the bones and muscles...and Sam quickly showed me his best Hulk Hogan pose. I asked him what he wanted to do when we were done at the doctor, he said "Go home (and smiled)...um McDonalds??...zoo...Daddy work and go to movie."  I said "Woah, that's a lot for an afternoon." He said, "Good evening" which I interpreted as meaning we can do some in the evening too because he followed it with a smile and strong nod of his head.  By the time the doctor walked in we were both smiling, laughing and ready for whatever might come our way.

The surgeon shook Sam's hand and I love when a doctor will talk to Sam first and then me. He examined Sam's ankles and knees and watched him walk back and forth. He agreed with my diagnosis and Sam's need for a possible ankle orthotic and knee brace.  As he explained that Sam's posture and issues were extremely unique I only smiled...thinking to myself...you have no idea just how unique this little man is.  Although he was not able to help me, he suggested another doctor and helped me put the last pieces of my thinking together...sometimes we meet people for the sole purpose of bringing us to the next level of our own problem solving.  He confirmed that Sam needs someone who can work closely with him to design and fit him with orthotics and a brace that would fit him perfectly and would give Sam a sense of comfort or stability so that he would want to wear them. Sam is a perfect gauge of if something works or not.  He has high sensory issues so he never wore a hat but when he wore a baseball hat with a bone conduction hearing aid on it he found out he could hear and understand better so he continued to wear the hat until his hearing improved and then he promptly handed it back to me after wearing it for 3 years. When we rechecked his hearing both ears had improved to the bottom of the normal range and a hearing aid was no longer needed.

Soooo....I need the guru of orthotics.  Someone who is keen on observation, ready and willing to take on a challenge, thinks outside the box and can fit and alter an orthotic to Sam's twisted form.  I need someone who understands movement, non verbal communication and has the patience of a saint.  As I talked with the doctor, I had my Sam moment...the surgeon was talking about a doctor from Children's, someone we had seen before...and my mind...well my mind was remembering a conversation with a PT about a fellow PT that was unhappy with standard orthotics and went back to school to develop his own.  I thanked the doctor, took the name and number of the doctor from Children's and then promptly called Sam's PT from the parking lot to get the name of the PT who just may be my knight in shining armor.  Sam stayed quiet while I left the message and then when I put down my phone said "Okay, all done...about McDonalds???" I said "Sam, thank you for all you have taught me."  Sam said "What the heck...over der...I see Culvers" and we both walked into Culvers laughing.

I love this crazy, tragic, awful, BEAUTIFUL life! Stay tuned for next Tuesday's adventure with the PT and custom orthotic fitting....oh joy!!

Putting Things Into Perspective!!

I'm not sure if this is going to be a popular post, but then again I have always promised to be honest and to share the good, bad and ugly with those who choose to read about my journey with Sam.  And those last four words are what is really important "my journey with Sam".  I write about my experience, my child, and my ever changing perceptions of raising a child with multiple special needs.

When Sam was first born and we received the diagnosis of Down syndrome I did my research and read the books which sort of depressed me and then I moved on to blogs or at that time emails, stories and sites that talked about all that a child with Down syndrome was capable of...this diagnosis was not the end of the world.  I became empowered and when I found NACD I found a mentor Jenny Marrs and her wonderful and amazing son John.  Now keep in mind that before I had found NACD Sam had suffered a brain injury from oxygen deprivation but reading about children with Down syndrome and brain injury that excelled with neurodevelopmental programs spurred me on.  I wanted that super child, I wanted that child that was going to beat the odds and everyone was going to be talking about.  I hated when someone would talk about Down syndrome and high functioning or low functioning...none of that mattered...what mattered was how you worked with them...right???  And to be honest...at that point in our journey...I needed that hope, that challenge, that push to get involved, to jump in, to really get to know Sam. I loved the interaction with my evaluator, honestly I valued their opinion over most of the other professionals we worked with because they were looking at Sam from head to toe, they were looking at our available resources and manpower and they were devising a plan for continued improvement with what we had to work with.

When our Wisconsin chapter first started I often helped with the evaluation process and I saw children come in with Down syndrome that were younger than Sam but they were talking, walking and meeting milestones so much sooner than Sam.  I was amazed by these children and loved to see them excel...but I was also envious of strides that seem to come to them so easily, language that flowed with little to no effort, fine motor and gross motor skills that I would die for.  The parents would talk to me about their concerns and worries and often I would think but are you seeing what they are doing, are you not amazed by the milestones met?  Hmmm...but wasn't I also guilty of this very same thing?  Focusing on what Sam couldn't do instead of what he could do and how far he has come?

It was around this time I had a meeting with our pastor and as we talked he shared with me that often times when he finishes a service he has mixed reactions from congregation members.  Some are happy and then some are thinking he is talking about them and they don't appreciate his reference or opinion on their situation even though he never had them in mind when he created the sermon.  It was one of those "light bulb moments" when things in your life start to swirl around and make sense.  I'm pretty sure that is when God steps in and starts to work on your life.  I had two perceptions that seemed to run around in my mind and I'll be honest I'm not proud of either one of them.  One was that all those super kids were just really super high functioning and life was easier for them, I could compare this to the difference a parent experiences when they have a typical child or a child with special needs.  Some kids are easy and some require a ton of work.  I was just beginning to touch on the real issue.

On the other side I often read on the listserve and even have expressed myself that some parents just don't work or put in enough time with their children and therefore they are low functioning.  They aren't trying diets or supplements or neurodevelopmental programs...they are expecting the therapists and schools to get their child where they need to be. Hmmm....was I walking in their shoes, did I know what challenges they faced in their lives???  I am also guilty of wanting the quick fix, the supplement or combination that will make life with Sam easier and allow him to excel beyond my dreams. I would read on the listserve how this supplement or that protocol is doing wonders for a child...and then I would try it with Sam....and his system would react negatively...and I again would feel like a failure.  Why is that child excelling and mine is not? I would become inwardly cynical wondering how a doctor, professional or parent is benefiting from pushing a protocol.  Like I said I'm not proud of my thoughts or reactions.

Now before you think I am trashing supplements, protocols, schools or neurodevelopmental programs I want to stop you and reassure you that is not my intention.  I admire those who are breaking down the barriers, doing the research, striving to make a positive change in the lives of people with Down syndrome. Without warrior parents we would not have our children at home,  in school or receiving proper medical care.  So where am I going with this??

I don't think I'm alone in the struggle of keeping a proper perspective on my journey with Sam.  Over the years I have changed my perspective of the super kids.  I delight in hearing the stories of those that have achieved and excelled but I think we all need to look at each and every one of our own children, look at where they started and how far they have come and realize that they are super kids in their own rite. Sam has faced more challenges than most, Down syndrome, brain injury, apraxia, aphasia, respiratory/immune system issues, bi-lateral hearing loss, hip dysplasia and Perthes and yet I can truly say he amazes me.  Are we reaching all the milestones that I thought we would when he was a baby?  I'm going to answer...not yet. I think we all have to continue to try, to hope, to move forward and even if your child isn't where you always thought they would get to, acknowledge where they are at, celebrate what they have accomplished and enjoy them for whom they have become.

As for low functioning, high functioning...as a parent of an older child (almost 13) I believe we are all unique and our challenges are our own.  Sam is a super kid in my mind but can he do what the super kids we all hear about are able to do...not yet.  But from my own experience and what we have done with Sam I know that you can work super hard with a child, give them a wealth of experiences, supplement, obtain the best medical care possible and yet they will not meet up to someone's expectations. The important thing is that when you put your head on your pillow each night you know you did what was best for your child and your family. Also keep in mind that when something someone has said bothers you, is it because you have the same doubt, or is it because you needed that extra push or is it God's way of saying work harder and set your expectations higher?  There are lessons to be learned in both good times and bad.

Another part of this balancing act with Sam is embracing difference.  It is something both Ben and Sam taught me.  That just because someone looks different, learns different, talks different...it is not wrong, it is just different.  There is a balancing act we do as parents of typical and children with special needs to help them reach their full potential. Over the years I have learned to concentrate on the strengths, work tenderly on the weaknesses but always let my children know they are amazing. Self esteem is the hardest thing to regain when it has been lost.

Lastly...give yourself a break.  None of us is perfect, we all have our quirks, imperfections and challenges...just like our kiddos.  Take care of yourself, love those perfectly imperfect children, see them through a fresh set of eyes and work on maintaining the balance of what we want with what we have.

Have a great weekend!!

Finding Peace!

I hope to find time to write more in the near future now that Sam's external fixator is off.  I won't say life has calmed down because Ben is about to graduate, Danielle is driving and working, Jeff's work schedule is always demanding when you own your own business, I will be going back to work and Sam has another journey with rehab that will also extend my time and talents.  Add in a difficult journey through grief as I continue to miss my Mom and an impending road trip.  I have so many topics I want to share like our speech journey, NAET treatments, therapy for the older child, building independence and would love to hear from my readers what topics they would like me to touch on. But let's start with an update on Sam.

Last Wednesday Jeff, Sam and I again traveled to Baltimore for Sam's 3rd hip surgery...the removal of the external fixator.  I don't know if I can put into words the feeling for ME of having that device removed.  It was like a huge weight was lifted from my shoulders. No more pin care, no more gross photographs of stuff oozing or flesh collapsing or black flesh.  No more worries about him accidentally hitting the device on the wheelchair or the doorway or it getting stuck in a cushion.  Now keep in mind that's just how I felt can you imagine how Sam felt?? I think in some ways he missed it but that was short lived and he seems happier that it is gone.  Of course he wasn't happy when he realized the external fixator was gone and a brace on both of his legs took its place.  As I spoke to parents of children with Perthes and the kids themselves many of them didn't like the extension bar that had to be put on to the external fixator twice a day and at night and most of them didn't like the brace. But in true Sam fashion he would ask for the bar to be put in and he is happier with his brace on than when it is off.  Surgery is never something we take lightly with Sam but this particular surgery went very well...guess those special angels were helping him along.  Sam had a little bit of a melt down when we got to the pre-surgical suite.

I know every child is different and for Sam who has multiple speech issues, bi-lateral hearing loss, processing and sensory issues there are so many little things that can be the difference between a pleasant experience and a major melt down.  Because I am with Sam 24/7 and we have gone through a lot on our journey I can often anticipate how he's doing or in what direction he is headed.  We were originally given an arrival time of 6:30 a.m. and surgery at 8:00 but then we received a 2nd call from Dr. Standard's office that we were to be there at 8:00 with surgery at 10:00 a.m.  At 7:00 a.m. we received a call from the OR wondering where we were and when they could anticipate us.  I explained the situation and we rushed over to the hospital.  Because they were now behind schedule they were trying to rush things along...big mistake...Sam doesn't like to be rushed, he needs time to process and if he feels rushed he often feels threatened and will just shut down. The nurse went through the usual questions attempting at first to address them to Sam but not waiting long enough for an answer so he quickly withdrew from talking to her.  The dreaded hospital gown was on the end of the bed which means Sam would not transfer to the bed.  More people began to arrive and Sam unable to follow all the conversations began demanding my attention because he needed to hear my voice and reassurance that he was okay and I would be with him.  When Sam continued to refuse transferring from his wheelchair to the bed I asked if they could all leave the room for a moment and then I asked Jeff to remove the gown and the blanket from the bed. I got down to Sam's level and said "On the bed, watch your movie."  Sam smiled, stood up and allowed me to transfer him. Some things are just that simple if you respect Sam's needs and the way he communicates best. I discussed everything with the anesthesiologist explaining Sam's anatomy anomoly of 3 bronchial tubes instead of two, his floppy and reactive airway, his extra esophagul fold, his upper airway issues, starting the IV after he is in the OR and suggesting that they put it in his foot instead of his hand if they want it to remain in when he wakes up. We talked about the Versed and how I would need to administer it from a syringe with fewer people in the room and that Jeff and I would get him into the hospital gown after it took affect. This was the first time I was brought back to the OR with Sam until he was given the mask and before they intubated him. I told them to take good care of him, I gave him a kiss and told him I loved him and I walked back to the waiting room to sit with Jeff. As I removed my blue suit I sensed such a feeling of comfort that I knew my Mom was right there with me and that my family and friends were busy praying.

As I sat in the waiting room I replayed in my mind the twists and turns of my journey with Sam.  During Sam's 12 years I have been required to make so many medical decisions for him and each and every time I wonder if I did the right thing. I thought about how I chose to homeschool instead of send Sam to school because of his weak immune system and his speech issues. I thought about how I chose NACD over traditional therapy methods and suddenly I began to feel at peace...a peace that has been years and years in the making.  None of the things I describe above were quick decisions, each was researched, prayed on, discussed between Jeff and I and all of them came with people who supported our decisions and those who questioned if we were really considering the best option for Sam...but that's just it...I have spent all these years taking my lead from Sam, trusting my gut and trusting the Lord.

I had such a difficult time wrapping my mind around the external fixator process for Sam.  There were so many reasons I could come up with on why we shouldn't do this but only one on why we should...what if??  What if this is his chance to regain his mobility and walk without pain? During the last 4 months I have been tested to the depths of my soul.  I chose to travel across the country and do the surgery and we endured the challenges and struggles that came with that decision.  I then lost the person that supported me in everything, my rock, my sounding board...the person who took care of me when I wasn't taking care of myself. I didn't just lose my Mom, I lost a part of me...an extension of me. I took on Sam's complete medical care and therapy needs. I had originally planned to have nursing care if I or Sam could not do the required pin care. I had therapists lined up for PT and Aqua therapy.  At first Sam fought pin care and I struggled with the process and just seeing the device sticking out of my child's body.  But as Sam adjusted...so did I.  He and I figured out a system of transferring, showering and completing the process. He trusted me and I listened to him...both his verbal and non-verbal expressions. I adjusted and tweaked the areas that caused him anxiety or discomfort.  This is what often happens with Sam. He guides me.

So then I have a decision...do I turn that responsibility and process over to someone else?  Being a Type A personality...the answer is usually "No". It is not because I feel I am the best at everything.  I'm not the best speech therapist, I'm not the best PT, I'm not the best teacher, I'm not a trained medical person, I am not perfect or claim to be...but I do understand and love Sam with all my heart and sometimes that's the real difference.  Sam's education has never been about goals written in an IEP, his speech has never been about programs to re-mediate the effects of apraxia and aphasia, his PT and OT has not been about reaching normal milestones and his behavior is not based on a proven system of modification.

Sam and I are living each day together, learning from each other on what works and what doesn't work for us. We have good days and bad days but each day we learn something that worked or something that didn't work.  We choose to change, to try, to learn from each other because we genuinely love and care about each other.  We respect our differences, we laugh a lot and we are encouraged and motivated not by a paycheck or a set of goals written on an IEP but instead by a smile or an exclamation of  "We did it" or that look of pride that a child or parent gets when they have figured it out, when they have succeeded. I don't know what Sam's future holds but I do have the ability and means to meet a few very important goals for Sam...to be happy...to feel safe...to be loved...to be appreciated...to be listened to...to be valued...to enjoy his family and his life at his pace and in his way.

Just like any parent, but especially a parent of a child with special needs I do some of those things that a parent should never do...second guess, compare, worry, envy, talk more/listen less, be inconsistent, over-protect, make excuses for bad behavior and do things for Sam instead of helping him to do them on his own which in turn disables him further.  Yep, I'm not perfect...but Sam loves me anyway.

As I've traveled this journey and have spoken with many wonderful families I have come to the conclusion that each and every one of us is on a very different journey with very different children.  I share Sam's story as my therapy and to inspire and encourage.  I have always kept it real sharing the good, the bad and the ugly.  I had a request to show more of Sam's hip x-rays so I compiled some of them here.

The first one is when Sam was diagnosed with Legg Calve Perthes in his left hip. The second, third and fourth x-rays show Sam's hip after the double osteotomy surgery.  The last x-ray shows his hip after the external fixator was put on.  In 6 weeks I will share his post-op external fixator removal x-ray.  Since I shared all the ugly photos of Sam with his external fixator on, here are a few of what the thigh and hip look like after the external fixator is removed.

I know these are lovely, both were taken when we removed the surgical bandages for the first time. But honestly Jeff and I both thought they looked better than we expected.

After his 2nd shower they are healing up nicely and we hope to get him into the pool by the end of the week.

Sam is sporting the stylish Scottish Rite Brace at this point 23/7 for about 4 weeks and then he will only need to wear it at night for about 6 months.

My newest challenge is the stretching exercises that Sam is required to do daily to keep his hip from getting stiff.  Challenge #1...getting him on the floor without throwing my back out (I know someone will say do them while he is in bed, funny thing about Sam he will not roll over on any surface besides a floor...fear of falling maybe??). Challenge #2...modifying the exercises until Sam has fully recovered from the surgery and has less pain to do more movement. Challenge #3...getting Sam to cooperate and trying to make it fun (yeah, still working on this part).

Sooooo...here is what Sinai shows hip abduction and hip flexion exercises should look like. I always love when they show a typical fairly flexible person doing the stretches.  I always want to volunteer Sam and see how that photo shoot goes.

But no problem, we'll get there.  Due to Sam only being 3 days after surgery and still in the healing process touching him will cause agitation and resistance so to begin with we'll work on getting Sam used to being on the floor, removing and replacing the brace, rolling on to his stomach and following my lead to the point he is comfortable.

Hip abduction is the hardest thing to work on with Sam without direct contact. He did move his right leg out and wiggled his left leg as far as he was comfortable but I didn't catch that moment with a picture. We will probably use side stepping in the pool to work on this particular area.  Right now with hip flexion he seems to need his right leg bent to assist the flexion movement of his left leg which looks like this.

No he's not stretching up to his chest, but this was all his own movement...not bad for a first try. As he allows me to assist I think that motion will greatly improve since he can bend himself in half while seated to pick up something off the floor. Having him sit on the step in the pool and reaching will also help with this.

The next set of stretches are hip internal and external rotation.

 Sam's worst area has always been internal rotation.  His external rotation was pretty good...keep in mind this was the first time and only 3 days after surgery.

He did get further apart on the internal rotation but it was only for a nanosecond before he readjusted. The final set of stretches is for hip extension, probably the most important area for Sam. Sam loved the extension bar on the external fixator which to me said that stretch really, really feels good and I need it.

I'm guessing for Sam we will spend a lot of time on his stomach working towards a good yoga cobra pose. 

Starting with the picture above, here is Sam currently working on this. Understand...just getting him used to being on his stomach again was a work out.  Sam is kinda like one of those sway back horses, he has a hip tilt and a tummy drop which we hope to reduce in both areas through diet and exercise. I see a lot of swimming in my future and just in case you were wondering wearing my swim suit in public is not one of my favorite activities...but for Sam I will suck it up, put on my big girl panties and deal with it.

As we watch Netflix or play a computer game we will work on getting this stretch to look more like the picture below.

Let's not hold our breath for that...okay?? I will also see if I can put a pillow under his left knee while he is on his stomach to get some additional stretch in the left hip.

At some point I hope to return Sam to PT or strength training.  Dr. Standard made it very clear to me that stretching was much more needed with Sam than strengthening.

And getting back to my finding peace...am I happy with this surgery??  We still have a long way to go to really determine the outcome but I have found peace within Sam's diagnosis of Perthes...and his name is Dr. Shawn Standard.  I was impressed by the number of children he sees with Perthes, I was impressed with the medical advances he uses in his practice, I was impressed with the medical training he has had...but most of all I was impressed with him as a person.  There are some people that you meet that you just sense or know that they are a good person, that they care and want to help. I felt that way when I met Sam's pediatrician, his NACD evaluator, his pulmonologist, his dentist, his favorite Aqua Therapy and OT therapist, his audiologist, his speech therapist, his strength trainer, his NAET doctor and other people that have touched our lives. When I met Dr. Standard he explained to me that Sam's Perthes was in an advanced stage for an older child (the worst possible situation), he listened to my concerns, he took time to get to know Sam and he told me that no matter what...he was in this with me until the very end.  We would figure this out for Sam. We have talked about hip fusions and hip replacements, saving and salvaging the hip. I don't know where this journey is leading us but I am happy we have found someone who is willing to take the lead and be there for the good, the bad and the ugly.

It's time for some more stretching.  Continue to keep Sam in your prayers for healing and pain free mobility.

Faith...Hope...Love

Those three words are what is carrying me through this Christmas season.  I love Christmas and all the wonderful things that go with it...but if I'm honest...this Christmas is different than others.  I know that after Christmas Sam will be having his second hip surgery.  The surgery will be done in Baltimore, too far from home in my mind.  Any surgery for a child is major but when that child also has respiratory and immune system issues...the worry factor is multiplied.  And then there is the whole internal battle that every parent faces when they have to make medical decisions for their child...is this a good idea, should I put him through more, what if this doesn't help, what if he gets sick, what if infection sets in, what if he's worse instead of better, can we really do this????  The "what if's" cause insomnia as my mind swirls and plays with the answers to these questions...as if thinking about them will produce the desired results...and then sometimes my mind gives me the wrong answers and my anxiety and fear increase.

It is only through my faith that I can quiet my mind and give all those worries and anxieties to God.  When I get past all that...I tell myself "I have to have hope"...seems like such a simple concept and yet that too is easier said than done.  Because part of me doesn't want to get my hopes up too high.  I really thought that after the last surgery things would be better but they weren't.  I had hope...and where did that get me???  But then I remember it got me through and I need hope to get me through again.  Believing in Dr. Standard and his ability gives me hope, knowing that Sam could be better and have less pain gives me hope, visualizing Sam walking with a better gait and riding his bike again gives me hope...but ultimately relying on God gives me hope.

I think to really appreciate the depth of my thoughts you would have to be in my head but let me share just a few of these thought processes with you.  Out of pocket cost???  Checked with insurance to see if pre-authorizations are needed and if the hospital and doctor were in network.  Deductibles went up this year so checked the new rates and out of pocket ceiling before insurance takes over.  Title 19 does not transfer to out of state surgeries so that is not an option.  Check with Family Support and Waiver to see if they can provide any financial assistance.  Airline, gas, lodging, food need to be added in.  Talked about therapy requirement with insurance after surgery, thinking 3 to 5 days a week in the pool since land therapy will probably not be effective with Sam due to his lack of cooperation.  Contacted the YMCA aquatic director to inquire if Sam will be able to go into their pool with the external fixator in place...sent video showing child swimming with external fixator.  Contacted 2nd therapist to help cover the needed aquatic therapy keeping in mind what insurance and Title 19 will cover.  Insurance explained they will cover 20 visits and then will need medical necessity to cover any more (oh joy).  The external fixator is on for 4 months at least.

Talked with social worker about changing Sam's respite care to medical care to help with the daily pin care and set up a meeting in January with Bright Star Care to discuss Sam's needs.  I'm really hoping that works out to save my family from what will quickly become a dreaded daily chore.

Made plans to meet with Sam's home program advisor, Ellen Doman to plan out Sam's priorities in the areas of education, processing, speech & language, respiratory rehab, keeping him engaged and not stimming and overall review of where we are at and short and long term goals for continuing progress.  Keeping Sam engaged and not allowing him to withdraw in his own little world is a top priority.  Sam has made so much progress in being social, communicating, and improving his processing that I don't want all of that to backslide too much.  Soooo what keeps Sam engaged...Netflix, Ipad, conversing, games like basketball, nerf guns, balloon badminton, remote control vehicles, air hockey, puzzles, pictures of family or places we've been, puppets (love/hate relationship with those) and the list goes on...  Now taking that list and figuring out what to pack is a whole nother process.  Took laptop to our favorite computer guru, The Help Key to make sure it is working properly and that the camera works for Skyping with Ben and Danielle, Wifi set up for Netflix, the disc drive works for movies and educational discs like the Hear Builder series and added a wireless mouse so Sam can easily use the system.  Purchased a basketball game I hope to be able to install in Sam's room to encourage him to move his upper body which will start working on the respiratory rehab.  Sam got wonderful remote control vehicles for his birthday to drive around the hospital room and crash into doctors and nurses, Hee Hee.  Packing the puzzle board we purchased for his last surgery that allowed him to work on puzzles while in bed.  Pictures of family loaded on the Ipad and bringing puppets even if he just needs to throw them across the room to communicate he's not happy or he's frustrated in a safer way. You can never underestimate the need to do something physical to relieve pain or frustration...I always try to incorporate something into Sam's recovery.  Sam's white board and markers to help facilitate his communication since Sam often struggles with pulling out the right words or responses and often finds it easier to choose them from his board. Add to all of that Sam's respiratory equipment, acapella, spirometer, nebulizer, inhalers and emergency oral steroid and the fun things to encourage breathing like feathers, pom pom's, whistles, candles and party favors.  Sam's pulse ox so I can check his respiratory function as we travel.  The flip video to tape therapy sessions for the therapists back home and pin care for the medical help.

Having Jeff check the van to ready it for yet another road trip and packing extra pillows and blankets for the ride back home to keep Sam warm and comfortable.

I am discussing Sam's dietary requirements with the dietitian at Sinai but will also need to bring along some of Sam's go to diet items for his time at the Hackerman/Patz House.  His millet/zucchini bread, coconut kefir, fermented veggies, goat milk and supplements.  I will also need to pack Sam's arsenal of essential oils which help with his immune system issues.  Working on getting some XXL pants shortened for him to wear after the ex-fix is in place and having a swimsuit altered to accommodate the ex-fix.  Oh yeah...and then I have to pack clothes, wheelchair, walker and anything I might need for this journey....valium, alcohol, a ton of chocolate...just kidding about everything...except the chocolate.  Jeff and I will need to pack our clothes, Jeff's desk from work and snacks/beverages needed for the road trip.

Then my thinking switches to Ben and Danielle and I need to notify the school of our plans, update Ben's Dragon Naturally Speaking on the computer, check in with his go to person so they know Ben will need to come to them in my absence for any additional help.  I will be working with Ben through Skype and email to help him with his school work.  Print out Danielle's practice and sports schedules and driver's ed training so I can arrange transportation for her.  Arrange with grandma's and local family to check in on them and invite them for dinner and serve as back up for any school contact that may be needed in case of illness or when they travel out East to see Sam.  Put money in their lunch accounts and find something special to leave with them from Sam.

Make plane reservations for Jeff and Randy (my brother in law) who will be coming out to assist when Jeff returns to work.  I am so thankful to have family that steps in, supports and helps make all this possible.  I would be lost without them.

To prepare me I am taking more walks, working (which is a wonderful break for me).  I know that sounds crazy but when you are an A type personality, keeping busy is what often times gets you through and helps you to remain grounded and focused.  The paycheck and employee discount is just a fantastic perk in my case.  I am highlighting my favorite verses in the Bible regarding Strength, Faith, Hope and Love and would love to hear any and all favorites from my blog readers.  Sam and I are reviewing the Book of Proverbs which contains an awful lot of wisdom and we have increased our daily prayers.

Throw in hitting a few things on Sam's home program...the priorities...like auditory processing, speech and respiratory exercises with aqua therapy twice a week and you get a glimpse of my life.  Oh yeah...don't forget the regular stuff, laundry, dishes, cleaning, grocery shopping, and making dinners and lunch.

Now add in Christmas and every thing that comes with it and life is...well...a little hectic.  But that's where Sammy steps in and teaches me to take it a day at a time, to count my blessings, to worry less and laugh more, to focus on the important stuff and let the rest pass by.  If I don't get cookies baked, birthday thank you's sent, Christmas cards out on time and all the presents wrapped...I know life will go on and I have long given up on beating myself up on those kind of things.  If you know me, you know I appreciate everything and everyone... my schedule doesn't always allow me to stay in touch or reach out but I try to keep my focus on the things that matter, my faith, my family and my health.

With all that said I still struggle with the natural feelings and emotions that come with all of this.  I have anxious moments, outbursts of emotion at the strangest times, feelings of happiness and sadness, worry and hope, bad thoughts and good thoughts...that's what makes me human.  But in my weaker moments...when the burden is too much for me to carry...I have God.  I ask God to be with me every moment of everyday to guide me and love me and I never forget to thank him for my blessings.

On one particularly hard morning, after Sam woke up and had numerous pain issues I retreated to my room, curled up on my bed and cried.  A commercial came on the TV about Shriner's Hospitals and it showed a little girl in a wheelchair and how after surgery she was able to do gymnastics.  Normally this would make me cry more but instead I felt such a wonderful outpouring of HOPE...as if God were talking directly to me through that TV and telling me to pick myself up and carry on...and I did.

When Sam had his first surgery I purchased a little stone with an angel inside called an angel worry stone.  It came with this poem:

Give Your Worries to the Angels Poem 

Give your worries to the Angels

          It is time to heal your heart.

Every day's a new beginning

          Where love and hope can start.

Give your worries to the Angels

          Release your doubt and fear.

Trust in God to always be there

          With Angels always near.

During Sam's surgery I kept this stone in my hand and rubbed it, prayed with it and it gave me comfort.  I thought I had lost it but when I reached into my winter jacket...there it was.

And that's where the last word of my blog post title comes in...Love.  God hears my prayers, acknowledges my concerns and lifts me up over and over again.  But I am weak because I am human and those doubts and fears can creep back in as they did this past week, so I decided to keep myself busy.  Sam and I ran errands and one of them was to pick out a new couch and tables for the living room with the money I had made from my new job.  I wanted to celebrate by adding something to our home for our family.  I picked out a beautiful new couch and 4 tables, the couch was back ordered but they loaded the tables on to the truck and Sam and I drove home singing Christmas carols.  I put together my new tables which required me to attach the legs and I began to clean out the old tables which have been in our living room for the last 16 years.  I found a lot of memories, baby albums which I had to stop and share with Sam, pictures, school projects and some of the not so pleasant items like long forgotten Halloween candy and garbage that my children were too lazy to throw away and just stuck in the drawers instead.  But then I came across something that literally took my breath away.  I saw a tiny piece of paper with numbers on it that I quickly recognized was from a fortune cookie and when I turned it over...this is what I saw.

I gasped...closed my eyes and thanked God again!!  No one remembers putting this fortune into the drawer or where it came from...but I know and I go into the Christmas season happier, calmer, and thanking God for all the wonderful gifts he has given me...including the birth of his precious son...and loving me unconditionally in heaven and here on earth through a little boy that strengthens my faith, challenges my thinking and opens my heart!  Merry Christmas!!!

Happy 12th Birthday Sammy!!

Today my baby turned 12 years old.  As I looked over his baby pictures, my eyes filled with tears so different than the ones I shed on the day of his birth.  Those first tears were sadness, worry, disbelief and helplessness.  The tears I shed today were tears of joy, of knowing how far we have come, of acknowledging how this little boy changed my life in a positive way, of thanking God for the blessing that is my Sam.  Our journey has been far from easy but along the way I have changed, I have grown and I have become humble.  This little boy that struggles with expressing himself somehow taught me more in his 12 years than I had learned in the 36 years before him.  He opened my heart, reshaped my ideas and beliefs, instilled a strong faith and love of God, slowed me down, educated me on the human body and all of it's systems, he made me feel more, cry/laugh more, hurt/love more, he taught me compassion, he taught me humility, he made me appreciate the little things and never ever take anything for granted.  Sam taught me to always view life as a gift, that each morning I wake up I am to be thankful and count my numerous blessings and never forget to thank God for both the challenges and the blessings. Sam has tested my patience, my ability to stay awake for days at a time, my stamina, my tolerance for difference, my commitment to family, my ideal of what the perfect life would look like.  He has demanded that I think outside the box, persevere, challenge myself and him, love until it hurts and then just a little bit more.  

Sam has shown me that happiness is contagious, that working hard isn't optional, that time not money is the greatest gift you can give someone. With Sam's upcoming surgery I wanted to make sure his birthday and Christmas were special.  I asked him what he wanted to eat at his birthday and he told me "Pizza, bertday cake, ice cream and soda."  I negotiated the soda to green tea or kombucha and we were good to go.  I knew having a lot of people over would not be in Sam's best interest since he struggles with following conversations unless they are one on one and often in a group situation he will wander off to be away from the group and with his pain issues more prevalent his behavior can change in a moment.  I decided a family party with the grandparents would be the best choice.  After cleaning the house, picking up a gluten free pizza and cupcakes, goat milk, coconut ice cream and candles I was ready to enjoy the day with Sam.

Unfortunately Sam's hip had other plans and his pain levels escalated at different intervals throughout the day.  The Ultram which was keeping the pain in check seemed to be failing today.  I prayed that he would be comfortable enough to make it through dinner and opening his gifts.

When Sam was younger he never liked gifts, didn't have any interest in opening them and would rarely open more than one at any event or holiday.  It sometimes took us a couple of weeks to get Sam's Christmas presents opened.  Times have changed and I found Sam often peeking at his presents or shaking them this week...much more typical behavior.  Sam loved his gluten free pizza and due to his hip pain I allowed him to lay on the floor to eat it.  It was evident the changes in Sam's behavior that are caused by pain and pain medication, repetition, lack of focus, persistently calling for me, yelling if we tried to talk as a group, position changes, higher and quicker frustration levels, generally louder and overall more demanding. My heart hurt as I watched Sam struggle to hold it together and enjoy his birthday party.  When it came time to open the gifts he opened them quickly with little regard to the actual gift but instead wanting to get to the next one...maybe just wanting to be done with it.  He wanted things set up and working in such a short time span that all the rushing in the world would not have satisfied him.

By the time we were ready to have cake Sam was ready to call it a day.  Singing Happy Birthday has always been one of Sam's favorite things to do but today as I called him to the table he went into a major melt down.  He cried, yelled, hit the floor and made sure that everyone knew he wasn't happy.  Knowing how I feel and react to pain...I knew immediately that Sam's pain was breaking through again.  He finally made his way to the table, half crawling and half walking and I was so happy to see his face light up as we began to sing.  It always makes my heart smile to see Sam sing "Happy Birthday"...his expression is one of poor joy.  Sam gobbled down his cake and ice cream and then returned to the living room to lay back down on the floor.

As I write this Sam is asleep but he continues to re-position himself and with every movement and groan my heart hurts a little more.  I rubbed in his hip as he slept and then tried a little cranial sacral work to see if I could get the left side to release a little.  He woke up briefly, smiled his wonderful little crooked smile and said "I wuv you Mommy, my heart" and I replied "I love you birthday boy with all my heart, forever and ever" and again Sam said "Amen" as he drifted back to sleep.  I watched him sleep, closed my eyes and thanked God while praying for healing of Sam's hip.  This little boy has the ability to grasp my heart with his smile, my eyes never tire of looking at his intricate features and memorizing how his eyes light up as he talks and how they sparkle in ways different than my other children.  Good night my little warrior and thank you for blessing each and every day of our life together...you are amazing!!

I snapped a few pictures of Sam and Buddy earlier in the day and thought you would enjoy them.

This next picture made me laugh.....ssssoooo....I just had to come up with some captions!

Looking For Some Hope!

As I embarked on this journey with Sam I had no concept of how much his challenges and struggles would change my character, my abilities and my perseverance.  Sam's journey has taught both of us so much and we are about to learn a whole lot more.

Sam and I are headed to Sinai Hospital in Baltimore, Maryland to meet Dr. Shawn Standard, a Perthes specialist we think will want to save his hip and Dr. Michael Mont, a pediatric orthopedic specialist who may want to replace his hip.  You can read more about each of these excellent doctors by clicking on their name.

Sam continues to have hip pain which I have to monitor and gauge by watching his actions and activities.  Sam is not a complainer...as I have always said I think Sam wakes up each day and just comes to terms with the fact "that this is what it feels like to be Sam Mayer today"...and he carries on.  He smiles, he laughs...but he also crawls instead of walks, puts himself into traction, lays in bed or on the floor alot....when he does walk it is on his tippy toes on the left side with a severe limp and he often holds his breath.  Lately I have seen the muscles in Sam's left leg quiver when he stands and on rare occasions he has told me that it hurts.  Please understand that by the time Sam tells me it hurts the pain is over the top...more than you or I could ever imagine.  This is a child who doesn't ask to see a doctor or go to the hospital until his oxygen stats are in the low 60's or he is close to passing out from lack of oxygen. Soooo...as I watch Sam I see an increase in pain, a need for stronger pain medication, I can tell by his frustration level and his inability to concentrate that his pain has increased.

But pain medication is a whole nother battle.  Sam did well after surgery on Roxicet which is like liquid morphine, not something I really want to give my child for very long.  Over the counter medication appears to have little or no effect.  The line of ibuprofen products can not be used because they inhibit bone growth.  The line of acetaminophen products isn't considered a good choice for children with Down syndrome because of the liver enzyme issues they already exhibit.  But we have to use something...so we tried Tylenol with codeine...that was a mistake.  Sam began to violently throw up in the doctor's office until every bit of that medication and everything else in his system had been removed.  After consulting with Sam's pediatrician last week we decided to to try Ultram and Sam's system seems to be tolerating this pain medication.  He did have an increase of the rash that is normally present on his rear end but we are using MRSA oils to help keep that in check.  I would love to say the Ultram is allowing Sam pain free movement but it just appears to make his pain somewhat tolerable.  I am hoping the pain will be tolerable enough to travel on an airplane.

We were thrilled to hear back from Dr. Standard's nurse Ann that she could move our appointment up from January 2013 to November 15, 2012.  I sent along a picture collage of Sam so they could see the little boy that needs their help:

As much as I would like to be blogging I needed to make travel arrangements and continue to work with Sam each day on his home program.  Travelling with a child with special needs who has increased pain levels is nothing I would wish on anyone.  This is going to take some consideration.  Now that we have a pain medication that Sam can tolerate I needed to figure out how to get him to Baltimore.  As I searched for airline flights I quickly became discouraged as I noticed all of them were connecting flights and expensive flights.  Getting Sam on and off 4 different planes on this trip was not something I really wanted to do.  So I continued to search and took a look at my favorite airline site Priceline.  I was baffled that each time I put in my search it took me from Milwaukee to Washington DC.  I checked and made sure I put in Baltimore but it still showed me really reasonable tickets to Washington DC.  And then I realized...I had some divine intervention...God knows our every thought and he just showed me that flying to Washington DC was a direct flight and less than half the price.  I knew I was getting a car too so finding out that driving from Washington DC to Baltimore on a good day would take 75 minutes was nothing...after all I have driven 19+ hours on a road trip in a day.  But thinking again about Sam I knew sitting on a plane for that long would require him to stretch out or lay down so with my travel points I upgraded to a SUV to allow Sam to comfortably travel during our drive to Baltimore. 

Whew, 3 major things off the list...pain medication, airline and a vehicle.  Now we needed someplace to stay.  I was thrilled that when I received my packet from Sinai Hospital that they included information about the Hackerman-Patz House.  This is located right on the grounds of Sinai Hospital and is like a home away from home.  I was again thankful that when I called they could accommodate our  2 night stay. Another item off the list.  God is good!!

I now have to think about how to administer Sam's medications for thyroid and pain while we travel, pack up his nutritional supplements and probably some of his go to diet needs like his special gluten free bread, ghee butter and PH diet approved snacks.  I will also have to make sure the Ipad is charged and ready, loaded with something new to divert Sam's attention from any anxiety caused by his pain.

I'm not sure what we will hear from the doctors...I don't know what decisions will need to be made.  I can't go there just yet.  Sam has taught me to take life "one day at a time", so with the travel arrangements made we focus back on our day to day program and appreciating each and every day that we are given together. I'm really just looking for some hope...someone to help Sam move without pain.  I'm not sure if he will walk or run like he did prior to Perthes but I pray that he will be able to have more movement and less pain.

I ask for your prayers and good thoughts as we embark on another part of our journey.  I hope and pray that Sam can tolerate the travel, that the security check is quick and respectful and an extra dose of patience and perseverance to get Sam on and off the plane.  I will talk Sam through each and every step letting him know that we are in this together and hopefully at the end of this journey he will turn to me as he so often does and says "Mom, WE did it!!"

Enjoying The Best And Praying About The Rest

My California trip seems so long ago and I really need to finish posting about it because I have great pictures and awesome videos to share...but life has a way of changing our direction, our perspective and our reality.

As I explained in my last post Sam's mobility or lack of mobility became my priority.  Last week Tuesday Sam had his sedated arthiogram CT scan.  If you remember from my last post Sam more or less told me that we needed to do this.

Going into the appointment that day I felt so strong about the possibility that this would give us all the answers and some how, some way we were going to be able to finally help Sam move without pain.  I told Jeff, "Wouldn't it be great if they found something that could easily be fixed and Sam was walking like he did before this surgery, before Perthes".  God spoke to me through different means and I went to Children's confident that this was going to be the answer to our prayers.

Sam woke up and he went into Children's happily until of course they wanted to do a pulse ox which always freaks him out and then the happiness really took a turn when they decided to put the plastic bracelets on.  I convinced him the nurse could put them around his ankle over his sock and we would cover them up so he didn't even have to see them.  It was a good idea in theory...unless you have Sam's sensory issues which tend to escalate your OCD issues of really wanting those bracelets off.  It took about 15 or 20 minutes of threatening to turn off his movies on his Ipad to get him past this experience but he finally stopped trying to take them off and would just blow on them.  I gave Sam his dose of Versed which for the second time in Sam's life had the desired effect of making him drowsy.  During previous sedations it actually made him hyper.  Sam drifted off to sleep but woke up each time they tried to put that blasted gown on.  He wanted nothing to do with that and he was going into this procedure with just his underwear and socks on...he's really quite comfortable with his body image but not so comfortable with those scratchy hospital gowns.  I was calm and confident when he was wheeled away.  I felt like we were going to get answers...that this needed to be done...and that we were helping Sam.

The sedation, injection and CT scan took about an hour and a half to complete and they called me into recovery as Sam was just starting to come out of anesthesia.  Thankfully he came out gentle and calm and I again felt reassured that we were doing the right thing...yep this is what we were supposed to do.  Sam dozed for a while but when he did come to he didn't want to hang around and wait for the nurses to complete the paperwork...he wanted out of there...and he wanted out NOW.  He asked to get dressed, then he wanted his shoes on and PLEASE, PLEASE finally cut off those blasted bracelets.  He thanked the nurse for her skill with the scissors and her removal of those plastic torture devices and then he wanted to get into his wheelchair.  He was ready to jump out of the bed before she even lowered it and as soon as he was in his wheelchair he was pushing himself out the door.  I wheeled him around while Jeff signed his life away and in record time we were headed out of there.  Note to self:  a persistent child can move medical personnel much, much faster than an angry parent.

The next day I waited for the call to come in from the orthopedic surgeon.  After a few rounds of phone tag we finally hooked up and I listened with anticipation.  But I quickly lost my enthusiasm when I heard "We didn't really find anything definitive...there is nothing to easily fix the pain or issues...we are not really sure what is causing Sam pain or causing him to walk less or stop walking."  And then as if this story is on rewind I heard again, "Sam came to us with severe hip dysplasia and 100+% collapse of his femural head...an advanced stage of Perthes.  The surgery was successful in containing the hip in the socket but the overall structure and damage to Sam's hip is extreme."  My only ray of hope:  "There is a ridge of bone outside the socket which might be causing Sam movement issues but it would normally not present acutely, so we are not sure if that is an issue or not."

It is times like this that I feel like all the air is just being sucked right out of me...I'm left frustrated, kinda angry, tired and hurting.  My brain and heart hurt the most as I think about this wonderful little boy that I just want with every fiber of my being...to walk and move without pain.  My brain takes me back to the road trip to Maine and Vermont when Sam was hiking, walking and running along the beach with a smile from ear to ear and it has the affect of adding salt to the wound.

But then I look at Sam...happily folding laundry while laying on his stomach on the living room floor.  I watch him smile and laugh as I throw another load of clean clothes on top of him.  I watch him sit up and begin handing me clothes as he tells me the color, owner and item description of each one...and I smile.  But that smile turns to concern when I see him quickly lay back down on his tummy and sigh heavily when the pain of sitting becomes too much.  I sigh...deeply.

Yeah..he adjusts...but is that all we can hope for???  Is the idea of him walking and moving without pain an unattainable dream???  His orthopedic surgeon asked me to meet with another orthopedic surgeon to discuss what removing the ridge of bone would entail.  I appreciate that we can get in so quickly and I also worry that what he saw on the CT scan has him jumping through hoops too.

On Friday we met with the other surgeon and I got my first look at Sam's CT scan.  Seeing your child's bones in a 3 dimensional form is indeed really cool (it is amazing that they can turn it in any direction and show all the detail) but at the same time seeing in 3D how distorted and abnormal your child's hip is...is a little disturbing...really takes a lot of the coolness out of the whole procedure.  Sam's hip structure is abnormal in many ways, as I looked at the 3D model they showed me of a normal hip...I had a hard time trying to figure out what was what on Sam's hip.  Where the beautiful round ball should be was a twisted mass that kinda looked like you took a marshmallow and jammed it into too small of a hole and all the stuffing squirted out the sides (yep...that's my technical analysis).  I couldn't help but think of the word "impingement" when I saw all the excess bone outside the socket.  The findings on the report state:  The left femoral head epiphysis is nearly completely flattened and densely calcified in a linear fashion. The flattened femoral head/metaphysis articulates with the pelvic bones at a shallow "high riding" lateral dysplastic acetabulum.  Intra-articular contrast shows the extent of the capsule about the femoral head. No obvious loose bodies are appreciable.  Hardware at the left proximal femur and supra-acetabular left iliac bone is noted.  The left proximal femur shows vargus alignment.  Yeah...that's clear as mud...my definition is sounding much better now isn't it???  Sam has loose joints and low tone, some lovely attributes that come with a diagnosis of Down syndrome so I can't help but picture Sam trying to weight bear with no ball in the socket so this ridge of bone just smashes along the side of his hip socket causing all kinds of pain and pinching of who knows what.

I wanted this surgeon to tell me he could fix it...he could fix Sam.  But I didn't get that...instead he was kinda wishy washy with a lot of  "might be helpful", "not sure", "the bone could grow back and the surgery would have to be repeated", "this may not be the cause of his pain" and yadda, yadda, yadda.  When he left his nurse explained that this was major surgery, similar to his first surgery and he would probably be back in his body brace while he healed and then we would have to begin rehab all over again.  When I asked the doctor about removing the hardware he explained that they would not want to do both things at the same time because then they could not determine if the surgery was successful or if Sam was having complications from the hardware removal.  He also mentioned that due to Sam's slow bone healing that if the hardware was removed Sam would have approximately 6 holes in his femur and could possibly snap his femur before those closed up sufficiently or his bone may remain weak and if the hardware remains in it will continue to impede his growth.  Wow...this just gets better and better.

But I want to stop for a minute...and tell you about something else that happened before we went to see this surgeon. We were early because I wasn't sure how much rush hour traffic we would encounter so I gave us extra time to get there.  As we arrived I decided to stop at the deli after the skywalk to grab a bottle of water.  I noticed a young man in his 30's looking at Sam and I didn't think much about it because Sam often gets noticed when we are out and about.  I purchased my bottle of water and then stopped to open it and check my timing.  The young man walked up and said "Hi, do you have a moment?".  I said "Yes" and he continued "Who is this little man?" I told him "This is my son Sam" He said "Hi" to Sam and asked "Where are you headed today".  I told him "We are going to ortho to review a CT scan and talk to a surgeon." At this point the man began to tear up, as he was reaching into his pocket he told me "My best friend died today." I told him "I'm so sorry for your loss".  He handed me a $100.00 bill and said "I want you to take this and make his day special." At this point the man was visibly shaken and as I tried to hand the money back to him he said "Please, take it and do that for me." and he began to walk away. I called to him "God bless you" and he said "God bless you and your family too" and he hurried away as he began to sob. I began walking toward ortho stunned and not really sure of what just happened.  I turned around and the man was gone and I continued walking with the $100.00 bill in my hand.  I stopped and said a prayer for the man and I wiped away my tears.  I replayed what had happened in my head and I began to wonder "What does it mean God, what are you trying to tell me or show me??"  This is the second time this has happened to Sam and I, the first time was on our trip to California and a complete stranger gave me $20.00 because Sam touched his heart.  So what do you think this means???

My daughter and I thought possibly and kinda frighteningly that the man was telling us that we needed to make every day special because we weren't going to have that many more on earth.  My Mom called me today and read me a story from the Milwaukee Journal about a young boy named Bo from Door County that died of Leukemia on Friday.  Here is the story.  I don't know if the young man who gave me the money was referring to this young man but there was a tie to Children's Hospital and other things from this boy's story made me wonder if this could be related.  In the story they talk about Bo's philosophy: "Your actions set the pace and influence the future," Rolf Johnson said. "Bo's big deal was that you had to reach out to people, because people had done that to Bo."  A friend of mine and her mom thought that maybe God is trying to get me to receive from others because I am a blessing to many but I often struggle when people willingly offer to help me.  Another friend felt that I had dropped off in my writing on the blog and God wants me to share my journey and story with Sam to continue to bless and inspire others.  I'm still not sure and continue to pray for wisdom to figure all of this out.  So my readers...what do you think my message is???

After much thought and prayer over this weekend I have called a meeting with Sam's pediatrician to discuss the surgery option from Children's, to discuss pain management for Sam and to brainstorm on what our next steps should be.  Is now the time to head to Sinai Hospital in Baltimore and meet with Dr. Standard and Dr. Mont to hear their thoughts and suggestions on how to help Sam?? Surgery for Sam comes with it's own risks and issues, recovery, rehab and caring for Sam's medical needs has been my focus for the last two years.  I continue to pray for guidance on all of these subjects.

But no matter what, Sam and I are in this together.  I will continue to remember the young man's advice to make Sam's days special and Bo's advice that my actions influence Sam's future.  We may have even more challenges than we had but we are going to continue to make each day the best that we can.  Today when my brain couldn't shut off from thinking "what's next", I decided to take Sam and Buddy for a walk.

I love this picture of the two of them!

 I always like to give Sam a chance to take pictures too, so here is one of his.

 I don't know who's smile is more cheesy...Sam's or Buddy's.

Another cheesy smile!!!

I think in this one they are saying, enough with the camera, let's go home!!

 Here is another one of Sam's perfect pictures!!!

 A wonderful walk on a wonderful day...with a boy...

and his dog!!!

Tomorrow make your child's day special.  It doesn't have to be in a big way, a walk, an extra book read while snuggled up together, a special meal, taking time to play, extra hugs or just reminding them how much you love them.  Do that...for Sam...and Bo...and the wonderful young man who reached out to a complete stranger to honor the memory of his best friend.  Have a great night and I leave you with a poem written by the mom of a dear friend of mine.

Morning Sonshine

 

As I soak up the Son,

he changes my heart.

Just sit and relax,

he is doing his part.

Mine is to trust

and obey what I hear.

He will take worries

and remove every fear.

Soak in the Son-

each morning a new-

he'll bring the changes

and make me brand new!

By Diane Whiteside