Wednesday, May 22, 2013

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.













8 comments:

  1. Thanks for the update:) hope Sams hip continues to heal well.

    I'd love to hear more about your experiences with NAET when you have a chance.

    Laura
    downsyndromeupupupandaway.blogspot.com

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    1. Working on that post right now Laura!

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  2. Sue you are an inspiration. I will be praying for you and sam.

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    1. Thanks Heidi, we still have a long way to go but I am happy we are at this point in the process.

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  3. We have never met, but I love you and I love Sam! Even though our challenges are different, I learn so much from you...I do wish I could be as wise and faithful as you.
    My little boy is only 4.5, we have a long way to go, I find this journey very lonely.
    I am glad Sam is healing well and that you are finding peace. Prayers for your family!
    Geovana

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    1. Geovana, I LOVE your name and thank you for the prayers and positive thoughts. Reflect on the meaning of your name "God is gracious"...someone knew of the journey you were going to undertake and your name is a reminder to turn the worries, concerns and loneliness over to God, you don't need to carry that burden. May God bless you and your family!!

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  4. I just recently joined to your blog. You have given me the inspiration and the encouragement I was desperately needing. You are a strong woman and Sam is a brave boy. We will start a neurodevelopmental approach in the coming weeks, so ready for this program for helping my year old boy who has T21, SP and ASD after seen through your blogs how this type of program can change out kids' lives. I will like to hear more about the NAET doctor. I am sending prayers in your way and a lot of tight hugs.

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  5. Hi Sue, I am praying once again that all of the surgeries and care will work. May Sam walk well, and run, again, without pain. Jeanne

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