Levi was born on February 23rd  at 38 weeks gestation.  He was a perfect 8 lbs. 1 oz. and 21 inches long. Everything about his birth was “normal” however one nurse noted how flexed his feet were.  She said usually you only see that in breach babies, but no worries he will relax.  He was such a wonderful happy baby with a just a few exceptions.  Levi hated being placed on his stomach or “tummy time” as we called it.  He would just scream as if he was in pain.I constantly asked his pediatrician about this at appointments, but was always told “all babies hate being on their stomachs…just keep doing it.”  Consequently Levi was almost sitting up before he ever mastered rolling over (at over 5 mos) because I just couldn’t stand doing that to him very often. Levi also had trouble  nursing on one side with his head positioned in the cradle hold.  He would try and then pull away and scream but would still be hungry and
want to eat. This only happened when held that particular way, never on the other side. When I asked about this the lactation consultant seemed somewhat stumped and simply said then hold him the way he will eat & call back if things don’t get better.  The problem eventually resolved I thought until months later I realized he wasn’t eating on that side at all because the milk was drying up there & he wasn’t gaining weight.  We switched to bottles and formula and moved on.

 

A little before 6 months a popping sound began in Levi’s left shoulder. It was not like popping knuckles, it was periods of intense specifically located popping that happened every time he was picked up for several days at a time & then disappear.  Other family members (one with a nursing
background) noticed the popping also & urged me to ask about it. Whenever I brought this up at Levi’s well baby check ups I was told some kids just pop.  At his 6 month check up his pediatrician did notice what she believed could be abnormal skin folds & ordered a pelvic X ray to further examine his hips.  The X rays came back clear & we were told all was fine with our baby boy.

Developmentally Levi was on track & even ahead in many areas.  He sat up around 6 months & walked just after his first birthday.  Although he has never been very interested in climbing up on things.  There were several times during his early walking days that I would watch him & wonder if his left shoulder was dropped just a bit but couldn’t ever decide if it was an illusion brought about by a wobbly toddler.  I figured he moved around in his diaper for the pediatrician surely if there was something there she would pick up on it I was being overly worried. I felt brushed off on many of my questions, but figured I was just a 1st time mother, what did I know?  I hadn’t gone to medical school like our pediatrician.

Around 14 months Levi had a fall down the stairs.  It was far more traumatic for me then for him I believe, but looking back now I’m thankful for it because of that fall I had been watching Levi very carefully. While giving him a bath one night I noticed a bulge under his right shoulder blade.   Fear washed over me & I just remember screaming for my husband & saying “is that his spine?”  No surely not we decided it had to be an enlarged muscle. After all Levi had already had an X ray & if something as serious as his spine was the issue  surely his pediatrician would have noticed by now!  I massaged it every night & by his 15 month check up it was still there.  It was the last on my list of questions for the pediatrician & Levi had to have been running around the office for at least 20 minutes in only his diaper before we got to it.   That day is burned into my mind, his pediatrician reaching out & poking at the bulge, her face turned white as she finally “saw Levi” not just another patient. She said he’s going to need some X rays & maybe an ultra sound.  The pediatrician called with the X ray results showing a 25 degree spinal curve (lying down).  I asked the most important question I could think of “What does this mean for Levi’s future?”  She said she had never seen it in a child this young & hoped it had been found in time before it became “disfiguring or disabling.”  I broke out into tears.  She offered as comfort that if the X rays hadn’t shown anything the next step would have been to ultra sound the area for a tumor….at least it wasn’t a tumor she said.  I broke. We switched doctors & have never heard from her again.

We were referred to a top notch pediatric orthopedic doctor at the local children’s hospital.  He ordered another set of X rays & evaluated Levi at a 20 degree curve with a 17 RVAD  (standing) & said that he had an 80%chance of being in the resolving group.  We left feeling very positive. We “watched & waited” for about 2 ½ months. During this time we again noticed the popping in Levi’s left shoulder.  At his follow up visit the X rays revealed that Levi’s curve had progressed to somewhere between  29 – 35 degrees with a 25 RVAD.  Levi was given a progressive diagnosis & an MRI was ordered.  The MRI came back clear & our doctor immediately moved on to discussing treatment options with us.  Bracing was thrown out immediately as the doctor didn’t believe it to be very effective  in actually correcting a curve & recommended casting  for this age if we were pursuing treatment at this point.  This doctor was so open & honest with us about his recourses & experience in treating infantile scoliosis.  He was willing to cast Levi in a matter of weeks, but the decision was ultimately ours.  I hold this man in such high regard for answering honestly the most important question I could now think of… “What would you do if this was your son?”  He didn’t speak for awhile and finally said, “ If it were my son I would take him to Dr. D’Astous at Shriner’s SLC. Casting is what he does.”   I now knew this is where we needed to go as my research online had lead me to ISOP & Heather who had given us the same information.

A little over a month later Levi was casted at 20 months of age.  He is now doing fabulous!  X rays pre cast at SLC showed Levi’s curve to be “C” shaped at 31 degrees with 15/20 degrees of rotation & 10 RVAD.  The post cast X rays showed Levi being held at 16/17 degrees with no rotation!  His 2nd cast  had him holding steady at around the same numbers which was the expectation before he was ever casted.  Levi is currently in his 3rd cast & down to about 15 degrees with no rotation in cast.  Currently we are expecting to do one more cast & then try out bracing. We have noticed periods of more popping while in his casts, but the doctors are not concerned about it nor are they sure it is related to his scoliosis…. My “mommy gut” tells me it happens with growth spurts.  His appetite doubled post cast & he actually gained 4 lbs and 1 inch in the nine weeks he wore that first cast.  Levi enjoys running & playing as much as ever. He loves match box cars, going to basketball games, & macaroni and cheese.  Thanks to the amazing team at Shriner’s SLC we are now very optimistic about Levi’s future & look forward to one day putting this behind us.

Side by side compare cast #2

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