Our focus today

If you asked me a week ago, I would have told you our latest challenge has been urinary track infections.  A major issue for us of late, Ari has been on a daily antibiotic for 2 months straight.  We scheduled a procedure called urodynamics for January 19th to explore his bladder and kidney functions internally.

I remember Ari receiving a battery of renal tests when he was in the NICU.  The "R" in VATER stands for renal (the kidney or urinary system).  We checked the "R" off the list, thankful to be spared one of the letters in the acronym.

Over the course of the past few years, Ari had a few bladder/urinary track infections.  He's rarely symptomatic and never complains of any discomfort associated with them.  For any of you who have ever experienced a UTI, you know that they can be extremely painful.  I often wonder if he lives with a certain level of pain in this area every day as his "normal".

Within the past year, his frequency of infections increased dramatically and his lack of bladder control became evident as we attempted potty training.  Ari is unable to control his flow of urine, a common result of a tethered spinal cord and sacral deformity.  We started seeing a pediatric urologist and discovered that his bladder is retaining urine.  This is a concern for multiple reasons.

1.  He can not fully empty his bladder, causing the urine to sit and grow bacteria which leads to infection.
2.  The bladder has to expand to accommodate the excess urine, which can be painful.
3.  The urine can back up into his kidneys, causing kidney damage, stones or failure.
4.  The urine can overflow into the testes causing epididymitis and possibly infertility.

So far, all of the above mentioned effects have happened except for #3, which we are watching closely.

With this being our focus, I couldn't help but wonder if something could be wrong where his spinal cord was tethered at birth and released by a neurosurgeon while still in the NICU, so I scheduled an appointment.

Unfortunately, my suspicions were confirmed.   Ari's right foot is about an inch smaller than his left.  Combine that with some right leg and lower back pain, right leg dragging when tired, and the increase in UTIs, and the symptoms point to a re-tethering.

Here's the problem... a tethered spinal cord is a degenerative defect, often referred to as a syndrome of its own.  As he grows, the cord can re-tether at multiple times in his life.  MRI technology cannot detect the tethering, so his symptoms dictate the next surgical step, which is extremely risky in the big picture of his surgical spectrum.  If we wait, it can lead to progressive, irreversible spinal cord damage, such as loss of movement or feeling in his legs.

Since he'll be intubated on the 19th for the urodynamics, neurosurgery ordered a spinal MRI to rule out a spinal fluid leak or mass.  We'll determine his next steps after we receive the results from these tests.

Though hard to imagine, our biggest issue today is not his bladder or his spinal cord.  It's something I never thought I'd have to deal with... Ari developed a tic.  It's a hard blink that last longer than a normal blink and is uncomfortable to watch. I brought him into the pediatrician's office yesterday and they drew a full series of labs.  Ari's fight or flight instinct is ridiculously strong.  I had to lay on top of him to hold him down while they drew vial after vial of blood, he stared at the needle, screaming.  "I no yike that shot, Mom." he said to me as we left.

I don't like it either.. but for a different reason.  The fear of the unknown. It could be a strep infection in the blood, but that's just 1 vial... what were the other 4 for?  I didn't ask, knowing his doctor is using the "rule out" method we've become used to with Ari's many diagnoses.

It turns out it is not an infection, so we are left with 3 other options.  It could be a nervous tic that goes away as quickly as it came, it could be a mass in his spinal cord compressing the optical nerve, or it could be his spinal cord re-tethering and pulling on an optical nerve.

For now... we live with the unknown, give Ari lots of love, and have faith in his strength.  It's also important that our daughter Liv does not feel slighted while we deal with this new chapter, as she's had her own series of challenges lately.

At 7 years old, Liv is a strong athlete and competitive cheerleader.  She sprained her left ankle a few times over the course of the season and was already wearing a support brace.  During a practice prior to the holiday break, Liv tumbled INTO a trampoline, chipping 2 bones in her left knee.  The ensuing hip to ankle immobilizer caused her to walk on her ankle at an awkward angle, which led to a ligament tear in her already weak left ankle, taking part of the growth plate in her heel with it for good measure.  Her physical therapy appointments are keeping us... and my parents... very busy.

I've told many of you that Larry and I survive the highs and lows by knowing when to look at the big picture and when to look only as far as we can see.  Right now I see the weekend, some family and friend time, and a nice glass of wine.   Next week will bring its own challenges, joys and hopefully a few answers.  Until then, enjoy this video I took today of Ari dancing.  Cheers to the weekend!
Ari dancing to Hi-5