Friday, June 5, 2015

tough days but lasting joy

Doing life with a special needs kiddo is not for the lazy or weak of heart.  Especially during those weeks that seem to be cluttered with appointments.  There's always a therapy appointment to head to, a doctor or two to call, an appointment to schedule, medications to give, a prescription to refill and pick up, all the while juggling the rest of the family's schedule, housework, and I haven't mentioned my work responsibilities.  Add keeping an eye on 92 year old grandma who has been extra needy lately to the mix and some days my head feels like it's just spinning!  I could mention that in the past few weeks we've had to evacuate our living space and the 6 of us are living mostly out of 1 bedroom but that's a story for another day and quite honestly thinking about all of this is making me a little sick to my stomach.  We've been busy and faced a lot of adversity in the past month.  Phew. I need a nap!

Back to life with Zachary.  This week started with lab work, an ultrasound and a kidney appointment. So far his kidney function remains good and with just a little tweak to some of his meds we are good to wait 3 months for his next appointment.  He continues to be stuck around 23 pounds, but hey, we were at 22 pound all of 2014 so 23 pounds is some weight gain, right?!  We REALLY need this teeny tiny skin-and-bones boy to grow!

The appointments aren't stopping.  His kidney doc is referring him to a hematologist due to his continued low red blood cell count, and we made a special dentist appointment to get his teeth worked on while he's under laughing gas or something to hopefully make it possible for him to cooperate.  The last dentist appointment was a major fail and may have ended with mommy tears.  Last month we added a rehabilitation doctor to the list and learned after xrays that he has scoliosis and minor hip displacement - as in his hip is not completely in the socked. Like I said - this life isn't for the weak of heart.  There's always something new to face!

We celebrated Z's 4th birthday last month!  Incredibly hard to believe.  While being massively behind developmentally he's making some great strides on his own time table.  He's race car fast using his walker to help him get around, he can climb on top of almost anything now including the kitchen table and straight into his high chair when he's hungry!  Zachary has grown to love his weekly Hipo Therapy - therapy on a horse!  His favorite past time is splashing all of the water out of the toilet and either slamming doors loudly or shutting the squeaky doors ever so slowly so that the creaking sound lasts for about a full 30 seconds at a time.  Cue the earplugs!  A lot of his whining and screaming has stopped as he is learning to communicate with sign more and more.  Hallelujah!  He can now tell me when he's hungry and what he'd like to eat (he only has 3 favorite items maybe that's why it's easy to figure him out now).  You know how you know it's time to run to the store when the toilet paper is out?  It's that urgent when the cottage cheese containers are gone. We buy 2 at a time - the large ones from Costco and we still run out!  A blessing of our special Z turning 4?  FREE diapers!  Yep.  Delivered to our door in massive boxes to last a month.  Hooray!!!

I'm tired.  We've been hit with so much tough stuff lately.  But there's so much joy in the midst and I'm looking forward to seeing the little blessings the summer months will bring.


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