Saturday, August 25, 2012

Every Week Breeds Success

Josiah is blowing me away with all that he is accomplishing!

On Thursday, D (physical therapist) came to work with J.  As usual, she was met with smiles and babble.  He engaged quickly and easily.  For the next 75 minutes, he simply astounded us.  Side-sitting, which always brings out tears, resentment, and frustration, was embraced!  Josiah tolerated side-sitting (both sides) without complaint, reservation, or crankiness lol.  One mirror, appropriately placed, provided the very entertainment he needed.  "Where's the cute boy?"  "Where's the handsome boy?"  "Hi, Me!!!" is all Josiah needed to hear.  He not only looked at himself in the mirror, but he kept reaching out to the cutie in the mirror.  At times, D & I merely motioned to one another - we dared not jinx the moment.

Belly time is gradually becoming more difficult.  Josiah has mastered rolling over, so keeping him on his belly is a difficult task.  Now, while on his belly, D is working on keeping his knees pulled up under his belly and rocking him onto his heels.  Josiah has been practicing pulling his knees up under him.  However, he doesn't like to be placed there and rocked.  He complains!  I know he'll get used to it soon - as he has all other 'new' movements.  Then he'll master it :)  It's one step closer to crawling.

Despite his left arm being slightly weaker than the right, Josiah is reaching more with his left arm now.  D and C (occupational therapist) have noticed the improvement.

What, I think, excited me the most on Thursday is this: D sat Josiah on his bum, in between her legs, facing away from her.  With very little support, Josiah was able to sit for an extended time.  Mama was thrilled, to say the least!!!  Is sitting in this child's NEAR future?  He is an amazing little man! 

Whilst sitting, and during belly time, Josiah is 'weight bearing' with his arms VERY well now.  This, too, is a marked improvement.  He is definitely getting stronger.  He is working hard and it is paying off. 

One of my fears early on was food (aside from the breastfeeding struggle).  Due to Josiah's high palette, I was worried about the food issue.  It is very common for children with Down Syndrome to have issues around eating.  One big issue tends to be food getting stuck in the high palette.  Another HUGE issue is the tendency for the tongue to protrude out of their mouth.  Well, Josiah's tongue doesn't protrude - we are so fortunate for that.  And, despite the high palette, Josiah has transitioned to eating (baby food) like a trooper.  He likes almost everything (not tolerating different foods is another common problem).  He keeps his mouth fully closed while eating (again, the tongue poses no problem).  Finally, he's eating fruits, veggies, and meats.  I couldn't be more delighted.

Every week proves that Josiah is not a child to be underestimated.  Every week breeds improvement and success!

I wish everyone could understand the joys of raising a child like Josiah.  Every accomplishment is met with amazement.  Every smile is pure.  Every laugh, sincere.  Every moment, a joy.  Every snuggle, real.  Imagine how wonderful the world would be if only more people could share in that miracle....

Monday, August 20, 2012

Bated Breath's Burst Bubble

As you may remember, I was a bit excited 2 weeks ago.  Josiah had last weighed in at 13lbs 2oz.  That was June 8th.  Fast forward to the end of July.  I brilliantly 'guestimated' (at home) a weight of 16lbs 10oz.  That result injected a, perhaps overinflated, sense of excitement (and desire to 'knock their socks off').  I was rearing to get Josiah back to the MD for an official weight check.  Of course, I did what I threatened to do.  I called the pediatrician's office and had him back in there on two days later.

August 1st.  I had to settle for a different MD - Josiah's was on vacation (he had some nerve when I was ready to gloat :).  Josiah was weighed.  15lbs 11oz.  Crap!!!!  A momentary disappointment, followed by "Hey!  He gained over 2 lbs in less than 8 weeks."  If I hadn't thought he weighed almost 17, I'd have been dancing down the hallway at the pediatrician's office.  Unfortunately, I did think he weighed more.  Oh well!  I made one more appointment for mid-August in preparation for the audiology clinic appointment.

Mid-August....back to the pediatrician.  9 month visit (one month late), weight check, and ear check.  Weigh-in - 15lbs 3oz - OUCH!  It was an 8oz weight loss in 10 days.  Damn!  It's the never ending roller coaster.  Well, it wasn't that bad.  Josiah's regular pediatrician was back.  Despite the 8oz weight loss, the MD was thrilled with the 2 lb weight gain over 2 months.  Things are moving up, slowly but surely.  (Kel, needless-to-say, I never got the satisfaction of the FU smile lol).

No shots for the 9-month check - thank goodness!  Even better, Josiah had no fluid in his ears.  That should bode well for audiology!  Right???

So that's that.  The weight is improving but not as quickly as "they" would like, sometimes.  We're just muddling through day by day.  We smile at every little accomplishment.  We dream of the next one.  We continue to watch with amazement, the blessings we have been gifted.

Next stop, Boston....the audiology appointment.  I love walking into that clinic.  You enter into a professional building on a busy city street.  You pass the security desk, press the elevator button, and ultimately reach the destination.  As the elevator doors open, the first visible 'landmark' is the Big Bird on the wall.  He silently stands there to greet you, as if to say "Welcome." 

We were there early....40 minutes early.  Josiah was called fairly quickly - impressive in itself.  They checked his ears for fluid and found none (YAY!!!!).  He didn't like the ear probes.  Therefore, the test result was not perfect.  Ok, step 2.  I carried Josiah into the testing room.  He sat on my lap.  An MD sat in front of us facing Josiah.  She acted goofy in an effort to maintain his attention.  Now the 'test' began.  Noises (varying from tones to music to voices) would sound (in varying volume levels).  They wanted Josiah to turn his head left or right - to correspond with the direction of the 'noise.'  Well, he did - sometimes.  His facial expression changed EVERY time indicating he could hear.  However, he picked and chose when he wanted to turn his head. 

They say the test was inconclusive.  They say "developmentally" he's still a bit young for this test.  Really????  I say....he thought their test was stupid :)

We'll go back, again, in a couple of months.  Until then, Josiah continues to inspire me everyday <3.  I love you, little man!

"Don't ever underestimate me!  I would never do that to you." 

Accidental Censorship: Who's Blog is This???

I have been remiss in writing here.  I wasn't sure why.  It has been driving me crazy.  I have plenty to say.  I love to write.  Yet, I haven't been engaged.  I certainly have no less enjoyment in my topic.  So, I started to think about it.  Then, I looked into it.  From the start, I averaged 3-4 posts per week.  That's approximately 12-16 posts per month.  For the past 2 months, I have averaged a total of 7 per month - that's less than 2 per week.  It all changed in May and left me asking myself, "Who's blog is this?."

Someone, whom I adore, became concerned that readers might become bored with the blog.  See, at the beginning, the majority of my writing was topic-specific.  We had a baby with Down Syndrome.  We quickly involved early intervention.  Then, the truth about his heart became evident.  Our 3 month old survived an incredible open-heart surgery.  There was much to write; It was mostly about what consumed our thoughts - our baby boy.  Thankfully, he came through with flying colors.  He healed quickly.  His stamina, strength, and weight all started to follow suit.  By May, more of my writing included subjects other than Josiah (and his Down Syndrome).  Then, I was hit with the suggestion that I was boring my readers.  So, with reservation, I introduced the concept of Stone Soup....a catchy title for posts which were 'off topic.'  I tried to accommodate.  However, I've reached an impasse.

I am the mother of a child with Down Syndrome, true!  I am also the mother of two children without an extra chromosome.  I am also a wife (who is missing her husband tonight).  I am a daughter, niece, sister, sister-in-law, friend, and the list goes on.  Everyday, I juggle these roles as best I can (as many do).  My life is made up of multiple roles, tasks, chores, worries, obstacles, joys, blessings, achievements, etc.  One child does not define me or my life.  My children are my life but they do not define my life.  I cannot be one role without also being the others.  Why?....because that's who I am.  That truth exists when I wake up.  It exists when I write.  It exists when I go to bed. 

I am also a writer.  I began to write when I was in the second grade.  I write when I'm moved to write.  I write when I'm inspired.  I write when there's something to say.  Writing is personal for me.  It is one way of sharing my heart with those that I couldn't otherwise.  Of course, if people enjoy my writing - it's a plus.  However, it's not WHY I write.  I don't write for the enjoyment of others, though I love when that happens :).  I write because I'm a writer.  It's as simple as that.  I cannot conform to another's idea of what writing should be, what a topic should be, or what a blog should be.

And so, with excitement, Up The Down Staircase continues - as it was meant to be.  I will continue to write about Josiah...his ups, his downs, his growth (both typical and atypical of a child with Down Syndrome), etc.  I will also write about the things that make me, me.  With you (my reader) I will share, from the heart, my thoughts, feelings, fears, inadequacies, achievements, quirks, etc.  That's the way it has to be.  It's that, or stop writing....but I can't....I love it too much.