DS Clinic

Wednesday night, Josiah went to bed at 6:30.  The 'big' boys were in bed at 7.  We had succeeded in getting them to bed early.  C and I were in bed by 10pm.  We knew morning would come quickly.  We were right.

The alarm went off at 3am.  I continued to hit 'snooze' until 3:36am.  I couldn't delay this any longer.  I was up, showered, and dressed by 4am.  At 4:10, we were waking the three children up.  Our goal was to leave at 5am.  After feeding and dressing the kids, we were only a few minutes late.  At 5:17, we were out the door, filling up the gas tank, and headed for the highway.  Josiah had his Down syndrome clinic on Thursday.  If we don't leave early, traffic can be a nightmare.

At 6:30am, we had made the 30mile drive.  We were parked in the garage, one block from Children's.  We made our way up to the hospital.  The morning had gone smoothly, so far.  The big boys played on the musical stairs, then we were off to have breakfast.  After eating, we decided to roam around a bit.  We checked out a few of the important places C and the boys may want to spend time, while waiting for Josiah and I.

By 7:45am, we were checked in at the DS clinic.  We were about 45 minutes early.  The first of many checks started.  First, height and weight.  Josiah weighed in at 27 lbs.  He is 33.5" long.  Ha!!!!

By 8:30, Josiah and I headed in to meet with the Director of the DS clinic.  C and big boys were off to the playground.  Josiah and I sat with the MD until almost 10am.  Growth was charted.  Once upon a time, Josiah's plotted numbers wouldn't land on the growth target.  Once upon a time, weight was a huge concern.  Once upon a time, they said he was failure to thrive.  Once upon a time....  This day, however, was a different story.  On the 'normal' growth chart (which Josiah used fall in the 0 percentile), he proved them all wrong.  For weight, 56%.  Height, 29%.  Height to weight ratio, 79%.  On the DS chart, he falls in the 90%.  That's right, 90%!!!!

Medical history was reviewed.  His thyroid from January looked good.  He doesn't need to be rechecked until January.  Josiah will need a sleep study by the age of 4 as sleep apnea is common in children with DS.  Coincidentally, Josiah's tonsils are large - so this is something they will monitor.  If all stays the same, Josiah will get a sleep study near his fourth birthday.  No other concerns at this time.  Yay!!!

We then met with the physical therapist (PT).  That was Josiah's favorite part of the morning.  He was able to get on the floor and play on the huge mat.  He had a blast!!!  The PT was impressed with what Josiah is doing.  Josiah will continue to get PT through early intervention (EI).  Hopefully, walking will be in his near future :)

The meeting with nutrition went well.  Josiah is eating well and tolerating a variety of textures and flavors.  We are fortunate.  Josiah is doing great!  The meeting with occupational therapy (OT) went equally as well.  Josiah is making huge strides.  The OT was thrilled with Josiah's progress thus far.

Upcoming appointments/follow ups were reviewed.  During the Fall/Early winter months, we'll revisit orthopedics, ENT, and vision.  Dental will continue to be followed locally.  Flu shots are this weekend.  I was given the option of adding audiology to the day's events.  I opted to follow up locally.  I will try to get that scheduled for next week.  That is that!

It was 12:30 and we had had a great day at clinic.  It was fun seeing friends old and new.  We will see them all again in the Spring.  

We left knowing how lucky we are.  We have three beautiful, happy, boys.  We revel in the beautiful moments.  We take nothing for granted.  Life is good!!! 

A Switch in Therapies

Sometimes change is needed.  Recently, we found that to be true.

Josiah was receiving speech and occupational therapy twice per month.  That had been the schedule for months.  As he nears his second birthday, I wondered if that was enough.  After talking to other parents of children with Down syndrome, we decided to switch things up.  We reached out to a local rehabilitation center that offers traditional rehab-based therapy.

Josiah was evaluated by their clinicians, two weeks ago, for speech and occupational therapy (OT).  He was deemed eligible for both services, twice weekly - that is quadruple the services he had been receiving.  

The evaluation for speech deemed him age-appropriate for receptive language skills; he understands everything.  His delays, however, in expressive speech were apparent (this was not new news).  Josiah says three words.  He will be two next month.  They have suggested using a communication book.  Where Josiah's receptive language skills are so keen, they feel he is a great candidate for such a tool.  We are excited to try this new communication aide.

OT will continue to work on fine/gross motor skills.  I anticipate huge strides as the number of sessions per month have just multiplied x4.  I am excited as change is in the air.  Fall will be an exciting time for Josiah.  I believe that huge things are going to happen for him.  

What an exciting time it is.....

 

31 for 21 Blog Challenge: DAY THIRTEEN: Birthday Weekend

I spent the first few hours Saturday teaching at the school of performing arts.  It was the first day of the new program - a musical theater program for children with Down Syndrome.  There are only a few students right now, but I know this will grow in time.  Class was fun.  The kids were great!!!!  This is going to be a blast.

I was home by early afternoon, and we spend a Saturday at home.  I keep marveling at Josiah - I am in awe of him; I am in awe of my three little guys :)

Tomorrow (Sunday), we are having a big family get-together for the "October birthdays."  In our family, there are four.  Josiah, my nephew, my aunt (who shares Josiah's birthday, 83 yrs apart), and me. 

Here's tonight's question....should I let Josiah do a face plant in a cupcake?

We allowed both our older boys to have their first taste of cake/frosting on their first birthday.  However, they had both had table food (even if minimal) by the time their first birthday arrived.  Josiah has not had the same experience.  He does very well with food, but it's been (primarily) baby food.  AND, he is still breastfeeding.  The older boys were walking at 11 months; Josiah is still working on being able to sit.  So.....what to do???

Regardless, I'm looking forward to the get together.  We're having another party later in the month.  For both, Josiah will wear his "birthday boy" outfit (a very cute one-piece outfit that James wore on his 1st birthday).

Looking forward, we have C visiting this week (occupational therapy) - she just asked for permission to complete a four-visit infant massage therapy with Josiah - I said yes, of course.  That will begin soon.

Beyond that....it's school for the big boys, EI (early intervention) for the younger ones, first teacher conference, fundraiser, and a trip to a Pumpkin patch with all three kids.  It'll be a fun week :)

It is late and I have a lot to do before the party.  I'm off to bed.  Sleep well my friends.

"Your birthday is a special time to celebrate the gift of 'you' to the world"

- unknown author

Thankful For a Rainy Day

We have survived 5 days of school, 4 colds, 4 EI visits, 3 trips to the pediatrician, 3 flu shots, 2 on 'cough medicine' (ie honey), 1 fever, 1 ear infection, 1 preschool assessment, and 1 antibiotic.  This is just since Sunday!  Good Grief!  We need this weekend to recover.

We had planned an outing for today, but given the illnesses of the week (mixed with today's rain) - we are staying home today.  I need to get caught up on some much needed cleaning.  Tomorrow is our first Buddy Walk - I am very excited!  I'm just hoping the rain cooperates with us.

Monday, I cancelled Josiah's EI visit with K.  I think that might be the first appointment I ever cancelled.  That was the day we took Josiah to the MD due to a fever.  On Tuesday, we were back at the pediatrician's office for scheduled flu shots for all three boys.  They were troopers!

Wednesday, Josiah met with C (occupational therapy).  He did a great job, as usual.  Thursday, he met with D (physical therapy).  This wasn't an 'all-star' week (like last week), but he did very well none-the-less.  Josiah continues to prove increasing strength, stamina, and determination.  He is sitting (with support), and can stand (with even more support).  He squirms all over the place when on the floor - I suspect crawling isn't too far away.

It's been a busy, yet non-exciting, week.  It was exhausting, actually lol.

Stealing moments for myself seem difficult, at best.  Even now as I write, I struggle to get the thoughts in my brain transformed into words on paper.  The 2 year old stands at the top of the stairs, steadfastly, screaming "MOMMY!"  How 'Mommy' needs a break! 

Sometimes it's best to give in.  I shall cut this short and attend to my family.  I will attempt to find some quiet time later to share more with you.

Happy rainy Saturday everyone!

Falling Back into the Swing of Things

Now that the kids are getting older, I realize how busy life can get in September. 

We celebrated a 'first' anniversary - remembering the life of my oldest brother.  He made choices we didn't understand.  In September of 2011 he died, on the streets, at the age of 50.  Although I don't miss the nonsense, I do miss him.  I miss my brother.

Our oldest began Kindergarten.  Here, the children attend full-days.  He takes the bus to and from school every day.  He leaves at 7:40am and arrives home at 3:10pm.  He is doing well.  He is already recognizing more letters and is proudly demonstrating math skills he has learned.

Our middle boy began early preschool.  I wish the transition to school had been as easy on him.  I don't know if it's been harder on him, or us (watching him struggle).  We're in touch with the school, the administration, and the teachers.  He's already turned a corner.  We're waiting patiently to see if things improve further; we hope they do.  (Early Intervention) EI continues to work with him on his speech.  One recent, and major, accomplishment has been his willingness to say goodbye to his binky (except at night).  This, in itself, has led to an improvement in speech.  We're hoping for major strides in the next three months because in December he will age-out of EI.

Josiah continues to amaze us!  We finally had his 'six' month pics taken.  He was 10 months at the time, but who's counting.

Josiah continues to receive two EI visits per week.  One from K (his child care specialist); the other from D (his physical specialist).  Every other week, C arrives for OT (occupational therapy).  In the coming months, he will begin receiving speech therapy.  The progress he is making is astonishing (pics below).

Our first Buddy Walk is next week.  We are tremendously excited about it.  I'll be sure to tell you all about it.  We can't wait!!!!

Next month is sure to be a great month.  October!!!!  It's Down Syndrome Awareness Month.  Josiah will also celebrate his first birthday.  Amazing stuff!!!

Finally, for those of you who enjoy pics.  Here are some recent ones (mostly taken during Josiah's EI sessions):

Here, he demonstrates his ability to proudly hold his head high.  His arm extension is wonderful!  Belly time has become fun for Josiah.  Catching him on his belly is actually rare these days as he loves to roll now.  Gates have become his best friend (as they constantly save him from getting into forbidden areas).  It's no longer uncommon for us to turn our back, only to find him on the other side of the room mere moments later.

The task of sitting is an obstacle anxious to be overcome.  Josiah is starting to understand its importance....if only the balance would cooperate.  With a toy carefully propped, he does quite well.  It's only a matter of time before he's sitting independently :)

"Look, Mom!  Only one hand!"  It's a good thing that K is holding on.  Josiah doesn't realize that his ability to fall over is greater than his ability to sit lol :)

This isn't the best pic of Josiah's face but it clearly shows that he is now tolerating weight-bearing on his legs/feet.  This is a huge step!!!  It's very exciting.

Josiah is learning what it feels like to bear weight on his knees.  This kid is such a trooper.  He is manhandled frequently and tolerates it like a champ :)

This was taken yesterday as our family enjoyed a much needed-day-to-ourselves outing.  Fun was had by all.

Updates coming soon: Weight and MD stuff.....

October's goal: Daily blogging..... :)