Time

Time is a funny thing.  It keeps you going.  It provides joy and laughter, pain and tears.  Sometimes you have too much.  At other times, not enough.  I suppose the same is true with life.

Once upon a time, I wrote for the therapeutic value.  I wrote for the enjoyment.  I wrote because I had something to say.  I wrote when I was at a loss for words.  Then the writing slowed but not because any of the motivators had vanished.  Rather, it seems TIME to write had vanished.

As I'm realizing that nearly a year has passed since my last post, my mind is reeling with the knowledge of all that has transpired since.  As I try to compartmentalize the events of 2015, I shall endeavor to share my year's journey with you.

Josiah completed his first year of preschool, in June.  His 5 year old brother completed his last year of preschool in May.  The oldest brother completed the 2nd grade, at the end of June.  The second half of the year brought cold weather & snow.  It slowly welcomed Spring.  Recess resumed for children.  We felt less trapped. 

The slightly warmer weather made us long for Summer.  By April, we looked forward to summer vacation and the increased opportunity to "make memories" with the boys.  We began planning a trip to Disney (to commence in 2016).  We couldn't wait for less school, more fun.

It was during these months that we became friendly with another local family.  They have a daughter who also has Down syndrome.  She is 6 months younger than Josiah.  She began school in May.  She and Josiah were placed in the same classroom.  We were thrilled.  Josiah liked her; she liked him.  Everything was simply right.

Josiah bloomed during his first year.  He had made huge strides with fine & gross motor skills.  He was signing more & attempting to speak more.  The older boys had enjoyed a great year.  School was coming to an end.  We couldn't wait for summer.  Time moved slowly but summer was finally upon us.

"Making memories" is what we do best.  Now was the time for fun.

Fall into Winter

As the summer days passed by, we spent our time making memories.  Our oldest attended summer camp, the middle boy attended preschool, and Josiah had his usual fill of early intervention and outside therapies.  With each passing day, we could feel Fall approaching.  Each day, we were one day closer to the change that each Fall brings.  By the third week of August, we frantically tried to slow time down.  We added family activities to the schedule...knowing we would soon be limited by school-year scheduling.  By the last week of August, it had all come to pass.  Summer had ended.  The oldest began 2nd grade.  The 4 year old embraced a new school year, at his preschool.  Labor Day was right around the corner.

As September began, we counted the weeks until Josiah turned three.  The big boys were in school, full time.  Around the corner, big changes were in the air. Josiah was about to start preschool, in the local public school.  Our first IEP was in our immediate future.  Early Intervention was going to come to a grinding halt.  Our way of life, for 3 years, was about to change.  Though exciting, we were feeling the nervous energy that often accompanies anticipation.

By mid-Sept, we had received notice of the scheduled IEP meeting.  I didn't know if I should be excited or dread it's very existence.  I had heard nightmares about IEP meetings, attitudes, different perspectives where no one is willing to work together, etc.  The morning of the IEP meeting finally arrived.  Carl & I arrived to the school with Josiah's EI worker & an advocate from the local DDS office.  We were, truthfully, prepared to be unimpressed.  

I was never so pleased to be proven wrong!!!!  The IEP meeting was amazing!  They had considered everything & then some!  Josiah's needs had already been considered.  Special accommodations had already been thoughtfully planned out.  They were offering him 7 therapies per week, in addition to his classroom work.  They offered him an extended school year so that he can attend in the summer.  They had already included sign language as a method of communication (as Josiah has few spoken words). 

I asked only for two things: 1.  Potty training - it was included before I could finish speaking.  2.  A communication log - which was implemented on day one & has been a constant!  We walked away impressed.  We walked away knowing that we were blessed!  This was the right place for Josiah.  We didn't need to fear the unknown any longer.

As we prepared for Josiah's first day of school, we said our goodbye's to Early Intervention.  We said goodbye to the Early Intervention Child Coordinator who had been with us from the very beginning.  It was a strange sensation....to be actively involved with a team of people, then they simply stop coming.  Strange, strange, indeed.

Before we had time to mourn the loss of our friends, we quickly met new friends as Josiah's Physical therapy was moved to an outside agency (where he was already receiving OT and Speech).  Josiah transitioned nicely to all the changes.  Before we knew what was happening, it was the first day of preschool.  He was up, fed, dressed, and outside waiting for his bus.  We could hardly believe our eyes.

 

And so it began, mid-October.  Josiah attended his first day of preschool.  There were a few tears, the first two days of school, then he was off and running.  He attends school 4 days per week, 2.5 hours per day.  During those four days, he received OT 2x/week, PT 2x/week, and Speech 3x/week.  Two afternoons per week, he attends therapy at an outside agency....OT, PT, and Speech, each day.  That's 13 therapies per week!!!  Unbelievable!!!

So, four days per week, this Mama finds herself with 2.5 hours to get errands done, clean the house, do laundry, change beds, etc....without interruption.  By lunch time, each day, Josiah happily arrives home.

This has been our life for the past 10 weeks.  Meanwhile, we've celebrated family birthdays, enjoyed Thanksgiving, survived a stomach bug, and now excitedly prepare for Christmas.

This Mama finds herself tired....blessed, but tired.

 

Enjoy every single moment, as they cannot be repeated

Therapy Overload

Being proactive, we called Early Intervention before Josiah was born.  We called again about one week after his birth.  He was six weeks old when the assessment took place.  Starting at six weeks, he was seen weekly by the case manager, physical therapist, and occupational therapist.  Three appointments per week, for the first year-and-a-half.  Then speech was added.  Four therapy appointments per week, at home.

Shortly before his second birthday, the occupational therapist moved and we had an issue with the speech therapist.  Knowing he had one year left with EI, and then would age out, we switched occupational therapy & speech therapy to an outside agency where he would receive both services twice weekly.  Two appointments at home, four appointments outside the home.  Of course, playgroup was additional.  These didn't account for 'extras' - trips to Children's, the DS clinic, pediatrician, or dentist.

Given the last three months (with C being ill), this Mama is finding herself on therapy overload.  C used to take Josiah to his outside appointments (two days per week - two therapies back-to-back).  I would attend to grocery shopping and the like.  All of that has changed as C can no longer lift Josiah.

Thankfully, C drives the two 'big' boys to/from preschool/camp each day, while I stay at home preparing Josiah for his day.

Some mornings roll around and I think to myself, "I just can't do this today."  Yes, I have cancelled therapy due to my own inability to carry on.  It doesn't happen often, but happens more than I like to admit.  I week, I simply decided to take the week off.

Josiah is such a little trouper as I carry him from appointment to appointment.  He arrives with a smile, every time.  He works hard at everything he does.  I sit, exhausted, watching him.

He ages out of EI in 3 months.  That will end the home visits.  Physical therapy will get added to our list of outside appointments - six therapy sessions per week.  He will receive some services at school.  We will continue to take him to playgroups, when scheduling allows.

Sometimes, I am tired just thinking about our schedule.  I feel like we're on therapy overload.  I wonder if other parents feel that way too..... 

Change is in the Air

Kids grow so fast.  Josiah will be three in October.  That means he ages out of Early Intervention (EI).  His services (physical therapy) will be switched to the rehabilitation center where he received OT (occupational therapy) and Speech.  EI will also prepare Josiah for transition to the public preschool in town. 

We were determined to send Josiah to the same preschool that his brothers attended.  EI (early intervention) assumed the path of the public preschool.  After all, Josiah has Down syndrome and is granted an automatic spot in their program.  We didn't know a lot about the program but we initially railed against it.  It wasn't personal.  I guess we didn't like the idea of something being presumed for our son.  We didn't like the idea that he would be 'singled out' because he has an extra chromosome.  His big brothers didn't go there; why should he?

Acting on intelligence, and not simply emotion, C & I decided to take a tour of the public preschool classroom.  We were so glad we did that!!!  We brought an entourage with us that day.  C & I had Josiah as well as my best friend (who is a preschool teacher at another location).  The EI worker met us there, as well.  The assistant principle was taken aback by the amount of people with us.  The fact that we brought Josiah (something they encouraged me not to do) also may have thrown her.  However, if he was to attend there - we needed to see how he would react to the environment.

We were accompanied to the preschool classroom and asked to sit against the wall to 'observe.'  After about ten minutes, Josiah couldn't contain himself any longer.  He wanted down.  He wanted to play.  The lead teacher graciously allowed him to join a small group of children who were playing with blocks.  He sat in the group, like a pro.  He stacked blocks, was mindful of other children, and even used a few signs to communicate his wants and needs.  He fit in just fine.

We watched small groups of children move from 'station' to 'station,' always with a teacher.  The classroom was organized; Teachers were amazing.  We sat stunned.  Suddenly, our feelings about preschool changed.  There are only 10-12 children per classroom in this public, integrated, preschool.  We couldn't tell the 'peer children' from their counterparts.  

We walked out of the school with the realization that what we 'plan' isn't always the best plan.  This preschool program quickly proved to be the best option for Josiah.  When you are able, and willing, to be open to possibility - God shows you the best path to take.  He certainly had His hand in this one!

The teachers have since been to the house, to observe Josiah in his natural environment.  We learned that the teacher has two deaf children, of her own.  She is fluent in sign language and knew every sign Josiah used to communicate with her, even his approximations.  We were thrilled!!  Josiah took a liking to his new friends.

When the school year resumes in September, the IEP meeting will be scheduled.  Josiah will attend preschool Monday-Thursday, two-and-a-half hours per day.  A bus will pick him up at home, and return him after school.  He will receive some services at school, in addition to those he receives at rehab.  

I am nervous about sending him 'out' in the big world but have faith that he will grow and learn.  I know it will be good for him.

C & I will suddenly find ourselves with 3 hours per day where we are kid-free.  That will be a new experience for us.

In the meanwhile, we will spend our summer experiencing life with our children.  We will excitedly prepare for what's to come.  We will continue to be grateful for the many blessings in our life.

Who's This New Kid???

Since our return from Disney, Josiah has been an amazing little boy!!!

First up...no more baby food...

We had struggled to transition Josiah from baby food to 'people' food.  It's not all his fault, it's partially ours.  Face it, baby food is easier (at a certain level). Baby food is more costly, but less time consuming.  Josiah had been sick for the two weeks leading up to Disney.  He favored baby food while he was sick. Admittedly so, we preferred it too.  Then we went to Disney, and his sickness was still questionable.  He seemed to have developed a secondary lactose intolerance (I must admit, I'm not sure what that means, how long it lasts, or when to know it has ended).  As a result, we stopped feeding him yogurt (the one food he ate consistently).  While in Disney, he ate (almost exclusively) baby food.  It was safe & kept him well.

We arrived home and, honestly, just decided to stop feeding him baby food.  Well, low and behold - it worked.  Suddenly, Josiah was eating people food (and was happy about it).  In the three weeks we've been home, Josiah has eaten pot roast, beef stew, chicken, onion rings, hamburger helper, mac & cheese, and the list goes on.  He hasn't touched baby food in weeks!  We are ecstatic!!!  Just last night, I noticed the secondary gain....Josiah's orange tint has finally disappeared!!!  I thought it would never be so!!! 

Here's Josiah, after eating a piece of birthday cake last week.  Look at the smile on that face!!!

 

Second up...mister curious...

The day we arrived home, I thought Josiah seemed more curious....as if he was willing to explore more.  Well, I don't know what that trip to Disney did - but it is amazing.  Josiah is an exploration monster.  Luckily, he doesn't risk safety.  He explores things in a whole different way now.  He challenges himself to do things.  He explores things in a whole new way.

This has led to climbing up and down off the couch and beanbags.  He thinks sliding down a slide (face first) is hysterical!!!  He is such a curious and fun little boy.  He makes my heart melt (and sometimes causes my hair to turn gray) lol.  Here are a few of his recent explorations...

Third...suddenly signing...

We have used sign language, with Josiah, from birth.  Knowing language may be difficult for him, we hoped sign language might help.  He has always seemed to understand sign, but not usually willing to utilize it.  Since our return, he has been signing "be nice," "more," "all done," "eat," "sleep," and "phone."  He's blowing them away at speech therapy, too!  Mister stubborn is suddenly makes sounds (and signing) on demand.  It is absolutely amazing!!!!  I'm in awe of this little boy :)

Fourth...about to walk...

Josiah has been walking with his toy walker, for months.  Occasionally, he takes a few independent steps.  Well, last night was mind blowing!!!  He stood up in the middle of the room & took 4-5 small steps.  Then he stopped (while maintaining a perfect stand), regained his balance, and continued.  He took another 4-5 little steps, stopped, regained his balance, and repeated one last time.  He took 4-5 little steps and lunged onto his Elmo bed with a resounding laugh!  He knew what he had done!  In excitement, I texted his physical therapist D.  I told her what he had done.  She texted back.  "Don't tell him I know.  He'll stop doing it if you mention me."  I truly laughed out loud.  I'm not sure she's wrong, by the way....

Lastly...scores...

I stopped looking at scores from Early Intervention, and the like.  I don't like them.  They do not accurately reflect my child's capabilities!!  With that being said, at play group parents are asked to fill out a questionnaire (of sorts).  It assesses a child's overall development (and where they fall in the spectrum).  Josiah's scores have always gravitated towards zero.  No matter the age, his low muscle tone inevitably biases the score.  It's ok and doesn't bother me.  Last week, we arrived at play group & received the results of the last assessment.  In all categories, he fell ON THE CHART!!!  He "needs improvement" in all but social - but he actually fell on the chart!!!  He didn't score zero's, like he had previously.  Our little man, is catching up!!!  So much so, that I keep asking "Who's this new kid?"  :)

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

Back Into the Swing of Things

I'll chalk last weekend up to a complete loss.  C and I felt like we were in coma's for much of the weekend.  Monday approached like wild fire.  I was glad J1's teacher had sent work along for him to complete while on vacation.  Although he had completed everything, our vacation extension meant he had missed several extra days of work.  I knew he was going to have to catch up quickly.  J2 is in preschool, thus no homework.  He was, however, going to have to jump right back into full swing.  Josiah hadn't had therapy in three weeks (2 weeks in Florida, and sick the week prior to leaving).  Monday was going to be a test.

After getting J1 and J2 off to school on Monday, we headed to play group with Josiah.  It was like we had never left.  Over the weekend, we noticed that Josiah seemed more independent.  He seemed to be exploring more.  In Florida, the tile floors made exploration difficult.  We thought maybe he was just happy to be in environments conducive for small children.  Here, in play group, he was definitely acting more independent.  He was crawling up (and down) the stairs to the climbing structure.  He was suddenly taking more risks (but not dangerous ones).  Little man....

Monday afternoon brought out the EI worker (whom Josiah hadn't seen in weeks).  She was accompanied by her supervisor and Josiah's PT (an occasional co-treat is not uncommon).  Well, that didn't go so well.  For the next 60 minutes (or so), Josiah cried like nobody's business.  He didn't want to stand.  He didn't want to walk with the walker.  He simply cried.  He sobbed.  Yes, it was not his finest hour.

Tuesday morning, he returned to Speech & OT (after his three week hiatus).  What a difference a day makes.  He stunned the speech therapist.  He made more sounds than ever.  He signed more, all done, yes, and no.  The speech therapist was elated (he is usually quite stubborn with her).  OT was just as successful.  He used the same signs with her.  He even said "bye-bye."  OMG!  This kid is amazing!!!  Thursday's sessions were about the same. Josiah is vocalizing more sounds.  More exciting than that (for me), he is finally using some signs.  

After feeling like we were never going to be able to wean him off baby food, we have finally accomplished the impossible (or so it seemed).  We have gone the better part of the week without baby food.  Josiah has happily eaten pork chops, rice, pot roast, potatoes, mac & cheese, tuna fish, chicken alfredo, onion rings, bread, and beef stew.  His first week without baby food!!!!  Yay Josiah!!!!

I feel like Josiah has turned a huge corner this week.  He is vocalizing more.  He is FINALLY signing (even if just a few words).  He's imitating a LOT!!!  He's more engaged in active play.  And, he's eating big people food.  He never ceases to amaze me.

I love my life <3.

 

Holidays and Happy New Year

It seems that Halloween ends and Christmas becomes this Mama's focus.  Do I have my list?  What am I going to buy for everyone?  How much should I spend on each person?  Etc.  Yes, Christmas definitely becomes a focal point in this house.

Thanksgiving was beautifully spent with family.

Two days later, a little elf arrived at our house.  This was to be our new family tradition. We read the book (the boys had already seen the tv special).  The boys set out on their task of naming our little elf.  Before long, the name "Stinky Chips" was chosen.  Stinky Chips was a good little elf.  He didn't get into much trouble and was only touched once by our oldest (age 6, at the time).  An emergency intervention gave Stinky Chips back his magic and the rest of his time here was without incident.

Yes, Stinky Chips helped pass the time awaiting Santa's arrival.  We did a lot (most) of our shopping online this year.  Gifts simply arrived at our doorstep.  We wrapped and labeled them.  It just seemed the easiest thing to do.  The oldest is in 1st grade, has almost-nightly homework, and karate 3x per week.  The middle child is in 1/2 day preschool, and is a whirlwind of activity in his own right.  Josiah has EI 2x per week, OT 2x per week, Speech 2x per week, and playgroup 1x per week.  After adding in random doctor's appointments, errands, etc, there hardly seemed time to shop.  Online shopping saved my sanity.

In the middle of Holiday preparations, we decided to plan a trip.  My parents are going to Florida in 2014 and asked us to join them for a portion of the trip.  So, after searching for the perfect price (which doesn't exist), we purchased airfare for us to fly to Florida.  Disney is the destination.  2014 holds something fun to look forward to....

We managed to keep the upcoming trip a secret....until Christmas Eve.  Then, we told the boys.  They are excited as kids can be who have no idea what to expect.  I am excited for them.  They are going to love it.

For the third Christmas Eve, we celebrated at my parents home.  We read the same story that has been read to my family since 1873.  We opened gifts from those would not see the next day.  We ate great food.  Once the older traditions were complete, we wrote messages on balloons to Scott (my beloved brother), formed a circle on the back deck (each with a hand on the balloons), played "We'll meet again" (Inkspots), wished Scott a Merry Christmas in Heaven, and released the balloons.  

The next day, we celebrated at our own home.  It's always fun when the big boys run downstairs to tell us that Santa Claus has visited our house.  We spent the day opening gifts, preparing (and eating) dinner, and visiting with family.  It was a lovely day.  Josiah was particularly fun this year.  He's two.  He's a fun age for a Christmas celebration.

Though I usually enjoy leaving my tree up, this year it only lasted a couple days into the new year.  Beneath the branches, had become a 'dumping ground' for all the opened but yet-to-be-put-away gifts.  Josiah had also become a master at pulling on those aforementioned branches.  We had a dumping ground under a very tilted tree.  Yes, it was time for the tree to go.

As the new year approached, one more test had been passed.  We made it through the month of December without RSV.  This is the first year Josiah has made it through the month of December without RSV and a resulting trip to Children's. 

Happy New Year!!! 

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.....

 

Playin' Ball with Mama 050313

Josiah has finally mastered the deliberate release.  He can now play ball (a game which he loves).  Here's a cute video I took the other night.  Enjoy :)

March Madness

For the first time ever, a month slipped away without me writing.  It's funny how often I think to myself, "I need to write in the blog; I haven't written in a while."  As fast as that thought enters my mine, it's gone.  Dinner needs to be cooked.  The kids need to be tucked in.  On and on the chores seem to stretch.  At the end of the day, my need for sleep supersedes the desire to write.  Each morning comes too early, greets me with the leftover chores of yesterday, and new necessities that lie in wait.  How I dream of having the time to write.  How I dream.... 

If this blog could only capture one tenth of what I think about....

I used to think that I was born in the wrong time.  "I was born for Vaudeville; I was born too late."  Decades passed with those thoughts in mind.  Of course, being a believer, I've always known that I was born exactly when He wanted.  However, what seems like a lifetime later, I see great reasoning.....Josiah.  Imagine if he had been born during Vaudeville time.  He might have ended up in an institution.  Perhaps, he would idled away his time hidden at home - a secret, kept hidden from the world.  His secret life would have been short.  The holes in his heart would have assured his brief solitude existence, on this earth. 

I think a lot about my brother, who died at 50.  I was eight months pregnant when I lost him.  Addiction stole him from me, from us.  It's ironic that he died one month before Josiah was born.  Scott always had a special place in his heart for the downtrodden, the gentle ones, the ones who may need a helping hand.  Scott knew that Josiah had Down Syndrome, but was never allowed to share in the miracle of this little boy.  I wish Scott could see him.  I wish Scott could be the Uncle he always dreamed of being (his addiction was always an obstacle).  Instead, he left us.  I like to think that Josiah needed a guardian angel so much that God gave Scott a special place in Heaven to look after Josiah.  In the first 4 months of life, how Josiah needed his guardian angel.  How I miss my brother....I want to start a foundation in his name.  I want to write a book about him.  Someday, both will happen.

The month of March celebrates "World Down Syndrome Awareness."  It occurs on the 21st of March.  3/21.  Three copies of chromosome #21.  That's the significance of the date.  This year, there was a campaign to wear crazy socks that day.  It was all in an effort to raise awareness.  Someone sees your crazy, mismatched socks & asks why.  You tell them all about DS.  Well, I didn't go anywhere that day (to speak of).  None the less, I was sporting great, crazy, colorful socks.  I took a picture of my feet & posted them to facebook.  I shall do that every year.  Won't you do it too?

I often think to myself, "I didn't know I wanted a child with Down Syndrome."  If you don't have a child with Down Syndrome, you may not understand that statement.  If I could take away Josiah's Down Syndrome, would I?  No, because he wouldn't be Josiah anymore.  Josiah is a beautiful boy who happens to have an extra chromosome.  He has blue eyes and blond hair (so blond that he has been called 'towhead').  He has a smile that radiates through the darkest of moments.  His laughter is contagious.  I wouldn't take away any of his traits.  I wouldn't change any thing about him.  He is pure delight.  He is miracle.  He is a true gift from God.  It's just that simple.

March's schedule continued uninterrupted.  Josiah has his weekly meeting with his EI (early intervention) child care specialist (K).  He meets weekly with his physical therapist (D).  He meets every other week with occupational therapy (C) and with speech therapy (P) in between.  He did, however, start group at EI....movers and cruisers.  I just love the name.  It's a bunch of kids crawling, moving, and toddling around a great space.  We're only a couple of weeks in, but it proves to be a great group.  It's run by a physical therapist at the EI center (unlike his individual sessions which are at home).

Josiah is now crawling like a maniac.  He can disappear from a room before you realize he's moved.  He is grasping toys very well.  He now enjoys throwing objects lol....it's too cute.  His purposeful release is getting better and he truly enjoys playing.  He eats nilla wafers like they are going out of style lol.  We are slowly introducing him to new things.  He will stand and hold onto me.  When D tries this each week, he screams bloody murder - he's a manipulative little boy (hahaha).  He's quickly approaching 18 months.  In May, he'll have his next assessment with EI.  I can't wait to see the results of the new assessment.

I am happy that April has ushered it's way through winter.  The snow has become a nuisance.  I am ready for warm weather, sunshine, playgrounds, and sitting outside.  Josiah starts another playgroup (non EI-related) this morning.  Unfortunately, that means this Mama needs to get a little boy ready for the day.  I'll update again soon.

Be well, my friends!

Tuesday's Huge Stride

February vacation began on Saturday, three days post-moving-home (from Blizzard displacement).  I taught on Saturday, visited with my Aunt, and accomplished things around the house.  Sunday and Monday (the holiday) - I did nothing.  I stayed in my pajamas, fed the kids, bathed the boys, and otherwise sat on my behind....a much needed break.

This morning started as usual.  The three year old whom we now refer to as the human alarm clock arose at 6:06am.  We call him the human alarm clock because he awakes, without fail, between 6:00-6:30 (usually between 6:05 and 6:20).  We managed to get him ready for preschool and C left with him, running, at 7:48.  At 7:52, around the corner, they determined that they must have missed the bus.  C drove him to school, arriving there at 8:10.  As it turns out, the bus isn't running this week due to vacation week. 

Meanwhile at home, C (occupational therapist) arrived at 8:15 for her scheduled appointment with Josiah.  He was up, changed, dressed, nursed, and ready to play.  C came with a friend today.  It was twice the fun, twice the attention.  Josiah loved it.  While D (physical therapist) continues to work with Josiah on gross motor, C focuses more of her attention on fine motor (grasping small object, gripping, eating, etc).  Josiah is making good progress in this area.  He laughed, flirted, and worked hard for C today.  He did very well.

By 9:30, the session was over.  Josiah was exhausted.  He ate his cereal (baby oatmeal & fruit), the six yr old got ready, and we were out the door.  Our adventure was one of many small accomplishments.  We paid bills, dropped paperwork off, picked up a few items for Josiah, kidnapped my Mom (who returned home this past weekend), visited my aunt, returned my Mom, and made our way to preschool.  We got there at 3:45.  We had a busy day but felt good about all we had done. 

We arrived home at 4:15.  We were home for the night.  To satisfy a six year old's desire, we ordered pizza for dinner (meatball sub for the 3 yr old 'cause someone doesn't like pizza lol).  We had a fun night at home.  Everyone was in a good mood.  Things were fairly mellow.  We even watched a movie together.  Then it was time for the 3 yr old to go to bed.  It was about 7:30pm.

As he brushed his teeth in the bathroom, with C supervising, I sat in the living room with the six yr old, and Josiah.  Josiah was on the floor, his oldest brother a short distance away.  As we've seen him do before, Josiah got up on all fours and began rocking.  Something was different.  There was a determination in his eyes that was not to be missed.  I grabbed my phone and frantically opened up the video app.  This is what I captured:

Even as I type this, I am in awe of an amazing little boy.  He's sixteen months old and crawled for the first time tonight.  I couldn't be any prouder.  It's not about age.  It's about a little boy who demonstrates more strength, determination, resiliency, and spirit than anyone I have ever met.  Josiah is my hero and my life has been blessed, tenfold, because he is here <3

The most important moments lie neither at the beginning nor the end,

but rather in the journey getting from one to another.

DS Clinic

Josiah had his second visit to the Down Syndrome Clinic.  We were up at 4am; we woke the boys at 5am.  We knew it was going to be a family trip; we had to leave too early for school to be an option.  We were only five minutes late leaving.  6:20am - we left the house.

It's amazing that traffic can be such a nightmare at that early hour of the morning.  Of course, when you take into account the rain, it stands to reason.  None-the-less, we arrived at our destination at 8:20, parked, and walked into the lobby at 8:40.  Official check in time is 8:30, so C and the big boys headed for breakfast.  Josiah and I headed up to the DS clinic.

By 9am, he was getting height/weight checked.  Height 29.5 inches.  Weight 21lbs 5oz. Yay!!!  The boys joined me upstairs after a short time.  They came bearing Mama's breakfast - so sweet.

Before long, we were called in to see PT (physical therapy).  A nice padded mat was on the floor.  On it, were several fun toys.  Josiah was pleased to have some floor time, especially after the long car ride in.  He cleverly showed off his ability to roll, sit, get into and out of sitting, side-sit, and the like.  Josiah was proud to demonstrate his ability to get onto all fours and rock back and forth.  He even scooted forward a little.  The PT told us what we have known for weeks - Josiah is just on the cusp of crawling.  It's going to happen any day now.

Next, we met with nutrition.  The meeting was brief.  Josiah's weight is no longer a concern.  His height to weight ratio is the 50th percentile....so he's simply perfect :)

Next stop - Dr. D, whom we adore.  Josiah was happy to smile for her.  Dr. D. was proud of how far he has come since June.  She is very pleased with his progress.

Final stop, this time, was OT (occupational therapy).  It was close to 12:30 and Josiah had reached the end of his tolerance.  He was in tears by the time we reached the last room.  I quickly pulled out a few jars of baby food.  He ate.  He nibbled on a few goodies, from the OT.  She wanted to watch him eat.  Finally, he nursed and fell asleep in my arms.  He was a shot little tot.  It was around 1pm.  He had reached the end of the road.  Best of all, everyone is pleased with his progress.

The day would have been longer, but a few hiccups made for a shorter day.  The dentist was at a conference, so we couldn't check in with them.  Josiah is being treated for an ear infection, so audiology was off the table.  We also need to schedule a cardiology follow up, as well as a first vision appt.  So, four appointments to go....all outpatient and closer to home.

By the time we stopped in the cafe for lunch and made our way home, it was about 4pm.  We were exhausted but very content.

This little miracle continues to amaze us everyday.  Our life is so very blessed.

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..... :)

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....

Early Intervention Summary

Josiah continues to make huge strides with Early Intervention.

D (physical therapy) continues to work with Josiah on a weekly basis; he loves that he is serenaded by her every week lol.  He is making huge strides.  Josiah is able to control his own head now.  When holding/carrying him, holding his head is no longer a priority.  He controls his head amazingly well while being held (supported) in a sitting position.  D even rocks him while sitting, and he is still able to control his head beautifully.  When on his tummy, he lifts his head like nobody's business, and turns it side to side :)  He continues to complain when it comes to sidelying, although today he did so without a single complaint.  His stamina has grown by leaps and bounds.  It's amazing to see.  During this morning's session, D worked him hard for over an hour; He was exhausted but still ready to tackle anything.

C (occupational therapy) has just begun seeing Josiah on a bi-weekly basis.  He's eating more baby food now.  I cannot get over how well he is doing.  Considering his high pallette - I thought he might have difficulties; Once again, we stand corrected :)  C recently observed an eating session.  She was amazed how well Josiah closes his mouth around the spoon, 'chews' his food, swallows, and doesn't allow his tongue to hang out of his mouth. 

K (child specialist) continues to come weekly, as well.  Josiah loves her :)  She takes everything that the above specialists are working on, and does them all!  It's incredible. 

This week, 2 out of his 3 'girlfriends' are on vacation....so it will be a mellow week.

Lots of exciting things going on :)

A New Member of Our Team

On Monday, K arrived for Josiah's weekly session.  KT (OT) joined us.  Josiah enjoyed K and enjoyed meeting his new friend.  The consult for OT was initiated due to Josiah's difficulties in gaining weight.  Of course, we seemed to have broken through that barrier last week.  Thus, I hoped we weren't wasting KT's time.  Josiah enjoyed showing off all of his tricks.  KT, who demonstrates a love for the babies, enjoyed watching, working, and playing with him. 

Josiah is doing so well, and making huge strides every week.  It's exciting to see.  Despite having broken through the weight-gain hurdle, KT will continue to visit monthly for now.  According to the American Academy of Pediatrics, babies should not start "food" until about 6 months of age.  We don't know if the pediatrician will want to start food with him right at 6 months, or if he'll want to wait a bit longer.  Josiah still has limited head control; that may play a role in determining when he starts "foods."  When he does, I suspect that KT will be another invaluable team player.  Josiah was born with an extremely high palette (not unusual in Down Syndrome).  From what I've read, and heard, food can easily become lodged up there, and the child's tongue cannot reach high enough to dislodge it.  OT can be very helpful in overcoming such hurdles.  I am prepared for the (possible) continued eating challenges.  I know Josiah will ultimately prove successful.

As a funny side note....yesterday, I had placed Josiah in his swing.  James (age 2) was in the room alone with the little guy.  I entered the living room only to find James feeding tiny little muffin crumbs to his baby brother.  I softly reminded James that the baby is too little to eat "real food."  All the while, I had to control my laughter.  Josiah had muffin crumbs on his chin, lower lip, upper lip, and under his nose.  He had little bits of crumbs on his tongue which he was happily gumming to death :)  Josiah looked at me, then looked at James and gave him a huge smile.  It was a cute moment.  Josiah seemed to enjoy the momentary break from milk. 

And, did I mention that the aforementioned muffin was chocolate chip????

Exasperated!!!

We took Josiah to the cardiologist today for his first office follow-up appointment, since his surgery.  His EKG was great!  Then, they weighed him.  He weighed in at 9lbs 1.3oz.  At best, given that each office has it's own scale, he neither gained nor lost weight.  At worst, he lost 2oz since last Friday (at the pediatrician's office).  I cannot begin to describe the feeling of complete exasperation, frustration, and despair.

Perhaps it seems like a small thing; perhaps it is.  All I know is this: Josiah weighed 7lbs on 10/12/2011.  Today, 3/2/12, he weighed 9lbs 1oz.  He will be five months old, in ten days.  At Jesse's four-month check up, he weighed 15lbs.  James, at the same check up, weighed 13lbs.  I know the DS plays a role in the slow weight gain, but this isn't right. 

We (the professionals and family alike) believed that the heart problems were contributing to his slow weight gain.  That excuse can no longer be used.  Today's appointment confirmed that Josiah's heart is perfect (a wonderful piece of news that I cannot negate).  Is it the Down Syndrome?  Is it a feeding issue?  Is he not getting enough calories?  Does he simply need more calories than an average child?  Should we start feeding him cereal?  UGH!  The questions race through my tired mind.

The surgeon was very pleased with the outcome of Josiah's surgery.  Josiah's heart "sounds perfect."  His color is good.  "He looks like a different kid."  "He looks more mature in the way he's moving around."  However, "I expected him to come in here having gained a lot of weight so this is disappointing."  (Yeah, tell me about it!)

Up until now, Josiah has been exclusively breastfed.  He doesn't like the bottle; he won't drink from a bottle.  Since surgery, he's been eating every 2-3 hours.  It seems impossible to me that the child has gained no weight but numbers do not lie.  I don't know what to do....that's the feeling.  I hate that feeling.  I'm tired and feel I has so little left to give....

We made our way out of the cardiologists office.  I immediately walked down the hall to the pediatrician's office.  I talked to our favorite nurse M.  I voiced my frustration.  I asked if we should start Josiah on cereal.  I assured her we were doing everything we could to properly nourish our son.  She already knows that we are.  She said she'd call me later.

We did a few errands, picked up Jesse from school, and made our way home.  I was exhausted.  I left a message for our EI worker K.  I know I'll hear from her as soon as she's available.  This afternoon I fed Josiah...off and on....like usual.  I went to the store for groceries and bought a different type of bottle - maybe Josiah will drink from this one.  It's worth a try.

I talked to M from the pedi's office.  The MD said we can start Josiah on cereal.  I needed more than that.  I didn't know what I needed, but that wasn't enough.  I guess I wanted an instant fix....  I was so emotionally spent, my mind couldn't form concrete thoughts by which to gain more information.  I ended the call for lack of knowing what else to say.  Carl was very supportive of my frustration level.  He called the MD's office back again and spoke with our pediatrician.  The pedi is sympathetic to the situation and understands the frustration level.  He suggests the OT (as the cardiologist did), a nutritionist (specifically with the DS clinic), formula if possible, cereal, the new bottle, and high-calorie formula if we request such.  We'll see the pediatrician next Thursday for another weight check.

I called the lactation specialist KF and heard back from her promptly.  We chatted for some time.  It's nice to have someone who knows the frustration of breastfeeding a baby who doesn't gain weight.  She offered some great suggestions.  One by one, I'll try them all.

I talked to K for quite some time after.  She is another fantastic support.  K will put in a referral for OT early next week.  It will be, specifically, for feeding.  I've entrusted that task to her.  We'll see K on Monday and will discuss the details further.

Tomorrow, I'll email A from the DS clinic.  I'll explain what's going on with Josiah.  I'll ask her what I need to do to initiate a consult with one of their nutritionists.  I'll probably hear back from her on Monday.

It's the weekend now....two days, at home, with my wonderful family.  I'm going to try to relax a little.  I'll attempt some of the new suggestions given to me.  Hopefully something will work.  I'm going to try to not let it become all-consuming (although it already feels that way sometimes). 

In the end, everything will work out.  Even the cardiologist said "this is just another little hurdle we have to climb over."  Everything will work out.

Climbing up the down staircase isn't always easy....but it's worth every single step <3