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!!! 

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.....

 

18-Month Visit and Other Stuff.

We brought Josiah to playgroup on Monday, as scheduled.  I think it was the best session yet.  He tried to kiss a few of the pretty girls (his standard protocol).  He cooperated with Miss J (the PT who runs the group).  He was not without complaint - but he cooperated none-the-less.  K came in the afternoon and had a great session with him.

Josiah's speech therapist cancelled their biweekly session on Tuesday a.m. due to a stomach virus.  We were thankful she chose not to share that with us.  It worked out well, as Josiah was able to sleep in (which he loves to do).  We woken him by 9, had him fed, and headed out for his (much anticipated) 18 month check up.

We arrived at the pediatrician's office and were ushered immediately into a room.  The MD arrived and was met with big smiles.  Ears were the first order of business.  Both ears - clear!  Yes!!!  Josiah was very cooperative with the usual pokes and prods.  He was weighed.  23 pounds, 8 ounces.  He was measured.  32" tall.  The MD remarked as to just how well he was doing was a "Down's baby."  I remarked, "For ANY baby, he's doing well."  Please understand, we ADORE this MD & he is amazing with our kids.  I still feel the need to correct certain statements :)

Unfortunately, car problems forced us to cancel the audiology appointment for Wednesday.  With those problems now resolved, I will attempt to get him an appointment for this week or next.  Our PT, whom we had cancelled, miraculously appeared on our doorstep at her scheduled time.  I'm telling you, things really do work out just the way they are supposed to.  Josiah was tired - we had woken him early in anticipation of going to the morning appointment.  He was tired.  The session was shorter than usual.  It was a good session regardless.

Thursday, we took a much needed break.  We never made it to the afternoon playgroup because Josiah fell asleep.  It all worked out fine.  We were exhausted and this gave us a little extra time at home.

Friday was a nice day with Josiah (the big boys were at school).  The afternoon found us running errands, returning borrowed vehicles, picking up flower orders, and even a quick visit to the grandparents house. 

Saturday, our 3 yr old headed to his grandparents for a solo sleepover.  The 6 yr old gained much-needed solo time with Mom & Dad.

It's been a busy week.  A few more blinks and it will be over....

Another Busy Week

It's always hard to believe that it's Monday again.  It seems a struggle to get to Friday then, without warning, it's Monday.  Just like last week, we have another busy week planned.

This morning, I was up early making orange playdough.  It's a funny thing to be doing at 6:15 am, but I pooped out last night before making the 6th batch of playdough for my son's (the 3 yr old) school. 

Once I'm ready for the day, we will wake up sleeping sunshine (otherwise known as Josiah).  We have early intervention (EI) playgroup later this morning.  After the one hour group, we're off to do a couple of quick errands.  Then, Josiah has his favorite EI worker, K, coming to see him.

Tomorrow, Josiah has speech early in the a.m.  After he's nice and tired from speech, we'll load him into the van and take him to the MD's office for 18 month well visit.  Of course, they'll check the status of his ears at the same time.  Today is day 8 of the medicine, so hopefully his ears are better.

Wednesday morning, we'll be at the Audiology clinic for a hearing screening.  The last few at the Children's Hospital have been inconclusive, so we will return to the 'other' place - where we brought him at 1 month.  They had great luck with him :)   Sadly, we had to cancel PT this week, but she'll see him next week.

Thursday, our playgroup has been moved to the afternoon - works out well for us this week as C has an a.m. appt.

As of 5pm on Thursday, I'm not sure of our schedule....lots of possibilities....having made a final decision yet.  I do know that Friday is appointment-free, at least for Josiah.  Hmm.....what to do

Have a great week everyone :)

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!

A Great Clinic Visit

Yesterday, we were up early....4am.  I showered and dressed.  I woke Josiah at 5am for his first feeding.  At 6am, we were out the door.  We had to check in by 8:30am....we wanted to beat the traffic going in.  We were successful.  We arrived at 7:30, parked, had breakfast in the cafeteria, and checked in around 8:15am.  We were early for clinic; the other families hadn't arrived yet.  It was our lucky day....Dr. D. (head of the clinic) was ready to meet with us.

We like Dr. D.  We had met with her, at length, while i was still pregnant.  We saw her briefly after Josiah's open heart surgery.  It was nice to see her again.  Josiah was weighed (13lbs), measured (length 25inches, head circum. 42.5cm).  Josiah is tall, but underweight.....ugh!  Thankfully, he's healthy & strong - she would just like to see him gain a little more weight; she concurs with the pediatrician.  She suggested we talk to nutrition more about it. 

Meanwhile, I asked about Josiah's thyroid.  A lot of folks with Down Syndrome have hypothyroidism, but a few have hyperthyroidism (which would account for slow weight gain).  KF (lactation consultant and friend) and I had discussed this at length.  She told me about a test called Sensitive Thyroid-stimulating hormone test; I asked Dr. D about it.  She agreed to perform the blood test.  We were grateful. 

Dr. D. asked a lot of questions and examined Josiah.  Other than his weight, Dr. D voiced no concerns about Josiah.  She said, "I love that he makes such direct eye contact."  He was amazing and full of smiles!  I think she was quite smitten with him.  Who isn't???  :)  

Next, we met with the speech therapist.  We were encouraged to introduce Josiah to an array of flavors, textures, and the like.  A few suggestions involve dissolvable foods and using mesh-feeders.  We were all in agreement that Josiah wants to eat more.  She was anxious to get started.  While sitting on my lap, Josiah was introduced to a fruit bar & a dissolvable veggie puff.   I wish I could've gotten pics of Josiah's face while he experimented with his new treats.  It was hysterical.

Then we met with the physical therapist.  She was quickly taken by Josiah's personality.  Out came the playmat - he was happy to get out of that car seat for a spell.  Josiah quickly demonstrated his ability to roll over, lift and turn his head, prop himself up with his arms, and reach for toys.  He was also quick to strike up a conversation with him.  She said he was the 'most talkative' baby that had been in to see her :)  The session looked not unlike his sessions with D.  Josiah is doing well.  The goals are the same.

The nutritionist was our next stop.  She agreed that we can increase Josiah's 'real food' intake, first to twice per day, then quickly moving to three times per day.  She suggested giving Josiah 1/2 tsp of olive oil with each meal for the purpose of increasing calories.  She agrees that Josiah is on the low end of the weight scale.  He falls in the 10-20 percentile for weight (on the Down Syndrome chart). 

Dental was our next visit.  Josiah didn't mind this at all.  The dentist rubbed Josiah's gums and checked his mouth.  There are no signs of teeth yet.  Apparently, it is not uncommon to have NO teeth until age 1 (for children with DS). 

On to the laboratory for a blood test.  This was the worst part of the day - luckily the 'bad' only lasted for a few moments.  Josiah handled it like a trooper.  They drew blood for the purpose of testing his thyroid.  During the day, I was reminded that his newborn thyroid test came back normal; they assume this will too.

We left the hospital and walked one block away.  We headed to the third floor.  The elevator doors opened and we immediately noticed the large mural of sesame street/big bird on the wall.  It was a welcoming place.  This was the audiology clinic where Josiah would get his 6-month hearing check up.  After a short wait, we were called in.  Unfortunately, the test was aborted due to Josiah having fluid in both ears.  We will return in a month or so, to have his hearing checked again.  We'll follow up with the pediatrician.

At 2pm, we were headed back to the car.  We made the 90 minute drive home (in moderate traffic).  The Clinic was incredible!  It was efficiently run, professional, welcoming, and worth every minute of our time.  The next clinic appointment is scheduled for January.  We are so fortunate that our son has these supports....we live in a great place, at a great time <3

Easter time 2012

We packed up on Saturday morning, and headed out to meet our new friends.  We gathered at the family's home.  Carl & I met a lot of great folks - all whom have a child with DS.  We met a lot of great kids.  Lunch was fabulous!  The company was wonderful.  The Easter Egg Hunt in their beautiful back yard was a smashing success.  The Easter Bunny even stopped by for pictures, etc.  Jesse and James had a riot collecting their Easter eggs.  They played on the climbing structure, with various toys, enjoyed rides in a wagon, and hugged the Easter bunny.  After a few hours, we said good bye to our new friends and headed home.

Jesse and James were soon off, again, to their grandparents house.  There, they spent the remainder of the day cooking goodies for Sunday's get-together.  Carl and I spent most of our day cleaning and preparing for Sunday.

Sunday went smoothly.  Everyone came to our house.  We all had a nice day.  The older boys had fun with their Uncle T & Auntie A.  Josiah did what babies do....ate, slept, and enjoyed being cuddled :) 

On Monday, K returned to work with Josiah.  As usual, he enjoyed seeing his 'girlfriend.'  He happily worked with K for the duration.  Josiah is demonstrating more and more strength every day.  He turns his head from side-to-side, more readily now, while on his tummy.  His determination continues to be obvious.  He is such a little trooper.  After his session, it was James turn.

K met with James for his session.  C joined the team this week.  C will be working with James, weekly, on his speech.  K will continue to work with James, weekly, as well.  James loves the extra attention.  K is met with squeals of delight, each time.  I imagine C will start to experience a similar tradition soon :)

Tuesday had us all returning to the afternoon playgroup; the boys received their "Raising a Reader" book bags.  They were very excited.

James had his other playgroup this a.m.  Carl and I had planned on bringing James and Josiah to that.  Unfortunately, Josiah didn't cooperate with feeding this a.m.  So, at the last minute, Carl & James left for playgroup alone.  I stayed home with Josiah.  I'm still not sure why he was refusing to nurse.  He had nursed on one side earlier; the second side, he didn't want any part of.  I finally made a bottle which he quickly consumed.  He then fell fast asleep.  He slept for 4 hours.  When he awoke, all was fine again.  He has fed well for the rest of the day and evening.

Tomorrow, D comes to work with Josiah.  James will be enrolled in preschool, for next year.  Then, we are attending a family night at Jesse's school.  Friday, we have no plans.  I hope to keep it that way....it'll be a much appreciated break.