A Whirlwind Of A Week

This was a busy week.

Last Sunday, Josiah took his first ride on a schooner boat.  He was joined by numerous family members.  It was a beautiful day.  However, between the sun hat and life jacket, Josiah was not impressed.  It was two nice hours in the fresh air regardless.  It was a good experience for him.

"Is this hat and jacket really necessary?"

On Monday, we brought Josiah to his playgroup.  This was one of the last groups before closing for the summer.  As usual, Josiah had a great time.  He stood nicely at the lego table.  He even crawled through a tunnel a couple of times (something he's struggled with previously).  

Notice how his left ankle turns in?  That's why he needs to be seen by orthopedics.

 

 

Monday afternoon, his EI child care worker came.  He loves K.  He had his usual good session.  Monday evening, the boys had their hair cut.  They all look a little older (and cooler for summer).

Here's Josiah playing peek-a-boo with his new haircut :)

"Peek a boo!"

Wednesday, he had his usual PT session with D.  He worked hard but made his discontent known.  He's made such strides recently but this week was full of complaints lol.  None-the-less, the continues to do well in weight bearing.  He continues to improve his skills in standing.  He'll be seen by orthopedics next week; we will find out whether or not a brace will be helpful.

As soon as D left, Josiah was changed and we were out the door.  Off to the audiology clinic.  We arrived a few minutes early and checked in.  Considering he was sound asleep in the van, his mood remained stellar.  We were called in; I provided them with updates (they hadn't seen him since the tender age of 6 weeks).  Josiah sat in a high chair for the duration of the evaluation.  The results were basically good:

Josiah can hear out of both ears.  
Hearing in the left is better than the right.  
The difference is likely caused by fluid in the ear (a typical problem for him).
Eliminating the fluid will likely cause symmetrical hearing (same in both ears).
Eliminating fluid will help with speech.
Josiah's nerves respond very well to sound, further suggesting fluid in the ear.
ENT is recommended for possible tube placement.
Developmentally, Josiah responded as they would expect any 21 month old to respond :)

It's all good news.  The tubes don't frighten me.  Our frame of reference is open heart surgery.  Therefore, I expect this to be a walk in the park, as they say.  By the close of day on Wednesday, we had an appointment scheduled with an ENT.  That will happen in September at Children's satellite location.

Friday morning, we were up and out early with the three boys.  It was time for the dentist.  For the big boys, a routine six month check up.  For Josiah, a first time visit.  They all did well.  Josiah has all of the correct teeth for a 21 month old child.  He wasn't thrilled and tried to bite a few times; he shed a few tears but did very well, overall.

Our plans for today were derailed.  We were going to an annual carnival, at a children's center.  However, with the heat index at 100+, we decided to have a stay-at-home day.  So, that's that.  That has been our week.

Tomorrow, we are getting together with family.  Monday, we go to Children's for Josiah's orthopedic appointment.  I'm anxious (not in a bad way) to hear their recommendations.

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 :)

Reflections in the Mirror

Did you know that 19th century farmers believed that a baby shouldn't look in a mirror until the age of 1???  If they did, "it meant death."  The reasoning was that young souls were only loosely connected to a body, therefore a soul could easily become 'stuck' in the mirror.  Well, I guess I wouldn't have made a good 19th century farmer lol.

Last week, we returned to our favorite playgroup.  It was the first one of this session (they were closed for a few weeks due to MCAS).  We arrived on a few minutes early.  Josiah was happy to be there.  He spent an hour crawling around, playing with toys, and interacting with anyone who would pay attention lol.  He was having so much fun.  In the corner of the room, there is a climbing structure.  On it a platform with a mirror.  I had yet to place Josiah on the structure.  I decided to give it a whirl this time.  I picked him up, sat him on the platform, and pointed to himself in the mirror.

The moments that followed were magical.  Here are a few of the great ones:

If playgroup had been endless, I could have sat there for hours just watching Josiah watch himself.  It was pure ecstasy.

This video captures the magic.

I just love moments like these.

Josiah - Each time you look in the mirror, may you see your full potential.  May you see the amazing person you are.  May you truly know how much you're loved <3

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!

End of a Long Week

I'm so glad this week is over.  I was glad to have our routine back....but the week was not ideal.

Jesse had a friend over on Tuesday and we all went to playgroup - it was great!  Unfortunately, after the friend left, Jesse didn't feel well.  He missed school for the rest of the week.  His symptoms consisted only of vomiting and diarrhea....once or twice daily; no other symptoms.  We've had to work around him being home, and not feeling well.  We called the pediatrician today but they suggested we continue to do what we have been doing (keeping him hydrated and feeding him the "brat" diet).  My parents are Godsends - they have taken Jesse and James for the night.

James, meanwhile, had his 2nd playgroup on Wednesday & had a blast!  He enjoyed his outing with Daddy :)

Yesterday, D & K (EI) came out to work with Josiah.  As usual, Josiah was out to impress.  He tolerated handling well (he does love being handled by his girlfriends - hahaha) and was cooperative with side-lying.  He laid on his belly for an extended time, lifting his head with great determination!  D & K are very pleased with his progress over the last couple of weeks.
Josiah's cereal eating continues to go well.  He enjoys his rice cereal once/daily.  I've called C to update her; I know she is ready to jump in, when needed, for and/all feeding issues.

Today, I was able to do some much-needed errands.  The older boys are at my parents house for the night.  Carl & I are going to be able to enjoy some 'alone' time (with Josiah, of course). 

Right now, the house is quiet.  The baby is sleeping.  Life is good.

Happy Friday, everyone!!!

Hello Rice Cereal and Crazy Appetite

April vacation is officially over.  Jesse is back to school.  Our EI friends are back.  Playgroups are running.  Things seem back to normal; apparently in my old age, structure is a good thing :)  I already feel less stir crazy and more focused.

I talked to KF this a.m.  She was clearly not disappointed in Josiah's weight gain.  Left to my own devices, I wasn't either.  However, I still get anxiety riddled over how the MD may react to a less than ideal weight gain.  We know that the MD would like to have seen twice the gain, but given everything - we think Josiah is doing great!  He is alert, oriented, responsive, engaging, and active.  He also grew three inches in the past two months.  The MD remarked that his height places him in the 15th percentile.  His weight places him on the "0" percentile.  When asked, "of the Down Syndrome chart?," the answer was no.  The computer only charts on the 'regular' chart. 

So, at 6 months, he's 11lbs 7.5oz.  He's 25.5inches tall.  I decided to check the Down Syndrome growth chart for boys.  Josiah's weight places him in the 10th percentile.  His height places him in the 50th percentile!  I think I'll start carrying this chart with me to the MD's office :)

On Thursday, the MD had given the go-ahead to start rice cereal.  I'll be honest....I've dragged my feet a little on this issue.  I had asked the question (can we start cereal?) then, of course, regretted having asked.  I even told KF that I was probably going to delay the endeavor.  Of course, then there are time when you ask yourself "why wait?"  Last night proved to be one of those nights.

After breastfeeding Josiah, and giving him two bottles, the child seems insatiable.  It was as if he decided to make up for all of the slow weight gain, in ONE night.  So, out came the rice cereal.  I made it thicker than usual (but not as "paste-like" as suggested by the MD).  Josiah did great!!!!  Given his extremely high palette, I wasn't sure how well he would do.  As is typical for Josiah, he made me wonder why I had questioned his ability......  I lost track of how much, in all, he consumed but it was a lot for one little boy.  Needless to say, when he fell asleep - he slept soundly all night.

I had to wake him this a.m. around 7am....the breastfeeding had gone too long - he needed to eat!!!!  And so he did.  Despite the fact that my milk supply was GREAT this a.m., he proved still hungry!  So, out came the rice cereal again!  He enjoyed his bowl of cereal & the remainder of a five ounce bottle.  After a few good burps, he was in his swing & dreaming about the things babies dream about :)

James has been a crazy little person this morning.  I've somehow managed to get a few things done.  In a while, we'll pack up the little ones, pick up Jesse (and his friend) from school, and we're off to playgroup #1.  Hopefully, I can squeeze a quick errand in after playgroup. 

Tomorrow is another playgroup for James.  Thursday, EI returns for Josiah.  That will end the appointments for the week, I think.

Meanwhile, my non-smoking venture has been a complete success.  It's been three weeks as of last night!  It's been amazingly easy :)

Everyday, I continue to be thankful for everything, and everyone, in my life <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.

Today's Follow-up Appt at Children's

We kept Jesse home from preschool today and brought all three kids to playgroup.  Miss C. was happy to see the three boys.  Jesse was happy to participate in playgroup (which he usually misses due to preschool).  James jumped right back in like he was there yesterday (he's missed a couple of weeks).  Josiah was awake and a bit cranky due to not being fed since 8am (the cut-off time in preparation for today's follow-up tests).  A good time was had by all.  We left playgroup at 10:30 and made our way to Children's Hospital.

We arrived at the appropriate floor.  Carl took the two older boys upstairs to a children's playroom.  Josiah and I headed into the room for testing.  It was about 12:20pm.  Josiah's vitals were good.  Once again, his weight had dropped from 4.14k to 3.87k.  They tell me this is normal post-op.  Josiah's also been taking Lasix twice/daily, which is likely contributing to the weight loss.  The MD came in and examined Josiah and said he sounded really good.  Then, he was given the sedation (a liquid taken orally, which apparently tastes quite swill).  About 15 minutes later, Josiah was asleep.  It was 1pm.  They began the sedated echo cardiogram.

During the next 70 minutes, I watched quietly.  It was hard to discern what I was looking at.  There were lots of blues and reds on the screen.  It was difficult for me to tell if things looked good, or not.  The room was quiet and dark.  Few whispers were spoken between the technician and nurse; otherwise, it was my own thoughts idling away the time.  During those times, it's easy to imagine all the things that could be wrong, the bad news you may receive, the fears are there.  All the while, you hope for the best.

At about 2:20, they paged Josiah's cardiologist to let him know the echo cardiogram had been completed.  While they waited for his arrival, they were able to complete the EKG (Josiah was still asleep, so it was quick and easy).  The cardiologist arrived moments later, listened to Josiah's heart, and reviewed the results of the echo cardiogram.  He said, "We couldn't have asked for a better outcome."  Josiah is doing great!!!  There are no holes in his heart.  Nothing is leaking.  The pressure in the right side of the heart is near normal.  The size of the heart has already decreased.  The surgery was a complete success.  Part of me kept waiting for the "but," but it never came :).  Josiah will have a simple follow-up office visit in 1 month (no sedation, no testing, just a simple office visit).  They then removed the one suture Josiah had (from where the chest tube had been placed).  The site looks great; it's healing nicely.

Once awake, Josiah nursed for a short time then fell back to sleep.  I went to find Carl and the boys.  We made the appt for next month's follow-up, went downstairs for Josiah's chest x-ray, then made our way to the cafeteria for a late lunch/early dinner.  By the time we left the hospital, it was approximately 5:30pm.  The cardiologist had already left a message on my cell phone stating Josiah's chest x-ray came back perfect.  Josiah no longer needs the Lasix.  We are delighted.

It was a quiet ride home as our three beautiful boys slept all the way home.  Carl and I are tired.  We are relieved.  We are looking forward to the next few days, at home, with our three healthy children.

Recently, on facebook, a friend suggested that my brother Scott (who died in Sept) was watching over Josiah.  I like that idea.  Scott had his faults, here on earth.  However, Scott was drawn to those in need.  He enjoyed helping the downtrodden, even when he was one of them.  My brother would have loved his newest nephew.  Perhaps God knew that Josiah was going to need an angel.  Maybe that's why he brought Scott Home....to be Josiah's Guardian Angel <3