Saturday, December 31, 2011

1st Hospitalization

As it usually happens, all three boys have colds.  First one gets it, then the next, then the next.  Carl and I never seem to escape either.  So, for about a month, the two older boys have had runny noses and ultimately coughs.  Carl and I have had the same.  Wednesday night, Josiah developed a cough.  Luckily none of them have fevers.  We made the decision to have the two younger ones checked out at the docs.  We were most concerned with Josiah given his young age and the DS (as we've read DS kids are more prone to respiratory infection).

Friday morning, we packed up and headed to the pediatrician.  The concern for Josiah became quickly apparent.  Given the DS, undiagnosed heart murmur, labored breathing, and upcoming long-holiday weekend, the MD gave his recommendation: Go to Children's and have him checked out there.

We packed up the van (again) and headed to Boston.  We arrived at the e.r. and were seen quickly (as the MD had called ahead).  After a short examination, they decided to admit our little man.  We were brought to a floor relatively quickly.  They assessed, re-assessed, and came up with their plan: Monitor his breathing, be sure his lungs don't collapse, monitor vitals, provide nebulizer treatments, see what the morning brings.  Carl eventually left with the two older boys (they got an overnight at Grammie's :), and I stayed with Josiah.

We had a double-room.  Josiah's little room-mate was a cutie pie...all 15 lbs of him (compared to Josiah's 9 lbs).  He was in for a fever & being treated with anti-biotics.  It was a small world.  Josiah and his new friend were born on the same day, at the same hospital....both admitted to Children's, and placed in the same room.  The other Mom was a sweetheart.  It was nice to have another Mom to talk to during our stay.

We were lucky.  Josiah's vitals remained stable throughout the night.  He received three nebulizer treatments but required no additional supports.  He slept and ate well throughout the duration.  Carl arrived early this a.m. to wait with me.  At noon, we were told that Josiah was doing well and could go home.  Around 1pm, we received our discharge papers, packed up our little guy, and headed home.

Josiah's little friend got the same good news....they, too, were going home.

I'm so pleased that we'll be ringing in the New Year at home :)

We close out 2011 knowing we are blessed with three happy, strong, healthy little boys.

Christmas 2011

Last year, we had finished shopping & had all gifts wrapped by August.  This year, the extreme was true.  We were still shopping on 12/22, wrapped what was necessary for 12/24 (about 4 gifts), then stayed up until 6:30am wrapping everything else.  I'm going to try not to let that happen again next year :)

Christmas Eve we spent at my parents house, participating in a 130+ year tradition.  We gathered to read what we refer to as "the Christmas story," the same one that's been read in our family, on Xmas eve, since 1872.  This was the first Christmas Eve without my brother, Scott.

In an effort to keep Scott's memory alive (and positive), I devised a 'new tradition.'  My Dad read the story, then I pulled out a helium filled balloon.  On it, I had written these words (which I found on the net, by an unknown author):

"If tears could build a highway
and memories a lane,
I'd walk right up to Heaven
and bring you home again."

We passed the balloon around the room, and everyone added their own messages to Scott.  Once all messages had been written, we went out onto my parents back deck.  We held the string to the balloon, wished Scott a Merry Christmas, and let go....launching the balloon towards Heaven.  It was a touching moment.  I hope to continue that tradition hereafter.

As for the boys....they had a great time receiving stockings that Santa leaves at their grandparents house.  They exchanged gifts with those that wouldn't be present on Christmas Day.  Josiah is too young to be an active participant.  His two year old brother still likes boxes more than what is contained within.  The four year old just loves Christmas.  My husband and I have so much fun watching him.  I said to Carl, "Isn't there something magical about watching Christmas through the eyes of a child."

Christmas Day was spent at our house.  Santa came through for the four year old, bringing the very gifts he'd asked for.  How magical it is.  The two year old enjoyed mess-making & Josiah observed and slept lol.

On Monday, we spent the day at Nana's house.  The boys enjoyed the day with their Nana, Uncle, and Auntie.  The oldest (the little firefighter) was gifted a beautiful ride-on pedal firetruck!  Wow, did his eyes light up when he saw that.  He and his 2-yr old brother had a blast playing with that.  The younger boys got tons of great interactive toys....which they love :)

Carl & I are so blessed with the wonderful family we have <3

I look forward to all our future Christmas's.  It is such a great time of year.  I'm sorry that my brother Scott won't be here to enjoy them with us. 

May the balloon filled with words of love find its way to Heaven, every year.  Merry Christmas, Scott <3

Friday, December 23, 2011

MD visit and PT introduction

The last couple of weeks have been busy as we prepare for Christmas.  We completed our shopping tonight (we think).  Tomorrow is dedicated to baking desserts, then wrapping gifts.  Saturday is our annual Christmas Eve celebration with family, then xmas day :)  I said to Carl the other day, "Isn't there something magical about watching Christmas through the eyes of a child."  He agreed.

Josiah went to the MD on Tuesday for his official 2-month check up.  On our last appt (11/17), he weighed 7.10oz.  Tuesday, he weighed 9.14oz.  That's a 20oz weight gain in about 4 weeks.  The MD actually said he was "pleased" with the weight gain (we laughed previously as he's a bit of an alarmist, at times).  He's gaining sufficiently and he's primarily breastfed.  That's great news.

The MD did detect a heart murmur.  We're not really concerned about it.  While pregnant, they discovered that Josiah had a hole in his heart (a VSD).  Matter-of-fact, that was one of the first "red flags" to the DS.  A few weeks later, the hole had disappeared.  Just to be certain, we made an appt at the advanced fetal care center @ the Children's Hospital.  They spent about 2 hours examining Josiah's heart (in-utero).  They confirmed the absence of a hole.  They said that a tiny pinhole could still be possible, even though they couldn't see one.  The continued by saying that pinholes generally cause no problems and, more often than not, close over time.  The day Josiah was born, they detected a heart murmur.  However, 2 days later (upon discharge) the murmur was seemingly gone.  This was the first time the murmur could be heard again, since his birth.  We immediately connected with a cardiologist at Children's.  Josiah has an appt in January with cardiology.  We're already relieved due to the extensive examination he had while inutero.  We believe it can be no more than a pinhole.  It's just one more professional to be included on our growing team :)

On Wednesday, the EI PT came out to see Josiah.  She's confirmed he definitely has low tone, but primarily in the neck & trunk.  His arms and legs are good.  So, she will see him monthly (for now).  The EI worker will start seeing him weekly and, she too, will work to improve his muscle tone.  PT has assured us that she can increase to weekly visits, if they become warranted.  Josiah is a strong little boy....he'll get there :)

We are so blessed to have the team of professionals we have.  We love each and every one of them.  This is an amazing journey.  Next month we'll meet the cardiologist & schedule Josiah's new baby visit at the DS clinic.  In the meanwhile, xmas is in three days....a four year old, a two year old, and 10-week old Josiah - it doesn't get any better than this.

Happy Holidays to all!

Tuesday, December 13, 2011

2-months old

Has it really been 2 months since Josiah was born???  This is an amazing journey we are on.  I'm loving every minute of it.

Josiah had his first EI visit and he did very well.  He is a social little boy and likes the EI worker.  At this point, they simply monitor his movements, etc.  He's turning his head in both directions (favoring the right, slightly).  He tolerates laying on both sides.  He brings his hands up to his mouth.  Even on his side, he is able to bring his hands to mid-line and then to his mouth.  He is alert and enjoys looking around his environment.  He recognizes voices and searches for those he knows.  His eyes are big and bright :)  No delays evident, as of yet.  The EI professional has requested a PT and RN consult.  This is not due to any concerns, per se.  Rather, they want to assure that a whole team is in place in the event they are needed.

I enjoy facebook very much but am very selective with whom I'm friends with (I have to actually know you, for example lol).  Carl & I were recently introduced to a local group of parents.  They have a page on FB & we recently joined.  What an amazing group of people.  There are approximately 130 members.  They are all local and they are all raising a child with DS.  They have get-togethers once per month & special annual events.  We look forward to attending our first get-together & getting to know our new friends.

With the Holidays rapidly approaching, I have not yet made an appt for Josiah's "new baby" visit to Boston Children's DS clinic.  We'll likely schedule that for January.  His first clinic appt is scheduled for June.  At that time, he'll meet with their team of specialists.  They will monitor him approx. every 8 months until the age of 18.  What an amazing time & place we live in.  I thank God everyday that Josiah has such wonderful supports.  I know he will truly blossom into an incredible young man, just like his two brothers.

Josiah's older brothers are great.  James just turned two & cherishes every moment he is afforded to kiss his baby brother.  James will say, "Hi, baby!"  We have to keep reminding James that Josiah is not like his Elmo doll but rather a real baby.  James would love to fling him on the floor and play with him....hence the constant supervision :)  Jesse will be turning 5 in a few weeks.....I don't know where those 5 years went.  He's doing very well in preschool & adores his baby brother(s).  Jesse knows that Josiah has DS but it matters not.  Josiah is his brother - nothing more, nothing less.

Oh yeah, I almost forgot to mention the best thing.  Yesterday, Josiah turned 2 months old & he smiled at me.  I mean a real ear-to-ear smile.  My heart melted!  As my friend said, "he turned 2 months old but you got the best present."  She's absolutely right!

God knew what he was doing when he sent us Jesse, James, and Josiah.  They are wonderful children & we couldn't ask for more.  If I had to go back and do it all over again.....I wouldn't change a thing <3

Sunday, December 11, 2011

"...If People With Down Syndrome Ruled the World"

What would happen if people with DS ruled the world?

Affection, hugging and caring for others would make a big comeback.

All people would be encouraged to develop and use their gifts for helping others.

People would be refreshingly honest and genuine.

A stuffy high society would probably not do well in the world of Down syndrome.

People engaged in self talk would be considered thoughtful and creative. Self talk rooms would be reserved in offices and libraries to encourage this practice.

Order and Structure would rule
  • Schedules and calendars would be followed.
  • Trains & planes would run on time.
  • Lunch would be at 12:00. Dinner at 6:00.
  • Work time would be work time.
  • Vacation would be vacation.
  • People would be expected to keep their promises.
  • Last minute changes would be strongly discouraged (if not considered rude and offensive).
  • Places would be neat, clean, and organized (not just bedrooms, but cities, countries, the whole world).
  • Lost and founds would go out of business (even chaotic appearing rooms have their own sense of order).
  • The “grunge look” would be out, way out.
  • “Prep” (but not pretentious) would be very big.
In the world of Down Syndrome, there would be a great deal more tolerance for:
  • Repeating the same phrase or question
  • Use of the terms “fun” and “cleaning” in the same sentence
  • Closing doors or cabinets that are left ajar (even in someone else’s house)
  • Arranging things until they are “Just so.”
The words “hurry” and “fast” would be not be uttered in polite society. “Plenty of time” would take their place.
  • Our current mode of dealing with time, also known as the “Rat race” (or rushing around like our hair is on fire), would not survive.
  • Here and now would command a great deal more respect than it currently does.
  • Stopping to smell the roses would not be just a cliché.
  • Work would be revered, no matter what kind, from doing dishes to rocket science.
  • Speed would be far less important than doing the job right.
  • Work would be everyone’s right, not a privilege.
  • School and work sites would have picture, written, and verbal instructions to accommodate different learning styles.
  • Counselors would be able to use visual mediums to help solve problems.
What About News?
  • Weather would be the only essential news item
  • News would be more local (“A new McDonalds just opened up,” or “A dance tonight,” etc.). After all, what is more important than that?
What About Bad News?

If people with Down syndrome ran the world, would there be wars or murders? We don’t think so! There may be too many McDonalds but definitely not the wars or murders we have in our “civilized societies.”

What About “Behaviors”...
  • Anger would only be allowed in special sound proof rooms.
  • Trained negotiators would be available to everyone to help deal with any conflicts.
  • The word “non compliant” would not be used (except as a very rude comment). It would be replaced by “assertive,” as in “he or she is being assertive today.”
What About Self Expression?
  • Art and music appreciation would be BIG.
  • People would have time to work on paintings and other art projects.
  • Acting and theatrical arts would be encouraged for all.
  • You probably would not hear a great deal about exercise, but you may hear a phrase like, “Dancing tonight ... absolutely.”
  • The President’s commission on physical fitness would probably recommend dancing at least 3 times per week.
  • People would be encouraged to get married several times to have more weddings for more music and dancing.
  • Richard Simmons and John Travolta would be national heroes.
  • Elvis, The Beatles, and the Beach Boys would still be number 1 on the hit parade (Music of the 60’s, 70’s, and 80’s would be BIG)
  • Musicals would be very, very, very, big (such as “Grease,” and “The Sound of Music”)
  • John Travolta would be the biggest star.
  • Classic TV hits would be very BIG and take up at least half the TV schedules.
  • “I Love Lucy,” “Happy Days,” “The Three Stooges,” etc. would be very BIG.
  • Wrestling would be very Big.
  • “Life Goes On” would also be very Big and replayed regularly.
  • There would be fewer movies, but they would be replayed over and over.
  • Movie theaters would allow people to talk out loud to tell what happens next.
No Secret Agents
  • People would not hurt the feelings of others and they would also not lie or keep secrets.
  • Therefore there probably would be no secret service agents, spies, or terrorists.