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Goodbye 2010

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The closing of another year

bring no remorse & shed no tear

A hard year for some friends we’ve lost

in our hearts their lives embossed

A good year for the friends we’ve made;

for out of hospitals we’ve stayed

A high school grad resides with here

relaxing on his own “gap year”

Two four year olds, improving health,

learning, growth, affection wealth

The three year old makes gains as well

thriving, smiling, Momma’s  belle

In our hearts some pain and joy,

to our future: come peace buoy

As 2010 it’s hold release

Wish you joy, health, love & peace!

 

Wishing a safe, healthy and happy 2011 for you and your family!

OUR 12 days of Christmas

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On the first day of Christmas the Universe gave to me

A respiratory virus for three.

 

On the second day of Christmas the Universe gave to me

2 trachees sneezing

And a respiratory virus for three.

 

On the third day of Christmas the Universe gave to me

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the fourth day of Christmas the Universe gave to me

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the fifth day of Christmas the Universe gave to me

5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the sixth day of Christmas the Universe gave to me

6 dirty neb kits                 (before breakfast)

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the seventh day of Christmas the Universe gave to me

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the eighth day of Christmas the Universe gave to me

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the ninth day of Christmas the Universe gave to me

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the tenth day of Christmas the Universe gave to me

10 unreturned phone calls   (yes, all to doctors)

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the eleventh day of Christmas the Universe gave to me

11 missing supplies

10 unreturned phone calls

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

On the twelfth day of Christmas the Universe gave to me

12 hours oxygen

11 missing supplies

10 unreturned phone calls

9 rounds Chest PT

8 hours cleaning

7 days no nursing

6 dirty neb kits

… 5 albuterol nebs…

4 bags of laundry

3 wheezing crankies

2 trachees sneezing

And a respiratory virus for three.

 

 

 

 

 

BUT: at least we’re still at home!

 

I am the “broken toy”

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You might wonder what the heck I mean by my title… well, let me tell you about the Christmases of my childhood. Each Christmas, five kids would receive gifts under the tree and in stockings. If my parents bought different things for each of us, the item chosen for me would inevitably be the one with a piece missing- e.g., the DOLL from a “doll & cradle” set. Place markers or dice would be missing from games, I would get the “irregular” pair of footie pajamas with one arm that was significantly tighter than the other- and, NO, I was not grossly asymmetrical! On occasions when my parents would buy all of us the same item for Christmas, say cross country skis, my bindings were set for a pair of boots 3 sizes smaller than my feet. The year we got 3-speed bikes, my sisters rode theirs Christmas day while I was sick with the “stomach flu”- AGAIN! That was the winter of 1977-78, remember? The blizzard of ’77-’78 started dumping 1 foot of snow after another on us late in the evening of Christmas Day. My parents discovered in the spring that there was a piece missing to my bike’s derailer… My Mom worked so hard to try to change the karma of my gifts; she would wrap and tag, then on Christmas Eve, SWITCH tags to try to trick the karma police- inevitably her switch would find the “broken toy”.

So, this year, it is not surprising to find the “broken toy” moniker still fits. This year, when Santa ordered my Christmas present- seriously, he DOES, I have been GOOD- he struggled a great deal in trying to find the perfect item that I would love and appreciate. When he finally found “IT”, he had difficulty getting the forms on the website to work- it would only let him order it with ONE attachment with no personalization, then would allow multiple attachments but only ONE personalization- but who needs multiple things like that all labeled with EXACTLY the same name and birthdate? When the online ordering was finally corrected, Santa checked it twice- as he always does- then clicked “Complete order.” Not surprisingly, this first attempt was met with a failure of the internet at just about the submission point, so the entire order was lost in the ne’er world. 50th time was a charm and the item was finally ordered and the e-mail confirmation included exactly the right information in the right way.

Flash forward from that e-mail to the much anticipated arrival of the Santa gift today. The item came in the company’s signature red box with cream colored ribbon- as did the item Santa ordered for my older sister since he knew I had drawn her name in the “swap”. In order to determine which item would get the enclosed gift card addressed to her, a box had to be opened to determine which one held her gift and which one held the lavish and beautiful item that Santa felt I so richly deserve this year… There was a weight difference so the guess was correct on the first try and her gift was intact and BEAUTIFUL, tucked safely back in the wrapping for her to open on Christmas day during the forced family fun extravaganza that is planned. ANYWAY, after identifying the correct item for the gift tag, I reviewed the invoice for both items and noticed a slight error in the description of the gift Santa got for me. Well, knowing what I know about my karma and the likelihood that the error was, in fact, the way the company produced the item they delivered to my home, I had to review the contents of the other box to be sure that they had in fact sent the “broken toy” gift for me.

Upon reviewing the birthstone pendants and their personalization, sure enough, one of the twins’ name and birthdate was on the August pendant and my youngest’s name and birthdate was on one of the March pendants. Now, it’s possible that the names could get switched across items given the engraver’s lack of knowledge of my kids names associated to their birthdate… but wouldn’t you think it might feel “wrong” to an engraver to write “8-2-07” on an aquamarine pendant and then write “3-2-06” on a peridot one? Okay, I understand, you may not know that aquamarine is the birthstone for March and peridot is the birthstone for August, but wouldn’t you think that the guy who runs the engraver for Red Envelope might know? Especially after he had just completed another aquamarine pendant with the same birthdate on it as another of the pendants? I’m just sayin’… there may have been multiple clues that the wrong birthdate was being engraved and, perhaps the original order could have been consulted…? Nope. So now I have this beautiful mother’s pendant necklace, with 2 incorrectly engraved pendants- out of 4.

The good news in all of this is that Santa called Red Envelope immediately to notify them of the mistake. He spoke with them about how important it was for the engraving to be correct and on the correct birthstone pendant. He also told them that I had been so amazingly good this year that it would be a true disappointment if I had no gift from him under the tree on Christmas day… Well, wouldn’t you know, Red Envelope has just about the most amazing customer service department when it comes to errors made on their end. They told Santa that he was to keep that necklace and ALL of the pendants and that, since it was more than $75.00, they would replace the entire necklace and pendant set– crafting 4 new pendants and sending another silver chain to hang them on. Two necklaces for the price of one, sure the kid’s names are wrongly aligned, but you only see the engraving on the side of the pendant when you examine it closely. Could be the Nana is going to get a mighty nice 70th birthday gift this March… maybe I could get a jeweler to transfer the stones onto the correct pendant.

Yay, broken toy!

Rumson

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This morning, during that time of morning when you are nearly awake but not quite, I dreamt of visiting my grandparents’ home in New Jersey. When I realized where I was, I was standing in front of the bungalow with my kids in a wagon behind me. An older man was standing on the porch and talking to me and I told him that his home had been my Nana & Poppop’s when I was a child. He invited me in and I showed the kids the living room which was decorated for Christmas.

Part way into the living room, the scene changed. Suddenly the living room had my grandfather’s organ sitting on the south wall where it had always stood. The kitchen table was visible through the open kitchen door and upon it was the glass “spooner” that my Nana used to store her teaspoons. There were metal kid cups and bumpy amber glass ones for adults sitting on the table waiting for us.

I could hear a piano being played in the basement- meaning my Poppop was downstairs playing to entertain us- but we went out the back door so I could show the kids the tree in the center of the driveway, with its twisted trunk and lined bark. The driveway was still the same black gravel, with the narrow strip of yard on one side partially taken up by the laundry lines which were drying the day’s sheets. The yard was edged in a high, tight-planted hedgerow, a natural fence of sorts, high on the lawn-side next to the picnic table and low on the drive side, along the Rogers’ back lawn.

The rest of the dream was snippets of memories throughout the yard and house: a birthday party in the backyard, a circular swing hung from the twisted tree, a parade around the block dressed in clown costumes & house-dresses with bright red lipstick mouths. Indoors again was the same tour: Nana & her sisters and my Mom & aunt sitting at the table talking as they got dinner ready, Poppop sitting next to me and playing the organ, 5 glee-filled kids sitting on the stairs behind the door to upstairs WAITING to be let into the living room to see what had been brought by Santa.

I loved that house growing up. The neighborhood was flat and the tree-lined street was home to many families with children near our age. I remember playing some game where you throw an object into the air, calling out a name, and everyone but that person runs from the object. The person called catches the ball or bean bag, then yells “stop” and tries to throw it and hit one of the other players to make them “out”. Although I can’t remember the name of the game, I can remember the smell of the neighborhood, the squirrels running back and forth on the telephone wires that lined the road, and that we played that game in the street until long after dusk when we would transition to catching fireflies before being called in to sleep.

The strongest feelings I experienced while dreaming about Rumson were those of safety and security. It was a warm and comfortable place, filled with happy memories and people I have loved. I haven’t dreamt like that in such a long time. I wonder where I may travel another time I am blessed with sleep…

Reconstruction with Rib Graft, Part 4

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The events of the NG experiment weighed heavily on me the next day. When I spoke with the fellow, he agreed that starting slow “listening to the Momma” might have been a better idea. He told me we could try it again and run it slower or have her stick it out for 2 more days until she could try to pass a swallow the day after the stent was out. I opted to wait. She had already made it nearly a week, 2 more days would not be much longer.

By this time Trachboy had begun to feel better and was playing more actively in his crib. He was taking all fluids through his GTube or by mouth so he no longer had an IV. Sometimes I would place them together in Trachgirl’s crib so they could snuggle together or play with small toys. Fortunately we got through the next few days without incident. Trachgirl’s follow-up x-rays did not show progressive pneumonia from the aspiration and she handled the removal of the stent well.

Her swallow study the next day cleared her for nectar thick liquids and she happily took her first bottle in over a week while in my arms. Things were definitely looking up. The hospital scheduled us to leave the next day and visitors from the Dept. of Social Services & our Community Medical Alliance team spent part of the afternoon with the kids and I. It was during this visit that we learned there was a new baby and tried to wrap our head around what that might mean to us as a family.

When we headed home, Trachboy went in the car with a nurse and Nana while Trachgirl & I rode medical transport to ensure a safe trip. The joy and ear-to-ear smiles on our arrival back to the home playroom were priceless.

Within a couple days I returned to the hospital for Trachboy’s next follow-up bronk. The docs were thrilled that the repair had held. He did not require any dilation of the area in any follow-up bronk post-op.

Trachgirl was another story altogether. The ENT fellow had explained to me that the usual course post-op was that things look amazing on bronk #1, then bronk#2 is usually when they scratch their head and wonder why they put in all the effort. This was the case for Trachgirl whose airway had swollen back to the narrow pinhole she had had pre-op. With balloon dilation, they were able to open up her airway to a better size and she returned weekly for another month to continue the process of opening the subglottis. The appointments were then spread out to every two weeks and dilation continued until about 2.5 months later when they determined they had gotten the result they were going to get with her.

Several months later, my house became a home of sounds and giggles, words and some phrases. By just before their second birthday, both twins had found their voice and begun to use phrases with their signs to communicate. Since that time, communication has been mostly by voice- quieter than most young children their age, but quite a miraculous blessing considering their start.

My eldest

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It began in a way unplanned, unexpected. 17 years ago I became a ‘Mom’. His arrival was delayed- a preview of his reticence to join something new that has continued throughout. He protested his arrival, forcing the use of strong medications and other “encouragement”. When he arrived he surveyed the 15 medical personnel wondering “what the heck are they worried about”? After an 80 point heart rate drop that lasted his final 11 minutes of incubation, he literally looked around and relished the chaos he had been able to cause.

He grew as a wonder- bright, inquisitive and ever tall for his age. A quiet, only-child who excelled through elementary school. A teen who went through the usual lax response to the requirements of his high school coursework, rarely turning in neat and orderly homework, occasionally not turning it in at all…  Yet, in 3 weeks, he heads to N. University, seemingly ready, planning to work hard to get the co-op work he wants when that part of his program begins next spring.

What I want to tell you about him is that he is amazing, he is caring, he is the best work I have EVER done. I marvel at him and hope I can do nearly as well with my other 3 – when he isn’t currently deserving to be killed because, after all, he IS a teen-ager! When he is “on the amazing channel”, I see a caring young man who plays with 3 siblings who joined him here only a short time ago. Siblings who usurped his reign on the “only child” throne. A brother and 2 sisters, years his junior, whose lives are complicated, time-consuming, receive his love and attention daily. He accepts them as I do: full-fledged family members who share our hearts but not our biology. It is acceptance beyond his years, beyond what others and older relations are capable. He checks in when he’s away, reads stories and provides good night hugs. I see him and know I have done my job; soon this man-child will enter the world an adult who contributes to the world, caring for others, defending those less capable or fortunate. I love the view I have of his story unfolding.