Sunday, July 31, 2011

Denver: The Drive

We finished our marathon cardiology appointment and hit the road.  Destination: Denver.  Five days and four nights of family time, interrupted only by the continuing education classes that brought us here in the first place.  Time to rest and relax.

I had been instructed earlier in the day by the Nurse Practitioner to sit where I could see Daniel while we were driving.  He would still be affected by the sedation, so an adult needed to be able to see him the entire time we drove to ensure that his head didn’t flop forward and cut off his airway.  What a comforting thought! 

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The drive itself was long, but enjoyable.  The kids were happily distracted by their Denver surprises we had carefully packed the night before: colored pencils, coloring books, activity books and new books to read.  The novelty of the activities lasted longer than I expected, and we only had to use the DVD player for one movie toward the end of the drive.

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The extra-early morning and lack of exciting scenery made for some good naps.  It’s always amazing to me how exhausting it is to drive for extended periods of time.  Who would have thought that sitting would be such hard work!

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Good music and “The Chronicles of Narnia” on MP3 helped to pass the time as well.  

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Of course there was a lot of construction throughout Wyoming.  We never had to stop because of it, but it did slow us down quite a bit.  It got to be pretty annoying getting stuck behind a line of semi trucks moving at a snail’s pace up hill after hill.  Every once in a while, we’d see a load of something interesting, like gigantic tires!

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Our favorite sites were the seas of windmills used to generate electricity.  Simply put, they were awe-inspiring.  Like giants guarding the landscape, they stood tall and still, while their blades moved effortlessly in the wind.  Amazing!

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We followed the path of a double rainbow for quite some time.  We enjoyed talking about what we would do with the money if we were to find the pot of gold at the end of one of them.

We pulled into the parking lot of our hotel at 11:11 p.m., exhausted and ready for bed.  Due to overbooking, the suite we had reserved was not available, so our reservation was split into 2 rooms.  I was not happy, but too exhausted to do anything about it.  So the boys went to one room, and the girls stayed in the other.  After 3 different knocks at our door from Jared (having forgotten something), and calming down two girls who were now very awake and very excited to be in a hotel room, we settled in to sleep, well after midnight.

Saturday, July 30, 2011

Pre-Surgery Cardiology Day

Tuesday morning dawned very early, after a late night packing for our vacation to Denver.  Because of the sedation that would be used for his echocardiogram, Daniel was not allowed to eat past 5:30 a.m.  The alarm rang at 4:30 a.m. and I dragged my sleepy body out of bed to warm a bottle.  After filling the bottle and placing it in the hot water to warm, I crawled back into bed, in hopes of catching a few more minutes of sleep.  No dice.  My mind was already hard at work, going over lists and re-playing the packing of our bags.  Recreating mental lists of the last few things to do before leaving the house for the week.

It was no small miracle that we pulled away on time.  Getting 5 kids ready to go – especially when it’s so early in the morning – is no small feat.  We’ve managed to make it almost a science.  Daniel, with his sweet smile and bright eyes, had no idea what he was in for and slept peacefully during the entire 90-minute drive to the hospital.  The rest of our brood happily enjoyed the first leg of our long day, because they knew what the ultimate destination would bring.

As we arrived at the hospital, Daniel and I headed into the appointment, while Jared and the kids parked the car.  They would be meeting a representative from Child Life to learn a little bit about what Daniel would be experiencing with his upcoming surgery.  Then they would have some time to spend at Toys*R*Us and at Grandma Larsen’s house.

The first item on the schedule for Daniel was a chest x-ray.  We waited, trying to be patient, for about 30 minutes before it was go time.  Finally we were called back to the x-ray room, and the pictures we taken in a matter of 5 minutes.  Easy peasy.  A one-person job.  I stood and watched, smiling to see my little guy squirming and giving the technician a run for her money.  Compare that to our experiences at the hospital at home.  It was a 3-person job (me being one of those people), and a tough one at that, to get the pictures they needed.  I don’t think they do too many chest x-rays on tiny little babies at our hospital.  Experience counts.

We then checked back in at the Cardiology Clinic, where we sat and waited some more.  Waiting rooms are really not the ideal place for a worried mom.  As we waited – trying to be patient some more – my mind conjured up images of the germs and who-knows-what-else were creeping and crawling all over everything and everyone.  I wanted to close us up in a little plastic bubble where we were safe from all the germs my mind knew were everywhere.

Again it was our turn, and we were escorted to a small examining room where all the stickers and wires were placed on Daniel for an EKG.  This is the part that has previously been the hardest to see.  It is a quick procedure, but there are so many stickers – 13, I think - that have to be pulled off.  I don’t know how they even get them all in place on such a tiny little guy.  It’s a good thing he doesn’t know what’s going on!

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The wires were attached, the reading taken and printed, and it was all over.

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Not a single tear was shed.  And that was no small miracle!  By now, the nurse practitioner was in the room, introducing herself and explaining what would be happening next.  We were taken into the ultrasound room and things started moving.  After a brief history, an IV was placed – on the first try, thankfully – and the NP began to administer the medications that would keep Daniel asleep and comfortable for the procedure.  Normally, they give a cocktail of 3 different medications.  Daniel was pretty sensitive to the drugs (just like his mom), so only 2 were given (Versed, which is like Valium, and another one to keep him from wiggling so much).  Daniel was also placed on oxygen because his oxygen saturation levels didn’t want to stay above 90%.  I was told this is a common occurrence when there is a major heart defect, and also when the patient has Down syndrome.  The echo took around 90 minutes, and by the time it was over, Daniel was already squirming and fussing.  I was finally able to hold him again and he immediately settled back into a restful sleep.

At this point, we were taken upstairs to the same-day surgery area where Daniel had to recover.  Because of the sedation, we had to ensure that he could eat and was OK before we could leave.  I fed him and we snuggled for about an hour, and we were given the OK to leave.

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If only it was time to be on our way!  We still had to go back downstairs to the Cardiology Clinic to meet with the doctor and go over the results.  Again we were asked to have a seat in the waiting area, where we waited and waited and waited…for 45 minutes!!  We were finally brought back to a room, and I was surprised to see the nurse dragging in the EKG machine.  She told me that she didn’t have Daniel’s name in the computer when she did the original EKG, so his printout had someone else’s name on it.  Wow.  How’s that for accuracy!  I’m glad she caught the error, but I don’t understand why she couldn’t just write his name on the paper.  So once again, those vicious stickers were placed all over Daniel’s chest, the wires attached, the reading taken and the results printed, this time with the correct information at the top.  And then I was given the opportunity to be the beast who removed those evil little stickers.  No thank you, ma’am!  You can be the bad guy, and I’ll be the rescuer who makes everything all better (or so I like to think).

The doctor came in and reviewed the results of the day with me.  The echo showed pretty much what they had seen previously – a very large hole between the atria (the top two chambers), and a small hole between the ventricles (the bottom two chambers).  The valve seems to be functioning pretty well, so the hope is that there won’t be much leakage after creating the two valves.  While the chambers of the heart are balanced, the heart muscle itself is enlarged and there is “fluffiness” in the lungs.  Daniel’s weight gain is still puttering along, but thankfully going in the right direction.  He was 10.6 pounds (about 50th percentile on the Down syndrome growth charts…not bad), and that’s without the fortifying we were supposed to do.  (Daniel doesn’t seem to tolerate formula, even in small amounts.  He just throws it all up.  Kinda’ counterproductive, so we gave that up.)  The doctor thought about increasing the Lasix dose, but then decided against that after I told him about Daniel’s on-and-off diarrhea since we re-started the medication last month.  The last thing we need at this point is dehydration!  The doctor submitted a request for surgery, so now we wait for a call from the surgery department to let us know an exact date.  Wait.  Wait.  Wait some more.  (I think I need to learn a little patience!)  Best guess is 4-6 weeks.

The most important thing now is to keep a certain someone HEALTHY.  So we may become hermits for the next little while.  Good thing we took our vacation when we did!

In the meantime, Daniel is smiling and learning how to roll.  He has started to take quite an interest in toys and other objects, and seems to be trying to grab them sometimes.  He sleeps through the night, and still a lot of the day, but he is having some longer stretches of awake time occasionally.  His head is still floppy (he seems to have lost some strength with the illness he had a few weeks ago), but getting stronger and more controlled every day.  He is just completely delightful and I am thankful for every minute I have to smell his milky breath and snuggle his squishy little body.

Stay tuned for a re-cap of our vacation to Denver…(I’m typing this as we drive through the nothingness that is Wyoming)

Monday, July 25, 2011

Style Down Syndrome

There was an article recently in GQ Magazine (not something I read myself, but heard about this through the Down syndrome community) that equated Boston’s fashion sense to “Style Down Syndrome, where a little extra ends up ruining everything.”  Yeah…pretty hurtful and insensitive.  I don’t understand what would possess someone to write something so hurtful!

I whole-heartedly give my support to Patti (and Dr. Skotko) for their response.  Please visit Patti’s blog (http://babynumber10.blogspot.com/2011/07/style-down-syndrome-bring-it.html) to see the response.  You won’t regret it, and you made even need a tissue!

Sunday, July 24, 2011

This Blog Needs a Name!

This here blog is in need of a new name.  I really like what we currently have, but we’re starting to get some traffic from people who are not close friends and family.  With all the weirdos in the world, I get worried about having our name out there for everyone to see.

So…if you have a suggestion, I’d love to hear it.  I’ll consider just about anything.

Friday, July 22, 2011

Support

While I was pregnant with Daniel, and we had learned about the likelihood that he would be born with Down syndrome, I discovered the Down syndrome board on BabyCenter.com.  We received so many tender mercies during our stay with grief (yes, I did say grief) and shock, and finding the Down syndrome board was definitely high on the list for me.  Here was a place where parents could freely share their joys and triumphs, struggles and sadness.  No sugar coating.  Raw emotions.  A safe zone.  Lots of questions and plenty of advice.  It was blatantly obvious to me that these parents adored their children.

One of the gems I discovered quickly was the importance of being involved in the local Down syndrome support group.  So many parents talked about the feeling of family – a place of acceptance and belonging – that is part of these groups.  “Get involved with your local group,” they would say to expectant moms.  I have to admit, I was a little skeptical at first.  How in the world could a bunch of strangers getting together to have a party be beneficial?  To our local group, I say, “Thank you for loving a skeptic!”  We have been received with open arms and open hearts.  We attended our first activity in May – a family swimming party.  The feeling of love was almost tangible.  I watched from the side of pool as I held Daniel, and the sea of emotions living inside me began to swell.  I realized again that this wasn’t going to be an easy journey.  (Then again, parenthood itself is inherently difficult.)  And I also knew that we could do this!

Last week our chapter held a luau, complete with yummy food, water fun, and entertainment by the Pauni family.  I think it would be an understatement if I said that our kids had a blast!

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Even Daniel enjoyed the festivities…for a minute or two while we tried to feed him!  (“We” meaning Grandma tried, and then I tried, and he showed us who’s really in charge!)

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Learning the Hula.  It’s all in the feet (or so I heard).

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Do the Haka (no shirts allowed)!  Look at those muscles!  (Josh wouldn’t participate…I think because they told the boys to take their shirts off!)

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Does a Down syndrome support group solve all the problems we face as parents raising a child with special needs?  Probably not.  What it does do – at least for us – is help families to know that this is do-able.  And life will still be enjoyable.  Oh, and just in case you didn’t know already, people with Down syndrome are pretty amazing!

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Thursday, July 21, 2011

Smile!

I finally won the battle!  Happiness is on the house today…enjoy!Daniel smile

Wednesday, July 20, 2011

Trisomy Tuesday (on Wednesday)

The day got away from me yesterday…again!  I realize I missed doing this post a couple of weeks ago, so I apologize.  Our summer has been anything but lazy, and that’s the best excuse I can come up with!  For today’s trisomy moment…

While any medical issues that occur in people with Down syndrome are the same as the general population, certain medical conditions are found more frequently in the Down syndrome population.  That is to say, there are no medical conditions that are unique to Down syndrome.  But certain conditions, like thyroid disorder, happen more frequently with Down syndrome.  As such, people with Down syndrome are screened more frequently for a list of medical conditions.

People with Down syndrome are people first.  I know, that sounds like a no-brainer.  But the fact of the matter is, they are individual people – not a diagnosis – who are, in most respects, just like people with 46 chromosomes.  They have feelings, they learn, they love.  Sometimes I have to remind myself that Daniel has Down syndrome because he is just like my other kids (just in baby form)!

People with Down syndrome are doing more than ever before.    Rather than being institutionalized (as was once the case in the U.S., and still is in other parts of the world), people with Down syndrome are going to school with their peers, graduating from high school, working, making meaningful contributions to society, and even going to college!  Laws and acceptance have come a long way.

Monday, July 18, 2011

Three Months Old

DSC_0323 I can’t believe we are already 3 months into this journey!  Daniel is such a light in our family, and we just love him to pieces.  He gets more love and attention than anyone, hands down.  It can’t be helped.  He’s just too scrumptious to leave alone.

I don’t know how much he weighs right now, but I’m pretty sure he’s still not over 10 pounds.  Darn Lasix!  Darn heart!  He’s eating though, and most of the time it’s a good amount.  So I have to just let this one go, since no amount of worrying on my part seems to change anything.

The last little illness he had seems to have set him back a bit.  He doesn’t have the strength for holding his head up as much.  Just too tiring for him, which breaks my heart.  He’s going to be a new person after this surgery.

He is in the process of figuring out how to roll over, though.  He can swing a leg over and get almost completely onto his tummy from his back.

This little man blesses us often with the cutest, wide-mouthed, heart-melting smiles.  If you’ve seen one, then you know exactly what I’m talking about.  As soon as the camera comes out, though, his interest turns to the fun new toy, and the smiles are gone.  Humph!!  I shall triumph eventually!

 

 

 

 

We are seeing a lot of this

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And even some of this

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Yes, he has a voice, and he has decided to use it more.  That’s a good thing.  This momma was missing the crying.  I know, I’m crazy.  If he were a crier, I’d probably wish he wasn’t, right?!?  Honestly, I love newborn cries, and I’ve really missed them with Daniel.  It almost brings a tear to my eye to see his face scrunch up and his eyes turn to tiny slits when he’s upset.  And it makes my heart swell with love for my precious little man.

Monday, July 11, 2011

What Have I Accomplished Today?

I have spent the *WHOLE* day (minus 60 minutes for swimming lessons and 30 minutes for lunch) working on 2 tasks.

Task 1: Find a hotel for our upcoming stay in Denver.  Slow.  Slow.  Slow.  Call a hotel…check rates…do they have a University Rate (Jared has some classes for work).  Make a reservation.  Cancel a reservation.  Read reviews.  Change my mind.  Wash and repeat.

And the verdict…still trying to find something that is *just right* and wondering if there is such a thing!  {Call me picky, but I just don’t like dumpy hotels!}

Task 2: Worry about clothing for our family pictures, which will happen next week.  Everything is purchased and laid out, and I almost altered Emily’s shirt.  And then I decided it was not quite the right shade of orange.  Too bright.  Too peachy.  Whatever.  Check online.  Check each store, 10 times AT LEAST, because maybe there will be something new since I looked an hour ago.  Maybe?!?  Or am I just trying to force inspiration?  Hmmm…  Go through drawers.  Throw hands up in frustration.  Think, think, think some more.

The verdict…let’s try a white shirt with a scarf!  Maybe, just maybe…

So, what have I accomplished today?  Not a whole lot!! (But I have kept a baby fed and a supply of milk in the fridge!)

And all I *really* wanted to do today was play with my new toy some more.

Tomorrow…there’s always tomorrow…

Sunday, July 10, 2011

Just Playin’ Around…

Don’t mind me – I’m just playing around with my new toy!!

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Friday, July 8, 2011

July 4th Celebrations

I have very fond memories of the 4th of July.  The big parade in Provo holds a special place in my heart.  Nothing was better than watching the floats roll by in all their sparkly, mysterious glory.  It baffled me that I could see them moving, but I could not see any wheels.  Occasionally I could see the driver’s head, and I wondered where the rest of him was hiding!  As much as the sound of the sirens terrified me, I loved watching the fire engines and police cars cruise by.  And the motorcycle police rallies left me entranced as I watched the motorcycles circling around, weaving in and out and somehow not crashing.  The parade was full of beautiful floats, old cars, marching bands and horse riders.  Nothing like the advertisement-filled, candy-throwing parades of today.  If the parades today were more like the ones I remember as a kid, I would be anxious to take my own children.

The fireworks show at BYU was the other big 4th of July highlight for me as a kid.  I loved going early in the day, staking out a spot with blankets, playing with my brothers, aunts, uncles, cousins, grandparents…whoever was there with us.  Every year I was slightly disappointed that we’d have to sit a little farther away than the previous year because of safety concerns.  But the disappointment faded quickly as the fireworks began to light up the sky.  How I loved watching the brilliant colors and hearing the deep booms, crackling popcorn sounds, and high-pitched whistling!

While we don’t go to the “parade” very often, watching the fireworks is a tradition that we have continued in our own little family.  And our kids seem to look forward to it almost as much as Christmas.  This year we took our bug spray, treats, blankets and chairs to a church near the hospital.

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This spot has served us well for the last several years.  It comes complete with shade, grass, close parking (for a quick get-away at the end), plenty of parking lot to run in, and trees for climbing.SDC17432

Really, does it get any better than this?

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The kids missed the company of cousins this year, but did get to have fun with Stacie and Phil.  Phil was an especially good sport, running races and wrestling with the kids, and answering their incessant questions.  “What do YOUR pajamas look like?” {asked by Caleb} was our favorite.

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The Air Force refueling jet that flies by is a definite hit (though the fighter jets that buzz the stadium in Provo are way cooler.  Hey – we take what we can get).

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And there seems to be something completely magical about glow sticks…especially when you can capture the baby in them and turn him into a glow-in-the-dark prisoner!

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{Disclaimer: None of the children involved in this incident were harmed in any way during the events leading up to, during, or following this photo.  Adult supervision was present the entire time.  Just sayin’…}

I am proud to be an American, and thankful to live in a country where I am truly free, where my children can grow up and receive an education, and where dreams and hopes can be more than just that.

Thursday, July 7, 2011

Advancement & Fun

Josh has been in Cub Scouts for roughly 11 months.  And it ONLY took him 10 of those months to complete the requirements to earn his Wolf!  If someone in this family would have been more on top of things {I’m not naming names!} he would have been done AT LEAST 6 months ago.  Someone was nice enough to snap this photo with our camera.  We look like quite the stair steps!

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I love Cub Scouts for a few reasons, among them being the funny “cheers” they use to congratulate each other on accomplishments.  Every time they give a “round of applause” or a “high five” or whatever silly thing they can come up with, I smile and think how fun and carefree it is to be a kid.

I love Cub Scouts because it gives Josh a very productive outlet for all his boy-ness.  I love that it encourages creativity, respect, and team work.  I love that he gets to work one-on-one with me or Jared.

Josh and Jared worked together to make a boat for the Raingutter Regatta.  This was a new event to me.  I had only ever experienced the Pinewood Derby before.

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As you can see, the name of his boat is, “The tacos!  More tacos! Taco Shell 200000!”  I think that taco shell sitting on the counter was very inspiring for him!

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He had a great time propelling his little blue boat down the length of the raingutters, and he even won the “Spiciest Boat” award.

Rachel and Caleb provided the entertainment for the evening, as they went from finger-dipping to full-blown swimming in the little pool they had for boats to wait in.  Never a dull moment!