Wednesday, July 28

Do you ever enjoy a picture intensive post?

This might be my most picture intensive post yet!  I'm sure you will enjoy seeing how these last couple of weeks have been spent.  Hannah has participated in a few fundraisers for both of her cheerleading teams.  We have washed cars and had a pancake feed!  Both were fun and she is doing an excellent job memorizing the cheers, chants and dance routines.  Go Hannah!  In the above picture she is chatting with Grandma Sue and her cousin Andrew.
Daddy brought all three boys to the pancake feed which was a testament to patience since I was flipping cakes.

We visited the dentist for our routine checkups.  Liam was so excitedto pick this fish out of the dentists' toychest.
Tommy has been full of joy and energy.  He is back on antibiotics and eye drops plus nebulizer, but his allergies are not slowing him down!

Beautiful things are blooming.  In more ways than just this.  Our family is changing, teenagers growing into young adults, twins getting closer to four years old, and mommy & daddy planning for the next 3-5 years of small exciting changes.  More to come on that soon as things become more clear for us. 

My sisters and mom and I enjoyed a girls FABULOUS day out.  We ate at a tapas bar and it was so delicious.  The sparkling wine was perfect for a summer day.

We enjoyed manicures and pedicures and hours of conversation and catching up.  Even though we live within 90 minutes of each other, our lives are just so full that we need dedicated days without our kids to visit and enjoy each other.  Ahhhh, pedicure.

I'm not sure why only one foot is in the picture, I was probably shoo-ing someone away with the other foot, but isn't that just so cute :)

That same day all of us girls went to do "fused glass" at the local pottery place.  My sister Debbie had seen this and we had a blast cutting glass, sprinkling glass and arranging rock like or tile like glass atop items.  This is the 'pre' look, and when we get the pieces back I'll post what their finished look is like.  This was so much fun. 

My sister Debbi the artist!

My sister Tami the artist!

Yes, I have been working.  But I really enjoy spending my summer away from work!

We have been loving the beach even after dinner we will go down and watch the water

Nate's poor broken arm kept him out of the water.

This is the momentous photo of Tommy holding his own ice cream cone. 
Which is a HUGE deal. 
Usually, the routine would be mommy gives Tommy cone, Tommy screams, Tommy throws cone on ground OR mommy quickly grabs cone from child throwing fit and holds cone to feed child... her arm falls asleep... her own cone melts.
But now..... mommy handed cone to said child and after he fed his chin for awhile.... wala... he now holds his own ice cream cone.   HUGE.  Okay, I now realize this photo means more to me than anyone else reading. 

I think he is still thinking of his ice cream cone here.

These two are remarkably close lately.  In looks and in all they do.  Driving tractor around the farm, sharing favorite foods, enjoying lots of cuddles.  Too cute. 

How was that for an intensive photo post?  Geez, I hope this uploads okay....

Tuesday, July 20

I don't have Down syndrome all the time

I saw this on a bulletin board that we belong to "Multiples with Down syndrome (one or more of the twins or triplets have Ds)".  I'm not sure how to give proper credit to the author, but to state that this is copied from the post of someone else and the author's name is listed here for his book (this is not my story, copied from someone else because it's wonderful).  Need to find the title of the book though, it sounds fantastic:

Dave Hingsburger is an advocate for those with disabilities and gives presentations on this topic fairly often:

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

Thursday, July 15

Never a dull moment

Yesterday afternoon Nate was longboarding from a friend's house in the York neighborhood to meet me at work and get a ride home.  My crazy 15 year old son wasn't wearing a helmet and gravity ultimately won during a small downhill battle.  He broke his right arm.  Both a fracture of the distall radius and a buckle fracture of his ulna.  His endurance of pain was amazing.  At the ER for four hours he never cried and was really hanging in there (although I would have totally understood crying).  So he is splinted and well medicated and resting.  Lots of dvds.  No swimming.  No bicycling.  No guitar playing.  No longboard (guess that was understood without writing it here). 

So, onto today.

Twins to the dentist (appt scheduled six months ago).  I cannot adequately describe the sheer decibel level involved with taking twin three year olds to the dentist.  Honestly.  The scrubbing of the teeth and the fluoride and sealant stuff was applied and then.... the pediatric dentist recommended orthodontics for pulling in Tommy's lower jaw from his 'bulldog' appearance.  Hmm.  The dentist said that at about six years old would be a good time to do it.  If you have older kids with Ds let me know if you have ever corrected this, I can't imagine doing something like that for Tommy.  I mentioned to her that I didn't want to do something 'cosmetic' because in my mind he is perfection!  But she seemed to think in the long run his jaw would be harmed if left alone. 

And then the day got worse.

I called Urology at Children's and explained our pediatrician wants them to look at Tommy's undescended testicles and his very boy part which is still fairly tucked up inside of other skin.  Since our pediatrician explained the risk of testicular cancer is higher if left up in that 'warmer' environment, I'm not sure we can decide not to do a surgical procedure where the testicles will be brought down.  Hmmm.  Help.  Anyone out there done this?  Sorry for too much information. 

I'm going to absolutely relax tonight and give myself some space.  Need DULL moments folks.  :)

Tuesday, July 13

The rose city

We had a great time at the family reunion in Oregon. 
We had the opportunity to stay at my aunt's home and spend more time with her and got to see cousins and their families. 
 Most important to me was a weekend to spend with my mom and my sisters though.  We love each other so much and wish we got to spend more time together so it's always a special time when we see each other.  Life is just so short there never seems to be enough time to visit with the people you love.

My aunt has a beautiful home and this was the great sandbox that Liam and my niece Madison loved.  We all had a blast at the playground next door too.
I love this picture of Tommy asleep after overdosing on cheetos!  And my sister Deb taught her daughter Madison how to do the monkey bars.  BIG accomplishment Maddie
My mom and my sisters!

My aunt and cousins organized a time and purchased beautiful flowers, so we could go and visit our grandparents and great aunts at the cemetary.  It was really special to me to think of how much my grandma would have enjoyed to know that we are all healthy and happy.  She had eight granddaughters and we held a sweet place in her heart.  Oh Grandma you were probably looking down at us with a big smile.
Cousin Andrew cleaning up!

Thursday, July 8

Twins at their "well" child visits

Today at ages 3 1/2 yrs old, we finally made it to our three year old well child checks.  As usual the twins were full of joy and energy and kept Colin, me, the doctor and two nurses hopping!  In general things are good and we are growing quickly and progressing a little slower than most.  But it's our "own" rate of progress!  And we just love them so much.

Here are the specifics of things mommy needs to do:
Liam needs to see the ENT and have his two year old pe tubes reevaluated, and he needs to see audiology at WWU to be reevaluated for mild (or maybe moderate) hearing loss.  This tank of a toddler is 40 pounds and 40 inches tall 95% for height and weight.  We build 'em big on the farm.

Tommy is our slight little fella at 33 pounds and 37 inches tall.  His appts need to be scheduled for:  urology review (oh joy another dept at Children's, Amy I need some advice/help on this, and if anyone else has down south experience), Thornberg for eyes again (delayed visual maturation), allergy doc for annual review this fall, pulmonology to check in about synagis again this year and possibly their thoughts on coming off of prevacid gracefully, labs sometime for thyroid and blood culture, cardiology is scheduled for september and so is f/u on clogged tear duct placements.  We also need to get back on the pulmicort nebulizer twice daily. grrr.  Tommy's height is only 10% on the Ds chart but he is slightly heavier and fell just under

The boys both got caught up on their vaccines which meant only one shot each!  Yippee (although they didn't think so).  And the boys gave the dr and nurses a big batch of homemade soft oatmeal cookies as a 'thank you' for assuring them such a healthy start  :)  We have the BEST dr and nursing team in the world.

Interesting that our dr recommended liquid vitamin daily (containing vit D) and fish oil liquid.  There are so many great studies out on both now, so this will be a new routine for us but we are going to start taking our vitamins.  Does everyone have their kids take daily vitamins?  I hadn't with my two oldest, so I wasn't sure.

Tommy Adventures