Friday, April 29, 2011

Blepharitis and Down Syndrome: Well, that's a new one.

Charlie does not wear glasses, but we see an opthamologist regularly because, well, that is just a given when you have Down Syndrome.


We can't take him to just any opthamologist at this pointWe need a doctor with mad kids-who-won't-cooperate skillz.  At this point Charlie could identify pictures on a chart, but even if he feels like cooperating (which is unpredictable), there is just no guarantee that he would (1) identify them correctly (leaving us to wonder if he sees them or not), or (2) launch into his little comedy routine where he identifies everything as "grapes!" followed by hilarious laughter.  Very cute, but not helpful.

Lucky for us Dr. Paul rolls into town every few months to do a clinic for children with special opthamology needs.  Our appointment was on Saturday.  Charlie did great.

The kids who come to the clinic first go back for their initial check-in with the nurse, who ambushes them with a squirt bottle of the pupil dilator stuff (that would be the pharmaceutical name), then they are sent back out to play in the waiting room until their turn with the doctor.  There were two other little boys waiting at the same time as us, both about Charlie's age.  Thank goodness there were plenty of cars.  They were cute, rubbing their little eyes, each one of them talking with interest about getting their eyes squirted.  "Did you get your eyes squirted?"  "Yeah, that nurse squirted me, too!"  "Are you going to get squirted?"


So, Charlie's appointment went great.  He continues to be mildly far-sighted, and we are told this is plenty normal and we need not go back for another two years.  Nice!

As the doctor peered into Charlie's eyes with his flashlight and mirrors, he begins to say, "I need to tell you that children with Down Syndrome are extremely prone to Blepharitis, in fact Charlie has it right now.  You can see how his eyelids are a bit red and puffy..."

Blepharitis.  That's a new one, I think. 


He goes on to tell me Blepharitis is not a big deal.  He likens it to having dandruff.  It is a bacterial infection in the eyelid/eyelash area.  It causes the eye to be itchy and the eyelid to be reddish and puffy.  The treatment?

Treatment is ongoing eyelid/lash hygiene.  "Get yourself some tear free shampoo (got it!) and shampoo Charlie's eyelashes and eyebrows every time you wash his hair.  (say whaaa?!)  He will need to learn to do this, and it will be ongoing hygiene for the rest of his life."


So, this is a pretty easy treatment.  I mean, of all the possible health issues on the health issue list for Down Syndrome, this one is cake.  But washing Charlie's hair...  It's dreadful.  He is so sensitive to water on his head, face, and neck.  I could probably count on one hand the number of times we have had a tears and scream free hair-washing.   Shampooing his eyes?  Oh goodie.


Since last Saturday we have only had the guts to try it once.  It wasn't as bad as we thought.  (Well, Ray was the one who did it, so for me, it wasn't bad at all!)  So, that is a good start.  And hey, maybe having ones eyes shampooed will make washing ones hair seem less tragic, right?  Plus, I can't imagine that it feels great to have chronically itchy, puffy, irritated eyes.  I thought they were just "like that".  Who knew?


Sweet boy.

Friday, April 22, 2011

Look who's sittin' nice and tall...

I suppose if a guy decides to start smiling by 3 weeks...

babbling by 6 weeks...

sprouting teeth by 15 weeks...

then you might as well learn to sit by 20 weeks.


This little fella is in a hurry to be big.

Wednesday, April 20, 2011

Make that TWO in Diapers

Need I say more?


Calvin decided last week that it was time.  Okay, a little hot chocolate bribery helped.




I haven't changed a diaper on him in over a week.  Not one accident.  He takes himself to the potty.  He manages his own clothing.


He says things to me like "Oh! My body is telling me to go potty!"  Thank you Nama Gale.  Thank you.  Thank you.  Thank you.



One down.  Two to go.

Monday, April 18, 2011

Up the Fun

Guess who is 5 months old?

How did that happen?


Raymond and I comment to each other all the time that 5 months is so little time, yet we feel like we've had this little guy with us always.  He's an easy going guy like that.

Mellow Miles.  Mild Miles.  Mr. Smiles.  Miley-Miles.


He is just what we needed.  Extra work and more demands aside, Miles has helped us to take ourselves less seriously these last few months.  I dare to think life--even potty training--would be more difficult without him.

There are many occasions where, I will admit, my default would be to go into robo-supermom "git' er' done" mode with my bigger boys.  Thankfully the unduly-stern mama face just can't stick around too long with a pudgy, squealing, drooly little lump of squeezy-love attached to my hip.

He ups the fun.  And things still get accomplished somehow.


I wake every morning to this little face staring straight back into mine.

Thursday, April 14, 2011

Cutest Damn Baby: When your baby looks different.

Pardon the language.  There is a story that goes with it.  My friend Katie and I know the story as the "Cutest Damn Baby Story".

Charlie was just a little baby.  Maybe 4 or 5 months old.  He and I were at the Co-op where we bumped into Katie and her sweet little Anna.  We were in the produce section chatting when a scruffy fisherman-looking type man in his 60's (are fishermen scruffy?) walked past, and noticed our darling babies each tucked in their slings.  He stopped briefly to engage the babies in some sweet little baby-talk banter.  Later I past the same man in the bulk food section, where he again took notice of Charlie.  He doubled back a third time to take another look.  Upon that last time he past by I overhear him mutter, "That is the cutest damn baby I ever saw."



Down Syndrome is one of the special needs that comes with a "look".  When we, and other family members and friends, were first letting the Down Syndrome diagnosis sink in (which, lets face it, takes a while sometimes) we heard the sentiment "He really does not 'look' Down Syndrome at all."  Should it matter?  I don't know.  But one of the aspects of raising a baby with Down Syndrome is coping with a child that looks different.

When Charlie was a baby, I would debate about whether I should blurt out to people that he had Down Syndrome, or if they would already know from the way he looks, or if it was important information for the world to know, or if it was better people not know if they could not tell, or, or, or.



Call me shallow, but I'm not alone.  When you never imagined your life would be inexplicably linked with a child who has special needs--never really considered it at all--and then all of a sudden you are not only processing what this means, but everybody around you can tell...  well, it is something a parent needs to wade their way through.  And fast, 'cause everyone knows.

So how did we feel about it?  I did feel sensitive about Charlie's looks at times.  His tiny little nose.  It seemed impossible to me to get a photo of him from an angle that did not make it look like you could see straight up into his sinuses.  His short little arms and legs and big tummy made it hard to dress him.  I worried people would think he was overweight.  His tongue stuck out a lot.  And when he got his hearing aids, well, it was one more thing to look at.  To make him stick out.



But also, we loved the way he looked.  We were quite vain about it at times!  He really was a darling baby.  All those Down Syndrome features seemed to make him seem even more baby-cute.  His button nose.  Cupid lips.  Round chubby cheeks, and roles of sweetness all over his little body.  His head was perfectly round.   People at church would practically take a number to get a Charlie-cuddle.  Ladies would gush over him in line at the super market.  Weathered fisherman-types would go out of their way to look upon him.

Cutest damn baby, indeed.

More about Babies with Down Syndrome can be found here.

Monday, April 11, 2011

Life doesn't have to be big to be good.

We had a visit from old and dear friends this weekend.  Ray's best friend Jason, and his wife Rebbecca and beautiful daughter Alexandra.  After a stop over at Dick Taylor Craft Chocolate Factory, we met up at Redwood Park to enjoy the morning together.





I love the way the joyful shouts of children sound on a breezy day.



The ever popular "digger".


Fun.  Fresh air.  Bodies moving.



Not to be outdone by the "tall slide".


Life doesn't have to be big to be good.  Does it. 



There's a first time for everything.  I think Miles is contemplating a nap here.

Saturday, April 9, 2011

So Much Sweetness

I am so blessed to have a baby like Miles at this crazy time in my life.




There is so much sweetness woven through every part of this baby boy.  I knew there would be.  I feel as if I've known him forever.  I feel as if he's known me.


Friday, April 8, 2011

Nama Gale's "Pee from Your Brain" Potty Training Day Camp

The potty training saga continues.

First.  Both boys have made major strides since my last update.  They are both able to be dry all day...  as long as mom and dad remember to take them often enough.  Even Charlie is doing really great.  He is holding it longer and longer between going, and when we sit him on the potty he goes right away, then stands up and says, "I did it!"  We are getting there.

Earlier this week, though, we had a wonderful opportunity to work on some potty independence with my friend and pastor, Gale, who has potty trained a number of children over the years.  Gale's grandson (who calls her "Nama") is the same age as Calvin, and is also working on potty training, so the two boys got together for a potty training day camp time.

Potty? Check.  Extra clothes? Check.  Baby? Check.  Three-year-old with water bottle full of juice in hand? Check.  Now we are ready for a day of Potty Training with Grandma Gale.

Our goal for Calvin for the day was to help him become more aware of the signals his body gives so that he can recognize when he needs to go potty, and then take care of the matter himself.

Gale started with an anatomy lesson, showing the boys the digestive system, how food gets broken down, how it comes out.  The kidneys, the bladder, how the bladder gets filled up and then sends a signal to our brain that tells us we need to go pee.  Calvin soaked up the information.




Then it was time to play.  And wait for someone to have to go potty.  "Don't forget to listen to your body, boys."




The idea with Gale's method is that accidents are learning opportunities.  When the boys had an accident, they were responsible to take off their wet stuff, get new clothes, and practice running to the potty so the next time they would know what to do.

Calvin did a great job listening to his body the first time he had to go.  He ran as fast as he could to the potty, his eyebrows raised with urgency.  Got there just in time.  He was over the moon with pride for himself.  It seemed like a light came on for him.


"I gotta go!"


"I can do it!  I listened to my body, and I did it!"

Calvin got a treat for his effort.  He also got to make a phone call to the person of his choice to share his exciting news.  Calvin chose to call his Grandpa.  The phone call went like this:


Calvin:  Grandpa I went pee!


Grandpa:  Wow, you sound so excited!


Calvin:  I did it!  I went pee!  It came from my brain!


Thus:  Nama Gale's "Pee from Your Brain" Potty Training Day Camp.


"Hey, I think I've got something here."


The next time he had to go, he had an accident.  So he practiced several times running from the spot where he had his accident to his potty.  He did a great job.

The experience was great for Calvin.  He had some really great success and was encouraged in his efforts to be "big".  At home, the practice has not been perfect.  I was hoping to not revert back to pull-ups at all, but that has not happened entirely--mostly, but not completely.  He is actually dry nearly all day, sometimes with an accident during nap time.  It's the poop.  That is not happening in the potty with any kind of consistency, and when I have the baby needing baby things, or Charlie needing Charlie care, then I'll be honest, I'd rather clean poop quickly and easily from a pull-up than have to deal with the mess it makes inside of underpants.  We are getting there, though.  We really are!  I just might survive this.


Don't forget to vote today.

Wednesday, April 6, 2011

To Reach Out More

I feel incredibly honored that I have friends, both in real life and on the internet, who consider our little blog worth reading along.  Thank you so much.  Thanks for your support, and indeed scratching my back as a writer and a mom that our story should interest you.  My main goal for this blog have always been:

To chronicle the childhood of my children.

To show friends, family, and others that a life with the challenge and joy of Down Syndrome is just that:  a challenge and a joy, and a lot of "normal" too.  Charlie is doing great.  And so are Miles and Calvin.  We roll with it.  Most of the time.

And last, to encourage parents who are facing a Down Syndrome diagnosis, or who are struggling in some other way with raising a child with Down Syndrome.

I love that word: encourage.  "En" means "to make" or "to put in".  Let me put courage into you with our experience.  Our story.

So this is where I am going to ask for a favor from those who have enjoyed Charlie's Up To...

It turns out, parents raising children who have Down Syndrome do find this blog.  Quite often in fact.  In the past couple days people have landed on my little blogspot when searching the following:

"raising a Down Syndrome Baby"

"Down Syndrome"

"Concerns for babies with Down Syndrome"

"5 year old diagnosed with down Syndrome has low muscle tone"

"baby diagnosed with Down Syndrome after birth"

"Down Syndrome health concerns"

When I see this information on my little site visitor thingy (that would be a technical term), I just want to reach through the screen and offer a big hug.  I want to hold that newborn with Down Syndrome.  Oh how I miss that feeling.  I am in the unique position of saying, "I know how you feel.  And look.  It will be alright.  You can do this."  It gives me renewed passion to keep writing about my family in this public venue.  It encourages me to get this little blog out there.

Will you help me get it out there a little more?

All you have to do to help me reach out a little more on the net is click the button below and vote for Charlie's Up To.  Just look for the picture that I included at the top of this post (I'm kinda towards the bottom right now).  You can do it daily, so I will keep the button on the side bar and on the bottom of my blog posts until the voting period is done.  Thank you so much for helping me to do this.  It means an awful lot.

Monday, April 4, 2011

Raising a Baby with Down Syndrome: Developement and Pride

If you would like to see all the posts in the "Raising a Baby with Down Syndrome: What it's Like" series, click on the Down Syndrome Resources page beneath the site banner for the full list.

I'm on raising my third baby right now, and I can tell you there is a difference in how a parent feels about developmental milestones between a baby who does not have Down Syndrome and a baby who does.

Laying on his side helped him bring his hands to mid-line, an important first skill.

The love and admiration is the same for all my children, but the way I see their accomplishments is different.  For Miles and Calvin, growth and development seem to flow from their little bodies and minds.  As they move from one stage to the next I look on with amazement.  It is so miraculous to me the way our brains unlock the world for us, and we leap forward in our person-hood.  Love, shelter, nutrition, consistency, protection.  We need all these things to grow, to change, to mature, to, you know, learn how to roll over.  Miles is so intent on handling toys, manipulating them in his hands, bringing them to his mouth.  I did not teach him these things.  All I did was give him the toy.

Charlie's development, especially as a baby, was not automatic.  It was lengthy and slow, and required assistance.  He did not learn to hold toys so effortlessly.  We had to prop his arms up with towels so they would not flop back to the floor.  We had to choose toys that were light and easy to grasp.  When he was learning to crawl I had to physically teach his body the movement of hand, knee, hand, knee.  So, you want to know how I felt when he finally did grasp a toy, bring it to mid-line, then transfer it to the other hand?  I was over the moon with pride.

No mother was ever prouder.

Play is therapy.  Charlie works on pushing up with his arms.

Development was slow.  At times we would begin to wonder if he would ever learn a certain skill.  And then he would.  In fact, it was an ongoing pattern:  work and work and work and work, then begin to wonder if it was possible, only for him to catch-on in the face of our doubt.  And then, pride.  Pride and excitement.

He can do it!  We didn't know if he would, and then he did!


Charlie learned to sit around 8 months, crawl at 14 months, and walk at 28 months.

And the pride was not just our own.  It was also a community pride as our extended family, our church, our friends clapped and cheered and marveled at the shear possibility wrapped up in this little boy Charlie.  This is one of my favorite parts about raising a child with Down Syndrome.  Possibility continually reveals itself, and to be honest, while we did not relinquish the idea of what was possible for Charlie after we found out he had Down Syndrome, we did kind of hold it in abeyance as we proceeded forward, wanting so badly to know what life was going to be like but feeling so unsure.

It's like finding something that was lost.  It's like a receiving a gift that we longed for.

Charlie played on yoga mats because the non-skid surface helped him move around easier.

In fact, all the possibility and purpose wrapped up in our little boy Charlie is the main reason for which I started this blog.  Other parents need to see it.  To believe in it like we are able to now, having walked the path of a Down Syndrome babyhood.

Well, just look at the pictures.  Read our story.  It is not always easy, but it is so exciting.  Possibility is written all over this little boy and his story.
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