Friends

It is no surprise to those of us who know Reagan that she has NO end of friends both sporting 46 and 47 chromosomes.  For those of you who do not know her in person here are a few pics (by NO means representative of her broad array of friends) of her playing with friends over the past year.

  As a lover of all things music one of her favorite activities is playing duets with friends (and sometimes with mommy while she is attempting to accompany a student lol).

  Also involved in the love of music...dance!

Snacks...especially those involving Chocolate are to be shared among friends for extra sweetness.

Yeah, that pesky little extra chromosome that is causing some mystery symptoms that have us running to the lab a few more times than normal this week has the flip side advantage of raking in the love between her and...well...pretty much everybody  she meets. :)

Ripple Effect

Two years ago, the first year that I blogged for the month of October and I wrote a post about a comment a little student of mine made when she learned about Down syndrome for the first time.  She requested one of the bows we make every year (still available upon request)

 and she made a point last October or telling me she remembered to wear it for Reagan.  Today she showed up to her piano lesson wearing it and told me how she told everybody at her church (her daddy is pastor) about Down syndrome awareness and not to forget to wear blue and yellow along with pink this month.  I think I may need to provide her with a few more bows if she is going out into the world for Reagan! :)  This is an 11 year old girl!  And again the little children lead the way.

Goodnight Long Day

ummm.  yeah.  Today did not go according to plan.  We did manage to draw part one of two labs and Little Miss totally rocked it....seriously, not a flinch, cry, whimper...nothing but a tiny "ouch" with the poke for 6...count them...6 of 10 vials of blood needed.  It was actually rather hysterical.

 If I told you that it took four people to draw 6 vials of blood from a 4 year old with special needs you would automatically assume that at least 2 or 3 of them were needed to hold her down.

 Yeah, not so much.  I loosely held her in my lap while taking pictures to (unnecessarily) distract her while one tech held her wrist to keep the vein popped, one held the needle perfectly still (so as not to blow the one tiny vein she found...can I just give a big shout out to techs who actually listen when you say you child is a hard stick!) and one switched out the vials all while Reagan watched with great curiosity.

 At least there was no trauma for her...especially since we need to go back again on Wednesday.  Suffice it to say that after an early school pick up and then a long process at the lab followed by homework etc I did not get any laundry (who else has a never ending laundry cycle?  please tell me I am not alone here!) done, nor did I get much else of use in terms of the house accomplished.  BUT at the end of the day, by kids had a good day and got their work done...an are alive, and that is all that mattered.  And now they are tucked in to bed.  Reagan with her favorite birthday presents from Grammy and Papa (wish I had a picture of her face..."ohhh" with her hands on her cheeks) when I turned on the lights of the picture, and Mama and Daddy (do you want Anna "no" do you want Elsa "no" who do you want "Anna and Elsa"...yeah they have to come as a pair).

Good night, sweet dreams and yeah for Daddy being off tomorrow!  I know I have alluded to some medical stuff, and I promise details soon.  Suffice it to say, she is perfectly fine and there is always a little more stuff going on at this time of year with all her annual checks and when everything comes back I will give a full medical update....oh and by the way, NO HEART CHECKUP THIS YEAR!

That we may have Complete Joy

God is Good....All the Time.  And he wants us to have complete joy.  A great sermon (see Olin you got me thinking) this morning combined with some thoughts that have been churning around in my head for a while courtesy of idiots (sorry but if the shoe fits) like Richard Dawkins and the general hedonistic nature of our society juxtaposed (sorry, that old english major is rearing its head here lol) with sweet stories about new babies blessed with extra chromosomes, the love showered on Reagan everywhere she goes and moments like those experienced today remind me that the idea of happiness and joy is not defined by possessions or ease or chromosome count.  It is something that is spending a lot of time rolling around in my heart and brain and I will probably write more on it later, but for now...the moments experienced today....Complete Joy!  She joyfully signed the songs at church this morning...wish I had a picture...Complete Joy.

Lunch with friends (and how many little girls can we fit in three square feet?) .....Complete Joy!

We all gathered around as a church family and proved that we really are just that as we witnessed an awe inspiring moment of a friend baptizing a man who turned around and baptized his wife...Complete Joy.  Growing up big and brave....Complete Joy!

P.S.  Sorry for no post yesterday...it was Saturday which means nothing exciting happens and I do too much work...and I make no promises that it won't happen again ;)

The Awesomeness of Teachers

I just want to give huge shout out to the amazing teachers in my girls lives.  There are good teachers who educate well and help your child learn.  Then there are great teachers who have the inborn ability to really and truly understand how each child learns and go out of their way to nurture that.  We are so blessed that all of our girls teachers are that breed.

We had Reagan's annual IEP meeting recently and I am almost frightened by how easy it was...there was no fight,  her teacher and therapists all understood  how she learns and suggested fantastic goals for her.  I get daily reports on what she is accomplishing and how to help her with things that she struggles with.  Cadence's teacher lets us bring in the therapy dogs for a reading program that encourages the kids to read.

 Clarisse's teacher recognizes her innate desire to teach and has her helping the kindergartners and helpings with small tasks in the classroom.  The principle of the big girls school provided them the opportunity to tell their friends that they are celebrating Down syndrome awareness month for their sister.  WE ARE SO BLESSED!

The cute, the arrgg and the...(Post 2 of 31)

Ahhh I had all the best intentions to get a post up in the morning while Reagan was at school.  A post full of Reagan goodness and cheer.  Ok so that hasn't really changed, because (really, truly) seldom does a day pass that is not full of Reagan goodness and cheer, which makes a day like today fall in the category of good rather than bad all things considered.  Just keeping it real here, today did NOT go according to plan.  Reagan was going to go to school and have speech therapy and fun with her friends and I was going to run errands and put up a cute post about how much Reagan loves Disneyland...

ok here is some Reagan loving Disneyland (who doesn't...told you she was alike!).

  I ended up spending way too much time in the doctor's office and the X-ray office, (no she is not injured) and the lab searching for answers as to why she is having....lets put it delicately so as not to kill your appetite for the fantastic cookies I baked with my best-in-the-world-been-waiting-years-to-try-this-cocoa cookies (hey when you have a day like this chocolate is the only answer!)

 (who wants desert?)...mysterious bowel issues, and getting possibilities, but no answers.  Now don't get me wrong I LOVE our Pediatrician and he had some seriously good insight and ordered some tests that will hopefully point us in the right direction, but sitting at the Imagery Center for a half hour only to find out you have to go elsewhere because your insurance doesn't cover there only to go upstairs to the lab only to find out that you can't draw 10 vials of blood from a 24 lb bundle of cuteness so you'll have to come back a second time...oh just kidding we don't know which tests to run now and which later and the doctor's office is closed so you'll have to come back two more times and as a bonus you get to...oh never mind that one will ruin your appetite for those cookies....does not make for feeling you have spent a day productively.  But that is how it is with kids.  Can I have a show of hands again...who has dealt with this kind of insanity at one point or another, bonus chromosome or no?  Yeah, that is motherhood for you, right?  But not every mama gets a smile like this through it all.  I tell you this kid never misses a chance show her fun side.

 So we waited in a bunch of waiting rooms today...more chances to charm the socks off a few more people....and here I am, yet again, putting up a post at 11:30.  Here's to a less crazy (and more chocolate filled) tomorrow.

We're Ba-ack (31 for 21 Post 1)

Hellloo October.  Apparently all you Reagan fans have been waiting for this.  I LOVE you guys!  I wasn't really sure if I was going to bother with posting this year since I don't know if I have anything impactful (is that a word?) to say, or maybe I am just too scattered to sit down and put my thoughts on paper screen in a way that actually means anything to anyone...yeah that is it.  But when Reagan's birthday rolled around and so many facebook friends mentioned they were excited for their chance to see Reagan for a whole month, how could I be responsible for depriving the world of some seriously fantastic Reaganess (yes that IS a word).  And wow have we moved into a whole new world of Reagan in the last year.  She has changed from toddler to...well...kinda like every other four year old you know right?

 Show of hands....whose kid has done this?  So this time around she has LOTS of personality to show off...she talks, she sings,  she loves Frozen (of course she does, she is a four year old girl right).  She is all about showing the world how she is both Alike and Different.