The Harnisch Family

The Harnisch Family

Oct 2, 2010

Slowing things down just enough

It's kind of a blessing in disguise that along with Down Syndrome comes developmental delays.  I really do feel that DS slows things down just enough so that we are truly able to appreciate and savor each and every little moment and milestone reached.  Macy IS, without a fraction of doubt, going to learn how to do EVERYTHING that any kid learns to do...she just needs a little extra time, that's all.  We celebrate all of her achievements simply because she has to work a whole heck of a lot harder to get to those next steps.  Her low tone, is of course the major challenge as of late.  She will always have low tone, but there are some things we can do to strengthen all areas from her "head, shoulder's, knees & toes (knees & toes). 
Some, okay most parents, say things like "wow, the time sure does fly by, one day their learning to roll-over and before you know it, you are chasing them around the house trying to keep them out of trouble".  I can only hope and dream this to be the case for Little Miss Macy.  I am optimistic and will continue to help her put every foot forward in an effort to "get there" a little quicker and with a little more ease.  But at the end of the day...I do just sit back and appreciate this amazing little miracle for who she is.  She has forced me, a usually fiesty go-getter, to simply slow down and let things happen as them may.
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Kind of makes me think of the beautiful Doris Day song, you know the one, here are some lyrics:
When I was just a little girl
I asked my mother, what will I be
Will I be pretty, will I be rich
Here's what she said to me.


Que Sera, Sera,
Whatever will be, will be
The future's not ours, to see
Que Sera, Sera
What will be, will be.
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I actually do however know the answers to these specific questions.  Macy, you ARE and will always be pretty.  As our good friend Mary Poppins would say "You are practically perfect in every way".  And YES, you ARE and will always be RICH.  No, that that kind of rich!  Money does not make you rich.  Faith, family, happiness and unconditional love are life's true riches.  And oh boy baby girl, you've got all of this, more than you could EVER know!

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sooo...now I need to get back to the purpose of this post.  sorry for the rambling...
YOU SIT!!!  You have sat unassisted for about 10 seconds several times this week and for this we could not be more proud and more excited. 
Lucy even made note in her weekly "progress report" that you sat for 8 seconds for her...so I guess we could say that makes it "official"...you are a SITTER!!
Here Lucy (OT) shows you her report..."do you understand what this says Macy"?   congrats!  You get an "A" for the day  :-)
Oh and here's a cute little video of Macy trying very hard to sit up all on her own...nice hair right?

video

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In addition to lots of fun stuff, we've also had some doc, therapy & school stuff.  But I really do think that the lines between fun and "work" are pretty blurred these days. 
As you can see by these pics below we managed to make a "Feeding & Growth" clinic appointment at Children's hospital fun yesterday.  (Well, the not so fun part, as always, is rounding up the troops and getting out of the house, as you can imagine 3 year olds can be quite stubborn!).  But once we are in the car it is a victory and we are off to our destination.
 McKenzie waits for the "Kids Camp" to open...she was excited but disappointing at the same time.  She was sad to learn that this "camp" did not include bonfires, or cousin Anna's or Aunt Keri's.  What kind of "camp" is this??
A place at Children's Hospital where kiddos can go have fun while their siblings are receiving treatment or visiting their doctors...ummm...sweet.  You can bet I'm gonna take advantage of a service such as this.  Anything to rid myself of the 3 year old for a while...  hehe
 Waiting in the lobby.  Kenzie LOVED watching this pretty fountain.
 This is Austin, he is the kids camp director.  McKenzie quickly got over her disappointment and had a FUN TIME playing while me and Macy went to her appt! 
 McKenzie was surprisingly the only kid here today.  She had Austin all to herself!  The secret of this new kids camp must not be out yet.
And hence, The reason we were there.  Macy showing us how good she has been doing with the spoon.  We scheduled this appt. a month ago.  Back when she was really struggling.  But I really do feel that she turned a big corner a couple days ago and is well on her way to eating like a big kid  :-)
 Macy's like "Mom, let's get the heck outta here, I clearly do not need to be here".
 
In any case, I was still glad we went.  The OT and SLP put my mind at ease and shared with me some good tips and tricks for future successful feedings, etc.  
Picking McKenzie up from Kids Camp.  aww, she is having so much fun.  Way more fun than she would have had if she were with us  :-)
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On our way out of Children's, Macy's pediatrician's office called.  They thought it would be a good idea to set up an appointment with a pediatric neurologist.  So, it's set.  We will meet with Dr. Paul Larson on November 23rd to see what his thoughts are in regards to Macy's little eye rolling spells.  oh and our doc also suggested that we get a second opinion on the MRI results.  So we got a DVD copy of the MRI from Children's and will be taking it to Bergan next week for some further evaluation.  Why not, right? 
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Okay, well, enough of my babbling.  It's time we got out of the house.  Gonna be a fun day!  As soon as daddy get's home from the office...we're going to a B-Day party, followed by a roadtrip out to the family farm...HARVEST HAS BEGUN!!!  Then we are going to catch up with the Mallory's for a little camping this evening.  Sittin' by the bonfire sippin' some wine (uh, I mean hot cocoa).  My sister's and I are in MUCH need of some sister bonding.  Oh what a week all three of them have had.  Long awaited HUGS & therapuetic TEARS on the way.  I love my sister's and appreciate more than ever knowing they are and will always be there for me.  I will always be there for them too!!!

2 comments:

  1. I have to echo your words about slowing down. Somehow these little girls have taught us a lot more than we have taught them over the last 9 months.
    Thanks for letting out the secret of Kids Camp - hadn't heard about it yet, but will definitely be using their services!

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  2. I love how that fountain in the lobby looks like a double helix representing our extra special chromosomes!!! Too cool!

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