JOURNAL

Do you have a 'very Special Child'?
Then you might be interested in my
TAILS!!


I created TAILS on Suzy's SHIRTS.
It works for us ~ maybe it will work for you, too.

Remember when your kids were babies?
And they all wore ONESIES?
I loved onesies for all 3 of my babies -
the shirts stayed tucked into the pants,
their tummies stayed covered, and warm, and protected,
the onesie kept the shirt from "bunching all up in the back" when the baby was in a stroller or carseat,
there wasnt' a bunch of material gathered around their boobies when they were rolling on the floor,
they just looked neater.

Suzy is pretty much still like a baby - AT AGE 5 - and STiLL NEEDS ONESIES.
So, I created a way to make EVERY SHIRT SHE WEARS A ONESIE by sewing on a TAIL!!

I have done this for 2 years, to every shirt she has, and it's very easy!!!

For every shirt, you need one baby onesie. Cut the bottom 1/3 off the onesie, cut off the sides, and sew it onto the bottom of the shirt.

Click here for DETAILS and PICTURES.


http://www.babyjellybeans.com/web/do/site/photo?ID=723096





   

   
   

January 31, 2010

"To guarantee success, act as if it were impossible to fail."

 

I LOVE this.

This is my 2010 motto for little Miss Suzy.

January 25, 2010

Today is the 2 year anniversary of viral encephalitis.

Two years ago the baby we knew was taken from us and replaced with a child who has many special needs. We love her just the same; but she is so very different from the daughter we imagined we would be raising.

 

When this happened, we did not wonder, “Why?” and we didn’t ask, “Why us?”

We said, “Why NOT us?” 

We KNEW that bad things happen to good people.

We knew that life is risky, and we knew that ‘shit happens.’

 (Our life was fairly perfect before the encephalitis.  We felt so lucky. We used to wonder when something bad might happen…...)

 

But I DID ask   “Where is God?”  

“Why isn't He helping her?” “How could He let her struggle?”

“God, where are you?”

I found my answer over the past year.

God is in my mom – who has given 1,000’s of hours of love and devotion to Suzy.

God is in Gracie & Maggie – as they stepped back and allowed their sister to receive more time and attention than themselves.

God is in Karen Voogt – our PT who has faithfully come every week to work with Suzy and cheer her on.

God is in Jennifer Wolf – our early intervention coordinator who has guided us through this process and become a lifesaver and a friend.

God is in Jenny Biles – our nanny and family member and Suzy’s BFF.

He is in the stem cells – which removed the seizures from her brain.

He is in my sister, Toots - who has held my hand, and laughed and cried with me.

He is involved in all of the ‘uncanny coincidences’ that fall in our lap as we set up each new therapy.

He is in all of the good doctors, and praying people, and caring friends and family members. God didn’t want this to happen to Suzy, but He is helping us get through it.   

 

I’m very proud of the progress Suzy has made. However, I still get anxious when I think about the skills she isn’t even close to accomplishing.  Her progress has been so painfully small and slow.

 

My dear friend, Marcela, speaks of her son’s progress over at www.prayfornathan.org.

Nathan is the cutest boy in the world, and he happens to have a brain malformation. He progresses at about the same rate as Suzy.

Suzy and Nathan don’t reach milestones like ‘normal’ children.

They DO reach “stones”, but just not as fast and as complete as a “mile”.

The stones they reach are slower, and more deliberate, and smaller.

Marcela calls them “inchstones”.

I like that.

And, if you put 63,360 inches together you get a MILE.

 

The positive news is that Suzy IS progressing. And she IS healthy and very happy.

So, on this 2 year anniversary, I am filled with HOPE.

Hope about Suzy’s future and our family’s future.

Hopeful that Suzy WILL reach all of those wonderful miles that she is after.

Hope that one day she WILL color, and talk, and feed herself, and walk.

 

I believe we will get there.

I also believe it will take a whole lot of time.

But we will continue to enjoy every one of her inches,

And we will delight in watching those inches turn into miles.

 

(I added some cute, and random, photos under Photos-The Girls Jan. 2010)

 

Peace,

Whitney

 

January 20, 2010

A lovely story about me:

 

One day long, long ago there lived a women

that did NOT whine, bitch or nag.

(that would be ME.....)

But that was a long time ago,

And it was just that one day.

the end

New video January 15, 2010

I added a new, 25 second video.

Suzy loves to play with Gracie and Maggie after dinner.

Gracie will hold Suzy, and Suzy will "walk" to Maggie.

(She's taking some nice, reciprocal steps).

Anyway, last night I video taped them, and Suzy got VERY excited. The end of the little video shows  how much fun this turned into for me.

 It's called "VIDEO -You never know what's coming up".

Home Sweet Home January 12, 2010

Suzy and I are back from NY. The trip went well and Suzy did great with her therapy. She is an easy traveler. The hardest part about going to NY is just managing all the subways. I would LOVE to complain to the city department - the entire subway system is VERY unforgiving to the handicapped. Aren't there some kind of laws that the Americans With Disabilities have established in such a large city like NY??? It is very hard to find an elevator!!! They are BLOCKS apart. And once you are underground, you are really screwed with finding any elevators at all.

Being in NY, and participating in Medek Therapy again really got me thinking. Actually, I spent most of the week thinking, analyzing, contemplating, and evaluating. (I'm exhausted from all of my mental activity.)We were there for a week of therapy, and I watched Suzy spend the first 2 days crying and trying to get into the 'groove', and watched her body try to remember all that it had accomplished over Thanksgiving (our last time there.) And then I watched as she made great progress the last couple of days, and make some wonderful gains. I realized that being there for just a week every now and then is NOT going to accomplish what I want this therapy to do. And this makes me so sad, and so confused.

What do I do? I mean, really - what do I do?? It feels like it is time to answer that question, and get a REAL plan.  I am so torn.

I really believe that if Suzy was a daily patient of Jonathan's, in NY, we would make some amazing motor gains. .......The children at this clinic are all doing so well. They are walking when the doctors said they never would.

So now, I ask myself - at what cost? At what cost to my family life, and my pocketbook, and to Suzy's physical strength and her inner happiness, and at what cost to MY endurance? And should we move to NY? Do I up-root the girls just for Suzy?

What's fair?    I'm trying to find the balance. I'm trying to balance Suzy's quality of life, her motor skills, the family's happiness, and our financial 'situation'. And I need to figure out how much we should spend, both financially, physically, and emotionally, to get her moving.

First, I must ask - how important is it to get Suzy walking? or crawling? or even sitting and reaching? I'm sure there are other parents with special needs kiddos who would disagree with me; but I have decided that it IS important, and that those things WILL IMPROVE her QUALITY of life. That is why I am pushing SO HARD right now.

However, the MORE important question is: "What if I give, and I push, and I completely EXHAUST myself, Suzy  the family and our finances,.... and what if I do this for the next 2 years..... and then, what if after ALL of this we evaluate Suzy and find out that she made only a few small gains.??? Would it be worth it? There are just no promises in the world of brain recovery.  THIS is what's been weighing the heaviest on my heart. THIS is the question that I have prayed about the most.

I love Suzy just the way she is. She is perfect. She is amazing,and strong, and full of life, and a true spiritual gift from God. Right now, she is happy!! and healthy!! And isn't that what we want the most for all of our children? And if I push the hell out of her the next year, and I ruin that for her, I would have a hard time forgiving myself.

So, this is my situation, my problem, my issue that keeps me awake at night. I must figure out what's the most important, and then find out how to balance it all.

Right now, I have decided to run 'wide open' until the summer, and then I will re-evaluate our life. I have decided that Suzy is worth it. And, I realized that I will always question "what if" I had done more in the early years?? So,  I'm going to stock up on coffee, and attempt to give every ounce of extra time and attention I have to Gracie and Maggie.

And, I'm going to NY when I can spend 2 weeks there. I think Suzy needs the full 2 weeks to get the most out of the program.

Our THERAPY PLAN will be:

For the last 2 weeks of Feb. we will be in NY doing Medek.

Then, I'm home for 2 weeks.

Then, I return to NY for another 2 weeks in March.

Then, I return home for 1 week.

Then, We're off to North Carolina for 3 weeks to do HBOT therapy.

Then, home for 3 weeks.

Then, I return to NY for 2 weeks.

While at home, we will do our home Medek therapy program 2 times a day, continue with PT, OT, and ST, and aquatherapy. We have also started doing 'mouth exercises' to get her ready to start making some new sounds (so exciting!) And her speech therapist said she wants to try to get her to start doing some sign language (who would have ever thought???) She thinks Suzy is cognitive enough to understand sing language, but that her motor skills 'get in the way'. We are working on just 2 signs - "more" and "enough".

I pray that we will all be fine once we reach the other side of this marathon. I believe we will. I believe God will help carry us through.  And if Suzy gets only a teeny, weeny, tiny bit better - I will snuggle her up, and be grateful for who she is, and kiss her all over, and tell her how VERY VERY proud I am of her.

Peace,

Whitney