Saturday, February 27, 2010

Making Valentines for friends at school

Meredith and Mom decorated cupcakes and made Valentine's to take to the V-day party at school. As you can see, Meredith was extremely interested in cupcake decorating - and only slightly more interested in decorating bubbles with glitter : )

My Valentine's gift from Dad - baby Uggs from Australia!

Saturday, February 20, 2010

24 Hour EEG Results

Tonight we heard back from our Neurologist with Meredith's EEG results. He emailed us "The EEG showed just some slowing, which is not unexpected in a child who has delays in her development. Slowing is indicative of some dysfunction in the brain, but is not associated with seizures or a tendency for seizures." So it's great that Meredith doesn't have a tendency toward seizures! This does confirm that there is some kind of dysfunction in the brain, but we still don't know what it is or why. We pretty much knew there was an issue in her brain because of her developmental delays, we just hadn't seen it confirmed in any actual medical test yet. He said there was no further testing recommended at this time.
It's so nice to have this test out of the way and to have heard these results today - the waiting is the hardest part. Meredith wasn't too phased by the news as she was very happy and smiley ALL day today despite a nasty cough - I can't wait for Spring! All in all, today was a very good day : )

Welcome to Holland

The first time I stumbled across this, it was posted by someone from the Delayed Darlings online group where I am a member. It really hit home and I thought it was beautiful. So I'd like to share it with you!

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Thursday, February 11, 2010

Our visit with the Orthopedic Surgeon

This morning Meredith and I headed into Waltham to see the Orthopedic Surgeon to talk about getting her a Supine Stander. It was a pretty quick appointment and in true Meredith fashion, she slept through the whole thing. He examined her body and hips and did a lot of bending and maneuvering limbs and said "well, if you are wondering if she has any orthopedic abnormalities - she has none!" More good news. He also checked her spine since low tone kids are at risk for scoliosis. Thanks to Meredith's hard work in tummy time boot camp, I am happy to report she has NO curvature of the spine - way to go Mer! He said to hold off on ankle braces for now but to get her a pair of sturdy shoes to wear in the stander - he actually recommended work boots. Anyone know where I can pick up some infant work boots?! Haha. He said she's doing a good job building back and trunk strength on her own and that a back brace would not benefit her since we want her muscles to continue to do the work to build her strength. He gave me a prescription for the stander and we made an appointment on March 5th to get her fitted for it. Insurance will cover 80% which is great. There is another little boy at daycare who also uses a stander so I got to see the one they have at KinderCare today. It is really cool, but GIANT. You can't even fit it in a car so his parents leave it there. I'm hoping we can get a bit more of a sleek model : ) I was told that his is quite old and that they are smaller now, hopefully that is the case!

Sunday, February 7, 2010

Happy Superbowl Sunday!

It’s Sunday, February 7th - Happy Superbowl Sunday! Go..... whatever teams are playing!
While Greg is away in Sydney, Australia for work, Meredith and I have kept busy this weekend. We visited good friends Karrie and Colleen in Marshfield where Meredith LOVED chirping along with the exotic bird. Saturday, we went to a beautiful memorial to celebrate the life of my Mom's good friend Judy who will be missed by so many. Meredith was a social butterfly smiling and laughing all day. Last week was packed with appointments at various "ologists." We saw our Developmental Pediatrician who we LOVE. She is amazing. She put us at peace with not having a diagnosis and encouraged us to seek out other local parents who have special needs children. She felt that finding other parents who can relate is really important.

Meredith had a 24 hour EEG on Monday into Tuesday. She has had 2 other EEG’s that both came back normal. Since we now have confirmation that she has had at least one seizure, the Neuro thought it was a good idea to do the 24 hour one. Sometimes kids can be having seizures at night and you wouldn’t even know it (a condition called ESES) and this directly impacts development. The good thing is it can be treated. We are not that hopeful that we will find any new developments with this test, but you never know. Meredith was a champ. She wasn’t happy about getting all the leads attached to her head, but once that was done, she did great. She and Dad picked out a special backpack that would house all her wires and a monitor. So she was very interested in her cheetah backpack that followed her around and we got to keep it after : ) We should hear results in a week or so.

This week we go back to see the Orthopedic surgeon to talk about getting Meredith a supine stander, ankle braces (AFO’s)to wear while in the stander, and possibly some kind of back brace/support. Stay tuned! Meredith's PT is very optimistic that we can get her standing. So we are all excited to see that!