Friday, February 29, 2008

You HAVE to check out this website!!!

Humorous Pictures

It's Icanhascheezburger . com and it is sooo funny, you'll literally be crying!!!


Friday, February 22, 2008

More snow fun

Carter and Brenna want to try out the snow tube too!

"This is awesome! Wheeeeeeee!"
A little snowman built by Daddy and Drew
And here is the snow fort they made using a rubbermaid tote and shoveled snow from the driveway. Very clever boys!

A snow day!!!!

Gee-off had a day off from school today (yes, because of the whopping 1-2 inches of snow you see!). So we got this tube out of the garage for the first time all winter and let Drew try it out. It was a big hit for sure!

Who needs hills? :)

Sunday, February 17, 2008

Someone's reading my mind . . .

Welcome to Holland by: Emily Kingsley

I am often asked to describe the experience of raising a child with a 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 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 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 hs 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 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

I hope this helps some of you who are, like me, still wondering why, how, and all the other questions.

That about sums it up. Beautiful, well said.

Back to CHOP for Valentine's Day

Yes, we spent another holiday at The Children's Hospital of Philadelphia!!! (Our first visit was over the new year.)

It started on Wednesday, when we went to the pediatrician for our weekly blood pressure and weight check. Since starting the ACTH, I have had to check Emily's glucose levels in her urine. They had always been fine, until this past weekend when the test strip registered her glucose at the highest level on the chart! So, while at the pedi's office, they checked her sugar level with a heel prick. It was over 500 twice (it should be around 100!). The pediatrician called Emily's neurologist right away and they decided we should come in right then. (Thank you to Grandmom who was helping on Wednesday and watched Drew, Carter, and Brenna while I was gone.)

Off to CHOP we went. Unfortunately, we had to go through the ER and the wait was about an hour and a half before they took us to a room. We were in that ER room from about 4pm until 10 pm when they admitted us to an overnight room back in 7west (neurology). We actually got the room right next to our room from last visit. Unfortunately, again, our roommate was a little one with a serious cough and infection of some kind that made him vomit often. Apparently there is a rule, that as long as you are three feet away from the other patient, you can share the room. Although any doctors or nurses coming in had to wear masks and gowns and I had to walk by them everytime I left or entered the room for something. And we shared the same trash can and soiled linens bin, ugggh! I washed my hands a ton and am hoping we'll avoid coming down with anything. Last visit, Emily caught a cough - which went through the whole house of course!

But back to the reason for our visit. The neurologists had to confer with the endocrinologists about how best to handle the situation. They decided it is time to take Emily off of the ACTH. She has to be weaned slowly, which we were already starting to do, but are now doing faster. While she is weaning from the steroid, she will need insulin injections (there is no oral insulin) to keep her sugars stable.

Before we could leave I had to be taught how to use the glucometer to test her sugar levels several times a day, and then another "class" to learn how to give the insulin injections. So now, between the ACTH and the insulin, Emily could need up to 4 shots a day!

So far, she has not needed all of her insulin injections (there is a certain number below which we do not give it) and her levels have been mostly ok.

She seems happier already and is sleeping better (yeah!) - now going 4 hours or more at night instead of 2-3 hours only. She used to sleep from 9 -7 before the spasm ever started. Eventually we will sleep again, right?

Her treatments of both ACTH and insulin should be finished in about 2 weeks. The high blood sugar problems should go away once she is no longer taking the steroid. She responds well to the insulin when she needs it, so that is a good sign.

Emily is so brave and has been a real trooper through all of the poking and prodding. She had another IV at the hospital, and her poor little feet are all marked up with pin pricks on her toes and heels. She gets the ACTH in her thighs and the insulin in her arms and buttocks. Her face is all puffy from being on the steroid for almost 7 weeks now. She has gained almost 4 pounds in that time!

We love you Emily!!

Saturday, February 9, 2008

Swings and playthings

Emily is really loving this new swing we got from a friend. Thank you so much Krissy!! The cradle seat is perfect for her, and I think she finds it soothing. They all take alot of naps in their swings and it 's perfect so I don't have to hike up and down the stairs too much. It works for now anyway. Eventually I want them to nap in their cribs.

Carter and Brenna are really enjoying the Exersaucers. The yellow one was Drew's and the red one is new. They touch all of the toys and really grab them and try to chew them too. The most fun is to put them both in one side by side and they kind of play together. So cute!

Peas in a Pod

This is my new favorite picture!!! (L to R: Carter, Brenna, Emily)
I love how Carter and Brenna look like they're sharing a secret in this one!!

I have mentioned before that I really love anything peapod themed and I got a chance to capture the babies in their peapod outfits one more time before they get too big for them!

All 3 together

I still have a hard time getting pictures of all three babies together. This is probably because we're still on a staggered feeding schedule, so somebody is usually asleep.

But, I have been able to get some lately, now that they are having more awake/play time during the day.

Drew's turn

Showing off his Power Ranger moves (September)
Watching Baby Einstein with the girls (December)
Tuckered out after camp (he never sleeps anywhere but the car or his bed! August)

Drew has got to be one of the funniest kids I know!! It could be because his parents are hysterically funny themselves. (Come on - you think we're funny, don't you?) Or as Gee-off would say, sitcom funny - we could have our own show!

So I though I would share some of his latest "comments":

Gee-off poured his cereal one morning, and since it was the end of the bag, he filled it higher than we usually do.

Drew: "Dad! I don't want a mountain of Chex!"

Dad: "What? I thought you'd be excited about that."

Drew: "Oh." - pause - "Oh boy, a mountain of Chex!! - pause - "Is that better?"

Okay, it must be that triplet mommy brain. I can't think of any more right now. But he is so funny, I swear!!!

Neurology Appointment

We had been anxiously awaiting January 30th, so we could go back to CHOP for a new EEG and an appt with Emily's neurologist.

I took Emily to the EEG first. This was the first time (out of two previous EEGs) that I could see the screen and watch her brain waves during the test. So I couldn't really tell if it looked better or worse than before. The woman performing the EEG was typing comments during the test, and would click on a button when Emily moved. When she moved, the waves would spike, but otherwise they seemed pretty calm to me. As the test was almost finished, the technician said, "I don't know what her EEG looked like before, but today it looks like how yours or mine would look." Good news!

We then went to wait for the neurologist. They took us in fairly quickly which was nice, and Emily was so good. She slept most of the time we were there and we were there for about 5 hours total. I tried to give her a bottle, but I don't think she liked it cool, because I could only warm it up in the bathroom sink!

Anyway, the neurologist was pleased with her seizures decreasing after we started Topamax in addition to upping her ACTH dose. She got the EEG results and it was NORMAL!!!! The best news! The ACTH is doing what it is supposed to do - normalize the EEG - and the seizures might just be lagging behind a bit. But they said they would rather her EEG be normal and still have some minor spasms, than still have hypsarrythmia on the EEG. Yeah!!!!!

We had to get blood work after that, yuck! But again, Emily was a real trooper! She will continue on the ACTH for about another month, slowly weaning each week. We will continue to increase the Topamax at the same time.

So there was good news all around and we went home happy!!