Welcome to Holland...

I wanted to share a poem that I found probably 9 months ago, I have always kept it close to heart, but wanted to share it with those of you I haven't. Today I have not been able to shake Audrey's speech therapy session from yesterday. The therapist is concerned that she may have verbal apraxia. The whole idea is much more scary to me then medical GI issues that I can help with a pill or food that I can pretend doesn't exist for her. I suppose truely they all make our lives a little more complicated, but this scares me a bit more.. It's her brain..it's the wiring..that's scary. Quite possibly it is hits me hard because yet again I feel like I juggle her issues, keeping them all in the air all so gracefully (at least I strive to..sometimes better than others) and then BAM...you drop something. I knew her language was falling further and further behind. She's now making vowel sounds with intonation. No words other than mom, dad, and yes. She seems to try to say something, just to be unable to repeat it. Imitation is very hard for her. She does seem to understand well what we say and can pick a picture of a card from 2 when we name it. She follows directions and can pick a picture of a food off the refridgerator when she wants something. Signs are going nowhere with her, but we keep trying. I am most definitely in Holland. Trying to learn to love it.

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WELCOME TO HOLLAND
By Emily Perl 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 the unique experience to understand it, to imagine how it would feel. It’s like this:

When you are going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo’s “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 flight attendant comes and says, “Welcome to Holland.” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plans. 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 guidebooks. 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 awhile and you catch your breath, you look around and you begin to notice that Holland has windmills, 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 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.

Halloween 2008

Oct. 26

Oct. 26.

I decided I wanted a few pics with the girls and the pumpkins. OMG...what a struggle. I am wondering how my friends always get such great pictures of their kids. Neither were cooperating and it was very stressful. So, you get what you get :( Here is a slide show.

YAH PA!

Dragging butt today. Yah for PSU and Yah for the Phillies!

18 months!

How could my baby girl be 18 months today??? It really does just blow my mind. It seems like a yesterday that happened 10 year ago. So, so much has happened in her short life and I could have never dreamed all the lessons I have learned through parenting her. She is a strong and determined little woman. Sometimes it works to her favor, sometimes not so much :) But it will serve her well later in life. I just can't imagine my life without her. It is so fun to watch her little personality grow. Although she says little she shows she understands a lot. She definitely gets her point across! Her new thing is to fake a cry when she hears someone else (her sister) cry. She covers her eyes and says, "aaaa...." It is so funny. So today at the pediatrician she's 22lbs. Thank god for neocate. She's got croup and is now on an antibiotic for an ear infection and steriod for the strider sound she is making. Let's hope tonight isn't painful for all of us!! Happy Happy Birthday Girlie!

Lover Boy

Keely's new hamster. His name started as "LOVE" cause he rubbed his nose on her hand on the way home from the petstore. So she says he loves her. Some how it evolved to "Lover Boy". With help from her dad, no doubt. He is the most scared hamster I have ever seen. Here are some pics of him hiding in his tube to eat. Our other two hamsters could have cared less if we came around!

10/20/08 A long day.

A long day was had yesterday as Audrey and I headed out across the state for Dr. appts.
First to Richmond for feeding therapy...4 hour round trip and then to Loudoun for a GI appt...5 hours round trip. Lots of driving, but once again she really is a trooper. She does really well in the car and only fussed on the last leg of the trip, and who could blame her by that point. If I thought I could have gotten away with crying I would have too!

Feeding went well. All preferred foods but no blocking and no prolonged presentation. Which means she ate on her own with a few verbal prompts but without anyone holding it to her mouth or blocking her from knocking it off the tray. It was pretty hard to watch, but she did well. Brings up feelings of guilt that I can't take her each time, but what are you going to do, right? Makes me also mad that this didn't happen over the summer, but again out of my control.

At the GI she maintained her growth curve at 22lbs 3oz. I am really learning to appreciate when she stays at the 10-25% for weight. Always wish it might go up, but darn thankful it doesn't go down. He said that looking at her from a nutritional standpoint she looks like a lot of kids her age, who would know that magical neocate was doing her wonders?? :) He did put her on an appetite stimulant. I haven't had it filled yet. He said it was worth a shot, but that it only works for some kids, so we will just have to see.

When the whole day was over I walked in the door at 7:15 to find that the hamster that we bought 10 days ago when her first hamster died was DEAD. Not a good night. So hamster number 3 has joined us tonight, lets hope it's not our third strike, because if so I am done with hamsters! Keely is handling it beautifully though. First thing she asks...can I get a new one?? Wonder if she thinks all things can be replaced like that now? LOL. Thank goodness she's a flexible :)

Playdate at the Emersons

Lots of fun was had on Sunday when we heading to the Emerson's for a playdate! Eli and Keely have been friends forever :) and Jack and Audrey are 6 days apart. So, it works out perfectly!

They had a great time playing outside. Thanks so much for having us, we had such a nice time.

Here are some pics from the day :)

Fun in the swing!

Snack time in the tent!

Ready for a social day!

My girls were ready to go out and party! We headed to cousin Ryan's bday party at the bowling alley which was a lot of fun. This was taken right before we left. Have I mentioned lately that it is REALLY hard to get them to stand still and BOTH be looking at the camera at the same time? YIKES!

After the bday party I took Keely to her first "DANCE" at school. WOW. At 5 she brought me the boy to meet that has been the subject of many a dinner conversation. I met his father as well. Seems like a nice family and a very nice boy...so let's hope her taste continues on this path!

Well..here goes!

I thought it would be fun to get with the rest of the world already! When Keely was a baby and toddler I would send out lots of photos on Kodak Gallery. Well...number two gets shorted I guess. I am taking the pictures, just haven't kept up with sending them out. I wonder why??? LOL. Somehow Keely starting Kindergarten, gymnastics, and all of Audrey's dr's appointments have filled the little time we have outside of working :) So, I thought that this might be a really nice way of keeping everyone updated. To send all those pics I just forget to send. To document the milestones. So...here goes!