Linden's car wash

Our friends and family washed about 30 cars this past Saturday! It was very successful. We are so thankful for all of you (Rhiannon, Billy, Mackenzie, Conner, Micah, Leah, Stephanie, Hunter, Brock, Paulette, CJ, Salvadore, Kip, Andrea, Tim, Luke, Nathan, Nathanael, and everyone else who came and got their car washed) helped make it happen. We are so blessed to have so much support!

Here are a couple of pictures taken by Mackenzie. I realize that three of the pictures are of one vehicle, but we did have more than that I promise. ;)

Luke (Joe's brother) stood by the road reeling people in.










My awesome Sister In Law Rhiannon


Linden just waking up from her nap and seeing a bunch of people looking at her.


Alexis


Allison


Bianca

Farsighted

Yes, that's right. Linden is farsighted and had to get glasses. I think she looks adorable and stylish. Here are a couple pictures of her right after she put them on for the first time. She just stopped and looked around the room and at us very slowly, taking it all in. We had to hold her hands down so she wouldn't grab them. She's gotten better at keeping them on since she got them on Monday.

She's been so healthy looking lately. I bet it's all the prayers! Thank you Jesus! She's been bearing weight on her feet, standing for awhile while I hold her hands. She's been grabbing at our faces and pulling them towards her to kiss which is so cute!!! Her spunky personality is really shining through.

Linden's 9 month IFSP meeting

Linden is in a state run early intervention program called Early Steps. She qualifies because she has Down Syndrome and Amniotic Band Syndrome (what caused her little hand). Every month, Mrs. Claire comes over and checks her out to see if she's developing physically and cognitively as she should.

Last month we made the following goals for Linden at 9 months:

• Sitting for short periods of time
• Reaching to grab a small toy from someone else's hand
• Reaching out with her left hand (smaller hand)
• Bearing weight on her legs

As of today, 9.5 months, she has met all of her 9 month goals!!! I am so proud of my sweet girl. Even though, her medicines make her very tired and she's just plain worn out, she is still meeting her goals and surprising her teacher! She sat on her own for 8 seconds today and that's a record for her. See, when she sits, she either throws herself back or dives down to her feet.

Here's Linden standing up on Daddy's lap.

And for your viewing pleasure, some rare pictures of ALL THREE girls together!

Also, for those of you who have blogs and would like to put Linden's prayer button in your blog, just cut and paste this picture. Sweet Crystal, from Presh Web Designs, is a fellow heart mama of Bentley.

Love you all! Hope you enjoyed the pictures!

Love,
Bianca and Joe

I've created a message board

For all my family and friends! Please email me at joeandbianca@yahoo.com for the link! It would be fun to have somewhat of a live chat with all of you!

I hope you're all having a happy Sunday!

-Bianca

I've been wanting to get a shot of Linden from behind for so long.

See her ears?
Don't they remind you of butterfly wings?

No, she wasn't facing down when I took the picture.
No, she wasn't trying to eat the grass.
Ok, maybe she was.

A little.

Ok... A LOT.

I

LOVE

KISSING

HER

BUTTERFLY

EARS!

Welcome to Holland

I'm sure some of you have read this poem before, so this is for those of you who haven't.

It's all about being the parent of a special needs child. I read this poem quite often and it gives me a little reminder about how special Joe and I are to have been chosen to be Linden's parents. You've been chosen as well, to be her friends, her family. Grab a Kleenex!
_____________________________________________________________

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 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.

I scream for Ice Cream!

"What was that!?!?"


"Who cares? Just give it back to me!"


"This is the best stuff ever, Mama!"


After the ice cream bar, but before the bath.

We're 'All Set'

I heard that phrase about 100 times last time we were in Boston and heard it again this morning, so I had to use it.


We'll, Linden's surgery is scheduled. At the same time, I'm scared out of my mind and yet, relieved because this is our little girl's only chance at seeing her first birthday.

I just talked with Sherry from Dr. B in Boston's office. We need to be there on July 15th in order to be at our 7Am outpatient workup on July 16th. That's when they'll do an echo, ekg, and bloodwork. On Friday, July 17th, she'll be having a cardiac catheterization procedure at 7am. She will stay overnight and be discharged on Satuday. Monday July 20th at 6:30 Am we need to be at the hospital for her surgery. She has to stop her baby asprin one week before on July 12 and if she gets sick less than a week before her surgery we need to call them to postpone surgery.

We have been told that this surgery will not be as long (longest 7 hours of my life) or as complex at her AV canal repair last November. It's pretty straightforward from the surgeon's point of view and they seem to have a good idea as to what they'll be doing once she's in there.

Here's a cute picture of Tris and Linnie from the other day. See the redness under Linden's eyes that I was talking about before?


Thanks for checking in on us!

Bianca

~Thought for the day~
All is well. I'm ready for whatever comes today. My yesterdays have prepared me.

To all of you who called/texted/emailed me today

I apologize for not getting back to you. I'm just really sorting through some emotions and it's painful to talk about it right now. I have so much going through my mind. Please forgive me and soon I'll be getting back to you.

Thank you for your patience and your prayers!

Love you,

Bianca

~Thought for the day~
I can't be everywhere today. Nor can I attend to the needs of everybody I meet. I will carefully choose where to give my attention and then offer it totally.

Linden will be having surgery soon.

It looks like Linden will be having her 2nd open heart surgery before her first birthday.

We had a cardiology appointment yesterday and unfortunately it wasn't the best news. I had a bad feeling when Linden was weighed and she had lost around 2 lbs in a month. That's never good. Dr. B. walked in and said the usual "Questions, comments, concerns?" and I answered back that I simply don't like the way Linden is looking nowadays. I mentioned how her eyes are a purplish red underneath and she's kind of sluggish and tired looking, too. I said how Joe and my mom noticed it because they're not around her 24/7 like I am. It was a drastic difference when she was put on Enalapril and Digoxin, too. She just simply isn't herself. After I finished explaining that, Dr. B asked me how old I was. I thought it was a weird question, but I answered "24" and he said "You're a very good mama" and then he handed me his Blackberry and told me to read the email from her cardiologist in Boston (where she had her first surgery, AV Canal Repair). I started reading and saw "It would be in Linden's best interest to schedule a mitral valve repair as soon as possible" and then everything else after that was a blur. There were lots of medical terms that I just didn't understand.
Dr. B was unusually stone-faced while talking to us about the risks of surgery. He said that he has only had two patients, including Linden, in his whole practice who have had this complicated of anatomy, and the other patient did not survive. I felt a huge lump forming in my throat when he said that. He said that in another 6-9 months her heart wouldn't even be good anymore. I felt all of the blood rushing to my feet at that moment. It's like I couldn't believe that we were talking about my baby, my sweet Linden Caroline. It's a risky surgery as the wall behind where the surgery will be taking place is close to the circulatory system. Here is a very good website describing the surgery she will be having.

Dr. B from Boston will be calling me sometime this week to schedule a date.

I'll be posting updates about everything going on with us on this site instead of calling everyone one by one.

Thank you for your support and prayers during this time.

Bianca

~Thought for the day~
Well-being, my own and someone else's, will be fostered by my actions today.

April Rose is not real!

I previously mentioned April Rose here. For months I've been praying, I've gotten my friends and family to pray and for what..... a DOLL? The original blog is now gone as is all of her 'friends' blogs.

Check out this blog that exposed the April Rose scam.

http://gibsontwins.blogspot.com/2009/06/exposed-little-april-rose-scam.html

I love days like this

We had a really great day today! My house is CLEAN. My kids behaved WELL. We sat down tonight and watched the LSU baseball game as a family. (Geaux Tigers!) It was so cute listening to my husband explain what a foul ball is to the girls. They ask so many questions!! They wanted to know every detail and Joe was so good about getting them to understand. Then we all watched him play the drums. There was lots of dancin', head bangin', and extremely shrill screamin'. Haha!


And because I'm suuuuch a procrastinator, I'm just getting around to telling my daughter happy birthday. I'm only 1 week late. Oops.

Happy Birthday my sweet Aislinn Frances!!

You have made my life so wonderful since you came into it. I love you Aisey Pie Pie! I cannot believe that you are 5 years old. It seems like yesterday when I held you in my arms for the first time. I am so blessed to have you in my life!

I love this candid shot of Aislinn with vanilla ice cream on her face taken last weekend.

Wrapped around Daddy's finger

Can you feel the love or what?!?! She was holding his face and kissing him. It was just the sweetest thing. All together now, "Awwwwwwwww!!"

The girl has heart! Part 1!

There are two types of Atrioventricular Canal Defect, partial and complete. The partial form only involves the two upper chambers of the heart and the complete form allows blood to flow freely among all four chambers. They both allow extra blood to flow to the lungs. Linden was diagnosed with complete AV canal defect when I was 20 weeks pregnant. My quad-screen that I had done at 18 weeks came back with an elevated risk for Down Syndrome, so my OB scheduled a Level II ultrasound with a maternal-fetal doctor. I wasn't really worried about it because I knew that test had a chance of being wrong and I was only 23! At that appointment, the doctor was looking anything that could be considered a soft marker for Down Syndrome and that's how he discovered what was wrong with her heart. 50% of people with DS have heart defects. She happened to be one of the 50%. We were extremely worried about the fact that our small baby would need such a huge surgery soon after she was born. It was suggested that I have an amnio to rule out any chromosomal abnormalities, but that came with a risk of miscarriage and we already loved our daughter more than anything so we continued on focusing on finding a team of doctors to care for her after she was born.



After that appointment, I started doing tons of online research about what to expect. Poor weight gain, cyanosis, fatigue, difficulty breathing, and lack of appetite were some of the side effects of her particular defect. I was so sad that I was going to have this sick baby. I pictured a skinny sickly baby. I had dreams where she stopped breathing and turned blue. It was awful. At least I had about 5 more months research this and prepare for her. We ended up finding a wonderful pediatric cardiologist that made me feel so much better about putting my daughter in his care.



Linden was born September 1, 2008 at 37 weeks gestation (5lbs 9.2oz) right in the middle of Hurricane Gustav (I will post my birth story later). She came out very pink and screaming! They whisked her off to the NICU to run tests and to give her an echocardiogram to make sure all was the same with her heart and according to them, it was.

Part 2 will follow soon.

One of those days

I get excited over the silliest things! I just spent a whole hour typing in my Coke reward points so that I can get some 'free' magazine subscriptions. I can only type in 40 codes in one week---120 points and I typed in my limit. It's the first time that I got to sit down and rest all day, well unless you count the fact that I was so tired of my two older kids fighting and yelling 'MOOOOOMY' every 15 seconds, soI sat on the front porch in the rain for like 10 minutes this afternoon. I was relaxed there for a minute, but it was no different when I went back inside. I think the summertime makes kids [who, in turn, make their mothers] a little crazy.

And to top it off, my sweet little Linden got her first scratch today. She was playing with her sisters on the floor and somehow got a scratch on her face. Poor little girl was heartbroken, as were her mommy and sisters.

What's a post without a picture? Bathing suit and cap are from Gymboree's Pool Party Line.

Nine

Someone is NINE months old today!!

She found her feet last week and has been chewing on them ever since. She had been trying and trying to get them to her mouth and she finally did. She also loves hanging out in her swing! She's roughly 15 lbs and 23.75 inches (5th percentile for both). She's very petite. She's still nursing and is not too keen on solid foods, yet, but she has tasted sweet potatoes, sweet peas, pears, peaches, bananas, and oatmeal. She is such a delight and we love her more every single day!

Here are a couple pictures of her enjoying a Froot by the Foot wrapper.