Tuesday, June 30, 2009
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.
Thursday, June 25, 2009
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.
Wednesday, June 17, 2009
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.
Bianca and Joe
Sunday, June 14, 2009
Saturday, June 13, 2009
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.
Ok... A LOT.
Friday, June 12, 2009
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!
by Emily Perl Kingsley.
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, June 11, 2009
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!
~Thought for the day~
All is well. I'm ready for whatever comes today. My yesterdays have prepared me.
Wednesday, June 10, 2009
Thank you for your patience and your prayers!
~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.
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.
~Thought for the day~
Well-being, my own and someone else's, will be fostered by my actions today.
Tuesday, June 9, 2009
Check out this blog that exposed the April Rose scam.
Saturday, June 6, 2009
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.
I love this candid shot of Aislinn with vanilla ice cream on her face taken last weekend.
Friday, June 5, 2009
Thursday, June 4, 2009
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.
Wednesday, June 3, 2009
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.
Monday, June 1, 2009
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.