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Tuesday, October 04, 2011

October 4th 2011 - Kaitlyn turns 6 today.

Well, as many of you know, I don’t seem to blog much any more ..Guess life kids and a busy working mom has gotten in the way of a lot.

But just had to write today, Today is my twins birthday….October 4th.

Still not an easy day for me, all my mind goes to is a scene I play over and over in my head as I’m being wheeled to the OR saying it’s too soon, it’s too soon and then later holding my daughter as she passed away…not really the best of memory days for me..

Today my surviving twin turned 6 years old! So hard for me to believe that she is really 6 years old.

She’s doing really, really well, all things considered.

From a 26 1lb/10 ounce little baby to a 33 pound TALL little girl that is doing really well in Kindergarten.

We had our age 6 IEP transition meeting and thankfully my school is really incredible and basically “found” a way for her to qualify again. They are so great at understanding that we still don’t really know if she is going to have issues when it comes to learning in a few more years and they would rather have the IEP in place (as would I) in case there are more issues that surface.

She gets preferential seating, she has a weighted Lap-buddy kitty-cat that the school provides to help stop her wiggles. With her paralyzed vocal cord, this allows the teacher to better hear her.

We had a doctor appointment today with a plastic surgeon to talk about correcting her gtube stoma site. He gave us 2 options to put her under a General now or wait until she is 10 and can sit still enough to do it under a local. As she is once again sick, I’m opting to wait until she’s older, it’s just cosmetic at this point, no need to rush, she’s not trying to impress anyone in a bikini yet!

And to think that this is one of our biggest decisions, that basically it’s for such a minor thing. She’s really doing well.

What I find most amazing of all is how many people tell me all the time how amazing, special and incredible Kaitlyn is. Her therapists, her teachers, strangers, people I’ve just met. Everyone comments on the fact that she is one of the most amzing, engaging children they’ve ever met and that she has a very special energy about her.

I know what that energy is, it’s her sister looking over her and making sure she’s ok. Corinne, we miss you terribly, but we thank you with the bottom of our heart for hanging in there long enough for our wonderful Kaitlyn to be here with us today and for your special looking out for her all the time.

My love to both of my girls on this October 4, 2011.

I love you Kaitlyn my sweet girl from the bottom of my heart, you are the most special, incredible little girl and I'm so lucky to be your mama. I love you Miss Kaitlyn!

13 comments:

Tokyo Biker Mommy said...

Very sweet post to your birthday girl. I'm so happy for you that you've come so far with your family. :)

Anonymous said...

Thank you for writing this. It brings tears to my eyes. And although it certainly makes sense that you don't blog that often anymore, I LOVE keeping up with Kaitlyn and Quinn, and I wait for any updates you can give when they come.

Anonymous said...

Liz, I read your entire journey from start to finish in a few days. I must admit that I admire your honesty and bravery and your dedication to your children and the challenges you faced with raising them. I love reading all your updates on them and am looking forward to reading many more. RIP to your beautiful angel daughter Corinne. She has touched the heart of many who have read her story. I wish you lots of good things to come in your present and future.

-Neela (neela0816@gmail.com)

Patti said...

I still tear up.

Anonymous said...

I just wanted to let you know that there is a girl using the name Makayla evans on facebook who is using pictures of your daughter and claiming it's her baby that died. I've found the real owners of all the pics except one, and have been attempting to notify the real parents.
her facebook profile is http://www.facebook.com/profile.php?id=100002851949098

The online memorial where the picture is is here http://payton-grace.gonetoosoon.org/photos/list/

I can be reached at stargazingmommy@yahoo.com if you need to contact me.

also, your kids are beautiful

Anonymous said...

I don't suppose you could spare a moment to give a 1 time vote for my son in a halloween contest on facebook... I'd really appreciate it! Please like page, then scroll down past form, My lil man is in 1st, red demon costume, black wings. Thanks!! http://www.facebook.com/iNetVideo?sk=app_268980443136473

Mab said...

It's nice to hear that she's doing well. My baby boy is 6 months old now, and I worry about his progress every day. He's so beautiful, and I'm so proud of him, but I worry nevertheless.

Jamie Lee McLanahan said...

Hi! I found your blog on Google. My baby Wendy was born at 33 weeks, and while that isn't as early as some preemies, she's also has a chromosome abnormality, one that no doctor has ever seen before. She's definitely a miracle. Water broke at 29 weeks and I spent almost 5 weeks in the hospital before I had her. I've been keeping a blog too. :) It's a great way to share/vent/get support. I hope your family is doing well. God Bless.

female obgyn said...

Happy Birthday! Enjoy your day.

Benita Wheeler said...

benta wheeler-my little mini is 6, he is mess, but i love him.

rgard99 said...

Hi, I just found your blog and look forward to reading your entire story. First of all, congratulations on your Kaitlyn turning 6. Our miracles were born at 25+ weeks and spent 100+ days in the NICU and I have just started to chronicle our story. What stands out in your post is that it appears that you confidently blog about Kaitlyn as a twin. I have struggled greatly over what I should refer to my triplet survivors as because it always ends up confusing people that I meet. It ends up a much simpler conversation when I introduce our two triplets as twins. When I do introduce them as "our two triplets", the conversation depending on the disposition of the person on the other end of the conversation either abruptly stops or turns into a recantation of their life story.

Do you or anyone else have thoughts on the matter?

Anonymous said...

hey hun i know what u went through for the most part i just had my son at 23 and a half weeks early and weighed 1 lb 4 oz he is a micro preemie. so far he is doing ok but not able to eat due to a tube that goes from his bowels that is swelled. its been really hard knowing that he can eat yet or come home. he also gets a lil help with him to pee. he gets blood sometimes to and is on a ventilator. sometimes he can breath room air and sometimes he needs a lil help. my first son was born a preemie as well he was at 32 wks and weighed 4 lbs 5.3 oz. and now is a healthy lil boy weighing 24 lbs and is a year and a half. im sorry to hear about ur twin passing. i saw ur pic video and cried cause i know how it is to have preemies.put now i cant have anymore cause i can go through to having troubles with my pregnancy's.thank you so much for the strengh from ur videos. if u ever want to chat or have any questions u can contact me at whiskeygirl6869@yahoo.com or on facebook. u can use my email address to find me or my name.thanks nikki johnson

Brian Duarte said...

Wanted to congratulate you on your miracle baby girl...such a blessing. Glad that she is doing well. My wife and I have a similar story. We had twins on Sept 19, 2014. Maximus and Sophia Rose. They were born at 23 weeks and 1 day gestational. Max was born at 1.4lbs and Sophia at 850 grams. Sophia lived about 10 hours...like your girl...her lungs were too damaged from lack of fluid. Sophia sac had leaked twice out of my wife. Maximus went on to fight a long 141 days in the NICU. He survived through 4 surgeries and 2 staph infections and an appendix that became incarcerated in his right testicle. At 4 days old he made it through an emergency surgery due to his bowels perforating in three locations due to the endocine he had to take for the hole in his heart when he was born. He has gone on to thrive and now is home and growing. He is currently 17lbs and developmentally on pace. I was glad to hear your story in that miracles do happen...You just have to believe.