Not much really going on around here....I've been busy taking care of the kiddos and with the holiday coming up. But thought it would be nice to share some pictures that I took of Anna and Justin today while I was waiting for the therapist to come (Ayva was taking a nap)
since I blogged about our lives. We're pretty much just truckin' along...nothing much has changed. Ayva doesn't see the Neuro until January. It seems EVERYTHING is happening in January. Ayva's neuro appt., the kids *late* 2 year check up, a follow up cardio appt. .....and the list goes on and on... Seizure wise....Oh I don't know...it's SO hard to tell if she is having any or not. She is VERY easily startled, and that is exactly what her seizures look like. I'm HOPING that they are just startles and not seizures, but who knows! Ayva is getting to start Aqua-Therapy soon and will be joining Anna- who LOVES it! I think it's done her a lot of good! They have a developmental Pediatrician appointment on Monday and next week is Ayva's follow up for her G-tube.
Speaking of G-tube..Ayva has gained almost 2 WHOLE POUNDS! Which is fabulous! Everyone is doing good and just thought you all would like an update! I will leave you with some recent pics!
Justin checking out the train at Crown Center
Anna watching the train from her stroller
Granny with Justin
Granny with Anna
My sweet girlies
Tomorrow I will try and post some pictures from their birthday and such...hopefully.
Just 2 years and 2 days ago, my trio were born 11 weeks early. Anna weighed just 3 lbs 1 oz. Ayva also weighed 3 lbs 1 oz. And Little Justin weighed 2 lbs 15 oz. They spent a horrific 55 (for Anna) and 57 (for Ayva and Justin) days in the NICU battling infections and trying to learn how to eat, and keep their temperature up and everything a full term baby will automatically know.
Anna, Ayva and Justin are 2 today!! I can't believe these past 2 years have gone so fast...it seems like yesterday my sweet angels looked like this...
And today they look like this... (Justin and Anna)
It's been a really rough road to get here, but I think that just to have these three miracles in my life, it's all been worth it. We've struggled through being born early, getting life threatening NEC infections, Group B Strep infections, the girls being diagnosed with Infantile Spasms, the girls being diagnosed with Cortical Visual Impairment, Ayva almost dieing from infections from taking ACTH, and still trying to become seizure free... I can only hope that by their 3rd birthday, they will have had it a little easier, because they have already fought through more than any adult I know...
I love you my precious, sweet babies....Happy Birthday! Love, Mommy
I've came across this before, and now I think it's a good time to share it with all of you.
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 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 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 guidebooks. 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 many never be free to enjoy the very special, the very lovely things about Holland.
W.O.W. 23 months old today. I really cannot believe that in one short month my babies will be TWO!!!!! It seems like these past 2 years have flown by. It will be a happy moment when they turn 2, but also a sad one. Last year, I was hoping that by this year Ayva would be seizure free. It's not looking like that is going to happen, but I try to stay a little hopeful. Anyways, here are some new pics of the trio in their halloween costumes!
Her surgery went well. She had to stay overnight b/c the hospital has a policy that if you are under 2 you have to stay overnight. She will be 2 next month. Anyways I can already tell that this was a good decision we made for her. More food in her belly means more energy! And she is awake more and happy! She's probably also happy b/c she hasn't had to take any of her medicines by mouth since Thursday morning! She HATED her medicine and now she is just overall a happier kiddo! :)
Thanks to everyone who kept her in your thoughts! We really appreciate it!
I share with you a letter from a fellow IS family, who says it better than I could.
From: Marissa's Bunny Sent: Wednesday, September 23, 2009 3:26 PM To: Ken Lilly Subject: The Child Neurological Society, Questcor, and Infantile Spasms Awareness
Week Greetings, fellow infantile spasms parents! You may or may not have heard of me or Marissa, but we're in the same boat as all of you. Questcor and the Child Neurological Society are teaming up for an Infantile Spasms awareness week, but it seems to be a very focused event, and is only taking place at the annual CNS convention. This doesn't seem quite right to me. Following is the text that's being posted on Marissa's Bunny today discussing this, and I'd very much like it if you could either link to my blog with the post, or enter the text on your site as well with attribution to Marissa's Bunny.If you'd rather do neither, that's fine too- but please address your blog reading public about this. Questcor has taken enough of our money and uses our children as shining examples of how their business process helps us, and disregards the fact that our insurance companies have paid them hundreds of thousands of dollars collectively. They speak a good game of promoting awareness, but I still have yet to see anything tangible, and buying a buffet table at a neurology convention and calling it "awareness" seems hollow to me.It's hard to get a group of anybody to do anything in conjunction. Maybe this time, if we all speak out at once, we can get something tangible to happen. Please send this email to any other IS bloggers you may know. If awareness is what they want, then awareness is what they will get.-
The trio turned 22 months yesterday. Two more months and they are 2. I can't believe how big they are now. Although, it doesn't seem like this year has been moving at all. It seems like we are at a stand still. Tomorrow we will know what Ayva's EEG said, and also we will be talking about weaning Anna off of her Topamax dose. She has been seizure free for 13 months now. I'm sure there will also be talk of putting Ayva on the Ketogenic diet. Which will require at least a 48 hour hospital stay. And also I'm sure there will be talk of the Surgery Clinic appointment she has on the 22nd about a feeding tube. Life stinks. Anyways, we are just taking it one day at a time....so I will leave this depressing post off w/ some pictures.
Also I have a website for my photography. You can go check it out! www.wix.com/saucysarie/sarah