Friday, June 29, 2007

Can you tell me how to get.... to get to Sesame Street???

We're gearing up for this year's big vacation to...drum roll please....Pennsylvania!

We're going to spend two days next week at the one and only Sesame Place, complete with a Character Dinner! Doesn't that sound like the vacation of a lifetime? Honestly, it will probably be the best vacation I've ever been on just because my girls are totally going to FLIP OUT! I cannot wait to see the looks on their faces when they see all of their favorite friends. I can already hear Eden's squeal.

Let's just all PLEASE stay healthy. Eden made me very nervous this past week coming down with congestion and a cough. Luckily she seemed mostly better yesterday, and completely better today. I did have a moment of panic thinking about spending our vacation in the hospital rather than PA, but I think all is well.

I have been keeping extremely busy so far this summer, between doctor appointments, therapies, baby group, and the NICU Family Advisory Board.

Last fall, I joined this group at the hospital where H and E were born, and have really been enjoying myself. I am the chairperson for planning our annual NICU reunion which will be August 18th. I also recently completed a 4 week Parent-to-Parent training program. Through this program I will be able to connect with other families in the NICU, and hopefully act as a mentor or support person to them. I am really looking forward to that. I am also very excited about being chosen to represent the hospital and FAB at PreemieCon 2007 in Washington DC at the end of August. It should be really interesting... I am particularly looking forward to a presentation about long-term feeding difficulties in preemies. Especially after a day like today where they ate NEXT TO NOTHING!!!

Wednesday, June 27, 2007

Who are you calling a poor baby???

I met someone today whose preemie baby was recently diagnosed with CP.

I told her about H and E, and the first thing she asked was if Eden could walk. I explained that Eden could walk in her pony walker, but would probably never walk independently. The poor mom burst into tears. She said that the doctors have told her that her son will probably never be able to walk. She repeatedly said "he's gonna walk." "Aren't you?" "You're gonna walk."

She also said "poor baby, poor poor baby" in reference to Eden. She's clearly never met Eden. Poor baby my ass.

Friday, June 22, 2007

I loooove to sleep!

My kids slept from 10pm to 10am the past two days. I went to bed at 11:30 and got up at 9:00, took a shower, made coffee, and am writing a blog post before they get out of bed! I am so NOT a morning person. Back in my past life I used to go to bed at midnight all summer, and tried to FORCE myself out of bed at ten. I really love to sleep. I'm SO glad that my kids like to sleep too. The world is a better place after a good night's rest.

This is a big reason why I am not sure I can have any more kids. The not sleeping thing is very very scary for me. I remember those days and nights where I thought I might DIE (or kill someone) from not sleeping. I'm not sure I could do it again. And sleeping through the night is just the tip of the iceberg in terms of things that scare me about another pregnancy/baby. But I shouldn't say "can't." You would be amazed at the things you can do when you have to!

Monday, June 18, 2007

If you're happy and you know it...

...then your face will surely show it!

Sunday, June 17, 2007

Happy Father's Day... the two best Daddies in the world!

Friday, June 15, 2007

School's Out For SUMMER!

I love my job. I can't imagine having to work year round. It's so great every year to have that last day of school to look forward to, and to have the whole summer ahead to spend time with my kids. It's going to be a great summer. The girls are at such a fun age where they are really able to enjoy being outside. They love playing in the water, trips to the zoo, going to the library, and playing at the park. I love it all too.

I do kind of miss out on a lot of the fun that comes along with having almost-3-year-old twins though. I can't really take them anywhere on my own, unless they stay in the stroller. I can't meet a buddy for a playdate at the park, without an extra set of hands to help me with the girls. Obviously, Eden needs one-on-one attention the entire time, so there is no time for chatting with friends or other moms. Holland also still needs pretty constant supervision. Although she is able to walk and gets around pretty good on her own, she still has a lot of difficulty running and with uneven surfaces. She stills falls A LOT more than other kids her age. With Eden being so much more severe, we tend to forget that Holland has CP too, until we see her playing with other kids her age. Then her delays become pretty obvious too.

I don't mean to complain too much though. We still have SO much fun. I love Holland and Eden's personalities. They are such funny, interesting, and cool kids. They really love to play, are so interested in learning new things, and are so easily entertained. Eden always wants to be right there in the middle of the action. We get a great workout trying to keep up with her.

Wednesday was my last day of work! I share a job with Roya, and we both brought our kids to work on Thursday to see everybody before their last day. I have been so lucky to job share with Roya. I really like her, and we get along so well. I also like her kids, and enjoy spending time with them. After we stopped by work, we came back to my house for lunch and to play in the pool. The kids all seemed to have so much fun. We'll definitely have to get our kiddos together more this summer. Noah will turn 3 this month, so he is about a month older (or several months depending on how you look at it) than H and E.

This summer also brings about a whole slew of doctors appointments. Next week the girls will see the pulmonologist for their post-pneumonia follow-up. I suspect that we will do repeat x-rays while they are healthy, so we can see how their lungs look on a good day. Next week also starts baby group through the school district. I am looking forward to it this year, because I think the girls will really enjoy it and will be more engaged in the activities. Should be fun!

Sunday, June 10, 2007

Way to go Daniel!

You guys have to go check out Daniel's blog and watch the video of him using his power chair for the first time. It makes me cry every time.

Congratulations Daniel! I hope you get your own set of wheels soon, and enjoy your newfound independence.

Saturday, June 09, 2007

"I'm All Dressed"

This is Holland's newest thing. She likes picking up random pieces of clothing from around the house, sometimes out of the dirty laundry hamper, and putting them on. Most of the time they end up on her head, but sometimes she puts a shirt on her legs, or pants on her arms. Then she comes to me and says, "I'm all dressed."

I also had these headbands out and was going to toss them (since they don't work for Eden) but she adopted them as her own. She likes to put them around her neck, with two or three on her head, and wear them all day.

She's such a riot lately. Sassy. But funny.

Monday, June 04, 2007

It won't get any worse...

This is something I have heard a lot in speaking with doctors about Cerebral Palsy. "It won't get any worse." It is the kind of thing that you are desperate to hear in the beginning. It makes you think that you can handle it. You know, it's mild right? ...and it won't get any worse. You hear these things so much louder and more clearly than anything else. Words thrown out without regard to your desperation. Words like "mild", "slight", "minimal", and the big "it won't get any worse."

What they don't tell you is that none of this means anything. Or maybe they do tell you and you just aren't listening.

What does "it won't get any worse" actually mean? It means that the actual brain damage that has occurred will not get worse. Cerebral palsy is not degenerative, and barring extenuating circumstances, no additional injury will occur in the brain. That's all it means.

That said, in my experience CP most certainly DOES get worse. It is worse when your almost 3-year-old cannot sit up than it was when your 1-year-old could not. It is worse when your almost 3-year-old cannot walk than it was when your 2-year-old could not. It is worse when your almost 3-year-old cannot assist in feeding, dressing, bathing, or toileting herself. And it will be even worse when your 5-year-old, or 16-year-old, or 25-year-old cannot do these things.

It does get worse. I'm sure it gets worse as your child's body grows, and their muscles become tighter and they develop contractures, or when their trunk tone causes floppiness that ends up causing their spines to curve. It is worse when you have to watch them endure multiple surgeries to cut and lengthen muscles, endure painful injections and serial casting, or undergo spinal fusion surgery.

It gets worse when your child is in a wheelchair that you cannot navigate to shop at a favorite store. Or when your child watches the other children run away from them to go play on the swing set. Or when the other kids are climbing and playing on the playscape, but your little one cannot join in.

It gets worse when she continues to have trouble eating because it is too difficult to sit up in the chair...when her floppiness causes trouble coordinating swallowing and she has constant reflux...when she has her first seizure...when her IQ scores show that she has a cognitive impairment...when the meds she is on for her reflux or seizures cause disturbances in other areas. I am sure these things are worse.

It gets worse as your baby becomes more and more aware of what she cannot do. I dread the day that she stops trying because she knows she can't. I dread the conversation about why the other kids do not want to play with her, or why the people in the store are staring. I cannot bear to think of the day when she realizes that the boy she has a crush on probably won't go out with her. Or when she understands that she probably won't be able to have kids of her own because her body can't handle a pregnancy. Yes, it gets worse.

While everything else CP related gets worse, I work toward coming to a place of acceptance. This is our life. I will spend the rest of my days dealing with CP and all of the physical and social elements that come with it. It is not what I had planned, or how I envisioned my life, but it is what it is, and I will strive to make our home a place where we work hard and do therapy, but also a place where we have lots of fun, talk to each other, and are unconditionally loved and accepted for who we are.

The bright spot in all of this is Eden. She is my ray of light, my silver lining. Whatever sliver of hope I can muster is for her. My love for her, and for Holland, grows exponentially every day and everything in my life is certainly better because of them. I have asked myself this question many times. If I could go back in time and do it all over, knowing the outcome would be exactly the same, would I do it? I am finally at a place where the answer is a resounding YES! They are worth every second of pain, or stress, or worry and my life is better with them in it.