What were you doing on January 29, 2009?

I was doing this.

But instead of dwelling on the past, I would rather think about the present...and how back on that day two years ago...I never in a million years expected that I would have two little redheads to love.  And my oh my, how different they are. 

But loved.
Oh so loved.
Just the same.

The Next Steps

We met with our new neurologist today. We loved him. He was awesome with Abby. He was awesome with us.

The long and short of it is that he concurred with our orthopedist's findings. So, not surprisingly, the next step is an MRI to confirm the diagnosis.  He suspects that at some time during my pregnancy or within the first few hours of Abby's life, she suffered from some sort of minor brain bleed. The awesome news is that whatever the damage, it appears as though it is extremely mild, which is surprising even to the doctor, given the complications I had during that pregnancy and her low birth weight.  The fact that she has hit her milestones (sitting, walking, talking, etc.) is reassurance that whatever we are dealing with is definitely on the mild side of the spectrum.

He wrote a prescription for PT so that we can go through our insurance and get started right away without having to wait the months that it might take to get through the CCS system (although we are hopeful that we will be accepted into CCS). And as I am sure any parent can imagine, I am horrified at the thought of having to put Abby under general anesthesia again.  It gives me some peace to know that this is just an MRI...it's not a surgery that she will wake up from in pain. I hope all she remembers is a nice little nap when it is over. But the hospital, the IVs, the going under...I was hoping we were done with that two years ago.  I don't know about you, but I can't believe we are 2 days away from the 2 year anniversary of her colostomy takedown and here we are, back at CHOC, with doctors and specialists and tests and therapies and worry and so on and so on.

But here we are indeed.

And I know I haven't had the chance to respond to everyone who has commented, texted, emailed, called...and I'm sorry, but your kindness and your prayers don't go unnoticed. Thank you so, so much for keeping our family, and more importantly Abby, in your thoughts and prayers.

It means the world to us.

Wordless Wednesday

(Better luck next season, Bears)

Breathe

It's been a tough week.

We've been couped up.

Sick.

Tired.

Sick of being sick and tired.

We needed some fresh air.

We got fresh air.

For a little while (at least), we got fresh air.

And for a little while, I didn't worry about our upcoming Thursday appointment with our new neurologist.

Blindsided

Let me preface this by saying that I have really been struggling as to whether or not I wanted to post this information. On one hand, I figure why not…I’ve shared just about everything else on this blog. On the other hand, this is a tough one to grasp and uncertainty is surrounding my family right now. And let’s face it…I don’t have many details yet and therefore maybe talking about it here is a little premature.

But sometimes, when my thoughts overwhelm me and I am too tired of talking about things out loud (and my husband is away at work for days at a time), the next best thing for me to do is to write my thoughts down.  With that said…

Ever since Tuesday I have been walking around feeling as though I had just been hit by a speeding train.  As we all know, Abby is just about 2 ½ years old. She has been through so much and has fought so hard. She is so awesome and big and strong and smart and pretty and our miracle TTTS survivor and when you look at her, you would never in a million years believe that she was ever a preemie, let alone one who went through what she did in the first 6 months of her life.

When we brought Abby home we were followed by CCS. She got 1 hour of physical therapy once a month for about a year, until we were eventually cut off, not only because of state budget cutbacks, but because Abby was doing so well, developmentally. She was also seen by early interventionists every 6 months and was discharged at age 2. Awesome.

Something I’ve always noticed is that Abby doesn’t quite walk on her right foot the same way she does on her left.  She seems to slightly ‘favor’ her right heel. I’ve kept my eye on it for a while now, and last week I started to think maybe we should have it looked at by an orthopedist. I didn’t think she was injured. I just remembered that before she started walking she was definitely pigeon-toed in the right foot, but it certainly didn't get in her way. I just thought maybe he could prescribe a little physical therapy. No big deal. After all it couldn't be anything major.  The previous therapists didn't notice anything. The early interventionists at EDAC didn't notice anything. Our pediatrician didn't notice anything.

So I made an appointment and Tuesday we went to see the doctor.  He took us into the hallway to play with a ball. He wanted to see her run. She ran.  Then he did a little examination…checked her reflexes and stretched her out a bit. Then he looked at me and said…

“She doesn’t have an orthopedic problem”.  (you may have heard my giant sigh of relief)

He said:

(cue the speeding train)

“It’s a neurological one”.

Can we just live in a bubble?

I know everyone gets sick during the wintertime. But my kids were preemies.  Their lungs aren't nearly as developed, even at their ages, as full-term kids the same age. So going to indoor, confined spaces...is usually not a good thing.

Case and point:

Poor Lilly. After a night at Pajama Storytime and a morning at the gym running (or in Lilly's case, crawling) on trampolines, mats, balance beams, ladders and slides, this is what Lilly looked like.

Next thing you know we have runny noses, coughing, fevers and oh my...PINK EYE.

Both girls are now on antibiotics and even though we thought Lilly was the "sick one", we were surprised to find out today that Abby has a double ear infection.

Seriously, can we just live in a bubble?

I can't help it

I know we still have another week to go, but I can't help myself. I'm not a bandwagon fan. The fact is I am originally from Chicago and even though its been (many) years since I've lived there...I remember going to the games when I was little, wearing my Walter Payton jersey...by the time we made it to the Superbowl in 1986 we had already been living in California for 6 years...I totally remember watching the Bears beat the Pats in the family room of our house on Aspenwall Lane.

Go Bears!

Resolution Update

Resolution #1 - One toy at a time.

I am proud to say that my closet pictured in this post, is amazingly still in tact. Every once in a while we end up with more than one toy out at a time, but much to my surprise, we are sticking to this resolution much more than I ever imagined we would.

Resolution #2 - A new hairstyle.

It happened. Last Thursday. Nothing major. About 4 inches cut off. Long layers. Really nothing exciting. But it works.

Resolution #3 - Cry it out

I knew this one had to be one I was really ready for, and I guess deep down inside I was ready. And to be honest, I guess Lilly was too. It only took 3 nights...not bad...and she was sleeping through the night. Now don't be fooled - I don't put her in her crib while she's still awake yet. This cry it out mission was merely to get her to sleep in her own crib and through the night. The put-her-in-her-crib-awake-and-let-her-fall-asleep-on-her-own hasn't happened yet.

Baby steps people.

Seriously.

Stay tuned for more resolutions because I am on a roll.

For the love

For

the

love

of

Wildtree

Alfredo

Extraordinaire!

Wordless Wednesday

I cried today.

I know. Shocker. Today was different though. It was unexpected. It was overwhelming. It was in public.

It all started when we arrived at storytime at our local library. We go (almost) every Tuesday. We see the same people. We do the same thing. Abby and Lilly love it.

Today though, was different. We saw lots of new faces...but in particular, four little faces that stuck out like bright stars in an otherwise dark sky. That's right, not one, but two sets of identical twin girls. They looked to be about the same age as Abby. One set was right in front of us, one just to the left. Wearing the same clothes and shoes, with the same hair, same eyes, same everything, I sat and wondered how their parents could tell them apart. As the storytime lady sang songs and read books I just sat and stared. I watched them dance together. Twirl together. I listened to them giggle the exact same little giggles. I watched them hold hands with eachother as they listened and watched intently.

And then I looked at Abby.

Dancing. Twirling. Giggling.

But doing it alone.

And I cried.

In public.

At storytime.

I stared at the parents wondering what they had been through. Had they been the lucky ones who didn't suffer from TTTS? Had they not been so lucky but their babies both survived that awful disease? Why did it happen to us? Why were we robbed of this baby we wanted so badly? Most importantly, why was Abby robbed of something so precious. A bond so rare. A lifetime spent with her identical twin sister.

And while I watched Abby dance and twirl and giggle alone, I pictured them both.

And I cried.

Resolution No. 3 - Cry it out

Somehow over the course of the last year, I became addicted to sleeping with Lilly. I know it's bad. I've talked to the pediatrician several times who reassured me that I will stop when I'm ready to stop. But I am, seriously, addicted. And I don't know how this happened considering I have never let Abby sleep with us. As soon as she got out of the hospital after her colostomy takedown she went right in her crib and has slept there ever since.

Anyhow, back to me and Lilly. My resolution number 3 is to take back my bedroom. I think it finally hit me that it was time when Abby walked by the master bedroom the other day, peaked in, pointed at the bed and said "Lilly's bed". That's when I realized it's been too long. It's gone too far. It has to stop. And dare I mention that Lilly still wakes up, like clockwork, at midnight and 3am for a bottle? She's a year old. I haven't slept through the night in a year. And it's totally my fault.

Ok. So last night was our first night. Getting to sleep was tough. It took 25 minutes and (surprisingly) only one glass of wine (for me, not her...just to clarify). And would you believe that she didn't wake up, at all, all night long? I finally woke at about 4:30am and couldn't believe it when I looked at the clock. I checked on her and she was fine. At about 5am she stirred a little-but nothing major. I on the other hand, struggled to get back to sleep. Nonetheless, the little stinker slept until 8am.

Holy. cow.

Tonight is our second night. She fell asleep in the recliner. I put her in her crib. She didn't make a peep. I'm not sure if it will be as good as last night, but here's hoping...

New Years Resolution 1 - One Toy at a Time

We have a closet under the stairs. It's been, shall we say, a little bit of a catch-all as long as we've lived here. Sure it gets cleaned out and organized every six months or so, but even when it does, it quickly reverts back to it's rather embarrassing state. Lucky for us, it's rare that anyone other than immediate family even attempts to open the door. And lucky for us, our immediate family is kind enough not to comment.

If you are having a hard time imagining just how awful this closet can get, I'd liken it to Monica's closet in "the one with the secret closet" episode of Friends. If you don't remember that episode, here's a little reminder:

Things may not be piled up to the ceiling, but seriously...it's almost that bad.

My first resolution: one toy at a time, is being implemented because, let's face it, we have a rediculous amount of toys (and thanks the holidays and a December birthday) it's even worse now. And these toys seem to always. be. everywhere. Sure we put things away every night, but walking though our family room is like walking through a mine-field and if you are not wearing shoes, you could get hurt.

Back to one toy at a time...it required me cleaning out the closet in order to store all of the toys that are usually stacked, scattered, placed (not so neatly) different corners of the room. So, now, the plan is that the girls will take one toy at a time out of the closet to play, and then return that toy to it's proper place in the closet when they are done with it and want to play with something else. Sounds easy. We'll start today. And we'll just see how long it lasts.

But in case it doesn't last long...this is what the closet looks like today.

Up next: New Years Resolution #2 - A new haircut, or rather, a new. hair. style.