Wordless Sunday

Somehow that title doesn't sound as good as the alliterative version. I am really sad that the weekend is over. My husband will be leaving at 4 am on Tuesday to take Francesca to Dallas for her second fingers/toes surgery. He will be gone for five whole days!!!

Don't leave me with the children!!!!!

Even though we have tons of food, I have this irrational fear that we are going to run out of food while my husband is out of town. I have no idea how I will stuff Victoria in a shopping cart. What if someone falls and needs to go to the emergency room? What if the dishwasher breaks? What if I need more candy? Really, there is nothing to worry about. I can get Victoria into the car by myself  by breaking just a few back muscles. I am sure it will be fine, just fine! Right?

Sorry, this is not turning out to be wordless.......

And now, a word from our sponsor.......

Special Treats

Things are looking up. Today, we received a package in the mail. Surprises of any kind thrill me, so I ripped open the box and found such wonderful treats! I have been smiling all day!

Brenda made all my girls satin pillow cases. She sewed them herself, they are home-made (you can see how this would blow me away since I can barely sew on a button). Brenda also sent me some chocolate (and some for Elliot too, though I may have to confiscate it).  I think I can survive until the weekend now, if I can just keep the candy hidden and then remember where I put it.  The whole package totally made our day! Thank you so much Brenda!

Anastasia said she felt very fancy sleeping with her own satin pillowcase.

I think Brenda could sell these purses and make a bundle; they are adorable!

Victoria loved the feel of the satin.

Francesca carried her pillowcase around all day long. Can you tell what is on her pillowcase? Food, of course!

I also got some good news today. Our local Shriner's bought Victoria and me non-stop tickets to Philadelphia! I am so relieved not to have to worry about a 12 hour trip. 

Another little treat I discovered today is a way to keep Francesca and Catherine busy (and not fighting) for along time. Birdseed. Yep, they will spend an hour dispersing birdseed all around the yard.

Now if I could just get a smile from this little one. Hopefully soon. At least in two weeks, she will get her arm cast off.

New Skills

I am thrilled to announce that little Catherine learned a new skill today.

                                                                    Pouting

I have to try really hard not to laugh because she thinks that her pouting is really ruffling my feathers.  But hey, if she wants to go quietly pout about something, who am I to stop her! I much prefer it over the huge whining, screaming fits of last week.

Francesca was quickly on the scene as the cheer-up committee.

I also learned a new skill today. I call it "chop the hair". I am kind of weird about my kids hair. When they are little, I really like to keep it long and I am not fond of bangs. I don't know why. They just seem so final. However, little Catherine keeps slurping on her hair and making it slimy, so I had to take drastic action.

Catherine was ambivalent about her new style. She was worried about the rest of her hair coming out while she was sleeping.

"I like my hair so far mommy.", she told me, " but what will happen to my hair tomorrow?" You just never know around here.

So, what do you all think, did I mess up her hair? My son's hysterical laughter has me worried.

Yummy, Yucky

The kids have a book they love called "Yummy, Yucky", which simply talks all about delicious and gross things. Things like:
"eating hamburgers are yummy"
"eating boogers are yucky"

This pretty much describes my week so far. I am struggling really, really hard to be positive and not have a major pity party, but I may have to whine just a little.

Also, if you are squeamish, I am going to be writing about some gross, oozing stuff, just to warn you.

Yesterday was about a 20 on the bad day scale. I had to put my beloved cat to sleep. Sure, Norman Bates  had a few issues, but he kind of grew on me. You can read about him here: http://www.blogger.com/blogger.g?blogID=6480927676896809475#editor/target=post;postID=7065806002780510684

One of Victoria's incision's is still really infected. I was changing the dressing yesterday, when all of a sudden, the skin popped open and a bunch of yucky stuff oozed out. Now she has an inch hole in her skin. I am not easily grossed out (unless throw-up is involved, then I am outta there), but seriously, I had to close my eyes for a minute. Unfortunately, I had to deal with the problem (there is probably a moral here, but I don't really care what it is at this point). The nurse told me I had to pack the wound. This means, I have to push a gauze pad into the hole twice a day. How about that for yucky!

I finally got my medical flight info yesterday. Super duper excited about it. The plan is for me to fly from Atlanta to Denver, have a four hour layover, then fly to New York City and then drive to Philadelphia. The whole trip would take over twelve hours with a baby in a spica cast. I'm thinking this plan is probably not a good idea., so, now I am trying to figure out a way to fly that will not cost a ton of money. Ideas anyone? I have contacted my local Shriner's to see if they can help, but no news yet.


On the bright side, today I made it to the CVS to gather some urgent supplies for my survival. (I really gotta change my Christmas table cloth soon)

On the yucky side, my husband hid the treats so the kids wouldn't eat them and then he forgot where he put them!!!!


On another positive note, I was quite proud that I managed to make a healthy dinner tonight.

Unfortunately, I also forgot to wash utensils, so we ate with measuring spoons. No one liked the potatoes anyway, so it all worked out just fine.

Another good thing, Francesca had her pre-op appointment at the pediatrician today. (Her surgery is next Thursday. to release the rest of her fingers and toes.) She now weighs 33 pounds! That means she has gained 14 pounds in 10 months.

The bad news is that I have to carry 33 pounds around!

So, that's it so far! Feel free to write and tell me all about your exciting week so far!

A "Great" Outing

We decided to be brave on Saturday and take Victoria back out into the world again. "Great" (my grandma, the kids great-Grandma) recently moved to an assisted living place, so we thought this would be a perfect adventure. After all, lots of people there have wheelchairs just like Victoria, so she fit right in. We arrived just in time to have lunch with Great. She was so excited to see everyone. All the other residents seemed happy to see children too. 

We dined on country fried steak. I have never eaten it before. I'm not really sure that is actually steak. Of course, little Catherine didn't try it. She mostly ate from a tray of strawberries that is left for the residents to snack on throughout the day. I'm not sure there was anything left for the other people once she got to them. New situations tend to make little Catherine nervous.

Poor Victoria was pretty stressed out. I think she was afraid we were in some kind of hospital. She kept a wide-eyed lookout for anything suspect the whole time we were there.

A doughnut helped her a little. They always help me too! She still isn't eating much, but, of course, sweets are always acceptable.

I think we livened the place up a little.

or maybe a lot....

We love you Great!!!!

Please say a little prayer for Victoria. She is really having a tough time. She keeps waking up every two hours at night. I feel like I have a newborn again! Also, one of her incisions is infected and swollen, so the doctor put her on an anti-biotic. I think it is really hurting her. She is very frustrated with staying in a reclining position. She tries and tries to pull herself up. We try to carry her as much as we can, but she is heavy!

Hijacked

My friend, Kelly, asked if she could hijack my blog tonight. Today is Kelly's birthday.She just brought home her sweet daughter, Charlotte. While she was there she met a sweet angel with Aperts syndrome, just like Francesca.

 A lot of people are scared of adopting a kids with Aperts, but as a mom of two kids with cranio issues, I can tell you, it really isn't a huge deal. Francesca will only need one more surgery for her fingers and toes and then she won't need anything else done for 6 more years! Kids with Aperts are almost always cognitively normal. Little Kacey seems to be a little ray of sunshine! All Kelly wants for her birthday is to be able to find Kacey a home. I sure hope her family is out there reading this tonight.

Here is what Kelly has to say:


She begins her daily walk toward me, uneven and slightly halting, as soon as she sees the groupa room door open.

Before long, her arms are wrapped around my leg and she is looking up at me.

She doesn’t make a sound.  She doesn’t have to.  Her piercing blue eyes speak volumes.

When is someone coming for me?  Can someone love me, just as I am?

And then I wake, brokenhearted all over again. 

Kacey.

http://www.lovebringsyouhome.com/2012/01/occupiers-of-dreams.html

(This is Kelly's daughter, who is friends with Kacey)

At some point at the end of that first trip, Kacey stopped asking me if I was her mama.  Maybe it was hearing me respond “nyet” each time she asked.  Maybe one of her caregivers explained.  Maybe she just knew.  She simply resigned herself to being left behind—again.

On the second and third trips, Kacey would simply hug my leg and stare up at me.  I will never know what Kacey was asking for in those silent moments—but I will never forget how her body relaxed and melted into me when I would reach down and stroke her fine blonde hair.

She deserves love all the time, not just when families are passing through her groupa room.

She deserves comfort from a family while she recovers from surgeries for her Apert Syndrome.

She deserves acceptance and opportunity and a family to help her blossom.

Think about it.

Is she your daughter?

If you think she might be, please contact Reece’s Rainbow.

If adopting is not something you can do right now, please share this blog post and her picture.

Donate to her grant fund.  It only has $200 in it right now.

Please help me show Kacey that she isn’t forgotten—and that there is someone, somewhere dreaming of making her their daughter.

Share the love.

http://reecesrainbow.org/23041/kacey-15h

Entertainment

The days seem to be getting longer and longer. I am totally re-thinking not having a television. But never fear, indulgent mommy is here! While I let the older girls have a dance party and slide around in their socks, little Catherine painted her nails with permanent marker. Let me tell you, it is not permanent on fingernails. Good thing we like the color red.....on lots and lots of our other stuff.

I needn't have been worried about how Victoria would entertain herself while being stuck in a spica cast. She's a girl who can find just about anything interesting......including a grocery bag.

She cracked herself up throwing the bag up and down.

Good times!

Give Francesca some dishes to load and she is a happy camper for hours.

Francesca discovered that the casts were perfect for drumming on with the Tinker toy sticks.

Is it Friday yet? Talk to me people, I need some adult interaction!!!

New Normal

This week has been all about adjusting. I think it's going to take a while.

We've had the expected drama, though it hasn't been from the kid in the giant cast.

Life is going to be a tad bit different around here for a while. I have reconciled with myself that I may never sleep more than an hour at a time until Victoria gets her casts off. I don't blame her. I can't imagine not being able to move for eight weeks. However, if I have to sing the "ABC" song a hundred times at 3 am again tonight, Victoria won't be the only one crying.

Meals are taking a much longer time than they used to. Victoria will only take fluids if I syringe them into her mouth a teaspoon at a time. All food will only be accepted on her terms and her terms are subject to change at any moment. Don't even think about putting a spoon near her mouth. For lunch, she deigned to eat a nibble of a marshmallow peep. She has kind of regressed back to her "white food" phase. Tonight she ate three fork-fuls of mac and cheese (the white cheddar kind, of course). We all did the happy dance.

Though I am mostly a homebody anyway, we are really sticking close to home now. She is just so heavy to lift into the car. We took a walk today, but when the clouds threatened rain, I panicked. I remembered the nurses repeatedly telling me not to get the casts wet. Can you imagine the embarrassment if we didn't even make it a week in the casts without Victoria getting water logged?

Baths are not fun anymore. I heaved her up on the kitchen counter today and wrapped her in huge plastic garbage bags. I hung her head over the sink and dumped an entire bottle of conditioner on her tangles. Anyone have any ideas how to keep the back of her hair from getting so matted?

There are already benefits of having Victoria's hips in their sockets. We can finally cuddle and use the Ergo. Probably we can use it for more than two minutes once the 50 pounds of plaster and fiberglass come off. Definitely something to look forward to!