1000, baby!!!

I just reached my 1000th post on my cranio support group website http://www.craniokids.org/ and I realized it's been a while since I updated on my craniokid.


We are now 18 months out from her surgery. As I read stories from the new cranio moms, I remember all of the concern and worry we had as we first heard our diagnosis, did research and ultimately handed over our 4 month old to have her skull reconstructed. There are so many on our site that are "wait and see" that, as horrific as the surgery was, I was grateful for not having any choice. I remember praying, "God, please hit me over the head with the answer. I can't do this by myself". Now that we are this far "on the other side", as we like to say, I know that we did the right thing for her. You never stop worrying, of course. You're constantly checking her out: "are her eyes even?", "was this bump here yesterday?", "are her ears level?", "is the browline pinching again?" Florence looks good, even when I stare hard at her, looking for worrisome flaws. Her "soft spot" is hard and raised, but you can't see that because of her hair (yay! we're finally getting some hair, beautiful, curly, strawberry blond hair!) and the neurosurgeon at her one year checkup reassured us that was within the normal range. I read about kiddos that have extraneous soft spots remaining after surgery or other issues, and I feel so blessed with how Florence has done. Every once in a while, a behavior will rear its ugly head and you can't wonder if her brain is being affected. For example, she tends to get obsessed with something and lock onto it. For most kids, you might just say, she's trying to control her environment, but for a cranio kid, you are constantly watching for her brain to have room for what she needs and wonder if it's not being squished somewhere. I don't really think she's having any trouble, but like I said, the worry never leaves. We do have an appointment with her cranio-facial doctor in December - he's the artist who rebuilt her so I'm excited to hear what he thinks of her look.




Since Florence is the fourth kid, I have to admit, I have no idea if she is on target with her milestones or not. I haven't read a baby book since number 2. However, she seems to be smart as the dickens and is keeping up with her older siblings just fine. She talks constantly, and we are moving from the incessant babble to words that I can actually understand. She usually speaks "in sentences", but there is usually only one or two words that pertain to what she is asking about. But recently, she has started phrases like "I'm hungry", "I want a pamper", "Let's go car", "go outside", "I books" and "I watch Elmo". She really understands everything too, so if I have to occasionally translate what I think I heard, she'll listen and say no until I guess right, at which time she'll say "yay, books" or whatever. She's also learning her manners. If someone gives her something she asked for, (and she's in a good mood), she'll say "thank you, alex". If she accidently bonks your nose in one of her spastic jumps in your lap, and you start tearing up, she'll say "sorry, mom". And if she burps or hiccups, she'll cover her mouth and say "excuse me". And in a rare form of understanding, she'll say "excuse you" if you burp. She'll also "bless you" if you sneeze. It's all adorable. She has been able to say the names of her siblings for some time. She even calls dad either "honey" or "tony". But she has just this week started saying her own name when you point her out in a picture - she used to call herself baby. It's not quite right, but I can hear it, and I love it. It's the sweetest sound. The picture above is all the AZ girl cousins in their matching dresses that Aunt Kathleen bought them.

She is acting like a typical almost 2 year old. She can be SO stubborn, and I'm really having to remind myself not to give in to everything that she wants just to keep the peace or just because it's easier. She is the baby, and she is rotten to the core, but I want her to learn how to share and play well with others. Here's a picture of her playing kitchen with her baby girl cousins. She loves playing kitchen. She also loves to play/talk on the telephone. In fact, she found an "old fashioned" phone with a cord in the laundry room and I kept catching her in there making calls. And at the store yesterday, she saw a play phone on the toy wall, and I tell you, it was the best $4 I ever spent, my entire shopping trip was "fit-free" after I grabbed that for her (see, rotten to the core!). Only problem so far is that the babysitter put her to bed with it last night and I woke up to "phone sounds" early this morning. She is an early riser. No matter what time we put her to bed, how many room darkening devices, she likes to get up early. Poor Lucy doesn't feel like she gets enough sleep.

She loves dancing. I can offset just about any tantrum by putting on some good music. She has some great moves of her own, and will copy anything she sees you do. Even if you're just stopping to chew your fingernail, she thinks that is a step and she will put it in her repertoire. When she hears music at the mall or the elevator, or anywhere, she says "hey mom, dancing!"
She's also really getting into books. Her go-to-bed book is "Dinosaur's Binket" by Sandra Boynton. The story tells of a dino who can't go to bed without his binket and in between the poetry he yells "where's my binket". Florence reads all those parts - yes it's more like "a binket!", but still, she knows to wait her turn to come in. She also loves the lift and peek Elmo books. Fortunately we have tons of those because Charlie also loved Elmo lift and peek books. (It's so funny to think how he's so obsessed with complicated video games now when such simplicity used to make him happy!)



Her favorite movies are Toy Story 2 (not TS 1!), Lilo and Stitch, Curious George and of course, anything Elmo. We tried watching Little Mermaid, but she kept crying at the part where the ship burned down and they had to leap into the water..."poor doggy, poor, poor doggy!" She did, last night, specifically ask for Bear in the big blue house, which I was excited about...not just because I love Bear, but because it was something new. Here's a picture of all the AZ cousins at Patricia's birthday party.


We have postponed potty training for now. She appears ready, and I hope I don't miss my window. But when I tried, she just kept holding it and following me around asking for a pamper. And since I have my surgery next week, I didn't want the training to fall into my mom's hands (as tempting as it is to get someone else to train your child) or to fall by the wayside. I figure we'll maybe start after the holidays are over so that I can do all my shopping chores with worrying about finding the potties.



We had two birthday parties in September. One for her cousin Elizabeth, who is 9 now. They all came to our house for a family party. Since Elizabeth is getting to be "that age" where parties aren't as cool as, say, a Jonas Brothers concert - we had to throw one so that her cousins would get to celebrate with her. We also celebrated her cousin Patricia's 2 year old party. I helped Ginny make her Elmo cake for her party. We also had and Elmo pinata. I was concerned what the little girls would think about bashing open their favorite tv friend, especially when the older kids started batting his disconnected head around the backyard - this adventure led by Uncle Joe. They ultimately seemed unphased by it, especially since it led to the wide scattering of candy.







So now it is October. We haven't decided yet what she will be for Halloween. I have a dallas cowboy cheerleader outfit that would fit her, but also a leftover Clifford or giraffe. She probably doesn't really care one way or the other, so we'll just have to decide. I do think this will be the year she "gets" what Halloween is all about.


Please do visit our family website to catch up on the other kids. Follow the link to the right...