Florence Kathleen's Story

2010-09-23T09:50:00.000-07:00

Wow. It's been quite a while since I updated Florence's blog. I laugh when I see the Twinkle video because she has come such a long, long way since then. She is now 2 3/4, and she not only can sing that song all by herself (and does, quite regularly), she also sings ABCD, Itsy Bitsy Spider, Goodnight Florence (Goodnight Ladies from Music Man), the Wonderpets theme song, and much, much more. Her language skills have really come along - she is as articulate as my 5 year old. We really have to be careful what we say about her since she will repeat it - and usually in the same tone. It's kind of scary to hear sarcasm so clearly in a two-year old.

She is now 2 1/2 years post-op, and to me, is smarter and more beautiful everyday. While she does still have a lumpy head in some places, her forehead has really smoothed out. She still has a tiny line along the right side where they moved her metopic ridge during the surgery, but it's barely noticeable. We will go to visit her neurosurgeon next, but since she's only yearly visits now, it won't be until somewhere in January or so. We'll have to chase him down since he has moved from Phoenix Children's Hospital where we had our surgery to Cardon's Children Hospital here in Mesa (Yay! A specialist here in town!). In the meantime, we are very pleased with how she looks and, more importantly, how well she is developing and meeting all her milestones.

She is now, for all practical purposes, potty trained. She makes it through nap, though I still give her a pamper to wear at night, mostly because I don't want to have to get up in the night to change sheets. Her cousin who is close to the same age actually gets up in the night to pee, but I don't see Florence doing that yet. My kids sleep too deep. In fact, we are still waking the 5 year old up before we go to bed to make sure he stays dry. Florence just moved into her big girl bed. When Grandma was visiting, she helped us get some bunkbeds for the girls to sleep in. We opted for the full on the bottom so that we could easily accommodate guests and Florence looks tiny sleeping in that big bed. She absolutely loves being able to get herself up when she's done sleeping - me, not so much. The sun is still coming up pretty early, so she wakes up early. Fortunately, she does seek me out in bed if I'm not up already rather than go to the kitchen and make her own breakfast. It probably just hasn't occurred to her yet. She has also enjoyed coloring, but now she likes it so much, she'll do it for hours if I don't interrupt. The peace and quiet at home and the calm at our various activities (karate, doctor visits, etc) make the money I spend on Elmo coloring books totally worth it. She still scribbles, but you can see that her scribbles follow the lines of the pictures.

She loves to read books. In fact, I'm attaching a video of her "reading" her favorite book "Let's go Hippo". We videotaped it to give to her cousin for her birthday. But Florence got a big kick out of making the video and especially enjoys watching it. She is her own biggest fan.

Twinkle twinkle

2010-02-18T14:18:00.000-08:00

Florence loves to sing. Here she is singing one of her favorites: Twinkle Twinkle little star with a little help from mom...

Happy Birthday Florence!!

2009-12-06T06:10:00.000-08:00

Florence is officially two. Granted, she adopted the "terrible two" behavior about 4 months ago, but now we're into the heat of it. Truthfully, she can plank out and throw the best fit of anyone I know, but for the most part, she is sweet and smart and funny.

Her language skills have exploded the last few weeks. She is really starting to build sentences and use her words more for communication. Sure, a lot of her phrases are of the "terrible two" variety: "I don't want it", "give it back", "leave me alone", "stop it" or my latest favorite "I'm not talking to you!". She copies everything she hears in case it can come in useful later on. For example, after my dad was visiting over Thanksgiving, she kept saying "I need another beer." But for the most part, she really understands everything and knows what she wants. She's specific about breakfast meals, she knows what she likes at McDonalds (I want cheesyburger).

She is very affectionate. She's adopted Alex's request for "huggies" everytime one of us leaves to go somewhere, or when she's sad, or in the middle of dinner just because. She also occasionally asks for "kisses". She gives sweet kisses with a very relaxed face, eyes half closed and mouth coming slowly towards you...I think Grandma let her watch too much "All my children" while she was visiting.

Her birthday was on Thanksgiving this year. We decided to have a separate party for her on a different day - after all, who wants Elmo cake when there's pumpkin and pecan pie. We gathered all her cousins at our house on Saturday morning and had Chick-fil-a and birthday cake. We even did a little surgrey on last year's elmo pinata and were able to reuse it. Last year, everyone pulled the little ribbons to open the candy door. This year, we used the bat. She got lots of wonderful toys. I think her most favorite has been the Magnadoodle. She had been carrying around one of our old nasty ones for weeks, so I requested a new one from one of her aunts. Even though she has to fight Alex for it sometimes, she loves to play with it. She also got some new Mr. Potato head parts (this one is Alex's favorite!), some new Ariel pajamas, an Elmo shape see-n-say, and a new big girl pillow. Very spoiled. The weather was beautiful - there's not too many places you can have an outdoor party in November, but here, it was gorgeous. Everyone had a good time climbing on the swingset and the dome climber, drawing with sidewalk chalk and just hanging out.

We saw both her pediatrician and her cranio-facial surgeon recently for appointments. Both are very pleased with her progress. She weighed 24.5 lbs, and was 35 inches high. According to the ped, she is hanging onto the 25% in weight and nearly 75% in height. She does have a little bellybutton hernia that we are watching, but they won't make any decisions about that until she is 5. Her CFS thought she looked beautiful. All her skull has filled in the way it's supposed to and while she still has some bumps, those will continue to smooth out as her skull continues to thicken. But the main thing is that she is on track developmentally and that her brain has plenty of room to grow. At this point, we only see the doctors every other year until she is 5. Yay.

1000, baby!!!

2009-10-14T06:05:00.001-07:00

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...

August 2009

2009-08-14T06:06:00.000-07:00

The older kids have gone back to school and I'm at home with just Florence and Alexander. Florence is well into her "terrible twos" even though she is only 20 months. She can throw a tantrum that can be heard down the block. However, she is also capable of being the sweetest most nurturing little thing. Whenever her siblings or cousins get upset, she tries to hug them or rub their back. She's really into giving kisses too. Her smack is not quite there, but the pucker is adorable.

Florence's language is really coming along. She must've picked up close to 100 words at Grandma's this summer. She's always been a great babbler, but now she's really trying to put actual words together and form tiny sentences, especially ones like "that's mine" or "give it back!" She repeats things back a lot quicker and more readily now as well. There are still a lot of words that I know that wouldn't be obvious to someone else, but it is becoming easier for others to understand her. She loves to call for me and say "Moooooooommmmy, whereareyou?!" Since she's #4, I'm not quite on top of milestones, but she strikes me as right on target verbally. She's extremely observant and copies everything she sees. She knows almost all her body parts and can say most of the words for them. She appears to know the color yellow, but she's not consistent enough for me to know for sure.

She slept wonderfully on our vacation. I was worried about that because she was generally uncooperative about sleeping anywhere but her bed, but she did well. For the most part, she always slept through the night. Lately, she's been waking alot. I think she might be trying to cut a few more teeth, but I also think she might be having nightmares. The other night, I went in to her, and she was still sleeping, but was calling out to her oldest brother: "Chaaaarliiieeee" - it was really kind of sad. I couldn't tell if she was afraid for him, or if, in her dream, he was doing something to her.

We're going to attempt potty-training soon. She is very aware of going and always asked to be changed as soon as she's gone. I'm hoping she can learn to tell me before hand. It would be so nice to be done with diapers, but I also don't want to be the one that's trained. I'm planning on rolling up the rugs next week. We'll see how it goes.

Her favorite toys lately are the baby dolls with their stroller and crib. She put her baby to bed no less than 20 times the other day, tucking her in, giving her the pacifier (papoo), covering her up, and the whole time talking to her about what she was doing. It was adorable. She'll stroll that baby all over the house with her and love on her, rubbing her back and giving her kisses. It makes me feel good cause odds are she learned this loving behavior from me. It's nice to know I'm not always a screaming lunatic.

She's still a tiny thing. She eats well...when she wants to. One of her new phrases is "I'm full". If she doesn't like what we're having for dinner, she'll push her plate away and say that. She's very active though, so I suppose I shouldn't worry. And she is FINALLY getting some hair. It's red, like Alex's, very strawberry might be a better description. It's quite curly in the back as well - it would look long if she didn't have such boingy curls back there. When we were back east in the humidity, it was especially springy.

Happy Cranioversary Florence

2009-04-28T20:23:00.001-07:00

Florence had her one year check up this month with her neurosurgeon. She passed with flying colors of course. The doctors are going to watch one area of her forehead carefully to see if it continues to smooth out, but are otherwise pleased with her progress. They wouldn't do anything until she was 5 anyway, but I figure unless it's something seriously visable, we won't subject her to any more surgeries. Her scar is barely visable, and once she has some hair, it's not likely to show at all, I hope. It's hard to imagine that a year has already passed. Just one year ago, I was thinking of running away with her rather than allow them to take her from me. But she is doing so well, we have no regrets. Here she is with sister Lucy in their cutie matching sweaters.

Physically, she does just about everything the older kids do. She climbs on the couches, the outside playset (she bats my hands away when I try to help) and has even figured out how to drag the kid chairs over so she can reach things. Here she is on a playslide out in the backyard.

She talks all the time. You can't understand her, but it's very conversational and she is CLEARLY trying to communicate something to you. Most often in the shape of a question. She throws a mean tantrum when she doesn't get her way. I'm trying to stay on top of these. She's learned how to bite and scratch, and will even bite herself to make a point.

She loves balloons, and balls and baby dolls. She LOVES music. Very often I will catch her in with Charlie while he is practicing his violin with the taped accompaniment, just dancing and twirling and bouncing. It's adorable. I have videotape, I just have to figure out how to get it on here.

It's been an incredibly busy month with my birthday (the big 4-0), Alex's 4th birthday, Easter, and Charlie's first Communion. Stay tuned - I'm hoping to update and post pictures of all of them.

Almost 40....

2009-03-27T20:45:00.000-07:00

I'm a terrible blogger. I guess I keep waiting until I have some time to sit down and be creative. Pretty much, never. I finally finished a huge recital yesterday. Tuba. Somehow I've become the go to person for the low brass accompaniment in this town. You know what they say, though: "Find something no one else wants to do...." Anyhow, the recital went really well. This was a Masters Recital over at ASU. Previously, I've only done competitions and juries (well, one recital) at Mesa Community College, so this was like big leagues for me. I got called because no one else would play this piece. Truthfully, when I agreed to it, I thought I had already played it. Stupid, stupid...never agree to music over the phone, and never quote a price until you know what you're doing. I learn something new everytime. I did work really hard on it, and I feel like my chops returned, but since it's been so long since my days of 2-3 recitals a week, my nerves are not quite what they used to be. More of a wet pasta than the steel of a few years back. But it went well, I got many compliments, and already one of the teachers from MCC wants me to help him make a tape. Doors are opening...

Back in February, I threw a Mardi Gras Party for my MOMS group. This set off a string of Kings Cakes. King cake is actually a bread, so I got some good use out of my bread machine. I even hid the baby inside. I also found that it is such a southern tradition that even my friend from Georgia didn't know what it was. It's primarily a New Orleans thing, but since Mobile claims Mardi Gras as well, we knew about it in Alabama.

The kids are doing well. We're managing to fend off most of the winter illnesses. Except for a stupid stomach bug that keeps making the rounds in various extremes. Charlie's my carrier. He gave it to me and I was so bad off Tony had to take off work. Now Charlie's got it again, though it seems more mild. But after visiting my friend in the hospital with her baby who has RSV and pneumonia, I'll take our little "crappy" illnesses.

Charlie is doing very well in violin. He's getting good praise in orchestra too.He's so diligent about his practicing, and I love to hear him all the time. He's been funny about listening to me practice - "Why do you keep playing that one part over and over?" He usually just plays everything through and calls himself finished. He is doing well in karate as well. He got his green belt a few weeks back and even one two medals (2nd place) in a tournament last weekend. I was proud of him. I've started letting him walk to school by himself on occasion. He likes to play wall-ball with some buddies before school, so if he does all his chores and practice, I'll let him go a little bit early. Of course he has to pass the quiz before I let him out the door: "Do we talk to strangers? What if someone is looking for a puppy? What if they offer candy" I try to get creative, but he knows the right answers. I don't worry too much since it's only down the block and I'm ususally 4 minutes behind him. But I did cry that first day, but Tony said it was ok, he was old enough.

Lucy has been cleared by her doctor for all activities she wants after her broken arm incident. She is still lacking just a bit of flexibility in her elbow. Her Dr explained this is because her arm bone, in healing, filled in a divit that is naturally there to allow the arm to fully bend/extend. As she grows, the divit will return. Isn't that interesting?! It's this same divit that makes that area a common break in kids. Lucy has also turned 7 in the last few weeks (ha, month). She had a little birthday party with all her little girlfriends. They came over for "tea" and an afternoon of glamour with makeup, hairstyling, and fingernail polish. It was hysterical to see all these girlie girls together. Her favorite gift was from her daddy....a geniune ipod - yes, an older model bought off of Craigslist, but one with a screen that plays movies and all the Soundtracks to High School Musical movies.

Alexander is doing Kindermusik again. It's been a slow start, but now he actually goes to class with a few other kids without me. Florence and I hang out in the lobby until he's finished. It's so big boy of him. He's been so patient with me as I was preparing for that recital. He about knows every movie we own by heart, poor neglected thing. I would try and have a few outings. Here we are feeding the ducks at a nearby pond. Florence loved this to, but she seemed determined to find her way into the pond, so it wasn't as nice for me....much chasing and screaming....from both of us.

Florence is approaching her one year "cranioversary". It's hard to imagine that this time last year, I was afraid to put her down because I wanted to hold her as much as possible. And now, she is such a stinker, and so independant. She pulls chairs over to reach things, she is starting to say new words everyday, she knows many of her body parts, and OH, she loves to dance. She can't hear music without bouncing and twirling. Here's a pic of her getting ready for bath...I used a far away one so it's not obscene, but if you look over her shoulder, there's her papoo hanging from her dress. She's a funny girl. She loves making people laugh, and I can't help it when I watch her tiny dimpled butt run around the house.

So there we are. You probably won't hear from me again until after Easter since I'll be at church everyday that week. But by then I'll have made it over the hill. I'm planning on dinner with Ginny and Eileen and their husbands (and mine of course) that night, but I'm saving my big party for after Easter. Who wants to have a party when everyone's given up desserts, alcohol, etc.? I gave up dessert....the pounds should've been falling off of me as I usually have something every day. But no. I'm the only person who can have a 48 hour stomach bug and still not lose any weight. I give up!

Happy New Year and a little bit....

2009-02-05T11:26:00.000-08:00

January 28, 2009

Dear all,

I’ve been wanting to write a letter updating everyone for a while, but time is just not my friend. As it is, it’s almost February, some of my decorations are still sitting out, even if they’re not “displayed”. But since Dad’s letter writing of Christmas just came, ok, several days ago, I felt inspired again to write. My inspiration this morning comes from a book I’m reading called “The Hour I first believed” in which there are extremely detailed letters of a young girls’ visit to Mark Twain’s house. I realize that I’m reading fiction, but the amount of detail that went into that letter was impressing and amazing. It had its own chapter and contained so many elaborate details of venue, environment, food and dress, and it embarrasses me to think I will try and include enough info to be informative and yet, small enough not to clog up everyone’s email….

We had an extremely busy Christmas Eve. As usual, I played a great deal at church. I had told Mark (our director) that I would play every single mass on Christmas Eve if it meant I didn’t have to show up Christmas morning. He had already asked me and the kids to come to the 4:00 Children’s Liturgy, since he is new to this job and doesn’t have the Catholic School connection that Jaime had, he was short on kids for that service. We normally have this one outside, but for once, Phoenix weather didn’t comply and we had to plan to put our masses back inside. This meant splitting them in half since our sanctuary is not prepared to handle everyone who only comes to mass twice a year. I was glad to help, but I was disappointed that Charlie and Lucy’s first year in the children’s choir would be without me there to witness it. As it turned out, they delayed the start of the second mass so that people had to time to wander in to church, not find a seat there and cross back to the hall. That meant I got to accompany Charlie as he played “O Come Little Children” on the violin as prelude music. I was so proud I thought I was going to burst – he, of course, was really laid back about it, no big deal. Lucy was also feeling vulnerable because of her arm, so she accompanied me to the other service and sat next to me at the piano and sang. By the time I got home at 2:00 after midnight mass, Christmas was laid out, Santa had come and gone and everyone was asleep in bed.

But Christmas day was great – nowhere to be, no specific time to finish, no work – all in all, a great day. I joke that Tony and I did our part to keep the economy afloat. With all our talk of cutting back, including our substitution of ornament making and cookie baking with our friends and neighbors in lieu of exchanging gifts, the kids still had tons of gifts under the tree. I desperately tried to stay away from video games as the gift of choice, but Tony did find a creative way to give the gift of electronics: two sets of bongo drums and the video game that accompanies them. In this game, Charlie and Alex (or sometimes my neighbor Tricia,) compete to properly accompany a song on the video game by tapping the correct drum at the correct time according to a series of colored circles flashing on the screen. It’s fun, if not a little tiring, and certainly noisy. Even Florence likes to get in there and dance if there’s not a drum available for her. The boys also got some outside toys – a pogo stick for Charlie, and a “big boy” scooter for Alex. I have to say the pogo stick hasn’t gotten that much use, but a lot of that is my fear from more broken bones after Lucy’s accident. Lucy’s primary gifts were extremely girly – a Barbie head for her to fix hair, a kit for braiding, crimping, and beading extensions that you would then clip into hair, and her favorite, a pretend espresso machine so that she can serve coffee/hot chocolate to all her friends and family. The hair toys are sitting quietly waiting for her to get her cast off so that she can have both hands available, but she and Alex play “Starbucks” nearly every day. Florence didn’t care much about opening presents, but she did get a few things she likes to play with – her own cell phone and this magnet play set for the fridge that talks to her and makes animal sounds. I envisioned her playing happily with this while I prepared dinner in the evening, but mostly I just keep retrieving the parts out from under my feet and shutting down the stupid Old MacDonald song. My big gift was an I-Pod Touch. Tony had bought me, several years ago, a really nice 2G MP3 player that did music, photos, videos, etc. I enjoyed it and got great use out of it as Alex watched movies on it during my many OB visits when pregnant with Florence. Well, I helped my neighbor research ipods for her daughter’s birthday and was surprised by how they’d come down in price, so I asked for one for Christmas (8G, please). Well, I had given up since he told me he spent my ipod money on my driving school course I had to take to keep a ticket off our car insurance (you can’t pass even a street sweeper in a school zone!). He told me I couldn’t just go hot-rodding around town (16 mph in a minivan) without consequences. But he surprised me with the Ipod Touch (16G, yay!) and it can do everything – even check my email and get on the internet as long as I’m near a wi-fi. It’s so cool. In fact, it’s so cool, he bought himself one for his birthday…32G of course, because his has to be bigger and better. That, and he got a good deal on Craigslist.

Charlie has gotten to join the orchestra at his school this semester. It’s not exactly what I imagined for him – a place to make music with his peers and make new friends who had something in common besides wall ball and video games – pretty much, we get there at 7:30 in the a.m., I help the teacher tune everyone up and by the time he finished roll call, it’s 7:45 and they have 15 minutes before he dismisses them to class. Knowing this, it’s not surprising that he figured after only 6 months of private lessons, Charlie would belong at least in the intermediate class if not the advanced. He also continues with his karate twice a week. In school he is doing very well, except for handwriting. I waver back and forth about how important this is to me. On the one hand, every genius has notoriously bad handwriting; on the other, sometimes I don’t even grade his homework because I can’t tell what it says!

Lucy’s broken arm has hardly slowed her down. I have to keep reminding her that even though she feels better, running and monkey bars are out of the question. We took a hike on New Year’s Day and she had no trouble making it to the top of Hayden’s Butte despite the fact that I kept fussing at her to slow down and be careful. And despite the fact that I threatened her about the playground after we found sand in her first cast, she still comes home covered in it. She looks cute running around in her hot pink glittery cast, and it’s going to seem weird to see her without it after we get it off next week. Gosh, time has flown. We’ll still have to see how long it will be before she can return to normal activities, but I know gymnastics is off the table at least until the fall. Her birthday is coming up and despite the fact that she made out like a bandit at Christmas, it hasn’t stopped the begging for birthday plans. She lost one of her front teeth. It has really changed her face.

Alexander thinks that because Joe Leo has turned 4, that he must now be 4. After all, they were always the same age, right? He wonders why he hasn’t had a birthday party. But if we try and explain it’s later, he still asks, “you mean, right now?” – he just isn’t getting the whole calendar thing. He loves his scooter he got for Christmas and he is also getting good at driving the jeep (even with Florence buckled in) and he is also learning to ride Charlie’s old bike. It does have training wheels, but they are so off-kilter that half the time they don’t touch the ground because he doesn’t like how the leaning feels when they are. I figure if I get him outside everyday, I could definitely take them off by this summer. I think Lucy was only 4 ½ when she did it. He and I are still going to Kindermusik classes. It’s a lot of motion and dancing and rhythm repetition and playing on instruments. The only part I don’t like is the CDs that were part of our kit. Two CDs full of songs, some of which are ok, but most of which are sung by “trained” children who sound so unnatural, it’s creepy. There’s also all the synthesized music they attempted to make sound like real instruments, down to how they record several string instruments, making them just slightly out of tune with each other. And the sound effects…well, don’t get me started.

Florence finally started walking on Christmas day. We had seen the signs it was coming. She would let go of things here and there and take a few steps. Then that day, she just quit crawling. And when she’d fall, she’d get right back up. We were so happy. Of course, the few bonks she got were right on her forehead where her surgery was. But now she is pretty steady, learning to navigate stairs here and there where she meets them – even treating the step off the patio and the seams from grass to driveway as a step, getting down on all fours and putting one foot at a time on the new level. She loves to do what the other kids are doing, which drives them crazy. I’m constantly being asked to remove Florence from whatever blocks, legos, or games they are playing. Her favorite toy, besides Charlie, of course, is a pretend cell phone. And from the moment she learned to walk, she has paced the kitchen with the phone to her ear chattering away. She babbles all the time now. Other than Uh-oh, she still doesn’t really have discernible words, but her babble is extremely conversational with ups and downs, pointing and pauses so you can respond. It’s really amazing. She’s also really stubborn and totally understands the word no. She can throw a big time fit, but she’s still easily distractible, thank goodness. She also is currently healthy for the first time since Thanksgiving – it has really improved her nighttime sleeping – she goes from about 7 until about 4:30, when she’ll wake up to eat and then go back to bed. I finally put away the little crib in my room. She enjoys going to the nursery during church time and pretty much eats anything we give her. Tony and I are beginning to see the light at the end of the baby tunnel.

By now, you all know about Tony’s new car. The accident in early January totaled the Sentra, which wasn’t difficult given it had 160,000 miles and was 11 years old. The thing that put its value where it was were the new tires and the nice stereo I installed for his birthday last year. So USAA is “buying” it from us and we bought a really nice, almost new, Civic Hybrid. Tony’s first choice was something cool and fun, but after doing a little research, the MVD convinced him that if he bought a used car that already had an alternative fuel tag, they would transfer it to him so he could use the HOV lane to get to work. Well, in true government fashion, after being reassured by no less than 5 people that it would work out, when he went to do it, they wouldn’t let him. I expected him to turn around and trade it in for a VW Bug convertible he had his eye on, but he’s keeping it. We’re hoping that perhaps our new governor (because, as you know, Napolitano defected to DC) will find a way to expand the program or make it work for us. I even wrote her a letter. It’ll no doubt get lost in the shuffle with all the letters she is receiving on planned cuts to education funding, but I had to try. Maybe she’ll be happy to take on something she can actually solve to someone’s satisfaction. But in the meantime, we’ll have to be happy with our financial savings in gas mileage, as we watch gas prices climb back up. That and the fact that Tony is no longer commuting in a car destined to break down.

My projects lately included putting together a photo album for Tony’s birthday. I collected all the “professional” pictures in one album from our history as a family. It was so much fun to see how the kids have grown and to see how much they favor – those Horn genes run deep, I tell you. Alex kept looking at pictures of Charlie and wondering if that was him. I also dug up all our Christmas letters, so it was neat to read the highlights of each year too. My other projects include getting the house ready to host two gatherings this week. Tony and I will host our bi-monthly Marriage Encounter meeting on Tuesday and I will host a Mardi Gras theme party for my MOMS group on Friday. I’ve put pressure on myself to do extra dusting and cleaning, hanging curtains over the kids toy clutter “closet”, organize pictures that didn’t make it into the album into frames, put batteries in the clocks that are dead…you know, the stuff that doesn’t really matter if you have good food and plenty of wine. I’ve also been working in the yard. We planted winter grass in the front and now I’m trying to keep it from dying. I always love getting the yard together, but I have the worst time “maintaining” it. I planted flowers in the beds out back, but they died during the one freeze we had in January. There’s the back lawn which I deliberately allowed to go dormant for the winter; however, the weeds don’t know the meaning of the word dormant. They creep underneath the alley wall and are thriving. Even the weed killer I put down doesn’t seem to be helping. I should just put down Astroturf and plant fake flowers and be done with it.

Christmas loometh

2008-12-02T19:32:00.000-08:00

I can't believe it's December already. This year has just flown by.

Florence had her one year old checkup today. She "passed" with flying colors, though, bless her heart, she is still too small to face forward. She only weighed 18 1/2 pounds. It's not for lack of eating - she's been pigging out and especially enjoying the whole milk we're giving her now. Oh well, we are reluctant to give up the little carrier seat anyway. It's so convenient, especially when she falls asleep in the car.

We are trying to get ready for Christmas. I got some shopping done, but there's still so much to do. We don't even have our tree up yet. I keep telling the kids I am not decorating a dirty house, but that doesn't seem to inspire them to help me clean. We're all so busy between daily chores and committments that we can't seem to find time to do anything extra. Hopefully this weekend will find us decked in green and red and at least a few twinkle lights.

Happy Birthday Florence

2008-11-28T06:48:00.000-08:00

My baby girl is now one. This year has gone by so fast. Nothing makes time fly like a baby. We celebrated her birthday on Tuesday evening surrounded by extended family who are in town for Thanksgiving. Because it was a work day, we had it in the evening. She held up pretty good; however, she started breaking down right around the time we had cake. We went with an Elmo theme, not that she really cared - but she does recognize Elmo, so I got some Sesame trinkets to decorate her cake with and an Elmo pinata.

She continues to be a tiny peanut. At a Dr. appt last week, she weighed less than 18 1/2 pounds. Unless I can really fatten her up, she won't be able to face front in the car seat. We have another checkup this upcoming week, so we'll have another look. Truthfully, I'm reluctant to give up my pumpkin seat anyway. It's so convenient for if she falls asleep in the car or if she needs a place to be contained at church or Kindermusik. She isn't walking yet, but the last few days, she has really made progress with her balance, standing unaided and also making people walk her around holding her hands. No steps on her own yet, but it's just a matter of time. I have mixed feelings about this - on the one hand, I hate having to constantly clean her knees and hands because they get so dirty crawling around; on the other hand, I want her to be a baby as long as possible. Her only real word is "uh-oh" which she loves to say every time she drops her cup - repeatedly. She babbles constantly, but doesn't really use words for anything else. We're trying to teach her some sign language, but I can't remember much myself, so we've only done milk, bath, and grape. I think she does bath - it's hard to tell.

In other sibling news, Charlie's doing really well with violin. He's even going to learn a little song for the Children's Christmas Mass - talk about pressure...on me, that is. We really like his teacher - she is very enthusiastic and playful. At first, I thought this might not necessarily translate into a good teacher, but I really think she is doing a great job.

Lucy will be turning cartwheels for Tempe Parade of Lights again this year. Again, I don't really want to take the trouble to go, especially with so much family in town; however, last year we had such a good time, I know it will be fun. It was after marching around this parade last year that I went into labor with Florence...now we'll be taking her with us in person.

Alex is enjoying Kindermusik. We drive around listening to his CDs in the car...the overproduced, overarticulated silly children's songs with their incessant sound effects for EVERYTHING.

My parents, my brother and his wife, and my sister are all in town for Thanksgiving holiday. Through the week, we've been doing our normal stuff - eating at Moe's after church on Sunday, grocery shopping, gymnastics, karate, etc. We ventured out to a movie on Wednesday - Bolt - which was so cute. There were many laugh-out-loud moments, and the animation was, of course, Disney perfection.

Yesterday, we all gathered at Eileen's house to celebrate. There was tons of food, of course, and fortunately, the weather turned out gorgeous despite predictions of rain showers for the day. It was too muddy for the kids to play outside much, but Eileen had bought little crafts for them to do and somehow they occupied themselves nicely coloring placemats and glueing turkey crafts. Dad and the boys all watched the Dallas game, which we won, and then we all retired home for post-dinner snacks. After we got the kids to bed, Tony and I along with my brother and his wife watched Tropic Thunder, which I've really been wanting to see. It was hysterical, over the top offensive, and just plain funny.

Today, we're planning to head up to Rawhide - a country/western town just south of Phoenix. Hopefully the weather will hold out for us, it's suppose to. Then, hopefully this weekend, we will start decorating for Christmas. Everyone here really goes over the top to decorate for Christmas, I guess compensating for the lack of winter weather. Since Thanksgiving was late this year, we want to make sure and get our time in.

Sneaking into fall

2008-09-13T19:35:00.001-07:00

I have a small window where all but the baby are out, and I thought I’d try and update our blog and write a brief letter to update everyone. I always feel so guilty when all the letters come from dad, but the latest was when he took responsibility for chronicling our visit knowing that it was likely I wouldn’t do it – that was just embarrassing for me.

School has started – we’re approaching week 5, believe it or not. I breathe a huge sigh of relief at now only having two kids at home to care for, at the same time shedding a tear that the only two capable of real conversation or game playing have left. Every week, I have tried to fine tune our schedule so that we are not frantically trying to get somewhere on time all the time, but the bottom line is that with four kids each doing their own thing, until one of them learns to drive, my life is just going to be crazy. We are still easing our way into the school year, adding a new event each week…so far so good.

Charlie is in 3^rd grade this year. We celebrated his 9^th birthday at Ginny’s house – having an August birthday continues to be a bonus when you have a relative with a pool, and Ginny has been so generous to host us. She has even offered to invite some of his school friends, but at 9, inviting his friends would mean inviting their parents and between our family, Ginny’s family and Eileen’s family, we feel like he is properly celebrated without adding any extras. I made his birthday cake this year – yet another video game theme (third year running) though I returned to a homemade cake this year, inspired by Kathleen and her homemade petshop cake for Kinneely’s bday. I even made the frosting from scratch, though I had to then make Charlie his own cake since he can’t have butter or milk. I kept it simple, made it colorful and bought Pokemon figurines from Walmart to slap on the top. DONE! He continues to be addicted to video games, and I continue to be unable to control them. But for his birthday this year, I requested all board games. He loves the game of LIFE and will even shut himself up in his room (small pieces just begging for Florence to choke on) to play by himself. I like this game, though it is complicated enough that we have yet to play without the instructions. It’s teaching him about money, though some of the actual LIFE lessons are unrealistic: automatic pay raises, going to college earns you a higher salary, houses will automatically sell for higher than you paid unless you buy a mobile home (…ok, that one is realistic), and children contribute to your retirement fund. He expressed an interest in violin at the beginning of the summer, thanks in part to some neighbors who happen to play string instruments. I tried to talk him into viola, but he insisted on being in the “dime a dozen” category of instruments…well, if you don’t count pianists. Anyhow, I started him myself, drawing on my years of playing; however, I recognized my limitations to actually teach the instrument – not knowing what skills could be polished later on verses which ones needed to be perfected from the earliest days to prevent technical problems down the road. So we have been auditioning teachers. We have found two that are great, but now we are trying to decide which to make our permanent home with. In other Charlie news, he continues with karate. He will take his test for his green belt in October – this is the next step up from the orange belt he has now. It’s not as active as soccer or baseball (actually, we got tired of standing around waiting for someone to get a hit in that sport), but I love that it is inside (AIR CONDITIONING) and I’m hoping it will teach him how to control his body so he’s not just a bundle of spontaneously flailing limbs all the time. He will make his first communion and confirmation at Church this year – here in Phoenix, they’ve reinstated the whole “8 is the age of reason” thing – whoever decided this doesn’t know an 8 year old. The only way I could get him to sit still in church and not play with the baby is to take away video games for a week until he “earned it back” by paying attention in mass. We’re still working on the participation part. However, I’m constantly getting comments from the congregation on how great my kids are during mass – they know they’re mine since Tony sits in the front with them, and they all troop up to give me kisses during peace time. Charlie recently had a checkup with his ENT and he has recommended a visit to an allergist. We’ve been doing the nasal rinse and a daily Claritan, but it just isn’t helping and the ENT is concerned with some tissue swelling and growths inside his nose. So hopefully we will get some answers that will help my little sneezy, coughy boy.

Lucy is in first grade this year. She started to learn to read last year in Kindergarten, but has really crossed a line this year from sounding out words to reading sentences. I remember this from Charlie’s 1^st grade year. It’s like, one week they can’t read, the next week they can. She’s still slow, but every day she reads a book to Alex and he is minimally patient with this. We’ve started back to gymnastics. She is older and more experienced than most of the kids in her class, but I wanted her to start slow so she could get back into shape after taking the summer off. After the Olympics, she was bound and determined to become an Olympic gymnast; however, she is not the type to put in the work required, so we just are back to going for fun. She will, hopefully, move up to a more advanced class soon. She is fun to watch at school, such a social butterfly with a slightly bully edge. In other words, she holds hands with her little girlfriend on the playground, but mostly so she can yank her around where SHE wants to go. And the first week of school, I had to talk to her about being sensitive to others’ feelings when she and her friend took a “vote” about whether or not a new girl could join their group. Shouldn’t I have another few years before I have to deal with that? At home, she’s starting to do more around the house. She loves to wash dishes and she cooks her own eggs for breakfast. I try to give her some other cooking things to do if I think she can handle it, but she also is good at setting the table and pouring milk. Occasionally, she’s a good babysitter for Florence, but it depends on Florence’s mood. A lot of times, I just hear “I think Florence wants you, Mom”. She is begging for piano lessons, and I’m trying to figure out how to fit that into our schedule. It would be easier to pay someone, but I can’t see spending money to get someone else to do what I do. I was hoping to teach some this year, but there is just not a day free to do it. Maybe next year.

Alexander is my favorite little boy ever. Not that he doesn’t have his moments, he can throw a pout like no one I know, but overall he is the sweetest, most accommodating, easiest to get along with kid I’ve ever known. He is addicted to all things Spiderman. In fact, as we speak Tony is with the kids at Party City to see if the costumes are out yet because Alex just CAN’T WAIT until October to get his costume and mask. He likes to play games – “Will you play a game with me?” – like I could ever tell him no when he asks that. He likes Battleship…never mind he doesn’t know his letters or numbers. Last time we played, we made pictures of sailboats on the grid. He also is starting to get into computer games. Humongous Entertainment has two characters (Putt-Putt and Freddie Fish) that are geared towards his age group. The first go-round through the game, I help him, but after he’s played a few times, he can totally do those games himself. I love that when Florence is being difficult, or I need a shower or need to take care of a few chores around the house. He’s really starting to blossom socially. He used to be painfully shy, and he is still a little shy, but he’s starting to reach out to other kids and even calls them “my boyfriends”. I met a lady at school one morning who had a 3 year old with her and I told her I was going to try and bring Alex with me one morning to play with him. I told Alex about him, and one day he got up and got dressed to walk to school with me so he could meet “that boy”. Unfortunately, they haven’t connected yet, but I love that he’s looking forward to that. He will also start “church school” with the other kids this year. He’s really excited, mostly because he thinks he will get to have a Spiderman backpack, but also because it’s what big kids do. He has always been very articulate…not so much in the speech sense but how he can communicate his thoughts…and he says the funniest things. He loves to look at the fish at Walmart when we go shopping and I suggested that maybe Santa would bring him a tank this year. He says… “I don’t know, mom, maybe when I’m older”. When he was wanting to go golfing with his boyfriends, I said, “When JoeLeo was here, you kind of hid out in your room instead of playing with him” and he said “Sometimes I just need to go in here and think”. And he likes to try and articulate Florence’s thoughts as well: “I think Florence wants to get a drink” or “I think Florence likes me” and the never ending “I think Florence wants you, Mom”.

Florence, of course, is making the most progress. When you start out as a flimsy blob, there’s no way but up. At nine months, she is starting to pull up on things and she is crawling EVERYWHERE. She’s getting quick too. If she sees an open door to the outside or even worse, the laundry room, you can hear her little hands and knees slapping the floor as she puts her head down and tries to get there before you spot her. She has pretty much given up on baby food. Her favorite food is Spanish rice and spaghetti, though she doesn’t like to have it for every meal I found out. You know how it is, they eat something well, you give it to them for every meal? She does prefer to feed herself. She loves nectarines and peaches, but won’t eat a banana chunk if her life depended on it. She will eat pretty much any vegetable. This morning she had a waffle and some yogurt. We’re starting to work on signs with her – I’m trying to teach her “drink” and “all done”. She’s almost got the “all done” – well, when she’s finished, she swipes the entire meal off her tray to the floor. I guess the most important thing is that she is communicating. She is still nursing, but she’s getting bored with it in the daytime…unfortunately, this means we’re still up a lot at night. I’m finding it difficult to ignore her, which I know is the answer, but between the ear infections and the teething and the head surgery from way back, I’m having a hard time making her cry it out. She is going to be SO ROTTEN! Eileen gave me Jordan’s old crib and I now have it set up in Lucy’s room which I painted last weekend (ok, two weekends ago). Hopefully when we transition her into there, she’ll adjust to Lucy’s schedule of sleeping through the night (which could still use some improvement, frankly) instead of keeping Lucy up all night. We’ll have to see how it goes. I take some comfort in knowing that SOMEHOW I got my older kids to sleep through and that SOMEDAY she will too. She is definitely developing her personality. She is actually pretty good to play by herself for short stints and with Alexander. She loves our musical toys and the blocks and she takes great pleasure in destroying whatever someone else might be playing with. She appears to have a good sense of humor – she’s a very smiley baby. I try to take pictures of her, but whenever she sees the camera, she starts crawling quickly toward me – like she already knows she can see herself in the viewfinder after the flash. She loves the water – we’ve taken her swimming at Ginny’s as well as this cool pool that is down near Eileen that has a whirlpool, a kids area, a spray pad, and a lazy river (ok, she hates the lazy river).

Her scar is barely visible these days. You almost have to know to look for it. As for the shape of her head, most people can’t tell anything has happened to her. I still see her little bump on the side of her forehead (where they moved her ridge), but I believe it’s actually becoming smoother. As I spend time on my web support group site and relive it all through their surgeries, I can’t believe we ever went through that – but it’s been five months now.

We’re starting to feel the effects of the fading summer. The weather is noticeably cooler – not quite cool yet, but not in the 110+ level it was this summer. We all went hiking to the top of Hayden’s Butte a few weeks back, even Florence. Granted, she rode up in her stroller, but this was the first time she and Mom had been there.

Back to Business

2008-08-12T22:11:00.000-07:00

It's been so long since I've been here, Google didn't even remember me!!! We arrived back home from our month plus vacation last week and it's been a nonstop run towards getting ready for school. We had a wonderful time in Alabama and in Virginia. We got to see all our close friends and relatives and spend quality time with Tony's mom and my parents. My dad was home (on leave from his surgery) for most of our visit so that was a real treat.

We spent a little over a week in Alabama with Tony's family. We stayed with his mom and the cousins, Jackson and Caroline, came and stayed as well. Every year it gets easier - the kids slipped in together like they'd never been apart. We went to the movies, golfing, bowling, went to the McWane Center in B'ham, did a few chores around Gran's house and saw friends.

After that, we spent almost four weeks with Monica's mom and dad in Vienna VA. We went to museums, visited with her brother and sister that live in VA, went to see the Lion King at the Kennedy Center (totally worth it!!!), and even took a side trip up to CT to see Kathleen and all her kids. Lucy, Florence and I took a train up for Kinneely's bday and then drove down with her so that Rob wouldn't need to take time off to bring her. It was an adventure traveling down (in the RAIN!, complete with potty on the side of the highway), but the kids were so excited to be together, it hardly mattered we were stuck in the van. Mom took Charlie and Alexander up to a friend's (Elmer) home in NY to go fishing and they absolutely loved it. My mom says there is nothing like being with a child when they catch their first fish. Shamefully, I wouldn't know - all my kids have been fishing with her, but I have never been there. Now that I write this down, I feel a little guilty.

While in VA, I had a wonderful opportunity to meet up with some other craniokid families. 5 families met in Springfield, VA one Saturday for lunch. It was slightly insane, but beautiful to finally meet these people who have been my friends (over the internet) for the last several months since Florence's surgery. Florence was the only girl, but we thought it interesting that all babies present were metopic. Anyhow, it was fun to meet the other families with whom we will be linked forever because of the timing of our circumstances.

School started this week and while I miss my older kids (Charlie (3rd grade) and Lucy(1st)), I'm loving having only Alex and Florence to be with. Alexander is amazingly smart and so easy to be with. He listens to everything I say, but you have to be careful because he WILL repeat it back to later on. Lucy and Charlie are (sort of) glad to be back in school. They have good teachers and the perfect combination of new friends and old friends in their class. Grandma had taken them shopping for their back-to-school outfits and new lunchboxes, so they were ready to head in, complete with Sparta bags for backpacks. It was cute to watch the 1st graders on the "big kid" playground now that they had graduated from their Kindergarten area. You could easily spot them wandering around, awed at the size of the kids around them, searching for their peers in the midst of the giant aggressive upper level students. It didn't take them long to connect with their buddies, though. Charlie is in school in time for his birthday - tomorrow, as a matter a fact. It confuses me that I'm old enough to have a nine-year old son, in my heart, I'm still a child myself. But time marches on. We are enjoying watching the olympics on TV. Lucy loves the gymnastics since that's her current interest.

Florence officially started crawling today. Of course, she will only do it if you bribe her with small chokables out of her reach so she has to crawl. And when I say she has begun crawling, I mean, crawling forward....she's been crawling backwards for a few weeks. I have pulled her out from under couches, out of corners, from behind bookcases.... We had an appointment with her NS last week and she got a clean bill of health. Her scar is practically invisible and unless you look at her really closely, you can't tell she's been through anything. She is extremely alert and doesn't miss a thing. She is eating baby food very well and even starting to take on table food such as bites of chicken and fruit. She loves her siblings - loves all children really. She is still not sleeping through the night, but I haven't been pushing this too hard, so I'm probably to blame. But it's hard for me to push her in any way...After all, she is my last baby.

Summer in the desert

2008-06-20T08:54:00.000-07:00

Well, we're about to head East for the month of July. It's just too hot here. We're blessed to have family to escape to. Though some of that time will be in Alabama where I don't think it's going to be that much cooler - not to mention the humidity factor.

We went back to the Plastic Surgeon to get our postop appointment with him. He rubbed her head all over, double checked a few milestons and gave her the ok. We had been concerned about a small bump on her forehead that was sticking out. It looked like a mosquito bite. He assured us that it was just a leftover stitch from her surgery and that it would dissolve soon. In fact, it was so quick, I didn't even really get a chance to take a good picture of it. As the swelling continues to come down, more bumps and unevenness show up, but he reassured us that it would all even out over time. Here's a before/after shot of her head...unfortunately, my photoshop skills aren't great enough to get rid of the shadow in the after. But you can see that the triangulation/egg shape is pretty much gone. You can also see that the scar is just barely visable. Yay!

Florence is continuing to heal and is growing and developing right on schedule. She is sitting up now - it's amazing, one day she couldn't do it, the next day she could. We went to Kiddie Kandids the Friday before Father's Day pictures, and they asked if she could sit. I said "barely" but she is upright in all her shots, and from there it was no turning back! Now she'll actually sit in the middle of the floor and play with toys or watch tv for 15-20 minutes alone before she starts to get tired or lonely. She is still inclined to topple - in the picture with the legos, you can see a little redness over her right eye.

We had started baby food over Memorial Day weekend. We noticed some intolerance to the rice cereal, so we kept taking a break and starting up again. Eventually we just moved on all together to other types of baby food. She started out ok, but then started refusing food all together. This, coupled with a temperature and a swollen fontanel (the soft spot) led me to take her to the Doctor. It turns out that she had an ear infection. She's already shown reactions to amoxicillan so we went to Zithromax. She was ok for this until about 2 days in when she broke out in a rash all over her trunk in a matter of minutes. Fortunately, we happened to be at the Dr. for her 6 month checkup, so she wrote us another script. She also told us to lay off the food until she was totally feeling better. I'm bummed for her, but in a way it was just a useless exercise since she wasn't really eating. Hopefully she'll do better next time we try. She is also cutting her bottom teeth - the poor peanut can't catch a break. By the way, when we called the Neurosurgeon with concern over her swollen fontanel, the nurse told us that all babies' fontanels swell when they are sick, but that most parents don't pay such close attention to changes in their babies' heads.

In other news - I do have three other children, and no other website - the summer is flying by. Charlie has started violin lessons - I am teaching him and he seems to have a real knack for it. I'm hoping to teach some piano lessons in the fall in order to afford a real teacher for him. Lucy has been continuing her gymnastics - class attendance is small, so it is almost like private lessons, however, I really regret not putting her in camp. Maybe next year. Alexander is getting so grownup I can't stand it. I'm hoping to find an activity for him in the fall - something with balls, no doubt, so that his only outlet won't be riding in the car to the others' lessons. He also has a really musical ear, but I think he is still too young for any musical training. We've been hanging out quite a bit with our neighbor friends, though they just left for Montana for three weeks, so we'll be on our own for the remaining 10 days until we leave. We're also trying to organize the house a bit - get rid of clothes that don't fit (bye, bye maternity clothes!!!! finally!!), make room in Lucy's room for Florence (she's still sleeping in my room), we brought the arcade that Tony built in from the garage - it got too hot to play out there. Most days I don't feel we accomplish anything great, but the days disappear just the same. We're really looking forward to our trip out of town and will probably start packing soon.

Oh - and we did get fantastic news about my dad's prostate cancer. After surgery, they biopsied some lymph nodes to make sure it hadn't spread and he is completely clear. So while the recovery is tough, it's wonderful to know that he has no chance of getting prostate cancer again. He and my mom seem to be getting on well given that he is now home 24/7 and probably a little frustrated with being unable to work. Mom is busying herself with home improvements and dad is absorbing probably a book a day and catching up on movies.

2008-05-29T08:23:00.000-07:00

Wow. It's been nearly a month since I wrote last. Now, the kids are out of school and we're trying to kickstart our summer schedule so it won't all be filled with video games and wandering around saying "I'm bored". Florence took her first hike up Hole-in-the-Rock. I did the climbing, of course, while she rode in the Baby Bjorn, but I think she enjoyed the view. She has also started eating "real food" - and by that I mean, rice cereal. She acted as if she'd been waiting for it her whole life. She gagged a few times, but otherwise really seemed to manage to get the food to the back of her mouth and down her throat with little trouble. We'll starting adding bananas today.

Florence goes back to the plastic surgeon next week for a checkup. She really is looking good. The swelling continues to go down and now you can start to see the shape of her forehead. If you look closely, you can see a piece of "hardware" sticking out in the middle of her right side. There's also a slight ridge - I'll feel better once the Doctor has a look at her. You know, if God gives you a bumpy head, it's easy to accept. But if you pay big money for one, it's another story alltogether!! Her eyes still look a little puffy - it's so hard to know if this is how she's going to look or if she will continue to change.

We continue to make plans for our trip back east for the summer. We leave for Alabama on July 2 to see dad's family and then up to DC to spend time with mom's family. My dad has surgery on June 4 for prostate cancer, so my mom wanted him to have a good six weeks of recovery before we showed up with all the kids in tow. We're praying hard for my dad's surgery - we take a small bit of comfort in knowing he really doesn't have a choice. Please keep us in your prayers.

3 weeks

2008-05-01T13:39:00.000-07:00

To look at Florence, you can hardly tell anything has happened. I had bought some cute little headbands when I envisioned I would be hiding a serious scar until her hair came in around age 2. However, you really have to stare at her to see anything. Her hair is already starting to grow in - she had stubble where they shaved her for the surgery. The swelling continues to go down, though it's hard to tell that there's really any left - only those that know her the best can still see it (at least I hope that it's swelling - I would hate for her grandfather to remark on her "basketball head" forever). She does occasionally have crying jags where I wonder if she has any pain left, but I'm pretty sure she is also teething, so it might be that. Of course, I still worry that everything is ok in there, and I get nervous as she works on sitting up or when she has floor playtime and older brother runs toys and small furniture over her. But I suppose this worry is normal even for a baby that hasn't had major surgery.

Clean bill of health

2008-04-25T08:45:00.000-07:00

Here she is with her big brother Charlie. We went to the Doctor yesterday, two weeks plus a day after the surgery. There is still a little swelling to go down, but otherwise, we are starting to really see what she is going to look like for the rest of her life. They took out her 52 staples and gave her a clean bill of health. She cried while they removed the staples, but was fine right after. Here are some close up pics of her staples, and her with her nurses Mary and Joyce.
We've been given the ok for summer travel and said that she is out of the woods unless I drop her on her head or something. She is a happy baby with lots of laughing and smiling, and we are so happy to be this far out from the surgery. Here she is with Dr. Moss, her neurosurgeon.

13 days

2008-04-21T14:28:00.001-07:00

Florence is still doing really well. It's been one week since our ER trip, and she's run no fever or showed any signs of anything being wrong. Friday evening, we went to my sister's for a birthday party and all her nurse friends were there. They kept commenting on how pink she looked (as opposed to pale and anemic) and how good her incision looked. That made me feel better as I'm still a little inclined to believe the worst about anything. Her swelling continues to go down and while she still has some bruising on her head, her eyes look normal. She has started doing this funny thing with her mouth where she sucks in her bottom lip when she smiles. This little trick has showed up about the same time as her recovery, but the timing is most likely coincidental. Anyhow, it makes her smile sweet and shy, especially with her eyes being still a little heavy lidded. She is good natured most of the time, though her temper continues to rear its ugly head in the evening. We've been receiving meals from our Marriage Encounter group which means that I only have to feed the brood rather than try to prepare a meal during the "whine and dine" hour. My neighbor and her daughter come over often to make sure I get a break from holding her all the time - I'm still not inclined to let her fuss it out - she is going to be SO rotten when this is over. My mom left Saturday so I'm back to doing my own chores and entertaining the toddler during the day. I'm so grateful that she was willing and able to come as long as she did, not everyone has that. We are incredibly blessed with so many people coming to help us out, really.

We're starting to venture out of the house a bit - going to the b'day party, going to church, today we took Alex to the park with his cousins and my sister. She's doing great and probably happy to get a change of scenery too. We go on Thursday to take out the staples - I'll feel good to get reassurance from the doctor that everything is as it should be.

9 days later

2008-04-17T16:11:00.000-07:00

Things are improving slowly but surely. Her eyes are really starting to look open now and I'm sort of pushing her back into her old schedule. She is sleeping really well at night. She is a terrible napper, but she was that way before the surgery. She hasn't been running a fever since we came home from the hospital the second time so that's good. She also hasn't seemed to need the Tylenol either, though we're not deliberately denying it. I'm beginning to see my beautiful baby girl again, though there is no denying that even once the swelling is completely gone, she will look different. That is what we paid the big bucks for. I look back at the before pictures and I feel a little sad at the cutie-patootie we left behind.

One week mark

2008-04-16T17:03:00.000-07:00

I missed a few days because she had to go back to the hospital. She began running a fever Monday morning and they sent us to the ER. When we got there, the blood tests showed that her white blood cell count was high and her red blood count was really low. They checked us back into the PICU and gave her a transfusion and IV antibiotics. Fortunately they were able to find some of the donor directed blood left over from last week. Now, she has my sister's blood in her - they are forever linked. Even though they ran many tests, they never found a reason for her elevated blood levels and after one night and the full day Tuesday, they discharged us again with instructions to watch her closely and come back if we felt like she needed to. But so far, she has no more fever and is doing very well. We are still trying to get back to a normal schedule (she was up a few extra times during the night), but she is eating much better and I have confidence we are really on the mend now. My mom is still here caring for the other kids, a real Godsend. We have until Saturday to rest and recover before she goes home. Her eyes are both open now, though there is still some swelling and bruising . Her scar is healing nicely and we will go to get staples out next week. I'll post pictures soon - our internet is out and I'm borrowing a neighbor's computer just to update everyone.

Day 5 - back to normal?

2008-04-13T21:12:00.000-07:00

I've heard so much about babies taking a long time to readjust but Florence is really doing so well. The only thing is that whenever she gets really fussy, we have to wonder if she is in pain. Her eating is not quite back to normal, but she is doing pretty well. Her daytime sleeping is fitful, but truthfully, she was never a good napper. Last night went pretty well. As long as we keep her Tylenol current, she really doesn't seem to complain much. She likes to play with her noisy toys - the ones that make crinkly or squeaky sounds. The swelling is continuing to go down. The bottom of her face, from the nose down, looks almost normal. Tonight, her left eye is opening up a crack. When we noticed and got all excited, she actually laughed at us. As I sit here typing, she is talking sweetly to her stuffed octopus. It's so good to see her returning to normal. We go back to the doctor a week from Tuesday to get our staples out. Hopefully by then all the swelling will be gone.

Day 4 - Going Home

2008-04-13T20:58:00.000-07:00

We survived the night. Our 6 month old roommate moved out at some point during the night, and because they needed the space, they were in there cleaning at 6:00 a.m. Yuck. Florence had a good night, waking up only to eat and doing well. I'm buckling down for another day and night in the semi-private room. The nurse brought us a music playing mobile for Florence. She couldn't see the twirling birds because her eyes are still closed, but the music was sweet and we both appreciated it. She even smiled at me a few times. I called my mom to bring me a few things, and Tony brought them to us. He sat with Florence while I ran to take a shower. When I came back, Dr. Moss had come by and said that Florence looked so good, we could go home today if we wanted. He said it was up to me and how comfortable I felt about cleaning her incision and the fact that her eyes weren't open, but he didn't have to ask me twice. Of course I was nervous, but really, I thought we'd be fine and we lived close enough to come back if we absolutely had to. So they cleaned her incision for us one last time, removed her central line and all the other monitors and sent us on our way.

I called my mom at home to get her to explain to the kids what she was going to look like. When we got there, I offered them one chance to wash their hands really well and gently touch her staples in case they were curious, but they declined. They did wonder if they had ever had such a surgery or staples in their head. It felt so good to be home and absolutely amazing to sleep in my own bed!!!

Surgery - Day 3

2008-04-13T20:49:00.001-07:00

Friday morning. Just when I think her head couldn't possibly get any bigger. We got visits from our neighbor Tricia again as well as Aunt Eileen. The doctor says that we're well enough to move to the regular floor from the PICU as soon as she has two more doses of lasix (sp?) which they are giving to help reduce the swelling. We're sad to be leaving the personal care and private rooms of the ICU, but relieved that she is doing well enough to no longer need that kind of care. Her eyes are still swollen shut, but she is eating well and just getting Tylenol for pain control. They removed her catheter and her arterial line (in her wrist) today. That left the central line and the O2 monitor on her toe. Oh, and all the stickies that are monitoring her breathing and heart rate. Those were such a pain, beeping the machine every time I picked her up. We didn't move until around 8:00 that night. We moved into a semi-private room with just another 6 month old baby ( no parents with her) and we were so tired. The chair pulled out into a "bed" and that's where I closed my eyes...calling it sleeping would be pushing it. But Florence is doing fantastic.

Surgery - Day 2

2008-04-13T20:33:00.001-07:00

We had a decent night. I gave up trying to nurse her and just pumped bottles for her. She did pretty well - she was too drugged to try and resist. Whenever she got too fussy, we gave her half a dose of morphine and she would quiet right down. We spent the day trying to eat - she pretty much gave up on the bottle by about lunchtime, but once the nurses told me I could hold her, I figured I could nurse her again - and she was happy to do that. Our neighbor came by to visit, followed by her Aunt Ginny. At this point, she was really beginning to swell. I had seen many pictures of other children so I was aware of the swelling that was going to come, but since I didn't know what these children looked like beforehand, there was no preparation for how I lost her in all of that. I almost felt a little relief when she cried because it was the only part of her I really recognized. She slept alot and we started using Tylenol for pain relief. Her last dose of morphine was at noon this day.

Surgery - Day 1

2008-04-13T15:28:00.001-07:00

Florence's surgery was April 9, 2008. We did pre-op labs the day before which basically included a history and a blood draw. Then we showed up around 11:30 on April 9 to begin our process. After checking in, we met with the anesthesiologist and the neurosurgeon. Our surgery was scheduled for 1:30, but they wound up not even taking her back until about this time. This made our wait difficult since she had not eaten since 9:30 that morning. She did sleep a little while waiting, but also fussed at us when we didn't offer anything to eat. My husband, Tony, was fabulous with her, rocking her to sleep. When it was time to go back, around 1:30, we carried her to the operating room doors, and at that point, they took her from us. She was actually smiling and happy and went willingly with them. Tony and I walked the other way to the waiting room. I cried a little, but actually felt pretty at peace about the whole thing. We were able to kill some time trying to figure out where I could pump and also find some lunch. They came to tell us at 3:00 that they were beginning the surgery. Our nurse told us that she would come to update us at 4:00, but not to panic if she didn't. After lunch, Tony did some work on his laptop while I listened to music and read through a prayer book my sister had made especially for me and this day. I even managed to take a small nap. We watched 4:00 come and go, but I told myself that they were probably just finishing up and figured they'd be able to pass that news on shortly. Sure enough, but 5:00, both Dr. Joganic (ps) and Dr. Moss (ns) came out and told us she was finished. They escorted me back to her room while Tony packed up our stuff. She was taken to the PICU where she would do her recovery. Here we were introduced to some of the daytime staff and nurses. I watched from the door while they got her connected to everything. She looked positively normal except for being asleep with a green turban wrapped around her head. After removing the turban, we could see her incision with about 50 staples from ear to ear. She also had the most round smooth forehead - the beak was gone. There was almost no swelling at this point, and when she woke up you could see her beautiful eyes. She didn't seem to be in much pain, but they were keeping the morphine pretty steady for that first night. After she woke up, we were able to feed her some pedialyte from a bottle - a miracle since the previous week she had been refusing the bottle. I did try and nurse her by leaning into the bed; however, it was difficult for her to get a good latch and it was extremely hard on my back to lean over her. So I pumped milk for her and as long as she was "drugged", she seemed content to get her nourishment this way. My sister Eileen, who happens to be a PICU nurse at Phoenix Children's came by to make sure that I was comfortably settled in. She didn't really need to worry - all the nurses there were doing a fantastic job - but it was wonderful to have her there to make sure I had everything I needed and that I felt comfortable asking for whatever I needed. We felt greatly relieved to be on the other side of the surgery, even though we knew we had a long road ahead of us, we thought the worst was over. Everything was so good, Tony actually left to take Charlie to karate that evening, though he did come back and check on me later. Our room had a pullout couch where I would spend the night and the Family Center of the hospital had showers and a kitchen area where we could get coffee or use the fridge, a microwave, etc. We had a phone, a TV with a DVD/VCR player and even a CD player. We were set up pretty well and ready to face the first night.

Florence's Baptism

2008-04-13T14:55:00.000-07:00

Everything is moving so quickly between our diagnosis and the surgery. We've hardly had time to process everything. I'm having a difficult time visualizing ourselves on the other side of the surgery. At times, we are moving along normally and having a good day, but there is always something dark looming over my shoulder. Then I remember, "oh, yes" the baby is having surgery. Sometimes, I try to remember all my blessings and try not to worry, but then I remember that this is pretty significant surgery, and worth worrying about. I have found the most wonderful website: http://www.craniokids.org/ that has helped me feel like I'm not alone and to see what I'm facing both with the surgery and the recovery.

We had Florence baptized right after Easter. My sister Kathleen and her family came into town to serve as Godparents. I love the way they baptize at St. Bridgets, but I was especially glad to get it done before her surgery. They dunk the totally naked baby into a pool of water and then lift her high in the air, all while people are singing. It's very beautiful.

We also had the rite of anointing done the Sunday before her surgery. This, along with the baptism, made me feel she was extra protected for her surgery.

Florence - metopic diagnosis

2008-04-13T12:36:00.000-07:00

We had noticed that Florence had sort of "pinched" temples, but my sister (for whom she is named, actually) also had this characteristic, so we didn't think anything of it. It was at a Dr. visit for my other daughter (strep, bummer) that the Doctor asked if we had had Florence's head evaluated. At first I thought she was talking about the cradle cap, but she clarified it was the shape of her head and the "beak" that was forming down the middle of her forehead. The two pediatricians we saw didn't think it looked that serious, but they did want that confirmed by a neurosurgeon. I did a little research on the internet, but resolved not to worry until someone told me to. I went to the see the neurosurgeon on March 5, expecting to hear that we would monitor her head shape, but that we wouldn't do anything.

Unfortunately, he walked in and immediately knew that he wanted to recommend surgery. He explained the procedure to me, but told me it was still sort of optional. He wanted to get a CT scan to confirm there was no brain involvement and wanted me to meet with a plastic surgeon as well. He warned me about some of what I would find on the internet, explaining that the endoscopic procedure was available for metopic babies, but that he had found that the old-fashioned version had better results with a lower likelihood of another surgery.

He wanted me to get the CT and come back with my husband to discuss any questions. We did that and met with the Plastic Surgeon as well, both at Phoenix Children's Hospital. Once they looked at her scan, they noticed that the front sutures were fused together and were not allowing the brain to grow correctly in the front. It was also forcing the brain to grow backwards and they felt the back sutures were farther apart than normal. We decided that surgery was no longer optional. More research, more web searching...the surgery was scheduled for April 9. It is tough to find any pictures that show her ridge on her forehead, but it was there from the beginning. It's easy to see from the top how she had something of an eggshaped head.

Florence Kathleen - the beginning

2008-04-13T12:31:00.000-07:00

Florence Kathleen, my fourth child, was born on November 26, 2007. All three of my other children had arrived a week or so late, having been induced by the doctor. Florence, already trying to set herself apart from the others, arrived a few days early in the middle of the night. Fortunately my mom was still in town from the Thanksgiving holidays and was able to come and stay with my other children while my husband drove me in. In true "rush to the hospital" style, he got pulled over by the cops for running a "no right turn on red" light, but after seeing I was truly in labor, he let us go on. She was a tiny thing, 6 lbs 12 oz., but healthy. She did, while we were in the hospital, have to be under the bilirubin lights, but otherwise she was nursing well and a healthy baby. We came home after two days and she slid right into the family as if she'd always been there.

Florence's new page

2008-04-12T20:41:00.001-07:00

I'm creating this page as a place to display Florence's pictures from her surgery. Her full story will follow soon!