Christmas loometh

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

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

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

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

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.

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

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

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

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

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

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?

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

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

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

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.