Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 56
November 10   Claire wasn't feeling well in the evening, even a bit warm. Mom took her temp and she had 100.4 under her arm(that's 101.4 temp). She sounded congested too so mom gave her children's Motrin/Cold. That's some good stuff there... Claire got the dosage for a 2 year old, tho she's 4 years old, she's about the size of a 2 year old (well, she's wearing 24 month clothes anyway). Hoping she is better soon.
November 9   Claire did great at night. Mom doesn't recall getting up until about 6am... and Claire turned fussy after that, but likely just hungry since after breakfast she was all smiles and sweetness.
November 7   Claire had a great workout at PT today. Her teacher came to watch, so she was all full of herself and after she woke up she was ready to stand nicely and prop on her elbows just as nicely.

November 6   Dad was up with Claire and gave her a midnight snack. She was up early, but very quiet and mom got her to get her ready for school. She was tired, but awake and mom shuffled her off. Once at her school, she showed Claire's teacher how Claire liked to stand. Claire did a great job and even went to squat and back to stand. Big Grrl. Those legs are really getting stronger.
November 5   hanging with Big BrotherClaire was ready early for breakfast, and mom was too since the time change let her feel she was sleeping in an hour earlier... mom loves fall time change! Who said you can't 'get more time' ?
She ate and was changed and then out the door to school. As always there were folks in the hall and in her classroom excited to see her... and she was excited to be seen too!
She had a great day at school... sleeping for hours and then eating a great big lunch around 1pm. Mom picked her up a little early as she was getting all the kids and wanted them home early enough to get homework finished at a decent hour. For some reason, Monday night homework is the worst. Big sis has spelling and Math and big brother had 4 subjects. That coupled with baths and dinner it is always a full night. Claire ate well and off to bed so mom could get in bed by 9pm. Mom is trying to take advantage of the time change and get everything done an hour early. Wouldn't work if she wanted to leave work an hour early, but everything else seems to flow nicely. Claire and the kids were in bed by 9pm and so was mom... yeah. Dad even layed down for a bit and fell asleep, but caught himself and had some work and laundry to do, so up he got... those powernaps are great for dad... he'd go all night if he had enough to keep him busy. Mom, not so much... exhausted usually with the long full days, but still up at 2am if needed... probably why the days are so long... thank goodness for coffee! Sometimes she indulges in an afternoon cup, but tries to keep that to just green or black flavored tea.
November 4   Claire had a most uneventful Sunday and mom was happy about that! During mass, she couldn't decide if she wanted to sleep or not. Mom thought for sure on a full tummy she would, but they visited the nursery about halfway through and Claire dozed off and on in there. The young girl that rocked Claire has a little brother who is Trisomy 19, just one chrom off of Claire's. Later, mom and Claire hung out and mom cleaned while Claire watched and ate and mom put her in her bed for her afternoon nap, but Claire didn't want any part of that, so mom put a sweatshirt on her and put her in her stroller so she could be with mom and Claire went right to sleep... go figure. ;o)
November 3   Claire had a morning wake up call as her brother had an 8:30am football game. Needless to say it was chilly outside, about 40 degrees. The family bundled up and out to the field they went without breakfast (except big brother who was up earlier)... there was no time. Claire slept the entire game, wrapped in 3 layers of clothes and then a blanket. Claire's big sister also had a blanket to wrap up in, and she pretty much sat still all morning in her chair and blanket. Mom cleaned up around the house after a much deserved and well needed nap and a cup of tea at high noon... Dad fed Claire and watched her until mom took over after tea and later prepared for the big college football game of the day... er evening... at Boston College. A very fun evening when all was said and done, about midnight or so. Claire had a late snack around 11pm and slept great through the night.
November 2   Claire was up much of the night and enjoyed a snack at 4am.
Mom was pretty tired, so she opted to get Claire out of bed at the last minute, give her meds and whisk her off to school. The teachers are so understanding when she shows up hungry for her breakfast... or lunch, depending on what meal you called the 4am snack.
November 1   Claire had a fun day at school and they've been great about working on some PT with her during the day. In the evening she threw up in her bed after mom had gone to bed, but mom was up cleaning her, with dad's help.
She had a busy night after that.
October 31   Cindy Loo Who - who was no more than twoClaire's day was pretty relaxing, unlike mom's. Mom was working from home and the emails were flying keeping mom very busy. Claire slept some, but fussed more and everytime she did that, mom would hold her and she would be happy. The little peanut has learned how to get attention and craves it. Claires PT appt was at 4pm, and mom opted to cancel it as it was running into bath/costume time and it couldn't all get done without a parallel universe.
In the evening, the kids were home and bathed, then off to get costumes on and then to parties. You can see Claire dressed as "Cindy Loo Who, who was no more than two" from Dr. Seuss's "How the Grinch Stole Christmas!".
October 29   Claire had a great morning... mom woke her up and she stretched and yawned... it is so cute, mom is thinking she needs to get a video of that... and work on more vidoes of Claire for the website...
Thank you everyone for your wonderful emails about Claire standing... it is great to have such support out there, even from folks that haven't met Claire. It is very heart warming!
October 28   Lazy Sunday for Claire and family. Dad was off and running, showing houses all day, and mom took the kids to church and Claire (with stinky diaper) went to the nursery. Mom did change it before going to mass, she had time.
After mass, almost everyone took a nap, dad came home breifly to gather new listings and he was off again. Mom fixed chicken quesedillas for dinner, yum! Claire ate great all day and slept well too. Did great through the night even.
October 27   The family was up early as big brother had a flag football game. It was about 59 degrees, and everyone was bundled... Claire had an additional blanket and slept through the whole game with a random popping her head up when mom would yell for Claire's brother... then a grin, then back to sleep. The family had a big night the night before, esp mom, so she got a nap in as tonight would be just as late with an evening football game going until midnight.
October 26   Crazy fun day for the sibs as they had a fall festival at school and then a fall carnival in afterschool. Cotton candy and popcorn everywhere! In the evening, mom needed to get Claire's big sis to her ballet practice, then pick up something for a costume for that night, then back to pick up sis and then Claire and home to get dressed. The costume party was for hospice, a cause near and dear to our hearts. Dad's band played and tho it was a late night, mom was full of energy until she got home.
October 24   PTClaire was up at 2:30am. Mom decided to feed her and got her food ready, thinking she may be asleep when mom finished, but Claire was awake and ate great. Mom is getting more serious about fattening up the Peanut, and this is the next step, middle of the night feedings.
Claire sure used her extra energy well. In PT, she is only getting better and better at weight bearing. This week, her therapist got her in her standing/weight bearing position (often times from a squating position)and held her hands for balance while Claire did the rest. Her therapist knew it would be a good day when noisy Claire showed up with big smiles and kicking feet... full of energy and enthusiasm. A banner day! Mom didn't bring her camera, but did pull out her cell phone and used that raunchy camera, but in this case, the pictures are worth so much, no matter how poor the quality!
October 16   Claire was up to her usual late-night shanannigans last night. Singing and kicking and generally awake just after her dad goes to sleep. Mom didn't hear crying or sadness, so she went back to sleep.
Claire slept in this morning as long as her mom let her. Mom rubbed her back to get her awake, and Claire moved around, but kept her eyes closed, as if to ask mom to leave her alone. Mom picked her up and her eyes opened as if to say 'good morning mom'... diapey change and meds then out the door to have breakfast at school.
October 15   Typical Monday for Claire... out the door to school. Fun day there and new hair-do. Home to hang out in her stroller and watch mom make the mashed potatoes for Claire's dinner and after dinner, off to bed. The kids ended staying up late as there was much homework to do and even then it didn't get finished. <sigh>
October 14   Dad picked up Claire's big sister from her sleep over at her friends home... just in time to get ready for mass.
Wonderfully lazy Sunday for Claire. She was up eating, but very fussy, mom put her back to bed and she went to sleep. Dad stayed home with her this morning and mom took the sibs to church where their uncle was and enjoyed his company. In the afternoon, Claire hung out outside watching the game of catch and some basketball. Mom planted a new bulb she purchased with her gift certificate from her birthday last year and big sister kept trying to think of ways to avoid the outside so she could watch tv.
Later in the evening, the family went to friend's home for bbq ribs and a entirely wonderful dinner... the home really is comfortable - can't always say that about ppls homes. Eating outside was a treat as well, an no bugs around, except for a yellow jacket that came to visit mom's bbq rib bones on her plate.
October 13   Claire was up early and had an early breakfast so she could go to her brother's flag football game. Once there, she settled in to mom's lap and slept the whole time. It was a cool morning and Claire had her sweatshirt on and the sun to mom's back... there was no waking up with all the fresh air to be had.
Claire's sister had a friend over today and mom helped them bake cookies and they had a fun time. Afterwards, she was invited to sleep over, so off they went and it was a quiet evening at Claire's home.
Later in the evening, mom noticed Claire was sleeping her day away... mom decided to take off the Baire's sweatshirt and sure enough she was awake the rest of the evening... too funny.
October 12   Another good morning (and good night last night). Claire slept through and was very hungry this morning. She had breakfast (rice cereal, etc) at 8am, and got to school late today. She will probably have a great lunch too as she's been loving her mashed potatoes lately.
October 11   Claire got a lovely suppository this morning for her constipation. Her teachers said she had a great day and especially full diapers in the morning. Yeah!
In the evening she watched college football, but fell asleep by halftime... it wasn't a particularly fun game to watch. She knew her team was not behaving and getting a lot of deserved penalties, but she didn't get why the other team did the same stuff and didn't get penalized for it as much? Mom has a hard time explaining how life can be so unfair sometimes. She did let Claire know that if that is her biggest concern, she's in pretty good shape these days. ;o)