Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 42

September 10


Claire had a good night. She likes to get up in the middle of the night and fuss. Her fussing lasts about as long as it takes for mom to get out of bed and take 3 steps... so mom takes a little longer to get out of bed... to see if Claire really means 'it'... she usually settles in on her own, but mom is then awake, usually around 4am, and never really goes back to a deep sleep. But she's learning to live with that.
Claire had a pretty good day. Kept all her food down, went to church in the rain with mom and the kids, and didn't complain. Enjoyed the cuddling in church and back home for a nice nap on a rainy Sunday. In the evening she continued to eat well and missed her bath. Mom will give her one in the morning, it is always nice to take a clean toddler to school.
Mom was busy in the evening and had energy since she took a nap with Claire. She cooked a casserole for dinner during the week and made a big pot of spaghetti sauce too. She baked cookies with Claire's sister as Claire watched from her chaire. The kitchen was cleaned up kids were in bed and mom finally decided it was time for bed.

September 9


Claire had a nice day. Mom and dad didn't have a sitter for the game today, so they hung out with the kids and watched it at Claire's uncle's home. It would have been nice to go, but the weather said 60% chance of rain, and mom was under the weather (no pun) last week, so she thought it would be best to avoid sitting in the rain for 3-4 hours. It never rained. Oh bother.
The family had a nice time all the same, eating popcorn and icecream after dinner... yummy football food. :o)

September 8


Claire had PT today at her school. They are working on sitting up and on weight-bearing on her arms when she sits.

September 7


Claire's OT started working with her today using a switch. It is essentially a button and when she hits the button, a voice says, 'More Please'. The positive reinforcement of her getting more food each time is what should get her used to the idea that hitting the switch gets you more, please. Mom is excited at the thought of Claire being able to communicate what she needs. And just as excited to think that she will get as much food as she wants everytime she eats. Fingers crossed that she learns quickly how to use the switch, and then, onto other switches!

September 5


Claire and her family enjoyed a nice long Labor Day weekend. They worked on cleaning the house and on Monday went to Claire's uncle's home for a pool party. Claire had a big time with all her friends and a little later in the day, the weather was cool enough even Claire could sit outside and not sweat.

September 2


Claire slept in and let mom sleep in too.
Mom woke her for meds and food and Claire hung out for a bit and went back for her morning nap. Mom did too, and big sister joined mom and big brother fell asleep on the couch -- late night at a friends house the night before. Dad was out showing homes most of the day. Everyone eventually got up, but brother still slept and Claire ate her usual mush with broccoli and chicken, oranges and bananas mixed in. Mom worked on the new sippy cup, but Claire just has to suck too hard to get it out, and with the spill proof plug out, it comes out a bit too easy... mom is reguessing it all and will keep everyone updated on the status. Next step is likely thick-it added and no plug.

September 1, 2006


Claire was up for a7am breakfast and mom put her Musini next to her so when she kicked she could make noise. That thing was going off the entire time mom was in the shower, and the sensitivity level was very low (meaning that she had to kick a lot for it to play continuously). That baby loves to kick kick kick! Claire had an exhausting day. She went to school and had PT in the morning and ate well. She went to sleep along with the other kids and mom went to her school to see PT with Claire, but she'd come earlier than planned. Mom was okay with that, just happy she's getting PT at her school now. Yeah!
Big brother went to stay at a friends home overnight, and the girrls had a sitter so mom could go watch Dad's band play. It was a fun evening with friends and good to get out.

August 31


Claire had a little runny nose off and on, but overall seems to be back on her 'feet' and kicking a bunch. She went back to school today and was greeted with many open arms. She went swimming first thing and then ate well afterwards. Mom is really working on getting more fluids in her to help clear the stool from her tummy (sometimes you can feel it in there, when she's laying on her back). The stool seems pretty much non-existent at the moment... probably why she feels so good.

August 30


Claire had a fun morning. She slept in then off to PT a little later in the morning. All that sleeping helped mom get work done. At PT, private pay, she stood for a while and sat for a while with her arms extended out in front of her holding onto a bar. Very cute. She's really doing will with her therapy, esp since drs never imagined she would ever sit, much less stand with little assistance. Mom is proud. Brother and sister had flag footbal practice tonight and they came home late with little time for homework, bath and dinner, but got it all done and in bed at a decent time.

August 29


Claire slept great. and... YEAH! Claire woke up without a fever. Her last tylenol was about 10pm last night and mom is very proud. Claire kicked butt without a dr visit(she was going today if she was still sick tho). Mom is tickled over this. Whooo hoooo... banner day for Claire and her family!

August 28


Claire is still having her fevers consistently Her first one of the day at 4:30am at 101.3 (all temps listed are under her arm, so add a degree for oral temp). Mom is giving her Motrin mostly lately just to get rid of the darn fevers, as the Tylenol wasn't really doing the trick for very long (as expected). Tylenol is fine for the day, but Motrin really kicks the fever, fast and for a long time -- two things mom loves to see! By 1:30pm, she had another fever. As the fevers subside, since the Motrin keeps them away for a good while, mom is giving Claire food. But mostly giving her fluids of Juicy Juice and Pedialyte. In the evening, Claire had a temp over 100, and since it was rather late, and mom wasn't big on staying up too late, not knowing what the night will bring, so she opted to give Claire her Motrin before it got too high (and she would have to spend the next hour waiting for it to come down and watching Claire's pitiful face). Her runny nose seems to have stopped running, at least for the moment, she woke up with a nice clean face.

August 27


The family was up and getting ready for church. Claire had her usual Sunday-before-church-bath and was dressed. Mom noticed she was shivering and remembered she felt warm when she got Claire out of bed that morning, but figured she was just being Claire... who sweats at the drop of a hat. Around 10am, Claire's temp was 101.5 and mom gave her some Tylenol. Mom stayed home with her and the others went to mass. Later, at 5pm, her fever was up again, 101.7, and more tylenol... this time, it didn't go down as well as mom liked and Claire was miserable... by 7pm, mom decided it was time for the big guns... Motrin. Claire went to bed shortly after her fever had gone away... mom did too.

August 26


Claire talking in the morning and ate well. Mom got her ready and they went to big sister's first flag football practice. The coach was awesome starting with the very basics of playing football, like, don't cross the line unless the ball moves, then run as fast as you can. He was extremely patient with them too. She learned how to properly throw the ball, with the laces where they should be, and how to step into it, she did great! Claire was extremely warm as practice was at 12:30 pm. Mom sat on the grass with Claire and held an umbrella over them to keep the sun off. Claire did pretty well. Once home, it was time for more lunch and juice.

August 25


Claire was talking much of the night, it is no wonder she slept a lot at her school. Mom decided to put her on her side instead of her tummy when she sleeps, so she can move around more, maybe not the best idea for mom's sleep, but Claire seemed to enjoy having a party in her crib at 3am. She had a good day at school and ate well, at home in the evening one of daddy's friends came by to visit and that was nice. Mom and Dad were going to go out to eat with friends, but had to cancel as the baby sitter never showed and never called. Mom was concerned, and dad left messages, but no call back.

August 22


Claire was up crying. Mom wasn't used to that so she held her for a while and Claire seemed to settle down a bit, but still crying. Mom thinks she is constipated and felt some stool in her tummy when she rubbed it. Poor peanut.
In the morning, Claire was up and balled up in the corner of her crib playing. Mom got her meds, pedialyte with duocal and miralax, changed her diaper and gave her a glycerin suppository and off to school they went. Claire threw up a little on the way to school. Mom gave them instructions to call her if she threw up more.

August 21


Claire slept great. She had a nice day at school. Evidently the air conditioner went out in her after school building, and since it was actually cooler outside, they spent much of the afternoon there. Mom picked her up with plans to go watch her big brother play baseball, but dad called and said it was much too hot and they were in full sun, so mom opted to keep Baire home in the evening. Claire ate once she got home, and mom gave her some pedialyte with miralax before bedtime. Claire seems to be filling her diapers fine, but mom noticed her tummy had a lump resembling stool, so she's on the warpath to keep her super hydrated. Tonight she is full of smiles and kicks for everyone... great spirits and looks really good to mom. Of course, when you have a smiling toddler... er... preschooler, you gotta have a PHOTO SHOOT! And mom was on top of things, as you can see from the photos here. :o)

August 20


The family was up and the kids were in the pool playing after breakfast. After packing up, the family left the cousins and were off to see the boat races and Claire's uncle, who flies around in the helicopter. The boat races were fun. Claire didn't have an umbrella, but she did have her hat on and a cute dress, and plenty of sunscreen, and she wasn't out very long as the race only lasted an hour and she did great.
After the races and a swim in the pool at the hotel, the family headed back home. Claire ate along the way and was awake the whole trip, kicking and smiling.

August 19


It was a fun time in Destin. Mom was up with Claire and the kids went in the pool after a big breakfast. The family was treated like kings from their cousins (on dad's side). Claire went in the pool too and had big fun. Mom took stills and video shots of her... Claire was in a float and she seemed to like it. Much of the time she wanted to lay on her back and kick her feet. When mom held her legs straight down, she could sit up straight and had a big time. She was in the hot tub (without the heat) and it was in the shade, so even with sunscreen, she could stay out a bit longer and not have the bright sun on her. Being in the hot tub also kept her way from the splashing and waves of the older kids. Later in the evening they went to see cousin's new house on the bay, very 80's but mom is certain within a year, it will look very different and the cuz's have excellent taste in decorating and it will be neat to see the transformation! The also went by the beach house and rested up a bit before heading off to the beach. Family pix were taken before the sun went down and the kids got to burn off some energy running and playing. Gorgeous night, cool and a nice breeze. The beaches in Destin have got to be the most beautiful beaches in the entire world... with the soft, fine, cotton feeling white sand, and the clear blue/green water. Mom loves it there.

August 18


Claire slept well last night and had a great day at school. After school, mom did some quick packing and off to Destin to see Claire's cousins. As usual, Claire did great on the trip, just hanging out and kicking and smiling much of the time. Once they got there, a short ride about 2 hours long, they hung out at the cuz's house and had a great time.

August 16


Claire slept well last night. Mom went to a staffing meeting to get Claire's PT and OT started. Evidenlty, OT will come to see her twice a week, but PT didn't think she needed more than once. Mom doesn't get that as Claire really needs PT, she has so much potential and if she missed just one session, that would be a whole week lost. PT will be on Friday and OT will be on Monday and Thursday. Mom is just happy to get things started, so she will see how it goes. She's also decided to continue the private pay PT for evaluation purposes as she knows how excellent that therapist is, and doesn't know this one yet.
After the staffing, mom took Claire home, worked a bit and then they were off to Claire's PT (private pay) and Claire had missed nearly a month of therapy. Between the therapist cancelling, and Claire's big trip to NC, there were cancellations galore. Guess that happens over the summer months. The therapist said Claire is doing excellent, standing (with help) for greater lengths of time and Claire even sat for a whole minute (mom timed her). When the session was over, Claire always puts the therapist in a good mood as Claire usually shows progress. PT even said it is possible that Claire may grow into using a gait trainer if her standing progresses as well as it has been. The thought of that is way beyond belief... mom doesn't rule out anything where Claire is concerned. Afterall, she does great in her stander!

August 14


First day of school!
The kids were pretty excited and to Claire it was just another day, as it was the same school as she'd been going to all summer. Only difference was that she was going to have the teacher she had last year, but didn't have over the summer, so the familiarity will be there, and some excitement. Mom is very pleased that Claire is in the same class as last year, as her teacher knows her well, tho she's certain the other teachers are terrific and know Claire couldn't have gone wrong no matter who's class she was put in. Mom got a stack of forms and then was back to work before she knew it.

August 12-13


The family went to visit Grandma and Grandpa. Mom hadn't been to see her parents since Easter and was getting a bit homesick, and this was the first weekend in a while they had free. It was big fun as always. The kids swam much of the time in the pool and mom hung out with her sisters and parents, swam a bit too. Grandpa has a great umbrella that literally hangs over the pool, so Claire hung out in the pool water under the umbrella and sat in her bumbo on the edge of the pool for part of the time. She layed on her back when mom was holding her and kicked a lot, it was very cute.