Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 43

October 7


Claire was up early this Saturday morning... didn't know what was going on, but got a big breakfast and then out to the flag football fields to watch her sibs play. It was windy and very very cool. Mom had Claire wrapped up in a blanket with a light little jacket on... and shorts for when it warmed up (but it didn't really). The sibs played at the same time and so they weren't there long. Claire didn't see any of the games, the fresh air hit her and she snuggled in mom's lap and slept the entire time. Just as she did last weekend.

October 6


Happy grrl in standerThe Peanut woke up with a green nose again... second day in a row. Claire went to school after breakfast... she had probably 5-7oz and at her school, she was acting as if she hadn't eaten in days... so the fed her more. She's been eating really well lately and when mom arrived with food, she noticed there was more left from yesterday, so Claire had plenty for the day, and that was good since mom picked her up and there wasn't much left... maybe 4oz or so of food from the day. At home, Claire was so hungry, she ate a bunch more food, and got all 'fired up'... the food instantly seems to give her energy (whereas food makes mom want to sleep -- well, everything makes mom want to sleep :o).

October 5


Claire seems congested. Her class was going swimming this morning, but mom asked that Claire not go, if she is getting a cold, there's no reason to make it any worse. The teachers agreed. She had a great day.

October 4


Claire has seemed under the weather lately. She came home and went to sleep. Didn't really want juice, so mom gave her meds and a decongestant. Then Claire went to bed for the night and didn't wake up once. Mom was expecting a middle of the night feeding, since she skipped dinner, but not a peep.

October 2, 2006


Claire had OT today and they worked on the one button during feeding. It went really well and OT is very optimistic about Claire using buttons. She is also working with Claire on holding an object. Claire has no desire to hold an object, she is content without ever picking anything up... she did hold an object today for 15 seconds... probably a Claire record.

September 29


laughing and hiding from the cameraClaire's teachers have been working on giving Claire new tastes. Today, the gave her mac and cheese (ground up) with a few bits of ham. She smiled big and patted her tray for more. PT came by and worked on sitting and weightbearingon her arms. The teachers and specialists go together and determined that Claire didn't need speech yet, as her OT is working on similar things that the ST would be working on. Also they decided that Claire wasn't ready for two buttons yet, and needed to master one button first... so they are keeping 'More Please'. Mom notices when she feeds Claire and says 'More Please' that Claire opens her mouth a little wider... very cool.

September 27


Claire stayed home with mom while mom worked much of the day and Claire sat and watched when she wasn't sleeping or eating. Claire had PT today, but seemed very hungry, tho she ate earlier but napped just before PT. She worked hard on sitting on a stool and holding a bar in front of her to maintain her trunck, then decided she would like her thumb in her mouth so she took a hand off the bar and was able to maintain her upright sitting... it was funny as her therapist warned her that it may not be a good idea, but she did well ... for a short period of time... then over she went.

September 25


Claire had fun day. She was up talking some of the morning, starting around 5am. Mom's personal alarm clock. At school, she had OT and did very well. She had one switch(large button she can press) that would tell her 'more please' and one that said something like 'drink please'. She seems to be picking up on it all, mom couldn't stay too long, as she needed to get to work, but enjoyed watching the OT work with Claire. They are really doing some neat things with her. :o)
After school, Claire got more juice and dinner to follow.

September 24


Claire had a nice day with her family today. She had a bath and a full tummy before going to church. Her cousin held her during mass and afterwards too. Her cousin also came over shortly after mass to watch the kids so mom could do some shopping. It was a nice break for mom, she didn't know where to begin. Dad was working at an Open House. After the family regrouped, they went to Claire's uncle's for dinner and brought a homemade lasagna (dad's a great lasagna cook, esp for an Irishman). The kids swam and Claire hung out in the air conditioning with mom and her aunt while dinner was cooking. Claire's sister and cousing made angle food cake earlier, so they ate that for dessert. Yum. The kids went to bed, and Claire had her late night snack, meds and mom put her down. She can still hear her in there talking.

September 23


A fun Saturday. Claire went to watch her sister play flag football. It was hot and dad had a seat for mom and a big golf umbrella, Claire sat in mom's lap, and slept a short part of the time. It was very hot and mom was a little worried about Claire's rash getting worse, but Claire thought it was worth it to see her big sister play football. Especially since she didn't know if sis would be playing again. It is slowly becoming a not-so-favorite sport and baseball is looking better these days. Perhaps that is because it is easy to talk about and she doesn't have to do more than that right now. Dad stayed home with the girls while mom took Claire's brother to a football game. It was a fun time. Claire slept much of the time mom was gone, and dad couldn't watch the game, so he had to listen to it and watch the Ryder cup (golf)... he wasn't too upset about it. That is good for mom!

September 22


Much of the week, Claire ate all the food mom sent with her (and mom makes sure there is extra in the school pantry for days like that). She had a great week, tho today she came home with a nasty rash on her face. The kind she gets from sleeping and sucking her thumb and sweating at the same time, during her nap. Mom will work on it with the usual lotrimin to dry her skin/rash the first day, and A&D ointment the next days to keep the moisture off her skin/rash. By Sunday, it should look much better, provided she doesn't sweat while she sleeps. Today, after work and gathering the children from school, Mom and Dad decidedto take the kids to dinner and a movie, as they got progress reports today and they were very good. After a dinner that could have easily been improved upon, and an adorable movie, 'Everyone's Hero'... seems like that was the name, the family got home to a house without electricity. Dad wondered why mom forgot to leave lights on, mom was sure she did and wondered why they weren't on... maybe the bulb on the porch was out? Opened the door and noticed the switch didn't work and realized the electricity was out. Hmmmm... later they wondered why the electric trucks and firetrucks up the street didn't clue them in.... brilliant. Well, mom hit dad's laptop (running off batteries still) and that light up the room... got the usual flashlights and candles and everyone was off to bed. Mom even had some great nightlights that lit up w/o electricity, so the kids felt right at home. Fortunately, the air conditioning wasn't a big problem the house stayed cool. The lights and all came back on around midnight and mom was up turning everything off. Checking on everyone, etc.

September 13


Claire had PT today - private pay. She did exceptionally well. Her therapist picked her up and Claire put her feet down and went straight into weight bearing. Her therapist was in awe. Claire picked up one of her legs and her therapist decided it was time to see what Claire could do with trying to walk. Mom was excited. She layed Claire back down, and held her around the waist as Claire went from laying on her back to weight bearing on her feet, then picking up one leg at a time as her therapist held her across the chest, and randomly on her bottom. She took several steps like that, initiated on her own, and her therapist helped her place her feet back down. After many steps and many back to standing times, Claire got a little tired and worked on her sitting and propping as she sat. She did pretty well with that too. Her therapist said she took her first steps today... mom thought she just took her first 'assisted steps' today. Either way, it was very exciting that Claire shifts her weight from one leg/foot to another... and mom thinks it is very exciting that she WANTS to do it! Banner day. Mom and Claire love their therapist!

September 12


Claire had a nice day at daycare and they wore her out, but she didn't go to sleep when she got home... in fact, she was full of herself, showing off with many smiles all evening. If anyone just looked at her, she would let them have a big Claire-grin. She seems to be feeling really well these days and she ate all her food today at daycare - about 4 cups worth. Her usually little problems of keeping her hands out of her mouth and showing her they can be used for good and not for evil, and her rash on her face, still are challenges for her family and teachers. But small problems all the same.

September 11


Claire slept in. Mom woke her for meds and a bath. At school the OT was waiting for them and worked with Claire on her switch. When Claire wanted more, she could hit the button and a little voice would say 'More Please' and Claire would get a bite. Claire hasn't quite mastered it yet, but OT is there twice a week for Claire's breakfast. Today, Claire wanted to sleep through breakfast as her bath tends to make her sleepy. Mom was off to work and a very busy day. She hardly sat down for a moment and doesn't remember getting to code anything today. So much to do and so little time.
In the evening she was happy to be able to pull a casserole from the fridge and cook it for the family so they could get homework done and get to bed at a reasonable time. Mom is hoping to get more planning done on the weekends so the week nights go as smoothly as tonight. Claire fell asleep once things got settled. Mom will let her sleep abit more and then get her up for dinner. Maybe about 20 minutes of a nap while kids are bathing and getting ready for bed.
Lots of 9-11 stuff on tv today. Mom is just too sad watching it all and has turned off the tv several times. It is overwhelming to remember that day 5 years ago and everyone wants us to relive it, mom would rather make plans never to relive it, but to learn from the experience and realize the freedom we still have, and count her blessings. So much has happened in the past 5 years that she has to thank God for, and does that every day. It is still very sad that so many people had to die from the hatred of others.