Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 55
|October 10||Claire did well in therapy today. She slept much of the day, so that instilled in mom how important these Claire days are. For Claire to have these days where she doesn't have to be on schedule for the next class activity, she can just go to bed and sleep for hours without lights or noise or bothers of any kind... it's gotta be good to have that respite from school. Mom works harder on Claire days as she has work to do and folks to manage while also caring for Claire and seeing that she isn't in her bed when she's awake, and that she's somewhat entertained and always fed and full and clean. It can be tough, but, on days like this, mom sees the benefits. When Claire needs to just sleep the day away, mom knows that she's probably getting sick and needs the rest.. that means a healthier Claire for days when she goes to school.|
|October 9||Claire was a happy girl this morning and at school. Seemed to eat well there too... yeah!|
slept well last night. Dad said she was up once (while he was
still up), but she went back to sleep rather easily. Mom checked
on her a couple times in the morning and she was sleeping. Finally
she woke up and had a little breakfast before rushing out the
door. A little too rushed as mom forgot her daycare bag. Dad
said he'd run it over later in the morning... hey it's Monday
was up with her dad and ate breakfast, fussing much of the morning
and then mom got her ready for church. Mom knew that Claire wouldn't
be too quiet in church so she took the bumbo seat and off they
went. Claire went right to the church nursery and seemed to be
fine during her stay there while the family went to mass.
After mass, she slept and was up fussy for much of the day. Later in the evening, mom gave her some Motrin Cold, she sounded congested, and fluids. Claire was a happy baby again, and stayed awake until her second half of her dinner just before bed, but after her bath. Mom was in bed shortly afterwards.
was up most of the night... very upset for a while (around 1am)
then still fussing and went into playing mode (around 2am). Not
sure what time she actually went to sleep since once she goes
to playing mode, mom tends to go back to sleep.
Everyone is pretty much exhausted today, except Claire. Up early and ready for breakfast, ate around 7:30am and then kicking and playing while mom showered and got ready for work. It is a two-cup-of-coffee morning -- strong coffee... and 3pm tea too!
|October 3||Claire was fussy all day... at her PT, she didn't let up much on her poor therapist... just giving her grief the entire time. She let up a bit during standing and did some nice long weight bearing... mom and therapist both very proud, but she wasn't big on the heal stretches. She ate great today and in the evening just before bed. Mom was proud she kept it all down as well... all day!|
|October 2||Claire had a nice morning but threw up once at her school. In the evening she ate great and slept well (for Claire) too.|
|September 28||Claire slept through the night and was in a good mood this morning. Mom woke her up, bathed her, and gave her meds, then out the door to school. Mom took her in a little later than usual as she wanted to let her rest as much as possible.|
had a rough night last night... up the whole night... no one
slept. Mom even stayed up a little later than usual watching
tv - in bed just before 11pm... she shouldn't have and feels
it all now... exhaustion.
Mom was up with Claire sometime around 3am. Claire was fussing and mom checked on her several times until she decided to just go ahead and feed her. Claire doesn't typically eat in the middle of the night, much less cry for food, but mom thought it would be an opportunity to fatten her up a bit anyway. Claire seemed a bit happier, it may be that she enjoyed the attention. Everyone went back to bed, until mom heard Claire gagging... she checked on her - close to 4am, and Claire had thrown up. Mom cleaned it up - in the dark - then went back to bed. Claire was in a little better spirits, enough for mom to feel like she could try to sleep anyway, but better spirits doesn't mean quiet... so mom slept on and off until the morning alarm.
She was hoping to maybe catch an extra moment of quiet until she remembered a 10am meeting this morning... so up she went to confirm the meeting, get dressed and get Claire out the door. She was on time to the meeting, but still not quite awake. Her boss met her at the meeting with a coffee... a co-worker bought it for her - very thoughtful... she was very appreciative and it was well needed. Life is so nice when you have ppl in your life who do things for you when you are out of whack.... and mom sure was this morning... low on sleep and lots to do.
After her meeting, she went back to the office. She had plans to meet friends for lunch and about the time she was to leave for lunch, the nurse at Claire's school called. Evidently, Claire had thrown up and had a very low grade fever (typically her temp runs up to 99 then back down to 'normal' without intervention). The low fever didn't bother mom, neither did the throwing up actually, but when they mentioned that she was lethargic and worried... then they mentioned diarreah... mom decided it was time to check on the peanut herself. Cancelled lunch and backed out of a 2pm meeting, went to pick up Claire who was fast asleep.
Mom took her home and put her to bed. She slept for hours, the little peanut was exhausted. When she woke up, mom got a call from dad to see if she could pick up the sibs, and mom gave Claire pedialyte with calorie powder, Claire drank well, then they went to get Claire's siblings... got home and mom let Claire go back to sleep.
Later in the evening, Claire ate really well and mom could see she was tired, so meds then off to bed for the peanut.
|September 25||Claire's was pretty tired this morning, tho she slept great through the night, at least mom didn't hear a peep. She was awake when mom went in to get her and groggy. She soon woke up during the diaper change and was full of her wonderful smiles... Mom packed a good bag for her today. She included 2 juicyjuice boxes (banana-strawberry flavor) and pedialyte, along with some banana rice cereal (with cane-sweetened soy milk, olive oil, duocal, applesauce, pinch of salt and sugar). Also some diapers. As usual, dad helped mom ... he carried Claire and the diapers while mom carried the bag, purse, laptop bag to the car... even skipped the coffee, thinking she will make it when she gets to work. At Claire's school, her teacher mentioned that Claire didn't have a runny nose yesterday, and mom noticed it too, after she mentioned it. Claire seemed to be over her cold. She also slept without mylacon, motrin cold or even getting mom up in the middle of the night to put on her hand thingies so she wouldn't stick her fingers down her throat.. that child certainly slept hard.|
|September 24||Start of the work/school week and everyone got out of the house at a reasonable time in the morning. The naps over the weekend really helped mom put things in perspective and get up by 6am. Even Claire's big sister was up and putting on her clothes before mom went to wake her up. Banner morning... dad was the last one out of bed... highly unusual as he is usually the first one up.|
|September 17||Claire's morning was good. She woke up rudely by her mom, and diaper changed... then out to the kitchen for meds and big smiles for her daddy. He had big smiles back.|
went to mass this morning, she was the first one ready as usual.
In mass, towards the end she started crying. Mom had to take
her out, not sure what the little sweet pea was dealing with,
but on the way home she went right to sleep. Very odd.
Claire got her hair trimmed today. The ladies at her school won't like it, as they love to brush her hair and pull it into ponytails and it is always so cute. But when she is sleeping, it tends to get in her face and mom is opting to cut it back around her face and around the back. She will still have plenty of length for some cute "do's".
|September 15||Relaxing Saturday for everyone. Much of the family took naps, as there is a big football game tonight that starts at 10pm. Dad and mom had an errand early in the day, then naps, and later came dinner and gametime. Big fun... usually is when your team wins, even if it is 2pm before it ends.|
|September 14||School and work as usual, Claire finished all her food (big vat of mashed potatoes mom sent in, with different fruits). In the evening, mom got a sitter - the wonderful teacher from Claire's school. Mom can't say enough nice things about her. Mom and dad went out as dad's band was playing and mom was in the mood to hang out with friends and dance. It was a fun night, but a late night as expected. Mom sure enjoyed the night out.|
had a fun day with her mom. They were up early - 4am, and Claire
was crying. It was her pitiful cry, and mom waited a moment to
see if it would pass, but it didn't, so she was up getting a
snack for Claire and some Mylacon, since that worked well last
night. It took a while, Claire was pretty upset and stopped crying
long enough to eat, then back to her whimpering. Mom held her
for a while. She eventually settled down, she put her in her
crib, she fussed a bit more and then was back to sleep. It was
a rough night, sleep-wise, so mom was exhausted in the morning.
By 9:30am, mom got Claire out of bed and fed and ready for PT.
She had a therapist she hadn't seen in a while and it was nice chatting. She couldn't believe how long Claire was. Claire stood for her a couple times and showed off a bit.
Claire fell alseep on the way home and slept for a while, that was nice for mom and she got a lot of work done. Claire was up after a couple hours and ready to eat. Mom was sitting with Claire a couple hours later and Claire started fussing... and getting louder. Mom decided, tho a bit early, Claire was hungry again and Claire gulped down her food. Mom even used a regular sized spoon to get the most in each bite. She was till talking loudly afterwards, but overall she settled down and fell back to sleep after a bit. She's been dozing off and on all day and enjoying being by mom. A big thunderstorm came by and mom unplugged the puters, but left the internet up so she could keep working on battery power on her laptop.
had an good day. It was a sad day remembering what happened 6
years ago and mom had a 'goose bump' experience early on. She
had just dropped Claire off with her teachers and walked outside.
One of the other teachers outside said, 'look at the rainbow'.
Now mom looked in the sky and there was a very full, very bright
rainbow. It was so odd as she noticed there didn't appear to
be clouds around it, like you would expect with rain and rainbows.
Then the teacher said, '... and today is 9/11'. Mom and the teacher
quickly scrambled to get a camera from staff to get a pix.
In the evening, Claire cried. Mom isnt' used to that and held her until she realized that Claire may be hungry. She'd eaten at 5pm and her teacher said she was full, it was 8pm, but usually she would eat closer to 9pm for her last meal of the evening. Mom was amazed that she would be that hungry, and when she fed her, Claire was gulping down her food like she hadn't been fed all day (mom mom is sure she had been, and fed well as all her food was eaten by the end of the day). It was odd for Claire to cry for hunger, but she's done that before, however it had been quite a while.
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