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Claire's
Journal -- 36th Month |
March
10
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Claire
was up crying at 4am. Mom got her and fed her. She woke her
cousin who fell asleep on the couch and helped mom out, then
eventually went to bed. Claire drank a bottle after mom gave
her some decongestant and tylenol (thinking the shot may be
hurting) and Claire went back to bed, but not back to sleep.
She stayed up talking for a while.
Mom got her up this morning... still with the runny nose,
but maybe not as bad as it has been. Got her ready and she
was off to daycare. |
March
9
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Claire
was up in the middle of the night with her cousin. Mom got
up and fixed a bottle for Claire and her cousin fed her so
mom could go back to bed -- Claire's cousin has been such
a big help this week!
Mom got Claire up and off to school. Mom had a meeting later
at work, and shortly afterwards had to leave to get Claire
to her RSV shot. Perhaps her last ones ever. Then picked up
the kids and came home and cooked dinner (heated up some enchilada
casserole she made on Sunday). Dad was golfing a bit in the
afternoon -- it was cold and windy, so it didn't sound too
enjoyable, and brought his buddy home for dinner before his
friend headed back to Valdosta. Claire had a goodnight. Mom
was exhausted so Dad and Claire's cousin took over and cuz
bathed and fed Claire and dad helped get her off to bed.
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March
8
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Today
is Claire's last day of PT while she's under 3 years old.
Mom will have to pay full price to continue PT or OT (at close
to$100 for 30 minutes - or so she's heard). She can't imagine
Claire not getting PT, so she's planning to take her once
every two weeks. A considerably less amount than the 3 times
a week that was prescribed and paid for through the Children's
Home Society clinic. sad. The county school system is suppose
to take over from here, but Claire's IEP (Educational Plan)
won't be reviewed until the end of the month as it is, and
mom hasn't heard good things about the therapists showing
up as often as needed, etc. Mom is going to try to not complain
until Claire isn't getting what she needs (that would be on
Monday). Mom has enough info to at least work on Claire herself
until the transition can be made. Lets hope it is a smoother
one than mom is expecting. :o) |
March
7
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Claire
slept well and woke up with a green nose again. She seems
to be doing pretty well overall, just congested, but eating
pretty well this morning.
Mom's going to post a guestbook this week for anyone who wants
to leave a note for Claire as she celebrates her birthday.
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March
6
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Claire's
sister woke mom up around 5am saying she just threw up (in
the toilet thank goodness). Mom sent her back to bed to get
some rest and checked in on her before school. She was quite
perky, esp when mom told her (as a test) that she *would be
going to school, and she was full of energy (in a not so good
way) and reminded mom that when she's thrown up before, she's
been allowed to stay home from school... and probably thinking
there would be parties going on at home while she's gone since
her cousin was visiting. Mom reminded her that everyone had
somewhere to go today, and she would be going to school. Not
another word from her, got dressed and off she went happily...
somewhat.
Claire slept well and woke up with her green nose again. Not
her usual smiling self, but mom woke her up, so that is to
be expected. She went to school this morning, a little later
than usual as mom got a call from big sister's school about
complaints that she wanted to throw up, yet she was able to
*skip back to class. Mom was suspecting big sis was stressed,
but not too sure what causes the random upset tummy. Dad and
cuz went to her school for lunch with big sis today - and
to check up on her.
Meanwhile. Mom is getting the party plans in order for Claire's
3rd birthday, March 11 at 4pm. Should be a lot of fun, and
if anyone wants to come, just RSVP. Not too sure many invitations
will get out into the mail this year, but hoping to have a
nice celebration all the same as the weather has been gorgeous.
This year, Claire has pretty much decided she has everything
she needs and would ask friends and family, instead of a birthday
gift, to donate to one of her favorite charities in her name.
The charities who have really helped Claire and her family
during the past 3 years are: Children's Home Society of Florida
and Big Bend Hospice. Mom can post more information later
if anyone needs it.
Thank you again everyone for keeping Claire in your thoughts
and prayers.
Mom picked Claire up for therapy and she was sound asleep.
The nurse said she was trying to wake her to feed her, but
no-go. Halfway through therapy Claire woke up... she was sitting
and proping on her hands and she was fussing at her therapist
something awful. Since she was awake, her therapist put her
on the big ball, one of Claire's favorite places, and she
proped on her elbows and lifted her head up in the air...
so high... mom was amazed, and the therapist was too. She
did it a few times as her therapist told a story to mom about
her weekend. It was almost comical.
In the evening, Claire ate well, but after her meds, she threw
up most of what she'd eaten, and still refused more food,
so mom just gave her a bit more meds and put her to bed.
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March
5
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Claire
was up at 3am, gagging, so mom rushed in. Helped her keep
it all down (typically by blowing her her face)and picked
her up to see if she wanted something to eat. Mom fixed non-formula
food, since Claire has been extremely congested with a runny
nose. Definitely has that cold back. She had a few bites and
opted out, so mom put it in a bottle she could squeeze (since
it was kinda thick, she opted not to use the haberman) and
Claire took a few more gulps and decided it was the same stuff
as before, and started blowing bubbles at mom, at 3:30am.
Mom decided she was pretty fine, but took her temp anyway,
since she had that mild temp last night, and sure enough it
was 100.2. Claire got her Tylenol, and mom opted not to try
to feed her more, since Claire tends to bring her food back
up when she has a fever (mom learned that the hard way). Claire
and mom went back to their beds and slept in.
Mom checked on Claire later in the morning and she was awake
in her crib, just hanging out with a nice runny green nose.
Mom got her cleaned up and tried the food again after her
meds. Claire drank about 2oz and then decided it wasn't what
she wanted, so the thumb went into the mouth and wouldn't
come back out, as if it were glued in there and Claire had
no say in the matter. Mom pulled her closer to cuddle and
Claire put on a grin a mile wide. Ahhh, that's what she wanted...
cuddle time, thumb in mouth and back to sleep on mom's chest.
ahhhh. Mom let her sleep a bit there while going through big
sis's school folder, then back to her crib.
Claire's cousin is coming in today from Michigan. The family
is more than excited to have her come and stay with them for
spring break! :o) Mom has been adding duocal to Claire's pedialyte
and it seems to be giving her a little energy. Enough to give
mom those great smiles and work down another bottle.
Claire's cousin arrived and sat down with Claire and fed her
a bottle... she really had the knack. It gave mom a little
break as she was trying to get some dinners ready for the
week ahead and dad was working on tonight's dinner. Claire
did well eating and went right to sleep after her bath.
Today Claire appeared to be seizure free and fever free too
-- Yeah!! She'll be back in school tomorrow. |
March 4
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Claire
woke up with a nice green nose again. She wasn't big on eating,
and mom figured she was congested, but tried often. Claire
slept a good part of the day, and fought with mom much of
the rest. Mom snuck in a nap while Claire and big sister were
sleeping too. Later in the day, Claire's cousin was being
confirmed (a sacrament in the Catholic Church) and so the
family went to support her. It was a nice mass, and Claire's
aunt and uncle held her the first half, until she started
gagging, and then her dad got her and took her out of the
church. She threw up a few times (the food mom fought so hard
to get in) and had a couple seizures too. After mass, the
family said hellos and goodbyes and left fairly quickly. Claire's
aunt brought her copy of a newsletter that Claire was in...
actually, she was front page. Her daddy calls her a cover
girl now. Mom wrote the article and it was very cool to see
if published. Claire is a special little person, and now even
more people know just how special she is to us.
Sitters were coming over to watch the kids so Claire's parents
could go out. Claire had a low grade fever, 99.6, which sometimes
goes away by itself, but mom didn't want to take a chance
and gave her a dose of tylenol before they left for dinner.
They weren't gone long and the sitters were from Claire's
school, so they know her pretty well, and mom loves them!
When mom and dad got home, all was well and mom got a little
more food in Claire and her meds, then put her to bed... hoping
she got enough to sustain her for a few hours so mom could
get some rest. Good thing mom had that nap! |
March
1
Claire and her ashes on Ash Wednesday |
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February
27
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Claire
had banner day at therapy. She sat for a few minutes on her
own, no help from anyone or anything. The therapist sat Claire
on the PT's feed and with her hands under Claire's arms, was
able to bring her to a standing position. Claire stood for
a good while bearing weight on her own legs. Mom was so proud
and thought it was probably difficult for Claire to go from
sit, to squat, to stand, but she did it a few times. She loves
to work on those leg muscles. It is probably a nice stretch
for her too. |
February
26
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Claire
slept through the night. She woke up with a nice green gunky
nose. Her brother woke up with a little cough, but no fever
yet (fingers crossed). Mom fed Claire and held her for a while
watching some tv while Claire fell asleep. Mom read her email
and looked for information about baby Tierney, who is a T18
child only a month or so younger than Claire, but recently
caught the flu. Tierney and Claire looked so much alike, it
was really neat, but her family lived so far away. Tierney's
mom had been keeping Claire's mom updated and mom had been
very worried as the little peanut wasn't keeping food down,
throwing up a lot and overall not getting any better. The
news today was very sad. Little Tierney had passed away. Her
mom sent Claire's mom an email and mom cried. We always think
they will just get better. Everyday is such a gift from God.
Mom went to mass in the evening as Claire's big brother was
still running a mild fever and Claire was wiped out from her
afternoon bath. |
February
24
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Claire
had a good day at daycare, seems to be on the mend once again.
Mom got a call from her brother at school, seems he has a
low grade fever and chills. His temp is 99, and in the evening
popped up to 100.5, so mom gave him tylenol before bed. Fingers
crossed it is just a quick virus. |
February
23
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Claire
slept great. Dad came home late from a basketball game and
said she was making little noises like she was just getting
comfortable, but fell back to sleep. Mom was up, and dressed
and then fed Claire and out the door. Claire was giving mom
really big smiles and dad couldn't keep his eyes off her as
mom tried her best to feed Claire through the grins.
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February
22
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Dad
was up with Claire giving her some food in the late night
hours, as he was up anyway. Mom was up with her in the morning
getting her breakfast and meds, then Claire went back to bed
for a good nap. Mom got a lot of work in and then woke Claire
an hour before therapy and fed her more. She coughed up some
phlem before therapy, mom was happy she got that out. Claire
was in a terrific mood for therapy, all full of herself. Arms
flying around and talking through the grins. Her PT worked
on positioning with the tadpole (a system of velcro and cushions
for getting Claire to do what she needs to to help straighten
and stengthen her spine and other muscles). Her OT worked
on getting her to grasp with her hands and tried out a new
splint, which Claire didn't much care for. Mom picked up the
kids after therapy and home for homework and baths while mom
got more work done and Claire napped briefly.
Dad was home later in the evening and then off to a basketball
game with friends. |
February
21
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Claire
was up for school, but when mom picked her up, she was fussing.
Not her usual happy morning self. Mom wasn't too sure what
to think until she stuck her finger in and noticed teeth.
Two new teeth that only just popped in. Dad got Claire's meds
and tylenol while mom got her bath ready. Claire had a nice
bath, that she cried through, and cried as her clothes went
on, cried during some cuddling, and then cried through her
breakfast and lightened up a bit before she got to daycare.
Perhaps the tylenol kicked in.
When mom picked her up, she was told Claire had a terrific
day -- ate a bunch. Mom was pleased to hear that after the
morning they'd had. |
February
20
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Claire
was up with dad, who had yet to go to bed. Mom is lucky dad
stays up late, but once he's in bed, he usually is down for
the count. Claire had a good day, staying home with the kids
for the President's holiday. Claire's big brother was bored,
so he made some cookies, big sister used her new markers to
draw lots of pictures of her family and friends... everyone
wearing a crown or a halo. Mom filled up Claire every chance
she got and trying to keep the food down as best as they can.
Claire is doing much better today, it is her last day of antibiotics.
Still a bit congested tho. |
February
19
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Mom
came home from her trip today, only to find out that the fever
dad mentioned (Claire had on Thursday of 102) was actually
more like 104. Dad said he nearly called the paramedic, as
her temp didn't go down very quickly after the tub and tylenol.
But it did finally go down. Mom was happy to be home. She
also got lots of information from the kids about how dad let
them eat candy after breakfast and all sorts of good stuff.
Mom and dad had a good laugh. Everyone looked fine and dad
was able to get Claire on her usual antib's when she went
into distress from the fever and throwing up and spending
hours with Claire in the dr's office... He handled it so well,
mom thought candy after breakfast was the least of his concerns.
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February
14
Happy
Valentines
Day!!
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Claire
slept great. She was a ball of energy this morning as her
mom told her she'd never seen a grin that big!
Claire got to school in time to hand out her Valentines Day
cards. Big sister and brother got some chocolate this morning
from mom and dad, but couldn't eat any yet. Sis took in her
valentines with lollipops attached yesterday, so she's all
ready, and cookies in today for her classroom party. Mom will
be stopping in to check on things and help out with the festivities.
Dad is swamped today and getting a bit stressed, but not about
mom going out of town, just about a bunch of other things
he's been busy with. |
February
13
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Claire
had a good night, dad even fed her in the middle of it and
she ate a bunch, maybe a growth spurt? When mom got her to
school, she realized she'd forgotten to give Claire her meds
-- geez! So she and Claire went to the clinic and got a late
dose.
Mom took Claire to therapy, and dad met them so mom could
get back to work. Claire had a good day and dad said she did
some good things.
Mom thinks that getting her afternoon dose on time (but not
real long after her morning dose) added to why she was passed
out when she got home... it was probably the coldest night
(and day) of the season, and when the wind hit her coming
out of her school, she didn't flinch, just kept sleeping,
and all the way home and out of the car - cold wind again
- nothing. She was worn out. Dad put her in her bed and she
slept while mom made cookies for sister's party tomorrow at
her school, then around 8pm, Claire was up and hungry, she
was fed and soon back to sleep. |
February
11
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Claire
slept great. Her brother had a birthday party, so Claire was
a little left out, everyone was outside, but it was cold and
damp and mom wanted to be sure Claire didn't catch anything...
She had a pretty good time when folks would come by to see
her, mom stopped by frequently to feed her, but overall, she
spent much of the afternoon in her stroller/wheelchaire and
sitting up like such a big girl, she had toys she was playing
with off and on and at one time she fell asleep in her chaire,
so mom let her stay there and catch a few "z's".
Dad took the kids to a basketball game in the evening, so
mom had some quality time with Claire, who had a nice warm,
long bath and the lots of food and cuddle time with mom.
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