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Claire's
Journal -- 33th Month |
December
9
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Claire
was up at 4am, fussing. It was likely because she wanted to
roll over, but her arm was in the way and she got frustrated.
She is usually capable of rolling over, but with the splint
on one arm to keep her hands out of her mouth, the level of
difficulty of the move was increased. She was also very congested,
so mom cleaned up her nose with saline and the 'nose-sucker',
got her some decongestant and gave her formula with pedialyte...
she drank about 3oz, then decided she had enough and zonked
out in mom's arms after fighting sleep. Mom went back to bed
by 5am and was more than exhausted in the morning. That is
why God created coffee.
Dad got Claire up while mom was getting ready and running
late, and off to school mom took Claire. |
December
8
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Claire
had a pretty good night last night. She wanted to sleep much
of the day at daycare, but ate pretty well most of the day.
She had RSV shots today, as mom was debating on whether to
get them or not, but couldn't find any information leading
to those shots making her sick... not from other T18 moms
or anywhere on the Internet, even her insurance really thinks
she needs them, and since they are willing to pay, knowing
it could keep her out of the hospital with some really bad
case of pneum, then mom thinks it is worthwhile, even if she
does get a little sick... mom and the ped have the tools to
get her better (fingers crossed).
When Claire was really sick about a year and a half ago (Easter
2002 - month 13) the family was fortunate enough to have the
option of taking her from the hospital and putting her in
the hospice house here in town. The ladies were truly the
most wonderful nurses, and absolutely adored Claire. The night
before Easter, when mom was up much of the night saying goodbye
to Claire as her prognosis was so poor, the family was lucky
to have a special nurse help them through the long night.
Mom took pix and it was a special time for them.
Mom received word today that the nurse who helped her through
that difficult time, is now a hospice patient herself. Mom's
heart is heavy and very saddened by the news and is keeping
up to date as best as she can on the nurse's condition, but
it doesn't look very good at all. Please keep her and her
family in your thoughts and prayers. |
December
7
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Claire
had a pretty good day. She went to therapy and did very well,
her therapist hadn't seen her in 2 weeks, so the improvements
were amazing to her. Claire loves therapy. |
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December
5
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Claire
had a great night, snoring included. Music to mom's ears.
Mom woke her this mor ning and she was smiling as big as she
could all morning for mom. Mornings like this make it hard
for mom to take her to daycare, but life goes on. Her rash
looks a little bit improved, having the ceiling fan on last
night probably helped. It didn't really get too cool last
night and the heat and AC are all off, so she probably needed
the extra breeze. She drank 5oz of pedialyte and formula before
heading out the door with mom. |
December
4
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Claire
had a good night, tho she was up around 2:30am (mom had just
gone to bed around 12:30am)after watching the game). She was
either hungry, or trying to roll over and her darn arm got
in the way. Mom fed her and positioned her on her side and
she seemed happy with that. She also gave her one of her hands,
so she could comfort herself and get back to sleep. Mom was
tired, so it was a moment of weakness.
Her face still has a rash on it. Darn rash. It looks a little
improved today, but very little.
She went shopping with her family before going to church.
She slept all morning during shopping and much of church.
At church, they had the annointing of the sick. Mom asked
dad if he thought Claire should go up, but she isn't really
sick. She is considered 'weak', so mom asked Claire's aunt
(across the church) if she would take her. It is hard admitting
your child isn't well, tho the family is used to living with
Claire and all her little special needs, and she's been gaining
weight and doing pretty well, so mom is feeling like others
need the blessings more than Claire... and yet, she doesn't
want to be in denial. Then mom thought it would really sad
for a baby to go up. Mom decided it wouldn't really matter
what other people thought, but was tearing up that the revisiting
that Claire isn't typical. And Claire's aunt took her up with
love in her eyes and really enjoyed holding her and staring
at her as they went up for Claire to get her annointing. The
priest annointed Claire's aunt, who later put some of the
holy oil on Claire's head. The priest did bless Claire while
she was there. Her uncle carried her to receive communion
too, so she got another blessing then. Dad thought it was
peculiar that the family missed the morning mass (running
too late due to having a nice big family breakfast) and ended
up at the mass for the sick and weak. Mom reminded him that
this Christmas will be Claire's third. Pretty amazing for
a baby who wasn't suppose to even take a breath. Claire's
family is so incredibly proud of her.
Mom and Dad spoke with Claire's aunt and uncle after the mass.
Claire's uncle just got in yesterday from Pennsylvania (and
some homemade pumpking pie... not really) and said it was
snowing there. The family has been morning the loss of Claire's
grandpa's last sibling, her great aunt and they are all so
very sad, as her grandpa is too.
Mom and dad discussed briefly skipping Claire's RSV shots.
Mom insists that RSV is really awful if a baby gets it, but
dad reminded her that Claire seems to get sick after each
shot. Mom noticed that last year, but everyone thought she
was nuts... so for dad to notice it this year, made mom rethink
how 'nuts' she really is (tho briefly rethink it, as dad reminds
her frequently that she is nuts).
After mass, Claire's family took her shopping for a new Christmas
tree, but didn't find one they liked, so they opted to use
the one from last year, that dad thinks looks like something
from a Charlie Brown Christmas, and mom thinks it looks nice...
and it's paid for. :o) Claire was talking so much during her
trip shopping that everyone took notice of her. Once home,
mom gave Claire her afternoon meds and fed her some, then
put her in front of an open window while dad hung some new
curtains next to her. The weather today is gorgeous, the high
should be around 75 today.
Claire
went to bed, but didn't really get to sleep, so mom got her
up and fed her more, then put the fan on and she went to sleep. |
December
3
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Claire
had a pretty good day, nibbling for much of it on food as
the day went on. She's eats really well when mom gives her
spoonfuls of rice cereal w/banana and adds more bananas and
mixes with Isomil. Most everything else she couldn't care
less about, except when she's really really hungry. She had
a good amount of liquids. and took a nice long nap during
the day while mom cleaned a closet that was long overdue for
cleaning... she didn't give anything away, mom has a lot to
learn about NOT being a pack-rat.
In the evening, the family enjoyed watching their favorite
college team win a game.. yeah. Everyone was so happy, and
the game ran really long as each team was working their passing
games. It got close, but they pulled it off. Yeah!
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December
2
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Claire
woke up crying. A very sad, pitiful cry. Mom was dumbfounded
as Claire isn't one to cry unless something is really hurting,
so something was really hurting, but mom didn't know what,
so she started with Mylacon for gas and moved to feeding her.
She settled down after a good while and dad didn't know what
to think either. Mom took her to school and she napped well
after eating at 9:15(8oz) and slept from 10:15 to 2:15 when
her teacher woke her to eat, but slept for much of the day.
Her teacher is concerned that she is getting sick. Mom is
hopeful that she is just growing. |
December
1
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At
school, she weighed in at 16lbs and 12oz! The scales there
are a little different than the drs office, so mom doesn't
see that as an official weight, but does like to see the difference
from week to week, esp since it has been going up each time.
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November
29
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Claire
had a great night. At school, she ate alot! She had 24 oz,
eating 8oz at 9am, 8oz at 11am and another 8oz at 2:30pm.
Then, at home, she ate about another 6-8oz. Mom is very proud.
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November
28
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A
very sad day, mom got news from grandpa that his sister, who
was in the hospital over Thanksgiving, passed away. Mom is
sad, and very sad for Grandpa. He will be going up for the
funeral. Extra prayers for him during this difficult time.
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November
27
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Claire
had a great Thanksgiving. She went to visit her grandparents
on Wednesday and get lots of cuddling and stuffed with food
for the weekend. It was so nice seeing everyone and watching
football and eating lots of food. Claire's aunt really stuffed
her and Claire kept it down. Can you say, fat turkey, fat
baby (er... toddler)?
Everyone was in good spirits, tho Grandpa's sister is in the
hospital up in Pennsylvania, but looks to be doing well from
what mom hears. We are saying extra prayers for her.
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November
22
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Claire
had a great night and her face looked much improved from yesterday.
Mom got Claire up just before running out the door... gave
her meds and change of clothes and diaper... even put some
A&D ointment on her face before leaving and got her to
school before they started breakfast. Mom fixed her breakfast
there for them to feed her and then off to work.
Claire weighed in at school today at 16lbs and 4oz. Go Baire!
She also at 24 oz at school alone, that doesn't count what
she ate at home or in the evening... whoo hoooo!!
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November
21
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Claire
slept well. She went to school today and mom picked her up
for PT. She did well at PT but started to fall asleep on the
ball just as time was up... little peanut. She slept all the
way back to school, and woke up once she got there. Her day
was filled with a lot of little power naps, but no really
long nap like she is used to... so much 'running around' is
likely the reason.
In the evening, she wasn't real interested in food, but drank
5oz of shake and went to bed. She fell asleep in mom's arms
within a few minutes and looked pretty tired. Dad bought her
some A&D ointment for her rash on her face. The daycare
ladies mentioned that they'd been using it and it works well
as it has an antibiotic AND it acts as a moisture barrier,
so mom will try it tonight, and try to keep Claire's hands
out of her mouth (but she sleeps so darn well when she can
put her thumb in her mouth before sleeping. |
November
20
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Mom
woke up to lots of nice birthday wishes. It was a fun day
as breakfast in bed was planned, but with little time before
church, mom got breakfast at the table as she fed Claire her
breakfast. After church, Claire took a nice nap with gave
mom and big sis an opportunity to also sneak in a nap... not
big sis's favorite thing to do, and she will tell you so,
in more words than that. After nap, family came over for dinner
and cake and it was big fun! Friends stopped by later and
the family hadn't seen them in so long, so it was nice getting
caught up on everything. A wonderful day for mom. Claire ate
well, tho not as great as mom likes (never is) and had a bath
in the middle of the parties... she finished up a bottle before
bed and zonked right out in her bed.
Her rash probably looks the worst it has looked in a very
long time. Mom has been putting neosporin on it to help keep
it clean, but she's going to have to get tough on Claire putting
her hands in her mouth if she wants her face to clear up soon!
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November
19
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Mom
was up early getting big sister dressed and off they went
to the Nutcracker Breakfast. It was an early breakfast outside
(45 degrees) and watching parts of the Nutcracker Ballet,
which big sis was fully aware of all the characters and music
(as she's seen the Barbie Nutcraker - about 20+ times). Dad
is coaching big brother's team and they had practice in the
morning too, so a sitter came by to watch Claire to give her
parents some good bonding time with the sibs. Claire ate well
and between the time dad left and mom came back, she wasn't
there too long. Later in the evening, Dad took mom out for
an early birthday dinner. It was nice to get out have some
time together... it was a good day for Claire as she ate pretty
well and seems do be doing well ... mom is a little worried
about winter for Claire, but knows to take it one day at a
time, treat symptoms as they come, and keep the fluids going
down. That darn rash on her face is still there. Dad has lost
his voice... sounds worse than it is... seems he's also got
a little cold to go with it. Mom is hoping he can settle down
a bit and get some rest, but dad is a hard worker... there
are houses to be shown! |
November
18
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Claire
is doing well. Mom is getting over her cold and just has a
dry cough to deal with. Dad on the other hand isn't so lucky.
He seems to be getting mom's cold and he has to sing tonight
with his band. Poor dad... let's hope his voice can hold up
better than mom's. |
November
16
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Claire
had PT and OT today. She did pretty well and even took a 2
minute nap in between. Mom still struggles with trying to
keep her hands out of her mouth, tho admittedly her hands
look clear, no signs of constant wetness or chewing/sucking.
She did her excercises well and seems to really enjoy her
'baby gymnastics' as her PT calls them. Mom usually corrects
her, as Claire is not a baby, she's a toddler. :o)
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November
15
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Claire
slept through the night except once when mom asked dad to
go check on her to see if she was too hot... it was within
minutes of dad going to bed so he was still a little awake,
not to mention mom was still in her coughing mode, so he probably
wasn't sleeping too well anyway.
Mom was up with good intentions of going to work, but noticed
once the kids were gone, how quiet it was and she was still
very under-the-weather and probably shouldn't go to work,
but was so tired of being at home. She rolled over and took
a short nap, then got up for a daytime Tylenol cold med, made
some tea with honey, ate some cereal and off to work she went.
During her brief nap, dad came home after dropping off the
kids and got Claire up, gave her meds, breakfast, change diaper
and clothes and took her to school. That dad is a real dream!
He knew mom was up most of the night coughing... tonight she
will give them both a break and take a cough suppressant.
She's still has an overall feeling of exhaustion, tho she's
taking as much vitamin C and multi's that her body can handle...
and some iron too. She told grandma she's turning into a Vitamin
C pill... Grandma said, 'Yeah, I bet (hubby) thinks you are
a real pill about now'. Grandma thinks she's so funny. Mom's
getting tired of being sick, so manybe if she acts well, her
body will take the hint! So she went to work, and upon arrival,
her boss decided to take the afternoon off, coincidence? Don't
really know. |
November
14
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Claire
slept through the night, just up once needing a blanket. Mom
stayed home today and went to the dr. She was only able to
get in with the nurse, and was told it was a virus and there
was nothing that could be done but to treat the symptoms.
Gave her some options including codeine. Mom figured that
would knock her out, and she wanted to hear the kids if they
needed her so didn't see that as an option. She got some Musinex
for her gunky cough and continuing with the Tylenol at night
to knock her out just enough (one tablet does it for her).
Once she gets to sleep, she does pretty well sleeping for
a good stretch.
The day was fairly unproductive, since the dr appt didn't
give mom many options for getting well quick. So she went
home and couldn't sleep, but was exhausted. She tried to get
a few things done, like answering emails, but didn't feel
much like doing that either. Good thing she's got some sick
leave left at work. She'll try to get into work again tomorrow.
This staying at home stuff is so boring... daytime tv stinks.
Claire had PT today, and dad took her. He brought her home
afterwards, so mom had her to play with a bit, but the little
peanut came home exhausted and went right to her nap, she
slept for nearly 3 hours, and about when she was getting up,
and mom was fixing her cereal, the kids came home... so she
had entertainment finally. :o) |
November
13
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Mom's
three-day weekend is coming to a close and she spent most
of it in bed trying to get over this dad-gum cold. She's miserable
because when she gets the energy to do something, she loses
it quickly and wants to lay down... not much like mom. Dad's
been great covering some of Claire's feedings and giving her
some meds. He's still opting for a sponge bath over a real
tub bath, but mom thinks it's better than nothing.
It was a lazy Sunday and big brother was putting the finishing
touches on his presentation for school tomorrow, sis was glued
to the tv, disappearing off and on to go play upstairs and
dad was working and running errands, previewing homes, etc.
Mom and Claire just hung out much of the day with the windows
open as the weather is gorgeous (low 50's, highs in the mid
80's... maybe?). Mom is having headaches, thinking all this
is from her head/sinuses draining from the cold front that
came in this weekend. No telling. If it is still bad on Monday,
she's going to the dr. She had a fever last night, and dad's
band was playing, so she was getting the kids fed and in bed.
Needless to say, it's cereal for dinner... and big brother
is making dinner tonight. |
November
11
32 months
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Claire
slept great and has been eating well too. Mom is very pleased
and Claire's little bunnies look a little chubbier. Mom is
hoping to get more weigh ins at her school, but the scale
is old and mom isn't too sure it is reliable... not to mention
Claire is getting taller and mom isn't too sure how much longer
she will fit on the scale. Kids were pretty bored today and
mom tried to get a little nap in during the day. Dad had to
get work done, realtors don't really get days off.
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