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Claire's
Journal -- Eleventh Month
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February
10
47 weeks |
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Claire
slept through the night last night. Mom and dad are rested.
Mom woke Claire from her deep slumber and gave her meds then
got her dressed. She was a bit sweaty, so mom gave her a quick
sponge-bath and dressed her for school. Mom gave her some prunes
instead of bananas in her shake this morning, to keep her BMs
'regular'. She drank all but an ounce, which she finished on
her way to school. Mom sent 4oz of pedialyte with juice for
her to drink before she drinks her formula, again, to keep her
'regular'.
Mom spoke with the Audiologist today to set up an appointment
for Claire. The Audiologist mentioned before that there was
a possiblity that Claire may be able to use a hearing aid. The
possiblity was enough to make mom very happy. When mom spoke
to her today, the Audiologist said that she already ordered
an aid for Claire, and that she would need another test to see
if hearing had changed, and be fitted for it. Mom was jumping
for JOY! To see Claire's face when she can hear... will it be
a good face? or, given our household, will she just rip it off
her ear and decide she was happy with no hearing... :o\ |
February
9
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Claire
woke up during the night for a few ounces of shake, then fell
back to sleep once she had a full tummy. Mom woke her in the
morning to get ready for school. Dad picked her up from school
and she hung out until it was time to go out to dinner to
celebrate her brother's birthday. The family enjoyed Japanese
Hibachi and was joined by Claire's uncle, aunt and two cousins.
They came over to the house afterwards and hung out for a
short while until it was time to get the kids to bed. Claire
drank shake at the restaurant and then again at home mom made
her another shake. Altogether she drank about 7oz before mom
put her to bed around 9pm.
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February
8
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Claire
woke up at 1:30am and went back at 3am when she had a full tummy.
She got up and got dressed for church, accompanied by 6 other
children including her brother and sister... and mom and dad,
or course. She snored nice and loudly at church... no one seemed
to care.
She came home to regroup with the kids and head out to her brother's
basketball game with her mom. Then home where she just took
it easy all afternoon... no nap. |
February
7
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Claire
slept well until close to 4:30am when she woke up hungry. Mom
fixed her 4oz of shake and she drank that in about 45 minutes.
She dozed back to sleep on mom's chest and mom put her back
in her bassinet. She was up again at 7am, hungry. Mom gave her
meds and pedialyte to wash them down, then Claire fell back
to sleep again until about 10am, when mom woke her to eat breakfast.
She had bananas and applesauce with a splash of formula.
Claire spent part of the day swinging and the rest of the day
eating... she just kept wanting more food... it was nice for
mom, except she wanted to get some cleaning done since Claire's
brother was having a small slumber party that night to celebrate
his birthday. He turns 10 on Monday. (Double digits!!) Mom is
having a hard time believing she has a 10 year old child...
especially since she is so young herself. ;o)
Claire fell asleep around 8pm on the couch, but woke up when
mom put her to bed... so mom fed her more shake. She went to
sleep around 10:30pm. She as a tired little bear. |
February
6
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Claire
slept through the night last night.
She was up at 7am and drank 5oz of banana shake by 9:30am.
She was so full, she fell back to sleep. She woke up and formula
started coming out of her mouth, as if her 'overflow' valve
kicked in... only about 1/2 oz came back up. Then, mom put
her in her swing and she fell back to sleep while mom answered
some emails and got ready for work.
Mom was also waiting for a call from the dr office to see
if Claire needed more x-rays or additional antibioitics, since
her last dose would be on Saturday.
She hadn't had a fever since Wednesday night when the hospice
nurse was visiting, and even then it was only 100.1. The dr
said no x-rays and no more antibiotic (after her last dose
on Saturday). Also he said she could go to daycare.
Mom took her in about 1pm, so she wouldn't be at daycare the
whole day, but would get some more social interaction, and
mom went to work.
Claire had a nice day at daycare, and came home to play for
a little while. She was very good and hardly fussed at anything
until she was hungry. She ate, got a nice warm bath, ate more
and finally dozed off around 9pm.
(Note:
while this pix looks like a nice big, wide smile... the smiles
are still few and far between. We got really lucky with this
one!)
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February
5
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Claire
slept well until close to 3am when she woke up hungry. Mom fixed
her 4oz of shake and she drank that in about 45 minutes. Still
hungry. Mom fixed her 3oz of formula/pedialyte to wash it all
down, and she drank 2oz before finally going back to sleep around
5am. While mom showered, Claire hung out in her carseat in the
bathroom to soak in all that nice humidity.
She was up around 9am and hungry, so mom fixed her 4oz of pedialyte
and juice. She got that done by 10am... Claire isn't usually
in much of a hurry to eat.
She still has her loose, loud cough, but seems to be eating
well.
She had her first bath in a couple days around 5pm (mom didn't
want her to get a chill). She ate really well all day, including
about 7 ounces in the evening and went to bed around 10pm. |
February
4
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During
her early morning hours, Claire had a very small fever at 99.3,
so mom gave her some infant Motrin... also thinking it would
help her sleep better. Mom woke Claire at 9am to eat more. Mom
fixed her a shake and she ate 2oz by 10am, then mom thought
a break would be good. Claire started fussing around 10:30,
so she had another ounce and went to sleep on mom's chest. Eventually
mom put her on the bed to get some solid rest so mom can get
a little work done. Mom has some oxygen blowing on Claire as
she sleeps, so she won't have to strain to breathe. Her color
is really good and she seems to have some energy and wants to
be held (who can blame her for that).
Mom woke Claire up at 2pm to eat.
She was hungry and ate 3 1/2 oz of shake and then another 3oz
pedialyte/formula by 5pm.
Claire had the hospice nurse come by and check in on her. During
her visit around 5pm, Claire had a temp of 100.1, so mom gave
her some Infant Advil. It seems like it just shot up quickly,
and she didn't want to take a chance of it getting too high
before the Advil 'kicked in'. Mom cancelled all Claire's other
therapies and appts today. She suspects Claire will have an
Xray on Friday to see if she has cleared up any. Claire drank
another 4oz of shake by 8:30pm and mom put her in her bed. She
isn't sleeping, but mom didn't want to take a chance of her
coughing and throwing it up, so she is kept in a nice quiet
place. She also got her second dose of antibiotic tonight, along
with heart meds, anti-seizure meds and decongestant. If she
doesn't gain weight from the shakes, she surely should be gaining
weight from all the meds. She finally fell asleep around 9pm.
Thanks everyone for your prayers. |
February
3
46 weeks
8lbs,
6oz
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Claire
and her daddy went to bed at 1am, then Claire was up again just
after 2am and felt warm to mom... mom changed her diaper and
checked her temp. It was 101.5, so mom gave her some Infant
Advil, put a cool wet washcloth on her head (kept changing it
around) and fed her pedialyte until her temp came down. It came
down to 100.8 by 3am, so mom put her back to bed... Claire fell
right asleep.
She woke up again at 7:30am, her temp was up again to 101.1
and mom gave her some Infant Motrin and about 2oz of pedialyte.
Around 9:30, her temp was up to 101.3, so mom gave her more
Infant Motrin. Claire has a nasty cough - paired with the fever,
so mom will have her on Pedialyte all morning, and maybe most
of the day, depending on how she is doing. Claire won't go to
daycare today. She has an appt for RSV shots, so mom needs to
call them to reschedule.
Claire went to see the dr and he sent her to get blood-work
and X-rays. At the dr office, she had a low-grade fever -- and
her weight had gone down to 8lbs, 6oz. The radiologist read
the X-rays and called mom back (from the parking lot)to get
more 'pix' of Claire. She knew about T18 and was amazed that
Claire was doing so well. She talked with mom a while and was
truly interested in Claire's story. That made mom happy.
Around
4pm, mom got a call from the ped who said she had pneumonia,
to start with antibiotics. The dr office called them in and
dad picked them up around 6pm, but they weren't ready - he waited
30 minutes and finally got them.
The ped also said to let hospice know and if she gets worse,
everyone can make decisions together about hospitalizing her,
etc.
The pharmacist recommended talking to the ped cardiologist since
it could conflict with one of her heart meds. Mom was able to
reach the ped card and he said her doses of the heart meds were
so small that it wouldn't affect them. He's great, mom was able
to call him and get a quick call back late in the evening. Claire
is truly blessed to have such terrific doctors.
Claire went to sleep around 7pm, but mom had to wake her for
her antibiotics. She quickly fell back asleep until around 11pm.
When she woke, dad fed her about an oz of formula with a splash
of pedialyte (for flavor). He brought her to bed around 1am,
and mom continued to get her to eat until about 4am. She had
another oz of formula/pedialyte and then 2oz of shake after
that. Mom thought that was pretty good considering how very
tired she was. |
February
2
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Claire
slept well last night. She woke up for a 5am feeding and mom
gave her some Pedialyte and she went back to sleep. She only
drank about an ounce.
She went to daycare and finished off 3oz of Pedialyte and 2oz
of bananas and formula... then she had another 4oz of formula
with pedialyte mixed in.
She came home and drank 5oz of shake, but threw up maybe 2 oz
of it... mom thinks her congestion is bothering her. She had
Early Intervention this evening and her nurse and mom decided
with 2PTs a week and starting OT, they will hold off on EI for
a little while to see how things go.
Claire was asleep at 7pm and up at 11:30 for a snack. She went
back to sleep after 2-3 oz of shake, then she was up again at
midnight and her daddy watched her until about 1am. She slept
part of that time while he got some work done. |
February
1
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Claire
slept well last night. She went to bed when mom and dad went
to bed at 2am and then slept until 9am when mom woke her for
church. She snored through church and came home and napped even
more when dad watched her and mom took a nap. She was awake
for a while in the evening to play with mom, then back to sleep
on the blanket on the floor after PT with mom. Mom put her in
her nicely warmed bed around 8pm and Claire woke again around
11:30pm, as if she were hungry. Mom made her a shake and dad
took her to feed her, but she didn't eat more than an ounce,
and fell asleep on his chest, so he put her back on her blanket
on the floor so he could finish some laundry and fell asleep.
Around 2am they both went stumbling into bed. |
January
31
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Claire
slept well after 11pm until she woke mom up at 6am for some
breakfast and meds. Then she went back to sleep until 10am,
and let mom sleep in. Dad too.
She had a nice lazy day, playing with mom most of the day and
being good while mom cleaned up around the house.
In the evening, friends came over and Claire stayed up and watched
everyone play Cranium until 1am. She was not sleepy, but finally
went to sleep when everyone left. |
January
30
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Claire
had a fun night. She was up for most only some of it ... She
woke up at midnight and kept mom and dad on their toes until
about 2am, when she finally dozed off. Dad got up with her around
midnight and shortly afterwards she threw up - dad asked for
a little help. She probably just ate too much at that point.
Mom settled her down and they went to sleep. She was up for
daycare
Claire had a nice day at daycare and had a wonderful lady, a
hospice volunteer, come and stay with her and her brother and
sister while mom and dad were able to go out for dinner. The
kids had a wonderful time making gummy bears and watching movies.
She even bought the kids happy meals.
Mom and dad got home before 10pm and everyone was ready for
bed. |
January
29
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Claire
was up at 12:30am until 2am. She drank a banana shake and went
back to bed. Mom woke her up in the morning to get ready for
daycare. Dad took her in. Looks like she may have actually found
routing the family can live with. Just getting up in the middle
of the night for a snack. Mom doesn't mind if it is only an
hour or two if it means she is happy and eating... mom loves
fattening up that little Miss Claire. |
January
28
weight
8lbs, 13oz
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Claire
was up with her dad until 1am. At 1:30am, mom was up with
her until 3:30am and she was eating her shakes. She finally
settled down. Claire was very congested with a very runny
nose. Just as mom would clean her up and 'suction' her nose,
it would be runny again. Poor dear.
Claire had a busy day.
She went for her weigh in this morning, her last official
(ped) weigh in was at 9 months and she was 7lbs 11oz. Today
she was 8lbs 12 1/2oz. That is over a pound in 7 weeks!
After the weigh in Claire was scheduled for Music Therapy,
but they called to cancel. She had Physical Therapy and then
Hopsice coordinator, but the CHS coordinator cancelled, and
so did the Hospice nurse. Claire was still quite worn out
by the PT, so it was probably okay with her to take a short
nap in the afternoon and let mom get her work done.
Claire had a nice evening. A big dinner, bath, more dinner
then mom put her in her bassinet and she fell asleep around
9pm. So did mom.
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January
27
45 weeks
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Mom
got some work done this morning as Claire slept in until 8:30am.
Mom woke her up and gave her meds and a bath. She finished off
some Pedialyte and juice and mom made her a milkshake for the
road, and dad took her to daycare.
Mom picked up Claire afterwork for her photoshoot for her 10
month pictures. Mom was very pleased with them and think they
got some smiles, tho Claire didn't mean for the smiles to get
out - and certainly didn't seem to feel them, they were captured
all the same.
Mom and Claire went to bed at 9pm and Claire was up at midnight
all congested. Mom had a bottle ready, and dad fed her so mom
could get back to sleep. |
January
26
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Claire
was up until 3am. Mom had been sleeping since 10:30pm and Dad
had been up with her. At 2am, he informed mom that he was exhausted
and she offered to take over. He gave Claire a bottle, but she
wasn't happy, so mom took over. Mom gave Claire some Mylacon
and 2oz later, Claire fell asleep. Mom had to wake her in the
morning for daycare. Just as dad opened the door to leave with
the kids, the skies opened and it started raining something
fierce.
Claire has pretty much decided that there is too much going
on to sleep. So she has been having many awake hours... She
powernaps for about 20 minutes each day, maybe twice a day,
and falls asleep for about 5 hours in the wee hours of the morning.
Mom thinks that something is bugging her and she just can't
sleep. Perhaps a BM, perhaps a series of very mild seizures
that go unnoticed by everyone but Claire, and is enough to wake
her in her sleep. To look at her she seems rested, but it can't
go on for much longer... and then everyone will be in for a
long sleepy night.
Mom gave Claire some shake and she drank really well. Then she
fell asleep in her boppy pillow. She had her meds, but no bath.
Mom put her in her bassinett. Since she fell asleep on her back,
mom put her on her back, and Claire snored something awful.
Mom decided it would be hard to sleep with that loud snoring
baby, and thought she would put Claire on her side, but Claire
had rolled to the side already, and the snoring was more of
a loud snore than a 'shake the house' snore. There is no quiet
snore with Claire.
Claire proceeded to wake up about every hour. She would go back
to sleep within about 5 minutes... but getting up every hour
took it's toll on mom. |
January
25
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Claire
hasn't been sleeping much. Few BMs too. They may be related.
Mom has slowly increased her dosage of seizure meds to what
the dr told her to do. Mom would love to hear she is off the
meds altogether, but perhaps that day will come. For now, she
is just happy to have the med working properly.
Claire went to bed around 9:30 or 10pm. Mom followed soon after.
Another hour or so later, Claire was awake and sweating immensly.
Mom asked Dad to changer her, as he was still up watching tv
and working on some laundry. Mom thought he changed her and
put her back down, but evidently, he kept her out watching tv
with him. What a great daddy Claire has. And she was so happy
to have him all to herself, she just couldn't sleep! |
January
23
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Claire
was up around 2am for a few minutes. She had been sweating,
so mom changed her clothes and gave her a few sips of Pedialyte
and she went back to sleep.
Mom woke the Peanut up this morning for daycare and Claire left
with dad and the other kids. |
January
22
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Dad
came to bed with Claire around 1am. Mom held her with a bottle
of pedialyte and dozed off. Mom woke up with Claire and noticed
Claire looking up at her with her big blue eyes... as if to
say, 'mom... hello... bored here!'... but she didn't fuss and
eventually she went to sleep, around 2am. Mom put her back in
her bassinet then and everyone got a little rest.
She was awakened by a hurried mom and swept off by an equally
hurried dad to daycare.
She had a good day. Her care giver tried putting pedialyte in
the formula. Lately, Claire hasn't cared much for her formula,
but with the Pedialyte in it, seems to just gulp it down. So
she gets plenty of fluids at daycare, and solids at home. She's
been eating really really well! Mom is proud and thinks she
is maybe over 9lbs. Need to get her to her weigh-ins. |
January
21 |
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Claire
slept through the night - again - yeah!!. She got up and had
her meds and pedialyte/juice and another bath; mom wants her
clean for her appointments today. It took Claire a while to
finish the juice, and once she was done with that, she had a
3-4oz tub of bananas with a little formula... downed that quickly.
Can you say, "Growth Spurt" -- well, with Claire,
that is a term that mom uses loosley. Then the physical therapist
came to see her so she had to be content with all that food,
but once she was done with PT, she downed another 4oz of milkshake...
still fussing for more, but mom was hesitant... thinking she
didn't want to see Claire's food again, and put Claire down
for a little nap around 3:15pm. Mom won't let her sleep more
than an hour, as that got her into trouble on Sunday when Claire
had a nice long 3 hour nap and was awake the entire night. |
January
20
44 weeks |
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Claire
slept through the night. She got up and had her morning routine
of meds, pedialyte and face washing, then off to daycare.
She ate as much and as quickly as her mom could feed her, then
a nice warm bath and into her warm bed. She still likes the
bottle in her mouth when she goes to bed, so mom allowed that. |
January
19 |
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Claire
was awake the entire night until about 7am. Dad gave her more
banana shake, but it wasn't enough to make her tired. Aside
from the one nap around midnight that was 2 hours long, she
pretty much stayed awake until morning.
Mom noticed when Claire was in her playpen, she was trying so
hard to roll over. She may have done it, but mom had her wrapped
tightly in blankets to be sure she was warm (Claire only sleeps
when she is really warm).
At 6am, mom gave her her meds and by 7am she went back to sleep,
so did mom and dad, until about 11am. Since they were staying
with friends, Claire's brother and sister were well entertained
and fed.
Claire did really well coming home on the car trip, but didn't
sleep, just hung out and counted her fingers. Claire and her
mom went to bed around 9:30pm. Claire's tummy was really full,
so full it looked unnatural, but she had just eaten about 6-7oz
of shake just before her bath, so it seemed justified. Mom put
her in her bassinet while Claire was still awake, hoping she
would be able to get herself settled in and asleep. She wasn't
too happy with that idea, and mom mixed up 2oz of prunes/apples
and about 1/4oz of formula and Claire ate that and fell asleep
just as she was finishing it up. |
January
18 |
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Mom
woke Claire in the morning for her meds. Claire had a nice long
nap, about 3 hours, in the middle of the day and was up by 5pm.
Mom put her to bed in the evening -- she finally drifted to
sleep around midnight, but was up at 2am... Claire wasn't too
crazy about going back to sleep when there was fun to be had,
so eventually, mom took her out where dad was playing a marathon
RISK game with friends, and mom went in to get a bit of sleep.
About 1/2 hours worth. |
January
17 |
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Claire
had a pretty good night. Today they go to Georgia to stay with
some friends over the weekend and watch the playoffs on Sunday
-- big party.
She went to bed around10:30pm. but was up again at midnight
for a snack. |
January
16 |
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Claire
was up at midnight until about 3am. Good thing she and mom went
to bed around 10pm, so they had a bit of a nap. She was up again,
bright and early to go to daycare at 8am. She left with her
daddy and her brother and sister on the morning 'train' (dad's
minivan).
Claire goes for a weigh-in today, and her sister goes for a
second flu shot.
Claire's daddy didn't have time to pick her up for her weighin-
so mom will have to reschedule. |
January
15 |
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Claire
slept through the night - no bottle, no pacifier for the second
night in a row. Mom slept too.
The ped office called and said mom could increase Claire's dosage
by 1/4. Claire seems to be doing so well, so mom will talk to
the dr to see what he thinks about waiting. Mom isn't sure what
would happen if she did wait to increse the dosage. Mom doesn't
like giving too much medicine, esp if Claire's seizures seem
to be under control, but will do whatever the doctor prescribes.
She went to daycare bright and early and had a great day, then
came home and started fussing in the evening. Mom wasn't sure
why, so she gave her a bath and lots of dinner. Claire drank
about 4oz of shake and fell asleep, for about 2-3 hours, then
was up again at midnight. |
January
14 |
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Claire
slept through the night - no bottle, no pacifier. Mom was so
very happy.
She had an Early Intervention appt today, but the EI cancelled
as she had a little cold. She had a Hospice appt. The Hospice
nurse cancelled - also a cold, but the family coordinator came
by to visit. Claire also had Music Therapy today, and mom helped
out with that. It was fun watching Claire's reactions to different
sounds, vibrations of the guitar under her feed and mom stroking
her arms, legs, head, etc with changes in the beat of the music.
Claire had a really good day eating. She drank 4oz in the morning
of Pedialyte and Juicy Juice, to keep her loosened up. Then,
she drank about 15+oz of milkshake throughout the day, along
with a nice long morning nap (so mom got a lot of work done).
Dad came home to babysit for a bit while mom went to a meeting
for work for a few hours.
In the evening, Claire had her dinner, lots, and fell asleep
in mom's arms around 7:30pm -- just too darn tired and full,
even skipped her bath. It may have been too early to put her
to sleep, but mom wanted to get a bit more work done and get
to bed early herself. |
January
13
43 weeks |
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Claire
was up pretty much the entire night. She was fussy and used
the bottle for a pacifier. She wouldn't take a pacifier, just
wanted the bottle in her mouth, didn't really want to drink
anything. About every 15-30 minutes, she would wake her mom
with fussing and want her bottle back in her mouth.
During the night she really was a good baby, easily comforted
with a bottle, she just didn't want to sleep. Mom had her wrapped
up in two blankets, she even had her sleeping on the bed for
a while, but once put back in her bassinet, well, Claire didn't
want any part of that. Claire is quite clever and seems to know
how to get what she wants... mom's full attention!
Around 5:30am, mom woke dad and asked him to take over so she
could try to get 2 hours of sleep in. He ended up falling back
to sleep after giving Claire a bottle and everyone in the house
overslept. Kids were late for school, complete mayhem. :o)
Claire went to daycare and mom off to work after mom and dad
dropped dad's car off in the morning for some work. Mom had
her orange juice, vitamin and cup of coffee to get her brain
started. Meanwhile, while holding Claire, Claire looked up at
mom wanting to crack a smile... as if to say, 'what's the problem
mom, didn't we have fun last night?'. She was bright eyed and
ready to play. Her little cheeks looked so chubby (well, she
did spend most of the night eating) and she had wonderful color.
Let's hope for a more restful night tonight! Claire didn't sleep
much at daycare.
In the evening, Claire was trying to sleep, then she would wake
up with a wail... loud (for her) cry... then fuss for 1-2 minutes
and fall back to sleep.
Mom decided she was constipated and gave her a suppository after
her bath. She had a good bm when mom went to give it to her
and settled down, and mom gave her some Advil in case it was
something else, along with some gas medicine to cover all bases.
Claire really needed some sleep, and it wouldn't hurt mom any
to get some too. |
January
12 |
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Claire
was up about 3 times during the night. Mom kept giving her pedialyte
and she would go back to sleep. Dad wanted to know what the
problem was, as she had been sleeping during the previous nights,
and mom happily said, 'She is back to her old self'. They chuckled.
Claire went to daycare today. Mom told her caregiver that she
was going to have a fun day with Claire today.
Claire had a fun day and ate a lot. She played most of the day
and only took a 30 minute nap the entire day.
In the evening, same thing. No napping, just wanting to eat
and look around, then eat s'more. As she was fussing for another
bottle, her sister decided to have a 'melt-down' after getting
in trouble for grunting at her dad. She was in time-out crying
loudly (as Claire fussed) and then her brother was 'dragging'
around not doing what he was suppose to be doing... just 'lollygagging'
and forgot to mention the homework he needed to do until around
7pm (and, needless to say, mom and dad forgot to ask). So he
crashed-and-burned around 8pm... that means every little thing
upset him... mom just got dinner ready and sent the kids straight
to bed after bath, dinner and a little dessert... they had a
big weekend and are still recovering.
After her brother and sister were in bed, Claire got her bath
and her mommy time. Dad had gone to a basketball game.
Then mom fed Claire and put her to bed and mom followed around
10:30pm. She slept maybe 15-30 minutes until Dad got home, but
he was so swamped with chores himself, so mom got up to get
Claire, and she doesn't recall going back to sleep more than
15-30 minute increments the entire night. |
January
11
11 months |
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Claire
stayed up until about midnight, when she decided that not much
was going on around her and sleep would be nice. She slept until
9am, which was nice for mom and dad. She was so good for dad
for his 40th birthday, and appears to be stabilized with her
apnea/seizures. She had a lot of alert hours, but not much sleep.
She was awake for much of the day until about 6pm, she finally
took a small nap. Mom woke her at 9pm to give her a bath, but
Claire wasn't too interested in staying awake for that, and
she drank more formula/cereal/bananas, fussed some, and after
some pedialyte decided to rest on mom, then off to her bed,
which tonight is still set up in mom and dad's room. |