Journal -- Eighteenth Month
woke Claire this morning to start breakfast. Claire ate about
3oz of shake before being whisked off to daycare. First stop
was taking kids to school, as dad had an MRI for his ankle this
morning at 7:15am. Mom was frantic, and given that Claire's
sister was in timeout much of the morning, mom opted to give
her cereal 'on the way' to school - done only on rare and desperate
occasions. Of course, they ran late, even forgetting Claire's
bottle, and halfway to school realizing they forgot Claire's
sister's breakfast. All was not lost, as her teacher said I
could bring her something and she could eat it there. After
dropping off kids, mom got cereal for sis, and dropped that
off. About that time, dad was on the phone and around the corner
and offered to take Claire to daycare (across town) so mom could
get to work... whew...
Claire had a nice day at daycare. Yesterday, her caregiver noticed
a skin scrape that looked like a blister popped on Claire's
heal. Mom hadn't noticed it before, and they suspected it was
caused by the metal plate that buckles her carseat straps. Claire
is also battling a face rash again... perhaps heat, perhaps
yeast, mom isn't sure, but constantly washing (and gently patting
dry) Claire's face... and then there's that pitiful thumb. Don't
know how else to put it... Claire has her thumb in her mouth
24/7 and the nail looks like it is infected. Mom put gentian
violet on it, as it is an antiseptic and used for thrush, mom
knows it can still go in her mouth. So now the thumb is purple.
Mom also puts a sock on it every other day, to keep Claire from
putting the thumb in her mouth...tho frequently the sock goes
in her mouth and mom has to put on a new one. On a good note,
mom has a use for those 'odd' socks that have no match... there
are plenty of those, esp since many of Claire's socks are hand-me-downs
from her sis.
Now the family has Ivan to deal with. Working on a Plan B to
evacuate if necessary. Deciding what will go and what will stay,
including the family dog (who will go, but will be in dire need
of a bath and dip as he is typically an outside animal). It
is stressful to see what happened to mom's family, and most
still without electricity... a week later... and to think of
it happening to us. Mom tries to rationalize that if no power
is the worst of our problems (house and family are fine), then
they would be pretty darn lucky. Saying an extra prayer for
survivors and victims of September 11th, anniversary tomorrow.
woke Claire this morning.. she was one tired little baire!
She was ready for daycare and drank almost 6oz of shake before
mom packed her up. She has developed that nasty ol' rash on
her face again. The last two nights she slept on her left side,
and the left side of her face is where the rash developed. At
daycare, she drank 8oz and started a 9oz bottle, which she finished
once she got home in the evening... that's 23 oz of shake, and
it isn't even dinner-time yet. Mom is thinking the pressure
from the hurricane may have made her uncomfortable, including
the added congestion and lack of appetite too.
Claire's older brother had football practice, and Claire's sister
played with her tea set most of the evening. It was mac and
cheese for dinner, as it got late really quickly and the kids
needed to be in bed before 8pm again... well, that didn't happen.
Claire's brother had to re-do his math homework, and her sister
finished her dinner and went straight to bed due to the late
Claire drank another 3-4 oz of shake, then mom put her in her
crib. She didn't seem hungry, but her pitiful little thumb was
in her mouth and soon she was asleep.
slept through the night. Mom woke her for meds and fed her 4oz
ped with formula and Claire went back to sleep. She has a hospice
visit this morning to start off her day of appointments.
Mom got a call from her parents saying they were home. The yard
was an unbelieve-able mess, they knew everything in their refridge
and freezer was 'sour' but on a good note, the electricity was
on. They were going to take a nap, and then decide what to tackle
first. Three palm trees, as big as you can imagine, had fallen
over. They'd been in the yard since mom was a little girl (a
very very long time) and that alone would be a day's work getting
them cut up and hauled off. The house was in great shape tho.
Mom spoke with Claire's grandparents later, after their nap,
and was told the yard looked like a giant lawn mower ran over
the whole thing. Claire's aunt was giving mom more of a play
by play as she tried to hop over trees and branches to get to
the back yard to report on the pool and fence... it sounded
like an absolute mess.
Claire was visited by hospice in the morning. She slept for
a while, woke up and her hospice family coordinator held her,
only for her to fall asleep again in her arms. She had a 4-5
oz bottle in the morning and after meds too, she was just a
tired little baire.
Claire went to PT today. Her therapist was amazed at how nicely
her head stayed aligned with the center of her body and she
was looking down frequently. She held a rattle for short periods
and even brought her chin down a few times as she was in a sitting
position. Her PT stretched out some of her neck, shoulder and
chest muscles too.
PT, mom went to pick up the kids, as homework gets piled on
when they have half days, like they had today. Mom and dad had
them bathed, fed and ready for bed by 7:30pm. Hopefully, there
won't be any more meltdowns like the 'rents (short for parental
units) experienced this morning. Mom left for a home room parent
meeting just before 7pm, and set the timer with strict instructions
that when it went off (around 7:15pm) the kids were going to
bed. Mom knew there would be at least 15-30 minutes worth of
stalling during the brushing of the teeth ritual, and potty
trips, prayers and 'Will you lay with me?' which cannot be turned
down. Dad was in excellent form as mom returned and he was able
to report the kids were in bed like clockwork. He was sitting
watching tv with Claire and feeding her, reporting also that
she was very fussy. Mom will take over soon, but had some room
'mom' things to tie up first.
Claire was a dream tonight. She drank 8oz of shake and fell
asleep finishing up a bottle. Mom put her to bed after her meds
(mom gave them to her and put on her canula halfway through
the last bottle). She was in bed around 11pm.
slept through the night until 4:30am and was up for breakfast.
Mom was concerned about her as she wasn't breathing too freely
and she still had her very loose cough. Mom called hospice and
said she could bring Claire there, as they were going to visit
Claire's uncle and hospice was close by his home. The hospice
nurse met mom and Claire at the hospice house and said she did
sound congested, but more in her left lung. She also took her
O2 level and said she was at 93%, much higher than mom would
have guessed, and probably pretty normal for Claire, tho a typical
person would be 98-99%. It was fairly well agreed that with
no fever, she was in good shape. The nurse said she'd contact
the dr and call mom back. The drs office agreed with the idea
that with no fever, she doesn't likely have pneumonia, but keep
an eye on her and keep her eating fluids.
Claire went and hung out at her uncle's home and her aunt spent
a lot of time with her, feeding her formula with pedialyte for
taste. She drank about 4-5oz and when Claire got home, drank
another 2 bottles of 4-5oz during the rest of the day. Everyone
gathered at Claire's home in the evening for steaks, as they
were going to return home to Melbourne in the morning (leaving
at 3am to avoid traffic and backups), and last word was they
still had not electricity. They called this their last supper,
and everyone wanted steak!
During the visit, Claire's aunt was holding her and mom was
able to take a short
video with her(Claire's aunt's) digital camera.
The family said goodbyes shortly after dinner and birthday cake
(one of Claire's cousin's is having his 15th birthday on Thursday)
and Claire's cousins, aunts, uncles and grandparents left for
her uncle's home as they were leaving together in a caravan
first thing in the morning from there.
Mom was sad to see them go and wished there was so much more
she could have done for them. She is worried about what they
will find when they get home and wonder how long they will be
without electricity. Most of them have generators (brand new
ones) but with gas supplies being very short, generators can't
do a lot of good. They'd been without electricity for about
a week now, so everything in the refridgerator and freezer will
have to be thrown out, except maybe the occasional soda and
Claire's mom had forgotten to give Claire her meds... with all
the craziness going on, and remembered at 7pm, so she gave them
to her then. Mom put Claire's canula on her and she went to
sleep shortly after mom put her in her bed. She is such a good
was up once around 3am and drank a little shake, then back to
When the family woke up, an even larger branch was on the driveway,
you guessed it, where Claire's daddy usually parked his van.
The storm didn't seem to be too bad, as mom watched closely
to see where the bands were. Claire's uncle (who was visiting
town) wanted to go out for oysters, and it appeared that everyone
was a bit stir-crazy from being inside, so mom agreed to go
meet them all for lunch. (Mom doesn't do oysters or any seafood
for that matter). They all waited until a squall passed through
watching the weather channel, then set off for lunch. The weather
was relatively calm, and a light drizzle. Not watching much
local news, but hearing it on the radio, Grandpa teased mom
that the guy on the radio said that police didn't want anyone
driving in the storm, a little late as they were halfway there.
At the restaurant, everyone was pretty down. Claire's uncle
hadn't heard anything about his home, as he lives on a barrier
island and was pretty stressed about the whole thing. He has
insurance, but that doesn't make any of this go away. He also
knows his car won't make it all the way back to his home on
one tank of gas, so he's got to take gas back with him, and
isn't thrilled with the idea of traveling with a gas can in
or on his car... but everyone is convinced there will be gas
along the way, esp once they reach the FL turnpike.
Mom saw a squall, it looked like it was coming towards town,
so they paid their bill and set off back home. It was windy,
but not too much rain. Once home, it was more of the same, the
storm came ashore just 20 minutes due south of Claire's town,
and everyone was sitting around and watching the weather channel.
Nothing spectacular, and everyone was very thankful for that!
Mom received a call from Claire's uncle who stayed and he was
able to get to the barrier island and check on Claire's other
uncle's home. Everything looked good. Mom called and told him
and he was very relieved.
Electricity stayed on the whole time and very little rain and
Claire had a nice evening, but wasn't drinking very well. Her
grandma finally got about 8oz of shake in her in about 3 hours,
and about 2-4 oz came back up. She drank only another 2oz before
going to sleep... with her canula.
Claire had a good night. She slept until 5:30am with her canula
on and fussed like she wanted her bottle. Mom fixed her one,
gave her her meds and she eventually went back to sleep.
Today was a day of preparation. Mom figured that they often
lost power with summer thunderstorms with all the trees in
the city, and so few storms to keep them clean, so she planned
for the electricity to go out within the next 24-48 hours
as Frances makes her way across the Gulf and up towards the
Florida panhandle (northwest Florida). After church (Claire
finished 4oz of pedialyte in church), mom filled up the gas
tank, turned her fridge and freezer to its coldest setting,
went to the grocery store an bought nothing that was frozen,
and some cold cuts that would keep in the cooler (dad got
4 bags of ice) and a few other small errands. She came home
and wanted to clean a little, and her uncle said they were
getting dinner and everyone should go over for the last 'swim'
before the 'cane hit. Claire was just finishing up another
8 oz bottle of shake. There was so much to do, and as there
was a huge squall that came through just as the family had
finished up preparations. A large branch fell right next to
dad's van... and it kinda hit home that this could get bad...
but still thinking the best, preparing for the worst.
After the squall, the radar images looked clear for a good
while, so everyone went over to Claire's uncle's home. It
was fun, everyone had something to eat and watched the weather
channel along with some college football. Tensions had been
high for the past couple days as family watched their city,
Melbourne and Indiatlantic area, get blown around on National
Claire's aunt enjoyed her tonight as she fed her 7oz while
Claire and her family were visiting. It was mostly applesauce
with a little formula mixed in. She was fussy again tonight.
Claire's sister will be sleeping with mom and dad tonight
too... probably not much sleep in store for anyone... but
for one night, they can all handle it.
had a good night, not up too much, a little better than the
She spent much of her day being visited by family in town, and
then went to her uncle's home to see many of them again and
have a nice evening visiting. Family members were stressing.
The topic of the night was how very long it was taking for the
hurricane to pass through, and then the weather folks said it
was 'stationary', and the frustration was increased. They wanted
to go back home and see the damage, and they couldn't... they
had to wait and watch the distruction on tv with the rest of
the nation as their city was hit over and over again with the
front side of hurricane Frances, and then again with the back
side of the 'cane.
In the evening, Claire was so very sad. Mom couldn't figure
it out, so she gave her some mylacon for gas... still nothing,
so after about 15 minutes, she gave her Tylenol, in case it
was teeth... Claire layed on mom's chest with her canula and
mom hummed to her... she eventually went to sleep (actually
mom did, and eventually Claire did too) and then mom put her
down in her bed. Claire didn't have a big day eating today.
Claire had a great night. She was up once and drank only an
oz of shake and went back to sleep. Having her canula on really
seemed to help her rest comfortable. Dad got the kids off
to school this morning. It is "A" week in Kindergarten
and Claire's sister needed "A" words for her ABC
bag. (They fill the small bag with items starting with the
letter of the week). The first two items on her list were
Barbie Dolls... Ariel(from The Little Mermaid) and Aurora
(Sleeping Beauty).. after mom approved, she proceeded to name
the rest of her Barbies with names that began with "A",
but mom said the had to 'come with the name already'... she
accepted that, and eventually Aurora was even taken out of
the bag... she ended up with an airplane, Ariel, Army man
(no guns as he was more of a commander), and a small bag of
three Animals. Mom wanted her to take a small container of
applesauce, since they had no apples, but was over-ruled by
The hurricane was expecting to increase in strength and not
directly hit Melbourne, FL., but rather hit closer to West
Palm Beach, FL. Can't say that is good, as anyone who gets
this storm will lose much property, and hopefully not lives.
Mom woke Claire and noticed her canula was only in one nostril.
At least she was still getting some O2, and sleeping so well
mom knew she needed her rest and hated to disturb her. Grandma
was ready to feed her with bottle of shake and cloth diaper.
Claire will get her bath once she has meds and breakfast.
Claire had a nice day today, but not a big eating day at all.
Mom gave her a lot of shakes with pedialyte instead of formula
as she has been having a nasty, loose cough, and the formula
probably doesn't help any.
Claire was in bed after 10:30pm, her grandma fed her, she
had meds, put on her canula and was out like a little light.
was up fussing at least once an hour. Mom would just get to
sleep and there she'd go again. She seemed a little hungry,
but still went right back to sleep after her single cries.
She was up in the morning and mom gave her 4oz of Pedialyte
Mom got word that her family had arrived in town at 8am (they
left Central Florida fleeint the hurricate at 3am to be sure
to be on clear roads without a lot of traffic). Mom was very
excited to have most of her family here, to for all the wrong
reasons. And she was sad that her brother-in-law stayed in
Melbourne. Mom has another brother-in-law who wouldn't leave,
and so, mom's sister wouldn't either, and they have an older
daughter. Because of that, another sister, who lives in Orlando
also stayed so they could meet at the home in Orlando. Please
keep them all in your prayers, today the storm's path doesn't
look good. Mom has 4 sisters and two brothers. Two sisters
came up and one brother (with their families) and one brother
lives here leaving two sisters in Orlando. Her sister who
lives in Orlando was there for hurricane Charley a month or
so ago, so she can't be too pleased about being there for
hurricane Frances, twice a big as Charley was. Claire's grandparents
came too. Dad's family are in South Florida, and opted not
to come up, they were planning to be here on Wednesday, by
Thursday the roads were just getting too crowded to make the
trip up. That sums up the family and mom spent part of the
early morning taking a head count to see what everyone was
doing, where they were going, etc. Admittedly, she was happily
surprised to hear at 8am that most of the family was only
15 minutes from her home.
Mom went to work as everyone was meeting at her brother's
home as they came into town. Mom met them for lunch later,
as she was at work today. Later, mom picked up Claire from
daycare, she'd only had 7oz and mom was a little concerned
about her eating. Mom brought her home and fixed Claire her
favorite shake, bananas and berries mixed. She gulped down
about 4oz and they headed over to mom's brother's home to
meet up with the rest of the family.
Dad took Claire's big sister over to her uncle's home so she
could swim and show her other uncle (who taught her swimming
over the summer, and was here escaping the hurricane) who
well she could swim now. Amazing what a couple months can
do! Dad took Claire's big brother to flag football practice,
his first practice, and he loves to follow football. The coach
said he could be quarterback, so he and dad are excited. Mom
thought he would be great at receiver, she's seen him catch
with dad, but either position will be fun for him.
In the evening, Claire's aunts fixed dinner for everyone and
it was yummy ziti! With the kids still having school in the
morning, mom and dad had to get them home and brought grandmma
and grandpa home with them for the night. They slept in Claire's
room, as Claire is still sleeping in mom and dad's room, and
the sibs rooms are a real mess.
It was all eveyrone could do to stay up to watch the president's
acceptance speech a the convention, then catch the latest
hurricane update (it lost speed and strength... from 140mph
sustained winds to 120mph sustained winds, and moving at only
9mph... at that rate, it won't be in Tallahassee until likely
Monday sometime, but at a tropical depression strength). It
has been a long day, and Claire finished up with only about
17oz including Pedialyte, so not alot of calories. Mom put
her canula on her during the night to help her sleep better....
and help mom sleep better too.
had a rough night as she was coughing a lot and crying with
each cough. She drank pretty well today, nearing 28oz of shake
for the day and very alert. She had OT, and MT today. At OT,
decided to skip the splints, she is opening her hands pretty
well on her own, and the therapist didn't want to limit her
with splints. She had an infant toothbrush (that goes over
her finger) and put her finger in the back of Claire's lower
right bottom gums in the back and pushed down just a little
so Claire could bite down... then she put her other finger
on the outside of Claire's cheek and gently squeezed and pulled
the cheek towards her. She did this with her upper and lower
gums. She wants to stimulate Claire's mouth for feeding purposes.
She also put a Nuk toothbrush in her hand and Claire brought
it to her mouth and put it in her mouth. Mom was impressed.
Mom has big hopes of her one day feeding herself by picking
up food and putting it in her mouth. Right now, sitting up
would be welcomed also.
Later her hospice nurse came by to see her. She weighed her
in at 11lbs 11.5 oz. Claire had a pretty evening as one of
daddy's friends came over and wanted to hold her all evening.
He also was able to get more good smiles out of her, something
he does well.
Claire had a great night. Nose didn't run very much at all
and she slept relatively peacefully.
She woke mom up around 6am, she was hungry and mom changed
her diaper and put on her play clotehs, then gave her her
meds and then bottle. She drank about 4oz before dozing off
before going to daycare.
slept through the night, but not mom. She was worried about
her little Peanut and wondering if she was breathing well.
Mom figured since she was sleeping, she probably was, but
was still up frequently to check on her and be sure her oxygen
was close enough to her. Mom considered putting on Claire's
canula, but her nose has been running so much it would likely
get clogged, and besides, Claire was sleeping and mom didn't
want to wake her.
Mom did get her up in the morning for her meds and shake.
She drank 4oz and had a nice big BM before heading out to
her daycare, where she finished another (almost) 4oz of shake.
She had PT today at noon and did really well. Her neck seems
to be loosening up and her head seems to stay more 'mid-lined'
more often without any fuss. Dad said he would start taking
her to PT on some days, that would help mom out a lot, since
it is a small drive from work to daycare to PT, then the trip
back to work. Claire drank most of her 8oz bottle at her appt
and another 7oz at daycare.
In the evening, she had a nice bath and drank her 4oz of shake
before bed. She was up to almost 28oz of shake for the day,
and couldn't stay awake to play with mom, so mom put her in
her bassinet around 9:30pm.
Claire was up at 6am, fussing for her bottle. Her nose had
been running and mom had lots of cleaning to do to get her
face cleared up. She had a nice day, hanging out and drinking
shakes. She was fussy on the way back home from her friends
home, and mom fed her a bottle for a few minutes and Claire
moved her head aside (as if to say, she was done) and put
her thumb in her mouth. Within seconds, she was asleep.
At home, she drank more and took a nap. Much of the day she
was in her swing watching mom try to clean her room. Since
Claire was in mom's room, Claire's room had become a bit of
a storage room, and mom wanted to clean it up in hopes of
getting Claire back in her own room eventually.
Claire missed her bath because she was so exhausted in the
evening, mom didn't have the heart to undress her for a bath.
Her nose was running and her head was congested all day, and
mom didn't want her to catch a chill either. She had a few
doses of decongestant and one dose of Dimetapp too. Claire
drank another 4oz before bed and all but passed out as mom
was feeding her. She just couldn't drink anymore so mom put
her to bed around 8:30pm. But had to wake her about an hour
later, as she didn't have her meds, and went to bed too early
to get them. She was a tired Baire.
Claire was up at 5:30am, hungry. She'd slept most of the night
and was ready to begin her day.
She hung out at her friends home by the pool as her sibs swam,
and eventually went inside and sat just inside the glass doors
in the air conditioning, so mom could watch her fall asleep,
and still watch the kids.
Mom and dad had a pina colada... or two... and a delicious
dinner later. It was a fun weekend, very relaxing with friends.
In the evening, Claire drank about 8oz (she ended up with
28oz for the day -- all shake) and when she finished the bottle,
she was so tired. Mom put her to bed around 9:30pm and Claire
was asleep within 10 minutes. Mom finished watching the USC
vs VT game, first college football game of the year (flipping
between that and preseason Bucs vs Dolphins -- a real family
Mom was in bed by 11:30pm.
Claire had a good night.
She went to daycare and afterwards mom packed everyone up
and they went to visit friends in Georgia for the weekend.
Claire had about 24oz of shake for the day, and a good BM
or two. She seems to be doing really well these days. In the
evening, she was in bed by 11pm, and mom was too, shortly
afterwards. Dad stayed up with his friend and watched movies.
Claire was asleep through the night and mom was up at 2am,
she decided to wake Claire. Claire had been stirring a bit
anyway, and rather than go to sleep only to wake up at 3am
to feed the Princess, mom opted to feed her while *mom* was
awake. Claire drank about 3-4oz of thick shake and went back
to sleep. She was up again at 4am, crying as loud as her little
lungs would allow. Mom held her, offered her a bottle, but
nothing... mom gave her some Mylcon for gas, and she soon
settled down and eventually drank about 1/2 oz and went back
Mom woke Claire up in the morning to get her started on her
bottle early so mom could get to work early. She had a 10am
meeting, but wanted some time at work to prepare for it.
Claire drank pedialyte and juice to loosen her up a bit, she
drank a lot of thick shakes yesterday and mom was concerned
that some of her fussing the night before was related to those.
She had 3 of her 5oz bottle and then off to daycare.
At 1pm, she had her 45 minutes of PT. Her therapist was really
ticking her off, trying to stretch her neck out, but noticed
a bit improvement on her flexibility.
Claire was up at 2am, just as her daddy was going to bed.
Mom fed her a couple oz and she went back to bed by 2:30am.
She had a busy day with her mom. They started off with Hospice
visiting at 9:30am and a 5oz bottle, and had to rush out the
door soon after for Claire's ABR (hearing test) at 11am where
Claire drank nearly 8oz. Claire had to stay awake all morning
and had a nice warm bath in preparation for sleeping during
the test. From there, they rushed to mom's dr appt, and then
out of there to get mom a little lunch on the way to the OT
The arrived home at 4:30pm, not enough time for Music Therapy,
too bad, but the therapist said she would try to go to Claire's
daycare tomorrow. Mom was very appreciative as she knows how
much Claire loves her music!
In the evening, Claire had her second bath for the day...
to clean up the 'glue' from the ABR test earlier. She drank
another 8oz bottle and went to sleep on the couch as her family
ate dinner (pizza night - but they all had calzones). By 7:30pm,
mom was exhausted and dad too over the mom duties so she could
lay down. She fell asleep and slept until 2am.
Claire was up around 1:30am until about 2:30am. but up just
once during the night, hungry.
Dad took her to her cardiology appointment and the dr told
him that they could discontinue Claire's heart meds. A banner
day for Claire!!
She had a busy day at daycare and at home a relaxing evening
The alarm went off at midnight to remind mom to give Claire
her meds, but mom wasn't too sure Claire needed more as she
was still sound asleep. Mom stayed awake weighing her options.
Mom couldn't sleep wondering if she had given her too much
meds or not enough after re-dosing Claire from her throwing
up earlier. She knew Claire hadn't eaten well in the evening
and knew that was the priority, as she thinks that "too
little" food accounts for possible seizures, so should
she see if Claire would wake up? Mom checked on Claire about
1:30am. Mom was a bit frantic about giving meds and not giving
meds, didn't know what to do, so decided that if Claire woke
up, she would give her a smaller dosage (and that should get
her back on schedule by the morning) and feed her, as she
hadn't eaten much the evening before. Claire's eye's popped
open and she was wide awake, just looking for a reason to
wake up. She had her meds, drank about 3-4oz, then back to
sleep by 2:30am. It was the only time she was up.
She woke up again at 7am and was hungry as anything! Dad fixed
her a bottle while mom got her meds ready -- as Claire was
crying. Probably good for her little lungs... but not a sound
mom is proud of.
Claire drank 5 of her 6oz before going to daycare and mom
off to work.
Claire had PT today and mom and the PT looked over some catalogs
to see if there was any seating they could get for Claire
that would keep her up straight so she could have a little
help sitting up. She is just too small, so they discussed
having someone come in and look at her and make something
customized for her.
Mom and dad slept in until about 9am.
They picked up Claire's brother, as he had to "serve"
mass and left Claire and her sister at her uncle's home. Mom
and dad were so proud of Claire's brother. It was only the
third time he'd served mass, and he was the only alter server.
After mass, they ran a couple errands and went to pick up
Claire and her sis.
In the evening, the day seemed to have gone by so very quickly,
but the Claire stories were flying! Evidently, her aunts had
her grinning bigger then they'd ever seen and she was making
funny faces at her uncle which had them all laughing. She
was the center of entertainment. She was up at 2:30am, drank
an oz or so, and then went back to sleep. Up again at 4:30am
for the rest of the day. The aunts decided to give her Mylacon
for gas, and it worked well to calm her, but she didn't go
back to sleep. Claire knew she would have only so much time
to enjoy her aunts, and she didn't want to sleep it all away,
they are WAY too much fun for that!
Claire had her morning meds a couple hours late, and her afternoon
meds late too. She threw up her afternoon seizure meds and
so mom thought she would just give her more, tho not as big
of a dose.
At home, mom made sure dinner was ready early, as everyone
had a big weekend and needed to be in bed early. The family
ate dinner by 6pm and kids were ready for bed by 6:30, so
they sat on Mom and Dad's bed watching tv when the electricity
went out due to a big storm outside.
Fortunately, dinner was done, teeth were brushed, so the family
just hung out on the bed, laughing and telling stories and
making up some too. Claire's sister, 5 years old, likes to
tell everyone about when she was bigger and had babies, Claire's
big brother enjoyed holding Claire and playing with her. After
a short while, the kids went to bed and then the lights came
on about 5 minutes later.
Claire finished a bottle of pedialyte and juice, but just
barely as she fell asleep and tho she was breathing well,
she was completely 'unwakable' in the evening, from 5pm to
9pm. Mom decided it was possible that she may not have thrown
up as much meds as she thought, and maybe got too much meds,
which would explain her being sleepy (or she was coming down
with something, or just plain totally exhausted). So mom opted
to delay the evening meds from 10pm to midnight.
slept really well! She was up once around 12:30am and drank
about an oz, then back to bed for the rest of the night. Mom
felt like she got a really good night of sleep. Perhaps it
is the new bottle of meds?
The morning was filled with packing up the kids to go to their
uncle's home to spend the weekend with his family and mom's
sisters (and grandma!). Mom packed the new bottle of meds
for the girls to use. No sense in taking any chances of Claire
being up all night.
Once packed, Mom and Dad dropped them off and enjoyed their
day. They did a bit of shopping and went out to dinner and
a movie in the evening. They saw 'Harry Potter and the Prisoner
of Azkaban'. It was amazing the number of young kids in the
theater. They didn't bother mom and dad, but mom had heard
the book on tape and knew there would be grim-reaper type
characters (not just one, but many) along with a werewolf
(who was very mean and ugly -- scary is an understatement).
And given the previous movies, it could be very frightening...
and it was. So many people think it is a children's movie,
mom doesn't agree. Certainly, mom would have given it at least
a PG-13 movie, NOT a PG... and she was certain those children
did not sleep a wink that night! It reinforced mom and dad's
notion that Claire's sibs wouldn't be seeing that movie any
time soon... just way too scary for them, and mom and dad
don't always get enough sleep as it is, no sense in staying
up with a scared child when it can be avoided!
After the movie, they went to listen to a band, then back
home for a good night of sleep!
Mom and Dad REALLY appreciate having family come to watch
the kids so they can relax and get some rest. It is the best
present anyone could have given them!! Thanks guys!!
was up at 12:30am -- mom thought hunger or teeth. She fed
Claire and opted for more Tylenol since it had been 3 hours.
Claire was still not happy, so mom cuddled her and tried more
tricks. Nothing helped. Claire drank about 4oz during the
night, drifting off only to wake up about 10-20 minutes later.
By 5am, mom asked dad to take over. Not that he had slept
much, with a baby crying and all, but he was due to get up
in another hour to get the kids ready for school, and with
mom getting next to zero sleep, she was thankful he would
Dad fed Claire another 4oz, and she stayed awake all morning.
She drank another oz before mom was up for work and taking
Claire in to daycare. Mom may have gotten 3 hours of sleep...
a power nap to some.
A very rough night all around. Mom is hoping it is all something
she will grow out of. She's thinking either Claire is biting
her hand with her new tooth and is annoyed with that, or she
is still congested and her hunger makes her cry, but the congestion
keeps her from eating. If mom is off base with this, then
it's anyone's guess. Mom also got her afternoon med ready
out of a new bottle... who knows, could be seizures again
After more thought, mom decided it could be time to use a
new bottle of meds for Claire' seizures. She filled the dosage
for daycare from the new bottle and she gave her evening meds
from the new bottle. Claire was in bed at her usual time,
right after meds around 10:30pm. Mom and Dad were exhausted.
In the evening, mom's family came over for 'happy hour' and
dinner. The margarita's were flying and It was big fun. Outside,
the rain was pouring down until everyone left. Mom's family
came into town for their 'Claire-Care weekend' where they
take the kids on Saturday night at Claire's uncle's home and
Mom and Dad have a nice quiet weekend together.
Dinner was fun, pizza of course, and everyone left by 10pm,
kids and Claire all in bed. Mom and Dad too.
Claire was up at 4am, hungry. Mom fed her 3oz and she was
back to bed by 4:30am. By 5am, she was up again, so mom fixed
another bottle, fed her another oz or two and put her back
to bed. At 6am, she likely never went to sleep and started
fussing. Dad got up with her and she finished the second bottle
mom had made of 4oz. and she went back to bed.
Mom woke her later for meds and a bottle, but didn't have
much time to feed her as they were running out the door late
to work. Mom handed the bottle to Claire's caregiver as Claire
was chompin on her hands, she was suddenly very hungry, and
had a big 9oz bottle of shake (bananas, strawberries and apples!).
Claire finished her 9oz bottle and then another 8oz by the
end of the day.
When she got home, she was hungry and drank another 4oz and
was tired, so mom put her in her boppy pillow and she took
a nice nap under the ceiling fan as her brother and sister
played outside and her daddy mowed the lawn. So far, she's
had 28 oz for the day.
In the evening, she added another 4oz, but up came about 2,
so she still did well for the day. Mom gave her tylenol before
bedtime, hoping to 'nip' the teething pain and Claire went
to bed around 10:30pm.
Claire was up at midnight, and again at 4am until 6am. She
was struggling with constipation, congestion and teeth. Dad
gave her a decongestant and a bottle at midnight, they used
the bottle to soothe her and it worked until she coughed,
then she cried again. She drank 5oz of formula/pedialyte.
She had a rough BM, and that helped some too. Around 5:30am,
mom gave her some Tylenol. She hadn't given her any in quite
a while and was hoping to avoid it, but the poor dear was
really unhappy. Within minutes, she settled down and went
back to sleep.
Claire and mom were off and running early in the morning to
Claire's hearing appt. Her hearing aid had come back fixed
and she was thrilled to go get it. Afterwards, mom had an
appt, then off to Claire's dr appt for a weigh in. Meanwhile,
she finished another 5oz of formula/pedialyte. Unfortunately,
the dr's office called to say the dr was running 45 min to
an hour behind, and they were wonderful enough to offer Claire
an appt in the afternoon. Mom took it as Claire's dr appt
was at 11:45 and her OT was at 1pm... and running an hour
late wouldn't allow time to make the OT appt, and everyone
knows what mom had to do to get that OT appt. With the cancellation
of that appt, mom had time to make a few calls to Hospice
to schedule Music Therapy and as the hospice nurse to meet
her at the dr appt in the afternoon, during what would usually
be the nurses home visit. She was excited to go meet Claire's
During OT, the therapist tried to measure Claire for splits
so she would keep her hands open. The OT wants Claire to wear
them at night, but mom is thinking no one will sleep if Claire
doesn't have a thumb to suck on, so she wasn't too sure about
that, but does want Claire's hands to open more than 130 degrees.
She had evaluated Claire about 8 months ago during the Children's
home society's clinic, and noticed BIG improvements on Claire
opening her hands and her new bottle (not only using haberman
anymore) and was very pleased. Claire finished off a 6oz bottle
of shake during the appointment.
After OT, which ran long, mom had Claire home for MT, which
also ran over a little. Claire started another 6oz bottle
of shake, and then off to the dr's office.
Claire's dr was in rare form. An entertaining guy anyway,
but a real joy today! Claire's nurse met us at his office
and mentioned to him that Hospice was talking about graduating
Claire and wanted his recommendation. Among other things,
he had a concern about Claire's next 'episode' and knew it
could happen at a time when she would need hospice sooner
than they could help, if she was not a patient. He said that
Claire has ups and downs, but not actually plateau-ed, like
you would expect before graduating her from hospice. He said
they were good for the family and offered guidance that the
family relied on heavily. He said everyone needed to sit down
and weigh the pros and cons and see that hospice was needed
still for Claire and her family and his recommendation was
that Claire stay with them. Claire weighed in at 11lbs 8.5oz
and 25 1/2" long. That puts her up 7 1/2 lbs in 3 weeks.
It is a slow process but as long as she is gaining, the dr
It was a busy day, but all in all a good one. In the evening,
Claire finished her bottle and dad had a friend in town who
came over for pizza night and even mom had a beer with her
Claire drank most of a 5oz bottle of ped/formula and she threw
up once (from the meds) in the evening after her meds, so
mom gave them to her again adding Tylenol to the list, and
then she was off to bed around 10:30pm.
Claire was up just after midnight. Mom didn't think hunger
alone would wake her so early in the night, but fed her anyway,
about 3oz of shake and put her back to bed. She was up again
at 4am, working on a BM. Eventually, she was able to pass
most of it, down another 3oz, then some Pedialyte w/juice
and go to bed, mom fed her pedialyte w/juice hoping it would
help her BM by morning. She also gave Claire another suppository.
Claire was up again and this time Dad took over and fed her,
and watched her so mom could get a little rest. He got the
kids off to school and came back and got Claire ready and
took her. Meanwhile mom was able to get another hour or so
of sleep in.
Claire had a great day at daycare, drinking well and even
more at home. She had nearly 30oz today and went to bed around
Claire had a nice day. She was up early drinking, but not
too well, so mom showed her patience and persistence until
Claire drank most of her 6oz shake. Then off to daycare.
Her brother and sister had their first full school-day of
the year, and mom took pix quickly in the front yard as school
started earlier this year and dad was running late.
Claire had 15oz there and finished off the last of her two
bottles once she was home. In the evening, her cousin came
to visit. Claire had a nice bath and drank another 8+oz during
the evening and mom gave her some mylacon for gas as she had
random cries. She fell asleep around 8pm, but mom had to wait
until her meds were given to put Claire down for the night,
so she was in her bed by 10pm. Claire finished just under
30oz for the day.
Claire was making noises during the morning hours. She was
sucking on her tonge. Dad thinks she likes the way it sounds
as she was doing it a little during the day too.
She was up late for meds, as everyone was up late last night.
Church first thing, and Claire was very good in church, drinking
a little and staring at her daddy a little when he was holding
Afterwards, the family went to a friends home, it was beautiful
and she was still unpacking boxes, but they wanted to see
the new place and were very happy for her.
Once home, dad took over Claire duty as mom took a nap. It
was around 3pm, and she woke up around 6pm. Mom was a bit
exhausted. Dad fixed dinner shortly afterwards, it was a steak
night -- yum! And they got the kids off to bed quickly as
it was getting too late. Claire sister slept until closer
to 7pm, she was a tired girl too, and so pleasant to deal
with in the evening when she's had a nap.
Claire didn't drink really well today, about 15 oz total,
she slept a lot tho. The last three oz were pedialyte. Mom
has been trying to cut down on the decongestant, but it looks
like there's no way around it. She seems like she isn't hungry
at all, but mom knows she needs to eat, and she really is
hungry because once her head is cleared, she can really drink...
it will be best to keep giving her the decon to be sure she
gets enough to eat. Today was proof of that. Mom will add
it to her morning and evening routine. If she is congested
at night, she will wake up crying an not able to eat anyway,
so clear Claire head means sleep all around.
She went to bed around 10pm. Could stay awake for one more
drop of food.
Mom was up a little longer, updating the journal and catching
some Olympics from Greece. She thinks the hype is much better
this year and loves cheering on the home team -- go USA!
Claire was relieved today when mom told her that her family
in central Florida weathered the hurricane well. The family
will certainly keep the west coast folks in their prayers.
Today was cleaning day, as friends were coming over for dinner.
Everytime someone would call, they were invited. Mom got some
margarita mix and rum runner mix, but didn't use much as everyone
was busy filling up on hamburgers and hotdogs. The food was
good and the children were plentiful, along with a few meltdowns
as expected. Claire's sister had a rotten day, as she was
quite the pickle. Her last time out was similar to her first...
one of her parents saying, 'She's in timeout forever, you
can let her out, but I'm not!'.
Claire's sister is a good kid, sometimes she just lets her
temper or her fun get the best of her and forgets rules. Timeouts
are often more for the parents anyway, aren't they?
Friends didn't leave until after midnight and Claire's brother
had been in bed a while by then. Claire went to bed shortly
afterwards, but not after eating more.
Claire was up around 1:30am, fortunately for mom, dad was
up too. He thought she was congested and mom gave her some
saline drops in her nose and dad sucked it out with the aspiriator,
then mom gave her some decongestant, made her a bottle and
went to bed. By the time she gave the bottle to dad, Claire
was almost asleep. Dad couldn't get her to eat and in about
15 minutes he put her back in her bassinet and went to bed
Mom woke Claire in the morning. Gave her meds, diaper change,
clothes change (as she is still sweating at night) and started
her on her breakfast. The kids had orientation day today,
her brother would have to stay all day, and her big sister
only half day.
Dad took Claire in to daycare once she was all ready and mom
had bottles and meds ready to go. Mom took kids to school
and dad met them there. It was the usual craziness, but it
was all so fun, seeing kids after summer, all tanner and blonder...
and taller. Claire's sibs were excited about all the electricity
in the air!
After sister's orientation for Kindergarten, she was back
to her summer camp, last day... and mom back to work.
By 1pm, Claire was drinking well and resting too. Mom is so
comfortable with her caregiver. Thank goodness. And no hurricanes
blowing by the family's way today, they are truly blessed!
Claire drank nearly 26oz today, a banner day. Mom phoned her
sister and parents throughout the night to check and see that
they were doing well. Each sustained little or no damage from
the reports they gave mom. She does wonder if they don't sugar
coat things to keep her happy tho.
Claire slept fairly well throughout the night. She was up
with a single cry once or twice, but didn't sound like she
was hungry or in any need of anything, maybe a bad dream,
like her shake was too cold. Mom let her sleep.
Luckily, it is a fairly uneventful day here. Even with a Tropical
Storm coming right through town, it appears that everyone
is business as usual. At 12:30pm, there is a light drizzle
of rain outside, the storm is still about an hour away, er,
the eye is anyway, and so not much damage is expected (yeah!).
Claire's sister had three shots this morning so she can start
Kindergarten (tomorrow) and Claire's brother wanted to tag
along, perhaps to be happy it wasn't him, and to see if she
got a treat afterwards for being brave, he wanted in on that
action. Rumor has it they went to McDonalds on the way back
Mom received a call this morning from the OT office. Evidently,
there is no earlier appt except for the 30th, two days before
the current appt. Mom would have to change OTs to get that
appt, so she opted to just keep what she has. It seems agreement
on everyone's part that mom has spoken with that there is
a limit on OTs and PTs in Claire's town who deal with the
Children's home society. It might be nice if they could contract
with the hospital, but that is just a dream for Claire. When
the insurance referal runs out, the Little Peanut will be
really desperate then.
Claire was woken up by a mom packing meds and bottle. She
drank really well this morning, about 6oz before mom had to
give in and get her in a bath before daycare. Claire enjoyed
her bath and mom fed her a little more before heading out
Dad got a call from OT office saying they can get Claire an
appt on August 18th! Mom is so pleased!
Claire drank another 10oz at daycare, then once home, she
drank about 10 oz in the evening. She ended up close to 30
oz for the day!! Let's hope this continues!
17 Months Old!
was up around midnight. Crying. Mom wasn't too sure what to
think of it. She was pretty loud and dad woke up questioning
if it was her teeth bothering her. Mom didn't think so as
she didn't have her hands in her mouth and wasn't drooling.
Mom thought it was a mix of congestion and constipation. She
changed her diaper and sure enough, Claire was stopped up.
Eventually, she passed her stool, meanwhile mom was trying
to feed her, and she drank a couple oz, but not too much.
Soon after she calmed down and the little thumb when into
the little mouth and all was right with the world once again.
She didn't go to sleep, but seemed content, so mom put her
in her bassinet and went back to bed, but didn't sleep. She
checked on Claire about 10 minutes later and she'd finally
started to close her eyes, around 1am.
Mom woke her in the morning for breakfast. She will have a
busy day today.
Claire drank 6oz of shake and had a nice bath. Mom is still
upset over the OT appt cancellation and if Claire can't see
an OT until Sept 1, that would be a big loss on her part.
Mom was on the phone this morning trying to contact the Family
Service Coordinator who helps family coordinate services (duh)
like therapies, etc. She had not luck reaching her. sad. So
she will continue to make calls and see who else can help
her get therapies for Claire. Her last PT appt was May 26th,
2 1/2 months ago, but I cannot recall how long it has been
since an OT appt (likely March), and Claire really needs them.
coordinator returned mom's call and said essentially that
Claire is out of luck. Once the insurance referral runs out,
Claire may not get further therapies because the children's
home society is unable to track down further therapists for
her. sad. Mom asked if there was any reason she should not
be upset (as she was very upset) and the coordinator said,
'no, and I'd be very upset too'. sad. Mom felt it wasn't a
very productive day.
Claire's hospice nurse and hospice family service coordinator
came by to visit her today. They were so sweet, going over
the checklist with mom to see if she had enough O2 tanks for
Claire in case the electricity went out (and the concentrator
wouldn't work), checking she had enough meds and had the emergency
hospice cell numbers.
mentioned to them that if Claire was out of electricity for
more than a day, the family would plan to leave town, and
go where there was electricity. They agreed that is what they
would probably do too (but in all honesty, mom is sure they
would feel more needed here).
Music Therapy also came by, then mom was off to take Claire
to her physical therapy appt. The appointment was quite productive
and the therapist was ready to give Claire lots of goals.
She will need to work on keeping her head straight and not
bending it back. Also her back has a curvature to it, so she
will consider seating for Claire to help her. Also possibly
a stander, to help strenghten her legs so one day they can
be strong enough to support her weight. They spoke at length
about all the things that mom wanted for Claire, like grabbing
a toy or a cheerio. The therapist gave Claire a rattle and
she actually held it, slid it across the floor and even pulled
it to her mouth. Mom was quite proud and really can see the
potential for Claire to learn. She's hoping the therapist
sees the same potential.
Mom was able to reach the OT today. The office told mom the
first time she called that the therapist was over at the hospital.
The second time mom called they said she was in with a patient.
Mom left a message the second time on her voice mail. The
therapist called mom and said she was in another town almost
2 hours away with her mom who was in the hospital. She was
kind enough to return mom's call, but mom felt bad bothering
along with brother and sister, went for a hair cut. The Claire
Haire was getting a little unrul-ee these days. Not to mention
her brother hadn't had his cut all summer, he was getting
big hair, but he loved his big hair. Mom hadn't seen such
a pouty face on him as what she saw when he was gettin it
all cut off. He looks like a nice little boy now... perhaps
not the look HE was going for.
Claire drank 4oz of pedialyte (mom is hoping to avoid the
BM cries tonight) and then 11oz of shake. Claire will work
on one more bottle tonight and off to sleepyland. That will
put her well over 21 oz, maybe even meeting her goal for the
day. Let's pray for a restful night, as tomorrow Hurricane
Bonnie blows into town. At least the second hurricane scheduled
for us, Charley, won't be coming to see Claire... fingers
crossed, no one can predict these darn things.
THE WAY, YOU CAN CLICK ON MOST PICTURES FOR A LARGER IMAGE.
SOME PEOPLE DON'T KNOW, OTHERS FORGET.