Journal -- 26th Month
slept through the night like a little dream... probaby because
she was able to get her sock off her right hand (her favorite).
Her hands are looking really good, not too much damage lately
from all the thumbsucking and hand gnawing.
Dad is staying home with her today as her caregiver wanted
the day off.
Dad did really well with Claire today and by the end of the
day, mom came home and Claire wanted to keep eating and eating.
She had nearly 32oz today mostly shake, but 4 1/2 oz of that
was pedialyte. She's such a good baby... er... toddler.
slept through the night. She had a good day today, and ready
to go go go. She was up and kicking mom with her feet, mom
will remember next time to put her shoes on last in the morning.
Claire was off to daycare, and her PT appt late in the day.
She had a good workout and was exhausted when she got home.
The family went to dinner in the evening, as they are still
unpacking and getting back into routine from the weekend -
Claire slept all through dinner... everyone is going to bed
early tonight too, even little Baire.
Claire was fussing in the evening before bedtime, but overall
she was able to quickly settle down and go to sleep.
slept through the night ... she was pretty exhausted from
her day before at Disney's Magic Kingdom and EPCOT. Mom let
her sleep in as long as possible while they packed and prepared
for the day at Animal Kingdom, also at Disney.
The family loaded up the truckster and headed over to AK and
arrived at 10:30am. The park stayed open until 5pm, so by
4:30 they left and headed back on their long journey home...
stopping for a Mother's Day feast at Wendy's.
They got home close to 8:30pm, and the kids bathed and went
slept through the night like a little dream.
The family was up at the crack of dawn, maybe a little sooner.
There was just way too much fun to be had, so mom was up before
anyone (more excited than the kids perhaps) showering and
then getting Claire ready for the long day ahead. Claire's
big sis lost another tooth, and put it with the other one
she lost a week ago, but still sharing with her 'public' as
she feels everyone needs to see the tooth. Packing bags, setting
up stroller/wheelchair for Claire and heading off to the park.
It was faster to walk than to get to the monorail, so everyone
strolled over, just about halfway realizing that mom forgot
Claire's bottle (tho she had the refills) and later remembering
she left the sling also in the hotel. After entering the gate,
dad went back for the items, and the family took the train
to the back of the park where they would begin their day and
work their way to the front.
There were Princesses to pose with and Mickey was waiting
anxiously to meet the kids. Later, dad and Claire's brother
went off to see Adventureland and Frontierland, while the
others did their thing, including grandma and grandpa taking
Claire's sis to 'small world'. Grandpa was a real sport.
Later it was off to the Princess Luncheon in Epcot at Norway.
The food wasn't what anyone was expecting, and extremely small
portions (and expensive) but the princesses were gorgeous.
Grandpa was especially impressed with Princess Jasmine, guess
we will need to get the movie for him!
After Norway, the family go to see Crush in 'Turtle Talk'...
a highlight for mom as the technology and entertainment was
like no-other she'd seen there. Claire's sister was asked
how old she was and at 5yo, Crush said she was 'just hatched',
but he was quickly corrected that she, 'wasn't hatched, I
came out of my mommy's tummy'... he wasn't too sure what to
say to that... except lead into how turtles lay eggs in the
sand, and warm sand produces girl turtles and cool sand produces
boy turtles... thus 'cool chicks and hot dudes'... well, you
had to be there.
From EPCOT it was back to the Magic Kingdom and more rides
and dinner and total exhaustion hit mom so it was back to
the hotel around 9:30pm... leaving dad with Claire's sibs
to hit a few more rides in Adventureland before returning
at 10pm. Everyone crashed and burned that night, esp Claire's
sister who didn't notice the tooth fairy had come. She got
two golden dollars, one for each tooth.
slept through the night.
Mom was up getting ready for the kids' field day, and then
some shopping and then some packing for Disney this weekend.
Plans are to get out of town by 3pm, but they made it more
like 4:30pm. Still not too bad.
Once on the road, everyone was a bit more relaxed as leaving
town always seems to get a bit stressful. Dad had some things
he needed to get done with work, and mom knew she would forget
something... and sure enough, she forgot her little cans (8oz
sizes) for Claire's WDW tour. She also forgot the shade for
the stroller. Mom will wing it tho, starting with buying Claire
a big floppy hat once they get into the gate.
The family arrived at WDW around 8 or 8:30pm and were greeted
by grandma and grandpa and their aunt. It was a nice greeting
and everyone relaxed, got a bite to eat and got to bed late
in excitement of the big day tomorrow!
slept through the night like a little dream. Mom realized
why she probably fell asleep; her sock came off her hand and
it was in her mouth. When mom woke her, she had a nasty rash
around her mouth. Likely from drooling. Mom washed her face
(patting it gently) and got her ready for school... then mom
was off to work.
was up with Claire until who knows when. Dad was tired in
the morning, and so was Claire. Mom let her sleep in a bit,
but not dad.
Mom took Claire to daycare in the morning while she went to
a meeting. When she picked up Claire, she'd gotten a call
from hospice nurse helping her decide what to do when she
feels Claire has a bad bottle of meds from the pharm... what
is the protocol here. Maybe look for a new pharm, someone
who's been in the business for a long time... someone who
knows the med Claire gets, the correct color, etc. When mom
got off the phone, she discussed it with Claire's caregiver,
and she knew just what mom was talking about as mom measures
the dosage for Claire's afternoon meds and sends the dosage
for her caregiver to give her each day. Claire's caregiver
knows how the meds separates and understands the different
consistencies that mom talks about... she knew just what mom
was saying and gave mom some credibility. She has also seen
Claire have seizures, and knows how scary it is and understands
how mom will do everything in her power to keep Claire seizure
free... even if the pharmacist looks at her like she's lost
her mind... and they've done that a few times.
Claire had a wonderfully uneventful day. She went to PT, where
she sat very nicely for seconds at a time. She wants so badly
to be a 'big grrl' so she is working very hard to do things
that the big kids do.
In OT she had a good time, full of smiles for her therapist
and working hard.
In the evening, she had a nice big nap so mom got a lot of
work done. Claire's music therapist called to say she wouldn't
be coming by. Evidently, she handed in her 2 weeks notice
and was very sad, and very busy. But she did say she would
come by next week.
Dad brought home pizza for pizza night (every Wednesday) and
that made clean up a breeze. Mom was working feverishly to
get some information to print from the Internet as Claire's
brother had a report due tomorrow... out of the blue, the
printer started to kick in and print out what mom was asking
for. Claire's brother asked what the problem was, and mom
just said the printer knew that dad was coming home, and it
was in big trouble. They got a good laugh from that one.
Too much craziness going on tonight for Claire's bath, so
new diaper and full tummy and off to bed.
After she was in bed about 30 minutes (about the time mom
layed down for sleep) Claire started crying. Mom picked her
up, offered her food, put her down again - this time on one
of mom's shirts (she seems to be content laying with mom,
and not laying in her bed). Not too sure what was bugging
her, but she eventually fell asleep.
was up a good part of the night with dad.
Mom woke her for school and she had a pretty good day. Mom
asked the dr to call in a new prescription for Claire since
her dosage had increased for her meds... at a new pharmacy.
Mom picked up the prescription later in the day and once she
was home she looked at it and knew it wasn't right... so back
to the pharm. This stuff is like oil and vinegar, within an
hour you can see milky sediment on the bottom of the bottle...
mom had let it sit for an hour at home and there was no sediment
on the bottom.
She told the pharm that she felt the pharm bottle hadn't been
shaken before dispensing Claire's prescription. *The pharm
said that not all meds that have 'shake well' on them have
to be shaken really well... mom wondered about that one.
Mom asked her to pour out a sample from the med given to mom
and a sample of the med they had on the shelf. She did (after
weakly shaking the bottle), they both looked the same... mom
insisted neither of them looked the way they should. Mom shook
the bottle from the shelf (even shook it upside down so the
sediment could mix properly) and finally the color was correct.
(thick milky sediment on the bottom mixes with the clearer
stuff that rises to the top to make it more milky than watery
in color... the color is obvious when it is shake). This pharm
was not familiar with this med at all. She didn't know what
the correct color or consistency needed to be... and she didn't
believe that mom knew either.
*The pharm said that there was just more bubbles in the one
mom thought was correct, and that there wasn't enough air
space in the bottle mom purchased to create those same bubbles.
(picture: mom banging head against the counter) Mom insisted
that was not the case - she knew there was NO sediment in
the bottle they sold her since the big bottle wasn't shaken
before it was dispensed. *The pharm suggested that they redose
the meds, (picture: mom thinking 'been here, heard that')
and mom said, 'not out of THAT bottle, it would be too strong'...
afterall, they just took much of the inert stuff from the
top of the bottle. The pharm insisted that the strength would
be fine. (picture: pharm not understanding why mom was banging
head against the wall)
Mom knew it took way too long to get Claire's levels back
to what they needed to be once they were too low (low concentration
of meds when not shaken causing seizures - taking days to
stop them) or too high (from a bottle with too much concentration
after meds dispensed out of bottle with out shaking causing
sedation) to mess with a bottle that in any way wasn't perfect.
The pharm was incredibly patient with mom. Mom was acting
frantic and all-knowing, insisting the pharm didn't know what
was going on, as mom had dispensed this med for nearly 2 years
(for Claire) and insisted she knew when the concentration
was right, and when the bottle was shaken and when it wasn't.
She also insisted that when you are dealing with a small 14lb
child, and you are talking anti-seizure meds, it needs to
be right... it isn't like vitamins that don't need shaking,
or pills that can be simply counted out. She had just been
through a bout with the seizures and felt the dosage was finally
right, she doesn't want to be second-guessing the medicine,
which should be the constant factor in this equation.
Again, the pharm dealt with mom very professionally, and said
they would order a new bottle, and that they wouldn't dispense
it until mom was there to pick it up... mom was tickled!!
Like they actually put thought into their answer and was dealing
with mom's concerns (which were very real to mom). Mom teased
that she wanted to be the one to shake the bottle too... they
chuckled and mom was turning to leave when the *pharm told
her to just keep the med, the original dose, in case Claire
needed it. Mom looked at her funny... after all that, mom
said, 'I won't give that to her, you keep it'. Mom felt she
would surely have seizures with that bottle... afterall, that
is why she was there to begin with... she realized that the
pharm just didn't get it afterall.
She is still worried that they just think mom is crazy and
will continue to use the bottle with the higher strength (after
they dispensed a bottle full of inert stuff to Claire). Mom
will call in two days and hover over the pharm while they
dispense the next month's liquid. She will do this every month,
not knowing if the pharm dispensing in between is shaking
the bottles. sad. Mom may never know if it is right, but she's
familiar enough to know at least when it is close.
Man, if you read all that, you probably need to get a life...
as does mom!
slept through the night and mom woke her up for breakfast.
She looked great and mom got a few smiles between med, diaper
change, face washing and putting on her play clothes. Mom
took her to daycare after Claire drank the better part of
an 8oz bottle, a shake with vitamins/flouride and added olive
oil for omega 9, constipation relief and added fat.
Claire is really feeling solid and her legs are filling out
nicely. Mom spent time with her over the weekend working her
leg excercises and she is really getting them stronger...
mom senses that she really wants to stand up, and hopefully
will be doing that soon!
had a good night and was up fussing around 3am. Mom was up
with her, wondering what in the world was wrong... Claire
seemed very sad, didn't want to drink her bottle, so she cuddled
with mom for a little while and then went to sleep. Mom had
taken off her socks (from her hands) and so mom is thinking
her hands were hurting, maybe she bit down on a sore spot...
tho her head was still facing the 'better' hand, so not too
sure if that was it... or gas.
In the morning, Claire slept in. She later woke up for breakfast
and mom spoon fed her a bunch of cereal (rice cereal with
bananas already added). She must have had 5+oz of that, and
mom gave her some water to wash it down in between. Claire's
had water before to wash down her tylenol and other sticky,
gunky, stuck-in-your-throat meds, but this time mom gave it
to her in between gulps of cereal to help wash it down. She
probably averages about 1/2 oz of water per spoon feeding
She was still hungry after all that, so mom fixed her another
shake and fed that to her, she worked on that bottle during
church too. As mom was going up to receive communion, Claire
jumped and let out a cry... then about 10 seconds later, another
cry. The 10 seconds was filled with her catching her breath
to let out an even bigger cry... probably looked more like
a yawn, but mom knew what was coming next would be very loud...
she finished receiving communion and headed straight out the
door with her screaming child... who said T18 babies aren't
Mom figured Claire bit down on her hand again, where it was
sore... mom will need to come up with something... the socks
alone aren't helping her with her need to bite down on something,
and her hands are her best friend.
Mom took a sock, cut a hole in it and stuck a pacifier in
the side where Claire would typically find her thumb. Mom
stretched Claire's hand around the pacifier (inside the sock)
and hoped that, at the very least, the paci would come between
Claire's teeth and her fingers. It seemed to work, tho Claire
is still fighting putting anything that resembles a pacifier
in her mouth. Mom did notice she was biting down on the plastic
part of the paci through the sock... which is better than
biting her fingers. The sock seems to remain relatively dry,
unlike when mom put the sock on Claire's hand without the
paci. Guess we will have to see how this works out. If her
little hand (and really it is just the right hand between
index finger and thumb) could just dry up a little they could
heal faster. The wetness of Claire's thumbsucking doesn't
give the thumb a chance to heal. She has calluses on her finger
tips, but they seem to be healing nicely.
After mass, Claire fell asleep on the way home, and slept
in her carseat for about an hour, when she woke up, she was
... you guessed it... ready to eat again.
In the evening, dad took the kids for a walk around the neighborhood,
and mom and Claire hung out watching Food TV (mom's favorite)...
and then pondering what to fix for dinner, making bottles
for Claire's day tomorrow, cleaning the kitchen and talking
to friends far away (Claire video conferenced with Ryan's
mom, who will get her webcam soon) and with family far away
Claire fell asleep around 10pm, and mom put her down after
getting into a show on tv that didn't end until 11pm... mom's
fault for being tired this morning.
had a good day of lounging with mom. She had a spoon feeding
in the evening, but not too messy that warranted a bath.
As she napped, mom and big sis made some cookies while big
brother and dad worked in the basement... trying to clean
it all up -- the equivalent of cleaning out a garage.
Mom made some chicken noodle soup from the leftovers of a
delicious roasted chicken the neighbors gave them a couple
days ago... and they had that for dinner while dad ate salad.
Mom decided the key to homemade chicken soup is LOTS of salt.
Dad's doing really well on his diet. The family had a nice
evening and Claire went to sleep like a little angel. Mom
took off Claire's socks tonight (from her hands) hoping they
would dry out some, she layed Claire down, with her head facing
her left hand, making her have to lift her head and move it
to the right to get the elusive thumb which was trying to
dry out and heal.
was up around 5am fussing, but got back to sleep on her own.
Mom woke the peanut up and fed her (by spoon) knowing she'd
be hungry once she finally woke. She was very tired. She had
about 4oz of cereal and mom washed it down frequently with
pedialyte. Afterwards, mom put her in her chair and Claire
was fussy, so she turned on the tv for Claire... still fussy,
then she turned up the volume... fussy off and on... then
she put Claire on the bed (mom needed to get in the shower
and get ready for work)... Claire's fuss turned to talk and
smiles, so mom took her shower and when she got out, Claire
was sleeping. Mom finished getting dressed, got Claire's bath
ready and woke her up... again... it took her a while to wake
up as she was so very tired. Mom bathed her and gave her more
pedialyte and then off to daycare.
Claire didn't seem to have any seizures during the night and
her temp has been really good, even a little on the cool side.
She has a dr appt today at 11:30am and hospice nurse is coming
The drs appt went well. The dr scolded mom for increasing
Claire's dosage and not getting a level asap... mom mentioned
it was the weekend, but knew that protocol needed to be followed.
Claire weighed in at 14lbs 3oz... a new Claire Baire sit in
a Chaire with big Haire record! (okay, we are a little giddy
Next visit in 2 months, unless otherwise warranted.
The family is getting excited about the upcoming trip to Disney...
they haven't been in 2 years and the kids can't see straight!
Grandma and Grandpa will be joining them, as they only live
about an hour away, and Claire's aunt will come to, she is
only minutes away from WDW. Should be a big time, and Claire
has her new big Chaire... so mom is excited about that!
had a good day eating constantly... and that is a very good
thing. Before mom left for work, Claire drank most of her
She got a call in the morning from the hospice nurse with
her tegretol levels -- her tegretol level is 4.9 and lab quoted
a normal level would be 8.0-12.0.. so it appears her med needs
to be increased. The hospice nurse said she would call Claire's
dr to see what he wanted to do, and call Claire's insurance
to check up on the genticist and the orthopedic surgeon referrals
that were suppose to be underway... a nutritionist wouldn't
hurt either, maybe mom can throw that one in there too.
Dad was home with Claire and noticed some seizures, but not
as frequent as they had been. Dad fed her almost another 8oz
of shake by the time mom got home.
Claire was so fussy for food in the evening mom fixed her
some cereal hoping that would fill her tummy and she got out
the old spoon to feed her. Claire seemed to digress a bit
in her eating with a spoon, so mom worked on it more and vowed
to feed her more often with a spoon... the food would go in,
then the tongue would push it back out and the lips would
purse together as if to say 'that stuff ain't comin' back
in here'... so mom would do her best to get the food back
in and eventually much of it was gone... aside from what was
on Claire's face, hands and chair, mom could only assume that
most of it was actually swallowed... and not by mom! (tho
Claire did like to blow bubbles with it at one point and mom
got a face full too).
She finally seemed full and later in the evening mom fed her
4oz of shake, and she threw up some of it... she seemed still
hungry, so while video conferencing with grandma and grandpa,
she drank another 2 oz and was ready for bed... around 10pm.
had more seizures today, but late in the day.
First thing in the morning, Claire's hospice nurse came by
to see her, she noted the seizures (3 while she was visiting)
as she held Claire... Claire stiffened up and twitched, especially
her bottom lip and her eye.
Since she is still having them, it looks like they will need
to take her in for blood work, and hopefully this time she
will have a less painful time with it... probably tomorrow.
Hospice will see if they can draw the blood for Claire.
She didn't eat too well today. Mom went in to work and dad
watched Claire during the afternoon.
had more seizures today, but they seemed mild. The drs office
called to see if the bloodwork was processed and mom told
the nurse that they couldnt' get any blood, so there wouldn't
be any 'results'.
slept through the night. But mom had trouble sleeping. A ton
of things going back and forth in her mind, plus wondering
if Claire was having seizures, tho mom was certain she would
cry after each one has she had done during the day... cry
or cough and throw up... so Claire's silence was a good thing..
then mom had to check to see if her her little lungs were
filling with air... chest going up and down... okay, good
Mom figured Claire should probably stay home today... but
it was a done deal when she started having mild seizures again
(mom was thinking low blood sugar was adding to that). Then,
around 9am, Claire was warm and you guessed it, a fever. It
was 102.3... what is with kids these days... is it a new trend
to get fevers in the morning instead of the usual evenings?
Mom left a message with the hospice nurse, who she knows is
busy, and said pretty much if she didn't hear form her in
the next hour or so, she was calling the pediatrician... mom
eventually reached the nurse and they talked... both decided
the same thing, call the ped and he will likely order bloodwork
to check the anti-seizure med levels in her bloodstream(seizures)
and to see if she is fighting something (fever). Mom called
the ped, and eventually got a call back from the nurse, then
she had to talk to the dr, so later got another call back
asking mom to go get bloodwork. By that time, dad decided
he would take Claire for the bloodwork and mom headed off
Dad said they couldn't get enough blood out of the little
peanut, perhaps she needs more clear liquids, so dad is going
to relay the info to the ped and get some pedialyte in Claire,
and if ped agrees, try again tomorrow. Poor dear... she doesn't
deserve the needles, maybe they can just treat her without
anymore of that... afterall, Claire is all about comfort these
days, and bloodwork does not fall under that category.
slept through the night.
She was up in the morning fussing, and around 9am mom noticed
she had a seizure, not too long after that another one, tho
mild, and then followed by a fever... about 101. Claire pretty
much would eat really well, have her seizure, then throw up
everything she ate (and more if possible) then go back to
eating again, because she was hungry... then seizure... and
this cycle for a few times... mom decided to give her more
med (as she likely threw them up) and not feed her for a little
while... at least until her seizures were farther apart or
non-existent. Claire was very wimpy all day and mom was beside
herself... she sent dad and the sibs to church.
She tried to get as much food in Claire as possible and by
the end of the day, Claire drank nearly 18oz, which is very
good for her! Claire had mylacon and tylenol for her teeth
before bedtiime, but didn't have another fever all day. Mom
got the kids to bed early and hung out with Claire until she
fell asleep in her arms, then put her to bed. She fussed a
few times during the night, but never more than 20 seconds
at a time.
had a good day playing couch potato. She didn't drink very
much today, seemed lethargic and not really her bubbly self.
Mom spent part of the day planting seeds and baking cookies
with Claire's sister, who seems to need more attention these
days... and dad watched Claire. No fevers today, Claire seems
on the mend, must have been teeth.
slept through the night. Mom woke her in the morning and got
her all ready for daycare and mom dressed for work.
Mom was holding Claire and feeding her when she noticed she
was a bit warm. She took her temp and Claire was 101.3 (under
her arm). Mom knew Claire would be home today, so she had
a few calls to make. One to hospice to see if the nurse wanted
to come by to see her, and then decide if she needed to go
to the dr this afternoon. Another call to Claire's dad to
let him know and he said, 'of course, it's Friday'... seems
like kids get sick on Fridays so it is a rush decision to
see the dr and try to get in before the weekend.
Mom thinks it could be her teeth, but wouldn't rule out the
cold, or something more serious lung related. Will keep posted.
Claire drank well and finally went down for a nap around 10:30am.
Mom is waiting for the nurse to visit.
Claire's nurse came by and listened to her chest. Said she
was 'wheezing' but still sounded relatively clear and for
mom to just keep doing what she was doing with the shakes,
random clear liquids, decongestant and nebulizer at night.
She would call us on Monday to check on Claire.
slept through the night.
Her nose has been a little 'clogged' up still, but she woke
up all smiles this morning, so she is feeling very good these
days. She drank under 2oz of shake this morning and off to
Claire had a pretty good evening... a little fussy, but ate
pretty well and went to bed around 9:30pm.
slept through the night.
She had a fun day, starting with PT, then OT. She worked on
sitting, and propping her head up while on her tummy. It was
hard work, and mom has the pix to prove it. They must think
mom is some kind of nut going in with a camera for Claire's
PT. Like mom cares what people think.
In OT, she got a cookie and worked on eating it... her first
really hard thing that actually tasted good! She gnawed away
on it for a little while being careful not to break off any
large pieces that could cause problems in her throat. Mom
isn't too sure Claire is really ready for all that yet.
She fell asleep shortly after her hospice visit. Slept for
much of the afternoon giving mom time to get caught up on
emails and work.
dad came home with Claire's sibs and pizza, afterall, Wednesdays
are pizza night.
Claire was up and a bit grouchy... she ate pretty well and
mom gave her meds and mylacon to nip any potential gas problems.
Claire fell asleep mid-bottle, so mom put her down, only to
her Claire cry, pick her up, Claire quieted down and looked
at mom as if to ask, 'what is the matter, why did you pick
me up, I wasn't crying, oh no, not me'... so mom held her
for a moment and no crying... mom put her back down and in
1 minute, Claire started crying... mom was a bit confused...
picked Claire up and got the same look, as if she wasn't crying...
and all was right in the world as long as mom was holding
her. Dad thinks she's a little spoiled... so mom gave her
a bit of Tylenol after the third try and she still fussed,
but eventually settled down on her own and fell asleep. Whew...
slept through the night.
She woke up with her 'green gunk' nose as she is still fighting
that darn cold. She drank almost 4oz this morning and was
full of smiles for mom... a full tummy tends to do that to
She went to daycare and later to PT. Dad took her so mom is
waiting for the full report.
and dad got home around midnight and Claire and her uncle
were snoozin on the couch. Mom sent him to bed and put Claire
in her bassinet (which she is starting to outgrow) and went
to sleep. Claire slept through the night and even slept in
some so mom could say goodbye to her brother and sis-in-law
as they journeyed back home. Today is Claire's uncle's birthday
too... so wishes were in order. It was so excellent for mom
and dad to have a night out... they need to work on doing
that more often, and the kids are always asking for sitters,
so they probably need a break from mom and dad too.
Mom went back to lay in bed for a little while, then up to
get ready for church. By that time, dad was already out, opening
homes and putting together contracts, but he did come home
long enough to watch Claire while mom took the sibs to mass.
Claire has a cold and mom doesn't want her to catch anything
more, esp since she will be in daycare next week, it just
seemed like it would be good for her not to be around too
too many people today.
After mass, they had lunch and mom fed Claire more, then everyone
took a nap (Claire, brother, sister and mom), and the house
was so nice and peaceful. Later, big sis woke up and pretty
much woke everyone else up, she was hungry.
The kids were banned from the computers and told to get outside.
Mom and Claire did the couch potato thing until mom felt the
need to clean the kitchen and start dinner, with Claire watching
on from her new 'seating'. She loves that new chair. They
practiced more bottle holding and Claire had her hearing aid
in so mom sang to her a little (she was trying to pull it
out, so mom stopped singing and Claire was fine with that).
Claire had a very early bath too. It was good for mom as she
and Claire were pretty tired towards the end of the day (even
with naps) and in the morning there wouldn't be time for a
Claire was in bed by 10pm after nebulizer treatment and mom
was asleep very shortly afterwards.
woke up with her 'green gunk' nose as she is fighting a cold.
She had a fun morning as her auntie gave her much attention,
changing her diaper and making sure that if Claire wanted
a bottle, she was going to get one. They also worked on Claire's
bottle holding trick throughout the day.
Auntie put up glow-in-the-dark stars for Claire's big sister
in her room. Mom had painted the ceiling to look like clouds
a while back and bought the stars in hopes that she would
get to put them up one day so when the lights go out, it would
look like an evening sky (in cartoon land maybe... heheh.)
Dad and auntie set up the play tent for big sis in her room,
so she was also enjoying much attention. She even slept in
the tent in the evening (under the stars). Auntie also cleaned
the house and even dusted (the dust wasn't sure what the heck
was going on!)
Meanwhile, Claire's two uncles took big brother to the FSU
spring game to check out the football team. They slathered
up with sunscreen and it was a gorgeous day, highs probably
in the mid 70's.
Mom and dad went out to price kitchen cooktops for the 'new'
kitchen they are planning... they got some lunch while out
too. Afterwards, they were home briefly to regroup, make some
shakes for Claire, then out again to get dinner and see a
band. They went to one restaurant where Claire's cousin works,
and met up with dear friends, and had a drink with them (or
two) and later decided not to eat there, so everyone left
and mom and dad went out to another restaurant with an excellent
waiter (they loved him) and had an real fun time. Then out
to see a really great rock and roll band that makes an appearance
a couple times a year... then home.
was fussing, but didn't seem hungry, so mom gave her some
mylacon and a decongestant and she eventually settled down
and went back to sleep.
Mom woke her in the morning to get ready for daycare and got
a call from Grandma and Grandpa. Claire's uncle and aunt are
coming to town this weekend (obviously not the ones who already
live in town). Should be a fun weekend! Grandma will be sending
up some items with them that mom and dad couldn't fit in the
car during the Easter visit... and probably some things they
just forgot too.
Mom video conferenced with them for a brief moment so they
could see Claire drinking her morning bottle... then off to
daycare and work.
was up around 3:30am, crying. Mom held her for a while and
fixed a bottle, but Claire seemed disinterested. She appeared
congested, so mom gave her a decongestant, and eventually
Claire drank an oz of shake and when back to sleep.
Mom woke her in the morning for her bath and meds... then
gave her some pedialyte to help her congestion. She was a
happy girl and talked to dad while he tried to work. She was
sitting in her new stroller/seating next to him, and he was
very distracted and enjoyed hanging with her... she made sure
she wasn't ignored. :o)
Mom finished packing her up and off to daycare... and noticing
another new tooth - her 5th!
In the evening, Claire was in her new chair and sat with the
family at the table for dinner. She even held her own bottle
for about 30 seconds at a time... baby steps.
- Claire holding her bottle
super high speed (Quicktime) Best
cable/DSL modems (RealPlayer) Medium
phone modems (RealPlayer) Poor quality
you are having problems viewing the video, see Claire's
information about watchin her movies.
She was in bed and up again around midnight... probably just
worried about getting her taxes in on time.
had a good night, and mom woke her late in the morning. She
had an appt in the morning with a company who could fit her
for a stander. Mom wants to explore the option, but also wants
to work on her leg strength before getting more equipment
for Claire. He was a neat guy who seemed very knowledgeable
and loved working with kids... Mom was impressed with him
and put Claire in her new chair so he could check out how
it fit her. He noticed her head wasn't being supported the
way it probably should be, and offered to go back and find
a good solution for her. Mom was pleased as she had been toying
with the head support for days trying to get it right, but
with little satisfaction.
After that appt, it was off to PT and OT. They were pleased
that mom brought the new seating/stroller. It was heavy, and
took mom a little extra time trying to fit it in her truck,
and get it back out again and put together... but that will
just take time and practice (and more upper body strength
Claire's PT used the appt to check the fitting too, and agreed
about the need for better head support, and the need for a
waist belt, as there is just a vest
holding her in, nothing around the waist. She also played
with Claire with some toys that Claire enjoyed to see if she
could bring her head down more, etc.
OT worked with Claire's arm strength and then Claire and mom
were soon back home.
Dad picked up the kids shortly afterwards as he was playing
downtown in the evening with his band. Hospice nurse came
to visit and Claire weighed in at a whopping 14lbs
2oz!! A CLAIRE BAIRE RECORD!!
Her nurse said she sounded like her lungs were getting gunky
again, so mom needs to start the nebulizer again... more clear
fluids and decongestants too.
Mom got dinner ready, kids bathed and hung out in the evening,
dad got home a little later than he had planned... and he
was tired, his internet connection was down - so work would
have to wait, he just went to bed. Mom finished feeding Claire
and giving her evening meds. Claire was tired too, so everyone
was in bed by 11pm.
was up around 6am, crying. She quickly went back to sleep
by herself and mom was up shortly afterwards to get ready
for work, so she let Claire sleep for a bit longer.
Dad made shakes for Claire and mom got her off to daycare.
was up around 4am... it is getting to be a habit. Mom heard
her moving around and looked over at her... she had pushed
her self up with her right arm to get a better view of what
was going on... yeah baby, she should be holding her bottle
real soon with strength like THAT! It was so cute to see her
do it... she had pushed herself up like that before when Grandma
was holding her, it was so cute and Grandma was SO proud!
Mom fed her a couple oz, didn't make her hold the bottle.
She drank and was ready to go back to bed.. just wanted a
little midnight, er, mid-morning snack.
She was up in the morning too, ready for her bottle.
When mom took Claire to daycare, she showed off Claire's new
trick. She showed her caregiver how she was letting Claire
hold her bottle, and Claire brings the bottle to her mouth.
Then, Claire's caregiver put the bottle in Claire's hands
and noticed how quickly Claire pulled it to her mouth, and
realized she had to be quick to guide the bottle, or it could
end up in Claire's nose. :o) She was tickled that Claire had
learned a new trick... and so very proud!
has PT today, daddy said he could take her for mom, then back
Her PT went well. Next visit mom will bring Claire's big new
stroller to be sure everything is fitting her well.
In the evening, mom picked up Claire and the little peanut
was fast asleep before they got home. Mom left her in her
carseat for a few minutes until she woke up and wanted to
join in the excitement of the other kids around her talking
and having fun.
Claire has been very vocal lately... usually when mom wants
to hear tv, or is on the telephone, Claire usually has much
After dinner, the kids were off to bed and Claire finished
up her bottle and meds. Mom gave her some mylacon, as she
has the past two nights, because Claire tends to get up in
the middle of the night crying with gas. Claire was in bed
by 10pm, and mom and dad shortly afterwards. Claire did well
drinking today. She had a few oz before daycare, and then
over 9oz at daycare... then another 11 or so more in the evening.