Journal -- Nineteenth Month
was up until 2am this morning. Dad was generous enough to
stay up with her and mom was most appreciative. He said the
only reason he thinks that she finally went to sleep was because
she was just worn out.
She woke up this morning by herself and mom gave her meds
and a bath, then took her to work for a short while to keep
her away as Claire had a hearing test today and needed sleep
deprivation so she could sleep during the test.
As usual, Claire has boggled the Audiologist who doesn't understand
Claire's test results... so mom is still wondering just what
is going on with Claire and her hearing. Unfortuately, the
new ear mold isn't in, the one Claire has now she has outgrown,
but still uses as every little bit helps.
Mom took Claire to her daycare afterwards and got a bite to
eat on her way back to work.
had a pretty good weekend.
She partied on Saturday night with friends and saw the Christmas
tree go up on Friday. She loved the lights and sat and processed
them for a good long time.
Mom is very excited for her and her sibs, as Christmas should
be a lot of fun this year, they are at such great ages to
experience Christmas through different phases. At 10, Claire's
older brother is still pondering the deep questions about
whether Santa really exists. At 5, Claire's sister is imagining
everything on tv will appear under the Christmas tree on Christmas
morning... and at 21 months, Claire is enjoying the lights
and senses the excitement of everyone. Mom sees an increase
in her smiles, just whenever a musical toy is played for her
or new Christmas lights are hung.
Claire has kept mom and dad wondering each night if they will
get sleep. She sleeps through the night about every 3rd night
these days, and mom is analyzing everything to get her to
sleep every night. Mom is wondering if it is as simple as
a change in her routing... so she will be sticking very closely
with the nightly routines and bedtimes - whenever humanly
21 months old
has only three more months to go before her 2 year birthday!!
Mom will start planning after Christmas, as she expects it
to be a big blow out party.
was up at 4am. Mom was guessing she was just hungry, so she
fixed a bottle and they both got back to sleep around 5am.
Claire drank about 3oz.
In the morning, mom got ready for work and woke Claire only
to change her and wisk her out the door. She drank about 2oz
in the morning and at daycare had another 5oz.
Mom picked her up at 1pm for OT and then took her back to
daycare. Mom was a bit frustrated since the appts she is getting
are kind of out-of-routine. Mom would love to make the appts
for PT and OT a month or two in advance, and have them back
to back -- but since the referrals are approved at the last
minute (only once the previous one is about to, or has, run
out) and only for one month at a time, mom cannot get appts
without a valid referral. If she makes them, they are erased.
When they are erased, the appts need to be rescheduled and
mom has to confirm before each appt as it is time consuming
to leave work, get Claire, and get to appt, and she wouldn't
want to show up only to find it was an older appt that she
had written down, but that had been erased.
So mom has some appts at 5pm, some at 1pm... and different
therapists with each appt... when she can get them. For instance,
she was only able to get one OT and one PT appt this week.
And the OT was with a therapist who had never seen Claire,
so much of the appt was them getting to know each other...
if it were her usual OT, mom thinks even more would have gotten
accomplished... but at the same time, the new OT was a wonderful
woman and Claire really liked meeting her - Claire smiled
for her a lot today. Mom definitely thinks ALL the therapists
at Claire's rehab office are excellent.
Mom would like the consistency of one Occupational therapist
and one Physical therapist each time (dreaming!), and she
would like to make the appts far enough in advance (as she
did when she got her referral for 3 months) that they aren't
all taken, esp since 30 min appts don't seem to get much accomplished
(and the copay isn't small, but the same if it is 30 min or
45 min)... but the bureacracy of the insurance and rehab system
is keeping her from any normalicy in Claire's scheduling,
it wastes time and keeps mom's planning off balanced making
it easy to miss an appointment here or there. arg. This may
seem so insignificant to some people, but to mom, it is so
frustrating not to get appts made early, and even more frustrating
to call to find all future appts had been cancelled for lack
of referral, which is coming, etc. Why can't they let her
schedule in advance of a referral being approved... and why
can't they approve one for 6 months instead of one month at
a time? (Stepping down from soap box... whew).
was up until after 3am. Dad put her down around 2am and mom
took over after that. She was crying and crying and while
it is probably very good for her lungs, mom wants her to be
comfortable. Dad mentioned he'd given her some mylacon, so
that wasn't an option for mom. She fixed her a nice bottle
and they snuggled together on the daybed in Claire's room
and mom fed Claire. It calmed her down and eventually she
was able to get back to sleep. Still no ideas what her little
problem was, but something was surely bothering her.
Mom insisted they get a new prescription for Claire's meds
today. And after church, they did. Mom poured half the bottle
into another bottle from a previous prescription and will
draw dosages from that, incase somehow the bottles get contaminated
with use. Another theory of mom... perhaps too much time on
her hands --- yeah right!
Claire had a nice relaxing day, she fell asleep in church
and continued sleeping most of the afternoon. When she woke
up, she took her meds, from the new prescription, and had
a fun day hanging out with the kids. Later, she went to a
birthday party that her sister was invited to at a popular
pizza party place. Mom took Claire, her brother and sister
and dad met them later at the party. It was a nice evening,
and once home the kids got ready for bed. Claire's brother
turned on the Green Bay game and noticed they were down about
35-0, and he turned it back off again. Mom laughed and he
turned it back on and watched with hope that Favre would pull
off a win, only to watch him pulled out of the game... another
blow. Not being in a good mood, he quietly took his bath and
went up to bed. Claire went to bed around 10pm too, but only
after fussing and her random cries. Mom is hoping for a good
was a typical day. Claire is starting to do her 'random' cry
thing where she will be laying still and seemingly content
and then 'jump' and start crying. Mom thinks it is time for
a new prescription... and orders it.
had a terrific night.
Mom did too!
She was up bright and early, dad gave her meds after mom gave
her a hair cut. Afterwards she had a wonderful warm bath and
off to daycare. Oh yeah, she drank 6oz this morning before
going to daycare, and her caregiver is taking her to see Santa
today... along with 3 other little ones. Claire's buds, all
going on a field trip to see Santa. Doesn't get much better
than that. And with her new hair-do too!
Claire missed seeing Santa, but mom will take her a little
later, once the kids get their lists made.
Dad opted to take the family out to dinner tonight, so it
was steak for everyone... well... not everyone, only in this
family can you go to a steak house and Claire's sister orders
mac and cheese and Claire's brother gets a hot dot (substituting
his side order for a Ceasar salad). Mom discovered the flatiron
Afterwards it was frozen yogurt for everyone and then home.
had a terrific night. She had a fun day too, going to daycare
and playing with mom in the evening. The family went out to
dinner and Claire drank most of her her 9oz bottle. Then at
home, mom ate her ice cream and fed Claire with her free hand,
then Claire decided she didn't want to eat anymore, she was
full. She layed in mom's lap and fell asleep. When mom went
to put her in her bassinet, she didn't even open her eyes,
much less put her thumb in her mouth. She was a very tired
and full little baire. She had about 20 oz today.
Mom is noticing her winter wardrobe is a little small, so
she needs to dig out the hand-me-downs from Claire's big sis
and see what will fit this little-getting-bigger Peanut.
Claire a good night. Mom was pleased, she needed the rest.
Claire had few appts today, so she just took it easy, eating
a bunch and enjoying her Music Therapy. Claire drank about
25 oz today.
Mom finally found time to play with her new digital camera.
It's her early Christmas gift from dad, who knew she'd need
a little time to get used to it before the holidays came around.
She needs a little more practice before she's a film producer,
or keeps people from getting sea-sick when they watch the
videos, so take some dramamine and sit back for Claire Premaire....
here's a few videos for your veiwing pleasure:
Video 2(warming up for her first opera) dialup
Video 3 (bath & smiles) dialup
Video 4 (music therapy)
Video 5 (Red Dog)
See the video, you may have to download Quicktime
from apple.com (free).
For dialup connections, you will need to download RealPlayer 10 (free). The quality isn't as nice.
Please send your feedback to Claire if you have problems seeing
the video, they take too long to download, or you didn't have
problems at all... this way she can determine if she will
was up until about 1:30am. Crying.
Mom suspected a bad tummy ache and gave her some mylacon,
hoping it would help, but it didn't. She gave Claire some
tylenol also, just in case it was teeth, or something mom
Dad woke Claire up around 9am, for meds and breakfast. He
took her to get her flu shot, and then to daycare. Later he
got her for her PT, she had a good day, then took her back
Mom picked her up from daycare after work and Claire finished
the 3oz she had in her bottle. Mom made dinner, helped the
kids with homework and fixed dad's Palm (PDA) and talked with
grandpa on the Internet during all that. She was busy. Dad
fed Claire and she drank about 6oz more before going to sleep.
Mom gave her meds early tonight, as she had a jump-then-cry
episode, usually a prelude to a seizure, so she thought she'd
better give her the early dose and call to order new meds
soon. Claire was asleep in her swing about 9pm, guess watching
mom on the the puter wasn't exciting enough for her. Mom put
her in her bassinet in her room and will wait and see how
the peanut does tonight.
had a nice Thanksgiving.
She travels so very well, and she enjoyed visiting Grandma
and Grandpa and all her relatives. She recieved lots of attention,
and sometimes, none at all... which is also nice sometimes.
She slept most nights and averaged about 20oz per day.
She battled constipation and still kept her nasty, loose cough,
but all in all, a fun holiday!
slept well last night.
Her sister did too, but continually coughing today. Mom had
given Claire's sister cough medicine and decongestant last
night and this morning she has a mild fever of 100.
Claire still has her stuffy and runny nose, but drinking well
and had 5oz of shake for breakfast. For lunch, she will get
shakes without formula, just fruit, pedialyte and barley,
to help curb the congestion... and a bath, she's not had one
in over a day or so as mom doesn't want her to catch a chill...
but will crank up the heat in the house if she has to.
Mom called the drs office to see if the girls needed to be
seen. There are no appts left today and they close tonight
for the holidays, so they said they could go to the urgent
care center. Since it seems like Claire's sis has only a cold,
and Claire will be seen by her hospice nurse today, mom will
play it all by ear to see if the girls need to go in. The
drs office said that hospice should call them if Claire needs
anything. At least the kids won't miss school. And mom is
still working from home.
slept great last night. The past couple nights, mom has put
her on her side and she rolls over onto her back and sleeps
hard. Mom also noticed that lately she hasn't been snoring.
That's kinda neat.
Claire woke up this morning with a runny nose. Mom gave her
some decongestant, as she didn't want to eat. Looks like she
may be getting a little cold. She will need lots of rest to
get better by Thanksgiving. Afterall, there's just too much
fun to be had when family comes together!
Claire had fallen asleep around 6pm, but up again at 9pm and
mom gave her meds then.
Claire's big sister was watching tv and almost fell asleep,
around 5:30pm. So mom let her have a bowl of cereal for dinner
and got her off to bed. She was asleep by 6:30pm and had a
fever by 10pm of 101. Mom gave sis some tylenol and dad went
up to sleep with her for most of the night.
Meanwhile, Claire didn't want to be outdone with attention,
so she developed 102 temp, along with her nasty runny nose.
Mom cleaned her up and gave her tylenol, along with her regular
meds and a decongestant and Claire ate relatively well.
was up for church. Mom gave her a quickl sponge bath and picked
out a cute outfit for her to wear. She was asleep the first
half of mass, and drank a few oz, then Grandma held her and
she fell asleep. She slept all through breakfast and then
she slept for much of the afternoon. Mom fed her more when
mom got up from her nap, it was a long night last night with
the late football game yesterday and lots of family and friends
slept well through the night, and she knew she'd need her
rest because there was big fun in store all day today. Lots
of friends and family over for lunch and a fun football game
in the evening. Claire didn't get to go, but didn't even notice
as she was asleep by 10pm, but up again around 1am, as everyone
was stumbling in from the football game. Claire's team lost,
sad, but next year will be better for them... and Claire may
have a few more team outfits by then too! She's thinking of
burning the ones she has, as they didn't yeild wins like she
was hoping for.
was up only once with a cry, but quickly went back to sleep
before mom even got out of bed, around 4:30am.
Mom woke her, she was in snore-mode, for her meds and for
breakfast. Once she finished about 7oz, mom gave her a bath
and then off to daycare.
Grandma and Grandpa are coming for a visit, with a couple
aunts, and the kids are more than excited!
had a great day and a great night. She didn't drink more than
about 23oz today, but was a very good baby with lots of smiles
She had her RSV shot today, so mom picked her up early for
that and soon after they were home with the kids and dad for
a nice relaxing evening of grilled cheese, tomato soup and
nutter putter cookies for dessert.
had about 30 oz today. She enjoyed a nice Wednesday tho her
PT appt was cancelled, due to insurance problems. Evidently,
Claire ran out of visits before the referal period ended.
They gave her 8 visits for 2 months, but she goes to PT twice
a week, so it was inevitable. Mom only found out just before
the visit as the PT called to tell her she was out of visits.
Mom spent the next 35 minutes on the phone (34 of it on hold)
trying to get everything squared away. Of course, by the time
it was resolved, the appointment time had ended, so Claire
couldn't go, but it was time for her OT, and they made it
there a couple minutes late. She hasn't had OT as often, so
she still had a few visits left, but with the new increase
in visits, things were looking good. Mom had to call the insurance
back during Claire's OT visit to remind them to fax the new
referal to the Rehab office. Once it came, she was able to
reschedule Claire for that afternoon.
After OT, they had about 45 minutes to burn, so they went
home and mom got some email responses out and then back for
PT. After PT, Claire enjoyed Music therapy and her hospice
coordinator came by for a visit too. Then the kids came home
and dinner and baths.
Claire had a nice bath and went to sleep like a charm after
had a great day. She seemed to not be able to drink enough
all day. Mom is going to have to make the shakes a little
thicker to keep her appetite in check (never thought we'd
be saying that!).
Claire drank 32oz of shake today. Must be a new Claire Baire
slept through the rest of the night after waking up at midnight.
She was hungry and mom fed her about an oz before she looked
too tired and uninterested. So mom put her back in her bed and
she eventually, quietly fell asleep.
Mom woke her in the morning, and she wasn't sweaty as she usually
is. A nice 6oz bottle with vitamins and change of diaper and
Claire was soon off to daycare. Claire fell asleep before leaving
and once she hit the cool air outside, mom thought for sure
she'd wake up, but no, she continued to sleep until she reached
daycare and was just fighting to wake up, she opened her eyes
a bit while mom took her from her carseat and put her in a playpen
in a dark room at daycare so she could go back to sleep. She
slept pretty well during the night, and she was in a good mood
in the morning as she usually is. After meds and a bottle, she
was off to church and she was awake for the full mass. Still
full of smiles and finishing off her bottle. When she got home,
she drank more, this time, formula/ped, and drank about 4oz
before mom put her on the floor on her side. She seemed disinterested
in the food, but still awake. After a quick visit to the fabric
store, they were soon home again and mom fed Claire some and
they did some bicycles with Claire's legs and then mom worked
on Claire's sister's indian costume while Claire hung out in
her swing by mom, and eventually fell asleep.
She was up later, hungry and had another bottle and bath. Then
off to sleep.
She had 16oz of shake today, and 4oz of ped/formula. If she
stayed awake longer, she probably could have eaten more, but
lately, when Claire decides she's tired, it is difficult to
wake her (short of turning the ceiling fan on high and taking
off her socks, but that's kind of a rude way to wake her and
that is mom's last resort).
Claire was in bed and sleeping by 10pm.
had a lazy day. She was up drinking her 8oz of shake fairly
early, then just hanging out in her swing part of the day and
her boppy pillow part of the day and her side on the floor watching
tv part of the day. Mom had some sewing to do, and dad fed Claire
two more 8 oz bottles later in the day.
She had over 24oz for the day.
slept through the night but was up at 5am and hungry. Mom gave
her meds and fed her 4oz and put her back to bed, she was tired
and full. Mom woke her again for a sponge bath as Claire was
sweaty from sleeping, and then off to daycare, she downed another
4oz before she got there, finishing off the last few drops when
she arrived. She's showing no signs of seizures and her appetite
has picked up. Mom is thinking it is the new meds bottle.
But mom knows that all Claire's problems seem small when there
are more heart-wrenching things going on in the world. One of
them close to mom's heart is the passing of Baby
Luke, the little boy who's mom went to court to help him
was up much of the night, finally settling down around 2am.
Mom isn't too sure what the problem is, but hoping that changing
to the new meds bottle will help her out some.
Mom got a call that Claire's PT was cancelled (after it was
changed to today from Wednesday). Her PT was out sick. Then
a call about her OT appt today. Seems the Insurance company
never recieved info to 're-up' her therapy from the ped office.
sad. So now Claire had to have her appts cancelled until everything
is approved. And there is now a chance that it may not be, so
She had a nice relaxing day, waking up for her morning shake
and then going back to sleep. She slept for a couple hours in
the morning, then mom woke her to drink more and play. Mom tried
to keep her up most of the evening, but by 8pm, she was passed
out on mom's chest. Who could blame her, the only football game
on was very slow, two very good defenses, but little or no scoring.
Mom enjoyed the second half, and Claire was fast asleep in her
own bed by then. Dad had to watch the game in the family room,
as the team did much better when he was out there. Too funny.
Ol' dad can be supersticious sometimes.
Mom was in bed before midnight. Dad followed in sometime afterwards.
was fussy, and mom is thinking that with her random cries, it
is time to get a new prescriptions (even tho there is almos
1/4 of the bottle left). In the morning, Claire looked like
she had a mild seizure. Dad picked it up today, so tonight she
will get her first 'new' dosage and hopefully everything will
be back to normal. She had her hospice nurse come by with the
scale, and Claire weighed in at a mere 12lbs 10oz. A weight
loss from her last weigh-in. She hadn't been eating too well
lately, and on a good day, she has 18oz, but was throwing up
some, so mom is really hoping the new bottle will bring her
back to par.
slept through the night. She had a terrific morning, all smiles
slept through the night. She went to daycare and had a PT and
OT appt today and worked very hard. Especially at PT as she
worked her legs and did lots of rolling over while aided by
the therapist. In the evening she ate really well and was the
perfect baby, taking her meds, finishing up the end of her bottle
and falling right to sleep after laying in mom's arms for only
a few minutes. Mom put her down and she was so exhausted she
was up once with dad and he didn't say anything about her being
up too long, so it must have been just her fussing and wanting
to be held.
was up once during the night. She seemed hungry, and she drank
about an oz or two and went back to sleep.
Mom woke her for meds and breakfast. She has been in a terrific
mood all day long, including her daycare. She had about 6oz
in the morning with mom, and another 13 at daycare. At home,
she drank about 2oz at the end of a bottle, then another 4oz
before falling asleep on the couch. Mom woke her for her evening
meds and held her for a while while she went back to sleep.
She was in bed around 10pm, and mom was too. About 25oz today,
all shake, lots of calories!
|| Mom was so happy Claire slept through the night... but mom was
up off and on, checking the election results, and then rolling
over and going right back to sleep.
In the morning, it appears that George W. Bush had won, but
until the final speeches were given, no one was making that
announcement. Mom said no matter who won, she was hoping for
a landslide so it wouldn't be days of unrest until the winner
Claire had a hearing appt today to check her aid out, and the
humming seemed to have stopped, so she wore her aid most of
the day... good thing too, since she had music therapy. She
had PT before music and Mom, Dad, Therapist and Claire were
able to check out the two chairs, the KidKart and the Kimbra
Spring to see which would work best for Claire. It seems unanimous
that the Kimbra was the better chair, so the Therapist will
write up a new justification and hopefully it will be approved
by insurance and Claire will be fitted. (fingers crossed). Claire
was on top of her game today at PT, very alert and working very
hard on her legs and neck.
Claire was a bit tired in the morning, probably from her morning
bath, but she was awake in the afternoon and being a sweet little
3am, the two of them had come back into the room. Evidently,
they'd both fallen asleep watching tv, and Claire actually stayed
asleep for mom. When mom got up, she got the kids ready and
woke dad at the very last second so he could put on a baseball
cap and hop in the car to take the kids to school while mom
got Claire up and ready and she got dressed for work.
took Claire to vote, Dad met them. Claire got her own "I
voted" sticker, but they wouldn't let her vote... She was
disenfranchised, they said something about her age, but she
was defiant as she knew she looked younger than she really was.
She's still trying to figure out a way to work the system, afterall,
she was up for all the debates, she knows the issues... she
just wants a toddler's voice to be heard. Mom is still trying
to figure out why folks vote early. There were very long lines
all week for people to vote early, but on election day, there
was no lines no waiting. Claire even sat on the table in her
carseat right next to mom as mom voted.
Claire went to daycare and, after drinking 5oz of ped/juice
for mom in the morning, she had another 13oz of shake at daycare.
At home she drank the rest of a 4oz bottle, then another 8oz
all before going to bed. Mom fixed another 3oz bottle, wondering
where Claire would put it, as she seemed full, but still hands
in her mouth. She put Claire in her bed while she fixed the
bottle, and within 3 minutes, she was back to get Claire, who
had fallen asleep. She slept through the night!
was up pretty much all night. She finally started to doze
off at 2am, but then woke up crying. Mom was exhausted and
getting frantic as she'd already given Claire mylacon for
gas and tylenol for teeth. Claire was so unhappy. Mom woke
dad up, she figured he'd gotten enough sleep by then, and
asked him to take over. He very sweetly acknowledged that
she needed a break and let her get some rest.
Mom woke up in the morning and Claire had been sleeping since
her dad had worked his magic. All mom knew was that 3 hours
of sleep was better than none and she had a big meeting that
afternoon and needed to get ready for Claire's Ped Orthopedic
The appt went well. They took xrays of Claire's spine and
neck and saw nothing wrong aside from the twisting. The dr
said it could all work itself out (straighten itself out)
as she grew, but thought that a second opinion would be in
order. So he suggested a visit to Shands Children's hospital.
Mom needed to make an appt with the geneticist there too,
so it could be a two-bird-one-stone thing. He reiterated that
seating would be beneficial and mom said that it was in the
After the appt, mom went over to see the new Kimba Spring
chair that had come in and compare it to the KidKart to see
if she liked one over the other. The Kimbra seemed a bit lighter
-- both were very heavy and mom was wondering how she would
manange this 'stroller' without quite a few visits to the
gym to work out... *QUITE* a few... heheheh!
Mom got to work and got to her meeting on time. Then back
to work to get some new ideas rolling.
Mom took Claire back home and dad watched her until he took
her to her PT appt. Then he took her to daycare were she was
about 2 hours and 5oz later and mom brought her home after
a long day at work. At home, Claire didn't drink much and
mom put her on the couch with a bunch of toys. Evidently,
she wasn't too impressed with mom's selection of toys, as
mom came back to check on her after starting dinner only to
find she fell asleep sitting up.
Mom thought they might be in for a long night, so she got
Claire to bed a little earlier than usual (including meds
a little earlier) and went to bed herself. Sure enough, the
little peanut was up about 11pm and dad came to get her.
was a busy day, and after church, Claire's sister took a nap
and her brother watched football and played in the yard. Claire
had a fun Halloween day. She dressed as little blue bear and
was cute and cuddly as her usual self. Her sister was Cinderella
and her brother was the Grim Reeper... boys will be boys.
The kids had fun dressing up and they went to a retirement
home, then off to visit friends and hit the busy neighborhood
for lots of candy. Pictures coming soon.
had a pretty good night. She just hung out all day on the
couch... eating and playing with the kids. Mom spent much
of the day cutting out a dress for Claire's sister, and fixing
a costume for Claire's brother. They all watched the big football
game and were very disappointed with the outcome. Oh well,
just a game.(x-large pix). Claire did have a good photoshoot while enjoying the
game. She was decked out in her football 'garb'.
was up until after 1am. She settled down several times, but
then let out a fuss and started crying. Mom started by feeding
her, but after a couple oz she seemed disinterested.... mom
put her down... Claire started fussing... mom picked her up...
tried feeding again... Claire drank a little... mom put her
down... Finally, mom tried Tylenol. Claire had her hands in
her mouth a lot and with that new tooth, the droolling and
the basic overall pitiful look, mom is thinking it would help
her out a little, and maybe everyone could sleep. By 1am,
Claire was still not happy, and her cries were just as pitiful,
so mom gave her some Mylacon. Mom also noticed a very firm
BM in Claire's diaper, so perhaps she was also working on
that. Shortly after the Mylacon, Claire settled down and finally
stayed that way. Good thing too, as mom was running out of
Claire slept until mom woke her in the morning. She got her
antibiotic, seizure med, decongestant and then finally her
bottle. Of course mom took some pix along the way. A face
cleaning and a cute outfit later and Claire was off to daycare
and mom to work.
was pretty tired today. She woke up to find the Red Sox did
win the World Series. Dad was really happy, but nothing compared
to Claire's brother bouncing off the walls. Claire is hoping
that dad's taping of the final game went well.
Mom gave Claire her nebulizer treatment, since she didn't
get one last night (the Peanut was just too tired).
It was her first day back to daycare and mom was glad to be
going back to the office. Mom started her off with 3oz of
Juice and pedialyte and then she finished 9oz of shake at
her daycare. At home, she drank another 8oz, but never seemed
to be full, but very tired. Mom gave her an evening nebulizer
treatment and fed her a little more then put her in her bassinet
was up at 4am, appearing hungry. Mom was certain that if she
fixed a bottle, Claire would be back to sleep before she was
done fixing it, so she got up and checked on her in about
2 minutes and Claire was back asleep, no bottle.
By 6:30am, mom was up helping dad get the kids off to school
and Claire was just waking up for bottle and meds. After she
drank, mom cuddled with her and she fell back asleep in her
arms, so mom put her back down for a morning nap.
Claire was up around 11am for her bath, then PT and OT, and
home for Music Therapy (MT). She was very vocal and energetic
all morning and her PT was very impressed. She had some nice
loose coughs and even coughed up a little phlem, so they are
finally getting more productive. After MT, mom tried giving
her her antibiotic, but she had just finished a bottle, so
she didn't want anymore to 'eat' and pushed it out with her
tongue. Shortly afterwards, her hospice nurse came by to check
up on her and she had fallen asleep (MT is very relaxing),
so her nurse had lots of cuddle time with her and weighed
her in at 13lbs 3oz. Her nurse said that mom should continue
the nebulizer treatments at least two more nights and that
the antibiotic will really make a difference by tomorrow.
She will check back in on Claire on Friday so she can leave
a note for the on-call nurse at hospice. She said Claire was
sounding much better already, and not losing weight, she looked
good, good color too.
Claire fell back asleep after her nurse's visit, in her boppy
pillow. Mom will let her sleep for a while, she had a long,
Mom was able to make a little side trip today while dad watched
Claire and mom picked up some fabric. Claire's sister wants
to be a Disney Princess for Halloween, and mom got some fabric
for Sleeping Beauty (plan B will be Cinderella, as she already
has that dress). Claire's brother wants to be the Grim Reeper,
so mom just needed a ton of black fabric... the challenge
there was getting it for a good price, not a problem. Mom
will be very busy on Saturday getting costumes ready for the
big night. Claire's brother has testing starting on Monday
after Halloween night, so there's a real challenge there.
Probably a Sunday afternoon nap will be involved.
In the evening, Claire was planning on staying up for the
lunar eclipse and the Red Sox game. As she and mom played
on the couch, mom noticed something new in Claire's mouth...
a TOOTH! Her second one!!! Mom was so excited!!!
Later, mom took her out to see the moon, but her eye's started
getting heavy... it was nice and dark out and not too cool,
just a beautiful evening and all that fresh air was affecting
her. Claire figured the Sox would be on again tomorrow night,
because the odds of them sweeping the World Series (after
winning 4 games in a row in the playoffs) was unheard of.
Especially when they hadn't won a series in 86 years, let
alone a sweep.... Claire wasn't too worried about missing
out, besides, dad was taping tonight's game. Claire went to
bed and went straight to sleep. Good baby. Mom followed shortly
slept comfortably through the night. Mom pulled the bassinet
closer to her bed so she could keep a closer eye on Claire without
putting her in the bed with them. Claire still has the cannula
on for extra O2, but mom has it set pretty low. Mom lowered
it last night as Claire's little nose was tender and she had
a slight nose bleed, likely from the oxygen, tho it goes 'through'
water in the concentrator.
Claire was up at 6am and crying. Mom gave her a couple oz of
food, but at first she just wanted to be snuggled and happy
to be in her mommy's arms, then she decided she was hungry and
ate, after her meds. She snuggled a little more afterwards and
fell asleep. Mom put her in her bed and went to help dad get
the kids ready for school.
Claire slept until close to 1pm. Mom felt that sleep was the
only thing she really hadn't had much of in the past few days,
since she's been eating so well, and thought she would need
it most. At 1pm, mom pulled the covers back and she eventually
woke up. She had her antibiotic and drank another 8oz of shake,
the last 2 had formula in it. Mom took a shower and when she
got out, Claire had fallen back to sleep. The problem is her
2pm meds, mom will have to wake the peanut for them.
Mom called the hospice nurse to double check that the dosage
was what the dr prescribed. The nurse said she didn't get why
the pharm couldn't read the script, since she wrote down the
dosage for her records from the original script at the drs office.
Okay Okay... time to change pharmacies... there is a new one
going up a mile from Claire's home, mom will likely switch to
that one when it is opened.
Claire had a good evening, finishing off the day with close
to 22 oz. Mom put her on 'blow by' oxygen tonight and Claire
had meds and fell asleep on her boppy on the couch before mom
could give her her bottle. When mom moved her to bed, she woke
up and nearly finished her bottle, as she fell asleep in mom's
lap drinking. Mom put her to bed close to 11pm and got to bed
around 11:30pm too.
was breathing hard at 3am. Mom got up and cleaned out her
nose, gave her a decongestant and changed her position and
put her back down to go to sleep. She seemed to be breathing
Mom woke her up before breakfast and cleaned out her nose
again (saline and nose syringe) and gave her another decongestant.
Claire drank 3oz of shake and went back to sleep. She wakes
up every 15 minutes or so, and then looks around and goes
back to sleep. She isn't sleeping too deep.
Mom spoke with the drs office and the ped won't be in until
this afternoon, so Claire has an appt with him today. She
spoke with Claire's hospice nurse who said she could come
by around noon, or meet them at the drs appt. Mom is hopeful
an antibiotic will do the trick, but thinks that after the
appt, there will be a chest xray ordered and probably a blood
test to help determine the nature of what Claire has. The
poor little peanut.
The drs visit went very well (mom thinks). Claire was up to
13lbs 5oz!! He listened to her and agreed her lungs were 'gunky'
but said they'd been much worse before. He said that Claire
could use help from a nebulizer, used for opening bronchial
tubes, as she was wheezing. He wrote a prescription for that
and for an antibiotic. Mom's favorite for Claire, Zithromax.
It was the one that seemed to pull Claire through with every
pneum (when the drs would finally give it to her). Mom is
confident Claire will be on the mend soon (fingers crossed
and prayers to heaven!). No bloodwork, no xrays. And that's
more than fine with Claire.
Claire's hospice nurse met them at the drs appt, and helped
Claire and her mom at the place where they needed to pick
up the nebulizer. She's so wonderful!
Afterwards, mom picked up the kids from school and dropped
off Claire's prescriptions and then home. Dad said he would
go pick up the prescriptions a little later. Mom had enough
solution to give Claire a nebulizer treatment shortly after
they got home.
Mom fed Claire more food, this time, adding some formula so
it would stick to her 'ribs' and Claire enjoyed it. Then mom
and dad fixed dinner and mom put Claire back on her oxygen.
She'd been off it since just before her dr appt and had very
nice color the whole time.
After dinner, dad went to get the prescription, but only came
home with the nebulizer solution. Mom hated to tell him there
were two prescriptions and he didn't get the antibiotic, he
wasn't too happy, but went out again. Shortly afterwards,
mom got a call from him (couldn't be good news when hubby
calls from pharmacy). Evidently, they didn't get the prescription...
mom vowed she gave them both in together and dad said he'd
call back. He called back and said they did get the prescription,
only they didn't fill it because they couldn't read the dr's
instructions, and left a message for him to call them. Well,
it was late enough in the day, so odds are the dr wouldn't
have gotten the message until morning. Dad was not happy,
and he called mom. Supposedly, no one at the pharm knew about
this until dad was there for a little while, if they knew
and told him up front, he would have understood the situation.
Mom asked dad (who wasn't too thrilled about waiting at the
drug store) to give her just 2 minutes, she called hospice
and asked them if they could help. Hopsice suggested just
getting the script filled so dad could come home, and they
would continue to work on what the dosage would be as the
prescription was filled and brought home, then mom could give
Claire the meds with the proper dosage. They offered to call
in and give them a dosage. Mom told them how much Claire weighed
so they could figure out the dosage. Meanwhile, at the store,
the person helping dad, after communicating with
hospice, decided her shift was over and started leaving. On
her way out, she passed the buck to a pharm who refused to
fill the prescription, since the instructions were not legible
and the drs office hadn't called back... this caught dad's
ear. Poor dad. Didn't say anything... just listened to the
conversation between the two. The first pharm convinced the
second that she had been working to get confirmation of the
dosage, and filled the second shift pharm in.
called in an approximate dosage based on what she'd gotten
last spring when she was at the hospice house, so the pharm
would fill the prescription, and then the pharm called mom
to say the dosage didn't seem right (as this strength was
higher than in the past), so they wanted to call the nurse
back (they didn't know she was at hospice) and needed the
number, mom gave it to them. Finally, after a very long wait
on dad's part, the prescription was filled. Hospice called
mom back with the correct dosage, confirmed by the drs on-call
nurse, and when dad got home, mom gave Claire her antibiotic...
Dad was at the pharmacy a while and used his time wisely...
he was 'hanging out' with the store manager giving him a nice
long story about his evening... asking, 'am I expecting too
much?'... the manager kindly agreed that he wasn't... and
mentioned that customer service isn't high on the list of
classes at pharmacy school.
Claire took her meds and drank another 2oz (26oz for the day)before
snuggling with mom and falling asleep. Mom put her back in
her bassinet and covered her with a blanket. Sweet dreams
didn't seem to ever go to sleep. Mom checked on her around
1am and she was still awake but being very good. Just breathing
a little hard.
She seemed tired, mom fixed her another bottle of ped/fruit/barley
and she drank 4oz and mom held her for a while while she slept
in mom's arms, then mom moved her to the swing for a little
while and watched her doze in and out. Eventually, mom put
Claire between her and dad. Claire still has a nastly loose
cough but no fever.
In the morning, Mom woke Claire for meds and called hospice
to have a nurse come out and listen to her. Mom bathed Claire
with the oven cranked up and the kitchen doors closed to keep
th warmth in the kitchen. Mom took off Claire's cannula (oxygen)
and Claire enjoyed her bath, it was the first in a couple
days Claire had a bath
as mom didn't want her to catch a chill, but decided it was
time to clean that baby up. After her bath, she finished off
her 7oz bottle and started another 6oz, still no formula in
her diet as mom is afraid it will congest her even more. The
hospice nurse came over and confirmed that her lungs sounded
gunky (they usually did anyway) but mom thought there was
a little 'squeek' to her breathing. They took her O2 levels
and she came in at low 90's/upper 80's without the cannula
on. She didn't really know what to tell mom, and mom didn't
know what to ask for, so they decided to put the O2 back on
Claire and continue what she's doing until tomorrow when Claire's
nurse could come see her, and Claire could see her doctor.
Claire was pretty miserable in the evening. Mom thought she
might want some formula, so she offered her a shake with formula
in it, but Claire only drank an oz of it... so mom gave her
more of the pedialyte shake. Claire had 28 oz of fluids today,
so Pedialyte, some ped shakes with fruit and barley. At least
her appetite is good, and it seems to be soon after a decongestant.
was still sick today. That cold is really getting her down,
she's been more fussy than usual (tho she typically isn't
fussy, so that isn't saying too much). Mom stopped giving
her formula and she is on a diet of ped/fruit/barley in her
shakes. She loves them. First thing this morning, mom gave
her about 4oz of bananas, straight from the jar, by spoon.
She couldn't eat them fast enough. She did eat really well
today, considering her 'under the weather' -ness.
spent much of the day feeding her and putting her in her swing
(so she'd be upright) to sleep and Claire spent much of her
day eating and sleeping. She was very congested and mom gave
her decongestants every 6 hours to keep her head cleared and
she continued to have a very loose, very loud cough, but keeping
her food down until she got her decongestant around 10pm,
and that made her bring up about 1/2 oz of food. Overall,
she had about 22oz for the day. She does have a good appetite,
so mom's hoping it is just a cold. Mom put her to bed between
mom and dad so she could keep an eye on her as she was waking
up with a cry and her breathing looked a little labored. She's
got an O2 cannula on tonight.
slept through the night in her bassinet and was a very good
baby. She would wake up with her nasty cough, it is loud and
loose sounding, and she'd cry like it hurt, maybe a sore throat.
She went to daycare and mom told her caregiver that Claire
was coming down with a cold. There was a child at the daycare
who was getting over a cold, and evidently it was 'going around'.
Topped with Claire having a flu shot on Wednesday and an RSV (upper respiratory) shot on Thursday,
it seemed she was bound to get some little thing. Mom is trying
not to worry, just keeping Claire's tummy full and making
sure she gets lots of rest.
Claire seems to breathing fine, but given that she has a cold,
mom plans on keeping her on oxygen until she feels better.
She called hospice to see if the nurse could come listen to
her, but her nurse wasn't in today, and they said they could
send another, but mom felt that another nurse wouldn't know
what Claire typically sounds like (as she typically has a
gunky sound in her lungs anyway), and though that if it is
just a cold, it could wait until Monday, if it gets worse,
then they could send out a nurse over the weekend. Claire
had about 20oz today, so she's at least eating well.
was up around 4am, she wasn't making any noises, but mom woke
up and checked on her. Knowing she would cry if she were hungry,
or chew on her hands, she was just laying there with her eyes
open looking around. So mom let her stay in her bed and went
back to sleep.
In the morning, Claire was fast asleep, and mom wondered just
how much sleep she really got, and if she often woke up like
that and was a sweet baby, hanging out and going back to sleep
on her own.
She was up for meds, then 4oz of shake with vitamins and fluoride,
then another 4oz of shake before heading out to daycare. She
will have Music Therapy this morning at daycare, since she
missed it yesterday. She will have her RSV shot later today
(dad will take her) and she will meet with hospice at the
end of the day (mom will meet them at home so dad can run
errands). Guess mom's busy Wednesdays are spilling over to
busy Thursdays for Claire, but mom has lots of help. (Thank
had a good night's sleep and was up for meds and shake (first
4oz with vitamins - yuk!).
Claire started her day off with a bath, then off to the dr's
office for her check up. She weighed in at about 12 1/2 lbs
and mom thought with all the BMs lately that she'd lost some
weight (a heckofa way to loose weight). The dr said she could
get a flu shot, so she got the first half (they divide the
shots into two when it is the child's first flu shot). Last
year, her sibs got the shots, but this year, the family won't
be getting shots, and Claire will still be very exposed between
daycare, dr's visits, sib's exposure and therapies at the
pediatric rehab center. She goes back in 4 weeks for her second
shot (nurse only visit) and her appts will now be every 8
weeks instead of every 6 weeks. Goo Grrl!
After dr's visit, she was off to PT where she was on her tummy
on the ball again... legs outstretched and the first time
she came down on her feet, she stood! Of course, she was still
leaning on the ball, but using her legs like she will need
to when she learns to walk. Claire needs one of those big
balls at home for playtime with mom. Ideas for Santa.
After PT, Claire was home and drinking another bottle. Then
mom put her in her bassinet to see if she would sleep, but
no luck. She didn't sleep all morning or all afternoon. Later,
after the kids school was out, Mom and Dad went to meet with
one of the kids' teachers, Claire slept through the visit.
It was nice meeting with the teachers and hearing all good
things. Mom and dad requested the meeting to kind of keep
the lines of communication open, and see how to get/keep their
child on track. It was very productive... and good things
are in store.
After the meeting, mom and dad went to watch Claire's sister
in her afterschool dance program. And then everyone went home
for dinner. It was pizza night (as every Wednesday is) and
a family friend brought over the pizza. After dinner, he watched
baseball with dad and held and fed Claire.
Claire kept eating and eating, she had about 22oz for the
day, and ended with about 12 of those oz in a 2hour period
at night. Mom decided to just put her down, even tho she didn't
seem too tired, because she wanted her little tummy to settle
down and didn't want to see any of Claire's food for the second
time. Claire eventually went to sleep, tho she really wanted
to stay up for the entire game (7th game of the American League
Playoff Series) Dad was cheering on Boston, and mom decided
the game would go too long for her to watch, and she'd just
get the score in the morning. Besides if Boston lost after
all they'd been through, she didn't want to hear what dad
had to say... it couldn't be good. Once Claire was settled
in - half asleep as her eyes were getting heavy, around 10pm,
mom followed right behind.
was sleeping through the night.
She had a banner day as she drank 6oz of formula/ped in the
morning, and at daycare she had another 10oz. At home, she
polished off the bottle with another 2 1/2 oz in it, and then
another 4oz of shake. Later in the evening she drank 5 more
oz and fell asleep. That is roughly 27oz for the day... Go
was up at 3am. She seemed like she could be hungry(hands in
mouth), but before mom got her bottle ready, she had thrown
up. Mom thinks she just had her hands in there too far. Dad
cleaned up the bassinet while mom cleaned up Claire and offered
her some shake. She didn't seem interested, but still seemed
hungry and mom realized she was congested... probably just
the thing that woke her up to begin with. Mom gave her a decongestant
and held her for a while and she looked very tired, so mom
put her back to bed.
In the morning, mom woke her for meds and breakfast. Mom gave
her fluids to help with congestion and constipation, then
off to daycare. Claire drank 4oz of formula with ped mixed
in for added flavor.
slept through the night.
Mom and Claire slept in a little longer than usual, and mom
woke Claire for meds and bottle. Mom was planning on bathing
Claire for church, but time got too short and Dad's cousins
were still in town, so he opted to stay home with Claire.
Good thing too, as he was able to give her some time and she
drank 6oz with him. When mom got home it was a good time had
by Claire as she finally got her bath, and she loved it!
Lately, Claire has had a blister looking sore on her heal.
It is puzzling mom as the only thing Claire is close to that
is 'hard' is her carseat. Mom put some neosporin and a bandaid
on it and a sock.
She hung out at home all day, from boppy pillow, to someone
holding her and back and forth. She took a nice nap after
grandma arrived and wanted to play, but mom realized after
a couple hours that Claire needed to wake up, and also that
it was pretty warm, so she opened the windows and turned on
the attic fan, and soon it was cool, and Claire was up. She
had socks on and a one-sie outfit.
Claire took her meds in a timely manner and was asleep by
9:30pm, and mom followed her. It was a long, fun weekend.
Claire drank about 18oz of shake today.
slept through the night.
She was up early and mom was feeding her and getting her ready
for a bath. She enjoyed a nice cool morning at her brother's
flag football game, then home so mom could bake some yummy
brownies, cookies and finish off the chilli for post game.
It would likely be too late to have it then, but you can always
In the afternoon, dad's cousins arrived for the game. Everyone
had chilli and then off to the big game... number 7 vs number
6! After a terrific game, and getting home close to midnight,
everyone was exhausted and ate sandwiches and crashed and
burned, including Claire. She was up when mom got home and
mom fed her more of her bottle and she fell asleep quickly
in her bed. She had close to 20oz of shake today.
slept through the night. She made a few noises, and at one
time it sounded like she hit her 'cup' that the O2 comes through...
she will do that sometimes if it is in her face... but when
mom checked on her, she appeared sound asleep. Around 3am,
a thunderstorm was passing through and woke mom up, but she
had little trouble going back to sleep.
Claire's sibs are off today, and dad has been so gracious
as to watch them. They are old enough that they can entertain
themselves and he can get work done, so mom can get to work.
Claire was up for her usual med and breakfast. Mom put her
vitamins in her shake... they are nasty smelling and probably
not too great tasting either, but she downed them quickly
in 3oz of shake... mom as pleased. It was only the second
time mom had given them to her, but it will be a morning ritual
now. They have fluoride, in them to help Claire's 'tooth'
grow strong... and of course, the additional teeth hiding
just under the gums.
Claire was at daycare for a short while when mom had to come
and get her for PT. Today, she played with a few toys... she
gripped them and then kinda zoned out... the therapist said
it looked like she was thinking about how the toy felt in
her hands. She also layed her on a very large ball and straightened
out her legs... Claire kept flexing her knees and hips, but eventually kept them straight long enough so the therapist
could roll the ball around and Claire put her feet on the
floor and stood there for a minute or two. Mom was so very
fascinated!! It looked like Claire had all the 'tools' to
stand, just needed more muscle tone. It was very cool for
mom to see Claire stand as she continued to lay against the
ball. The therapist also put Claire on her leg in a 90/90
position (sitting upright) and then leaned her head over her
knees and toes... then lifted her up by her bum (about an
inch or two) and let her come down with a bounce. The therapist
telling her all the while how fun it was... and when she stopped,
Claire looked at her and started to talk to her. Claire had
a peculiar look on her face. The therapist looked at Claire
and said, 'do you want me to continue? Is that why you are
looking at me like that and talking?'... so she continued,
only to have Claire use her own legs to lift bum up and the
therapist guided her... and the therapist looked up with the
biggest eyes!! She was amazed at what Claire had done and
mom was too!
Mom took Claire back to daycare and showed Claire's caregiver
how to help her 'bounce', and mom went back to work. Meanwhile,
Grandma and Grandpa were comin into town for the big game!!
slept right through the night. She had a pretty good day today,
probably close to 19 oz for the day. In the evening, mom got
an email from the hospice nurse with the results from the
med levels... she is about a 6, where normal is between 4
and 10, so Claire's in a good range and her meds won't have
to be increased any time soon. Mom is very pleased, esp with
the weight gain, to not have to increase the dosage is great.
Mom gave Claire a haircut today and a bath. The Claire Haire
was getting a bit unruly, and mom took matters into her own
hands. She thinks it looks pretty good and Claire thinks the
jury is till out on that.
In the evening, Claire relaxed, had her bottle and hung out
with mom doing exercises. Mom had her little legs doing bicycles
and stretches, then her arms, even her hips and Claire was
all smiles... she loves the stretches! Mom could see her little
heart pounding and her breathing heavier, as if she had been
running, so it was time for a little break from the stretches,
and evidently, the cardio workout.
Claire was in bed by 9pm, mom gave her her meds early so everyone
could get some much needed rest.
Luke Winston-Jones and his mom in your prayers. He has Trisomy
18 like Claire. Read
more about him.
Keep Baby Charlotte Wyatt in your prayers too. She was, born
weighing just one pound with serious heart and lung problems.
The courts have ruled that she will be allowed to die in a case
similar to Baby Luke's.
While these are very hard decisions for doctors and courts,
nothing runs deeper than a mother's love for her child.
To send an email of support, you can visit Luke's page.
slept right through the night and not showing signs of seizures
or fever. She is eating better and appears to be back to her
old self. She's been a little more tired, but hopefully more
and more food will help that.
She had a busy day, starting with PT and OT. She fell asleep
after PT, so was useless during OT. She came home and was
still asleep for Music Therapy, and after that, off to the
eye dr appt.
The eye dr said she had a condition that makes her eyes 'jiggle'
(not the technical term of course). Mom asked him to write
it down and it will be posted. She said she wanted to look
it up and the dr cautioned her that looking this up may be
upsetting as it can be very serious, tho some people with
it can get a driver's license and see fine. Mom said she was
aware of misleading websites and would proceed with caution...
mom doesn't feel like she needed to avoid looking it up and
reminded him that she's had much worse news in the past and
could handle whatever was on the Internet... she added that
she found comfort on the Internet when she got Claire's initial
prognosis before Claire was born and was able to see survivors
and know that it didn't have to be the way the drs said it
was. He understood.
After the dr appt, mom learned that Claire's hospice nurse
was going to come out to the house, but since mom was only
a few miles from the Hospice office, she popped in. It was
nice seeing some of the folks there, while Claire was doing
well, and when the nurse weighed Claire, she came in at 13lbs
even!! A banner day!!
had a great night and seems to be doing better. She ate 20
oz today, tho some was squirted into her mouth to 'kick start'
her eating today.
made a few noises during the night, but when mom when to check
on her, she was fast asleep.
She was awake fairly early and didn't go back to sleep as
her brother was leaning over and kissing her every time he
would walk by her. She was warm this morning, about 101 degrees
F rectally (that's 100 normally) and mom didn't think that
warranted Tylenol. She soon became cool, so it may have just
been that she was too warm in her bed.
She had very mild seizures throughout the morning (maybe one
every 30 minutes from 8am until about 10:30 when she went
down for her nap. Mom put her cannula on her to help her breath
easier and gave her some Dimetapp to help her breathe and
eat a little better. She didn't sound congested, but mom didn't
want to take any chances that that was why she may not be
eating well, and she hasn't had a decongestant in weeks...
She drank about 4oz of shake... tho painfully slowly.
In the afternoon, after her nap, she woke up and had her meds...
she was up around 2pm, and mom took the meds out of a new
bottle, just in case it was a little stronger. If it is stronger,
and she does well, she will likely start eating better and
feeling better as a result. Her body temp seems to be nice
and cool, so maybe her little bug has gone away. Mom is home
with her all day to see that she eats well and keep an eye
on that temp and the seizures...
She finished the day with about 17 oz of food.
had a long night. The word that mom got was that she was up
until 3am, as she was at her uncle's home for a Claire weekend.
He said she wasn't fussing, just awake... and so he was awake
too. Evidently, the comedy channel had some really good stuff
on, so Claire's uncle was entertained as he stood watch.
Mom and dad went to a brunch in the morning and went to pick
up the kids. They ended staying at Claire's uncle's home for
most of the rest of the day. Mom and dad were told that the
kids were very well behaved. And Claire was a lot of fun.
Claire had only a few oz all day, as she'd spent most of the
day sleeping... and mom didn't have a problem with that, as
she knew Claire had been pounding away the bottles and frequently
filling diapers throughout the night.
Around 3pm, mom held Claire and she was very warm. Her temp
was 102.2 rectally (101.2 normally). Since it was early, mom
gave her Tylenol, knowing in 3 hours she would know if the
temp spiked up again. (If it were late, she may have opted
for Motrin or Advil to last longer). By evening, Claire was
still cool and drinking better. She went to bed and fell asleep
slept through the night.
The family was up early as Claire's brother had a flag football
game at 8:30am, and pix before that. Mom changed Claire, gave
her meds and fixed a bottle. They rushed out the door and
Claire had a wonderful morning in the fresh air (it was overcast
all morning and very cool) under her blanket, drinking her
bottle. By the time the game was over, she finished off 7oz
of shake and was ready for her nap... she fell asleep, but
woke up once they got home and stayed awake for most of the
day. Mom packed up the kids for their Claire weekend at her
uncle's home and off they went to drop off the kids. Claire
was fast asleep when they arrived and slept for the next 30
minutes or so, until she woke up hungry, and had a messy diaper.
Mom and dad were off to look at a few houses that dad had
in mind for a customer or two, but only after getting ice
cream. They home to shower and get dressed for dinner at Outback,
and later home to watch the FSU vs Syracuse football game...
it was a good game, but a little too close for mom... she
called to check on the kids during the game and everyone was
doing well. Evidently, Claire's cousin was going to homecoming
and was getting ready. Cuz had on a beautiful gown and was
wearing makeup, something that Claire's sister is very fascinated
with, so Sis was so excited for her cousin. And when her date
arrived, Claire's sister referred to him as the 'prince'...
guess she does watch way too many Disney movies... but exciting
all the same!
slept through the night.
She appears to be eating very well and resting frequently,
like all good babies. Mom realized it was a Claire weekend
this weekend and thought it would be really nice as they have
a brunch to attend to on Sunday morning and this would help
out a lot with sitter problems.
slept through the night.
She was up for meds, breakfast and a quick spongebath before
heading off to daycare. She drank 5oz before leaving and another
11oz at daycare.
She had a quiet evening at home, playing with her mom and
swinging in the office while mom got some work done in the
evening. A nice warm bath rounded out the evening and mom
put a nice big t-shirt on her before bedtime, just seemed
like a comfortable thing for Claire to wear to bed and she
looked so cute in a real shirt. She's really starting to fill
out more, her little legs and arms are getting 'thicker' and
she's been so alert and ready to play lately.
slept through the night.
Mom woke her and started her on meds and breakfast. She drank
nearly a bottle and mom gave her a bath, then she finished
off the 8oz. Since Claire didn't have OT or PT today, and
the hospice coordinator was sick and not coming to visit,
mom checked in with the nurse and MT and they said they would
come later. So mom packed up Claire and took her to daycare
and went to work. This, after Claire was still hungry and
drank another 2oz before daycare, falling asleep on the way
Work has been hectic for mom lately, so she's keeping busy
there, and time has really started flying by. Halloween costumes
need to be made and cookies need to be baked now that the
weather is getting dry, cool and breezy. Fall is such a nice
time of year, so similar to spring, only with football!
Mom met Claire's hospice nurse at her daycare to get a blood
level for her meds. She couldn't get it, so mom will probably
meet her again tomorrow, or go to the lab. These levels need
to be taken fairly frequently, esp when she has seizures,
as they determine if the dosage needs to be increased, etc.
Claire drank 5oz at her daycare, and didn't really fill up
a lot at home, as mom put vitamins in her formula. She is
getting teeth now, but doesn't get fluoride, so her dr prescribed
liquid vitamins with fluoride, and it doesn't taste all too
good... well, it just stinks, so mom is certain it doesn't
taste good in the least! Claire drank her vitamin filled 8oz
of shake in the evening and went to sleep in mom's arms when
she was done, around 9:30pm. Dad had band practice, so mom
opted to crash and burn herself... falling asleep to the sounds
of the oxygen concentrator and Claire's snoring. Both being
very loud, but soothing to mom. Claire finished off the day
with close to 23oz of shake.
slept through the night.
She's been a dream baby! Eating like she should, tho still
very slowly, eating well all the same. She's been so happy
and pleasant. Mom got her up this morning for meds and breakfast
and was greeted with a little smile, and a messy ol' head
of hair. Mom's thinking a haircut may be in order again, as
the hair gets quite unruly. Claire was off to daycare, only
to be picked up again for PT and OT appointments. Her 'referral'
runs out this week for PT, so mom is hopeful that the HMO
will renew it, if not, Claire will not get treatments until
who-knows-when. Her OT treatments go for another 2 weeks,
so she will at least have something for a little while longer.
Mom is nervous that it won't be renewed, and Claire is making
such great strides! Mom thinks that maybe her increase in
eating is partly because of the therapies. It was a good day
for Claire today, working on sitting up and on reaching for
toys. Mom is hopeful that with the therapy, she will be able
to do both one day, and maybe even bring food to her mouth
to feed herself. It's a big dream of mom's, but that's how
they got here... dreaming.
Mom and dad were trying to listen to the debate, but Claire
was on mom's lap and noticing that mom was looking elsewhere,
so she started to talk... and loud. So much so that mom had
to turn up the tv, and dad was laughing. At one point she
quieted down, but had her hand up in the air and was looking
at it as if she just realized what she'd been putting in her
mouth so often. The hand was straight up in front of her face,
and she was looking at it for about 2 minutes. Then back to
talking, loudly, to mom... so mom started to talk to her,
and Claire was squalking back to her... and dad continued
to laugh at them.
slept through the night. Whooo Hoooo!
Dad stayed home with Claire today. He's a great dad!
Mom went to work after Claire drank 8oz of shake, and when
she got home with the kids, dad said Claire had another 10oz.
In the evening she drank even more, finishing off with 30oz
for the day!
slept through the night. Way to go Claire!
She had a banner weekend, averaging around 27oz per day! Today,
she got up for church and had a nice time there, drinking
5oz. Mom would have made her more, but she'd just finished
8oz at home an hour before leaving. Dad held her towards the
end of mass and mom and dad were relieved that she fell asleep,
since the bottle ran out (mom could have made more, as there
was some spare food in the bag). Once home, she slept for
a short while and mom took a little power nap once dad got
home from showing a house. In the evening, Claire's aunt and
uncle came for dinner and brough steaks. It was most delicious
and they had angelfood cake with strawberries and whipped
topping for dessert. yum.
slept through the night.
That's our grrl!
She was gearing up for a whirlwind day!
She went to her brother's flag football game at 8:30am and
slept through most of the game. She loves that fresh air,
soft breeze and cool temps. Once the family arrived home,
the sitter was waiting at 10am and they were off again to
a 12-noon football game, leaving Claire and her sister with
After the game, they came home and packed for Destin, to surprise
dad's cousin on his 40th birthday. A big party had been planned
for months, and with the hurricane, they had to switch the
beach house that was rented for the event (as the previous
rental was damaged)... all that aside, the family left for
the big bash and all had a great time. Claire slept through
most of the party in a back bedroom, and mom woke her for
her evening meds and a bottle. She ate very good in the evening,
and was back to sleep on the ride back from Destin to home.
day of the month and Claire slept through the night. A nice
way to begin things off!
Mom woke Claire early for meds and to get her breakfast started.
Claire drinks really well in the mornings, and it sets the
tone for the whole day. If the family is rushed, and she gets
only a few oz of food for her first meal or a late breakfast,
she eats very poorly all day. If mom gets her up early and
gets 5-7 oz in her for a real early breakfast(after her meds),
then she is so very hungry all day. Mom is the same way, a
big breakfast means big meals all day, while a skipped breakfast
(esp if she opts for half and half with a little coffee) means
an average to small lunch, but little dinner.
So, mom works on Claire's breakfast and knows that she needs
to get up early to start it early and give her enough time
to drink as many oz in a row as possible.
Since the woman never called back to confirm Claire's daycare
today, and since mom has no directions (none in the phone
book, none on the Internet), dad felt a little uneasy about
Claire going. He also asked mom if the woman had ever seen
Claire, or met her... mom said no, but still felt confident
that Claire was relatively low maintenance, compared to other
'special' kids and the woman was recommended by Claire's caregiver.
Dad told mom to just get to work and he would watch Claire
for much of the day. He had some work to do today, and would
see if the woman called, or he and mom would work something
out. Claire would be very happy to spend the day with her
daddy. This makes mom wonder what they will do on Monday too,
and she's happy dad has such a flexible job.
slept through the night. It was very nice for mom.
She woke up for meds and breakfast, and mom gave her formula
3:2 of formula to pedialyte. She drank 5oz and was in such
a great mood. Mom put her in her carseat in the family room
and Claire watched each time mom went by, until mom couldn't
take it anymore and HAD to go play with the peanut. She is
so fun. Later, Claire went to daycare with 3-8oz bottles of
shake. Mom isn't taking any chances of the little peanut running
out of food... not that she has before, but she's a whopper
these days and mom wants to keep it that way.
Friday (tomorrow), and Monday, Claire's caregiver will be
taking 'off'. She was kind enough to give mom the number of
another woman who could watch Claire. Mom called a while back
when she first got the information and spoke with the woman,
who was very nice. Mom tried calling the woman back today,
and left a message, but hadn't heard back all day to be sure
she would take Claire tomorrow, and to get directions to the
In the evening Claire finished up 27 oz, kept it all down,
and was wide awake when the first Presidential debate began.
Mom was sure Claire would show interest, afterall, this election
could change the next 100 years of American history! Mom was
sleepy tho and didn't know if she could stay up for the mudslinging.
Once the debate began, mom was wide awake and all ears, yelling
at the candidates to make points and clarify plans... and
Claire fell asleep. Perhaps she realized how precious sleep
can be around their home.
slept through the night. She was ready for breakfast and drank
3-4 oz before going back to sleep. She slept until 10am, which
allowed mom go get in a lot of work. Mom got her up and she
was ready to eat and hang out. After finishing 4 more oz,
she was off to PT and OT and then finished another 6oz and
was visited by Hospice and Music Therapy. The hospice nurse
said she sounded really good -- for Claire -- her lungs sounded
good and 'nice grumbles' in her tummy. She also weighed in
at 12lbs 11oz! A new Claire record!! Mom was so proud she
was beside herself!!
In the evening, Claire continued to eat really well, putting
down two more bottles of 8 oz, until the overflow valve kicked
in, and about 2-3 oz came back up. Her big brother, studying
for a science test, insisted mom not feed her anymore, as
she seemed more than full to him, but mom got out the pedialyte.
Claire was very fussy after throwing up, so mom gave her tylenol
and her clear liquids and a warm tub, and finally she settled
down. The two of them rocked in the rocking chair in front
of the tv while dad worked, brother studied and big sister
was already in bed. Brother, mom and Claire soon followed
and went to bed themselves.
Claire drank her 3oz and was back in bed, she slept through
the night. She must have thought that 20 oz wasn't good enough
to end the day on.
Grandma and Grandpa left early in the morning to get back
home to their 'hot' house. Evidently, the ground on the house
was 'broken' so most everything was 'hot' and would shock
them, even possibly cause a fire. Once home, they had an electrician
come out and cut some 'key' wires and then have to wait for
the utility guys to come out and turn off the power to fix
the ground. Ironically, Claire's grandparents are the only
ones we know that are waiting to have power turned OFF after
a hurricane... while everyone else waits to have power turned
on. Needless to say, they had to turn off all the power in
their home and are running on generator. Power company said
it could be as late as Oct 12 until they get put back online.
Meanwhile, Claire's aunt, who was suppose to be out of power
for another 2 weeks, has power... yeah! They got it shortly
after ordering a generator from Utah. This is all so confusing
to Claire, since she was totally unaware that she had two
tropical storms in the last few weeks... oh, a baby's life!
Claire had a great day and a nice evening too, finishing off
at around 26oz.
1am, the winds picked up and the electricity went off. That
woke mom up. She opened her window so she could hear the storm
and get some cool wind for Claire. She heard transformers
blow, but not as many as the last storm and not as many police
sirens either. Last time, she tried to keep the cool air in,
this time she just wanted to go back to sleep and not worry
about waking up hot... so the windows were cracked. The winds
kept her up for another hour, and around 2:30am, opted to
call the power company. She dilly-dallied around the house,
looking for batteries for her weather radio so she would know
if there was a tornado warning around, checking on Claire
several times and checking on the kids. They were awake, so
mom said they could come down and sleep on her floor... they
were so excited. kids. By 3am, the power was back on. Mom
turned off the tv and other lights, etc, and went back to
bed. The winds were dying down so she was back asleep soon
In the morning, the electricity was still on, so mom made
coffee for everyone and got Claire up for meds and breakfast.
The family heard from the last two members in Melbournd/Malabar
area who were fine. Mom's sister in Malabar was requesting
a generator, and while that will be very difficult to find,
mom is on a mission. Lowes, Sears, you name it, everyone is
out. Must have shipped them all down south, or west. She said
the power company said they could easily be without power
for a month. wow! It seems quite unanimous by all who weathered
out the storm, it was a very bad experience... scary and they
hope to never do it again.
Everyone had a slow morning and a late breakfast. The cable
was down until around 9 or 10am, so not tv and no Internet
early in the morning, no big deal either as it came on when
mom was ready to work. Mom is taking the day off, as the kids
are off from school today, but she's still getting some work
done, she really enjoys her job. Grandma has taken over Claire
duty with an 8oz bottle of shake. And Claire seems to be putting
car battery is dead today, it's been slowly going, and relatively
new, so Grandpa is busy trying to charge it. Claire's brother
finished his homework this morning and is playing on the computer,
and her sister is tied to the television, but only for a short
while... mom will kick her off that soon, and she will find
something else to do. It is still raining outside, so mom
is letting her have a peaceful morning. The winds are picking
up every now and then, but nothing that is scary... rather,
very nice and breezy out.
Claire did really well at PT and OT today, and mom, not having
any coffee this morning, was really feeling her lack of sleep,
and opted to take a nap when they got home. Grandma had watched
the kids while mom took Claire to therapy, and when mom got
home with Claire they switched off and Grandma watched Claire
while mom and Claire's sister took a nap, and Dad and Claire's
brother went test driving cars. Claire drank another 4oz and
was very hungry soon after. Grandma
woke mom up in time to get ready for dinner.
Tonight, the family all went out to dinner, yum. Claire drank
another 8oz bottle and mom gave her meds early and she went
right to sleep on Grandma's lap, around 8:30pm. Claire only
had 20 oz today, but mom thinks she would have had more if
they hadn't had such a hurried day.
Claire was in bed around 10pm, but back up again at 11:30,
and dad took her so mom could continue to sleep. Mom was up
briefly to give her some mylacon for gas.
is sleeping in. Mom however has been up since 5:30am, monitoring
hurricane Jeanne which made landfall at 120mph winds in the
middle of the night. Mom has several family and friends in
the Melbourne area, where the worst of the squalls seem to
be coming through and is scared for them, as the hurricane
is stronger than the last one that hit only weeks ago, and
family stayed for this one. Fortunately, no family stayed
on the barrier islands, but the family is still trying to
contact folks down there and with power out, it will be difficult
unless they have a 'corded' phone, and lines are still up.
The sun is coming up and mom is going to wake Claire for her
meds and breakfast. Grandma and Granpa are glued to the tv
watching the weather and wondering how the family is doing
also in Central Florida. The storm appears to be coming towards
Claire's home, but should be very minimal when it reaches
as just a tropical storm. Fingers crossed.
Our thoughts today are with everyone experiencing this hurricane.
The evening was filled with fun and family. Claire's uncle
brought his family over and everyone pitched in for a delicious
spaghetti dinner. Afterwards, mom made brownies with brickle
and nuts on top... served with
moose tracks frozen yogurt. yum! Claire finished her day off
with 25 oz and went right to sleep once Grandma put her in
her bassinet. She slept well all night.
The family was planning on getting remnants of what would
be Tropical Storm Jeanne (downgraded from hurricane), so mom
expected the electricity would be going out and put a bag
of ice in a cooler with some lunch meat and some ready-made
coffee (and half and half, yum!). She didn't bother with drinks
or milk, as the kids could drink juice boxes from the pantry
and do without milk for a short while.
Then she made sure Grandma and Grandpa had a flashlight, in
case they needed to get up in the night, and didn't have electricity,
and then off to bed she went... to watch the weather on tv.
Just before midnight she noticed a squall heading towards
them, and told Claire's dad that it would probably be there
in about an hour.
was gently awakened by her mom for meds and breakfast. She
had a terrific day! She went to her brother's flag football
game, and her grandma held her the whole time while she slept.
That cool crisp fresh air, and the nice breeze on her face
kept her sleeping during the entire game...she's becoming
a real football fan alright!
After the game, mom and dad went home to meet the sitter so
they could go to the FSU football game. A big time had by
all, as the second string quarterback got to show his talents
and everyone was pleased... the future is now and it looks
good for the Seminoles! Let's hope he can do as well in the
The game was wonderful, and at half-time, mom made several
phone calls to family to check the status. With hurricane
Jeanne out in the gulf, and headed towards family and friends,
she wanted everyone to know they were thinking about them
and praying for them.
After the game, mom and dad got their hurricane updates and
saw that it still hadn't turned north like it was suppose
to, so the likelyhood of them seeing rain and winds had increased,
but shouldn't be too bad (fingers crossed -- gee, we do that
a lot here!).
Claire didn't eat as well today. She only drank an oz or two
before her BIG nap at the morning flag football game, and
afterwards, when she finally woke up, sometime around 1pm,
she started back to her old drinking self! She downed over
19 oz until she finally went to sleep around 10pm.
had a banner day, drinking heavily at her daycare. Mom has
been putting extra food in the bad lately, as she doesn't
want to take any chances of Claire running out!
Claire's grandma and grandpa are up visiting for the FSU football
game, and as Hurricane Jeanne refugees. The arrived a little
later than usual, as they came up by themselves, and the decision
was a bit difficult, but they will be comfortable here, removed
from hurricane landfall and 100mph winds, as are expected
at this time.
The rest of the family has opted to stay and 'ride out' the
storm. They are a little tired of the shuffling around, and
didn't have much, if any, damage from Hurricane Frances, so
they are staying put in Melbourne. Also, some of them actually
don't get time off (health care industry, etc). Claire's aunt
(who is in the video on Sept 7th with her) and uncle do live
on a barrier island, and did opt to evacuate to Grandma's
house, closer in-land. Claire is happily oblivious to all
of this! And now she has Grandma to hold her and love her...
so she's actually fired up about the whole situations. Keeping
family in Central Florida in our prayers today and throughout
She drank 28oz today... all shake! Keep it up Baire!!
slept through the night. Mom did too.
Mom woke her up in the morning for meds and breakfast and Claire
drank 7oz of shake in about 45 minutes... then was talking up
a blue streak (whatever that means). She talks and talks, then
fusses, or maybe that's talking... and mom gives her a bottle
and she is quiet for a bit... until the bottle comes out, like
when she's finished, and she lets you know she is not pleased...
talk talk talk... mom must get that on video! Claire had her
RSV shot today and Dad picked her up for that and is taking
her to a 'walk through' on a house that he will close on tomorrow.
He said she is sleeping hard, so bringing her along won't be
a problem at all (until she wakes up and starts yappin again
Claire has had a terrific couple of days. Mom is hoping it will
keep up so she will gain some weight (mom thinks she will gain
weight too...hehehe). Claire has been keeping her food 'down'
too... no throwing up for about a week... can't wait to see
the scales tip next week! At daycare, Claire drank 12 oz, and
at home she had two 4oz bottles which she drank in probably
a 2 hour period. After the last oz (her dad was feeding her)
he took the bottle out of her mouth and said, 'Claire, you are
as fat as a tick'... and almost refused to feed her any more
as he thought she was 'going to BLOW (up)'. Of couse she would
have had another bottle if she wanted it, but dad put her on
his chest and she was just way to comfortable to ask for more
food... and they bonded.
Claire drank 27 oz of shake today.
slept through the rest of the night. Mom was happy because she
was pretty tired.
Mom had to wake Claire for her meds and breakfast and Claire
drank 5oz of shake. She finished it off when her Hospice Family
Coordinator was visiting, then she went to sleep (Claire went
to sleep, not the coord).
Mom was able to get a little work done and shoot off some emails
before packing Claire up for PT appt. Her OT appt was cancelled
today; it was cancelled on Monday too, so Claire had no OT this
week. The PT did show mom the bill for the Kid Kart they are
odering for Claire, and it was... well... it was very high.
Even higher than mom thought it might be. Hopefully, insurance
or Children's home society will foot the bill. Claire worked
on a bottle before, during and after her PT appt and finished
off 6 oz (5 of formula and 1 of unflavored pedialyte, ironically
added for flavor).
Claire fussed for most of the PT appt. Mom isn't too sure why,
but seemed better when they got home. She drank another 4oz
of shake and started pushing it out with her tongue, so mom
put her in her boppy with her mirror to look at while she waits
for her Music Therapy (MT) to come, in about 10 minutes, if
she's on time. And mom is back to work.
Mom got a call for Claire's RSV appt. Tomorrow. Claire is not
going to like that a bit.
She drank 27 oz today.
was up at 1:30am. Probably a little earlier because she went
to bed a little earlier. She drank 4oz of shake and went back
to bed. When she woke up , she had 5 oz of shake. She had a
nice day at daycare, drinking 10 oz there and once back home,
drinking another 12oz in the evening. Just when mom thought
she was full, Claire started fussing. Mom thought to try the
easiest thing first, that would be feeding her, and she would
drink... then fuss again... so off with another bottle. Mom
was very happy to see her eat so much... and glad that she was
keeping it all down. Probably has something to do with getting
that new bottle of meds out... Claire seems to be back to her
old self. No fevers, no seizures... everyone is happy!
Claire went to bed at 10pm, and was up again at 11:30pm... crying...
and loud... and mad! Mom made her a bottle, given her history
of eating today, but she didn't want it. She seemed congested,
but that shouldn't make her cry, so mom gave her some mylacon.
After a few minutes, seeing it didn't make a difference in her
cry, mom gave her some nose drops, then a decongestant. Eventually,
Claire calmed down, mom tried to feed her, but Claire was just
wiped out, so mom put her back in her bassinet. She made a noise
here and there, but soon went to sleep until morning. Claire
had a whopping 27 oz of shake for the day (maybe that is what
was bothering her).
hasn't seemed to have any seizures this morning, so mom is grateful
for that. Mom was up at 3:30am, checking on Claire, and Claire
just let out a cry out of no where. Mom fixed her a bottle and
she drank 3 oz of shake. Claire woke again at 7am for meds and
another 5oz of shake, then drank a couple oz of formula/pedialyte.
She fell asleep, while mom got ready for work, then mom had
to wake her for an overdue bath. After the bath, mom put Claire
in the swing, as dad was going to take her to her PT appt today,
and Claire fell asleep. Mom commented that he was going to have
a rough time babysitting Claire until her appt (teasingly).
Claire's diaper was wet, so her BMs may be back to normal. Mom
gave her banana shakes last night and this morning, hoping to
'firm' her up some... and Claire ate them very well... bananas
are her favorite!
Claire drank 25 oz today... met her goals... good baby!
seizures continued and Claire had one around 12:30am this
Once Claire was asleep, she slept through the night, that
was more than mom can say about herself, as she was up worrying
about her peanut. After the seizures during the day, mom wasn't
too sure what to expect.
From what mom could see, she had another at 10:30am and then
11:30am. Claire had gotten her meds a little late today, and
mom noticed that she was nearing the end of the med bottle,
and in the past, Claire had gotten seizures towards the end
of the bottle, so mom pulled out the new bottle and started
dosing at her afternoon med. Hopefully, after a few doses,
she will be back to her old self.
The seizures could explain Claire's sleeping a lot and not
wanting to eat. It's kind of a chicken-egg thing... is she
sleeping because of the seizures (the tend to take alot out
of her) or is she having seizures because she's sleeping all
the time and not eating.
Claire had another seizure around 3:30pm. Mom was sure that
Claire's levels were likely not back to normal by then, and
was hoping it was her last seizure.
Claire's Aunt, Uncle and Cousin came over in the evening to
have dinner. It was so nice having them over... a good relaxing
day for all of us. Claire had to very very full diapers while
they visited, and drank about 5oz of shake, and then some
as her uncle fed her most of the time he was visiting... they
In the evening, she had another loaded diaper, mom was wondering
where it was all coming from! It never really came out as
diarrhea, but it was very loose, and that is good for Claire,
only with so much over such a little time, by bedtime, her
bunnies were quite red, and she was irritated over the whole
situation. Dad tried feeding her, but she just wanted to cuddle
with him... after she settled down, mom tried putting her
to bed, but she was fussy... mom put a bottle in her mouth
to feed her, she took a couple gulps and passed out from exhaustion...
so mom put her to bed around 10:30pm. She ate pretty well
today, probably close to 20oz for the day.
the evening, Claire had a seizure. Mom was bewildered, but knew
that her meds dosage hadn't been increased in a while... and
wondered if that had anything to do with it. Also, Claire had
not been eating well... maybe 10 oz today. Mom thought she would
really work on Claire's eating and see if it would help her
out... and keep the thinking cap on for any other changes in
Claire... aside from the sweaty night before.
midnight, dad called the utilities again to complain. It had
been off about 4 1/2 hours by then. Mom was starting to wonder
about the food in the fridge... but the least of her concerns
as she didn't put the oxygen on Claire, she would hold out until
Claire really needed it... and she was snoozin just fine on
The utilities company called back within about 5 minutes to
ask if the power had been restored (from his 7:30pm call) and
dad said no. Then they heard trucks and eventually the power
came back on sometime around 12:30am and after another call
from the utility company, who would call later in the morning
twice more to see if the power had been restored. They tell
you not to call them, and then they seem to ignore you when
you do, and so it seems like after the first hour, you just
gotta bug those guys... like they forgot there was no power.
That seems harsh, but the storm was long gone this evening,
and when the second call went out, they reacted quickly... if
dad hadn't called that second time, how much longer would it
have been? If he had called sooner (and not fell asleep like
everyone else in the house) would they have fixed it sooner?
And the family would have had ac? Claire did really well through
it all, tho she was a little sweat box, but mom didn't want
to wake her with a cold washcloth. Once the lights go out, she's
got a pretty good understanding that it's time to sleep...tho
on many days, she sleeps well when the lights are on too. She's
such a good baby! Aside from a little power outage (fortunately
in the evening when it is cooler outside and kids don't need
to be entertained) and a little cable outage, the family weathered
the storm just GRAND. Kids don't understand why they can't dig
into the pudding packs or the pop tarts mom bought 'for the
hurricane'... but with two more out there, mom is holding out.
She tells them it's 'for when the power goes out'... now she
adds, 'for a long time'... but told them when the last storm
passes, they will get those 'goodies' in their lunches. Hopefully
this will change them from wishing for a storm (so they can
have the snacks) to wishing for the storms to be all gone. Mom
doesn't typically buy snacks with high sugar aside from the
occasional Nutter Butter cookies, so these are a real treat.
Mom woke Claire in the morning for meds, breakfast and off to
daycare. She drank 6oz of shake before leaving home and was
alert and yelling at her mom to play with her everytime mom
walked by her trying to get ready for work. Claire is getting
to be more vocal these days... her caregiver is going to have
a fun day with her today.
Claire has been fever free since yesterday morning.
almost 3am, and Ivan is sending the family a little present
in the form of a squall. It woke mom up because of the thunder
off in the distance. Amazing that mom could hear that with the
oxgen concentrator literally only a couple feet from her head,
but it was enough to make her turn on the tv, and sure enough
there was one coming in. She woke up dad, who was asleep on
the couch with a window open to hear the storm (he knew the
concentrator was just too loud to hear trees branches falling,
etc). There are no tornado warnings right now on the radio,
tho that band looks really mean, and of course, mom can't sleep...
there's still lightening and thunder off in the distance. If
the electricity stays on and family stays awake, updates will
continue. Mom will temporarily turn off the oxygen concentrator
so they will be able to hear the storm from bed and mom will
listen for Claire. Mom is opting to shut down the puters until
the squall passes.
Soon after, a tornado warning is issued until the squall passes,
and around 4am, it is gone and mom finally goes back to sleep...
but up again at 8am as the kids are up looking for a video,
the cable is out. That puts mom's Internet connection out too,
but mom is happy that is all they lost, the electricity is on,
and there is hardly a branch on the ground outside. She's amazed
too, as she heard transformers blowing all night, branches cracking
and police car sirens off and on. Claire's family is very blessed.
Another warning is issued for a few counties north, everyone
is hoping the worst is over for them, but knows continued warnings
will be issued for much of the day. Claire is waking up hungry...
better get that bottle ready.
Claire woke up with a fever. It was 101 under her arm, which
is 102. Mom gave her a small dose of Tylenol and Claire seemed
happy and drank about 4oz of shake before going back to sleep.
Her temp was down within about 20 minutes to 100 (99 under arm).
Claire was scheduled for her RSV shot today, but mom had to
cancel and the dr office will call to reschedule.
The winds outside are still gusting and the police sirens going
off every now and then.
Claire's hospice coordinator called to check up on the family.
Mom told her everything was fine, and mentioned Claire's fever,
a likely result of her shots yesterday and she agreed, but said
to keep an eye on it and call the hospice nurse if the fever
persisted. Also got a call from dad's brother in south FL checking
in on us. His wife is expecting a baby any moment, so the family
is patiently awaiting the news. His 4th girl, her name will
be Emily... a nice 'old' name like Claire! Hope they don't end
up calling her Jeanne (the name of the hurricane out in the
Carribean now). Mom called her brother and they are doing well
too. They have electricity and all agreed they'd dodged a bullet
last night... a few hundred miles to the east and Claire's family
would be in deep distress. A lot to be said for prayers... Thanks
Mom took a nap around 11am until about 3pm. Guess she was a
little tired. Dad took over Claire duty. He tried feeding her,
but she didn't eat the whole time mom was sleeping. During mom's
nap (if that's what you call that), Claire's hopsice nurse came
by and said her lungs sounded better than the last time she
was there, so mom's taking that as, 'they sound good', and thinking
that the fevers are still from the shots. At 4:20pm, mom took
Claire's temp again and she was 98.6 under her arm, so add a
degree and get closer to 99.6. She drank really well for mom,
about 6oz of ped/formula. She's alert and happy... mom's glad
for that as she wondered if the change in pressure from the
hurricane would affect her breathing, but she seems to have
done fine through it all.
Dad's heard stories that there are a lot of people without electricity
in town. When mom got up, the cable was out again, but no biggie...
the journal shall go on... and just get uploaded to the web,
whenever it comes back. Mom was hoping to answer some mail and
get some work done, but perhaps God thinks she needs a day of
rest. Whew, looks like a long journal day. Too much time on
our hands. Mom and Claire's brother listened to the radio and
ate the last of Grandma's mangos for a pre-dinner snack in the
The neighborhood was without power for most of the day, mom
felt lucky they still had power.
Well of all the silliness!! At 7:30pm, our power went out. Around
8pm, dad called the utilites to let them know and tell them
of their 'special needs' child, who would be on O2 in the evening,
but also mentioned she had a tank or two. Guess that cancelled
out having a speical needs child. The kids went to bed in Claire's
room so they would stay a little cooler as the house stayed
cool until about 11:30pm. Claire slept on a towel at the foot
of mom and dad's bed, as her bassinet tends to be warmer (with
the sides). Mom sponged her down with a wet washcloth to keep
her cool. She remained fairly cool all evening, if she had gotten
too warm, mom would have put more water on her and taken off
her outfit. If she overheated, they would have gone to Claire's
At 11:30, mom woke up... it was very warm, so she started opening
windows and a nice cool breeze came through.. it was humid outside,
but the coolness made up for it... probably could have opened
the windows earlier, but it was warmer outside then than it
was inside, and everyone fell asleep around 8:30pm. Claire was
doing well with the nice breeze coming in.
slept through the night, but was up at 5am. Mom fixed her
a bottle as mom was pretty much awake too. Claire drank 3oz,
and went back to sleep until her dr appt later in the morning.
Claire weighed in at 12lbs even! Mom was proud. She was 25
1/5 inches and she got two shots. Tomorrow she is scheduled
for her RSV shot.. the first of the season (she will get one
every month -- RSV is like a 'baby flu').
After the dr appt, mom went by work to show off Claire, and
check on a few projects, then off to home to get Claire a
new bottle, as she finished her 5oz bottle of shake. Mom noted
that the public schools were going to be out tomorrow, so
she knew the kids would be off tomorrow too. This didn't surprise
her any, and she made sure the kids had enough reading and
work to keep them occupied by calling dad to see that they
had all the books they needed. Claire's sis has her ABC bag
and a 3-d spider to make, her brother has a spelling unit
to complete along with any other homework he was assigned
Claire went to OT and PT afterwards, 45 minutes each, and
Claire did some nice things. She held onto a toy for a short
time with her hands out in front of her, and really examined
it... she stayed focused on the toy, looking right at it...
no telling what she as thinking... perhaps, 'Why is this thing
in my hand'... or maybe' Whoah! this totally rocks!'. Either
way, she wrapped her little thumb and fingers around the toy...
both hands, and was holding it by herself. The PT was holding
her arms up so she could see it. Mom thought that was very
cool. Claire also held her head up by herself for a little
while while the vibrating bug had his leg on her face... she
really liked him... he had nice big eyes that she liked to
follow. She only wished she could have gotten him in her mouth,
bet that nice vibration would feel nice on those elusive teeth.
It was a good way for the PT to get Claire to bring her head
down when she was sitting up.
After OT, mom brought Claire back home she finished her 5
oz bottle and had her meds. Her brother and sis were already
home as dad picked them up early, to avoid the nasty situation
of traffic late in the day. Evidently, our little town has
been chosen as an evaculation city, so there are many new
faces in town... and that's enough for dad to get the kids
early. Also, he wasn't too sure what the weather would bring
later in the evening... and no use being out in the storms
on the additionally crowded streets.
It was so nice having everyone home, especially for MT (Music
Therapy). Claire started a new bottle drinking about 2 oz
of ped/formula mixed. Claire and her sis realy enjoyed all
the songs. Sis even sang along for a few songs, mom wished
she would be able to film it all, but knew once the camera
came out, the singing would stop, so mom just enjoyed it all.
Claire took a nap in the evening and woke up with a cry. She
had a fever of about 100, and mom looked over the shot information
to find out if fever was accompanied with the immunizations.
Of the two shots she had, one had 1 of 4 children having fever,
the other was 1 in 10 children. So mom gave her Tylenol and
meds, and she went to sleep shortly afterwards, she wasn't
Word at the last minute is that mom is off tomorrow... along
with the kids... well, it is certainly more convenient that
slept through the night. Mom woke her in the morning and gave
her meds and she drank 5oz of shake. She went to sleep for most
of the day and went to daycare late today. At daycare, she woke
up and drank 8 more oz of shake, then 2oz of applesauce with
some barley in it. She finished off 2 more oz at home and then
2 more oz of shake. That's 19 oz by 6pm.
For now, the family's home is out of the 'cone' for hurricane
Ivan. They keep praying they will stay out of it, as it is now
projected to hit Mobile, AL.
Looks like they are far enough away that they will stay at home.
The weather calls for only tropical storm winds for Claire,
so that seems like a pretty good compromise (understatement
of the year).
was up again at midnight. Fortunately for her mom that her dad
was up and came in to get her. Mom pointed out the juice that
was still fresh, and after hearing Claire cry for a minute or
so, went out with some Mylacon for Claire, in case she developed
gas, and gave her a dose.
By 2am, mom noticed Dad had put Claire back to bed with her
cannula on, and gone to bed himself, and Claire started fussing...
so mom picked her up and fed her about 3oz of juice/ped and
she went back to bed and back to sleep until morning... mom
however, had a lot on her mind with Ivan, so she turned on tv,
the path was still the same, heading WNW, not turning yet towards
the Florida coast but still steering towards Texas. Wondering
how much preparation she needed to do, and when she would get
it all done, since she needed to go to work as usual in the
morning. She finally dosed off sometime between 3am and 3:30am.
Up again for work, dad got the kids off to school and mom eventually
dragged herself out of bed. Dad said he would keep Claire home,
since she had a PT appt and mom would be running late already.
Mom also wanted dad to go to the appt and get used to going,
as he would be taking Claire on some days to her appts, also,
a seating specialist was going to meet us at the PT appt today
to talk about something for Claire, to keep her upright and
help support her back, which is showing signs of scoliosis.
Mom went to work, then to the PT appt, where she met dad, Claire,
PT, PT intern and the seating specialist. The appt was very
productive and it was suggested that Claire would benefit immediately
from using a Kid Cart. It adjusts in many ways, and can even
be used as a stroller. Mom liked the idea of Claire sitting
at the dinner table with them and having a tray of her own for
toys and hopefully one day for food. Mom is hoping Claire will
learn to pick up food and feed herself, and this seating would
put Claire in a position to learn, esp with a tray. It is all
so very exciting! Mom spent a lot of time talking with the specialist
and the PT, and learn a lot, but certain there is so much more
to learn. The specialist said that when they get the cart, they
will be able to add foam and mold it more for Claire's little
body and special needs. Let's hope everything goes as smoothly
as planned. Mom has read many times on the Trisomy boards how
difficult these carts are to get for kids... Claire truly needs
one if she is going to participate with her family and learn
to do things, not to mention, it will help with her posture
and her breathing. Claire finished her 5oz of ped/formula before
her visit with her PT. She blew bubbles for her and did the
'look everyone, I have a hand' motions for her too. Claire also
stroked her hair a few times.
Mom put her on blowby oxygen at night, as she seems to be doing
well with her breathing and cold.
slept through the night. So did mom, but waking up very tired
and needing to give Claire her meds and breakfast. Perhaps
she will get a nap today. Everyone lounged around today, not
feeling much like packing or preparing anymore for Ivan, and
not doing much else until after church. Mom took Claire's
sibs to church as dad stayed home with Claire. She slept the
whole time, as she drank 4oz of shake this morning and did
her smiles with tongue-pushing-milk game. There was an ice
cream social for altar servers, so the kids enjoyed ice cream
after church (mom had chocolate with chocolate and caramel
syrup and whipped cream). Mom also got some coffee, it was
very hot, so she put some of her chocolate ice cream in it...
cooled it down and was yummy. (Hoping no one noticed).
Dad waited until they got home before running up to get some
plywood. That will be his project for the day, getting the
sheets ready for 'boarding' before the family leaves.
Hurricane Ivan, hitting the Cayman Islands today, appears
to continue on its westerly coarse, only just now one news
person said it was starting to go more northerly, but mom
is optimistic it will continue to go west, and perhaps the
plywood won't be needed, or the packing, tho she may do that
today and skip the nap.
Claire needs to be awakened for meds and food.
Claire drank in the evening pretty well, tho not as much as
she needs. Mom switched her to more fluids, as her tummy seems
to be getting a bit larger these days, and BMs are minimal.
Mom played with Claire in the evening after the kids had gone
to bed. Claire was holding her right hand in the air, looking
it over and following it as she moved from side to side in
front of her face. It was almost as if she thought, 'no one
has checked my tracking lately, so I'll just do it myself',
and she continued to move her hand, in the air, back and forth
and follow it. Mom thought it was very neat.
Claire had more shake, then polished off 5oz of pedialyte/formula
in the evening. Mom fixed her some ped/juice, but she drank
only an oz before going to bed around 10:30.
is 18 months today.
She slept through the night and mom had a heckofa time getting
her to eat today. She just wants to sleep, and with all the
preparations for Ivan going on, mom rationalized that she needs
the sleep. Claire did drink about 6oz of shake by 2pm, tho most
of the drinking was in her sleep.
Mom has hit the red cross site and soon FEMA to be sure her
list is all-encompassing, then she will start some shopping
for necessities for hurricane survival kits, etc. There are
three openings that she and dad determined should be boarded
up. The windows, tho casements, are just way too big to board
up... there would be seams in the plywood that the wind would
just knock through, so they are going to take chances with those
windows. They are fairly new and supposedly beveled for extra
strength... they also are suppose to withstand very high hurricane
force winds. Guess they will get their chance this week to prove
they are worth the cost. Once plans are in place, mom and dad
will decide which day to evacuate, as evacuation seems inevitable
at this time.
Mom asked Claire's brother what he wanted to bring... he had
a long list so she asked him to write it down. Mom asked Claire's
sister and she came down with 4 Barbie dolls. Mom didn't question
it, and just said, "okay, is that their favorite outfits'
and got a confident, 'yes', and left it at that. Mom will pack
a favorite blanket of sis's too.
Even if the family doesn't go, it will be good to know they
can at the last second. Plan B's are always a nice comfort 'blanket'.
Claire has 2-O2 tanks for when power goes out and mom just refilled
her prescription for meds this week. Once mom stocks up again
on baby food, etc, she will be cleared for take-off (as Grandpa
Mom and Claire's brother watched the September 11th videos showing
on tv. It is amazing how it affects you all over again, like
maybe they just forgot how really bad it was... mom teared up
and could hardly talk... it was just horrible for everyone.
Prayers go out for those people... the victims and the survivors
of this awful tragedy.
Claire caught her second (or perhaps first) wind in the evening
and was ready to play. She drank, then smiled and hung out playing
with mom, then drank more... until finally she was holding the
shake in her mouth and pushing it back out with her tongue and
grinning at mom. After a few minutes, mom would feed her again
and she would eat more until she got bored with eating and started
pushing out the food again.
She had meds and a bath, then more shake and off to bed. In
the evening, she probably totaled about 12-14 more oz, totally
only close to 20oz for the day. Mom noticed when she adds pedialyte
to the shake, Claire drinks more, so she's going to try that
Hurricane Ivan has become a low category 5 (catastrophic) and
seems to be still heading west. That could be good for Claire
and her family, as they hope it continues away from them. It
is expected to turn north, then northeast, but if it turns really
late, it could go way west of them. Also, no one is saying that
the storm will be a cat 5 when it hits, and they tend to lighten
up when they hit the 'flats' by St. Marks, Florida... so the
family is hoping they won't have to evacuate. (Finger crossed
and big lotta prayers!)