|
Claire's
Journal -- 28th Month |
July
10
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Claire
slept well last night and was up around 5am. She drank 4oz
and headed back to bed, not caring about any wind or rain
outside her bedroom window. Mom will have to wake her to feed
her later today, as the little peanut really loves her new
crib.
Mom received an email this morning from a friend she'd been
corresponding with, a mom with a T18 child. Her baby, Mattie,
passed away this morning at 5am. sad. Please keep this family
in your prayers. Mattie was also full T18 and nearly 8 months
old.
The cable is out this morning, so mom is on dialup (after
mom answers all her mail and updates Claire's journal, then
she'll tell dad - hehehe). Actually, dad is too good for dialup
- hehehe. The cable guys know that its out, so it will be
a matter of time.
Some say the storm has jumped a little to the east (that would
be towards Claire's house) but likely to hit to the west -
the original forecast. Fingers crossed... at a category 4
hurricane, Dennis is a really bad storm and mom would like
it to just turn around and go back into the Atlantic into
some colder water. A few years ago, that's what all hurricanes
did - just headed up the east coast and off to the cold waters
of the Atlantic, and everyone was thankful!
BTW, if you are trying to reach the family by phone and can't,
try calling dad's cell phone.
Mom better go get baby Claire up for some food... she should
be pretty hungry about now. Mom also needs to get the crib
bumpers up for Claire's crib, as every now and then a pudgy
little "Claire leg" comes through the rails and
Princess Claire isn't too pleased when that happens.
|
July
9
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Claire
slept well last night and woke up to the celebration of her
sister's birthday.
She ate about 4oz as mom held her much of the morning and
they played, and then had more bananas and off to her nap.
The weather has been nice all day up until about 2pm when
a squall hit from Hurricane Dennis. The hurricane is expected
to hit the coast tomorrow, so the weather should slowly deteriorate
before then, but mom thinks it is going much more to the west
than what is predicted... maybe just wishful thinking too.
Dad is tearing up one of the walls in the kitchen and trying
to 'save' the pine panelling which is beautiful. Since cabinets
will soon line the wall, the panelling will be safer taken
down and stored for another room at a later date.
|
July
8
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Claire
was up at 5am, hungry. Mom fed her and layed back down just
long enough to get a little shut-eye before the alarm went
off. Mom got Claire ready for daycare and took her in. Once
again, the ladies were so excited when they saw Claire and
today mom showed them some of Claire's exercises to strengthen
her legs and help her with her sitting.
Mom was off to work shortly afterwards and left only briefly
at lunch to do a few errands and grab lunch. After work, mom
went to get Claire and had to make three trips to the car,
that last one carrying Claire. The first trip was with the
boppy and the bumbo seats, the second was the kimba chair
(only the chair would fit, so mom had to leave the base).
Claire loves it at her new daycare. They are trying different
things with her constantly and in the afternoon many of the
'crawlers' have left, so they take her over to that room (under
1 year and mobile) and the ladies over there love having her.
When mom went to get her, she was in the crawler room and
wrapped up in a blanket with her little sweater on. Evidently,
she was cold, and mom was a little surprised as Claire doesn't
usually get cold, she is usally sweating.
Dad had Claire's sibs all day as he ran errands and got work
done, once they arrived home, everyone relaxed a bit before
ordering takeout for dinner... a perfect Friday night meal.
Claire had her dinner and was in bed by 9:30 after her meds.
The hurricane in the gulf is suppose to hit the coast within
200 miles of Claire's house, but it is still a few days away.
|
July
7
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Claire
was up about 3am and drank about 3-4 oz of shake, then back
to bed and back to sleep.
She was up early after her mom spent most of the morning scurring
around and getting ready for Claire's big day at her new daycare.
Mom dropped her off and handed in her paperwork and fees,
and went over some of Claire's routine with one of the teachers.
Claire seemed to fit in and be happy and mom, of course, took
a few pix and got off to work.
She had a terrific day at daycare and mom is very pleased
with the attention Claire gets.
Claire had a good night, ate and went to bed at a reasonable
time. |
July
6
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Claire
had her mommy all day, they went to physical therapy and then
occupational therapy. Claire did very well and her therapists
both thought she was making great improvements, like trying
to do situps from an incline position. Neat. |
July
5
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The
family spent much of the day traveling back home from Grandma's
house. It was an exhaustingly long weekend full of fun! In
the evening, everyone took it easy. Claire was happy to be
home and in her own big bed/crib. |
July
4
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Happy
4th of July everyone!
The family was up fairly early to get to the beach early and
avoid the crowds and the heat. Claire's uncle showed up with
some fishing poles so grandpa fished, mom and the kids worked
on a sandcastle, but in the end decided on an actual-size
sea turtle, he was really cute. Claire spent her time at the
beach in her favorite place, Grandma's arms under a big beach
umbrella. Everyone had a good time and after a couple hours
when home and went swimming. They were in the pool until after
2pm when dad came home from visiting friends down south. Mom's
hands were shriveled by that time anyway. Claire's uncle came
to get Claire's cousins and take them back home. The had a
lot of fun and were sad they wouldn't see the fireworks with
everyone, but knew they needed to get on the road soon.
In the evening, the family went to Claire's uncle's home (who
lives by the beach) and everyone gathered for a celebration
of Independence, and a celebration of Claire's sister's birthday
(next week). Mom made a giant chocolate chip cookie for her
birthday cake, and Claire's aunts all brought desserts while
her aunt and uncle bought very large subs for dinner. Later
in the evening everyone climbed onto the roof (flat roof with
rails) to watch all the fireworks around in the different
cities along the river. Always a good time! Claire was awake
through it all, but downstairs with daddy watching the Red
Sox play on tv. They were happy there, so mom went upstairs
with everyone else.
The family got home late and went to bed expecting to leave
fairly early in the morning to get back home. |
July
3
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Claire
family was up early for church. She was very good in church
and at home she ate and took a nap. Meanwhile, the cousins
and sibs spent time swimming in the pool and having a fun
time bonding with each other. |
July
1
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Claire's
mom and dad's anniversary(16th) is today, but they likely
won't get to celebrate it as they are packing and going to
grandma's house for the weekend. On the way, they will stop
and pick up daddy's neices and have them all weekend. Mom
and dad will plan something in the coming weeks... and maybe
next year plan a little better. The family left after work
and arrived fairly late in the evening. Mom changed Claire's
diaper and got her to bed while dad set up her play pen.
|
June
30
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Claire
had a good night and slept through.
Mom heard her in her crib around 7am, talking (in her own
language of course -- mom think's it's Japanese)... and playing.
When mom went to get her, she was in a position perpendicular
to the one mom left her in last night. Better get the bumper
pads out for the crib!.. cause little Claire is bouncin' around
in there.
Mom got the kids ready and off to school. Dad had an early
morning closing, business seems good these days (fingers crossed
it holds up) and dad is busy busy busy.
Tomorrow is Claire's last day at her daycare. It will be sad,
but it will be for the best, as her caregiver could use the
break, and while Claire isn't exactly a handful, she has her
moments.
|
June
29
16lbs, 2oz
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Claire
was up with her daddy in the middle of the night. He was up
anyway, and is great about getting her when she cries (if
he's still up).
Mom got a pretty good night's sleep. Up in the morning to
get Claire to her 9am fitting. Mom took Dad's car so everything
would fit. She was taking Claire's kimba stroller so Claire
could be fitted one last time, and picking up the base that
the seating will fit into also, so Claire can sit closer to
the dinner table with everyone. It will be nice for her to
sit with the family at dinner time (typically, she's in her
stroller or swing sitting with the family, near the table,
but not at the table unless mom is holding her). She also
got a seatbelt for her stroller, so when she's reclined, she
shouldn't need the vest and will be cooler this summer (the
vest is for positioning and it can be very hot). The guys
at the wheelchair place also worked on better head support,
but in the end, the one that the chair came with seemed to
work best for Claire afterall.
After the fitting, mom and Claire rushed over to her therapy.
She had physical therapy and actually did a sit up with very
very little help... after she did it, she gave her therapist
the biggest grin as any pixie would do, and mom and the therapist
told Claire she'd been holding out on them!
Then she went to her occupational therapy, and the therapist
mentioned that brushing her teeth and doing stuff like that
in Claire's mouth before feeding her could help her eat better.
So mom will be trying that (tho not using toothpaste as everyone
knows toothpaste before eating makes everything taste yucky).
After the therapies, mom and Claire had just enough time to
eat lunch, get meds and get mom a light jacket as the offices
were very cold and outside was very humid. Then off to her
well-baby check up!
At
her checkup, Claire weighed in at a whopping 16lbs, 2oz!!
Mom was proud and told Claire's ped that she'd been adding
olive oil, he thought that was a good idea and mentioned he
was taking fish oil himself. Claire had a really good visit,
he was happy with what he saw. Mom asked him to look in Claire's
ears to see if they were more opened, and he did. He said
he could actually see down her canal now, but still couldn't
see the ear drum... but progress is progress, and perhaps
in time, she will have all her hearing. Mom agreed with him
when he said the hearing tests not only test hearing, but
are based on the brain too, and if her brain isn't where it
should be, the results could be skewed on that alone. Perhaps
why mom never really felt the tests were conclusive.
In the evening, mom was pretty tired and got in a 10 minute
nap. The kids were bathed, and it was pizza night, and dad
brought home dinner. Mom insisted on having something besides
pizza, as she's been having it every other night this week...
and more pizza planned for a luncheon at work tomorrow. He
brought her some stuffed shells (yum!). Claire finished a
bottle of pedialyte that she'd been working on throughout
the day, and then 3oz of shake and meds and off to bed. She
was a tired little baire and went right to bed.
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June
28
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Claire
had a good night and slept through.
Mom woke Claire up early this morning. Claire has an interview
with a church daycare. Since she is two, but small, they would
consider putting her in the one-year room, but they are mobile
and she isn't, so she could be put in a room with even smaller
babies. The jury is out on that one - basically because of
lack of openings for new kids. The woman mom really wanted
to meet wasn't in, so maybe she will hear from her today and
they can see if the daycare will meet Claire's needs, and
Claire will meet theirs. All the women were very sweet and
the family enjoyed the visit. Life is good.
After the interview mom took the kids to camp, Claire to daycare
and then off to work.
Claire had a good day at daycare and was called back for a
second interview in the afternoon. Mom was excited for Claire.
Dad met them and they met with the director and she said she
really wanted to make this work for Claire. They talked at
length about Claire's needs. She would be going to therapy
and of course need special seating. The director mentioned
they could do some of the simple therapies that mom was already
doing at home and mom would teach them those. It is all so
sudden, but exciting for Claire. They were given the forms
and a list of things to bring for Claire's first day next
week. Mom got Claire back to daycare and herself back to work...
and she's tickled that things worked out so well... OH the
power of prayer!! :o) |
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June
27
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Claire
had a terrific night and slept straight through in her crib
in her own room. Mom is so proud, Claire's getting to be such
a big girl! Mom woke her this morning and Claire's big brother
played with her for a while (when he should have been getting
ready for camp) and got many smiles from Claire this morning.
Claire threw up twice today at daycare and her caregiver looked
a bit exhausted. After filling mom in on Claire's day, she
mentioned that she wasn't going to be watching kids for much
longer. Mom asked her about a specific day and she didn't
want to say, so mom said it for her, asap. She's been watching
Claire for 2 years, and Claire is her 'oldest' customer, but
mom is sure Claire isn't the reason she is moving on with
her life. Her fiance has two adorable, but small, children,
and in the evening she often cares for them, so once her daycare
kids leave, she has other kids to attend to, and it seems
to be wearing on her. She is a very lovely woman and mom and
Claire will both miss her very much, but will intend to keep
in touch with her. One more chapter in Claire's life about
to close in order to start a new one.
Mom spoke with the Children's Home Society counselor who has
quickly become a good friend of the family and amazingly she
told mom about a church very close to Claire's home who may
have an opening and the director has many many years experience
with 'special needs' kids in the county school system. Mom
has an appt tomorrow to go look over the new place and really
hope it will fill the new void and will be just what God ordered
for Claire. It's a wonder how things change and other hope
forms soon afterwards. Mom will be saying many prayers that
it will all work out for Claire and the rest of the family
-- it is so sudden, and hopefully will somehow be for the
best, God knows what is best for Claire and all we can do
is have faith.
Claire had a good night of eating and then off to bed. She
was letting out a few cries randomly, but not enough that
she would be fussing each time mom went into her room (Claire
would be sleeping), so mom kept an ear open and eventually
Claire settled down. Everyone was in bed at a reasonable time
tonight. |
June
26
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Claire
was up around 3am, and fussing... first softly, then louder
until mom was certain she wanted more than just companionship...
mom first went in, covered her up and patted her back... and
Claire settled down until mom got back to bed, then started
fussing again, so mom got a bottle ready and offered it to
Claire thinking she would have her usual two large guzzles
and have no more, but mom was wrong this time. The little
peanut was hungry and drank all 4oz in under 10 minutes (approx)
and then mom put her back to bed and she was most content
to sleep until morning. She seems to be well adjusted to being
in her crib.
Dad was up with Claire in the morning and gave her a bottle...
after guzzling the first 4oz (dad wasn't used to seeing that
happen and was most impressed) he offered her the rest of
the 8oz and finished all but one oz of that and then went
to sleep again... that drinking and full tummy can waire a
baire out!
Company came by in the morning, first dad's friend and his
girlfriend, then another friend of dad's with his wife who
hadn't met Claire, and barely remembered Claire's brother
and sister. It was a fun reunion!
Afterwards, the family was off to Claire's uncle's pool party.
Her uncle dipped her toes in the pool and she seemed to like
it, or at least she didn't cry about it. He put a little cool
water on her face too. Claire has a bit of a heat rash on
her face again (tis the season). Claire's aunt held her much
of the time, and a friend held her briefly too, mom got a
little break and bragged on all that Claire has been doing
lately, like working on her standing, and graduating from
hospice.
Later in the evening, the family hung out for a bit with Claire's
uncle, aunt and cousin and ordered bbq, but with it being
so bright out so late, the time went quickly and the family
had to rush home to get the kids to bed (in the daylight,
but close to 9pm).
Claire fell asleep after her meds (she'd been eating much
at her uncle's home all evening) she went right to her crib
soon after they were home... before 10pm. |
June
25
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Claire's
mom was busy this morning.
After her cup of coffee, she was determined to clean Claire's
room and get the crib up today. After only a few hours, the
room was ready, furniture moved around and the crib put together.
It was the same crib that Claire's brother and sister had,
and the same one her cousins had used too. It matches the
other furniture really well, and mom and dad decided a new
matress was in order for Claire. Claire still fit, tho barely,
in her bassinet, but she should have probably been moved to
the crib months ago, but it wasn't something that could be
done too quickly as mom and dad disagreed on what to do with
the furniture in the room already. Until that was resolved,
mom wasn't ready to rock that boat... but finally the day
has come that all of Claire's belonging can go to one room..
once again... like when she was first born and the bassinet
was in her room, the nursery.
It is so nice to have an organized room and everything in
its place, but of course, a few things are still out of place.
Once the room was together, sheets on the crib and a shirt
that mom had worn was layed down (gotta get that mom's room
smell in there), mom went upstairs and locked herself in Claire's
sister's room with a big black yard bag. It was time for toys
to go and mom knew just who to give them to, Claire's caregiver
has a soon-to-be step-daughter who is younger than Claire's
sister and would love to have many of the toys. The bag didn't
quite get full before it was time for dinner and giving up
on the room temporarily, but mom will be back to finish the
job soon.
Claire had a nice evening, full of smiles and just an all-round
great kid. |
June
23
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Claire
was up around 3am and looking for food. She guzzled her shake
for about 10 seconds, then pushed it away and didn't want
any more, so mom put her back to bed... she was restless for
a while, but eventually went back to sleep, which was more
than mom could say. She put the bottle back, checked on the
kids, and still layed in bed unable to sleep, but eventually
dozed off.
In the morning, mom just wanted sleep, but was up and getting
kids ready, Claire ready and herself ready for work. Eventually,
everyone was out the door and Claire was sent in with a jar
of peaches/bananas and another jar of sweetpotatoes/chicken
(like she had last night). Her caregiver was very happy for
Claire to have a variety of food.
Mom has mixed feelings... tho Claire is two, she's only 15lbs...
so does mom feed her like a 2yo, or feed her like a 15lb year
old... what is going on inside that little peanut, and how
would mom know if she is giving her too 'advance' of a food,
or not advanced enough... so mom always thought it would be
good to err on the side of not advanced, so that is pretty
much why Claire hasn't had too much variety (and the fact
that bananas and cereal are so hi-cal, and mom wanted whatever
Claire ate to be hi-cal). |
June
22
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Claire
had a rough night, dad was up with her and mom fixed a bottle
an gave it to her, she drank about an oz and then went back
to sleep. She has a big swollen gum that a tooth is just so
ready to come through, but hasn't... as if the gum is just
covering a tooth that has already 'come in'. Poor little thing.
She wasn't too happy today, even in PT she was fussing, and
mom had to remind the therapist that it wasn't her, it was
Claire's tooth.
OT was cancelled, mom didn't find out until PT appt was nearing
the end, no one called to say there wasn't OT today and mom
could have made other plans, but evidently, policy at rehab
has changed and no calls of cancellations when there is an
appt scheduled prior to the cancelled appt... go figure.
Claire's brother is off this morning with dad to get braces
put on. Should be a big experience for him.
Claire ate really well first thing, mom had some work to do
and Claire wasn't sleeping, so mom kept feeding her and feeding
her staring with 3oz of cereal (spoon) then followed up with
5oz of shake, then onto another 2oz. After therapy, Claire
slept and slept and woke up with a big hunger, so mom popped
open a jar of sweet potatoes/chicken (stage two, so it is
well pureed) with some banana rice cereal mixed in for easier
spoon feeding. Claire slurped it down... literally, at one
point, mom put the spoon in her mouth and she slurped the
food off the spoon) It was her first taste of meat, and she
loved it.... She still seemed hungry, so mom got out more
shake. After a pretty good day of eating, the teeth were really
bothering Claire and gas too (you don't want to know how mom
knew she had bad gas) wondering if it was from the chicken
and sp. Mom gave her some mylacon for gas early in the evening
and followed it up with generic children's tylenol. She seemed
to respond pretty well and later had her meds and food and
off to bed. She was still not settled in, but not fussing,
so mom got some sleep. |
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June
21
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Claire
had a terrific night and slept straight through. Mom was very
pleased.
They were up early to get Claire and kids ready for their
days. Kids off to daycamp and Claire off to daycare.
|
June
20
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Claire
had a terrific night and was up once. Dad got up to get her
while mom got up to get a bottle. She drank about 2oz and
then went back to sleep.... good grrl!
She was up early for daycare and had a good day, tho drinking
only about 7oz, and not eating much before going. Friends
came over tonight and everyone ate pizza (yes, it isn't pizza
night, but we do love pizza around here). In the evening she
had some nice cereal and then about 6oz of shake and then
off to bed... she was a tired baire by the end of the day.
|
June
19
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Happy
Father's day to all the dads out there!!
Claire wanted to spend some quality, one-on-one time with
her daddy, so she had him up until about 2am. Poor dad...
doing his fatherly duty so mom could sleep.
Mom tried to get all the kids out to the beach as early as
possible so dad could sleep, but he was up around 9am and
looking for some breakfast which he enjoyed in some quietness
with friends as mom had the kids out on the shore by then.
Claire had a nice day, hanging out under the umbrella, enjoying
the massage as mom put sunscreen on her. It was really bright
for the Peanut, but she was most comfortable. Mom stripped
her down and dunked her bunnies in the cool water, and Claire
made sure mom knew NOT to do that ever again!! Mom quickly
replaced the diaper and fed Claire until it was time for another
nap, and Claire hung out snoozin' under the beach umbrella
until time for lunch.
The family enjoyed a nice father's day lunch and then a quick
packing before heading back home to start another week. Claire
did really well on the hour and 1/2 drive back home. In the
evening, mom couldn't feed her enough. Dad thought she was
going to 'blow', but she didn't as mom made sure to give her
a break between each 4oz... Claire had a good day of eating,
probably from all that fresh aire! She missed her bath, so
she went to bed in sunscreen and saltwater, but she was much
too tired to go through all that. |
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June
18
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Claire
had a terrific night and slept straight through. Mom even
slept in and got up to make a pot of coffee. It was a gorgeous
morning on the Island and mom was in a big hurry to get the
kids out to the beach before it got too hot.
Dad bought a couple fishing poles and the girls caught some
neat fish, on bonefish, one baby shark (about 8" long)
and one sting-ray. The kids enjoying seeing the different
fish, and later in the day a storm came up, and everyone even
got a glimpse of
a funnel could (way up in the air)... a lot of firsts today!
During the storm, the kids were entertained with boardgames
and snacks and when things
cleared up it was cooler. The umbrellas were set back up and
beach chairs wiped off and mom even had to put on a t-shirt
as the breeze was nice and cool. Claire was loving the temp
and mom even had to put a t-shirt over her legs to keep her
from getting too cool.
Dinner was a yummy lasagna and everyone ate well but were
exhausted from the day. Mom went to bed when Claire did, just
after 10:30pm... Claire's big sister also was in bed early
- closer to 9pm. Around midnight, Claire's daddy was still
up, and Claire wanted to spend some time with him, so she
got up too... fussing. She was battling teeth and gas during
the evenings. No signs of seizures (yeah). |
June
17
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Everyone
is excited today about the big trip to the beach this weekend.
Going to an island in the Gulf with friends who are watching
3 kids and have one of their own... so that will be 7 kids
total and 4 adults. Planning a big Father's Day BBQ and lots
of beach time!
Mom took off work early to go pack and try to beat the traffic
as there will be a Saltwater fishing tournament on the way
to the island.
Everyone arrived in the early evening and enjoyed the views
and ate hotdogs. Looks like a fun time ahead! Claire was caught
up in the excitement and full of big smiles. She was eating
well and had no complaints (except mom forgot her bumbo seat
-- but that just means she will be held more! so she was over
it quickly) |
June
16 |
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Claire
slept through the night, as her last few days had pretty much
wore her out. She didn't have noticable seizures today and everyone
was getting ready for a weekend at the beach... with Claire's
seizures seemingly under control, it should be a nice weekend.
|
June
15 |
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Thinking
they would taper off (as they did start to get farther apart
after a while)... and thinking next time the bloodwork would
be done at the first seizure... By about 2:30am, mom and dad
had both been up, she was having seizures off and on - sometimes
- tho rarely - 5 minutes apart - sometimes 45 minutes apart
- but typically somewhere in between), then gagging and typically
throwing up, so mom would feed her a little more so she would
be digesting before the next one. Since hospice was out of the
equation, and mom didn't want to take her to ER (they would
just take levels and ultimately just increase her meds) mom
opted to just give her a little more med tonight, which shouldn't
change the levels by morning, and go get the levels taken first
thing. There was no rest for the weary tonight.
Mom took Claire early for levels and they were low, but didn't
get a call from the dr until after 2pm, after Claire's next
meds were given. As suspected, dr said to increase the dosage
by .1 or .2mls... and mom just gave her that much more once
she got the word.
Mom cancelled PT and OT today, as she was still having seizures,
but tapering off slowly.
In the evening, she may have had two more of them... just gotta
wait for the meds to kick in. |
June
14
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Claire
was up at 4am. Mom figured she's just bitten her hand again
and it hurt, but then she started continuously crying, so
mom fixed a bottle... when mom got back to the room, Claire
had fallen asleep... or so it appeared that way, but mom was
onto her and her ways. Mom picked Claire up and when Claire
saw the bottle her eyes opened and when mom put it in her
mouth, she drank like mom hadn't seen her drink... in 6 minutes,
Claire finished her 3oz. Mom layed her back in her bed and
Claire slept through the rest of the morning.
Mom checked on her this morning and she was pushing herself
up on one arm, like trying to roll over. Mom picked her up
and gave her meds and mom went into the shower. When she got
out, Claire had fallen asleep. Mom fed her a couple ounces...
about as much as she could get the Peanut to eat before she
went into such a hard sleep that she didn't even wake up when
mom put her in her carseat... but she was breathing fine,
so mom decided she was just really exhausted and let her sleep.
Claire had another 2 seizures at daycare, and by that time,
it was too late to go get the paperwork from the dr's office...
Claire was put on O2 through her canulla and mom decided to
take her for bloodwork tomorrow morning. Mom had gotten a
new bottle of med, and evidently that wasn't the problem this
time, and kicked up her eating, so that wasn't it either.
In the late evening, Claire started having more seizures.
Mom was at a loss.
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June
13
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Claire
fussed part of the night, but it was likely because she bit
her hand. It would be a loud cry, then nothing, and checking
on her she appeared to be sleeping, so probably biting it
in her sleep.
In the morning, Claire was off to daycare.
Dad went home early from work as he was feeling run down and
ended up sleeping for about 3 hours - off and on, while Claire's
big sister also slept (and was in a great mood all evening).
When mom picked her up, her caregiver said Claire had a seizure,
so mom called the drs office to get levels taken to check
her medicine levels in her blood. They had would have paperwork
ready tomorrow for bloodwork.
In the evening, Claire was awake and happy and eating really
well. She pretty much wanted a bottle in her mouth all night
and was drinking it. At one point, mom decided to just entertain
her and try to get her mind off the bottle. She'd eaten well
enough and mom didn't want to see the food again, esp since
Claire had been known to give us all an evening show... of
food.
Claire was in bed before 9:30pm and so was mom and dad.
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June
12
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Claire
had a good day, tho not eating great, still holding her own.
Mom noticed 2 seizures late in the day and got a little concerned.
She felt like she finally got her meds in order and wondered
if Claire was getting enough fluids with all her shakes and
cereal, so mom gave Claire a lot of pedialyte and Claire slurped
it down. In the evening, mom kicked up Claire's feeding time
a notch to be sure she was so full she'd just pass out (before
throwing up that is) and she did. |
June
11
27 months
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Today
was a lazy day with a tropical storm passing to our west.
The sun was in and out much of the day with the wind kicking
up and then looking like a beautiful spring day. Surely it
was true that if at any given moment you didn't like the weather
today, just wait 2 minutes and it will change. Still a hot
and muggy day for the most part, but who knew as everyone
was inside playing. Mom and Claire worked on Claire's PT exercises
and holding up her head in her Bumbo seat. Overall, a most
relaxing day. Dad was missing for much of the day as he went
to the store for a sign for some rental property and then
to a warehouse store for more shopping meeting a buddy of
his... Eventually, they came home and fixed dinner, a most
delicious meal, during which Claire threw up and disturbed
dad's friend... everyone else just cleaned her up and went
back to eating. Later card games came out and much fun was
had as mom's luck was running high. Claire was in bed by 10pm,
her sibs got to enjoy a night of staying up late, but were
in bed shortly afterwards. |
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