Journal -- 25th Month
drank from the 2 oz bottle and held it for a little bit, but
either her arm gets tired, or she gets bored with the whole
idea. After breakfast, it was off to church. Daddy changed her
diaper and her clothes while mom finished getting ready for
Claire was a doll in church. Once they got there, mom put on
her shoes, bib and bow and started feeding her again. Eventually,
she was full and decided to start jabbering. Mom switched her
position a few times to get her to quiet down, but Claire had
to finish saying what she wanted to say... and it was quite
loud, but cute.
She eventually fell asleep and mom gave her to dad and he held
her the rest of church. They enjoyed a pancake breakfast after
church and then home for Claire and big sister to have naps.
After naps, and lots more shake, the family packed up and went
to Claire's aunt and uncle's home.
Claire's uncle's birthday is next week, so the family gave him
a early birthday present, had dinner and cake to celebrate.
It was a very fun night, and mom enjoyed not having to cook.
Claire wanted to sleep once home, but mom needed to give her
meds and more food. Then off to sleepyland... around 10pm.
had a fun day. Mostly eating and sleeping.
Claire is working on holding her bottle. Mom puts it in her
hand and wraps her thumbs round the bottom of the 2oz plastic
bottle, and holding only Claire's elbows, Claire pulls it
towards her mouth and starts drinking. It is the cutes thing
to see! Don't worry, mom has some of it on video! Pix coming
Dad had a lot of work to do today, so he was in and out all
day. Claire's brother was bored most of the day (according
to him) and Claire's sister was trying to clean her room,
and tho her intentions were good, she ended up playing more
and messing it up more... so cleaning her room has a whole
new meaning around the house these days. In the evening, a
friend of daddy's came over and the family had steak for dinner.
It was such a nice evening, the family played out in the back
yard and found a vine to play on (like a trapeze) while mom
and Claire hung out inside with the windows wide open and
the cool spring breeze blowing through the home. Mom worked
on cleaning Claire's room too, but with much distraction.
Grandpa called on the computer and they tested out his new
webcam he got for his birthday from Claire's family. He loves
it, and they love seeing him too. As the night got late, Claire
settled down and went to bed fairly late.
was up just before 4am.. she started with a little fuss, then
got louder. Mom realized it was almost time for Pope John
Paul II's funeral to begin, so she got the bottle ready and
turned on the tv while she fed Claire. Dad was trying to sleep,
but eventually woke up and put on his glasses, then listed
to a couple readings and couldn't stay awake for the homily,
especially since the Italian speaker and the American translator
were talking equally loudly, and it was frustrating... not
to mention Claire's oxygen machine, not exactly silent. Dad
eventually went back to bed and Claire was ready to start
talking during the homily, so mom had to try to hush her (moving
her around, trying to feed her more) so she could hear the
words. Everyone was back to sleep by 5am, and up again by
6am to get ready for work and school.
Mom got ready and then woke Claire up for her bath and bottle.
She guzzled down 4oz before she got to daycare. She's been
putting her hands in the air, as if reaching for the bottle..
Claire had a good day and drank well. She looks like she's
putting on some weight.
slept well last night and mom had to wake her in the morning
for her bottle. Not time for a bath this morning. Dad took
her to her audiology appt and got her new ear piece, so mom
with put it on over the weekend so Claire can use her hearing
aid again. Mom forgot to ask dad to take the hearing aid with
him when he took Claire to the appt... oops. Mom was just
happy that he could get Claire to the appt and pick up the
hearing piece... and get her back to daycare. Claire ate really
well, even her daycare provider said she guzzled down 8 oz
of shake quickly this afternoon.
After daycare, Claire got home and she and mom did some PT,
they tried out the new stroller again and played and ate.
Then mom put dinner together and after dinner tried to get
the kids off to bed at a reasonable time... hasn't been to
easy after the time change, it is now light at 8pm, bedtime.
whew. Just before the kids baths, the water guy came by and
let some pressure out of the water tank, as it had filled
with air and the family was getting yuky water randomly...
mom let the water run a lot to get the air and rust out of
the lines... it looks much better now.
had a good night and and even better day.
She went to PT at noon, and she did some nice things. She
is learning to put some pressure on her legs and strengthen
them. Mom got in on the act today as Claire's therapist let
mom do some of the work with Claire so they can work on leg
strengthening at home. After PT, was OT. Mom brought a small
2oz bottle (from when Claire was in NICU) to the therapy today.
She figured it was light enough that Claire could use it to
learn to hold her bottle. Her OT helped her learn and it was
so fun to watch. Claire would hold it for 5 or 10 seconds
at a time... a couple times... mom is hopeful that in the
coming months, Claire will learn to hold it herself.
After therapy, Claire went for a fitting for her new stoller.
It is a special stroller where
everything supports her (head, under arms, legs) and everything
is adjustable. She fell asleep during the fitting... in the
chair... guess that is a good sign :o)
Once the fitting was over (after 2 hours as they made the
adjustments there) and after mom was able to get it in her
car, she picked up Claire's sibs and home they went to work
on homework, etc. Claire was in her chair for a bit... the
Claire Chair... and mom put the table on it so she could have
a couple toys to look at and see if she would like to play
with them. Mom will do this every night with different toys
and home that Claire will find one that she loves enough to
make the effort to play with... right now, she could reach
out and grab one, but they just don't seem to interest her
like her mom's nose and necklace. ;o)
Claire had a nice night and drank pretty well today, maybe
20 oz. With so much going on, mom had to cancel Music Therapy,
but she should get it on Friday.
was up around 4am, and didn't really want to go back to sleep.
Mom gave her some mylacon for gas, then fixed her a bottle
and eventually she settled down.
Mom woke her in the morning, she was so exhausted (as was
mom) and got a nice warm bath, which she loved, she smiled
for her daddy when she got out as mom dried her hair with
a towel. She drank an oz or two, and was off to daycare for
the day. Mom had a meeting, so she wasn't able to lolly-gag
around and had to rush off after dropping off little Claire.
slept through the rest of the night once Dad got her to bed.
In the morning, mom woke her for breakfast and meds... she
seemed really hungry and alert once she woke up. She drank
4oz and off to daycare. Mom picked her up a little later for
her noon PT and at her daycare Claire drank the better part
of a 4oz bottle. Off to PT where she drank another 4oz...
and talking talking talking. Her therapist couldn't get over
how much Claire wanted to communicate with her, and her therapist
would take back, giving Claire more reason to continue on!
Claire had a good PT session. She layed on her tummy with
a towel rolled up under her arms/shoulders and worked on getting
her head mid-line and up to bring her back straighter. Claire
also did some rolling, where the therapist only moved her
feet, and Claire did the rest of the work... she is always
full of smiles when she's rolling! She worked on sitting up
Mom worked on appts for getting her new chair to keep her
back straight and help her sit better... also to get her hearing
aid adjusted. Mom also found out that the insurance approved
PT and OT through the end of May, so she made the appts for
Mom is thinking she's going to have to change the website
around a bit, Claire isn't really a baby anymore... she's
more of a toddler, without the 'toddling'... but not really
Claire drank well at daycare, about 14oz all morning and into
the afternoon. In the evening mom took her outside for a bit
to watch the kids play, then back inside where Claire spoke
loudly from her swing to mom while mom made dinner. After
dinner, Claire started to fall asleep while swinging, then
during her dinner, so mom put her down without a bath tonight.
A friend was over visiting in the evening and mom got to bed
late. Claire was in bed around 10pm.
slept through the night.. was up for meds and breakfast, and
slept through mass too. She was such a good baby, and mom
let her stay in her carseat through mass so that she could
continue sleeping... didn't even unbuckle her.
The family ran errands with dad, then back home to find most
of the day was gone, and daddy's band was singing at a Goodwill
benefit, so he left a couple hours after they got home, and
somewhere in there mom fed Claire and put her back to sleep,
and took a little nap herself... only to wake up in time to
get dinner ready, kids bathed and ready for bed herself just
before dad got home. Claire had close to 20oz today... she
slept much of the day too. Claire was up again close to 11pm.
Dad took her out of the room and fed her a couple oz and returned
her to her bed once she settled back down. She went right
back to sleep.
slept through the night. Mom did too, and they both slept
in longer than they had a right to. Claire got her meds a
little later than usual because of it tho. She ate okay. Dad
had more real estate to sell in the morning... contracts to
be signed and houses to show. Mom and Claire and the kids
hung out at home. Mom spent most of the day cleaning and thinking
of all the things she needed to be doing.. got a bit overwhelmed
and decided to make chocolate chip cookies... that's always
great comfort food for an overwhelmed mom... the house was
basically clean, so why not.
When dad go home, the family decided to have friends over
for dinner. It was a nice evening, they have three kids and
are always so much fun to have over! The food was good (dad's
lasagna), and cookies for dessert... yum!
Claire was in bed around 11pm, and the kids before midnight,
and mom realized with the time change tonight, there will
be a lot of naps happening tomorrow! Claire had just over
20oz today. Mom is still adding vegetable and olive oil to
Claire's shakes for a little added fat.
slept through the night. Mom had to wake her again... it is
so hard to do as she is so adorable when she sleeps. She was
up for a face cleaning (her heat rash is coming back), meds,
change of clothes (still sweats some) and diaper and breakfast...
then off to daycare.
Big storms today, tornado watches like yesterday and possible
slept through the night. Mom had to wake her up, her nose
was a little congested so mom gave her a few squirts of saling
(little noses) spray. She had a nice bath and a few ounces
of shake, then off to daycare.
Claire had PT today. Her daddy took her. Her regulare therapist
is back from vacation and was very pleased with everything
Claire had accomplished today.
She was holding a rattle and bringing
it to her mouth, and playing with her toes.
Mom picked her up from daycare and they were watching the
rain come down once they got home. Claire ate really well
today, close to 24 oz of shake. After mom put her to bed,
a transformer blew and the electricity went out... it came
back on, then off again within 1 minute. Claire's O2 machine
was on (remember she's on blowby at night) and it made has
a nice loud alarm that lets you know it isn't working... and
in the darkness, mom was able to grab a flashlight and turn
it on... it does have some battery in it, as the alarm was
going off and there was a light on the machine (pretty cool!).
The electricity was off for about an hour, and the house was
cool as the temp outside was probably in the 60's or so. Everyone
just went to sleep... Claire woke up about 5 minutes after
the power had gone off (the second time) and was crying..
as if she was scared. Mom turned on the flashlight and faced
it towards the ceiling and it lit the room up well... she
fed Claire the rest of the bottle she had on the nightstand
and Claire snuggled with mom and went back to sleep... good
slept through the night.
She had such a nice day... eating and sleeping and eating.
At 9am, her hospice coordinatore came to visit and had a nice
long discussion with mom. After eating and napping more, she
was off to OT and had some sweet potatoes and did lots of
assisted rolling, and OH the smiles... Claire loves rolling!
After OT came Music Therapy, tho they didn't get much of that
in when the Hospice nurse came by and visited too. Claire
weighed in at a whopping 13lbs 12 1/2 oz. Mom is thinking
that is the most she's weighed yet! She's been eating very
well and sleeping very well tho once a day doing her cough,
cough, gag, thow up... it is getting down to a minimum.
Claire showed a sign of a slight seizure, but it was so slight
mom is going to try and not worry about it... but keep her
eyes on Claire all the same... it was time for her meds anyway.
In the evening, mom gave her meds a little early in hopes
of everyone getting to bed earlier than usual. No more signs
of a seizure tonight.
was up at 5:30am... not because she was excited that the Easter
Bunny had come to see her, but because mom woke her up for
sunrise mass. It was a beautiful mass, mom wished she had
her camera with her, mass on the beach is always nice.
Claire had a fun day, she slept much of it and ate pretty
well.. as she had all weekend.
The family opted to trek back home tomorrow and avoid much
traffic today on the interstate. Kids are off tomorrow and
mom took leave too.
Claire traveled well, drank some and slept much.
busy day today. Mom's first day of annual leave as the family
heads to Grandma (and Grandpa)'s home for Easter weekend.
The kids are excited as the family hasn't visited since Christmas
Mom spent the early part of the day cleaning and packing and
later in the day finishing up as dad had an appt at 5pm that
was cancelled, and it was fortunate so he could help mom finish
loading the car, but didn't make much difference in the ETD.
The kids traveled great, sleeping much of the trip and Claire
slept for all of it.
slept through the night. She was coughing a bunch during the
night and mom turned off the ceiling fan and covered her a
little better. When mom checked on her in the morning, she
was soaked with sweat. Mom woke her with meds and a nice warm
bubble bath. Then food and off to daycare. Claire drank almost
4 oz this morning. Her tummy looked normal, not too full,
so she probably digested all that was in there overnight.
slept through the night. She was up for church this morning.
Mom is a little nervous about taking her to church this time
of year... it is always so full and with all the colds and
flu going around, it makes mom nervous. But the spirit needs
to be replenished as well, so off they go. It was Palm Sunday
today. All Catholics know it is the longest mass of the year
with the lengthy gospel reading about the crucifixion of Jesus.
This year, before the priest came down the aisle, he read
a short Gospel, and as everything was quiet... Claire let
out a cough, cough, gag, and puke. And all heads turned to
Claire, as the family was in the middle of the church facing
the back of the church (where the priest was) and mom hurried
to distract Claire so she would keep her food down. Dad had
not yet sat down and was standing at the back of the church.
Mom was comforted to know that he didn't hear Claire (to mom,
her gagging was really loud)... so hopefully fewer people
were distracted by it than what mom thought.
After church, mom worked to get more food in Claire. She hasn't
been eating well, so mom was making the shakes thinner so
Claire wouldn't need to work as hard to drink them. She just
seems indifferent sometimes. When Claire is hungry, she will
slurp down an ounce rather quickly... but then seem so full,
so lately mom has been squirting more in her mouth, and she
is pretty good about swallowing it, up to a point where she
has about 3oz and appears full.
Claire may have had 16oz today. Including 2oz of Pedialyte
as her tummy looks very full and may be constipated.
Claire ate, slept, ate, and slept most of the day.
In the evening, mom was bothering her again with that ol'
bottle... eventually she just pretended to fall asleep, so
after 4oz, mom put her to bed.
It seems that Claire would sleep the entire day away if she
was allowed. She hasn't been waking up to eat, mom has had
to wake her on most mornings, and while she appears hungry,
she drinks an oz or two and pretty much could go back to sleep.
This makes it easy to get her to sleep at night, and also
helps her to sleep through the night... but mom is very concerned
that she is getting too few calories. Mom will blame it on
the meds again.
slept through the night. She still isn't eating great, maybe
20 oz today total and she needs about 24oz per day.
slept through the night. Her Hospice nurse went by to see
her at daycare today as mom couldn't meet with her today.
Here is what her nurse had to say:
was swinging away when I went to see her. She
weighed in at 13lbs. 4oz.
Her upper lobes have some congestion (loose -- which is good).
Lower lobes are clear. Color
is good and she had a big smile for me. I
recommend giving her some extra fluids to break up congestion.
Nebulizer treatment in the evening would be beneficial.
Claire is so very lucky to have such a terrific nurse!
About 16 oz today.
St. Patrick's Day everyone!
Claire had a really good day. She had on a green outfit, but
she spit up all over it, so mom put on another one... when
you're Irish, you gotta have more than one green outfit...
and Claire has three! She also had a shamrock sticker on her
carseat and later got some green beads for her carseat...
she loves looking at them.
She and mom delivered some shamrock cookies to the kids' school
in the morning for their classes to snack on, and while it
was the last day of school before Spring Break, they also
enjoyed Easter Egg Hunts, and a fun day! But for Claire, it
was her last RSV shot for the season. When she got the shot
she cried for a minute or two... much longer than usual, even
dad was surprised!
In the evening, Claire relaxed with mom and they both went
to bed early.
had occupational therapy today and did well. She really wants
to grab things and pull them to her mouth; some coordination
is still needed there.
had physical therapy today and did well - her daddy took her.
Later in the evening, mom picked up the kids early from school
and got them dressed for family pictures. They came out pretty
well, mom was very pleased with the sitting.
slept through the night. She's been sleeping a lot, which
leads mom to believe it is the anti-seizure med that is too
strong. So mom took it upon herself to give her a smaller
dosage until the second part of the dosage could be picked
up (this morning). Mom took a dosage from the new bottle for
her afternoon dose and will use that bottle for further dosing.
Claire was starting to play some with her new toy, but then
fell asleep... guess the morning bath and med was too much
Mom took down the birthday guestbook. She felt like everyone
who wanted to sign it already did so. If you still want to
sign it, email Claire and she'll send you a link. Mom may
put another one up for general messages in the near future.
slept through the night.
She woke up sweaty. The ceiling fan at night was drying mom
out and the humidifier wasn't working (evidently) so mom decided
to just lower the temp in the home and leave the fan off,
but guess it wasn't low enough for Baire.
Mom woke her, sponged her down, gave her meds and got her
in an outfit that was cooler.
She tried to sleep during church, but never seemed to get
comfortable. After church the family ran errands, and that
was a chance for her to be in her carseat and sleeping much
of the time.. tho fighting sleep. At home, mom and Claire
took a nap and that pretty much ate up most of the day for
them. Claire's dad put her toy together for her so she could
play a little before her nap, but her big sister had more
fun with it than Claire did. It will take a while until Claire
gets the idea of just how much fun she is going to have. Mom
is hopeful it will offer much exercise and hand-eye coordination...
and foot coordination for Claire.
It was pretty late when mom finished feeding Claire, so she
opted to give her her bath in the morning. Claire didn't drink
a lot today, she was overall lethargic and not hungry. Mom
may have gotten 16-20 oz in her today.
it is... the day of Claire's big 2nd Birthday Partay!
She isn't too excited... or at least, she's very tired as
she woke up for meds and fell asleep before mom got her breakfast
ready. Mom was unable to awaken her much before 2pm to eat...
mom was not too happy about that. She feels the meds are too
strong (it was from the bottom of the bottle at the pharmacy
afterall) and too much for Claire... so she will likely cut
down on the amount until she finds a good point where Claire
doesn't fall asleep for hours after each dose.
The party was big fun and mom would like to thank everyone
who came (and those who wanted to) for sharing in Claire's
special celebration. Her family is very proud
of her and how tough she is for such a small person. She has
made much progress over the last year including overcoming
bouts with pneumonia and bronchitis.. and learning to open
her hands and hold things in them! Gooo Grrl!
Claire was up for a very long time, and after everyone left
the party, mom fed her a tummy full and she fell asleep once
she got to the dark bedroom and hit the bed. Sweet Pea.
TURNS 2 YEARS OLD TODAY !
She was up just before 4am this morning... all the excitement,
guess she just couldn't sleep. Mom fixed her a bottle and
she drank a couple ounces and drifted back to sleep on mom's
shoulder. Back to her bed she went.
When morning came, mom gently woke her up with lots of kisses,
then picked her up and bounced her around softly so she could
get that wonderful smile starting off the day. Claire started
her day with meds and some sweet potato shake. YUM.
Mom spent a little more time with her this morning than usual...
after all, everyone's kisses and hugs had to be delivered
to the little Sweet Pea! She drank only a few ounces... she
was a bit too excited to eat this morning.
was off to daycare where her caregiver just started baking
a birthday cake for Claire.
What a milestone!
Claire had a fun day at daycare and in the evening a friend
brought by a beautiful cake and Claire had her presents and
cake in the evening and a friend over to help celebrate. Mom
got video of everyone singing to her and didn't get video
of dad dropping the cake. It was salvagable and most delicious
all the same. Her family got her a new toy that she can lay
down and kick and lights go off... try to get pix once it
is put together and she gets the hang of it... sounds like
a perfect gift for the girl who likes to kick kick kick!
She ate about 5oz of cereal (with fruit) and had a bath before
her party, and fell asleep after her party... close to 10:30pm.
Mom is thinking of taking down the guestbook on Sunday night...
so it will just be a birthday book, and bring up another one
on the next special occasion... or just randomly.