Journal -- 37th Month
had a terrific weekend. Hung out outside a bit and mostly
just ate and slept. Her rash on her face appears to be back,
but mom's on top of things and it should be gone before Easter.
had (private pay)therapy today and did really well. Her therapist
noticed she'd been practicing her standing, but also noticed
her hips didn't like to straighten out completely. Mom will
be working on that over the next two weeks.
went to Shands today to see her geneticist. She hasn't seen
him in about 3 years (wow, that sounds cool) and he was very
happy to see her. His assistant (sorry, can't remember what
her title was) said they were tickled that Claire came to
see them as they don't ever get the chance to meet a trisomy
18 child who is 3 years old. Mom grinned really big.
They suggested having Claire checked for Wilms Tumors (her
kidneys) and mentioned that most kids get them before 4, but
trier's like Claire are more likely to get them after 4 years
Mom was familiar with hearing about them and had already contacted
Claire's dr by email in the previous month and Claire was
scheduled already for the ultrasound. Claire's dr was impressed
that they'd already been 'on it'. He also noticed the stools
from feeling her tummy and prescribed Miralax. Ironically,
when they got home with all the kids, it was a bit crazy,
so they didn't get the prescription filled, but did call Claire's
dr and he agreed it would be fine to give her for constipation
(mom thinks it could be the milk she's drinking now). Claire
pretty much emptied her tummy that night before bedtime...
but not because of the Miralax, just because she just did...
and mom had been giving her mostly fluids in the evening...
ok, there's that.
was up with her daddy sometime after mom went to bed, until
Dad wasn't too sure why she was so fussy, but he let mom sleep.
In hindsight, mom thought she might have some constipations,
so she started Claire's morning with juice.
Claire is on 80-90% milk mixed with formula. She's doing great
with it, tho mom is wondering if that has her constipated.
So with the juice, things should come under control rather
She went to school today and looking quite dapper.
slept through much of mass in her aunt's arms. She also snored
loudly, and everyone chuckled. Claire has no idea how many
smiles she initiated during church.
She went to lunch afterwards with family and friends and smiled
the whole time. Mom put her in an umbrella stroller, for lack
of better seating (didn't now they were going to lunch after
mass, so didn't prepare too well for that). After lunch, Claire
finished a bottle and took a nap, while her mom and sister
also took one, and big brother and dad went to run errands.
In the evening, the family sat around the table for dinner,
except for Claire, she was still sleeping. Mom woke her shortly
after to feed her and play a bit before bedtime. She was up
for a good long while before her last meal of the evening
and off to bed. ... mom followed too. This losing an hour
bit is for the birds.
slept well and everyone had a fun day trying to 'fool' each
other. One good one was dad telling Claire's sister that he
saw a lion in the back yard last night. Mom told Claire's
brother that all his friends should come over to spend the
whole weekend and bring school clothes so they could drop
them off on Monday at school.... his eyes lit up... and he
was smarter than all that, but forgot what day it was.
Claire had a super day eating and off the family went to the
Springtime festivities downtown. A gorgeous day and they saw
many friends. There was an excellent band playing, so they
got to hear some good songs and Claire just kicked back in
the shade with a nice breeze blowing on her. It was a fun
time for mom, dad and Claire, but brother and sister weren't
too excited about hearing a band with 'old songs'.
In the evening, friends came over for dinner and to watch
the NCAA final four play. Too bad the games turned out to
be blowouts, when so many other games this year had gone into
overtime. Time changes tonight, so there will be some sleep
lost somewhere. But that's what naps are for!
slept really well last night. She's been getting up in the
middle of the night lately, either too cold or too hot and
of course, then wanting to eat, so mom feeds her.
She's getting heavier and mom is so proud. Pix are coming
Mom took her bumbo seat to her school today, along with a
website, so hopefully they can order one for her to have there
every day. Yesterday was Claire's IEP, and that was interesting.
She's met alot of goals, and mom will share all that later,
but overall advancing, tho slowly, we don't say snails pace,
we say Claire's pace. But any improvements at all are welcome,
so mom is not discouraged, but rather optimistic.
Life is good.
slept like a rock, and so did mom (she's been cutting down
on her coffee).
In the morning, Claire was awake and a slightly green nose,
not too bad tho. She got a bath and dad fed her a big mess
of food -- maybe 10oz and she ate really well. Mom made her
a bunch more and off to school they went.
and dad were up and down all night. Dad wasn't feeling good
and had gone to bed early anyway, so he wasn't sleeping well,
and mom was up with Claire as she was hungry around 4am, after
being up at 1am and 2am with various things going on in the
house... one of them was an odd animal noise coming from outside
the window. Maybe a frog or a rabbit in distress... too strange,
couldn't quite figure it out.
Claire had a pretty good day. She ate well in the morning
and ate really well at school, finishing most of her food
by the end of the day. Her teacher said she was close to 20oz
for the day (at school) and was feeding her when mom picked
her up. On the way home, Claire had her hands in her mouth,
as if she was passed the whole signing bit and just wanted
to chew on something. Once home, mom fed her another 6oz,
then waited a bit so she wouldn't throw it up (remember she'd
just eaten about 4oz at her school minutes before) and the
hands went back into her mouth. Mom gave her a bit longer
and then back in the chair for more food. She nibbled a bit,
but seemed uninterested until about 2-3 hours later, just
before bedtime, and her tummy still seemed full, and she ate
another 8oz or so, and then off to sleep.
was up a bit, but went back to sleep. Mom was exhausted and
woke up just as tired as when she went back to sleep, not
too sure why, maybe too much coffee.
Claire had a good day, she went to her PT today, which the
family is paying for. Claire's school still hasn't started
PT there yet through the school system, and it is spring break
(probably won't be getting much in the way of any therapies
during breaks?). Mom did get more necessary paperwork from
the therapists to hand in on Monday. Claire was talking and
putting on a show for the therapist. She was weight bearing
really well (different from standing as she wasn't necessarily
upright, just hanging off a ball, or a small bench but pushing
and bearing much of her weight on her legs). Mom was very
pleased and with the therapist, decided that weight bearing
was going to be our priority. With Claire, there are so many
things to work on, you don't always know what to start with,
and this will give more direction to mom, just following the
exercises from Claire's therapy and being evaluated with each
session. Mom is really hoping to get the private therapy paid
for, since much of the stretches and straightening isn't going
to be something the school system will care about, they only
focus on what she will need to learn, not necessarily what
she would need to breathe (as that would be medically necessary,
and they aren't concerned with that - as mom has been told
on numerous occasions). The therapy will be necessary for
Claire and her scoliosis, indeed. The standing too, to help
her little hips form better, again, not something that the
school system would be concerned with, in theory. Not that
any of this matters since she isn't getting services from
the school system at this point anyway. (okay, okay... getting
a little bitter here). Mom does feel very lucky that Claire
is in a good school, and certainly pleased with the teachers
was up at 4am, fussing a bit, but went back to sleep.
She was awake when mom went to get her, and all smiles. When
mom picked her up, she closed her eyes as if she wanted to
go back to sleep and mom woke her. Mom quickly reminded her
that SHE was awake first, and not sleeping when mom walked
She was bathed and dressed and ate her food cold as mom was
in a big hurry to get out the door.
Today mom made a call to her dr's office who she saw when
she was expecting Claire. It was weird, and she didn't talk
to the dr, but he was the one who gave her the news from the
amnio. He was/is a terrific guy, and after a followup visit
where mom mentioned she was going to continue the pregnancy,
they hadn't talked to him. Mom feels confident that he knows
Claire is still thriving, it is a small town afterall, but
feels she should have kept in touch with him these past 3
1/2 years, but never did. For mom it is awkward as he had
no hopes that Claire would make it to term alive, and here
she is, years later, and cute as a button might I add! Mom
thought many times of going by the office with Claire, but
not too sure how the dr would react. If he didn't receive
her well, it would break mom's heart, and mom is happy without
any dr's approvals.
While mom is incredibly saddened that Claire will always be
small and have her problems, she has also come to realize
that other moms unknowingly wish for a baby like Claire, when
they wish for their child to be small forever. Be careful
how you wish.
The reason for the call was another piece of paper that mom
has long misplaced, the original amnio results. Mom called
to get a copy from the dr's office to give to the Persons
with Disabilities, and dad said he'd go by and pick it up
today during his errands.
was up with Claire until about 1:30am.
Mom woke Claire this morning to get her ready for school and
off they went with Dad's help. The kids are home today and
dad will be taking them to preview homes most of the day.
Big brother has his third Harry Potter book he's in the middle
of and big sister will likely be entertaining herself with
coloring or videos.
Mom got Claire to school and hung out for a little bit. Claire
has new teachers (new to Claire) who are going to watch her
this week for Spring Break, as her school is 'out' this week.
Mom watched one of the teachers prepare Claire's cereal using
regular milk, and mom asked if it was for Claire, she said
'yes'. Mom wondered out loud and the teacher said they fed
her milk on Friday (but just her morning meal) and mom was
puzzled. Claire didn't tell mom she was sneaking in real milk
on the side, and not her usual formula. Hmmm... the little
stinker. The teacher suggested throwing out the cereal, but
mom said they could feed it to her, maybe not the smartest
idea tho it was mixed in with cereal. Claire threw it up later
in the day, tho that may have been coincidence, not too sure
since mom wasn't there to see that.
Claire did eat well during the day, and mom has been adding
a few tablespoons of cows milk in with Claire's food to see
how she does with it. It would be nice to have her on the
same milk everyone else drinks (and drinks a lot at Claire's
house). Keep everyone posted on all that.
Mom spent part of her lunch tracking down rehab info to pass
along to the county schools so they can try to get Claire
some rehab soon. Also info for Persons with Disability so
they can get Claire into the program and maybe the family
can get some benefits from that, like therapy for Claire.
Mom also worked to get a discount for the therapies the family
was going to have to pay for (private pay) for Claire. She
heard there was one and was transferred several times before
getting to the person who could give her more information.
So mom is getting her discount, it will still add up for all
the therapies, but she's cutting down on the frequency and
hoping Claire's progress won't be hurt from the craziness
of losing her benefits when she turned 3. sad.
The evening was relaxing. Ate lasagna that dad made over the
weekend and kicked back for a bit. Mom worked on an ad for
Dad's deadline and dad fed Claire more food and got her to
bed. She'll have her bath in the morning.
family was up early and packing for a visit with friends at
the beach. They got out a little later than they liked, but
it was a beautiful day and a nice drive through the wetlands.
Claire ate plenty and got nothing but fresh air from arrival
to departure and mom took the older kids for a walk on the
beach to collect sea shells. Of course, big sister only collected
the largest shells she could find, and big brother wanted
to dead crabs to take back home and dry out. Sadly, there
were many small crabs, fully intact, on the beach today.
The family stopped by a furniture store that dad had been
lurking in for a few days prior and bought a new couch and
loveseat. They are beautiful. After many months of looking
and pondering, they jumped in and bought one. Claire was very
hungry, so mom took her to the car, along with big sister,
and fed Claire cold food. But she didn't mind it... something
more to keep in the back of her mind. It went down as well
as if it were warmed (poor dear was really hungry) them mom
ran out just as dad came out and the family went home to fatten
that little one up even more. It was late by then, so dinner
was cereal for everyone. Guess that's part of traveling.
was up at 4am, mom fixed her a bottle, but she wasn't too
interested after the first couple sips. Mom thinks she was
just cool. Claire went back to sleep after they cuddled and
mom covered her with a blanket.
Mom woke her later for a bath and off to see her big sister's
play. Mom fed her during the play and when she got home, she
snoozed for a bit until mom woke her for PT (at home, from
mom) and then more lunch and back to sleep.
had a good day. She ate well at school, including a 1/3 banana
she ate and seemed to have loved. Two of her goals for the
next year will be drinking from a sippy cup and eating foods
that are more solid. Guess her teacher is getting a jump start
Mom noticed the guestbook for Claire's birthday wishes aren't
working. She's been working on it, but decided to take it
down until it is working again. ho hum. Not too sure how it
broke, since it was working fine over the weekend, but she'll
work on it. Thanks everyone who got in early and signed it...
it will be a cherished memory.
had a runny nose, but clear... yeah! As if she finally figured
out how to heal herself! Yeah!
She had a great morning, very leisurely as her grandma, grandpa
and aunt were still visiting, but leaving today. She ate great,
and cuddled much before heading out the door. Evidently, there
was an Occupational Therapist waiting on her at school to
do a screening so she could do an evaluations, so she could
meet with mom to discuss therapy. A little drawn out process
mom thinks... but she'll play along for a little while. This
obviously means that Claire won't be getting PT, OT or Speech
therapy any time soon. sad. Last week was her therapy that
was paid for by the state (after all the insurance was exhausted)
so now mom has to do it and pay through the nose for any other
therapy Claire will get... until the school system gets their
ducks in a row. It isn't as if Claire turning 3 is something
no one knew would happen... last weekend. ho hum. Claire's
teacher told mom that she had a plan in place last November
for a child turning 3 in December, and the child still doesn't
get her therapy. Doesn't sound good. Fingers crossed and prayers
that it all works out for Claire. She was fast asleep as mom
left her school. The grands really wore her out this morning.
was up with a dry nose... no green stuff around for miles.
Mom was ticked over that!!
She had a slow rising day, tho she was up earlier at 4am,
drinking her bottle (clean nose then too!), and mom gave her
meds a bit early so they could all sleep in.
The family had a small breakfast, then some went to the baseball
game and others cleaned up from the party and lounged around
while Claire got up, ate, went back to bed. Tired bear....
being 3 can really take a lot out of you! Later in the evening,
dinner was brought in from BBQ place and everyone ate, hung
out and later in the evening went to mass. Came home and ate
a lemon meringue pie that mom made earlier that day, and played
with the kids in the evening until bedtime. Everyone got to
be late tonight, with mass not being over until 8pm, it was
inevitable. Earlier bedtime tomorrow night is in order!
had a great day. Woke up with her usual green nose, but mom
salined and suctioned and gave her decongestant (she's been
using Tylenol Stuffy Noses and Little Noses Decongestant).
Getting fluids in her when she can and keeping the calories
flying in. It has been great having so much help, between
Claire's cousin and the rest of the family around for help
with feedings, mom has more time to get ready and enjoy the
party without much worry given to what Claire is up to. And
Claire is loving all the attention, tho admittedly, she did
sleep through a good part of the party. Everytime mom when
to pick her up, someone wanted to hold her, so she wasn't
really sleeping much.
Everyone was so good about not bringing a lot of presents,
and Claire got some beautiful things too.. and the donations
were nice for Claire's charities! Thanks to everyone who is
giving in Claire's names and to everyone who is sending warm
thoughts her way!! She has such a great support group, and
that makes the families life much easier.
Claire's uncle surprised everyone, coming into town for the
party, and there were lots of people there to share the big
day! Mom made a wonderful chicken pasta salad and double batch
of chocolate chip/coconut cookies and other munchies. Dad's
friend brought over some Shamrock cookies -- they went very
quickly as they came from a local bakery. Then mom made the
cake with lots of candy all over it. There were lots of kids
at the party and their little eyes lit up when they saw the
It was a banner day being surrounded by family and friends.
So many people could come, but they were certainly in our
thoughts as we celebrated one more year for Claire. We also
thought of all the little Trisomy 18 babies who have left
this earth, and the sad families they left behind; we pray
for them daily.