Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 53
was up this morning with mom, clean and happy. Mom gave her a
little food this morning, trying to get her another meal in during
the day. Mom is back to her goal of fattening Claire up (that's
what moms do - just ask Grandma!).
|August 9||Claire had a good day, tho she woke up with throwup in her hair... evidently mom missed that noise during the night and Claire got an extra (long) bath this morning to clean her up... then off to school. She seemed to eat well during the day and didn't throw up. Mom is sure that if the fingers can stay out of the mouth, Claire can keep her food down. Must be some drainage going down the back of her throat that is uncomfortable for her. Tho it seems like she isn't keepin her food down, she is really having some great big meals during the day... and her problem is quite random. She could go a whole day and keep her food down, but she won't be able to use her hands, because they'd have to be kept in her arm bands, and mom doesn't like that idea either... there's a happy medium... and mom will find it.|
|August 8||Claire had a nice day at home with mom and the sibs. She was up and didn't take a morning nap, ate well tho and was off to PT where she did pretty well standing. Her therapist is always so proud of her standing. Claire's big sis came along as well with her summer reading book and finished up a chapter, then played with the PT toys. After PT, Claire was back home and fell asleep. Mom woke her tho for lunch and let her go back to sleep and mom got more work done. Claire is keeping her food down pretty well... now to fatten her up a bit.|
was a happy girl this morning... at about 4am. Dad was up until
2:30am painting the bathroom, so he wasn't going to be any help
with Baire... Mom was up, heard Claire gagging some and checked
on her. Mom didn't want to spend the next 20 minutes cleaning
up the peanut and her bedding, so she put Claire's little arm
band-thingies on her. They are like arm bands that fit at her
elbow to keep her elbow from bending. The only real problem,
well two real problems, is that Claire can often move them, and
move them enough that she can bend her elbow, so they don't always
work well. One trick mom has found it to put it over her hand...
and just enough that she can't stick all her fingers down her
throat. Claire doesn't really mean to gag herself, she is just
probably reaching down to get the gunk she feels in her throat
and trying to get it out with her hand is no small task. Needless
to say, the bands were finally position in a way that Claire
could get to her thumb, just not her whole hand... and certainly
the hand, and the bedding, can appreciate that.
In the morning, she was all smiles for her dad. He got her up and changed and gave her her meds as mom was running in her usual late-mode on a Monday. Mom peeked in on dad and Claire on the bed and she was all grins and squeals as they sat and watched tv together, Claire was cradled on one of dad's arms. It was very cute. Mom thought if either of them would sit still for it, she'd take a pix, but knew that it wouldn't go smoothly if she tried, so she didn't... and she needed to focus on getting out of the house this morning, Claire was sure ready.
was having a pretty good day today. She did well for mass, kept
her food down and didn't gag once all morning and took a long
nap after mass and after her lunch.
Later in the evening, she threw up once - close to 5pm. Mom is thinking it is that nasty congestion again, cleaned everything up, fed the peanut again (holding her breath that Claire would keep it down.) Claire kept it down the rest of the night. Mom fed her even less for dinner, but gave her her bottle with pedialyte (apple flavor) and duocal and miralax. She gulped that down, got her med, brushed teeth and off to bed. Mom followed. No signs of seizures, not lately anyway.
wasn't having such a good day. She and her family were going
to visit friends and everyone was packed and ready to go with
bags by the door. Claire had thrown up that morning... mom was
a little hesitant about going and mentioned to Claire's dad that
they needed to step back and look over the situation. They had
planned to leave at noon, but mom thought they should observe
Claire a bit longer to see if she was going to throw up again.
Surely they didn't want to visit friends with a child who was
ill in any way, and they didn't want to expose Claire to new
germs if her system was already fighting something... not to
mention the drive there, with a child who might throw up in the
car... not fun. Mom suggested giving her another meal and waiting
to see how she did. Mom gave her some cola in case it was just
gunk and cola usually eats that stuff up. <sorry for that image>.
By about 2:30pm Claire threw up again and Mom had to make the call that they wouldn't be coming for a visit to friends. Everyone was dissappointed, but the decision had to be made... and it was the right one.
Claire of course is her perky fun little self. Sleeping much of the afternoon into the evening, she was in the tv room with everyone around, and sleeping through it all. Tired Baire, fighting something.
Around 3pm, Claire had a little fever, 99.6 (under arm, so add one degree - not really enough for fever reducing meds) and by 4:30, she was sweating it off, as if her little body fought it off.
Mom gave her an early dinner, and then Claire got pedialyte with cal and miralax added just before bed. She slept great.
was pretty tired this morning. Mom thinks something odd is going
on with her. After noticing a few 'zone-out' episodes lately,
Claire also gagged on the way to school (as mom was going down
the interstate, in a construction zone -- she pretty much decided
Claire would be a mess before she got off the interstate). Claire
kept it all down - thankfully. Mom had put the window down (thank
goodness for electric windows) and the wind in Claire's face
eventually distracted her.
Mom mentioned to the teachers and even posted her phone numbers on Claire's sign in sheet, so the teachers would have them readily available, tho they likely wouldn't call mom without having a nurse look her over first. Since it is Friday, chances are at their best that a problem will arise, tho late in the day they improve even more.
So mom is on the lookout for seizures... the gagging and zoning-out are pretty good signs something is on the horizon. If she shows seizures over the weekend, the family will likely be taking Claire to the hospital. Hopefully mom is just imaginging things... yea... imagination can be a bad thing too...
the start of a new month... one where the kids go back to school
and the family gets some sort of routing back in their lives!
Claire had a big day... she ate great and mom put her down for a nap, but she didn't take one. She was up later for a bath and off to PT where her standing is greatly improved and she was all grins in the net swing... even with her thumb in her mouth. Speaking of which, she went to the dentist shortly afterwards and was told that that thumb is going to cause some big problems... including a noticeably loose tooth in the front on the top... and it is too early for the peanut to be losing teeth, so mom has concerns there. Her teeth are very crowded and her dentist mentioned that they were firm (no cavities) and looked generally very good. Yeah!
Claire's been eating well - also a good thing. She's enjoying about 3 meals a day, but they are pretty big meals. Mom gave her some fluids before bedtime... pedialyte apple flavor with duocal and miralax... covering all the bases.
In the evening, mom was watching tv with the kids when dad mentioned a bridge collapse in Minnesota. The tv footage was atrocious! Like nothing the family had ever seen, or would want to see again. Our hearts go out to those families... and our prayers as well.
|July 31||Claire was in school today, but she didn't eat much... just slept a lot. Mom needs to figure out what is up with that.|
|July 29||Nice relaxing weekend... Claire was very figity in mass, so mom sat her in her lap and Claire was content sitting up like everyone else. Mom caught a nap later in the day while Claire was napping and it was a good 'catch up' for them both.|
|July 27||Claire had a good day, mom got her deadline met (plus/minus one hour) and she was relieved over all that! Probably should have gone home early, but wants to save some leave for when Claire is out of school in a couple weeks. Not to mention she just got back from a long family vacation. Whew... it will still be a few days needed to recover from all that. She still has pix in the camera she hasn't downloaded... much less captioned.|
slept in today. Her mom thought she had a dentist appt, but called
to confirm and was mistaken. Dad was going to take her, and opted
to just keep her home all day. He had her up and fed and likely
off to school.
Mom had a relatively frantic day at work as so much had piled up during the week and now she was making up for lost time, not to mention two people are out in her office so she and another woman have a big deadline tomorrow. It is doable, hopefully in a timely manner.
family arrived home about 12:30am. Exhausted, as expected. The
sibs had been sleeping for hours, but no Claire, she was awake
and having a good ol' time. Once home, she got a diapey change
and off to bed.
Claire had a nice day home with mom and sibs. She was up and had a bath, then breakfast and off to PT. She was 'rocking' - backand forth, something she just started doing, and her therapist mentioned that she wasn't getting enough 'spatial' stimulation... mentioned that she needed to swing, etc.
She had an infant swing when she was tiny, but the family gave that away as she outgrew it. Now they will look into another swing for her. The PT mentioned that sometimes kids don't get enough vestibular stimulation and they tend to do to things that are sometimes considered socially unacceptable (like rocking).
Once home from PT, Claire was fast asleep, and slept for a few hours before she was up and hungry again. Dad fixed dinner, mom requested home cooking for a change... lemon chicken was on the menu... yum!
Dad went to play basketball with friends and Claire's big brother went as well. Mom and the grrls layed on mom's bed and watched TVLand, showing Andy Griffith, mom's favorite, until 8pm, when everyone went to bed... mom was exhausted.
day of traveling for everyone. Dad took Claire's sister to the
pool for a quick swim -- swimming in a hotel pool is tops on
her list. Then packing and on the road after a late breakfast
and coffee for mom.
The family was still in Virginia and probably should have made their way to at least N. Carolina before now, so mom determined it would be a marathon drive back home. Dad was fine with the idea -- if they made many stops, it would be hours past midnight and by staying at a hotel one more night, it would be late the next day before they got home. The marathon day took about 11 hours, but stopping for breakfast, lunch, ice cream and dinner. Claire ate at the stops too and got a diapey changes and a stretches, she did great! Mom got the GPS on the laptop working and that was fun to watch the progress, altitude, speed, etc.
family was up and packing... getting ready to leave DC and head
home. They had lunch with
two wonderful women that mom admires immensely. They work with
the trisomy18support.org group
helping families get through the rollercoaster ride that comes
with learning your child has T18 and trying to live with it.
They were a great resource for Claire's family as they learned
about Claire's diagnosis before she was born and the support
was immense. No one can give support until they've experienced
it, and these ladies, and the community on the site, surely have.
Lunch was great as mom was filled in on the plans for upcoming
events and fundraisers and Claire was held much of the time and
After lunch, the family was on the road once more, heading south. They had a planned stop in Charlotte, NC, but that was changed as they wouldn't get in until late and didn't want to impose on friends that late at night. They ended up in Lynchburg, VA. One of the bigger cities around... a Cracker Barrel and a Starbucks - yeah! The hotel they chose (as they were parked in a lot that had free wireless) was a Radisson - and they called ahead there were rooms available, but when they got there it was a Kirkley, evidently bought out the Radisson. Beautiful place, only there were no cars in the parking lot when the family arrived. Bewildered, they drove around and saw all the cars... evidently the front lot was closed due to paving or something. The hotel had an indoor swimming pool, and was the least expensive of all the hotels the family had visited on this trip, $79/night.
The kids were excited to be at a hotel with a pool and mom and dad were happy with their great hotel find. It was KFC for dinner (mashed potato bowls - another fav of mom) and then off to bed for the kids. Mom had wireless in the room, so she opted to catch up on email and send out a few photos... then off to sleep.
|July 22||Dad was up early jogging around the Capitol and then stopped at the holocaust museum. He showed up with cereal for the kids' breakfast and mom and the kids were getting out of bed and getting ready for the day, around 10am. They were off by noon, meeting friends at Arlington cemetery. They spent much of the day there, seeing the many many graves, JFK's and Bobby Kennedy's as well as the Unknown Soldier. They also got to see the changing of the guard, tho the second time they saw it, Claire decided to wake up and cry. Of course, Claire rarely cries, so mom had to push her in stroller around to the other side of the monument hoping folks wouldn't be too upset that the solemn moment was disrupted. After Arlington, the family went to see the WWII memorial via the Washington Monument. Afterwards, they saw Lincoln monument and Korean and Vietnam War memorials and then TDR's memorial. Around the basin to Jefferson Memorial and then home on the metro (which comes with its usual problems for the metro-challenged family). Once home, they stopped at the desk and found out there was an Italian place who delivered. After eating subs and pizza, the family stayed in for the night. Dad was achy, his back was bothering him from all the walking, but everyone did really well with all the walking they did today.|
was up early jogging and came back to the hotel to get everyone
ready for the first big day at DC. He mentioned that he acquired
tickets to tour the White House Rose Garden. That got mom's eyes
open. They had one hour to get up and get there. They were running
late of course and on the way, dad mentioned that they really
just had to get there by 4pm... it was 11am. The garden was beautiful
and mom asked a man to take a family pix for her... he took one,
and she decided that the family was in the shade and it wasn't
a good pix, so they took another... about 4 pix later, mom looked
at the pix and noticed Claire's little sis wasn't in any of them...
she was cut out of the pix, so mom kindly thanked the man, and
she took matters into her own hand setting up the self timer
on the camera, balancing it on the camera bag on Claire's Kimba
stroller and setting the timer, then jumping into the pix. Meanwhile
one of the secret service guys was watching the whole thing...
it probably added some entertainment to his day. They did get
another nice shot of the family in front of the White house,
with the lawn behind them. Fingers crossed the pix come out well,
if they do, it may be on the front of the Christmas cards.
After the garden, the family walked towards the aquarium and stopped for a hotdog and juice, then at the aquarium, mom and dad noticed there was a charge, and that it was under renovation. Dad asked mom if it was something they wanted to pay for (as they assumed all the museum-type attractions were free)... mom said she didn't know if it was worth it, but that they should ask someone. The lady coming out heard them, she had two kids. She said it was just a small little circle and then it was over. Mom and dad decided to visit another museum and as they were leaving heard another family say it wasn't worth the time.
So the family went off to walk along the mall, then take a short break on a park bench. The weather was gorgeous, it would have been harder to ask for a nicer day and probably in the upper 70's in the shade around noon. Claire's sister had saved some bread from her hot dog and still had it in her hand in hopes of feeding a bird out of her hands. The birds were very friendly, and they would come within a foot or so of the benches.... but she was unable to get close enough.
Wandering from the mall, the family passed the museum of American History, sadly it was closed for renovations, and then over to the museum of Natural History... a real favorite. They had a great mammal exhibit and of course the dinosaurs... on the second level some of the exhibits were closed, but the gems and stones were beautiful, unfortunately, the family was breezing through, so mom didn't quite get to see all of the stones. At the end of the gems exhibit was the Hope Diamond. Dad wanted to see that, but was disappointed, expecting something bigger. Mom thinks because it is on a necklace it looks fake, and it would be more impressive if it were just by itself (the other gems on the necklace take away from it) but Dad just expected it to be much much bigger. A bit of a disappointment for him.
From there they got another drink, and then to National Archives where they went in the out door and were able to go through the check in line because of Claire. Then they saw the exhibits and were looking for the Declaration (the kids had seen the movie National Treasure and were pretty excited about being there - but noted in the movie that the Dec of Ind was by itself, whereas in the National Archives,it shared a room with the Constitution and the Bill of Rights. Mom was a bit disappointed that people were so crowded around the documents, but still very excited to be in the same room.
Later, the family went to see friends in a campground in MD, just north of DC. They had a nice time and it was so cold that mom wore a sweatshirt the entire evening, and was still a bit chilly. Getting back wasn't too smooth, but the family did stay on interstates until Penn Ave off I-295, missed the turn, turned off the next exit which was questionable and got back on going north back to Penn ave... then didn't have any problems from there... well, not really.
Mom was happy to have her computer to see the maps and zoom on and out where needed. Dad also got a converter so she could plug in to recharge when needed. There is a GPS device that comes with it, but the driver doesn't want to install, and she didn't even try installing it (or have time) until the trip, in the car, so needless to say she has done without it.
Everyone was tired, and Claire had gotten hungry... mom had fed her before they left and took food, but they really weren't at the campground for long, so mom topped her off with food when they got home, diapy change, clothes change into her pjs, meds, tooth brushing and off to bed for the peanut, and the peanut's mom.
the family was up early to watch the Early Show as they were
broadcasting from Battery Park in Charleston. The park was just
too far for the family to walk, but not being sure how parking
would be, or crowds, they opted to watch it on tv and tell stories
of how they were down there watching Hootie and the Blowfish
(who where singing much of the morning) who are evidently from
Charleston. The family packed up and tried to get an early start
driving to DC, which took much of the day, partly from stopping
to eat and then there was Claire's throwing up all over herself
and the carseat. Mom got out the roll of papertowels and cleaned
it up, then put some bottled water on the papertowels, cleaned
more, then got out the wet wipes and did one last 'polish'. Meanwhile,
dad changed Claire and cleaned her up as best as he could (he
did a great job) and mom ran into a gas station to rinse the
bib and blanket that took the worst of the 'yuk'... Typically,
when you go into a gas station rest room, they are small, so
it was a little surprising for mom to see a couple other families
in there, at a time when she was hoping to be discrete. Needless
to say, no one wanted to use the sink... much less be in the
bathroom... Mom did her cleaning and out the door she went, the
family was back on the road shortly afterwards.
It took much of the day, but when the family arrived off the interstate, they saw the Pentagon, and off in the distance was the U.S. Capitol. Very cool! They found the hotel and dumped everything off. Dad noted that they needed milk, and everyone would go, so on with the walking shoes...they passed up the milk for sight-seeing and everything was so beautiful at night! They saw the White House all lit up, and they saw the Washington Memorial... most impressive. All the buildings were very rich in architect and interesting to look at.
On the way back to the hotel, they picked up milk and water, a few people where sketchy in that store, but overall the family wasn't concerned. Mom has never been a big fan of big cities.
|July 19||The family was excited to be in Charleston, SC. They were up getting the kids ready for the big day of touring. They went to book a carriage ride and that was neat. So many old houses, they all face to the side so they can have big porches, mom thought that was odd. Claire did great, She sat on dad's lap for a while, then strattled on mom's lap while she still managed to take pix of the beautiful homes. Mom splashed a little bottled water on her face, lets and arms every once in a while and she stayed cool and happy. Charleston was Hot. Then off to the battleship tour, the Yorktown. It was hot there, but the breeze was strong, esp on the flight deck. Mom and dad took turns touring with the kids while the other hung out with Claire... she was grins much of the time, esp when the breeze blew onto her face... more like a wind actually. Overall she did great touring today. The family headed back to the hotel and went for a swim in the pool before ordering Dominos pizza. Dad and big brother went to the fitness room while waiting on the pizza and mom and big sis took showers and got cleaned up and watched tv. Claire ate and took a late-day nap. The family had a nice relaxing evening eating pizza and went to bed.|
|July 18||Crazy day, packing up the family and heading north to Charleston, our pitstop before Washington DC. Dad wants to go, mom is hesitant, but excited at the same time. The family was on the road, making frequent stops including making sandwiches and eating chips and juice, yogurt and fruit along the way. The family arrived in Charleston late in the evening. Unloaded stuff at the hotel room and was off sight-seeing. A storm looked like it was coming in, but really was just going around the city. The lightening was specatcular and with the clouds overhead it got dark outside sooner. The family scoped out the city and then stopped for Bbq dinner. It was yummy. The family headed back, it was very hot out and they were happy to be back in the air conditioning, esp Claire.|
was up checking on Claire at 3am or so, Claire was loud again
and sounded like she was gagging, but seemed fine, so mom covered
her with a blanket and back to bed. Mom seemed to have had a
good night sleep and treated herself to a cup of Starbucks in
the morning after taking Claire to daycare... and she was back
to her old 'highly motivated' self.
Claire is fired up as she plans her trip to DC. Mom and dad are scrambling to tie up loose ends and plan meals and itinerary... the older kids don't really know what to think... they've been informed that there will be alot of walking planned. Claire wants to meet the president, but evidently, it takes 2 weeks to do a background check on her, and she won't be giving them that kind of notice. She's quite the spontaneous child, and when she is ready to travel, no one gets much notice. She also wants to visit Charleston and is making dad use his 'miles' to book a nice room in the historic district... she can be quite demanding at times, but he doesn't mind and seems pretty excited about going too.
Claire didn't sleep much at all last night. She was just so noisy and seemed to be in a good mood, but random squeals. Mom was in there about once very hour to see Claire and and she was happy to be seen. Around 3am, mom noticed a stench and evidently Claire had thrown up a bit... so mom got Claire a bath ready, stripped her down, put her in a warm bath with the lights dimmed and washed her up. Got her out, dressed and blew her hair dry. Put her in the dimly lit kitchen in her bumbo as she was smiling the whole time... then mom was off to change the sheets and she turned on the lights in the nusery, changed the sheets, turned them off and got Claire out of her bumbo in the kitchen and bundled her up and put her to bed. whew.
Mom is ready for an early night tonight. She woke Claire this morning and the peanut fell asleep on the way to school... gee, wonder why?
When mom got home in the evening, Claire was zonked. Mom opted to take a nap with the kids... everyone piled on mom's bed for a late nap. Afterwards, it was dinner and then mom and big brother were out the door looking for walking shoes for mom and jeans for big brother. They ended up out until late, but got what they needed and home. Dad took over Claire duty at mom's request earlier in the day, and once home, mom played with Claire for a bit... got in her snuggles, or as a friend calls it, Clairapy, then mom was off to bed while dad topped off the Claire with food, meds and off to bed.
|July 15||Claire had a nice weekend. She went to mass and looked adorable with her curly hair and cute dress. She was well behaved and mom and dad passed her back and forth. Afterwards, the family went home and dad did yardwork while mom got some work done for work - probably not the best thing to do on a Sunday, but it was kind a fun anyway.|
|July 14||Busy day for Claire and her family as big sis was celebrating her birthday at her uncle's pool with friends. Claire visited with mom much of the morning as mom, dad and sibs cut and cooked food for the party. Claire slept and visited much of the rest of the day with family and friends. She ate well and enjoyed the party.|
the 13th.... not too bad so far.
Claire was up at 2am... squealing. Finally mom decided to check in on her and you've never seen a happier kid! She was lying on her back with her legs all stretched (mom needs to get a pix one morning - but typically the last thing she thinks about)... and still squealing with excitement and happiness... mom wrapped her up in a blanket, lowered the fan speed and put her on her tummy and went back to bed only to stay awake until the squealin' toddler quieted down. Shortly after mom got to sleep, big sis decided she couldn't sleep... noises... and woke mom and dad. No rest for the weary.
The kids made it to camp at a reasonable time in the morning and mom to work. Mom has been enjoying iced coffee in the mornings. She makes it extra-strength and throws in ice, which melts (thus needed the extra strength) and it is perfect with xtra cream and sugar. Yum. She even made it a few days ago and kept it in the fridge... thinking about running it through the blender if time permits... but time never permits for such luxuries. ;o)
|July 12||Mom picked the kids up from camp only to find that big sis was sunburned... thankfully not painfully so, or at least she didn't complain. Probably that rebellous nature as mom kept telling her it would hurt, so she'd rather keep quiet than prove mom right. Mom picked Claire up and her feed were freezing cold. Mom mentioned it to one of the afterschool teachers, and she went to put socks on, but mom insisted that it was scortching hot out, so no need for Claire to have socks as she would certainly warm up in the car on the trip home.|
Claire had a fun day. She woke up, ate a big meal, fell back to sleep once she took her last bite. Mom put her back to bed, got some work done. Skipped Claire's bath, as her sleep seemed more important and woke her at the last minute for PT. She had a good day, only 30 minutes, but a good 30! Her therapist gave her some good stretches and let mom see what how well Claire did and told her what was normal. Claire was normal for much of it, ankles, hamstrings, etc. At home, she ate more and had her bath, then she was tired, so back to sleep for a bit. Up in the evening and then back to sleep by 6pm or so, when friends of the kids came over. Mom watch them and they had dinner and dessert together. Tv and basketball.. then hide and seek... big fun of course. Mom's friend came by to get her boys and they had a nice long talk... always fun. It seems obvious to mom that she needs to get the 'grrls' together for a girls night. Maybe on Thursdays.... planting the seeds here for thought.
|25 26 27 28 29 30 31 32 33 34 35 36|
|37 38 39 40 41 42 43 44 45 46 47 48|
|guestbook||49 50 51 52 53 54 55 56 57 58 59 60||Current Year|