Claire's Journal -- 32th Month
November 10

Mom went to work today, and 2 hours later went back home, she's coming down with something and wanted to catch it early. Tomorrow is a holiday so maybe the long weekend will allow her to get some much needed rest. Fingers crossed.

November 9

Claire had PT today, OT cancelled. She worked well giving lots of nice smiles and really enjoying her therapy today. Worked on sitting and propping on her knees and did really well, her PT was very pleased with the progress she is making with sitting and using her arms to keep herself upright.

November 8

Claire's school had their fall festival tonight.
Mom made food for the bake sale and the kids seemed to have a good time.

November 7

Claire slept through the night, fussing once but going back to sleep. Mom heard her cough and went in to turn off the ceiling fan and she was quiet the rest of the night/morning.
Mom woke her gently and got her up. Claire had a gunky nose as she's had the past few mornings. She was cleaned up and changed, had her meds and slurped down 5oz of formula flavored with bananas from her haberman. It took her a good while to put it all down, and mom was growing a bit impatient, but knew the last oz was always the quickest.
Claire was off to daycare, munching on her hand the entire way as if she hadn't been fed in days... and oh the drool. Mom thinks she's growing and eating more... or teeth... when the fingers go in (and sometimes most of the hand) the drool starts and the little peanut gets her rash back on her cheeks. Right now it is most noticeable and has been there for weeks. Mom is still pondering that little dilema.

November 6

Claire slept well and was up with dad as mom took the sibs off to 8am mass. They were all up and decided to just go early and get back early. Dad had a busy day planned, so he opted to work while home with Claire... but work meant giving her meds, spending time trying to find out where mom now keeps the syringe to measure the meds, find the bulb syringe to clean out the little Peanut's nose, making food and feeding her, etc. Claire kept him busy and mom got an earful about how she moved stuff from where they usually were... so mom insisted he needed to give her meds more often and all that. .. then she laughed.
In the afternoon, took her nap along with her sister and mom. Then she was up and eating, and in her Johnny Jump Up, which she seemed to like for a little while, then she fell asleep in it. Mom had her laptop on the floor and was answering emails for awhile while proclaiming Claire's wonderfull progress with er J-Jup! Claire wasn't amused, and dad was bewildered when he walked in and saw mom on the floor with her laptop... then he saw Claire next to her in the doorway.
Mom worked on some goodies for the bake sale for Claire's school this week. She made a double batch of her near-famous choc chip cookies (with coconut) and will package them up tomorrow for school. When the last batch was done and she was off the phone with friends, Claire got her last bit of meds and more formula (flavored with bananas) and snuggled with mom for a bit before hitting the hay... around 9:30pm.
Dad put the ceiling fan on for Claire as she was sweating and mom opted NOT to put the blanket on her and keep her a little cooler tonight (she had long pands and socks on) to see if it would help her rash on her cheeks.

November 5

Claire slept pretty well. Mom had her up fairly early as they had a flag football game to get to, but she needed a bath first. At the game, Claire hung out with her aunt and drank 5os of formula (flavored with bananas) -- slurped it right down! Afterwards, Claire worked on some chicken and sweet potatoes. Family came over everyone left for the football game, leaving Claire and her big sis with a terrific babysitter. They seemed to have a good time, Claire polished off about 10oz while mom was gone, and then more when they got home.
Claire's appetite seems to be immense and mom isn't sure if she is really hungry all the time, or just has an oral fixation that her hands seem to try to quench. Either way, mom is constantly offering that child food and sometimes she eats a ton, and sometimes she just needs a nibble, and then on revisiting the food moments later, she seems hungry. Everyone had a long day, and were in bed close to 9:30pm, all except dad who fell asleep in bed trying to watch Miami and VA Tech game. He tried, but again, it was a long day, and mom woke up with the game on and dad 'out like a light' so she turned off the tv and all was right with the world.

November 4

It was going to be a long day as mom didn't have a sitter lined up for the kids' school auction/fundraiser tonight. Mom and dad had never been so it was something they were looking forward to, bought the tickets and all, but mom was bummed.
Mom had a busy day as she wanted to support Claire's school and knew they were gathering items for raffle-ing... so she went and bought some items and who did she see, just one of the sitters she was trying to contact for babysitting tonight. And she said she could do it! Mom was happy, Dad was happy.
Mom dropped off the items for the baskets. She picked up Claire later, who seemed to have a good day and ate well. In the evening, mom and dad were off for a night with friends and mom even bid on a groundskeeping service and won. She got it for just over half price so she was happy about that.

November 3

Mom had a busy day at work and Claire had a good day at school. Her eating has picked up immensely as has her appetitie and mom is very pleased.

November 2

Claire slept great and got up and ate well, then back for a morning nap and up again in time to eat a bunch more food before PT and OT. She was all smiles and worked hard for PT and ate hard for OT too! She spewed (spitted) back some food at her therapist, but overall ate and ate well and fairly quickly. Mom was pleased with all the progress she's been making at her PT and OT sessions. Mom heard that once Claire turns 3, the system changes for her, and getting therapy will become very difficult and it is a scary thought to think that Claire may not have the opportunities, maybe even digress once she turns 3. sad.

November 1

Claire slept through the night, fussing a couple times, but not enough to keep her awake for more than 30 seconds. She was up bright and early and ready to eat. She took her meds well and needed a bath, but that would have to wait until evening. She drank 3oz of formula/bananas and then off to school with grins. Mom kept reminding her that she couldn't smile AND eat at the same time, her brother just laughed, and she didn't care for eating as much as for smiling this morning. Guess she was thinking about how cute she looked last night in her Clairebug costume.
Mom noticed Claire's picture on the TRIS website. The project is worthwhile, because, among other things, it gathers data about Rare Syndromes (like Claire's) and allows medical professionals to have updated information. Much of the information mom recieved when she was expecting Claire was pretty old and outdated, probably one reason why Claire outlived the dr's low expectations. She's a famous grrl, and will likely have her pix there for the month of November.

October 31

Happy Halloween everyone!
Claire slept through the night, doesn't have green snot on her nose in the morning and hardly even snored. She's not eating great, but that will come in time, and is mood dependent with that little peanut.
She was off bright and early for school today, in plenty of time for breakfast. She had 2oz of fluids this morning. Mom is out of pedialyte, so she mixed water with some banana/strawberry bb food.
Claire had a good day at school, eating 12 oz of food and then before she could have more, mom picked her up. Dad brought the sibs home early too as there were pumpkins to carve and costumes to put on. The kids had dinner and big sis had her bath. Claire ate 4oz of sweet potatoes and chicken, then put on her costume and off to the big halloween party at a friends home. It was big fun for all, big brother was off with friends and sis had her share of trick or treating just before plopping herself down in front of Nickelodeon with her friends. Mom fed Claire another 4oz of formula/bananas (mostly formula) while watching the treaters and guessing costumes and later fixed more for her just before leaving. Mom was VERY impressed as Claire was drinking very well from her haberman bottle tonight, like she hadn't done in months, and she was able to get some good fluids in her... YEAH!! Dad was having fun socializing and it was big fun for all. The family was home by 8:30pm and off to bed.

October 30

Claire slept great last night.
Everyone was up early and had plenty of time to get ready for church, it was a packed house this morning. Claire was a dear, smiling off and on at her grandma and going from fuss to smile in 30 seconds which made her grandma laugh out loud in church. A woman behind the family mentioned that that baby looked very loved. Claire still has a nasty rash on her face, mom worked much of the week to keep it clean and hope it would clear up, but it just moved from one side to the other and seemed to get worse. ho hum.
The family went to breakfast after church, and then said goodbyes to grandma and grandpa. Mom and big sister took a nap while dad gave Claire her meds, fed her lunch and put her down for a nap on his way out the door to sell more homes. Go Dad! Mom was up and making dinner before dad got home and family came over to eat, after dinner mom baked cookies for big sister's Halloween party for her class and hung out with Claire for a bit filling her with hugs and kisses before bedtime. Claire drank an oz or two of watered down bananas to get some last minute fluids. Mom and Claire were in bed after 11pm.

October 29

Claire slept great, was up once and fussed but evidently dad went in to check on her, he resituated her and she went back to sleep. Her aunt was sleeping in the room with her and said that Claire had a nice snore. :o)
The gang left around 1 for gameday festivities and Claire and big sister hung out with the sitter. In the evening, family gathered for spaghetti dinner and then straight to bed as the weekend was already exhausting. Maybe we need a weekend after our weekend to recover from our weekend?

October 28

Claire is sleeping well. Family coming into town today so mom took off half-day to get some cleaning and grocery shopping done. Later in the evening, big brother got ready for his middle school Halloween dance and dad left to go sing at a Halloween costume party. Mom went as a queen and dad as her knight. The party was to benefit Big Bend Hospice and everyone had a terrific time. Some of the costume prizes were trips to Disney (1 day pass for 4 people) and Bush Gardens, among some other nice prizes. If you want to see a pix of mom an dad in costume, just email Claire and she'll get a copy to you!

October 27

Claire is sleeping well, her antib's seem to be kicking in and she's eating pretty well, tho not as well as mom likes. She's mom's little work-in-progress.

October 26

Claire had her followup dr appt today, after OT and PT (PT was cancelled as therapist was sick). A pretty good day, dr said she looked better and gave her another shot of antibiotic and put her on an oral antib.

October 25

Claire spent much of the night coughing and gagging so mom had enough. In the morning, they got an appt and in the afternoon went to the dr. She had a fever of 101+ (rectally) and he gave her an antib shot, noting that she was having a hard time keeping food down, so an oral antib wouldn't work so well. Mom was frustrated, as she just noticed Claire's was warm when they got to the waiting room at the drs office and didn't have any fever reducers. By the time the got home, and before giving Claire any tylenol or motin, mom took her temp and it was around 99, so mom didn't give Claire anything and was believed her body was doing what it needed to go get better on its own. Mom doesn't like giving Claire any extra meds if not absolutely necessary.
In the evening, Claire broke her fever and her coughing slowed up considerably, she was keeping food down and eating pretty well. Mom was excited!

October 24

Claire slept through the night. Mom too.
She was up when mom checked in on her and drank a couple oz of pedialyte when mom left her in dad's care. With the fevers yesterday, it was best to keep her home today. Mom called the ped to see if they wanted to see her today, or see how she did tonight.
Mom called Grandma today to see that everyone was fine during hurricane Wilma, and she said they were doing well, a few tornadoes spotted in town, but all was well. Here in town the weather was 68 when the family woke up and after the kids were off to school it went down to 58, should be in the 40's tonight, after hitting the record breaking 90's last Friday. If you don't like the weather here, just wait a day or so and it will be different.

October 23

Claire slept well at night and was up in the morning with 'startles' (mom thinks post seizures) and followed with throwing up... they went to church anyway, dad was apprehensive, but mom knew she'd just fall asleep during church, and Claire did. She slept the entire mass and visited a bit afterwards then home for food and nap. She developed a fever in the afternoon and even with motrin, they kept coming back. Mom thought that was unusual, so in the evening tried another bottle of motrin, and that dose got and kept the fever down much better. Claire and mom were up late as mom wanted to get that last bit of food in her before bedtime, Claire ate really well, but threw up some of it as mom was putting her down... around midnight.

October 22

Claire slept well and was up early. Mom was up too as Claire was fussing. She drank about 5oz of pedialyte and off they went to big brother's flag football game. Claire enjoyed the fresh air and slept much of the time there, then back home for a big feeding and much rest in her crib. Mom listened to college football on the radio and set up stats for big brother to look at as the game progressed. Claire's brother was listening to the game on the internet (streaming audio) and mom was in the bedroom feeding Claire listening to the radio. Mom's radio was about one minute faster than the Internet feed, so she told Big brother that the team scored and he didn't believe her... then was astounded (mom's a genius, but predicting a score before it happens?). Mom had fun with that one!!
In the evening, the family went to visit friends and the kids had a great time. Claire slept for much of the time, then woke up to eat a nice dinner and get her meds before it was time to leave. Dinner was great fun! The kids were exhausted and didn't get to bed until very late, mass will be a struggle for them in the morning.

October 21

For the second night in a row, Claire slept through the night without so much as a snore or a cough. Mom slept too, for the most part. Mom woke Claire and she drank 3oz of pedialyte and off to school for breakfast. She was happy, but hungry when she arrived and her teacher was getting her food ready as mom left.

October 20   Claire slept well through the night. She sleeps with the O2 blowby and the humidifier on -- no ceiling fan.
She had a good day, dad fed her in the morning after meeting with the countertop guy, and then mom took her to school. Dad picked her up later in the day for her RSV shots... she had two as is customary for the first shot of the season. She will continue to have one shot every month until March. Poor dear.
Mom hadn't realized that dad didn't take her back to school, and mom dropped in to pick her up only to find she wasn't there... mom didn't know what to do with herself... go shopping? heheheh. She went home.
Claire had a good evening, eating as soon as mom got her food ready (when she got home) and then taking a nice afternoon nap... tired Baire. Mom woke her for meds and tried to feed her more, but she refused so they cuddled for a bit watching some tv and then off to bed.
October 19

She ate well this morning and drank only an oz of pedialyte and when back to bed. Mom woke her to feed her more, and by noon she had close to 10oz, then off to therapy.
She had a good day trying out the new stander while mom took pix. Some pix are of a happy baby, some are of a not-so-happy baby. She did great with her weight bearing and with holding her head up. Mom and the therapist were very proud of her today. After PT, her OT got out some sweet potatoes and mixed it with rice/banana cereal and it was relatively thick (mom's request) and Claire ate all 2 1/2oz of it. She didn't cough once, or gag, or choke. Mom was proud of Claire and that the OT saw that she doesn't typically aspirate when she eats. She's getting to be a good eater, remember, mom fed her well before they even went to therapy.
Once home, mom offered her more food and she ate a little bit before her afternoon nap. Mom got more work done and the kids got home from school went to work on homework (those that brought it home). Big brother had an open book science test and was up until nearly 9pm getting his notes up to speed, while big sister forgot to bring home her math homework again (conveniently) and was banned from tv because of it, and a few other things.

October 17

Claire slept through the night. Mom was comforted by her snoring, but she seemed to be breathing well and not coughing or congested. Yeah.
Mom woke her in the morning as mom had a dr appt and Claire was coming along. They saw the OB who saw mom throughout her pregnancy with Claire. He walked in and saw Claire (first time in over 2 years) and couldn't keep his eyes off her. She was snoozin, and he had many questions about her... but mostly said over and over, 'amazing! -- absolutely amazing!'. It was neat.
Mom got a clean bill of health (yeah) and off they went to see the tech that showed mom ultrasounds of Claire back when she was prenatal. Mom will never forget how wonderful she was to them. She cried with mom on several occasions, and even took a few extra pix of Claire from the u/s so mom could have a few more memories and pix of Claire while she was till thriving. What a special lady. She was even a hospice voluteer who was assigned to give mom some respite and take care of Claire. Luckily mom didn't need her and then Claire graduated soon afterwards. It was a nice visit. There are no midwives working at that dr's office anymore, so mom couldn't see the one that delivered Claire (her godmother) but hopefully they will catch up with each other soon. Mom took Claire to daycare, got to work and signed out for much of the morning. As she arrived, her alarm went off reminding her that Claire had PT. She called dad and he was hesitant as he had a lot of work to do this morning, but said he would take Claire all the same. He's a daddy first. Mom had a lot of work to do today and didn't want to take off more time.

October 16

Claire was up coughing again. Mom was okay with it as she was getting used to missing her good sleep.
They both were back to sleep soon afterwards and then up for mass later. Mom was exhausted.
The girls all took naps in the middle of the day and then got up so late it was nearly time for dinner, so dad picked up some wings for dinner. Late in the evening, dad was lining shelves and restocking the pantry as the family had been living out of bins while awaiting new kitchen cabinets.

October 15

Claire was up coughing again... but all were in bed soon afterwards. Making sure she is warm and the air is moist.
The family was up early for big brother's flag football game. Even his cousin was coming along to the game. The weather was gorgeous, mom loaned her a sweatshirt so she's be warm and off they went with fresh muffins and coffee (and juice boxes). Claire's brother won his game, so he was pretty happy, but later said goodbye to cuz and she was off to go back home, hopefully coming back up soon for another visit with her fiance... yeah! In the evening, the favored football team lost the big game this weekend and the family was a little down, but hey, win some and lose some. Mom was wired and couldn't sleep, so she had a couple oz of wine (since Claire, everything is pretty much measured in Claire oz).

October 14

Claire was up in the middle of the night coughing again. Mom put a blanket back on her and she went back to sleep.
She was up this morning talking and talking. Mom went and got her and put her next to dad while she got ready. Mom fixed some pedialyte so he could feed her a bit after her meds. Soon afterwards dad was giving Claire a bath and getting her ready for school while mom finished getting dressed and starting a pot of chilli in the crockpot for dinner tonight. yum.
The kids schools has a teacher planning day, so they are off, but Claire had a spot reserved for her at her school today. Dad is home with the kids and doing some painting in the kitchen.

October 13

Claire was up around 4am, coughing. Mom tried to feed her a little bit thinking maybe she was hungry and wanting her hands, but she wasn't interested in eating. After a couple bites, mom put her back to bed and covered her back and eventually she stopped coughing and they both got back to sleep.
In the morning, Claire was up but not making a peep. Mom went to check in on her and she rolled over and looked up... sweet pea. Mom had her food ready and Claire drank 4oz of pedialyte and 2-3 oz of food.
Claire coughed up a bunch of phlem, along with much of her food (about 4oz of food).
Mom fed her another 3oz of pedialyte and then off to daycare. Claire was a little warm, mom took her temp and it was 99.1 under her arm. Pretty low grade. When they got to daycare, mom put Claire in her crib. She seemed a bit lethargic and mom knew it was close to her naptime. Little peanut is certainly under the weather. Mom thinks getting more pedialyte in her will help her considerably, along with chest compressions, and probably start nebulizer treatments tonight.
Mom and Claire were under the weather, mom took off early as she was in a fog all afternoon, got Claire from daycare and they went home and went straight to bed. Claire went to sleep immediately and mom did soon after too. In the evening, Mom fed Claire a nice big dinner and plenty of fluids. Claire still has her loose cough and mom is hoping that will go away soon.
Mom got a call from one of her cousins and is very excited that she is coming for a visit this weekend.

October 12

Claire was up around 2:30am. She was coughing her loose cough and mom went to check on her to see what she could do. Usually, Claire was on her back and mom just needed to put her on her side but Claire was on her side AND coughing. Something mom hadn't seen. The ceiling fan wasn't on, as the house was relatively cool, and often the fan dries her up. The humidifier was on and the O2 had water in it too. Mom decided to rub her back for a moment to let her know she was there, and then cover her with a blanket, especially on her back, to keep her warm, and mom went back to bed to listen in. A couple of coughs later, Claire was quiet and back to sleep - yeah.
She was up early and mom got her to drink 3oz of pedialyte and an oz or two of food before going back to sleep. She was a very tired baire.
Claire's PT went great. Her stander guy showed up with a stander. She tried it out and did amazingly well, starting on her tummy and then on her feet. She lifted her head a few times and her back seemed to straighten up some. The stander will be great for her. Mom is unsure if she wants to 'settle' for the first stander offered, or wait and try some of the more expensive ones.. but the stander guy is having a hard time getting those on loan for us to try, so it will put mom in a pickle, and she needs to get Claire started on standing fairly soon.
After PT was OT and Claire was biting down on everything put in her mouth. At one time her mouth started to bleed... not too sure why, but it seems to do that a lot lately.
After therapy, Mom and Claire went and got new haire-doos. They were happy girls when they left there and went and got Claire's sibs and then home to get more work done.
In the evening, Dad dropped off Claire's big bro for a baseball game, and mom followed soon behind with big sis and Claire. At the game, a teacher from Claire's school came up and introduced herself, that was neat. Claire is quite the socialite these days. Mom fed Claire as they watched the game and thought of some PT they could do at future games. The kids had hotdogs at the park (grilled on the barbieq) and then, after a close win, the gang went home to meet dad. He had to show a home during the game, and they wanted to write up a contract, so he needed to do that, then meet with a guy afterwards at home, so he was jumping.
Once home, the kids were in the tub then in bed asap. Fortunately, only a 1/2 day tomorrow, not much pressure for a great nights sleep.
Claire ate a tiny bit more at home, then off to bed.

October 11
31 months

Claire was up in the morning, around 4:30am, coughing. Sure enough she was on her back, so mom moved her around and they both went back to sleep.
Mom gave her a decongestant as she'd done the past 2 mornings and fixed a shake as they headed out the door. At school, the ladies added cereal to the shake and fed her (spoon) and she seemed to eat okay at school. Around lunchtime, mom got a call from the nurse that Claire seemed congested, and worse than yesterday, but that they would keep an eye on her. Mom suggested getting more fluids in her and knew she'd need to work on that tonight too.
Mom picked her up and she wasn't full of smiles, but not fussy either... just kinda sober. Home they went and Claire ate most of her 6oz of food and 2-3oz of pedialyte by bedtime. She had a nice bath and watched some tv with her big sister in the evening, joined the family for dinner, and started crying out of nowhere. Mom figured it could be teeth, as she'd just given her some mylacon moments ago. Once mom picked her up out of her kimba, Claire went quiet, almost happy. Mom held her through dinner and was pretty much done anyway, and Claire just hung out on mom's lap. Finishing up her food, she went to bed soon afterwards... close to 9:30pm.