Claire's Journal -- 26th Month
May 10


Claire slept through the night like a little dream... probaby because she was able to get her sock off her right hand (her favorite). Her hands are looking really good, not too much damage lately from all the thumbsucking and hand gnawing.
Dad is staying home with her today as her caregiver wanted the day off.
Dad did really well with Claire today and by the end of the day, mom came home and Claire wanted to keep eating and eating. She had nearly 32oz today mostly shake, but 4 1/2 oz of that was pedialyte. She's such a good baby... er... toddler.

May 9


Claire slept through the night. She had a good day today, and ready to go go go. She was up and kicking mom with her feet, mom will remember next time to put her shoes on last in the morning. Claire was off to daycare, and her PT appt late in the day. She had a good workout and was exhausted when she got home.
The family went to dinner in the evening, as they are still unpacking and getting back into routine from the weekend - Claire slept all through dinner... everyone is going to bed early tonight too, even little Baire.
Claire was fussing in the evening before bedtime, but overall she was able to quickly settle down and go to sleep.

May 8


Claire slept through the night ... she was pretty exhausted from her day before at Disney's Magic Kingdom and EPCOT. Mom let her sleep in as long as possible while they packed and prepared for the day at Animal Kingdom, also at Disney.
The family loaded up the truckster and headed over to AK and arrived at 10:30am. The park stayed open until 5pm, so by 4:30 they left and headed back on their long journey home... stopping for a Mother's Day feast at Wendy's.
They got home close to 8:30pm, and the kids bathed and went to bed.

We're here!!  ...and full of energy!!My friend CinderellaGot our bug eye's on!
"My Aunt and Snow White and Me!!"Sleeping Beauty, or Briar Rose, or Princess Aurora, she answers to them all!
Kisses from MickeyMickey and the kids
Alice, my friendClaire and her big SisEnjoying the steam boat ride
Talking to GrandmaMe and Princess JasmineGot to see Cinderella again!
Me and Pocahontas Me and the Little Mermaid, ArielChip and Dale are big fun!
Kickin back and takin a breakClaire ridin the monorailBig Brother pushing Claire around.
Claire on Safari Expedition -- looking for some elephants
May 7


Claire slept through the night like a little dream.
The family was up at the crack of dawn, maybe a little sooner. There was just way too much fun to be had, so mom was up before anyone (more excited than the kids perhaps) showering and then getting Claire ready for the long day ahead. Claire's big sis lost another tooth, and put it with the other one she lost a week ago, but still sharing with her 'public' as she feels everyone needs to see the tooth. Packing bags, setting up stroller/wheelchair for Claire and heading off to the park. It was faster to walk than to get to the monorail, so everyone strolled over, just about halfway realizing that mom forgot Claire's bottle (tho she had the refills) and later remembering she left the sling also in the hotel. After entering the gate, dad went back for the items, and the family took the train to the back of the park where they would begin their day and work their way to the front.
There were Princesses to pose with and Mickey was waiting anxiously to meet the kids. Later, dad and Claire's brother went off to see Adventureland and Frontierland, while the others did their thing, including grandma and grandpa taking Claire's sis to 'small world'. Grandpa was a real sport.
Later it was off to the Princess Luncheon in Epcot at Norway. The food wasn't what anyone was expecting, and extremely small portions (and expensive) but the princesses were gorgeous. Grandpa was especially impressed with Princess Jasmine, guess we will need to get the movie for him!
After Norway, the family go to see Crush in 'Turtle Talk'... a highlight for mom as the technology and entertainment was like no-other she'd seen there. Claire's sister was asked how old she was and at 5yo, Crush said she was 'just hatched', but he was quickly corrected that she, 'wasn't hatched, I came out of my mommy's tummy'... he wasn't too sure what to say to that... except lead into how turtles lay eggs in the sand, and warm sand produces girl turtles and cool sand produces boy turtles... thus 'cool chicks and hot dudes'... well, you had to be there.

From EPCOT it was back to the Magic Kingdom and more rides and dinner and total exhaustion hit mom so it was back to the hotel around 9:30pm... leaving dad with Claire's sibs to hit a few more rides in Adventureland before returning at 10pm. Everyone crashed and burned that night, esp Claire's sister who didn't notice the tooth fairy had come. She got two golden dollars, one for each tooth.

May 6


Claire slept through the night.
Mom was up getting ready for the kids' field day, and then some shopping and then some packing for Disney this weekend. Plans are to get out of town by 3pm, but they made it more like 4:30pm. Still not too bad.
Once on the road, everyone was a bit more relaxed as leaving town always seems to get a bit stressful. Dad had some things he needed to get done with work, and mom knew she would forget something... and sure enough, she forgot her little cans (8oz sizes) for Claire's WDW tour. She also forgot the shade for the stroller. Mom will wing it tho, starting with buying Claire a big floppy hat once they get into the gate.
The family arrived at WDW around 8 or 8:30pm and were greeted by grandma and grandpa and their aunt. It was a nice greeting and everyone relaxed, got a bite to eat and got to bed late in excitement of the big day tomorrow!

May 5


Claire slept through the night like a little dream. Mom realized why she probably fell asleep; her sock came off her hand and it was in her mouth. When mom woke her, she had a nasty rash around her mouth. Likely from drooling. Mom washed her face (patting it gently) and got her ready for school... then mom was off to work.

May 4


Dad was up with Claire until who knows when. Dad was tired in the morning, and so was Claire. Mom let her sleep in a bit, but not dad.
Mom took Claire to daycare in the morning while she went to a meeting. When she picked up Claire, she'd gotten a call from hospice nurse helping her decide what to do when she feels Claire has a bad bottle of meds from the pharm... what is the protocol here. Maybe look for a new pharm, someone who's been in the business for a long time... someone who knows the med Claire gets, the correct color, etc. When mom got off the phone, she discussed it with Claire's caregiver, and she knew just what mom was talking about as mom measures the dosage for Claire's afternoon meds and sends the dosage for her caregiver to give her each day. Claire's caregiver knows how the meds separates and understands the different consistencies that mom talks about... she knew just what mom was saying and gave mom some credibility. She has also seen Claire have seizures, and knows how scary it is and understands how mom will do everything in her power to keep Claire seizure free... even if the pharmacist looks at her like she's lost her mind... and they've done that a few times.
Claire had a wonderfully uneventful day. She went to PT, where she sat very nicely for seconds at a time. She wants so badly to be a 'big grrl' so she is working very hard to do things that the big kids do.
In OT she had a good time, full of smiles for her therapist and working hard.
In the evening, she had a nice big nap so mom got a lot of work done. Claire's music therapist called to say she wouldn't be coming by. Evidently, she handed in her 2 weeks notice and was very sad, and very busy. But she did say she would come by next week.
Dad brought home pizza for pizza night (every Wednesday) and that made clean up a breeze. Mom was working feverishly to get some information to print from the Internet as Claire's brother had a report due tomorrow... out of the blue, the printer started to kick in and print out what mom was asking for. Claire's brother asked what the problem was, and mom just said the printer knew that dad was coming home, and it was in big trouble. They got a good laugh from that one.
Too much craziness going on tonight for Claire's bath, so new diaper and full tummy and off to bed.
After she was in bed about 30 minutes (about the time mom layed down for sleep) Claire started crying. Mom picked her up, offered her food, put her down again - this time on one of mom's shirts (she seems to be content laying with mom, and not laying in her bed). Not too sure what was bugging her, but she eventually fell asleep.

May 3


Claire was up a good part of the night with dad.
Mom woke her for school and she had a pretty good day. Mom asked the dr to call in a new prescription for Claire since her dosage had increased for her meds... at a new pharmacy. Mom picked up the prescription later in the day and once she was home she looked at it and knew it wasn't right... so back to the pharm. This stuff is like oil and vinegar, within an hour you can see milky sediment on the bottom of the bottle... mom had let it sit for an hour at home and there was no sediment on the bottom.
She told the pharm that she felt the pharm bottle hadn't been shaken before dispensing Claire's prescription. *The pharm said that not all meds that have 'shake well' on them have to be shaken really well... mom wondered about that one.
Mom asked her to pour out a sample from the med given to mom and a sample of the med they had on the shelf. She did (after weakly shaking the bottle), they both looked the same... mom insisted neither of them looked the way they should. Mom shook the bottle from the shelf (even shook it upside down so the sediment could mix properly) and finally the color was correct. (thick milky sediment on the bottom mixes with the clearer stuff that rises to the top to make it more milky than watery in color... the color is obvious when it is shake). This pharm was not familiar with this med at all. She didn't know what the correct color or consistency needed to be... and she didn't believe that mom knew either.
*The pharm said that there was just more bubbles in the one mom thought was correct, and that there wasn't enough air space in the bottle mom purchased to create those same bubbles. (picture: mom banging head against the counter) Mom insisted that was not the case - she knew there was NO sediment in the bottle they sold her since the big bottle wasn't shaken before it was dispensed. *The pharm suggested that they redose the meds, (picture: mom thinking 'been here, heard that') and mom said, 'not out of THAT bottle, it would be too strong'... afterall, they just took much of the inert stuff from the top of the bottle. The pharm insisted that the strength would be fine. (picture: pharm not understanding why mom was banging head against the wall)
Mom knew it took way too long to get Claire's levels back to what they needed to be once they were too low (low concentration of meds when not shaken causing seizures - taking days to stop them) or too high (from a bottle with too much concentration after meds dispensed out of bottle with out shaking causing sedation) to mess with a bottle that in any way wasn't perfect.
The pharm was incredibly patient with mom. Mom was acting frantic and all-knowing, insisting the pharm didn't know what was going on, as mom had dispensed this med for nearly 2 years (for Claire) and insisted she knew when the concentration was right, and when the bottle was shaken and when it wasn't. She also insisted that when you are dealing with a small 14lb child, and you are talking anti-seizure meds, it needs to be right... it isn't like vitamins that don't need shaking, or pills that can be simply counted out. She had just been through a bout with the seizures and felt the dosage was finally right, she doesn't want to be second-guessing the medicine, which should be the constant factor in this equation.
Again, the pharm dealt with mom very professionally, and said they would order a new bottle, and that they wouldn't dispense it until mom was there to pick it up... mom was tickled!! Like they actually put thought into their answer and was dealing with mom's concerns (which were very real to mom). Mom teased that she wanted to be the one to shake the bottle too... they chuckled and mom was turning to leave when the *pharm told her to just keep the med, the original dose, in case Claire needed it. Mom looked at her funny... after all that, mom said, 'I won't give that to her, you keep it'. Mom felt she would surely have seizures with that bottle... afterall, that is why she was there to begin with... she realized that the pharm just didn't get it afterall.
She is still worried that they just think mom is crazy and will continue to use the bottle with the higher strength (after they dispensed a bottle full of inert stuff to Claire). Mom will call in two days and hover over the pharm while they dispense the next month's liquid. She will do this every month, not knowing if the pharm dispensing in between is shaking the bottles. sad. Mom may never know if it is right, but she's familiar enough to know at least when it is close.
Man, if you read all that, you probably need to get a life... as does mom!

May 2


Claire slept through the night and mom woke her up for breakfast. She looked great and mom got a few smiles between med, diaper change, face washing and putting on her play clothes. Mom took her to daycare after Claire drank the better part of an 8oz bottle, a shake with vitamins/flouride and added olive oil for omega 9, constipation relief and added fat.
Claire is really feeling solid and her legs are filling out nicely. Mom spent time with her over the weekend working her leg excercises and she is really getting them stronger... mom senses that she really wants to stand up, and hopefully will be doing that soon!

May 1


Claire had a good night and was up fussing around 3am. Mom was up with her, wondering what in the world was wrong... Claire seemed very sad, didn't want to drink her bottle, so she cuddled with mom for a little while and then went to sleep. Mom had taken off her socks (from her hands) and so mom is thinking her hands were hurting, maybe she bit down on a sore spot... tho her head was still facing the 'better' hand, so not too sure if that was it... or gas.
In the morning, Claire slept in. She later woke up for breakfast and mom spoon fed her a bunch of cereal (rice cereal with bananas already added). She must have had 5+oz of that, and mom gave her some water to wash it down in between. Claire's had water before to wash down her tylenol and other sticky, gunky, stuck-in-your-throat meds, but this time mom gave it to her in between gulps of cereal to help wash it down. She probably averages about 1/2 oz of water per spoon feeding session.
She was still hungry after all that, so mom fixed her another shake and fed that to her, she worked on that bottle during church too. As mom was going up to receive communion, Claire jumped and let out a cry... then about 10 seconds later, another cry. The 10 seconds was filled with her catching her breath to let out an even bigger cry... probably looked more like a yawn, but mom knew what was coming next would be very loud... she finished receiving communion and headed straight out the door with her screaming child... who said T18 babies aren't loud?
Mom figured Claire bit down on her hand again, where it was sore... mom will need to come up with something... the socks alone aren't helping her with her need to bite down on something, and her hands are her best friend.
Mom took a sock, cut a hole in it and stuck a pacifier in the side where Claire would typically find her thumb. Mom stretched Claire's hand around the pacifier (inside the sock) and hoped that, at the very least, the paci would come between Claire's teeth and her fingers. It seemed to work, tho Claire is still fighting putting anything that resembles a pacifier in her mouth. Mom did notice she was biting down on the plastic part of the paci through the sock... which is better than biting her fingers. The sock seems to remain relatively dry, unlike when mom put the sock on Claire's hand without the paci. Guess we will have to see how this works out. If her little hand (and really it is just the right hand between index finger and thumb) could just dry up a little they could heal faster. The wetness of Claire's thumbsucking doesn't give the thumb a chance to heal. She has calluses on her finger tips, but they seem to be healing nicely.
After mass, Claire fell asleep on the way home, and slept in her carseat for about an hour, when she woke up, she was ... you guessed it... ready to eat again.
In the evening, dad took the kids for a walk around the neighborhood, and mom and Claire hung out watching Food TV (mom's favorite)... and then pondering what to fix for dinner, making bottles for Claire's day tomorrow, cleaning the kitchen and talking to friends far away (Claire video conferenced with Ryan's mom, who will get her webcam soon) and with family far away too!
Claire fell asleep around 10pm, and mom put her down after getting into a show on tv that didn't end until 11pm... mom's fault for being tired this morning.

April 30


Claire had a good day of lounging with mom. She had a spoon feeding in the evening, but not too messy that warranted a bath.
As she napped, mom and big sis made some cookies while big brother and dad worked in the basement... trying to clean it all up -- the equivalent of cleaning out a garage.
Mom made some chicken noodle soup from the leftovers of a delicious roasted chicken the neighbors gave them a couple days ago... and they had that for dinner while dad ate salad. Mom decided the key to homemade chicken soup is LOTS of salt. Dad's doing really well on his diet. The family had a nice evening and Claire went to sleep like a little angel. Mom took off Claire's socks tonight (from her hands) hoping they would dry out some, she layed Claire down, with her head facing her left hand, making her have to lift her head and move it to the right to get the elusive thumb which was trying to dry out and heal.

April 29
14lbs 3oz


Claire was up around 5am fussing, but got back to sleep on her own.
Mom woke the peanut up and fed her (by spoon) knowing she'd be hungry once she finally woke. She was very tired. She had about 4oz of cereal and mom washed it down frequently with pedialyte. Afterwards, mom put her in her chair and Claire was fussy, so she turned on the tv for Claire... still fussy, then she turned up the volume... fussy off and on... then she put Claire on the bed (mom needed to get in the shower and get ready for work)... Claire's fuss turned to talk and smiles, so mom took her shower and when she got out, Claire was sleeping. Mom finished getting dressed, got Claire's bath ready and woke her up... again... it took her a while to wake up as she was so very tired. Mom bathed her and gave her more pedialyte and then off to daycare.
Claire didn't seem to have any seizures during the night and her temp has been really good, even a little on the cool side. She has a dr appt today at 11:30am and hospice nurse is coming too.
The drs appt went well. The dr scolded mom for increasing Claire's dosage and not getting a level asap... mom mentioned it was the weekend, but knew that protocol needed to be followed. Claire weighed in at 14lbs 3oz... a new Claire Baire sit in a Chaire with big Haire record! (okay, we are a little giddy today!)
Next visit in 2 months, unless otherwise warranted.
The family is getting excited about the upcoming trip to Disney... they haven't been in 2 years and the kids can't see straight! Grandma and Grandpa will be joining them, as they only live about an hour away, and Claire's aunt will come to, she is only minutes away from WDW. Should be a big time, and Claire has her new big Chaire... so mom is excited about that!

April 28


Claire had a good day eating constantly... and that is a very good thing. Before mom left for work, Claire drank most of her 8oz shake.
She got a call in the morning from the hospice nurse with her tegretol levels -- her tegretol level is 4.9 and lab quoted a normal level would be 8.0-12.0.. so it appears her med needs to be increased. The hospice nurse said she would call Claire's dr to see what he wanted to do, and call Claire's insurance to check up on the genticist and the orthopedic surgeon referrals that were suppose to be underway... a nutritionist wouldn't hurt either, maybe mom can throw that one in there too.
Dad was home with Claire and noticed some seizures, but not as frequent as they had been. Dad fed her almost another 8oz of shake by the time mom got home.
Claire was so fussy for food in the evening mom fixed her some cereal hoping that would fill her tummy and she got out the old spoon to feed her. Claire seemed to digress a bit in her eating with a spoon, so mom worked on it more and vowed to feed her more often with a spoon... the food would go in, then the tongue would push it back out and the lips would purse together as if to say 'that stuff ain't comin' back in here'... so mom would do her best to get the food back in and eventually much of it was gone... aside from what was on Claire's face, hands and chair, mom could only assume that most of it was actually swallowed... and not by mom! (tho Claire did like to blow bubbles with it at one point and mom got a face full too).
She finally seemed full and later in the evening mom fed her 4oz of shake, and she threw up some of it... she seemed still hungry, so while video conferencing with grandma and grandpa, she drank another 2 oz and was ready for bed... around 10pm.

April 27


Claire had more seizures today, but late in the day.
First thing in the morning, Claire's hospice nurse came by to see her, she noted the seizures (3 while she was visiting) as she held Claire... Claire stiffened up and twitched, especially her bottom lip and her eye.
Since she is still having them, it looks like they will need to take her in for blood work, and hopefully this time she will have a less painful time with it... probably tomorrow. Hospice will see if they can draw the blood for Claire.
She didn't eat too well today. Mom went in to work and dad watched Claire during the afternoon.

April 26


Claire had more seizures today, but they seemed mild. The drs office called to see if the bloodwork was processed and mom told the nurse that they couldnt' get any blood, so there wouldn't be any 'results'.

April 25


Claire slept through the night. But mom had trouble sleeping. A ton of things going back and forth in her mind, plus wondering if Claire was having seizures, tho mom was certain she would cry after each one has she had done during the day... cry or cough and throw up... so Claire's silence was a good thing.. then mom had to check to see if her her little lungs were filling with air... chest going up and down... okay, good sign.
Mom figured Claire should probably stay home today... but it was a done deal when she started having mild seizures again (mom was thinking low blood sugar was adding to that). Then, around 9am, Claire was warm and you guessed it, a fever. It was 102.3... what is with kids these days... is it a new trend to get fevers in the morning instead of the usual evenings?
Mom left a message with the hospice nurse, who she knows is busy, and said pretty much if she didn't hear form her in the next hour or so, she was calling the pediatrician... mom eventually reached the nurse and they talked... both decided the same thing, call the ped and he will likely order bloodwork to check the anti-seizure med levels in her bloodstream(seizures) and to see if she is fighting something (fever). Mom called the ped, and eventually got a call back from the nurse, then she had to talk to the dr, so later got another call back asking mom to go get bloodwork. By that time, dad decided he would take Claire for the bloodwork and mom headed off to work.
Dad said they couldn't get enough blood out of the little peanut, perhaps she needs more clear liquids, so dad is going to relay the info to the ped and get some pedialyte in Claire, and if ped agrees, try again tomorrow. Poor dear... she doesn't deserve the needles, maybe they can just treat her without anymore of that... afterall, Claire is all about comfort these days, and bloodwork does not fall under that category.

April 24


Claire slept through the night.
She was up in the morning fussing, and around 9am mom noticed she had a seizure, not too long after that another one, tho mild, and then followed by a fever... about 101. Claire pretty much would eat really well, have her seizure, then throw up everything she ate (and more if possible) then go back to eating again, because she was hungry... then seizure... and this cycle for a few times... mom decided to give her more med (as she likely threw them up) and not feed her for a little while... at least until her seizures were farther apart or non-existent. Claire was very wimpy all day and mom was beside herself... she sent dad and the sibs to church.
She tried to get as much food in Claire as possible and by the end of the day, Claire drank nearly 18oz, which is very good for her! Claire had mylacon and tylenol for her teeth before bedtiime, but didn't have another fever all day. Mom got the kids to bed early and hung out with Claire until she fell asleep in her arms, then put her to bed. She fussed a few times during the night, but never more than 20 seconds at a time.

April 23


Claire had a good day playing couch potato. She didn't drink very much today, seemed lethargic and not really her bubbly self. Mom spent part of the day planting seeds and baking cookies with Claire's sister, who seems to need more attention these days... and dad watched Claire. No fevers today, Claire seems on the mend, must have been teeth.

April 22


Claire slept through the night. Mom woke her in the morning and got her all ready for daycare and mom dressed for work.
Mom was holding Claire and feeding her when she noticed she was a bit warm. She took her temp and Claire was 101.3 (under her arm). Mom knew Claire would be home today, so she had a few calls to make. One to hospice to see if the nurse wanted to come by to see her, and then decide if she needed to go to the dr this afternoon. Another call to Claire's dad to let him know and he said, 'of course, it's Friday'... seems like kids get sick on Fridays so it is a rush decision to see the dr and try to get in before the weekend.
Mom thinks it could be her teeth, but wouldn't rule out the cold, or something more serious lung related. Will keep posted.
Claire drank well and finally went down for a nap around 10:30am. Mom is waiting for the nurse to visit.
Claire's nurse came by and listened to her chest. Said she was 'wheezing' but still sounded relatively clear and for mom to just keep doing what she was doing with the shakes, random clear liquids, decongestant and nebulizer at night. She would call us on Monday to check on Claire.

April 21


Claire slept through the night.
Her nose has been a little 'clogged' up still, but she woke up all smiles this morning, so she is feeling very good these days. She drank under 2oz of shake this morning and off to daycare.
Claire had a pretty good evening... a little fussy, but ate pretty well and went to bed around 9:30pm.

April 20


Claire slept through the night.
She had a fun day, starting with PT, then OT. She worked on sitting, and propping her head up while on her tummy. It was hard work, and mom has the pix to prove it. They must think mom is some kind of nut going in with a camera for Claire's PT. Like mom cares what people think.
In OT, she got a cookie and worked on eating it... her first really hard thing that actually tasted good! She gnawed away on it for a little while being careful not to break off any large pieces that could cause problems in her throat. Mom isn't too sure Claire is really ready for all that yet.
She fell asleep shortly after her hospice visit. Slept for much of the afternoon giving mom time to get caught up on emails and work.
Later, dad came home with Claire's sibs and pizza, afterall, Wednesdays are pizza night.
Claire was up and a bit grouchy... she ate pretty well and mom gave her meds and mylacon to nip any potential gas problems. Claire fell asleep mid-bottle, so mom put her down, only to her Claire cry, pick her up, Claire quieted down and looked at mom as if to ask, 'what is the matter, why did you pick me up, I wasn't crying, oh no, not me'... so mom held her for a moment and no crying... mom put her back down and in 1 minute, Claire started crying... mom was a bit confused... picked Claire up and got the same look, as if she wasn't crying... and all was right in the world as long as mom was holding her. Dad thinks she's a little spoiled... so mom gave her a bit of Tylenol after the third try and she still fussed, but eventually settled down on her own and fell asleep. Whew...

April 18


Claire slept through the night.
She woke up with her 'green gunk' nose as she is still fighting that darn cold. She drank almost 4oz this morning and was full of smiles for mom... a full tummy tends to do that to us all.
She went to daycare and later to PT. Dad took her so mom is waiting for the full report.

April 17


Mom and dad got home around midnight and Claire and her uncle were snoozin on the couch. Mom sent him to bed and put Claire in her bassinet (which she is starting to outgrow) and went to sleep. Claire slept through the night and even slept in some so mom could say goodbye to her brother and sis-in-law as they journeyed back home. Today is Claire's uncle's birthday too... so wishes were in order. It was so excellent for mom and dad to have a night out... they need to work on doing that more often, and the kids are always asking for sitters, so they probably need a break from mom and dad too.
Mom went back to lay in bed for a little while, then up to get ready for church. By that time, dad was already out, opening homes and putting together contracts, but he did come home long enough to watch Claire while mom took the sibs to mass. Claire has a cold and mom doesn't want her to catch anything more, esp since she will be in daycare next week, it just seemed like it would be good for her not to be around too too many people today.
After mass, they had lunch and mom fed Claire more, then everyone took a nap (Claire, brother, sister and mom), and the house was so nice and peaceful. Later, big sis woke up and pretty much woke everyone else up, she was hungry.
The kids were banned from the computers and told to get outside. Mom and Claire did the couch potato thing until mom felt the need to clean the kitchen and start dinner, with Claire watching on from her new 'seating'. She loves that new chair. They practiced more bottle holding and Claire had her hearing aid in so mom sang to her a little (she was trying to pull it out, so mom stopped singing and Claire was fine with that). heheheh.
Claire had a very early bath too. It was good for mom as she and Claire were pretty tired towards the end of the day (even with naps) and in the morning there wouldn't be time for a bath.
Claire was in bed by 10pm after nebulizer treatment and mom was asleep very shortly afterwards.

April 16


She woke up with her 'green gunk' nose as she is fighting a cold. She had a fun morning as her auntie gave her much attention, changing her diaper and making sure that if Claire wanted a bottle, she was going to get one. They also worked on Claire's bottle holding trick throughout the day.
Auntie put up glow-in-the-dark stars for Claire's big sister in her room. Mom had painted the ceiling to look like clouds a while back and bought the stars in hopes that she would get to put them up one day so when the lights go out, it would look like an evening sky (in cartoon land maybe... heheh.)
Dad and auntie set up the play tent for big sis in her room, so she was also enjoying much attention. She even slept in the tent in the evening (under the stars). Auntie also cleaned the house and even dusted (the dust wasn't sure what the heck was going on!)
Meanwhile, Claire's two uncles took big brother to the FSU spring game to check out the football team. They slathered up with sunscreen and it was a gorgeous day, highs probably in the mid 70's.
Mom and dad went out to price kitchen cooktops for the 'new' kitchen they are planning... they got some lunch while out too. Afterwards, they were home briefly to regroup, make some shakes for Claire, then out again to get dinner and see a band. They went to one restaurant where Claire's cousin works, and met up with dear friends, and had a drink with them (or two) and later decided not to eat there, so everyone left and mom and dad went out to another restaurant with an excellent waiter (they loved him) and had an real fun time. Then out to see a really great rock and roll band that makes an appearance a couple times a year... then home.

April 15


gettin ready for school!Claire was fussing, but didn't seem hungry, so mom gave her some mylacon and a decongestant and she eventually settled down and went back to sleep.
Mom woke her in the morning to get ready for daycare and got a call from Grandma and Grandpa. Claire's uncle and aunt are coming to town this weekend (obviously not the ones who already live in town). Should be a fun weekend! Grandma will be sending up some items with them that mom and dad couldn't fit in the car during the Easter visit... and probably some things they just forgot too.
Mom video conferenced with them for a brief moment so they could see Claire drinking her morning bottle... then off to daycare and work.

April 14


"My  new tooth"Claire was up around 3:30am, crying. Mom held her for a while and fixed a bottle, but Claire seemed disinterested. She appeared congested, so mom gave her a decongestant, and eventually Claire drank an oz of shake and when back to sleep.
Mom woke her in the morning for her bath and meds... then gave her some pedialyte to help her congestion. She was a happy girl and talked to dad while he tried to work. She was sitting in her new stroller/seating next to him, and he was very distracted and enjoyed hanging with her... she made sure she wasn't ignored. :o)
Mom finished packing her up and off to daycare... and noticing another new tooth - her 5th!
In the evening, Claire was in her new chair and sat with the family at the table for dinner. She even held her own bottle for about 30 seconds at a time... baby steps.

Video - Claire holding her bottle   
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She was in bed and up again around midnight... probably just worried about getting her taxes in on time.

April 13


"My new RIDE"Claire had a good night, and mom woke her late in the morning. She had an appt in the morning with a company who could fit her for a stander. Mom wants to explore the option, but also wants to work on her leg strength before getting more equipment for Claire. He was a neat guy who seemed very knowledgeable and loved working with kids... Mom was impressed with him and put Claire in her new chair so he could check out how it fit her. He noticed her head wasn't being supported the way it probably should be, and offered to go back and find a good solution for her. Mom was pleased as she had been toying with the head support for days trying to get it right, but with little satisfaction.
After that appt, it was off to PT and OT. They were pleased that mom brought the new seating/stroller. It was heavy, and took mom a little extra time trying to fit it in her truck, and get it back out again and put together... but that will just take time and practice (and more upper body strength :o).
Claire's PT used the appt to check the fitting too, and agreed about the need for better head support, and the need for a waist belt, as there is just a Snoozin'vest holding her in, nothing around the waist. She also played with Claire with some toys that Claire enjoyed to see if she could bring her head down more, etc.
OT worked with Claire's arm strength and then Claire and mom were soon back home.
Dad picked up the kids shortly afterwards as he was playing downtown in the evening with his band. Hospice nurse came to visit and Claire weighed in at a whopping 14lbs 2oz!! A CLAIRE BAIRE RECORD!!
Her nurse said she sounded like her lungs were getting gunky again, so mom needs to start the nebulizer again... more clear fluids and decongestants too.
Mom got dinner ready, kids bathed and hung out in the evening, dad got home a little later than he had planned... and he was tired, his internet connection was down - so work would have to wait, he just went to bed. Mom finished feeding Claire and giving her evening meds. Claire was tired too, so everyone was in bed by 11pm.

April 12


Claire was up around 6am, crying. She quickly went back to sleep by herself and mom was up shortly afterwards to get ready for work, so she let Claire sleep for a bit longer.
Dad made shakes for Claire and mom got her off to daycare.

April 11
25 months


Claire was up around 4am... it is getting to be a habit. Mom heard her moving around and looked over at her... she had pushed her self up with her right arm to get a better view of what was going on... yeah baby, she should be holding her bottle real soon with strength like THAT! It was so cute to see her do it... she had pushed herself up like that before when Grandma was holding her, it was so cute and Grandma was SO proud!
More snoozin Mom fed her a couple oz, didn't make her hold the bottle. She drank and was ready to go back to bed.. just wanted a little midnight, er, mid-morning snack.
She was up in the morning too, ready for her bottle.

When mom took Claire to daycare, she showed off Claire's new trick. She showed her caregiver how she was letting Claire hold her bottle, and Claire brings the bottle to her mouth. Then, Claire's caregiver put the bottle in Claire's hands and noticed how quickly Claire pulled it to her mouth, and realized she had to be quick to guide the bottle, or it could end up in Claire's nose. :o) She was tickled that Claire had learned a new trick... and so very proud!
My birthday toy! Kick Kick KickClaire has PT today, daddy said he could take her for mom, then back to daycare.
Her PT went well. Next visit mom will bring Claire's big new stroller to be sure everything is fitting her well.
In the evening, mom picked up Claire and the little peanut was fast asleep before they got home. Mom left her in her carseat for a few minutes until she woke up and wanted to join in the excitement of the other kids around her talking and having fun.
Claire has been very vocal lately... usually when mom wants to hear tv, or is on the telephone, Claire usually has much to say.
After dinner, the kids were off to bed and Claire finished up her bottle and meds. Mom gave her some mylacon, as she has the past two nights, because Claire tends to get up in the middle of the night crying with gas. Claire was in bed by 10pm, and mom and dad shortly afterwards. Claire did well drinking today. She had a few oz before daycare, and then over 9oz at daycare... then another 11 or so more in the evening.

    We're here!!  ...and full of energy!!My friend CinderellaGot our bug eye's on! "My Aunt and Snow White and Me!!"Sleeping Beauty, or Briar Rose, or Princess Aurora, she answers to them all! Kisses from MickeyMickey and the kids Alice, my friendClaire and her big SisEnjoying the steam boat ride Talking to GrandmaMe and Princess JasmineGot to see Cinderella again! Me and Pocahontas Me and the Little Mermaid, ArielChip and Dale are big fun! Claire on Safari Expedition -- looking for some elephantsKickin back and takin a breakClaire ridin the monorailBig Brother pushing Claire around.