Claire's Journal -- 36th Month
March 10

Claire was up crying at 4am. Mom got her and fed her. She woke her cousin who fell asleep on the couch and helped mom out, then eventually went to bed. Claire drank a bottle after mom gave her some decongestant and tylenol (thinking the shot may be hurting) and Claire went back to bed, but not back to sleep. She stayed up talking for a while.
Mom got her up this morning... still with the runny nose, but maybe not as bad as it has been. Got her ready and she was off to daycare.

March 9


Claire was up in the middle of the night with her cousin. Mom got up and fixed a bottle for Claire and her cousin fed her so mom could go back to bed -- Claire's cousin has been such a big help this week!
Mom got Claire up and off to school. Mom had a meeting later at work, and shortly afterwards had to leave to get Claire to her RSV shot. Perhaps her last ones ever. Then picked up the kids and came home and cooked dinner (heated up some enchilada casserole she made on Sunday). Dad was golfing a bit in the afternoon -- it was cold and windy, so it didn't sound too enjoyable, and brought his buddy home for dinner before his friend headed back to Valdosta. Claire had a goodnight. Mom was exhausted so Dad and Claire's cousin took over and cuz bathed and fed Claire and dad helped get her off to bed.

March 8


Today is Claire's last day of PT while she's under 3 years old. Mom will have to pay full price to continue PT or OT (at close to$100 for 30 minutes - or so she's heard). She can't imagine Claire not getting PT, so she's planning to take her once every two weeks. A considerably less amount than the 3 times a week that was prescribed and paid for through the Children's Home Society clinic. sad. The county school system is suppose to take over from here, but Claire's IEP (Educational Plan) won't be reviewed until the end of the month as it is, and mom hasn't heard good things about the therapists showing up as often as needed, etc. Mom is going to try to not complain until Claire isn't getting what she needs (that would be on Monday). Mom has enough info to at least work on Claire herself until the transition can be made. Lets hope it is a smoother one than mom is expecting. :o)

March 7


Claire slept well and woke up with a green nose again. She seems to be doing pretty well overall, just congested, but eating pretty well this morning.
Mom's going to post a guestbook this week for anyone who wants to leave a note for Claire as she celebrates her birthday.

March 6

Claire's sister woke mom up around 5am saying she just threw up (in the toilet thank goodness). Mom sent her back to bed to get some rest and checked in on her before school. She was quite perky, esp when mom told her (as a test) that she *would be going to school, and she was full of energy (in a not so good way) and reminded mom that when she's thrown up before, she's been allowed to stay home from school... and probably thinking there would be parties going on at home while she's gone since her cousin was visiting. Mom reminded her that everyone had somewhere to go today, and she would be going to school. Not another word from her, got dressed and off she went happily... somewhat.
Claire slept well and woke up with her green nose again. Not her usual smiling self, but mom woke her up, so that is to be expected. She went to school this morning, a little later than usual as mom got a call from big sister's school about complaints that she wanted to throw up, yet she was able to *skip back to class. Mom was suspecting big sis was stressed, but not too sure what causes the random upset tummy. Dad and cuz went to her school for lunch with big sis today - and to check up on her.
Meanwhile. Mom is getting the party plans in order for Claire's 3rd birthday, March 11 at 4pm. Should be a lot of fun, and if anyone wants to come, just RSVP. Not too sure many invitations will get out into the mail this year, but hoping to have a nice celebration all the same as the weather has been gorgeous. This year, Claire has pretty much decided she has everything she needs and would ask friends and family, instead of a birthday gift, to donate to one of her favorite charities in her name. The charities who have really helped Claire and her family during the past 3 years are: Children's Home Society of Florida and Big Bend Hospice. Mom can post more information later if anyone needs it.
Thank you again everyone for keeping Claire in your thoughts and prayers.
Mom picked Claire up for therapy and she was sound asleep. The nurse said she was trying to wake her to feed her, but no-go. Halfway through therapy Claire woke up... she was sitting and proping on her hands and she was fussing at her therapist something awful. Since she was awake, her therapist put her on the big ball, one of Claire's favorite places, and she proped on her elbows and lifted her head up in the air... so high... mom was amazed, and the therapist was too. She did it a few times as her therapist told a story to mom about her weekend. It was almost comical.
In the evening, Claire ate well, but after her meds, she threw up most of what she'd eaten, and still refused more food, so mom just gave her a bit more meds and put her to bed.

March 5

Claire was up at 3am, gagging, so mom rushed in. Helped her keep it all down (typically by blowing her her face)and picked her up to see if she wanted something to eat. Mom fixed non-formula food, since Claire has been extremely congested with a runny nose. Definitely has that cold back. She had a few bites and opted out, so mom put it in a bottle she could squeeze (since it was kinda thick, she opted not to use the haberman) and Claire took a few more gulps and decided it was the same stuff as before, and started blowing bubbles at mom, at 3:30am. Mom decided she was pretty fine, but took her temp anyway, since she had that mild temp last night, and sure enough it was 100.2. Claire got her Tylenol, and mom opted not to try to feed her more, since Claire tends to bring her food back up when she has a fever (mom learned that the hard way). Claire and mom went back to their beds and slept in.
Mom checked on Claire later in the morning and she was awake in her crib, just hanging out with a nice runny green nose. Mom got her cleaned up and tried the food again after her meds. Claire drank about 2oz and then decided it wasn't what she wanted, so the thumb went into the mouth and wouldn't come back out, as if it were glued in there and Claire had no say in the matter. Mom pulled her closer to cuddle and Claire put on a grin a mile wide. Ahhh, that's what she wanted... cuddle time, thumb in mouth and back to sleep on mom's chest. ahhhh. Mom let her sleep a bit there while going through big sis's school folder, then back to her crib.
Claire's cousin is coming in today from Michigan. The family is more than excited to have her come and stay with them for spring break! :o) Mom has been adding duocal to Claire's pedialyte and it seems to be giving her a little energy. Enough to give mom those great smiles and work down another bottle.
Claire's cousin arrived and sat down with Claire and fed her a bottle... she really had the knack. It gave mom a little break as she was trying to get some dinners ready for the week ahead and dad was working on tonight's dinner. Claire did well eating and went right to sleep after her bath.
Today Claire appeared to be seizure free and fever free too -- Yeah!! She'll be back in school tomorrow.

March 4

Claire woke up with a nice green nose again. She wasn't big on eating, and mom figured she was congested, but tried often. Claire slept a good part of the day, and fought with mom much of the rest. Mom snuck in a nap while Claire and big sister were sleeping too. Later in the day, Claire's cousin was being confirmed (a sacrament in the Catholic Church) and so the family went to support her. It was a nice mass, and Claire's aunt and uncle held her the first half, until she started gagging, and then her dad got her and took her out of the church. She threw up a few times (the food mom fought so hard to get in) and had a couple seizures too. After mass, the family said hellos and goodbyes and left fairly quickly. Claire's aunt brought her copy of a newsletter that Claire was in... actually, she was front page. Her daddy calls her a cover girl now. Mom wrote the article and it was very cool to see if published. Claire is a special little person, and now even more people know just how special she is to us.
Sitters were coming over to watch the kids so Claire's parents could go out. Claire had a low grade fever, 99.6, which sometimes goes away by itself, but mom didn't want to take a chance and gave her a dose of tylenol before they left for dinner. They weren't gone long and the sitters were from Claire's school, so they know her pretty well, and mom loves them! When mom and dad got home, all was well and mom got a little more food in Claire and her meds, then put her to bed... hoping she got enough to sustain her for a few hours so mom could get some rest. Good thing mom had that nap!

March 1
Claire and her ashes on Ash Wednesday
powernap during therapy   wow... I can do this myself with a little practice???!   sitting pretty
ready to eat... like my Ashes??!    ...and ONe more th ing...  how about a little more banana and a little less formula... eh?!
February 27

Claire had banner day at therapy. She sat for a few minutes on her own, no help from anyone or anything. The therapist sat Claire on the PT's feed and with her hands under Claire's arms, was able to bring her to a standing position. Claire stood for a good while bearing weight on her own legs. Mom was so proud and thought it was probably difficult for Claire to go from sit, to squat, to stand, but she did it a few times. She loves to work on those leg muscles. It is probably a nice stretch for her too.

February 26

sleepy grrlClaire slept through the night. She woke up with a nice green gunky nose. Her brother woke up with a little cough, but no fever yet (fingers crossed). Mom fed Claire and held her for a while watching some tv while Claire fell asleep. Mom read her email and looked for information about baby Tierney, who is a T18 child only a month or so younger than Claire, but recently caught the flu. Tierney and Claire looked so much alike, it was really neat, but her family lived so far away. Tierney's mom had been keeping Claire's mom updated and mom had been very worried as the little peanut wasn't keeping food down, throwing up a lot and overall not getting any better. The news today was very sad. Little Tierney had passed away. Her mom sent Claire's mom an email and mom cried. We always think they will just get better. Everyday is such a gift from God.
Mom went to mass in the evening as Claire's big brother was still running a mild fever and Claire was wiped out from her afternoon bath.

February 24

Claire had a good day at daycare, seems to be on the mend once again.
Mom got a call from her brother at school, seems he has a low grade fever and chills. His temp is 99, and in the evening popped up to 100.5, so mom gave him tylenol before bed. Fingers crossed it is just a quick virus.

February 23

Claire slept great. Dad came home late from a basketball game and said she was making little noises like she was just getting comfortable, but fell back to sleep. Mom was up, and dressed and then fed Claire and out the door. Claire was giving mom really big smiles and dad couldn't keep his eyes off her as mom tried her best to feed Claire through the grins.

February 22

Dad was up with Claire giving her some food in the late night hours, as he was up anyway. Mom was up with her in the morning getting her breakfast and meds, then Claire went back to bed for a good nap. Mom got a lot of work in and then woke Claire an hour before therapy and fed her more. She coughed up some phlem before therapy, mom was happy she got that out. Claire was in a terrific mood for therapy, all full of herself. Arms flying around and talking through the grins. Her PT worked on positioning with the tadpole (a system of velcro and cushions for getting Claire to do what she needs to to help straighten and stengthen her spine and other muscles). Her OT worked on getting her to grasp with her hands and tried out a new splint, which Claire didn't much care for. Mom picked up the kids after therapy and home for homework and baths while mom got more work done and Claire napped briefly.
Dad was home later in the evening and then off to a basketball game with friends.

February 21

Claire was up for school, but when mom picked her up, she was fussing. Not her usual happy morning self. Mom wasn't too sure what to think until she stuck her finger in and noticed teeth. Two new teeth that only just popped in. Dad got Claire's meds and tylenol while mom got her bath ready. Claire had a nice bath, that she cried through, and cried as her clothes went on, cried during some cuddling, and then cried through her breakfast and lightened up a bit before she got to daycare. Perhaps the tylenol kicked in.
When mom picked her up, she was told Claire had a terrific day -- ate a bunch. Mom was pleased to hear that after the morning they'd had.

February 20

Claire was up with dad, who had yet to go to bed. Mom is lucky dad stays up late, but once he's in bed, he usually is down for the count. Claire had a good day, staying home with the kids for the President's holiday. Claire's big brother was bored, so he made some cookies, big sister used her new markers to draw lots of pictures of her family and friends... everyone wearing a crown or a halo. Mom filled up Claire every chance she got and trying to keep the food down as best as they can. Claire is doing much better today, it is her last day of antibiotics. Still a bit congested tho.

February 19

Mom came home from her trip today, only to find out that the fever dad mentioned (Claire had on Thursday of 102) was actually more like 104. Dad said he nearly called the paramedic, as her temp didn't go down very quickly after the tub and tylenol. But it did finally go down. Mom was happy to be home. She also got lots of information from the kids about how dad let them eat candy after breakfast and all sorts of good stuff. Mom and dad had a good laugh. Everyone looked fine and dad was able to get Claire on her usual antib's when she went into distress from the fever and throwing up and spending hours with Claire in the dr's office... He handled it so well, mom thought candy after breakfast was the least of his concerns.

February 14

Claire slept great. She was a ball of energy this morning as her mom told her she'd never seen a grin that big!
Claire got to school in time to hand out her Valentines Day cards. Big sister and brother got some chocolate this morning from mom and dad, but couldn't eat any yet. Sis took in her valentines with lollipops attached yesterday, so she's all ready, and cookies in today for her classroom party. Mom will be stopping in to check on things and help out with the festivities. Dad is swamped today and getting a bit stressed, but not about mom going out of town, just about a bunch of other things he's been busy with.

February 13

Claire had a good night, dad even fed her in the middle of it and she ate a bunch, maybe a growth spurt? When mom got her to school, she realized she'd forgotten to give Claire her meds -- geez! So she and Claire went to the clinic and got a late dose.
Mom took Claire to therapy, and dad met them so mom could get back to work. Claire had a good day and dad said she did some good things.
Mom thinks that getting her afternoon dose on time (but not real long after her morning dose) added to why she was passed out when she got home... it was probably the coldest night (and day) of the season, and when the wind hit her coming out of her school, she didn't flinch, just kept sleeping, and all the way home and out of the car - cold wind again - nothing. She was worn out. Dad put her in her bed and she slept while mom made cookies for sister's party tomorrow at her school, then around 8pm, Claire was up and hungry, she was fed and soon back to sleep.

February 11

Claire slept great. Her brother had a birthday party, so Claire was a little left out, everyone was outside, but it was cold and damp and mom wanted to be sure Claire didn't catch anything... She had a pretty good time when folks would come by to see her, mom stopped by frequently to feed her, but overall, she spent much of the afternoon in her stroller/wheelchaire and sitting up like such a big girl, she had toys she was playing with off and on and at one time she fell asleep in her chaire, so mom let her stay there and catch a few "z's".
Dad took the kids to a basketball game in the evening, so mom had some quality time with Claire, who had a nice warm, long bath and the lots of food and cuddle time with mom.