Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 46

January 3

 

Claireis having a good day.
Mom was very busy over the holidays and found it hard to keep the website up, but will go back in fill in the blanks as best as she can.
Claire was up today and had pedialyte with Miralaz (laxative) to help her out a little bit. Her tummy doesn't seem overly full, but it has been a while since mom has seen a really full diaper, so she's going to help Claire with that.
Claire went back to sleep after her morning drink and mom got some work done, then up again for some mashed potatoes and applesauce, then played with her toy while mom worked s'more. She loves her new toy her g'ma got her, she just touches it and it lights up and plays a song. She didn't get the Pete Parrot that she asked for for Christmas, but she did get some really nice things that will keep her busy. Mom will keep looking for it and get it for her birthday (in March... the big *4*).

January 2

 

The kids are home with dad today, mom is off to work.
In the evening, big brother, still wanting time on his puter, asked to feed Claire again. Mom agreed.

January 1, 2007

 

Everyone is home and enjoying the day off. Mom was awakened by Claire's brother asking if he cleaned his room and Claire's room, maybe he could get more computer time... hey, it worked once, right? Mom said he needed to clean his room anyway, and she didn't want him cleaning Claire's room (too many spring clothes to go through), but he could clean Claire's sister's room and the hallway... and his room, and maybe get some computer time. He wasn't crazy about cleaning his sister's room, and really she should do that, but he was desparate to get on his puter, and mom saw an opportunity to get that room picked up. It was a deal. Mom helped and much of the day was committed to cleaning up more of the house. Later, there was little left for big brother to do to get computer time... so, he asked if he could help with Claire. He offered to learn how to feed her. Mom agreed with a little training session, but not too much, as Claire is easy to feed, esp when she's hungry. Big brother fed Claire, but not without mom making a photo shoot out of the whole ordeal. Video and still shots, it was a sight to behold. He did a great job feeding her too!

December 31

 

The family went to spend NY Eve with friends, but left a little early to be off the roads before the stroke of midnight. It was nice having everyone sitting on the couch at home in front of the Christmas tree, ringing in the New Year together, then getting the kids off to bed soon afterwards. Life is good.
Claire's brother has been banned from his computer - sadly, he got some really neat computer games for Christmas -- but no computer time. Even so, he is still trying to get an hour or two here or there even minutes on the puter, so he started bargaining with mom. Since the house was incredibly messy, mom let him clean the common rooms and get some computer time. After much cleaning and dusting, he got his time, and mom got a place to sit down. Dad was even impressed.

December 25

 

Christmas was big fun for everyone. We are so blessed to be together and healthy on Christmas and hope that we will be like that all year long. Claire is doing better. Mom and dad decided if she hadn't improved, or worsened, they would leave Grandmas to head back home, but she seems to be on the mend, so it looks like they will be able to enjoy the rest of the holiday with family.

December 24

 

Christmas Eve. Mom figured out that taking out the pedialyte keeps the food down, and the Motrin must have done the trick yesterday. Tonight she is keeping her food down and no fevers. Earlier in the day, dad took Claire's sibs to see their uncles for Christmas Eve. Mom opted to keep Claire at grandma's since the trip wouldn't be fun if Claire decided to throw up or get her fever back in the car. Mom decided that too many people weren't good for Claire, or for the people. Claire and mom also missed Christmas Eve mass, tho everyone else went and then out to dinner afterwards, they did send a meal home for mom to eat. It was kind of nice... the place was quiet and mom even got a little nap in while Claire napped... on Christmas Eve... not something she'd probably ever done before. Mom had a sore throat for the past week and felt under the weather for some time, she really needed the rest. The only thing that would keep her home from all that would be Claire's throwing up and fevers. Things happen.

December 23

 

Still having fevers, 100.4 around 11am. She seems to throw up when mom gives her Pedialyte (with DuoCal for calories and energy) but when mom gives her rice cereal, she keeps it down. Mom is confused as to how to keep the liquids down, but decided to work on the calories to get her stronger and the liquids will come, even if just by applesauce. Fever went up again at 11pm...100.4 again. Mom gave her motrin today. She's getting tired of the fever, since typically when kids have fevers, they also tend to throw up.

December 22

 

Clairehad a temp again today. Around 10:45am, she was up to 101 under her arm (that's like 102 orally). The family decided to head out of town. She's eating well and that is about all they could hope for.

December 21

 

Clairedidn't seem to be doing too much better, mom hadn't noticed seizures, but did notice her fevers. She was at 100.5 under her arm at around 5:30pm. Mom will let them 'go' for a bit, as long as they don't go too high, to see if Claire can get them down and fight what she needs to on her own. Dr called and said she was surely fighting some kind of bug, keep her on the antib and let her go 'on tour'.

December 20

 

Not a real fun day for Claire. She wasn't quite herself. Around 9am, she started with a little throwing up. Mom didn't think too much of it, maybe she stuck her own finger in her mouth a little too deep causing it. Mom and dad decided to get a little Christmas shopping done before the holiday tour started, so off they went with Claire. Not too far down the road, Claire started really throwing up... projectile... and dad was upset, mom was calm and said they just needed to turn around, get home and clean up. Once home, dad cleaned the car and headed out to get the kids who had 1/2 day, and before he even got there, mom called him to tell him Claire was having some seizures. She gave Claire an early dose of meds, only by about an hour or two. The dr's office was at lunch so she couldn't reach them and opted to watch Claire to see if they got worse (then they'd go to ER) or lightened up and go away on their own, which they eventually did. Her arm was twitching and her let was twitching. Mom saw it was rhythmic and uncontrollable. Claire didn't seem to be 'all there' so at least she wasn't in any kind of pain. Soon after talking to dad, Claire's leg stopped, then her arm, thent he drs office opened and mom called. They called back later with a 4pm appt. Mom took it. The dr saw Claire and said her lungs were a little gunky sounding and put her on her old faithful antib, Zithromax. Claire hadn't been on it since 5/05 and mom thought that was pretty cool. Mom mentioned Claire's holiday tour (visiting with family in various areas away from home) and the dr needed to get the results from Claire's pending bloodwork before making a call on that. At the drs office, Claire had a mild fever, mom hadn't noticed a fever.

December 12

 

Clairehad a terrific day. She was up playing with her brother who was nearly late for school as he found Claire's tickle spots and couldn't leave her alone. He should have used that time to study for his midterms today... but couldn't bring himself to do that, not with a happy girl.
She still has her rash on her arm. The results should be in tomorrow from a culture. It appeared and then got worse, mom knows that a bandaid makes it worse, but doesn't want her to go without one, mainly because it is nastly looking at this point. At night, Claire sleeps with no bandaid tho, that seems to help some.
Mom picked her up and she was quite vocal after school. She's been eating really great and having a wonderful disposition. She must know Christmas is coming soon!

December 11
19lbs 2oz

 

Clairehas a rash and mom thinks it is time for the dr to give it a lookover. She called and got an appt this morning first thing, and dad was at the office. Mom had a meeting soon, and couldn't take Claire without cancelling - and she was about to, but but dad said he would be home from the office to take her. Meanwhile mom fed her and got her ready to go to the dr. Today is the day she would typically have OT, so she eats with the therapist at school and mom rushes her out. No therapy today because of the dr appt, so mom needed to feed her before the dr appt.
At the dr, Claire weighed in at a banner 19lbs and 2oz!!! A new Claire Baire record!
They took a culture from her rash on her arm to see what it could be. It looked like ringwork (a name for a fungi that presents itself as a ring) that developed into something worse, since mom kept a bandaid on it and it likely stayed a bit too moist. Then mom realized the anti-fungal cream had expired a year ago... this after about 3 days of treatment... who looks at exp dates anyway? Unless they don't work, right?
Mom is hoping the dr would give dad a prescription for a new lotion with more potentcy and no antibiotic and send them on their way. Sure enough, that is what happened. And darling dad even filled the prescription and remembered to leave the carseat at Claire's daycare. Go Daddio!
Claire also got her flu shot today AND is signed up for her RSV shots again this year, they started in Sept, so she is a little bit behind. I'm sure she isn't sad that she's missed 3 shots already!