Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 44



Clairewas up early... talking and hungry. She slept great lastnight and mom was working on a new diet for her. Sinceher stool was so black, mom was thinking it was fromall the rice cereal as it is fortified with iron. Thebox states that one serving is 40-60% of the RDA. Andknowing that Claire gets several servings a day, momdecided to cut out the cereal for a day or so and seehow things go (pun intended).
Claire is eating vanilla yogurt and applesauce for breakfast(not mixed together) and mom is going to research somebetter starches for Claire, tho she can still have hercereal, but maybe just once a day.
Claire was off to school. Mom sent in yogurt and bbfood (applesauce, bananas, sweet potatoes) and thingsshould be working well for Claire soon. She also sentsome Juicy juice. Mom thinks Claire is constipated also.Claire drank some J. juice this morning with her miralax(a type of laxative).



Clairewas still in ER after midnight. A second round of chestxrays were ordered, and then they didn't come out well,so another xray was needed. The nurses were excellent.They asked mom if she wanted to go get dinner (earlierin the night) she said she would wait to see if Clairewould be admitted, or go home until she decided to getdinner... well, by midnight, mom was a bit hungry, thenurses had gotten graham crackers for her earlier thatevening, and now they brought her a turkey sandwich.
They also gave her a second dose of ativan during theER visit too.
Shortly before 1am, they were released to go home. Theinstructions were to give Claire an extra dose when theygot home, but they had an extra dose of her anti-seizuremeds from the pharm at the hospital - they gave her a10pm dose to keep her on schedule, so the nurse saidshe would just give that to Claire and she could go straightto bed when she got home. And she did...and so did mom.
In the morning, mom worked from home. She got an apptfor Claire to see her ped and he figured it was likelya case of Claire growing and not having her dosage increased.So he increased her anti-seizure med dosage by a verysmall amount and mom agreed that it would probably takecare of it all. Claire also had PT later in the day,and she was doing great with her sit to stand and herlifting her foot to work on her walking reflexes. Yeah.In the evening, mom saw no signs of seizures all dayand decided that Claire could go to school tomorrow andthey would just see how she does. She ate great todayand slept a lot in the evening. Was up for dinner andmeds and then right back to sleep.

18lbs 11oz
ER visit


Clairewas stuffed when mom finished feeding her, then out thedoor. She was in a good mood in the morning... and momoff to work. Mom decided to vote after work, around 6:30pmis the best time, no one is at the polls then. Mom wasplanning to pick up Claire and head over to vote. Momwalked in and Claire's teacher was holding Claire. Shesaid, 'is this a seizure?' Claire was very paleand lethargic. She was making a gasping noise with eachbreath and the teachers thought maybe it was a seizure.Claire had been laying down and this started out of nowhere.Mom said it could be, but thought she was just reallycongested and needed some oxygen. Mom decided to justtake her home and put her on O2 there and maybe giveher meds early for anti-seizures to nip it. On the wayto the car, mom noticed Claire's left arm and leg twitching.That really scared mom, along with Claire's color andher noisy breathing. Mom took her straight to ER. Oncethere, mom barely filled out the form and she was whiskedaway with Claire, past triage and straight to a roomwhere several nurses gathered around her and gave heroxygen and started an IV for her possible admittanceand some ativan to control the seizures.
Once the med kicked in, they stopped. Mom figures she'dpicked Claire up shortly after 5pm, and they didn't startthe IV until closer to 5:45pm. The hospital is on theeast side, Claire's school is on the west side... 5:00rush hour traffic, you do the math. Mom was frantic gettingthere. Claire fell asleep shortly after the IV. Theyhad also gotten some blood for testing. They tested hertegretol levels, her glucose, all sorts of stuff. Theysaid her stool was black and tar-like, but that had alwaysbeen the case. They said she had blood in her stool,but it wasn't a concern if that was how it always looked(black and all). Mom thought that wasn't really somethingto blow off, but didn't know what else to think.
Claire weighed in at a whopping 18lbs and 11oz! Her lastoffical weigh in Feb 06 was at 16lbs 11oz...she may need a dosage change... ya think?
They did chest xrays, probably due to her history ofpnuem and mom told them that she tends to get seizureswhen she's sick or hungry. Mom knew she wasn't hungry,but the sick part, well, maybe a cold... not likely pnuem...but given her gasping, anything was possible. Mom satin the ER exam room for several hours... watching thevotes come in on an election that could have used hervote. But she figured it was God's intention that shenot vote... nothing else could have kept her away, exceptClaire going to ER. Wasn't in the cards this year...and that is fine, Claire will be better.



Clairehad a great morning... tho it started out rather quick,her dad got her out of bed, changed her diaper whilemom gave her meds. Off she went to school. Claire typicallywakes up and within about 5 minutes is very hungry (aren'twe all) and on Monday and Thursday, she has OT. It isusually a race with her hunger to get her to school forher morning OT, where they work on her eating using switchesto tell what she wants. It is important that she is hungry,or the whole eating thing goes out the window along withthe lesson. She did great. She figured out the switchonce again and by the end of the session, she was hittingit faster than the OT could feed her. She was fired upto let everyone know she was hungry. Perhaps, we've createda little monster... heheheh.



Clairehad a fun morning, with more cuddles and attention thanever. Dad made eggs benedict and mom made blueberrymuffins and coffee... everyone was fat and happy afterbreakfast. Claire's friend was enjoying her and talkingto her much of the day, but had to leave by the earlyafternoon to get back. After the relaxing morning, Momand big sis went to a ballet 'function' for bonding...sort of a fundraiser and that was a blast for sis. Shegot to learn steps from the ballerinas and show whatshe learned. She also won a door prize... cookies ina Noah's Ark bag (with animal fingerpuppets in the pockets).After the 'show' they picked up Claire from dad and wenthome to get more Claire food. Then off to Claire's auntand uncles for some nice down time and dinner. What afun weekend. Claire got home and she was so hungry...she gobbled down her food and took her meds, then couldn'tkeep her eyes open... the thumb went in her mouth andshe was soon out like a light.

November4, 2006


Clairehad a very very busy morning. She was up early and fedwith meds then out to very cold temps... the wind wasblowing hard and her brother and sister had flag footballgames, the last ones of the season. Claire was bundledwith hat and blanket and mom's coat (like another blanket)and fell back asleep. After the game, the trophies forbig brother, but big sis will get hers next Saturdayat a party for the team. After flag football, the sittertook sis and Claire back home and mom, dad and Claire'sbrother went to the college game. Once that was done(and Claire's team won!!) A very sweet wonderful personcame to visit the family. Mom teases that she got herfriend 'on the Internet', but they have been in touchfor nearly 4 years, as her baby, Ryan, and Claire werenearly the same age... only a few months difference.Little Ryan passed away, January will be 3 years, andhe was an absolutely gorgeous baby. His mom shared pixof him, many that mom hadn't seen yet, just instillingin her how beautiful he was and what a great loss itis for his mother... mom regretted not meeting him duringhis life on earth, and no one would guess his life wouldbe cut so short. He was thriving pretty well up to thatpoint. Even getting 'too' fat. One pix was him only acouple days before he died, he looked perfectly healthyand happy. Amazing, we never know when our time is near.
It was BIG fun having her visit... mom was in stitches the wholetime. They planned their next time together and mom wonders whyit took so long for them to see each other in person (they'vewebcammed before). In the evening, very relaxing, mom made chiliand cornbread and it was yummy. Dad ate too much tho. Just askhim.



Claire-abelle the BovineClairehad a fun Halloween Day. She was up with mom and off to school after a bath. At school the children all put on costumes and paraded around. Claire was dressed as a turtle. Last year they dressed her as a skunk. Mom doesn't have pix, unfortunately.
After school and work, mom picked up Claire and ran a few errands. They went home to get Claire's costume and more food for Claire and then off to a Halloween party at a friends house. The weather was cool and Claire had on her bovine costume... she was adorable, of course. Claire at the pumpkin patchHer brother and a friend had pix on their shirts, one of a chick and one of a magnet... without his friend, mom called him a 'chick'. And big sister was a vampire, but lost her fangs/teeth just before trick-or-treating, so she wasn't in a great mood but that lasted only for a brief moment.
Mom carved a pumpkin earlier in the week and she took it to the party too, alongwith snacks to share.The neighborhood had massive amount of parents and kids allaround. Even some parents dressed up!  Our friends had tons of decorations, food and drink, andparents took turns walking the kids around while everyone else visited. We sat outside in lawnchairs and all the houses are decoratedelaborately, so parents don't mind taking the kids around to check out all the decorations.
There are friends from the kids school who live in the neighborhood sothey can all go around together. Claire went around in her stroller...slept through much of it... nice cool dark evening... she was snuggledin a blanket.One lady was giving out glow in the dark necklaces (and candy).  Shefelt it helped to keep the children safer - whata great concept!



Clairewas up talking a lot last night. Evidently, tho she wasdressed warmly for sleeping, the nursery was a littlechilly for her, and she kept rolling to her back andkicking off her covers, so she was just ready to partyand waiting for a familiar face to come join her. Momdid... several times... putting her back on her tummyand wrapping her warmly in her quilt... only to be beckonedonce more to the princess's room. That went on from about2am to 4am. Mom didn't want to, but she had to wake thesleepy baby up in the morning for school. She was fullof smiles and kicking (a familiar site from the wee hours).Claire seems to always be in such a terrific mood. Itmakes everyone around her smile, sometimes even laugh.She is a little nut.



Clairehad a fun day. She was up earlier than usual (probablydue to the time change this morning) and finished breakfastand finished her nap all before church. Not necessarilya good thing for the rest of the congregation, not ifthey wanted to hear anything other than Claire's happyvoice. Mom had to take her out and put her in the nursery.The ladies LOVED her... they held her and rocked herand mom went in a bit later to check on her and Clairewas full of grins having a great time. Now that she knowswhat she misses out on when she is quiet and sleepingduring mass, she may not have a Sunday morning nap inchurch again.



Claireslept great last night! Mom and Dad too.
She's been doing great with her switches, and now whenmom feeds her, mom says, "More Please" and usually Clairewill open her mouth wide and mom can put some food inthat sweet little mouth.
Claire has been doing well with her rashes too, thanksin part to the cool weather we've been having ... andshe's been full of energy too... again, thanks to theweather.



Claireslept great last night! Not a peep... either that ormom was sleeping very deeply.
Big apologies for not keeping up the journal as wellas she should, but work and sibs are keeping her verybusy these days. Claire is doing great and her familyis cautiously excited about how well she is doing. Withthe flu season coming up, you can see why they are cautious.It dawned on mom that Claire will be *4* in March...4 years old... wow.