Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 40

July 10


Claire had a good day at school, but didn't eat much. She ate really well at home. The family went out to celebrate Claire's big sister's birthday (tho it was yesterday) and that was fun for everyone. Claire slept through it all.

July 9


Big sister's birthday today. She got presentsin the morning from her family. Mom took the kids to church and was frustrated with sister's behavior, so much for a fun day if it starts out like this. When she got home, her daddy had her go to bed and big sister fell asleep once her head hit the pillow. It was a fun weekend and so many festivities, so it was only normal she should be cranky.
Claire's uncle and family went back home today. It is always sad when they leave, they bring so much more life and laughter in to the house.

July 8


Big day for Claire's sister. Its her bday party, tho the actual bday isn't until tomorrow. Mom felt that Claire's sister needed a big celebration, as Claire does tend to get a lot of attention, esp around her birthdays. So this time, someone else got the attention, and ate it all up. Claire had a grand time, being held and out in the fresh air. Oddly, the air was cool much of the day and even Claire didn't seem to sweat. Yeah! In the evening, the family settled in and enjoyed catching fireflies in the yard and sitting on the porch. Mom helped a friend with her computer viruses, mom loves to do that every now and then.

July 7


Claire's Uncle comes into town today with his family. His wife and 4 girls from ages 16 to 3. It is always fun having them around. In the evening, the oldest watched the kids while mom went with the adults to see daddy's band play. It was a nice evening, and mom enjoyed getting out.

July 3


Claire was up early and mom got her up and fed before mom went off to work. Dad's watching the kids this morning for the first half of the day, and mom will watch them the second half. Claire's daycare is 'off' this week, so mom and dad decided to keep all the kids home and work out a schedule for watching them. Claire is doing well, eating well and working so hard on her standing.

July 2, 2006

  Claire had a good day, talking and squirming through mass, until her dad held her, then she fell right to sleep and her usual snoring had people turning heads. In the afternoon, she had a good time in her stander, then ate great in the evening and played with her toys on her tray while sitting in her chair. mo Mom works with Claire on standing before putting her in her stander. In the evening, Claire was really trying to straighten out her body so she could stand taller (that also means more weight on those little legs of hers) and mom and dad were very proud. Claire really wants to run with the big dogs (big kids) someday! She's working so hard to get that dream to come true, and mom isn't holding her back.
She was rubbing her eyes early, so mom had her in bed by 9pm. Mom was in bed by 9:30 and heard Claire in the monitor blowing bubbles.

June 28


Claire had PT today and mom got an A+ for all the work she and Claire had been doing. The therapist could tell when she put Claire on the ball, tummy down, and slowly set her feet on the ground, and Claire stood against the ball. The ball still held much of her weight, but Claire was pushing against the ground and keeping her legs fairly straight - straight enough for the therapist to only use one finger to hold the ball in place and Claire was balancing by herself... The therapist looked at mom in awe! Mom knew Claire could do that, she'd been working daily with her, but the therapist hadn't seen Claire in 2 weeks. The therapist said, 'time for a bigger ball'... meaning, one where Claire would be more upright and bear even more of her own weight on her legs. Patience and Persistence. Eventually, mom would hope that Claire would be able to hold onto the side of a coffee table, but she would need some 'gripping action' in those little hands of hers, and she has no desire to hold a toy, much less the side of a table.

June 26


Claire was fussing last night. Around 11:30pm, her dad gave her some mylacon and thought maybe she was just very congested. At 1am, she was up again and he was still awake, so he settled her in. Mom is thinking it could be those molars still working their way in too.

June 25


Claire was up at 5am. Well, she was really up most of the night talking, but at 5am, she was a bit more fussing than talking, so mom went in to get her. Claire was on her back - that's party mode for her, and met mom with grins so big it should have torn her lips... big teethy grin... and little snickers to go with it!. Mom grinned back and gave her meds early then fed her. When Claire was up for church later, mom didn't need to give her meds, so she fed her more and got her dressed. Claire was kicking and squalking. Went to mass and was very loud. Mom took her out into the hall and fed her some, but she was just so full of energy the whole weekend. She was kicking and smiling and having one big party. Mom thinks that since she didn't get her meds JUST before mass, that she'd already 'slept them off' and was ready for silliness. Overall she had a great weekend.

June 24


Claire slept great all week. yeah!! Mom took the kids to Claire's uncle's home in the afternoon to swim, but slept the whole time. Mom has continued to work with Claire's standing and she does great going form sitting on the floor to standing with trunk support. She has increased the amount of time that she wants to stand now, and mom's arms get tired supporting her.

June 18


Claire slept through the night... she was up for her breakfast, meds and a bath before church. She was a bit full of herself in church as she was noisy. She settled down after a bit when her dad held her, but he started tickling her a bit as mass was ending and that got her worked up again... smiles and Claire-giggles.
Her daddy had a nice Father's Day as he was showered with gifts just before church, and mom helped him with breakfast while getting Claire ready. French toast was on the menu, along with bacon and scrambled eggs. Claire got home from mass, ate more food and off for her nap. Slept a good part of her day away and mom went grocery shopping for a nice steak for Father's Day dinner. Got home, woke up Claire, started dinner, fed Claire, did some PT with her (her standing is improving) and then put her in her stander for 40 minutes, constantly monitoring her little knees and adjusting as needed. Claire did great. Her knees were a little red, but not bad... they were better before they knew it.
(Here's a picture of her with her chipped tooth fixed.)

June 17


Claire slept through the night... today starts Father's day weekend, so mom was up fixing dad an omlete and some cinnamon rolls (so much for his diet). Afterwards, Claire took a little nap and mom cleaned up, nagged Claire's sister to clean her room so they could go swimming at her uncles, and once Claire was starting to wake up, mom went in to clean Claire's room... it really needed a good straightening up.
In the evening, dad got his choice of dinner (remember, Father's day weekend) so he wanted stomboli, so they ordered for delivery... yum. Claire had a great evening, she was full as she could be before bedtime and once in bed, was out like a light.

June 15-16


Claire had routine days of getting up and going to school. She's doing well in her summer school, tho not eating great, esp on Friday as she had a bath in the morning, and that usually makes her very sleepy. She made up for it in the evening finishing up 3+ cups of food for the day. Mom is working on giving her miralax with 4oz of pedialyte. It is very painstakingly slow getting it all in (or most of it), but worth it, and she does need the fluids.

June 14


Claire slept through the night... mom is letting her sleep in a bit this morning.
By the way, Claire is a cover girl (opens a .pdf file). If you can't open it, click here.
Claire had PT today. She did well. Her therapist has her working on more time in her stander and maybe getting her back in her Johnny-Jump-Up so she can practice her standing, and maybe even do some bouncing, as she loves laying on her back kicking. Mom put her in it when they got home (and after her nap) and she did fine, as she had done before. Nothing exceptionally new. Mom will need to get a routine of time for her to stand in that and in her stander.

June 13


Claire was fussing, and mom went in and fed her about 5-6 oz and put Claire back to bed. Claire 'talked' for a bit before finally settling down. Probably all the wind throwing the rain against the windows that woke her. The storm came through today and no real damage in Claire's town. Lots of needed rain and the trees were cleaned up of old branches and pine needles. A light rain came down most of the day... something they haven't been used to.
Claire kept her breakfast down and was off to school. Mom asked the teachers to keep her awake until noon, when Claire had a dentist appt and mom would be by to get her. They did a great job and fed Claire about 3 oz. The teachers mentioned she didn't want more, and mom was glad of that only because if she'd had much more, they wouldn't be able to keep her awake (not too often you will find mom wanting to keep Claire awake AND not eat much... so mark this day.. but to get away with no drugs to put Claire to sleep at the dentist is worth it). Mom grabbed some more food and a blanket from her school and headed out to the dentist appt.
Claire did great at the dentist. When they got there, mom fed her more food (it would not only help her be tired, it would also help keep her hands out of her mouth). Mom also brought in one of her sweaters to wrap Claire up in and get her warmed up (good thing too cause it was a bit cold in there). Mom layed on the dentist chaire with Claire and the peanut's arms were also wrapped up in the sweater. Mom was expecting to get her to sleep, but the dentist thought they could try with her just being tired. Claire did great opening her mouth for the dentist while they filled in a defect in the tooth (mom thought it was a cavity from poor brushing, but the dentist said it was a defect in the tooth when it came in). It was her front right tooth, and mom thought if it wasn't fixed, it would get bigger and eventually she could loose the tooth from rot, and knowing it took a long while to get those teeth in, mom didn't know if she'd lose it first. And didn't want to take the chance. The dentist also filed down the same tooth... just a tiny bit to get rid of a sharp edge that looked like a chip, but likely part of the same defect. This will help keep Claire's hands from getting too scratched up from that sharp edge, as she usually has a hand in her mouth - mom's working on that too). In the 'expressions of Claire' pix from late April, if you look closely )click on the pix to make it bigger), you will see the 'chip' in her tooth. Well, it is fixed now, and the 'cavity' is filled and mom has one less thing to worry about.
The dentist did it all without any medication for numbness or sleep... shows you how good Claire did...she's such a good child.... (and the dentist was very good too!) and Claire's teeth look great - all things considered (her bottom teeth stack up like dominos against each other). Mom will need to post some 'after' pictures. The dentist also noticed that Claire's molars had recently just broken through. Hmmmm... maybe that explains the unexplainable throwing up that unexplainable disappeard?
Claire went back to daycare and mom went back to work within an hour of the appt. Claire did great at daycare, no throwing up, some eating, but mostly sleeping (from not having a morning nap). When mom got her, she was hungry, so they went home and filled that child up with food, and she was happy. Meanwhile, her sibs got haircuts and were not happy in the least about the situation, until sis got a cut hair-do after her cut, and she was pleased.

June 12


Mom called the dr this morning to see if he could see her. Evidently, he really wanted her to go to ER on Friday for tests. Claire looks good to mom (considering) and just wanted him to look her over, but he insists that the tests results could come back much faster if she goes to the hospital. So mom is leaving for the hospital in a moment with her. Hopefully, they will just have tests and get sent home... tho mom knows that isn't likely and will update on Claire's weekend when she gets a moment. Overall, she kept much of her food down when given a little bit, but when she'd gulp it, it would come up, even then, not all of it came up. So she kept much down. Mom understands she needs to be back on solids and keeping it down. She had a fever every morning (not this morning) and yesterday it was 101.7 - the highest all week.
And a tropical storm is coming by us... hopefully it will just drop a little rain and blow the rest of the pollen from the trees. It is the least of mom's problems right now.
Mom and Claire signed into ER at 11:30, and after Claire got an xray and a suppository, it seemed that she was very constipated- with only a trace of dehydration (from a urine sample they took)... they went home at 3:30 and Claire ate applesauce and prunes when she got home (and loved them). Mom is relieved (and hopeful) that is all that is wrong with her... she's been having stools, but evidently there was more. Evidently, constipation can cause nasuea and even slowness of breath (fortunately not for Claire) so mom is waiting for the big stool... and put Claire down for a rest, but she's fussing... maybe because she doesn't want to sleep (she's gotta be sleepy) or because she's working on filling that diaper.
She gave mom the 'what for' a minute ago... mom put her down (overcast outside - no rain yet - so the room is cool and dark) and mom didn't want her to sleep for too long, so she put the light on... Claire was on her tummy and rolled over a bit and looked up at mom as if to say, 'what the... I'm trying to sleep here, can you put that light out?' and mom turned it off, Claire rolled back to her tummy and settled in. Mom told the dr's office they could get the results from the ER visit (evidenlty they know how) and she asked dad to pick up batteries... surely the electricity will be out tonight or tomorrow, the storm is getting a little stronger and Claire will certainly get some of it. For now, that is the extent of the family's emergency planning. Not too smart, but there's enough supplies leftover from past years, so they should be good.
Claire had a nice evening. She ate about 10+ oz, and threw up maybe 3oz. But that was probably mom's fault... Claire kept eating and mom kept spooning it in... guess the 'overflow valve' (as Grandpa calls it) kicked in and up came the food she couldn't fit in. Mom wasn't too concerned with it... she still kept down about 7-8oz from the meal, and that's a good amount. Claire went to bed and mom followed... hoping for a restful night.