Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 54
|September 10||Claire had fun today in the pool at her school. Mom arrived as they were coming back from the pool. She ate well today and had a fun day at her school.|
seems back to her old self, eating well (loves the mashed potatoes
best, dad makes them with soy milk, butter and salt - even mom
thinks they are quite tasty).
One of her teachers from her school came by to watch her and her big sister for the ball game. It was good for mom to get out of the house, she hadn't gotten a sitter in a long time.
|September 6||Claire is back in school today. After two nice days at home with mom, she is ready to go play with her friends. She had a great day.|
|September 5||Claire's PT was not scheduled today as the therapist is out of town. Mom worked with Claire on standing a bit, and always works on sitting. When they watch tv together, mom sets Claire up between her legs and Claire sits like a big girl, often kicking her feet with happiness.|
|September 4||Claire had a low grade fever this morning and after her throwing up the previous day, mom opted to keep her home today and she stayed home with her. She wants Claire back to her old self before exposing her to even more germs.|
went to visit her grandma for Labor Day weekend. She traveled
great and had a fun time. Mom worked on fattening her up and
Claire opted to throw up... overall she kept most everything
down, however on Saturday night she decided that she was going
to run a little fever and not keep anything down. By morning
she was much better and back to her old self.
On the way home from grandma's, Claire threw up in the car. She's really great about giving the family warning. She tends to cough, then go into gag mode before she actually cuts loose. It has become so noticable that even Claire's sister runs for a cup and holds it under her chin. Fortunately, on this trip, it was such an occasion and it was all caught in a cup. What happened after was quite odd...
Mom was holding a cup of throw up and opted to make dad stop so she could clean up the cut (esp given such an episode could happen again and the one cup she had was full now). They stopped, mom got out, took the cup into McDonalds and rinsed, the washed then dried it and got back into the car. As they looked over at the interstate, they noticed traffic traveling slower, even starting to back up a bit. Mom thought it was a bit irritating, but they got on the interstate anyway as any other roadways would take way longer. It was not a bad idea in hindsight either, tho it took the family 8 minutes to go one mile, they only had about 2-3 miles to go before they came to the accident. The accident was a pick up truck which evidently flipped over a few times and was in the median.
Mom was ponding the situation and (here's the odd part) wondered about how things ultimately played out... if Claire hadn't thrown up, would they have been much closer to that accident?
Or maybe this accident slowed them up for one potentially farther up the road... well, mom knows that Claire is a miracle in the familie's lives and plays a big role in how things go on.
as usual, then get the kids early for physicals, all three at
the same time, same dr's office. How much more convenient can
Claire came in at just over 19lbs. Her weight is down, but that is expected with the crud/congestion and the throwing up she's been dealing with. Her big sister came in at 95th percentile for height. wow... and next week starts ballet. Big brother got a good report as well and got his physical form filled out so he can play sports at school. After the physicals, the family was home packing so they could visit Grandma and Grandpa tonight.
|August 29||Claire had a pretty good day. She went to daycare late in the day and was picked up early. Mom had made a promise to her big brother that they would go to the Moore Center dining hall to see the FSU football players at lunch (kids had half day), get posters, see trophies and generally get fired up for football season....so Claire got to go to school during that event. Dad took Claire's sister to sign up for dance lessons. They were both pleased, however when they got home, big sis decided to cut off the tag on the leotard and ended cutting the new leotard (not cheap mistake). Mom will sew it and it should be as good as ...well... not new, but good.|
|August 28||Claire was up and out to her school. She had her big hair as usual and mom knew the teachers would tackle it during the day. She ate great and seemed to have kept it all down. Mom asked the teachers to give her only pedialyte and not tap water. Claire isn't really used to the water from the tap, and mom is thinking it could be upsetting her tummy, so for a least a while, they will be supplied with enough pedialyte for the day. Mom is very pleased that Claire is getting so many liquids now and includes her miralax whenever possible and noticable improvements on Claire's bowels as a result of more fluids and the miralax.|
|August 27||Claire was all 'school as usual' and happy to go. She's been so happy lately mom can hardly stand it...certainly is contagious!|
|August 26||Claire woke up for church and was ready before anyone else. She was so good in church and hung out with the family. She started snoozing by the end of mass in her daddy's arms, but was awake shortly afterwards. Everyone went home and cleaned the house... it happens on occasion.
The family had friends visit for dinner and it was so fun. They have two small, very adorable, children who were well behaved and it was very nice having dinner and hanging out, very casual.
|August 25||Dad was gone much of the day as his band had two gigs... they were at the local Catholic church in the morning and a wedding out of town in the evening. He was home late, but happy to bring in a little more income for spending money.|
|August 22||Claire was home with mom today and went right back to sleep after her breakfast... a good opportunity for mom to get some work in. Claire woke in time for snack and then off to PT where she did great standing and looking strong and tall. Claire's therapist and mom were both very proud of her improvements and showing strength.|
|August 21||Claire was up early (for her) and had a snack... mom finished getting ready and then off to school for breakfast. Claire was a happy, squirmy kid today.|
|August 20||Claire had her first day of school today. Her teacher was very excited to have her, she has a new teacher this year. The teachers' aids are from her summer program, so they know Claire. Should be a really good year for Claire!|
|August 19||Claire had a super day. She kept her food down really well and mom switched her to solids-ish and she did great. Mom probably overfed her in the evening tho, as dad said she seemed uncomfortable much of the evening. Claire didn't sleep during mass this morning, mom thinks it was a bit chilly... When Claire doesn't sleep, she is just talkative, so mom and Claire hung out outside the church much of the morning until she got it all out of her system and quieted down some.|
|August 18||Claire's day seems to be better than yesterday. Only one sighting of used food today. Mom is still pushing the pedialyte with some solids(sort of solid) few and far between... she seems to be doing well with it all. Fingers crossed she will be well enough to go to school when it starts on Monday.|
was up not feeling too great, Claire was about the same... not
really keeping food down, but keeping down the fluids. Mom started
the day again with cola and that came back up with much phlem,
so mom saw that as a good thing (Claire, not so much).
After that she seemed to do pretty well. Dad came around late in the afternoon and took his shower feeling a bit better. Mom stayed home with the two of them. Got some work done and pumped Claire up with more fluids - which by the way, she really seems to like a lot.
was up at 2am, so was mom. She was trying to throw up and having
dry heaves (dh) and mom was there holding the cup under her.
Again at 4am, same thing... so by 4:30, mom decided just to sleep
in Claire's room on the daybed. Claire's temp was 98.9 under
In the morning (later in the morning), mom woke Claire for some cola... she eye dropped it into Claire's mouth, thinking if there were phlem bothering her, this would bring it up and her day could continue with meds, then with pedialyte (with miralax and duocal).
Mom is guessing it is one of two things (or a combination of the two)... 1. is that she could just have some drainage causing her to gag, even without her fingers in her mouth or 2. she is so constipated that it comes back up. Her tummy doesn't look distended in any way, but mom is pushing the fluids (for reasons 1 and 2) and adding miralax once a day (for reason 2 - just in case).
Call to the dr's office resulted in 'take her to ER - dr is out of town', but her diapers are wet and mom isn't ready for all that right now. Instead, if that is all they've go, mom feels they can do that over the weekend anyway, so they will wait a bit to see how the above measures work out for them.
|August 15||It was a crazy day. Starting with Claire's PT appt, usually at 12:30pm, mom had it on her planner and it is always added there when the appt is made... mom showed up to find out the appt is at 4pm. Not happy, but left to go join dad and sibs at their school for orientation day... very hot out, parking lot was fuller than ever (as every parent was there for mass, then orientation). Mom parked and took Claire to the office where it was cool and waited for the orientation to start. After meeting teachers (they knew already) and gathering materials, it was off to go back home for mom to feed Claire and get back to work. Claire was gagging and throwing up much of the day, but great BMs in the evening, so mom isn't so concerned.. she seemed to keep down every other meal... time will tell. Each bit that comes up usually has phlem, so mom will work on cutting that tomorrow with some cola.|
|August 12||Claire had a nice weekend visiting grandma, grandpa, aunts and uncles and cousins! She did great until this morning, when she had a minor seizure then thew up. It was just before they left for mass, so mom stayed home and send the others on to mass. Mom went later in the day with her sisters and Claire's brother. Overall, mom felt the seizure caused the throwing up, and the seizure may have been from Claire throwing up in the middle of the night, perhaps her meds came up then and mom didn't notice in the dim light... mom will just keep the food going in and see how things go.|
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