Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 47

February 10


Today Claire's brother is having a sleepover with a few other now-teenage boys. Should be fun, but mom is impressed at how well Claire's brother can clean the house.
The boys came over and played football and basketball much of the evening and then came in to watch movies and eat and eat. Mom baked a chocolate chip cookie cake with peanut butter chips added and it was finished up by the end of the night. Dad's men's club at the church were selling Boston Butt roasts and they were delicious. Dad was busy much of the day helping out with that and he brought a large one home, so mom invited the neighbors over to help them eat it, and hardly put a dent in the roast. It was most delicious... and very large! Mom also had a pizza delivered for the boys, half of which opted to eat the roast.... smart guys. Mom went to bed before the party was over... she couldn't hold out as long as the boys, and dad was up with them. Only one of them made it until 11pm, the others were worn out, probably all that fresh air earlier in the day.

February 9


Today is Claire's brother's birthday. He is going to a dance tonight at the school and looking forward to it. Mom and dad took presents to his room in the morning and woke him up, he was a very happy guy today. Claire slept through it.

February 7


Claire slept in so mom could work, then mom heard her talking and playing, so she got her up for breakfast, then Claire opted to go back for a mid-morning nap. Mom was fine with that and knew Claire needed to be rested for her PT today, and mom had more work to get done.
Mom woke her before PT for lunch and bath, dressed her in her exercise clothes and dried her hair, then off they went. The therapist had a great idea to help Claire's scoliosis, but it is actually kyphosis (back bending forward/hunching, whereas scoliosis is bending side to side, following the spine would be like writing and 'S' on someone's back). Claire probably has both, but one thing at a time. Her idea was to put some stretchy tape on her back. Mom was curious, but for starters, last week, she put a small piece of tape on Claire's skin to be sure she would have no reaction. This week, it looked fine, so she slowly took the tape off with lotion/oil and proceeded to measure and put the tape on either side of her spine. She used 2 strips of about 1/2" wide pieces and about 7" long or so.
She also put a small piece on mom's finger, so mom could see what it was like. The therapist put it on in such a way as to 'remind' mom to keep her finger straight. Nothing is wrong with mom's finger, it was just an experiment. It was a bit annoying, mom took it off shortly after she got home. Claire also fell asleep around then. Mom wanted some tape for her own back, to remind her to sit up straight. The therapist thought that was a good idea. Mom also thought maybe one day, they could put it on Claire's elbow, to remind her to not bend it so often (to put her hand in her mouth). The tape allows the flexibility to put her hand to her mouth, or anything else she wants to do, just reminds her not to. Mom also asked about putting it on the side of Claire's neck, to remind her not to move her head to the right so much. PT said it was a good idea and then told mom not to put it on too many places at once, three is the limit. Mom loves a new idea.
She'll post more info on the resources page of Claire's site. PT also said it was big overseas, in Asia, and everyone used it for a lot of things. kewl.

bright eyes

February 6, 2007
20 lbs!!


Claire went for a follow up appointment at her dr's today. Odd thing is, mom couldn't remember what the follow up was for... guess that is a good thing? So mom and the dr called it a well-child visit and Claire was quite well. She stood for her doc when he came in... mom assisted. As her doc was examining her, she was kicking and kicking, even missing him a couple times. She sat on mom's lap with her legs folded while mom held her legs and her dr talked with mom. She watched her dr closely and gave him a half smile. He thought that was cute, so mom gave Claire a little tickle and she gave the dr a very big mouth open grin of a smile... showing all her teeth. He said he was so amazed with how well she was doing. Mom was beaming with pride the whole visit.
Claire weighed in at 20lbs and even another 1/4 lb, to account for a full diaper and her shoes. Life is good.
Mom is working on upgrading the website, so with a little patience it will be done soon. She never anticipated having 48 months worth of journal when Claire was born and she started this blog. It is a lot of information to keep organized and now the site needs some updates to be a bit more manageable. It will be easier to add images, videos and all and be easier to find them ideally. Probably nothing too noticeable, but mom will notice when she updates the new months. And afterall, it is all about mom!


January 31


church readyClaire had a nice day today, went to PT and did some nice sitting and kneeling... mom said she was a natural since she is Catholic. She also ate well and took a nice nap after PT so mom could get some work done. In the evening mom chose to work on her website some, and it was movie night. Still a somber day, remembering Claire's buddy Ryan, who passed a year ago. He would be 4 today. Probably why Claire isn't in her usual calm mood... she was loud at PT and kicking all during the movie... like she just wanted to get up and move around.

January 25


Claire has been doing well. Mom feels like she isn't entertaining Claire as much as she should be... she's trying to get over that. Claire is sitting in her lap tonight as she is working on the computer. Claire sits great with her elbows on the desk and even hitting the mouse randomly, making it a little more difficult tof rmom... she goes for the keyboard every now and then too. Mom would love for her to learn to communicate and sent an email out to someone in the school system to see what they have to do to get Claire into speech therapy. Next month, Claire starts her PT every week with the private pay.

January 17


wiiild hair day!Claire was up pretty much the whole night. Mom and dad didn't sleep either.
It started with the rash on her face. And since it gets worse when she sleeps (thumb in mouth, drooling, sweating, rash develops), mom put her arm band (to keep her from sucking her thumb) on her right arm. Leaving her left hand available. Claire didn't like it and was up letting mom know... she wasn't crying, but talking... a lot. Mom went in around 1am and took off the arm band, and Claire was most content, until about 2am when mom heard her gagging... putting her hand down her throat. So on went the arm band and back to listening to Claire squalking again. Sleep is for Pansies... who needs it anyway.
Mom had a meeting and dad watched Claire and got her off to her PT (private pay) and mom met them there after the meeting. Claire did fine, but has had better days with her standing. She did quite well with her sitting and propping. Mom and Claire came home and after mom took a breather, got some work done.

January 11


Claire had a good day. She was up for diaper change and meds and then out the door to OT at her school. Since they want to work with her eating habits, they pretty much need her to be hungry. Mom decided she may just get her up earlier to eat and hope she is still hungry by the time she gets OT. This morning she had a bit of a 'spell' where her little lips looked blue and her fingers where white. Claire's teacher, OT and mom all massaged different parts of her to get her pink all over again. Mom probably should have been more concerned, but Claire didn't appear to have trouble breathing or have any problems with seizures, from what mom could tell, so she didn't appear as concerned as the OT and teacher.
Today is dad's birthday, so the kids got him up early in hopes of going to breakfast. When that didn't pan out and the gifts were open, mom made danish so they wouldn't be too disappointed. Sometimes it is about the kids... eh?