Claire's Journal -- 21st Month
December 6  

Claire was up at 4am. Mom was guessing she was just hungry, so she fixed a bottle and they both got back to sleep around 5am. Claire drank about 3oz.
In the morning, mom got ready for work and woke Claire only to change her and wisk her out the door. She drank about 2oz in the morning and at daycare had another 5oz.
Mom picked her up at 1pm for OT and then took her back to daycare. Mom was a bit frustrated since the appts she is getting are kind of out-of-routine. Mom would love to make the appts for PT and OT a month or two in advance, and have them back to back -- but since the referrals are approved at the last minute (only once the previous one is about to, or has, run out) and only for one month at a time, mom cannot get appts without a valid referral. If she makes them, they are erased. When they are erased, the appts need to be rescheduled and mom has to confirm before each appt as it is time consuming to leave work, get Claire, and get to appt, and she wouldn't want to show up only to find it was an older appt that she had written down, but that had been erased.
So mom has some appts at 5pm, some at 1pm... and different therapists with each appt... when she can get them. For instance, she was only able to get one OT and one PT appt this week. And the OT was with a therapist who had never seen Claire, so much of the appt was them getting to know each other... if it were her usual OT, mom thinks even more would have gotten accomplished... but at the same time, the new OT was a wonderful woman and Claire really liked meeting her - Claire smiled for her a lot today. Mom definitely thinks ALL the therapists at Claire's rehab office are excellent.
Mom would like the consistency of one Occupational therapist and one Physical therapist each time (dreaming!), and she would like to make the appts far enough in advance (as she did when she got her referral for 3 months) that they aren't all taken, esp since 30 min appts don't seem to get much accomplished (and the copay isn't small, but the same if it is 30 min or 45 min)... but the bureacracy of the insurance and rehab system is keeping her from any normalicy in Claire's scheduling, it wastes time and keeps mom's planning off balanced making it easy to miss an appointment here or there. arg. This may seem so insignificant to some people, but to mom, it is so frustrating not to get appts made early, and even more frustrating to call to find all future appts had been cancelled for lack of referral, which is coming, etc. Why can't they let her schedule in advance of a referral being approved... and why can't they approve one for 6 months instead of one month at a time? (Stepping down from soap box... whew).

December 5  

Claire was up until after 3am. Dad put her down around 2am and mom took over after that. She was crying and crying and while it is probably very good for her lungs, mom wants her to be comfortable. Dad mentioned he'd given her some mylacon, so that wasn't an option for mom. She fixed her a nice bottle and they snuggled together on the daybed in Claire's room and mom fed Claire. It calmed her down and eventually she was able to get back to sleep. Still no ideas what her little problem was, but something was surely bothering her.
Mom insisted they get a new prescription for Claire's meds today. And after church, they did. Mom poured half the bottle into another bottle from a previous prescription and will draw dosages from that, incase somehow the bottles get contaminated with use. Another theory of mom... perhaps too much time on her hands --- yeah right!
Claire had a nice relaxing day, she fell asleep in church and continued sleeping most of the afternoon. When she woke up, she took her meds, from the new prescription, and had a fun day hanging out with the kids. Later, she went to a birthday party that her sister was invited to at a popular pizza party place. Mom took Claire, her brother and sister and dad met them later at the party. It was a nice evening, and once home the kids got ready for bed. Claire's brother turned on the Green Bay game and noticed they were down about 35-0, and he turned it back off again. Mom laughed and he turned it back on and watched with hope that Favre would pull off a win, only to watch him pulled out of the game... another blow. Not being in a good mood, he quietly took his bath and went up to bed. Claire went to bed around 10pm too, but only after fussing and her random cries. Mom is hoping for a good night.

December 4  

Friday was a typical day. Claire is starting to do her 'random' cry thing where she will be laying still and seemingly content and then 'jump' and start crying. Mom thinks it is time for a new prescription... and orders it.

December 3  

Claire had a terrific night.
Mom did too!
She was up bright and early, dad gave her meds after mom gave her a hair cut. Afterwards she had a wonderful warm bath and off to daycare. Oh yeah, she drank 6oz this morning before going to daycare, and her caregiver is taking her to see Santa today... along with 3 other little ones. Claire's buds, all going on a field trip to see Santa. Doesn't get much better than that. And with her new hair-do too!
Claire missed seeing Santa, but mom will take her a little later, once the kids get their lists made.
Dad opted to take the family out to dinner tonight, so it was steak for everyone... well... not everyone, only in this family can you go to a steak house and Claire's sister orders mac and cheese and Claire's brother gets a hot dot (substituting his side order for a Ceasar salad). Mom discovered the flatiron steak. Yum!
Afterwards it was frozen yogurt for everyone and then home.

December 2  

Claire had a terrific night. She had a fun day too, going to daycare and playing with mom in the evening. The family went out to dinner and Claire drank most of her her 9oz bottle. Then at home, mom ate her ice cream and fed Claire with her free hand, then Claire decided she didn't want to eat anymore, she was full. She layed in mom's lap and fell asleep. When mom went to put her in her bassinet, she didn't even open her eyes, much less put her thumb in her mouth. She was a very tired and full little baire. She had about 20 oz today.
Mom is noticing her winter wardrobe is a little small, so she needs to dig out the hand-me-downs from Claire's big sis and see what will fit this little-getting-bigger Peanut.

December 1  

Claire a good night. Mom was pleased, she needed the rest.
Claire had few appts today, so she just took it easy, eating a bunch and enjoying her Music Therapy. Claire drank about 25 oz today.
Mom finally found time to play with her new digital camera. It's her early Christmas gift from dad, who knew she'd need a little time to get used to it before the holidays came around. She needs a little more practice before she's a film producer, or keeps people from getting sea-sick when they watch the videos, so take some dramamine and sit back for Claire Premaire.... here's a few videos for your veiwing pleasure:

Video 1
Video 2
(warming up for her first opera) dialup   
Video 3
(bath & smiles) dialup
Video 4 (music therapy)
Video 5
(Red Dog)

To See the video, you may have to download Quicktime from (free).
For dialup connections, you will need to download RealPlayer 10 (free). The quality isn't as nice.
Please send your feedback to Claire if you have problems seeing the video, they take too long to download, or you didn't have problems at all... this way she can determine if she will post more.

November 29  

Claire was up until about 1:30am. Crying.
Mom suspected a bad tummy ache and gave her some mylacon, hoping it would help, but it didn't. She gave Claire some tylenol also, just in case it was teeth, or something mom didn't understand.
Dad woke Claire up around 9am, for meds and breakfast. He took her to get her flu shot, and then to daycare. Later he got her for her PT, she had a good day, then took her back to daycare.
Mom picked her up from daycare after work and Claire finished the 3oz she had in her bottle. Mom made dinner, helped the kids with homework and fixed dad's Palm (PDA) and talked with grandpa on the Internet during all that. She was busy. Dad fed Claire and she drank about 6oz more before going to sleep. Mom gave her meds early tonight, as she had a jump-then-cry episode, usually a prelude to a seizure, so she thought she'd better give her the early dose and call to order new meds soon. Claire was asleep in her swing about 9pm, guess watching mom on the the puter wasn't exciting enough for her. Mom put her in her bassinet in her room and will wait and see how the peanut does tonight.

November 28  

Claire had a nice Thanksgiving.
She travels so very well, and she enjoyed visiting Grandma and Grandpa and all her relatives. She recieved lots of attention, and sometimes, none at all... which is also nice sometimes. She slept most nights and averaged about 20oz per day.
She battled constipation and still kept her nasty, loose cough, but all in all, a fun holiday!

November 23  

Claire slept well last night.
Her sister did too, but continually coughing today. Mom had given Claire's sister cough medicine and decongestant last night and this morning she has a mild fever of 100.
Claire still has her stuffy and runny nose, but drinking well and had 5oz of shake for breakfast. For lunch, she will get shakes without formula, just fruit, pedialyte and barley, to help curb the congestion... and a bath, she's not had one in over a day or so as mom doesn't want her to catch a chill... but will crank up the heat in the house if she has to.
Mom called the drs office to see if the girls needed to be seen. There are no appts left today and they close tonight for the holidays, so they said they could go to the urgent care center. Since it seems like Claire's sis has only a cold, and Claire will be seen by her hospice nurse today, mom will play it all by ear to see if the girls need to go in. The drs office said that hospice should call them if Claire needs anything. At least the kids won't miss school. And mom is still working from home.

November 22  

Claire slept great last night. The past couple nights, mom has put her on her side and she rolls over onto her back and sleeps hard. Mom also noticed that lately she hasn't been snoring. That's kinda neat.
Claire woke up this morning with a runny nose. Mom gave her some decongestant, as she didn't want to eat. Looks like she may be getting a little cold. She will need lots of rest to get better by Thanksgiving. Afterall, there's just too much fun to be had when family comes together!
Claire had fallen asleep around 6pm, but up again at 9pm and mom gave her meds then.
Claire's big sister was watching tv and almost fell asleep, around 5:30pm. So mom let her have a bowl of cereal for dinner and got her off to bed. She was asleep by 6:30pm and had a fever by 10pm of 101. Mom gave sis some tylenol and dad went up to sleep with her for most of the night.
Meanwhile, Claire didn't want to be outdone with attention, so she developed 102 temp, along with her nasty runny nose. Mom cleaned her up and gave her tylenol, along with her regular meds and a decongestant and Claire ate relatively well.

November 21  

Claire was up for church. Mom gave her a quickl sponge bath and picked out a cute outfit for her to wear. She was asleep the first half of mass, and drank a few oz, then Grandma held her and she fell asleep. She slept all through breakfast and then she slept for much of the afternoon. Mom fed her more when mom got up from her nap, it was a long night last night with the late football game yesterday and lots of family and friends visiting.

November 20  

Claire slept well through the night, and she knew she'd need her rest because there was big fun in store all day today. Lots of friends and family over for lunch and a fun football game in the evening. Claire didn't get to go, but didn't even notice as she was asleep by 10pm, but up again around 1am, as everyone was stumbling in from the football game. Claire's team lost, sad, but next year will be better for them... and Claire may have a few more team outfits by then too! She's thinking of burning the ones she has, as they didn't yeild wins like she was hoping for.

November 19  

Claire was up only once with a cry, but quickly went back to sleep before mom even got out of bed, around 4:30am.
Mom woke her, she was in snore-mode, for her meds and for breakfast. Once she finished about 7oz, mom gave her a bath and then off to daycare.
Grandma and Grandpa are coming for a visit, with a couple aunts, and the kids are more than excited!

November 18  

Claire had a great day and a great night. She didn't drink more than about 23oz today, but was a very good baby with lots of smiles today.
She had her RSV shot today, so mom picked her up early for that and soon after they were home with the kids and dad for a nice relaxing evening of grilled cheese, tomato soup and nutter putter cookies for dessert.

November 17  

Claire had about 30 oz today. She enjoyed a nice Wednesday tho her PT appt was cancelled, due to insurance problems. Evidently, Claire ran out of visits before the referal period ended. They gave her 8 visits for 2 months, but she goes to PT twice a week, so it was inevitable. Mom only found out just before the visit as the PT called to tell her she was out of visits. Mom spent the next 35 minutes on the phone (34 of it on hold) trying to get everything squared away. Of course, by the time it was resolved, the appointment time had ended, so Claire couldn't go, but it was time for her OT, and they made it there a couple minutes late. She hasn't had OT as often, so she still had a few visits left, but with the new increase in visits, things were looking good. Mom had to call the insurance back during Claire's OT visit to remind them to fax the new referal to the Rehab office. Once it came, she was able to reschedule Claire for that afternoon.
After OT, they had about 45 minutes to burn, so they went home and mom got some email responses out and then back for PT. After PT, Claire enjoyed Music therapy and her hospice coordinator came by for a visit too. Then the kids came home and dinner and baths.
Claire had a nice bath and went to sleep like a charm after her bottle.

November 16  

Claire had a great day. She seemed to not be able to drink enough all day. Mom is going to have to make the shakes a little thicker to keep her appetite in check (never thought we'd be saying that!).
Claire drank 32oz of shake today. Must be a new Claire Baire record!

November 15   Claire slept through the rest of the night after waking up at midnight. She was hungry and mom fed her about an oz before she looked too tired and uninterested. So mom put her back in her bed and she eventually, quietly fell asleep.
Mom woke her in the morning, and she wasn't sweaty as she usually is. A nice 6oz bottle with vitamins and change of diaper and Claire was soon off to daycare. Claire fell asleep before leaving and once she hit the cool air outside, mom thought for sure she'd wake up, but no, she continued to sleep until she reached daycare and was just fighting to wake up, she opened her eyes a bit while mom took her from her carseat and put her in a playpen in a dark room at daycare so she could go back to sleep. She appreciated that.
November 14   Claire slept pretty well during the night, and she was in a good mood in the morning as she usually is. After meds and a bottle, she was off to church and she was awake for the full mass. Still full of smiles and finishing off her bottle. When she got home, she drank more, this time, formula/ped, and drank about 4oz before mom put her on the floor on her side. She seemed disinterested in the food, but still awake. After a quick visit to the fabric store, they were soon home again and mom fed Claire some and they did some bicycles with Claire's legs and then mom worked on Claire's sister's indian costume while Claire hung out in her swing by mom, and eventually fell asleep.
She was up later, hungry and had another bottle and bath. Then off to sleep.
She had 16oz of shake today, and 4oz of ped/formula. If she stayed awake longer, she probably could have eaten more, but lately, when Claire decides she's tired, it is difficult to wake her (short of turning the ceiling fan on high and taking off her socks, but that's kind of a rude way to wake her and that is mom's last resort).
Claire was in bed and sleeping by 10pm.
November 13   Claire had a lazy day. She was up drinking her 8oz of shake fairly early, then just hanging out in her swing part of the day and her boppy pillow part of the day and her side on the floor watching tv part of the day. Mom had some sewing to do, and dad fed Claire two more 8 oz bottles later in the day.
She had over 24oz for the day.
November 12   Claire slept through the night but was up at 5am and hungry. Mom gave her meds and fed her 4oz and put her back to bed, she was tired and full. Mom woke her again for a sponge bath as Claire was sweaty from sleeping, and then off to daycare, she downed another 4oz before she got there, finishing off the last few drops when she arrived. She's showing no signs of seizures and her appetite has picked up. Mom is thinking it is the new meds bottle.
But mom knows that all Claire's problems seem small when there are more heart-wrenching things going on in the world. One of them close to mom's heart is the passing of Baby Luke, the little boy who's mom went to court to help him thrive.
November 11
20 months
  Claire was up much of the night, finally settling down around 2am. Mom isn't too sure what the problem is, but hoping that changing to the new meds bottle will help her out some.
Mom got a call that Claire's PT was cancelled (after it was changed to today from Wednesday). Her PT was out sick. Then a call about her OT appt today. Seems the Insurance company never recieved info to 're-up' her therapy from the ped office. sad. So now Claire had to have her appts cancelled until everything is approved. And there is now a chance that it may not be, so fingers crossed.
She had a nice relaxing day, waking up for her morning shake and then going back to sleep. She slept for a couple hours in the morning, then mom woke her to drink more and play. Mom tried to keep her up most of the evening, but by 8pm, she was passed out on mom's chest. Who could blame her, the only football game on was very slow, two very good defenses, but little or no scoring. Mom enjoyed the second half, and Claire was fast asleep in her own bed by then. Dad had to watch the game in the family room, as the team did much better when he was out there. Too funny. Ol' dad can be supersticious sometimes.
Mom was in bed before midnight. Dad followed in sometime afterwards.