Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 49

May 8


Mom realized this morning that the Peanut has been on Motrin and Tylenol for the past 4 days or so, and so the break probalby hadn't hurt her quite so much.  Needless to say, she will be on it longer as well.  It is still blowing my mind. She feels bad that she didn't know and couldn't sense it... but feels a little better knowing that she didn't either.  Last night was the first night Claire seemed in pain from it, and mom thinks it was because she'd gone without a consistent Motrin/Tylenol dose for fever (as her fever is gone, so she hasn't been treated for it, so no fever reducer which, little known to us, was also acting as a pain reliever).
Mom asked to see a nutritionist while they were there. On a hospital visit years ago, one was sent and mom loved her. She is the one who introduced mom to Duocal and let Claire try some drinks like kindercare and pediacare. It was nice to have samples for Claire to try, but she threw up the first one. They were 'sickening sweet'.... Claire's big sister had even tried a part of one and thought it was delicious (there's a child with a sweet tooth) but couldn't finish the 1/2 can because it was much to sweet even for her. So, bottom line the wonderful nutritionist was coming.
She is so sweet and mom mentioned Claire's fluid intake was not good. Claire does great eating solids, but not so much with the fluids and also mentioned how her daycare is hesitant about giving Claire fluids due to aspiration. The brilliant nutritionist said, 'there are some solids that we count as fluids'... mom was intregued and thought that was the answer for Claire... so she learned more... it seems obvious after the fact, but the first solid that is counted as a fluid is Jello. She said we can even make it however mom wants. She can make it thicker (more calories, less water, easier to eat), make it with duocal(more calories), use juice instead of water (more calories in juice than water), use cola instead of water, as a fluid (mega calories there). Mom even thought of all the things she could put in it for variety, mushed bananas, applesauce, yogurt... the usual things... but for now, just try the jello as is and go from there... surely her daycare would not have a problem with feeding her that... and they even sell jello now in a convenient individual serving size, to get mom started.
Mom said, 'what else do you have?'... the nutritionist said that another solid that they count as a fluid is ice cream... think of the calories there... and frozen yogurt may even have some added benefit... but maybe not the live culture you get with regular yogurt. She also mentioned, since Claire has a broken bone, that mom should add more calcium to her diet, but that she could do that by adding more yogurt to her meals. Mom was pretty excited after the meeting.
They are thinking Claire can leave today if she picks up her eating and gets off IV.  She doesn't want much to do with eating, or drinking, even her favorite stuff (Pedialyte and Bananas).  Dad will bring her some banana/rice cereal and soy milk...maybe she will like those... fingers crossed.
Mom is also trying to remember how grandma put her arm in a sling when she was little... seems like she used a bandana.  The x-small sling they have for Claire swallows her, and probably more of a formality, since it is just to big to seem to be working.... so mom will try to figure out the bandana sling.
Claire's nurse didn't seem to have much luck with the feeding last night, so that will be mom's focus today.
Ped cardiologist visited this morning. Said she hadn't had an echo in a while and since she's thriving more and more, he said they could do one while she's here in the hospital.
Mom had a hair appt today... it is an odd thing and she planned on cancelling - she made the appt a week ago. Her friends said she should keep the appt and needed to get out of the hospital. So she asked dad, and he said he could grab the kids after school and run them by to see Claire while mom goes to get her hair cut. The appt is 2 blocks from the hospital so mom went. She got 6" cut off and she felt better about the appt, tho she nearly fell asleep in the salon chaire.
Later in the day, the ped card comes in and tells mom that he saw something in the echo... it was an infection growing on one of her heart valves. The name of it is endocarditis, and it can cause big problems, but it can also be successfully treated. Mom thinks it is odd that Claire hadn't had an echo in a couple years, and when it was decided to do one, they found something as serious as that. Divine intervention seems like.
He started talking about the treatment... a PICC line (major IV line that can stay in for months at a time) so no IV will have to be changed every week, since she will be getting IV antib's every day for 4 weeks. Mom was blown away, at first she thought it was the craziest thing, each new day Claire is there, they find something new... kinda like what you would expect from a shady automechanic. If she hadn't come in for the pnuem, the collar bone would have likely just healed on its own, but this heart infection, well, thinking it could have been fatal. And Claire isn't out of the woods, certainly she needs prayers that they are using an antib that will clear it up and completely. The dr said they aren't messing around and that the antib is the best there is and that 4 weeks should certainly be plenty of time, and then some, to clean up the bacteria causing it.
Mom is scared. She's scared of the PICC line, she scared of any possible complications that could arise, she scared of what else is in Claire's future that may not be good, as she is finally getting some solids in at 8pm tonight, but that was after a 7pm fever of 101.1 (under her arm, so really 102.1). Totally unexpected, esp given the antib's that she's been on and given that they've just increased the dosage today, based on her new diagnosis. Did she happen to mention that it is possible that the heart infection could have possibly caused the lung infection? and that if could cause other infections... but given that she's on the antib (hopefully it will work for her) that if it thought about spreading, it could still be killed with the antib... mom has asked lots of questions... she's even asked the same questions to different people just to see if they all read the same med book... seems like most have, and some have read beyond the usual text. Whew... time for bed. She's going to feed Claire another 6oz or so and go to bed... long day... certainly she doesn't really need the sleep... sleep is for Pansies anyway.
As if that weren't enough... mom got a letter that she has jury duty next month... when will the madness end?
Claire ate again for mom and took in a little cola too. She threw up twice, but the first time was more like just coughing up some phlem (with a few dry heaves to follow). Claire seems to really be trying not to throw up the good food and working on differentiating. Mom has noticed that when she coughs up a little, she can get it out of her mouth, and lately doing that with a full tummy. On the other hand, she had to cough up a little more later in the evening, around 10:45pm. She still didn't throw up as much as she ate and much of it was phlem... perhaps a result of the cola. Mom brushed Claire's teeth and off to bed they go. Temp at 11pm, 98.6, under her arm.

May 7


At about 1:15am they were headed out of ER and into a room. It took a while to get settled. The peds floor was quiet and calm, a nice change, and the nurses were wearing bright colors and very cheerful. Once in the room, the nurses were most amusing, but mom needed sleep and couldnt' enjoy the fun. Mom asked again for the anti-seizure med that Claire should have gotten at 10pm... mom should have brought a dose with her and the ER was crazy, but Claire had a seizure, and obvious one at 1:30am so ... her lips were blue and mom was very nervous. She popped out of it and the nurses were working up an order for adivan (sp?) for the next one... fortunately the next one didn't come, but the med did and Claire took it and eventually fell asleep. They lowered her O2 to .5 liters from 2.0. She seemed to be doing okay with that.
Mom was up at 6:15am... The nurse was changing Claire's diaper. Gave her meds, etc. Mom noticed Claire off O2 and her sats were around 91-94%.
Dr. was in at 9:30am to check on Claire, noticed sats dipping to 89% and put O2 back on and humidified (at mom's request), resp guy came in and said 89% was fine, and took O2 back off.
Mom was pretty tired but opted to get up and make a few calls, mainly to dad to ask him to bring her laptop when he visited. Claire's lips were pretty chapped, nurses said it was from mouth breathing. Mom didn't have anything to put on it, so used her lip gloss, it is acutally 'bert's bees wax lip balm'... nice stuff, Claire's lips were shiny.
Meanwhile the dr came in again... She mentioned that they noticed a broken collar bone... Claire had a broken collar bone. Mom was dumbfounded and tried so hard to think of how in the world such a think could happen. And why wasn't Claire crying about it. Mom held her so much and she never fussed about it. Did it happen when she was laying on her tummy and trying to roll over and go into a body rattling coughing/gagging/throwing up fit, and forget her arm was in the wrong place? How could Claire not feel that and just scream with pain?
The day was a sit and wait... get Claire back to eating and get her breathing back up. O2 levels were anywhere between 82 and 100% today. Claire still has a very loose, loud cough and keeping her food down nicely.
In the evening, a friend came by with chili and a frosty. yum. It was nice to sit and chat. The dr mentioned going home tomorrow evening. Mom won't get her hopes up, but it sure would be nice. Claire's nurse, who is the daughter of Claire's school teacher, gave Claire a bath and was excellent with her. She said she'd work on feeding her through the night, so mom felt like she could actually rest, knowing someone was working on the feeding issues. Mom worked on feeding a bit before bedtime and picked Claire up and Claire started crying. Poor thing. It is rare to see tears from her eyes. Mom called the nurse to check the sling. Mom was asleep by 11pm and up at 7am. There were a few wakings in between, but everything seemed status quo, so she didn't feel the need to get out of bed.

May 6


Mom was up at 3am to check on the Peanut. Her temp was at 99.6, and that was comforting...
Claire had a busy and rough day. Mom got her up and fed, she kept some food down. Today is her big sister's day, and mom spent much of it with Claire trying to keep her fluids down, and she did pretty well in the morning keeping down 4oz. Later, friends came over and Claire was very lethargic. Mom kept her in her room and hung out with her much of the time... she had a fever and mom wasn't able to shake it, once again. at 102 around 1pm, then after 2 hours 101.5, more motin, against mom's better judgement... it just didn't seem to be coming down, yet she was getting lethargic, not interested in food, etc.
Mom was getting worried and running out of tools. She couldn't bear the thought of going one more night without help... esp if Claire showed any signs of seizures, and she hadn't so far (as far as mom could tell at least). Once everyone left, mom had made up her mind. Her temp at 6:30am was still 101.5. Dad called the ped and the on-call phys assistant said to just go to ER. Mom did after giving Claire her antib and giving Claire 1/2 oz only to see a full oz come back up.... Mom and Claire got through triage (temp 102 rectally - weight little over 18lbs) relatively quickly - they said she'd get a room - she's first in line since she needs IV fluids and O2 (showing high 80's - low 90's at room air), but waited a while to get a room - feeding Claire 4+oz of pedialyte in the meantime... finally, a dr came and got them and they went to another triage room and he determined she was a very sick little girl. It may be that she actually was having a seizure when he saw her and she was not responding... her breathing was very shallow, maybe pneum, tough call, but he made one phone call and mom followed him to an ER exam room that was still being cleaned up... the plastic on the bed was still wet when they were putting on the sheet.
Claire got an IV antib and fluids, O2 (2 liters), blood work, xrays... the xray guy didn't put her IV fluid back on the pole and mom found it a few minutes after they arrived back, but couldn't reach the pole to put it back up, and the blood was flowing into the line, she got a nurse, who got the IV guy, who fixed it by flushing the line. The ER was crazy. They got in the exam room at 8:45pm, they were told almost immediately after arriving that she would be admitted. They got admitted and a room at 2am. Mom was trying to sleep on a stool with her head on the bed next to Claire.
Mom was told around 10pm that Claire had pnuem. In both lungs... but not too badly. At 11pm, her temp was down to 99.7.

May 5


Claire was up at 3am, mom heard her gagging and knew dad was in bed, so she got up to put the cup under Claire's chin. Claire had dry heaves, so mom got her some pedialyte (nothing mixed in) and gave her 2oz... only 1/2oz. of which came back up. Mom took her temp and she was 100.8(under her arm). Mom decided it was time for the cannula, since the blowby O2 was not enough, as far as mom was concerned. And Claire needed some good O2. She was back in bed and slept for a few hours, coughing randomly, but oddly mom felt she wasn't going to be throwing up for a little while.
In the morning, Claire was looking frail. Mom was concerned, but has faith in her meds and will continue with the pedialyte throughout the morning. Claire's big sister has First Communion practice today and dad has a housing fair that he has committed to... he took sis to ther practice and mom will be going to pick her up later... hopefully Claire will be in a good place and mom can let big brother watch her for that short period of time. As dad was leaving, Claire's fever spiked to 101.5 (under her arm) and mom was working on Claire keeping down the tylenol and some pedialyte, changing her clothes as she'd thrown up just a small amount, and prepping to change her bedding. Mom left for a moment and Claire started coughing... mom knew the pedialyte was history, but couldn't get in fast enough... and partly glad she hadn't yet changed the sheets. Little Claire, exhausted, was going back to sleep. Still she kept down a good amount of pedialyte. Mom is going to give her a few minutes to decide if she is going to keep down the rest and go in to change the sheets.
Claire got her bath and clean sheets and fell asleep shortly after 9:30am-- mom put her canulla on so she can get some good O2 and help with her breathing.
Mom picked up big sis while Claire slept and her big brother watched her.... she was gone about 15 minutes and got the report that Claire didn't make a peep... just slept.
Around 12:30pm, Claire's temp spiked again... 101.1 (under arm). Mom gave her some Motrin and some Pedialyte... she drank and threw up a little, not too much, again with of phlem.... mom is trying to think of a good way to loosen that ... thinking of trying the cola again this afternoon. Hopefully the temp will go down again and she will be on real food again soon.
By 2:30pm, the fever spiked again... 102... mom is going to probably have to give her a bath. Mom was once again frazzled as Claire's 12:30 Motrin was suppose to be an 8 hour for her fever to come back in 2 hours was a bit upsetting.
Mom opted to sponge bath her, she wasn't likin' it at all. Her temp came down to 101 and she held down about 4 of the 8oz of Pedialyte. Mom had to run off with big sister to get a few last things for the FHC tomorrow and the small gathering afterwards. Dad stayed with Claire, she slept the whole time. Around 6:45pm, her temp was down to 100, without Motrin (since 12:30pm) and mom thought it was kinda strange how her temp just goes up and down on its own. Mom is just glad she didn't have to give Claire more fever reducer. Claire drank another 2oz (pedialyte with Duocal) and threw up about 4 drops, she seems to really want to hold it down. Mom tried to give her another bit of Pedilayte but she was resisting and mom put her down and Claire raised her hand up to mom... so mom held her hand a few moments while Claire went to sleep, on her back - around 7:15 or so. She is so exhausted she doesn't understand much of what is going on with her little body, just is a very trusting little girl who trusts her mother to get her better as quickly as possible.
Around 8:15 mom gave Claire some Simply Stuffy. They don't make it anymore (trying to get away from pseudafed-type meds for children and discontinued it) so mom treats it like gold. Claire's been breathing with her mouth open, so mom thinks she is really congested and the canulla isn't doing much good if Claire is breathing through her mouth. Mom also gave her her daily dose of antib (Zithromax, mom's favorite). Fingers crossed she is well soon. Claire was working on another oz of pedialyte/duocal when mom opted to go for the meds, so she lightened up on the p'lyte until the meds are absorbed a bit by Claire's body. Then back to the drinking.
Claire's fever spiked up again (by spiking I mean that it pretty much stays around 99-100, so spiking is above 100)to about about 101 around 9:45pm. Mom gave her a little drink, then some Motrin and her usual med. She waited until 10:15 to do some chest percussions, Claire coughed only a little... then fell asleep. Around 10:30, mom gave her 2 more oz and she fell right to sleep, so mom put her to bed. The Simply stuffy must have done some good, because Claire seems to be breathing out of her nose. While she was sleeping, mom closed her mouth and it didn't phase her or her sleeping. They also decided to close up the house and turn on the air conditioner. That way, the house would be the same temp all day and all night, and no outside environmental influences like dust or pollen coming inside. Mom was comforted to finde that PediaCare makes infant drops that are just pseudefed and that Motrin also has it in their cold medicine for kids. Mom got both. She also got some Tylenol, since the stuff they have is also for infants, and she's going through it rather quickly... and it is good to have the children's Tylenol on hand anyway.
At 10:38, Claire is sleeping soundly and mom is going to hit they hay as well. She's getting a bit nervous as Claire's sister's FHC is tomorrow and they haven't decided what to do... If Claire makes a miraculous turnaround, she can go and that is the way it was planned before she was sick. But now, mom isn't sure if she will have to miss the FHC or what. Most friends and family are going to the mass, the few folks who are left who might feel comfortable watching her are out of touch. Mom has faith that everything will fall into place. ... or she will wait for the movie.

May 4
19 lbs


Claire was up much of the night... she threw up around midnight and when dad went to bed around 2am, mom got up and tried to get her to eat more. Mom put some vaporub on her chest and fed her some Pedialyte and she did fairly well, throwing up the first oz and keeping down a bit more. Mom gave her some Tylenol, decongestiang/cough suppressant and a little mylacon. Claire went to sleep just after 3am and slept until 6am or so.
Mom got her out of bed and with all of Claire's coughing, she opted to give Claire a bit of cola to cut up the gunk (I think that is the technical term). Clarie drank some, threw up a bunch of gunk, and drank a little more. Mom and dad both noticed that she was coughing way less after that. Mom got a dr appt for her at 10:15am and at 10am when they were running out the door, mom noticed Claire was hot. Her temp was 101.2(rectally) so mom got her some Tylenol. Needless to say, they were a bit late for the appt. but got right in and out. The dr said her lungs sounded 'gunky' (yes, the phrase he used, told you it was the technical term)... he said that she didn't seem as bad off as she was the last visit where they sent her to ER, so she was sent home with orders for lots of liquids and antibiotic. She also got an antib shot to start her off. Mom dropped of the prescription(drive through) and picked up some lunch (also drive through)... afterall, Claire had fallen asleep comfortably, so there was no need to hurry home. When Claire is sleeping, she typically isn't coughing, so mom likes her to sleep.
When they got home Claire went to bed until late in the afternoon, mom got her up and started with the pedialyte, only to have Claire throw up again (she's good at getting it all in a cup) and much of it was phlem, so it was a very productive 'up'... and she drank more pedialyte and mom put her in her bumbo, where she fell asleep... so back to bed.
Mom has pretty much determined that when Claire isn't well, neither is mom... she goes into 'frazzle' mode and not much fun. Kinda like when you see a hurricane coming, and you 'hunker down'... that's mom. The dr appt could mean a trip to ER, followed by admitting Claire, and once in, she's in for a minimum 3 days, sometimes 5... so mom sees the worst coming and prepares for it... then if Claire has only a dr visit and home with a prescription, life looks better.
She continued into the evening throwing up, but only in small amounts... mom fed her in 1-2oz increments and she would throw up 1/2 oz... and it was full of phlem, so mom felt it was fairly productive.
In the evening, dad took over so mom could get some rest... mom gave Claire her decongest/cough med and some Motrin, dad was under orders to give her her regular med and her antib, then brush her teeth (mom has been a bit crazy about the teeth since there has been so much throwing up, that acid will be eating away at the teeth - no pun intended). His orders also included waiting about 15-30 min between meds, since she could throw them up when a new one was given, and mom wanted the meds to have a chance to be absorbed.

May 3


Claire was home with dad today. Mom went to work. She had the smallest problem with gagging and her temp didn't get over 100, she had even gone about 24 hours without throwing up, so mom thought it would be good to keep her home. She gagged and had a few spells of throwing up and seemed to relapse today. Mom will be certain to get her to the dr tomorrow... for a second opionion. ;o) With the weekend coming up, antibiotics would be a good thing for Claire... no sense in going further without using all the tools to get her back on track and put some weight back on her... and then some.

May 2


Claire was up part of the night with a loose cough, mom was listening for some gagging, but fortunately Claire kept her dinner down all night. In the morning, she started gagging and felt warm. Mom didn't take her temp, but gave her some Tylenol just to get her feeling a little better. Meanwhile she also gave her some pedialyte with duocal. Claire took in about an ounce and coughed it right back up. Mom decided an oz was too much, so she opted to squirt in a smaller amount until Claire was cool. Once cool, she was also perky, mom gave her some rice cereal. Claire ate most of it (about 6-8 oz) and fell asleep during the last 4 bites. Mom blew gently on her face and she woke up a couple times, but the Peanut was just too tired for that one last bite. Mom put her to bed around 10:30am. The Tylenol probably made her a little sleepy too... and her meds... and the throwing up earlier. Mom was happy that she got a few grins out of Claire before her late breakfast too.

May 1, 2007


Mom heard Claire fussing at 3:15am, and got up to check on her. She noticed she was very warm and there was a nasty smell. Claire had thrown up and she had a fever. Mom cleaned her up and changed her and her bedding, then took her temp and it was only 100 (99 under her arm) but she felt so much hotter than that. Mom gave her some Tylenol, she wanted something that wasn't 8 hours so she could see if she had a temp again in the morning (Tylenol lasts 3 hours, Motrin lasts 8 hours). Mom checked email, did a little laundry, etc while waiting for the Tylenol to kick in, and when her temp reached 98 under her arm, tho Claire was still awake, mom thought it would be good to get some sleep.
In the morning, dad said he could work from home, no errands planned for the day, so mom went off to work and he stayed with Claire, starting her off with Pedialyte with duocal and Miralax (mom hasn't ruled out Claire's constipation as often being a secondary cause of her little complications).
In the morning, she seemed her usual perky little self, but if she has another rough night, mom will threaten to take her to the dr tomorrow.
Claire threw up more in the evening, likely due to the phlem and/or low grade fever (99 under her arm). Her fever eventually worked its way up to 100 under her arm (that's 101 orally) so mom gave her tylenol. Later in the evening, she ate some rice cereal and went to bed.

April 31


A fairly typical day... off to school, home, dinner, off to bed. We like those uneventful days.

April 30


Claire had a fun morning. She was up talking to mom before mom had a moment to go in to get her from her bed. She was full of smiles when mom went in and full of herself. After diapy change, meds and cute hair, they were out the door and off to school and work.

April 29


Claire had a nice morning, after a full tummy, she slept through church. Mom and dad took turns holding her as she is getting a bit heavy and they were standing much of mass. After mass, Claire's cousin come over for lunch and spent much of the day with them, baking cookies and watching tv. Not something she does regularly from the sound of it. She's very active and has a lot of energy which she often channels into school work and fundraising with Relay for Life. She's a fabulous person and mom, Claire and Claire's sister really enjoyed having her to themselves during the day! Hoping next week she will join them for Sunday Dinner!
In the evening, mom took a short nap with Claire and helped dad with dinner afterwards. Then getting the kids off to bed and watching a bit of tv. Claire's sister was 'scared', but mom was thinking that was her way of saying she wasn't tired and wanted some company. Mom put Claire in the Bumbo chair and went to attend to her big sister, only to come back and find dad cleaning up her throw up. Mom took over cleaning as dad prepped the bath. Guessing Claire had some phelm she couldn't get rid of any other way. Dad stripped her down and got her bath ready (Mom had just finished bathing her, dressing her and getting her all ready for bed) a second time. Mom and dad swapped as he cleaned up the mess and mom bathed Claire. Finally, she was clean and mom gave her a few oz of Pedialyte before bed, unable to tell how hungry she was. Ahhh... then finally, 11pm, mom off to bed while dad started a load or two of laundry.

April 28


Today was a pretty fun day for mom. Dad watched the kids so mom could go shopping (some new clothes and shoes - something mom hasn't done much of). He got Claire up, fed, etc, while mom was off... it was fun for mom, she started with a little coffee from a popular coffee shop and off to the races, not knowing how much time she'd have.
She had a most productive day and arrived home as a friend was coming in the driveway to drop off clothes for Claire's big sister. They sat and had a nice afternoon together and when she left mom packed up the kids and followed dad and his band down to the coast for a concert at sunset. It was a gorgeous evening and mom danced with Claire and her big sister... they stayed for a couple hours, but it got late and it would be a long drive back home, so they left and the kids fell asleep on the way home. All that fresh air.

April 27


Claire had a nice morning. She was up early and dad put a blanket on her and she fell back asleep, after kicking the blanket off. Mom woke her for school and off they went.
At school, mom had a meeting with Claire's teacher and her PT. Mom had filled out an evaluation of the PT, but meant for it to reflect the County's crummy way of trying to pretend all the children get all the services they need. But, unfortunately the therapist took it personally and mom felt bad. The therapist is a very cool lady, she just has few resources, including time, and an overwhelming amount of children to see. Top that off with the fact that all her children in high-need, vs other schools who may have children who aren't as needy.
The bottom line for mom is that there are children who should be walking, even just sitting, but are laying around instead and not getting the services they need. And she doesn't know where to begin to seek advice on how to change the system. Then frustration sets in. So, she's starting right here.
Certainly Claire should be getting PT at least 2 times a week, she gets it once a week - when the PT has the time.
In the summer, the plan was that she would get none, and her parents would instead, receive instructions on what to do ... ALL summer. With no input at any point during the summer as to her progress or even a change in the instructions. Perhaps this is when mom started getting a bit angry. The therapist saw that there would only be one therapist(not her) all summer for everyone, and saw that there would be not time for that therapist to see all the children, so she realized that instructions would be the best way to go, since she foresaw there would be very little therapy to go around.
The same goes with Claire's therapy during the school year. The therapist sees the intense need and realizes there isn't enough of her to go around, so she advises that Claire should/will only get therapy once a week. (As a result, the higher-ups may see there isn't a need for another therapist to help out, as the therapist doesn't appear to be overloaded - even with a full schedule... and the cycle continues.)
From what mom saw, some kids aren't even getting therapy because there is no room on her schedule.
Not necessarily the therapists fault. She explained to mom today that she is already working a 9 hour day... and not able to come back to see children when they are sleeping or eating, as she has to keep on task... again this is just one person's opinion, but she's willing to hear others'.
So what is mom going to do about all this? Well, the PTO for starters, to see if there are other parents who feel this way, or it is all in mom's imagination. The meeting this morning was one more eye-opener about how things look fine from the distance, but if it is your child, things look a whole lot different.

April 24


Claire is doing well. She was up early this morning and hungry, so mom made sure she had a snack before school. Her breakfast snack at school is delayed on Tuesdays as they change up the schedule, so Claire gets a snack at home earlier than usual.
Mom went to work and popped in to see Claire's big sister in a talent show at her school. It was fun to watch, and mom got it on video, so she will be watching it over and over again.

April 22


Claire had a good weekend, relaxing and eating as much as mom could feed her.

April 19


Claire went to school today and has a terrific appetite!

April 18


Claire had therapy today and did fairly well. She likes sitting up and holding onto bars in front of her and she likes laying on her tummy on the ball and putting weight on her arms and holding her head up. Mom needs to work with that more at home and work on her weight bearing on her legs too. Maybe more stander time.

April 17


Claire is staying home today. Mom decided it would be best and get her little system back up to par before sending her to daycare. Dad has the morning with her and mom is going to work, then mom will have the afternoon with her and Dad can run his errands, etc. As mom left, dad had a nice breakfast planned for Claire of mashed potatoes, applesauce and yogurt. She was watching the bowl and spoon as she sat down ready to eat. She has a lot of catching up to do.

April 16


Claire has had a rough weekend and mom decided she should go to the dr to get a second opinion today. The dr saw her (Claire threw up in the parking lot - foruntately into a cup and mom kept it for the dr to see - yesh - Mom and dad thought it was kind a funny that they had a fresh sample for the dr) and he decided she needed her 'fluids topped off' due to possible dehydration from all the throwing up and loss of weight, all of which could lead to seizures and then some worse problems. Mom kept squirting the pedialyte with duocal into Claire's mouth, careful not to give her more than just what she'd have with saliva, and hoping she would keep it down. Mom and dad were sent to ER and waited about an hour before they got to the exam room where they took blood and attempted a urine sample, then off to xrays and the IV fluids. Eventually she also got an antibiotic and a suppository for nausea. Whew. Mom found a quiet moment to call work and let them know she was essentially unreachable, no cell phones and sitting within a maze of ER exam rooms. Dad had to run some errands for work and brought back subs for them to have dinner. Meanwhile he contacted Claires uncle, filled him in and asked him to pick up Claire's sibs from school as he didn't want to bring them to ER. Claire finished 4oz of pedialyte with calorie powder by the time they'd gotten to ER.
Eventually, Claire ate some bananas and kept it down, mom had dinner with dad, all the lab work came back with nothing too serious to report and by 7:30 or so Claire was released to go home. She hadn't had her anti-seizure meds, and her parents still had to go get her sibs from her uncle's home. They had just sat down for dinner. Eventually, they got home, mom and dad were exhausted. Claire ate well and kept it down - rice cereal with some calorie powder added. And off to bed everyone went.

April 15


Early this morning there were are severe thunderstorms moving through the area, mom was up much of the night as they moved through in case any tornado warnings were issued, the tornado watch lasted until about 4am, mom dosed off a few times, but still wanted to keep watch. That stuff is so scarey.
Mom also checked on Claire though the night. Claire had a crummy day. Still throwing up about 80% of what mom feeds her. Mom has switched to just Pedialyte today in hopes of flushing out her system and making sure it isn't the calorie powder that is working against her little body. Mom and Claire spent the day together, mom feeding Claire pedialyte, Claire throwing up into her cup, mom rinsing out the cup and getting more pedialyte with naps in between, for both of them. Mom stayed pretty well rested as Claire took many long naps and mom woke her to get the fluids back in her.

April 14


Claire was up in the morning eating breakfast and decided to gag and throw up to start off her day. Mom cleaned her up while Dad and Claire's brother headed off to see the Spring Game. Mom was thankful later that she hadn't made plans to go. Claire came down with a small fever and took naps during the day. Mom worked on getting some fluids in her before attempting the solid foods, thinking also that the fever made her thow up. Pedialyte much of the day with calorie powder mixed in to keep her energy level up. Mom found that Claire was having a hard time keeping her food down, but didn't show signs of a fever, so she's thinking that it was just a phase and Claire is on the mend.

April 10


Claire went to school today, still congested and not eating great. Dad picked her up some Little Noses Decongestant nose spray and mom started using that to help her breathe a bit better and hopefully help her eat better too.

April 9


Kids were still out of school today, so the family made a leisurely day of it, spending time with grandma and grandpa and eventually rolling back into town late in the evening. Claire still has her congestion and now it is a bit more like a cold.

April 5


Kids had half day at school today and afterwards the family packed up and headed to grandma's for Easter. It was a stressful weekend with so much going on and mom didn't get much rest. Claire was congested, couldn't sleep and was very vocal about it much of the night. Mom rubbed her down with Baby Vicks to help her congestion.

April 2, 2007


Claire had a good day, ate well and went swimming at her school. Her afterschool teacher said she loved it. Of course the pool is heated and so is the air, so there's no chance of the kids getting a chill... sounds really nice to mom. Not much else new going on. Claire is in good shape for Easter and mom prays she stays that way. The pollen count is extremely high and no rain in sight, tho they said it would rain (30% - which has been big for the area lately, perhaps why the pollen count is so high)... but no rain in sight, just goes right around the city. Mom had a theory that Claire had reactions to the pollen, since she tends to get sick this time of year, but with the high count, seems like maybe that theory has been disproved. Yeah!

March 27


Claire wanted to sleep in, but mom had to take her car in to get fixed today and needed the Peanut up and at 'em. She had some bananas to hold her over until breakfast at her school.

March 26


Mom picked up Claire a bit early today and wanted to bond. Claire was all for that, except she fell asleep in the car on the way home. Dad met mom and put Claire in her bed then mentioned he had several errands to run. Mom layed down for a short moment too, then got up to do some work and then start dinner. She made a late plate for dad and got the kids to bed. Mom and Claire cuddled for a while until dad got home and off to bed Claire went.

March 21


Claire thought she'd sleep in, but mom wanted to switch up her schedule a bit. She had PT at 12:30pm, so mom decided if she was going to get stretches and mom didn't want her fighting too much with the therapist, then sleepy Claire would be the better Claire to show up for the session. Mom fed her well and put her back for an early nap, tho Claire was full of herself and wanted to play. Mom took her out of bed and rocked her... Claire yawned, mom yawned, Claire went back to bed... mom went back to work... Claire didn't sleep, mom didn't get work done. Eventually, Claire went to sleep, 11:30am. Still sleepy for PT, so that was good and many good stretches were had.
At home, mom was eating chocolate brownie cake with chocolate icing. Claire looked like she might like to have some, so mom gave her a little bit on mom's finger and was careful not get bitten. Claire loved it so she got a little bit more. Mom noticed she was doing well with moving it around in her mouth and keeping it in her mouth... then swallowing and not gagging. So mom decided Claire Baire needed some more texture in her food. Mom made some mac and cheese. She overcooked so it would be extra soft and cut each 'roni in half. She didn't fix too much for Claire, but Claire ate it all... for every 10 'roni she ate, 3 were pushed out by her tongue. Mom was beaming. She looked around the room to see if anything looked dream-like since any time Claire did anything great, like running around the room or having a full conversation with mom, mom would wake up shortly after - from her dream. It was a banner day as far as mom was concerned... one more food group that Claire could handle (and we all know that Kraft Mac and Cheese is certainly considered it's own food group).

March 20


Claire was up early and took a bath. Mom gave her some milk and out the door they went. Claire is going to daycare during spring break and mom is off to work.

March 18


Today our friends leave and the time with them was so short, but better to have a short time than none at all! Life is good. The family went to church in the evening and took a front row seat, per Claire's sister's request, only for Dad to take her out and put her in timeout... no more front row seating for Claire's family! <sigh>

March 17


It's St. Patty's day and the house is all decorated and mom has a friend coming to stay the night!! Whoo Hooo! It's Baby Ryan's mom and Ryan's sister Drew.
Big fun was had by all, starting with rum margaritas and chips and salsa... then enchiladas for dinner... and up late(for mom) chatting about life and everything under the sun!

March 11, 2007


Claire had a fun, easy going birthday.
She slept in and daddy got her up for breakfast just before mom and the rest of the family returned from church. She went back for a morning nap soon afterwards and then up for some fun with everyone. Mom wanted to hold her the entire day, and gave her kisses and cuddles every chance she got.