Thank you everyone for your wonderful thoughts and prayers! |
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Claire's Journal
- Trying to keep up with the Baire! |
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Thursday,October 13, 2022 Claire had a good night last night. It seems she is back to her old self. Wednesday,October 12, 2022 Claire went without oxygen cannula last night, all night. Got up a few times hungry, so mom and dad gave her Pediasure (chocolate flavor) The family woke up early only to get Claire ready for her 8am dr appt. It is a followup to her hospital stay. Her Dr was very pleased with how she turned it around after being so worried... and we all were, rightly so. She said she looked like she was back to her baseline, being off oxygen, eating well and her lungs sounded good and she was ready to go back to school. So Claire got a note that cleared her to go back to school and she started back this morning. Go Baire! She had a great day at school, but didn't eat. She was exhausted when she got home, school keeps her busy for sure. Dad gave her bunch of food in the evening and off to bed for some much needed rest. Tuesday, October 11, 2022 Claire's home health nurse stopped in and listened to her lungs, said they were pretty clear, hardly a sign of any pneumnoia. Claire went without her cannula today and was in the upper 90's all day, so it was decided she could go without it at night too. She did a great job. Her eating wasn't as very good today, but Claire does what Claire does, when she is hungry she eats. Monday, October 10, 2022 Claire was on .5 liters during the night, was up at 4am hungry so Mom gave her the last oz of her apple juice and some coconut water, she drank mayb 2 oz of that. She was up and alert this morning and had a good breakfast. No oxygen and up at 98-100% this morning! Sunday, October 9, 2022 Claire had 2 good meals. She stayed off oxygen during the day and stayed in upper 90's all day. Saturday, October 8, 2022 Claire had a great big meal in the morning, but later in the day was not interested in food. She had another good meal in the evening before bed. Kept her on oxygen the whole day. She was in bed by 9pm, but up by 10pm and hungy. Dad gave her several oz of applejuice as she had a good dinner just before bed and fluids are always good. Friday, October 7, 2022 Finally the weekend is almost here... mom can catch up on some much needed house cleaning and garden weeding. Claire was up at 7am hungry, so mom grabbed her coconut water and she had some of that to hold her over until breakfast was ready. Dad fed her about 4oz of food later in the morning and Claire fell back asleep. Thursday, October 6, 2022 Mom was up pretty early to check in on work and Claire. Her cannula was off, so mom put it on and she was around 95%. Thinking she didn't go below 90%. Home health nurse came by to check on Claire, temp, O2 level and see what the family needed. The goal is eating more and getting her off the oxygen altogether. Claire has some noises in her lungs still, so mom is in no rush to get her off. She is still at 1 liter and she's doing well with that. Mom checked her in her wheelchair and she was at 100%, so going to work more on eating. Claire napped a bit and was awake in the evening. She ate about 10oz of food and drank about 4oz during the day. At night she was up at 1am and again at 2am with her finger in her mouth(telling us she's hungry) and she gulped down probably a total of 8oz of coconut water with calorie powder added. Wednesday, October 5, 2022 Claire went the full night with just the cannula! Big sis let mom and dad know that they were going to move her out of the CU and into a regular room. Mom came in to relieve big sis. The dr came in and said we could move to the room... OR we could go home with oxygen! Dr took off O2 completely and she went down to mid 80's before he put it back on. Nurse came in soon after and did the same as she needed a number to give O2 company to put the setting at, Claire did about the same thing. Mom was packing up for the trip home and looked over moments later to see Claire had her cannula off, she really didn't like it anyway. Mom looked at the level and she was at 99%. Mom called in the nurse who said, "Claire, you have been holding out on us today"... she said she could leave off the cannula and mom would just watch the levels. 10+ min later it hasn't gone below 96%. Mom finished packing up Claire's stuff and big sister came by and packed it in her car, took it to the house. Didn't get home until close to 5pm in the evening. Mom was exhausted, it hit her like a ton of bricks. She tried to unpack a few things, showered and was in bed before 8pm. Dad was up with Claire and got her to eat some. Tomorrow is focused on Claire eating and drinking more. Tuesday, October 4, 2022 Today is Claire's grandma's birthday. The first since she has passed away and she is surely missed. We know she is watching over Claire, next to Claire's grandpa. It is a sad day, but full of wonderful memories we will cherish. Claire's bipap was incredibly loud, mom tried to adjust it, and RT came in around 3am, so he put Claire on a cannula so we could have some peace. She was on the bipap enough to get her strength back and have good respiratory and good heart rate since, her oxygen has been steady at 100%, only dipping to 97% on rare occasions. Claire's breakfast arrived 9am and she had applesauce with grits. Took one bite of eggs and decided that she would not open her mouth to that bright yellow stuff, mom put the applesauce/grits back on the spoon and she continued with her breakfast. She had 2oz of applejuice with her breakfast as well. Mom put calorie powder in the applesauce too. Working on increasing calories today along with sleeping. at 11:30pm, the room is still dim so she can rest up, she seems to be sleeping, sometimes she just has her eyes closed and deceives you into thinking she is sleeping, only to pop them open when you get closer. Even with the bipap off, and cannula on, she didn't seem to sleep, her eyes were open each time mom looked at her.Dr came in this morning and mom said she didn't think she had slept much in the past 24 hours... Dr thought it was because of all the action here, but mom mentioned Claire can fall asleep at her school and takes small naps during the day while still sleeping through the night... basically, she is a sleeper, like her mom. Mom asked about moving her back to her old seizure medicine which was oral (with NPO they changed the med at the hospital to give through IV). The dr approved the request, and we can rule that out when trying to figure out what keeps her up so much. Mom didn't ask the dr about Claire's arm, she was thinking of getting rest for Claire with med change... definitely need to get the nurse's ear about that today as they are the only ones, it seems, that has the dr's ear. It's 12:30pm and Claire is still sleeping and her numbers look great. Finally some rest for the Baire. Nurse came in and mom asked about the med to dissolve the clots, nurse will speak with dr about that. RT is here, it's 1:30 and she is still sleeping... but needs her RT, so likely wake her for the breathing treatment and the vest therapy. Claire's dr came in and explained that it is a superficial vein, so the clot won't travel. She will put her on a prophylactic med for clotting as she is not mobile and could get another clot, like in her leg. Tonight Claire's big sister offered to stay the night at the hospital with Claire. She did great sending info about Claire's pulse, O2 levels, nurse discussions so mom and dad had a night at home. Her big sister was going to come relieve mom for an 8:15am appt and thought it would be easier to just already be at the hospital and give mom a break. It was actually dad's night to stay at the hospital, so he was very appreciative. Monday, October 3, 2022 This morning started with Mom's alarm going off and she was checking in with work and heading back to the hospital to work and help dad with Claire. Taking off bipap and going straight to cannula today, not even going to oxygen mask and she did really well. 100%. RT said her breathing per minute was good, not the best, but good. She is having some eye 'darting' so going to do an EEG on her this morning, check that the new seizure medicine they put her on (needed to be IV and her usual is oral), isn't causing some seizures or something we don't see. Going to get her some applesauce today, food arrived from dietary folks (nothing she could eat, not pureed), so she is no longer NPO (Latin for 'nothing by mouth') Mom asked for a pediatric cannula, so poor nurse has a list this morning on top of scheduling EEG and getting applesauce (which is typically not kept on the IMCU). He will also confirm that it is okay to add Duocal and add a tiny bit of vitamin C (mom may have asked for too much there) to her applesauce. She also getting fluid with D5 (I think that is what they call it, basically sugar) as her sodium level is high, they want to dilute it. Her arm with her picc line is a little more swollen than the other, mom asked the nurse and he's going to get the IV team to look at it. -- Great nurse, lots of patience with mom this morning. Mom and Dad are beyond words for how much Claire has improved when only days away the mucus ball was collapsing one lung and the other showed pneumonia in it, couldn't get her oxygen levels up and drs were not optimistic. Somehow the ball was dislodged and even maybe suctioned out... and she seems to be improving daily. Patience and persistence, I hear you Grandma!! #missyou. EEG going on now, over 20 little attachments on her head, in her hair, she is not going to like that but at least they aren't sticky, just a little gel to attach. Scheduled ultrasound to look at picc line arm after the EEG. So Claire had her EEG, then her ultrasound on her arm. Nurse came in to look at the picc line and told mom that they found a clot on the inside of Claire's elbow. Said it is likely from the picc line as that can happen. It isn't life-threatening, and they can give her something to dissolve it, but it could take a week to dissolve. On a good note, Claire ate after her visits. She had one travel-size cup of applesauce with calorie powder and vitamin C added. She ate it all and it took 30 minutes (1:30-2) mostly because of the visits. She was hungry and didn't cough one time. Mom is wondering if the pneumonia is from aspiration, which the drs think, or if it is from the cold she was getting. Maybe they see something in the xrays that help them see what it is from, not sure. Nurse was uncomfortable with her resp in the 30's so he put her on a vent mask, not bipap but the intermediate one. Said it should give her a break, she's in upper 20's now, he said 20's is good. Dietician came in to talk to mom as Claire is getting regular food (only second meal) but she eats pureed food. Dietician said that they don't send pureed food to this CU, so we had to brainstorm what to request, so mashed potatoes, applesauce, yogurt, Pediasure pudding... that sort of stuff. Should have mentioned cheese grits. Oh Rats! (no pun intended) She said calorie powder and pinch of vitamin C are okay. She will add a liquid multivitamin for her too. Around 9pm, Claire was getting a bit tired with her breathing, respiratory rate going up and heart rate as well, nothing too bad, but more than the staff likes, so she went back on bipap for the night. Needless to say Claire and her mom aren't big fans of that... it is very loud, can't get a pediatric mask for her, even after a week of trying, so the seal isn't very good, making it very loud. Her mouth is open the entire time taking in the air and that doesn't seem good either. Then there is the lack of sleep, mom thinks she doesn't sleep well with it on, if at all. Really need to get her energy levels up so tomorrow the focus is on sleep and eating... lots of each to get those levels up and give her more stamina. Also in the evening the IV nurse came by to check her picc line. Said it looked good and about to leave when mom asked her what she thought of Claire's swollen forearm. She went back and looked.. compared her hands, one is noticable swollen, and she asked if an ultrasound was done. Mom said yes and that dr decided not to give her meds to dissolve the clot (there may have been more than one) because they are typical and not causing a problem - the dr that is not here with eyes to see her arm and hand. Mom will follow up again tomrrow to see if that nurse, or any nurse will push for the meds to help her arm. Sunday, October 2, 2022 Xrays at 3:30am. Blood sugar following. temp 98.8, blood sugar is 89. Claire was taken off bipap and put on an oxygen mask. New dr today and Mom and Dad saw the nurse practitoner who is really neat. Talked a while, may try some food today (fear of aspiration) and weaning off oxygen. Not ruling out bipap tonight again if needed, breathing seems to wear Claire out and without eating, it won't improve, so we want to get her some energy, orally. Numbers are really good this morning on the oxygen mask. pulse is 104, O2 is 100% and breaths per minute at around 24. Claire's nurse and nurse practitoner(NP) were in the room to watch Claire's swallowing. She ate 4 small spoons of applesauce with calorie powder. She swallowed. Coughed once, but likely due to having some crud in her throat. NT suction showed no applesauce in her airways so no aspiration. Now we wait for nurse and NP to discuss if she will get more food soon. Mom was ready for bed and decided that she really was just too exhausted to only get a few hours of sleep again. Dad offered to stay the night and mom got home, showered, glass of milk, a little lavender and passed out until about 4:30am. Rolled over and went right back to sleep. Saturday, October 1, 2022 3:30am xrays and diaper change. Noticed what seemed to be drooling from her bipap mask. Later she was coughed a bit and mom went to check her. RT came in and mom mentioned the drool. When they took off her bipap mask she had lots of slimy clear gunk. RT vacuumed it away and did an NT suction and got a bunch out. At least her mouth doesn't seem dry. She reiterated with nurse and charge nurse that she needed NT suction more regularly and she had done it twice on her shift as an example. Still on bipap all night, Oxygen percentage of the machine giving her O2 is down to 40% from 50%, and when they took the mask off for suction Claire was leveling off in the mid 80's, so possible sign of improvement as mom looks for anything. On left side (bad side down) her breathing isn't as good, and her PICC line is on her left shoulder. Since Claire's potassium went down due to the lasik, we will need to hold off on more lasik until it comes up again. Our wonderful pulmonary dr is off after today then on a different floor on Monday. Very sad that she won't be watching over us, she has been a calming force overall. Claire hit 100% oxygen on the mask, not bipap. She does well on her right side. She is getting clothes and sheets changed, so that could change. Mom took a break. During mom's absence they turned Claire to the other side. She lost some O2 level numbers and got down to 85% so dad had them put her back on the original side and it started rising. He did some chest percussions on her back, didn't help much, but she had some good coughs so moving her back was a good idea. She popped back up to 100% O2 level. Mom came back, and Claire's level was around 97% so she did more percussions until she hit 100% and got caught up with the new staff on the new shift and hung with Claire's dad and big sis for a bit. They left and RT is here with the therapies. Said we could keep her off bipap as she is doing well and put her on it during the night if she needs it. Mom was very happy to have her off the bipap and just have the simpler oxygen mask. As mom laid down to sleep, the RT came in and said they were going to put Claire back on bipap for the night. Her respiratory numbers were high and her heart rate went up. They wanted to bring them down. O2% was around 98-100%. Friday, September 30, 2022 Claire had a good night. Slept well and her O2 went up to 100% and stayed there all night. Doctor came in and said xrays looked the same as yesterday, so we think not getting worse is a good thing. She came off the bipap today and was getting a little red marking at the top of her nose, between her eyes, they thought they'd give her a break from bipap and she did really well, staying in the 90's all day. when it came off briefly, she went down to 80, so she isn't ready yet to come off oxygen. Mom is still doing chest percussion therapy on her back, and she is coughing more today as the vibration loosens the gunk in her lungs. She also had vest therapy and breathing treatments during the day and making some little noises. She seems to be having some congestion in her throat, so hopefully we can convince respiratory therapy (RT) to do a nasal trach (NT) suction. It doesn't tickle, but really gets some stuff out that she can't cough up yet, and a tool we have. Once a day may be all she needs, just can't get them to do it, even with the doctor's order. After the doctor visit, mom decided that she could leave Claire in Dad's hands and go home and shower, it was a good call. RT came in and Dad asked bout the NT, but they didn't do it. Got a universal remote for the hospital room and ate some lunch while Claire had her sheets and clothes changed out. She is sitting at 100% on the oxygen mask as I type. The family enjoyed visitors last night and family visits this afternoon. Things seem to have settled down, but knocking on wood and thanking everyone for prayers for Claire to get well soon. Tonight Claire's position needed to be changed so she was moved from right side to left side, she seemed okay, but overall not as well as on her right side. She was moved back, and the new RT came in and noticed her breaths per minute (BPM) went pretty high, in the low 40's, and her oxygen was between 92-96%, so she's back on bipap. BTM went down to 20's which seems more acceptable, and she is beathing more easily, especially after the productive NT suction. Mom will sleep better seeing the 100% up on the screen all night (Lord willing). It is a setback, but we knew this would be a long process to recovery and getting home. Mom doesn't see "getting home" in sight, but she knows it will come, patience and persistence as her mom always taught her. Miss you mom. Thursday, September 29, 2022 This morning she is still at 100%. The darling nurses were in trying to get a blood sample and could not. The more experienced IV person came in and got the blood. They are talking about a picc line for Claire to keep her from constantly getting poked as her IV won't allow for drawing blood. Xrays done this morning, pulmonary dr came in and showed them to us. ***Appears that the mucus ball has been dislodged, maybe partially sucked out. Last night between 'the vest', cupping by mom and dad on her back on her left side where the lung was collapsed, bagging by the drs and the different breathing treatments with the 'anti-mucus' med added in, suction through NT and in mouth (some stuff came out), looks like we were able to get that lung opened up. That may explain why she was at 100% even with the bi-pap, when earlier yesterday on bi-pap she wasn't up that high at one point. The goal is to wean her off the bi-pap after lowering the levels on the machine and add a picc line to give the nurses a better way to get blood and IV fluids, meds. Claire's line is in with two 'outlets' and the nurses seem happy to be able to what they need to without poking her with a needle. She's been running low on potassium, so they were able to start that and take more levels. She's been hovering around 96% much of the day. Added an antibiotic to the mix. Just as I typed that she went up to 99%. Go grrl! Wednesday, September 28, 2022 During the night her O2 levels had gone down, so they increased her oxygen. Doctor came in and Claire was pretty active, and doctor said we could start giving her some food or thickened fluids. By-pap hides the sound of the crackle in her lungs, so X-rays today to see the state of her lungs. Switched her from oxygen mask to by-pap so they could try to get her more comfortable and get some of the fluid from her lungs. Considering lasix to also help with removing some extra fluids in her body. Xrays came back and showed a mucus ball in her left lung. The diagnosis from the X-ray also showed a collapsed lung, which could heal itself if ball can be coughed out. Dr came in and showed X-ray to mom, but mom cannot read X-rays, that said, Dr has a few ideas like "the vest" which is a sort of compression chest along with some suction, to try to move the ball. Seems somethings we can try to move it... the worst case is intubation and surgery... hoping Claire can move it out so we don't need to do that. Since she is not coughing and pretty much lying on one side, seems like this happened easily. This explains the struggle with the oxygen levels. Going to try Qtips in her ears as that also helps Claire's cough. It is about knowing your child, for sure. Respiratory staff was in here to explain some of this to mom and said they are adding and type of expectorant to her breathing treatments. Dr did ultrasound and it showed some fluid outside the lungs. When the vest gets here, we will see if she can cough some of this up. Claire had a rough evening, the vest didn't help, or the Qtips. She was using a bi-pap mask. Her O2 levels dipped down low and the critical care team came in to see what they could do. They tried a full face mask, then tried 'bagging' with forcing air into her lungs to lodge the mucus ball. It seemed to help, but only for a minute. Eventually they left and levels were in the 80's. Respiratory therapy came in and used Nasal/Trach tube to try to suction lower in her throat, also a suction of her throat, got some crud out. Mom continued chest compressions with her hands, which also seemed to help and go her level to 100%, momentarily. It was very difficult to watch as Claire's levels didn't come up consistently. Soon after they went down into the 60's, and respiratory came in and put the bi-pap on her. Forunately, that got it up into the 90's eventually at 100 where it stayed all night. Dad stayed with Mom and Claire at the hospital but didn't sleep very much. Tuesday, September 27, 2022 On by-pap, Claire had 100% today around 5am! Doctor came in and liked that Claire was doing well on by-pap and said we would work her May get changed down to a nasal cannula today. Antibiotics seem to be working. Later in the day they put on a cannula, but her numbers went down, so they switched to the oxygen mask she was using on her first day, her numbers came back up and was at 100% later in the evening. Monday, September 26, 2022 Around 5am, Claire's fever was back, but light and mom gave her some cough expectorant again. At 8:30am, mom gave Claire some Sudafed for her congestion and some Pedialyte with more vitamin C in it. By 9:30, mom was giving Claire cola to help with her crud in her throat and Claire had a rattle when she was breathing. Mom decided to get an appt with her dr., and see if it was in her lungs/chest or in her throat where the rattle was coming from. At the drs office, her dr didn't like the way she looked and sounded and sent Claire straight to ER, called ahead to let them know we were coming and give the attending dr a heads up on Claire and her condition(s). She seemed to have really gone downhill the past couple hours and the ER would be the best place for the professionals to help us out. The ER staff was great and the dr felt like Claire had pneumonia based on the sound of her lungs and didn't like her breathing. She immediately got a breathing treatment and oxygen mask on her face and the O2 reader was showing low levels. She's very lethargic and not coughing. X-rays were ordered, fluids administered, blood tests. Drs concerned has mom and dad concerned and preparing for the worst as her breathing is super low and they are talking about bypass then intubation if that doesn't help her breathing enough. They think the pneumonia came from aspiration. Eventually Claire got a hospital room in the InterMediate Care Unit. The newest wing of the hospital, the room is quite large and the couch folds into a small single bed. Antibiotics started, steroids, fluids. On by-pap machine, without it her oxygen was in the low 80's, at best. O2 level got up to 95% around 6:30pm on by-pap machine. Tests for covid, flu, rsv, strep and not telling what else all came back negative. Claire has the crud the turned into pneumonia. Sunday, September 25, 2022 Around midnight on Sunday morning, Claire had a fever, Mom gave her some Ibuprofen and it went down. At 6:30 am, mom noticed a light fever, with some congestions, so she gave Claire some cola along with some vitamin C and Tylenol. At 3:30pm, the fever came back and by 4pm, Mom gave Claire some Motrin and cough syrup with expectorant. When it came down, she gave her some airborne (liquid) and added a little more vitamin C to it, Claire drank 6oz of that. | ||||||||||||||
Happy 11th Birthday Claire!!
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March 11, 2013 | Claire is having a great day. She enjoyed some nice gifts from her family including a turquoise shirt with sequin on it. It received the most interest when presented, so she wore it today to school where her teachers had balloons and cupcakes prepared for her. On her way home, dad bought a cake and some yummy dinner, she enjoyed the icing on the cake and her dinner of choice was her favorite, bananas and rice cereal. A banner day for Claire, but not the end, there are two more parties planned for her. After expecting her to not make it to term when Mom was expecting her, her family is overjoyed to know God gave her to them for 10 years... and counting. She is such a wonderful child with an excellent disposition. She rarely cries and always smiles, even when tickling herself. She has a great disposition. God blessed the family and they cherish every day with Little Claire. |
April 27, 2012 | Claire has been in school all week and doing well. She's been sleeping well the past couple nights. Mom and dad still struggle with keeping her hands out of her mouth, even when she has just eaten. More armbands probably in order as she really has started to bite her little fingers. | ||||
April 23 | Claire has kept her food down, cough seems to be gone and she is a happy rested little girl. Today she went back to school with no issues and was there for the whole day! | ||||
April 21 | Mom and Dad discovered the only thing that tended to stay down in her tummy was applesauce, so she's been given that for a few days. She isn't having milk or dairy products, she is having some calorie powder and fluids when mom can get her to swallow them. | ||||
April 20 | After being out of school all week, and part of last week, Mom and Dad were worn out and Dad took Claire in to see the nurse. Claire seemed well hydrated, but still a loose cough that makes her gag often and usually after every meal. Mom and Dad discovered the only thing that tended to stay down in her tummy was applesauce, so she's been given that for a few days. The nurse sent Dad and Claire over for chest xrays. Typically, if they see something in her lungs, they say it is pneumonia, give her an antibiotic and she's back on her way. This time, they said it 'could be' pneumonia, and they reviewed her previous xrays, and said, 'it could also be something else'. Not wanting pnuemonia, but really not wanting something else, the family will just pray she gets better. She is on an antibiotic and will go back in 2 weeks for a chest xray if she doesn't need one sooner. |
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April 8 | Happy Easter everyone from Claire and her family. |
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March 24 | The last great HoooRah! before kids headed back to school after spring break. Mom and Dad took them down to Orlando for a Sea World trip. They went on Saturday and Sunday and Claire did really well. She ate great and enjoyed the sites and sounds from the 'wheelchaire' seats. The kids enjoyed rides. Big brother especially liked the roller coasters! Big sis enjoyed feedint and petting the dolphins. Everyone had a great time. | ||||
March 16 | Claire's big sister came to visit her in school today. Big sis's girl scout troop made bibs for Claire and her friends and delivered them today. The TV news was there too to take video. We may see it tonight! See photos. |
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March 11 | H A P P Y 9TH B I R T H D A Y C L A I R E ! ! Claire was up early with dad, eating breakfast and hanging with him as he picked up around the house to get ready for her birthday party. Mom and dad pulled a party together yesterday, inviting friends they happened to see, as it was very last minute and Claire was finally feeling better. She had friends over and had a big birthday time!! Mom made her a brownie cake with little shamrock decorations and she was able to enjoy the icing. Yum! Claire has been feeling much better the last couple days (the weekend). She's keeping all her food down and still has a little loose cough which she's learning to control (cough and not throwing up). She will go to school tomorrow and celebrate her birthday with her friends there too. |
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March 8 | Claire is home again today. Her cough is loose and she doesn't cough so much when she is sleeping on her stomach, so mom and dad take turns rolling her over during the night to buy a couple hours of sleep. She rolls back over shortly afterwards. She needs to be upright so her little nose can drain. She is getting lots of fluids and keeping most of them down. That darn cough makes her want to gag and throw up whatever it is making her cough, so tough to keep her from throwing up. Mom and dad feel like they can get her through this without going to the hospital. With her birthday this weekend (she will be 9 on Sunday), they are even more determined. Dad has a 'gig' on Saturday at SouthwoodStock and that should be fun. They are hoping Claire will feel better by then. No birthday plans have been made as mom and dad aren't too sure how she will be feeling, and if she is still throwing up, that could be a downer at the party. |
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March 7 | Claire still under the weather. Her coughing during the night was less than the night before. She is drinking her pedialyte with a little prompting from mom and dad and keeping down 3-4 spoonfulls of rice cereal and pedialyte. Don't want to give her too much and see it all come back up. In the evening, mom switched her from pedialyte to coca cola. She likes it, not the bubble so much. Mom gives it to her to add calories and cut some of that phlem... and settle her tummy a bit. She drank a couple ounces and ate a couple bites before drifting off to sleep. |
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March 6 | Mom and dad decided to keep Claire home today. She seemed to have a low grade fever in the evening. She was up all night dry heaving and so was mom and dad. Dad brought her into their room around 2am, since one of them was running into the nursery about every 30-45 minutes anyway. Mom slept with Claire and kept her upright so she could drain hope that would help her coughing. She only started to throw up every 10-20 minutes. Mom took her back and changed her diaper in Claire's bed. Mom left to throw away the diaper and wash her hands, when she came back, Claire was asleep, so she left her in her own bed and figured she'd be back in a bit to get her when she woke. Claire slept for a few hours. |
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March 5 | Dad woke Claire for school and she looked exhausted with red under her eyes (like she is sick). She was mostly ready for school when dad put her in her wheelchaire. She started crying. Dad could see she was congested. Mom held her, gave her saline and cleaned out her nose, gave her some fluids and went to work while dad wanted to be sure she would keep down her food, so he fed her and watched her for a bit. She did okay, so he took her in for the second half of the day. She did well in school, but you could tell she was wiped out in the evening. | ||||
February 4 | Beautiful morning. It is 75 degrees outside and the windows are open. Sort of an early spring, we are expecting rain a little later. Claire was up early and had some pedialyte, then breakfast. She ate great and eventually looked like she wanted to go back to sleep, so she went to bed. | ||||
February 3 | Busy day today. Mom had a couple meetings and was out of work to get home quickly as Claire's big sister had a middle school dance and her big brother had Senior Night at the high school basketball game. Claire was with her big brother on the court as mom carried her, escorted by dad. The team won, but Claire's brother showed deep disappointment, no fault of his own. |
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January 30 | Long time since we have updated our page. |
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January 28 | After they came home from a Habitat for Humanity build, Claire's big sister announced that she had a sore throat, and later came down with a fever. She went to bed in the middle of the day. Mom knew right then that she was sick, and later Dad confirmed the fever. | ||||
After Grandpa's death (Mom's dad), and then the tough holidays, it has been so difficult to be focused on anything. The past few months have been a blur, but the family has continued to focus on keeping Claire well and making sure she knows how loved she is. |
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October 24 | Claire didn't have school today, but being out last week, she and dad didn't know, so they were up and off to school first thing. They found out pretty quickly and decided a day of was well deserved. Big brother was home too, and if dad needed to run out, Claire's brother could watch her if needed. Big sis had school today. | ||||
October 23 | Claire was off to church in the morning. Them home for more rest and relaxation. A nice lazy day for her. | ||||
October 22 | Claire came home today. She was keeping her food down and doing so well. The family is so happy. Tonight she went to visit her aunt and uncle to watch some college football. Then afterwards to some friends to watch more college football. She slept much of the time in her mom's lap. Still recovering a bit and eating well. | ||||
October 21 | By 2:30am, Claire was finally getting her room. At 2am, mom had called dad, upset, and dad offered to switch places. Mom had a 10am conference call in the morning and knew it would be another few hours until she could get some rest. And that was after she calmed down. Claire seemed to be sleeping through it all. Mom tried feeding her again, but she just gagged so much and went into dry heaves, it just seemed mean to try. The fluids will help her with some of her issues with the phlem likely causing gagging... and the nausea meds will help if it is anything more than that. Dad is working on feeding Claire this morning and she seems to be keeping it down very well. Only a little coughing earlier today. She's been getting fluids and antibiotics by IV so hopefully that has stepped up her recovery a notch. |
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October 20 | While Claire's fever has gone away, she still coughs about every 15-30 minutes and often dry-heaves with that. It wasn't a restful night for mom and dad. Mom was up with Claire and trying to get in the fluids, with Claire pursing her lips. Mom gave her a few dropperfuls of cola (to cut the crud in her throat and settle her tummy... not to mention a few added calories) and some pedialyte with calorie powder, which Claire did not care for. Dad dumped it and put in straight Pedialyte and she had a few good gulps, maybe about 3 ounces made it in her tummy with one coming back up full of phlem. |
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October 19 | No fever, but not keeping food down. Coughing, gagging and dry heaves as mom is giving her only a little bit of fluids at a time so she will keep it down. | ||||
October 18 | Claire had an appt with the dr today. He gave her an antibiotic and an antib shot. Prescribed and antibiotic and nausea meds. Suggested if she was still sick in 2 days, to come back, she may need to be admitted to the hospital. Dad worked on her fluids, but had a difficult time keeping them down. Her fever came back around 11:30am. | ||||
October 17 | Claire came home and her big sis was playing with her and told mom Claire was hot. Mom thought it was because she was wearing a sweatshirt, went to take off the shirt and noticed she was very hot. Mom took her temp, 102 (under her arm) so off to the cabinet for some motrin. The temp came down and mom measured a decongestant. Dad stayed up with her a bit and her temp went back up to 102 and he gave her the decongestant, thinking it was motrin. At 3am, Claire was up to 104 (under her arm) and mom gave her some Tylenol, and a spongebath until her temp was down to 100. Exhausting night. | ||||
October 9 | Today the family left Tampa as they had a fun weekend with Mom's family at Claire's Grandpa's Air Force Reunion. A few hours after arriving home, they had terrible news that Claire's Grandpa wasn't doing well, and eventually passed away. He looked great all weekend and only 10 minutes before his passing he was talking to Claire's cousin and looked fine. Life is SO uncertain. Family and friends have been so supportive. | ||||
September 15 | Claire recovered after a restful day with mom yesterday and was back to school today. | ||||
September 12 | Claire is still under the weather. Not keeping food down, so she's on Pedialyte and Gatorade(diluted a little) a few ounces at a time until she can keep it down... then mom will add some calorie powder and eventually move to more solid food. She is perky and seems hungry. Thinking it is just some sort of congestions she's come into, and the fluids should help it flow a little better. | ||||
September 11 | Today is full of sights, sounds and memories of 9/11 on the tv. Can't watch a show without seeing it and hearing "Amazing Grace"... it is very overwhelming and eventually mom had a hard time listening to it. Our hearts go out to those on tv and off who have lost a loved one and continue to bear the saddness of moving forward without them. Claire ate breakfast and was off to church. Mom fed her later in the day and she threw everything up. She has a loose cough, and that started the gag reflex that prompted her to loose her lunch. She quickly fell asleep in mom's arms, so mom put her down for a late nap and will feed her again when she wakes up. |
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September 9 | Claire went to school Thursday and today, she did great. She enjoyed swimming and seems to be doing well, keeping food down and being her happy ol' self. | ||||
September 7 | Claire was up at 3am ... mom heard her up and listened for a bit. Claire threw up and mom was up with her cleaning her up. The windows were open as it was cool outside, though closed in her room, so mom put long pants and a sweatshirt on her and a blanket. The temp was expected to be quite cool at 6am. | ||||
September 6 | Claire came home early as she threw up at school. Her big brother was home from school, so he went to pick her up. She looked great, no sign of being tired or sick. Smiling and happy. | ||||
September 5 | Nice to have a day off. Everyone rested and enjoyed a rainy cool day. Big sister made chocolate chip cookies and mom worked on new arm bands for Claire to keep her hands out of her mouth and keep from gagging herself. She doesn't need them often, but when she does, they sure are handy. | ||||
September 3 | The family had a busy day. Thier favorite team was playing on tv, then around halftime they were off to a wedding. The wedding was fun and the food was delicious. Big sis enjoyed dancing until it was time to leave. Claire slept through much of the reception and woke up, danced a little with mom and dad, and then sat smiling until it was time to go. | ||||
August 22 | Everyone's first day of class today. Pictures taken and happy, sleepy faces all around. Claire had a nice first day. Dad took her to school and she saw her friends. | ||||
August 19 | Claire has her school orientation in the afternoon. Her sister had her school orientation just before Claires. Claire's new teacher made extremely large chocolate chip cookies and they were still warm. Big sister loved them (dad did too). Claire's teacher is a wonderful woman, and while her teacher from the past few years will be hard to replace, her new teacher seems like she is going to be great. |
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August 17 | Just got a call from Claire's 2nd grade teacher about her new school year orientation. Happy new school year everyone. |
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August 16 | Claire had a fun weekend at the beach. She just got home and is pretty exhausted. She spent yesterday lounging on the beach and then sitting in the pool for about an hour. Her cousins were kind enough to let the family stay at a beach house in Destin for the week, but since mom and dad had to get home soon, they only stayed until Tuesday. Claire is well rested with a little bit of sun to show for it... not much really. | ||||
August 5 | Claire was home with her dad, brother and sister since her ESY (Extended School Year) finished for the summer last week. Her next visit to school will be for the new school year. She doesn't really have a grade, but mom says she's a 3rd grader.Dad is out this evening working to get a rental ready for new students moving in... tis the season. |
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August 4 | Claire had a seizure early in the day... dad needed to run out to an appointment so mom came home from work a little early to watch her. She did great... ate well, but threw up once. No more seizures that evening. Yeah! | ||||
August 5 | Mom worked from home today and Claire threw up several times. Mom increased Claire's fluids to help her phlem. She did great in the evening keeping her meals down and being a happy girl. Big sister is going to be in a fasion show, so she went to the practice and met a real model who has an agency locally. It was exciting. The show is next weekend. | ||||
July 31 | Mom was up early and off to the grocery store. It had been a while since she'd been shopping and yesterday she was reorganizing her coupons. She did pretty well saving 43% of her grocery bill and stocking up on a few things that were on sale until they go on sale again. She feels that if you buy a few extra things on sale (not too many), then when you need more, you aren't forced to buy them at regular price. If she can save a few hundred dollars each month, she will be happy. It not only her new hobby, it is a challenge she takes on with pride. The kids sometimes want to help clip, so it is a family thing too. They are learning that you don't always have to pay full price... and those little savings add up. | ||||
July 20 | Claire was a big girl today as she got her molar (teeth) sealed today. She was able to hold her mouth open just long enough so the dentist could perform the work. Claire fussed only a little bit and at one point, she actually kicked the switch that turned off the electricity as the dentist was suctioning some saliva from her mouth. Yep, she knows what she's doing. Took the dentist and hygenist a short while to figure out what happened... when everything stopped working. | ||||
July 12 | Mom traveled this week for work. It was very exhausting, but worthwile. She was happy to get home and not be traveling... she missed her family and her home. | ||||
July 9 | Claire's big sisters birthday is today. She woke up to her Grandparents singing to her and fixing her a favorite breakfast. Later she had a birthday cookie (sugar cookie with cream cheese and whipped cream frosting topped with fresh sliced fruit). She was a happy girl and has a birthday pool party planned at her uncles in a couple weeks. | ||||
July 8 | Mom and Dad enjoyed an night out while Claire's aunt, uncle and grandparents watch the children. They had a great time just being out and able to talk without little ears listening. | ||||
July 1 | Mom and Dad's 22nd anniversary is today. They are traveling this evening to visit Claire's grandparents, so they opted to celebrate last night. Mom and Dad had a gift card, and with a coupon mom found, the meal was only $12... at Outback... with a full meal, drinks and an onion too! They were stuffed. Mom loves her coupons. ;O) | ||||
June 30 | Big brother has his senior photos scheduled today... mom isn't too happy thinking her little guy is going to be a senior in high school. Then, soon, off to college. sigh. | ||||
June 15 | Claire went to the dentist today and had a good check up. Tough teeth. She will get them sealed on her next visit ... now that she has her 8 year molars in, they will be protected. She tends to grind them down since her jaw is a little 'off'... so her front teeth don't meet up, she will never be able to bit into something and bit off a piece, but for now, that isn't a big deal as she eats pureed food anyway. | ||||
May 28 | Claire was off to the beach for the weekend. A weekend with friends and family... fun and sun. She enjoyed time down by the beach under the umbrella and time in the pool with mom... the pool water was nice and warm and several children came by to see Claire and say 'hi' to her. | ||||
May 6 | Claire's big sister is off to sailing camp with the Girl Scouts this weekend. The house is very quiet with her not here. | ||||
April 21 | Claire was at school and had a nice day. Dad took her in and picked her up. He and mom have switched cars since mom's is more gas efficient and dad runs around all day while mom just drives 10 minutes to work and her little car sits there for 10 hours until she drives back home. They decided it would be better on their budget to switch, at least until gas prices come down a bit more. | ||||
April 16 | Mom was feeding Claire, Claire started to hold mom's hand. It was the hand mom had the spoon in and Claire grasped mom's thumb as if she wanted to move the spoon back and forth. It was so sweet. Later, Claire took her hand and put it against mom's face and rubbed mom's face. It was so darling and mom smiled really big for Claire. | ||||
April 15 | Claire came home with awards. She has shown great improvement at school, including standing in her stander for 30 minutes and not squirming out. Also using a spoon with only help holding her elbow, from the OT. Claire got an award certificate, a coupon for a free dinner at the local pizza place, and a great report card. Mom and Dad are proud. | ||||
April 6 | Claire slept in. Dad gave her meds early, so mom opted to see how long she would sleep. She woke up late, and seemed hungry. Diaper change and clean up (green stuffy nose) and mom gave her 1/2 cup of warmed up applesauce. Hoping she would keep it down, mom held her for a bit and Claire had quickly fallen asleep. Mom put her in her bed, only to hear how congested she still is from her snoring. She really seems to need the sleep. Keeping the fluids going in too. | ||||
April 5 | Big storms coming through this morning. It was about 2:45am, and mom couldn't sleep... she turned on her iPod to see the radar image without waking dad (or getting out of bed) but realized they were under a tornado warning, so she opted to turn on the tv and check it out. Dad was zonked. So tired nothing would likely wake him up. Dad went to a 10am meeting and took mom's car. Mom's laptop was in it, (Rats!) so she worked from her email on her iPod, and fortunately it was fairly slow and her staff was on the ball (as usual). Mom fed Claire after waking up the Baire, only to put her back in bed, and hear her throw it all up again. Mom, exhausted and frazzled, opted to clean her up, drink a few sips of coffee and then get Claire off to the tub. Mom came home from her meeting as Claire was waking up. Dad had been watching her and needed to get Claire's sister from school. Mom gave Claire 2 more ounces of Pedialyte and they cuddled as mom worked. Claire slept much of the afternoon in mom's lap. About 6:30pm, mom put Claire in her rocking chaire (wanting to keep her sitting up so her congestion could drain), as Claire woke up, with her lip quivering. Mom noticed goose bumps on her legs (long pants, sweatshirt and socks, but ankles were showing), and mom took her temp. 99.6 under her arm (that is 100.6, since you add one to get an oral temp equivelant). Mom thought it might be too early to give her a tylenol, and thinking she should get one with a decongestant too, then opted jus to wrap her in a blanket and watch her for a bit longer. After 1/2 hour, she stopped quivering and seems pretty happy... mom will still get her some fever reducer and decongestant for bedtime. Crazy day, mom got a lot accomplished and still had lots of snuggle time with Claire. Looking at Claire this evening, you wouldn't know she was sick at all... just happy girl. :O) Claire had another fever in the evening, mom opted to give her a fever reducer, decongestant and her usual med. She also gave her some cola, to help with her congestion and coughing. |
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March 26 | Spending some time with Claire's Grandparents during Claire's Spring Break. She rested and go to cuddle with Grandma lots. It was relaxing for everyone and always a fun visit. Grandpa's vegetable garden is really taking off - he loves growing things, and to eat them too, that's just a big plus for him (and for everyone who gets to enjoy the bounty)! | ||||
March 20 | Claire had a few friends over for a party. Mom and dad aren't very good at planning parties, basically it stems from not knowing if Claire will feel well, so they don't plan too far ahead for much of anything. After Friday's escapades, mom decided to invite people as they saw them. Claire's uncle was out of town with Claire's aunt, and they saw few people so it was a small gathering. Claire wore her hat from her birthday at school... more of a tiara actually. :) |
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March 18 | Mom and dad are thinking of having a party for Claire with her friends on Sunday. Sure enough,this afternoon, mom got the call. Claire was throwing up at school. School nurse called and mom asked dad to go get her. Mom had a meeting in the afternoon and Dad was home with big sister who had half day and big brother who was out of school. Off he went to get her. He gave her pedialyte after he got her home and she still wanted to throw up some. | ||||
March 12 | Tonight mom and dad took Claire and her big sister out for Pizza. Yum. They re-celebrated Claire's birthday and snuck next door to the ice cream shop where big brother was hanging with friends... it was fun. | ||||
March 11 | Whoooo hooooo!! Happy 8th Birthday Little One!
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March 9 | Claire was up early and off to mass to get her ashes. She was really good during mass as her big sister was cantor (leading the singing in the mass). Afterwards, mom took Claire to lunch and met dad. Claire is gearing up for her 8 year birthday on Friday! |
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March 7 | Big sister is playing softball and was hit with a ball on her elbow. It seemed to have started an 8 run rally, but the team didn't win and big sis was not happy about getting hit. She took one for the team. | ||||
March 4 | Mom and Dad took Claire and her big sister to Pensacola for the weekend. The girls stayed with a friend who watched them on Friday and Saturday nights. It was a nice break for mom and dad, who met with friends for the weekend. | ||||
March 2 | Mom has started Claires PT back up again after the holidays took a lot out of them, then getting back on the schedule took over a month, but they are back. Therapy went well and while Claire's left ankle is tight, she still loves to stand and did better than mom expected. | ||||
February 28 | Claire had her IEP (individualized education plan), where parents and teachers meet to discuss progress and changes or thoughts. They learned that Claire holds her spoon for longer than she used to, but not much else that was new. Claire is doing great at school. | ||||
February 23 | The weather is so nice and the windows are open to enjoy the fresh air. Claire had a nice nap today after her breakfast... she ate and her thumb went right in her mouth... and she snuggled up against mom.. mom held her for a bit, then put her back in her bed and covered her up... she was so tired. | ||||
February 20 | The family visited Grandpa and Grandma this weekend. Grandpa turned 88 and was out tilling his garden on Sunday. Mom went with him to get some seeds and they made a pea-pole for Gpa's pea's to grow up. Also planted carrots, onion bulbs, beans and some Roma tomatoes and green peppers. They had a lot of fun in the garden. It was a gorgeous weekend and the time outside was well enjoyed. | ||||
February 19 | Everyone came over to Claire's Grandma's for dinner and mom Claire's Great-Grandma's Spaghetti sauce. It cooked all day and didn't have mushrooms... mom isn't a fan of the shrooms. They spent some time looking over Grandpa's garden and spending time with the 'rents. | ||||
February 17 | Mom had a nice lunch with a friend she's know a while... Dad went over to pick up girl scout cookies (big sister is selling cookies) so they could deliver them to family over the weekend. Yum! | ||||
February 15 | Before mom picked Claire up at daycare, she ran over to the ball field to watch Claire's big sister play softball. It is her first year playing and she seems to love it. She states she loves volleyball more, but is interested in pitching, so it will be fun to watch her blossom into an athlete. | ||||
February 14 | Happy Valentines Day everyone! Claire's sister and mom worked on Claire's Valentines cards last night and they are so adorable.. home made and all... Claire had a nice Valentines day and Mom made 'reservations' at Outback for her and dad... she had a few gift cards so they ate for free... yeah! It was a wonderful evening... made better by having times as a couple - a date - speaking without little ears listening and little voices asking 'who are you talking about, what did you say, why did they do that?' Yes, a quite evening. :O) | ||||
February 9 | Today is Claire's big brother's birthday... he's so old now! :O) Claire enjoyed her day today. She's been eating well and making some new noises that she enjoys hearing, and we do too. She's really playing with her hands more and that is encouraging to mom. |
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February 2 | Claire had a nice day. She was in her stander for a while and fell asleep, as she usually does. She ate really well today too. She's been so happy even at 3am, when she's wide awake and she's trying to get her fingers in her mouth. | ||||
January 19 | Claire was home with her mom today... eating and getting fattened up! She was smiling all day, no nap though, she should sleep really well tonight. Dad went to help coach a local high school team and big brother went too. Big sister is busy working on a poem and the rest of her homework. Mom put a pork roast in the slow cooker this morning, so they had pulled pork for dinner and it was delicious... and so easy! Slow cookers are great. She made a roast on Monday and the family gobbled it up and had friends over too. | ||||
January 17 | Its a Holiday! Everyone gets one more day off and mom gets a day to get over her jet lag from her trip. | ||||
January 12 | Mom was off on a trip with her sisters, Claire's Grandma and other friends. It was a fun trip and a nice get-away for mom. Dad took over mom's duties and did a great job, including taking the kids to a wedding a few hours away. | ||||
January 11 | Dad's birthday today! He recieved some fine gifts early in the morning and had lunch with a friend later in the day. | ||||
January 5, 2011 | Claire is having a nice day today. She is a little irritated about having to password her guestbook because of spammers, but is posting the password here to see that will help some. She really hopes mom will be happy with this change. Mom isn't seeing the required password, but if it kicks in, you'll have it. | ||||
January 4 | Claire went to school and had a nice day. Mom went over to her and she was kinda dazed. Mom was a little alarmed, but got Claire's attention and put her in the car. Mom opened windows and cranked up some tunes and Claire was soon rocking and smiling. It probably helped that it was 60 degrees out, but she was enjoying herself, that's what matters. pw here. It is: ClaireBaire . |
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January 3 | Claire's school hasn't started back since the holidays, so she's home with her sibs and her dad. Mom picked up a new car today as she's been driving a '93 Honda Accord (original owner, you do the math - she got it Dec '92). It was weird for her and she was freaking out all day about it getting a 'ding'. Everyone tells her she 'deserves' it, but how can you feel like you deserve something when you are pretty happy with the car you have, and it runs, and no payments (none for 12 years), just hard to jump into the committment. Life goes on. | ||||
Claire and her siblings posing for the family Christmas Card. We hope everyone had a terrific Christmas and wish you a very happy new year! |
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