Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 59
|February 10||The family went to church today and enjoyed a nice relaxing day. Friends are still sick, so no chance of having anyone over for dinner. Too bad too. Tomorrow is 'denim day' at the kids school, so they can put off doing laundry one more day.|
|February 9||Today is big brother's birthday. He wanted to have friends over, but so many of them are sick and can't come over. So he hung out bored all day and in the evening the family went out for an early dinner. Brother got to pick and he chose a small Italian restaurant where the family usually gets pizza. It was a nice evening. Mom had some sangria and chicken parmesan, little sister had cheese bread as she was sure there was nothing on the menu that would interest her. Mom said she would make her mac and cheese when they got home, but she at Alot of cheese bread -- it was very good. Big brother and dad ate calzones and Claire's diaper bag was left at home - obviously not on purpose. Mom packed it with Claire's dinner and usually feeds her (when the family goes out to eat) after they order and before the food comes. Tonight was a bit different. Dad knew the owner and Claire's parents asked if they could chop up some noodles for her. The owner made some angel hair pasta and chopped if up really well and served it up with olive oil and there was quite a bit of it. Claire ate most of it and loved it. A little Italian coming out in her. :o)|
|February 8||Claire had a dr appt today to follow up on her hospital stay. She weighed in at 19lbs, she obviously lost weight over the recent week, and the dr mentioned that the hospital dr was surprised at how well/quickly she recoverd. He didn't have her test results back yet, so he didn't know if she was cleared to go to school yet.|
|February 6||Claire has been in a great mood. Today she went to the dentist and the dentist said her teeth look great and well cared for. One of her front teeth looked chipped and so the dentist put a type of filling on it and smoothed it over. It looks great.|
|February 4||Dad stayed with Claire all morning and was quite exhausted as expected. Claire
had an echo today and no stool, so she was released from the hospital in homes of getting a sample soon. Once tested, if the bacteria are gone, she will be able to return to school and will no longer be considered contagious.
Dad opted to give her fluids after her meals in hopes of helping things along. Mom and dad decided to hold off on miralax since she's been through so much lately with the dehydration and means of being dehydrated.
Mom picked up the older kids after work and found out that many children at the school are out or have gone home with fevers. This would be what big sister has likely.
|February 3||Mom came home from her trip today. While she was driving back, dad called and said they found the bacteria that seems to be the culprit of Claire's sickness. It was a bit of a relief to finally put a name on it all, and it was totally unrelated to Claire's typical challenges. As, mom rolled into town, she was pretty tired, but decided a shower was in order. As she was coming out of the shower, a friend of the family dropped off Claire's big brother and he and mom started working on a project due tomorrow for school. He had most of it done, just needed to put it all together. As they worked on that, dad called and wanted to get home from the hospital to shower, so mom took some clothes for Claire and went off to the hospital to stay with Claire. Dad picked up Claire's big sister, dinner and went home to shower. Meanwhile, mom fed Claire, changed her diaper and spoke with the dr. Dad returned and mom and dad watched the halftime of the superbowl, then mom left to get the older kids to bed. It was a hectic day an mom still didn't get to bed before 10:30pm. Mom needed to go to work tomorrow as she was out all last week, and no telling what this week will bring.|
|February 2||Claire had a good day. She would be allowed to eat today. She kept her food down when she was finally allowed to have it (late in the day) and later dad learned that he could have fed her more, but no one bothered to tell him that part. Claire is a real trooper. Dad has been terrific watching her and staying with her the entire night. He also made arrangements for the other kids to stay with friends and family and arrangements for Claire's uncle to watch her so dad could show houses. It was a stressful time, but he's pulling it off while mom is out of town.|
|February 1||Mom was trying to call dad much of the day. She got him in the evening, only to find out that Claire was in the hospital. Dad told mom Claire had a very high fever last night with diarrhea and throwin gup... and the fever reducing meds took a long time to 'kick in'. He was very worried and it never really went down. By 10am, he was in ER with her, he needed some help, and it was a good thing he went. The drs ran several tests in hopes of finding out what Claire has, but the results could take days. She had her 'fluids topped off' as her Grandpa would say... translation: IV fluids for her dehydration. And she was given IV antibiotics. Eventually, things calmed down a bit and it was a hurry up and wait situation... hurry to get her stabilized and then sit around and wait to be able to feed her and wait for tests. Mom was worried about Claire, and almost as much worried about her daddy, who took control and handled everything so very well. Got Claire to the people who could take care of her and get her back on the mend. And they will.
Mom felt certain that Claire got the bacteria from her school as no on in her home has anything like that. Even with big sis's fever, there wasn't all that other dehydrating stuff going on with her. Dad was also told that several children from Claire's school are out sick.
Meanwhile, mom called Claire's uncle, who was watching Claire's big sister, only to find out she had a fever too. <sigh> Mom was concerned since her fever seemed to have come back. Big sis also developed a cough. And mom was a 5 hour flight away. She knew even if she could get a flight out, she'd still have the long flight and drive and since Claire was stabilized, and dad would be upset if he thought her vacation was messed up, she opted to go through the motions of having fun for the evening and get on the flight the next day as scheduled. It truly took the fun out of the trip, and mom's heart was right there with dad in the hospital.
|January 31||Dad was called to get Claire from school. She had diarrhea and needed to be picked up. Evidently, she threw up twice and then had a small fever. It all went downhill from there. Mom was out of town and dad was in charge. Around 10pm, her fever spiked up to 104 and dad put her in the tub... it was up to 104.5 and after the tub it came down to 103. The lowest it reached 102 when the tylenol kicked in (under her arm) and never came down from there. Dad monitored her closely all night.|
was off to school today to play with friends... she's in a great mood. Claire's big sis is resting up one more day before school tomorrow... fever free hopefully.
Mom was getting ready to leave town today to go on a trip with her sisters and Claire's Grandma. It was her annual trip to get a break from the routine of work and kids... as mom was leaving, she kissed Claire's big brother and big sister and noticed both of them felt warm... almost feverish. Mom made them each take their temp before she would leave... both were normal, big sister's temp was about 1 degree off. Whew. Mom left for Orlando where she would meet up with one of her sisters and they had a flight with everyone else leaving first thing in the morning.
|January 28||Claire had a fun day staying home with mom and big sis. Sis was sick today so she stayed in Mom and DAd's bed all day and Claire played with mom in the tv room in between meals and naps. Claire's sister had a fever and it reached 103.9 before the motrin kicked in and finally she broke it.|
slept well last night. She was fussing just as dad went to bed
and mom got up to see what was going on. Her arm was in the little
holder thingy to keep her from gagging herself, so mom took it
out and Claire went right to sleep.
Mom woke her this morning and off to school adn work they went. Mom mentioned to the nurse that she was still trying to get Claire a 5 year old well baby appt, but we will see how that goes. Evidently, Claire just needs to have the appt by her Bday, so that is helpful to mom.
seemed to enjoy her day at home... she ate great and napped off
and on all day... probably because no one really entertained
her. Mom's computer wouldn't boot and she had to completely clean
the registry files and that meant reloading several programs,
but her data stayed intact and the computer finally booted -
yeah. Claire's big brother was working on his history fair project
much of the day and her big sister was cleaning her room in between
tantrums. It did get cleaned and it looked awesome. Yeah big
sister!! Mom worked with Claire's standing and stretching today, she
likes to curl up in a ball, so mom knew that it was needed.
Claire ate several small meals instead of fewer large meals and it seemed to keep her happier and more awake throughout the day. She's been keeping her food down great and her diapers have been the fullest of any mom has ever seen... and very constant... changing diapers more than ever.
Everyone enjoyed the day at home, it was quite cold outside (low was in the 30's) so everyone drank hot chocolate and stayed warm.
had a nice morning. The church was packed for mass, so mom opted
to take her to the nusery as Claire can be quite heavy to hold,
esp when mom was wearing high-heel shoes. When she went to get
Claire, the peanut was passed out on a blanket while the other
children were playing all around her. She was exhausted. She
had a nice day, hanging out in her stoller and falling asleep...
but when mom or big brother put her in her bed, she'd be wide-awake
and ready to play.. go figure. She was probably better off staying
in her stroller to sleep. Mom thinks she just likes being in
the middle of everyone coming and going and cleaning up.
Later, friends came over and they ordered pizza and dad made yummy brownies... mom made hot apple cider for the kids and then they all went out to play in the 30-something degrees evening. The moon was full and Claire's big sister was so excited about it, and how bright it was outside... no flashlights needed!
|January 19||Claire had a nice lazy Saturday. Not doing too much. Her sibs cleaned up the house, doing their Saturday morning chores and did a pretty good job this morning, allowing them to watch tv, etc. Later mom decided that Claire's big sister's room was quite the mess, so no tv for her until that was cleaned... by afternoon, all tv was turned off.|
|January 18||Claire's nurse had sent something home recently to let mom know that Claire needed a physical. Mom questioned that, but realized it was actually her 5-year shots that were needed. Mom called the drs office to get an appt for the shots as she was informed that Claire would not be admitted back to school without the shots after her 5 year birthday (in March). Mom called, and was told all the 'well-child' appts were taken. Evidently, there was no way to get an appt before March and after the woman making the appt looked and looked, it was finally decided that she would call mom back. Mom will try again on Monday. The woman suggested that the shots are usually given at the physical (which Claire had at the beginning of the school year) and mom told her that at the physical, Claire was 4 1/2, so 5 year shots were not discussed. And now she needs an appt before her 5 year bday to get her 5 year shots. whew... fingers crossed they can get an appt. If not, maybe they can go to the walk-in place.|
slept in and then off to PT. Mom kept the appt once more and
private payed for it. It was a good appt, they went over stretches
that mom needed to work on with Claire. No word on the appeal
process. Mom will keep everyone posted.
During the appt, mom got a call from Claire's account manager at the insurance. She had some suggestions for Claire to get PT... she mentioned that Claire goes to a school that provides PT, however she didn't seem to understand that the PT is only once a week, Claire needs more than that if she is going to make great progress. She also mentioned Claire should apply for medicaid, but perhaps she doesn't realize it is based on financial need, and every other year, mom and dad likely don't meet the guildelines for poverty. She suggested private pay at a local therapy office in town, but why would mom go private pay there when Claire's therapist has been proven (to mom and others) to be one of the best and most highly regarded therapists in town. Anyway, mom was a big frustrated on the phone speaking with the account manager. Certainly, she was trying to help, but mom was still not happy that they couldn't see the condition that Claire had ... and not see it as an injury requiring one-time therapy. <banging head against wall - headach starting in>
was up at 4am and hungry. Mom fed her and they were both back
in bed by 5am, but Claire wasn't too tired. Mom turned the monitor
volume down slightly for the sake of getting some rest. The happy
squeals in the darkness was not easy to sleep with, and mom could
still hear them, they just weren't as loud.
Claire was up again early, around 7am, and hungry. Mom asked her if she had a hollow leg cause she wasn't sure where Claire was keeping all that food. Mom gave her a snack before school and told the teacher that "if Claire seemed hungry after just eating, she probably was hungry", as she is eating her self silly lately. Growth or a cold, mom isn't sure which, hoping for the former.
Mom will have to start tackling the whole insurance thing again today. sigh.
|January 13||Claire was up in the middle of the night hungry. Mom was up with her feeding her and all went back to sleep soundly. Claire did well in the morning, eating and finishing up her breakfast after mass. Claire didn't go to church today and dad stayed home with her. The family went to a later mass as they couldn't quite get up early enough... esp with Claire's late night snack. But the later mass allowed mom to sleep in a bit, so all wasn't lost. Claire fell asleep in her stroller again, and she slept until mom woke her for a late dinner and then put her to bed.|
had a nice morning, loves those middle of the night meals too.
Mom has too much guilt that her little one is so skinny, so she
gets up with her and fills her tummy for a restful night for
The family went to a funeral today. A 12 year old child that went to the kids' school - he was diagnosed with leukemia over the summer and passed away just after the new year. Claire's brother is in the little boy's sister's class, so mom and dad felt it was important that he go and they be there for him. They had a nursery, so mom took Claire to that so she wouldn't be too loud during the funeral mass. It was a very sad experience, but the family's strength was such an amazing inspiration. Mom and dad could never imagine being that strong. The boy's parents and sister were quite together and held up well during the service.
After all of that - about 4 hours after the funeral started, the family returned home and cleaned the house. Dad had invited some friends over, tho eventually most of them cancelled - it was a long exhausting day for everyone - and one friend came by to play cards. That was a nice way to switch gears from the sadness of the day. Claire slept through it all in her stroller and eventually woke for dinner and then off to bed.
|January 11||Today is dad's birthday, but Clarie was oblivious to it all. He had a fairly nice day, tho he wanted to play golf, and it rained all day (some storms too) and he wanted to have friends over, but many were going to a wake for a little boy who went to school with the kids. Tough to celebrate a birthday with that looming... and all the sadness that goes with it. Mom did take dad to lunch and Claire was there for smiles and cuddles throughout the evening. Mom and dad went to happy hour for a short time... pretty low key.|
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