Claire's Journal -- 24rd Month

March 10


Claire slept through the night... and she was in bed by 9:30pm... mom too!
She was up for meds and off to daycare very early. She was hungry this morning and mom was glad to see it.
This is Claire's first day off antib's since Feb 9th, so mom is really hoping she will learn it is no longer winter and she can stay healthy for a long while!
Claire's early birthday gift from her webmaster is a Guest Book. If you want to send her birthday wishes, or just a note of any kind, please feel free.

If you want to come by and wish Claire a happy birthday in person, the family will be having a 'happy hour' on Saturday evening at 6pm. Children are welcome, gifts are not necessary.
Please RSVP if you wish to stop by.

Claire ate very well at daycare and came home to eat even more. Mom will give her cereal and bananas tonight by spoon, as she wants to be sure Claire is full before bedtime.
Claire had her yummy cereal tonight for dinner - by spoon - and ate a lot - maybe 4 oz, followed up by some formula with pedialyte in it for flavor (that's the unflavored pedialyte, now with a new improved flavor - says so on the bottle - added to the formula for a better flavor -- way too funny!)
After making a nice mess at dinnertime, Claire had a nice long warm bath and was off to bed after drinking a bit more formula... around 9:30pm.

March 9


Claire slept through the night. Mom was pleased.
She was up early for meds, breakfast and a bath and dad took her to her dr appt as mom had a meeting at work. After the dr appt, she went to daycare until mom could pick her up. Claire has appts this afternoon with Music Therapy and Hospice.

March 8


Claire didn't sleep really great, but did sleep pretty much through the night. Mom woke her early for breakfast and a bath as she has Physical Therapy today. Dad took her to therapy and she had a therapist she used to see at her home, and is seeing this month as her regular therapist is on vacation for much of the month (a well deserved one too).
Claire had a good day at daycare following her therapy and mom picked up the kids for their dental appts (no cavities and big kudos on great care given to their teeth!), then she picked up Claire from daycare.
Dad fixed dinner for everyone, smothered chicken with corn and noodles... most delicious. He and mom commented on how nice it was to have a home cooked meal, as it has been a while. There's been a lot of pizza flying around here lately...
Claire went to bed after her meds and bottle, but not too happy and couldn't seem to settle down. She and mom were in bed by 9:30pm, but with random cries, mom gave her some mylcon for gas. Eventually, she settled down and fell asleep, around 10:30 or 11pm.

March 7


Claire had a good night. She slept in her bassinet with her mattress propped a little higher so she could 'drain' a bit. She woke up clean and spry.
She still has her head cold, and mom gave her some decongestant, along with med and antib, so she was almost full by the time breakfast came. Little Dear.
Claire will be 2 years old this week!! P-A-R-T-Y   T-I-M-E  !
Claire's been getting the run around on her meds lately -- so what's new? hehehe!
Her health plan approved filling a prescription early since her dosages had increased and the quantity had not. The drs office called in the larger quantity of her prescription last week, but all this seemed difficult for the pharmacy.
At first they said they couldn't fill it because the insurance wouldn't pay, meanwhile saying the dr needed to re-up the prescription, which they did. After the insurance approved and after the presc was called in a second time, mom called in and they said the dr hadn't called with the new prescr... mom was steamed (and it takes alot to steam mom) as this had been the second time the dr's office had called it in and she was sure it had been called in... so she sternly told the pharm 'YES it WAS called in!'... and she had to say that twice before they would ask someone else to see if they had taken a call from Claire's dr. Evidently, someone had talked to the dr's office, and they were going to fill the presc in 45 minutes. No apologies from the pharm. That call happened at 6pm. Mom was home with the kids and realized it was getting too late to go out, and Claire had maybe 2 doses left, mom was cutting it much too close for her comfort, but would get the prescr tomorrow. She got a call at 10pm that evening from the pharm saying that they would fill the presc on Wednesday, as they only had 50 of the 150 doses... mom asked them to fill it with what they had and she would get the rest when it came in... guess it is a good thing dad didn't go down to get the prescr late in the evening, it seems to always be his luck that they are never ready, and this would not have been filled when they said it would have been... and mom would have possibly heard some choice words. Why doesn't mom just go to a different pharm? Well, there's a new one opening close to Claire's home, and she is planning on changing then.
Meanwhile, the health plan woman has been terrific calling mom often to see if the prescription was filled and getting an earful from mom about the pharm and the run-around... it's been just so darn nutty, almost comical. It goes without saying that mom sent an email to the pharm website. .. she also may send one to Claire's insurance to tell them how wonderful the woman was who has been following up with mom.

March 6


Claire slept in her swing as she is still congested and mom wanted to keep that head 'flowing'. She was up for church in the morning and greeted by 5 11-year-old boys who were sleeping over for big brother's birthday. Mayhem when added to Claire and her big sister... but much fun all the same.
Church was fun taking all the boys. Claire slept through mass and a few heads turned as she started snoring loudly. The boys got a big kick out of it.
In the afternoon, dad was home after getting some work done, and mom and Claire and big sis too a nap... a nice long nap until the cabinet guy came by to go over some kitchen cabinet plans with the family. Mom's new kitchen is still not in site, but they are getting closer!! Grandma and Grandpa called to see if they would be coming up for Claire's birthday bash, but opted out as they should be seeing the family soon at WDW and also for Easter.
Dad had another work-related errand to run, then came home with dinner and the kids were quickly whisked off to bed. Claire to bath and then a nightcap. She had eaten a good 8oz earlier (bananas and pedialyte with some barley cereal) and threw up an oz of it as she started coughing. Mom thinks it is just her gagging on some drainage going down the back of her throat and mom has the same thing, so she can relate.
Claire was in bed by 10pm... and snoring again, with O2 blow by.

March 5


Claire hasn't been sleeping too well lately. Dad thinks it is teeth, mom thinks it's hunger and gas. Either way, she's been up late and dad has been so good to talk over late in the evening as mom has a head cold and feeling very tired. Working full time with a cold isn't easy, but manageable with decongestants and coffee. A little Vicks at night and lots of vitamin C and aspirin!
Claire has a head cold too, but dealing with it very well, not complaining much and taking it in stride.

March 2
13lbs 10-1/2 oz


Claire had a very good night, as she has had for several days. Mom is still trying to recover from her trip. She went to Vegas with her sisters, mom and friends. Eight women total and one St. Nick convention... it was crazy. Sorry, can't say more... you know, 'what happens in Vegas...' and all.
The teeth are really poking through now!! Check out the top teeth (click on pix for larger image)!
Claire had PT today. Her therapist is going overseas for 3 weeks, so Claire will be seeing another therapist (who used to come to the house to see Claire back when she was small :o).
Claire had a haircut today, she's looking very stylish in her new cut. She has music therapy and hospice nurse visit today... maybe even a weigh in!
Her music therapist is teaching her some sign language, it is very cute to watch. Claire's nurse came by and said her lungs sounded really good! Her upper right lobe was still sounding gunky, but the rest is sounding good and clear. Yeah Baire!! She weighed in at 13 lbs and 10 1/2oz. Her last weigh in was 13lbs 5 1/2 oz.

February 22


Claire slept through the night. Mom woke her in the morning for meds and breakfast. Dad will be taking her to her heart appt then to PT today.
Claire sees her pediatician tomorrow.
She has been eating excellently lately... lots of shakes mixed in with a formula/ped every now and then to keep things loose. Mom is stil adding a small amt of vegetable oil to her formula randomly and giving her vitamins in the morning that include fluoride. Claire is gaining energy and the smiles are coming more frequently, like very time you look at her and talk to her. She adores the attention! And mom adores the smiles, they make a great team!
She hasn't shown any signs of a relapse so mom is very happy about having the antib's continued... how wonderful it will be if she can stay healthy the rest of winter! (fingers crossed!).
Claire's cardiologist said her heart looked good and her VSD should be closed by the time she's about 6 years old.
Mom picked up Claire and noticed her right tooth appeared to have broken through the gums. She came home from daycare and she guzzled down 8oz of shake.

February 21


Claire had a very good night, she was up at 4am until 4:30 drinking 3oz of formula. The kids were off today for President's Day, so dad stayed home with Claire's brother and sister as he also had many errands to run today. Claire went to daycare after 4oz for breakfast and drank another 10oz at daycare, then at home she drank about 12 more oz before evening meds and daddy put her to bed. Claire drank 27oz today.

February 20


Claire went to church today and threw up as her brother had just finished holding her and handed her to her daddy. Mom took her away and changed her and cleaned her up, and decided not to feed her until they got home. She must have been 'too' full as she was very content during church. Her recent throwups seem to be related to her random seizures. She may have one a day, and they are barely noticable, but seem to be enough to occasionally prompt her to throw up. Poor peanut.
In the afternoon, the boys went to the FSU vs GA Tech basketball game, FSU lost at the last second with a bogus foul call.
In the evening, Dad and big bro watched the all star basketball game. No school tomorrow so it is okay. Claire had a banner day drinking over 24 oz today.

February 19


Claire had a nice day. She was a lounge lizard today as mom didn't want to take her anywhere. Her brother had a game, and mom had some shopping to do, but kept her home from all that. Mom will be going out of town next week and wants Claire as healthy as possible for her daddy.
In the evening, the family picked up some buffalo chicken fingers and went to a friends home for dinner. Yum. They were up a little later than usual, but the kids are out of school tomorrow.
Claire drank 28oz today.

February 18


Claire had a nice day. She went to daycare after her PT. Mom got her haircut and is pretty happy with it. The kids have 1/2 day at school today and then can go to afterschool. Claire's big sis will have a birthday party to go to for a friend in her class at 2pm, so there will be a lot of logistics to work out. Dad will likely pick up the kids, go to party and mom will arrive by the end of the party to pick her up... whew.
Mom called the drs office today to see if Claire's antib's could be extended. Since mom will be going out of town next week, Claire would be due for a relapse just as mom was boarding the plane if she wasn't on antib's. The dr approved and filled a new prescription. Mom kinda thinks her relapse last time was due to her coming off the antib's just before she was fully better. Mom is very excited about this decision... and much more at ease about how Claire should start gaining more weight if she could just stay healthy through the rest of winter.
In the evening the family had friends over and ordered pizza with vegies and cheese. The kids had a great time running around outside and came in to watch Peter Pan. 4 of the 5 kids, Claire included, fell asleep during the movie.
Claire had a banner day drinking a lot of food today. Claire drank 16oz today.

February 17


Claire was up and off to daycare.
She had her RSV shot today and mom saw another mom who she hadn't seen in a few months. Mom is looking forward to calling her... maybe in a couple weeks when things settle down a bit more. After RSV shot, Claire was off to meet her hospice coordinator. That is always a pleasant visit... and nice for mom to have someone to chat with about everything and get some feedback. Mom is a little nervous as she's going out of town next week, meeting her sisters and mother, and is nervous about leaving Claire with dad. He's fully capable, but mom is thinking if Claire is up at her usual 4am, that dad will just get too tired too quickly. Mom's brother is in town and his wife said they would be on stand-by, but not too sure dad would ask for help. His business is really picking up too, so he will be very preoccupied with that. Claire also ends her antib's on Saturday, and lately, a few days after her antib's is when she tends to have a relapse and get sick again. So mom is nervous about that too!
Mom is considering asking the dr to 're-up' Claire's antib prescription. He did mention he would consider it once she got better as she has a 'chronic' lung problem, which is usually treated with a consistent dose of antib's. Mom will call him to see what he thinks. She is certain she has at least enough to get through the weekend and part of next week.

February 16


Claire slept through the night. Mom woke her in the morning for meds and breakfast. Afterwards, mom tried a little PT. Claire stretched a little and then up on top of the big ball. Claire enjoyed sitting up there, she was queen of the mountain... and mom bounced her... and bounced her a little more... and Claire's head slowly started to come forward... not because it was the behavior mom wanted, but rather because Claire had a nice full tummy and bouncing is what Claire's like to do best. She was going to sleep. Mom was thinking a change in position would be good to keep the pumpkin awake, so she put her on her tummy on top of the big ball. She rolled Claire back and forth on the ball and Claire, once tight, was really loosening up, mom was so pleased, until she notice Claire had fallen asleep. She likes tummy sleep best. Mom put her down for her morning nap. Claire drank 24oz today.

February 15


Claire was up at 3am for a bottle. She drank the 3oz that mom fixed for her and wanted more (er, wasn't tired) so mom fixed another 3oz. Claire drank one and finally went to sleep.
Mom woke her in the morning and she was off to daycare after a couple oz of shake. Her breathing looks good and shallow, like she's not struggling. Her coughing in minimal, and she is giving her family a few smiles, another sign she is on the mend. She's still on her antbiotics, and they should end around the 19th.
Claire had PT this afternoon and had a great day. She was in good spirits and wide awake. She loves rolling over (with guidance) and she held her rattle and tried to get it in her mouth. The therapist turned the rattle around so the small end was by her mouth and Claire held it in her mouth and gummed it. Mom was so very happy, as Claire was unable to teeth on her own (probably why the top teeth are still elusive) and Claire was so happy ... and looking more independent. Mom was hoping that eventually she would be holding her bottle. Probably have to work with a 2oz bottle for a while to build up those muscles first. She played on the big ball, first sitting and practicing keeping her head down, then laying and rolling and then standing, but not much of that.
Claire had a good day at daycare, she had about 5-7 oz and then drank more when she got home. Dad was a bit under the weather, so he layed on the bed feeding Claire most of the evening. She drank about 8 more oz. and in bed by 10pm. Claire probably had close to 20oz of shake today.

February 14


Claire was up at 6am for a bottle. She drank pretty well.
Claire's sister is doing well and off to school today.
Mom was hoping to hear from her hospice nurse today to see if Claire could go to daycare. Mom took Claire off the oxygen canulla and watched her and she did great. Claire had OT today and Dad took her and then off to daycare afterwards.
Mom went to Claire's brother's school for a Valentine's party and then off to work afterwards.
In the evening, everyone was home and after a nice dinner, Claire had her evening routine and off to bed. Mom noticed only once that Claire looked off as if she could have been having a seizure, but maybe not. It wasn't obvious, so if it was one, it was a very small one.

February 13


Claire had only a couple seizures today. They didn't last long at all, maybe 5-10 seconds. She had a good day and drank very well... about 24oz today. Mom is hoping the seizure problem is behind her and they will be seeing more smiles in the near future! Claire drank 24oz today.

February 12


Around 1pm, Claire started having seizures. The were anywhere from 5 minutes to 30 minutes apart... Mom called hospice and they said they would try to reach the dr. They called back later and said they would need a tegretol level (blood work to see what the levels are of Claire's seizure med). Hospice was great in trying to round up the dr's office and talking with mom to see what the best way would be to get the level and get it read. Plan A was to get a hospice nurse to take the level, plan B was to go to the Health plan office and have it taken there, and Plan C (the most dreaded perhaps because of the time involved and the exposure to other very sick people) was to go to the ER.
Hospice was terrific in rounding up a nurse who would take the level... mom was pretty drained and asked dad to take Claire to have the blood drawn. He brought Claire back and ran the sample to the hospital lab to have it read. Hospice included their fax number so the hospital would sent the results to them.
Meanwhile, mom gave Claire her 2pm meds early and hoped for the best. She didn't want to give her an increase in the dosage without the dr's okay, but also because if the levels were taken, they could be skewed.
By 10pm, the results were back and hospice called saying her level was 3.8 and normal was 4-10... so they were low. Mom decided to increase the dosage only a small amount for her 10pm dosage and Claire would only have two dosages before they could call the dr in the morning... knowing that is what he would tell her to do anyway.... the levels were low and that seems like the obvious thing. The hospice nurse agreed. Claire was wiped out, and slept well through the night, between mom and dad. Mom didn't notice any seizures during the night, but then, she was so exhausted from the day, who is to say she didn't have them.

February 11
23 months


Claire's hospice nurse came by to see her today and said she was continuing to improve, but to keep the oxygen on her during the weekend.
Claire's sister was doing well enough to go to school today (no fever in the past 24 hours) but since she's only in Kindergarten, and someone had to stay home with Claire anyway... and since it was Friday, what was one more day... so mom and dad decided to keep her home today, just one more day to be sure she was really healthy before shipping her back to school on Monday.