Claire's Journal -- Month 39

June 9


Claire slept off and on, and so did mom. Around 2am, she started having dry heaves again, so mom got up with her and rubbed her back. When she was done, mom let her sip some pedialyte (with duocall and thick it)... but only a little as mom was sure more than a sip at a time would come back up. This reminded mom of when Claire's sister was under 2 years old and had a nasty rotavirus. Only Claire doesn't have the diarrhea. Claire's temp was up to 99.3, and mom and dad each checked it again within the hour and it never went up to 100, and she finally went back to sleep (without tylenol), so they did too, around 3:30am.
Mom's pretty exhausted, but got kids to summer camp and then off to work. Called the dr, waiting for a call back. Claire is home with her daddy who is giving her sips and going to give her a little cola later to see if that will her settle her tummy or help with the gunk she may be trying to get up. Mom hadn't really noticed anything in the throwup, so she's thinking it could be a stomach thing.
Dad called and said the nurse called back. Dr is going out of town at noon (it's 11am) and that she should go to the emergency room (ER) for fear of dehydration. The other dr mom likes can't see her since she's been throwing up.
Mom suggested, since ER is open all the time, they work on the sips method of feeding to see if she can keep some down. At least for a couple hours to see how she does. Dad was working on it and said, of the 3 oz, less than 1oz came back up. Mom and dad don't think Claire should go to ER yet. Her skin looks good and she's got some energy... no signs of dehydration, just gotta keep the food down and they are going to try without the germs and craziness of ER.

June 8


Claire slept through the night. She had dry heaves in the morning and mom decided she should stay home. Dad stayed home with her with a request to give her pedialyte. Mom fixed it with duocal and some thick it. Dad said she drank 6oz but up came about 1 or 2oz. Mom was okay with that... she was monitoring from work. The other kids seem fine today.. guess it is Claire's turn. Claire seems to have minor congestion and trying to cough up gunk... hopefully the clear fluids will help her get over it. Fingers crossed.
Claire had a fever during the day, and another one later in the evening at 7pm of 100.8 with random throwing up. Mom gave her some tylenol, a sponge bath, new outfit and diaper change, meds and much cuddling... then a few more sips of pedialyte mix and off to bed. Mom is guessing it will be a long night. pretty much everything she eats now is coming up... she will need to eat only in sips. Everyone else in the family seems a little run down, even congested and light coughing.

June 7


Claire had a good day, ate well nice bath mid day and therapy with mom including about 40 minutes in her stander - she should be doing that twice a day. Claire threw up in the evening... twice. Once looked like about 8oz worth, and mom thought maybe she hadn't been digesting her food well since it wasn't sour, and her last feeding may have been 6 oz or so (it looked like more than one feeding). Mom fed her more before bed and she seemed okay with that.

June 6


Claire had a good day at her school and no real problems lately. Mom is pleased, but knows something is in the works.
Her sister stayed home in the morning as she appeared hotter than her temp of 99 - she runs a temp of about 97.9 typically, so that could be why she didn't feel well. Mom thought she could get better quickly or worse, so she better monitor her. Mom was feeling better this morning, but a morning home working and taking it easy wouldn't hurt anything. Claire's sister napped in the morning, and was much better by noon (it may have helped that she wasn't allowed to watch tv if she was sick, so she decided she didn't want to stay home anymore - and seemed much more perky to mom), so mom dropped her off at summer camp and went to work. Mom had a decongestant and a cup of green tea after lunch and was feeling well herself. In the evening, upon getting home, Claire's brother went straight to bed. Said he was tired, he'd been canoeing all day, that could be it, but he may have also gotten that 'exhaustion' thing mom had. He went to sleep and was hard to wake for dinner, but got up, showered, ate and went back to bed. whew.

June 5


Mom had a meeting in the afternoon, but was feeling feverish and overall exhausted, so she went home right afterwards, went to bed and curled up, hoping it is just a 24 hour thing (99.9 degrees under her arm). Claire's sister was complaining of a tummy ache, but had a good night.

June 3-4


Nice relaxing weekend. Got some plants for the garden and put them in. Had friends over for dinner on Sunday for hamburgers and hotdogs. Mostly getting kids outside to do yardwork, always a struggle. Claire was outside in the mornings, but inside much of the day due to the heat.

June 2


Claire fussed off and on during the night... not too sure what that was about, but she's stop as soon as mom's foot hit the floor... sigh.
It was a hectic morning this morning, but Claire really didn't notice. She had a very small breakfast, then a bath and off to the dr appt to have her hips checked out. Meanwhile, mom was getting her sister and brother ready for their camps and planning to drop off one of them across town, but decided to lower her stress level by opting to drop them off after Claire's dr appt, which they made on time.
The orthopedic dr said that Claire's scoliosis was only about 23%, and that it was mild... he also said that her hips, while most are at 35%, hers were nearly verticle coming out of the socket, but the joints were where they needed to be. At 3 years old, if they were going to come out (hips were going to dislocate), they likely would have done that by now, if they start to show problems, he would consider botox shots, which he wouldn't want to use on a child, but it would (only temporarily) relax the muscle holding the legs tightly together and allow her to spread her legs farther and stretch out those muscles. Amazingly, this is the child who will sit in her stroller of carseat with legs spread out and fall asleep like that... mom needs to take pix of that, it is a wonder she is having this problem with the tightened muscles. Overall, he said she looked great and there was no need for any consideration of surgeries, etc. They will continue to monitor the scoliosis and hips and she should go back in 6 months to be rechecked.
After he spoke with mom, and dad was off getting Claire's brother to camp, the dr went to look up Claire's condition once again to see about her hips and any problems with possible botox injections... he evidently had time to look over her trisomy a bit more thoroughly since, when he came back, he mentioned that she way off the charts for survival of T18. (Mom had mentioned that with Claire's initial diagnosis from the amnio, came the belief that she wouldn't live to term.) He told mom and dad that she was quite the miracle and she would definitly surprise them with all she can do. One more thing he mentioned to mom was a saying he reads every day about how you cannot change the direction of a river... you must let it continue to flow the way it will... like Claire, tho she will change, they cannot change her, but accept her and let her 'do her thing'. :o) It was a good morning. Mom took the girls to school/camp and dad was off to a meeting at Claire's brother's school. whew. Mom had to miss that one, it was just getting too late, and the grrls needed to be dropped off on the far side of town... she would never make it back in time.

June 1, 2006


Claire didn't sleep great last night, and while her dad was still up, he noticed she was congested and cleared her nose and put her back in bed.
Mom was up early and took Claire's brother to summer camp, then went to her dr appt to have her ear checked. The nurse said mom had the blood pressure of a 'juvenile'.... as in very low BP. Mom mentioned that she had no stress in her life (and the nurse didn't know mom well) and said, 'oh that's good!'. Mom chuckled. She and the doc had a good laugh over that one later.
Doc said her ear has a way to go to heal, but seems like it's going fine. Gave her an antib presc in case it flares up. Then mom headed in to work. Dad had Claire up, fed her and took her and her sister to school and camp.
In the evening, mom went to pick up Claire's brother from camp and head home to pick up around the house. Dad came home later with the girls and they got bathed for dinner. The family met friends for dinner and had a fun time.

May 31


Claire slept great and had PT today shortly after mom got her car from the shop. Her hips are somewhat improved and that made mom happy. Mom has been carrying Claire with Claire's legs strattled around mom's waist, rather than the usual cradle hold. Have them spread has helped stretch them, and Claire has pretty good trunk control that she is able to be held that way for a while before falling to the side. She sat up pretty well today with little or no assistance, but for only around 60 seconds... it was something mom was proud of tho.
Claire had an ortho appt to have her hips checked out, but after waiting nearly 2 + hours, dad had to go pick up big sis at camp and mom really wanted him to be with them for the appt. She asked how much longer and the nurse said there were still 4 people ahead of them (3pm appt, it was just after 5pm). The nurse kindly suggested rescheduleing, mom too the appt as dad's face turned red. The appt is for 8am, so she assured them they'd be first one's in at their appt time.
At home, everyone destressed and settled in. Dad made a big steak there was lemon key lime pie for dessert. yum.

May 30


First workday of the week, sure seems like Monday.
Mom was in early and working hard after dropping off Claire at her school and her sister at summer camp. In the evening, mom picked up the grrls and it was a long journey home. Mom was driving dad's big truck as her car is in the shop. It was finished on Friday, but it seems like such an ordeal to drop it off and pick it up. Dad asked them to change the oil too, so hopefully mom will get her car back tomorrow.

May 29


Claire slept very well all weekend! Mom woke up and found herself with stomach pains... ugh. She was better by mid-day, but cringed at the thought of driving 3+ hours like that. The family spent the morning packing and saying goodbye to everyone and then hit the road finishing up their beautiful weekend at the beach. :o)
At home they unpacked and Claire ate before she left, on the road, and once home... then again before bed. She's getting great at opening her mouth, closing her lips on the spoon, and then swallowing relatively quickly afterwards. All this caught mom off guard, because she doesn't want to put in more food, if there is food in there, but noticed that the food was gone and the mouth was open... and it was happening sooner. Mom was thinking maybe she needs to feed Claire more often, as she seems to be getting hungry, but then she likes that she's so hungry she eats much better, esp at the beginning of the meal, and eventually eats more and more with each feeding, so the length of time between each meal isn't too long.

    "me and my grandpa"

May 27-28


Gorgeous weekend at the beach. Claire wore her new bathing suits she'd gotten for her Birthday from her aunts. One had Nemo on it (lucky fin!) and the other was a 'tank-ini'... bikini with a tank top. She was adorable in each of them. She spent her mornings getting slathered up in baby sunscreen and hanging out with family on the beach after breakfast, then at lunch time, she went in for lunch and a nap, and by early evening was out again visiting with family and friends getting ready for more food and cuddling. The smiles were big! Mom noticed her energy level was very low when she was on the beach, but usually after she'd been there for a while. Between the bright sunlight and the increase in temp, she would eventually go to sleep, and mom was certain that Claire would lay there all day. Once Claire went to the cool darkish room for lunch, she was wide awake (from a sleepy nap state) and fussing for food. Mom thinks she pegged that pretty good. Claire ate very well all weekend. Threw up twice, not too sure why, but ate well enough that mom didn't worry about it too much.

May 26


Packing today and heading out to the beach for the Memorial Day weekend with family and friends... and lots of them. The kids really look forward to any weekend at the beach and love the sand and waves. Claire's sister is pretty much a pool person, tho she can enjoy either, and their dad is NOT a beach person by any means. Mom on the other hand could sit on the beach all day under an umbrella and just hang out all day... even if there were no one around to talk with, but there will certainly be plenty of visiting!
The family got to the hotel close to 3:30pm and the kids were in the pool extremely quickly. Mom just put her feet up and Grandma took Claire and fed her. Already looking like a relaxing weekend.

May 25


Claire slept great last night and mom woke her in the morning for food and meds. Claire was off to school and mom turned around and went off to Claire's big sister's school as they were having an end of year party, and mom is co-room mom.
After the party, mom and dad dropped off mom's car at the shop, it's a 1993 and having a few problems that mom needs to have looked at. Then, another school meeting and back to work. whew. Mom arrived mid-day and had plenty of loose ends to tie up this afternoon before heading out for a Brownie scout meeting at the mall. Dad meanwhile has a closing and is working to make it all go smoothly, as closings should.

May 24


Claire had a nice day, she was up for med and breakfast, then back to bed, then up again for lunch and bath and off to a photoshoot for Children's Home Society. Afterwards, she fell asleep on the way home, as mom's car overheated (maxed out into the red area) and mom had to roll down all the windows and crank up the heat (in 90+ degree weather). Poor Claire was a sweat bucket when they got home (only about 2-3 minutes later) but mom's car cooled down from that fiasco and they made it home safely. Dad picked up the kids and was off to show a home. Mom talked the kids into cleaning their rooms (at least a little -- baby steps) and then fixed a nice dinner. Dad came home late and everyone got caught up on the day before the kids went to bed. Claire was hanging out much of the day (when she wasn't sleeping) and eating well. She even drank 9oz of her bottle -- without much hesitation, she's starting to do much better with her liquids, esp with the thick-it in it, so she can manage it in her mouth better. Mom thinks that may be what is cutting down on her pneum's. It would be nice if it were that simple.

May 22


Claire was up somewhere around 12:30am, and fussing. Mom wasn't sure what the problem could be, as Claire had been sleeping so well for months, she didn't know where to begin. Mom opted to pick her up and rock her, but Claire got louder, so she gave her some mylacon and rocked walked around with her until she settled down. Mom put her back in her crib and was hoping Claire would settle down and go back to sleep. And she did. Mom realized how blessed she'd been these past few months with children who have been sleeping through the night (knock on wood!!).
Claire slept great until 4:30am. Mom and dad hear a noise... actually sounded like Claire's big sister jumping on her bed, not that that ever happens, and woke up to listen more. Mom realized it was Claire's little feet kicking and kicking and the crib going against the wall. Claire started fussing, perhaps because she wanted someone to play with, but mom couldn't be too sure Claire didn't have a foot caught between the crib slats, so she checked in on her. Met with a big smile, mom told Claire, who was laying on her back and ready for a party to begin, that it was much too early for playing and she needed to go back to sleep. Mom rolled Claire back to her tummy and they both went back to sleep. Mom also realized her ceiling fan was on and turned that off, Claire likes to be warm when she sleeps, otherwise, it's 'party central in Claire's room'. Kinda like that that onsie mom saw once, 'Party, my crib, 3am'... Claire's motto tonight!
Mom woke Claire at 7am to get up and feed her. Claire ate and ate... then mom cleaned her up and went to finish getting ready for work and noticed Claire about to eat off her hand. She fed her more and more and was amazed at how much she ate. Claire must have eaten close to 10oz this morning. Mom is thinking growth spurt. But then, mom did opt for rice/bananas over barley lately, and Claire loves that stuff.
Mom has been feeling better too. Still has her right ear 'blocked' and cannot hear well out of it, but it seems like it is trying to open up, so she's hopeful. Her energy level has come back and she's very happy about that.

May 21


Claire slept great and was up for her bath and church in the morning. Dad held her for most of mass and mentioned she was getting heavier. Mom said he was just getting weaker in his old age. ;O)
After church, mom took the kids to a pool party for big sisters brownie's scouts end-of-year party. It was a lot of fun, but not too much fun for big brother... middle schoolers and brownie scouts don't really mix well. He liked the food tho, and it helped that he had a book he was in the middle of, so he sat in the corner for much of the time reading.
After the party and all the food, mom had the kids out in the yard working. Little sister was helping mom move some plants and big brother was shoveling some sand... good hard work.. hehehe... anyway, Claire was inside, mom thought she was sleeping, but evidently, she was playing in her crib. After about 15 minutes, mom checked on her, and she'd completely moved around, head to food and repositioned herself. She's a silly peanut. Dad had been working all day, and when he got home, everyone relaxed and the kids got to bed a little late. Not wanting to be their teachers tomorrow... but it is the last week of school at least.

May 20


Claire slept well. Today was a lazy day. Mom got a little yardworkd done during Claire's nap, and dad worked much of the day. The kids hung out in their rooms enjoying some downtime from school. Claire ate pretty well.
In the evening, the family went over to friends' home for dinner and had a wonderful evening. They had to get home by 10pm for Claire's evening meds, so the night was cut a little short... Claire's family often overstays their welcome anyway, so was probably a good thing. ;o)

May 19


Claire has been taking off the barley and back on rice/banana cereal. Mom was hoping that the barley would help with BMs, tho she's been having them pretty regularly, just thought it would help even more. Claire's eating became minimal, and mom thinks it is because of the barley flavor. So mom switched back to rice and Claire is eating well again.

May 17


Claire slept great and had a busy day, starting with a visit to the dentist at 8am. Mom's appt, but the dentist gave Claire a good look over. Noticed the crowding of her teeth,many are in sideways because of Claire's small jaw and so many teeth to fit in there. She comes from a line of small jaw/mouth and big teeth people, so to be born with a gene that dictates an even smaller jaw, well, crowding was evident!
The dentist suggested setting up an appt for her to look at a cavity she has and seeing if she could get Claire still enough to fill it with tooth-colored fill. Mom thinks that will be very interesting, and will work on sleep deprivation to see if maybe she can get Claire to sleep through it all. The appt isn't until June.

May 16


Claire slept great and mom had to wake her in the morning. She was very hungry, so mom fed her and once she got to school, she ate even more in her high chaire. Mom is so proud, today she took her camera, so she has pix of Claire sitting up like a big grrl! She'll post them soon.


May 15


Claire slept great and mom was very pleased when she took her to school and saw a high chair (actually pretty low to the ground chaire) waiting for Claire to use! She was going to sit up like a big grrl now! She'd been doing so great in her bumbo seat, it was only a few months ago that, after she sat a while, she would lean over to one side out of exhaustion. Now she sits there for much much longer, so why not a high chaire!
She ate well in afterschool, 7 oz, and then once home, was hungry, mom fed her... then only a couple hours later, and just before bed, she got her meds and she was hungry again. Mom has noticed lately that if she gets her meds AFTER she eats, she eats much better. She thinks it is because the meds are so sweet they kinda spoil the flavor of dinner. The trade off is that if she is full, she doesn't want her meds. AND if she has recently eaten, the meds make her saliva kinda 'phlem up'... her saliva gets very thick and hard for her to breathe through her mouth. So, if mom has the luxury of waiting 30 min to an hour after Claire eats to give her meds, that is the best choice. Meds are the first priority tho... usually.

May 14


Mom had a banner mother's day. She was served french toast, a mom favorite, and lavished with gifts. Claire gave mom a flower and a big laminated card she made at school. All the kids made cards that were very personalized and Claire's sister made a beautiful handprint, mom will cherish it always.
Mom also got a visit from an dear friend who she hadn't seen in quite a few years. She had (coincidentally) done an OT evaluation on Claire last week at her school. Evidently, someone at the school told her about Claire's website. She came over and gave mom a rose and a card with a letter and then said some wonderfully nice things to mom and they got to catch up on stuff. It was a wonderful visit. It really meant so very much to mom to see her and know that she cares. Mom felt bad she'd lost touch all these years. With so much going on, it is still no excuse to not keep in touch with friends.

May 13


Claire had a nice day, hanging out with mom while mom was still trying to catch up on rest. Dad spent much of the day at an open house while mom entertained Claire and her older siblings entertained themselves.

May 12


Dad had Claire up early and off to school after the other kids had been dropped off. Good dad! Mom was still congested and a bit dizzy (dizzier than usual anyway - not sure if it was because her ear is still very 'clogged' or from the decongestants. Mom's sinuses are stil messing with her, but hopefully with time, they will dry up. At least she has all weekend to get better.
Dad picked Claire up early today as he had a lot of running around to do late in the day. She got home and mom propped her up on the bed and Claire fell asleep... not even acknowledging mom. Mom had to call dad and ask what kind of brainwashing he's been doing on her little girl that she didn't get excited about seeing her mom. She was probably very exhausted from daycare.

May 11


Claire is doing much better and even going to school today. Her eating is up and she back to being her ol' fun self again. Mom on the other hand is down.
She was up at 1am, just before a line of storms came through town. Her ear was hurting so much she couldn't sleep. She took a decongestant at 1am, and another at 3am, and no help. She surfed the Internet to see if she could learn more. She tried everything she could think of and stuff she read- anthing she could do, but nothing helped the pain go away.
By 8am, she hadn't gone to sleep and called the dr. At 10am, the nurse practitioner saw her and said it was sinusitus, but didn't see much more than a little fluid behind the eardrum. Mom couldn't believe that was all. Got a prescription for antib's and pain-killers. Mom was besider herself with the immense pain, and took her antib's and 1/2 tablet of painkiller. Then around 2am, her ear popped. It wasn't pretty, but she put a cotton ball in her ear (sparing details) and went back to bed. She had a low-grade fever. Took more decongestants, drank more and more water, called the dr's office and dad called his sister-in-law who is also a nurse and gave them comforting news. Evidently, the eardrum burst, but it will fix itself, so that was good news... just had to be patient. One good thing was that within about 30 minutes, about 80% of the pain was gone. Mom was finally able to get some sleep. The kids were at school and dad was out running errands and working.