Claire's Journal -- 28th Month
July 10
 

Claire slept well last night and was up around 5am. She drank 4oz and headed back to bed, not caring about any wind or rain outside her bedroom window. Mom will have to wake her to feed her later today, as the little peanut really loves her new crib.
Mom received an email this morning from a friend she'd been corresponding with, a mom with a T18 child. Her baby, Mattie, passed away this morning at 5am. sad. Please keep this family in your prayers. Mattie was also full T18 and nearly 8 months old.
The cable is out this morning, so mom is on dialup (after mom answers all her mail and updates Claire's journal, then she'll tell dad - hehehe). Actually, dad is too good for dialup - hehehe. The cable guys know that its out, so it will be a matter of time.
Some say the storm has jumped a little to the east (that would be towards Claire's house) but likely to hit to the west - the original forecast. Fingers crossed... at a category 4 hurricane, Dennis is a really bad storm and mom would like it to just turn around and go back into the Atlantic into some colder water. A few years ago, that's what all hurricanes did - just headed up the east coast and off to the cold waters of the Atlantic, and everyone was thankful!
BTW, if you are trying to reach the family by phone and can't, try calling dad's cell phone.
Mom better go get baby Claire up for some food... she should be pretty hungry about now. Mom also needs to get the crib bumpers up for Claire's crib, as every now and then a pudgy little "Claire leg" comes through the rails and Princess Claire isn't too pleased when that happens.

July 9
 

Claire slept well last night and woke up to the celebration of her sister's birthday.
She ate about 4oz as mom held her much of the morning and they played, and then had more bananas and off to her nap. The weather has been nice all day up until about 2pm when a squall hit from Hurricane Dennis. The hurricane is expected to hit the coast tomorrow, so the weather should slowly deteriorate before then, but mom thinks it is going much more to the west than what is predicted... maybe just wishful thinking too. Dad is tearing up one of the walls in the kitchen and trying to 'save' the pine panelling which is beautiful. Since cabinets will soon line the wall, the panelling will be safer taken down and stored for another room at a later date.

July 8
 

Claire was up at 5am, hungry. Mom fed her and layed back down just long enough to get a little shut-eye before the alarm went off. Mom got Claire ready for daycare and took her in. Once again, the ladies were so excited when they saw Claire and today mom showed them some of Claire's exercises to strengthen her legs and help her with her sitting.
Mom was off to work shortly afterwards and left only briefly at lunch to do a few errands and grab lunch. After work, mom went to get Claire and had to make three trips to the car, that last one carrying Claire. The first trip was with the boppy and the bumbo seats, the second was the kimba chair (only the chair would fit, so mom had to leave the base). Claire loves it at her new daycare. They are trying different things with her constantly and in the afternoon many of the 'crawlers' have left, so they take her over to that room (under 1 year and mobile) and the ladies over there love having her. When mom went to get her, she was in the crawler room and wrapped up in a blanket with her little sweater on. Evidently, she was cold, and mom was a little surprised as Claire doesn't usually get cold, she is usally sweating.
Dad had Claire's sibs all day as he ran errands and got work done, once they arrived home, everyone relaxed a bit before ordering takeout for dinner... a perfect Friday night meal. Claire had her dinner and was in bed by 9:30 after her meds.
The hurricane in the gulf is suppose to hit the coast within 200 miles of Claire's house, but it is still a few days away.

July 7
 

Claire was up about 3am and drank about 3-4 oz of shake, then back to bed and back to sleep.
She was up early after her mom spent most of the morning scurring around and getting ready for Claire's big day at her new daycare. Mom dropped her off and handed in her paperwork and fees, and went over some of Claire's routine with one of the teachers. Claire seemed to fit in and be happy and mom, of course, took a few pix and got off to work.
She had a terrific day at daycare and mom is very pleased with the attention Claire gets.
Claire had a good night, ate and went to bed at a reasonable time.

July 6
 

Claire had her mommy all day, they went to physical therapy and then occupational therapy. Claire did very well and her therapists both thought she was making great improvements, like trying to do situps from an incline position. Neat.

July 5
 

The family spent much of the day traveling back home from Grandma's house. It was an exhaustingly long weekend full of fun! In the evening, everyone took it easy. Claire was happy to be home and in her own big bed/crib.

July 4
 

Happy 4th of July everyone!
The family was up fairly early to get to the beach early and avoid the crowds and the heat. Claire's uncle showed up with some fishing poles so grandpa fished, mom and the kids worked on a sandcastle, but in the end decided on an actual-size sea turtle, he was really cute. Claire spent her time at the beach in her favorite place, Grandma's arms under a big beach umbrella. Everyone had a good time and after a couple hours when home and went swimming. They were in the pool until after 2pm when dad came home from visiting friends down south. Mom's hands were shriveled by that time anyway. Claire's uncle came to get Claire's cousins and take them back home. The had a lot of fun and were sad they wouldn't see the fireworks with everyone, but knew they needed to get on the road soon.
In the evening, the family went to Claire's uncle's home (who lives by the beach) and everyone gathered for a celebration of Independence, and a celebration of Claire's sister's birthday (next week). Mom made a giant chocolate chip cookie for her birthday cake, and Claire's aunts all brought desserts while her aunt and uncle bought very large subs for dinner. Later in the evening everyone climbed onto the roof (flat roof with rails) to watch all the fireworks around in the different cities along the river. Always a good time! Claire was awake through it all, but downstairs with daddy watching the Red Sox play on tv. They were happy there, so mom went upstairs with everyone else.
The family got home late and went to bed expecting to leave fairly early in the morning to get back home.

July 3
 

Claire family was up early for church. She was very good in church and at home she ate and took a nap. Meanwhile, the cousins and sibs spent time swimming in the pool and having a fun time bonding with each other.

July 1
 

Claire's mom and dad's anniversary(16th) is today, but they likely won't get to celebrate it as they are packing and going to grandma's house for the weekend. On the way, they will stop and pick up daddy's neices and have them all weekend. Mom and dad will plan something in the coming weeks... and maybe next year plan a little better. The family left after work and arrived fairly late in the evening. Mom changed Claire's diaper and got her to bed while dad set up her play pen.

June 30
 

Claire had a good night and slept through.
Mom heard her in her crib around 7am, talking (in her own language of course -- mom think's it's Japanese)... and playing. When mom went to get her, she was in a position perpendicular to the one mom left her in last night. Better get the bumper pads out for the crib!.. cause little Claire is bouncin' around in there.
Mom got the kids ready and off to school. Dad had an early morning closing, business seems good these days (fingers crossed it holds up) and dad is busy busy busy.
Tomorrow is Claire's last day at her daycare. It will be sad, but it will be for the best, as her caregiver could use the break, and while Claire isn't exactly a handful, she has her moments.

June 29
16lbs, 2oz
 

Claire was up with her daddy in the middle of the night. He was up anyway, and is great about getting her when she cries (if he's still up).
Mom got a pretty good night's sleep. Up in the morning to get Claire to her 9am fitting. Mom took Dad's car so everything would fit. She was taking Claire's kimba stroller so Claire could be fitted one last time, and picking up the base that the seating will fit into also, so Claire can sit closer to the dinner table with everyone. It will be nice for her to sit with the family at dinner time (typically, she's in her stroller or swing sitting with the family, near the table, but not at the table unless mom is holding her). She also got a seatbelt for her stroller, so when she's reclined, she shouldn't need the vest and will be cooler this summer (the vest is for positioning and it can be very hot). The guys at the wheelchair place also worked on better head support, but in the end, the one that the chair came with seemed to work best for Claire afterall.
After the fitting, mom and Claire rushed over to her therapy. She had physical therapy and actually did a sit up with very very little help... after she did it, she gave her therapist the biggest grin as any pixie would do, and mom and the therapist told Claire she'd been holding out on them!
Then she went to her occupational therapy, and the therapist mentioned that brushing her teeth and doing stuff like that in Claire's mouth before feeding her could help her eat better. So mom will be trying that (tho not using toothpaste as everyone knows toothpaste before eating makes everything taste yucky).
After the therapies, mom and Claire had just enough time to eat lunch, get meds and get mom a light jacket as the offices were very cold and outside was very humid. Then off to her well-baby check up!
"mad baby!"At her checkup, Claire weighed in at a whopping 16lbs, 2oz!! Mom was proud and told Claire's ped that she'd been adding olive oil, he thought that was a good idea and mentioned he was taking fish oil himself. Claire had a really good visit, he was happy with what he saw. Mom asked him to look in Claire's ears to see if they were more opened, and he did. He said he could actually see down her canal now, but still couldn't see the ear drum... but progress is progress, and perhaps in time, she will have all her hearing. Mom agreed with him when he said the hearing tests not only test hearing, but are based on the brain too, and if her brain isn't where it should be, the results could be skewed on that alone. Perhaps why mom never really felt the tests were conclusive.
In the evening, mom was pretty tired and got in a 10 minute nap. The kids were bathed, and it was pizza night, and dad brought home dinner. Mom insisted on having something besides pizza, as she's been having it every other night this week... and more pizza planned for a luncheon at work tomorrow. He brought her some stuffed shells (yum!). Claire finished a bottle of pedialyte that she'd been working on throughout the day, and then 3oz of shake and meds and off to bed. She was a tired little baire and went right to bed.

   
Claire holding her head up at therapy   Wow!  That is so cool!   If I get my hands, I'll do anything for you mom!
June 28
 

Happy girl getting ready to GO!Claire had a good night and slept through.
Mom woke Claire up early this morning. Claire has an interview with a church daycare. Since she is two, but small, they would consider putting her in the one-year room, but they are mobile and she isn't, so she could be put in a room with even smaller babies. The jury is out on that one - basically because of lack of openings for new kids. The woman mom really wanted to meet wasn't in, so maybe she will hear from her today and they can see if the daycare will meet Claire's needs, and Claire will meet theirs. All the women were very sweet and the family enjoyed the visit. Life is good.
After the interview mom took the kids to camp, Claire to daycare and then off to work.
Claire had a good day at daycare and was called back for a second interview in the afternoon. Mom was excited for Claire. Dad met them and they met with the director and she said she really wanted to make this work for Claire. They talked at length about Claire's needs. She would be going to therapy and of course need special seating. The director mentioned they could do some of the simple therapies that mom was already doing at home and mom would teach them those. It is all so sudden, but exciting for Claire. They were given the forms and a list of things to bring for Claire's first day next week. Mom got Claire back to daycare and herself back to work... and she's tickled that things worked out so well... OH the power of prayer!! :o)

   
Big Grrl in her crib now!       Sweet baby!!
June 27
 

Claire had a terrific night and slept straight through in her crib in her own room. Mom is so proud, Claire's getting to be such a big girl! Mom woke her this morning and Claire's big brother played with her for a while (when he should have been getting ready for camp) and got many smiles from Claire this morning.
Claire threw up twice today at daycare and her caregiver looked a bit exhausted. After filling mom in on Claire's day, she mentioned that she wasn't going to be watching kids for much longer. Mom asked her about a specific day and she didn't want to say, so mom said it for her, asap. She's been watching Claire for 2 years, and Claire is her 'oldest' customer, but mom is sure Claire isn't the reason she is moving on with her life. Her fiance has two adorable, but small, children, and in the evening she often cares for them, so once her daycare kids leave, she has other kids to attend to, and it seems to be wearing on her. She is a very lovely woman and mom and Claire will both miss her very much, but will intend to keep in touch with her. One more chapter in Claire's life about to close in order to start a new one.
Mom spoke with the Children's Home Society counselor who has quickly become a good friend of the family and amazingly she told mom about a church very close to Claire's home who may have an opening and the director has many many years experience with 'special needs' kids in the county school system. Mom has an appt tomorrow to go look over the new place and really hope it will fill the new void and will be just what God ordered for Claire. It's a wonder how things change and other hope forms soon afterwards. Mom will be saying many prayers that it will all work out for Claire and the rest of the family -- it is so sudden, and hopefully will somehow be for the best, God knows what is best for Claire and all we can do is have faith.
Claire had a good night of eating and then off to bed. She was letting out a few cries randomly, but not enough that she would be fussing each time mom went into her room (Claire would be sleeping), so mom kept an ear open and eventually Claire settled down. Everyone was in bed at a reasonable time tonight.

June 26
 

Claire was up around 3am, and fussing... first softly, then louder until mom was certain she wanted more than just companionship... mom first went in, covered her up and patted her back... and Claire settled down until mom got back to bed, then started fussing again, so mom got a bottle ready and offered it to Claire thinking she would have her usual two large guzzles and have no more, but mom was wrong this time. The little peanut was hungry and drank all 4oz in under 10 minutes (approx) and then mom put her back to bed and she was most content to sleep until morning. She seems to be well adjusted to being in her crib.
Dad was up with Claire in the morning and gave her a bottle... after guzzling the first 4oz (dad wasn't used to seeing that happen and was most impressed) he offered her the rest of the 8oz and finished all but one oz of that and then went to sleep again... that drinking and full tummy can waire a baire out!
Company came by in the morning, first dad's friend and his girlfriend, then another friend of dad's with his wife who hadn't met Claire, and barely remembered Claire's brother and sister. It was a fun reunion!
Afterwards, the family was off to Claire's uncle's pool party. Her uncle dipped her toes in the pool and she seemed to like it, or at least she didn't cry about it. He put a little cool water on her face too. Claire has a bit of a heat rash on her face again (tis the season). Claire's aunt held her much of the time, and a friend held her briefly too, mom got a little break and bragged on all that Claire has been doing lately, like working on her standing, and graduating from hospice.
Later in the evening, the family hung out for a bit with Claire's uncle, aunt and cousin and ordered bbq, but with it being so bright out so late, the time went quickly and the family had to rush home to get the kids to bed (in the daylight, but close to 9pm).
Claire fell asleep after her meds (she'd been eating much at her uncle's home all evening) she went right to her crib soon after they were home... before 10pm.

June 25
 

Claire's mom was busy this morning.
After her cup of coffee, she was determined to clean Claire's room and get the crib up today. After only a few hours, the room was ready, furniture moved around and the crib put together. It was the same crib that Claire's brother and sister had, and the same one her cousins had used too. It matches the other furniture really well, and mom and dad decided a new matress was in order for Claire. Claire still fit, tho barely, in her bassinet, but she should have probably been moved to the crib months ago, but it wasn't something that could be done too quickly as mom and dad disagreed on what to do with the furniture in the room already. Until that was resolved, mom wasn't ready to rock that boat... but finally the day has come that all of Claire's belonging can go to one room.. once again... like when she was first born and the bassinet was in her room, the nursery.
It is so nice to have an organized room and everything in its place, but of course, a few things are still out of place. Once the room was together, sheets on the crib and a shirt that mom had worn was layed down (gotta get that mom's room smell in there), mom went upstairs and locked herself in Claire's sister's room with a big black yard bag. It was time for toys to go and mom knew just who to give them to, Claire's caregiver has a soon-to-be step-daughter who is younger than Claire's sister and would love to have many of the toys. The bag didn't quite get full before it was time for dinner and giving up on the room temporarily, but mom will be back to finish the job soon.
Claire had a nice evening, full of smiles and just an all-round great kid.

June 23
 

Claire was up around 3am and looking for food. She guzzled her shake for about 10 seconds, then pushed it away and didn't want any more, so mom put her back to bed... she was restless for a while, but eventually went back to sleep, which was more than mom could say. She put the bottle back, checked on the kids, and still layed in bed unable to sleep, but eventually dozed off.
In the morning, mom just wanted sleep, but was up and getting kids ready, Claire ready and herself ready for work. Eventually, everyone was out the door and Claire was sent in with a jar of peaches/bananas and another jar of sweetpotatoes/chicken (like she had last night). Her caregiver was very happy for Claire to have a variety of food.
Mom has mixed feelings... tho Claire is two, she's only 15lbs... so does mom feed her like a 2yo, or feed her like a 15lb year old... what is going on inside that little peanut, and how would mom know if she is giving her too 'advance' of a food, or not advanced enough... so mom always thought it would be good to err on the side of not advanced, so that is pretty much why Claire hasn't had too much variety (and the fact that bananas and cereal are so hi-cal, and mom wanted whatever Claire ate to be hi-cal).

June 22
 

Claire had a rough night, dad was up with her and mom fixed a bottle an gave it to her, she drank about an oz and then went back to sleep. She has a big swollen gum that a tooth is just so ready to come through, but hasn't... as if the gum is just covering a tooth that has already 'come in'. Poor little thing. She wasn't too happy today, even in PT she was fussing, and mom had to remind the therapist that it wasn't her, it was Claire's tooth.
OT was cancelled, mom didn't find out until PT appt was nearing the end, no one called to say there wasn't OT today and mom could have made other plans, but evidently, policy at rehab has changed and no calls of cancellations when there is an appt scheduled prior to the cancelled appt... go figure.
Claire's brother is off this morning with dad to get braces put on. Should be a big experience for him.
Claire ate really well first thing, mom had some work to do and Claire wasn't sleeping, so mom kept feeding her and feeding her staring with 3oz of cereal (spoon) then followed up with 5oz of shake, then onto another 2oz. After therapy, Claire slept and slept and woke up with a big hunger, so mom popped open a jar of sweet potatoes/chicken (stage two, so it is well pureed) with some banana rice cereal mixed in for easier spoon feeding. Claire slurped it down... literally, at one point, mom put the spoon in her mouth and she slurped the food off the spoon) It was her first taste of meat, and she loved it.... She still seemed hungry, so mom got out more shake. After a pretty good day of eating, the teeth were really bothering Claire and gas too (you don't want to know how mom knew she had bad gas) wondering if it was from the chicken and sp. Mom gave her some mylacon for gas early in the evening and followed it up with generic children's tylenol. She seemed to respond pretty well and later had her meds and food and off to bed. She was still not settled in, but not fussing, so mom got some sleep.

   
In her Bumbo Seat just after DinnerTaking the chaire for a test drive!
June 21
 

Claire had a terrific night and slept straight through. Mom was very pleased.
They were up early to get Claire and kids ready for their days. Kids off to daycamp and Claire off to daycare.

June 20
 

Claire had a terrific night and was up once. Dad got up to get her while mom got up to get a bottle. She drank about 2oz and then went back to sleep.... good grrl!
She was up early for daycare and had a good day, tho drinking only about 7oz, and not eating much before going. Friends came over tonight and everyone ate pizza (yes, it isn't pizza night, but we do love pizza around here). In the evening she had some nice cereal and then about 6oz of shake and then off to bed... she was a tired baire by the end of the day.

June 19
 

Claire's daddy - doing what he loves - Happy Father's Day!Happy Father's day to all the dads out there!!
Claire wanted to spend some quality, one-on-one time with her daddy, so she had him up until about 2am. Poor dad... doing his fatherly duty so mom could sleep.
Mom tried to get all the kids out to the beach as early as possible so dad could sleep, but he was up around 9am and looking for some breakfast which he enjoyed in some quietness with friends as mom had the kids out on the shore by then.
Claire had a nice day, hanging out under the umbrella, enjoying the massage as mom put sunscreen on her. It was really bright for the Peanut, but she was most comfortable. Mom stripped her down and dunked her bunnies in the cool water, and Claire made sure mom knew NOT to do that ever again!! Mom quickly replaced the diaper and fed Claire until it was time for another nap, and Claire hung out snoozin' under the beach umbrella until time for lunch.Island Girl
The family enjoyed a nice father's day lunch and then a quick packing before heading back home to start another week. Claire did really well on the hour and 1/2 drive back home. In the evening, mom couldn't feed her enough. Dad thought she was going to 'blow', but she didn't as mom made sure to give her a break between each 4oz... Claire had a good day of eating, probably from all that fresh aire! She missed her bath, so she went to bed in sunscreen and saltwater, but she was much too tired to go through all that.

   
soaking up some fresh air !Ahhh... what should I do next... Baby shark ... little like ClaireLittle ray
June 18
 

I'm cool!!  too cool for the beach!!Claire had a terrific night and slept straight through. Mom even slept in and got up to make a pot of coffee. It was a gorgeous morning on the Island and mom was in a big hurry to get the kids out to the beach before it got too hot.
Dad bought a couple fishing poles and the girls caught some neat fish, on bonefish, one baby shark (about 8" long) and one sting-ray. The kids enjoying seeing the different fish, and later in the day a storm came up, and everyone even got a glimpse this is the life!of a funnel could (way up in the air)... a lot of firsts today! During the storm, the kids were entertained with boardgames and snacks and when got my toes in the sand!things cleared up it was cooler. The umbrellas were set back up and beach chairs wiped off and mom even had to put on a t-shirt as the breeze was nice and cool. Claire was loving the temp and mom even had to put a t-shirt over her legs to keep her from getting too cool.
Dinner was a yummy lasagna and everyone ate well but were exhausted from the day. Mom went to bed when Claire did, just after 10:30pm... Claire's big sister also was in bed early - closer to 9pm. Around midnight, Claire's daddy was still up, and Claire wanted to spend some time with him, so she got up too... fussing. She was battling teeth and gas during the evenings. No signs of seizures (yeah).

June 17
 

Everyone is excited today about the big trip to the beach this weekend. Going to an island in the Gulf with friends who are watching 3 kids and have one of their own... so that will be 7 kids total and 4 adults. Planning a big Father's Day BBQ and lots of beach time!
Mom took off work early to go pack and try to beat the traffic as there will be a Saltwater fishing tournament on the way to the island.
Everyone arrived in the early evening and enjoyed the views and ate hotdogs. Looks like a fun time ahead! Claire was caught up in the excitement and full of big smiles. She was eating well and had no complaints (except mom forgot her bumbo seat -- but that just means she will be held more! so she was over it quickly)

June 16   Claire slept through the night, as her last few days had pretty much wore her out. She didn't have noticable seizures today and everyone was getting ready for a weekend at the beach... with Claire's seizures seemingly under control, it should be a nice weekend.
June 15   Thinking they would taper off (as they did start to get farther apart after a while)... and thinking next time the bloodwork would be done at the first seizure... By about 2:30am, mom and dad had both been up, she was having seizures off and on - sometimes - tho rarely - 5 minutes apart - sometimes 45 minutes apart - but typically somewhere in between), then gagging and typically throwing up, so mom would feed her a little more so she would be digesting before the next one. Since hospice was out of the equation, and mom didn't want to take her to ER (they would just take levels and ultimately just increase her meds) mom opted to just give her a little more med tonight, which shouldn't change the levels by morning, and go get the levels taken first thing. There was no rest for the weary tonight.
Mom took Claire early for levels and they were low, but didn't get a call from the dr until after 2pm, after Claire's next meds were given. As suspected, dr said to increase the dosage by .1 or .2mls... and mom just gave her that much more once she got the word.
Mom cancelled PT and OT today, as she was still having seizures, but tapering off slowly.
In the evening, she may have had two more of them... just gotta wait for the meds to kick in.
June 14
 

Claire was up at 4am. Mom figured she's just bitten her hand again and it hurt, but then she started continuously crying, so mom fixed a bottle... when mom got back to the room, Claire had fallen asleep... or so it appeared that way, but mom was onto her and her ways. Mom picked Claire up and when Claire saw the bottle her eyes opened and when mom put it in her mouth, she drank like mom hadn't seen her drink... in 6 minutes, Claire finished her 3oz. Mom layed her back in her bed and Claire slept through the rest of the morning.
Mom checked on her this morning and she was pushing herself up on one arm, like trying to roll over. Mom picked her up and gave her meds and mom went into the shower. When she got out, Claire had fallen asleep. Mom fed her a couple ounces... about as much as she could get the Peanut to eat before she went into such a hard sleep that she didn't even wake up when mom put her in her carseat... but she was breathing fine, so mom decided she was just really exhausted and let her sleep.
Claire had another 2 seizures at daycare, and by that time, it was too late to go get the paperwork from the dr's office... Claire was put on O2 through her canulla and mom decided to take her for bloodwork tomorrow morning. Mom had gotten a new bottle of med, and evidently that wasn't the problem this time, and kicked up her eating, so that wasn't it either. In the late evening, Claire started having more seizures. Mom was at a loss.

June 13
 

Claire fussed part of the night, but it was likely because she bit her hand. It would be a loud cry, then nothing, and checking on her she appeared to be sleeping, so probably biting it in her sleep.
In the morning, Claire was off to daycare.
Dad went home early from work as he was feeling run down and ended up sleeping for about 3 hours - off and on, while Claire's big sister also slept (and was in a great mood all evening).
When mom picked her up, her caregiver said Claire had a seizure, so mom called the drs office to get levels taken to check her medicine levels in her blood. They had would have paperwork ready tomorrow for bloodwork.
In the evening, Claire was awake and happy and eating really well. She pretty much wanted a bottle in her mouth all night and was drinking it. At one point, mom decided to just entertain her and try to get her mind off the bottle. She'd eaten well enough and mom didn't want to see the food again, esp since Claire had been known to give us all an evening show... of food.
Claire was in bed before 9:30pm and so was mom and dad.

June 12
 

Claire had a good day, tho not eating great, still holding her own. Mom noticed 2 seizures late in the day and got a little concerned. She felt like she finally got her meds in order and wondered if Claire was getting enough fluids with all her shakes and cereal, so mom gave Claire a lot of pedialyte and Claire slurped it down. In the evening, mom kicked up Claire's feeding time a notch to be sure she was so full she'd just pass out (before throwing up that is) and she did.

June 11
27 months
 

Today was a lazy day with a tropical storm passing to our west. The sun was in and out much of the day with the wind kicking up and then looking like a beautiful spring day. Surely it was true that if at any given moment you didn't like the weather today, just wait 2 minutes and it will change. Still a hot and muggy day for the most part, but who knew as everyone was inside playing. Mom and Claire worked on Claire's PT exercises and holding up her head in her Bumbo seat. Overall, a most relaxing day. Dad was missing for much of the day as he went to the store for a sign for some rental property and then to a warehouse store for more shopping meeting a buddy of his... Eventually, they came home and fixed dinner, a most delicious meal, during which Claire threw up and disturbed dad's friend... everyone else just cleaned her up and went back to eating. Later card games came out and much fun was had as mom's luck was running high. Claire was in bed by 10pm, her sibs got to enjoy a night of staying up late, but were in bed shortly afterwards.