Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 60
March 10   Claire's birthday is tomorrow... she will be 5 years old!!! The family is so excited!!!
The party will be this weekend... mom and dad are scurrying to get the invites out, so please RSVP if you would like to come to the party. Claire asks that donations be made to her school, instead of gifts. Thanks everyone!
Friends came by to drop of a gift for Claire. It is a hip hop musical thingy... she loves the sounds and lights when they go off. She was happy with her new toy.
    swinging         swinging
March 9  

Claire had a nice warm bath and got all prettied up for church... then fell alseep during mass... she went home and napped much of the afternoon while her big sister sold cookies in front of the grocery store and dad did some real estate type work. Mom worked on getting dad's MS Outlook to print labels (ended up going through Excel, then Word) but wanted it as easy as possible for dad to be able to do it by himself in the future.. that was the part that took the longest.
In the evening, Claire had more freshly mashed bananas in her cereal and played inside. Mom thought it was a bit too cold to be outside in the shade... there will be better days ahead for that. Claire went right to sleep in the evening in her crib... sweet girl.

    fun fun fun  
March 8   Mom had a hair appt this morning and Claire was invited to come along as the hairdresser said she would cut Claire's too! She did a great job shaping up those curls and aside from it being a little shorter, she looks pretty much like the same Baire. She fell asleep in her chaire in the evening... seems to be a comfortable place these days, and mom gave her her med and put her down for the night. She was up in the middle of the night, so mom fed her 1/2 meal to get her through until her breakfast.
March 7   Mom was awakened at 5am with the sound of thunder... while she would have liked to have gone back to sleep, but instead, she got up and turned off the computers and then went back to bed. Not much luck sleeping after that knowing that her alarm would be going off soon, and Claire was making some fun, but quiet noises... the thunder may have awakened her too.
Claire got to sleep in after that, for today she had an appt. Her immunizations. Dad took her and told mom she did great. Not a cry at all as the nurses were waiting and waiting for one. She just flinched and then it was done. What a neat kid!
Dad took her to school afterwards and met mom for lunch. It was nice for them to spend time together... but didn't last long as they had to get back to work and it looked like it could rain outside at any moment.
    What the heck is that??!!
March 6   Snoozin again... won't sleep in my crib tho!Claire had a fun day. Rains are expected to hit tonight, so after school, mom and big sis took Claire out to the swing set... with 3 swings, Claire got a couple nice pushes then mom and big sis took their swings and had a grand time. The grrls are really enjoying the new toy. Later, the rains surely came and they had to rush inside for dinner.
    Playing with beadsHey mom!
March 5   Claire had a nice day, hangin with the mom. She didn't want to sleep, must be all the excitement of mom and the anticipation of therapy today. She did great at therapy and finally mom thinks it may have worn her out cause she was next to sleeping on the way home. She finally gave in to her exhaustion and fell asleep when mom put her in her crib after therapy. Dad went to play ball tonight -- two different groups of buds-- and Claire was up until after midnight. Dad usually takes that shift, but he was still out enjoying a beer with his buds, so it was on mom's watch and she should well be exhausted tomorrow.
March 4   Expecting severe storms today, so mom and Claire headed out a bit earlier to avoid the rain. Mom stopped for coffee, yum. About 30 minutes after she arrived at work, the skies let open and out poured lots of rain.
Claire had a nice day at school.
March 3   Claire had a nice day... all smiles on her way to school. She seemed to eat well at school. Mom worked late and when she picked up Claire, the Peanut was fast asleep in her chaire. The teacher said she'd been sleeping since 3:30pm, so mom knew she hadn't eaten in a few hours. On the way home, Claire woke up and was a happy camper. At home, she hung out in her chaire and was kicking and giddy. She ate dinner and had her bath, mom wanted to feed her more afterwards, but Claire tightened her lips and mom knew she was full and ready for bed. Brushed her teeth and off to dreamland. Mom went to bed shortly after and was happy to be in bed just before 10pm.
    Sleeping all the way home... still asleep at home
March 2   Claire was in good spirits, tho she had a long drive back home from Grandmas house today. The weather was beautiful for the drive and mom didn't mind, tho it was long. Dad was at an open house much of the day and ran some errands before coming home to meet everyone. In the evening, the family got some chicken fingers for dinner and relaxed much of the evening. Claire's cousin came by to visit briefly and eat dinner. She was visiting from Michigan and looked great. It was fun spending time with her, just too bad she won't be in town too long.
    CuddlesLooking at Gma
March 1   Big fun today! Claire and her sibs were visiting Grandma and Grandpa (of course mom was there too). Claire got to spend some time with her cousin from Barbados - and a famous chef - and the family cooked up some yummy food including some lobster. Mom just nibbled as she isn't a big seafood person, but she does enjoy a nibble of lobster dunked in melted butter on occasion. She thought about how dad was missing out on this one, the one time he couldn't visit Grandma, and they choose to cook lobster.
Mom made some 'puff' bread and a brownie cake (with dark fudge frosting - smothered it in coconut). And all the aunties made other food to share... Today is Claire's aunt and uncle's anniversary... 25 years!
Claire slept great after a nice big dinner and lots of cuddling from Grandma.
February 29   Leap day... jump for joy... everyone says it means we have an extra day this year... but it doesn't add an extra day to your life -- I guess that may well depend on how you spend it. Mom decided to make the most of it and called Grandma and Grandpa (as she often does) and check in on them... who answers the phone but mom's cousin from Barbados... mom knew they had come for a visit, but didn't realize they were still there, and would be for the weekend. Knowing that dad's band was playing, and he'd be working much of the weekend, she packed up the kids and headed down to see her cousin - 5 hours later, they arrived. They got in around 9pm... just long enough for a rum punch (yes, it was after noon, but delicious all the same) and some cuddles for Claire from her cousin... then off to bed for a big day tomorrow. Couz had cooked up some flying fish (Friday in Lent) and mac and cheese (like mom has never had before - yum!).... and it was big fun just to be there!
February 28   Claire had a good day. All smiles all day. Mom took her to school and then went to work. Mom spoke with Claire's aunt today and asked what she thought of the note mom wrote and copied her and they agreed that something should be done, but mom feels like she's exhausted all her options. She is sure tho that there are other options that she just doesn't know about yet.
February 27   Claire had relaxing day. She was home much of it while mom worked. Mom had cancelled her PT today, and later learned that her therapist would have had to reschedule anyway. The reason mom cancelled initially was because she had cut back on Claire's therapy due to the insurance no longer paying and mom having to pay out of pocket (private pay). Mom had complained enough and Claire's aunt and uncle have kindly offered to give Claire some therapy for her birthday gift. A very generous offer that leaves mom feeling sad that she cannot provide Claire with everything she needs... but to get her therapy and stay flexible is something that Claire should not have to go without. With as much as mom pays to the govt it would be nice if they could kick some back and help cover what Claire really needs, but until then, she will have some financial help from her family.
With the therapy not happening today, mom also had an appt to meet with the school to discuss Claire's transition into Kindergarten in the fall. It was a nice meeting with a lovely woman whose grand child is very ill and in and out of the hospital frequently. Mom couldn't give any helpful advice in regards to the child, but certainly explained her own situation and how she has learned from Claire. She's learned to try not to grieve the perfect child that Claire is not nor will ever be and try not to dwell on that as it cannot be changed. She's learned not to grieve the anticipation of Claire's loss on earth, as Claire is still here and while she may not be forever, she can be enjoyed.. she can be cuddled and loved. When Claire is gone, as with any sick child, there will be plenty of time to mourn ... but for now, it is grins and smiles and cuddles that surround our Peanut. That is something that must be taken in and learned, it is not something that a mother can be told and will be able to do. It is often still difficult for mom, but mom doesn't like to be sad, esp when there is a happy little girl in front of her, looking for a smiling face back at her!
Mom took Claire to her classroom while she met with the Kindergarten lady. After the meeting she and Claire headed back home and Claire was exhausted.
February 26   Claire was off to school and mom off to work. At lunch, mom ran some errands and tried to get ready for Claire's brother's Basketball Ice Cream Banquet/Social. It was essentially awards night for the Fall/Winter sports. He was on the golf and basketball teams. He was surrounded by his best buds and all full of himself. Mom had printed some pix of the team earlier in the week and bought a thin piece of plastic to put over them on the table. She cut a basketball in half and filled it with tissue and candy... the other tables had balloons and lovely artwork, but we were talking boys and what would they love better? Candy of course. It was a really nice evening. Dad had coached the basketball team, and ready to go until he finally came to the realization that he was just way too sick. If it were just about him, he would go, but it was about getting all the kids sick too, so he decided not to go. Mom went and took video while the assistant coach presented the awards. She played it back for dad when they got home, and he felt a little better. He would have loved to present the awards and speak to each kid about how well they did, or tell a cute story about each child, but couldn't get out of bed. Claire stayed home with him, but sitting in her chair in the hallway as she played with her toys on her tray. Dad could see her from the bed, but mom gave him strict instructions NOT to touch her unless she was throwing up. She was fed and changed and quite content and she took Claire's sibs and would only be gone to the awards for about an hour or so.
February 25   Claire's dad seems to have the flu... he's been a bit feverish and in bed a lot. He gets up randomly to check his email but mom insists that he not leave the room and take his laptop to the bed with him to work. He really needs the rest and he needs to keep his germs in the room. Mom is nervous about sleeping in the same room, but Lysol Spray goes everywhere before she goes to bed... dad agrees it must be done, tho it practically makes him choke.
February 24   Today marks the 'Angel Day' of Baby Tierney. It's been 2 years already and mom remembers her as the most beautiful Trisomy 18 baby she'd ever seen pictures of... it is a great loss. She lived for almost 3 years and showed everyone that she could do it! She was born a few months after Claire and those two looked nearly alike. So much so that once mom showed a pix of Tierney with her babysitter and dad asked, 'Who is that holding Claire'... well it wasn't Claire. She is missed.
February 23   Today is the Girls Scout's World Thinking Day. They get together and show dances and eat foods from different countries. Claire's big sister was part of the festivities and their country was Ireland. She seemed to have a really fun time.
February 21   Claire went to school very early today as mom has a big meeting. The teacher she had last year insisted that since Claire never gets to school early, her mom must not be paying for the morning care, but mom insisted that she was. Just so happened that there was a receipt for mom there and she showed it to the teacher (Claire's teacher wasn't bothered one way or the other). Looking at the recept it looked like Claire's mom was paying too much -- really she wasn't... anyway, long story short, the teacher asked the morning care coordinator and everything was fine...she was looking out for Claire, it seems, and mom was happy that she cared so much.
Mom's meeting went very well and she had a nice day afterwards. She's working on an idea for a centerpiece for Claire's brother's awards night... the basketball table.
February 20   Claire was home today with mom. Mom had a meeting scheduled with Claire's school, but it was cancelled, so mom took Claire to therapy. It was her first therapy in about a month, and still private pay. Claire did well, she was sleepy as therapy was late and she refused to sleep in the morning. Claire took a nap when she got home, a short one and mom went to check on her and she was awake and happy.
Claire's big sister had a meltdown this evening, angry at the rules placed upon her. She yelled to her father, 'I don't like you' to which her father mumbled under his breath, 'get in line'.
February 19  

Mom assumed that the dr's office faxed the test results to the clinic at Claire's school and that they were recieved. Rather than get caught off guard again, mom decided to call and be sure the results were recieved, and they weren't.
Mom called the dr's office to ask them to resend and then went to work. Dad said he would watch Claire and take her in when everything settled down. When mom got to work, she was told by the clinic that the results she got were the first results and she needed the second results faxed. Mom called the drs office and asked them to refax the latest results, and they faxed the first ones again. Mom called one more time and gave them the dates of the tests taken and finally the correct test results were sent. Mom got the okay from the clinic nurse and dad got the okay from mom to take Claire to school. IT was just before 11am.
Claire went to school and everyone was so happy to see her.
Mom got word that Claire's medicaid application was denied. <sigh>. No one ever asked about Claire's condition or what it was. They just said no based on financial need and that startles mom as the family isn't exactly wealthy - esp for a family of 5 with one child who is... well... medically complex. They even mentioned that it goes against the family that they are 'intact'... meaning it counts against them that the mother and father are married, kids lived at home, etc. So not only do they make too much money for Claire to be considered (a joke in itself) but they are happy... so heavens forbid that Claire should get medicaid. They also made it sound like everyone would be applying for medicaid, even tho mom specifically said that it was just Claire they wanted it for. Mom felt like she was in need of learning a foreign language to deal with rules that were foreign to her... she didn't feel like the rules they were playing by were normal, perhaps from several years of evolution to deal with the rarest of situations. Yet they are more than happy to send a registration form for voting (mom and dad are already registered voters), and mom thought that was a very odd way to capture voters. It was also on the online application mom filled out, she could more than easily register to vote at the same time. Not sure when the dept of family services obtained the elections office under it's supervision, but very odd. While applying, mom was thinking maybe folks who aren't citizens can apply. That is sad, as people like Claire can't get this money, and mom wonders who is getting it. Evidently, if you aren't a citizen, but you are pregnant, you could possibly get your delivery paid for through this program... and there's more. ... but please correct me if I'm wrong here. Maybe mom is just really whiney tonight and needs to lighten up... life is good all over and she will just have to give up something to get Claire's therapies paid for... maybe the real estate market will pick up really quickly too.... anyone wanna buy a house? ;o)
So therapies will continue to be private pay, or none at all. Mom has decided to cut the therapies down to twice a month and try to do what she can at home, using the therapies as more of an exam for the therapist to examine Claire and give mom and update on how she is doing -- which muscles are getting tight, etc.

February 18   The family got up and visited with friends before heading home. On the way, mom called to see if Claire's test results had come in. They had and the nurse at the drs office said it would be faxed to the school so Claire could start school tomorrow. The family arrived home and everyone settled in for the evening exhausted.
February 17   The family woke up at thier friends' home and spent the day there. Mom had a really nice time visiting and holding Claire while the boys went to the gym. Big sister discovered Wii and was sore in the evening from playing. Claire's family was planning on driving home in the late afternoon, but a storm came through and they decided to spend the night.
February 16   Today is Grandpa's birthday... Happy Birthday Grandpa.
The family woke up at their friends house. Mom slept well, getting up twice when Claire needed to be shifted. The bed was a type of waterbed and she was up a few more times when she realized her back wasn't hurting.
The family were getting showered and dressed for the two hour drive to Atlanta and the funeral.
The drive was relatively quick and they met Claire's uncle, aunt and a friend for lunch, then off to visit more friends and family, then to the church. It was a tearful day as the person lost was a person who changed so many lives, only for the better.
After a very emotional afternoon, the family headed back to the house and watched a movie eating chicken fingers.
February 15   Mom went to work and dad took Claire to work. Mom tried to leave early, but with the NIU shootings, mom worked a little later to get a condolence posted. It was a very sad day. Mom finally reached home and was still working answering emails and checking on projects. Somewhere in there she found time to pack for everyone and get on the road, but not until after 5:30pm. The family was trying to make it to a HS basketball championship game that a friend was playing in, and they managed to get there at half-time so they could see the second half. Also, the game went into overtime, it was very exhausting to watch. The family stayed at a friends home and were up late enjoying the company.
February 14   Its St. Valentine's Day and Claire's big sister is so excited. She's signed her cards and taped lollipops to each -- all by herself. Mom was so happy she was so proud that she just took care of it all. Claire is still out of school, so mom didn't get her any cards for today. Mom went to work and got in a full day.
February 13   Claire was suppose to have therapy today, but since she isn't eligible for school, mom decided to keep her home.
Claire did get her stroller/wheelchaire/Kimba adjusted so it fits now and she is more comfortable.
February 12   After getting Claire's results yesterday, mom was fired up that Claire could go to school. The drs office said she needed only one negative test result to go back and mom had it in hand. She went straight to the clinic, thinking something could go wrong, and sure enough, the school clinic nurse said that Claire needed *2* negative test results... within 24 hours of each other and after she'd been off antibiotics. Well, mom was IRATE. So much so that the nurse put the health dept on the phone so mom would have someone to yell at... after the 'chewing out', mom ended up saying that she really did understand that the rules are there to protect Claire from getting it again and she hoped that the other parents at the school were going to abide by the rules as Claire and her family had to.
Mom took Claire back home and broke the news to dad. They were bewildered as to how to get 2 stool samples in 24 hours, with Claire's constant constipation, they were lucky to get one every week... the Health Dept called back to speak with mom and said they would use the first sample, if she could just get one more negative test result, they would let her back in. Claire has no symptoms and has had none in almost 2 weeks, not to mention she was off 3 different antibiotics, one was an IV antibiotic. Mom also mentioned that no one in Claire's household had what Claire had... they would have know. While big brother and big sis had fevers, that was not what Claire had. Mom insisted that Claire only went between school and home and said the only likely place she had gotten this was at school.
February 11   Claire had a nice day, today, the results came in for her tests and they are negative -- looks like she will be going to school tomorrow.... finally. Mom had a very busy day at work and was exhausted by evening, but still managed to put patches on big sister's girl scout vest and send her off to the home and school meeting with dad so her troop could lead the pledge at the beginning of the meeting.