Thank you everyone for your wonderful thoughts and prayers!
Claire's Journal -- Month 58
was up and ready to face her day. Mom got the smiling child out
of bed and fed her, then got her in her bath and she was a happy
camper. Off to school where the ladies showered her with attention
as they do so well.
No letter of denial yet, so everything is on hold... even the appeal. She had asked the nurse to fax it directly to the house to save time... but it either isn't going to be faxed, or there is no letter... mom is guessing she will get it later today in the mail. Fingers crossed that some wonderful person has intervened and Claire will get her therapy covered.
was a happy camper this morning. After eating she was so full
of energy that mom put her in her stander. She fell asleep there
after a bit. Meanwhile, mom returned a call from the insurance
company. Not from the person she left a message with yesterday
(Claire's new account manager), but rather from someone mom calls
'the denial nurse'... she told mom that she was typing up the
letter of denial for Claire's PT services (tho she hadn't gotten
any notes yet from the PT) but she was going by the book in that
Claire had exceeded her number of therapy visits per injury.
When mom realized that this was not the nurse who is Claire's
case/account manager, the nurse who mom left the message with,
she asked the denial nurse about that. The nurse said that the
call was simply forwarded to her. In other words, the account
manager nurse didn't even feel the need to return mom's call,
she just forwarded to the denial nurse who left a message for mom to
It is all very upsetting for mom. The appt is this afternoon and mom needs to keep the appt, even at the expense out of pocket, it is so important that Claire get help to make the strides she needs. The drs can see that she is doing well because of the therapy, for example, just by her learning to bear weight, her hips look good. She will be a healthier kid in the long run. The Insurance nurses are just going by the book, not knowing Claire... just her diagnosis and that is where mom gets angry. Mom was told that she had no recourse until she got the letter of denial which will state that she could try to appeal to member services, but wasn't given much hope. Mom reminded her that they had an appt that afternoon, but it was of no concern to the denial nurse.
Claire had a nice therapy today. The PT knew she would probably be coming less frequently so she went over the important stretches for Claire and things mom needs to continue to work on and watch for. She noticed Claire was more tolerant of her ankle stretches, and attributed that to Mom doing them over the holidays.
Claire didn't sleep much today and expected her to go right to sleep after the PT, but mom rushed her off to her brother's basketball game. Mom thought that was odd that she didn't sleep (esp since her school mentioned she kept sleeping through much of the day), but the Peanut was exhausted by the end of the day and mom tried to keep her up for just another 2 hours. Not much luck until dinner time and mom woke her, she ate a late dinner, burped and then off to bed (after meds and brushing teeth).
slept in while mom was on the phone trying to get answers to
Claire's insurance for PT. Mom called the insurance company,
left a message for Claire's new account manager to return a call
regarding what needed to be done to get Claire her much needed
(expensive) PT covered. Mom also called the ped to see if they
had a clue, since Claire's appt is tomorrow. The ped's office
put in a new referral for care and said it would likely be approved
just before her appt in the morning. Fingers crossed they are
right, but mom isn't so optimistic... she's been down this road
before. Hopefully the account manager will expedite things. Claire
has a new one, so mom isn't too sure what to expect on that front
Claire was off to school and when mom picked her up, the teachers said she'd slept much of the day and didn't eat too much. Mom thought she's probably growing, but also could be getting a cold again.
|January 7||Claire had a nice morning... she was very patient with mom as mom got ready for work in a very slow manner. Claire got her meds and diaper change. When mom got to school, she realized it wasn't a 'regular' school day, but a teacher planning day. So Claire will be with the afterschool folks all day.|
weekend was really relaxing. She was well behaved in mass, just
wanted to snuggle and sang a little bit, but not too much. Loved
rocking back and forth too, mom really needs to push for her
to get a swing -- maybe for her birthday.
She's not crazy about sitting around watching tv all day, but if someone is holding her, then she's fine with it. She had a nice long nap in the middle of the day while mom caught a nap too.
|January 5||Lazy day for Baire. She ate well in the morning and then threw up much of it. So mom went to liquids. Mom is thinking she got rid of a lot of gunk that was building up in her throat as she did great for the rest of the day keeping down her food and catching up on much needed rest.|
is back from her whirl-wind Christmas Holiday tour. Everyone
got to get in there Claire time and it was good for Claire too.
She threw up early in the day, but traveled great coming up from
Grandma's house and had a snack halfway up -- 2 oz of bananas,
yum -- kept them down. Mom was pleased that she kept it all down.
Claire hasn't been real big on eating early in the day, she's
certainly an 'afternoon' eater, like her mom.
Dad said that the therapist called to mention that the insurance hasn't been 're-upped' for Claire's PT and hopefully that is just the season and everyone is busy or off. Hopefully that will all be taken care of before Wedn's therapy session.
full day of visiting family before heading back home. Mom was
busy finishing up laundry, hosing everything down with Lysol
and tidying up before the family leaves tomorrow. Gathing items and
trying to keep them together for packing tomorrow. Grandma was
great about giving Claire a bottle frequently so the fluids were
flowing with the Baire. The suppository mom gave her seemed to
not suite Claire well. After a day or so, she's not seeming constipated,
but the supp was seeming to give her diareah... so mom was hopeful
it would work its way out of her system soon as Dad changed her
diapies 3 times tonight before she went to bed.
On the way home, dad caught up with phone calls and learned of a tragedy one of the families at the kids' school. One little boy, who developed leukemia over the summer, had passed away. Everyone is devastated, as we all expect young children to thrive and parents should never have to bury their children. Amazing that someone so healthy this time last year, is not with us one year later, and this makes us reflect on our own family. We feel blessed and foruntuate that Claire is still here, and we pray for those families who have lost children over the past 5 years... especially this family, who should not be without their young son.
|January 2||The new year is in full swing. Claire is throwing up, but mom is wondering if it is from pushing to have a BM. Mom had given her a suppository (liquid type) and it isn't agreeing with the Baire.|
|January 1||The first day of the new year and everyone seems to be doing well. Big brother still has his sore throat which seems a bit better, but his ear hurts now... go figure. Dad picked up some antibiotics for him this morning and he should be on his way to feeling better. Claire is in good spirits and happy to begin another year.|
last day of 2007, and aside from the loss of friends and loved
ones, we feel very blessed to still have Claire in our lives,
as well as her siblings and family. We pray that 2008 will bring
health and happiness to all our family and friends.
|December 28||Ahh the days after Christmas. Spent uploading drivers for the kids toys on dad's laptop (camera and mp3 player), watching football and PT on Claire as she permitted. Fattening up the baby and stretching her out, all part of after Christmas along with eating turkey and taking naps as permitted. Preparing for the New Year with mom's sibs as they plan a blowout party for NYEve.|
|December 27||Up in the morning for the zoo. Claire would probably enjoy that, however mom forgot her stoller so she won't be able to go. Grandpa will watch her and they will bond, so that is on the plus side.|
|December 26||Claire hung out much of the day. She's been eating well and mom is noticing she needs some PT, so mom is going to kick that up a notch.|
|December 25||The family arrived at Grandma and Grandpa's home early in the morning and everyone was in bed quickly as they were all quite exhausted. Mom got her second wind as she had a short nap on the trip, and talked dad to sleep.|
busy day. Dad was up early and took the kids and friends to IHOP
for breakfast. Mom woke up just as they were leaving and Baire
was already up. Mom showered then got Baire dressed and fed and
she was a happy grrl. As the crew got home, they decided to go
out on a friends boat into the intercoastal. A friend watched
Claire and off the family went. After going up the I'costal,
they opted to see the ocean and had a little adventure. As the
were going through the inlet, the largest wave came over the
bow of the boat and everyone was soaked. Dad lost his phone as
it had too much water in it to turn on again (insurance is a good thing)
and they followed the coast down to the next inlet and came back to
the house. Claire's big sister vowed that she would never go
out on a boat again. Mom wasn't too tickled when it happened
either as she'd never experienced waves that big in a boat that small. But
everyone was excited and had a new story to tell. The family
had only packed an over night bag to go to visit friends for
Christmas Eve, so when mom's shoes and clothes were soacked, she needed
to do laundry. In the evening, the family was in their Sunday
best, so no worries about clothes, and at Claire's uncle's home, they
got some laundry done and mom's shoes were washed and dried, so she
could have them to wear. Mom got some wonderful slippers which
she slipped on in the evening as her shoes were drying.
Christmas Eve at Claire's uncle was fun. It was the first one Mom and Claire had been to in a couple years as Claire had been sick. It was nice to go and see all the cousins getting bigger and see their faces when they got their gifts. This year Mom worked on some old photos of Grandma and Grandpa (on dad's side - both deceased) and Dad framed some for them so they loved those. They also made a calender with everyone's birthday and anniversaries on them... it was also a hit.
After the fun, the family loaded up and were off to see Grandma and Grandpa (on mom's side).
|December 23||Traveling down to visit Dad's family and friends as part of the Claire Christmas Tour. It was fun staying with friends and visiting others, exchanging gifts and getting caught up on how the children have grown and what their interests are, so many following in their parent's footsteps with hobbies and how they spend free time. Very kewl to see.|
|December 22||Mom and dad didn't get out on time as there were a few more gifts that needed wrapping and projects yet to try to finish. The family left a little late today to get on the road, stopping at Grandma and G-pa's for the night.|
had a nice morning... she was up and quickly out the door as
mom wanted to go to mass this morning. Claire's big brother was
doing a reading at mass.
Claire arrived early to school and her teachers were impressed. She also brought them gifts for Christmas and they worked on getting her breakfast ready as mom left to go meet dad and big sis for mass.
|December 20||Claire got to school a bit late, but the teachers were fine with that. In the evening, mom baked sugar cookies and made fudge for the teachers baskets. She was up past midnight, but happy to have the gifts homemade - thinking teachers have a sweet tooth too. Between Claire and her sibs, there were 20 baskets made, and they were small, but many. Mom was going for quality in the basket, given the quantity of them needed. They were quite cute when they were done.|
was up at 4am. Crying. Mom went in to check her and noticed she
had a fever. Took her temp and it was 101.8 under her arm (add
one for the oral temp, so 102.8 degrees F). Mom was a bit upset
as this came out of no where and Claire seemed congested as well,
so mom gave her Motirn Cold med and something to drink. Claire
went back to sleep almost immediately and mom did too.
In the morning, it was as if nothing happened. Mom thought that was just because the Motrin was an 8 hour med, so she would wait until evening to determine how Claire really was. By noon, the med should have been wearing off, but Claire, a bit sleepy, seemed okay. Mom opted to take her to therapy today. Claire missed last week and with the holidays, likely would miss the next two weeks, so off they went and Claire did well. The therapist stretched her ankle more and Claire stood very nicely for her. Mom was pleased.
The discussed further what mom needed to do to get the AFOs and the therapist mentioned she probably wouldn't get in for a fitting before Christmas, so it will likely be an appt mom would make when things have calmed down after the holidays (and series of Birthdays to follow). No sign of fever during the day or night and mom was happy with that!
The family went to the neighbors in the evening to have dinner. Yum, it was so delicious and always fun to spend time with them.
|December 16||Claire's weekend was busy for everyone but Claire. She pretty much stayed home while mom ran her big sis to her Girls Scout meeting and left her sis there for a sleep over, then another party in the morning. Naps were taking on Sunday and big sis started getting a sore thoat about Friday afternoon, so probably shouldn't have gone, but it would have been hard to stop her. Sunday was restful and nice for everyone.|
|December 12||Claire is having a restful day at home, up for breakfast and fell asleep in mom's arms so back to bed she went. She was up a great deal during the night. Her blanket came off at one point, so she was chilly, mom is going to put a sweatshirt on her tonight. Hard to believe it gets so cool at night when it is going to be 82 degrees today. Once her foot got stuck in the crib bars, mom needs to put the blankets up over the sides again... often when her sheets are changed, the blankets are forgotten... and sometimes they just come off. Needless to say, mom, dad and Claire are all pretty tired today. Claire's therapy was canceled as her therapist wasn't feeling well. Mom will work on Claire's PT today, if she gets up soon. Big brother has a game today and kids are home with only 1/2 day at school today. Should be getting busy at the house soon, maybe that will be enough to wake the sleeping Baire.
Big brother had a game in the evening and it was a good one. Last 3 seconds were replayed and could have changed the game, but didn't and bro's team won. It was a tough team to play against and they were big and strong against our little guys, but game fundamentals won out.
|December 11||Claire stayed home today. She's not been keeping her food down, so mom decided to keep her home and see if there was any pattern to it all. Dad watched her in the morning while mom went to work. He gave her some cola in the morning and fed her well. She kept it all down. Seemed fine all day. The kids had a Christmas Pagent in the evening. Big brother was a king and big sister was an angel. Everything went very well. It was a packed house, as mom knew it would be and a little girl behind them was coughing so much everyone thought she would throw up. Fortunately, mom and dad learned from experience and got a sitter for Claire, so she could be home and comfortable the whole evening allowing mom to also take pix of the older sibs in costumes. Claire got a bath and dinner with her sitter, also giving mom a break and kept her food down all day.|
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