tag:blogger.com,1999:blog-86662122045722508552024-03-14T11:18:53.401-07:00Amazing JuliaChronicling Julia's journey back to health after being diagnosed with a brain tumor in late October, 2012. Unknownnoreply@blogger.comBlogger119125tag:blogger.com,1999:blog-8666212204572250855.post-32268208867176488222013-03-09T21:44:00.001-08:002013-03-09T21:44:47.389-08:00More from Julia's memorial <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWtpvspIn1zpH8lyXgVmsuQX3D7x6Qbf0j43BVMFCj_vJwCeXMTbVVrZVXZCeIGvVuX5vz4V00cSRt8MTANMoklqsB6Ek_enokxHb9nJ0TPh47F3J3vv5TtYOlssQLdgmXQk43iuVLRis/s320/crowd.jpg" height="213" style="margin-left: auto; margin-right: auto;" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">More than 300 people gathered to celebrate Julia</td></tr>
</tbody></table>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">I<span style="font-size: small;">'m posting </span>to share a few more picture<span style="font-size: small;">s and readings from </span>Julia's memorial service<span style="font-size: small;">.</span> It was such a wonderful thing to be able to come together with so many people <span style="font-size: small;"><span style="font-size: small;"> </span></span>who love Julia and celebrate her bright spirit. </span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">The service was led by close family friend and pastor Darrel Lynn, who had officiated at Carrie and Glen's wedding nearly ten years ago. </span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm3Mp7FIjJLkTrpi-vNBDLcpjyJ_HmNSNTiXNtbxCowHBajTz3EtPPN5qRQZm5eRH6Sc0j-pfq9GgeLDhWwEOrGsMBr2i7WDbO5AcNlXw6Jc6vYR6zkXmi3jPuaeqhy-Sa0rfVyX_1hjk/s1600/Amanda+Candle.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm3Mp7FIjJLkTrpi-vNBDLcpjyJ_HmNSNTiXNtbxCowHBajTz3EtPPN5qRQZm5eRH6Sc0j-pfq9GgeLDhWwEOrGsMBr2i7WDbO5AcNlXw6Jc6vYR6zkXmi3jPuaeqhy-Sa0rfVyX_1hjk/s320/Amanda+Candle.jpg" height="320" width="213" /></a></div>
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">We began with Amanda lighting a candle, then a video of Julia singing her favorite song, Shenandoah. </span></span><br />
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<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">Going to music class was one of Julia's very favorite things<span style="font-size: small;">, and mus<span style="font-size: small;">ic <span style="font-size: small;">was likewise an important part of the ser<span style="font-size: small;">vice. </span></span></span></span></span></span></span></span>Colleen, our much-loved music teacher, led us all in singing together: Shenandoah, Moon, Moon Moon, This Little Light of Mine and You Are My Sunshine.<br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br /></span></span>
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">Both of Julia's grandmothers, her two god-mothers, and he<span style="font-size: small;">r parents came up to spea<span style="font-size: small;">k. H<span style="font-size: small;">ere are the <span style="font-size: small;">texts o<span style="font-size: small;">f their speeches: </span></span></span></span></span></span></span><br />
<br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">Grammie Jen: </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;">As our families think about Julia we are sad her cute little self is no
longer with us, but before long those moments of sadness quickly turn
into smiles. She reminds us of Maria, a character in The Sound of Music. What do
you feel about a
little girl like Julia? She certainly kept us entertained with her
precocious little smile and her darling little dances. She was a
moonbeam you couldn't hold in your hand! Even a little girl who dances
on moonbeams has to clean up. It makes me think of how often she would
be in the shower with one of us and that little girl was a hot water
hog! Her love of water didn't stop with her shower. I remember taking
Julia to the pool in Folsom this summer. She relished in the fact that
every pre-teen and teen loved to
push the hot water button for her so she could have more hot water.
Before long she found the hair dryers in the dressing room! Carrie and I
couldn't believe how quickly Julia organized all the little girls to
keep pushing the button so she could stand under the hairdryer and have
the warm air pour over her. To say she had a way about her is an
understatement.</span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br />She would often shock us with her knowing smile or
her ability to something we had no idea that she was capable of. One
time when Glen was up cleaning gutters on the roof, Amanda came running
into the house to tell Mommy that Julia was going up to the roof.We
didn't know she could climb a ladder, but when Carrie crept out
quietly, so as not to scare her, Julia was just getting to the roof.
Luckily, Daddy quickly scooped her off the roof! Such a minx. She was
so excited to do big girl things like trying to put on Amanda's roller
skates or trying to get on her
bike or just march around the house in boots, singing the boots song! I
am certain that So You Think You Can Dance was in her future. She
performed the cutest dances, wiggling those tiny hips and shaking her
head in her special way. </span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br />You could always corral Julia with a good
story from a favorite book. She loved to hear certain stories over and
over, like the one about Nicholas the Bunny. Her grandpa and she loved
Red Hat, Blue Hat and that silly turkey! Our all time favorite was the
Belly Button book. Yes we had a special love for the bebo. Kissing
little pea toes and bebos became a loving ritual for Julia and her
Grammie! Anytime we were in a store, Julia charmed everyone, making
them smile when they saw her. It is what you do when you are drawn to a
beautiful light.</span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br />She truly loved her big sister Amanda, all her
grandparents, aunts and uncles and all her friends, especially her
Oliver,
Finn, Francesca and Alonso. Names that were so adorable when she said
them. She had a love of four legged friends too! Every time I see a
Chihuahua, I can't help but think about Rocko and Julia chewing up
carrots so she could spit them out for him to eat.</span></span><br />
<span style="font-size: small;"><span style="font-family: Verdana,sans-serif;"><br />On Friday morning
we saw a beautiful purple hyacinth poking its little head through the
dirt in the garden. Julia helped plant those bulbs this past fall.
Like the perennial hyacinth, Julia will continue to grow in my heart,
today and all around, always with me on this new journey. I know that
every time I look at the moon, a hot air balloon, or a purple butterfly,
I will definitely feel her with me. The most wonderful thing is that
she sure knew that she was loved.</span></span><br />
<br />
Nonna Carole:<br />
<br />
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<span style="font-family: "Arial","sans-serif";">There
is something very special about being a grandparent. It is hard to explain until it happens to
you. I know those of you who are
grandparents know just what I mean. I
married Glen’s dad about 8 ½ years ago and one of the nice outcomes is the
children we both got to add to our families. We went from 2 children each, to
four together. There were only 3
grandchildren then, but before we knew it there were 6. Julia was the baby. When the first born comes into the family,
there is such a sense of excitement, newness. For a few years this child gets all of the
attention. When the second child comes, grandparents
get to help with the care of the first born while mom and dad bond and get to
know this new addition to the family.
This is how it was when Julia was born.
Amanda was so excited about her new baby sister, loved to help with her
and show her off to anyone who would look and listen. But she loved having a grandparent with empty
arms who could read to her, take her to the park without waiting, and get her a
snack RIGHT NOW. I bided my time. I was coming up each month to babysit a few
days when Carrie and Glen worked the same days.
These were busy days with a toddler and a baby. We were busy each day, taking Julia to school
so mom could nurse her at lunch time, going to Whole Foods to see what snacks
they had out, explaining to Amanda why Nonna had a talking lady in the car
otherwise we would get lost. Then my
time came! One word-School. I would finally get that special time you get
right away with the first born, but have to wait for with the second. It was just Julia and I. What a special treat! What a special girl. Alone, she talked more! No competition from anyone else, it was just
her and I. She loved to ride in my
sling, which I needed for the walk from the car when dropping off and picking
up big sister. She would sit on the hood
of the car scoop her head down and under the sling and just about put the thing
on by herself. </span></div>
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<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; margin-top: 0in;">
<span style="font-family: "Arial","sans-serif";"> While we were together, she would point out
things around her, whether it was a bird, plane or hot air balloon, she was
aware of it all. Every visit we did
bath time. Wow, could she strip of those
clothes fast when I just said one word-bath!
She would be in the tub, toys out before I made it down the
hallway. She would be the first one in
and the last one out. </span></div>
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<span style="font-family: "Arial","sans-serif";">She
quickly became a seasoned gardener. I
just had to turn on the hose and she knew what to do with it early on. She was just walking when she could pick a
ripe strawberry, tomato, weeds and sometimes the whole plant. She took great joy in being outside, a girl
after my own heart. One of our favorite
things was going on an adventure, taking her out in the wagon and walking
around the neighborhood. We played “I Went Walking” and “Going on a Bear Hunt”. She
could fill that wagon with leaves in no time flat! Her nap time was taken cuddled on my chest or
learning against me on the swing. What
grandma does not love that! It will remain in my heart forever.</span></div>
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<span style="font-family: "Arial","sans-serif";">Even
when Julia was in the hospital, struggling with her illness she kept her sense
of humor. She showed strength and
determination. It became a game, who
could get her to smile and it was a special day when the smile was so big we
got to see her teeth! Every moment I spent
with this little angel was precious. She
was full of personality and a joy to be with.
I thank Carrie and Glen for giving me the opportunity to be part of both
of their girl’s lives, to be their Nonna.
Now I know Julia is in the arms of her other grandma, Glen’s mother
Diane and sister, Jeanne. She is our
forever angel and will continue to be loved by them and all of us here. </span></div>
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<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in; margin-top: 0in;">
<span style="font-family: "Arial","sans-serif";">Tia Krista: </span></div>
<span style="font-size: 15.0pt;">So Carrie & I tried to
multitask one day by talking while keeping half an eye on the kids. </span><br />
<span style="font-size: 15.0pt;">We were in the back yard
when Julia disappeared around the corner for a minute. </span><br />
<span style="font-size: 15.0pt;">She came back chomping on
a piece of watermelon. “That’s weird,” Carrie said to me. “We must have left
that out after lunch yesterday.” Things are a lot less alarming with kid #2. A
few minutes later she showed up with a cup of water. Then half a sandwich!
Looking back, we really should have checked what was up after the watermelon, right!?!</span><br />
<br />
<span style="font-size: 15.0pt;">I also have cherished
memories from before Julia was born. Amanda wished again and again that the new
baby would be born on July 6<sup>th</sup> so they could share a birthday. On
the 7<sup>th</sup>, I was on the phone with Carrie when her labor got so strong
that she had to hang up so she & Glen could bring Julia into this world. And
even though Amanda didn’t get to share her birthday like she’d hoped for, she took
her role as big sister seriously right from the start and loved Julia so, so
much. Even when Julia was a tiny little baby, if I didn’t greet her immediately
when I saw them Amanda would correct me. “Don’t forget Julia!” She would say. I
didn’t and I won’t. </span><br />
<br />
<span style="font-size: 15.0pt;">The incredible details of
her life have opened hearts and expanded the circle of those who love her so that
it now reaches well beyond immediate family and friends. I mean, all you have
to do is look around to see it. Each of you in this room (and so many who
aren’t in attendance today) have made it your purpose to care for Julia and
surround us all in your love. Meals show up, bills get paid, hugs, songs and
stories are shared. </span><br />
<br />
<span style="font-size: 15.0pt;">So knowing the generous
spirit that you bring with you today, I’d like you to ask your help with
something. If you feel comfortable doing so, please reach forward and touch the
shoulder of someone in front. This way, we can ALL feel the power of our
connection and direct our love up here to the Kings as I share a blessing. </span><br />
<br />
<span style="font-size: 15.0pt;">Carrie, Glen, Amanda and
all of us who need these words today: </span><br />
<span style="font-size: 15.0pt;">May the light of Love
surround you.</span><br />
<span style="font-size: 15.0pt;">its power protect you.</span><br />
<span style="font-size: 15.0pt;">Its presence watch over
you. </span><br />
<span style="font-size: 15.0pt;">And may you know that </span><br />
<span style="font-size: 15.0pt;">wherever you are, Love is</span><br />
<span style="font-size: 15.0pt;">This and every day. </span><br />
<span style="font-size: 15.0pt;">Amen</span><br />
<br />
<span style="font-size: 15.0pt;">I was up next: </span><br />
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">I’m
Francesca, Julia and Amanda’s other godmother, and mom to Julia’s good buddies
Oliver and Finn. The other day, Oliver and I were talking about Julia, and he
told me something remarkable. He said that maybe our souls are mostly love the
way our bodies are mostly water. In that case, Julia’s soul is particularly
well-nourished, because her life was one that was blessed with so much love,
from those early days when she never seemed to leave her snuggly perch in the
Ergo carrier to her transition to a mischievous, independent toddler who
delighted in making her family laugh. </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">When Julia
was born, Amanda blossomed as an amazing, compassionate, patient and nurturing
big sister. Julia let Oliver practice his big brother skills on her too.
Fiercely protective of their Julia, Oliver and Amanda jumped through
hoops—sometimes literally-- to make her laugh, and mostly tolerated the sudden
destruction of their projects when she came crawling through. Julia was never
daunted by the bigger kids, but held her own with a spiritedness that was
characteristic of her strong sense of self.
Then along came Finn, and Julia got her turn to be the big one. She
loved to feed Finn whatever she was supposed to be eating, and he never said no
to her snacks. They loved to hide under the covers together and chase the cats
all over the house. Julia taught Finn her special silly walk and they cracked
each other up trying it out together. </span></div>
<div class="MsoNormal">
<span style="font-size: 12.0pt; line-height: 115%;">Watching
these four kids together, through thick and thin, has been an incredible privilege
for me. The love they have for each other, their empathy, the joy of their play,
the volume of their arguments and the swiftness of their forgiveness—it’s
pretty amazing to behold. I know they will carry the gift of that love in their
hearts always, just as Julia carries their love for her. </span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-size: 15.0pt;"> And finally, Carrie and Glen came up to speak. Here is Carrie's: </span><br />
<br />
<span style="font-size: 13.0pt; line-height: 200%;"> Love is
something that we all know about and feel, but it became more alive and real to
me when I became a mother. </span>
<br />
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;"> On July 6,
2007, Amanda was born and I was euphoric. I was thanking all the hospital staff
and was acting as if I had just won the Oscars. She was perfect and amazing. I
loved her so much that I was worried about having enough love for another
child. Luckily, I had nothing to worry about. Love is strange that way. It just
keeps growing.</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;"> On July 7,2010, just hours after
celebrating Amanda's 3<sup>rd</sup> birthday, Julia Kay King was born. It was
another amazing and perfect experience. Glen, Amanda, My mom, Francesca, and
two midwives were all there as we welcomed Julia into the world, our family and
home. She wasted no time and got straight to nursing.</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;"> I love being
with my family. We are outside going on walks, hikes, bike rides, and
adventures as often as we can. We read stories till we can't see straight. We
work in the garden together. We all eat oatmeal and applesauce. We love to
camp. Many times, we all slept in the
same bed together. At least some of us slept. Amanda helped Julia with her
potty training by bringing her bottles of water to consume as she sat on the
pot. We sing and like to compete with each other in high stakes competitions
like who can get their pajamas on first. Sometimes we argue or get on each
other’s nerves, but we all know that we can count on each other and that we
love one another.</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;"> As most of
you know, Julia had been sick over the summer and was admitted to the hospital
in late October. There were a lot of ups and downs, celebrations and
disappointments. Julia, backed by the rest of us, fought hard and strong.</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;"> On January
24,2013, we realized that Julia's body was just too sick to go on. With the
help of an amazing hospital staff, Glen and I were able to hold her as she
passed. Then, Glen, the nurses, and our family, wheeled Julia and I into the
serenity garden so that her body could be outside once again. As I was riding
in a wheelchair holding my baby in my arms, I felt like a new mama full of
serenity and peace holding my baby. I believe that Julia's spirit lifted while
we were in the garden and went to hug her big sister, Amanda, as she was
playing at Ragel Park. Amanda and Julia love each other very much, and even
though Julia's no longer in her body, that love will continue to live on. While
Julia's death was not anything that I ever wanted to have happen, her life and
death were full of love, and that is perfect.</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;"> When Julia
became sick and was hospitalized, we were all so sad and worried. It was very
hard to be separated from each other, our routines, and our sense of family.
These months have been hard on our bodies, minds, and spirits. We don't know
what the future will bring. Fortunately for
Glen, Amanda, Julia, and I, our family was much bigger than just the
four of us.</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;"> Our parents,
brothers, aunts, uncles, cousins, nieces, nephews and friends came out in
droves. Some of you waited with us through surgeries, some of you spent time
with Julia, some with Amanda, some with Glen or I. You have prayed for us,
helped us financially, supported us in so many ways. You fed us, and continue
to feed us both physically and spiritually. Your love is what has made this
time bearable and has held us up so far. Thank you for sharing your love with
us. It is an amazing thing to be the recipient of this love, and just to know
that it is possible. If there is one thing that I know for sure it is this:
Julia and our family are loved. I have no doubt that Julia is surrounded by
love and is very happy. I also know that although the rest of us are very sad,
angry, numb and numerous other things, I also know that we are loved and that
we will be happy too.</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;"> There is a
plaque that was always in my home growing up, and my parents gave it to me for
my home. It is going to be my touch stone to help me remember this love. This
poem by Emmet Fox, reads:</span></div>
<div style="line-height: 200%;">
<br /></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">There is no difficulty that enough love will not conquer;</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">no disease that enough love will not heal;</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">no door that enough love will not open;</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">no gulf that enough love will not bridge;</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">no wall that enough love will not throw down;</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">no sin that enough love will not redeem…</span></div>
<div style="line-height: 200%;">
<br /></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">It makes no difference how deeply seated may be the trouble,</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">How hopeless the outlook,</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">How muddled the tangle,</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">How great the mistake,</span></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">A sufficient realization of love will dissolve it all...</span></div>
<div style="line-height: 200%;">
<br /></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">If only you could love enough you would be the happiest and
most powerful being in the world.</span></div>
<div style="line-height: 200%;">
<br /></div>
<div style="line-height: 200%;">
<span style="font-size: 13.0pt; line-height: 200%;">Glen spoke from the heart without writing it out ahead of time, so there are no written remarks to share here. Key to what he had to say was that what matters most is our relationships with each other. </span></div>
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In the weeks since Julia's passing, the strength of those relationships has proven itself as the community has continued to rally around the King family. Many delicious and love-filled meals have arrived at their house, a successful bake sale took place, a bench has been placed in her honor at Ragle Park, more than 700 stones (one for each day of her life) painted and placed around trees and flowers grown in her name. Children who never met her have sung in her memory. A branch of the local library is creating a book collection in her name. She is always on our minds and in our hearts. </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8666212204572250855.post-35873190095396019312013-02-18T20:16:00.003-08:002013-02-18T20:16:53.166-08:00Grammie Jen Checking In <span class="userContent">My dear beautiful friends and angels, you have
all been such an amazing and supportive group of people. The word
community takes on a whole new meaning to me now! You have given us
your time, prayers, thoughts, and support. None of it was taken
lightly! It was taken with love as it was given to us!<br /> I am so happy to inform you that Julia's corneas were successfully transplanted into a 2 year ol<span class="text_exposed_show">d
boy and a 54 year old woman. I am so happy that two people will be able
to look at the world through the beautiful corneas of such a special
angel that only saw wonder and beauty and awe in her two short years.<br />
I would like to thank whoever is involved in the angel of hope program,
I believe that is the name of the group, that stitched all the angels
that came from all over the country to surround us all, especially
Julia, in love! The angels were suspended above the doors of the
service for Julia and gave extra support at the celebration of her life.
We were so blessed to have you as a part of our journey. We suspended
the angels with the hearts that were also sent anonymously to Julia
during her hospitalization. The love and prayers continuously
surrounded us all.<br /> I hope you all had a wonderful day last week as we
celebrated valentines day. It was a lovely day here in Folsom and a
lovely day at the beach that Carrie, Glen and Amanda went to.<br /> I love you all and bless you and send sweet thoughts to you all.<br /> Love,<br /> Grammie Jen</span></span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8666212204572250855.post-76322459035034299482013-02-15T21:16:00.001-08:002013-02-15T21:16:55.398-08:00Bake Sale Success <div class="separator" style="clear: both; text-align: center;">
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The outpouring of love in support of the King family continued with a hugely successful bake sale yesterday. Heartfelt thanks to everyone who organized this event, the many families who baked up a delicious storm, and everyone who stopped by to make a donation and sample the goodies. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8666212204572250855.post-55168595804168610152013-02-12T21:18:00.001-08:002013-02-12T21:19:02.212-08:00Bake Sale in Julia's Honor There will be a bake sale to support the King family in front of Oliver's Market in Santa Rosa on Valentine's Day. The families in Carrie's moms group are planning to offer some delicious, Valentine's-themed treats, and would love to see you there! <br />
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Thursday, 2/14 from 4-7PM in front of Oliver's at 461 Stony Point Road, Santa Rosa.<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8666212204572250855.post-75414987245914852002013-02-04T22:07:00.001-08:002013-02-04T22:07:43.745-08:00Beautiful day in Julia's honor Saturday's memorial was a wonderful celebration of Julia's bright light and all the gifts she brought to us. The service included four readings, and a few people requested they be posted here.<br />
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Reader 1: from The Prophet:<br /><br />"And a woman who held a babe against her bosom said,<br /> 'Speak to us of Children,'<br />And he said, 'Your children are not your children.<br />They are the sons and daughters of Life's longing for itself.<br />They come through you but not from you,<br />And though they are with you yet they belong not to you.<br /><br />"You may give them your love but not your thoughts,<br />For they have their own thoughts.<br />You may house their bodies but not their souls,<br />For their souls dwell in the house of tomorrow,<br />Which you cannot visit, not even in your dreams.<br />You strive to be like them, but seek not to make them like you.<br />For life goes not backward nor tarries with yesterday."<br /><br /><br /><br /><br />Readings from Rumi:<br /><br />For Reader 2: Moses and the Shepherd<br /><br />Moses heard a
shepherd on the road praying:<br /><br />"God, where are you? I want to help you, to fix your shoes<br />and comb your hair. I want to wash your clothes<br />and pick the lice off. I want to bring you milk<br />to kiss your little hands and feet when it's time<br />for you to go to bed. I want to sweep your room<br />and keep it neat. God, my sheep and goats<br />are yours. All I can say, remembering you,<br />is ayyyy and ahhhhhhhhh."<br /><br />Moses could stand it no longer. "Who are you talking to?"<br /><br />The Shepherd said, "The one who made us, and made the earth and made the sky."<br /><br />Then Moses said, "Don't talk about shoes and socks with God! And<br />what's this with your "little hands<br />and feet" Such blasphemous familiarity sounds like<br />you're chatting with your uncles ...<br /><br />The shepherd repented and tore his clothes and sighed<br />and wandered out into the desert.<br /><br />A sudden revelation came then
to Moses. It was God's voice saying:<br />"You have separated me from one of my own. Did you come as a Prophet<br />to unite or to sever?<br />I have given each being a separate and unique way<br />of seeing and knowing and saying that knowledge.<br />What seems wrong to you is right for him.<br />What is poison to one is honey to someone else.<br />Purity and impurity, sloth and diligence in worship,<br />these mean nothing to me.<br />I am apart from all that.<br />Ways of worshiping are not to be ranked as better<br />or worse than one another.<br />It 's not me that's glorified in acts of worship.<br />It's the worshipers! I don't hear the words<br />they say, I look inside at the humility.<br />And broken-open lowliness is the reality,<br />not the language!<br /><br />Moses ran after the shepherd, and<br />Moses finally caught up with him.<br />"I was wrong. God has revealed to me<br />that there are no rules for worship.<br /><br />Say whatever and however your loving
tells you to. Your sweet blasphemy<br />is the truest devotion. Through you a whole world<br />is freed.<br /><br />Loosen your tongue and don't worry what comes out.<br />It's all the light of the spirit."<br /><br /><br /><br />For Reader 3: Each Note<br /><br />God picks up the reed-flute world and blows.<br />Each note is a need coming through one of us,<br />a passion, a longing-pain.<br /><br />Remember the lips where the wind-breath originated,<br />and let your note be clear.<br />Don't try to end it.<br />Be your note.<br />I'll show you how it's enough.<br /><br />Go up on the roof at night<br />in this city of the soul.<br /><br />Let everyone climb on their roofs<br />and sing their notes!<br /><br />Sing loud!<br /><br /><br /><br />Reader 4: A Great Wagon<br /><br />Today, like every other day, we wake up empty<br />and frightened. Don't open the door to the study<br />and begin reading. Instead, take down a musical instrument.<br /><br />Let the beauty we love be what we
do.<br />There are hundreds of ways to kneel and kiss the ground.<br /><br /><br /> and<br /><br />Feeling Separation<br /><br />A night full of talking that hurts,<br />my worst held-back secrets. Everything<br />has to do with loving and not loving.<br />This night will pass.<br />Then ... we have work to do!<br />
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I hope to soon write more and post some more pictures from Saturday. It was a real community effort, and a testament to the powerful network of support that surrounds the Kings. Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8666212204572250855.post-5628214531178167742013-01-30T21:13:00.001-08:002013-01-30T21:13:51.517-08:00Flowers for Julia So many people have asked how they can help the Kings during this time of mourning. The outpouring of love and support, and all the creative ways of showing that love have been incredible, and Carrie and Glen thank you from the bottom of their hearts.<br />
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For anyone who feels moved to participate in this way, Carrie and Glen would like to invite you to help decorate the hall on Saturday by
bringing a vase of flowers to place on the stage. After the service they
encourage you to bring your flowers home with you, and in this way carry with you some of the beauty and love we share in Julia's memory. <br />
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8666212204572250855.post-81432455173389109892013-01-26T21:39:00.000-08:002013-01-26T21:39:50.675-08:00Memorial Service for Julia On Saturday, February 2nd at 2:00PM, we will come together to celebrate the shining, mirthful little girl we love and to honor her memory. Julia's memorial service will take place at the Person Auditorium at the <a href="http://ci.santa-rosa.ca.us/departments/recreationandparks/parks/communitycenters/finley/Pages/default.aspx" target="_blank">Finley Center</a> in Santa Rosa, followed by a reception and light refreshments. Children are welcome to come, and some special activities will be included for them.We hope you are able to join us. <br />
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Carrie is also working on creating a memory book about Julia, and she welcomes your help. Please write down your favorite Julia stories or memories and send them to Carrie via a comment on this blog or by email (carsoren AT yahoo DOT com). If you have photos of her that Carrie might not have, please send those as well. This book will be treasured by all of Julia's family, but will be most especially important for Amanda as she grows up. Thank you for your help. <br />
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<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-8666212204572250855.post-20363845619605752272013-01-24T14:11:00.001-08:002013-01-24T14:13:22.825-08:00Sweet Julia is Free NowOur beautiful girl left her body this morning. She was so happy at the end, cradled in her mom's arms with daddy by her side and so much love surrounding her. We sang and talked with her, and at the very end we took her outside to a beautiful garden where birds were singing and a sweet cat came to sit on our laps. So many tears, but also joy that she is free from the struggles she has endured with such grace and strength. She left so peacefully, and as Grammie Jen says, "My angel is now truly an angel her spirit is in us all! Her spirit will live on in us all in purple butterflies and flying high in hot air balloons! We are the sad ones but know she is at peace and enfolded in all love."<br />
Love to everyone,<br />
Francesca Unknownnoreply@blogger.com21tag:blogger.com,1999:blog-8666212204572250855.post-91315754807472829472013-01-23T22:08:00.001-08:002013-01-23T22:08:15.695-08:00Julia update Grammie Jen Reports:<br />
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My dear one, today was another day of roller coasters. We were very happy to hear that her stats were better and her heart was getting stronger. She was using a less toxic amount of oxygen and of course she got approved for therapy and help from the Regional Center, accepted for social security, and Carrie was accepted back into the family house. All good things. The first EEG [measuring brain activity] was good but the 2nd one was very bad. They will do another one but odds are 70% not hopeful. I personally am going for the 30% group of it being OK. [She is getting a medication that can cause the type of results that she got, so they will take her off the medication and repeat the test.] We shall see. It is so hard to see her little body going through this so I choose for the small 30%. Thanks and I love you all and all that you continue to do to for us all!<br />
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Love,<br />
Grammie Jen<br />
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And a more recent update: <br />
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They have been able to reduce the epinephrin, which is one of the more toxic drugs she is getting, the level of oxygen she is getting is now down to 50%, and her PH is in the normal range. These are all very good signs that her body is starting to recover somewhat from the trauma of the resuscitation.<br />
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Unknownnoreply@blogger.com7tag:blogger.com,1999:blog-8666212204572250855.post-81530754595565057032013-01-22T21:38:00.000-08:002013-01-22T21:38:39.804-08:00Miss Julia is making use of just about every support the hospital has to offer. An oscillating ventilator is breathing for her, she has a PICC line, IVs, arterial lines, lies on a cooling blanket and is being monitored by an incredible team of nurses, doctors and respiratory therapists. She is still completely sedated. She has been relatively stable with all of this support, but must be weaned from each of them before their risks become too great. We know that her heart and lungs have been greatly taxed. Her liver, kidneys and other organs so far seem to be functioning, an impressive feat considering what she has been through. All we can do now is watch and wait and give her tons of love.<br />
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And love she is getting. Her family and friends have taken turns by her side today, kissing her feet in their little ruffled socks and stroking any patch of exposed skin that is not hooked up to tubes or wires. Amanda went to school this morning and came this afternoon to visit with Julia. She brought her good friend Oliver with her, and Julia's buddy Finn came in too. Later Julia's cousins Connor and Molly came to see her also. All of the kids did so well, even though it is hard to see their Julia in such a scary setting. <br />
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We don't know what the next few days will bring, but we do know that Julia is embraced in the incredible warmth, love and light of her family and her community. <br />
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<br />Unknownnoreply@blogger.com11tag:blogger.com,1999:blog-8666212204572250855.post-47412731923973682722013-01-22T11:41:00.001-08:002013-01-22T11:41:40.820-08:00<h5 class="uiStreamMessage userContentWrapper" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent">So
sad to tell everyone that Julia had a terrible night. She needed to be
resuscitated. The team did CPR for more than 8 minutes before she came
back. She is now in a medically induced coma. Her heart and lungs have
been badly compromised. Carrie and Glen are with her, and Amanda and
Oliver are going to come see her after school. All we can
do now is send her and her family all our love.</span></span></span></h5>
Unknownnoreply@blogger.com11tag:blogger.com,1999:blog-8666212204572250855.post-64608501712766577432013-01-21T21:41:00.001-08:002013-01-21T21:41:58.215-08:00The Fight Continues Julia continues to be in extremely serious condition. Her pneumonia is severe enough that even with a high level of support from the ventilator, she is struggling to breathe. She is getting medication to help take fluid off her lungs, and she is sedated. She was understandably agitated, which makes it more difficult to breathe, so the sedation is very important. <br />
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One bright note is that her two last cultures came back negative. Hopefully that is an indication that the infection is responding to the antibiotics. <br />
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Grammie Jen brought Amanda home to Santa Rosa tonight, so hopefully she can go to school in the morning. Nona and Grandpa Don are with Carrie and Glen in Oakland tonight.<br />
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I know I don't have to ask you to keep Julia in your minds and hearts;
she is already there.<br />
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We are with you Julia and family--we are adding
our strength to yours. <br />
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<br />Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8666212204572250855.post-80364601032535107092013-01-20T21:23:00.000-08:002013-01-20T21:23:35.256-08:00Strong Julia fights a new battle Miss Julia is battling a very serious infection. She was transferred to the ICU at CHO in the middle of the night with a fever of 104 and a heart rate over 200. The incredible team there worked hard to get her stable. By morning she was doing a bit better, but continues to be a very sick little girl. She was unresponsive throughout the first part of the morning, but as the day went on we were thrilled to see her start to move her arms and legs again, stick out her tongue when her mom asked her to, and begin to peek out through her half-open eyelids. She was transferred to Kaiser in the late afternoon, where the team who knows her the best was standing at the ready to give her the care she needs. <span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent">Her
1 mile ambulance ride from CHO to Kaiser went smoothly. She had her
mom, a doctor, a respiratory therapist, an RN and two EMTs on the
ambulance with her. She tolerated the trip and got settled in to her new
bed back in the PICU. The team there went right to work getting more labs
drawn for cultures, placing a new IV and getting ready to give her the
contrast so she could have both abdominal and head CT scans. Her fever
was back up, as was her heart rate, but she was also more wakeful. They are hoping
to better understand the source of the infection so they can give it a
more targeted treatment, but in the meantime she is getting some pretty
intense antibiotics that will hopefully knock out whatever bugs she is
dealing with. </span></span></span><br />
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<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent">I continue to be amazed at the strength and determination which radiates out from this incredible little girl. She has been through so much in her two and half years, and she continues to work so hard to heal. I know I've used this photo before, but it hangs in her crib at the hospital and I spent a lot of time looking at it today. It is one of my favorites, because it so perfectly captures her radiant, joyful, mischievous self. We love you, Julia. </span></span></span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8666212204572250855.post-46924610653802947412013-01-20T11:38:00.001-08:002013-01-20T11:38:57.377-08:00Julia needs our love todayMiss Julia had a very rough night and has an infection. She is stable for now and sleeping in the ICU here at CHO, but her condition is pretty serious. Please send all your good thoughts her way. Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8666212204572250855.post-63274347097920311072013-01-19T21:15:00.000-08:002013-01-19T21:15:39.379-08:00<span class="userContent">My little angel had a good day in spite of
little sleep and a very high fever and numerous tries to get an IV in
and numerous tries to take blood. Her fever was 103.7 [due to a staph infection diagnosed last night] and her heart
rate was 200. They need to give her a transfusion but they
can't get the blood to do the type and cross match. A bummer! We know
it will work out soon! </span><br />
<br />
<span class="userContent"> She had a fun time with Grandpa Terry and did
tons<span class="text_exposed_show"> of smiling and sticking out her
tongue and just being darn cute! She seemed to love hearing him read
her stories and he just loved all the smiles. He said that OT and PT
came at the same time and when they sat her up and gave her a
massage on her sides and back she was practically purring. She is
exhausted as they finally got the IV in at 4 am. We just hope that it
will last and be able to be used for the transfusion and antibiotics.
They were going to do both a spinal tap and an abdominal CAT scan, but they
canceled both and Carrie was glad of that so she didn't have to go
through more things. </span></span><br />
<br />
<span class="userContent"><span class="text_exposed_show">After Carole and Don got there this afternoon
Terry left and the doctors and staff told Carrie that she had to leave
and get some sleep! She was a bit of a mess! She is now home and I
hope taking it easy! It has been a rough week! The wonderful news is
that Julia is doing so many things that she hadn't been before. Terry
is so sure that he heard a sound when she was in full smile and seemed
to be giggling! and he says the tongue is great and he had her working
to bring it to midline and to both sides! She is trying very hard and
getting more successful. That girl is just amazing!</span></span><br />
<span class="userContent"><span class="text_exposed_show"><br /> Hopefully we
can get the transfusion done and that will bring her heart rate down and
then maybe we can get a handle on the staph infection. We want her to
keep the forward motion going. Thanks so much for all your prayers and
thoughts. They do help. Love you all and hope you are enjoying this
lovely weather! Here it got up to the high 50s and felt a lot like
spring! A bit early but very nice. I swear it is colder in my house
than outside!<br /> Love you all,<br /> Grammie Jen</span></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8666212204572250855.post-49126113300542701312013-01-18T22:03:00.001-08:002013-01-18T22:03:51.562-08:00Hanging out with Grandpa TerryAs you can see from this sweet photo, Julia got to spend some time with her Grandpa Terry today. She is clearly delighted! Carrie reports that Miss Julia had a fever of 103 today. She is getting IV antibiotics and the team is continuing to work on reducing her ventilator settings. Unfortunately she will need a blood draw in the middle of the night, so the no-sleep saga continues. Glen has been in Santa Rosa with Amanda since Wednesday night; Carrie will stay in Oakland with Julia until Grandpa Don and Nona come tomorrow, when she will head home for some Amanda time. Hurray for the amazing team of grandparents! <br />
Wishing everyone a good weekend,<br />
Francesca <br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8666212204572250855.post-61280162466673955362013-01-17T21:30:00.000-08:002013-01-17T21:30:27.144-08:00Tired girls <h5 class="uiStreamMessage userContentWrapper" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent">My
dear sweet angels, I don't have a ton of information as my oldest girl
is having a rough time with so many docs and people demanding her
answers to multiple questions and her little one being exhausted
mainly from lack of continuous sleep. So far she is "spitting in the wind"
about that. They don't seem to understand that a 45 min stretch of
sleep is just not doing it for a regular 2 year and certainly not for a recuperating 2 year old! The man that came at 6 this morning was so
proud that he hadn't come at 5 like he was supposed to and when Carrie
said that they were doing things to her until after 11 and then awaking
her about once an hour for suction that it just wasn't cutting it! I
get exhausted realizing how hard my little one is trying and not getting
rest! They are going to assign a case manager to her next week and
hopefully that will help give her some help with getting the various
specialists in sync and the therapy also. She <span class="text_exposed_show">thinks
that the docs are all really good, but it is just so very tiring! She
did get a bit of time with long time dear friend Leigh this morning, but
she didn't get out of the room until almost 6 this evening to try and
sneak a shower in and they said she was too late. She just broke down
and they reconsidered and let her in. YEAH for people with a heart!
Unfortunately she only got to hold Julia for about 45 minutes as she was
pretty scheduled and so many doc were coming through!<br /> Hopefully
tomorrow will be better. Terry will go in the late morning and stay
until Carole and Don get there Saturday afternoon. We are hoping that
that will give her a little break and give Terry the chance to give lots
of kisses and stories to our little one.<br /> I am so bummed that I still can't get my own kisses in and am afraid that she won't know her Grammie! Ah yes she will!!!!!<br />
Anyway, my friends, my girl is progressing but it is very hard and we
sure need to pray that she can get some rest by being able to sleep in
the night. I know it will happen, now that they are becoming more and
more aware of it.<br /> Thanks for listening to a frustrated Grammie and
mom as she is so worried about her girls. Not to mention the third one
in Santa Rosa, at least she is hanging in and her dad and uncle are with
her now and she has the schedule of school. A good thing!<br /> Love you all,<br /> Grammie Jen</span></span></span></span></h5>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8666212204572250855.post-59203286649676963552013-01-16T22:29:00.001-08:002013-01-16T22:29:41.660-08:00Grammie Update <span class="userContent">The family meeting was today and had lots of
info and mixed feelings. The therapy was a great report as expected but
the medical side had the same issues that we have been dealing with and
how they would rectify the issues. The doctors are at odds as to their
methods. Kaiser wants her there for any medical issues which mean that
she has to go back to ICU and lose the aggressive therapy that the<span class="text_exposed_show">y
are doing at Children's. They don't have the same philosophies. The
ICU docs are great but just want to keep her on the high vent settings
that are safe and not push her at all. The rehab docs want to get her
off the vent and move forward. It is a real dichotomy! They are trying to
figure out why her red blood cells don't seem to be getting better -
she has had over 6 transfusions at Kaiser and is close to needing
another one tomorrow. They know she is bleeding in the gut but not a
ton and they are constantly drawing blood, which shouldn't be that much
but who knows? She has another fever and Carrie says she knew that she
wasn't great for the past two days, but feels that it is probably viral
again and they do all the tests and then she is fine for another week.
It is definitely crazy. Both my girls are having a very hard time.
They can't let her sleep a solid amount of time as the vent needs
suctioning and such so they have to keep waking her up - I swear that
that gives me a fever!!!<br /> I sure hope that we can stay and move in a
forward motion. She is trying so hard and just seems to be hitting
these bumps. Carrie is having a terrible time with all of this! Glen
went home and Carrie will be sleeping under the sink for the next couple
of nights. Terry is talking about going over to relieve her on Friday
night so she can go home. We will have to see. Unfortunately my Carrie
is having a very rough time in deciding what to do and how to handle
it. She needs giant hugs and prayers right now. <br /> I love each of
you and appreciate that you read and try to understand my crazy
ramblings as I try to make sense of the senseless! We need and
appreciate all that you do.<br /> Love,<br /> Grammie Jen</span></span><br />
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8666212204572250855.post-50748220379908494402013-01-15T22:19:00.001-08:002013-01-15T22:19:42.238-08:00<h5 class="uiStreamMessage userContentWrapper" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent">My
sweet pea is hanging in there trying oh so hard to get stronger and
better. We were excited that they were going to take her outside, but
outside meant outside her room. That is pretty darn good too and we
will take it!!!! They are also trying to get it so that she can sit in
the doorway of her room and feel a part of the goings on on the floor. I
guess the nurses sit across the way and many kids walk down the halls.
I guess that would let them keep an eye on her and let her feel like
she is part of the world at large!!! You go my little Julia!!!<br />
Tomorrow morning is the big meeting and we hope that some questions and
such will be answered by the team. I talked to Carrie for quite a while
today and she has a great deal of faith in the team and knows that it
will work out. They are bringing out a hematologist to take a look at
her blood count having trouble going up. I am glad but hope that it is
just that they are just taking too much blood from her. They seem to be
still waiting to get permission from Kaiser to do the bronchosopy.
Hopefully they will get some answers. They are doing her breathing
shaking [this is a vibrating vest they put on her to help keep her lungs clear] at 2 am and they wake her up several times a night when they
suction her. I hope that the concerns about disrupting her sleep will
be addressed and not just put as a hospital policy which seems to be the
answer they get right now.<br /> Carrie and Glen have one last night
tonight at the Family House and Carrie was happy to learn that from 10 -
6 she can use their showers and kitchen and such. That is a big
relief. They are also hopeful that they can get back in in about a
week. I sure hope so!<br /> I hope to be able to tell you about her big
"outing" from the room tomorrow! I am sure that she will be thrilled no
matter how big or small it may be!<br /> You all are keeping us sane and okay! Thank you so much for all you do for us.<br />
Another little side note, my" baby" brother is having some heart
problems and could use a few prayers! Thanks, angels! I love you!<br /> Love and hugs I look forward to giving a great report tomorrow!<br /> Love <br /> Grammie Jen</span></span></span></h5>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8666212204572250855.post-33986698448212681452013-01-14T21:37:00.000-08:002013-01-14T21:37:25.684-08:00The Desat Mystery Continues... <h5 class="uiStreamMessage userContentWrapper" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent">My
little angel is tricking us again! She started desating on Sunday
night after everyone left and she was so very sad! Now she is doing it
for no apparent reason.<br /> Every time Glen left the room she would
desat. Carrie was with her and she was playing the piano with one foot
and messing with the abacus with the other and having a fine time when
she desated twice. What the heck!!! <br /> Carrie and Glen will try to
enjoy their last night in the family house. They have to leave to give
the room to someone else. They hope that they might get in again at a
later date. So it is sleeping under the sink again. Bummer!!! I
didn't even get to see it! Boo Hoo!</span></span></span></h5>
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<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent"><br /> We are trying to come up with
questions to put before the doctors on Wednesday morning. If you have
any ideas that we may not have thought of let me know. The list is
already forming.</span></span></span></h5>
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<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent"><br /> I love you all and know you are working hard and we
appreciate it. We need to figure out what this desat stuff is about
and get back to the great last few days we had. The neat stuff is that
the PT is trying to arrange a trip outside for Julia by the end of the
week taking a nurse and such so that she can go. I sure hope it can be
worked out. She did desat during PT this morning so they have to have
all the equipment and staff present to keep her safe. It would be so
wonderful for my girl. Lets hope and pray that they can figure out how
to make that a possibility.<br /> Love,<br /> Grammie Jen</span></span></span></h5>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8666212204572250855.post-3536745206292889292013-01-13T20:14:00.001-08:002013-01-13T20:14:21.276-08:00Another Good Day <h5 class="uiStreamMessage userContentWrapper" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent">My
little angel had another good day!!! Yeah!! Carrie said that
yesterday was so outstanding that today was good but didn't pass up
yesterday! Terry went and was very impressed with our girl. He hadn't
seen her in just a little over a week, but said he felt she was
definitely improved! Her movement and general alertness and her smile
were all bigger and better! He was excited because he got to see three
of his girls! He was skunked by Miss Amanda at Shoots and Ladders and
got to read a ton of stories to both girls. He says that the family
house is quite nice and is so glad that they are getting to use it.
Julia had two small desats today, but they were small and quickly under
control which is great!!!! She is still considered contagious over the
bacteria that is growing in her trach, but I guess it is resistant to
antibiotics and they, I guess, can't treat it. Not real sure about
this! The thorazine seems to be helping with the desats a<span class="text_exposed_show">nd
that is very very good! So glad that they were able to take out her IV
line when they dced [discontinued] the vancomyicin. That was very good!<br /> Carrie
has taken Amanda home and will stay until Uncle Vince gets settled in
Monday evening. She may go Monday night so that she is there for
morning therapy, but still playing it out. Amanda may want her there
until Tuesday morning since she will be in Oakland thru the weekend. <br /> I
am luckily feeling much better and don't hack my lungs out continuously -
just a couple of times an hour. My fever broke and I am hoping I can
see my girl at the end of the week. We shall see! I want to be sure I
am completely better before I go! Can't afford to give my sweet pea any
other nasties!<br /> You are all doing a great job. Keep it up and hopefully I will get Glen to give me lots of great news tomorrow!<br /> Love you all,<br /> Grammie Jen</span></span></span></span></h5>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-8666212204572250855.post-11236797277977404422013-01-12T21:20:00.000-08:002013-01-12T21:20:20.534-08:00<div class="separator" style="clear: both; text-align: center;">
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<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent">My
little angel had a very big and happy day! My sources, Carrie and Nona
were very up to date! Julia only had one desat this morning and sat
with her head up for a couple of minutes! They ended the antibiotic Vancomyicin today as the staph appeared to be a contamination. I am
glad that she isn't on the antibiotic if she didn't need it but am still
puzzled at her higher WBC and fevers! Strange happenings! They are
trying her on a very small dose of an anti-convulsant drug to try and see
if that lessens her desats. The theory is that she is having seizures
in the brain stem area which are hard to monitor and can't be picked up
on the eeg. With only one desat, I am hopeful. It is scary at best,
but if it works, wow!<br /> Carole,aka Nona, is holding her and has been
with her the whole day. Amanda is having a sleep over and play time
with her good friend Audrey. That is nice so that Glen and Carrie can
have some time to be together and reconnect an<span class="text_exposed_show">d
talk without "a little pitcher with big ears". They were able to walk
earlier and are out to dinner together and perhaps a movie so they can
talk about something other than the hospital goings on! So nice to have
Don and Carole there!<br /> Nona says she thinks that the new drug makes
her tired but from all the things that Julia was doing today it sounds
like she should be tired any way! Carole says that she has learned how
to move her feet enough to rock her chair and that she is moving her
left hand to her mouth and sticking out her tongue and laughing a lot!
Lots of being held sung and read to. An overall great day. Love
it!!!!!<br /> You guys are awesome. I know much of this is your work and am so thankful! Keep it up please! I want these steps forward!!!<br />
Can't wait to get my hands and lips on my sweet pea! Am feeling better
and the fever didn't show itself today so hopeful the antibiotics are
working and that the flu portion are gone! May venture a small outing
tomorrow! Pete and I did a very quick run to grocery yesterday and did
it in about 10 minutes, I felt very accomplished!<br /> Love you all and so appreciate all you are doing.<br /> Love<br /> Grammie Jen</span></span></span></span></h5>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-8666212204572250855.post-49628141969708880162013-01-11T23:52:00.000-08:002013-01-11T23:52:15.870-08:00Sleepy Girl <span class="userContent">My dear ones, my little angel had a very
sleepy day! They gave her Benadryl to help dry up her secretions a bit
and it made her very sleepy. Glen said that she did wake up and he had a
really fun time with her and she was very responsive. That was good.
She only had 6 desats [when her oxygen levels drop] as of a few minutes ago. Still very scary and
they are still trying to unearth the cause. I guess two docs who hadn't<span class="text_exposed_show">
seen the entire thing saw it twice tonight and it blew their minds!
They had thought that everyone was exaggerating. Now they know how
fast and scary it really is. Now a few new ideas are flying. They did
an echo, which ruled out a hole in her heart. They are still
floating the bronchoscopy and we shall see. She did have therapy and
other than desatting during it she had a good workout. </span></span><br />
<span class="userContent"><span class="text_exposed_show"><br /> Last night
Don went over to see what was happening and he saw her spike another
temp and got them to do a CBC and found that she had a 22,000 WBC. The
blood culture was drawn immediately and it is growing staph so they have
started her on antibiotics. They are afraid of it getting to the graft
in her brain so they wanted the antibiotics right away. Good call. We
hope it will go okay. So glad Don was there.<br /> He went home this
afternoon but he and Nona will be back tomorrow morning to help with
Amanda. She, Don and Glen will go to cousin Conner's basketball game
while Nona and Carrie are with Julia. Amanda is not allowed to visit
Julia [she is on "precautions" in case she has anything contagious, which restricts her visitors] so they are trying to find things to keep her busy. She was
bummed to not be able to see her sister, but I am sure that Daddy and Grandpa
will do fine with the help of the cousins! Nona has promised to give
multiple kisses for me! </span></span><br />
<span class="userContent"><span class="text_exposed_show"><br /> I am on the mend I do believe! I will
probably get a flu shot even though we think I had a form of it, but it
can protect me against some others. Get your shots!!!! Stay healthy!
We need you!!!<br /> We need to work on this desat thing strongly and clear up this infection and wipe it out for good!! I know you can do it! </span></span><br />
<span class="userContent"><span class="text_exposed_show"><br /> Love to all and will update after I talk to Nona and Carrie tomorrow!<br /> Love <br /> Grammie Jen</span></span><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8666212204572250855.post-19916345437329200742013-01-11T00:01:00.003-08:002013-01-11T00:01:18.533-08:00Grammie Update<h5 class="uiStreamMessage userContentWrapper" data-ft="{"type":1,"tn":"K"}">
<span style="font-weight: normal;"><span class="messageBody" data-ft="{"type":3}"><span class="userContent">My
dear ones, Julia is trying so hard to do her best! She works hard at
her therapies, but has a bit of a hampering as she is having so much
trouble with her desating. She is being quite a mystery to the docs.
She goes from 100% Oxygen to turning blue and passing out in less than
30secs. It is happening much too often and is extremely scary and oh so
exhausting for my little one. I think we need to work on them finding
out and fixing what is going on with my girl! <br /> The doc told them
that he thinks that maybe she is seeing some things and sometimes she
doesn't. It may be that she can decipher that which is the most
familiar. So Carrie and Amanda are packing up her most favorite things
to bring to show her and see what happens. They are planning to go on
Friday night. We are hoping Julia will be off restriction and Amanda
can see her. <br /> Amanda is having a much harder time now than before. I think that she is really fried at all that has <span class="text_exposed_show">been happening. Hopefully it will bet better soon. I know my angel will get there!<br />
Overall my girl is definitely progressing, just these pesky roadblocks
that need to be circumvented! I am anxious to hear how the speech
therapy is going as that will be very interesting. They are going to be
having a family meeting on Wednesday and that will give them hopefully
some answers and such. I wish I could go, but the doc said that I need
to stay away until my bronchitis is totally gone! My flu is on the wane
and I just need to get the chest to be better. Makes me feel like a
welsher when my little one is going through so much harder stuff!!!<br />
So our job is to figure out what is going on with her desating and how
to remedy it. I am sure that we can do it. You are the best! Thanks
for taking on this new assignment. I can't wait to report our conquest
of it!<br /> Love you all<br /> Grammie Jen</span></span></span></span></h5>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-8666212204572250855.post-59655753559622118442013-01-09T23:22:00.002-08:002013-01-09T23:22:24.699-08:00Making FriendsMiss Julia started therapy today and she is one tired girl! She is working hard both in therapy and on making steps towards weaning from the ventilator. Currently they are working on reducing the level of oxygen she is receiving. She, Carrie and Glen love the therapists and the doctors they are working with--and of course the staff love Julia as well. Keep up the great work, Julia, we're all pulling for you! <br /><div class="separator" style="clear: both; text-align: center;">
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