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RSV Rears its Ugly Head 2.4.10...entry from mom
So sorry for the lack of updates, my hard drive
crashed on me a few weeks ago and Reagan has been
keeping me very busy. She got a sinus
infection mid January and did really well with it.
We went and saw Dr.Dan and he got here on
antibiotics ASAP and she was good to go in no
time...so we thought! A few days after she had
finished her antibiotics Reagan started with a
cough, that turned into a junky cough that turned
into a fever that turned into, well you see where
I'm going with this. So by Tuesday we were in
Madison in the PICU, Reagan had RSV. She did really
well and we were home by Saturday. We have
been still working on getting back to 100%, slowly,
but surely we are getting there. We are hoping
by next week she will be able to go back to school
in time for her class's Valentine's Day party.
We made her Valentine box and wrote out all the
cards for her classmates to keep us busy so far this
week.
Hopefully I'll have my computer back in another week
or two and will be able to upload some pictures
then.
Happy New Year and Back at School 1.6.10...entry
from mom
We hope your holidays were wonderful and filled with
lots of laughs and love. Joe got home in time
for a family New Year's Eve fondue, and being the
huge party animals that we have become we were all
in bed sleeping by 10:00! We had a nice lazy
New Year's day and Reagan enjoyed watching the Rose
Parade and playing Wii with Daddy most of the day.
Reagan was excited for her first day back to school
in almost a month on Monday. She had a great
day and when I picked her up she didn't stop talking
about her day for 15 straight minutes! I could
barely get a word in edgewise. Now we are back
in our routine with school, therapies, standing,
stretching, and soon soccer, crafty and music
classes will start up again. We are lucky and
thankful for Reagan to have been so healthy so far!
Happy 2010, I hope it brings you all the best!
Merry Christmas 12.29.09...entry from mom
Another holiday has come and gone, it always seems
like such a blur. We all had a nice time
seeing our family and spending some time together at
home. Joe actually went 3 whole days without
working for the most part:) I think Reagan got
more than enough toys again this year that I don't
know where to put! I think we will go through
her toys and see what we can donate to NBT and the
hospital. Joe and I got Reagan her very own
purple Dell laptop that didn't quite make it for the
big day, but the Littlest Pet Shop Wii game that
Reagan and Joe played for hours made up for the
delay. Now Joe is off in Germany for work, but
will be home for the New Year, so Reagan and I are
just chillin', playing with all the new presents and
napping in the afternoons, not to shabby of a week!
Thanks everyone for all the gifts:) As usual
way too much!!!!!!!!!!
Early Christmas Present, a new family member
12.24.09...entry from mom
Congrats Mike and April welcomed Gianna Barbara
Imhoff into the world at 4:10pm on Christmas Eve.
We couldn't be happier for you!
Post op check in 12.22.09...entry from mom
What's with the weather lately when we have to go to
Madison for the doctor? Well, we made it safe
and sound, I think the tension in my neck and
shoulders is at an all time high, but what do you
do? Reagan's check up went very well today.
Her back looks awesome and her leg is on it's way.
They decided to take her purple cast off and put a
soft leg immobilizer on because of concern with pain
and skin breakdown...good thing they did.
Reagan did have some breakdown and issues once they
took it off. Now she has a soft cast that is
removable that she will have to wear full time for
the next four weeks, but at least we can shower
without issue now! Now it's on to Christmas:)
Happy Day 12.18.09...entry from mom
This morning Reagan got a wonderful package in the
mail from her classmates at Glen Park, it was a big
bundle of Get Well Cards from her friends.
That certainly made her smile and feel so much
better (me too)! She was excited to look at
and read each and everyone of the cards. There
were lots of stickers and cute drawings and well
wishes and miss yous...so sweet, just warms your
heart.
Reagan has been my little helper in the kitchen
getting our last round of baking done. We made
some red velvet cakes on Tuesday and I let Reagan
decorate them all by herself. Can we say
sprinkles much? The tops was COMPLETELY
covered with sprinkles and red hots. She used
the entire bottle on one cake. I brought it
over to Uncle Josh's office to share with the
Alverno staff, I'm sure they were bouncing off the
walls the rest of the day.
Yesterday I decided to take Reagan out for lunch at
the Olive Garden, don't ask, she chose it!?
She did pretty well, we almost made it though lunch
without her leg being to painful. That 50
minute lunch adventure certainly wiped her out.
The nights are still a bit rough, but she is getting
through them without pain medication, just lots of
turning and repositioning every two hours or so.
We go to Madison on Tuesday to check in with Ortho
and I think get the last wedge put in.
Getting comfy at home 12.13.09...entry from mom
Reagan was happily discharged Friday morning, but
before all that happened she got her second H1N1
shot and the first set of wedges put in the back of
her cast to aid in the hamstring release. All
in all a bit of a painful end to the morning.
The past couple of days Reagan's leg has been
causing a fair amount of pain. We have been
giving her Tylenol and oxycodone for the pain, but a
side effect of the oxy is constipation. Poor
kiddo, if it's not one thing it's another. On
Tuesday the next size wedge will be put in....I sure
hope this brings huge pain relief in the end!
Surgery was a success 12.10.09...entry from mom
Reagan had her first rod lengthening and a hamstring
release this morning at 9:30. By this
afternoon she was telling the doctors and nurses her
gingerbread jokes and playing princesses with daddy.
She downed about half of a purple popsicle and even
had some cookies. Reagan is also sporting a
new purple cast that she will have for about four
weeks and we also busted out the gingerbread
sleeping gown that Grammie fixed up for her to wear
in the hospital. Hopefully we will be going
home tomorrow. On a side note the SMA kids are
in the house tonight...including Reagan there are
four kiddos, all healthy, just in for a g-tube, and
two for sleep studies.
We made it! 12.9.09...entry from mom
What a day! Despite all the snow we got we
made it safe and sound to Madison for Reagan's first
rod lengthening and hamstring release surgery
tomorrow. She had to be admitted the day
before so they could start her nutrition when they
turn off her feed at midnight. She is on the
docket for 9:30am. This should be a quick
procedure and hopefully we will be home by Friday.
Fun filled weekend 12.6.09...entry from mom
We
have been pretty busy and on the go lately trying to
get a lot of holiday shopping and baking done before
Reagan's upcoming surgery. On Saturday we took
Reagan downtown to First Stage to see "The Best
Christmas Pageant Ever". The second act was
great and had a fun 80's twist to it! Lots of
signing and dancing, right up Reagan's alley.
Unfortunately we had to scrap our plans to go out
for dinner because Reagan's butt/leg/hip was really
hurting her, so we got some take out and had fun at
home! Sunday Reagan was up bright and early to
see what St. Nick brought her. After enjoying
her new Strawberry Shortcake dress up thing Eric,
Carrie, Evan, Bella, my parents, and Josh and Nicole
came on over for lunch. Reagan and Evan had
lots of fun playing and making cookies. Such a
fun afternoon!
On
Friday Grammie Larson finished a new coat for Reagan
to wear in her wheelchair, it is so beautiful and
Reagan just loves it:)
Turkey, birthdays, shopping, and a tree
11.30.09...entry from mom
I hope you all had a nice Thanksgiving. We
enjoyed a wonderful meal and quite Thanksgiving at
Grammie and Grandpie Larson's with Uncle Josh and
Uncle Ryan. We also celebrated my
birthday(11/26) and my brother Ryan's (11/12).
Thankfully we had Reagan there to blow out the
candles for us!
Friday morning I got up at 4:00 to get in line at
Target to score some door busters (a TV) and then
went shopping with my mom, aunts and cousins...lots
of fun! Joe and Reagan had a "Daddy Daughter
Day" that include lots of Wii, a happy meal and
hanging out in pj's all day:)
Saturday we went and got our Christmas tree.
Reagan wanted this little crocked one and Joe wanted
the big tall full one...enter mom and Reagan won!
It is a bit of a Charlie Brown tree, but with lights
and some well placed ornaments it looks "amazing"
according to Reagan. I had to laugh, as I was
putting the hooks on the ornaments for Joe and
Reagan to hang I wasn't really paying attention to
where they were placing them. When I turned
around to put some on myself I noticed the two foot
radius of Reagan's reach was PACKED with ornaments!
11.14.09...entry from mom
Reagan is becoming quite the whiz on my laptop.
She can navigate her way around pbskids.org and
nickjr.com like no other. I think kids are
just born wired for technology these days. I
barely taught her what to do and she was off
clicking away from game to game.
Last weekend I flew out to New York for April's Baby
Shower...it was so much fun! I wish we could
see them more, especially with Gigi on the way!
Reagan is very excited to have another cousin on the
way. Her teachers said she was telling
everyone at school about Gigi!
Reagan's parent-teacher conference was this past
Thursday, and that went very well. Her
teachers all said how well she is doing in the K5
setting, she is becoming more independent, staying
on task, asking for help/assistance, and how very
imaginative and creative she is. Yeah, Reagan!
Reagan has not been sick at all (knock on wood).
She did have a UTI two weeks ago, but we were right
on top of that and Dr. Dan got her on antibiotics
ASAP and she was all good in no time. We are
still working on managing Reagan's butt, leg, knee
pain, but seems to be getting a better handle on it.
We are still working with renal regarding Reagan's
latest urine and blood work results to figure some
things out on that end.
...and now we are at the end of October
9.27.09...entry from mom
Sorry for the lack of updates this
past month, how time flies. We started off the
month celebrating Grandpa Larson's induction into
the WI Basketball Hall of Fame. Reagan has
been healthy and happy and busy. Reagan and I
went and got a membership at our local YMCA so I
could get her in the pool a few more times a week.
We are in the habit of going afterschool three days
a week and then Friday mornings she does her therapy
in the pool with Sue. I think it has helped
with her back/butt/hip pain, and she just loves
being in the water. Reagan has also been
having ultrasound twice a week to help with her leg
pain from her contractures.
Reagan also started TOPSoccer. It's at a local
grade school gym for an hour on Saturday mornings.
They practice and play games and have lots of fun.
Reagan even has her own jersey with her name and the
#5 on it.
Last week Reagan had her day long
neuromuscular clinic appointment in Madison.
We meet with Reagan's entire team of specialists in
Madison. All in all it was a good visit.
Reagan did well all day long and then lost it when
it came time for labs. We stopped at the
outlet mall in Johnson Creek on the way home and got
Reagan her first ever pair of Crocs. She
picked out a purple pair and some little princess
thingys to put in the holes...those cost more than
the shoes? They fit so well over her AFO's and
I got the lined ones so they will keep her toes
warm.
Reagan had her first Halloween party
on Friday at New Berlin Therapies. She wanted
to be a "Butterfly Princess" this year, and she is a
vision of pink in her costume, that's for sure!
Her and Leah zoomed around and had fun.
On Saturday after soccer Reagan had a play date at
Grammie Larson's and then her and Joe came to my
team's volleyball game. On Sunday we went on a
hay ride and picked our pumpkins at the pumpkin
patch and then Reagan had another party in the
afternoon...Alexandra's 5th birthday costume party.
For this party Reagan wanted to be a ballerina, and
a beautiful ballerina she was:)
This week Reagan has her school Halloween parade
Wednesday afternoon and then she is off on Thursday
and Friday. On Thursday she has OT and Speech
and then we are going to go swimming with Ben and
his mom and then go and get some pizza.
Saturday is trick-or-treating and then one more
Halloween party and on Sunday we have a volleyball
party with my team...busy, busy, busy.
PS...Happy 4th Birthday Steven!
September is over already 9.30.09...entry from mom
We have been very busy this month. Reagan is
doing very well and loving school! She is
working hard in all of her therapies and is doing a
bit of rolling and is up in her stander for about an
hour a day again. She has outgrown her wrist
splints so last week Donna measured and ordered new
ones. She let Reagan pick the color, actually
she got to pick two and Reagan chose a light purple
and a dark purple...of course. We are still
working on getting her power chair seating just so,
she is only able to tolerate being in her purple
chair for about 2 hours before she is in a world of
hurt, her Kid Kart she is fine in for some reason?!
Let's see what else...Crafty Class on Tuesday nights
has started up again, Grammie Larson and Uncle Josh
both celebrated birthdays, my cousin Eric and his
wife Carrie just had a beautiful little girl, and I
am helping coach the 8th grade girls volleyball team
at the school down the street from our house.
This weekend Grandpa Larson is being inducted
into the Wisconsin Basketball Hall of Fame....yeah
Grandpee!
Back to school 9.9.09...entry from mom
Crazy, crazy, crazy...we are getting back into the
swing of things very quickly. I think Reagan
and I got used to our nice and easy pace this
summer, not really going anywhere or having a full
schedule at all. Then came September 1 and
just like that our days are busy once again.
This year Reagan is going to Early Childhood in the
afternoon, still at Glen Park with Mrs. Burnett and
company (I don't know what I'm going to do next year
when Reagan won't be with them?!), but they are
trying something new and integrating them with the
K5 students. Reagan really seems to be
enjoying the new setting and everything. I was
told that on the first day many of the
Kindergarteners were interested in Reagan's
wheelchair and had lots of questions. Mrs.
Burnett said Reagan was so great about talking to
her classmates about her chair and explaining to
them that her "muscles just work differently"...she
makes me so proud, yet I want to cry all at the same
time:)
Fill the Boot and our first butterfly this summer
8.26.09...entry from mom
Yesterday Reagan and I took our first trip to the
zoo since surgery. She is having a lot of
discomfort in her power chair so we go the ol' Kid
Kart out and she loved being pushed around by
mommy:) We ended out visit with some
strawberry ice cream and a big hug with her telling
me she had the best time ever.
This morning we headed downtown to the Milwaukee Fire
Department's headquarter station for the MDA Fill
the Boot kick off press conference. As we were
walking up the engine was leaving on a call and
Reagan enjoyed seeing that and even clapped for them
when they came back to the station 20 minutes later.
She got to meet a bunch of the firefighters and the
chief and Milwaukee's mayor. She was
interviewed by Channel 12 and happened to be wearing
my sunglasses...I just about peed in my pants
laughing when I saw her on the news tonight.
She was asked what she liked best about her chair to
which she responded "it go's up and down and it's
purple!" After that fun we had Reagan's
healthcare meeting at Glen Park with all of her
teachers and therapists and aides which went really
well! Daddy even got home early tonight and we
all got to have dinner together:)
Back in the pool and Uncle Josh's new condo
8.24.09...entry from mom
Friday was a very exciting day...Reagan got to get
back in the pool for the first time since surgery:)
Wow, was she excited. I think she was up about
at 6:00AM because she wanted to get there. Sue
even used Reagan's new Danmar float device, which
gave her complete independence to swim on her own.
The smile on her face and watching her move her arms
and legs to swim was the bestest thing, it totally
made my day:) She swam so much that she worked
up quite an appetite and actually ate 4 chicken
nuggets and some applesauce for lunch. While
Reagan and Grammie Larson played I help Josh with
moving into his new place and then I took Reagan
over so she could check things out. She
thought the elevator was so awesome!
Six week post op appointment and meeting Nora
8.18.09...entry from mom
Great news...Reagan is recovering beautifully from
her surgery. We had her second post op check
in bright and early this morning with Dr. McCarthy
and he was very happy with how well Reagan is
healing. She got the
all clear to get back in the pool, up in her stander
and doesn't have to wear her bandages anymore, but
still has the 90 degree restriction and will until
January. December will be Reagan's next
surgery, just to extend the growth rods. This
will happen every 6-9 months until Reagan stops
growing, but will not be anywhere near the extensiveness
of this first one. We also saw Dr. Schroth and she gave us a new nasal mask to try with
Reagan's BI-pap and introduced us to a new SMA
family that was up in the PICU. Nora is a
sweet little 7 month old girl with SMA type I, such
a doll! We visited with Nora's mom, Jaime and
her grandmother for a while, and Reagan sang to
Nora, read her stories and drew pictures for
her...she is such a little mommy.
Bethanne came by for therapy shortly after we got
home and then Ann from Apria stopped by to bring
Reagan's new Percussor by. After a short nap
we headed to get groceries to make a special dinner
for Uncle Josh to celebrate his new condo that he is
closing on tomorrow. Reagan is sad that Uncle
Josh is moving out, but has already invited herself
over to his new place and will bring "two things,
Pinky and some snacks!"
On a side note...I think that we need
to stop watching Brewer games with Reagan. Last
night she asked Josh what "greatness tastes like?"
We all looked at her kind of perplexed and she
responded "Miller Lite."
Visiting daddy at work 8.13.09...entry from mom
Today was a busy day, relatively speaking. We
started our day off early with Bethanne for speech,
then our neighbor Brittany came by and read to
Reagan and played princess dress up dolls. We
had a really nice surprise as well...Mrs. Lucas
stopped by with four caterpillars for Reagan.
Wow, that's a lot of milkweed the next couple of
weeks. Reagan named them Louie, Smiley, Lovie
and Stripey. Next we got cleaned up and headed
downtown to Major Goolsby's for the MDA Lock-up
event. Reagan was so happy to get out and be
social. She did really well and lasted for
almost 2 hours before her back and bottom began to
bother her (that's a lot of B's). Once we got
into the van and had her fully reclined she was much
better. Since we were just a few blocks from
daddy's office we stopped up and said hi.
Reagan loved seeing where daddy works and especially
loved the "drawing board" on his wall.
8.11.09...entry from mom
Reagan is feeling better, still a bit of nasal
congestion, but she isn't as crabby and the
secretions aren't as thick anymore. We
switched Reagan's formula from Pediasure to Vivonex
which is an elemental amino acid. The idea
behind it is that because SMA kiddos' metabolize
food differently this broken down formula
should make it easier on Reagan to handle and digest
her food/formula. So far, so good...her heart
rate is lower at night and she also isn't all sweaty
and tired in the morning!
Last week the Gustafson Gang came by and spent the
day with us! Auntie Nicole got Reagan her own
Leapster with the Pet Pals game...wow does Reagan
love playing it. Sophia got it all set up for
Reagan and showed her how the game worked and she's
been playing it as much as we'll let her.
Grandma Helga and Grandpa Pat came for a visit on
Saturday and Sunday and brought Reagan a bag of
goodies to play with...lots of crafty supplies:)
Abby and Owen came over for a play date.
Reagan and Abby were bothered by us moms chatting so
they had to go back to Reagan's room to do their
coloring, then Owen came back and was bothering them
yet again. This time they dressed up like
"rock stars" to disguise themselves...you've got to
love little girls:) Kim and I certainly got a
kick out of them!
We got the results from Reagan's latest urinalysis
today and she has hypercalciuria and proteinuria...high
level of calcium in urine and protein in urine.
We need to decrease the calcium in Reagan's urine
and keep the concentration of calcium in her urine
diluted to help prevent any stones from forming.
The plan is to make as many modifications to
Reagan's diet as possible like lower sodium intake
and calcium to help her kidneys handle things well.
Reagan will be taking a RX that is like a
diuretic/water pill that will increase urination,
however with this we will have a few things we have
to keep a close eye on so Reagan will have labs done
in a few weeks and then again every month or so.
Thursday Reagan and I will be going to the MDA
Lock-up in Milwaukee for a bit of the afternoon,
then next week Tuesday we'll head to Madison for
post op check in #2.
4 weeks post-op 8.2.09...entry from mom
Last week Tuesday Reagan had her first post-op check
up. We headed to Madison early for all of her
appointments...first we saw Dr. Schroth and then Dr.
McCarthy came by. They were both so excited to
see how well Reagan was doing and couldn't believe
she was only 3 weeks post-op. Reagan still has
the 90 degree hip flexion restriction, is unable to
go in the pool, and has a bit of sciatica, but all
in all is doing very well. We did meet with a
new doc/specialty, a nephrologist (kidney doc).
While Reagan was in the hospital recovering we had a
bit of concern when we noticed a lot of blood in her
urine. To make a long story short a handful of
tests were ordered and they discovered that Reagan
has a high amount of calcium in her urine and her
calcium-creatinine ratio is not what it should be.
Her bone age is 7 months younger than actual age and
the DXA scan is still being read...all of that
combine has led to a diagnosis that Reagan's bones
are leaching calcium which is causing an
osteoporosis type thing. It is
something that we should be able to take care of
with a RX or quarterly infusion. All in all a
really good visit, the car ride home was a bit rough
and needless to say with no nap and a very eventful
day compared to what we have been experiencing
Reagan was in bed and sleeping by 6:30pm.
We had lots of visitors this past week...on Friday
we got to meet Delanie Farley, the newest addition
to the Farley family. Reagan was so excited
she even got to feed her:) Later that day Auntie
Jeannie and Auntie Jan came by with Grammie to visit
and bring us this year's fresh batch of Jeannie's
Jam. On Sunday Aunt Ann and Grammie came by to
visit and play as well.
I think Reagan may have allergies or is coming down
with a cold. Sunday and today were a bit
rough, but I'm hoping a good night sleep and some
central air will help her out.
July 26, 2009...Recovering well (entry from mom)
Reagan is now three weeks post op and doing very
well. Our days are nice and easy, not at all
hectic. Reagan has been back at PT, OT, and
Speech for a week and a half now and is doing very
well. We celebrated Joe's birthday on the 17th
and made him a super chocolate cake and a special
birthday dinner. Reagan has had some visitors
come to the house to say hi and play. Today
the Karls family came over for lunch and fun!
This past Tuesday Peyton, Kylie and Jen all
came by and brought us lunch and the girls got to
play outside and "jump rope". On Wednesday all
of Reagan's teachers came by for a visit.
Reagan was so excited to see them and now keeps
asking me when school starts again. Grammie
Larson comes by for play dates to help break up the
day a bit and our neighbor Brittany has come over
and read and played with Reagan too. We did
take Reagan out to Target last week. Joe's
Aunt Sue and Uncle Joe sent Reagan some money to get
herself something when she was feeling better so we
thought it would be fun for all of us to get out.
It was a very strategically planned outing. We
gave her a dose of Tylenol an hour before we left,
then once we got there split up, Joe and Reagan
looked for toys and I got the essentials and we met
up at the checkout in 30 minutes. It was
perfectly planned. By the time we got home
Reagan's head and neck were sore and she needed to
lie down. Reagan is able to tolerate about an
hour to two up in her chair. Her head and neck
have been achy as well as her knee, but really
nothing that can't be managed by positioning and
Tylenol. We go back to see the docs in Madison
for Reagan's post op check up on Tuesday.
Thanks to the Gasser family for the chicken pot pie
and Jen Elsner for lunch and my parents for the
turkey dinner last week. Also thank you to all
of you who have sent get well cards, emails and
gifts to Reagan. It is all very much
appreciated and really makes us feel loved!
July 10, 2009...Home
sweet home!
Pictures available at
http://www.facebook.com/album.php?aid=278382&id=735625203&l=efc5818b4a
Reagan's email address is
rally4reagan@gmail.com
if you would like to send her a message.
July 6, 2009...We
hope you had a nice 4th of July weekend!
Reagan is doing fantastic. After a bit of a rough
patch post-op she has made a huge turn around in the
past 24 hours. She was finally extubated Sunday
morning and by late afternoon was much more
talkative and asking if she could “sit on the couch
and have some lemonade and play Littlest Pet Shop?”
We have also been moved out of the PICU and are on
regular service now. Reagan’s respiratory function
has been stellar all day, and for the most part she
has been managing her pain really well (with the aid
of an epidural). Today was as big of a day as
yesterday…PT came by and got Reagan up for the first
time since Thursday morning at 7:00. Not only did
we sit her up, but she even got in her wheel chair
and drove to the “beauty salon” to get her hair
washed. She will not be able to sit at 90 degrees
for a few months so we just had to recline the back
of her chair a bit. They also measured her and she
is now 3 inches taller, and the amazing part is Dr.
McCarthy will be able to straighten her spine a bit
more in 6 months at her rod lengthening. Needless
to say she is pooped out and sleeping very soundly
now. Thanks so much for all the emails and well
wishes! Hopefully we will be home by week’s end.
July 5, 2009...Reagan
just got extubated at 9:00 this morning. Everyone
here was so happy to see her take this big step.
Her throat is a bit sore and it will take time for
her to adjust but she is doing great all things
considered. I will try an give an update later
tonight when things settle, I just wanted to share
the fantastic news!
July 4, 2009...Happy
4th of July to everyone! As of 10:00 this morning
they decided to keep Reagan intubated because of a
few O2 de-stat episodes in the past 12 hours that
happened when we moved Reagan. Good news is she is
peeing and her calcium and potassium and
electrolytes all looked good this morning and her BP
has leveled out. Her HR is still high, but they are
keeping a close eye on that. Dr. McCarthy showed Joe
and I the post op x-ray of Reagan's spine...it's
amazing how good it looks:) Last night we were able
to see the some fireworks out our window. Hopefully
tonight Reagan will be up to it and maybe catch some
too!
July 3, 2009...No
extubation today. Reagan was able to get a few
pockets of good rest in around 4:00am. This morning
during rounds Dr. Brazelton (PICU) and Dr.
Schroth (Pulmon) and Dr. McCarthy(Ortho) all met
with us. Surgically Reagan looks great, but she
still hasn't peed which means she is hanging on to
fluids and at risk for respiratory issues so they
are going to keep the tube in. Her calcium and
electrolytes are off as well, but her BP is stable,
her blood volume is good, her lungs sound great and
her secretions have thinned out and cleared up.
Today the goal is to get her body rested and ready
for bi-pap. They will be able to give her higher
doses of pain meds as needed and keep her well
sedated today since she is maintaining her BP. (For
those that have asked we are at the American Family
Children's Hospital in Madison in the PICU)
July 2, 2009...Reagan's
surgery went very well. I carried her into the OR
at about 7:40 this morning and they finished up with
the procedure around 2:30. Dr. McCarthy was able to
not only get her spine straightened out buy also get
her hips/pelvis square with her shoulders. As to be
expected there was a bit of blood loss that needed
to be replenished and Reagan remains intubated until
the doctors decide she ready for her home bi-pap.
We met Reagan in her PICU room following surgery and
boy was it a flurry of activity. Joe and I just
wanted to give her a kiss but there were four
nurses, the anesthesiologist and the resident all
bedside hooking up lines and checking vitals... We
were finally able to make our way to her about 30
minutes later. She was heavily sedated, but they
said we would be able to recognize pain if her blood
pressure or heart rate increased and they would
medicate her accordingly. Things were initially
going okay then her BP climbed, they had to give her
a few different types of medication to help the
pain. It took awhile but they finally got her pain
under control, however her BP started to drop pretty
low. We had to hold off on some of the pain meds to
get her BP back up, but then she came to and that
wasn't good either...needless to say it has taken
all night and into Friday morning to get everything
figured out. Respiratory is doing IPV treatments
along with the Cough Assist and suctioning every 2-4
hours to keep the lungs clear. Our nurses Jenna and
Amanda are awesome, they have been going non stop
with Reagan since she came to the floor. Of course
Dr. Schroth is keeping a close eye on our girl and
making sure she is being well cared for. Thanks to
Dr. McCarthy and the surgical team for taking such
good care of our little peanut! Thanks MJ and
Brenda for the balloons and elephant and thinking of
Reagan always! And of course Uncle Josh,
for getting the website running again. Please also
keep Reagan's SMA pal Jerkia in your thoughts
tomorrow as Dr. McCarthy is doing the same surgery
on her.
July 2, 2009...Reagan
was up at 6:00 this morning. She slept pretty well,
all things considered. Unfortunately her IV was
leaking TPN right before they took her off for
surgery, so they had to pull that line and will just
start a new once she is out. Reagan got to watch
Special Agent Oso in pre-op and chose grape scented
NO2. I got to take her into the OR and wait with
her until she was sleeping.
July 1, 2009....Reagan
was admitted for all her pre-op and to get her
nutrition going. The IV went in very easily and all
is well. Reagan is in very good spirits and enjoying
the shopping cart of play food they brought in to
play with. I forgot her g-tube extension and we
didn't realize this until 8:45, but thankfully Uncle
Josh met Daddy half way with one! What a guy:)
FSMA Conference
6.24.09...entry from mom
We just got home
from the FSMA Conference in Cincinnati, OH. This was Reagan's
first conference (Joe and I went to our first in Chicago two years ago).
We had a nice time together. Reagan enjoyed meeting new friends
and having a three night slumber party at the Hyatt and going to a
banquet and carnival. It was fun meeting a lot of the other SMA
families I chat with online. Click
here to read about the latest news on
drug discovery for the treatment of SMA.
Unfortunately our
weekend came to a sad end when we got home and discover water in the
basement. Josh, my dad, Joe and I moved all of the furniture out
got the wet vac going and sadly ripped out the floor. I guess it
could always be worse! The basement is all dried out now and down
to the concrete floor.
We have been
enjoying the nice warm weather this week and relaxing in the pool.
Reagan has had a fantastic week at therapy; on Monday in OT she ate 10
bites of banana with a fork and 10 bite of yogurt with a spoon all by
herself; on Tuesday she tried a new food and ate at a good rate with
minimal gagging, and today in PT Reagan rolled down the wedge like a
champ all by herself:)
Tomorrow we are
planning on taking Reagan to the Brewers game and do some tailgating
then off to Summerfest fireworks. We are trying to have lots of
fun before Reagan's surgery!
End of the
school year 6.11.09...entry from mom
I can't believe it
is the end of the school year. Reagan has certainly grown and had
a great time this year. She loves all of her teachers and
therapists and friends at Glen Park. Yesterday was the EC class
program for the parents, they sang and we enjoyed cookies and punch all
together.
Tomorrow Reagan has
her 4 year check up with Dr. Dan...I'm sure it will be uneventful as
Reagan is doing very well! Saturday we have Emma's birthday party
to go to and hopefully it will be warm so they kids can play in the
pool! We are three weeks out from Reagan's surgery and will be
enjoying a trip to the FSMA conference in Cincinnati next week.
This will be Joe and mines second conference and Reagan's first. I
was telling her about it and how there will be lots of other kiddos with
SMA there driving their own wheel chairs and wow is she excited to meet
them. I was talking with Reagan's teacher yesterday and she told
me how Reagan was telling her they were going to have wheelchair
races...first I have heard of it, but too cute!
Congrats to my
friend Anna and her husband Joe, they just had their first baby, a girl,
Isabella. Uncle Mike and Auntie April are having a baby girl in
December, my cousin Eric and his wife Carrie are having a little girl
and our friends Amie and Andy are having a girl next month, and Joe's
friend Brett and his wife Amy ....lots of
babies!
This past Sunday we
had a zoo outing with some of Joe's old teammates from UW-O and then
came back to our place for lunch. The guys watched the 'Crew and
the girls took the kids outside to play t-ball and bubbles and chalk and
whatever else they could find to do. Last Friday Reagan had her
first 4-year old zoo class, and was excited to be reunited with
Alexandra once again. After class they managed to get a train
ride, a carousel ride, and ice cream from Bethanne and myself.
Then they played so long that we closed the zoo down. The day
before that, Thursday, Reagan had a play date with Benny. We went
swimming at the YMCA the Angie and I took them out for pizza and then
ice cream after that. The next thing I knew it was after 8:00.
Tuesday Reagan helped out at a MDA Lock-up at Texas Roadhouse in
Waukesha and was on the news. She really gets a kick out of seeing
herself on tv. Such a busy little girl!
Potty Time
6.1.09...entry from mom
Reagan has been
patiently waiting for her special potty chair that we ordered in
February. To make a long story short, Reagan needs a lot of
support for her body so she can void her bladder and a regular kid's
potty chair just doesn't work...so we ordered a special, super expensive
one that is still in the process of being approved by insurance...Reagan
really wants to be a big girl and go on the big potty. So I went
and bought a ring reduced and a stool. After school today Reagan
told me she had to go potty and wanted to try on the big potty. I
excitedly got things all set and sat her down and held her in place and
tried to align her back best I could. After about 30 seconds all
of a sudden I heard a little tinkle and Reagan face just lit with a big
smile and she started yelling "I'm peeing!" She stayed dry and
went on the potty five more times. She was telling anyone that
would listen the rest of the day about her new accomplishment and when Grammie came by she showed her the princess undies she had on! I
am so proud of the little peanut.
Mary Poppins
5.25.09...entry from mom
For Reagan's
birthday present Joe and I got tickets to the Broadway in Chicago
production of Mary Poppins, and boy did she love it! She sat
through the entire almost 3 hour performance with her eyes glued to the
stage.
Walk with the
Animals, Music and Cake 5.20.09...entry from mom
We had another
great day for Walk with the Animals, a windy and bit chilly start, but
beautiful day none the less. Our fantastic family and wonderful
friends joined us to celebrate Reagan's 4th birthday at the Zoo and we
were one of the top 3 teams at the Walk. Reagan was even
interviewed up on stage by Emily from CBS 58 about why she likes to
participate in the Walk, and of course Reagan wasn't shy. After
the Walk at the zoo everyone came over to the house and Reagan's music
teacher Miss Sarah sang and danced with the kiddos. It was lots of
fun to see them all dancing and playing different instruments.
Reagan really seemed to enjoy her Littlest Pet Shop cake, frosting and
all! Thanks to all of our family and friends who celebrated with
us:)
Brewers Game 5.13.09...entry from mom
What a busy
Tuesday, school, speech therapy, pool therapy, crafty class and a
Brewers game. I have to say I was a bit concerned that it would be
too much for Reagan to do in one day, but she had a great time and LOVED
the Brewers game. They hit four home runs and Reagan told me it
was because it was her fourth birthday. Joe took her to the game
all by himself and they got nachos and stayed for the Sausage Race and
of course got to see Bernie Brewer slide down his slide. She even
said to Joe that she wants to go with him to tonight's game!
Some one is 4 years old!
5.11.09...entry from mom
I can hardly believe
how fast out little pumpkin is growing up. This morning when she
woke up she yelled "mommy, daddy, I'm 4 now!" She had a special
birthday cookie for breakfast and brought Bug Bites for a treat to share
with her class. Of course it was "Happy Meal Monday" and I
couldn't turn down the birthday girl, so she chowed down her chicken
nuggets and then we were off to OT. For dinner we took her to
Stone Fire Pizza and watched Madagascar and played games and ended the
day with cake. When we were putting her to bed, she told us it was
her best birthday ever and that she can't wait for her party on
Saturday:)
MDA Black and
Blue Ball 5.2.09...entry from mom
Last night we
attended our first MDA Black and Blue Ball. It was an outstanding
event and we meet a number of other great MDA families. Reagan made a
new friend, Allie. They palled around all night, got tattoos,
played with the cute little puppies, danced, sang, and were just silly.
It was a long event, but Reagan did great and made it until 9:30. We were all decked out in our new Harley Davidson
shirts, Reagan's was purple of course. She even made some art work
for the auction that went for $250.
Serial Casting
Again 4.29.09...entry from mom
Today Reagan began
serial casting for her left leg. We are hoping it will only take
3-4 weeks to work and get her range back. She did really well
getting it put on and most of the afternoon. Tonight has been
rough so far though...I think I blocked out how it is the first 2-3 days
each week.
On a funnier note,
Joe and I got home from our long weekend in Las Vegas last night.
Reagan was so happy to see us and after about five minutes of hugs asked
what we got her. When Joe pulled out the bag that had a $30
Beatles LOVE shirt in it and all she said "I want a toy." Also in
the bag was a streamer that had fallen down from the ceiling at the end
of the performance and I just happened to put it in the bag...that is
what she has been playing with since. She thinks it is great!
When are we going to learn?!
Special thank you
to Grandmie and Grandpie Larson for taking such great care of Reagan
while we got away for some R&R!
First week with
4 days of school 4.2409...entry from mom
We had quite the
busy week! It started off with a visit from Emma, Sara, Chad and
Auntie Jeannie. Emma had her tear duct cleaned Tuesday morning and
the we picked Reagan up from school and all went to Stone Fire Pizza for
lunch and lots of fun. Both of the girls were exhausted by about
1:30 and napped really well needless to say. This week at crafty
class was a Barn Animal theme, which Reagan enjoyed. She made a
really cute little lamb mask. Reagan also went to school for four
days this week (first time) and enjoyed it tremendously:) This
morning Reagan had swim then we packed a picnic lunch and met Daddy at
the zoo to enjoy the beautiful day. After lunch Joe took Reagan to
her Elephant Zoo Class, which I heard was a blast. Now Joe and I
are getting ready for a long weekend in Las Vegas! Grammie and
Grandpie Larson are coming to our house to watch Reagan while we are
away.
On a side
note...Reagan's spine surgery has been scheduled for July 2.
Spring Break!
4.13.09....entry from mom
Wow, has time flown
by, I didn't realize it had been so long since an update. We have
a new pet in our house thanks to Auntie Nicole! It's a Beta fish
name Purpley. Reagan loves feeding it and Rajah loves to stare at
it so we moved Purpley up to the mantel.
Reagan's IEP was
last week...she will be going to school 4 mornings for the remainder of
the school year and next year she will go all five mornings.
Reagan's teachers and school therapists are all outstanding and she is
really excited to go to school more! I have to do some reshuffling
of Reagan's therapy with Anne, Donna, Bethanne and Sue, but that
shouldn't be to problematic. Last Thursday was Reagan's last Music
Class with Miss Sarah...so sad, we have been going to that class since
Reagan was 1 1/2.
On the 10th Reagan
saw Dr. Schroth for her quarterly check-in/RSV follow up. All is
well. Reagan surprised us all with a huge weight gain...2 lbs in
one month. She is now 29lbs and 13oz, just amazing. They are
guessing it has something to do with the TPN Reagan was given when in
the hospital, that the lipids helped Reagan's fatty acid levels and
voila...weight gain and an appetite:) Dr. Schroth was very happy
with how well Reagan was doing! Dr. McCarthy also stopped down
between surgeries to talk about scheduling Reagan's and take a look at
her knee. After some labs and x-rays we were on our way home.
Reagan fell asleep before we got out of Madison so we got to listen to
the Brewers home opener on the ride home!
Easter was fun.
We started out the morning with Reagan's Easter Basket and egg hunt,
then drove to Spring Green to meet Grandma Helga and Grandpa Pat and Oma
and Aunt Sophie for brunch. After brunch we went to Oma's for some
of her famous cake and Easter surprises. Then we headed to
Grandmie and Grandpee Larson's for Easter dinner. Needless to say
we were all ready for bed Sunday night:)
Happy Belated
Birthdays to Auntie Nicole, Auntie April and Uncle Mike and Great Aunt
Risa!
Back in the
swing 3.23.09...entry from mom
Today was Reagan's
first day back to school in almost a month. She was extremely
excited to see her friends and teachers and someone besides me I'm sure!
Mrs. Burnett said she had a great day and didn't miss a beat.
Reagan got a Happy Meal to celebrate and then we were off to NBT for OT
with Donna and Julie. Reagan did pretty well in OT, but you could
tell was fatigued. She then played, oh sorry, helped Anne do some
work afterwards. Too funny!
This past Friday
afternoon I took her to zoo class, Snakes and Chameleons. It was
her first time out of the house in ages it seemed. When I told her
to drive out to the van she told me that she was healthy and didn't have
any germs so we didn't need to go to the doctor:) She was thrilled
when we pulled into the zoo. She really liked Emily the boa.
All is Quiet on
the Imhoff Front 3.16.09...entry from mom
Reagan continues to
get better everyday. She has so much more energy and is tiring Joe
and I out:) Between egg and spoon races, tag, soccer, crafties,
baking, reading, playing board games and Littlest Pet Shop I'm having a
hard time keeping up with Reagan:) While we are homebound for
another week all of Reagan's therapist both at NBT and school are coming
for home visits, which will be so great for our social butterfly!
If she is really doing well, I may take her to her zoo class on Friday
afternoon...we'll see. Enjoy the beautiful weather!
Home sweet home
3.12.09...entry from mom
First off Happy
Birthday to Donna, Reagan's OT. We are all very tired but doing
well and soooooo happy to be home! Bethanne so kindly came by and
did some ribcage and respiratory work with Reagan this morning as well
as brought us some delicious homemade soup and salad:) After two
weeks of take out it was so nice to eat something homemade. Reagan
is quickly getting back to her old self. We watched Charlie and
Lola, made crafties and cookies and played restaurant. I was the
waitress and Reagan and Joe made menus and placed their order. It
was really cute because after Reagan had a bit to eat, she wanted her
and Joe to take my order. It all came about because Reagan wanted
to go out for dinner and was sad when we told her that she has to stay
at home for another week. Uncle Josh arrived as I was placing my
order and Reagan quickly told Uncle Josh it was his turn to order.
She is sleeping very well and her stats look great. We also got
her up in her stander today and she did outstanding! She is an
amazing little girl!
Going home!
3.11.09...entry from mom
We
got the green light this morning.
Reagan just told all of us that she is the “best,
luckiest person in the whole wide world”…because we are
finally going home! They are even trying to fast track
things so we can be out of here by noon! Dr. Tippitz
told Reagan that when the big hand and the little are
both on 12 she can go home and she just stared at the
clock then yelled it’s on 12 (it was the second hand)!
She has just been singing and silly with everyone
since. Dr. Jennifer said that Reagan sounded like a
whole new woman, and Reagan said I’m a little girl!
Reagan is still sick, but she is at a place that we can
manage her care from home. We will continue to do her
breathing treatments four times a day and have follow-up
with the Drs in coming weeks. She is pretty much
homebound until she is 100%. They also cautioned that
she will physically be weaker and that will take some
time. None the less we are going home and Reagan is
going to be all good!
3.11.09...Happy Birthday
Grandpee Larson & Happy Anniversary Grandmee and Grandpee Larson
A bit of
pampering for Reagan 3.9.09...entry from mom
Today Reagan got
her nails and hair done:) Claude, one of our fantastic nurses,
called a lady who comes to the hospital to do things like this for the
kids. It's called the Positive Image Center. Deb had cute
little Strawberry Shortcake hair ties and Lindsey (our morning nurse)
got Child Life to get some purple nail polish to top everything off!
Reagan certainly enjoyed the entire experience and hammed it up big
time. She was upright for a good part of the day and did very
well. She played with the OT and had an excellent day all around.
We just increased her feed to 50ml/hr tonight and hope that tomorrow
night we can do a test run and have all go well and get discharged
Wednesday!
Monday Morning,
Day 8 3.9.09...entry from mom
Reagan had a good weekend for the most part. Last night she
was her talkative self for about an hour or so and was being
very silly…so nice to see! Her lungs are sounding better
and she is at Q4, which is nice so she can get more rest.
She is on her home bipap machine and mask, so we can check
that one off the list of things to accomplish so we can go
home! I think they will be playing around with her settings
even once we go home. We are still working on getting her
tummy up and running. We have been able to increase her
feeds to 35ml/hr. The goal is to get her to tolerate her
usual rate and feed at home, which is 75ml/hr. She will
have to do a full 3 can night feed here before we can go
home. We are being optimistic and hoping that we will get
to leave Wednesday.
Saturday Update
3.7.09...entry from mom
Today has been a
long day. Reagan is very tired and having a hard time with her
coughing and keeping her stats consistent. Dr. Schroth added
Zithromax to Reagan's medications to help with the inflammation in her
lungs. We are working at trying to get her feed to 20 ml/hr, and
have been successful for the most part. She is now on Pulmonary
service with Dr. Schroth now, so that is good news. Last
night when Dr. Schroth came to visit us she showed us all of Reagan's
chest x-rays and explained what we were looking at and what it meant.
It is nice to have a better understanding of what is going on and where.
Hopefully tonight will be a good night and she'll be feeling better
tomorrow!
Friday Update
3.6.09...entry from mom
Reagan had a productive night. She was able to move a lot
of secretions out and her morning x-ray looked “slightly”
better. She is still Q3, but they are talking about
possibly trying Q4 later today. The other GREAT news is
they are talking about moving her from the PICU to pulmonary
services! Taking a step closer to the front doors! Her
tummy is still sensitive and we had to move her feed rate
back down to 10 ml/hr, but we are going to try and bump it
up to 13ml/hr this afternoon if she does better tolerating
her feed this morning.
She’s watching Dora’s Pirate Adventure and trying to sing as
I’m typing this. She also has been having fun putting
stickers on her treatment chart and reminded Tom that he
forgot a sticker for her last treatment!
Thursday
Update 3.5.09...entry from mom
Today has been a very good day so far. Reagan was able
to come off her mask for awhile and did well until we
moved her. They have switched her breathing treatments
to Q3(every 3 hours) and she appears to be tolerating
her feeds now. We were able to bump it up to 15ml/hr
and I don’t think I’ve ever been more excited to see a
poopy diaper! She has been more interactive today as
well and that did us all good to see. She even was
getting a bit feisty during some of her breathing
treatments and asked to play with some of the toys child
life brought in:) Dr. Schroth did caution us that this
will take time and she will have good days and bad
moments, it’s just part of RSV. We are just very happy
to be having a good day.
I’m going to try and catch some zzz’s while Reagan is.
MJ and Brenda thank you so much for the balloons and
stuffed animal. Reagan named him Stretchy and
asked us if she could go bouncing on the balloons like
Charlie and Lola!
Wednesday Update
3.4.09...entry from mom
Sorry for the late update…it has been a long day. She
is still having to have O2 bled in through her bipap and
is still on the full mask. We did try to go back to her
regular mask she wears at home, but were unsuccessful
with that. It is more a matter of her nose being so
plugged up than anything. Her potassium is still a
little low, but better than the day before:) Today’s
x-ray showed all of the pneumonia. As the doctors
explained to us it has “blossomed” now that she has
fluids in her. It is not necessarily a bad thing, now
at least they can see what they are dealing with and
where all of the trouble is located. The big event for
the day was the placing of the PICC line. It is a
central line located in her upper arm that is able to
handle and do much more than an IV in your hand would
(they call that a periphery line). The potassium and
TPN that Reagan needs doesn’t “jive well,” so to speak,
with the periphery line because that vein in your hand
is so small and much more sensitive. Yesterday when
they started the Potassium it was painful for Reagan and
they had to slow it down twice to get it so it was
comfortable. The TPN is made by the pharmacy and
it will meet Reagan’s total nutritional requirement (carbs,
proteins, lipids, vitamins, minerals, etc. With the PICC
line they are able to administer such things at a full
strength and it will not hurt her in any way, another
bonus of it is they can do most blood draws from this
line and she won’t have to be poked as much. It
took about 45 minutes to get it placed; they did numb
the area so that helped. Reagan, being the tough
kiddo she is, did very well with it. They use
Doppler to find the vein and the mark and place it and
the run the cath. Once they have it done they do a
chest/neck x-ray to make sure it is where it is suppose
to be. Once the docs said she was good to go they
switched to the PICC and removed the IV from
her hand! We are also trying to get her tube feeds
going again at a
rate of 10ml/hr along her the Zofran…so far so good. We
have tried a few times today to go without her mask to
give her face/skin a rest and she seems to be able to
keep it off a bit longer each time…this last time we had
it off for about 5 minutes and she kept her O2 above 90,
well at 90 on the head, but 90 none the less. The
doctors think we will be in the PICU for another couple
days and then hopefully be able to transfer to the
pulmonary service once Reagan is able to go four hour
between breathing treatments as well as 4 hours without
her bipap while maintaining her O2.
Thanks for all the well wishes and prayers, we really
appreciate it! And thanks to the Mlenars for the
bag of goodies for Reagan that was delivered this
afternoon. It was perfect timing because the OT
had just come in and it was a great activity for Reagan
to pull the books and toys out of the bag. She
can't wait to play with the Pretty Princess book!
RSV
3.3.09...entry from mom
Reagan had a pretty
good morning. Her stats were good, her fever was gone and she was
responding well to her respiratory therapy treatments. They even stopped
the oxygen and had her on room air while on her bipap full time.
She did well for awhile. They did a nose swab and tested for RSV,
which came back positive. So, now at least we know what is going
on. We tried doing a very slow feed, only 10ml/hr, but she didn't
respond well to it. The are going to give her some nutrition, TPN,
through her IV tonight and they also had to give her some potassium
since her levels were low. They will then check her blood sugar
every four hours to make sure things are okay. Hopefully once that works it's way
through her system she will have some strength to kick this crap.
They did have to put her back on oxygen around 6:30 and she is still on
it. Tom, the respiratory therapist is here now to do Reagan's next
treatment. She will still be getting it every two hours until she
can get off the oxygen and maintain her stats. Again we will do
our best to keep Reagan's Journal updated! Thanks for all of the
emails and messages. We have been reading them to Reagan and they
make her happy to hear from you all:)
In the PICU
3.3.09...entry from mom
Yesterday morning
we took Reagan in to see Dr. Dan because she was still not feeling
better. He ended up sending Reagan to the ER to have IV fluids
administered and some more tests and x-rays done. It turns out
Reagan's lungs (which were crystal clear on Friday) are inflamed and
some areas are not working well so we were transported to Madison to be
under Dr. Schroth's care.
Dr. Schroth sent two of her
RT's to come and bring Reagan to Madison. It was a smooth ride and
Reagan slept most of the way and stated really well the entire time.
They had a room all ready and waiting for us and everyone was briefed
and the transition was smooth. However it wasn't long before
Reagan started having trouble breathing.
They got her respiratory rate and O2 stable around midnight.
Reagan is on a full mask (nose and mouth) bipap full time with 5.0L of
oxygen as well. They have her fully hydrated through an IV and are
hoping to give her some nutrition via IV since her tummy won’t tolerate
a feed. They are also giving her Zofram (sp?), it’s an anti nausea
medication, that is working well and has helped the retching subside.
She is Q2 right now, which means they come in every 2 hours and do a
breathing treatment, which takes about 40 minutes so we get to rest for
about 1 hour before the next one. They are hoping to be able to go to
Q3 or Q4 tonight so she can get some rest. Her fever seems to have
broke this morning (knock on wood). She just got done with her
treatment and is sleeping very nicely right now so I am going to go and
try and get some sleep. I will try and keep this updated:)
3.1.09...entry
from mom
Unfortunately
Reagan is still really ill. She's been on amoxicillin for 3 full
days and we haven't seen any improvement. She's very weak and has
been sleeping on and off all day long. If she doesn't turn the
corner tonight we'll give the doc's office a call in the morning and go
from there!
Jinxed
2.27.09...entry from mom
Turns out I spoke
to soon, we just got home from the doc's office and Reagan's throat is "flaming
red" and her white blood cells count is ridiculously high so they are
thinking she has strep, but we won't know for sure until tomorrow.
They started her on Amoxicillin anyway because whatever she has is
bacterial. Last night was just awful. The poor kiddo was
miserable with a fever and coughing and her poor little heart was
racing, I don't think it went under 165 all night and was near 180-200
for about 4 hours. Her lungs are crystal clear, so that is a huge
relief. Hopefully after her double dose today she'll be
feeling a millions times better tomorrow.
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