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Busy little girl
2.25.09...entry from mom
Reagan is doing
fantastic! She has been very healthy all winter long and sassy as
can be, but in a good way for the most part☺☺
Crafty class
on Tuesday nights are back in session and she has been enjoying them.
I think her favorite part is seeing her buddy Addison at class.
The week of Valentine's Day she painted this HUGE heart and told me that
is how much she loves me...awe. Last night Joe hurried home to
take her to class and the theme was mittens. What else...Reagan
has helped out MDA with kicking off their Shamrock campaign by going
around to the area Lowes with Michelle and handing out candy and
speaking with the managers. Of course Reagan took her passing out
candy job very seriously and I think all of the managers got about 5
pieces by the time we were done. The following week was the MDA
Lock-up in Pewaukee at BW3's and Reagan and I stopped by for pictures
with all of the jailbirds. It was a very successful event and busy
the entire 3 hours we were there. The Farleys had us over for
lunch last Sunday and Amie got Reagan these cute Strawberry Shortcake
books, one coloring and one sticker....they are still Reagan's favorites
a week later. Last Thursday was Reagan's Parent Teacher conference
which
also went well. I guess to sum it up she's smart and sassy, but
the sassy part only seems to be to mommy and daddy. Of course she
is near angelic for her teachers! Friday was pool therapy and zoo
class--Lion's! I know I'm biased, but Reagan really was the
absolute cutest Lion in the class:)
A Princess
Party 2.8.09...entry from mom
Today Reagan went
along as Leah's guest to Carthage College as the Chi Omega girls hosted
a Princess Party for Leah as part of her Make a Wish experience.
Leah wished for a trip to Disney World and will be going at the end of
the month with her parents:) The Chi Omega girls were so sweet to
Reagan and Leah, they certainly were spoiled and loved all day today.
We were greeted curbside and they had Leah's favorite Mac and Cheese for
lunch along with cupcakes and punch all ready for us when we arrived.
I think it took about 5 minutes for Reagan and Leah to warm up to the
girls. From the games and beauty salon to the gifts and attention
to the girls it was an
outstanding party.
2.4.09...entry
from mom
The Albuterol
syrup appears to be benefitting Reagan. The other day Reagan was
driving around, being silly singing and dancing and she got her arms up
almost over her head:) She also has much more energy during the
day and while she can't roll over (yet), she is able to roll onto her side.
She loves school and would probably go 7 days a week if she could.
Yesterday we saw an Orthopedic doc in Madison that Dr. Schroth referred
us to. The appointment went fine, Reagan was all chatty and had a
hard time sitting still, well, not so much sitting still as being quiet.
Her curve is now at 46°, which isn't awful, but obviously
not good. So we now have to decide when to do surgery, do we want
to do it now or wait and see and have her grow more and hope the curve
doesn't dramatically increase. With surgery they should be
able to improve the curve by 50%, and after the initial surgery she will
have one about every 6 months to have the growth rods lengthened.
When we go and see Dr. Schroth in April they are going to do another
x-ray to see where she is at, then Joe and I will go from there.
1.20.09...entry
from mom
Reagan has been
doing very well! She began her first dose of Albuterol Syrup yesterday
and did great. We have been staying warm and keeping busy with all
of Reagan's new toys and playing dress up. She has been so
interested in "organizing" her Little Pet Shop pets...by type, by color,
I'm sure today it will be by type and color. One afternoon we
turned the dining room table into Littlest Pet Shop "Plaza" as Reagan
called it and counted how many Littlest Pets she has...96. She
told her daddy and the first thing he said was that we need to go and
buy 4 more!
Back to school
and a visit with Dr. Schroth 1.8.09
Reagan started back
at school on Monday and could not have been more excited. She had
a great week and was happy to be back with her friends and teachers.
Today she had an appointment with Dr. Schroth in Madison. That
went great as well! As hectic and topsy-turvy the fall was
for Reagan, things are at such a good place right now and we are so happy
about that! We are going to give Albuterol syrup a try. It
does not have the side affects like VPA, and has shown some promise
in younger SMA kiddos, especially girls, in gaining some strength or at
least maintaining current abilities. We will keep our fingers
crossed and keep you posted. Tomorrow is Friday and Reagan will be
back at the pool with Sue and Leah, she is really excited about that as
well!
Beauty Salon
1.4.09...entry from mom
Tonight Reagan and
I played beauty salon, I painted her finger nails and toe nails and cut
her hair...yes, I chopped it off. Initially I did not mean for it
to be as short as it turned out to be, but hey, you try cutting
someone's hair when they have almost a 40° curve and can't sit up
straight for more than 30 seconds. I got it figured out with
daddy's help. It looks really cute and she seems to be loving it.
She keeps shaking her head side to side...beautiful!
We wish you
all a happy and healthy 2009...hope for cure!
Thanking the
Brookfield Fire Departments 12.29.08...entry from mom
Our local MDA asked
if Reagan and I would mind bringing goodies over to the three Brookfield
Fire Departments as thanks for all they do to support and raising funds
for MDA during the year...especially the "Fill the Boot." Reagan
had a great time going to the fire houses and saying hi. At the
Fire Station on Lily Rd. Reagan had the best time zooming around and
singing for the guys their.
Wonderful
Christmas 12.28.08...entry from mom
We all had a
wonderful Christmas this year. Reagan was spoiled and pretty much
got all of the toys she wanted between what Santa brought and family got
her. Reagan got her number one wish...a dollhouse along with the
furnishings. As well as too many other gifts to even begin
listing. It was funny on Christmas morning when she was opening
gifts and would open up a box with clothes in it, she would just mumble
thanks and immediately put it to the side waiting for the next gift to
open. We had a nice low key day, and have been very blessed to
healthy and happy this holiday season.
Waiting for
Santa 12.22.08...entry from mom
Last week started
out with great news, Reagan is all done with serial casting! Last
Monday after school I took Reagan's casts off for the last time ever
(hopefully) and we headed to Hanger and Jim had Reagan's new AFO's all
ready and waiting for her. She was so excited, they are light
purple with butterflies, and fit her perfectly. He also had
Reagan's new TLSO ready for her first fitting, he only has a few
adjustments to make and we should have it very soon. Wednesday was
Reagan's class gingerbread party and all of the parents were invited.
The kids sang two songs and then we made milk cartons into gingerbread
houses...what a great idea! Reagan and Joe made one together, with
a ramp up to the house and all. Seriously, Joe thought they were
done and asked Reagan if the house needed anything else and she said
yes, a ramp. Then on Thursday the snow came, and came and
came...finally Friday late afternoon we started to dig out. Reagan
was so excited to see all of the snow and couldn't wait to get out and
play. We made snow angels and went sledding. She looked like
Randy (A Christmas Story) in all of her snow gear, and really couldn't
put her arms down. She is such a little peanut when I laid her
down in the snow to make he snow angel she barely made an indent and was
all sad when I picked her up to look at her angel. So, we tried it
again and I kind of dug her arms and legs in this time...she was very
excited about her second try:) On Saturday Joe, Josh, Reagan and I
tried to brave the stores between snow storms to finish up with last
minute gifts...yikes! We managed to get out of Best Buy in one
piece and Reagan was able to sucker Daddy into getting a new Wii
game...Littlest Pet Shop...and playing as soon as we got home!
Now it is bitterly
cold and they are forecasting another 3-7 inches tomorrow. As long
as Santa can make it through we'll be happy. We hope you all have
safe travels and a wonderful holiday.
A long overdue
update! 12.14.08...entry from mom
I'm not sure where
to start, things have been busy. I'll try and keep it concise.
Thanksgiving was nice, Reagan even tried a bite of turkey and some
mashed potatoes, we were so proud of her. She did struggle with
them, but worked it out and swallowed all of her food. Speaking of
swallowing, her results came back from the Swallow Study and she is
doing just fine and can continue eating by mouth!
We celebrated my
31st birthday (yikes) Leah's 3rd birthday, Uncle Ryan's 25th birthday
and Evan's 2nd birthday...parties and cake all the way around!
Reagan had a great time at Leah's party. It was so funny to see
them wheel around and have their girls only powwow in Leah's room.
At Evan's birthday party this past weekend Reagan loved seeing all of
her family and playing with her cousins.
The serial casting
has been difficult at times, but has really paid off. On November
23rd Reagan was able to get up in her stander for the first time since
August! She stood for about 15 minutes and was in some pain, but
has since worked up to almost an hour, no problem. The got her new
big muscle (TLSO) and we have had some issues with it, so to make a LONG
story short, she was fitted for a new one last Monday and it should be
ready soon. In early November Anne asked if we could bring Reagan
to be a "demonstrator" for a course by
Mary Massery that NBT was hosting at Marquette. It was
awesome! Reagan was really cooperative and a good sport and Joe
and I along with all of Reagan's therapists (Anne, Bethanne, and Donna)
got a lot of good new stuff from Mary. It was in this session that
we were able to pinpoint the issues with Reagan's TLSO to have them
corrected.
Reagan has really
enjoyed the snow and had the best time picking out our Christmas tree
this year. She couldn't wait to get home and decorate it and fill
the advent calendar with chocolates. St. Nick was good to Reagan
as well, she got a big bucket of play food and a My Little Pony advent
calendar. Every morning she wakes up and that is the first thing
she asks to do..."do you think it's going to be a pony or accessory" she
says. We also began making our cookies and candies this past
weekend. Reagan got more flour and powdered sugar on the floor and
her wheelchair than in the bowl.
Tomorrow should be
the final day of Reagan's casts. After school she has OT and then
we'll cut it off and head to Hanger to pick up Reagan's new AFO's...purple
with butterflies!
A new cast 11.2.08...entry from
mom
Tuesday, Wednesday and Thursday
nights were very rough for Reagan. She was in a lot of pain and
discomfort in her new casts. Her right leg/knee was really
bothering her, so much so that her pain meds didn't help for more than
an hour or two. Finally Thursday afternoon I took her back to NBT
and Anne recasted her leg. It's Sunday and Reagan is doing so much
better, and finally getting some sleep! We had a really nice,
relaxing family weekend of hanging around the house...it was awesome!
Monday I have the volleyball banquet and Thursday Reagan has her Swallow
Study, other than that it should be a nice quite, getting back to the
usual routine kind of week!!!!!!!!!!!!!!!!!!!
Casting Round Two
10.28.08...entry from mom
Reagan got her second cast put on
this afternoon, and guess what color she picked? Pink? She
is branching out, what can I say. She didn't even want purple, and
for next week she already picked out blue. The great news is Anne
was able to get her legs 10°
straighter! We also stopped the VPA and Reagan is doing much, much
better. She is back to her old self and it is so great to see.
She had another great week at school and my back is doing so much
better, thanks for the get better emails:) Tomorrow we will be
heading to Kimberly for Grandma Roemer's funeral.
Party Girl 10.26.08...entry from
mom
Reagan was a busy party girl this
past weekend. On Friday Daddy and Uncle Josh took her to the
Halloween Party at NBT where she met up with Leah and Benny. They
were so cute in their costumes! Reagan got to dance and even had a
cookie with purple frosting. Saturday morning we went to
Alexandra's 4th birthday party at the Betty Brinn Children's
Museum...again lots of fun! Reagan got to dance and do the music
for the puppet show and be a princess in a play and make a cool
kaleidoscope drawing on the computer and make some crafties! What
a great party:) On Sunday our neighborhood had trick-or-treating
so off we went. We made it to the first house and it started
sleeting/snowing...seriously. Needless to say it was a very short
lived outing. We stopped by Grandmie and Grandpie Larson's for
some M&M's and then came back home and helped hand out candy to the
other trick-or-treaters.
Grandma Roemer March 17,
1923-October 23, 2008...entry from mom
Today my
Grandma Roemer passed away and is now
at peace. My mom, Reagan and I met my Aunt Jeannie and visited
with Grandma early in the day at St. Paul's. All though she
couldn't talk with us I know she heard us and just loved listening to
Reagan sing to her and enjoyed the pretty picture that Reagan drew for
her. We left late afternoon and minutes after we walked in the
door my mom's ceel phone rang, it was Aunt Jeannie telling us Grandma
just passed away. We love you Grandma.
A weekend with the girls
10.19.08...entry from mom
This past weekend, Joe, Josh and I
were suppose to be going to Las Vegas to see Jimmy Buffett.
Unfortunately about two hours before we were going to leave for the
airport I threw my back out while trying to transfer Reagan from her
wheelchair to the changing table. Needless to say I couldn't move
let alone get on an airplane. I gave my ticket to my dad and my
mom stayed with Reagan and I and took care of the both of us for the
weekend. Reagan did a great job helping take care of me all
weekend, she told me not to worry she'd call Dr. Dan and he'd take care
of my back. Love her!
What is Reagan going to be for Halloween 10.13.08...entry from mom
Last
Thursday Reagan saw Dr. Schroth for her 3 month check in. Dr. S
didn't really like the look and sound of Reagan so we are still working
on what is causing this almost constant illness. Unfortunately her
cough is coming back and she just is having a hard time getting back to
her usual self. Reagan had a variety of labs done this morning,
and all of the results have come back normal. Tomorrow she goes in
for an Upper GI and she will have her Swallow Study in two and a half
weeks. In the meantime she was started on another round of
antibiotics to try and knock the "yuckies" out. She is on and
off with a fever, but Motrin seems to be helping to keep it under
control. Her legs have been bothering her, so I am really hoping
the serial casting will so the trick. I know it will take some
time and may hurt a bit on the way, but in the long run I hope it will
be for the best. Despite it all Reagan is such a wonderful little
peanut. She had a great morning at school and so much fun last
Friday at Bat Zoo Class with Alexandra. Now our big dilemma is
what Reagan's going
to settle on for her Halloween costume? So far it has ranged from
a spider to a fairy to a fish to a witch and then a pumpkin? She's
three, what can I say:) We also want to wish Grandma Helga a very
happy birthday today, even though she said she stopped having them years
ago!
Back to school and getting into the swing of things 10.6.08...entry from
mom
Today
was Reagan's first day back to school and back to her routine. She
was so excited to go to school, she really does love it! After
school she had an appointment with Dr. Tassone, orthopedic, to check on
her back and legs. Sadly her curve has gone from 13°
to 35°. She was
immediately fitted for a new TLSO, and that should be ready in a few
weeks. Her legs are also very tight so she will be starting serial
casting next week, followed by serial bracing. Serial casting will
be a series of casting for both of Reagan's legs that will be for a few
weeks to help continuously, passively stretch Reagan's legs and
hopefully avoid anything more serious. She is such a tough kiddo,
I'm sure it won't phase her. I'm going to get some sparkles to rub
into the casts and that should make them super cool!
Happy Birthday Sophia and Elyse 10.5.08...entry from mom
Reagan
and I went to Sophia and Elyse's 5th birthday party today. They
wore their princess dresses and had a really cute princess cake.
Reagan had a fun time eating lunch and cake with the gang and watching
the girls open their presents. They both got a Baby Alive and
loved giving her a bottle and waiting for her to pee so they could
change her diaper. I think they went through all the diapers they
got before I even left:) Now Reagan wants one of course!
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