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Golf FORE a Cure weekend
8.3.08...entry from mom
What a beautiful day for golfing
with family and friends! It was a bit "sweaty" outside according
to Reagan, but it was a fun filled and very successful day. We we
very happy and honored to have four other SMA families join us at the
outing this year, it really made it quite special. Interestingly
enough the Reagan's Grandma and Grandpa Imhoff won the mixed flight and
Ben's Grandma Nelson was on the women's flight winning team and his
Grandpa Nelson was on the men's flight winning team. Reagan got a
chance to greet the golfers in the morning before they headed out to the
tees, I unfortunately missed it, but heard from numerous people that it
was really cute. Once dinner was wrapped up Reagan got back on the
mic and actually was the one to finally get everyone's attention so we
could begin the raffle and hand out the trophies after both the club pro
and I had tried several times. She really took to public speaking
and wanted to talk on the mic more and read off raffle ticket numbers
for me, for the sake of time I did it, but we let her thank everyone and
send them on their way. We are really lucky to have such
wonderful, supportive and generous family, friends and co-workers, thank
you, thank you, thank you for helping to find a cure!
On Saturday Reagan got to have a
sleepover with Grandma & Grandpa Larson while Joe and I headed to
Marshfield for Mike and April's engagement party. It was a fun
time. Sunday we made the trek back home and were happy to just all
crash and go to bed after the long weekend...and what a wonderful
weekend it was.
Busy, busy, busy 7.28.08...entry
from mom
We have been doing a lot of running
around getting ready for the outing this week. Reagan is doing
fantastic,. She did have a bit of a struggle with her blood work
this week. They had a difficult time finding a vein, but 15
minutes later she was as good to go as can be expected. Luckily I
had some M&M's in my purse to help her cheer up. She had some fun
play dates, one with her pal Megan and then cousin Steven and then
Cooper watched her Saturday afternoon. Tomorrow we should see
butterfly #4 hatch.
A weekend with Daddy
7.21.08...entry from mom
This past Friday I flew to New York
for April's shower and Reagan and Joe had a daddy-daughter weekend.
Reagan brought me to the airport and started crying the second I shut
the door, so sad. Joe said that she was fine by the time they hit
I-94. It sounds like they had a lot of fun playing My Little
Ponies and coloring. Joe even took Reagan to Toys R Us to get a
new My Littlest Pet Shop toy. Uncle Josh was also around to help.
Joe said that they watched the British Open and Reagan started cheering
for Tiger, since he wasn't golfing Joe had her rooting for Greg Norman.
I think she also got her fill of Wii. I had a fun time at April's
shower. Even though it was a quick weekend it was still so nice to
visit with Mike and April and meet her family. I flew home Sunday
afternoon and Reagan and Joe were waiting at the end of the concourse
for me. Reagan made me this really super cute card. I was so
happy to see my little peanut.
Only a week and a half until the
golf outing!
Happy Birthday Dear
Daddy...Happy Birthday to you! Love Reagan and Mommy
7.17.2008
Amsterdam and Butterflies
7.16.08...entry from mom
We have had a lot going the past
week and a half. Let's see the day we were leaving for Amsterdam I
went to clean out the butterfly house and add another stem of milkweed
for the week and noticed we had a teeny tiny new friend on one of the
leaves...another baby caterpillar! We all just laughed and Reagan
was ecstatic and barely even said good bye to us as we were leaving.
We had a nice time in Amsterdam,
Joe worked, but had two days to hang out check things out with Josh and
I. It was rainy and unseasonable cool for the majority of the
trip, but it was still nice to get out and about. We were lucky to
have a friend that lives in Amsterdam take us out two nights. We
met up with Kuna the first night we were there...it was so nice to have
someone that spoke Dutch that first night. Most people know
English, but the bar we ate at one had the menu in Dutch. We went
to museums and the Anne Frank house, The Hague, Delft, and walked and
walked.
Our friend Jenny, Katie's mom, made
Reagan this really cute bag for Reagan to hang on the side of her chair
to carry things around and easily access them herself. It's purple
gingham, totally Reagan!
Our first butterfly "hatched" while
we were gone. My mom and dad said Reagan was a bit unsure and
didn't want to hold him, she just wanted to look and let him be with his
friends outside. Caterpillar number 2 turned into a chrysalis
while during that time as well and he "hatched" this morning. Joe
was actually the first to notice him just coming out. Reagan
seemed pretty excited and loved the "beautiful butterfly." While
we played at the table she wanted all of her buddies to come play to, so
I brought over the butterfly house and she drew them pictures. We
took out Fuzzy, that's what she named the butterfly, why I don't know,
and then we took out the caterpillar, which she later named Stripey and
let them walk around on Reagan orange paper. She was still a bit
hesitant with Fuzzy, but really got a kick out of Stripey. Soon
after it was time to let Fuzzy go and make some friends. Now I'm
in getting ready of the outing mode.
Happy 4th of July 7.4.08...entry
from mom
We took Reagan to the New Berlin
Mini Parade at 9:30 and she had fun wheeling around her little chair.
Then daddy took her to the main parade and after about a half hour
Reagan wanted to go home...I think it was too warm for her. After
her nap Leah and Kate came over to watch the fireworks. Uncle Josh
entertained the troops until the main show at 10:00 the girls did a
pretty good job being up so late and they really seemed to enjoy the
show once it started!
Now we are getting ready for
another week...Joe and I along with Josh are going to Amsterdam this
week (Joe has work there) so Grandmee and Grandpee Larson are
coming to stay with Reagan for the week. I've been trying to get
things in line for the outing as much as possible...hey golfers sign up!
We hope you all had a wonderful 4th
of July weekend!
Some new pets 7.3.08...entry
from mom
This morning when we went to NBT
for OT Reagan had a really cool surprise waiting for her. Lois
(Greg's mom who gave us his stander) had two caterpillars and one
chrysalis for Reagan. She also made this awesome little story book
called "Reagan's Butterfly" that she personalized just for Reagan.
The story is too cute and tells the life and cycle of a Monarch
Butterfly named Tiny that Reagan cares for. I've lost count how
many times we have read the book. Lois took the time to walk us
through what to do and explained to Reagan what was going to happen,
Reagan was all smiles! I had to bring our new pets out to the car
so Reagan could get some OT done. Donna had to make some
adjustments to her wrist/hand splints to give her thumbs more support.
Then they made fireworks with glitter and glue, they turned out really
cute.
When we got home we brought the
caterpillars outside to check them out and put the big one in the house
with the chrysalis. Reagan finally was ready to go inside, but not
without her new friends. Once we got inside I asked her what she
wanted for lunch and she said she wanted leaves just like the
caterpillars, so I went and got a piece of lettuce. She took one
look at that and decided she'd have a pb&j sandwich instead:)
After lunch she showed her new friends how to play Little People and
then they all watched a show together. When it was nap time she
asked if they could come sleep with her and that is where I drew the
line...seriously!
When Reagan got up from her nap we
headed over to Ben's grandparents for a 4th of July celebration.
It was lots of fun. Reagan played with Benny in the pool and then
we got to all go on a fire truck ride. Reagan just LOVED it.
She waved and yelled "Happy 4th of July" as we drove around Menomonee
Falls. We had a great time!
Haircut and making jam with
Auntie Jeannie 7.1.08...entry from mom
Reagan got her hair trimmed with
Kelly this morning and was her usually cheese ball self! After
Kelly's we head over to Auntie Jeannie's for lunch and to help make her
famous jam. Reagan had so much fun and did a very nice job of
helping Auntie Jeannie every step of the way. Once Reagan had the
jam making ways under her belt we headed over to visit Grandma Roemer.
I think Grandma was happy to see us all, especially Reagan and Emma.
Sara and I were laughing at Reagan as she was cruising all around and
singing...such the show off!
Visit with Dr. Schroth
6.27.08...entry from mom
Today we braved the traffic on our
way to Madison to see Dr. Schroth for Reagan's 3-month appointment.
She did amazingly well...I don't want to jinx things, but she is so very
well and healthy right now it's awesome. We decided to start
Reagan on the VPA beginning Monday after Anne does a baseline
evaluation. Let's all keep our fingers crossed that this will work
for Reagan and help to to gain some strength in her trunk.
A flower girl 6.25.08...entry
from mom
This morning we went to David's
Bridal to get Reagan's dress for Uncle Mike and soon to be Auntie
April's wedding in September. Reagan is going to be the
flower girl, it makes me laugh just typing it. Anyway she tried on
the dress and really enjoyed checking herself out in the mirror, and was
beside herself when she saw multiple reflections of herself in her
princess dress smiling back at her. The ladies at David's were
just laughing and eating up every bit of my little ham. The best
was when she told us she looked gorgeous...I am not kidding. She
then went on to tell the ladies how it works being a flower girl and
showed them how she will "throw flowers so Auntie April can come follow
her." We are all in for a treat watching this flower girl.
April, are you sure about this?
Later in the afternoon Coop and
Peanut (former students/players/babysitters) came by to visit and bring
Reagan a birthday present that they brought back from Disney World just
for her. It is a big Dumbo holding onto a feather. Super
cute! Reagan had fun telling them stories and made them S'mores
and then we went outside to play hide and seek and have races.
When it was time for the girls to head out Reagan said, okay let's go
and tried to cross the street with them. 3 going on 21? I
was able to win her over with the promise of going to play Wii!
Who said video games were a bad thing?!
Pretty in Pink 6.19.08...entry
from mom
We are very appreciative of Lois and Greg Lucas for the
stander they gave to Reagan this week. Reagan has out grown the
first stander she used. It's hard to think when we first got that
one we had to use the hip belt as a chest harness because she was so
small...two years later her head is hanging off the top of it!
Greg is another one of Anne's friends she does therapy with and he has
since outgrown his stander and they so kindly gave it to us for Reagan.
She calls it her rainbow stander, because the pads are rainbow stripe
colored. It works great for Reagan and gives her knees more
support. Reagan also got a new pair of knee immobilizers that were
casted specifically for her legs and hope to be more effective.
On Tuesday we played beauty salon and Reagan got her very
first manicure. She picked out a very bright pink and I painted
her nails. She just loved it. She is such a girly girl
showing off her nails all day to anyone that would look. I caught
her a few times while she was playing watching her nails...too funny.
We also took a trip to the zoo with Grandmie and Grandpee Larson and got
to see the sting rays and go for a train ride.
This morning Reagan had music class
with Miss Sarah. I enrolled her with the older group and she did
great, wheeling around and singing and marching all by herself!
After music she had OT with Donna and got her new wrist/hand splints.
She will wear them on both hands to help keep her thumb and other
fingers from subluxing and keep her wrist in a neutral position. I
let her pick out what color she wanted and at first she said purple, but
when that wasn't an option she chose hot pink...and wow are they hot!
I was trying to persuade her to pick a white or nude color, but that's
not her style I guess. By chance she happened to have on bright
pink sandals, shorts and striped shirt along with her newly painted
nails. Add the hot pink braces and what a sight she
was!!!!!!!!!!!!!!
Champion swimmer 6.15.08...entry
from mom
The weather has been beautiful this
week...no rain so far! The adjuster came on Monday and
unfortunately our basement is not going to be covered. So after we
got the news I began sadly pulling up the floor that we just installed a
year ago and threw it in the garbage. We are still running the
dehumidifier and fans to get the floor bone dry before we do anything
else. It looks as though we are going to have to re grade the back
yard to make sure if the ridiculous amounts of rain we received ever
happens again it won't seep in through the floor. We've lived here
for going on 7 years and just finished off the basement because we never
had water and didn't think anything of it...oh well, I shouldn't
complain since Reagan is doing absolutely fantastic!
She is eating almost 3 entire meals
a day, snacking and only getting one can tube fed at night. She is
just amazing! Last Friday at swim therapy she seriously swam the
entire length of the pool all by herself. She wore a vest that has
neck/head support and Sue put a noodle under her bottom and let Reagan
at it. She is too cute, she swims like a froggy (check out the
pics in the
photo album), but
she did a length there and back all be herself with Leah, Kate, Sue and
I all cheering her on. Her smile was huge when she touched that
wall! I wanted to cry I was so proud of her. With all that
hard work she took at long nap that afternoon! Uncle Josh came and
watched Reagan on Sunday so Joe and I could go to the Brewers game with
Brett and Amy. We got to sit nine rows behind home plate, it was
awesome...thanks BD and Amy!
6.10.08...entry from mom
We have had a lot of things going
on lately. We are going to try out VPA, one of the drugs that is
showing some promise in kids with SMA. It is not a cure, but we
are hoping it will help Reagan possibly gain some strength or at least
help Reagan to maintain what strength she has. As with many drugs
there are side effects, so Reagan will have to have multiple blood draws
to check certain levels to make sure she is doing well on it. Last
Friday Reagan had to have her first blood draw after swimming. She
did really well, barely cried at all. Since she did so well I took
her to the zoo for a bit before we had to go see Dr. Dan for her 3 year
check up. The check up went well...she weighed in at 25 lbs 8 oz
and is 36 inches tall now! She just talked Dr. Dan's ear off and
gave him a hug when we were all done! She did have to get a shot
and really cried. I guess it hurt so bad that she told me she
couldn't drive her chair...she got the shot in her non-driving arm.
I just had to chuckle, since she did fine when they drew 5 vials of
blood, but a tiny shot was torture. She was fine once she got a
sticker. Friday night Reagan got to stay up late and hang out with
Grady and Andy and Amie. They were so cute. Reagan was
teaching him the ABC's and was trying to roll over by him.
Saturday we headed to the Appleton
area for Emma's first birthday party. Reagan was very excited to
sing to her and have cake. Emma certainly enjoyed eating her cake!
We got on the road and shortly there after the Joe called to let us know
the weather was very severe and to be careful. He called and
updated us every so often. It was a long ride home, but we made it
safely. Unfortunately once we got home and went downstairs to play
Princess Wii we discovered water and more water and more water. We
subsequently spent the next 4 hours mopping, toweling, and vacuuming up
water. My mom and dad came over and helped us out. Dad, Joe
and I cleaned up water and Mom took care of Reagan. Once we got
things under control they took Reagan for the night since it was still
coming down and we would be cleaning up late. Joe and I got up in
shifts to check on things and keep it as dry as possible. The next
morning we thought we were out of the woods and went to go and pick up
Reagan just to have the sky open up one again and dumped tons of water
on us...we quickly turned around to go home to find water in the
basement once again...this continued throughout the night. We are
very lucky to still have a roof over our head and the water out of the
basement. Watching the news and seeing how awful some others have
it is so sad.
Monday Reagan had her end of the
year program at school for the parents. It was really cute.
They sang us some songs and Miss Denise made a cool slide show, then we
shared snacks and chatted. Reagan really seems to be in her
element and just loves her class. Joe and I were excited to see
all of her little classmates that she talks about all of the time.
It is so awesome to see her so confident and independent!
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