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Time to relax and Reagan's first boat ride 10.1.08...entry from mom
As lovely and fun as a wedding is,
it is kind of nice when it is all over and you can just relax and enjoy,
and that is exactly what we all did the next couple of days. The
house was hopping and busy on Monday, lots of family and friends.
Reagan seemed to always have someone new to play with and show off all
of her Little Pets to. I think she got the biggest kick out of
playing with Abe, Mike's best man. Later on that night I decided
to get out her Mickey Fish Pond that I had just bought before we left
and told her it was for the trip. I pulled it out, put in the
batteries and nothing. April's brother, Marc, and Uncle Mike
figured out what was wrong and rewired it and got it running.
After about 45 minutes they got it working for Reagan. She was so
excited and played with it for a whopping 10 minutes, then she wanted to
watch Dora. Joe's Uncle Patrick and Marc just looked at each other
smiled and the games began. Next thing you know everyone is
standing around the table watching them play this fishing game...good
times!
Later that week the weather was
beautiful and Uncle Mike took us out on the boat for about an hour.
Reagan really enjoyed it and kept yelling to go faster, she even got to
sit and help Uncle Mike drive the boat. She played Table Tennis
and Pool and Foosball and painted and "did all kinds of stuff" as she
explained to me. Joe, Reagan and I took Mike and April out for
dinner, I think Reagan wanted to go more than any of us did. She
just wanted to eat chips and salsa and guacamole at the restaurant she
told us all day long. It was so nice being able to stay in the
guest house and spend time with everyone, we really had a great time.
The Rehearsal and Wedding
9.28.08...entry from mom
Saturday Joe, Reagan and I had to pick up a few last minute things for
Reagan and get Joe's tux before the rehearsal. Reagan didn't get
in much of a nap, but was still pretty good and lasted through the
dinner. She did a good job in rehearsal going down the aisle by
herself. Dinner was a bit challenging since she was getting
crabby, but I had picked up a Littlest Pet Shop earlier that day and was
saving it for just the right moment...it was right then and worked
wonders. Once the cake was served Reagan dug in and then it was
the sugar rush that kept her chasing Grandpa Imhoff and cruising around
and silly until we left. Finally the big day arrived, I felt like
I was going nonstop from the moment I got up, trying to get my hair
done, get Joe moving, get Reagan up and running and then getting us all
dressed and out the door in time for pictures. I spent about an
hour curling Reagan's hair...it looked so cute, unfortunately the
humidity won out and it feel by the time we started with pictures.
I think she looked adorable anyway with the rose hair piece April got
her. My mom had made a slip cover, so to speak, for Reagan's chair
to make it look nice for the wedding. When I put it on Reagan
called her chair a "carriage, just like for a princess." It really
made it look special. Pictures went well, but after a few dozen
this 3 year old was ready to move on to something else. The
wedding began shortly there after and Reagan did a great job and went
down the aisle all by herself. She didn't really smile, she just
had the shifty eyes, with the who are all these people? look on her
face. Everything looked beautiful...April and Mike, the ceremony,
just everything. While Mike and April were saying their vows a
Monarch butterfly flew right in the middle of the flower arrangement in
the front and Reagan was so excited, I had to sush her. Reagan
walked out with Grandma Helga and smiled on her way. The reception
was wonderful, more great food, lots of fun and dancing. Reagan
and April danced, oh, it was too cute! It seriously was the best
wedding I've ever been to!
Road Trip 9.25.08...entry from mom
We started our trip out to
Connecticut for the wedding a day later than planned so we drove
straight through. My mom and dad let us use their Garmin, it was
sooo helpful and made the trip much less stressful. We stopped
three times and seemed to time things perfectly as far as rush hour
traffic, however it was dark and rainy through the winding, up hill
roads of Pennsylvania. Unfortunately, Reagan didn't sleep very
much and got sick in the car. Her poor little tushy was really
sore, and we were all so happy to arrive at the lake house at 2:30am!
Mike was up and waiting for us and helped us get all of Reagan's
equipment in so we could get Reagan to bed quickly. Thankfully
Reagan slept in Friday morning so we could all catch up on our sleep.
Friday was a fun day, everyone was starting to arrive and Willy, April's
dad, made an awesome Italian dinner...WOW, I don't think I ever ate that
much pasta before. Reagan got Auntie April to give her a chocolate
ice cream cone and so generously shared it.
Home sweet home 9.21.08...entry from mom
We are all home and resting.
I always think it's funny that you go to the hospital to get better and
get rest, yet are so tired when you get home:) Reagan seems to be
doing much better and had a good night's rest. Hopefully she will
be 100% in no time and even make it to school this week. We are
planning on leaving Wednesday for the wedding!
MDA Lock-up and now in the hospital
9.18.08...entry from mom
Reagan had a great time at the MDA
Lock-up at the Claim Jumper in Brookfield Square. She was the "MDA
poster child" for the event so to speak. She took pictures with
all of the local business people that participated in the event...such a
cheese ball and trooper! We were there from 11-2:30 and she really
did well and "worked the room" with all of her smiles and cruising
around in her chair and story telling. Too funny! She also
was in the Waukesha Freeman with her dad from the Rally for Reagan event
at North the night before. (I am working on getting it scanned and up on
the website)
After our eighth lousy night of
sleep, coughing and alarming we went and visited with Dr. Dan and after
he consulted with Madison we decided it was best for Reagan to be
admitted. We are now in the PICU so they can keep an eye on Reagan
and help get rid of this yuckiness so we can get her up and running at
full speed again. She misses school and so desperately wants to go
to the wedding! She has the dress all picked out:) I on the
other hand... She is sleeping so very well right now, which is
awesome, I hope she has a great night and we get to go home soon.
Rally for Reagan at North 9.16.08 (entry from mom)
Reagan is still under the weather,
she is really having a tough time kicking this one. She stayed
home from school Monday and today, and we will keep her home tomorrow as
well. She has a very nasty cough and we definitely don't want to
spread this. This afternoon she was feeling better after Bethanne
came over to the house to work on her ribcage and then Anne came by and
we did some standing and stretching. Since she was seemingly up
for it Joe and Uncle Josh brought her to Waukesha North for the
volleyball game tonight because Cooper and Peanut were hosting a 'Rally
for Reagan' night. Reagan wanted to help me coach and was sad when
she couldn't sit by me during the game. During warm-ups I let her
come sit next to me for the first 6 minutes until our court time, then I
had Joe and come get her as I went out to toss to the girls and Reagan
just drove on out right behind me to help and cried and cried when Joe
came and got her. She did come and stand with us coaches for the
National Anthem that seemed to make her happy. Mid way through the
night Coop got Reagan on the microphone to thank everyone for coming and
then it was a big collective "awe" that I heard as I was handing in the
line-up. They raised over $500 for FSMA tonight...thanks to
everyone for supporting the event and a special thanks to Coop and
Peanut, we are so touched that you continue to think of Reagan and are
always there supporting her, as your ole coach and teacher I am so proud
of the young women you are.
Tomorrow if Reagan is feeling better we will be going to the Claim
Jumper for the MDA Lock-up that Reagan has been asked to be at!
Sick again 9.14.08 (entry from mom)
Reagan is under the weather once
again. We are glad it isn't anything too serious, just a viral
cold, but she was quite miserable last Thursday night and all day
Friday. We reluctantly left Reagan at home with Grandma Larson
Friday and went to the Sheppard's SMA Scramble for a Cure in Chilton
with Grandpa Larson and Uncle Josh. My mom and I were on the phone
every 45 minutes and just got to the point that I called into Dr. Dan's
office to see what to do at that point. It's hard to gauge things
when I'm not right there seeing her for myself, so after talking with
Dr. Dan we decided it would be best for him to just take a peak and make
sure things were fine. Joe, Josh and my dad quick jumped in the
car and left so Joe could take Reagan in. She seems to be in
better spirits today and hopefully will sleep well tonight. I'm
not looking forward to tomorrow when she finds out she isn't going to
school?!
A
former teammate of Joe's wife, Cathy, is coordinating the
Imagination
Station, a community built playground in Oconomowoc, that will be
universally accessible for ALL children to play shoulder to shoulder.
For more information about this awesome project please go to
www.oconomowocplayground.org
On a sad side note...One of
Reagan's favorite nurses and Dr. Schroth's SMA research coordinator,
Lisa P's husband unexpectedly passed away Friday night from a massive
stroke...our thoughts and prayers are with Lisa and her sons.
Play dates and parties 9.7.08 (entry from mom)
Reagan and I were certainly on the
go this past weekend. Friday was swimming in the morning a lunch
play date with Benny and a volleyball game in the evening. She did
fantastic at swim and had lots of fun zooming around with Benny and
throwing rocks and shooting hoops. Watching Ben and Reagan both
zoom around in their power chairs just made me smile:) Reagan and
I went to see Uncle Josh in action as the new SID at Alverno's
volleyball game. Reagan got M&M's and some popcorn to round off
the experience. Saturday we headed to Kimberly with Grandma and
Grandpa for a surprise Anniversary party for Aunt Jeannie and Uncle Dan.
It was at a park and Reagan got to play with her little cousins and run
the bases with Emma and swing with Evan and see Ariya's baby girl...just
a ton of fun all around. It didn't take long for her to crash on
the way home, even though she was adamant that she was not tired and did
not need a nap. I think Saturday night was the first night in a
month that she slept through the night, wow what a difference that made
for the both of us. Sunday was Grammie Larson's birthday and we
had a special birthday brunch at our place. It was great, Jackie,
Ryan and Josh took Reagan outside and played football with her so I
could quick get dressed and finish up with setting the table and icing
the cake. After brunch we watched Brett the Jet and then after
everyone left Reagan and I took a nap! Joe got home tonight from
his long weekend in New York and had dinner with Reagan and read her
some books for bed! Just a nice weekend!
First Day of School 2008, MDA Telethon and some new friends 9.2.08
(entry from mom)
We meet a new family, the Elsner's
this past weekend. They live near us and have two little girls,
one is Reagan's age and the other, Peyton who is 4 months old was just
diagnosed with SMA. They came over for dinner and brought Reagan a
really cute Disney Princess mirror set...of course she was all over
that. We got to play with baby Peyton and enjoy dinner. It's
hard to meet people under what are such sad circumstances but it nice to
have other families who are in that same boat so to speak, to talk with.
Jen, Peyton's mom, and I are going to get all of us girls together for a
play date soon!
Reagan also made her MDA Telethon
debut this past Labor Day! We were asked to come and present the
check from the money raised at the MDA Walk with the Animals this past
May. Reagan was in fine form and wasn't shy on set. They
brought us out on stage and got us set up and Reagan grabbed the mic and
sang a little "Twinkle, Twinkle" and thanked everyone for coming...
We are going to try and get the clip on the Home Movie web page this
weekend. I know, I know I need to put some recent videos on
their... I'll try and do that as well.
Reagan was so excited for school
she could hardly sleep last night. Of course that meant she could
also hardly get up this morning either. Joe and I took her to
school and she immediately drove right over to Mrs. Burnett and her
buddy Morgan. She barely even noticed Joe and I leaving, and we
had to go and get the kisses and hugs from her. Our last little
butterfly was all ready to come out so we brought him to school so
Reagan's classmates could see the butterfly come out of it's chrysalis,
which they did get to see. I think Tuesdays are going to be our
super busy day this year with school, PT, Speech, quick get over to
Grammie's so I can go to volleyball practice and then home for dinner
and bed...and in a few few weeks add crafty class with Daddy in there.
Reagan also got her very own t-shirt to wear at the North volleyball
games, it's just like the big girls! She wanted to wear it to bed
last night and everything.
Back at it 8.27.07 (entry from mom)
We are all back at it so to speak.
Things have been pretty busy at the Imhoff household. Last Monday
Reagan had her GI check in. She is 26lbs 4 oz and 36 inches tall.
She had fun with the nurse and nutritionist and read and played while
the other talked with me. Then we made a big paper pirate hat
before Dr. Biank came in. She had fun wearing it and arghing like
a pirate, then she played pirates with Dr. Biank for a bit and asked for
his stethoscope to listen to his breathing? She will need to have
a follow up Video Swallow Study to get some more info, but we are
waiting for the pneumonia to be long gone before we do that! I also
started volleyball last week back at Waukesha North. It is so fun
being back, and I am so lucky to be a part of an awesome coaching staff
and the girls are great as well. For the first week we had two a
days so Reagan pretty much spent her days with Grandma Larson getting
rest and back to herself. I have to say that I think working moms
and dads are just unbelievable. I was just coaching volleyball and
I was/am beat. To come home after a long day of work and have to
go right into mommy and daddy mode is tough. Now that Reagan is
feeling better we have managed to find time to get her school supplies.
She picked out all of her folders and her backpack all on her own...a
pink and purple Hello Kitty one! I actually had to put it in the
closet because every time she saw it she asked if it was time to go to
school yet!
Last Friday Reagan had to have a
blood draw for her VPA labs. When it was her turn we went back to
the room for the draw and I asked her if she wanted to sit on my lap for
it (like usual) and she said "no mommy, I'll just stay in my chair" very
matter of fact. She did let me hold her other hand, but I was
amazed how well she did, a little sad that she is growing up though.
Today we got to go to Glen Park and
meet with Mrs. Burnett and co. just for a refresher with venting Reagan
and such. Reagan was so excited to see Mrs. Burnett and everyone
else. She wheeled into her classroom and just seemed so
comfortable and happy to be back.
Just in...8.16.08
Thank you
all! We are excited to let you know that with your help and
contributions to Golf FORE a Cure 2008, we have raised and are donating
$25,000 for Spinal Muscular Atrophy research. In the past two
years since Reagan’s diagnosis, we have held three Rally for Reagan Golf
FORE a Cure events and a half dozen other Rally for Reagan events that
have raised well over $60,000 for FSMA, not to mention the countless
individual donations that have been made in honor of Reagan these past
two years. We are so very appreciative of your generosity and
support of Reagan and her fight against SMA!
|
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Thank you all for your support
and contributions to Golf FORE a Cure this year...
we raised $25,000 for FSMA and
Dr. Schroth's SMA research team/UW Pediatrics! |
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On the mend 8.16.08...entry from
mom
Reagan is doing much better as the
week has gone on. She is still coughing quite a bit, but it's a
good cough that is moving all of the yucky stuff up and out of her
lungs. She was singing the Dragon Tales song and her and Joe made
a tent out in the living room this morning. She is certainly
feeling so much better. She really wants to go to the "pizza
place" aka Stone Fire Pizza Co., and keeps telling me she is all better
and can go, but then starts coughing immediately. Too funny!
Once she's all better we will have to go and get her school supplies
because September will be here before we know it and she'll be back in
in Mrs. Burnett's classroom...oh, she can't wait!
Monday will be a big day for me,
volleyball starts! The new girls volleyball coach at North asked
if I could be her assistant. Joe and I talked with my mom and dad
and they kindly agreed to watch Reagan everyday after school while I go
to practice. I'm really excited to get back into the gym again:)
Reagan has come with me to a few open gyms and likes playing
"bolleyball" and the girls all thought she was really cute too!
Pneumonia in the summer?
8.12.08...entry from mom
Sunday Reagan and I went over to
Kate and Leah's for the afternoon to play and meet some of Leah's other
family. The kids had fun and it was too cute when Leah, Reagan and
Leah's cousin all laid down for a nap together...some napped more than
others (yours truly just wanted to keep watching Curious George)
Reagan was not going to nap and she was all set to wake up Leah so I
took her home for a nap, however, she fell asleep on the way home for a
whopping 10 minutes and I guess that was it for the day's nap.
Monday morning Reagan woke up with a slight cough and runny nose and
watery eyes. I thought it was just allergies so I coughed her and
suctioned her nose and went about our day with PT and shopping.
While we were out shopping she pretty much flopped over and said she
couldn't sit up. I tilted her chair back and drove it out to the
minivan for her. She fell asleep on the way home and by the time I
got her inside she had a fever of 102.9. I gave her some Motrin
and laid her down for a nap. When she woke up she seemed better
and had dinner with us. We turned on the Packer game and laid her
down on the couch with Grandpa while Grammie and I change the sheets on
her bed. In that 5 minutes she fell asleep again and was just
radiating heat...now a temperature of 103.9. Yikes! We kept
up with her cold time protocol and got through the night. Today
was up and down, but her fever never quite went away. I finally
called Dr. Dan's office after Reagan saw Bethanne. We went right
in and all of a sudden Reagan was clapping and singing and so excited to
see Dr. Dan. Unfortunately we found out she has pneumonia.
She is trying to rest and is on some strong antibiotics to kick this and
get better. Hopefully she'll be back to herself in no time!
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