|
Sleepless nights, 1 trip to the
ER, and 3 days in the hospital (4.22.07)...entry from mom
Actually this began on
Tuesday...Reagan was developing a bit of a cold but seemed her usual
happy self. She did well in PT with Anne that morning and actually
ate an okay lunch as well. Unfortunately by early evening things
took a turn. Reagan had a difficult time drinking her Pedi sure
and was beginning a cough. We gave her a nice warm bath and put
her down...two hours later she was up, and a few hours after that she
was up again... Wednesday was a tough day for our little Peanut.
She was very lethargic, refused to eat and even naughty at times, very
unlike herself. Wednesday night was even worse than Tuesday, by
the time Thursday morning rolled around Reagan had a fever of 102.9 and
couldn't even sit up on her own. She was extremely congested and
her cough was getting weaker. With a quick call to Dr. Dan's
office we were told to go right to the ER, they would call ahead and let
them know what was going on...as always thanks Joanne! Dada met us
there and had filled out all of the paper work so they were ready and
waiting to check out Reagan. A frenzy of vitals being checked and
a scared little girl and we were taken directly to a room to await the
doctor. Reagan had been coughing so hard that she vomited, luckily
I saw it coming and caught it in my hand and saved Pinky! We were
happy to see that they had Dora on video in the room, so that helped to
calm Reagan down. Another check by the doctor and we were told
that Reagan has a "screaming" ear infection, I think that was the doc's
way of saying it was bad. They were also concerned with Reagan's
coughing, breathing and chest movement, which led to a chest x-ray.
They saw some "junk" on the lower right side or her lungs and decided to
admit her for precautionary reasons. Tuesday and Wednesday night
was nothing compared to Thursday. The poor pumpkin was so
exhausted and just couldn't get comfortable enough to sleep. As
much as we wanted to go home, it was definitely for the best that we
were at the hospital.. They were able to give her treatments with a
nebulizer and do chest therapy and also deep suctioning to help move the
"junk" in her chest. Reagan became dehydrated so they tried to get
an IV going at 2:00am...2 attempts and no go. Thankfully Eva,
Reagan's nurse said she'd call and see if they could just try to keep
pushing fluids and not keep poking Reagan...yeah the doc agreed!
By mid morning Reagan was hydrated;-)
Dr. Dan's wife had a baby boy
Thursday morning (congrats!) so we were without him, but one of his
other great colleagues step in, Dr. Grunske, she was very nice and
extremely concerned for Reagan. She came to see us first thing
Friday morning and check in on Reagan and give us an update. Dr.
Gershan stop in and went over things with us and checked Reagan over as
well. Unfortunately we had to stay another day/night. With
around the clock outstanding care from all of the nurses Reagan's fever
broke and we even got her to eat a little bit. Getting the okay to
come home hinged on Saturday's chest x-ray. It had to look the
same or improved to go home....thankfully it was the same and they let
us bring Reagan home. We are in lockdown right now, no visitors
and no adventures until Reagan is better. We will check in with
Dr. Grunske on Monday and Friday and go from there. In the mean
time Reagan is on more antibiotics for the ear infections, and I have
learned some new skills. I now can do the nebulizer and suctioning
from home with some new equipment and learned how to do some chest
therapy to get the "junk" moving on out!
Reagan is thrilled to be home.
As tired as she was when we walked in the door she was so excited to see
her toys and be home she played for over an hour before taking a nap!
Visit to Dr. Gershan's
(3.27.07)...entry from mom
This morning we saw Reagan's
pulmonary doctor. We have been concerned for quite some time with
Reagan's breathing and excessive sweating when she sleeps. Last
July Reagan did a pulse oximetry study at home over night to see
what was going on with her breathing. The results came back that
her levels were with in the normal range. We hoped that things
would just work their way out and she'd sleep easier. Well we have
become increasingly concerned and so has Dr. Dan. He got us in to
see Dr. Gershan to have him take a closer look to see what's causing the
excessive sweating. Dr. Gershan checked Reagan over, she was very
calm and much more relaxed than usual at Children's. He said that
she looks good, but wants to get to the bottom of the
sweating/sleeplessness issues so he has order a sleep study for Reagan.
Reagan and I will have to spend the night in the hospital and they will
hook Reagan up to lots of monitors and she'll have a bunch of leads on
her, but this will hopefully help us understand what is going on so we
can help her get a more restful sleep. The study isn't scheduled
until mid-May, but I will keep you posted!
Visit to Dr. Dan's (3.16.07)
Today we went to Dr. Dan's to get
my ears rechecked to make sure that they were both all better. Dr.
Dan gave me the once over and said that I looked very healthy. I
know that my mom and dad were sure relieved to hear such good news
today! The best part of my visit to Dr. Dan's was the cool lion
that Joanne and Dr. Dan gave to me for "being so brave." He
roars and is very soft. I think I'm going to name him Leo, Grandpa
Larson suggested that. Leo and Pinky played train with me this
afternoon and I think that they are going to be good buddies!
Thanks for making my day Joanne and Dr. Dan!!!!!!!!!!!!
Playing with my cousin Steven
(3.13.07)
My cousin Steven just left today.
I was sad to see him go. We had lots of fun playing the last few
days. Today we went to the zoo with my mom, aunt Jackie and cousin
Steven. It was really nice and warm outside so that made it even
better. Brittany the elephant has a new friend named Ruth. I
waved and gave Ruth air "huggas" and welcomed her to the zoo. I
also counted the giraffes for cousin Steven. All in all it was a
very fun day today!
Sick ...entry from mom (3.2.07)
Well our little girl is sure a
stinker...We haven't slept the best in our house for over a week and a
half. Reagan has been getting up between 2-4 times a night and we
have no clue why. She wakes up early and looks so tired, but she's
always smiling. She hasn't been eating the best either, but what's
new. She's been tiring out and getting floppy sooner than usual,
and now two weeks after going to the doctor's office because Reagan had
a diaper rash like nothing I'd ever seen we were back at the office, and
this time Dr. Dan was in! Despite two weeks of Triple Paste,
Neosporin, no wipes just water to clean her tush, laying around for a
half hour a day without her diaper on to get some air the rash still
wasn't gone. We saw Dr. Dan on Thursday for the diaper rash and
left with a prescription for amoxicillin because Reagan has a.....drum
roll...double ear infection. She hasn't had a fever or been
tugging at her ears, and may I say she seems to be the happiest kid with
an ear infection I've ever seen! We also got some hydrocortisone
for her tushca and after only one day of using it Reagan looks ten times
better, and she slept through the night. Dr. Dan sure knows his
stuff!
Wheelchair practice number 3 (2.20.07)
This morning after the meeting with
my mom, all of my therapists and my service coordinator I finally got to
drive my wheelchair. Anne set up some new walls and obstacles and
I managed to not crash into them and even got around one or two.
But the most exciting part was when Anne let me go into the gym by the
playhouse and I turned around, stopped, and then went straight towards
mama and Kristen! They were all so proud of me for doing it all on
my own. I got really tired after a while so Anne let us cut
therapy short today so I could go home and get some rest. I have
an intestinal flu and I'm feeling a bit under the weather. But I'm
still loving driving!
What an exciting day! (2.13.07)
I had a most exciting day today.
Not only did I get to practice driving my wheelchair and go to play
group but I got to stay up way past my bedtime and hang out at a
basketball game!
It started out with wheelchair
driving practice. [Practice
number 2 video] I think I'm getting the hang of things.
My mom and I worked on stopping this week, we practiced at home in my
car. I drive around and around and listen for stop. Then
once I stop I get lots of hugs and kisses from my mom for
listening so well. Anne set up a table with ,y favorite toys and I
would have to drive the wheelchair across the room to get to the toys to
play. After practice we did some therapy and played with the ducks
and whales.
Then Anne and Kristen invited us to
play group after therapy. My mom and I played in the ball pit,
rode down the slide, jumped on the trampoline, and I went on the swing
all by myself. Wee...it is so much fun.
After a nice long nap and a big
lunch and afternoon snack. We all headed to Waukesha North for the
"Rally for Reagan Night." It was tons of fun and I got to see lots
of very nice people. I even got to see Coop and Peanut and Nancy
and Coach Gilmore! They did such an outstanding job with the
night. They raised over $1200.00 for
FSMA. [For
pictures , a video clip, and more about the night click here]
Tiring week...entry from Mom
Last week was a pretty long and
tough week for Reagan. It actually began about two weeks ago with
Reagan's reflux coming back and creating sores on her esophagus again.
Jeni, Reagan's Speech Therapist, called Dr. Dan and they got her on
Prilosec right away to help. In the meantime Reagan was not eating
much, if anything at all and getting very backed-up. After going
over 5 days without a bowel movement , a lot of apples and prunes, and a
lot of discomfort we called the doctor's office and they gave us a
course of treatment for her. After a few hours it worked and
Reagan was feeling better. Unfortunately, she went another 4 days
without a bowel movement. So now she is on a very gentle
prescription to keep her moving and her stool soft. It took about
another two days to work, but I am happy to say it seems to have done
the trick for now! Thanks to Joanne, Dr. Dan's nurse, for helping
walk me through Reagan's treatment over the phone!
Day 1~ wheelchair practice
(2.6.07)
It was a very exciting morning for
us! We went to start my wheelchair training. I was a bit to
small for the chair so Anne had to put some pillows behind my back to
scoot me forward so I could reach the joystick. I mostly went
backwards in circles and crashed into things and people here and there.
It was very fun though, I can't wait until next Tuesday's practice!
Click to see a video of practice #1
Wheelchair training OK
Today (1.30.06) during PT with Anne
she said that we got the okay from out Birth to 3 coordinator to begin
my electric wheelchair training. So that means next Tuesday
instead of Anne coming to our house my mom and I are going to NBT to
start practicing on their chair. I will let you know how it goes,
and knowing my mom I'm sure she'll take lots of pictures for you to see!
Everyone is invited....
Coming up on February 13th the
Waukesha North Girls Basketball program is going to host a Rally for
Reagan Night at their game against Germantown. Coach
Gilmore, Coop, and the big Peanut are organizing the night to raise
money to donate to
Families of SMA
for research! You are all invited to come and support the
Northstars
and SMA research on Tuesday, February 13th at the Waukesha North field
house!
My Wheels!
For Christmas this year my mom and
dad got me a race car. It is pretty cool if I do say so myself!
Most of the cars out there are foot pedal operated, which I am not able
to do, but my mom found me one that uses two joysticks (one on the left
and right) to drive it. I am really good at going round and round
in circles...I make my parents dizzy just watching me drive in the
kitchen. I really like to chase after my dad while my mom sings
the "speed racer" song!
20
pounds!!!
12.12.06...Great news...I finally hit the 20 pound mark.
Today I met
another new doctor, Dr. Klingbeil. He is a very nice guy. He
specializes in pediatric rehabilitation and fitness. He is apart
of the MDA and Special Needs Clinic at Children's Hospital. He
knows a lot about SMA and will help coordinate my care and equipment
needs. He was already talking with my mom and dad about getting me
a power chair so I can explore just like Dora.
After we got
home from my appointment we celebrated my great weight gain with some
ice cream and splashing in my bath chair!
Bath
Chair
This is my
new bath chair. It sure makes bath time a lot safer for me.
The chair is adjustable and as you can see a bit big, so it can grow
with me! I like it because now I can splash around and not fall
over. Mom likes it because she can wash me and not worry as much
about me falling over, and it helps her back;-)
Leg
braces
I just got
my new leg braces. They have butterflies on them and best of all,
now I can get back in my stander. The legs braces are designed to
help keep my feet and knees in proper alignment when I'm standing.
I also may have to start wearing them even when I'm not standing to help
my feet and ankles stay loose and stretched out.
18
month Check-up
Today
(11.13.06) I had my 18 months check-up with Dr. Dan. I weighed in
at 19 lbs and 6 oz and am 30.5 inches long. I'm just getting over
a cold, but I am feeling much better and should gain back that weight I
lost in no time! They gave me some more shots today, but I'm a
tough girl and I barely cried at all. Dr. Dan even gave me some
Dora stickers when we were all done.
New
tool bench
Thanks for
my new tool bench Grandpa Larson...it made me feel better. Now
maybe I can help Uncle Dan and Eric build some walls for my new
playroom!
Visit
with Dr. Dan!
On Thursday
(10.19) My mom took me to Dr. Dan's office to get my flu shot. Dr.
Dan wanted to check in on me and see how I was doing and especially
wanted to check my weight. Guess how much I weighed????? 19
lbs and 12 oz!
Yeahhhh! My mom and Dr. Dan were so very excited, I moved up on
the growth chart for the first time in a pretty long time. I was
hoping they'd be so excited I wouldn't have to get that shot, but they
remembered:-)
B4SMA
A special
thank you to my new friends MJ Purk and Brenda Hanson! They sent
me this beautiful blanket. MJ and Brenda started B4SMA
to
provide love and blanket hugs to SMA children and their families. MJ
has lived with SMA for eighteen years and has always enjoyed
supporting SMA families and their endeavors. Brenda has been MJ's
caregiver and friend since 1991. Brenda learned to quilt
a few years ago and has since made MJ too many quilts, so they
decided to send them to their buddies who also have SMA.
My
First Halloween Party
I went to a
Halloween party at New Berlin Therapy on Friday (Oct 20) with my mom,
dad and Uncle Josh! I had a fun time. My mom got me all
dressed up as Minnie Mouse. I got to play in a swing and dance
with my dad and mom, shoot hoops, color pumpkins and play with Anne and
meet some other kids Anne helps!
My first
ponytail
My mom did
my hair in a ponytail for the first time! (Oct 12, 2006)
Therapy
Physical
therapy with Anne has been going very well! Anne comes to my house
twice a week and we do all sorts of different things. We work a
lot on rolling, we do some tummy time stuff and Anne helps me hold my
head up. Anne does different stretches for my feet, legs and hips.
I work on reaching and balancing and sitting. Anne always brings
cool new toys for me to play with and check out. My mom and dad do
the exercises Anne gives them with me everyday. It is hard work,
but it is helping me get a bit stronger. Although I can't roll
over like I used to I am getting better and stronger all of the time, I
can even roll onto my side all by myself now!
Speech
therapy with Jeni is fun because I get to eat snacks and learn new
signs. Jeni comes once a week and this week she brought this cool
toy tractor with a farmer and his animals that makes all kinds of
noises. I was having so much fun playing with it she's letting me
keep it until I see her next Tuesday.
Some days I
get tired and it's hard to eat, but I've been eating very well lately, I
even got some ice cream yesterday. Jeni helps give my mom and dad
ideas on ways to help me with eating so I'm getting enough calories to
stay strong and get bigger.
I am going
to be starting Occupational therapy in another week or so. I will
let you know how that goes!
Reagan's new
Kid Kart!
Reagan just
received a brand new Kid Kart fitted just for her today. It is a
very versatile piece of equipment that has two separate bases; one
stationary, this will become her new high chair, and one mobile, this
will become her stroller/wheelchair.
My new stander table
Thank you
Eric and
Jeff
for my new play table!
My second
cousin Eric and his co-worker
Jeff just built me
this super cool play table for my stander. Now I can play with my
toys while I'm standing and they won't fall. Thank you, thank you,
thank you cousin Eric and Jeff you guys are awesome! I love my new
play table. And thank you to Auntie Jeannie and Uncle Dan for
driving all the way to my house from Kimberly to bring my new play
table.
Lots of
Love, hugs and kisses,
Reagan
The
Stander
This is one
of Reagan's favorites. We actually have to hide the stander behind
the sofa otherwise she just points at it all day. She spends about
45 minutes in the morning and 45 minutes in the afternoon standing and
playing. Sometimes she even gets to watch Dora while standing.
Standing for Reagan is important, it aids in digestion and breathing,
and helps with the proper development of her hips.
[
...
2
3
4
5
6
7
8
9
]
|
