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End of November 12.1.07
(entry from mom)
We have had quite a busy end of the month. We hosted Thanksgiving
at our house and had 11 people for a half time meal in which Reagan
provided all of the entertainment. Uncle Josh thought he could get
away with continuing to eat and not clapping for Reagan's wonderful
medley of Twinkle, Twinkle, ABC, Old Mac Donald, but she called him and
and told him to start clapping...too funny. Reagan played her
first game of Candyland and did a pretty good job, I don't know if
anyone ever actually won, but we had lots of fun none the less.
Joe left for Singapore on Monday the 26th and safely landed at O'Hare
tonight (Saturday). Monday Reagan had her first Holiday craft
class, which she really enjoyed. It was Gingerbread night so she
got to decorate and color different gingerbread cut out and we even glue
cinnamon on one, it smells yummy! Tuesday we had story time and
got a bunch of elephant books, Reagan's tummy was bothering her and she
was coughing more than usual so we just laid low for the rest of the
day. Wednesday was PT with Anne in the morning and some shopping
in the afternoon and dinner with Amie. Reagan helped make
guacamole and then her and Amie watched Rudolph while I finished making
dinner. It was a fun girls night! Thursday Reagan had speech
with Beth Anne, music class with Miss Sara, OT with Jenny, lunch with
Grandma and Grandpa Larson and me, then pool therapy, and then a Packer
party with Uncle Josh, Kristen, Grandma and Grandpa. We also got
some great news....Reagan's
powerchair will be delivered on
Wednesday!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am so thrilled for Reagan to
get some independence. I am going to a ramp place in West Bend on
Monday to pick up a portable ramp so she can get the chair in and out of
the house. We mostly likely won't get a accessible van until the
spring, but that just gives her more time to master driving her chair
and learning to listen to her mom and dad before we go out and about
with it. Friday we went to the crafty store and then came home and
made ornaments and necklaces and other fun stuff, we also got our
tickets for the Nutcracker in the mail. We are going to take
Reagan to an afternoon performance on Christmas 'eve' eve. We have
been listening to the music suite and she seems to really enjoy it,
especially when I pretend to be a ballerina (ok, stop laughing
everyone!)
Reagan's first hair cut..."no
thanks" 11.19.2007 (entry from mom)
Today Reagan, Grandma Larson and I
went to get our hair done. Reagan was suppose to get her hair cut,
but so politely said "no thanks" when asked if she wanted to come
and sit in my lap to have Kelly cut her hair. I was just planning
on a little trim since she has yet to have her hair cut. I didn't
want to force her and freak her out for any future haircuts, so we'll
just wait and she if she wants to try it next time. She told Kelly
that she would come back "next week" though.
Zoo day...11.13.07
I got to see the baby elephants and
cheetahs and monkeys and giraffes and baby fishes and... It was
lots of fun!
Two babies! 11.11.2007
Today I got to play with two
babies...Baby Emma and Baby Evan. It was so much fun. I sang
them Tinkle, Twinkle Little Star and the ABC's and Old MacDonald.
Uncle Dan forgot to clap after I sang my ABC's but I reminded him!
I got to hang out with daddy, Carrie and Auntie Jeannie all day while
mommy, Uncle Dan, Eric, and Sara put all of the finishing touches on the
downstairs. Thanks to all of them for building me my very own play
room...I love it!
I am finally feeling all better.
A few days after we got home from vacation I got a really bad cold and
was pretty sick for awhile. Good thing mommy and daddy have all
that equipment at home to take care of me so we didn't have to go to the
hospital and see all the docs.
Fly to Disney...10.23.07 (entry
from mom)
We made it! We had an
early flight yesterday morning, 7:00 from Chicago. So we had to
get up at 3:00 to get going. We were able to squeeze everything in
the car the night before to help expedite the morning. Reagan was
all awake when I went in and so excited to fly on the plane and go to
Disney. I don't know if I've ever seen such a happy 2 year old at
3:00am. We were hoping she'd sleep on the way to the airport, no,
not really. I think she fell asleep about 20 minutes before we got
there. I'm happy to say we made it into the terminal and through
security with no problems. Security took awhile before they had to
check and swab all of the equipment...the biPap, pulse ox, cough assist,
suction, KidKart, feeding pump, car seat, and then the diaper bag.
But like I said they were very nice and didn't give us any problems.
We were able to board the plane right away and gate check the KidKart.
Again, the flight crew was helpful with us getting all settled and on
board. Poor Joe worked up quite the sweat getting all of the
equipment stored over head (that cough assist machine alone is probably
25-30 lbs). Reagan loved the flight. She got such a kick out
of take off...go faster, go faster, higher, higher. She was
awesome the entire trip. We got to sit first class, all of Joe's
travels certainly paid off :-) She had fun during landing as well,
pointing out all of the cars and water and clouds! Once we got our
bags and our rental Reagan was super tired. She slept all the way
to the resort, about 20 minutes. She took a small nap and Joe went
to the local WalMart to get some provisions. We ended the day in
the pool and read lots of books before bed. Reagan's tummy has
being doing somersaults, but it doesn't seem to be bother her to much.
Today we are off to Animal Kingdom at Disney and hope to take Reagan on
the Kilimanjaro Safari ride!
Felling better...10.20.07 (entry
form mom)
To make a long story short Reagan
is doing a million times better. We are back to venting her all
day on a Ferrell Bag, but it has help relieve the bloating and gas.
We are going to try our new regimen to help with the constipation and
hope that helps as well. Unfortunately, she has not had a bowel
movement since Wednesday night, but I hoping she will today! We
are going to start packing for Disney today. I got a call from
American Airlines and they approved for us to carry on all of her
equipment. Now we just have to figure out how the two of us are
going to haul Reagan, her car seat, her equipment, and all of our
luggage to the terminal once we park! I'm sure we'll think of
something! Thanks for all of the well wishes and gifts for a fun
and safe trip to Disney!
A long week so far...10.18.07
(entry from mom)
Our little pumpkin has certainly
had a long week. Sunday night Dr. Schroth called to talk with us
about some lab results. Reagan is Vitamin D deficient and her
Carnitine levels are low, something that is not super unusual in SMA
kids, so now she has two new meds to add to her daily regimen. She
also had some severe constipation this week. Reagan had an
Occupation Therapy re-evaluation and went and saw Dr. Dan on Monday.
He did an ab x-ray and it showed that she was completely back-up, so he
referred us to Children's GI clinic. Wednesday Reagan got her flu
shot and was a very brave girl. Today we saw Dr. Biank in the GI
clinic and have a new plan of attack and some ideas as to what it going
on. We are waiting for some test results and will know more
Friday. Tomorrow we are going to Madison to get Reagan's TLSO,
it's a back brace. We did do lots of fun things this week like
make cookies, go to craft class, go to music class, go to the "pizza
place" with Grandma and Grandpa Larson, go shopping, and take a nice
long walk to enjoy the weather. The best part of all Joe is home
and we are leaving for Disney Monday morning. It is so cute, every
morning Reagan wakes up she asks..."fly to Disney today mama?"
Soon I'll get to say YES!
P.S. Thanks Auntie Jeannie for the
cute outfits and camera for Disney, thanks Grandma Helga for the
blankets for Pinky and Jungle Book movie, and thanks Katie and Jenny for
the cool leggings and My Little Pony Princess, and thanks Grandma Larson
for the Diego Safari Video and cool purple pants. WOW! did someone
get royally spoiled this week or what?
A trip to the Pumpkin
Patch...10.6.06
This morning we all went to the
pumpkin patch down the street. It was really warm out, but we
still had fun. I got to play some games and I won some prizes too!
Then mommy and daddy took silly pictures of me as a flower and a
monster. We each picked out our own pumpkin and I got some baby
ones to look after.
Crafty class with Daddy and Aqua
therapy with mommy and Anne...9.24.07
This morning I had my first session
of pool therapy. I really like swimming and the pool was nice and
warm. Anne brought a lot of fun squirty toys to play with. I
was even kicking my legs and splashing mommy!
Tonight my daddy and I had our
first crafty class together. It is called Falling into Fun.
We had lots of fun singing and coloring and pasting. Tonight's
theme...apples! We sang a song about apples, I made an apple for
daddy and even glued on a green stem and then I colored a picture of
three apples to bring home to mommy. I can't wait until next
week's class!
Music Makers class...9.20.07
This morning after speech therapy
with Beth Anne I had my first Music Makers class. My mommy and
grandma took me to the New Berlin Rec Center for class with Miss Sara.
We sang and danced and clapped and played rhythm sticks and jingle bells
and then my mommy and I did some jumping...it was so much fun.
Grandma said that I was the best dancer there! After dance Anne
came by so we could do my PT since I was busy yesterday. Then I
took a nice long nap!
Muscle Clinic Day in
Madison...9.19.07 (entry from mom)
Reagan had quite the long
day at UW Children's hospital. Muscle Clinic is a day long
appointment where Reagan sees a variety of doctors and
therapists and nurses...it's a big checkup! We started the
morning with Dr Schroth, Reagan's lungs sounded great!!!
However, Reagan is still having some bowel issues which we think
it contributing to some other problems, mainly reflux.
Fortunately we now have a good game plan in place and with the
help of some milk of magnesia Reagan had lots of movement in her
bowels if you know what I mean.
We did meet with Dr. Mann,
an orthopedist, about Reagan knee pains and posture. The
knee pain is mainly from a severe tightening in her legs, called
contractures. We are going to make some adjustments to her
knee immobilizers to help with that and continue to try
standing. Unfortunately it is difficult road to get her
back to where she was earlier in the year with her standing, but
we will do everything we can to help her. Reagan also was
fitted for a TLSO, in other words a back brace. The TLSO
will help keep Reagan sitting up tall and straight and keep her
spine that way. It should be ready in about two weeks.
We also met a cute little
girl named Annie who has SMA II and her parents today as well.
Annie is in 3rd grade and had a pretty cool bright pink power
chair that caught Reagan's eye! She showed us all of the
cool things it could do. It was nice to talk with other
SMA parents and get some good tips and insight into things.
Of course Reagan was a
trooper! She certainly had her moments, but everyone made
sure to cheer her up and make her smile with bubbles, a new
blanket and even a beannie baby elephant named...Peanut!
She was certainly a happy camper when we got home and went to
bed with no fuss at all earlier than usual!
Grant Sheppard Memorial
Scramble for SMA...9.14.07
Today mommy and daddy along
with Uncle Josh and Grandpa Larson golfed in the Grant Sheppard
Memorial Scramble for SMA. Thanks to Scott and Lisa
Sheppard for running such an outstanding event in memory of
their son Grant who had SMA I.
Mommy was lucky enough to win a
silent auction item...a week at a Cypress Point Villas in Orlando, FL.
Now we get to plan my first vacation. Sea World and Disney will
definitely be on the agenda!
Visit to Madison...9.10.07
(entry from mom)
This afternoon we had to take a
trip to Madison to get Reagan's tube site checked. For the past
week Reagan has been leaking from her tube site at night when she is
feeding. She wakes up soaking wet without getting all that she
needs. So this morning I called Dr. Shaaban's office and they got
us in right away. We got ready and headed to Madison. The
balloon that holds Reagan's tube in place was a mL low of fluid and
Reagan was VERY constipated. Laura, Dr. Shaaban's nurse taught me
how to check the balloon's fluid level and change her tube out. I
was a little scared, but I did it no problem. I was actually
surprised at how easy it was to do. Laura then swabbed silver
nitrate around Reagan's tube site to help with the granulation tissue
building up. Reagan was a champ the entire time. She didn't
cry or anything. Unfortunately solving the constipation issue was
not entirely pain free. She did go to bed tonight feeling better
and somewhat relieved. Tomorrow we have our first Story Time at
the New Berlin library, it should be fun!
Post-op follow up
#2...8.28-29.07 (entry from mom)
On Tuesday and Wednesday Reagan had
her second post-op follow up in Madison with Dr. Shaaban for her g-tube.
Tuesday Reagan had an upper GI done. She was awesome about it.
Having the barium injected through her tube definitely makes life
easier. The nurse told Reagan they were going to take pictures and
a video of her tummy. Reagan didn't cry at all, in fact when the techs
told Reagan they were taking the pics she said "cheese" and smiled!
Of course she talked everyone's ears off about going to see "teve" and
grandma. The nurse said that she was the best patient of the day.
Wednesday we meet with Dr. Shaaban
and went over the GI results. Everything looked fantastic.
She was all smiles and really liked the new Children's Hospital in
Madison. She gained some more weight and really got longer.
She's 22 lbs and 14 oz and 34 3/4 inches long!!!!!!
Since she was such a good big girl
at the doctor we are going to the zoo Thursday morning and meeting daddy
for lunch!
In home wheelchair
testing...8.27.07 (entry from mom)
Anne is a rock star! This
morning we had PT with Anne and met with Sara, Reagan's Birth to 3
coordinator. We got the okay to try some pool therapy and Reagan
will be evaluated by a new OT this fall as well. Reagan was able
to practice driving the power chair this morning and show off for Sara.
But the best part of the day was when I received a phone call from NBT
saying that the Permobile Koala wheelchair was here for Reagan to check
out. Anne had an opening at 3:00, so we called dad and off we
went. We thought it may take awhile for Reagan to get acclimated
with the new chair, but she of course proved us wrong! Within 30
seconds she was off and cruising around. We worked on the up and
down positions and driving around, since it is a wider and longer base
than what she has been using, but she seemed to get the hang of her
space in no time. Anne being the rock star she is thought to quick
ask the guy who had just come with the second chair for Reagan if he
would be able to drive the Koala over to our house so Reagan could try
it out in her own surroundings. He very generously drove it over
to our house. We got home and put Reagan in her chair and went and got
the mail together. When we got to the mailbox she was even able to
raise her chair to reach for the mail herself! I am so excited for
Reagan, to see her move around as she pleases is an indescribable
feeling! (Check out the video on the Home Movie page)
Being a big girl...8.23.07
Today my mama and I made a deal; I
would be a big girl and throw away my nuks and mama would buy me any toy
I wanted. I picked out a really cool toy, it is a Little People
Noah's Arc with two baby elephants! My dada and I played with it
before bed and I am excited to play with it again tomorrow. It was
a bit rough going to bed without my nuk, but I'm a big girl and I'll
adjust. This weekend Uncle Josh is coming to visit, he just had
knee surgery today so I'll help take care of him and make him scrambled
eggs and toast with Auntie Jeannie's jam. That should help him
feel all better. Then next week I have two doctors appointments in
Madison, one on Tuesday and one on Wednesday, so I'll get to stay over
night at Grandma and Grandpa Larson's house. I'm sure my mom will
let you know how everything goes!
Golf outing...8.18.07
Yesterday was the golf outing that
my mommy and daddy and grandparents do to raise money for FSMA. It
was lots of fun. I got to see all of my aunts and uncles and
grandparents and godmother and cousins! Even Dr. Dan and Anne came
and played. I think my favorite part of the day was when mommy and
daddy let me say hi in the microphone!
Choosing a power wheelchair for
Reagan...8.14.2007 (entry from mom)
This morning during PT we met with Jeff to help us pick out a power
wheelchair for Reagan. It was a bit overwhelming, kind of like
choosing a car, which by the way we are going to have to get a new one
of those as well, but one thing at a time. Jeff showed us the big
two makers of chairs,
Invacare and
Quickie. He explained it like
having Fords and Chevys to choose from. He also showed us one
other brand called Permobile. They make a chair called the
Playman/Robo, it is really cool!
The seat can move up and down to the floor, which would be great for
Reagan to interact with friends at all levels! The only potential
issue would be insurance. It is a much more expensive power chair,
but we think it would be great for Reagan's socialization with other
kids her age to be at their level and play on the floor and then when
they get up to move around and play somewhere else Reagan would be able
to do the same. Right now it can be frustrating for Reagan when
she is playing and her playmates get up and go to a different spot and
she's stuck where she's at unless we are there to move her. The
power chair Reagan has been practicing on is an Invacare model.
Jeff is going to get us a Quickie model to try out and also call the
Permobile rep to try and get one brought here. The closest rep is
in Chicago, so it may take awhile! Needless to say it is really
exciting to start this process of helping Reagan become more
independent!
Post-op follow up 7.25.07
This afternoon we went to Madison
to see Dr. Shaaban and Dr. Schroth to check in and make sure I'm on the
right track and my tube site is healing well. Everything went very
well. I gained an entire pound since surgery and am 33 1/4 inches
long now as well! I have a little granulation tissue around my
g-tube site, but it is nothing to worry about. My mom got some
cream to put on twice a day for two weeks and it should be all better
then. I also don't have to be vented all day anymore, so that
means I can move around without the IV pole and Farrell bag all day.
I only have to be vented at night during my tube feed, when I eat during
day or if I get gassy. They are also going to change my formula to
Neocate one+ which is elemental. That means that the ingredients
are broken down to their simplest and purest form so they are easier for
the body to process and digest.
After my appointment we stopped by
Grandma and Grandpa Larson's for a visit and I got to play with my
cousin Steven and have dinner with my Uncle Josh and Aunt Jackie.
Resuming wheelchair driving
practice 7.23.07
Now that I'm feeling better I got
to practice driving a wheelchair again. It's been kind of a while
since I've got to practice my driving. I did pretty well if I do
say so myself! Anne is going to set up a meeting with the
wheelchair fitter guy and then hopefully I'll have my own in no time.
Tomorrow I get to go back to NBT to get my knee immobilizers that I will
wear at night to help my legs from getting any tighter and hopefully
straighten them a bit. On Wednesday I have an appointment in
Madison with Dr. Shaaban to check out my tube area to make sure
everything is healing well.
Happy Birthday dear Dada 7.17.07
Today my mom and I went and
saw dada at his work and took him out for lunch for his
birthday. Then dada came home early and we had
chocolate cake and sang him "Happy Birthday" I love my
dada lots!
Time to go home 6.30.07...entry from mom
What a great day. Reagan did
awesome with her first overnight tube feeding and slept pretty well.
She woke up this morning and the first thing she said was "go home."
Shortly after Dr. Shaaban stopped by and said how great Reagan was doing
and how strong she looked so he gave us the option of going home either
this afternoon or tomorrow, depending on how comfortable Joe and I were
with operating all of the equipment and making sure we could have it all
delivered once we got home. Our nurse Kristen rocked the house and
got everything taken care of for us so we could get Reagan home.
Needless to say we are all thrilled
to be home! We got Reagan all washed up, fresh pj's and played
with her Little People. The Apria guy came by and set up Reagan's
pump and walked us through operating it. She did pretty well
getting to sleep and running the pump. She is not allowed to eat
any solid foods for at least two weeks. We also have to keep her tube
open/vented until her Nissen is healed. We will go back and follow
up with Dr. Shaaban in two weeks and go from there. In the mean
time we will have a nurse coming to our house to check on things.
She has a Mickey Button on her
tube. Once she is all healed up we will be able to take the tube
off and cap the Mickey button during the day, and then just hook her up
to her feeding tube at night. Reagan's procedure was done
laparoscopic, that is what the five other steri-strips areas are (one is
under her diaper). It really doesn't bother Reagan at all!
Day 2 of Recovery 6.29.07...entry from mom
Reagan is doing very well today.
She did very well on Bi-Pap for the first 3-4 hours of sleep last night.
She was woken up every 4 hours for her CPT, but other than that I think
she got some good rest. She was having some pain last night and
earlier this morning, but she is now resting comfortably. Because
of Reagan's SMA they do not want to give her any narcotics like Morphine
for the pain because they relax the muscles to much and would make it
problematic for Reagan to breathe on her own. She is getting
Tylenol and another Motrin like medicine to manage the pain. She
finally got to eat a little something this morning. She drank
about 2-2.5 oz of Pedisure from her bottle this morning around 9:30 and
then we rocked until she feel asleep. It was a short lived nap and
dad got some of her toys out and we played. She did very well
sitting up and reaching for about 15-20 minutes. I think that
pooped her out though. Dr, Shaaban just stopped in to take a look
a the peanut and was happy with how well she is doing, so we are going
to get to move to the general pediatric floor for the remainder of our
stay. They will continue to monitor her closely, but I'm sure
everything will go well!
G-tube and Nissen Surgery. 6.28.07...entry from mom
Today we went to the UW Madison
Children's hospital for Reagan's surgery. We got there around 9:15
and got settled into a room and into a gown and answered some questions.
Our poor little peanut was getting pretty hungry and a bit tired, but
Laura, Reagan's nurse brought in a bin of Beanie Babies for Reagan to
play with and pick one for her to keep. Of course she liked them
because they were all different animals. (She picked the Blue Jay)
After Dr. Shaaban and company stopped in to go over things once more
Reagan got back to her Beanie Babies until it was time to go. I
got to take her in to the operating room and sit with her until she was
out. In the mean time she told all of the doctors and nurses about
the sting rays and sharks at the zoo, and of course the "baby elles."
While Joe and I waited Dr. Schroth stopped down to say hi and go over
post-op respiratory care. Before we knew it Dr. Shaaban came down
to go over the surgery and post-op and we were taken to the recovery
room. Reagan had already started to come to by the time we got
there and was asking for me. Yeah, she remembered me;-) We
were in recovery for a while because Reagan was having difficulties
clearing the secretions in her lungs. Once we got that under
control they started her on bi-pap and she fell asleep for about a half
hour until we all moved on up to the PICU. The only reason she is
in the PICU is because of all of the new machines she is on. Dr.
Shaaban stopped by to check in on our peanut once again. She even
thanked him! What a polite little girl... Dr. Schroth also
was here for a good part of the night making sure Reagan was okay and
that all of her respiratory care and equipment was in order.
Reagan got to watch some Dora while doing her CPT and Cough Assist.
She finally got to sleep around 9:30. Tomorrow morning Reagan will
get to "eat" through her tube. If all goes well, we should be home
Sunday!
SMA Acceleration Act
announced! 6.18.07
Click on this link to read about the
SMA Acceleration Act! My
mom is going to put together a letter to send out to your
representatives telling them to support this bill so we can find a cure
for SMA. Once it is ready she will post it on the website so you
can help! Thanks
Dada comes home! 6.9.07
My dada got home this afternoon.
He brought me back a cool t-shirt that says "Praha" on it and got my mom
some cool art work. We played all afternoon and I even got to stay
up late and read lots of 'bookas' with Dada tonight.
A day in Madison and a new cousin 6.6.07
Today was quite the eventful day.
My cousin Sara had a little girl today, Emma Jean! She is very
pretty and I can't wait to meet her. I met some new doctors in
Madison, I went and visited grandma and grandpa Larson's, I played with
cousin Steven, and went out for dinner with Uncle Josh, Grandma,
Grandpa, and my mom.
My mom took me to a really LONG
appointment in Madison today to meet Dr. Schroth and Dr. Shaaban.
They are both very nice and have a lot of experience with SMA kids.
Dr. Schroth is a pulmonary doctor and Dr. Shaaban is a pediatric
surgeon. We started the day with Dr. Schroth, she heads up a
neuromuscular team of doctors that have experience and a good background
with kids like me. She watched me breathe and talked to my mom a
lot and listened to my lungs and all that stuff. She gave us a lot
of good information and is getting me all set up with a machine to help
me cough, a pulse-ox to measure my O2 saturation when I'm sick or it
looks like I'm having trouble breathing, and a bi-pap that I will use
when I sleep to help me get better rest so I'm not working so hard to
breathe. The respiratory therapist came and taught my mom how to
use all of the equipment and showed her some other new stuff.
I also met a dietitian to help find
a way to get me more calories. Because my reflux isn't good adding
a lot of fat to my diet isn't a good idea because the fat will just sit
in my stomach longer and it will add to my reflux. So she
suggested Polycose, which is a carb based calorie supplement that looks
like a sweetener. My mom and dad can just sprinkle it on my food
and it should give me about another 100 calories a day.
Then we met with Dr. Shaaban about
my eating and reflux issues. I am going to have my g-tube surgery
in Madison on the 28th of June now. They are going to do things a
bit different and have done a number g-tube and nissen surgeries on
other SMA kids with great results. Dr. Schroth will also be seeing
to my respiratory care following the surgery and while I'm in the
hospital.
After we were done at the hospital
we went to visited Grandma and Grandpa Larson's. I got to play
with my cousin Steven for a while and then took a nap. When I got
up Uncle Josh was there and we all went to Paisan's for dinner. I
had a few bites of pizza and Uncle Josh shared his fries and ketchup
with me!
My mom and I didn't get home until
a little after 9:00. I took a bath and went off to bed!
Dada is off to Prague and Mama and I are going to meet a new doctor
6.4.07
Dada left for Prague this
afternoon, but he stayed home with us all morning and we played lots of
different games and Dada even made me lots of Play-doh elephants.
Then we had chicken and fries for lunch with some ice cream for dessert.
I can't wait until Dada gets home on Saturday. We miss you dada.
Wednesday my mom and I are going to
Madison to meet a new doctor. Her name is Dr. Schroth and she has
come very highly recommended. I will let you know how it goes!
My mom and I are going to go do
some coloring now!
Met a new Dr. in the am and made blankets at North in the pm 5.21.07
This morning we had an appointment
with Dr. Sato, a surgeon that will be doing my g-tube. He was a
very nice Dr. and just talked with my mom and dad about the surgery and
what to expect after and all that kind of stuff. I'm an scheduled
to have the g-tube surgery on June 14th. The g-tube will be placed
directly into my stomach and I'll be fed part of my calories every day
this way and the rest orally. I have been having some difficulties
swallowing lately and have choked on some of my food. Dr. Dan and
Jeni have become increasingly concerned about me aspirating when I
choke. So, to help me stay strong and prevent any more choking we
have decided that it is time for a g-tube.
This afternoon my mom and I headed
out to Waukesha North High School. The Interact Club helped to
make 5 blankets for B4SMA. I had a lot of fun hanging out
with the big kids today. They even shared some chips with me and I
told them the sounds that different animals make. They did some
awesome work. In about 20 minutes they had finished with 5
blankets. My mom and I are going to send them off along with the 2
my Grandma Larson made to MJ tomorrow.
MDA Walk with the Animals 5.19.07
For Reagan's 2nd birthday party we
got together with some family and friends and participated in the
Walk With the Animals at the zoo. We had a group of over 30
people that joined our Rally for Reagan team and walk the zoo with the
other MDA family and friends. Amy Jansen had a great idea of
making t-shirts for our team. She came up with a wonderful design
with a pink elephant and the phrase "Stompin' out SMA" on the back.
Thanks Amy! We had one of the largest teams at the walk. It
was a beautiful sunny day that ended with some cake and ice cream!
We really are so very blessed to have such wonderful family and friends
that are so supportive of Reagan and will do all they can to help her
get better....thank you all.
Sleep Study 5.16.07
Last night Reagan and I graced
Children's Hospital with our presence once again, this time for a sleep
study. Dr. Dan and Dr. Gershan thought it was time to do this to
check out what is going on with Reagan at night. Joe and I have
been concerned for some time with how hard Reagan breathes at night as
well as her excessive sweating. Usually when we go and listen in
on her we think Darth Vader is in the room
Reagan and I arrived at the sleep
clinic last night at 6:30 and within a couple minutes two nurses were in
the room getting Reagan all hooked up. I brought Dora in hopes
that there was a TV...yeah, there was. Unfortunately it didn't
keep Reagan from getting upset. The nurses we very gentle getting
all of the leads and electrodes and such on Reagan. All in all it
took about 35-45 minutes to do. I rocked with Reagan for quite
awhile and we read about 20 books before she finally said nigh-nigh.
She slept from 8:45-10ish, and then, well, she didn't. Finally,
around 2:00am she feel back asleep. Originally we were suppose to
be done and head out around 6:00am, but they need at least 6 hours of
sleep data, so we had to stay until 8:00. For the most part Reagan
slept through. Sadly, she had to wake up to bright lights and a
finger prick to get blood. The nurse came and unhooked Reagan and
off we went home for a nice warm bath!
We should get the results within a
week or two. Tomorrow we are back to Dr. Dan's for Reagan's 2-year
check up, which I think entails some more shots...no wonder Reagan gets
all anxious at the doctors office.
....you say it's my birthday.... 5.11.07
Today is my 2nd birthday and I've
had a great day so far! We woke up this morning and went to the
kitchen because my mom was going to make me cheesy eggas and toast for
breakfast and we saw the ducks in the neighbors pool. Daddy and I
went out on the back porch to get a closer look. Unfortunately we
got to close and they flew away. After breakfast and a bath I got
to watch Dora and then we went to Dr. Dan's office. My lungs
sounded really good and there is no more infection, so that was nice to
hear. I weigh a big 21 lbs and 4 oz. Once we got home I took
a nap and when I got up I played baby elephant (had a neb treatment) and
then mom came home and surprised me with a cake. Then when we were
all done mom and dad had another surprise for me...a new playroom!!!!!!
It's really cool it has all of my toys and books and it just for me.
I don't have to have all that grown up stuff in the way, cluttering my
space up, getting in the way of my toys! So far, a great day....
My cough is back 5.7.07
Last Thursday I started coughing
again and had a bit of a fever. My mom and dad started up the neb
treatments and the CPT again. I'm feeling better today, but I
still have a cough. I just have to get better for my birthday!
Today my mom and I were suppose to go to Waukesha North to make blankets
for B4SMA with the Interact Club, but we had to postpone our trip as
well. It's no fun being sick.
All better! 5.2.07
I'm feeling all better today!
I even did standing for the entire hour without any trouble. I
can't wait for my birthday party. We are going to the zoo to do
the "Walk With the Animals," it's an MDA event to raise money for
research and camps and other MDA needs.
Treatments to help Reagan get well 4.22.07...entry from mom
While in the hospital we were
taught how to do some chest physiotherapy exercises (CPT) for Reagan and
we were also taught how to give Reagan a nebulizer treatment of
Albuterol. We will do this every day, three times a day until
Reagan's cough is gone. The nebulizer is just a mask that goes
over Reagan nose and mouth that turns the Albuterol into a fine mist
that Reagan inhales. The Albuterol helps to open up Reagan airways
in hopes to loosen the "junk" in her chest. We follow the
nebulizer treatment with CPT, this is actually the most important part.
The CPT is called clapping I think and takes about a half hour to do.
Basically I clap on Reagan's chest and back in a number of places
helping her to move the "junk" in her lungs in efforts to get her to
cough it out. Reagan is getting better and better each treatment
at tolerating everything! She even got a cool fish mask...she
thinks it's an elephant and we sure aren't going to tell her
otherwise:-)
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