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Busy Little Girl 3.10.08...entry from mom

Reagan has been quite the busy little girl as of late.  Last Friday we met Ben and his mom for breakfast at McDonalds.  They were too cute chatting away and playing with the Littlest Pets.  Saturday Grammie Debbie, Auntie Jeannie, Sara, and baby Emma came by for a visit.  Reagan wanted to read Emma a book, but got pretty bossy when Emma tried to take it away from her..."no, no, no baby Emma, you no touch, it's my book"  I think is how it went.  Then Reagan and Emma rolled around the living room.  Today Jenny and Katie Julius came over for a fun day of playing and pizza.  I know Jenny from back in the day, she was the manager of some of my dad's teams at Edgewood.  Katie and Reagan got along famously from the start.  They shared and played so well together.  For lunch we went to the pizza place that Reagan enjoys and who do we run into but Dr. Dan.  He was their with his family celebrating his son's 4th birthday.  It was nice to meet his family and see him other than when Reagan is not feeling well!  Reagan and Katie ate and played and played and played...  When we got home Reagan asked if next time Katie can come over for a pajama party at the zoo.  Tomorrow Reagan's cousin Steven and Aunt Jackie are coming over to play and we'll all give Grandpa Steve a call to sing him happy birthday.  Needless to say Reagan is doing really well and getting a bigger and bigger appetite everyday.

The Wizard of Oz 2.24.08...entry from mom

This afternoon Reagan and I went to see the Wizard of Oz at Waukesha North.  Nancy got us tickets, but unfortunately was too sick to join us.  Reagan really seemed to enjoy the show. They had a real Toto and flying witches and monkeys.  I even received a compliment from the gentleman sitting in front of us as to how well behaved Reagan was.  One of my former student/player/Reagan's sitter, Kaitlin Cooper, her brother, Kurt, was the Lion.  Wow can he sing!  Reagan got to meet him backstage after the show and we got to visit with lots of people from North.  It was a nice end to the weekend.  Reagan is doing better with her eating everyday.  She has helped me make scrambled eggs and toast with Jeannie's Jam the past two days.  I think pizza may be her favorite, nudging out french fries.

Reagan's first haircut! 2.22.08...entry from mom

This morning was Reagan's first ever hair cut!  She did fantastic and looks adorable.  Kelly, who has been doing my hair for a few years did such a nice job.  She was so sweet and patient with Reagan and her leeriness of getting her hair cut.  After the first cut Reagan got more and more comfortable.  Reagan held Grammie's hand while I took pictures.  Reagan sang for us and loved looking at herself in the mirror and smiling and then shaking her hair.  BY the time I got in the chair to get my hair done Reagan was checking everything Kelly was doing and wanting to help.  It was lots of fun.

Thursday was the usual busy day with lots of therapy and music class with Miss Sarah.  Reagan did well in OT with Donna, she was tired, but tried really hard and did well eating yogurt all by herself.  Amie and baby Grady came over for lunch.  Reagan had fun telling baby Grady about all of the animals and trying to get him to repeat their names.  She sang to Grady and helped Amie change his diaper.

On Wednesday we had my transition meeting and met with Cindy from NBPS, Sara, Reagan's Birth to 3 coordinator and Anne to talk about Reagan and her strengths and development.  This meeting is the first step in hopefully getting Early Childhood services in the New Berlin Public Schools for Reagan.  Reagan was her usual charming self and talked and talked and introduced everyone to each other...too funny. 

All in all it was a fun week.  Reagan is trying to eat more by mouth.  I'm hoping each day will get better and better and she'll show more interest in eating;-)

GI Appointment 2.18.08...entry from mom

This afternoon we went and saw Dr. Biank, Reagan's GI doctor, to check in with things.  She is 25 lbs 5 oz and 3 ft tall!  What a big girl.  Deb, the nurse, treated Reagan's tube site with some silver nitrate to help with some nagging granulation tissue.  We talked with them about Reagan's tube feeds and how she really doesn't eat anything by mouth during the day any more.  We met with the nutritionist and went over her daily intake and her nightly tube feed intake and she then talked it over with Dr. Biank and we came up with a plan to try and get Reagan to eat more by mouth on a daily basis.  We will have to go back to weight checks, but if we can get Reagan to stay on the same curve and eat during the day that would be great!  I am just fearful of Reagan losing that skill, chewing and swallowing, and I want her to be able to sit with us and once she gets to school with her friends and enjoy snack time and lunch with them.  Tonight is the beginning of the process. We are cutting back 237 calories from tonight's feed and hoping that will give her an appetite tomorrow so she'll really want to eat a meal and some snacks throughout the day. 

Also, MJ, the sweet young lady who makes and sends out blankets to kids with SMA, B4SMA, is having surgery.  She has to have a trach done, and we want to wish her the best and a speedy recovery so she can get home soon!  Huggas MJ!

Happy Valentine's Day and relaxing weekend 2.17.08...entry from mom

Of course as soon as I say Reagan is feeling better she starts coughing and coughing.  We had been trying hard to prevent any sort of cough and junk in her lungs, but it managed to find its way.  By Thursday morning she was struggling a bit. We had an eventful Valentine's Day.  Reagan and I made a cake and some chocolate covered strawberries in the morning and had Speech with Beth Anne and then it was off to music class and back home for OT with Donna.  OT started off well Reagan and Donna were making Valentines for everyone, but about half way through Reagan started breathing pretty hard and was having difficulty sitting up and was getting really pale.  I ran back to her room got her Pulse Ox and quickly hooked it up to her.  Her O2 was about 96 and then just dropped into the mid 80's.  We got Reagan out of her chair and laid her down and helped her cough.  She finally climbed back up into the 90's, but she was to tired for any more OT.  Donna walked me through what to do if she dropped again and then Reagan and I watched Max and Ruby for a few minutes just to relax and then she took a nap.  Once she got up from her nap and we did her CPT and coughing she was happy as could be so we went to Pool Therapy and she did really well.  For a special Valentine's Day treat we stopped and got a happy meal  for dinner.  We have since been taking it easy and coloring a lot this weekend.  Knock on wood, but her cough seems to be getting better and Reagan is motoring all around the house telling me what to do!

Feeling better 2.12.08...entry from mom

We are feeling much better today.  Yesterday we made a trip to Dr. Dan's to check on Reagan's low grade fever and ouchie ears and cheeks.  Her tonsils were red and irritated so Dr. Dan did a swab, fortunately it was not strep, just a virus.  Reagan and I took a long nap in the afternoon and we also went to bed early last night and we are both feeling much better today.  Still some sniffles and coughing, but we are staying on top of the cough and doing her cold time protocol every couple hours to keep Reagan's lungs clear.  She did outstanding in PT and Speech today.

Big Girl 1.26.08...entry from mom

Thursday was a big day for Reagan.  She had another weight check and she is all the way up to 25 lbs. and 4 oz.!  Since she is doing so well she doesn't have to continue with the weekly weigh-ins!  Her music class started up again on Thursday, she had a great time.  We walked into the classroom and sat down and she said "Hi Miss Sara, it's me Reegee"  everyone started laughing.  She is such a cheese ball sometimes.  Grammie & Granpie Larson also came to visit and brought her a princess dress complete with earrings and tiara.  She certainly was in her element when we got her all dressed up.  She loved the earrings and kept shaking her head from side to side to make them dangle.  After her nap she had her pool therapy and dada even came with us.  Joe has never been able to see Reagan do pool therapy because it's during work, but he took off in the afternoon and came to watch.  She had fun showing off for her dada, Catherine laughed the whole time at her.  Monday I am going on vacation with my friend Nicole for a 5-day cruise to Cozumel then Belize City then back up to Fort Lauderdale.  I am certainly looking forward to some warm weather and a good night sleep!  Grammie Larson and dada will have fun taking care of Reagan, she is certainly looking forward to it.

Dada's home! 1.21.08...entry from mom

Friday night Reagan and I went to visit our friend Amie and meet baby Grady!  We had such a fun time, Grady is so cute Reagan could hardly contain her excitement of meeting him.  She even held him for a bit and when he started to fuss she sang him Twinkle Twinkle Little Star all on her own.  So sweet.  Joe got home safe and sound Saturday afternoon.  He said he really enjoyed Cape Town and the safari he went on was amazing.  He brought Reagan a cute little safari skirt and hat and myself a really cool necklace.  Once Reagan got up from her nap they played until she went to bed.  Reagan was very happy to see her dada!  Sunday we just hung out and watched the Packer game, Reagan even wore her Favre jersey and cheered Go Pack Go!

Standing again! 1.16.08...entry from mom

We had a huge morning-Reagan was able to get back into her stander for the first time since June!  After her surgery and all of her stomach issues and illness her legs, especially her knees got really tight and it was to the point where we couldn't even get her upright in her stander.  Unfortunately as her legs got better (lots of PT and daily stretching and wearing her knee immobilizers every night) she fractured her leg and was then in a cast for 5 weeks!  Well, today was the day and she did great!  She stood for about 15 minutes, but that's outstanding and will help her get back to the hour and a half she used to do on a daily basis.  She still has some tightness, but we are able to get her in and hope that standing will help with the last little bit (her heels come about and inch up).  After PT and some standing we went and played at Ben's for awhile and had a really fun time.  Ben is a little boy who lives in the area and also has SMA type II.  Joe called from Cape Town, South Africa this morning to tell us all about the safari he went on.  He sounded so excited and had story after story and then realized just how expensive his story telling was getting so he decided to tell us the rest when he gets home.  His meeting starts tomorrow and the he'll be home on Saturday.  Hopefully some day we can take Reagan to Africa and go on safari.  It was really cute on Sunday Reagan helped me pack for Joe and I told her that Dada was going to Africa and then 30 seconds later Joe walked in the room and Reagan asked him if she could "go to Africa to go to safari with you?"  Too cute!  Thanks Grammie Larson for coming and helping Reagan and I out on Monday afternoon!

Visit with Dr. Schroth 1.4.08...entry from mom

Today we took a trip to Madison for an appointment with Dr. Schroth for Reagan's quarterly check-in.  She is down 1/2 pound so we met with the nutritionist to look at her intake and make adjustments to help get her back on track.  They think it could also have to do with her months of bowel issues that have just been "resolved"  We also talked about ways to get Reagan eating more during the day.  She barely snacks most days, and if she continues to not eat by mouth she will lose that skill and we obviously don't want that to happen.  Then it was on to pulmonary stuff.  Reagan was pretty good for most of the day and of course she was coughing up a storm while we were in the office.  She is still really junky sounding.  Dr. Schroth actually got the respiratory therapist to come in the room and cough Reagan during our appointment.  In spite of the little Peanut being so sick she entertained everyone with her stories and singing in between fits of coughing.  To funny...  Dr. Schroth thinks Reagan's cold that began last week is RSV.  She made some adjustments to her BI-Pap settings and said that as long as we can maintain Reagan's O2 levels in the 90's we can continue everything at home.  If she starts to worsen and drops we need to call her and most likely we'll be checking out the new hospital for a few days.  Cross your fingers!

Happy New Year 1.2.08...entry from Mom

Happy New Year everyone!  Reagan has been trying really hard to fight her cold off and get all of the junk out of her lungs.  She has had a few rough nights. Last Thursday everything seemed to start, she had a rough night of sleep with her constant coughing.  By Friday night she had a fever, her heart rate was up and her pulse ox was in the 80's and low 90's all night long.  Thankfully Dr. Dan was in Saturday morning to check Reagan over.  She had some stuff in the bottom of her lungs so he wanted us to get a chest x-ray to make sure she didn't have pneumonia.  Luckily things looked good and we were able to go home with some medicine to make sure the junk in her lungs didn't turn into anything and instructions to continue our usual cold time routine.  Saturday night was much better than the previous two nights and we thought she was on the mend Sunday, but she had another rough night on Sunday and Monday.  She does seem to feel much better today and actually slept most of the night and only woke up twice.  She did well at PT with Anne this morning and I was able to suction a good deal of junk out this morning.  This afternoon some of my former players are stopping by to see Reagan and then tomorrow we have our usual busy Thursday with Speech, OT, and music, and hopefully Reagan will be getting her cast cut off for good.  I think she is going to miss her purple princess cast.  Friday we go to Madison to see Dr. Schroth for Reagan's quarterly check in.

OT and new AFO's 12.27.07

Today I had Speech and OT.  This morning at OT Donna brought dress up clothes so I could be like the ballerinas in the Nutcracker and we made snow flakes so we could dance like they do with the Snow Princess!  It was so much fun!  Then after my nap we went to NBT to get my new AFO's and have Jim make sure they fit correctly.  We could only try on the one for my left foot since my right is still in a cast, but it fit perfectly!  They are pretty cool, instead of butterflies they are yellow with elephants!  After I got done with that Anne said I could go and play in the gym.  Mama pushed me on the swing and then we played in the balls and I went down the slide.  It was lots of fun.  I've got a bit of a cold, but hopefully it won't last long! 

Christmas Celebrations 12.26.07...entry from Mom

We had a fun filled couple of days celebrating Christmas this year.  Reagan's Uncle Mike and Auntie April flew in from New York for a couple of days to celebrate with us.  Joe, Mike, April and Reagan went and visited Oma on Friday and opened presents and had lunch.  I unfortunately was home sick with a sinus infection, ear infection and strep throat.  On Saturday went on a Toys 'R Us shopping spree with Auntie April and Uncle Mike to get Reagan Christmas presents, that was fun, crowded, but fun.  Sunday morning we had gift opening round one with Grandma and Grandpa Imhoff and Mike and April, watched a sad Packer game and then went to the Milwaukee Ballet to see the Nutcracker.  Reagan was beyond excited.  She had been talking about going to the Nutcracker for about three weeks and has be anxiously waiting.  We had really good seats, and she was smiling from ear to ear.  She sat through the entire two hour performance and didn't say but one thing..."presents" when she saw the big presents on stage.  It was a great experience and we can't wait to do it again next year.  Monday morning Mike and April flew out and Grandma and Grandpa Imhoff went to celebrate with Oma.  We had a nice afternoon playing with Reagan's new toys and watching the Grinch.  Before bed Reagan got a plate of cookies and a glass of milk to set out for Santa then she made him a special card of her own.  We finally got her to bed around 8:00.  I think she was so excited for Santa that she got up at 5:00 am on Christmas.  After gift opening round two we were off to Grandma and Grandpa Larson's for Christmas.  We had a delicious lunch and then after attempting to get Reagan and her cousin Steven to nap we had gift opening round three.  Reagan got many wonderful gifts from all of her Grandmas and Grandpas and Aunts and Uncles and friends.  Thank you to everyone who thought of our little Reagan.  She certainly will be busy with new toys for months!

Today was back to our regular routine with PT at 8:00 this morning.  We hope everyone had a wonderful holiday and fun celebrating with all of your loved one.  Many wishes for a happy, healthy 2008!

New cast 12.20.07

Today we went back to Dr. Tassone's to get a new purple sparkly cast on.  Jeannie, the casting lady, used the tickle machine to cut my cast off then straightened out my leg and put a new one on.  They also took some more pictures of my leg and it looks like everything is healing exceptionally well and quick.  I go back on January 3rd to get it off for good hopefully!

Follow-up visit 12.13.07

This afternoon we went to visit Dr. Tassone to check on how my leg is doing.  They had to take some xrays, but it didn't hurt this time.  Dr. Tassone said that my leg is healing amazing well.  I have to go back next Thursday and they are going to cut of my purple sparkly cast and put a new one so they can straighten it out for the last couple weeks of healing so my hamstrings don't get any tighter and my contractures don't get worse. 

O' Christmas Tree  12.7.07

Today we went and picked out our Christmas tree.  It was cold outside, but it was still fun.  I helped mommy decorate it with lights and beautiful ornaments.  Then we watched the Grinch and had some cookies.  It was a fun day.

Very own power chair! 12.5.07

What a big day...Reagan got her very own "purple chair"

What a wonderful day for Reagan, it was just like her first steps...her very own power wheelchair was delivered this morning.  It was like Christmas came early!  Anne and Jeff got her all fitted and customized everything just for her.  She got in her chair at 8:30 this morning and wouldn't let me transfer her out until 2:00 this afternoon and that was just because she had to get her diaper changed and take a nap.  She was going here and there, up and down.  She is very cautious of Rajah and won't even drive it unless Rajah is at the other end of the room, even then she tells Rajah to "watcha out" or "move Rah-rah"  It even matches her pretty purple cast!  Check out her first spin in her very own chair!

Thanks to everyone for the get well messages and emails for Reagan.  She really is feeling much better!

Eventful weekend 12.3.07  (entry from mom)

We had quite the eventful weekend.  Daddy got home safe and sound from Singapore Saturday night.  Unfortunately with the weather being so nasty, after landing while his plane was taxing to the terminal it got stuck.  Joe had to sit on the plane for 3.5 hours before they finally got the plane towed out and to the gate.  While we were waiting for Joe to come home Reagan and I were swinging in the hammock swing watching it snow and listening to Christmas music.  It was actually lots of fun until it gave way and we fell.  I heard a noise, looked up and crash we were on the floor.  I tried to wrap myself around Reagan and absorb the fall along with the big metal bar on my face.  Reagan was crying and it took me a minute to process.  I got us up and checked her out.  She said she was okay so I picked her up and she started to cry.  She was holding her knee so I got some ice and gave her some Motrin and laid her down to watch Max and Ruby.  After about an hour I called the on-call doc and he said it was most likely a sprain or deep bruise, but if I thought we should get x-rays done he'd call and I could take her to the ER.  Well, she seemed to be fine when she was just laying there and the weather was so bad I thought I'd just wait the night and go from there.  She didn't sleep well, but Sunday when she woke up she said that nothing hurt, even though she cried every time I changed her diaper.  Joe and I decided to wait and call Dr. Dan first thing Monday morning since he would know her best and then we wouldn't have to go through all the SMA explaining to a random doc in the ER.  We called first thing Monday morning and got right in.  After some examination and uncomfortable x-rays we found out she had a distil femur fracture on her right leg directly above her knee.  Dr. Dan called over to Children's Ortho and got us in right away to get Reagan casted.  We were told that because of the location and type of fracture there was a possibility that Reagan may need surgery to set it properly.  Needless to say Joe and I were sick to our stomach with worry.  Because Reagan can't bear weight we didn't have to go that route.  They casted her leg and we will go back next Thursday to get more x-rays to make sure things are healing properly.  They asked Reagan what color she wanted and before they even brought out the color stick she said purple!  Cathy even added sparkles to make it a princess one!  Because of Reagan having low bone density it will most likely take longer than the usual 4-6 weeks to heal, but we'll keep our fingers crossed that it doesn't.  It was certainly a long day for all of us, and with all that was going on Reagan missed her nap, but you really would have never known.  She was such a little sweetie all day long.  Now that I know she's okay I'm starting to feel some pain from the fall, but we are tough girls and will be okay!  Reagan even wanted to go to craft class with daddy.  She made some really cute candy canes and Miss Christine even gave her a real one at the end.  We are saving it for tomorrow...it's time to get some sleep.

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 out 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 an 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:-)

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

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.

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