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We wish you all a happy and healthy 2009...hope for cure!

Thanking the Brookfield Fire Departments 12.29.08...entry from mom

Our local MDA asked if Reagan and I would mind bringing goodies over to the three Brookfield Fire Departments as thanks for all they do to support and raising funds for MDA during the year...especially the "Fill the Boot."  Reagan had a great time going to the fire houses and saying hi.  At the Fire Station on Lily Rd. Reagan had the best time zooming around and singing for the guys their. 

Wonderful Christmas 12.28.08...entry from mom

We all had a wonderful Christmas this year.  Reagan was spoiled and pretty much got all of the toys she wanted between what Santa brought and family got her.  Reagan got her number one wish...a dollhouse along with the furnishings.  As well as too many other gifts to even begin listing.  It was funny on Christmas morning when she was opening gifts and would open up a box with clothes in it, she would just mumble thanks and immediately put it to the side waiting for the next gift to open.  We had a nice low key day, and have been very blessed to healthy and happy this holiday season. 

Waiting for Santa 12.22.08...entry from mom

Last week started out with great news, Reagan is all done with serial casting!  Last Monday after school I took Reagan's casts off for the last time ever (hopefully) and we headed to Hanger and Jim had Reagan's new AFO's all ready and waiting for her.  She was so excited, they are light purple with butterflies, and fit her perfectly.  He also had Reagan's new TLSO ready for her first fitting, he only has a few adjustments to make and we should have it very soon.  Wednesday was Reagan's class gingerbread party and all of the parents were invited. The kids sang two songs and then we made milk cartons into gingerbread houses...what a great idea!  Reagan and Joe made one together, with a ramp up to the house and all.  Seriously, Joe thought they were done and asked Reagan if the house needed anything else and she said yes, a ramp.  Then on Thursday the snow came, and came and came...finally Friday late afternoon we started to dig out.  Reagan was so excited to see all of the snow and couldn't wait to get out and play.  We made snow angels and went sledding.  She looked like Randy (A Christmas Story) in all of her snow gear, and really couldn't put her arms down.  She is such a little peanut when I laid her down in the snow to make he snow angel she barely made an indent and was all sad when I picked her up to look at her angel.  So, we tried it again and I kind of dug her arms and legs in this time...she was very excited about her second try:)  On Saturday Joe, Josh, Reagan and I tried to brave the stores between snow storms to finish up with last minute gifts...yikes!  We managed to get out of Best Buy in one piece and Reagan was able to sucker Daddy into getting a new Wii game...Littlest Pet Shop...and playing as soon as we got home!

Now it is bitterly cold and they are forecasting another 3-7 inches tomorrow.  As long as Santa can make it through we'll be happy.  We hope you all have safe travels and a wonderful holiday.

A long overdue update!  12.14.08...entry from mom

I'm not sure where to start, things have been busy.  I'll try and keep it concise. Thanksgiving was nice, Reagan even tried a bite of turkey and some mashed potatoes, we were so proud of her.  She did struggle with them, but worked it out and swallowed all of her food.  Speaking of swallowing, her results came back from the Swallow Study and she is doing just fine and can continue eating by mouth! 

We celebrated my 31st birthday (yikes) Leah's 3rd birthday, Uncle Ryan's 25th birthday and Evan's 2nd birthday...parties and cake all the way around!  Reagan had a great time at Leah's party.  It was so funny to see them wheel around and have their girls only powwow in Leah's room.  At Evan's birthday party this past weekend Reagan loved seeing all of her family and playing with her cousins. 

The serial casting has been difficult at times, but has really paid off.  On November 23rd Reagan was able to get up in her stander for the first time since August!  She stood for about 15 minutes and was in some pain, but has since worked up to almost an hour, no problem.  The got her new big muscle (TLSO) and we have had some issues with it, so to make a LONG story short, she was fitted for a new one last Monday and it should be ready soon.  In early November Anne asked if we could bring Reagan to be a "demonstrator" for a course by Mary Massery that NBT was hosting at Marquette.  It was awesome!  Reagan was really cooperative and a good sport and Joe and I along with all of Reagan's therapists (Anne, Bethanne, and Donna) got a lot of good new stuff from Mary.  It was in this session that we were able to pinpoint the issues with Reagan's TLSO to have them corrected.

Reagan has really enjoyed the snow and had the best time picking out our Christmas tree this year.  She couldn't wait to get home and decorate it and fill the advent calendar with chocolates.  St. Nick was good to Reagan as well, she got a big bucket of play food and a My Little Pony advent calendar.  Every morning she wakes up and that is the first thing she asks to do..."do you think it's going to be a pony or accessory" she says.  We also began making our cookies and candies this past weekend.  Reagan got more flour and powdered sugar on the floor and her wheelchair than in the bowl. 

Tomorrow should be the final day of Reagan's casts.  After school she has OT and then we'll cut it off and head to Hanger to pick up Reagan's new AFO's...purple with butterflies!

A new cast 11.2.08...entry from mom

Tuesday, Wednesday and Thursday nights were very rough for Reagan.  She was in a lot of pain and discomfort in her new casts.  Her right leg/knee was really bothering her, so much so that her pain meds didn't help for more than an hour or two.  Finally Thursday afternoon I took her back to NBT and Anne recasted her leg.  It's Sunday and Reagan is doing so much better, and finally getting some sleep!  We had a really nice, relaxing family weekend of hanging around the house...it was awesome!  Monday I have the volleyball banquet and Thursday Reagan has her Swallow Study, other than that it should be a nice quite, getting back to the usual routine kind of week!!!!!!!!!!!!!!!!!!!

Casting Round Two 10.28.08...entry from mom

Reagan got her second cast put on this afternoon, and guess what color she picked?  Pink?  She is branching out, what can I say.  She didn't even want purple, and for next week she already picked out blue.  The great news is Anne was able to get her legs 10° straighter!  We also stopped the VPA and Reagan is doing much, much better.  She is back to her old self and it is so great to see.  She had another great week at school and my back is doing so much better, thanks for the get better emails:)  Tomorrow we will be heading to Kimberly for Grandma Roemer's funeral.

Party Girl 10.26.08...entry from mom

Reagan was a busy party girl this past weekend.  On Friday Daddy and Uncle Josh took her to the Halloween Party at NBT where she met up with Leah and Benny.  They were so cute in their costumes!  Reagan got to dance and even had a cookie with purple frosting.  Saturday morning we went to Alexandra's 4th birthday party at the Betty Brinn Children's Museum...again lots of fun!  Reagan got to dance and do the music for the puppet show and be a princess in a play and make a cool kaleidoscope drawing on the computer and make some crafties!  What a great party:)  On Sunday our neighborhood had trick-or-treating so off we went.  We made it to the first house and it started sleeting/snowing...seriously.  Needless to say it was a very short lived outing.  We stopped by Grandmie and Grandpie Larson's for some M&M's and then came back home and helped hand out candy to the other trick-or-treaters.

Grandma Roemer March 17, 1923-October 23, 2008...entry from mom

Today my Grandma Roemer passed away and is now at peace.  My mom, Reagan and I met my Aunt Jeannie and visited with Grandma early in the day at St. Paul's.  All though she couldn't talk with us I know she heard us and just loved listening to Reagan sing to her and enjoyed the pretty picture that Reagan drew for her.  We left late afternoon and minutes after we walked in the door my mom's ceel phone rang, it was Aunt Jeannie telling us Grandma just passed away.  We love you Grandma.

A weekend with the girls 10.19.08...entry from mom

This past weekend, Joe, Josh and I were suppose to be going to Las Vegas to see Jimmy Buffett.  Unfortunately about two hours before we were going to leave for the airport I threw my back out while trying to transfer Reagan from her wheelchair to the changing table.  Needless to say I couldn't move let alone get on an airplane.  I gave my ticket to my dad and my mom stayed with Reagan and I and took care of the both of us for the weekend.  Reagan did a great job helping take care of me all weekend, she told me not to worry she'd call Dr. Dan and he'd take care of my back.  Love her!

What is Reagan going to be for Halloween 10.13.08...entry from mom

Last Thursday Reagan saw Dr. Schroth for her 3 month check in.  Dr. S didn't really like the look and sound of Reagan so we are still working on what is causing this almost constant illness.  Unfortunately her cough is coming back and she just is having a hard time getting back to her usual self.  Reagan had a variety of labs done this morning, and all of the results have come back normal.  Tomorrow she goes in for an Upper GI and she will have her Swallow Study in two and a half weeks.  In the meantime she was started on another round of antibiotics to try and knock the "yuckies" out.  She is on and off with a fever, but Motrin seems to be helping to keep it under control.  Her legs have been bothering her, so I am really hoping the serial casting will so the trick.  I know it will take some time and may hurt a bit on the way, but in the long run I hope it will be for the best.  Despite it all Reagan is such a wonderful little peanut.  She had a great morning at school and so much fun last Friday at Bat Zoo Class with Alexandra.  Now our big dilemma is what Reagan's going to settle on for her Halloween costume?  So far it has ranged from a spider to a fairy to a fish to a witch and then a pumpkin?  She's three, what can I say:)  We also want to wish Grandma Helga a very happy birthday today, even though she said she stopped having them years ago!

Back to school and getting into the swing of things 10.6.08...entry from mom

Today was Reagan's first day back to school and back to her routine.  She was so excited to go to school, she really does love it!  After school she had an appointment with Dr. Tassone, orthopedic, to check on her back and legs.  Sadly her curve has gone from 13° to 35°.  She was immediately fitted for a new TLSO, and that should be ready in a few weeks.  Her legs are also very tight so she will be starting serial casting next week, followed by serial bracing.  Serial casting will be a series of casting for both of Reagan's legs that will be for a few weeks to help continuously, passively stretch Reagan's legs and hopefully avoid anything more serious.  She is such a tough kiddo, I'm sure it won't phase her.  I'm going to get some sparkles to rub into the casts and that should make them super cool! 

Happy Birthday Sophia and Elyse 10.5.08...entry from mom

Reagan and I went to Sophia and Elyse's 5th birthday party today.  They wore their princess dresses and had a really cute princess cake.  Reagan had a fun time eating lunch and cake with the gang and watching the girls open their presents.  They both got a Baby Alive and loved giving her a bottle and waiting for her to pee so they could change her diaper.  I think they went through all the diapers they got before I even left:)  Now Reagan wants one of course! 

Time to relax and Reagan's first boat ride 10.1.08...entry from mom

As lovely and fun as a wedding is, it is kind of nice when it is all over and you can just relax and enjoy, and that is exactly what we all did the next couple of days.  The house was hopping and busy on Monday, lots of family and friends.  Reagan seemed to always have someone new to play with and show off all of her Little Pets to.  I think she got the biggest kick out of playing with Abe, Mike's best man.  Later on that night I decided to get out her Mickey Fish Pond that I had just bought before we left and told her it was for the trip.  I pulled it out, put in the batteries and nothing.  April's brother, Marc, and Uncle Mike figured out what was wrong and rewired it and got it running.  After about 45 minutes they got it working for Reagan.  She was so excited and played with it for a whopping 10 minutes, then she wanted to watch Dora.  Joe's Uncle Patrick and Marc just looked at each other smiled and the games began.  Next thing you know everyone is standing around the table watching them play this fishing game...good times!

Later that week the weather was beautiful and Uncle Mike took us out on the boat for about an hour.  Reagan really enjoyed it and kept yelling to go faster, she even got to sit and help Uncle Mike drive the boat.  She played Table Tennis and Pool and Foosball and painted and "did all kinds of stuff" as she explained to me.  Joe, Reagan and I took Mike and April out for dinner, I think Reagan wanted to go more than any of us did.  She just wanted to eat chips and salsa and guacamole at the restaurant she told us all day long.  It was so nice being able to stay in the guest house and spend time with everyone, we really had a great time. 

The Rehearsal and Wedding  9.28.08...entry from mom

Saturday Joe, Reagan and I had to pick up a few last minute things for Reagan and get Joe's tux before the rehearsal.  Reagan didn't get in much of a nap, but was still pretty good and lasted through the dinner.  She did a good job in rehearsal going down the aisle by herself.  Dinner was a bit challenging since she was getting crabby, but I had picked up a Littlest Pet Shop earlier that day and was saving it for just the right moment...it was right then and worked wonders.  Once the cake was served Reagan dug in and then it was the sugar rush that kept her chasing Grandpa Imhoff and cruising around and silly until we left.  Finally the big day arrived, I felt like I was going nonstop from the moment I got up, trying to get my hair done, get Joe moving, get Reagan up and running and then getting us all dressed and out the door in time for pictures.  I spent about an hour curling Reagan's hair...it looked so cute, unfortunately the humidity won out and it feel by the time we started with pictures.  I think she looked adorable anyway with the rose hair piece April got her.  My mom had made a slip cover, so to speak, for Reagan's chair to make it look nice for the wedding.  When I put it on Reagan called her chair a "carriage, just like for a princess."  It really made it look special.  Pictures went well, but after a few dozen this 3 year old was ready to move on to something else.  The wedding began shortly there after and Reagan did a great job and went down the aisle all by herself.  She didn't really smile, she just had the shifty eyes, with the who are all these people? look on her face.  Everything looked beautiful...April and Mike, the ceremony, just everything.  While Mike and April were saying their vows a Monarch butterfly flew right in the middle of the flower arrangement in the front and Reagan was so excited, I had to sush her.  Reagan walked out with Grandma Helga and smiled on her way.  The reception was wonderful, more great food, lots of fun and dancing.  Reagan and April danced, oh, it was too cute!  It seriously was the best wedding I've ever been to!

Road Trip 9.25.08...entry from mom

We started our trip out to Connecticut for the wedding a day later than planned so we drove straight through.  My mom and dad let us use their Garmin, it was sooo helpful and made the trip much less stressful.  We stopped three times and seemed to time things perfectly as far as rush hour traffic, however it was dark and rainy through the winding, up hill roads of Pennsylvania.  Unfortunately, Reagan didn't sleep very much and got sick in the car.  Her poor little tushy was really sore, and we were all so happy to arrive at the lake house at 2:30am!  Mike was up and waiting for us and helped us get all of Reagan's equipment in so we could get Reagan to bed quickly.  Thankfully Reagan slept in Friday morning so we could all catch up on our sleep.  Friday was a fun day, everyone was starting to arrive and Willy, April's dad, made an awesome Italian dinner...WOW, I don't think I ever ate that much pasta before.  Reagan got Auntie April to give her a chocolate ice cream cone and so generously shared it.

Home sweet home 9.21.08...entry from mom

We are all home and resting.  I always think it's funny that you go to the hospital to get better and get rest, yet are so tired when you get home:)  Reagan seems to be doing much better and had a good night's rest.  Hopefully she will be 100% in no time and even make it to school this week.  We are planning on leaving Wednesday for the wedding!

MDA Lock-up and now in the hospital 9.18.08...entry from mom

Reagan had a great time at the MDA Lock-up at the Claim Jumper in Brookfield Square.  She was the "MDA poster child" for the event so to speak.  She took pictures with all of the local business people that participated in the event...such a cheese ball and trooper!  We were there from 11-2:30 and she really did well and "worked the room" with all of her smiles and cruising around in her chair and story telling.  Too funny!  She also was in the Waukesha Freeman with her dad from the Rally for Reagan event at North the night before. (I am working on getting it scanned and up on the website)

After our eighth lousy night of sleep, coughing and alarming we went and visited with Dr. Dan and after he consulted with Madison we decided it was best for Reagan to be admitted.  We are now in the PICU so they can keep an eye on Reagan and help get rid of this yuckiness so we can get her up and running at full speed again.  She misses school and so desperately wants to go to the wedding!  She has the dress all picked out:)  I on the other hand...  She is sleeping so very well right now, which is awesome, I hope she has a great night and we get to go home soon.

Rally for Reagan at North 9.16.08 (entry from mom)

Reagan is still under the weather, she is really having a tough time kicking this one.  She stayed home from school Monday and today, and we will keep her home tomorrow as well.  She has a very nasty cough and we definitely don't want to spread this.  This afternoon she was feeling better after Bethanne came over to the house to work on her ribcage and then Anne came by and we did some standing and stretching.  Since she was seemingly up for it Joe and Uncle Josh brought her to Waukesha North for the volleyball game tonight because Cooper and Peanut were hosting a 'Rally for Reagan' night.  Reagan wanted to help me coach and was sad when she couldn't sit by me during the game.  During warm-ups I let her come sit next to me for the first 6 minutes until our court time, then I had Joe and come get her as I went out to toss to the girls and Reagan just drove on out right behind me to help and cried and cried when Joe came and got her.  She did come and stand with us coaches for the National Anthem that seemed to make her happy.  Mid way through the night Coop got Reagan on the microphone to thank everyone for coming and then it was a big collective "awe" that I heard as I was handing in the line-up.  They raised over $500 for FSMA tonight...thanks to everyone for supporting the event and a special thanks to Coop and Peanut, we are so touched that you continue to think of Reagan and are always there supporting her, as your ole coach and teacher I am so proud of the young women you are.

Tomorrow if Reagan is feeling better we will be going to the Claim Jumper for the MDA Lock-up that Reagan has been asked to be at!  

Sick again 9.14.08 (entry from mom)

Reagan is under the weather once again.  We are glad it isn't anything too serious, just a viral cold, but she was quite miserable last Thursday night and all day Friday.  We reluctantly left Reagan at home with Grandma Larson Friday and went to the Sheppard's SMA Scramble for a Cure in Chilton with Grandpa Larson and Uncle Josh.  My mom and I were on the phone every 45 minutes and just got to the point that I called into Dr. Dan's office to see what to do at that point.  It's hard to gauge things when I'm not right there seeing her for myself, so after talking with Dr. Dan we decided it would be best for him to just take a peak and make sure things were fine.  Joe, Josh and my dad quick jumped in the car and left so Joe could take Reagan in.  She seems to be in better spirits today and hopefully will sleep well tonight.  I'm not looking forward to tomorrow when she finds out she isn't going to school?!

A former teammate of Joe's wife, Cathy, is coordinating the Imagination Station, a community built playground in Oconomowoc, that will be universally accessible for ALL children to play shoulder to shoulder.  For more information about this awesome project please go to www.oconomowocplayground.org

On a sad side note...One of Reagan's favorite nurses and Dr. Schroth's SMA research coordinator, Lisa P's husband unexpectedly passed away Friday night from a massive stroke...our thoughts and prayers are with Lisa and her sons.

Play dates and parties 9.7.08 (entry from mom)

Reagan and I were certainly on the go this past weekend.  Friday was swimming in the morning a lunch play date with Benny and a volleyball game in the evening.  She did fantastic at swim and had lots of fun zooming around with Benny and throwing rocks and shooting hoops.  Watching Ben and Reagan both zoom around in their power chairs just made me smile:)  Reagan and I went to see Uncle Josh in action as the new SID at Alverno's volleyball game.  Reagan got M&M's and some popcorn to round off the experience.  Saturday we headed to Kimberly with Grandma and Grandpa for a surprise Anniversary party for Aunt Jeannie and Uncle Dan.  It was at a park and Reagan got to play with her little cousins and run the bases with Emma and swing with Evan and see Ariya's baby girl...just a ton of fun all around.  It didn't take long for her to crash on the way home, even though she was adamant that she was not tired and did not need a nap.  I think Saturday night was the first night in a month that she slept through the night, wow what a difference that made for the both of us.  Sunday was Grammie Larson's birthday and we had a special birthday brunch at our place.  It was great, Jackie, Ryan and Josh took Reagan outside and played football with her so I could quick get dressed and finish up with setting the table and icing the cake.  After brunch we watched Brett the Jet and then after everyone left Reagan and I took a nap!  Joe got home tonight from his long weekend in New York and had dinner with Reagan and read her some books for bed!  Just a nice weekend!

First Day of School 2008, MDA Telethon and some new friends 9.2.08 (entry from mom)

We meet a new family, the Elsner's this past weekend.  They live near us and have two little girls, one is Reagan's age and the other, Peyton who is 4 months old was just diagnosed with SMA.  They came over for dinner and brought Reagan a really cute Disney Princess mirror set...of course she was all over that.  We got to play with baby Peyton and enjoy dinner.  It's hard to meet people under what are such sad circumstances but it nice to have other families who are in that same boat so to speak, to talk with.  Jen, Peyton's mom, and I are going to get all of us girls together for a play date soon!

Reagan also made her MDA Telethon debut this past Labor Day!  We were asked to come and present the check from the money raised at the MDA Walk with the Animals this past May.  Reagan was in fine form and wasn't shy on set.  They brought us out on stage and got us set up and Reagan grabbed the mic and sang a little "Twinkle, Twinkle" and thanked everyone for coming...  We are going to try and get the clip on the Home Movie web page this weekend.  I know, I know I need to put some recent videos on their... I'll try and do that as well.

Reagan was so excited for school she could hardly sleep last night.  Of course that meant she could also hardly get up this morning either.  Joe and I took her to school and she immediately drove right over to Mrs. Burnett and her buddy Morgan.  She barely even noticed Joe and I leaving, and we had to go and get the kisses and hugs from her.  Our last little butterfly was all ready to come out so we brought him to school so Reagan's classmates could see the butterfly come out of it's chrysalis, which they did get to see.  I think Tuesdays are going to be our super busy day this year with school, PT, Speech, quick get over to Grammie's so I can go to volleyball practice and then home for dinner and bed...and in a few few weeks add crafty class with Daddy in there.  Reagan also got her very own t-shirt to wear at the North volleyball games, it's just like the big girls!  She wanted to wear it to bed last night and everything.

Back at it  8.27.07 (entry from mom)

We are all back at it so to speak.  Things have been pretty busy at the Imhoff household.  Last Monday Reagan had her GI check in.  She is 26lbs 4 oz and 36 inches tall.  She had fun with the nurse and nutritionist and read and played while the other talked with me.  Then we made a big paper pirate hat before Dr. Biank came in.  She had fun wearing it and arghing like a pirate, then she played pirates with Dr. Biank for a bit and asked for his stethoscope to listen to his breathing?  She will need to have a follow up Video Swallow Study to get some more info, but we are waiting for the pneumonia to be long gone before we do that! I also started volleyball last week back at Waukesha North.  It is so fun being back, and I am so lucky to be a part of an awesome coaching staff and the girls are great as well.  For the first week we had two a days so Reagan pretty much spent her days with Grandma Larson getting rest and back to herself.  I have to say that I think working moms and dads are just unbelievable.  I was just coaching volleyball and I was/am beat.  To come home after a long day of work and have to go right into mommy and daddy mode is tough.  Now that Reagan is feeling better we have managed to find time to get her school supplies.  She picked out all of her folders and her backpack all on her own...a pink and purple Hello Kitty one!  I actually had to put it in the closet because every time she saw it she asked if it was time to go to school yet!

Last Friday Reagan had to have a blood draw for her VPA labs.  When it was her turn we went back to the room for the draw and I asked her if she wanted to sit on my lap for it (like usual) and she said "no mommy, I'll just stay in my chair" very matter of fact.  She did let me hold her other hand, but I was amazed how well she did, a little sad that she is growing up though.

Today we got to go to Glen Park and meet with Mrs. Burnett and co. just for a refresher with venting Reagan and such.  Reagan was so excited to see Mrs. Burnett and everyone else.  She wheeled into her classroom and just seemed so comfortable and happy to be back.

Just in...8.16.08  Thank you all!  We are excited to let you know that with your help and contributions to Golf FORE a Cure 2008, we have raised and are donating $25,000 for Spinal Muscular Atrophy research.  In the past two years since Reagan’s diagnosis, we have held three Rally for Reagan Golf FORE a Cure events and a half dozen other Rally for Reagan events that have raised well over $60,000 for FSMA, not to mention the countless individual donations that have been made in honor of Reagan these past two years.  We are so very appreciative of your generosity and support of Reagan and her fight against SMA!

On the mend 8.16.08...entry from mom

Reagan is doing much better as the week has gone on.  She is still coughing quite a bit, but it's a good cough that is moving all of the yucky stuff up and out of her lungs.  She was singing the Dragon Tales song and her and Joe made a tent out in the living room this morning.  She is certainly feeling so much better.  She really wants to go to the "pizza place" aka Stone Fire Pizza Co., and keeps telling me she is all better and can go, but then starts coughing immediately.  Too funny!  Once she's all better we will have to go and get her school supplies because September will be here before we know it and she'll be back in in Mrs. Burnett's classroom...oh, she can't wait! 

Monday will be a big day for me, volleyball starts!  The new girls volleyball coach at North asked if I could be her assistant.  Joe and I talked with my mom and dad and they kindly agreed to watch Reagan everyday after school while I go to practice.  I'm really excited to get back into the gym again:)  Reagan has come with me to a few open gyms and likes playing "bolleyball" and the girls all thought she was really cute too!

Pneumonia in the summer?  8.12.08...entry from mom

Sunday Reagan and I went over to Kate and Leah's for the afternoon to play and meet some of Leah's other family.  The kids had fun and it was too cute when Leah, Reagan and Leah's cousin all laid down for a nap together...some napped more than others (yours truly just wanted to keep watching Curious George)  Reagan was not going to nap and she was all set to wake up Leah so I took her home for a nap, however, she fell asleep on the way home for a whopping 10 minutes and I guess that was it for the day's nap.  Monday morning Reagan woke up with a slight cough and runny nose and watery eyes.  I thought it was just allergies so I coughed her and suctioned her nose and went about our day with PT and shopping.  While we were out shopping she pretty much flopped over and said she couldn't sit up.  I tilted her chair back and drove it out to the minivan for her.  She fell asleep on the way home and by the time I got her inside she had a fever of 102.9.  I gave her some Motrin and laid her down for a nap.  When she woke up she seemed better and had dinner with us.  We turned on the Packer game and laid her down on the couch with Grandpa while Grammie and I change the sheets on her bed.  In that 5 minutes she fell asleep again and was just radiating heat...now a temperature of 103.9.  Yikes!  We kept up with her cold time protocol and got through the night.  Today was up and down, but her fever never quite went away.  I finally called Dr. Dan's office after Reagan saw Bethanne.  We went right in and all of a sudden Reagan was clapping and singing and so excited to see Dr. Dan.  Unfortunately we found out she has pneumonia.  She is trying to rest and is on some strong antibiotics to kick this and get better.  Hopefully she'll be back to herself in no time!

Golf FORE a Cure weekend 8.3.08...entry from mom

What a beautiful day for golfing with family and friends!  It was a bit "sweaty" outside according to Reagan, but it was a fun filled and very successful day.  We we very happy and honored to have four other SMA families join us at the outing this year, it really made it quite special.  Interestingly enough the Reagan's Grandma and Grandpa Imhoff won the mixed flight and Ben's Grandma Nelson was on the women's flight winning team and his Grandpa Nelson was on the men's flight winning team.  Reagan got a chance to greet the golfers in the morning before they headed out to the tees, I unfortunately missed it, but heard from numerous people that it was really cute.  Once dinner was wrapped up Reagan got back on the mic and actually was the one to finally get everyone's attention so we could begin the raffle and hand out the trophies after both the club pro and I had tried several times.  She really took to public speaking and wanted to talk on the mic more and read off raffle ticket numbers for me, for the sake of time I did it, but we let her thank everyone and send them on their way.  We are really lucky to have such wonderful, supportive and generous family, friends and co-workers, thank you, thank you, thank you for helping to find a cure!

On Saturday Reagan got to have a sleepover with Grandma & Grandpa Larson while Joe and I headed to Marshfield for Mike and April's engagement party.  It was a fun time.  Sunday we made the trek back home and were happy to just all crash and go to bed after the long weekend...and what a wonderful weekend it was.

Busy, busy, busy 7.28.08...entry from mom

We have been doing a lot of running around getting ready for the outing this week.  Reagan is doing fantastic,.  She did have a bit of a struggle with her blood work this week.  They had a difficult time finding a vein, but 15 minutes later she was as good to go as can be expected.  Luckily I had some M&M's in my purse to help her cheer up.  She had some fun play dates, one with her pal Megan and then cousin Steven and then Cooper watched her Saturday afternoon.  Tomorrow we should see butterfly #4 hatch.

A weekend with Daddy 7.21.08...entry from mom

This past Friday I flew to New York for April's shower and Reagan and Joe had a daddy-daughter weekend.  Reagan brought me to the airport and started crying the second I shut the door, so sad.  Joe said that she was fine by the time they hit I-94.  It sounds like they had a lot of fun playing My Little Ponies and coloring.  Joe even took Reagan to Toys R Us to get a new My Littlest Pet Shop toy.  Uncle Josh was also around to help.  Joe said that they watched the British Open and Reagan started cheering for Tiger, since he wasn't golfing Joe had her rooting for Greg Norman.  I think she also got her fill of Wii.  I had a fun time at April's shower.  Even though it was a quick weekend it was still so nice to visit with Mike and April and meet her family.  I flew home Sunday afternoon and Reagan and Joe were waiting at the end of the concourse for me.  Reagan made me this really super cute card.  I was so happy to see my little peanut. 

Only a week and a half until the golf outing! 

Happy Birthday Dear Daddy...Happy Birthday to you!  Love Reagan and Mommy 7.17.2008

Amsterdam and Butterflies 7.16.08...entry from mom

We have had a lot going the past week and a half.  Let's see the day we were leaving for Amsterdam I went to clean out the butterfly house and add another stem of milkweed for the week and noticed we had a teeny tiny new friend on one of the leaves...another baby caterpillar!  We all just laughed and Reagan was ecstatic and barely even said good bye to us as we were leaving. 

We had a nice time in Amsterdam, Joe worked, but had two days to hang out check things out with Josh and I.  It was rainy and unseasonable cool for the majority of the trip, but it was still nice to get out and about.  We were lucky to have a friend that lives in Amsterdam take us out two nights.  We met up with Kuna the first night we were there...it was so nice to have someone that spoke Dutch that first night.  Most people know English, but the bar we ate at one had the menu in Dutch.  We went to museums and the Anne Frank house, The Hague, Delft, and walked and walked. 

Our friend Jenny, Katie's mom, made Reagan this really cute bag for Reagan to hang on the side of her chair to carry things around and easily access them herself.  It's purple gingham, totally Reagan!

Our first butterfly "hatched" while we were gone.  My mom and dad said Reagan was a bit unsure and didn't want to hold him, she just wanted to look and let him be with his friends outside.  Caterpillar number 2 turned into a chrysalis while during that time as well and he "hatched" this morning.  Joe was actually the first to notice him just coming out.  Reagan seemed pretty excited and loved the "beautiful butterfly."  While we played at the table she wanted all of her buddies to come play to, so I brought over the butterfly house and she drew them pictures.  We took out Fuzzy, that's what she named the butterfly, why I don't know, and then we took out the caterpillar, which she later named Stripey and let them walk around on Reagan orange paper.  She was still a bit hesitant with Fuzzy, but really got a kick out of Stripey.  Soon after it was time to let Fuzzy go and make some friends.  Now I'm in getting ready of the outing mode. 

Happy 4th of July 7.4.08...entry from mom

We took Reagan to the New Berlin Mini Parade at 9:30 and she had fun wheeling around her little chair.  Then daddy took her to the main parade and after about a half hour Reagan wanted to go home...I think it was too warm for her.  After her nap Leah and Kate came over to watch the fireworks.  Uncle Josh entertained the troops until the main show at 10:00 the girls did a pretty good job being up so late and they really seemed to enjoy the show once it started!

Now we are getting ready for another week...Joe and I along with Josh are going to Amsterdam this week (Joe has work there) so Grandmee and Grandpee Larson are coming to stay with Reagan for the week.  I've been trying to get things in line for the outing as much as possible...hey golfers sign up!

We hope you all had a wonderful 4th of July weekend!

Some new pets 7.3.08...entry from mom

This morning when we went to NBT for OT Reagan had a really cool surprise waiting for her.  Lois (Greg's mom who gave us his stander) had two caterpillars and one chrysalis for Reagan.  She also made this awesome little story book called "Reagan's Butterfly" that she personalized just for Reagan.  The story is too cute and tells the life and cycle of a Monarch Butterfly named Tiny that Reagan cares for.  I've lost count how many times we have read the book.  Lois took the time to walk us through what to do and explained to Reagan what was going to happen, Reagan was all smiles!  I had to bring our new pets out to the car so Reagan could get some OT done.  Donna had to make some adjustments to her wrist/hand splints to give her thumbs more support.  Then they made fireworks with glitter and glue, they turned out really cute.

When we got home we brought the caterpillars outside to check them out and put the big one in the house with the chrysalis.  Reagan finally was ready to go inside, but not without her new friends.  Once we got inside I asked her what she wanted for lunch and she said she wanted leaves just like the caterpillars, so I went and got a piece of lettuce.  She took one look at that and decided she'd have a pb&j sandwich instead:)  After lunch she showed her new friends how to play Little People and then they all watched a show together.  When it was nap time she asked if they could come sleep with her and that is where I drew the line...seriously!

When Reagan got up from her nap we headed over to Ben's grandparents for a 4th of July celebration.  It was lots of fun.  Reagan played with Benny in the pool and then we got to all go on a fire truck ride.  Reagan just LOVED it.  She waved and yelled "Happy 4th of July" as we drove around Menomonee Falls.  We had a great time!

Haircut and making jam with Auntie Jeannie 7.1.08...entry from mom

Reagan got her hair trimmed with Kelly this morning and was her usually cheese ball self!  After Kelly's we head over to Auntie Jeannie's for lunch and to help make her famous jam.  Reagan had so much fun and did a very nice job of helping Auntie Jeannie every step of the way.  Once Reagan had the jam making ways under her belt we headed over to visit Grandma Roemer.  I think Grandma was happy to see us all, especially Reagan and Emma.  Sara and I were laughing at Reagan as she was cruising all around and singing...such the show off! 

Visit with Dr. Schroth 6.27.08...entry from mom

Today we braved the traffic on our way to Madison to see Dr. Schroth for Reagan's 3-month appointment.  She did amazingly well...I don't want to jinx things, but she is so very well and healthy right now it's awesome.  We decided to start Reagan on the VPA beginning Monday after Anne does a baseline evaluation.  Let's all keep our fingers crossed that this will work for Reagan and help to to gain some strength in her trunk.

A flower girl 6.25.08...entry from mom

This morning we went to David's Bridal to get Reagan's dress for Uncle Mike and soon to be Auntie April's wedding in September.  Reagan is going to be the flower girl, it makes me laugh just typing it.  Anyway she tried on the dress and really enjoyed checking herself out in the mirror, and was beside herself when she saw multiple reflections of herself in her princess dress smiling back at her.  The ladies at David's were just laughing and eating up every bit of my little ham.  The best was when she told us she looked gorgeous...I am not kidding.  She then went on to tell the ladies how it works being a flower girl and showed them how she will "throw flowers so Auntie April can come follow her."  We are all in for a treat watching this flower girl.  April, are you sure about this? 

Later in the afternoon Coop and Peanut (former students/players/babysitters) came by to visit and bring Reagan a birthday present that they brought back from Disney World just for her.  It is a big Dumbo holding onto a feather.  Super cute!  Reagan had fun telling them stories and made them S'mores and then we went outside to play hide and seek and have races.  When it was time for the girls to head out Reagan said, okay let's go and tried to cross the street with them.  3 going on 21?  I was able to win her over with the promise of going to play Wii!  Who said video games were a bad thing?!

Pretty in Pink 6.19.08...entry from mom

We are very appreciative of Lois and Greg Lucas for the stander they gave to Reagan this week.  Reagan has out grown the first stander she used.  It's hard to think when we first got that one we had to use the hip belt as a chest harness because she was so small...two years later her head is hanging off the top of it!  Greg is another one of Anne's friends she does therapy with and he has since outgrown his stander and they so kindly gave it to us for Reagan.  She calls it her rainbow stander, because the pads are rainbow stripe colored.  It works great for Reagan and gives her knees more support.  Reagan also got a new pair of knee immobilizers that were casted specifically for her legs and hope to be more effective.

On Tuesday we played beauty salon and Reagan got her very first manicure.  She picked out a very bright pink and I painted her nails.  She just loved it.  She is such a girly girl showing off her nails all day to anyone that would look.  I caught her a few times while she was playing watching her nails...too funny.  We also took a trip to the zoo with Grandmie and Grandpee Larson and got to see the sting rays and go for a train ride. 

This morning Reagan had music class with Miss Sarah.  I enrolled her with the older group and she did great, wheeling around and singing and marching all by herself!  After music she had OT with Donna and got her new wrist/hand splints.  She will wear them on both hands to help keep her thumb and other fingers from subluxing and keep her wrist in a neutral position.  I let her pick out what color she wanted and at first she said purple, but when that wasn't an option she chose hot pink...and wow are they hot!  I was trying to persuade her to pick a white or nude color, but that's not her style I guess.  By chance she happened to have on bright pink sandals, shorts and striped shirt along with her newly painted nails.  Add the hot pink braces and what a sight she was!!!!!!!!!!!!!!

Champion swimmer 6.15.08...entry from mom

The weather has been beautiful this week...no rain so far!  The adjuster came on Monday and unfortunately our basement is not going to be covered.  So after we got the news I began sadly pulling up the floor that we just installed a year ago and threw it in the garbage.  We are still running the dehumidifier and fans to get the floor bone dry before we do anything else.  It looks as though we are going to have to re grade the back yard to make sure if the ridiculous amounts of rain we received ever happens again it won't seep in through the floor.  We've lived here for going on 7 years and just finished off the basement because we never had water and didn't think anything of it...oh well, I shouldn't complain since Reagan is doing absolutely fantastic! 

She is eating almost 3 entire meals a day, snacking and only getting one can tube fed at night.  She is just amazing!  Last Friday at swim therapy she seriously swam the entire length of the pool all by herself.  She wore a vest that has neck/head support and Sue put a noodle under her bottom and let Reagan at it.  She is too cute, she swims like a froggy (check out the pics in the photo album), but she did a length there and back all be herself with Leah, Kate, Sue and I all cheering her on.  Her smile was huge when she touched that wall!  I wanted to cry I was so proud of her.  With all that hard work she took at long nap that afternoon!  Uncle Josh came and watched Reagan on Sunday so Joe and I could go to the Brewers game with Brett and Amy.  We got to sit nine rows behind home plate, it was awesome...thanks BD and Amy!

6.10.08...entry from mom

We have had a lot of things going on lately.  We are going to try out VPA, one of the drugs that is showing some promise in kids with SMA.  It is not a cure, but we are hoping it will help Reagan possibly gain some strength or at least help Reagan to maintain what strength she has.  As with many drugs there are side effects, so Reagan will have to have multiple blood draws to check certain levels to make sure she is doing well on it.  Last Friday Reagan had to have her first blood draw after swimming.  She did really well, barely cried at all.  Since she did so well I took her to the zoo for a bit before we had to go see Dr. Dan for her 3 year check up.  The check up went well...she weighed in at 25 lbs 8 oz and is 36 inches tall now!  She just talked Dr. Dan's ear off and gave him a hug when we were all done!  She did have to get a shot and really cried.  I guess it hurt so bad that she told me she couldn't drive her chair...she got the shot in her non-driving arm.  I just had to chuckle, since she did fine when they drew 5 vials of blood, but a tiny shot was torture.  She was fine once she got a sticker.  Friday night Reagan got to stay up late and hang out with Grady and Andy and Amie.  They were so cute.  Reagan was teaching him the ABC's and was trying to roll over by him.

Saturday we headed to the Appleton area for Emma's first birthday party.  Reagan was very excited to sing to her and have cake.  Emma certainly enjoyed eating her cake!  We got on the road and shortly there after the Joe called to let us know the weather was very severe and to be careful.  He called and updated us every so often.  It was a long ride home, but we made it safely.  Unfortunately once we got home and went downstairs to play Princess Wii we discovered water and more water and more water.  We subsequently spent the next 4 hours mopping, toweling, and vacuuming up water.  My mom and dad came over and helped us out.  Dad, Joe and I cleaned up water and Mom took care of Reagan.  Once we got things under control they took Reagan for the night since it was still coming down and we would be cleaning up late.  Joe and I got up in shifts to check on things and keep it as dry as possible.  The next morning we thought we were out of the woods and went to go and pick up Reagan just to have the sky open up one again and dumped tons of water on us...we quickly turned around to go home to find water in the basement once again...this continued throughout the night.  We are very lucky to still have a roof over our head and the water out of the basement.  Watching the news and seeing how awful some others have it is so sad.

Monday Reagan had her end of the year program at school for the parents.  It was really cute.  They sang us some songs and Miss Denise made a cool slide show, then we shared snacks and chatted.  Reagan really seems to be in her element and just loves her class.  Joe and I were excited to see all of her little classmates that she talks about all of the time.  It is so awesome to see her so confident and independent!

Surprise!  5.31.08...entry from mom

Reagan's week was another busy one with lots of running around to school, therapy, play dates, appointments, errands, meetings, and a surprise birthday party!

Reagan is definitely enjoying school and is becoming much more independent and challenging.  Before she had her power chair she really had no choice but to sit and listen...now, well she's wheeled away from me on more than one occasion to say the least.  She also is much more social with her peers, not that she wasn't before, but many times she sat back and watched the other kids and then watch them run away, now she is the ring leader at times!  I even got a "jeez mom, I'm coming" this week.  Reagan's friend Megan came over for a play date on Thursday and they dressed up like princesses and played ponies and made beaded bracelets, girly things.  Reagan was sad to see Megan have to leave and asked if she could come over again and play Wii next time.

Grandpa and Reagan put up the bird feeder that Reagan picked out earlier in the week.  We have had quite a number of birds in the back yard and Reagan's loves watching them and always tells us when she sees one.  Now we are talking about planting a butterfly garden.  I've never planted anything, so we'll see how this goes?!

Friday night we went to a surprise 30th birthday party for our friend Andy.  His wife Amie did a great job getting the entire party organized and not letting on at all!  In lieu of gifts for Andy, Amie asked that people make a donation to SMA in honor of Reagan.  Joe and I were so touched that she thought of Reagan like that...made me cry:)  We had a great time at the party and I think Andy was really surprised when they walked in!  Reagan had fun with her new gal pal Sarah, she even colored her a picture and had cake with her.  Reagan even got a wet willy from Grady when we were taking pictures!  Happy Birthday Old Man River!

Thanks to Aunt Jackie and Starbucks 5.21.08...entry from mom

A special thanks to Aunt Jackie and Starbucks for sponsoring our team for the MDA walk.  Aunt Jackie filled out all of the paper work for Starbucks to donate $10 for every person we had on our team....53 people, that totaled $530 dollars to MDA.  Thanks Aunt Jackie and Starbucks for your support!!!!!!!!!!!!!!!

Walk with the Animals 5.17.08...entry from mom

What a beautiful day for a walk and party with family and friends!  We were certainly glad the guest of honor was feeling well enough to make it.  We had such a huge team for the walk this year!  It is always so heart warming to see all of our family and friends that come and support Reagan with such huge smiles and big hearts...we love you all!  It was quite the momentous occasion as it was Reagan's first adventure out to the zoo in her power chair.  She did awesome driving around being careful and listening!  We didn't have a single problem...what a good little girl.  We had fun doing the walk and even got a glimpse of the new baby orangutan.  Once we made it back to the finish line we had some lunch and chatted with everyone.  Ben and Leah, two of Reagan's little buddies that also have SMA were there, and Reagan also met another older girl with SMA that loved Reagan's chair:)  Once we got some pictures we made our way home for the big birthday party with cake and ice cream.  Reagan had a special surprise when she got home...a purple elephant cake.  I think she really liked it, which totally made all of the work well worth it.  Of course everyone got her way to much present wise...even though I said no presents!  What another great walk birthday party.  Reagan is already excited for next year...and school tomorrow. 

On a side note Reagan was on the news at 6 and 10 for the MDA Walk on CBS 58 here in Milwaukee...she was such a little cutie pie wheeling by holding her daddy's hand!

Under the weather 5.16.08...entry from mom

Early this week I thought Reagan was developing allergies, by Wednesday afternoon she had a small fever and was coughing.  I started her cold time protocol just as a precaution because I thought it was just a nasal drip that was causing the cough.  Wednesday night Reagan didn't sleep very well because she was coughing so much and really congested.  By Thursday morning we started seeing the down hill slide.  Luckily Bethanne came over for therapy and worked on loosening up Reagan ribcage and helping her to work out some of the junk.  Reagan actually seemed to perk up after therapy and was doing well so I took her to music class.  With about 5 minutes to go she couldn't even sit up on her own, was having a hard time keeping her eyes open and was burning up.  I waited the 5 minutes for class to be over and quickly got her home and stripped her down.  She had a fever of 102.9 so I called Dr. Dan and he had her come in to take a look.  She fell asleep sitting in the chair watching Max & Ruby while we waited for her appointment...that was a first!  I picked her up put her in the car and by the time we pulled out of the driveway she was sleeping again.  We went in to the office and while we were waiting for Dr. Dan she had to be held and fell asleep once again.  She woke up when Dr. Dan came in let him check her out and while we were talking about what was wrong and what the plan was she fell asleep again.  When sticker time came she didn't even budge so Dr. Dan picked out some stickers to take home, he picked out My Little Pony and Uniqua from Backyardagains...not bad!  He said Reagan has a virus that is going around; it looks like the flu and then a cold and lasts a couple of days, but because of her SMA and respiratory issues he prescribed an antibiotic to head anything off at the pass.  We made a follow-up appointment for the next day just to make sure Reagan was headed in the right direction.  Grammie came over after the appointment so I could just get Reagan to bed and go pick up her medicine and Daddy got home soon there after.  Thankfully by Friday late morning Reagan's fever finally broke.  Her throat is very sore and her voice was almost gone.  I do have to say she sounds so cute with her little raspy voice.  Hopefully she'll be all better for the zoo walk and her birthday party!

Reagan's first day of school 5.12.08...entry from mom

Reagan had a great first day of school.  She happily wheeled on out to the bus and got secured in with no problems.  Joe worked from home today so we could send her off and welcome her home together.  After the bus drove away we just looked at each other in disbelief that our baby was growing up and was off to school.  What would I do for three hours?  We sat at the table each of us on our own laptop and worked until 11:30 and then ran outside and waited for her to arrive home.  The bus driver said she did great and had fun riding the bus.  She was all smiles and told us all about her day...listening to the drums and guitars...hiding under a parachute...painted a barn...ate a snack with Nicholas...cleaned up a mess...Mrs. Burnett was so nice...  She was just a little Energizer Bunny, she just kept going, and going.  I made some adjustments to her chair and then we went downstairs and played a bit of Wii bowling with daddy and Grandipe and Grammie.  Reagan got a spare on her first attempt and a strike on her second.  She was so excited.  Then we watched Grammie and daddy finish before I realized that I had 15 minutes to get to PT.  Now that Reagan is three we go to NBT for therapy.  Reagan did really well in PT and worked really hard.  She got home at 3:00 and just crashed.  She is very excited to go back to school tomorrow, it is so fun to see her excitement! 

Thanks to everyone for the calls and the emails asking about Reagan's first day and wishing Reagan a happy birthday!

Happy Birthday to Reagan 5.11.08...entry from mom

What a wonderful  Birthday/Mother's day we had today.  Reagan slept in until 8:30 and was immediately excited that it was her birthday.  Even though it was her 3rd birthday and the entire day was to revolve around her the first thing she said to me was "Happy Mother's Day"...do I have the sweetest girl or what?  Joe, Uncle Josh, Reagan and I got all ready for the day and had a breakfast birthday party with cake and presents.  All of her respiratory therapy is certainly paying off, Reagan was able to blow out all three of her candles, it was only one at a time, but she did it!  Then it was on to opening presents.  The first present she open was a Handy Manny book, she played with that for at least ten minutes before we could even get her to open another present.  Her next gift was a Littlest Pet Shop guy that she proceeded to played with for ten minutes before we could get her to put it down and open another gift.  Do you see where I am going with this?  It took at least an hour to get through opening presents.  After we were done with the birthday breakfast party we headed over to Grammie and Grandpie Larson's for another party!  Reagan was very excited because her cousin Steven was there to play with.  She blew out all of the candles on the ice cream cake Grammie and Grandipe got her and open another truck load of presents.  By the time we got back home it was well past Reagan's usual nap time.  Even though the entire ride home she told us she wasn't tired and didn't need a nap because she just wanted to play with her new toys and dress up as a princess, she went down and slept like a rock for 2 hours before we went in and woke her up.  Uncle Josh and Dada played Legos with her and built a bunch of different animals, and even after she tired of playing Legos they kept at it.  Reagan helped me get her backpack packed with all of her new school supplies and lay out her clothes for the morning in preparation for her first day of school.  What a momentous two days she will have, her third birthday and her first day of school.  Our little girl is growing up!

birthday party, school, and sun 5.6.08...entry from mom

Reagan went to her first non-family birthday party this past Sunday.  Her friend from music class, Megan turned three and invited Reagan to celebrate.  Reagan had a great time.  She decorated a picture frame, then Miss Sara came and entertained the troops with music, then we had lunch and cake and played and Megan opened her presents and then played more and played some more after that.  Needless to say, by 2:00 Reagan was pretty tired, and I wasn't too far behind.  It was a great day!  I tried my best to make sure Reagan was able to play and do what the other kids were doing.  It was great to see her smile and have fun playing.  She constantly wanted to go where all of the other kids were going, so I was running around carrying her to play tag and play house and swing and golf, attempt soccer, do some sidewalk chalk drawing, and even gave the hula hoop a go.

Monday was another big day.  Joe, Reagan and I went to meet with Reagan's new teacher, aides, therapist and other support staff at her new school for a care plan meeting.  Since we do not have a van yet the school bus came and picked up Reagan and brought her to school.  Joe and I were a bit nervous as to how Reagan would do riding the bus by herself, but she did great...she really had fun!  We got to school and Catherine and the district nurse, Pam, just happened to be walking in as Reagan was getting down.  She was all excited and drove right on in to her new school down the hall to Mrs. Burnett's classroom.  The meeting was to teach the staff how to operate Reagan's chair and some how to's with venting and things of that nature.  Reagan did a great job showing off all of the things her chair can do then I taught everyone how to vent Reagan and manually cough her, replace her mini button incase it comes out and so on.  Reagan was really good through all of the talking and got her picture taken and played with the aides.  Next Monday will be her official first day of school...yeah, she is so excited!  We are excited as well, a bit nervous to let go, and sad that she is growing up so fast, but we hope she will thrive in this new environment:)  Reagan also had a GI appointment in the afternoon.  She is over 25 lbs finally!  We are going to try a prescription to help stimulate her appetite.

Reagan is very excited for her birthday and more over her birthday party.  We are going to have a small celebration on Sunday, her actual birthday and a big one on the 17th after the MDA walk!  I am attempting to make a purple elephant birthday cake...keep your fingers crossed it turns out!!!!!!!!!!!!

Lots of stuff going on 4.29.08...entry from mom

Last Monday Andrew from Mobility Works brought over yet another mini van for us to take a look at.  It's a week later and we are still trying to figure out what is going to work best for Reagan and our budget.  Last Wednesday we had Reagan's IEP (Individualized Education Program) meeting with the New Berlin School District Early Childhood Program evaluators which included 8 people plus Joe, Reagan and myself.  It took about 2 hours from start to finish.  Reagan's PT Anne was one of the people there which was a tremendous help and great support.  The meeting went very well and all of the NBPS team members were great to work with.  We could really tell that they are going to work really hard to meet all of her needs.  Joe and I will be going to Reagan's new school, Glen Park Elementary, next week to show her teachers and aides how to work her power chair, her g-tube (in case she needs to be vented), and how to manually cough her in case of an emergency.  Then the following Monday will be Reagan's first day of school!  The little bus is going to come and pick her up and everything.  I can't believe our little girl is going to school, it's exciting and sad at the same time.  On Thursday Donna, our OT, started Reagan on a pressure brushing program to help with sensory issues that Reagan's is experiencing.  I use a nylon surgical brush and do long firm strokes  to her arms, palms, legs, feel, and back followed by giving compression to all of the joints of the extremity.  Reagan seems to be responding very well to this treatment and actually asks for her 'brushing' every morning, nap, and bedtime.  This past weekend Reagan's grandma and grandpa Imhoff came and visited and played which was a lot of fun.  Sunday Reagan is going to her friend from music class Megan's birthday party, she is very excited.  Next week Reagan has her check-up with G.I. and gets fitted for a new set of knee immobilizers.  We also have to get going on picking out and ordering her flower girl dress for Uncle Mike and Auntie April's wedding.  Hopefully we will have a van picked out and ordered soon, as we are also getting ready for Reagan big 3rd birthday, the zoo walk, and the golf outing,...she sure keeps us moving!

Ramps and Mini Vans 4.16.08...entry for mom

Last Friday I made a trip to West Bend to pick up a ramp so Reagan can get her purple chair in and out of the house.  On Monday Joe and I did some handy work and got it up and running.  Reagan was hesitant at first go on her way out, but she made it out and was pretty excited about it.  Today we enjoyed the beautiful weather and played outside while looking at new mini-vans for Reagan.  The guys from Mobility Works drove some different options over to our house so we could see how Reagan's chair would fit in the different models...that was awfully nice of them!  Reagan checked out the first van with us, then Andrew took that one back to the showroom to bring back two more.  While we waited we played and found out that for whatever reason Reagan is afraid of... wait for it...leaves?  It was pretty windy and leaves were blowing around here and there, one landed on her arm and she started crying and just freaking out?  Joe came to the rescue and tossed it away and saved the day.  We did look at two other options after that.  Now our heads are spinning as we try and figure out what is going to suit Reagan's and our needs best?  They are bringing another option over on Friday to make things even more interesting!

Great visit 4.6.08...entry from mom

Our weekend started off with a great Friday!  Reagan had another wonderful time in the pool with Sue and we also go to see Leah and visit with her and her mom.  Then off we went to Madison to see Dr. Schroth.  I think it was the best check-up report ever.  Reagan was all chatty and silly and healthy!!!!!  On Saturday I scrapbooked with Nicole all day and Joe had to work so Reagan got to go by Grammie and Grandpie Larson's for the day and play.  Today we enjoyed the beautiful weather and took our first trip of the season to the zoo.  The elephants were fun to watch while they played and Reagan was fun to watch while she checked out her 'Cheetah Sweetie Pies'.  All in all it was a great weekend.

4.3.08...entry from mom

Yesterday Reagan had her appointment with Dr. Tassone the orthopedic doctor.  She has developed a 16° curve.  Right now the plan is to check back in a few months, have another set of x-rays done and go from there.  Reagan did well in Specch and OT today and had a fun time at music and lots of fun at crafty class with daddy.  Tomorrow...swimming in the morning and then off to Madison to see Dr. Schroth in the afternoon.  Monday Joe is heading to Miami for a few days for his next workshop.

Reagan's first Brewers game 3.31.08...entry from mom

On Friday Reagan had her first swim therapy at the new place with a new therapist, Sue.  She had a great time.  Sue didn't have anyone after Reagan so they went as long as Reagan could tolerate...over an hour.  She is such a water bug.  I had a great time watching her swim all by her self with the aid of some different floatie devices.  There was one that went around her neck so her head wouldn't flop into the water, and that made quite a difference.

Saturday Reagan attended her very first Brewers game.  Grandpie and Grammie Larson treated us to lunch at Friday's Front Row for the first few innings and then went and enjoyed the game from our seats.  On our way to our seats we saw Bernie Brewer, but Reagan really wasn't all to sure about him so we just continued on.  I think she enjoyed the game, but really wanted to know when it was going to be her turn to play!  Of course part of the whole experience was the Sausage Race.  I'm not really sure what she thought of it, but all in all it was a really fun day!  We are still trying to get rid of her cough, but other than that Reagan is doing very well.  Last night we had a really loud thunderstorm that shook the house and scared Reagan.  Needless to say this morning I woke up to a full bed, me, Joe, Reagan and Rajah.  I was amazed that the 2 smallest individuals took up the most room! 

Reagan has a pretty busy week.  Tomorrow in addition to PT and Speech she will also be evaluated by the New Berlin Public School therapists and nurse to see if she will qualify for services.  If she does qualify the next step will be an setting up an IEP, Individual Education Plan, for Reagan.  Wednesday she will meet with Dr. Tassone in the scoliosis clinic, Thursday will be our usual busy day and then Friday we are heading to Madison to see Dr. Schroth and get Reagan's TLSO adjusted.

An up and down week 3.27.08...entry from mom

Reagan is still fighting off something.  She is up and down with a fever and still is coughing.  Her lungs have a bit of junk, but it is staying up higher so that's good.  We have had some long nights getting up 4,5,6 times because her O2 keeps dropping so we have to wake her up to cough and suction and get her stats back up.  Last night was a good night for her and she was definitely a happier little princess today.  We went to music this morning and to crafty class with daddy tonight and really enjoyed herself.  Tomorrow she will have her first aquatic therapy session with Sue and then on Saturday we are hoping to taker her to her first ever Brewer game at Miller Park.  Next week Reagan will go and see Dr. Tassone for her back and then Dr. Schroth on Friday for her 3 month check in.

Happy Easter 3.24.08...entry from mom

We have had quite the busy week...we got Daddy ready for his annual trip to Las Vegas with Uncle Josh for the opening round of the basketball tourney, had are usual appointments and therapies, helped Grammie and Grandpie Larson move, dug ourselves out of another foot of snow, and celebrated Easter.  On Thursday since Joe was out of town I got to take Reagan to crafty class and the theme was "eggs" which was a lot of fun.  Reagan's new swim therapy time is Friday mornings with Sue, and our very first session was snowed out!  By the time all was said and done we got almost 16 inched of snow on Friday.  Saturday we helped with the move and helped clean up the new house.  Sunday morning was lots of fun.  Reagan was very excited to look for her Easter basket and hunt for eggs around the house.  It was so much fun to watch her motor around and find the eggs!  Unfortunately as the day wore on some congestion and a cough developed.  This morning she had a low fever and a lot more coughing.  I'm doing her cold time protocol and hopefully it really doesn't turn into anything major.

We hope you all had a wonderful Easter:)  Lots of hugs to everyone!!!!!!!!!!!!!!!!!!

Good Day 3.13.08...entry from mom

Reagan slept very well last night with the new settings on her Bi-pap she didn't desat at all.  She had a great day today and did very well in all of her therapies and was extra talkative at music class this morning.  We are hoping that Reagan will have another good night so we can make a trip to Oma's for lunch to celebrate her birthday!

3.12.08...entry from mom

Yesterday Reagan had lots of fun playing with Steven and Auntie Jackie.  We also managed to squeeze in her PT and Speech and crafty class.  The past couple nights Reagan's O2 levels have been a bit low at night and last night she alarmed about 6 times.  She really seems fine with the exception of being a bit weaker and some yuckies in her nose and an on/off low grade fever.  We talked with Dr. Schroth and she bumped up Reagan's BI-pap settings and started her on some antibiotics because she thinks Reagan is working hard to fight something off and doesn't want it to turn into anything more serious.  Hopefully tonight we can all get some more rest for our busy Thursday.  Thursday will be Reagan's last swim therapy with Catherine because she will be having a baby soon:)  Reagan will miss her lots, but fortunately she is the PT for the New Berlin Public Schools and will be working with Reagan once she starts school.

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