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Visiting Oma and back at School

December 22, 2010

We had Reagan rest a lot this past weekend and really kept pushing fluids and nutrition, and by Monday she went to school.  She wasn't quite able to make it through the day, but was happy to try and see her friends and teachers.  Monday night she was in bed by 6:30...my tired little Love Bug.  Tuesday she was able to make it for her class party!  Tired and floppy, but happy none the less.  Wednesday we headed to Oma's to take her out for lunch and spend the afternoon with her.  As always is was so much fun hanging out with Oma, she is so awesome:)

The Nutcracker

December 17, 2010

We went and checked in with Dr. Dan and he said that as long as Reagan doesn't have a fever and is holding her sats that we can take her to The Nutcracker...she was at 99.1 just in time to get all fancied up and go with Uncle Josh, Nicole, Joe and myself.  We had a nice dinner at home and then made our way.  A few minutes after we sat in our seats we saw Reagan's friend Samantha and she happened to be in the seats right next to us.  That certainly cheered Reagan up!  She did pretty well, but after intermission she had to sit on my lap because she could sit up anymore.  It was a beautiful ballet!

Sick again?

December 16, 2010

Monday Reagan stayed home from school because she wasn't feeling well.  When I went to lay her down for her nap she started crying that her ear hurt "really alot."  Since she never really says boo about things I figured I better call Dr. Dan...sure enough she has an ear infection.  After a few doses of amoxicillin she was pretty chatty and happy come Tuesday night and her fever was gone, I figured she'd be all ready for school Wednesday morning...boy was I wrong!  That night was terrible, Reagan's O2 kept dropping into the low 80's her heart rate was in the 180s-190s, her stomach was not happy, she was throwing up out of her tube and mouth and spiked a fever of 104.2.  After talking with Dr. Dan he put Reagan on different antibiotic, she's still all over the place.  We are just hoping that she is all better for Christmas and can make it to The Nutcracker and her class Holiday party next week!

Santa Claus is Coming to Town

December 11, 2010

Reagan and her friend Abby rang the Salvation Army Bell this afternoon for Daisy scouts at our local grocery store.  They were so cute and smiley.  After she was done with that we took her to "Santa Claus is Coming to Town."  It was an afternoon with Santa, crafts, snacks and stories for families of special needs children put on by parents of a special needs child.  What a fantastic event.  Believe it or not, this was Reagan's first time ever visiting Santa and getting to "sit" on his lap and tell him all of the things she wants for Christmas...it was so precious.  Then she wrote her list out and gave it to Mrs. Claus and made a picture frame and ornament and got her face painted.  Reagan was pretty wiped out (she has been a bit "off" since Thursday) so we went home and Reagan took about a three hour nap!

Reagan on the radio

December 9, 2010

Reagan was asked to be a part of the 25th annual Sale-A-Thon to benefit MDA promotion created by Gordie Boucher (National MDA Vice President) and the Boucher Automotive Group. The Boucher Group is a tremendous supporter of MDA and getting our kids to camp.  The promotion includes...

     ●Radio promotion spots being run on all Clear Channel radio stations in the Milwaukee market
     ●Newspaper ad that is running each Thursday in the Milwaukee Journal Sentinel
     ●MDA Holiday Card with artwork created by Reagan that is sent to every individual that buys a vehicle during the month of December

Yesterday afternoon Reagan and I went to the Clear Channel Studio for Reagan to record the radio spot(if you click on the "Radio promotion" line above you can her the final ad).  She really did do a great job and got it the first time around.  Then we got a tour of the studios and Reagan was spoiled with gifs from Michael and Clear Channel and Rachel and The Boucher Group.  After Joe was done mixing and editing we got to hear Reagan's part and he even let Reagan hit a button on the board to run it....she loved it!

Turkey, pizza and a Christmas Tree

November 26, 2010

Reagan was finally able to go back to school this week, just in time for her class Thanksgiving program.  Reagan was so cute in her little pilgrim girl hat and collar.  The songs and all of the kids were adorable and then they got to share popcorn and juice afterwards.  We went over to Grammie and Grandpie Larson's for Thanksgiving day with the whole family.  Grammie's meal was awesome as usual, but our little Reagan, although talking a big game all week that she was going to eat turkey and mashed potatoes, fell short at the buzzer and opted for pizza...yes frozen pizza!  I tell you, this child?!

On Friday Joe, Reagan and I went and got our Christmas tree.  It was quite cold and thankfully it didn't take to long to find the tree Joe has always wanted, kind of Griswald-esk.  Let's just say we had to cut almost a foot off the top so the star would fit!  We strung the lights, but didn't have enough of our monster tree so the decorating will have to wait until I can find some more lights and all three of us can decorate together.  Our day ended with Josh and Nicole taking me out for a fantastic birthday dinner at a sushi restaurant I love...thanks!

Cough cough

November 15, 2010

Reagan has been a bit off since early last week and by Thursday night it came to a head with the coughing, bloody nose, fever and not so great stats.  The past couple of nights have been pretty rough and long.  The trouble is her nose is so stuffed that her BI-pap appears to not be helping and even causing more pressure/discomfort, but her O2 is just hover above 90 whether it's on of off.  During the middle of the day she seems fine minus the hacking cough, but come any rest time or treatment and it's a different story.  At least she's chatty and happy, so it can't be to awful.  We called Dr. Schroth's office to check in and got a script for some antibiotics so hopefully that will do the trick!

Mommy's got a new pair of shoes

November 8, 2010 

Joe got me a Nike gift card so I could get a much needed new pair of running shoes.    After checking out nike.com I found the NikeID shoes and played around.  NikeID shoes come in a variety of types and styles but it allows for you to design and customize your very own pair.  Reagan came over to check out what I was doing  and the next thing I knew the little fashionista jumped right in and, well, this is what the end product is...

Note the purple, pink and fuchsia, as well as the silver "sparkle" butterfly and "Cure SMA" heel ID.  Does that not scream Reagan?!

BOO!

October 31, 2010

Crazy, is about the best word to describe the past couple of weeks and this week definitely pushed the crazy envelope.  Joe and I decided to let Reagan have a Halloween party since Trick or Treating doesn't really work out so well for her, so that added a whole layer of stress on the week!  Tuesday was Reagan's class party, they got dressed up and had a parade in the Kindergarten pod then along with the parents played games and iced and decorated cookies.  I volunteered a few weeks earlier to make all of the cookies, pumpkin and ghosts, before I realized how busy this week was going to be for us, but it was fun nonetheless.  Wednesday Reagan came with me to noon practice and then we went over to Grammie and Grandpie's for dinner to celebrate Steven's 5th birthday.  Thursday Auntie April, Uncle Mike and Gianna flew in for a long weekend.  Reagan was so excited and happy to see her little cousin, they played and had fun until we made them go to bed!  Mike went with Joe to bowling and they must have had fun since they didn't make it home until 2:00am.  Friday Pat, Helga, and Oma came for a visit so we could all have "Thanksgiving" together while Mike and April were here, it was more of a Mexican fiesta than your traditional turkey dinner.  The girls had fun playing with Oma and Helga and the fun new toys they got.  Later that night we got the girls dressed up in their costumes and went to Haunter Gym at NBT.  They had a magician and Wild Jungle theme this year...fun!  Saturday was the big party.  We had 13 classmates and four cousins at the party where we decorated frames that we filled with a group picture, sang with Miss Sarah, had snacks, "bobbed" for doughnuts, had mummy races and guessing games.  The two hours went by quickly, but I think all of us adults were tired after it!  I think the kids had fun and Reagan certainly talked about it the rest of the day!

Field Trip, Cortisone Injections and a Birthday Party

October 22, 2010

Reagan had her very first official school field trip this past Wednesday.  I was a chaperone and tagged along to Swan's Pumpkin Farm with the Kindergartener of Ronald Reagan Elementary School.  It was a great fun and they really go all out at Swan's and make it a fun experience for the kids.  We learned about pumpkins and gourds and feed the animals, went on a hay ride, watched a puppet show, danced and sang and picked pumpkins.  After lunch Reagan and I had to take off for Madison so Reagan could get admitted early to start TPN the night before the cortisone steroid injections for her hips. 

When we got to Madison Jennifer, one of Reagan's favorite nurse's was there waiting for us.  We got all settled and cleaned up from the pumpkin farm and they let Reagan relax for awhile before they started her line.  She did great and they got the IV in one attempt!  Then we were off to bed.  The next morning Reagan went down about 10:30 and things went pretty well minus a bit of a scare on the way back to recovery and then the monster that possessed my sweet child afterwards.  Without getting into a lot of specifics from the day let's just say both Reagan and I REALLY needed to go home.  Good thing her stomach knew that and was up and running right away.  Even though Dr. Schroth wanted us to stay another night she thankfully let me take her home that night, a bit reluctantly, but none the less I think she understood why after the day we had...thanks for understanding Dr. Schroth!

Come Sunday Reagan was more than happy to go to Alexandra's 6th Birthday Party.  It was a Tea Party theme, so of course we had to wear a fancy dress.  They made big beautiful hats and had mini tea cakes and tea, it was so sweet, Bethanne really did a fantastic job!

Our busy little bee

She loves school and can't wait to go everyday and she is still busy with PT and OT and Speech as well as beginning Daisy scouts and playing soccer on Saturday mornings.  At the end of the day her body is fatigued, but her mind is always ready to go and happy as can be, she definitely isn't going to let a little old thing like SMA slow her down...she is truly amazing! 

Daddy's Hall of Fame Induction

October 3, 2010

This weekend we picked up Oma and headed to Marshfield for Joe's Marshfield High School Athletic Hall of Fame induction.  Friday we went to MHS football game where Joe and his fellow inductees were introduced and Reagan got to meet the Tiger mascot.  We were all bundled up as it was pretty cold and windy that night.  We made our way out at half time since Reagan and I were freezing cold.  The walk way was about 6 inches wider than Reagan's chair and we had to make our way down to the opposite end of the stadium to get out.  Good thing Reagan is a rock star driver and the student section was wonderfully kind in letting us through.  We finished off the night with a fish fry at River's Edge, the golf course Grandpa Pat and Grandma Helga go to.

Saturday morning we took Reagan swimming before we headed over to Grandma & Grandpa Imhoff's for lunch and play time.  The pool was extremely cold so we played in the hot tub with the jets off for a bit.  Reagan got spoiled by Grandma Helga and Oma and played the afternoon away.  Once we were all ready we headed to Joe's induction for dinner and the presentations.  Joe made a wonderful speech and Reagan was clapping and yelling for daddy, then asked me when it was going to be her turn to talk on the microphone...such a diva!

Neuro-Muscle Clinic Day in Madison

September 29, 2010

Reagan had her annual day long, hit all specialties and all tests in one day clinic appointment in Madison today.  Joe was able to take off work and come along too, which was awesome since I have a head cold and my eyes feel like they are going to pop out of my head!  We updated with the new routine of school and changes, all the good stuff.  Reagan did well until blood draw time at the end of the visit, then the water works started until she saw Noni and then she was fine:)  We also tried out The Vest and Reagan loved it.  The Vest is an airway clearance therapy system to help us get the junk out and keep Reagan healthy.  We have used palm cups and a hand held percussor, but with her being so small and skinny with the rods in her back it is becoming painful for her to have those treatments done, which are essential.  If we get approved The Vest would be a great alternative.  We also discussed Reagan's continued hip/butt/leg pain (this has been getting worse over the past year) and have decided to try cortisone injections into her hip joints to see if that may bring some relief.  Reagan did lose 2.5 pounds since July, so we are formulating a new plan for tube feeds at school to help supplement more calories in Reagan's day.  All in all not a bad visit, nice to have Daddy there:)

It's no fun being sick...again

September 25, 2010

So, our little Peanut is sick once again.  She had a little bit of an upper respiratory infection right after Labor day and missed a few days of school, but Dr. Schroth got her on an antibiotic right away and Reagan was back to herself happy, coughing free self in a week.  Then just this past Thursday I got a call from Reagan's teacher that she had a fever and was being really quiet, not her usual chatty self.  The quiet part was almost more worrisome than the fever.  I went and picked her up right away and she looked pretty pale and very tired.  It was a long night of treatments and coughing jags.  Friday was a bit better, naps, lots of fluids and resting.  Her fever finally broke last night I'm hoping, but I also thought that yesterday morning and it seems to creep up late day.

Reagan was upset that she wasn't able to go to school yesterday or soccer this morning and really sad that she missed Addison's birthday party this afternoon.  She was having a professional story teller come and the kids could dress up as their favorite story characters.  Reagan had her Pinkalicious costume all figured out:(  We'll just have to celebrate with Addy when she's all better.  I know there is so much going around and lots of Reagan's little buddies with SMA that are not feeling well and some even in the hospital...wishing everyone a healthy fall.

We did get some happy, exciting news this week.  Auntie April, Uncle MIke and Gianna are coming for a visit at the end of October! 

Tonight Joe and I are taking Uncle Josh out for his 31st birthday...Happy Birthday Josh!

MDA Telethon

September 6, 2010

What a fun filled weekend.  We all had a fun time at Telethon.  Reagan did very well and really enjoyed herself.  I know it may be hard for you to believe, but she was quite a ham at times and liked watching herself on tv while we were on camera.  We got to see so many familiar friendly faces and meet new families.  We are very tired, but so very thankful to everyone from our MDA and CBS 58 that helped put on the telethon and for all of the kind and generous people who made donations this weekend.  I will see if I can get any video up and running soon for you to see, but here are some pictures to look at in the mean time.

MDA Telethon Sunday Night

September 5, 2010

Reagan made her debut on the MDA Telethon tonight.  She was very silly, but so pretty.   I will see if I can get her segment up on the website for you all to see.

First day of Kindergarten

September 1, 2010

Today was a very big day in the Imhoff household...Reagan officially started Kindergarten and will now be in school for a full day.  No tears were shed, but mommy's tummy was in knots all day long, I couldn't even eat a thing all day long.  I was asked to come and help out when they did her meds and transfer to the potty chair, lunch, and recess.  Things went pretty well, but I was still a bit nervous for some reason even unknown to myself!  We picked her up at 3:30 and she was all smiles telling us all about her day and excited for the next.  Grammie and Grandpee came by after school to drop off a first day of school present (I don't ever remember them getting me something for the first day of school:)).  It was an early night as I think it will be all week long. 

Reagan's first library card and iPad

August 23, 2010

Today was a big day...Reagan got her very first library card and we picked up her iPad for school.  Uncle Josh came on over and helped us get all set up with the iPad and select apps for it.  She really enjoys drawing and playing music on it.  For the most part we have a pretty relaxing week ahead of us, a trip to the zoo with friends and Reagan's healthcare meeting at school with all of the new teachers/aides/ principals and Open House as well.

Getting some support for the SMA Treatment Acceleration Act

August 20, 2010

Thanks to MDA, this past Friday Reagan and I had the opportunity to meet with Senator Kohl's (Rebecca) and Senator Feingold's (Hope) legislative staff to discuss and ask for their support of the SMA Treatment Acceleration Act.  Both offices were very receptive and we had a great dialogue.  If you could now please take a moment and send an email to both senators about your personal story with SMA and ask for their support of the SMA TAA that would be great!  Here is the link to send that email http://www.senate.gov/general/contact_information/senators_cfm.cfm?State=WI.  Also, send the link to your family and friends asking them to do the same.  It doesn’t have to be long, and if you can include a picture that would be great!  We just need them to know how many of us they represent are affected by SMA and want them to support this legislation.

 They have yet to sign and support this bill.  Until this past Friday neither office had even heard of SMA nor was aware of the importance of this bill for our children and families.  Let’s strike while the iron is hot!

Princess Luncheon, School Pics, Doc Appointments

August 19, 2010

We are certainly keeping busy until school starts, trying to pack in lots of fun.  Monday Reagan and Alexandra had a princess tea luncheon.  I decorated the dining room and playroom all princessey.  The girls enjoyed tea (lemonade) and royal sandwiches, then made and decorated crown, castle and glass slipper shaped cookies.  They finished up their royal party decorating frames and taking pictures to put in them.

Tuesday  was Reagan's Kindergarten screening and school pictures in the morning and dinner with Uncle Josh and Nicole, we had a make your own pizza night!  Wednesday was the dentist and PT, Thursday was Speech, Dr. Dan (5 yr immunizations included), an MDA Lock-up and then OT.  Busy week and it's not even Friday!

SMA Education Day

August 14, 2010

Reagan and I had a great weekend in Madison.  Friday we started the day in the pool with Sue and after lunch made our way out to visit four different engines doing Fill the Boot to say hi and bring them some water.  At least today was cloudy with a slight breeze.  After our visits Reagan and I headed to Madison and had dinner with a bunch of SMA families at Denny's.  We seriously took over half the place with all of us the wheelchairs and Easy Max strollers.  The service was great and super nice just letting us hang out and chat.  Dr. Schroth even came by and ate with us.  Reagan ate dinner and played with Avery and Treyton...too funny.  I had promised Reagan that when we got back to the hotel I'd take her swimming, so at 9:00 we went swimming.

Saturday we were at SMA Education Day bright and early.  It was great, they had childcare while I sat in the seminar so Reagan got to play with Treyton and Avery some more and she also got to see Jerika and Parker. 

Fill the Boot for MDA

August 9, 2010

We had a very busy, but fun morning.  We started off the day at the Milwaukee IFA Union Hall for the Fill the Boot kick off press conference.  Reagan was front and center with the Chief, Kevin, Dave and Michelle smiling away.  Here is one of the news segments from the press conference http://www.cbs58.com/index.php?aid=13548.  Reagan also had lots of fun sneaking up on Brian, he's the camera guy for CBS 58 that we've gotten to know over the past few years, and yelling "boo" or having him chase her.  After the press conference we went to a park with Brian and Shari Dunn who interview Reagan and I for a profile piece they will air during the MDA Labor Day Telethon.  Reagan did so well we had a special picnic lunch, a nap , and the watched a new Tinkerbell movie!

SMA Awareness Month...yes, it's August already

August 4, 2010

I can't believe it's August already.  Just a few more weeks of summer and my lovebug will be in Kindergarten.  Last week I took Reagan school supply shopping and she was very excited to pick out her folders and all that fun stuff.  Joe asked me how I felt about Reagan going to school all day long?  I'm so torn...I am excited for her and all of the fun she will have and friends she will make, I'm nervous about her eating lunch at school and letting someone else care for her, and I don't know what to do with myself while she's at school all day long?  I went from teaching full-time and coaching two sports to staying at home running all around and caring for Reagan, it seems weird to think I will have 6 hours a day that's not  filled?!

Well, until that time even comes we have plenty of things on the calendar.  Yesterday Reagan and I went around with Michelle from MDA to say hi to the Milwaukee Firefighters and wish them luck with their Fill-the Boot starting next Thursday.  Monday is the Fill-the-boot press conference and then Reagan and I will do her Profile Interview.  Wednesday is Zoo Class with Alexandra, and Thursday we are heading to Madison to check in with Dr. Schroth.  Reagan still has her weekly therapies and Saturday piano lessons in addition to everything else!

Team Up! camp

July 30, 2010

This week Reagan got to attend Team Up! camp at Raspberry Hill Farm in Sullivan.  It is a camp for differently-abled kids and their siblings.  The theme was Ancient Egypt, and Reagan was in the purple group (thanks Lois).  There were speakers and musicians, they did crafts, danced, sang, and even went horseback riding.  Reagan has been wanting to go horseback riding for a long time and was so excited to finally get the chance to.  They wouldn't let me or Reagan's therapist get up on the horse with her, it had to be there person, who was very nice, but just not familiar with someone like Reagan who is so weak and can't even sit up on her own anymore.  It was very difficult and I walk along side and held/supported Reagan for the entire ride, but at least she got to try it.  The smile on her face was when she got down was well worth it!

What a great vacation

July 24, 2010

We had a wonderful time with Mike, April and Gianna, what a great vacation.  It was nice and lazy and relaxing, just what we needed.  We relaxed outside, went swimming, I tried wind sailing, Reagan got to drive the boat, play ping pong and pool and Auntie April even hosted a Princess Tea Party for us girls.  We were sad to leave, Reagan was even crying and wanted to stay another day.  We did make a stop in Hershey, PA on our way home to break up the trip.  We all made our very own chocolate bars went on a tour and then made our way over to the Hershey Hotel and gardens.  It was beautiful and Reagan really enjoyed the butterfly garden.  We made it home late Friday night and had the weekend to unpack, do laundry and get Reagan all ready for Team Up! camp this week. 

Happy Birthday Daddy

July 17, 2010

Happy 35th birthday to the best Daddy and Hubby in the world.  We love you very much Joe! xoxo, your girls

Meeting with a new renal doctor and our Superstar's photo shoot

July 16, 2010

Yesterday we meet with a new renal doctor for a second opinion regarding all of Reagan's kidney stones and other renal issues.  She went through all of Reagan's records and tests over the past year and explained to us that while Reagan's case appears to be perplexing and complex she will work with us to hopefully prevent Reagan from passing anymore kidney stones and get the calcuria and proteria under control.  She switched Reagan's medications, is having us keep a voiding diary and also banished lemonade for the time being.  Of all things the lemonade banishment was the most distressing to Reagan.  She started all out crying right in front of the doctor, who hadn't realized that Reagan's oral intake is so small that taking away lemonade would be such a big deal to her.

Later that afternoon Reagan had a photo shoot for a new national campaign that MDA is doing, the Muscle Walk, and they asked if Reagan would be on all of the promotional materials for it.  A group from MDA, Kelly Lasky (a fantastic photographer) and Brian from CBS 58 to get footage of the shoot for a profile piece they are doing on Reagan for the MDA Labor Day Telethon.  Both Joe and I were also part of the shoot and boy was it HOT outside.  Reagan had fun and really hammed it up for the camera. 

Tomorrow we are leaving for our vacation out east to see Mike, April and Gianna.  We are getting up at 3:00am so we can be on the road by 4:00 and get through Chicago before traffic!

A successful surgery

July 7, 2010 

Reagan just got out of surgery and did great!  Now we have to get her tummy up and running and we should be home by the end of the week!

Time for another rod lengthening

July 6, 2010

We are headed to Madison to have Reagan's next rod lengthening done, as well as a VCUG (attempt two) and another DXA scan.  Reagan is a bit nervous, more so about having the IV placed than anything else.  She is excited to see Dr. Schroth and watch the new movies we got her. 

Summer fun and Fairy Princess Camp

July 4, 2010

What an exciting summer it has been so far.  I know it has been a long time since I have updated things, but I will be back at it on a regular basis.  We have all been well and busy this summer.  Joe spent a week in Prague and Dublin for work and Reagan has already had two zoo classes and best of all Fairy Princess Camp!  She LOVED it.  It was so wonderfully over the top with fairy princess delight and Reagan along with her two friends sent went with, Alexandra and Samantha just ate it up.  We had a wonderful 4th of July weekend with Carrie, Eric, Evan and Bella, as well as Steven and my mom and dad.  The only damper in our summer so far has been the unfortunate water in the basement issue which came to a head while Joe was in Prague and has resulted in us having to have some major excavation work done.  I guess it could always be worse?!

RSV Rears its Ugly Head 2.4.10...entry from mom

So sorry for the lack of updates, my hard drive crashed on me a few weeks ago and Reagan has been keeping me very busy.  She got a sinus infection mid January and did really well with it.  We went and saw Dr.Dan and he got here on antibiotics ASAP and she was good to go in no time...so we thought!  A few days after she had finished her antibiotics Reagan started with a cough, that turned into a junky cough that turned into a fever that turned into, well you see where I'm going with this.  So by Tuesday we were in Madison in the PICU, Reagan had RSV. She did really well and we were home by Saturday.  We have been still working on getting back to 100%, slowly, but surely we are getting there.  We are hoping by next week she will be able to go back to school in time for her class's Valentine's Day party.  We made her Valentine box and wrote out all the cards for her classmates to keep us busy so far this week.

Hopefully I'll have my computer back in another week or two and will be able to upload some pictures then.

Happy New Year and Back at School 1.6.10...entry from mom

We hope your holidays were wonderful and filled with lots of laughs and love.  Joe got home in time for a family New Year's Eve fondue, and being the huge party animals that we have become we were all in bed sleeping by 10:00!  We had a nice lazy New Year's day and Reagan enjoyed watching the Rose Parade and playing Wii with Daddy most of the day. 

Reagan was excited for her first day back to school in almost a month on Monday.  She had a great day and when I picked her up she didn't stop talking about her day for 15 straight minutes!  I could barely get a word in edgewise.  Now we are back in our routine with school, therapies, standing, stretching, and soon soccer, crafty and music classes will start up again.  We are lucky and thankful for Reagan to have been so healthy so far!

Happy 2010, I hope it brings you all the best!

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