Journal 4

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 destat 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.

Busy Little Girl 3.10.08...entry from mom

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

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