Journal 3

The Wizard of Oz 2.24.08...entry from mom

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

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

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

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

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

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

GI Appointment 2.18.08...entry from mom

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

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

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

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

Feeling better 2.12.08...entry from mom

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

Big Girl 1.26.08...entry from mom

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

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

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

Standing again! 1.16.08...entry from mom

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

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

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

Happy New Year 1.2.08...entry from Mom

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

OT and new AFO's 12.27.07

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

Christmas Celebrations 12.26.07...entry from Mom

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

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

New cast 12.20.07

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

Follow-up visit 12.13.07

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

O' Christmas Tree 12.7.07

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

Very own power chair! 12.5.07

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

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

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

Eventful weekend 12.3.07 (entry from mom)

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

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