*Lily's December '03 Journal*

December 2003



December 19, 2003-My goodness what a LONG time since I have updated this journal! There has been so much going on in the last year I just really don't know whee to start! But I will try to update to the best of my ablility!

Our year has been great but the reason why it has been so long since updating our journal is the computer! My computer problems started a LONG time ago..over a year! It crashed then I couldn't load the program back up, then more crashes..and really what I needed was a new computer! So here I am on a new computer updating now!

Well lets see where to begin! We had a fun filled year and 2003 was a BLAST (to use an 80's term). Lily was very very healthy all year! In March of 2003 we were blessed with a visit from our good friends Liz and Kalair. They stayed for almost 2 weeks with us and during that time we made a trip to Columbus Ohio to a fundraiser called "Miracle for Madison" and friends". We had SUCH A great time there and got to meet other SMA families there! We were able to meet one of our hero's, Madison Reed! She is such a beautiful little girl! We also were able to meet many other families and of course we had a ball just being with Kalair.

After that the next big event was Lily's 2nd Birthday! What a milestone event that was, we had 2 huge parties and had alot of well wishers. On Saturday we had an "Open house" so that everyone could stop by and pay "homage" to the princess and share a piece of cake with us. It was a fun day and Lily certainly seemed like a princess! The next day we had a family birthday party, Lily was kinda exhausted from the day before so she was "partied out" and wanted her space in Pappy's bedroom. Still we all enjoyed spending time with each other..it was a special time in celebration of a little girl who had made it to her second birthday, a birthday that we didn't know if we would see with Lily.

The next big event was the FSMA conference in Washington D.C. Liz and Kalair once again drove here from Kansas and stayed a few days prior to us leaving for the conference. My mom went with us..we had great weather for traveling and it was beautiful! Who would have thought that WE would have been going all the way to Washington DC? My goodness!!!! Anyway, the first day was called "Walk to Congress" which we met with interns from our Representatives offices, and Senators offices...it was very neat. It was EXTREAMLY hot! My goodness! We lugged around Lily's stroller and it was so hot that we put her on Bipap so that she could have help breathing..but we trudged to each office (Ron Lewis', Mitch McConnell's, and Jim Bunning's) to ask for more funding for SMA research. It was awsome to be there..you could feel chills just looking around at all the places where OUR fates as American Citizen's are made. We were able to have lunch with the Intern at Ron Lewis' office which was REALLY cool! You could hear the bell ring signaling them for a vote! LOTS of neat history! We walked around the capitol to get back to the hotel (it felt like it was 150 degrees!!). Later that afternoon we met with someone at Jim Bunning's office as well then after that we walked over to Mitch McConnell's office and met with a very nice Intern named Sara Long. After that it was back to the hotel to relax and cool off before heading down to the "meet and greet" to meet other families dealing with SMA. The whole weekend was wonderful and we were able to meet so many other wonderful families and friends. Many of them were some of my best friends but we had never had the chance to meet but talked so much over the phone and emailing each other all the time. It was just wonderful! We had 3 days of meetings and talking with many other families and of course getting our kids together as much as possible so that they could "play" with someone who was JUST LIKE THEM! Lily LOVED it and the first day of the conference she woke up at 5am being excited! On Sunday the meetings were pretty much over with so a few of us went sight seeing around Washington. We rode the Metro Rail (very cool) which Lily LOVED then we walked down to see the White House, walked over to the Lincoln Memorial with stops at the Vietnam Wall Memorial and the Korean Memorial. After that we walked over to some of the Museums to see them. It was alot of fun and it was great to meet the families and we plan on making that a yearly event as much as possible.

Next on the list was a fundraiser that friends of ours in Northern Kentucky threw for Lily. It was called "Celebration for Lily" and it was truly very touching with everything that they did to ensure that it was a success. First we got there that afternoon and helped as much as possible to get things together. Lily was very good all day long and enjoyed all the attention and action going on around her. They had so many wonderful things donated, food, items for the auction, etc. Neon Blue, the band my dad or Lily's Pappy plays in, donated their time for the event. They were AWSOME and Lily LOVED being up on my shoulder dancing to the music until VERY late that night. I cannot SAY how much fun we had and how thankful for friends like that who take the time to raise money for Lily's fund (a charity here in Shelbyville has set aside a fund for Lily's medical needs). The money that was raised will go to buy her a computer for her to play on, do preschool on, and many other things. It was awsome and I can't say how thankful we are enough to all the people involved in it (Debbie and Richard Brock, Linda and Bob Brock, Charlie and Sheri Brown, Terri and Jeanie Dalhover, Neon Blue, Everyone who donated things for the auction, EVERYONE who came and had a great time, and of course the list can go on and on and on!). We love you guys SO much!

After we settled down from that adventure it was time for ANOTHER one! We made a trip to Vermont to visit the O'Neills (Colin and Casey SMA type 1, to see them go to www.our-sma-angels.com/oneill). It was a LONG LONG trip but we had a GREAT time spending time with Lily's betrothed (ha ha) and his older brother (and of course Sue, Gene, and all the nurses). It was a great week to spend time with a wonderful family who has been such a GREAT source of information and comfort for me through the last 2 years! Colin and Lily got their g-tubes done together in New Jersey when they were TINY and it was so much fun to see them together again as BIG kids! I hope you go over to the pictures (yes..I am getting them up) and see them! Anyway..we spent time just relaxing, laughing, and talking! We took a few trips out to see beautiful Vermont but mainly just stayed enjoying the company of good friends. Unfortunately I got sick on the Sunday before we left with a TERRIBLE cold and by the time we were getting ready to leave Lily had the stupid cold! We ended up leaving for home on Lily's second day of the cold BUT she is a trooper and did SO well! We drove straight though with NO stopping (total of 19 hours counting stops)..but Lily was amazing and we would stop to cough, change her mask FILLED with snot, and away we would go again. We made it home at 4 am..did our Neb treatments and HIT THE BED! Lily of course was a TERRIFIC traveler even sick! She is amazing!

After that we really haven't had HUGE adventures BUT of course just everyday with us is an adventure! You never know where we will turn up or where we are going!

We had a fun filled Halloween, Lily was a ballerina. On the Saturday before Halloween Lily and I went to the Zoo for the Largest Halloween Party and had a GREAT time. Donna and Zach, Lily's half brother, went as well and it was cute to see our 2 cute kids together having a good time. Lily of course HAD to fall asleep as soon as we got inside the Zoo and after a 10 minute nap I woke her up so she wouldn't miss anything and she was SO darn grouchy!!! She finally calmed down and enjoyed it after a while. She rode the Haunted Train (basically just the train that goes around the Zoo) and laughed at the Headless Horseman. She LOVED the train (which I KNEW she would because she is such a WILD child) and laughed and chattered the whole time. Check out the pic's from then! Then later on that week my brother and his girlfriend Dena wanted to take Doobie (actually Drew..Dena's nephew) to the Zoo so off we went again! We met Colby (SMA type 1, 18 months old at the time) and Amy Russ there as well and had a GREAT time. This time Lily was awake for the whole thing and loved getting the candy but of course her favorite part was being on the Haunted Carosel (we didn't do the train this time).

I actually forgot something! The week of Halloween we were invited to Bellermine University by Lily's PT (Physical Therapist) Beth to participate in her class 2 days that week. It was alot of fun and Lily did GREAT with all the students and we actually got to share about SMA and some of the things we do. Lily was REALLY flirting with one of the students :) She LOVES men!!!!

Ok...so am I forgetting anything? Hmmmmm

Oh YEAH...of course we had Thanksgiving...had a GREAT time with family and Lily once again did well. Right after that she did catch a cold (again the second of the season!!!) so it was a busy week of treatments and taking care of her. She handled everything great as usual BUT this was a tougher cold with a nasty cough. It is so pitiful to watch her cough! She barely has one now so she spent alot of time on her bipap because when she would start to cough it would just take so much out of her and she just needed the support that only the bipap can offer her. We did LOTS of coughing sessions and I was getting up at least 2 times at night to do Neb treatments..but of course as always Lily is amazing and proves how strong she really is! She passed it again with flying colors!

I guess that is really all of our update for now..it is almost Christmas and I am SO thankful to be getting ready to celebrate Lily's 3rd Christmas! She is really into the tree this year but I still am not sure how much she understands about it being 2 1/2 years. Of course I have been talking to her about it and what all is happening...but I am super excited! Her first Christmas was such a whirlwind with learning all the equiptment, her losing her swallow, AND she had a cold! Her second one was sorta weird with Brian having left and all that crap that was going on BUT THIS one I am SO ready to celebrate! We have MADE it and continue to survive everything that has gone on! It is amazing that we have made it this far and I KNOW that without GOD and my super great friends we would be in a "rut" still! We have had so much support through friends and a wonderful family...and we ARE STILL STANDING! How amazing is that? I am honored to have such a wonderful little girl who teaches me SO darn much about life here with me! I am really looking forward to 2004 as well knowing that it will be another GREAT year! I look back and can't believe how much we have gone through and how far we have come through it all. I have such a beautiful little princess and a wonderful Angel (Nathan) in my life...I am so thankful for everything!

Ok...I hope you all have enjoyed my "novel"...it is GREAT to be back online and able to once again share our life with you all. Thank you all for being pacient with me and this whole "computer" thing...make sure you come back! I look forward to keeping things "up to date" again and sharing our amazing life with you ALL!

Lily sends BIG hugs and kisses to everyone and make sure you sign our guestbook to let us know you were here and make sure you check out all the new pictures AND all the new updates that we have made to the website!

A HUGE thank you to Laura Stants (check out HER websites as well..she has many www.our-sma-angels.com/Devon www.our-sma-angels.com/Sidney www.our-sma-angels.com/Kaylee and www.smasupport.com) for helping me with all the additions to the website AND for just being there day and night to make it all look great!

Ok...like I said make sure you come back to check out our new journal entries and pictures..and anything else we decide to add!


December 20, 2003 Well...just another day! Nothing much has happened today, I guess I am just excited to be back and running on the website! There probably won't be much for anyone to read now since we are in for the winter..flu has been all over so we are playing it safe and not going anywhere...GRRRR! Lily is handling it well but after a spring and summer of being out and about this is probably tough for her. I pretty much know what to expect now, this is our 3rd year of dealing with this BUT we were able to get out more last year. It has snowed more then I remember this early and it is so pretty! It just puts you in the mood for Christmas! The lights are so pretty and hopefully we can make it out sometime this week so that Lily can see the lights. I think that mom and dad (Noni and Pappy) will come over and we will load Lily up in the van and go to a subdivision to view them, that way I can sit in the back and once we get there she can just get up on my shoulder and look out the windows..so hopefully we will have decent weather this next week so we can go and see that. I think Lily will enjoy that since she LOVES lights..

Speaking of lights we redid Lily's room (really the second bedroom) this fall and it is so cool! Check out the pictures of her room. It is a therapy/play room. Pappy built Lily a swing out of her wagon that she got for her first Christmas. We haven't really had a chance to use it much and I hated the fact that it was just sitting in storage so Pappy came up with a great idea to take the wheels off of it (it has a wood base) and make it into a swing for her room. It works perfectly for Lily, she can lay flat and swing. We put a couple of laminate towers in the room with drawers to hold all of her switches and things then put rope lights around the room where she can see them. It is really really cool too! She can control the lights with her switch too so she can turn them off and on. She loves it and it certainly helps to break the day up.

She is FINALLY branching out on her video selection too! She is FINALLY watching Blues Clues and Dora..WHEW! Don't get me wrong, I LOVE Oswald but it is nice to actually be able to throw something new on now expecially something that teaches her things. She still will NOT watch Elmo...something about Elmo really makes her mad or scared. She used to LOVE Elmo but now if you put Elmo on she just cries and cries. I thought maybe I would try her on Sesame Street again and she did fine until it got to Elmo's World then she just lost it SO no more of that!

She is getting so big and it is amazing to see her grow up. I have been so blessed with the greatest gift! She is so funny and as independant as she can be and I bet if she didn't have SMA then she would be all over the place giving me a run for my money! She is only 2 1/2 but I think I can see that she is NOT a girly girl..she seems to be more of a tomboy which is fine with me. She has no interest in clothing or girly things but likes things "rough" and is a rough neck girl. She loves to bounce and be "roughed up" by me. When she swings it has to be high and fast, nothing slow and easy for her! She has also gained alot of strength in the last few months as well. She is moving her legs LOTS in the tub and loves to show off how she can squeeze her legs and if you don't make a big deal everytime she does it she lets you know by yelling at you! She loves to be the center of attention and will entertain you forever with making faces to make you laugh.

We are still working on the responding part, she needs to learn yes and no so that others can tell what she wants. I have not given up on her talking but we are looking at alternative methods for her speaking such as speech devices and such. I still think she will talk in her own way but it won't be like you and I talk..that is just to hard for her to do. The things we take for granted are amazing...she has to really work to get sound out and it seems like between the shaking of her tongue and trying to get enough breath over the vocal cords it is just alot of work. She is very smart and knows how to communicate with me but it is not in a way that others would understand so we are going to have to really work one that. Our therapist are AWSOME and I love our team now. We have a great group of people who work with Lily and I am so thankful for each one of them. The do such a great job! We have added a new Speech Therapist since I last updated the journal AND we have added a DI (Developmental Interventionist) as well. Lily also has a Assistive Technology person and a Nutritionist who is AWSOME and listens to me about the diet that Lily is on. So many people have problems with nutritionist's believing in "the diet" or Amino Acid diet for our kids but I am firm believer on it. I feel it is one of the things that keeps Lily healthy and strong and this one nutritionist that GETS IT!

Some of you have asked how the "divorce situation" or "daddy" situation is going. I won't go into many details here since it is the internet BUT Brian is very uninvolved. He has not spent time with Lily since September (except for 5-10 minutes here and there) and it is really sad. I am fine with it and of course Lily being 2 1/2 doesn't know any different. I wish it could be different but it isn't.....I guess he feels that as long as we are recieving child support then his duty is done but...oh well I could write a book about that issue alone! Lets just say that we are fine and Lily has lots of good male influence in her life right now.

Well...it is bath time for the girl :) I have SO missed writing in this! I guess you all will get a WHOLE lot of entries until I have it out of my system again! It is so much fun to once again be writing about my girl and all the things that she is doing!

Hugs to all and we are PRAYING hard for a CURE in 2004!!!

Oh yeah..one website to check out (among all the others) is www.smafoundation.com. They are doing a GREAT job spreading awareness and will keep you up-to-date on what is going on with research and all that.

Lily sends hugs and kisses to ALL!!!!!


December 22, 2003 Well, here it is just a few short days before Christmas! Yeah! The house is decorated (well it has been for a week or so now) and it just FEELS like Christmas now! I love this! The fun of spending it with my girl is WAY to exciting!

Today we did art again...Lily colored a Christmas tree (I helped by coloring the ornaments and Pappy did the star on top) then she colored a picture of a present. She did a REALLY good job and she does seem to like coloring when she gets into it. I took some pictures so that I could put them on the website of her coloring and then I am going to try and scan the pictures that she colored to put on the website as well. She does a really great job with her arm sling and is able to really move that arm really well. I just have to sorta velcro the marker in her hand so that she can hold onto it.

Since she is so much into her baths she took a whole HOUR this afternoon for a bath. She loves the feeling of being able to kick her legs around and plus it must just feel good to her. She can bring her legs together and then let them fall back apart plus she likes to push things around in the water. The NON-fun part of the bath is the clean up process! She starts off on her bath chair but then I have to take that out and put towels on the bottom of the tub (folded) so that they keep her head above water..it is such a mess and then afterward I have to spin the towels out in the washing machine BUT it is certainly worth it to watch her move around so much in the water. She used to be very scared to be down in the tub with water but she seems to have gotten over that since she found out that she can REALLY move those legs and arms in the water. It makes me happy to see her so happy in there! She looked like a PRUNE when she finally got out (and trust me..she STILL didn't want to get out...but I had to get her out!). She just is so darn cute!

She had some "bowel" problems this morning which meant that she had to have a suppository..yuck! Poor little thing, her belly must just cramp up something awful when she gets one! She just cried and cried so we had a cuddle session in the rocking chair..which always makes things better (for both her AND me). After she got settled then we sang Christmas songs together (if you call my answering machine you can hear her singing "We Wish You a Merry Christmas" which is pretty cute if I say so myself.

We both had a pretty good day really...Pappy of course stopped over and Noni came for a short bit but went to the grocery for me so she didn't stay (I am no longer grocery shopping while it is cold and flu season).

Oh yeah, before I forget Lily's Great Uncle Steve (my uncle) and my Cousin Megan came over last night and brought Lily her Christmas gift...it is SO cute! It is a very cute Gymboree outfit...and it has the cutest hat with it! It will be her boating outfit. Thanks to them for the great gifts!!!!

Hugs to all and Lily sends kisses to her many "fans"!


December 28, 2003 Gosh I can't believe that Christmas has come and gone now! What a great time we had this year with Lily's 3rd Christmas. I will try to give a "brief" update (ha ha) on our comings and goings....

On Christmas Eve we traveled to Cincinnatti to spend time with my Dad's family. We went to Aunt Bonnie's and Uncle Gary's and it was very nice. We got to see Brian, Margo, and the kids. Grandma and of course Noni and Pappy were there too. It was a nice night, no rain and Lily really enjoyed knowing that she was going somewhere. She got dressed in her pretty Christmas dress and KNEW she was adorable. We spent the evening just talking and of course opening presents. Lily got a pretty box with money in it and in her stocking was a music CD (she LOVES music). The food was very good and it was just alot of fun to be out of the house. Lily was really good and I think she enjoyed seeing all the kids having a good time.

Of course the BIG day was Christmas....when we got home from Cincinnatti I got her ready for bed (it was around 10:30 or so) then took her in to rock her like we always do. I talked to her about Christmas and what was going to happen...she is only 2 1/2 so I still have another year to decide about HOW I am going to incorporate Santa into the mix. Having not celebrated Christmas for so long (another LONG story for another day :)) it is weird to be really into it again BUT of course with Lily it is SO much fun! Anyway..we sat in the rocking chair for a while and I talked to her about the meaing of Christmas and who was coming the next day, and what we were going to do. She must have gotten so excited that she wouldn't go to sleep! It was LATE when she finally drifted off (around 1am or so) and she laid back on her bipap chattering away and yelling "MOM" whenever she felt like it. I had to keep going back and telling her that Christmas wasn't going to come if she didn't go to sleep!!! She slept in the next morning so I got up and got things ready (I stayed up pretty late myself) and around 11am Noni and Pappy came over bearing LOTS of gifts of course. Uncle Steve came with donuts (no cooking for me :)) and Uncle Travis and Aunt Dena came too. We had a great morning of opening gifts with family and friends. Lily got lots of wonderful toys and since she is SO into toys now it will be fun to play with her! Lily all time favorite gift of the whole day was this magic wand....it has a light that flashes and goes "BRRRRINGGGGG"....she just LOVES it. Her second favorite gift is a little Groovy Girls doll that Kim McAdams sent her. Of course she really likes all the stuff she got....and the EASEL is my favorite toy she got. It makes it so easy for her to color which she is doing alot of now!

We have had a wonderful few days since Christmas. Lily has been playing lots and today it was warm enough to go outside for a time. It is supposed to rain tomorrow so I guess our outside in December days are over again!

I am will be working on Lily's SMA angels website in the next few weeks..so it is under construction for a bit and that is why I started the journal here on this site. I will probably end up incorporating this journal with the other one once I get things the way I want them. Be sure to check out the picture page, I will change them around alot for now. I will let everyone know when Lily's website is back up and ready to go.

Thanks for keeping up with us through the years...and I hope that you will come back and visit and catch up with Lily often again. We have had such a wonderful year this year and are looking forward to many many more years to come! Pray for a cure in 2004 as well!!! They are so close (check out the links on the bottom of the page to go to sites that have reseach updates on them). Hugs to all!!!!


December 29, 2003 Just a regular day...EXCEPT that it is SO much fun to have Lily PLAYING with things. I have figured out a way to keep Lily's switch in her hand which makes it SO nice! I can actually walk out of the room leaving her with a toy and her switch...and I don't have to just sit there and keep putting it back in her hand. She thinks it is pretty cool too :) We did a little more coloring today and she is so funny doing that..she just talks and talks the whole time she colors, it is cute.

One of the HIGHLIGHTS of the day was the 15 minutes that Lily just sat there and giggled at NOTHING..or at least nothing that I could see! I had brought her into the living room and put her in her chair while I went back to get her something to play with. When I came back into the room she was just laying there laughing...but I couldn't see ANYTHING to laugh at. The TV was off, there was no toys, and I was NOT doing anything to her...but here she was just giggling so hard that she got hic-ups. When she does stuff like this I KNOW she is being entertained by angels..and when I asked her if the angels were making her laugh she said "u-hu". I can just imadgine the sweet angels (maybe her brother Nathan included) playing with her. It was so cute.....

Other than that nothing major today, just a day to play with things. It was rainy and yucky out so no going outside today. Sooooooo...goodnight!!!!

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