*Lily's January '04 Journal*

January 2004



January 1, 2004 "Happy New Year" everyone! I am so looking forward to another GREAT year again with my "baby girl".

Lily stayed up past midnight tonight and Partied on...LOL...she was so cute! We got the feather boa's out and dressed up and just danced around the room at midnight. Check out the pictures of her in her pretty purple hat and feather boa on the picture page.

We went for a drive today and just had a nice day of getting out. We are avoiding shopping and such because EVERYONE is sick it seems like so we just got in the van this afternoon and drove around. It was nice for both of us to just get out of the house. She chattered away in the back seat (watching her DVD's of course) and I had a nice time just looking around. We drove to Lexington and checked things out that way and checked out all the places we want to go shop this coming spring and summer ha ha.

When we got home we got into party gear for the New Year...she thought it was alot of fun. At midnight someone down the street was shooting off fireworks so I threw a blanket over her and outside we went to watch that..she thought it was very cool to be outside after dark with it being so COLD out! She sang and sang while we yelled "Happy New Year". It was a fun night!

I wish everyone a healthy and Happy New Year! I pray for a cure this year so that Lily and I can WALK outside together and party NEXT YEAR! What a blessing it is to be able to be with the person that I love in the New Year...Miss Lily! She is amazing and such a joy to be around and I didn't miss being out in the crowds at all! She is better company than anyone else I can think of!!!!

Hugs and Kisses to all!!!!


January 3, 2004 Hello, Hello, Hello.....first before starting I want to update you all on Cole, he is still battling right now so I thank you all for your prayers for him. Make sure you visit his website at www.our-sma-angels.com/cole.

Ok...not much is going on here in the old homestead. Today Zack (Lily's half brother) and Donna (his mom...LONG story) came over to exchange gifts. They brought Lily a very cute little toy that is already adapted, it is a vibrating lightening bug that plays music. It is SO cute!!! She can turn it off and on...and also they brought her a very big girl toy, actually something that I have wanted to use for preschool stuff, counting bears. They are cute. They stayed for a while looking at Lily's room and just talking.

Other than that I feel like Lily is REALLY REALLY bored with everything. Her video's are boring to her now, she plays with her toys but only for short bits of time, and then it seems as if there is nothing for her to do. I am so scared to take her out and about with it being cold and flu season, I would never forgive myself if she got sick but I know that is what she wants to do. She got so used to running around, shopping (her favorite thing to do) and being in the mall. I almost took her to the mall the other day but then I chickened out scared that she might end up with the flu or something. I am lost...I wish I could just protect her and still take her out but I live in fear of her catching something that I can't handle. I know I can't keep her in a bubble but this year with the flu being so bad I am scared that we will be out and she would catch it. I certainly don't mind taking care of a cold here...but the flu? We could end up in the hospital so easy! I don't want her to catch a cold either but I am not so scared of that (even though it is alot of work for me AND her) but the flu freaks me out! Uggggggg...I know Lily is bored and I am wondering if I can brave the mall maybe once a week or once every two weeks just so she can break the bordom that I know she is going through. I am hoping that we get the computer for her very very soon so she has something else to play with. I am holding on to just a FEW short months before spring comes!!!! It can't come quick enough for ME!!!!

Oh well..enough about THAT! We are doing well and things are getting ready to change some starting next week. I start school on Monday! I am really excited! It is an online school (don't worry I have checked it ALL out) for Medical Transcription. I have to have a job, I have to make money YET I can't leave Lily at all. We tried to get nursing set up this past fall and it was a HUGE disaster! I wanted to go to school to be a nurse but it didn't work out. The nursing was horrible and the BEST one could only come once a week if that. Then and there I felt trapped, I know that I need to work but how could I work and take care of Lily? There was no other nursing companies that would come out to Shelby County so I was kinda stuck. Then a friend of mine with an SMA child told me about doing Medical Transcription and so I have been checking into it and I am doing it. She has done it since 1994 and she has been able to stay home with her kids. So I am going to do it as well and be able to stay home with Lily. Please please please do me a favor and pray for me with this! It is a tough course and I will have to working very very hard!!!! I am nervous but excited! Then I have to worry about finding a job...but the other mom will be helping me.

That is really all for now...tomorrow if it is nice out I will probably take Lily out for a drive to at least get her out of the house some and she does seem to enjoy that but I feel like she is betrayed when we come home without stopping anywhere! I could use some prayers to get her interested in things..oh well I could go on and on about that but I won't (I will save it for another day on the journal). Hugs to all and God bless!


January 12, 2004 Hello! I have SO much to write about so you had better grab a seat and something to drink while you read! I will TRY and keep it short and sweet! First of all I have a couple of updates to write about some of the kids that I have asked for prayers for. First of all Cole, the little boy I had told you about a couple of weeks or so ago. Cole is a little miracle boy! He has pretty much gotten over his illness and is back to his smiley self. He is amazing and SO strong! His parents did an amazing job (of course) and he is back to watching his favorite video's and just happy again. NOW about Conner...he is still in the hospital in Boston and tomorrow he will undergo surgery to have a trach. It is a long surgery and I am certain they would appriciate any prayers that you could throw up for him. He is an amazing little boy as well and is on the weaker side of the SMA type 1's but has fought so amazingly but he is having some problems and his parents have thought long and hard about this but they feel that this surgery is the BEST thing for him and I certainly support them! Anyway Karen and Bill have done such a fabulous job fighting for what is best for Conner! He is such a happy beautiful little guy who is nicknamed "Smiley Riley"...I have put a picture of him on the photo page for you all to see!

Now onto OUR adventures for the weekend....on Friday Miss Rhonda came to Play with Lily (she is Lily's DI or Developmental Interventionist), we put her in the stander and God love her heart..she just cries and cries when we put her in it. It has been just awful and I HATE to see her cry! We tired all kinds of different things to entertain her and NOTHING was seeming to work. So I took a break from it this weekend since we had some things to do...so today I thought I would try something different when it came to "stander time". I had in the living room instead of the bedroom and I put on her FAVORITE video, Oswald and the Big Bananna, and she DIDN'T cry when I put her in, then I got her strapped in and up and SHE WAS FINE! She stayed in the stander for 45 minutes and was FINE! She was almost totally upright, smiling and happy! I put some toys on her tray and she had fun just playing around with them and watching her TV so NOW I know what to put in to make her happy! LOL..she IS rotten and just didn't want to PLAY with mommy when she was in it!

On Sunday we had my belated Birthday dinner, it was so much fun! Lily was a good girl and I had a nice time with my family and I got alot of nice things. Tomorrow my last gift will arrive from my Uncle Steve..an office chair with a VIBRATER in it! YEAH that will be so nice since I am spending so much time at the computer doing school work. I can be comfortable!!! I am excited and can't thank Uncle Steve enough for that! Anyway...we had a GREAT meal and had a great time talking with everyone! Travis and Dena brought their nephew (well actually Dena's nephew) Drew (or Doobie) and he just LOVES Lily! I can't BELIEVE that I didn't take my camera so that I could get a picture of them laying on the bed watching video's! Doobie would just lay there holding her hand then every now and then he would lean over and kiss her every once in a while! He is her age (just about a month younger than Lily) and they are SO cute together! Lily's boyfriend Colin (www.our-sma-angels.com/oneills) would be jealous!!! Anyway a GREAT time was had by all!

I guess that is all of the big adventures for the weekend! Tomorrow is speech therapy with Miss Karen then I think that Wednesday we might head on over to the mall again for some fun outting time! Make sure you check out Conner's picture on the next page and say lots of prayers for him with his surgery tomorrow! Lily sends hugs and kisses!!!!!


January 16, 2004 First I want to update you all on Connor, he is doing GREAT! There is really nothing else I can tell you (which is good), they are just waiting the 10 days until they get get OUT and get back home again. Isn't that wonderful? Karen and Bill are so happy with everything and know the decision they made is the right one for Connor.

It has also been a while since I have updated you all on Cole as well...he is feeling MUCH MUCH MUCH better and is pretty much back to his baseline. What an amazing kid he is...

Ok...now for the "princess diaries" here. I am going to start off with a disclaimer (ha ha). I am going to rattle a little bit and do something that I NEVER do and that is to talk about Lily's dad Brian. My mom (Noni) and I were sitting in the living room last night watching Lily and we were talking about things. We were talking about Lily being a pistol when she was born (she WAS..she NEVER quit crying and was just all round mean!) and how funny she is and how much we just LOVE to be with her. I mean that, there is never a day that I couldn't just look at her all day! She is so darn funny! We talked about the hard times when she was going through reflux, and we talked about the happy times too. We talked about all the funny things she does to entertain us like make faces, funny noises, etc. and how she likes to "dictate" all day to me or whomever is here. She is just amazing and is fun to be with! In the mist of all of this mom just looked at me and said "I can't understand why someone would NOT want to spend as much time as they can with her" and I knew she was talking about Brian (or D.A.D, Dumb-A**-Dad). Now I know that I don't talk about him much (there isn't much to talk about really) but I will take a moment to "vent" as it were. When Brian and I were together and had Nathan Brian was a pitiful father, not spending time with Nathan and before we knew it, Nathan was gone. After that Brian and I decided to have another child...now I can look back and say that I always KNEW Brian was no good and not a good father. I always covered for him.....anyway we had Lily, then came the diagnosis again and all the hard times that came with it. Home life was horrible! Brian was always in a bad mood and I felt like I had to walk on egg shells around the house. Finally it all came to a head and he moved in with his new girlfriend and while I was angry at the time I can honestly look back and say "ahhhhh, that is when things really began getting better". It was amazing, once I got over the anger of what he did I can now honestly say that was the BEST thing that could have happened. Now here it is 1 1/2 years later and WOW the difference is amazing for ME really! The only part that still makes me angry is his utter disreguard of his daughter, he has literally forsaken her. When we first split up Brian told my parents that Lily and I would NEVER want for anything and that he would support us and help me with Lily. Yeah right...we haven't seen him since September and even before that it was seldom, we haven't recieved Child Support in ages (I am taking him to court this month for that) and basically he has just wiped us out of his life period! I am not sad by this (for me) but for Lily sometimes I get angry, HOW can a person NOT want to spend time with such a precious gift as Lily. My whole WORLD is Lily, from the moment I wake up to the moment I go to sleep she is MY life. How could someone who is her own flesh and blood forsake something so precious? Ahhhhh, things in this life that I will never understand. But it does make me angry for HER...what an IDIOT (I have a better term BUT will not say it) he is! Oh well...I guess that is enough of that venting! Somedays I just feel more hurt (for Lily) than others.

I am sorry to load all that on the journal....I will update again tonight and will have a MUCH better outlook! HUGS to all!


January 17, 2004 Just thought I would take a moment this morning before I started on my studies to say that I am terribly sorry to "unload" yesterday on the journal. Some days I just get frustrated and a little angry BUT we are ok and happy whether or not Brian comes to see Lily or not (in fact I am glad he doesn't...). Ok that is enough about that.

We had a good day yesterday. Lily and I went to the mall yesterday to hang out for a little bit. I can't explain how much FUN it is to be out and about with her! We both get so bored of being in the house and so the once a week going to the mall is a nice break for us now. Lily enjoy's it and I enjoy watching her enjoy it! We sit by the fountain for a LONG time and just watch the water, look at the palm trees they have, and watch the people go by. Lily could do that for hours most days. Sometimes people stop by and tell me how beautiful she is and of course it makes my buttons about burst off because she IS beautiful! I used to be offended easy when people would tell me things like "my she's a good girl" or "awwww she must be sleeping" or any host of other things they say, I have even had a woman ask me WHERE she could get a stroller like that (laughing I told her she could have one for about 4000 dollars, just call National Seating and Mobility, the look on her face was priceless) but now I realize just how "normal" Lily must look! I know that sounds weird but other than the fact she cannot move she looks "normal" and you would never guess she had a horrible genetic disease! I am proud of that I will admit. An older woman stopped us yesterday and told me that my little girl was beautiful and "so well behaved". I smiled and told her thank you, not wanting to go into why she was so good and just laying in the stroller. Anyway, she leaned over to tell Lily buy and Lily just smiled up at her so at that oint I told her that my daughter couldn't move at all except a little bit in her wrists. So for the next 10 minutes I told her about SMA, what it does, all the facts and figures, etc. She got big tears in her eyes (of course, who wouldn't) and told me that she would pray for Lily and all the other little ones. She just looked at Lily and told her what a wonderful little girl she is and that she would be praying for her and all her friends. I of course got big tears in MY eyes as well. While I hate the fact that Lily has SMA it has brought so many people, strangers, into her life. There is not a life that she doesn't touch, then add on top of that Nathan's story and people just want to sob! I keep a picture of Natie bug on the stroller when we go out so that when I am telling the story of Lily and SMA I can show them Nathan as well. He touches many lifes as well and cannot ever be forgotten! Ok...I am tearing up now too :) I am going to put a picture of Nathan on the photo page so go and check it out...he is a beautiful beautiful beautiful little boy! I miss his so much each and everyday but his presence is certainly around, I have pictures all over the place of my precious firstborn son. Ok....

I stayed up WAY to late cleaning last night but here I am up early ready to study (I am proud of myself.....) so I guess that is what I am off to do! Hugs to everyone and make sure you check out Lily's big brother, her angel, my angel, my heart and soul....I could go on and on...


January 17, 2004 Not much to report here, it was a yucky rainy day. We did sleep in late today (expecially mommy :)) then sorta just layed around all day. Lily was probably bored but of course we did go back and swing and I got her in her sling for a long time where we knocked blocks around, cars, little bears, and dolls. Lily stayed up WAY to late so we will probably sleep in tomorrow morning as well (yeah).

I can't believe it but I am going to the movies with a friend of mine tomorrow...MY GOSH I haven't seen a movie in a theater in so long! We are going to see "Along Came Polly" because I LOVE Ben Stiller and think he is so darn funny! Then we will go out for dinner..gosh I won't know what to do with myself seeing a MOVIE! I think I will still miss Lily :). She is staying over at Noni and Pappy's for the afternoon so it will be a nice outting and nice day for both of us.

No updates on anyone today, I think all our buddies are doing well YEAH!!!!

I guess that is it for the day...just a nice boring, lazy, rainy, day today!!! Hugs to all!


January 18, 2004 Well..I am preparing for battle again! Ugggggg! I recieved a letter in the mail from Medicaid that says that they are denying Lily for her cough machine! Yeah, right! The "short" story is this...several months ago I had my doctor give us a script for another Cough Assist machine because the one we have had for the past 2 years has broken 3 seperate times. As some of you know, the Cough Machine is one of Lily's most important machines (well, they are all important but you know what I mean), it has saved her live numerous times the first year of her life and we have faithfully done the cough machine since January of 2002 when she was only 7 months old! So anyway, our first cough machine broke 3 seperate times and because our first insurance company (my ex carries insurance on Lily as well as her having Medicaid, and in 2003 the insurance switched to Blue Cross and Blue Shield) had bought and paid for the Cough Assist. The first time it broke the DME company came out and fixed it, after that they told us their warranty had run out and because is was OUR machine we had to have it fixed ourselves. So anyway...one of my Dad's friends took a look at it and fixed it. The time before then Noni and I fixed it ourselves....ok so anyway I have always thought it would be safe to have an extra cough machine on hand since we it is very necessary to Lily and because ours is so undependable and breaking (I mean come on, the on off switch broke off on it) I thought it was necessary to have another one. So this fall my Doctor wrote out the script for it and we got another Cough Machine in October YEAH. Well now I recieved this letter from Medicaid saying that they will no longer be paying for it, that it has been denied because we already have one working one. Anyway.....to make this long story short tomorrow I will be going to battle for this. We need this newer Cough Machine and since it WAS approved 4 months or so ago....hey they are NOT getting this one back! I know none of this is probably not making much sense but it is so dumb that I would have to fight for something like this, I mean I do NOT have time to be dealing with stupidity! Medicaid has NEVER paid for anything for Lily, I mean we must be the CHEAPEST people for them ever! Humana (our first insurance company) bought and paid for ever piece of equiptment that we have. Lily hardly ever goes to the doctor, she has NOT been hospitalized except for her Nissen surgery which Humana paid for. I am NOT giving this cough machine back, no way! Furthermore in the spring we will begin the process of getting another bipap AND a powerchair too! Shock and awe on their part huh? Ok...sorry if none of that made sense..I was just venting!

Well, I did get out of the house today and saw a movie with a friend of mine. We went to see "Then Came Polly" or something like that (I can't remember the name, but it is a Ben Stiller movie with Jennifer Aniston in it). It was cute and funny..but I would wait for the video to come out if you want to see it. It is really just like all of Ben Stiller's movies, the same plot line, the same everything but still it was cute and funny. Afterwards we went and ate Mexican, it was nice. I did miss my girl but it was nice to get out without her (uggggg is that wrong to say :)).

Lily stayed home with Noni and Pappy and she had a good time. She must have swang pretty much the whole time I was gone and little rotten butt didn't take a nap at all AGAIN! She never takes naps anymore! I guess she is afraid that she might miss something! Trust me, there isn't much to miss here at our house right now. Anyway, when I came home and Noni and Pappy left we just snuggled in on the cough so it was a fun day!

That is it! Tomorrow is PT and hopefully we can start discussing the powerchair thing! I am SO ready to get the ball rolling on this! I want her to be mobile and I know she is so ready for it. All she needs is a smaller bipap and away we go! It will be so much fun to see her going around on her own *sniff, sniff* and looking like a big girl! My baby is growing up way to quick! I am thrilled that she IS growing up but I still will miss having my baby!

Well....I better get off and head to bed! Hugs to all!!!!


Thursday, January 22, 2004

Well, if I can figure out the program again I will have Lily's website (the www.our-sma-angels.com/lily) up and running again but I have to figure out HOW to do it again! So just be patient and I will be working on that one again.

Not much going on BUT I have to say YEAH Lily is getting her computer SOON! I am so excited for her, it will be so nice to have her able to play with something that will interact with her. I can't WAIT to start her on all that! Think of the things she will be learning and doing...ahhhhh she can be as smart as she wants to be!

Next big project is working on getting her a Power Chair. I tried to call our Wheelchair guy today but couldn't get ahold of him so hopefully he will call me back tomorrow. I am ready to get the show on the road with this. I think it will be so exciting to see her being mobile and I know it will be HARD to find something that works for her but I will DO it because it is something that will give her the independance she needs SO much. I know it will take so much time to get things the way we want them for it and so I want to start NOW with it. I would like to keep my fingers crossed that we could have it by the conference in June but seriously I doubt it. I know she is so ready for it so please please please PRAY that it all works out for her with it.

She is doing so great in her stander now, and she looks so great in it. We have worked up to doing it for 30 minutes in the morning and 15 minutes at night. Our goal is to do it for a total of an hour a day 5 days a week (taking the weekends off..or any other days that we might need). It is really getting her legs in shape (stretched out) and I am not having to spend so much time stretching her legs. I have seen a HUGE difference in the tub with her being able to move them around. It is awsome!

Another big thing is her arms in the sling :) She is doing such a GREAT job playing with things and her favorite things to do is to play with her little doll and her wind chimes (and make LOTS of loud music!). It is funny to see her face as she runs her hands through it. My next project with the sling is to make some sort of arm things for her to play with toys in the tub. I want her to be able to actually play with her tub toys more then she does right now. I am always trying to think of ways for her to move more...it is SO good for her and I have to keep her flexible and moving for that CURE that is going to come!

She had Miss Rhonda here today (her DI) and they played. She is vocalizing so much more and getting more sound in her voice...she IS talking, I just wish I could understand what she is saying!!! She is constantly talking, in her own language! She can say MOM when she REALLY wants something but mainly she is jabbering.

Tomorrow she is having her little buddy Doobie over to play with her (he is my brother Travis' girlfriends nephew :)) and he LOVES Lily so much and thinks she is TO cool! When he comes over (I watch him sometimes) he wants to do things like Lily and it is cute. One day he wanted me to put her bipap mask on him, he wanted me to suction him, and all that. I did let him wear Lily's pulse ox one day..and he went to sleep with it on. We will go back to Lily's "Princess Room" and play hard I am sure. We have lots of stuff for them to do tomorrow and you KNOW I will have lots of pictures.

That is all for now...school is going fine, slow but fine. I am having a tough time with this next part (grammer and all) but am taking my time trying to REMEMBER all those rules and things! I will get through it....

Hugs to all!!!!


January 29, 2004

I am SOOOOOOO excited! Today Lily had 2 therapists, Miss Rhonda (her Developmental Interventionist) and Miss Robin (Assistive Technology) and WE ARE FINALLY GETTING PRINCESS LILY A COMPUTER! It is so exciting! She told me to figure out some of the stuff that I expecially want for it, check out computers (laptops) and then in 2 weeks we are starting to get it all. YEAH! How exciting is that? Can you tell I am excited!!!! I will certainly have lots of pictures :)

Today after the therapists left Noni, Lily and I went shopping at the mall. It was fun and tonight I am exhausted! We had a great time walking around and Lily of course always enjoys it. We went to KB Toys in the mall and the funniest thing! We were looking at some toys and showing them to Lily well she kept smiling and looking at something else on the shelf, we figured out what she was smiling and looking at and it was a Tigger! So we grabbed it and was showing it to her and she just fell in love with it! It talks to you and tells you to press on the different body parts. Of course she got it..and just kept smiling at it the whole time. It was cute and of course I was SOOOOO happy that she liked it because Tigger always reminds me of Nathan! That was HIS favorite thing..he loved having me sing the Tigger song to him...so that has special meaning to me :)

Tomorrow morning I have a meeting with the Shelby County School System...grrrrrr...and I am NOT excited about it. Lily has been in First Steps which is an early intervention program here in Kentucky. They provide her with her therapists and all of that. Anyway when Lily turns 3 she will be turned over to the School System and First Steps ends for her. I am nervous and not sure what to expect with all of it. I am going to find an Advocate to help me wade through it all and help me to figure out what Lily's rights are, I mean she is entitled to and Education just like any other kid but with a "Special" child like Lily she will require so much. I know that I will NOT be sending Lily to school for preschool, it is just not something that I feel is necessary for her and I can do preschool here with her. If it is possible (which I will have to fight for it but it can be provided) I would agree to having a teacher come here to the HOUSE but certainly I will not be sending her anywhere at the age of 3! Anyway...I guess that tomorrow will basically just be an introduction for Lily and myself to who we will be dealing with and I am going to tell them that until I search out my options and what the School system is SUPPOSED to provide (in the way of nursing, aides, and equiptment) I won't be agreeing to anything...I have until she is 3 to decide anything. But none the less I am not looking forward to the meeting. I had to come home from the mall tonight and CLEAN so that my house looks presentable as well! So I am tired and heading off to bed.....

Hugs to all and I am sure I will write more about our appointment tomorrow! Wish me luck and wish THEM luck because when it comes to MY daughter I will fight for EVERYTHING that she is entitled to!!!!!

January 27, 2004

Ok I have to share this!!! A few days ago a friend of mine on a chat group that I am on shared the lyric's of a beautiful song by Martina McBride...so today when I was at Wal-Mart I, of course, had to go and check out the CD and of course I bought it. It is BEAUTIFUL with alot of GREAT songs! On my way home I put the CD in and of course was in tears by the time I got home!!! I wanted to share the lyric's of one of the songs that just touched my heart and says EVERYTHING that I feel in my heart! It is NOT the song that I bought the CD for (which THAT song is beautiful too :)) but this song just brought tears to my eyes...so here goes!

~In My Daughter's Eyes~

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see, she was sent to rescue me
I see who I want to be
In my daughter's eyes

In my daughter's eyes everyone is equal
Darkness turns to light and the world is at peace
This miracle God gave to me, gives me strength when I am weak, I find reason to believe in my daughter's eyes.

And when she wraps her hand around my finger
Oh it puts a smile in heart
Everything becomes a little clearer
I realize what life is all about

It's hanging on when your heart has had enough
It's giving more when you feel like giving up
I've seen the light, it's in my daughter's eyes

In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave, maybe raise a family
When I'm gone I hope you see, how happy you made me
For I'll be there, In my daughter's eyes

Isn't that just beautiful! Can you just see HOW much in tears I was? Oh....it is SO true!!! The song that I bought the CD for is called "She's a butterfly" and it is just beautiful!!!

Not much to write about today..so I will end here! Hugs to all!!!

January 26, 2004

As you all know I have been updating Lily's website and going through all the pages and things to see what needs to be updated and added to etc. Well tonight I began reading the articles from our Local Newspaper that were done on Lily when she was just tiny that first year of her life and reflecting on all the things that we have gone through all all the changes.

I never want to take any of this for granted at all. As I began reading through the articles that were done I got tears in my eyes, I can remember the pain of her diagnosis, the fight for getting the insurance to pay for anything, and all the people who stood beside me and helped us out. It has been an amazing journey for us and each day with Lily has been a gift from God. SMA is a horrible disease and I cannot deny that but with it has come so much good in my life and Lily's life that I can never begin to express. I have met so many wonderful people and now have so many wonderful friends, Lily has brought so many wonderful and caring people into my life, people that I would have never met or had the opportunity to know had it not been for SMA. Don't get me wrong, I hate SMA, I hate knowing that my daughter cannot walk, cannot really move, cannot eat, and do all the things that we take for granted each and every day but while I hate the disease I love all the wonderful things that it has brought into my life! It has brought me closer to my family and friends. I could never repay anyone for all that they have done for Lily and me! I thank GOD for all the support we have had the past few years, without it I don't know where I would be!

I have been blessed and when I read those articles I was brought back to the point where the time when I was unsure of what the future would hold. I knew the devistating effect of SMA from losing my precious son and here I held my daughter and thought it was possible to lose her too. I looked at the pictures and remembered how hard it was and how simple things are with her right now. The hard times of putting the BiPap on her in the beginning, coughing her with the machine, and all the numerous things that have become common place and normal in our life today. How scared and afraid I was back then and how confident and calm I am now, how amazing this journey has been.

All I have ever wanted for Lily was to be happy and she is! She is extreamly happy! I wish I could go back to all the doctors and the "nay-sayers" and show them pictures, all the smiles that I get, all the simple ways that Lily says thank you to me. That is the biggest reward of all for a mom! I am doing the best I can and with the help of my family we have created a life for Lily, and not only a life but the life of a "pampered princess"! How amazing is that?

It has been a hard few years and I certainly will not deny that somedays are still hard but certainly the good days FAR outnumber the bad ones!!! Just to see how healthy and happy Lily is makes it all worth while! I can't imadgine how I would have gotten through it all without all of YOU who keep me going each and everyday. You all encourage me and inspire me to continue to do what I am doing! I appriciate all the encouraging notes that I recieve in my email, and all the "pats on the back" that I recieve.

I do want to point out that while reading those stories I looked back on all the people who have donated money and time to help us. I want to thank you ALL for it! I could never express how much I thank you for taking a burden off of me in knowing that money is not something that I need to worry about (much). I have been blessed with being able to stay home even being a single mom now and raise my princess of a daughter and without my family and the help of dear friends (you all know who I am talking about) I would not have been able to do it! I thank you all from the bottom of my heart and will forever be grateful to all that you have done.

I do not take anything for granted, and just knowing that tomorrow I will wake up and go through the day with a precious little girl is amazing. Our life is not typical to others but it is our normal life, everyday has it's ups and downs but just knowing that I will see that sweet smile (or tears in many cases) makes everyday a fun and wonderful experience!

I cannot believe how far we have come since the day of Lily's diagnosis....and how far we will go until that wonderful day that a cure comes for SMA. Thank you all for being there will us on our journey! I love you all!!!

January 25, 2004

It is late and I have been trying to do things on Lily's website..I am grrrrrr! Frustrated! There are things that I just don't understand and once Laura (our webmaster) gets back into town I am going to have to have her fix some stuff and help me understand some of the other things! I admit that I enjoy doing things on it...but some of the things like creating button's and stuff I just don't get! I have totally messed up the guestbook and she will have to fix that then some other little odds and ends are driving me nuts but really it is coming together pretty cute if I do say so myself!

We have done nothing but be inside today! It was raining ICE earlier and so we certainly were NOT going to be getting out in that! We did go out yesterday (Saturday) for a while and ended up heading to Target because I needed juice and things like that I totally will NOT go to Wal-Mart with Lily because I always feel like that is the most germy place in the world! I know that Target has germs but it just feels cleaner! Anyway...I am glad that we did because with all the ice today I wouldn't have had Juice for her formula and baby food either. I have to head to the grocery this week when Noni gets time to watch Lily. Anywho...we went to Target and shopped! We got some Valentines decorations and little gifts for a few of our SMA buddies. Lily got some cute little valentine things so that I could take her "Valentine Pictures" again this year. After Target we headed over to the mall for a while and had a good time.

We stayed up late last night and partied on so we slept in this morning while it was icing up out there! We stayed in PJ's most of the day and snuggled around so that was nice. Lily and I just sorta "rolled" from one room to the next all day today!

One cute thing I have to mention...Lily is growing up SO darn much! For the last week while we are getting ready for bed she has taken to wanting to watch herself in the mirror. I have tried this before but she never seemed to want to "watch herself" at all but all of a sudden she is interested in everything about herself. So when I start getting her ready for bed I bring our big old mirror over (it is a therapy mirror that is not heavy and it is quite large..but it is plastic and has no distortion) and set it in front of her and she "helps" me when I brush her teeth. She has become so very interested in this that tonight when I started getting her ready she began looking for the mirror. We turn the movies off and she helps me by opening her mouth, sticking her toungue out as much as she can (she can't get it past her teeth at all but she tries), and just talks to herself the whole time. Then she watches while I wash her off and then picks out her PJ's (she gets 2 choices) which is so cute! I really enjoy this time with her and I talk to her, and tell her everything that I am doing. I think it is GREAT that she is finally becoming more aware of herself and of course she just LOVES to talk to herself in the mirror..and she knows she is beautiful! I just thought that was so cute!

That is just one thing that shows me how much she is growing up! I could go on and on about things but I won't..we would be here all night long! She is doing great and is amazing! She is moving everything alot more than ever before and she just gets stronger each day! While I know that unless there is a cure she won't sit up or walk it is still nice just to see a little more arm movement, or leg movement, or even just being able to handle an upright postion more than 3 seconds is nice! She loves to sit up on my lap too and look at herself...it is hard to explain but I set her up on my leg, then hold her back and the back of her head so she is sitting up but I am supporting her body and she can sit there for as long as my arms can do it without choking at all which is HUGE for her!

Ok...I guess I best be thinking about heading to bed. I put a few new pictures on the site..I don't have anything new on her Angels website yet but if you feel like looking at what is under-construction feel free to drop over there. The link is at the bottom of the home page on this site! Hugs to all!!!!!

Sunday, January 25, 2004

I just quickly wanted write this in here....

Go check out Lily's website, I have been working on it (don't have many pic's up yet BUT I have changed the one on the frong page and some of the other pages are changed too). I have to help to put pictures on and some of it is still a little off and I will have to talk to my friend who helps me out with the website (Laura)to figure some of it out. BUT some of the backgrounds are changed and it is pretty cool looking if I do say so myself. Like I said it IS under construction still but let me know what you think about it! Remember it is at www.our-sma-angels.com/lily.

I will write more later..I gotta go feed my girl!

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