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.
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 :)
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!
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.
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!
Sunday, January 25, 2004
I just quickly wanted write this in
|December 2001||January 2002||February 2002|
|March 2002||April 2002||May 2002|
|June 2002||July 2002||August 2002|
|September 2002||October 2002||November 2002|
|December 2003||January 2004||February 2004|
|March 2004||April 2004||May 2004|
|June 2004||July 2004||August 2004|
|September 2004||October 2004||November 2004|
|December 2004||January 2005||February 2005|
|March 2005||April 2005||May 2005|
|June 2005||July 2005||August 2005|