*Lily's Sept. '04 Journal*

September 2004


September 29- Hey all!  First I want to thank ALL of you who visit the website, read the journal, and sign the guestbook, it means so much to me!  Lily is to young to understand how much she is loved but one day she will know.

Busy week of course as always.  We are helping Noni and Pappy clean up a duplex they own then of course we had our shopping excursions through the week etc.  Monday we went to the Oxmoor mall, we met Noni there and spent much of the afternoon walking around having fun.  Lily did great, she had preschool that morning/afternoon then we headed to the mall.  She sat up most of the time and did a great job, she probably sat up for a total of 3 hours for the whole day and loved it.  She does so well with it and she seems to be more social (if she can be more social than she already is) and I don't get the question/statement so much "Awwww, she is sleeping isn't she?" which drives me NUTS and then other classic one is from children (who don't annoy me, the parents do), the child goes "Baby" (if the child is a little one) or "look at the baby" (from an older one) and the parents will go "yes, isn't she a pretty baby"....it drives me NUTS!  She doesn't LOOK like a baby does she?  I mean come on, how could ANYONE have a 27-28 lb baby???  Ok, that is a big snotty but still sometimes I get tired of hearing those responses to Lily AND the other one that annoys me is when someone says "Boy, she's got the life doesn't she?" and I so badly want to respond (and I did once) "well, if not being able to walk, eat, sit up, etc. is great to you then YES she has the life" but of course I just smile and say yes she is comfortable.  The other one is "Wow, WHERE did you get such a cool stroller" in which I always smile, tell them Snug Seat for around $5000 and they are dumbstruck right then! 

Ok, I didn't mean to go off on that tangent!  Anyway, Lily is much more social, she enjoys sitting up and I think it puts her on the same level as other kids too so it is great. 

We got a tray for her stroller which came in yesterday and I also got these really cool microphone stand things that clip onto the stroller so I can sling up her arms when she is in the stroller so she can play with things on her tray when sitting up and stuff.  It is wonderful!  I love the tray, it is nice and big and I am sure she will get alot of use out of it with school and playing her computer and stuff like that.  We did try it out for the first time today, we had to run out for a bit to pick up something at the mall so I sat her up, she did pretty good in the mall but for whatever reason that I couldn't figure out she had just tons of secretions and kept getting choked on them, finally she had to lay back because she couldn't handle it and when we left she had to get on her bipap in the van plus I made her stay on it when she got home for a bit too.  I finally figured out why she was having such a hard time, she might not be able to eat things with strawberry's in it!  I put baby food in her formula today with Apple Sauce, Banana's and Strawberry's and I think she was having a rough time handling it (isn't it funny what affects our precious type 1 kids), tonight I made her a new batch of food and she had a much easier time to hopefully tomorrow she can get up for a longer period and get to play with her new tray and microphone things (from now on I am calling it her arm slings).  

School is going good, she did a GREAT job on Monday hanging in there, she did get fussy when she felt like Miss Teresa was doing an activity to long but for the most part she did a fine job.  They told me today she knows her colors, I have no clue how she knows them but she was very accurate with her switch with matching colors so that is cool!  She made an orange fish and pasted aluminum foil for other color on it.  She loves loves loves to use glue....we put a glue stick in her hand and tell her to glue and her little hand just moves back and forth so fast, she thinks it is so cool!  Tomorrow I am setting up her computer on her stroller because they are going to watch her work on the computer on Friday.  She does an 'ok' job on it but needs more practice...we will work on that a few times a week.

Ok...I guess that is our update for right now.  Things are going great, she is beautiful and precious as always!  Oh yeah, we had cable installed back in our bedroom (Lily and I share a bedroom) and she is all into watching NEW stuff, I am excited!  She seems to really like Out of the Box right now and will just sing right along with them and laughs at some of the things they are doing.  Funny thing, for the last few days when she is watching her beloved Oswald there is an episode where Oswald is making Katerina a birthday cake, he works and works and works on making the "big most beautiful birthday cake EVER"....close to the end as Oswald is carrying the cake to the party at the park Egbert and Leo almost run over him on their bike and Oswald drops the cake in the lake...right at that part EVERY time Lily just bursts into tears feeling so bad for Oswald who had worked so hard on that beautiful cake.....it is so funny because right after that she is fine again....she gets it which makes it so cute!!!!

HUGS to all and Lily says "hey".


September 26- Boy oh boy do I have some 'raving' to do here.....sorry! 

Tonight I was doing some filing of some papers that have been laying around for FAR to long, anyway while I was digging in the filing cabinet I came across both Nathan and Lily's medical records.  Anyway, I dragged them out and began reading once again which is a BIG no no because it will get me all riled up and worked up and of course it did.

First is Nathan's medical records, of course his birth stuff then for his monthly well baby check-ups, and of course the infamous well baby check up where it was first suspected that something was wrong.   You go further into it and of course is the recommendation to see a Pediatric Neurologist in there as well.  Then you have notes going back and forth from the Neurologist to the Pediatrician as well and that is where it get ugly.  Several remarks in those notes went like this "mother is in denial", "mother is being difficult" and my personal favorite "mother needs professional help".   Hmmm, lets see, my son, my precious little boy who I loved more than ANYTHING else on this earth was suddenly given a death sentence from a cold hearted neurologist who did nothing to soften the blow, left me crying in a room by myself holding my son who wanted nothing more than to eat or to be held at that very moment.  The 'specialist' coldly tells me my son has what she feels is Spinal Muscular Atrophy infantile form and probably will not live past a year but certainly not past the age of  2.  Then says "I am going to fill some prescriptions for you for blood tests and such" and leaves the room leaving me dumbfounded, offers no comfort or no support from anyone and least of all doesn't tell me ANYTHING about what in the heck is SMA. 

Now...lets fast forward to Lily.   Thankfully when Lily was diagnosed we had a very caring and wonderful doctor for her, when we went to see a Neurologist we went in prepared with what we had researched out and wanted to do for Lily and he was actually very kind.  We had support from our local doctors and of course we had support from Dr. Bach who we had gone to see.   Then we have our several trips to the ER for Lily's severe reflux right before she turned 1.  It was of course serious and we were in what is considered one of the leading Childrens Hospitals, Kosair, around here.  We encounter so many obsticles there, the kept releasing us to go home then we would get home, have to call 911 again and go through the drill several times again.  Finally I had had it, I almost lost Lily and I refused to go home and thanks to Lily's doctor we stayed put and began trying to figure out what was going on.  What I didn't know was that the doctor who was in charge over Lily didn't want to treat her, after all she had a terminal illness and she was "going to die anyway" (direct quote from that doctor who will remain nameless).  She proceeds to tell my doctor that she doesn't understand why "she lets Lily's parents boss her around so much, Lily is going to die" yet Dr. Canby does NOT give up and fights for us!  We fought with nutritionists, Respiratory therapists, doctors, etc. just trying to get the care we needed for Lily at that time, the ONLY people we did NOT have to fight with was the nurses who were AMAZING!  Anyway...we fought to have her flown out of there on a med-flight once we figured out that it was reflux causing the problems to New Jersey yet another road block from the 'well meaning doctor' who has now labled me as a very difficult parent.  Finally it took one morning of Lily crashing, badly, where they thought we were going to lose her with me pushing the doctors and nurses out of the way so I could grab the cough machine and help her and that afternoon we were on our way to New Jersey where things went smoothly from that point on.

That shouldn't have to happen to parents at all, they saw my daughter and decided that she had no quality of life yet they do  not see her when she is at home laughing at a movie, or giggling when I tickle her arm or feet.  They don't see the little girl who loves to be shopping, or the little girl who loves nothing more than getting on her swing and going as high and as fast as she can.  They don't see those things....they don't see the love she has on a day to day basis when there are other kids in this world who are by all means 'normal' healthy kids who have parents who don't care, kids who are abused and unloved....where is their quality of life.  How DARE a doctor (who when they go to medical school they are in a class called "god complex 101") tell ME what my childrens quailty of life is or will be when all I see is a little girl who amazes me each day. 

You know, there is more to life than being 'normal', there is so much more to life than what we think.  We all take so many things for granted and sometimes it takes something as simple as the smile on my daughters face in the morning to put things in perspective...or to remember that little boy that I held in my arms that I loved so much more than I ever thought I could love anything in my life....now that my friends is what I call a wonderful and amazing quality of life......and I have it each and everyday.....

I was robbed with Nathan, I didn't know then what I know now.....but by loving my daughter and giving her the best life I can possibly give her I am honoring his memory each and everyday.  He is a part, a HUGE part of this....his little face is all over this house smiling back at me.  I can't change what happened with him, I can't go back and do things different but because Nathan I became a better person, a strong woman....and Lily continues his legacy today by being the fiesty little rotten butt that she is :-).  They both have brought so much joy into my life and I am so honored and proud to be their mother....

Sorry to get all sappy on you all.....just had to get some of that out ;)  Excuse the typo's, it is late and I need to be in bed since Lily has school tomorrow!  We all send out hugs to you....tomorrow night I will update what we have been doing this last week and will update on school progress....HUGS!


September 21-  I have so much to be proud of!  Not only is Lily doing GREAT with doing activites through the day and doing fine with preschool, she is sitting up like a CHAMP.   That may seem like not such a huge deal to many but to me it is HUGE. 

Lets start off with preschool stuff, she had preschool on Monday and she started off strong, lots of smiles and responses then during the middle of the class everyone was working on trying to get this one switch to work and they were not giving her anything at all to do, she they lost her.  It started off with her fussing, then it turned into an all our crying thing getting her all choked up and she had to be laid back down, at that point she just shut down and wouldn't have anything at all to do with them.  It was not her fault and she started off fine and in a great mood...so I would still classify that as a good day for her.  Everyday (mainly) we have been doing activities such as making pictures, painting, coloring, and making frames.  She and I have had a GREAT time doing it and even when she is fussing and doesn't want to do it I still keep at it helping her work through it.  She needs to know there is more to live than TV, what we are doing isn't hard expecially with me helping her, and it is time we get to spend together doing something fun and educational.   By the age of 3 most kids are doing things they don't like...and I make sure I don't frustrate her too.  I can tell the difference between her being frustrated about something (ie. with preschool on Monday) and just being a 'brat' and wanting her way.  She is finally settling into doing something each day and not just heading out to go shopping or something like that, I can forsee her being a HUGE arts and crafts girl and we are making frames and such for EVERYONE around us!  Tomorrow it is Halloween Decoration day, we will make some simple decorations for Halloween so FUN!  She is getting quite good at putting glue on things, I give her a paintbrush and a dab of glue and away she goes so her job is getting the glue on it and my job is to put the decorations on the stuff, it is quite fun and a great way for me to spend time with my beautiful, smart, funny, adorable daughter!  She is quite the little girl isn't she?

So today she was bored, bored bored bored!  Yesterday we spent some time outside but she just isn't happy just sitting there doing nothing.  She can handle about 10 mintues on the swing outside before she gets bored and wants some ACTION!  I finally got a little frustrated yesterday and just brought her video's outside on the DVD player, let me tell you that must have been a funny site for some of the neighbors!  Here is my daughter outside with her little DVD player but like I told Noni, at least she was getting some fresh air!  Finding things to do outside in our yard is hard, going on a walk in the neighborhood is hard too (plus I hate to exercise)...but I guess I am just going to have to DO IT!  I need it, and she does like to be moving at ALL TIMES which I guess I do too huh?  Anyway, so today after doing our little preschool work (not with the teachers...just us) we packed up and headed to the outdoor mall in Louisville, it is a beautiful place to walk around with LOTS of stuff to look at and check out like fountains, shops and LOTS of people.  So off we go, she was as happy as a little clam and she sat straight up in her stroller for 2 hours!  She did GREAT, not getting chokey at all or anything and she just LOVES to be sitting up in it!  She is sooooooo ready for a powerchair!  Yeah!  Anyway, she rode around checking stuff out, talking away just so happy!  I have to admit when I do that (sitting her up) I do get a tad bit nervous but never once did she give me any trouble other than the fact she doesn't want me to STOP moving or walking!  I can't set on a bench or anything she wants to keep moving all the time so we did and it was fun.   Winter is going to be very tough for her because she isn't used to staying home day in and day out, she is used to getting out and about alot so I imagine it will be a boring winter for her.  We will head off to the malls and such but just not every single day, to many germs out there!  We will be doing LOTS of crafts this winter so let me know if you want Lily art!!! 

Wow, I just wrote a novel didn't I?   Karen, we are planning a trip to Augusta when the leaves start changing so I will let you know when we are coming so you can check out Miss Lily!  We are heading up to Cincinnati for a few days in a couple of weeks so I am hoping we can check out the Newport Aquarium there, it is supposed to be nice and of course we will shop I am quite sure!


HUGS to all! 


September 17- Well, it has been day 3 of preschool and so far so good!  Today was a bit rougher than Monday but only because she didn't feel 100%, was having some stomach issues but the second half of preschool went fine (she slept through the first half!!!  Even sitting STRAIGHT UP).  Each day we have been taking time and doing a different activity, some days she is ok with it and other days she doesn't want to...but we are working on it. 

Haven't really done much this week, we have done some crafts and such, played on the computer, danced and all those sorts of things.  We did go shopping a couple of times but nothing much really.  She is doing fine and feels good.  She is so funny!

Oh one big thing, I have been working on getting her more upright in her chair each day.  So far she averages between 2-3 hours sitting straight UP in her chair, it is so amazing to look at her and she does amazingly well!  For those who don't know why this is such a huge deal with me here it is.  With SMA type 1 they lose their swallow as well as being compromised respiratory so sitting up puts a strain on her , she has to fight gravity a little more (she uses her diaphram more than we do so when she is upright she has get it to go up and down...does that make sense where as when she is laying on her back or sides...flat....she doesn't have to fight gravity as much at all), plus with not being able to swallow she has to figure out a way to get the 'spit' or secretions out or else they will pool up in the back of her throat or even worse she can aspirate into her lungs because they will just roll down her throat.  Anyway, it takes even more work to do all those things when she is sitting up so it is such a huge deal to me when she is upright and doing well with it.  Actually, she has always been a bit stronger respiratory wise and so I didn't think she would have the trouble with her respiratory but I did think the swallowing would be a big issue but she seems to have worked all that out!  She sits really upright and she can spit out the front of her mouth and she does fine with it, actually she blows bubbles upon bubbles out the front of her mouth.  She loves getting upright.....sooooooooo.....

She now has a Powerchair Evaluation coming up!  YEAH!  She is doing so well with being upright I think she is ready to begin the process of getting a powerchair.  How exciting is that???  She will be able to be mobile and who knows how much that will movtivate her with things!   Talking maybe???  Hmmmm, I think she can do it she just has to be motivated to do it!  Our appointment is November the 1st, that was the first available so we took it and it is early in the morning (ugggg).  It is at Cincinnati Childrens Hospital so we will be spending the night before in Northern Kentucky!  I hate having to go in November, expecially to the hospital BUT we will take the risk and hopefully we can be cautious and not be around anyone sick.  They don't do it like right around where there are sick kids, we will just have to be very careful.

Hmmmm, anything else new and exciting?  I am working on making Lily make choices.  She has started picking out her clothes in the morning by using her clock communicator (it is a square piece of plexiglass that has a dial on it and she can operate it by clicking her switch and making the dial stop on what she wants) and that is going so so, she just needs to start doing things that 3 year olds do so we are working on it.

Ok....I gotta get to bed!  I am leaving you with a picture of Lily's first homework assignment for school we had to work on this past weekend.  I am going to get some pictures into Laura to update her picture pages again, I have tons of them!  Oh and Karen, if you are reading this we will be making a trip to Augusta in October when the leaves start changing and such so I will let you know when that will be too so we can catch up with you all.  HUGS to all!

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September 13-  I know you all have been waiting with bated breath to find out about how preschool has gone....you will only have to wait a few minutes but first I have something I need to jot down before I forget my train of thought.

This journal has become a fun way for me to keep up with what is on my mind as well as what is going on with Lily.  I look forward to making the entries because I know I will look back one day and be able to remember little things that has gone on in our lives as Lily grows older.

I have to tell you all about a conversation tonight with a dear friend of mine.  We were talking about different things about our children (she has a son with SMA type 1 as well) and I was asking her about Lily and her stander (Lily hates the stander, HATES it).  This woman is a PTA (Physical Therapist Assistant) and was asking her opinion of using a stander for Lily.   She gave me her professional opinion about how important it is and such then she gave her parent view of it as well and it really got me to thinking.  She said something about since our children will not be able to stand or walk there really is no use in it, and I agreed.  I hate making Lily do something that she hates....but tonight as I was thinking on our conversation and was actually moving the stander out of its place to put something else there I was suddenly struck by what I was doing.   During my last several years of having SMA in my life I have gone through different emotions.  With Nathan it was final, he can't come back to me no matter how much I want him to.  Then with Lily there was the heartbreak, then came the hope (for a cure), then we settled into our 'comfort zone'.  As I sat thinking I remembered the early years when I did have hope for a cure and I thought where did I lose that hope?   Not that I don't want that for Lily but it was sorta replaced with a 'this is the way it is' sort of attitude.  Hmmmm, why would I be doing the things I am doing for Lily IF I didn't have the hope somewhere in the back of my mind?  Yes, I want a cure for my daughter NOT because it would make my life easier....I HATE SMA yes but it has become such a part of my life, I DO want a cure for Lily...and I refuse to give up on that hope.  I want to see my daughter walk, I want to see my daughter stand....why?   Because of that HOPE that God speaks about in the Bible.  I will admit I am not the 'perfect Christian', far from it but I know HE is still God and I can remember in the beginning God gave me that hope, inside of me.  It may not happen overnight but what else do I have to hold onto?  All that I do, I do for my daughter, she is the reason for the happiness and joy in my life.....AND she is my reason for HOPE!   Anyway....thought I would share that and let you ALL know that I have NOT given that hope up, it is still alive but sometimes it gets buried in all the day to day things in life but it is still there! 

Ok...now onto the whole rest of our life thing!  Lily started Preschool on Friday, it was a HUGE flop!  I was so stressed out!!  They came at 11:45am, we got Lily situated in the play room on her swing while they started off the day with the class singing to her (they brought a switch adapted thing that she could click her switch and it would sing for her), it was so cute!   anyway it was her teacher Miss Teresa, Miss Marlyn, and preschool helped (who's name escapes me right now).  Anyway, after the singing they start right into trying to get her to make some choices....of course my daughter being the bullhead that she is shuts down :), she totally zones out, cries, then promply starts to fall asleep!   Grrrrr!  How embarassing!  Anyway, we get her woke up and bring her into the kitchen and get her upright in her seat.  Ok, she is hanging on but barely!   She would NOT cooperate with anything, she would cry, close her eyes and shut down.   She DID enjoy using the glue stick but other than that she wasn't having it.   I thought I was going to cry!!!!  Anyway, they left and I got her settled down then we went shopping!  LOL!  Nothing that a quick trip to Target won't fix huh?

Ok...so over the weekend I worked some with her...so today was day number 2 of Preschool.  She will have preschool every Monday and Friday.  Ok...today was MUCH better.  I guess we were better prepared for it all.  She started off in the playroom again but wanted to zone out again so off to the kitchen we go and I get her settled in her seat with her table (by the way she is setting totally UPRIGHT in her seat and LOVES it) and they start with her coloring.  Totally does good at it, she was picking out the colors she wanted and making choices, it went very well today and I was happy and proud.  Now I feel better, Lily will do fine she will just have her moments like any 3 year old does!

So, they are coming like I said on Monday and Friday at 11:45am and they only stay for an hour.  I really like her teacher, she is very sweet and nice.  Really her whole team seems to be great and I think we will have a fun and GREAT school year!  I am going to work with her everyday for like an hour each day to so she can have a chance to get used to doing things other than watching her beloved video.  Actually tonight we started on a book for her called "All about Me" and each day we are going to add something in it that she likes to do and when we are done we want to share it with her Preschool class at the actual school (yes, she has a real class at Painted Stone Elementary).  How exciting is that?  I think she is READY to learn, really!  She is just a little pistol and needs to be prodded some in that area.  She is as smart as a whip I already know that (after all she can manipulate me so fast it would make your head spin!!).  She is so funny!  I love her so much!!! 

So that is our big weekend....we did head to the outdoor mall on Saturday evening and stayed until dark walking around and having fun.  Her favorite thing to do (or one of them) is to spin as fast and as hard as you can in her chair...we call it "G-FORCE ACTION COURSE", not sure why but she loves it and just squeals when I ask her if she wants to do it!  She is so funny and so darn CUTE! 

Oh yeah, one more thing...I am going to update the medical journal with this as well but we did head to the doctor today for a check-up before germy season sets in.  My girl is SHORT!!!  I know you all think she is so tall but really she is NOT!  She is only 37 1/2 inches long which puts her in the 25% for height!  My little shrimpo baby!  She is still on the charts for weight too at 27.12 lbs.  The doctor said she looks AMAZING and is so proud of us!   She checked out her teeth said they look GREAT as well, but I am still going to make an appointment with a dentist just to start all that.  I am also going to have her eyes checked just to make sure as well.  But Dr. Canby said she looks great and things are going fine!  YEAH!  Way to go Lily.  We will have to go back next month for the flu shot but they will do it fast and let us get out of there....so I guess we did just fine!

Ok....lastly here is a picture of the pretty frame Lily made on her first day of preschool....she is smiling because she is watching her beloved video of Oswald!!!  Enjoy!

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September 9- It is very late and I need to get to bed but not before I make a little update.  

Tomorrow is a BIG day for Miss Lily, it is actually her FIRST day of preschool.  I can't believe it is here already, really!  It seems like just yesterday that she was just a little thing in Early Intervention.  I know it is not the same as Kindergarten but still, the fact that she has SMA and she is 3 and going to preschool is a HUGE accomplishment HUGE!   When I lost Nathan, my heart was broken then when Lily was diagnosed not having any experience with SMA and a child beating the odds....it is just wild to think we are to this point, wild and amazing to me.  I am so thankful, SO thankful to God for this HUGE milestone.  This is just a wonderful time and I am so honored to be Lily's mother.  She has taught me so much in these last 3 years, things that I could never have learned in my whole life.  Nathan started that 'teaching' and Lily has just continued it in my life.  So many wonderful people have been brought into my life, true friends who have stood beside me through it all.  I know all I have to do is pick up a phone and call one of my friends and they are right there helping me through whatever life has dished out.  It has been an amazing journey and while I hate SMA and that fact it has to be in my life (and of course Lily's life) I am truly amazed at how much this journey has taught me. 

So....HAPPY FIRST DAY OF PRESCHOOL my little princess.  It should be alot of fun!  This is a little girl who is stubborn (no, I do NOT envy her teacher), who is bullheaded, and has so much fight in her it is funny.  She has been so much fun and has added so much to my life.  She is amazing, this little girl is just amazing!  Without saying a word she can get her needs met and it is almost like we just know each other so well.  She is spoiled, pampered, and 100% totally loved.  :-)  I love that little girl!  Life is good, life is fun!

Thank you all for being there every step of the way!  Hugs to all!  I will update tomorrow about how our first day of school goes!  I told her IF she behaved (which of course she will right???) we would head out and do something FUN in the afternoon (probably shopping at the outdoor mall, the Summit).  It is supposed to be beautiful tomorrow so we will have just a fun filled afternoon of course.

September 4-I know it has been a bit of time since updating, I guess you could say I have been exhausted for the past few weeks since coming home from Greenville.  I don't know why but it has just been hard to get back to normal, I have been so tired!  Anyway, I am coming out of it so here I am!

We had such a wonderful time and I know I haven't even said what we did.  It was a BEAUTIFUL town to visit, we stayed in the downtown Westin-Poinsette Hotel right in downtown Greenville, it is a beautiful hotel, a 4 star hotel probably the nicest hotel I have EVER been in!  It was wonderful to have my parents there and getting to spend time with them as well as so many of my friends as well.  Also Travis and Dena went as well and they had a great time as well, it was a great family vacation that is for sure.  Greenville is beautiful, the downtown area is so nice, the sidewalks are wide, there are tons of shops to go in and out of, lots of places to eat.  We were able to walk out of the hotel and be right in the downtown area where we could walk up and down beautiful tree lined streets.  There were no curbs to go over and everything was very accessible.  Anyway, we did so many wonderful things, there are TONS of pictures and I encourage you go and check them out at www.smasupport.com and you will see a link on the front of the home page, there are 4 pages and it has tons of pictures to look at.  It was a time to spend with my friends, and we had a great time.  I hope you enjoy looking at them there are TONS of Lily.  She had an awesome time, in fact I don't think she watched more than 2 video's the whole time, from the time she got up and dressed we were out and about running around with friends, or going around with Noni and Pappy.   The day after we got there Laura Stants who runs SMA Support was taking people out on Airplane rides, she is a pilot and had her plane there.  We headed out to the Airport and up we went.  Noni sat in the front BY the controls with Laura and Lily and I rode in the back, she LOVED it.  It was quite bumpy and she loved it being so rough.  It was beautiful and Lily smiled the WHOLE time in the plane.  We had a beautiful Candlelighting ceremony at the Peace Center in downtown Greenville just a few blocks from the hotel so we were able to walk there.  You can see the pictures on the website as well, there was a balloon send off and many of us sent messages up to the angels in heaven and of course I wrote Nathan a note as well as Travis and Noni.  It was beautiful.  After that Lily went on a carriage ride with her best friend Madison.   On Saturday we walked around outside of course then in the afternoon we headed to the ballroom for a Luncheon (AWESOME FOOD...they had something called Spoon Bread which was OUT OF THIS WORLD) then after that was finished they had a DJ and we had LOTS of dancing.   They had a balloon guy there who was AMAZING with what he could make.  We just hung around with everyone talking and catching up and letting the kids check each other out.  On Sunday Lily and I headed to the Greenville Zoo with several families and had a great time there too.  I could go on and on but we had such a GREAT time and again CHECK OUT THE PICTURES AT www.smasupport.com.

We haven't really done anything to exciting since coming back, we have had a few appointments gearing up for germy season to get them over and done with.  Lily starts school on Friday of this week *sniff, sniff* and so her teachers will be here.  It is quite exciting I guess!  Here she is 3 going to school....WAY to young but I think it will be good for her to have someone else in  house this winter doing things with her besides me. 

We did snuggle for a while on the couch tonight before bed watching the MDA Telethon, I always end up crying so much during the telethon.  While MDA doesn't spend much on SMA, they still do MUCH for all Neuromuscular Diseases so I hope you all get to check out some of that.  I am debating taking Lily over to Indiana tomorrow to join our local broadcast of the telethon, I guess we will see.  It is at Caesars Indiana Casino this year so who knows if we will go or not. 

G'nite all!


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