June 27

Nothing much to report so I will keep this short.  Lily is doing really well with her glasses and I am amazed at how she seems to be amazed at things I guess that she never saw quite clearly before.  She wore them almost all day on Sunday and then today as well, I did give her a few breaks because of how they rest on her nose from laying down the way she is with her head turned to the side but she only had a short break, she certainly doesn't mind them at all and my guess is that she is seeing much better, her eyes are looking everywhere.

We have been staying in, it is to hot to go in and out of the van, we will probably head to the mall later in the week because we can stay in the mall and I don't have to get her in and out of the van BUT for now we are staying cool.  I put her in her stroller this afternoon to walk out and get the mail and she HATED it, she was so hot and wanted to go back in and that was only for a few minutes!  I don't know if we will make the trip next week to Kings Island or not, if it is this hot next week we probably won't be going because it is miserable for her and me too, it is tough to get cooled off in a place that is full of concrete.  I can remember going when I was younger and it didn't matter what temperature it was it was HOT HOT HOT at Kings Island.  I hate to miss it but if we were not able to enjoy it because we are so hot then what would be the sense in going?

I will post a picture soon of Lily in her new specs, she looks awful cute!  Hugs to all!

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June 23

*Add on*

I added some new pictures on Lily's Medical Information Page if you want to check out some of her various machines that she uses along with a preschool section as well explaining the various therapists that come via the preschool and such.  I plan on adding some pictures of the various tools she uses during preschool for communication and choice making etc.   You can see the cough machine, bipap, pulse oximeter, feeding pump, what her g-tube looks like, and her suction machine just for information for any newly diagnosed children/parents. 

It is always important to let families know some of the various machines that have become a fixture in our home and help keep Lily healthy.  It is amazing how quickly the machines take a normal place in your home and how quickly they become an extention of the life of your child.  When we first began getting the equiptment if felt as if life would never be normal again but now I can't imagine life without them.  The very few times that Lily has spent the night away from me at Noni and Pappy's house not listening to the even in and out of the bipap I had such a hard time sleeping, it has become white noise now.   Listening to the gentle rhythem of the feeding pump, pumping the food or the dim light of the pulse oximeter is now background to our lives.  I am so happy and thankful for each of these machines that help to give Lily the quality of life she needs.   It is not extending her life but helping her LIVE her life and live it to the fullest she can.  In the beginning it felt as if I was running a mini-PICU in my bedroom but now, they are fixtures the same as the furniture.  It was so scary in the beginning even looking at a g-tube in my daughters stomach and the first time I had to feed her via the g-tube I was a nervous wreck yet just the morning within a matter of minutes before rushing out the door for her Eye Appointment I changed her g-tube without even thinking twice about it.  How easily we can adjust to a 'new' life is a testament to how God has created us to adjust. 

Anyway, I thought I would let everyone know in case they wanted to check it out.

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June 23

Hey All!

Wondering why I am writing so early right?  Well, Lily had her first eye appointment today and I have to admit all my stressing was for nothing!  Lily was a perfect patient with hardly any fussing at all.  She did a great job with everything, even the eye drops to dialate the eyes, I was impressed.

For her 'lazy eye' we are going to start doing the patch thing, he suggested starting out with just a few hours a week and working up to more and for anyone who doesn't know what I am talking about I put a patch over her good eye to make her other eye have to work, to strengthen the muscles so we will be starting that next week.  I tried it for a little bit today but that didn't work, she didn't like it so I figured I would let her get over the whole thing and start on Monday, a weekend isn't going make a difference anyway.

Lily also has astigmatism (www.allaboutvision.com/conditions/astigmatism.htm) if you want to learn more about it.  She has a prescription for glasses now but the good news is that doesn't have anything to do with the SMA (probably the lazy eye does since she has to lay flat so much and look up with the right eye so much), it is alot of times genetic and it most certainly is in Lily's case.  Brian (ex-husband) has astigmatism along with his sister, his brother, his mother, Adam (Brian's first son), and Joshua (Brian's second son) so she inherited that from Brian (grrrrrrr).  Anyway, I don't think she has it bad but her vision is probably blurry so she is going to get some glasses BUT he said she didn't have to wear them all the time unless she wants to but mainly she will wear them when she is doing school and probably when she is watching TV and playing on the computer.   In other words, she will wear them mainly around the house and unless she wants them she doesn't have to wear them out and about...but we will see how it goes and she may WANT to wear them.  Anyway, I am a little sad she needs glasses especially so early but at the same time if it helps her then I am all for it.  We are going to go to Vision World tomorrow to turn in our script and maybe get 2 pair but I know my daughter will be BEAUTIFUL in glasses, how could she not?

Anyway, over all it was a good eye doctor visit, Dr. Craig was very nice and easy to work with, he made it relaxing for sure.  We will continue to see him and our next appointment will be in the early spring for a check up with him.

One more think, if anyone wants to check out the wedding photo's they are online at www.digiproofs.com and the password is KY6/10/05.   The photographer doesn't have them all up right now and there are only a few of Lily (on page 5 or 6) and you can't make them any bigger than they are which makes it sorta hard to view BUT you can at least see them anyway and see how handsome Travis is and how beautiful Dena is as well.  There are literally tons more to go up so you can check them out for 90 days once he gets them all up.  They were fun to look at again and I can't wait to see more of Lily, Zachary, and Drew. 

Hope everyone is beating the heat, it is AWFUL and I know I HATE HATE HATE to even step outside right now!   It was 96 degrees and going to get hotter so we will be spending LOTS of time in the airconditioning I am sure.  It isn't even to the hottest part of the summer and I am already complaining about it so I am sure this summer isn't going to be one of my favorites on record....I HATE the heat and more than that I hate for Lily to have to be in the heat, her heartrate goes up and I know she is miserable as well.  *Sigh* But there is nothing I can do for that but to keep her inside.

Hugs to all!

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June 22

Hey all! 

Honestly there isn't much to report, Lily is doing well and is so bored!  We haven't been out and about as much as we usually are at this time of year and I think she misses that!   She has been playing in her powerchair, still learning and somedays she does amazing with it then other days she hates it.  We still have issues with the joystick postioning but we will eventually figure it out.

For the past 2 weeks we have been taking daily walks, so I load her up in her beautiful stroller and off we go.  The first few days she thought it was pretty neat but now she is so bored with it and bosses me the entire time we are walking.  One day last week we stopped at the park in Shelbyville, they have a nice walking path the is a mile so I thought we would give it a try, something new for her to look at.  So I get her all settled in her stroller and off we go, first of all this trail is MUCH harder than walking our neighborhood, totally up and down hills for the entire walk but it was fine.  Lily fussed and carryed on for the first mile but was making it so I thought, well we will just go around another time and make it 2 miles so off we go and as soon as she figured out we were going around again the crying started.  I always tell her that unless I see actual tears it isn't that bad so I just ignored her and kept walking...well she of course started forcing the tears out so we got through half of that mile and I had to stop at least 2 times to suction her and by this time she had snot running out of her nose so I said fine, we would head back to the car, as soon as the little 'snot' saw the van in sight the crying stopped and she was as happy as a  clam :).  Go figure!   She hates HATES the daily walks and when it isn't so hot (like it has been up until today) I try and plan them for afternoon so she gets bored and takes a nap, if I go later in the evening (we are not morning people at all so mornings are OUT) she goes to sleep then I am stuck with her not wanting to go to bed when she should be in bed.  She is so darn rotten and SHOULD enjoy the walk, we are spending time together but she isn't having any of it.

We head to the eye doctor on Friday so for any of you who pray, pray that it goes well for Lily.  I hate to think of her being in glasses (not that it is a big deal but with her laying flat it might be hard sometimes and it is something else to have to worry about) but mainly I hate thinking about them dialating her eyes and stuff and her having blurry vision for a while.   Bless her heart, her eyes are her 'thing', if she was verbal (and we are still praying for that one too) she could tell them what she can see and can't see but since she doesn't talk, or at least talk in OUR language, it is tough.  I don't even know what they do in a eye exam to be honest so maybe that is why I am nervous about it but I know it has to be done.

Well, nothing else to report around here.  I hope everyone is having a good week!  Hugs to all!

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June 19

I want to say "Happy Father's Day" to all of the wonderful fathers out there today.  I hope your day is as special you are!

To my very own Dad, Lily's Pappy, I want to wish him an especially special Fathers Day as well.  What can I say about my dad?  I love him so very much, he has been my rock, my hero, my mentor, and so much more his whole life.  A more wonderful father I can never imagine and I can only wish that MORE men were like my very own dad. 

I have been more than blessed with such a strong man in my life.  He has influenced how I have 'turned out' in so many ways, he was there when times were tough as well as when times were good.   He has been so much to me each and every single day.  My dad is amazing, he is a success in everything that he does, a wonderful buisness man, a compassionate caring person, a wonderful dad, a wonderful grandfather, a wonderful friend. 

My dad stepped up when Brian left and has not only been an amazing "Pappy" to my daughter but also a wonderful 'father figure' in her life as well.  He supports us, cares for us, and takes care of us in more ways than just material things.  I know I can always turn to him for anything and he is always there with his ever-present wisdom.  He has been there when I needed to cry or to laugh and he is and will forever be my 'dad' no matter how old I get. 

My dad is my hero in so many ways and has taught me so much through my life and I am deeply grateful to him.   It is because of him (and my mom) that I can be the best parent that I can be and to strive to be an even better parent than I am.  I love him, honestly both of my parents, so much and am grateful for everything they have done in my life.  There have been times I have not made it easy to love me but they were always there, unconditionally loving me through those times as well.

I love you more than those 3 words can ever say Dad.  You mean the world to me and I hope you know that. 

I love you Dad.....

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June 18

Hey guys!  We have recovered from the wedding and have had a very nice, relaxing week this week with nothing much to do other than doing some normal shopping and stuff so I guess things are getting back to normal.

On Friday of this week, the 24th, Lily heads to the eye doctor and I will admit I am a little nervous about that.  She has a 'lazy eye' which is her right eye and for the last few months I have noticed a few times a week her left eye has been blood-shot so I am wondering if she is over straining her eye or not?  Anyway, she goes to the eye doctor and we will see, I know I won't like it if we have to get glasses but then again if she does we will make it work, somehow, we always do.

After that we head to Kings Island on the 6th of July for the Wish Kids Paramounts Kings Island day.  We went last year and it was alot of fun and I am looking forward to it again this year.   I am sure Emma and Nick Lockwood will be there and I know we are meeting Annette and Madison there as well (probaby Aunt Shell too) so it will be fun.  I know Lily had a great time last year riding all the rides and hanging out. 

It is shaping up to be a busy summer again which is always fun!  In August (the 17th I do believe) we will be heading to Virgina Beach for the Second SMA Support Gathering.  It was up in the air for me for a while, I wanted to go but didn't want to have to make the drive either but it might be the last one so I have to go now.  We had such a wonderful time last year in Greenville and it is always nice to get together with friends and other SMA Families, just a nice get away.  We won't be going to the FSMA conference this year so SMA Support will be our only chance to get together with families that are just like us.  It is a bit of a drive but it will be fine, Lily does great riding in the car and enjoys it and I know we will have a good time in Virgina with everyone. 

Lily will also be having the "Loyal to Lily" bash again, 3rd annual!  Wow!  Thanks to Brocks and so many other people who put so much work into it, we have such a great time and I hope to see so many of you guys there!  The whole "gang" (meaning Debbie, Richard, Sherry, Charlie, Linda, Bob...etc.) are so wonderful to us and we love them so much!  We certainly feel special with so many people who love Lily and want the best for her!  Thanks for all the hard work guys and I look forward to it whenever it will be :). 

Well, I need to go and get the princess in the bed....hugs to all!

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June 13

Well, we made it through the Wedding in fine form....but more on that in a moment.

I am having a real issue with the spam on the guestbook on Lily's site.  Tonight I deleted 200 entries from just a little less than a week, it is driving me CRAZY!  So I am I am so sorry if I deleted an entry that anyone made, I don't think I did but if I did accidently delete it I am so sorry.  I don't know why this is going on and Laura is trying to get it fixed somehow but every single our-sma-angels website is getting slammed with the spam so it isn't just mine.  Anyway, thank you all for the birthday wishes and other entries, hopefully I can get around to emailing some of you and thanking you all.

On another note, a dear, wonderful friend of mine named Kim McAdams has started her own Organization called Planet SMA and I would love it if you guys would check out her website.  Her daughter, Skyler, has SMA like Lily and Kim and I have become close friends and talk almost every single day.  You can see Skyler at www.our-sma-angels.com/skylerbingaling or you can go to www.planetsma.com and check out their website and get to Skyler's that way as well.  Anyway, she has opened up a shop at Cafe Press (you will see it on the Planet SMA website) and has designed really cute t-shirts and other odds and ends like mouse pads and tile coasters etc.  One of the places on the Cafe Press is called Forever Friends and she has a whole section on Lily (or SMA Princess as it says on the t-shirts) and it is so CUTE!  I am going to have to buy some for SURE!  There is alot of neat things in the shop and the website just looks awsome so please, go and check it out.

Ahhhh, the wedding.   What can I say?  It was beautiful and I have a new sister-in-law now.   Dena looked like a princess from some sort of fairy-tale, it was a wonderful day.   It started on Thursday with the Rehersal and Dinner, we met at the church at 5pm and practiced, Lily was very good and so excited!  Then out to dinner we went and my goodness it was WONDERFUL.  We ate at Captain's Quarters on the River, it was awsome!   Travis gave a big speech after dinner and it made me cry....Dena gave a speech as well and both of them were just beautiful.  They gave everyone gifts who was in the wedding and then the mothers and fathers (brides mother and mom and dad) recieved beautiful gifts as well.  Dad's was awsome (well, so was mom's and Nan's), it was a watch and you could lift the face of the watch and there was a tiny picture of Travis, Dena, Lily, and myself and it was engraved with "We will love you to Eternity" or something like that.  It was beautiful...and Mom and Nan (Dena's mom) recieved BEAUTIFUL Coo-Coo clocks...very neat. 

We headed home, late and Lily was so darn excited she refused to go to sleep until 1am!  I let her sleep the next morning until 11 then it was a busy day, bathtime, getting her hair blow-dried and then into curlers.  I proceeded in-between those times to get myself ready too ;).  We had to be at the church at 5 pm for pictures and such...so I took Lily's hair out of the curlers around 4pm and OH MY GOSH it was just awful!  Her hair was so curly that it looks crazy!  I ended up having to dampen it then get out the curling iron to fix it but in the end she looked fantastic and beautiful!  Lily was so excited all day long she was just chattering and singing away all day, she was so pumped up!  I tried and tried to get her to take a nap but NO WAY was she doing that.   I knew it would be a long night for her but she would NOT go to sleep so I gave up.   We arrived at the church around 5pm and started with the pictures and such....then everyone started arriving and it was time.  RIGHT before Lily was to be pushed down the isle she fell ASLEEP!  Would NOT wake up for anything!  I had to go in and sit down and wait for Zachary and Drew to push her down the isle and still she did not wake up at all.  She missed the whole ceremony and woke up shortly after the wedding was over.  *sigh*  That is my girl!  I guess it was better than her crying and me having to suction her in the middle of the wedding.  Anyway, it was beautiful and Dena and Travis were glowing!

Then it was onto the party/reception and that was wonderful too!  The food was amazing, the place was beautiful, and everything was great.  Lily was having a GREAT time and we both danced and danced all night long to Dad's band.  Lily loved LOVED loved it!  We didn't get home until after 1am....and my girl was up again at 8:30am thinking it MUST be another big day :).  She has sense recooperated and has gotten her sleep in.

So......we had a wonderful time and just for a teaser....here is ONE picture of Lily in her beautiful dress at the wedding.....I will have to send some more to Laura and get her put them up along with a million others.  I can't WAIT for the professional photo's!

Hugs to all and hope you all are having a GREAT week!

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June 6

We got it, we got it!  The stroller came today and it is so CUTE!  Lily was so excited she could barely stand it so I got it all put together and out we went, for a short bit since it was so HOT outside.  It is such a nice stroller and will fit her for many years to come!   It is such a beautiful color and so girly with flowers (daisy's) and a pretty blue-purple color.  It is very nice and we are taking it out tomorrow while grocery shopping.  We are going to stop by ring-bearer Drew's house tomorrow to make sure he can push it down the isle and if he can't then we will use the Tiger for the Wedding Ceremony and then the new stroller for the reception.

Speaking of that, tick-tock, tick-tock...the countdown is on.  LOL...hopefully it won't be so HOT but I have a feeling it is going to be very hot and I need some suggestions on how to keep Lily cool.  I should have thought about it before now but with the weather being so beautiful up until this week I didn't think about it.  If anyone knows where I can get one of those cool wrap things or something (the thing you dip into water and it stays cool) let me know.  I am thinking if I could stick something cool behind Lily's knees under the dress it would help her not be so hot.  With her 'breathing issues' and such, the humidity will be tough on her for sure but we will make it work.

So...that is it for tonight!  Lily is doing fine, growing like a weed and being a Rotten Princess :).   Hugs to all!

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June 3

Countdown is on, time is ticking, it is almost wedding time!  I think Lily is getting excited too, she is looking forward to wearing her beautiful dress and looking like a Princess.

We didn't get the new stroller today :(, have to admit I was disappointed but we will have it on Monday so we can be excited over the weekend to get it.

Nothing much else is going on over here, Lily is doing well and being busy being bossy as always.  She is down to 2 video's she likes and is going to have to branch out now.  Today she watched some Blues Clues and while she didn't cry she didn't actually like them....but we will work on it.  She likes to stick to what she is familiar with and isn't big on change, bless her heart she is so much like my brother Travis, just bull-headed and strong-willed which has served her well through the years and what has kept her strong....but on the negative side of that is with this strong will comes such a bull-headed little girl ;).  She is funny and certainly keeps me laughing all the time.  The way she can burst into tears at the drop of a hat and know that she is going to get what she wants....arrrrrrg!  Little Miss Rotten butt!

Well, since little Miss Rotten butt is in the bed, sound asleep I should be heading that way now. 

In case I haven't said it enough, thank you all so much for 'tuning in' to read our journal and updates.   It is so nice to know so many people care about Lily and enjoy reading about our lives. 

Hugs to you all!   For some of you, see you next week, a week from tonight at the big shin-dig!