*Lily's July 2005*


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July 28

Wow, can you believe the difference in the weather?  The cooler weather is a much needed break wouldn't you say?

Nothing much has been going on in our neck of the woods.  We did get some special vistors on Tuesday, thanks Debbie and Linda for stopping by and seeing Lily.  We enjoyed seeing you and I think Lily enjoyed showing off in her powerchair for you guys.  She is doing so well with it and it is exciting to see her with a little bit of freedom and independence.

On Wednesday we headed off to Target to do some much needed shopping (we are having withdrawls!) then over to the grocery; which Lily hates, to get some groceries.  Lily loved heading into Target, it has been a while since we did that since the heat has hit so it was fun to get out and about again.  We were going to head to the mall tomorrow with the powerchair but the van has to go into the shop, we have some tire issues on one of the tires and I can't drive it until it is fixed SO we will be home tomorrow :(.  Hopefully we can get it fixed tomorrow and head out on Saturday but if not....we will be homebound until next week.

I do have to say this (and thanks Debbie and Linda for noticing), I think Lily is slowly breaking out of her shell somewhat.  I have been spending alot of time on her level talking to her and doing various things and I think it is working.  I don't really talk much about it but for so long Lily seems to be a little unresponsive to much other than her video's and I have been worried for a while now.  I know she is smart (I mean she has every single video memorized) but I just have never seemed to be able to break through to her.   She always seemed to ignore me, avoid looking at me (and others), and alot of times just wouldn't respond and it has always bothered me but of course I love her no matter what.  Anyway, I have been praying about it and her of course and slowly she is coming out of it.  She is now looking more at me and paying attention to more things around her.  We love to lay on the bed face to face and roll around and play, it has been so much fun and even more fun to watch her respond to me.  I have been working with her to say "uh-huh" for yes and "uh-uh" for no and while she doesn't have it just yet she is working on it and is really watching and listening to me.   I know she can talk if she really wants to and for the first time she is really watching me and my lip movements, facial expressions, etc.  I continue to pray for that 'break through' with her on so many things.  I am excited about this, really excited!  It is so hard for her I am sure, most kids learn by playing and things like that and she can't do it, she has never been interested in toys even with me helping her play with them so I am sure she is behind on some things NOT because she isn't smart enough or has a mental problem but because she just hasn't had a chance to explore her world.  We are working on that and having fun doing it.  I will keep you guys posted on our progress.

I do want to add as well...I am not trying to say anything bad about Lily and the only reason I have never mentioned anything quite like this is because what do you say?  I love my daughter no matter what and I finally had to just let it go and love her no matter what and quit putting pressure on her with things, I tend to be a little over-bearing...or whatever.   I am used to doing things for her and being in control and I have just had to learn to lay back and let her lead in some things and quit putting pressure on her or myself....God is good and I trust Him to direct me on what to do for Lily.  I know he has a greater plan for her life and I am excited about it as always and so many wonderful things are going on the world of SMA with treatments right around the corner and followed by a CURE!  It is on the horizon, it really is!  So many wonderful things are going on (to read about some of them go to www.smafoundation.com), so many wonderful things are going on.  I am proud of Lily and the progress that she has made and continues to make and I am so proud of how healthy and happy she is.   She has always been happy and likes what she likes (video's) and it is alot of fun to watch her growing up and little by little coming out of her shell.  Life is good!   Thank God!!!!

Ok, I have rambled on and on now......hugs to all and as always, thank you for checking up on us.

Before I forget the "Loyal to Lily" fundraiser will be held on October 8th this year once again on the River at Richard and Debbie Brock's.  This will be the 3rd annual and as always I am so thankful to have so many wonderful people who love Lily.  I hope many of you will be able to join us again for a fun filled night dedicated to a special and wonderful little girl.  I am hoping to get a page up on Lily's Website dedicated to the Loyal to Lily Bash!  Keep checking in for more information as it becomes available!


July 21

It is a little early for me to update but thought I would go ahead and update since I am going to bed early tonight.

We are still having some sleeping issues, she is sleeping fine once she gets to sleep but just sobs unless I am right there rubbing her head, back, etc.  It is cute though and when she finally goes to sleep she is asleep and I can get up but then she tends to wake up again at about 6am and wants me right there.  The bad thing is that she is getting her own BIG girl bed for Christmas, a twin and I am getting my own bed....hopefully it will all work out by then :).

Lily had her pulmonary doctor; Dr. Morton, and it went really well.  Yesterday we had to go to the hospital here in town and had X-rays done and a CBG (Capillary Blood Gas) done for our appointment today, it went just fine and everyone was super nice at Jewish Hospital here in town.  That is where both Lily and Nathan were born.  Anyway, the Pulmo visit was great today, they were running behind like they always are so I took Lily's Portable DVD player in with us so she had something to do in the waiting room and back in the exam rooms too while waiting for the doctor.  We took her powerchair instead of her stroller, I was nervous BUT she did GREAT!  She sat there like a Princess in her Powerchair in the waiting room, I can't believe how big she looks when she is in it!  Anyway, Dr. Morton was SO impressed at how great she is doing and how GREAT she looks.  Everything is just fine, lungs are good, BP is good, weight is good, so she is GREAT!  He was so pleasantly surprised at how great she is doing and of course that puts a HUGE smile on My face!  He also said she is the BEST looking SMA child he has seen and dealt with....ahhhhhh....I am so proud of my BABY GIRL or should I say BIG GIRL?  It was a good visit:).

After the appointment was over with I let her drive around and we went over the Skywalk connecting the building to the Childrens Hospital and she was doing so great then all of a sudden she decided to turn and SMASH right into the wall, she took a chunk out of the wall!   Good thing the powerchair is so steady :) because she has several nicks around the base of it and now there is a HUGE white patch where she took the wall :).  Bless her heart it didn't even scare her and she thought it was funny (I didn't!).  Then we got stuck in the door on the way out (I was driving) and a nice guy had to help us out the door.  Hmmm, wonder if I could use situations like that to MEET a nice guy?   Ahem, back to Lily....anyway, we got loaded up and headed home.  I am proud of my girl, she is doing so well and it is exciting!  Everytime we are over there I want to take Lily up to the doctor who was over her in PICU who wanted us to let her go when we were dealing with the severe reflux before she was a year old and let her see what all we would be missing.  I am always upset and angry when I think about that time with the doctor thinking I was a nutcase and that I wanted to extend my daughters life....the speeches about quality of life and all that &*&^ just makes me mad.  Look at how AWSOME my daughter is and what a great life she has.  Sure it isn't always easy and I am sure there will be issues to deal with but life is life is life....and I know Lily has a good life. 

Ok..I have rambled on long enough now...gotta go get my Princess ready and in the bed.  Hugs to all!


July 17

Happy Birthday to my sweet and precious son Nathan who is 7 today!  I can only imagine how wonderful it must be to celebrate such a special day in Heaven.  I hope you eat lots of cake and ice cream and have a wonderful time running around with all the other special angels who have become your friends and being snuggled and kisses by Granny Bars who loved you sooooooo much on this earth, by Be-Paw who loved your mommy so much and I know loves you so much as well, and by PaPaw who loved your mommy so much too.  What a special little boy you are and I couldn't love you any more than I do.

Seven years ago one of the sweetest most precious of little boys came into my life and his stay on this earth was short but there was more love packed into those almost 4 months to last an entire lifetime.  I miss my Nathan so much and I always will.  Time has moved on, the grief has certainly lessened and again I have another little sweet angel to love but none of that takes away the love and joy my Nathan brought to me that day.

I always wanted to be a mommy and when I found out I was pregnant I went through emotions I never knew I could have gone through, fear turned to joy and excitement knowing my life was going to be changed forever.  The day I welcomed my little bundle of joy into my arms my life certainly changed, I became a mother.

Nathan was as sweet as a baby could be, so quiet and so content and he loved nothing more than just to be with me.  We would snuggle together every single moment we could and while other people told me I was spoiling him by holding him to much I went with my gut feeling and continued to hold him.  We were hardly seperated other than when I went to work, we slept together snuggled close to each other so I could listen to him breath.  Those are moments that I will always treasure and I am so glad I followed my mommy instinct and loved him as much as I could. 

While today will always be a mix of many different emotions, alot of joy, a little sadness, and a little grief JOY is the main emotion, JOY that I held my first angel in my arms, memories of us dancing, laughing, snuggling, and just being together are what has remained the strongest memories in my mind.  Nathan is my boy and I love him.

So, Happy Birthday to my son, my first born, my heart, and my life.  While you celebrate in Heaven know I will be celebrating and loving you from Earth and am honored to be your mother.  I am so happy God selected me to be your mother and even though my heart was broken when you left, I would not trade the moments of joy I had with you.  I had to let you go but I know we will be together again someday.  I love you so much Natie-bug and miss you so much.  Thank you for watching over your sister from Heaven and I know you are as proud of her as can be, she will always know who you are and how much you touched my life and made me the person I am today.  Thank you Natie.....hugs and kisses to Heaven (and be on the lookout for the balloons Lily and I will be sending your way today).

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July 15

Better sleep, much better sleep.  Don't know what was up with the girl but she is doing better, still crying when I put her in bed (I suspect she doesn't want to go to bed) but she has been going right to bed.

On Thursday we headed off to the mall, we had to pick up her other pair of glasses that were in so I decided that maybe it was time for another powerchair outting so off we went.  She really did pretty good but she was scared, poor thing, and we took turns driving.  I think I need to get her out more in the chair to get her comfortable so I think we will do it maybe once a week or so at the mall that isn't quite so busy to get her used to it.   She lasted about an hour and a half before she couldn't take it anymore but she did a good job.

She has been a little more clingy than usual but that is fine, it is nice to just spend time with her snuggling, it has been an icky weather week with some much needed rain (NOT ENOUGH) so we have enjoyed just laying around doing nothing, together.

In a couple of days it is Nathan's birthday which is always a little more of a depressed time thinking about Nathan and wondering what he would be like right now.  Nathan would have been 7, a big boy and I am quite sure a sweet little guy.  I thank God I have Lily for my sanity :), she keeps me hopping and doesn't leave me much time to be down and depressed.   I am sure I will write more about Nathan on Sunday and what a joy he was and still is to me. 

Lily is finally branching out a little on her movies, right now Blues Clues is a big hit with her and she is even watching NEW one's that she has never seen which is HUGE around here!  Lily HATES change and ONLY likes the things she has memorized a million times over, she HATES Dora and pretty much ONLY likes Oswald and Rolie Polie Olie but thank goodness she is watching something different, even if it is Blues Clues.

My friend Amy who is Colby's mom (he has SMA type 1 and lives in Louisville) was talking today about doing a Wish Trip and wondered why we haven't done that.  I keep saying maybe next year, maybe next year and I said it again today.  I really want to take Lily to Disney World BUT I want her to LIKE Disney stuff (not just Rolie Polie Olie) like the Princess movies and stuff like that before we go and do a trip like that.  I keep hoping that one day it will click with her and she will enjoy longer Disney movies and stuff like that and that is when we will go to Disney World.  It would be exciting and I am sure she would have fun whether she likes those movies or not BUT I feel it would be better to wait until she is a little older to go so she can get the whole wonderful sensation out of it.   Maybe next year....she will be 5 and SURELY by then we will be branching out even MORE.

Tomorrow we might head out and do a little bit of shopping.  There are a couple of things Lily needs before our next big vacation to Virgina Beach for the SMA Support Gathering and I might go and get her a few things for it and we both need to get out of the house for a bit and chill out.  I am excited, it is only a little bit over a month away and we can relax with friends and of course other kids with SMA which is always fun.  I have never been to Virgina Beach before and I have heard it is pretty.  Fun stuff! 

Time to hit the bed! 


July 13

Well, we should be exhausted!  Lily is being such a little snot about going to sleep right now, I don't know what is up with that but for the past few nights when I put her in bed to go to sleep she cries and cries.  Last night no matter what I did she would NOT quit crying so I let her watch part of a movie and when I took it out and turned it off she again started crying, bless her heart I had to lay there with her until she finally fell asleep, then tonight we went through the same thing minus the movie (don't want her to get into THAT habit).  She has been a little more clingy, especially at night.  She isn't usually like this but for the past few night she has been.  Hopefully it passes quickly! 

Can't believe it is RAINING!  Wow, it has been so long it has been nice to have a few lazy days around here.  Tonight Lily was back in her powerchair and doing GREAT, she hasn't been able to sit up in it since she was going through the secretion issue but tonight she sat in it for almost 2 hours straight and loving it.  We headed outside between rain showers and she drove up and down the driveway but she couldn't get out in the grass because it was wet (she was annoyed with me for that one) but she certainly enjoyed it.  She did awsome and when it quits raining I think we are going to venture out for a bit in the chair at the mall and see how she does.

Nothing else is going on around here.  Hope everyone is having a good week!


July 10

Thanks for all the complements for the Princess in her glasses, she does look pretty cute in them doesn't she?

We headed up to Uncle Danny's on Saturday for the Pool Party and we had a GREAT time and a GREAT day for it as well.  Lily has been having issues for the last couple of weeks dealing with extra secretions and even being constipated, I can't figure out what is going on with it at all, no changed in her diet, I thought maybe it was some allergies but I put her on Claritan but that really wasn't helping either.  Friday she was having some major issues with getting chokey on me and so I took her temperature and she was running a low grade fever.  She seems to perk up when I give her motrin/tylenol so I am thinking maybe it is her molars giving her some trouble (she has most of her teeth BUT she is missing her molars on the left side of her mouth, she only has 2).  Anyway, it made me nervous BUT I decided since she perked up when I gave her the Motrin/tylenol we would go ahead and go to Uncle Danny's, I had the bipap with me and the cough machine if she needed it. 

I am so glad we went on and went because Lily had a WONDERFUL time hanging out in the pool.  I thought maybe she would get scared since she hasn't been in a pool for almost a year but she took right to it like a duck and didn't want to get out for anything.  Danny had the pool nice and warm for her and Lily just squealed and laughed all day in the pool, it was so much fun to watch her.  I had Travis and Donna take some really cute pictures of her in the pool too I will have to share.  It was a good day for sure, being with family is one of my favorite things to do and Donna and Zachary went with us again this year (after all, they are part of our family too :)) and we all were worn out but in a good way.

Lily and I did nothing today, we layed around on the bed, layed around in the playroom, then layed around in the bed again.  Lily seemingly felt better today without needing Motrin or tylenol and didn't run a fever at all which thrilled me too!  She was a very chipper little girl today, she loves it when she gets my undivided attention all day and she certainly got it from me today!  I didn't do the normal cleaning of the house (Sunday is cleaning day and laundry day) so we just played all day long, it was nice.  Hopefully we will get some rain this week with hurricane Dennis so we can have several days of being just out and out lazy, gives me an excuse to NOT get out and snuggle with my beautiful angel girl. 

I am going to try and figure out how to put pictures up myself without having to send them to Laura who is always soooooo busy. 

Hugs to all!  


July 8

I hope everyone had a wonderful 4th of July weekend.  We didn't really do anything at all but snuggle for most of the weekend, but that was fun!

I hope you guys had a chance to check out the home page with all the changes along with things to see :).   I added several things and a few links to other sites to check out so go and check it out! 

Wednesday we headed to Kings Island and we had a ball!  It was so much fun and I am so glad we decided to go.  We left the house around 9:30am and didn't get home until after midnight!  Yikes!  We made it to Kings Island at around 12:30 (we had a major traffic jam on Covington hill that slowed us down) and stayed until 10pm!  Lily had a great time but we were extra tired today.  Lily got to ride several rides but her favorite was the Train and probably second favorite was the Merry go Round.  We met up with the Reeds and the Lockwoods which was alot of fun.  Madison was excited to see Lily again and Lily, Madison, Emma, and Nick all had a ball.  Adventures for Wish Kids did a great job again this year with everything and I know alot of kids had a GREAT time.   First you get in free which is HUGE for the amount of kids that are involved with this (we got 2 tickets, one for Lily and one for myself), then at 2pm you head to the Pavilions where you are fed, free of charge and get to mingle with other families (this is any disabled children/families, not just SMA kids), you get to pick out t-shirts for everyone you came with then you also get $10 in Scooby Bucks to spend at the park.   It is alot of fun running around for the day.  It was HOT but Kings Island is hot even on 70 degree days :) but Lily had 3 fans, one with water in it and the other 2 running all day long (we had to change batteries 2 times), Lily was a trooper and did GREAT.  She was wearing down about 2 hours before we actually left but even then she handled it all like the trooper that she is.  I wasn't able to get as many pictures as I wanted, it is hard to ride the rides and take pictures of us BUT I do have a few I will get up soon.  When we were all done riding it was time to SHOP and spend those Scooby Bucks so we headed to the Nick Shop and low and behold we found T-shirts with Oswald on them AND they were on sale!  Lily was so excited and got 2 of them and today she just HAD to wear one of them.  She was so funny.  She did great on the way home, she was excited to get back to the van and stretch out on her bipap and watch her movies on the way home, never once did she shut her eyes even though it was late but we both slept in this morning.

We were going to head to the fireworks on Monday here in town BUT when I checked out the website for our local news paper we saw that Brian's band was playing there and I certainly didn't want to run into him, Renee, and her kids there so we didn't go and just stayed home and snuggled and watched the Macy's fireworks on TV.

Saturday we head to Uncle Danny's for our family Pool Party of the year.  Donna and Zachary are going again this year with us and Zachary is SO excited.  I plan on getting Lily in the water and letting her move around and 'chill out' in the water.  We always have a good time getting together with everyone.

I hope you all got to check out Lily's picture on the home page in her glasses, she looks so darn cute in them and is doing really well with wearing them too.  We didn't fool with them at Kings Island because we have to adjust them so much in the stroller so she wore her regular shades, looking pretty cool in them too :). 

Our thoughts and prayers go out to everyone effected by the latest Terrorist activites in England tonight, what a shock it was to hear about that this morning and so sad as well.  I will continue to pray for President Bush and his resolve and of course for all the brave men and women fighing this dirty battle over there fighting this.

Also, I will also be praying for those in Florida who will soon be dealing with another Hurricane already.  There are several families I know who live in Florida with their children with SMA.  I can't imagine having to evacuate and get out with all the equiptment and things you would need so they will all be in my thoughts and prayers as well.

On that note.....hugs to all of you who faithfully read our journal and ramblings :), it means so much to us.  Thank you all for taking the time to do it!  G'nite......