*Lily's Nov. '04 Journal*

November 2004


November 26

Sorry there was no update on Thanksgiving. 

I have so much to be thankful for that it would take days and days and days to mention it all!  Let me say just a couple of things I am thankful for.  First, I am thankful to God who has given me the strength to face each day, the faith to belive and hope, and I thank him forever for giving me the gift of 2 beautiful children.  I am blessed indeed.

Next, I am thankful for Nathan.  His life may have been short on this earth but he lives on not only in Heaven but in my heart.  The memories I have with my son are the most sacred and most precious ever made.  He made me a mother, something I wanted to be more than anything from the time I was a small girl.  He is my firstborn, my son, my heart and while I may not have been able to hold him in my arms for very long he no doubt left a huge handprint on my heart.  The love he had for me was amazing at such a young age.   There was nothing more special than snuggling with him in the evening or waking up beside him in the morning.  I love him, I miss him, and I will aways be thankful for   him in my life.

Of course who else would be next?  Lily of course :).  I am so thankful for Lily, my arms ached for her, I wanted a baby.  She came into my life as a little round screaming ball of baby and I knew from the moment I laid eyes on her I loved her and I also knew that she was going to be a fireball and a pistol.  She has been both...in the first few months she gave me more than I had bargained for!  After such a sweet tempered little boy she was such a little stubborn butt!  Having said that, she is my heart and when I used to dream of having a daughter she is the dream that a dreamed!  She is not only beautiful but she has such fight in her and I have learned so much from her.  She is amazing, nothing, and I mean nothing gets her down.  She bosses everyone around but does it in such a way you don't feel like she is in control.  I could not be more proud of this little girl who has been amazing!  I love waking up to her little eyes looking over at me, I love the way her little fingers curl around my hand every night when I lay down beside her, I love the way she giggles when I kiss her on the neck, I love the way she smells, I love the way she makes me feel on top of the world.  I love the way she frustrates me in such a funny way sometimes!  Yes, she is everything to me and I am so happy to have her in my life!  She is so funny and makes me laugh each and everyday.

So those are just a few of the things I am thankful for in my life!  I have tons more but I will leave you with those but let me add one more.  I am thankful for my friends and family who have supported me through all the rough times and rejoiced with me through the happy times.  Alot has happened in a few short years but I am still standing and I thank you for being there for me through it all.

***Lily update, we had to head to the doctor's again today, she started with a fever again last night over at Noni and Pappy's and she just wasn't right all day long.  So this morning I called the doctor and got her in for another strep test.  Yup, she has strep again, it wasn't taken care of by the other antibiotic.  She is doing fine, just extra secretions and fever starting in the afternoon again and some extra 'snot' and stuff in the morning.  She was happy all day long today and when she started her fever I gave her tylenol and will give her tylenol and motrin overnight.  Tomorrow we are celebrating thanksgiving with family and we are still going since she acts fine.  We will be careful but we will  have a good time.****

Hugs to all and I hope you all had a great Holiday!  Gearing up for Christmas now!!! 


November 23

Ok, this is a major gripe session here for right now.  I know it has been a bit since an update, just alot going on right now (nothing bad with Lily, don't worry).

Today was court for Child Support.  I had to be there at 9am so up Lily and I get early (for us) and get ready, I pack the van get her loaded then get to the courthouse (about a half hour away in Henry County), unload all that crap.  The stupid think about the courthouse there is that it is NOT handicapped accessible.  They have a ramp that goes up the side of the building in which you have to ring the bell for someone to come open it up for you.   This  morning a sheriff opened the door looking highly annoyed that he had to be doing something like that.  When I asked where the family courtroom is he points upstairs.  Knowing that it is not accessible I ask him what I am supposed to do and could he let the court know I couldn't get up there with Lily and all her equiptment.   He shrugs and tells me he will do it when he has a chance, he is the only one iin the courthouse right now.  He looks highly annoyed with me as if it is my fault that the stupid courthouse isn't made for handicapped people (which is illegal by the way).   A**hole, as if I am trying to be annoying or anything.  He never goes and tells them so finally I find someone who is going up, I ask them if they are going to family court they said yes and I asked if they could let them know Amy Barnett was downstairs and the reason we can't go up, they did (they were nice and when we were leaving the offered to help me outside and get Lily in the van being as it was pouring down rain).  Thank you Henry County Sheriff Dept for being so concerned and understanding!

Ok, I had a feeling that Brian wouldn't show up.  His sister made SURE he got the notice.  Anyway, someone directs me to a room that is empty and told me they would come down and meet with me.  So we wait and wait, for over an hour, no one comes.  Finally one of the people from the Child Support office comes in and tells me that Brian didn't show, they would issue a Show Cause Order and he would have to appear in court on the 9th.   WHAT???  I didn't even get to meet with the judge (who was busy) and no Warrent or anything for not showing up?  When I get mad I cry, I can't help it, so here I am sitting with the Child Support Attorney so MAD I start crying.  I blew like a firecracker.  They are not going to do anything to Brian at all.  She keeps trying to tell me he has to appear in court on the 9th..BIG DEAL, they will slap him on the wrist and 2-3 months later I will be back in court once again for the same thing.   I am so frustrated with this whole thing.  Not only did I drag my daughter out this morning when she could have been inside on a nasty day but they do nothing, he can just ignore coming to court and they do nothing at all.  What a joke.  I told her what about all this talk about cracking down on dead beat dads and stuff yet Brian is the BIGGEST dead beat dad EVER and he just continues to get away with it.  The last time we went to court the PROMISED me that if he misses ONE child support payment they would lock him up, well, he has missed more than one and they don't do anything at all.   Once again he gets away with it.  Uggggg.

This man is amazing, freakin' amazing.  He has to be the 'luckiest' man I have ever seen.  He marries 3 good women who are excellent mothers, he gets to go and buy thing when he feels like it, he gets away with not paying his child support, he lives with a woman who foots the majority of the bills, he doesn't pay taxes in well over 10 years and nothing happens, he gets away with basically EVERYTHING while his ex-wives get nothing at all.  He works when he wants to, he takes all kinds of days off, yada yada yada....he is such a JERK (and trust me, I want to say MUCH worse than that).

Ok...my venting session is over the moment.  I hate this stuff and I hate to be angry and upset, it ruins my day and I would rather be happy and playing with my daughter.  Brian wears you down until you give up and I am just about there, it is not worth the effort to get a few bucks out of him, the $95 isn't worth the crap I go through to get it (which he NEVER pays anyway), it is annoying and frustrating to say the least. 

Ugggg!  Thanks for listening.

November 18

It is early but it is with a heavy heart that I write this, one of my greatest friends just lost her little boy this morning.  Cole Daniel Webb was the most amazingly strong little boys I had ever come to know and his mother Kristen is one of the strongest most dedicated mother's I have been able to be friends with.  Cole Daniel Webb had SMA type 1 and while Kristen and I took different routes on how to manage this disease I had nothing but respect and admiration in the dedication and love she gave to Cole.  Cole has made it through so many things and fought his way back so many times.  My heart is truly broken for Kristen and I have no words that I can say as to how much they have touched my lives.   I am thankful to know that at this moment Cole is able to breath deeply, move his arms and legs, look around with not only his eyes but with his head at all the beauty heaven has to bestow upon him.  I cannot imagine the joy Cole must have felt to take those tenative first steps then to slowly break that into a run.  To finally meet all those SMA Angels who had gone on before him, they were all waiting for him, to grab his hands and show him the joys that await him.  I also know that for a moment he had to stop, smile down from heaven and send a kiss to his wonderful beautiful mother for all the care and joy she has given him.  Cole is loved beyond belief, and he will always be loved and missed.  My heart is broken for the Webb's but inside I am happy for Cole, he left a place on this earth that can never be filled. 

Please add this family to your prayers, Kristen is a dear friend of mine and I love her so much.  You can visit Cole's Website at www.our-sma-angels.com/cole if you would like to learn more about this precious little boy who brought so much joy.   He was so much like Lily in his stubborness and Kristen and I joked so much that they were cut from the same cloth.  I have no words, I am shocked and heartbroken for Kristen and Dan.  I have been through the empty feeling but it never gets easier when someone else goes through this.  I hate SMA and the devistation that it leaves behind for families.  I have been able to accept it in my life and learn to live 'around' SMA but when it comes to someone I am so close to losing a child, it reminds me of how much I hate this disease.

This is one of my favorite pictures of Cole....

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November 17

Hey guys!  Just a little update for tonight.  Lily is doing fine and dandy, over her strep (and me too!) and back to being the loving, beautiful little princess of the world.  She has once again been out and about, yesterday to Target and today to the mall with Noni and myself.  We had a great time and Lily was in pure heaven for sure.  Monday Lily had school and did great, she wasn't able to set up because she was still dealing with extra secretions (and still is) so she had to stay reclined in her chair but still she did great.  I am tired but wanted to update quick on her.

I included an email that I had sent back in May to the chat group with other SMA families that I am in.   A friend on the chat who is doing something (can't disclose that right now) wanted to know if she could use it for something.  She had saved this email I had sent to the chat so I wanted to post it here for you guys as well.  I was amazed that I wrote it and actually got all teary eyed reading it.  It is so true, and I am deeply blessed in my life.  Others may think that we have such a hard time (and yes, some times it is hard) with all of the stuff we go through but honestly Lily and Nathan have made everything so worth it!  My daughter is so darned amazing and she just keeps me in awe each and everyday and I am so thankful to have her in my life (THANK YOU GOD)!   I love her and Nathan more than I could ever even explain right here right now.   I would gladly do anything for my children (Nathan of course is being taken care of right now....) just like most parents would.  I think you will enjoy the email like I did. 

Hugs to all from Miss Lily and of course myself!

  I wanted to just think aloud so to speak..LOL....I had gone back through so many emails and so many guestbook entries of when Lily was first diagnosed to now and am so amazed at how much I have changed, how much Lily has changed, and how much things have changed.  When I first posted on the guestbook AFTER Nathan had passed away and I had Lily it was such a scary time for me. I couldn't believe that my daughter had SMA as well and I because of SMA Support I had hope, something I didn't have with Nathan. I read back through the rough times of her losing her swallow, where she had to lay flat and I didn't understand why, my first suction with her, getting her started on BiPap, and on and on...it was amazing to read back through all of that! Now the things I take for granted with bipap, feedings, etc. seem so funny and scary at the same time. The horror of KNOWING I could lose her slowly began to fade as time when on and now we just enjoy living each and  everyday. The first year was such a scary time for us and now I am creeping upon 3 years with my precious daughter and time has just flown by. I am so thankful for so many things...but most of all for the time I have been able to spend with my daughter. When I look at her I don't lament the things she can't do..no she can't crawl, walk, hold her head up, etc. BUT I don't see those things..I see such a beautiful wonderful little girl who CAN do many things. I have learned to celebrate things that might seem silly to others but to me they are HUGE! Lily has had alot of "firsts" in her life and while they are not the typical firsts in a childs life, they are still firsts!  The best advice I can give to new parents dealing with a diagnosis of SMA, don't  focus on what your child can't do, instead focus on what they CAN do. I know it is easy to stress out over the fact that your child can't roll over, or can't sit up, or things like that but it is much easier to just enjoy your child each and everyday. Our kids are amazing and the things that bother us really don't bother them nearly as much.  Lily spends her days happy and well stimulated! I have learned not to stress over the silly things like watching to much TV, instead I have learned to be thankful FOR movies and TV to help keep my daughter stimulated apart from me.  I don't know what promted this from me...but having been doing this now for this long, I have learned a few things through the years. I have learned to love BiPap not only because of how good it is for my daughter but because it gives MOMMY a break too (much needed breaks every once in a while), I love the Cough Machine because it helps keep those darn secretions out and cleaned up...and shall I sing the praises of a simple suction machine? I have suctioned in places that would seem unheard of (church for one) and while people may look at me weird at first, a simple explaination is usually all it takes for them to understand.  Thoughout all of this I have been able to touch people in a way I could never have done that without the help of my daughter and angel son. SMA has gotten more out there because of people seeing my daughter. Sure, some people are squeamish still BUT for the most part people have been very accepting of SMA and what my daughter goes through. And the best part is all of YOU wonderful people that I have "met" via the chat or guestbooks...it has been an amazing journey to say the least and I look  forward to MANY more years of sharing stories with each of you!


November 13

Whew, sorry I didn't get a chance to update yesterday but it was a rough day!  I woke up in yesterday morning with a terribly sore throat and feeling horrible.  I felt like it was possible the I had strep throat so I figured then that is what Lily had was strep so I made her an appointment for the doctor.  Noni came over in the morning and took a look at my throat and told me I needed to go to the doctor so we got me into the doctor earlier than Lily so off I go.  He looked at my throat, swabbed it, then came back a few minutes later and told me that yes I had strep...UGGGG!  Not only that but I had an ear infection as well.  By that afternoon I felt HORRIBLE!  I was feverish, alternating between being cold then hot so mom came over and took care of Lily for the afternoon while I slept most of it.  I felt like crap, literally!  Mom stayed until it was time to get Lily to bed, she got her ready coughed her and everything so all I had to do was put her bipap on and get her sleeping.  After she fell asleep back to bed I went.  Oh yeah, Lily didn't have to go to the doctor once I called Dr. Canby and told her I had tested positive for strep she just called in a script for Lily as well so both of us started our Antibiotics yesterday afternoon.  I feel alot better today, I had a slight fever this afternoon but motrin took care of that so I have been able to function today but it was bad yesterday!  Anyway, both of us are on the upswing so I expect us to feel much better tomorrow.  We did have to cancel school again on Friday, I felt bad but since we both were still sick I didn't thing they would want to come over with us.  Anyway, things are fine, Lily is over the worse of it and now with the antibiotics we should be fine, thankfully!

Oh yes, I got my letter in the mail today, Brian and I head back to court again on Tuesday November 23 at 9am. over the whole child support thing.  I hate having to go back to court but something has to be done, he isn't paying and I am just tired of dealing with it all.   Lily deserves the money, it helps to pay for her diapers, clothing, all that stuff so it is necessary.  I can't work so that is the least he can do.  He doesn't help us out at all so he needs to pay (he is such a jerk...).  So anyway, hopefully something can be done about it even if it means throwing him in jail.

Nothing else going on over here, just trying to get us well :)  I didn't get to make it to the cemetary yesterday but I know Nathan doesn't mind because he isn't there, he is in Heaven.  I love him very much and that is all he needs to know.

HUGS to all!


November 11

First let me start off with an update for Miss Lily...as of tonight she has no fever and seemingly feels well.  I am as always amazed at her ablity to fight things off so quickly when so many other kids with SMA get sick and it can drag on and on for them.  I am thankful that she is such a healthy little girl and while I am not 100% sure she is out of the woods just yet I think she is over the worse of it for sure.  I started with a sore throat this afternoon so I take it this is what she has had, but as always she handles things like a little trooper and can smile through so much of it.  Thankfully tonight she full of  'vim and vigor' and bossing me around which I am happy to be doing.  

I want to copy and paste something I wrote a while ago to be posted on a couple of guestbooks....

Dearest Nathan, 6 years ago at this very moment you were on the verge of earning your wings, this was the last time on this earth I was to hold you in my arms, touch your face, smell your skin. Sweetest boy those were the hardest seconds, minutes, and hours I had ever faced...just knowing that on this earth I would never hold your sweet body...the strength you showed letting me have one more night to hold and love you, kiss you, and all those wonderful mommy things means more to me than anything else. I love you sweet boy, I miss you more than I have ever missed anything in my life and I will always and forever miss you. Natie, you live in my heart forever, you are always near because I hold you in my heart each and everyday. In my heart you will never be forgotten and I will always tell everyone what a wonderful and precious gift you are to me. Lily will always know her brother. As I look around the room your face greets me at every turn, those eyes, those lips, that sweet smile means so much to me. I know you are happy, healthy, and whole and while you may not be here with me in person I know you are here too. I miss you more than anything and I love you more than anything...thank you for watching over your sister and myself. I love you sweet boy and I am blowing kisses to Heaven. I will always celebrate your life and all the wonderful things you taught me.....hugs and kisses from your mommy.

This has been a very hard day for 6 years now and while it has gotten easier with time I never forget how much my little boy means to me.  I can only imagine what he must be doing and what he must look like right now.  I miss him so much and honestly not a day goes by that I don't think of him.  I see so much of Nathan in Lily and I am so thankful for that.  I am also thankful for my daughter as well, she has kept me going each and everyday and because of Nathan I have the courage to fight for my daughter.  It is always hard to remember the last few hours I spent with Nathan but also I have learned to look past the heartache of losing him to the joy he has brought into my life.  He was and is my world and because of him I am a mother I can be proud of.  Through him I have become much stronger in my life, after going through losing him nothing in this world is quite so hard.  Thank you Nathan for all you  have taught me!  I love you sweet boy!

Tomorrow will be 6 years since he has been gone, it is hard to believe it has been that long yet in someways it seems like it was only yesterday.  I have learned alot in these last 6 years, lessons many people don't get to learn.  Please remember Nathan not only today but each and everyday.  I celebrate his life not his death, he was such a joy and while it brought much heartbreak and ache I wouldn't trade those almost 4 months for anything in this world.  The joy he brought me could never be replaced and while I still mourn for him I am also filled with hope and joy because of him.  Years have made this day easier to bear and while I will always be sad to have lost one of the sweetest gifts in my life, I am also joyful over having been able to hold one of the sweetest gifts in this life as well. 

Lily will always know Nathan, she will always know she has a brother who was so strong, so beautiful, and so sweet and I know she will love him as well.  She doesn't understand at this age but because of him giving me the courage and strength I have been able to fight for her as well.  She carries him in her heart as well and shares his strength that he had on this earth.  Both my children are beautiful, strong, and amazing and I love them both so much!  I am the most blessed mother on the face of this earth to have shared 2 special wonderful lives and I will always be grateful for that!

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Nathan with his mommy at 3 months old....


November 10

Well, it is still up and down here.  Lily slept pretty well, heartrate was still a bit higher than what she normally runs but she didn't wake up crying or anything and slept all night.  She woke up this morning still kinda yucky but happy over all.  She was spitting out globby things from her mouth but still nothing like a cold and no fever this morning.   I wasn't sure what was going on but I know that fevers can go away during the day then in the afternoon and evening come back so I was going to keep a close eye on her.   She really was happy and playful all day long, was playing on her computer and being funny with me.  Well, around 4pm she started getting that flushed look and glassy eyed look going on and she was feeling a little warmer too, so I took her temperature and she was warming up again so by the time we headed into the evening she was fevering again and not feeling well.  Still no signs of colds here but she has something going on.  I am thinking that she may have a sore throat, she was kinda flinching when I was suctioning her out and when I looked at it looked red but it really is hard to tell with her tounge curling up.  I am going to call the doctor tomorrow and probaby take her in for a strep test to make sure it isn't something like that.   If it isn't strep then it is something that needs to run its course, probably viral.  Anyway, thanks for the prayers, she is holding her own of course but we always hate to see our kids sick.

Karen...HUGS to you!   Thanks for the note and I would love to see Gage, mom and dad said Gage is such a cute little guy.  I hope he is doing well, I have been praying for you all and especially Gage. 

Lily is sleeping well right now so I think I am going to head off that way as well.  I will update again tomorrow to let you all know how she is doing.  HUGS!


November 9

Well, it is official, my sweet baby girl is sick.  She woke up this morning way to early at 5:30 crying and I couldn't get her calmed down with anything so finally I had to do something I don't do, I had to put in a movie for her.  I drifted in and out of sleep but I could tell something just wasn't right.  Later on that morning when I took her bipap off her face was very flushed and she felt hot and feverish so I took her temperature and she was running a temp at that time of close to 100 degrees.  Throughout the day she got worse and worse, I gave her tylenol which would bring her fever down but once it started wearing off she started getting more glassy eyed and her temperature began rising again.   She doesn't seem to have alot of extra secretions although what she does have is thicker so I am not sure if it is just a cold or something else.  I will be watching her like a hawk tomorrow and keeping track of her temperature as well.  Before her last dose of Motrin (I give her motrin at night because it doesn't wear off as quickly) she was at 102.3 which is very high for her, she normally runs low on a average basis so I know she is fighing something.  After medication it goes back down to between 98.9 and 100.9.  I can handle a cold, not worried about that but I will admit to being a little more cautious with the fever since she hasn't really had a fever like that at all.   She is sleeping right now, her heartrate is still pretty high (and it has been very high all day long) but she seems to be sleeping ok right now.  I am heading back, she has taken over the bed (I have her thermometer's, face cloths, and all kinds of things all over the bed) so I am going sleep on the floor with a mat so I don't disturb her at all.  

I will be keeping everyone up-to-date with her.  I know we would appriciate prayers from everyone.   Lily is amazing and I know she will do a fine job through this, I am confident I just hate to see her sick at all, it is so much work and it is hard to watch her not feeling well. 

Hugs to all...I will update tomorrow on how she is doing.


November 8

We are back from out little trip and boy did we have fun.  It was a nice break for us, the weather was perfect, during the day it was pretty warm and chilly at night.  I will talk about it in a minute.

First, amongst friends I have to have my little 'gripe session', it has been a while so please enduldge me for a moment and what else could this little gripe session be about other than my ignorant ex-husband!  Blah!  I get home today and start going through my checkbook to balance it, well of course the child-support isn't what it is supposed to be!     Last week he was short almost $80 and this week he was short almost $65, and this doesn't include all the other being shorts since we went to court back in June.  I am so sick of dealing with this!  Tonight I went on and called the Child Support Lawyer (so she gets the message first thing in the morning) and am going to go on and have him locked up.  It doens't really do me any good because with him locked up it keeps him from putting in the hours he needs at work to pay the Child Support but if he isn't going to pay it anyway I would rather him be sitting in jail for a while instead of spending money that Lily rightly deserves.  Over all he is well over $2000 dollars behind and it is just so stupid that we have to go through this all the time.   I wish I didn't have to worry about it but we depend on that money each and every week.  Keep in mind that for the last 2 weeks he is close to $145 behind, that is 9 boxes of diapers to put it in perspective.  It is just so annoying....grrrrrr!   Not only does he not help out physically but he certainly doesn't do much financially.  OK enough griping right???  Now onto the fun stuff :)

Well, our trip down to Gatlinburg was interesting to say the least, we left pretty much on scheduel at 8:30am taking Obie out to the wonderful woman who keeps him when we are gone (thank you Karen), then on the road we go.  We had a nice pretty uneventful trip until we crossed into Tenessee, we didn't get to far into the state until we were stopped by literally bumper to bumper traffic, the first half of the traffic we were pretty much at a stand still.   Lily was annoyed to say the least, she rides with her bipap on so I don't have to worry about suctioning her out and such but she likes to keep moving and not be stopped.   Well, she fussed and kept yelling "MOM" at me, I knew she wanted the bipap off (after all she had been wearing it all night long, then a short break in the morning and back on) so finally after sitting for a about a half an hour I pulled over into the emergency lane and took the bipap off, coughed her (I keep the cough machine in the van ready to go), changed her diaper then got her situated *aak, horror of horror* in the front seat.  I know that isn't the safest place but she was fussing and was tired of being on her bipap and stuck in the back by herself.  By putting her in the front seat I was able to suction her and play with her while we sat in traffic.  Well, we sat in the traffic, inching along for a little over and hour and a half.  Finally we got past the hold up (a wreck) and were on the move again.  Lily was till up front :(.  We finally were at our exit, we get off and are moving along when we hit Sevierville....again traffic.  Bumper to bumper all the way through Sevierville then through Pigeon Forge.  We finally got through there then hit Gatlinburg with the traffic.  Finally we arrived, way later than we intended but we were there.  We rested up a bit then we got dressed in our warm dud's and headed to downtown Gatlinburg with Noni and Pappy.  It was so beautiful with all the lights, Winterfest was going on, and Lily's eyes were darting all over.  She eventually fell asleep since she refused to take a nap in the van (arggg....she is so rotten about things like that) so we just walked around for a while shopping and such.  It was beautiful but very cold.   We finally headed back to the hotel for some nice warm sleep.  Next day we got up and started getting ready and again downtown to Gatlinburg we went again.  It was a much warmer day, close to 70 and just beautiful!  We ate lunch at Hard Rock Cafe then walked all over town doing lots of shopping and looking around.  Lily loved it so much, she chatted away and her eyes were just looking all over the place.  Again we headed back to the room and rested up before heading out again after dark to see the lights.  We spent much of Sunday night walking around and checking out the lights again (and shopping of course) and Lily just loved loved loved it.  I was a little slicker...during our time back at the hotel in the afternoon I took a nap while Lily laid beside me watching her movie.  When I got up I knew that once we headed downtown that night she would go right to sleep so I went on and loaded her up and took her for a walk outside around the hotel.  There was a beautiful creek so we took a walk beside that doing the "space mountain" thing down the hills (I run behind the stroller while she flies down the hills...Madison Reed showed us how to do that and so now we do it too) then we just walked around looking at the beautiful trees and such, she fell asleep during that time so she was nice and rested up for the nighttime walk into Galtlinburg.  We had such a great time and I am so happy that we were able to go (THANKS Noni and Pappy for a fun weekend!!!).  It was worth the trouble to get there.  I love spending time with Lily like that with nothing pressing me like laundry or dishes etc.  It was just a fun time for both of us.  We left today early afternoon and got home this evening.   It is always nice to come back home of course.  Now Obie is back snoring on the couch, Lily is back sleeping on her bipap, and I am heading that way in a few minutes.

I love weekends like this, it gives me a break and allows me to just enjoy being around my daughter.   Pappy loved spending the time pushing her around in the stroller and I enjoyed watching them together.  It was peaceful, no phones in the rooms and Lily of course controlling the TV I was able to just lay beside her and watch her smile and laugh.   Relaxing......then I get to come home and deal with Brian but at least I had the weekend to rest up right???  I just love my sweet girl who was so good all weekend long, she loves to go and go and go so much! 

Hugs to all!!!


November 5

Gee whiz!  Where does the time go, it seems like I can never keep up.  So many things going on I am not sure where to begin but I will do it I am quite sure.  Lets see, fall break was over for Miss Lily and so it was back to school again, which has been going fine.   She needs to learn to pay better attention but of course she is only 3 but for the most part she really does enjoy it alot.  She is doing well and really enjoys her teachers too.

We celebrated Halloween on the 30th this year instead of the 31st, the Thursday before Halloween Donna, Zachary, Lily and myself went to the Louisville Zoo for their Trick or Treating thing.   Lily fell asleep as soon as we got out of the van and into her stroller but it was so crowded that we were not to far into the zoo before she woke up, throwing her temper tandrums as always.  I don't know if she was scared because it was dark out or what but she cried and cried!  Finally I had to just pick her up and carry her through the zoo while Donna pushed the stroller.  She didn't seem to mind it while I was holding her but if I laid her down even just to suction she would start crying again.  In a way I think it is the stroller, it sits so low to the ground that it is hard for her to see what is going on, but anyway I ended carrying her for practically the whole way!   Ugggg, she is heavy and hard on my back but we did it and she seemed to enjoy it that way.  On Halloween we went over to Noni and Pappy's for trick or treating with Zachary and Donna as well.  Lily really liked that and got into it too!  She looked so cute, she was a cheerleader (was going to be a princess but the dress broke her out) and not only that but a Ohio State Cheerleader (GO BUCKS!).  She enjoyed dressing up and loved watching all the kids.  She loved handing out candy too so it was a nice night.

Monday was her Powerchair appointment at Cincinnati Childrens Hospital and I have to say it was awsome!   We had to get up very early and get on the road and of course I hoped that Lily would sleep the whole way but she seemed just as excited (I had been telling her what she was going to be doing) so by the time we got to the hospital she was already exhausted!   She fell asleep right away but that worked out great because we could sit down with Beth the OT and Jerry the Wheelchair guy and discuss what was important for her to have and what she could do and couldn't do.  By the time we got through with all that she was waking up so we got her set up in a chair (with no power) so they could take measurements and such.  She hated that, we had to finally get her DVD player out to entertain her while we figured out what headrests and such she could work with.   Finally we got all that straight and then Beth wanted to see how well she did driving.  Lily had been crying up a storm (just being uncomfortable).  We sat her up in a chair with NO support whatsoever (no chest harness, no head support, nothing) for a trial, I had to get behind her and hold her head up for her, but Beth got the joystick situated for her and showed her what to do then Lily just took over!  She started right away just going around and around in circles (with me following behind her holding her head) and she was loving it!  The look on her face was priceless (yes, I leaned over so I could see  her face), it was pure joy that she was moving and doing it herself, no crying or anything!  So we gave her a goal to go to her DVD player and away she went.  She really did a great job and Beth thinks she will be a great driver and is certainly ready for it.  I was so proud of her!  She started crying when we took her out of it.  She did such a great job in a chair that was hard for her to sit up in (no support), no headrest just mommy trying to hold it up, and a joystick that was not suited for her (not sensitive enough) yet she did such a great job and loved it!  

Anyway, her chair is in the process now!  yeah!  First battle is insurance once they get the estimate and that is the beginning so it will be a while before she gets it but how exciting is that for her to be able to do it all on her own!  Not only that but she will have such a cute chair, the base is purple and the seat itself will be black with her name embroidered into it.  Now I have to adapt my van (if it will work with a lift) or get another one :( with a ramp so we can get her in and out with the chair.  No way can I lift it, it is well over 100 lbs.  It is exciting!  I really didn't know if we would ever get to this point but here it is and I couldn't be happier for her, she just did so wonderful and was so happy driving it herself!  Now I will be chasing my 3 year old the way I am supposed to be doing!!!!

Other than that nothing much going on, tomorrow we are heading out and meeting my parents in Gatlinburg for the weekend, so another vacation for my girl.  Noni said it is beautiful there with all the Christmas lights up and all so we are going to have a fun weekend!

Karen~how is Jessica and the baby doing?  I am so sorry we didn't get to catch up while we were in Cincinnati but I forgot to send you my cell number but even then we couldn't have come over anyway, we were so busy with the appointment then we had to get home.  Please give Jessica my love and tell her I am praying for her and the baby.  Tell her to call if she needs anything at all.

Hugs to all! 


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