*Lily's May '05 Journal*

May 2005

May 31

I can't believe it is June, well tomorrow is June!  I need to get a space up for June and a few more months too :) so I can keep you up to date with Miss Lily.

Today was our appointment in Cincinnati for her Powerchair again, just a follow up.  Lily did great driving for Miss Beth and actually I think surprised her with how well she is doing.   We brought home a new attachment for her joystick to try and see if it works any better than the one we have.  Also she is going to check into getting another head rest for the powerchair so that we can swap it out.  We will keep the same one we have now but have another one for when she gets tired of setting up and needs to lay back so I can get her head over to the side (hopefully that makes sense), anyway, it will make the chair easier to take out places with us.

Of course Lily did great in the van, as always, she is such a GREAT traveler.  She always has a good time going anyway, the perfect travel companion for me!

I am excited about this too, Lily is getting a NEW stroller and it should be here on Friday!  It is called an Easy S stroller and from what everyone says about it, it is a awsome stroller.   I was actually able to see one in person at last year's FSMA conference and they are so nice, a cadilac of strollers if you ask me.  Lily has outgrown her current stroller and I am having to kinda curl her back up to keep her head from going over the top of the stroller so this one is much bigger and will be able to be used for many years.   The Charity is getting it for Lily and is a wonderful belated birthday present!   I will take some pictures of her in it when we get it.  I am excited about it and keep telling Lily about it too.  It will set her up higher than the Tiger does so she won't be so close to the ground which will be nice. 

Nothing much else is going on, finally got all the birthday toys and things up.  I really do appriciate EVERYTHING that was sent to her and am trying to make it to emailing all of you about it.   Karen...the book was adorable!  I love to read her books with her name in them, it is so cute!  We are working on her learning her name with the letters in it and stuff so that is perfect for that.  Actually she recieved 2 books with her name in them, one is the one Karen sent which is called Blue Kangaroo and the other one is Lily's Purple Plastic Purse which is cute too. 

She has really been getting into the playing thing in the last week or so, she loves getting on the floor in her bean bag chair and playing in her sand (we brought some back from Florida) and also playing with her magna-doodle helping me write things on it.  It is alot of fun for both of us to spend time together like that.  She has come to love painting and coloring too so we do alot of that as well. 

Well, this is the final week before the BIG wedding day.  It is hectic around here with trying to finish things up but it is exciting too.  Hope to see some of you next Friday at the wedding!

Hugs to all!!!


May 30

I tried to send an update earlier but I couldn't quite get the computer to work with me :) so here it is now!

I can't believe my daughter is now 4 years old, it seems like only yesterday that she was this tiny, little squalling girl in my arms, where does the time go?

Isn't she amazing?   In all my years of dreaming of the perfect little girl I could never have imagined just how MUCH more perfect my own daughter would be.  The love I feel for her is so amazing and she is amazing.  It was at 1:27pm 4 years ago this beautiful little girl entered my life and changed it for the better.  When Nathan passed away I never imagined that I could love someone as much as I loved him but I do love Lily so very much.   For the second time, I became a mother and I am so honored and blessed to have 2 beautiful and unique children in my life. 

With Lily, life has been a rollercoaster, we both have had our share of up's and down's but I would not trade ANY of that for what I have been blessed with in my life.  Lily is an incredible little girl with a smile that melts your heart.  Her spirit is so strong and she tackles everything with a strength unlike anything I have ever seen before.  Each day with Lily is a gift, a precious gift that I have been honored to have been given.   She is my life, my strength and my joy and I thank GOD from the bottom of my heart for sending her into my life when I needed her most.  She challenges me, she inspires me, and she amazes me every single day....and more importantly she gives me so much joy.

One of our special songs we like to dance to is by Martina McBride called 'In my Daughter's Eyes' and one of the lines from the song goes, "but the truth is plain to see, she was sent to rescue me, I see who I want to be, in my daughters eyes" and that is so true. 

I could not be more proud of my little girl and I can only imagine how proud her big brother Nathan must be in Heaven watching over her....again, my two most treasured blessings in the world, my Natie and my Lily!

So Happy Birthday my big girl....you make me so proud and I am truly honored to be your mommy!  You are my dream come true.  Keep dreaming sweetie because you are living proof that dreams DO come true!

Love you forever and ever....Mommy


May 25

Tick, tock, tick, tock.....my daughter is almost 4!  I can't believe that it was 4 years ago that I was getting ready to welcome my second beautiful child to this world.  I wonder what I was doing at this moment 4 years ago awaiting this beautiful miracle who has brought so much joy and laughter to my life.  Little did I know the roller-coaster I would be embarking on for the next 4 years.  I would not trade these past 4 years for anything in this world, it has been amazing!

Nothing much has been going on in our little world here.  We did have Dena's Bridal Shower on Sunday which was fun, lots of food, lots of friends, and honestly a good time.  It is only a little more than 2 weeks away!  I can't believe it!  My little brother is going to be an old married man.  *sigh*

Lily has been doing awsome with her powerchair, we head back to Cincinnati next week for a follow up visit with the PT there and I will be excited for her to show off a bit for Miss Beth.  She loves to roll around in the grass and we have even ventured out to the outdoor mall one day last weekend.  She did a good job but it was a little overwhelming to her too and she only lasted about an hour and pooped out on me. 

Offical school is over for the year, the last day was Monday.  We are going to keep up with it this summer.

I need to head to bed....I will write later!


May 18

Gee, where does the time go?  Time for an update isn't it?

Lily is doing just fantastic!  Getting excited about her birthday, I guess she thinks she is getting lots of stuff ;).  I can't believe my little girl is going to be 4 already, where does the time go?  It seems like yesterday she was just a tiny little screaming baby who would NOT take a nap no matter what I did!

She is doing well, she only has 2 more days of school left then she thinks she is out for the summer but she is wrong.  I am going to continue with the same scheduel all summer long and work with her because I feel like she needs that consistancy right now and letting her off for a few months will only make her start all over next year so I am going to be her teacher this summer on the same days at the same time. 

Mothers Day was wonderful, just wonderful!  Of course Lily didn't know the difference because to her every day is Lily day but it was special for me.  First, Zachary (Lily's half brother) brought me flowers and balloon's and a beautiful, very touching card.  I cried of course...it was very sweet.  Then mom and dad came over and brought a few gifts from Lily ;) and a card that Lily signed for me.  Then we went over to mom and dad's and the Moose Lodge (my dad belongs to it), actually the Women of the Moose gave me a beautiful card with a gift certificate for a dinner for 2 at a nice restarant here in town, then another gift certificate for a massage, pedicure, and manicure!  Wow, a day of pampering!  What am I going to do with myself after that?  Anyway, it was very much appriciated and I am so thankful for the people who think about us.  It was a nice day.....

This past Saturday we again made a visit to the Shelby County Golf Charity Annual Fundraiser (you can visit their website at www.shelbycharity.com), it was a rainy day but turned out at the end quite nice and we had a nice time making our visit with all of the board members and finally getting to meet Michael Longs mother (Michael long is the boy that the charity was formed for).  Please go and read his story if you get a chance.  Lily had a nice time being the star that she is and didn't want leave, she loves all of the attention she was getting.

Other than that nothing else is going on, Lily is doing amazing in her powerchair and is getting over her fear of being outside in it, today she was driving around in the yard and making me chase her and tell her NO NO NO! which is a big change for us.  She doesn't want to be on the pavement, she wants to drive on the grass and spent the morning driving around between our back yard and the neighbors back yard so she is making HUGE progress with it.  It is so much fun watching her being mobile now and watching her face as she does something on her own.  It is huge!  I love it and I love her new born independence too.

Other than all of that we are gearing up for the wedding, we are now less than a month away, this weekend is Dena's shower so that will be fun.  Travis and Dena have so much going on, trying to finish it all but know it is going to be a beautiful wedding and we just love Dena so much.  It is exciting and I can't wait for the big day for both of them, Travis is an amazing brother and I am so happy for both of them, they are perfect for each other.   Lily will be a beautiful flowergirl and I am so honored that they are having Lily as a part of the ceremony, I know I will be crying seeing my big girl up there with them.  

Hugs to all and thanks for checking on us!  Thanks for signing the guestbook everyone, it means alot to see all the messages left.  I am sorry about the spam that is going on, poor Laura (who runs SMA Support) can't keep up with all the spamming going on with all of the guestbooks, it is sad that something as sacred as our children have to have that kind of stuff on the guestbooks.  I am trying to keep up with Lily and keep deleting every single day but it is overwhelming, today there is something like 20 spam guestbook entries so I am sorry if I accidently delete one from someone, I try not to but I am afraid I might have deleted a few off of the guestbook.  Anyway, hugs to all and I hope your week is going well!


May 6

Hello!  I should have posted before now but it has been a hectic week with us getting back from vacation and we had a few doctors appointments this week as well plus school etc. so sorry I have not updated until now.

So, we got home on last Saturday at about 10pm after a week of beaches, shopping, and having a good time!   We had a wonderful time in Florida and from what I understand missed some cold and yucky weather here at home.  The night before we left we had a horrible thunderstorm and had major hail around here.  It was scary for a bit and Obie was ready to just pass out and of course it all happened as I was trying to finish up with the packing.   After the hail rolled through it got down right cold!  We left at 5 am as planned, I grabbed Lily out of bed and threw her in the van on her pap but little snot wouldn't go back to sleep until about 10am or so.  It was a loooooooong drive going through Tennessee then Alabama and once you get off the expressway you STILL have quite a drive on the 2 lane roads which was a hassle.  We arrived at the Condo around 6pm that evening and it was a little cool there too but it was beautiful!  The Condo was nice, with 2 big bedrooms, a nice kitchen, 2 full bathrooms, dining/living room and a wonderful WONDERFUL balcony that over-looked the ocean.  It was wonderful!  Lily and I had a room with 2 beds so Lily had her own bed and I had mine...ahhhhhh!  I think we are going to do the same set up now in our room here at home, it was nice.

Lily was her amazing little self with the traveling, never whiney and she enjoyed being in the van!  We were tired of course on Saturday so we went to bed early.  On Sunday it was to windy and cool to hit the beach so we went into Destin and messed around.  It was nice, they had a HUGE outlet mall with nice upscale shops so of course we went shopping there then back home again.  We actually didn't get out on the beach until Wednesday because of the weather and even Wednesday it was breezy but it was nice.  Lily LOVED the beach, she had a blast rolling up and down the beach in her wagon that Pappy got her but she would NOT let anyone sit, she wanted to ROLL the whole time up and down the beach (quite a workout too!) so mainly Pappy walked her up and down the beach with me doing it every once in a while.  On Thursday we were back out on the beach and this time Lily rolled but we also got the umbrella's out and she relaxed in the shade playing in the sand.  I have some cute pictures of her little feet in the sand and her hand playing in the sand too.  She loved it when I buried her feet and hands in the sand and she would try and break free from the sand *successful with the hands*.  Poor thing, her eye lids got burnt because it was the ONLY place I didn't put sunscreen but the rest of her was fine.  I got fried though and burnt my shoulder so badly it was hard to wear a shirt!  It was just yesterday that they felt normal again but of course I am peeling like crazy.

Anyway, we had a great time and look forward to doing it again next year with Noni and Pappy.  It was wonderful to have them there to help entertain Lily.  I was able to go out on Tuesday by myself and do some fun stuff and it was nice to have someone else to help out with things too.  Lily really worked Pappy and she was spoiled rotten for sure.

The first part of the week Lily was terrible, whiney and drove me NUTS!  She didn't want to be home but finally she has settled back in to our routine again.

On Wednesday Lily had her first dentist appointment ever, she did great with it too!  The dentist was so nice and wonderful and let her stay right in her stroller and she got down on the floor with her to check out her teeth.  Lily's teeth look great and the ONLY problem is that her bottom teeth are a little loose from where she keeps the binky in her mouth at night while on Bipap so I am taking it out once she falls asleep but other than that everything looks great.

Monday's school day was NOT good.  We had several of the teachers there (the OT, PT, AT, and her teacher) and Lily was just not right from vacation just yet and for some reason Lily has a hard time doing school in her powerchair.  I think it is because she things she needs to be moving all the time in the chair and she doesn't want to just sit there and not be able to move in it but some of the therapists haven't seen her chair so they wanted her in it so they could see it.  She ended up throwing a big fit and choking so I had to get her out and they finished the day on the swing, flat.  She did fine after that and colored a beautiful picture so the rest of the school time was fine but like I said she was extra whiney for the first part of the week.  Today was school again and she did AWSOME, followed directions, and did everything she was supposed to do so I was proud of her today....well I am proud of her everyday but you know what I mean.

So, that is our long winded update for now.  I am still trying to get back to normal from our trip but it was wonderful!!! 

Hugs to all!!!!



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