Lily's April 2005 Journal

April 20

For those of you who emailed me saying you wanted the movies of Lily driving...just hold on!  The first set of movies I did on the camera I accidently deleted them :( so today while we were outside I did some more but did a different setting on the camera and now all the emails keep coming back to me saying that the file was to big to send SO I will have to shrink them and try to send them again.  Not sure if I can do that or not but if not then I will have to just redo it again.  I am hoping a friend of mine can help me figure out how to put some of the clips on the website.  They have no sound but you can see her anyway as soon as I get all the technical things worked out.

Not much else to report, it has been a beautiful week, the weather has been perfect and we have been enjoying it.  Check out the picture on the front of the website, doesn't my girl look just beautiful?  We were just playing around outside and the dogwood trees are in full bloom so I put some of the flowers in her hair.

She has been doing awsome in her powerchair, I am so proud of her!  She is sitting up between 2-3 hours a day, almost 2 hours straight now and she hates it when I turn the power off.   On Tuesday evening she was sitting in the chair and I had to go to the restroom so I turned her chair off and she YELLED at me the whole time it was off.  She was content as soon as I turned it back on and let her drive around crashing into everything...grrrrr.  Today she scratched up the front door because she got stuck.   Yesterday she drove off the sidewalk (with me right beside her...bad mommy) and it scared me but she thought it was funny.  She LOVES driving through the grass outside, it was so bumpy but she loves anything that is rougher than normal.  She cracks me up with those sorts of things, little rough neck girl!

Today was our Wal-Mart trip for our vacation, spent way to much money but of course we had fun doing it.   Lily was to funny in the store today, she was so chatty and social and she normally HATES Wal-Mart.  I am excited, Lily doesn't seem to understand what the deal is but hopefully she will love Florida.  Tomorrow and Friday are the big packing days...oh how I HATE to pack for trips because of all the stuff I have to remember to get!   Lily has LOTS of stuff that have to go.

Off to bed...hugs to all!


April 17

What a beautiful glorious day today was, really the last week has been just beautiful.  I love spring, everything feels so alive, trees are getting their leaves, flowers are blooming, people are taking walks, ahhhhhh how I LOVE it!

We took it easy today, didn't do much of anything other than a run to the grocery this evening.   I had a brilliant idea today, I decided to take Lily outside, spread some blankets and rest under a tree in the shade letting her enjoy the fresh air while I snuggled and chatted with my girl and when she got tired of chatting she had her DVD player and I had a book to read.  Well, it didn't work out quite how I thought it would of course.   I could not find enough shade in the yard and while I did spread everything out under a tree it just didn't work plus Lily hated laying on the ground and she fussed and complained until finally we moved up closer to the house where the shade was (from the house) so again I spread the blankets and we layed down on the ground, it was a no go.   I guess when you can't move the ground is much to hard even with the grass and blankets and of course there is always the stray rock or uneven ground so I ended up getting out a lawn chair where she could lay flat and be comfortable at the same time so I spread out a blanket on the chair and made myself a little pallet on the ground next to her and we chatted and played for a while.  She had her bubble blower and we blew bubbles around in the air and listened to the birds chatter away.  It was nice, really nice. 

She did get in her chair today for a long while but we didn't go outside with it, we just tooled around the house with it for now.  She sat in it for about 1 1/2 and did great.   A friend pointed out that her neck might have been hurting the other day when she was having such a hard time from going off the pavement and her head fell forward to hard, I didn't think about that at all and I guess that could be part of it.  I know MY head would hurt like heck if it was whiplashed forward like that and I had no head control so Thanks Liz for pointing that out, it makes sense!

The countdown is on, we leave for Florida in less than a week so this week will be crazy around here with the last minute details and such, I still have things I need to buy for the trip but we are set with clothing I think ;).  You know Princess Lily has clothes to wear but mommy needed some so now I have TONS of clothes now! 

Heading to bed, tomorrow is school and we didn't even do our homework!  Ick!  Tomorrow morning before her teacher comes I am going to have to help her finish her project (matching shapes...oh how she LOVES that, ha ha).

Thanks guys for all the nice emails and signing Lily's guestbook.  It means so much to us to know so many people care. 


April 16

Oh how I love mornings like this!  NOT!  Lily has been up since around 5:30am for what reason I don't know.  She never cries or anything but just lays there awake and she knows that she isn't allowed a movie until 7am so I doze off and on hoping that she goes back to sleep, that is a huge NOPE but somehow she knows when 7am rolls around because at 7:10 this morning she starts with the "MOM, MOM, MOM, MOM, MOM" to let me know it is NOW time for a movie.  She is back there now watching Stanley, she should be in a great mood today.

We went shopping yesterday, I spent way to much money and it wasn't for Lily, it was for ME this time!  I needed some clothes to go to Florida.  Lily is always dressed like a million bucks (or as mom says, a doctors kid) and I always look crummy so I got a few out outfits and Lily only got some socks :) which she needed too.

Anyway, we headed to the Summit (the outdoor mall), it was such a beautiful day and I took a chance to and took the powerchair (the stroller went too but it was folded up and out of the way), I wanted to see how she did with driving someplace like that.  She did great for the first while, we stayed in the shade and drove up one side and I had to help her of course but she seemed to be having fun but once we got down to the end of the one side (about a 45 minute drive at the rate the chair goes) I could tell she was getting tired so we started back.  She made it most of the way back but then had a melt down wanting out of it so I had to carry her and drive the chair (talk about multi-tasking!).  You know, I think it is her neck that is hurting her in it, the headrest is pushed to far up because in school yesterday she did fine until the end and she started crying and again I think it was the neck because Lily fusses while doing school but never cries tears and I could tell something was hurting.  So I get home (we spent the rest of the day in her stroller) I decided to work on the headrest...well BIG mistake!  I have already broke the chair!!!  Actually, the bolt was so tight (and you have to use an allen wrench to undo it) that it broke the end of the allen wrench then I stripped it on top of that!   So now I can't move the headrest back.....grrrrr.  I got so frustrated last night!  I had to finally quit working with it so now she can't use it until I get the headrest taken care of because it hurts her neck.  Travis is going to come over today to look at it and see if we can get it out somehow and if we can't then I am going to have to call the wheelchair clinic on Monday and confess to what I did :), thankfully it is all under warranty so we should be able to get a new piece for it but she is doing so well with it I want her to keep driving BUT until we get the headrest back in the right place no driving because I don't want her to HATE the chair either.

Up until the meltdown at the Summit yesterday, Lily was having alot of fun driving, she is so proud of herself!  She just cheeses and smiles at everyone else too.  Very CUTE! 

Ok, I gotta get......hugs to everyone!


April 14

Well, we brought the powerchair home on Tuesday and Lily has been 'playing' with it every day since.  I think it is more of a wonderful toy for me!  I have fiddled and fooled with it getting it the way I want it for Lily, they did a great job in Cincinnati with it but I know Lily better than anyone so I have been trying to make it better for Lily, moving the seat, moving the arm rests, etc.  I have it just about where I want it except for the joystick but I can't do anything with that until I get the right allen wrench.

Lily really seems to get it, she can move her hand around until she gets it where she wants it to move it forward which is pretty cool.  She does need to learn stop much better because she seems to like crashing into things alot.  She is really funny in it and is so proud of herself and I am so proud of her as well.  She is doing great with it, moving along much faster than I thought she would.  We headed outside for a bit today with it, just behind the house where we have the parking lot part and she did well, she drove it pretty straight trying to 'hit' me or drive to me then she thought it would be cute to keep hitting the van, no matter where I put her she would make a b-line for the van and run into it, little stinker!  We went around the front of the house and she drove off the pavement onto the grass and her head lost it's balance and because I didn't have the head support things that keep her head up were not in the perfect spot her head fell forward scaring her pretty badly (and me too!) and so then she wanted right out of it so we had to drive it in and get out of it but up until then she was having a good time.   Poor thing!  She gets pretty tired out from sitting up so we need to work on something that when I lay her back her head can be flat and turned to the side because the way the headrest is, cupping her head, I can't seem to get her head flat enough and turned to the side so she doesn't choke but we will work something out.

Tomorrow is school then I told Lily because she has worked so hard this week with the powerchair we were going shopping!  She needs a break and a day to do something fun like that.   I wasn't going to take her powerchair but I am torn, I want the chair to become a part of her but I also don't want to push her either and make her hate being in it too.   I want her to understand that this is her legs and that she can be more independent with it but at the same time I don't want to make her tired and not want to get in it, I don't want it to seem like work so I am deciding tonight or tomorrow morning if we will take the chair shopping with us or not.  I guess we will see huh?

I guess next week we will be getting ready to leave for Florida, we are excited, it should be a nice week to get away and relax on the beach and do some fun shopping and site seeing too.  

I have some video of Lily doing her powerchair that I took the other day (on the digital camera) if anyone would like to see it, it really is very cool!  Shoot me an email if you want to see her driving it and I will be more than happy to send it along.

Nothing much else has been going on, just keeping busy with all of the above and being so glad that it is finally spring and we can get out more! 

Hugs to all!


April 11

Again, it seems as if it has been way to long since updating!  Sorry guys (and thanks Liz for reminding me).  It seems we are always busy so this will be a short update for now.

All the driving to Cincinnati has been tiring and we go again tomorrow but we are bringing back the Powerchair so that is exciting!  Hopefully once we get it home we can go up maybe once or twice a month for a few months then stay home from then on.  She still needs to get better with it, she sorta gets it but it is ironing the kinks out of it right now.  

School is back in session again after spring break, Lily did ok, she still zones out alot except when it comes to the art and crafts part, the kid LOVES to glue!

Next week, the 23rd we leave for Florida!  A week of fun in the sun, laying on the beach, shopping, listening to the ocean....ahhhhhhh!  I hope Lily likes the beach and I hope she has a good time.  We have ordered all our stuff, new clothes, swimming suits and all that jazz. I am excited! 

I need to head off to bed, we have to be up and out early but we bring the chair home!  Yeah!!!

Hugs to all!.



December 2001 January 2002 February 2002
March 2002 April 2002 May 2002
June 2002 July 2002 August 2002
September 2002 October 2002 November 2002
December 2003 January 2004 February 2004
March 2004 April 2004 May 2004
June 2004 July 2004 August 2004
September 2004 October 2004 November 2004
December 2004 January 2005 February 2005
March 2005 April 2005 May 2005
June 2005 July 2005 August 2005