Kaylee’s new piano

Thanks Uncle Marvin!!!!!!!!        She LOVES it.

 

The piano was given to uncle Marvin by (Truett Cathy). He seen Kaylee banging on Lisa’s and decided to give it to Kaylee. Thanks so much.

Finally got tired of playing so she grabs the blanket Aunt Judy made her and lays down on the piano Uncle Marvin gave her.

 

 

Kaylee speaks to Gracie

Yesterday while at cornerstone Kaylee and Gracie were playing in the waiting room.  While playing Kaylee walks to Gracie and calls her “Sissy”.  (Gracie has been teaching Kaylee to call her sissy.  Why I don’t know but that is what Gracie wants and it’s ok).   Later in the evening yesterday while Kaylee was watching Barney she looks at the t.v. and says “Barney dance, Barney dance”.

Today Kaylee has been a littler chatter box.  (not hollering) Her teacher said she has chattered all day trying to talk.  Also at PT they came out and said she had a great day and chattered the whole time (trying to talk).

Good Day Kaylee!!!

Jackson Christmas 2009

Kaylee had a great time and handled it better than anyone thought she would. (since she doesn’t do crowds)  We all had a great time.  Here are some pictures also please look at the video on the video page and there is also other video from the night located under links – other videos of Kaylee.

 

Neuro and GI checkup

She got a good report at the neurologist today.  And went for her weight check and her weight has came up from 29lbs. 3 weeks ago to 29.6lbs. today.

“Against All Odds” Take a Look at ME Now!

This will be a multiple update.  To start with Kaylee is starting to talk.  Friday (11-13-09) while she was going up the steps for speech she said “step” then Sunday (11-15-09) at church same time going down the steps she said “step” and again yesterday at speech again “step” also yesterday while Keith was putting her glasses on her she said “stop”.  In between all of this Kaylee has also been telling people hi and bye and signing more and reading more signs.  At church Kaylee likes to listen to the music but when it’s over she wants to go to the back.  Well this past sunday she wasn’t happy in church so I signed go play and she jumps up and starts walking to the back to go play.  Kaylee also will give you a hug or a kiss when you ask or tell you no if she doesn’t want to.   Also this past Saturday (11-14-09) Kaylee got to go skating for the first time.  She did great, she loved it.  She didn’t want to quit skating, for someone who has only been walking for a year I was surprised.  So can you guess what Kaylee wants for Christmas this year and yes she will be getting skates.  I have some video of her skating, it’s not the best because it wasn’t taken until the end and we were all getting tired.  He had to take breaks but Kaylee didn’t want to she wanted to keep skating.  The videos of Kaylee skating are now posted.  Please check out the video page to view these.  (there are 2 videos)

Cautiously Concerned

Kaylee went to the GI doctor today.  Kaylee got an ok but cautiously concerned report.  6 month checkups have now turned into having to go back in 3 weeks.  Her weight was 29 lbs. which is what it was 6 months ago.  He took into account that Kaylee has been sick a lot in the last few months and lost 3 lbs and has gained it back, but still wants to check her weight again in 3 weeks.  He also said that she has to get in 5 cans of pediasure a day at a bare minimal in order to get the calories that she needs. It was also mentioned that Kaylee was turning 5 and that it has been a long hard 5 years.  The doctor then said that the next 5 years are probably going to be harder.  I don’t know whats going to become of this or what options we may have to take in the future.  We all know that Kaylee is not going to be a tall or big person but I do want her to grow.  I do not want her on a feeding tube.  Please pray that she starts growing again and eating.

Next doctor’s appt.  Nov. 30th  Neurologist and GI.

Nov. 9th Kaylee weighs 29 lbs. and is 37 1/2″ tall.

Repeating

Kaylee is really talking today.   Keith was talking to her and told her to tell me no, no, no, no,no….   then Kaylee looked at me and repeated him saying no, no, no, no, no,no…..     Then a few moments later she was watch Family Fund on t.v. and one of the contestants was naming a movie and Kaylee repeat the name of the movie,  saying  “million dollar baby”.  She was just repeating what she hears but that’s a start.  She is trying to repeat everything she hears on t.v. today but so far this is what she has gotten the is correct.

Report

I now have the report from where Kaylee went to the Grace Center.  I have put it on here for everyone to read.  You can find the link to it over on the left side of this page or just click here. http://kayleenoel.wordpress.com/grace-center-report/

You may leave comments on that page about what you think of the report.  It is kind of lengthy but I think you will learn more about Kaylee and what she went through and learned.

Also here is a picture I took at 1:30 this morning.  Kaylee was coughing and Gracie got up and in the bed with her,

Great Eyes

Kaylee got the best repost EVER from the eye doctor today. He told her “Kaylee you get an A+ your eyes look great” He told us he loved how good her eyes looked and that if they stayed this way NO MORE SURGERY!!!! He said it was a good cha…nce they would stay straight this time. the CP and the seizures could change that but hope they won’t.  Her vision hasn’t changed ever it’s still a -4.

Also at the doctor’s office she was watching the episode of sponge bob learning to tie his shoes.   Kaylee started signing shoe.  She also talked all the way up there and all the way home.  Some of it we could understand and wished we could understand the rest (one day we will).  While she was talking she decided to see her way into mine and my dad’s conversation.  I had asked him a question and his answer was no and Kaylee looked at me and said NO NO MAMA.

Kaylee having fun:

Rocky Top
Kaylee wasn’t having a good day at the pumpkin patch.  So I decided ok we’ll go and put on Rocky Top to clam her down and this was a clip of her response.  She loves the song.  The only bad thing is she doesn’t have a lot of room to move in that car seat.