Medical Update

Today Kaylee went back to Chattanooga.  She went to the Neurologist and the GI doctor.  The GI doctor was very pleased with her and her weight had increased from 29.6 lbs. to 30.4 lbs. and she was 38″ tall.  He even made the comment to her that she was getting a little bit of a tummy.  The neurologist was also very pleased with her and all the progress that she has made.  She has came so far.  He is also sending her to a new doctor so that Kaylee can be looked at and tested so that we can find out what the best way to teach her will be.  He believes she is learning and what you give her is going in she just can’t always get it out.  And also get some ideas on how to read Kaylee better and learn her style of communication.  Here is the information on the new doctor.  (This information came from:  http://www.tndisability.org/category/topic/_headlines www.siskin.org )

Regina Gargus, M.D.
An accomplished triple board certified developmental behavioral pediatrician, Dr. Regina Gargus is the medical director of the Siskin Children’s Institute-T.C. Thompson Children’s Hospital Center for Developmental Behavioral Pediatrics. She most recently served as the medical director at the J.L. Dennis Developmental Center at the University of Arkansas for Medical Sciences in Little Rock. She received her medical degree from the Medical College of Virginia-Virginia Commonwealth University, where she also completed her pediatric residency and a neonatology fellowship. She is a certified physician executive by the American College of Physician Executives, with a master of science in administrative medicine from the University of Wisconsin at Madison. She completed a developmental behavioral pediatric fellowship at Rhode Island’s Brown University School of Medicine in June 2005. 

Center’s areas of focus
Autism Spectrum Disorders, Anxiety Disorders, Attention Deficit Hyperactivity Disorders, Behavioral Disturbance in Early Childhood,  Chromosomal Developmental Impairments, Communication-Language Disorders, Cognitive Impairments, Developmental Delays, Down Syndrome, Motor Impairments, Preterm Infant Developmental Surveillance, Sensory Integration Dysfunction, Sleep Disturbance in Childhood

 

Airport Fieldtrip

Kaylee had mix feelings about the airport.  One minute she was ok with it the next she didn’t want to be there.  When it come to looking at the planes she liked them as you can see in these pictures. 

But when they pulled out the life force helicopter she got VERY upset.  Everytime I got her near it she screamed then when one of the crew members started talking she screamed even louder.  If i took her away from it she claimed down, I tried back and forth she just would not have anything to do with it.  I think something in her self conscious remember being air lifted. (It was only back in May)  After we got home I asked Kaylee about the trip.  Kaylee was there something at the airport that scared you?  She said “uh-huh”   Then when asked Was it the airplane?  “No, no”     Was it the helicopter?  “uh-huh” and she started to get upset again and looked like she was going to cry.  So there was defiantly something that scared her about it.

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,