Good Weekend

Kaylee had a pretty good weekend.  She has been talking a little more.  Sunday she sat through an hour’s worth of singing at church. During church she signed for her daddy a time or two. Then when she was ready to go to the back she signed Kaylee go.  Then sat during the meal after church like a big girl.  (pictures on the picture page, check them out) Today at school Kaylee had a good day.  Kaylee’s teacher finally got to hear her talk.  Kaylee said “mama” clear as a bell.  She’s been saying it most of the weekend.  I hope she is on track for my goal for her to be talking by her birthday this year.

Kaylee’s Vocabulary

I have added a page of words Kaylee can say and sign.  Look for Kaylee Vocabulary page over on the left hand side.  I will update this page as needed.

Thanks

Thanks to all that have left comments on here.  We love hearing from all of you.  Kaylee had a great night last night.  She slept 9 hours and woke up this morning back to the old Kaylee.  She has been bouncing, playing, eating and talking all day.  She still has a little bit of an upset stomach but it doesn’t seem to bothering her.   She’s great.  Again Thanks to everyone and please continue to leave any and all comments on any page or post on this site. 

Thanks

Kaylee’s seizures

First let me start by saying thanks to all that have ask about Kaylee.  She is home now.  We got home about 5:00 today.  To answer some questions:  Yesterday (Friday 09/04/09) was a great day it started out like any other day with the kids getting up and ready for school.  Kaylee wore her new GA bulldogs outfit and they had fun day at school.  Kaylee had a great time at school playing in the water and just had a great day in spite of the fact she didn’t sleep much the night before and she had been up since 1 am.  When she got home she sat down for lunch (it was good to see her eating again since she was just getting over an ear infection).  When she got done eating lunch she went to her room to take a nap.  I went it to check on her around 2:00 and she was laying there so still with her eyes open, I called her name and got NO response.  I felt her chest and her heart was racing.  At first i didn’t know what to think this was not the shaking like the last seizure and her eyes where still bouncing, but I could not get her to answer me.  Dad was already on his way up here because Kaylee was to go with him for the evening.  I call 911 (of course) they took her to Calhoun to stop the seizure then sent her to T.C. Thompson’s.  This seizure lasted an hour – an hour and fifteen minutes. (sorry I don’t know the exact time the seizure stopped)  A big thanks to Daniel (a friend of Deana’s that I had meet when we went to S.C. last summer was there) he stayed with me and hung around to be the one that took Kaylee to Chattanooga.  THANKS DANIEL!!  About 6:00 last night in the ER at T.C. Thompson she had another seizure this one was the jerky kind it only lasted about 10 minutes.  So she spent the night in the hospital.  She came out of this about 2:00 this morning but is having a harder time getting over this one.  The doctor said he thought the seizure may have been brought on by Kaylee coming down with a stomach virus because she threw up so many times during the seizure.  But she is home now and I hope things get back to normal as soon as possibly.  They increase her dose of Keppra by almost 50%.    Again a big thanks to Daniel for hanging around, it makes it easier to have someone you know driving the ambulance.  Daniel: I’m sorry people just can’t learn how to get out of the way of an ambulance.  But you got her there safe and quick THANKS.

 The differences between the seizures that Kaylee had were this time she was still and her eyes were moving and her temperature went low.  The seizure she had back in May she was jerking and her eyes were still and glazed and her temperature went up.

(Update 9-6-09 Kaylee’s seizure was brought on by the stomach virus,  they told us the signs to look for to confirm this and she now has them.)

There are so many different types of seizures out there and none of them look the same and can be caused by a virus or infection.  I just hope Kaylee never has another one.  She doesn’t deserve this.   I am glad she is better and that we still have her.  Thank God.

Time to Sing

Today during speech Kaylee speech therapist was working with her and a lot of times she will sing to her.  Well today Jennifer was singing the itsy bitsy spider and she got Kaylee to sing it to.  You couldn’t understand ever word she was singing but you could make it out and Kaylee wasn’t just making noise.   Kaylee was really singing and saying the words (REAL WORDS not her made up words).  I hope to catch this on tape for everyone to hear.

New Links

I have posted two new links (over on the left hand side) for you to check out.   These are links to websites for Adrienne O’Prey.  She is a young lady here in GA that we have found that has a similar condition that Kaylee has.  Please check out her website and blog.

K’s MRI

I have posted images from Kaylee MRI that she had done today.  You will be able to see that her brain is not normal.  You will be able to see what looks like black holds that is where white matter is missing and the fluid on her brain.  I did not post the worst looking images.  Please take a moment to check these out.  Over on the right side you will see a page marked MRI 8-21-09 click there to see them or click on the link here below.  As you look at these you will be able to see why K  has to fight so hard to do what she has to do.  She done fine today but we want know the results from the doctor until Monday unless someone reading this can tell us anything else.  Again Please check these out.      http://kayleenoel.wordpress.com/mri-08-21-09/

Another Great Talking Day

Kaylee had another great day talking.  Today at speech she was saying “swing” and “car”.  These were actually spoken words.  They also work on the “K” and “T” sounds.  She’s doing good with both of these.  One step closer to talking like everybody else.  That is my goal for her…  To be talking, talking by her birthday.  Last year it was walking and she done that now lets talk.  I made the statement today.  I can’t wait for Kaylee to come home from school with a note for getting in trouble for talking. (not being told to hush, but for saying words) Most parents do not want those kinds of notes (and I’m one of those) but for Kaylee it would be more than welcomed.  (1 note that is).  reminder don’t forget about Kaylee on Friday she goes for her MRI (with includes anesthesia).

Great Talking Day

Kaylee had a great day.  This morning she got her self up for school (3 minutes before the alarm clock).  This makes the second day in a roll she’s gotten herself up.  She loves school this year.  This morning after I was done fixing her hair (with she doesn’t like) she said MAMA DONE then I sat her on the couch andI ask her if she was ready to go to school.  She got off the couch came and grabbed my hand and was pulling on me.  I said let me get your book bag.  I grabbed the book bag and she pulled me again straight to the door.  She put her hand on the door knob (trying to open it) then looked at me so i would open the door.  To the truck she went.  She walked to the drivers side door and wanted in.  I tried to walk her around to the other side and she would pull against me.  Finally she let go of my hand a walked back to the drivers side door and put her hands on the handle.   SHE WANTED IN THAT DOOR!!!!.   So i opened it and put her in that way.  She sat there like the big girl that she is and waited til i got everything we needed.    (She’s growing up).    After school with she didn’t want to leave,Her teacher told her bye and I said Kaylee are you going to tell her bye, Kaylee shook her head “NO”.  She had speech therapy.  Jennifer took her back and let her swing for a while then when that was over Kaylee got down and started to walk off.  Jennifer and I both kept saying Kaylee come here (she was walking towards the door)  I rounded the corner and Kaylee was signing “Kaylee Bye Bye”.  We said no kaylee bye bye, we’ve got more work to do.  Ok we got her back to working so fast forward to the end.  It was time to go and Jennifer (Kaylee’s therapist) wanted Kaylee to say the word out so that she could get out of the chair.  Kaylee didn’t want to do it.  After a few minutesof asking you heard Kaylee yell  ”OUT”.  Great Day.  Let’s hope tomorrow is a good day also.  She goes back to the doctor to see if she has recovered some of the weight that she had lost.  Then next Friday is her MRI.

Low count

Kaylee has been feeling tired over the last few days and not eating or sleeping much.  This morning I took her to the doctor.  As reported early on this site Kaylee has lost 2 pounds over the last two months.  Today they done a blood count and noticed that her white count was normal but on the low side.  The doctor told us it looked like she was getting over a virus and that she may have a sore throat.  He told us to give her a dose of Tylenol in the mornings and a dose of Benadryl at night for a week.  Then next week they are going to weigh her again and we go from there.