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 why 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.

 

Flu

Kaylee is starting to feel better.   Getting over the Flu is not easy for her.  She’s had a bad case of it Type A.  Right now she up watching t.v. but she’s still not sleeping good at night.  Thanks to everyone who has been checking on her.

Update on Hearing test

Near the end of a long day. (no kid likes having to be put to sleep) Kaylee seen here kicking back relaxing watching cartoons after a long hard day. 

Kaylee passed her hearing test with flying colors. He said he got perfect waves, this is the best results we’ve every gotten. So he said she had no excuse for not hearing someone other than ignoring them. Right now she’s sleeping off that knockout medicine.

Consistently Talking

Today Kaylee has been talking meaningfully and consistently.  After church we were leaving and she told everybody bye-bye  everyone standing around hear her and told her bye.  She wasn’t told to do this she was just ready to go. It was clear as a bell, it wasn’t her normal i i she pronounced every letter.  She has also been answering questions and if we do something she doesn’t want us to she has been saying  no no mama, or no no daddy  and pronouncing those words also not using her baby talk.

Keep it coming Kaylee, you’re on your way to talking like everybody else keep trying.  You’ve just about got it.

More Talking

I know I sound like a broken record on this, I’m sorry but my goal is for Kaylee to be talking by her birthday.  After tonight that goal looks like it could really happen.  Kaylee has been talking most of the evening and what she couldn’t say she tried very hard.  When her bottle was empty Keith wanted me to get a refill of it and also refill his glass of water, I didn’t hear him good but Kaylee said something that we could not completely understand but in her speech we made out the words MAMA andDADDY (so we are thinking that she was trying to tell me what Keith had said) also when she got done eating she said DONE, DONE DADA.  Then later Kaylee came to get us to change her movie so I was asking her what she wanted to watch.  When I named a title I told her if she didn’t want to watch it to tell me no.  I named 3 movies and each time Kaylee looked at me and said NO, NO MAMA(i got that all 3 times) finally the 4th movie she wanted to watch it.  Also one time this evening we were telling Cortney to get out of the tub and she wasn’t listening.  Kaylee walked by Cortney’s room and bathroom and was hollering at her it was almost like Kaylee was getting on to Cortney for us.   She is really starting to say a lot I just wished I could understand it all.  She has 9 weeks and one day til her birthday to make this happen. All I can say is come on Kaylee keep trying.

Answers from Neurologist Vist

We did get all of our questions answered today but she has to go back Nov. 30th.  We told him about the zone out spells, he said those were seizures and bump up her keppra.  (any one reading this that may watch after Kaylee at anytime: the zone out spells are- decrease level of consciousness and response lasting 15 – 60 seconds then slowly coming back)  The answers we did get are that it’s unlikely but couldn’t be ruled out that a seizure could be brought on by her getting as mad as she does sometimes.  Also that if the seizure didn’t get under control that it could cause changes in her developmental but is not affecting it yet.  He also said that getting one of the service dogs for seizure patients would be a good idea.  He said he’s seen plenty of his patients with them.  We also found out that Kaylee also has a thin layer of gray matter in a couple areas and that she has what is called Chiari malformation type 1 – Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance.  Normally the cerebellum and parts of the brainstem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal).  When part of the cerebellum is located below the foramen magnum.  Type Iinvolves the extension of the cerebellar tonsils (the lower part of the cerebellum) into the foramen magnum, without involving the brainstem. Normally, only the spinal cord passes through this opening.  Infants may have symptoms from any type of CM and may have difficulty swallowing, irritability when being fed, excessive drooling, a weak cry, gagging or vomiting, arm weakness, a stiff neck, breathing problems, developmental delays, and an inability to gain weight.   I know this is a lot to read but when you read some or this it explains a lot about Kaylee and makes since when you think about.  We have also found out so other stuff I will inform you on it after I research it some more.  Thanks to all the people who are reading this and leaving comments.  Thanks for caring about Kaylee and wanting to keep up with her.  She has come a long way and is not stopping yet, she has a long way to go.  Again thanks to all.