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The Amazing Katie

Journal(updates and progress after Surgery)

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For complete details on surgery please go to Updates page 1

OCT. 2003
 

      Katie has been home from surgery since June 8. She is doing really well she has well over a 1000 new words and her sentence structure has really advanced a lot. she now says anywhere from 6-8 word sentences. Physically it has not slowed her down much, she is weaker on the left side and her left hand just a helper tool if she chooses to use it. Yes it takes us asking her to use it then she will shake hands with it or give a high five.She can use it with a universal cuff and supervision to feed herself but really prefers the right hand. She has taught herself to stand up with just one hand from the middle of the floor, and just take off being her busy little bee she is. Her personality is just too cute to see the new things she does. When something doesn't go her way she says "I yia yia"! Too Cute! Her PRESCHOOL TEACHER IS ALREADY TALKING ABOUT KINDERGARDEN NEXT YEAR! Well I think maybe another year of preschool, but we will see. Katie also has an AFO for her left leg which helps stable the left ankle. She has some tightness in the left ankle and started bo-tox injections in June. She has had 2 rounds of shots and now we are doing serial casting but no that does not slow her down. She just goes goes goes. Even with the cast on. They say they are really impressed with the range they are getting with the casting that she will probably only need it for 4 weeks. We have the cast changed every week and she is now on her second cast. We thank God everyday! We are amazed by her progress and she seems so determined which is GREAT! Katie also has been taken off of Klonopin since the last update and now remains on Keppra and Carbatrol. She will have her post-op MRI and EEG in Nov. of this year and we are praying everything is just a ok. We thank you all for praying for Katie and Please continue to. Thank you again and GOD BLESS.Remember you can e-mail me anytime. 

Oh vision! She is also learning how to compensate for the peripheral vision loss, she does well most of the time but when we are reading a book thats when she seems to have the most problems, but we are working on it.

Oh just a few more things Katie's favorite things have always been dancing and singing well yes she is back to dancing around and singing but I think she may be a tap dancer she just loves to pitter patter those feet when she hears music. So I think she may be a future tapper:) AND LASTLY her hair has came back brown not blond. I will have her picture done soon to show you her new look.(PICTURES HAVE BEEN ADDED TO PHOTOS RECOVERY PAGE)

Nov. 2003

I forgot to tell you in the last update. Katie was approved for the make a wish foundation. She made her wish on Oct. 26 and wished for a new bedroom. They are going to give her a princess bedroom. It is going to be so amazing and I cant wait for her to see it. I am so excited for her.  Once it is finished I will take pictures for you all to see. Cleveland called also Katie has her EEG scheduled on the 19th of this month. I am praying praying praying its a good one. Will update soon. I promise.

November 18:   

     Tomorrow is EEG day and I am extremly nervous. I am just praying the results will be great! I know she is going to have a fit though. I wonder if she is going to think they are giving her a BOO BOO on her head again? Oh I hope not but she really hates for you to touch her head, since surgery.  I think she thinks we are going to make it hurt again! I tell her its ok. Sometimes shes okay with that other times"NO WAY"!

     On a better note Katies language just keeps amazing us! The other night she was teasing her dad. She kept telling him she was Ma's girl, he would say,"your Daddy's" Finally after the 4th time she said, "I Ma's girl NANANANA"! Just way too funny, I was  laughing so hard! Another thing Katie has been doing the last couple weeks  really tears at my heart she kisses her left hand at night before I put her splint on then she holds it up for me to kiss. I now realize how much she misses the use of the left hand . I think she thinks its the same as a scratch or bump mommy kisses it and it finally gets better. I just feel like crying. I really wish I had magic and could give her the full use back in her hand, but I realize that is just not possible.  

December 11, 2003: 

     I just wanted to tell you the good news about Katie's EEG.  Her neurologist called 11/25/03 his explanation is the EEG looks good he explains there is a spike wave formation in an area of the brain that was removed so he also says it really does not make since and he is not real concerned because there should be no connective tissue there. Wow what a relief! He also says the left brain looks great and is running at a typical speed of a 5yr old!!!!!! He also explained Katie will never have a normal EEG because of so much of the brain being removed. This I knew but,  We just don't want to see any epileptic form! So we are praying praying praying, this will cause no problems.

 
     He also told us that Katie will have to stay on the same dose of meds for 2 years before weaning down. This kinda makes me sad. I was hoping we could wean down on some of the dosage.  You see the two Medicines she does take are really adult doses not children doses. When she got so sick they had no choice but to raise the doses to control the seizures and now they are afraid to back down. I know I need to be patient but sometimes I think the high doses do affect her ability to concentrate. But over all just to hear her EEG looks over 1000 times better lifts my spirt.  He also said that to see she is speaking thousands of new words and is so much more attentive gives him the proof that surgery was the best way to go! We hope all of you have a happy holiday.
 
     This HOLIDAY SEASON will be one of many thanks and sorrow for us WE THANK GOD  everyday for Katie and her progress  but with the holiday upon us The children and I really MISS MY MOTHER AND WISH SHE COULD HAVE BEEN HERE physically to enjoy THANKSGIVING AND XMAS WITH US, although I know and so does the children in our hearts she will be right here with us but we still miss her dearly! We thank all of you for praying for Katie and please, please, please keep praying THEY ARE WORKING !!!
     I will update again after Katie's MRI and visit with the neurologist on Monday Dec. 15th. Please pray the MRI goes okay!  
 
Dec. 16, 2003
     Katie did not have her MRI on the 15th due to the weather. It is in the process of being rescheduled. I will post the new date as soon as I find out.
 
January 15,2004
     Well the last month has really been a great one. I can honestly tell you there are not many words Katie can't say. Everyday she does something new and I find my self in awe of her.  She knows her opposites very well (soft, hard, up, down, on, off, cold,hot and many more). She is just amazing to us. Katie also came up to me last week and said "Ma I  need to poo in potty" Oh my gosh what a big leap and yes she did go in potty. So now we are working with that and she is doing very well she gets so happy and claps and yells I did it, I did it, then she comes out of the bathroom and tells everyone I did it I pottied. She even sings some nursery rhymes for instance me and my husband were sitting watching the news and in the background we hear ashes ashes we all fall down we turn as Katie falls to the ground. We just looked at each other our faces beaming with joy and said well I guess we know what activity they done in school today. It is just a beauty to watch as my little girl finds the world around her. Even her brothers tell us look mom what Katies doing or she will say something and they will say mom did you know Katie could say that. They even sometimes use it to there advantage(example if I say no about something they will tell her to say"Mom you mean") OH yes they know what will get to you're heart! Then her youngest brother Ryan whom happens to be her best buddy is realizing how well Katie tattles! She tells on him for everything. 
    Well I guess I better update on other happenings. Katie was having alot of trouble with  blisters and bruises on her left foot from the AFO. They have tried to modified it many times with different paddings and it still leaves her so sore. She tells me MA IT HURTS IT HURTS. So finally I have just said no more re-adjusting it. I called our insurance told them what was going on and they have approved that it is ok to get a new one. I think most of the problem was she went through the serial casting on her foot to put it back in a 90 degree angle and the AFO was made before the casting. So hopefully when she gets her new one we will not have these problems. I have also rescheduled her MRI and it will be done in late Febuary, hopefully the weather will permit us to go this time. In other news I think Make a Wish Foundation will be starting on her room soon, we are getting so excited for her and just cannot wait for her to have her new bedroom.  Well I guess thats about all for now. I will update again soon. Have a happy and safe New Year! 
 
Feb.19, 2004
 
     Today Katie had an appt. in Cleveland for her third shot of Bo-tox, which she hates very much. She was very good though, but very nervous from the moment we arrived at the doctors office. Katie started prancing around when we got in the office this is what  she does when she is nervous, she new exactly what she was in store for from the moment we arrived.  Then when the doctor walked in her room to see her she said "Oh no". Yes she knew, I felt so sorry for the poor thing. Then, when he took her shoe, sock and brace off she was begging him to put them back on. She would say" shoe on please".  I was almost in tears watching her. Well finally the shots were over and with loving from Mommy she was feeling better. Then she did the cuttest thing, while we were waiting in the hall for the Dr. to bring back her script for a new AFO, she would walk to the corner of the hall peak around to see if he  was coming then all of a sudden she yelled plain as day "uh oh HE'S COMING AGAIN" and took off running. Yes it was cute but all at the same time sad. Well just when we thought Katie was in the clear of seeing this doctor for at least 3 months my phone rings 5 minutes after arriving home its the dreaded doctor he wants Katie to come in Monday to his office after her MRI, and neurology appt. to have a cast put on to hold her foot in a neutral position again. He said that he really felt she needed it for a couple weeks and that it would be the kind I could remove without returning to the office. Oh boy wait till she see's him again. She will not be HAPPY!
 
  Well for some other news Katie's development continues to really blossom she does something new everyday that truly amazes us. She teaches me everyday how much determination, strength, faith and will- power mean to us all. With out those where would we be? She definetly carries all those qualities and so much more.
 
March 17, 2004
     Sorry its been a few weeks since our last update. Katie has been sick twice since the last posting she started off with a cold, then just as that cleared up her and her siblings shared the stomach flu(I know Fun). Well anyway to update, she had her MRI in cleveland on Feb. 23 and saw the neurologist. She was very scared to be in the MRI department, from the moment we walked in she kept trying to hide her arms behind her back. Yes she knew that a needle would follow for sure being in that department of the clinic. Although she did settle down and was a good girl through the whole process.  Once the MRI was over and off course once she woke up from sedation we were off to see the neurologist to find out the results of the MRI.  Well I admit I was very nervous to look at her films, because I have never seen A picture of her brain since surgery. But her neurologist is such a wonderful and thorough doctor when he put the films up to review with us he explained them in detail even showing us where it was seperated from the left brain.  The whole right side of the brain from frontal lobe to the temporal lobe was a big empty space. The only part left was the occipital lobe and you could see where it was disconnected.  Amazing for me to look at and then look at my daughter and see her a thriving 5 year old with so much personality and love to offer this world. He then preceded to explain there looked like no bleed or excessive fluid build up in the empty cavity and it looked good (whew what a relief)! The Doctor was also very very pleased with her development and said this is exactly what they wanted to see, her development soaring to brand new heights. Now his Nurse Practicioner kept commenting on how wonderful she was doing and how Katie seemed like a whole different child. Oh course I was hoping Katie would show off her brand new talents for them to see and witout hesitation she did! She even looked at the doctor and said"Hey Man you wanna fight man!" Ok this talent she could of left out, but was very cute. You gotta remember she was sedated for the MRI so during her visit she was a little goofed up. Well in other news we have made our decision on preschool next year or Kindergarden and we choosed preschool again. Our decision was based on the fact she is learning so much so fast we want to give her every chance to catch up. Oh another highlight is her career I reported earlier I thought she would be a dancer when she grows up well now she has me thinking she is a future meterologist. Only because when I was leaving for work the other day she said"Mommy take your coat, its gonna rain today".  And to my  disbelief it did Rain that evening. So go figure,I guess we all will just have to follow her journey along and see which career she will choose and how many times it will change.
 
 
 
                          Updates Page May 26,2004
    
  
  
    
 
 
 
        
 
 
 
 

 

   


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