Wednesday, October 31, 2007, 03:05 -
Posted by Administrator
Whoo hoo. Well everyone I have gained weight. All the fattening food mommy and daddy have been feeding me has paid off. It tastes pretty good too. On Friday I go to see Dr. Aru about my weight to see if he has any more ideas for mommy and daddy to do. We are tying to avoid getting a G-tube. If I keep going at this rate I should be okay.

Tomorrow I am going to dress up as the Linux Penguin. I will have mommy put up pictures for everyone. Tomorrow my speech therapist starts, mommy hopes that I like her and that we work well together.  Last night I took a late bath because I was rolling all over the floor and wiggling like a worm. All of us had a lot of fun playing on the floor.


reply to rude comment.... 
Sunday, October 28, 2007, 21:48 -
Posted by Administrator
Christina you poor little girl. They have you taking Ativan!!!!?????!!!!! That is really scary. I wish you were old enough to tell them no.

Late update on Doc 
Sunday, October 21, 2007, 03:38 -
Posted by Administrator
Well sorry that I am late with my update things have been busy. Dr. Moore is says that I am too skinny for my height and that I am short. So I have to go see another doctor his name is Aru. He is a GI doc. I saw him when I had my ilieostomy. They want to make sure that my belly is working right and to come up with ways to gain more weight, so my growth is no stunted. I am also being referred to another doctor at Children's in St.Paul. He is a bone and muscle doctor. They will do X rays and make sure that my bones are doing well. They are talking about putting me on baclofen that is an anti spastic to help with my tight muscles. I will probably start taking it at night to help me sleep. Mom has to stay up most nights and rub my legs because they hurt and get real tight when I try to sleep. Dr. Moore also gave me anew prescription for adivan to calm me because I get out of control. Mom and Dad don't like to give it to me but in the car there really is no choice. Moore recommends it because it is unhealthy for me to get so mad and then I can not control it.
On Tuesday all my therapist are coming to meet with me and mom. PT,OT,ST,Vision specialist and my school teacher. That will be a busy day. Nov. 2 I go back to the cities to see Aru and we are still waiting for my appointment with the bone and muscle doctor. I think that his name is Tamaguchi. November 9 mom is going to have surgery on her ribs so this is going to be a busy month. I will keep everyone posted as much as possible.
I want to thank grandma Kar for all the time that she spends with me. I love to sing and read books with my grammy Kar. I am off to bed for now. Good night.

Oh ya we are still working with insurance to get my gait trainer so I can learn to walk. I got letters from all my specialist to help out. Doctor Moore even put in his letter that I cerebral palsy (CP) so I hope that I get it.

     Grandma Kar and I hanging out

        Mom Dad and I at the hospital

          Me early morning so sleepy

New Pictures 
Monday, October 15, 2007, 19:22 -
Posted by Administrator
Hi everyone. I am going to be quick.. Just wanted to put up some new pictures. I am going to the cities tomorrow to see Dr. Moore. Mommy and grandma Kar took me to get a new car seat yesterday. I will try it out tomorrow.  I am still sick my cold won't go away. So here are some new pictures.

 Just hanging out in bed
Mom and I cuddling in the morning

The eye doc 
Thursday, October 11, 2007, 03:25 -
Posted by Administrator
Hi sorry it has been awhile. Mommy, Daddy and I went to the cities for the eye doctor on Tuesday. It went pretty well. I found out that I have damage to the optic nerve in my eyes on both of them. Dr. Engle is not sure how bad and we will not know until later in life. Well I am sick and this is the first time I have been sick like this. I have a stuffy and runny nose. I didn't feel like eating yesterday. I am feeling better today but all I want to do is cuddle and sleep. I hope that I get over this cold soon. It is no fun. I go back to the cities to see Dr. Moore on Tuesday. I can't wait to show him what I have learned. I think that he will be impressed. I know that Mommy and Daddy are, but they are suppose to be. HA HA I will update everyone when I get back.
Good night.

The mall 
Monday, October 01, 2007, 17:21 -
Posted by Administrator
This Sunday mom and Alissa went to the mall and got me some new clothes. We went to get me my Halloween costume but they didn't have the one I wanted so we got some cute outfits instead. Well I make anything cute. Hee hee.  Alissa and I are getting along better but I think that I still need more time.
Mommy got me some barrettes for my hair they are cute but daddy does not like them. My walking is getting much better but I have to want to walk. Mommy started brushing me again to see if it will help with my sleeping and my startling. We just started on Saturday so we will see in a week or so.

More pictures to come soon.....
My room 
Monday, September 24, 2007, 02:05 -
Posted by Administrator
Daddy took my crib down yesterday and now my room has a lot of toys in it to take the place of the crib. I have been spending more time in my room too. I took a two hour nap all by my self today. It is getting easier to stay by myself. I even have a reading chair too.
Alissa came over on Saturday and we got along pretty well. She is going to be my respite care provider.
Grandpa came over today and hung out for awhile, he brought me a donut.
Mom and Dad are keeping up on making me walk regularly. I am getting better at it but it still isn't my favorite. Oh ya mom took me to dads work last week to bring him good coffee. It was fun. We also went with grandma Kar, on Friday,  to turn in some papers at a couple of places and we all got rained on.
Thank you aunt Robyn and uncle James for my purple jammies.

My Bed 
Tuesday, September 18, 2007, 17:06 -
Posted by Administrator
Guess what ? I slept in my bed all by myself from 11:30 - 4:30. Mommy was so proud of me. It has only been my second night in my room.
My neurology appointment went well- I can't remember if I updated everyone. Dr. Burstien says that I am doing great. He is impressed with all my accomplishments. So is mommy and daddy. Today Katie comes to play with me. Also mommy found a respite care giver and it is Alissa. She is going to come over today and play with me this evening. Grandma Kar is going to come over too. I sure have a busy day. I will have to find some time to nap in there.

Yesterday mommy and I stopped over to great grandma's for a visit. I played and laughed it was pretty fun. Henry would not come to visit ( the cat) he hid from me.

Friday, September 14, 2007, 19:30 -
Posted by Administrator
Hi everyone. We are going to add speech therapy to my list of therapies. Mom and I don't know when they are going to start. I will let you know when we start. I am sure that I won't like it at first but I will get use to it. 

So it is getting cold and I am not too fond of that and neither is mom but dad is liking it. So today mom and I are going to go to the mall to get out of the house and walk around.

Speaking of walking I am getting better at it. Walking to bath is not so hard after all. I am also sitting up for small amount of time well I have to put my arms down to help.
Bye for now

Ahh Monday again 
Monday, September 10, 2007, 23:20 -
Posted by Administrator
I think that we are back to a schedule. Friday was a long day- I didn't like the car ride home. I made grandma Kar upset because I was so mad, but we made it home. Mommy is not suppose to lift me up because of her arm-she of course is lifting me. It was nice to have daddy home so much-I sure like to play with him.

I went for a long walk with mommy on Wed. before her surgery. I liked the stroller that day. I know that mommy hopes that I like it more often.  Talk to you all later, its a nap time.

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