Santa Claus 
Friday, November 30, 2007, 18:38 -
Posted by Administrator
Mommy and grandma Kar took me to see Santa on Wednesday. It went pretty well, I sat on his lap and had my picture taken. The elf's had problems with the computer so I had some extra time with Santa. We had to retake the pictures and I did not want to sit on his lap again so mommy had to take pictures too. While we were waiting for the elf's to fix the computer grandma Kar, mommy, Santa and I were singing Rudolph the red nosed reindeer with Rudolph himself. He made me laugh.

Mommy and daddy have to take me to the cities again on Tuesday to get my AFO's, not to sure how I feel about that. My gait trainer arrived and I do not like it very much now but mommy keeps telling me that I will get use to it again. I sure hope so.

Great grandma came over yesterday and brought a pretty red and green plant for Christmas. Tonight grandma Kar is going to babysit me so mommy and daddy can leave for a bit. This will be our third time together alone and we have so much fun with out the parents.

I can't remember if I told everyone about my doc appointment with the bone and muscle doc. So here is a quick update on that. I do not have to take anymore medications. I don;t have to use botox either. Dr Tanaguchi says that I have mixed cerebral palsy. That makes it hard for me to sit, stand, walk and to control the movements in my arms; but mommy and daddy keep helping me lots so I can move better and keep flexibility.

Saturday, November 24, 2007, 14:44 -
Posted by Administrator
Happy Thanksgiving everyone. We had our first Thanksgiving. Our bird was bigger than me by 4 lbs. Mommy took pictures and I will post them, they are of me and the bird. Supper was very good. Grandma Patty and Grand Harp came over to eat and play.

My contrast study came back all perfect we just got the letter from Dr. Aru. My appointment with Tamaguchi went great too. He said that I am not a candidate for any anti spastic medications or botox. I  have tone and it is a problem but I can relax it. I did however, get fitted for AFO's and we will go back and get them in a couple of weeks. We are still waiting for the gait trainer.

Pictures will soon follow. Bye for now.

After the contrast study.... 
Sunday, November 18, 2007, 03:17 -
Posted by Administrator
Well the trip to the cities went pretty well. The test upset my belly but I guess that happens when they put vials of fluid into your intestines. The equipment was kind of scary but mommy held my hand the whole time and daddy was there talking to me too.
I still feel a little under the weather, my tooth hurts too. Very tired.
I then go back to the doctor on the 21st to meet Tanaguchi the bone and muscle doc.

My gait trainer was approved and we are now waiting for it. I am exited to start to use it.  I am going to bed now I am very tired and still don't feel well.
Bye for now.

Doc Aru 
Saturday, November 03, 2007, 05:32 -
Posted by Administrator
Hi everyone - todays doctor appointment went pretty well. Doc Aru said that Mom and Dad are doing everything that they can for me to gain weight the next thing would be to place a G tube and we do not want that.  Guess what I did gain a little. Doc Aru wants me to come back and have a contrast study done on my intestines to make sure that I have no strictures in there due to my surgery and having NEC. I sure hope that everything is fine because I don't want to have surgery again.
The car ride was okay, my new car seat made it a little better also the ativan helped too. My tooth is bothering me it seems to be right there ready to pop out then it seems to move back up into the gums. So it is sore, I sure wish it would just come out so I can use it. Well goodnight everyone.
Here are some Halloween picts..... 

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.....

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