Dr Luthra

Katie had an appointment with her pediatritian today. All is well and she is able to go and have her MRI scan done on February 11th. She is still waking in the night with headaches and leg pain but it is not as frequent as they used to be. That is a good sign. It is nice to see that change. She did tell Dr. Luthra that she was still getting the headsaches. I am so gald that Katie is getting old enough to be able to say how she feels now. Hopefully pretty soon she will will be able to voice her pain and frustration instead of lashing out. That will be a huge step forward.

Katie update

Katie has been doing pretty good after sugery. We have had some issues with headaches and leg pains yet but the doctor said we have to wait about a year to see if those will be resolved from the surgery. It is frustrating, especially when she wakes up not knowing where she is or what she is doing. Almost like she is sleepwalking but in pain. We have an appointment in Madison for a follow up MRI on February 11th at 8:30 in the morning then  meet with the doctor afterward. She is a strong little girl. I hope the leg feels better soon because she does limp on her right leg when it hurts.

Hospital

Well it has been one long road for little Katie. We have been in the hospital for a couple of days due to some very severe headaches that brought us to the emergency room in Madison. She is such a little trooper. She takes everything in stride. Even being in pain the little girl wants to play.
The Doctor has her on Oxycodone every 3 hours and morphine every 3 hours to keep the pain away and to stop the pain from breaking thru. The surgery is still scheduled for October 2nd although the doctor thought about moving it up but didn't want to do it that way because he wanted to be able to take his time and make sure he got everything done he wanted to,. He was when you do emergency surgery you just get in and get out, if it is scheduled you can take the time to do it right.
She is doing better so all of you prayers are helping our whole family and we appreciate it.

Katie's diagnosis

I am writing to let you all know that Katie needs to have brain surgery. They have to redo the decompression surgery she had done last year. The MRI scan showed that her brain again was under a lot of pressure, and that the fourth ventricle was probably blocked again because there is no CSF flow between the brain and the spinal column. Her brain is under a lot of pressure which is making her left side act up again and causing her left eye to have the nystagmus bag and causing a new symptom, lazy eye. She has marked weakness on the left side of her body and she is in a lot of pain. She still has those darn headaches and she also has started drooling. I hope this will be the end of her surgeries. We have the best Doctor for her now as far as I am concerned. Dr. Iskandar is a godsend. He has been there for us when we have needed him and has listened to us. He has taken all of our concenerns into consiteration and has not blowen us off. This has been the first time we as parents have been given the opportunity to talk on outr daughters behalf. I would recommed him to anyone who has a child with ACM.
So Please Keep Us in you thoughts and prayers and I will keep you updated with my thoughts and Katies progress.
Laurie

Sorry I haven't kept you updated recently, we have had a lot of things going on here. Katie's appointment for her EEG of the brain because they think she may be having siezures, the CINE MRI and the full brain and spinal column MRI are set for this wednesday August 26th in Madison. Dr. Iskandar will be paged once Katie wakes up and he will go over the results with us unless he is in surgery, otherwise we will have to stay in Madison at the RMH to have an appointment with him the next day. He does not want to wait or have a phne discussion about the results because he has a feeling Katie is going to need some sort of surgery again. I don't care if she needs surgery again, I just want my sweet innocent little girl back again, I hate seeing her suffer. She is in pain just about everyday with her legs or her head, her balance is off again, and her eyes are again going wacky. I do not like the way things are going. I do like how Dr. I and his Nurse Katie are taking care of my Katie. Thank you to everyone that has recommended them to me you are a godsend. So please keep our family and Katie in your thoughts and prayers. I'll keep you updated.
Laurie

Well it is the night before Katie's appointment and I am nervous and excited all in one. I want to find out what is going on with her, but I don't want her to have to endure more surgery or have invasive tests done. If it will help find out how we can make her feel better I am all for it. This poor little girl can't even play hard without having to pay for it later. Her left leg really hurts afterwards. I will post an update after we get home tomorrow. Love all of you and wish Katie luck. I know she feels the love from each and everyone of you.
Laurie

The insurance has approved us for one visit to see the DR. in Madison for a second opinion but little do they know that if we like him we will be going down to see him all the time. I'm tired of Dr's not knowing what they are talking about. This is my little girl and I will do anything to get her the best treatment. They do not allow you to have just a title 19 anymore so you have to jump thru hoops to get to a Dr. that you need for your child. I do not like the HMO system you should be allowed to see anyone you want no matter if they are in your network or not. Come hell or high water Katie will be seen by a Chiari specialist.