New MRI appointment

We have a new MRI appointment on the schedule for March 10th. Since she will be 6 months old they will be doing it in Walnut Creek which is closer for us. She still has to be put to sleep but they are able to do it in the off site facitlity. We are anxious to get it done and get a follow up appointment with the Neurologist. She is sick right now and we started breathing treatments last night. Hopefully she will be better by this weekend as we are going with granny goose and the family to see Disney On Ice. We will post some pictures soon.

No MRI Tomorrow....

I was all excited that we had the MRI scheduled for tomorrow. I started to come down with the flu yesterday and then Jordyn woke up with it this morning. Since they have to put her out for it they won't do it if she is sick. I am going to call them first thing and see how soon I can get it rescheduled for. Sometimes I wonder if anything can go my way..... The kicker is that we probably picked this bug up from being at the hospital last weekend.

MRI on Monday

We finally got Jordyn scheduled for an MRI at Children's on Monday. Right now they are scheduling out at the beginning to middle of March but they fit us in on an emergency basis. She has to fast before the procedure which is going to be interesting. I'm wondering how a 5 month old is going to feel about not getting her bottle..... She is now eating baby food and gives us some of the funniest faces when she is introduced to a new food. As you can see from the picture below she wasn't too fond of pea's. So far her favorite is bananas.....
I'll update the blog when we know the results of the MRI. We have a follow up appointment with the Neurologist on March 3rd.

Health Update

Wow what a week it has been. Last Wednesday Jordyn had another one of her episodes and my mom took her to the ER in San Ramon. After being there for 4 hours they sent us home and did nothing. On Friday Jordyn had another episode and it was a bad one. It was the first time I actually freaked out. I was on the phone with Children's Hospital and they told us to bring her in. We got there and they admitted us so they could run some tests. She had a CT scan, another EEG and they started running some blood work. They put us in a ward with some really sick kids and it was a long night that consisted of no sleep. We spoke with the head of Neurology in while we were in the ER and she talked to us about some of the things they are looking into as far as a diagnoses. It is going to take some time to figure it out but atleast we are heading in the right direction. The next day the Neurologist on call told us they wanted to keep us another night but we weren't happy being there. We didn't want her to get sick from one of the other kids. The night before the Neurologist had said they would be letting us go because there is nothing else they can do right now. The other kids were so sick and it wasn't fair to keep her there and risk her health. They ended up letting us go later that night. The CT scan showed there is some extra fluid at the front of her brain but that it isn't anything to worry about. We are hoping to get the approval from our insurance to get an MRI as soon as possible. It is truly very stressful for us but we are doing everything we can to be strong. When she isn't having an episode she is just the happiest kid. We will keep everyone up to date with whats going on. Here are some pictures of her at the hospital. She had a good time and didn't know what was going on.

Her feux hock after her EEG

Watching her TV in her crib
Relaxing with her IV in her hand.

Children's Hospital Visit

Yesterday we took Jordyn to Children's Hospital in Oakland to have an EEG and to meet with a Neurologist. We had the EEG at 10am and then had some lunch and went to our 1pm appointment with Dr. Birmbaun. He review the EEG results and said they looked fine. We told him about the episodes where she wakes up screaming in pain and then goes on to vomit and the it results in her being tilted to one side or the other. He checked her out and said that developmentally she seems to be right on target which was good but she still has a little head lag when pulled up by her arms. He did notice the nystagmus where her eyes will twitch but that doesn't happen all the time. After going over everything he said that he hasn't seen anything like this before. He now wants to do an MRI and some more blood testing to see if that shows anything. In order for her to have an MRI they have to put her to sleep so that they can get good pictures. We now have to wait to get approval from the insurance to do the testing and then we will go from there. He wants to see her back in 3 months but will call us once he gets the results from any of the tests. I took the picture below during the EEG, they placed 22 electrodes on her head and then wrapped her all up. She did really well and they were able to easily get the test done.
I have to say that the people at Children's are great. The whole experience was a little tough for me knowing that there are enough sick children to fill that hospital. We got to meet some great people and their children. As a mom I can't imagine what some of these parents are going through with their sick children. It really opens your eyes and makes you grateful for what you have. I am so lucky to have such a wonderful little girl and I love her more than words can explain. I hope that we are able to go through all this and get some answers in order to make everything OK. I'll keep the blog updated as things happen.