Tuesday, November 22, 2011

Result of the Angio

So the angio came back as normal. What??? Now what. On a positive note that is ggod because it hopefully means he doesn't have vasculitis(inflammation of the vessels). It is really hard to treat and really hard to diagnos. We went to Dr.C here in IF after and he still wants us to forward with weaning him off some of his medications and started him on some steroids. The first few days were really crazy he was so hyper and was bouncing of the walls and furniture literally, plus he had six seizures in one day. They didn't last long so that is good. We did discuss a special diet with the Dr. for Bren to try and see if it helps. He was a little hesitant because of all the medication he is on and there isn't a dietician here in town to follow him. Sometimes it is so hard to go from test to test without getting any closer to finding answers. Bren is such an amazing kid, he is so strong mentally and physically. He has gone through so many tests and has been so patient for the most part. He loves going to his therapies but does get really tired and frustrated sometimes.
As for the other kiddos they are hangin in there. I think they are getting jealous at times that Bren gets a lot of attention and gets to go everywhere with mom or dad. I wish there were 2 of me at times so I could be with him and also with the others. Jordan just turned 10 crazy I have a 10 year old where does the time go.
I am so thankful for friends and family. I know I would not be able to handle the trials that are given to me. One of my dearest friends has endured trial after trial and still has a smile on her face and has the patience and faithfulness to keep it all together and be so strong and close to her Father in Heaven. I wish that I had as much faith as she does. I am truly grateful for her and the example that she sets for me. Being busy with our families we don't see each other very often. I am so thankful to have her in my life she has dropped everything to come and sit with me when I am having a hard time. I know that I have such wonderful friends and family in my life that will and have done that for me. I hope someday I will be able to return the favor and show how much I appreciate each and everyone of you. God bless you and I hope you all have a very wonderful Thanksgiving.

Saturday, November 5, 2011

Our adventures to Seattle

So as most of you may have heard we went to Seattle Children's Hospital in hope's to get a second opinion and that they would miraculously have a cure or treatment plan for Brendan. Well sad to say but no such luck. Hey at least I can say we tried and are trying to make sure we are doing the right thing and don't have to look back and have any regret's for not trying. We did get a very thorough evaluation and have been told to get a possible sinus biopsy in hopes that that may give us any answers.
After returning home we met with our neuro doc and he gave us the referal to the ENT specialist. He did not do a biopsy instead shoved a q-tip up Bren's nose(poor guy). Wasn't expecting it to be that painful. He had a mini ct done and found that he had a sinus infection.
Next week we head to PCMC again and we are going ahead with the Angio. We are really nervous and scared for that, but hopefully that may give us some insight of what happened and is happening. We will then most likely start on immune suppressants since he has an increase in his antibodies which means he has an over active immune system that is causing harm to him and may be contributing to his seizures and stroke. If he doesn't show signs of improvement then he will be started on steroids, and again if that doesn't work he will be sent off to get a brain surgery evaluation. So we have a stressful and tough road ahead of us. While researching for help on the epilepsy website I ran across a new procedure/surgery for epilepsy patients and hoping that this will be a better alternative. So keeping our fingers crossed and praying for the answers we need. Thank you for all your prayers and kindness. Lots of love the McDaniels