Our 2nd visit to Primary's

May 29, 2011

We went to SLC on Friday to see the rehab Dr. and the neurologist. It was very comforting meeting with Dr. Gooch. The Np and she was very hopeful that Bren should be able to get movement with therapy and they are going to follow his case. I am so excited for that. They come up to I.F. every other month so that means we don't even have to travel to SLC for her appointments which is a bonus.
We met with Dr. Barkan and I really am confused as what to do. She wasn't very organized and didn't listen to everything that has happened and would move from one thing to the next before we had a chance to inform her of what all has been going on with B. She looked at his MRI and read the report and said she would like to do another one with epileptic protocol. She is not convinced he had a stroke and thinks it could be siezures causing the problem. She wants to have him admitted for 5 days and do an eeg study and take him off his meds and monitor his brain waves.
I called my neurologist in I.F. to ask his opinion and now I don't know what to think. He has been so good to inform us of everything and can explain things in such a good way that we understand. He doesn't think it is necessary to do those tests because he doesn't think it is just seizures he is having. He was very good to answer every question I asked him and was really patient with me. I called him Friday night and he talked with me for at least 45 min. Then even called back to tell me lets do an eeg to see if his meds are working. So I really respect his opinion and know he is doing all he thinks is necessary. So what do you do??? That is the big question. I am open to your opinions so please let me know.
Back to Dr. Barkan, she was really good to tell us that there is nothing wrong with getting more than 1 opinion and to keep getting them until we are satisfied or get the answers. If any Dr. gets upset with this then find a new one because it is your child and you just want to find out whats wrong. She said she's not going to take over but do her part in trying to figure out what is going on and if she can't then she will refer us else where i.e. the mayo clinic or Cleveland, Seattle or any where else she thinks could help us. So that is nice to hear from her. But do I really want to put Bren and our family through all that with the risk of not having an answer? I do and I don't.
It would be nice to have someone tell you what your suppose to do and make these tough decisions. So any volunteers lol. So there you have it my crazy weekend. I am glad he is as healthy as he is things could always be worse.

More updates

We went to the neurologist in town today and were told the tests in SLC came back normal. He had gotten a postive on his ana at eirmc and they repeated the test in SLC and it came back negative. We are waiting on one more test result and then we just wait and see how he does. Kinda crazy, so they are more confused as to what is going on. They have done all the tests that they can think of to do and still not an answer as to what is going on with him. We are in the process of switching his seizure meds due to the fact that he is so agitated and not himself. If he does end up having another stroke then we will go back to the Dr. at Primary's that ruled out Lupus and treat him for one of their diseases. He is doing pretty good with his physical therapist and a little better with me. Hopefully tomorrow we will get some answer's from the Rehab Dr. and other neurologist at primary's. Other then that we just watch him if he is having any signs of a stroke and if he has any more seizures. A little frustrated but hopeful that things will turn out.

I dislike the unknown

Today we went to the neurologist in town and he still thinks that it may be lupus. He says "I know he looks to freakin healthy to have it but there are some tests that can't rule it out and doesn't understand what else it could be." He says we may have to wait it out and see if it gets worse or develops more to get the evidence we need to find out what this thing is. He wants to switch his meds because he has noticed he is more aggressive and agitated. Which I pray this new one will get my loving happy go lucky Brendy back. Also that it will work just as well so we won't have any more of those horrid seizures. We also need to do .... you guessed it MORE BLOOD WORK. Good thing he is so tough and brave.
We went to our first Physical Therapy on Tuesday and it was great. We learned lots of things to work on with him. He was so excited at the office but when we got back home not so much and it was a chore to try and get him to do his therapy. I blame his meds for his stubburness. I found bribing is becoming my negotiating tool. Whatever works I guess. So if anyone is up for the challenge and would like to work with him for an hour a day by all means come on over.haha
I can't believe he is going to be 7 on Saturday. He has been on the countdown ever since it was 11 days out. I also have a long list from him. lol I think he is taking full advantage of his illness. Who could blame him. If only my pocket book was as compassionate.
He is wanting to go to school now that there is only a week and a half left. Personally I think I may stress out more if he does go for fear something will happen and no one will notice. But on the other hand it will be nice to not have to break up Sage and his fights like every 20 minutes. lol Now I know how my mom felt with my brother and I hehe. It was always Jake though I was just defending myself ;)

Amber this ones for you! The revenge on Tom.

Tom Swifty

Ok so you all remember Tom?  Well he was suppose to be Thanksgiving dinner then Christmas and then Sage's Birthday dinner. Well he didn't make it to Sage's birthday because of a mean karate kick he had.
I thought it was so funny that my boys were so afraid of a little ole' turkey. He would meet them at the door of his cage and try and peck their poor little fingers in their attempts to feed and water him. So finally after getting the door open he had a nice karate kid to greet them. I would watch out my window and giggle a little and yell words of encouragement to them. hehe That was one of the highlights of my day. I know you are all thinking what a mean mom laughing at their challenges.
Well I only laugh because it takes me back to my childhood when we had tom turkeys not just 1 but 4 and my lil bro loved to chase and torment them when they were just little guys and well they grew and decided to get revenge on not just him but all kids who dared to come in the yard. There were many times we were all yelling for help atop our swing set and my mom would laugh and laugh and finally come to our rescue.
Well the day came when I came to my kids rescue. I decided I would feed tom for them and he greeted me the same way he had my kids all these months. Only he had more than 1 karate kick for me. Needless to say he has kicked his last kick. I tackled that mean bird and drug him to the chop block and well in my attempt to do the deed he got away. So I chased him around the yard I finally got a hold of him ( he managed to get his kicks in) and this time I hog tied his legs together so it wouldn't be so hard to ketch him if he decided to elude me again. So I gave him one big swing at his throat and he jerked my finger right in the way. Yeah I chopped my finger and nicked his neck. I sent in my trusty helper Bren to get my knight in shining armor to come to my rescue. After 3 convincing tries he finally comes to my rescue. He finished ole' Tom off and helped with the skinning. I prepped him for the crock pot and well a few hours later we sat for dinner.
Well that mean ole' turkey thought he had the last laugh it was the toughest and most disgusting flavored bird ever! So I thought I would let Daisy have her long awaited meal and feed Tom to her. He was a bad egg through and through.

Our trip to Primary's

We went to Primary Children's yesterday and it was a relieving day. We found out that he doesn't have Lupus, MS, or ADEM. So that was the relieving part, but now we are back to square one what the heck is going on with him? They are sure that he had a stroke and now the question is why and what caused it. So we had to get more blood drawn and an echo to help us figure it out. We will be going back to Primary's on the 27th of May to meet with the neurologist and the rehab Dr.'s. Hopefully they will be able to figure this out. He was started on a baby asprin for a safety precaution against any more strokes. It was a long and worthwhile day. I am so glad at the news we received and Chris seems to be doing a lot better after hearing this(he doesn't seem as stressed out and worried) I want to thank all those who have been praying and offering us help in anyway they can. Without your love and support I don't think we could make it through this.

Physical Therapy?

So they think that it was a stroke that is causing Bren's hand to have weakness. I have been asking about therapy for him and they want to find what is wrong and get a diagnosis before we worry about that. I am not sure I want to just sit and wait. Why not get him into therapy now so we can be that much farther ahead and on our way to recovery?! Plus shouldn't you try and do some sort of physical therapy to help him so his muscles and tendons don't shorten? So I have been searching the web for any answers and haven't found any. But I have found some ideas of therapy that I can do with him. It is hard to get a child his age to do hand stretches like you would have an adult do. He complains and gets bored with it fast and says "I can't its too hard".
Tonight I went to walmart and got tennis balls, racquet balls, glitter/water filled bouncy ball, the game operation(which I never like because when I hit the little metal piece with the tweezers it would freak me out haha), play-do, craft sticks (to make a hand splint for night), finger paint, velcro mitts to play catch, and a hand weight. Hopefully this will keep him entertained enough and work to get his hand on the mend and go back to using it. If anyone has any ideas or suggestions please let me know. I have been contemplating on putting him in piano to help get those little fingers moving. Also I have read and learned that music is one of the only activities that really uses the whole brain.
His birthday is coming up here pretty soon so you know what he is going to get (right) besides tests and shots? Physical therapy toys lol. Hopefully he will appreciate them and have fun using them. I know he will he is such a sweet kid. He always and frequently says to me " mommy I love you so much your the best". He is my heart melter. He sure knows how to pull at my heart strings, I love that kid so much and it about kills me to see him have to go through some of these tests and have some of the side effects from his meds. B bear you are the best son a mom could ever ask for! Always stay as sweet and loving as you are.
We have our appointment to Primary's Thursday so hopefully we will have some better ideas of what the plan is going to be and what we need to do.