Sunday, April 17, 2011

To update/inform those on my B bear

The past few weeks to months we have been seeing some strange things happening to B's poor little body. The first one was when I posted on FB and we thought he had CO2 poisoning back in February. He had a bright light in both eyes and was not able to focus on us or really even respond. When he was talking he didn't make any sense. Scary!!! He did get a headache afterwards and has had a few more episodes similar to that but with out the lack of focus and speech thing. They would come every couple of weeks and now they are more frequent about every 3-5 days, but without headaches and the light seems to be taking over most of his vision. Luckily they only last about an hour.
Well then I noticed him holding his hand funny every once and a while and just ignored it :( Now the last 3-4 weeks I have noticed it all the time. I mentioned it to Chris about 2 weeks ago and it kept getting worse. As of now it has stayed the same for about a week. He can't open his had all the way and has a hard time gripping. His writing is getting worse no matter how hard and how much time he takes on it. He is right handed(RH) and now only uses his RH to write with. He almost always has it in a fist behind his back or in a claw like position. When he runs it doesn't sway next to his body like his other, it drifts behind him. Even when he picks up his brother his hand is usually closed and doesn't support him if he is wrestling on the ground he now almost always gets up with the LH.
So after going into the Dr. Smith he decided it was time to see a neurologist. So we waited an entire long week an a half for the appointment, 2 MRI's, an Eeg, blood work, chest x-ray, overnight in the hospital and a spinal tap later. Still unknown what is going on with this little guy. Amazingly he loves to go to the Dr. and wasn't ready to leave the hospital after just 1 day. He said I can't leave mom they are bringing me dinner tomorrow. lol I love that kid he cracks me up. I do have to add that he did amazing with the MRI's and EEG he laid completely still for 35 minutes for each test, so a total of 1hour and 45 minutes. The blood work was nothing he watched them as the tubes were filling up and the spinal tap well he just shocked everyone. He held so still for as painful as it was he cried out a little ouch and a couple of tears and that was it. Then he had to lay flat no pillow or anything for an hour.
You tell me how many 6 year old's you think could do this. I know he did have help from his father in heaven and I am so grateful for the priesthood and for those who hold and has given our family blessings this past week. I do also feel the love and support from our family and friends and am so thankful to them. We would not be able to endure this without all of you.
Again we have to wait for more results. Argh that is so awful I want to know like yesterday. I guess I need to practice my patience.
So some of the test that we have done has given us little info to research. The MRI's showed a lesion on the left lobe of his brain, At first they thought it looked like a non cancerous tumor or an inflamitory infection called ADEM (google it if you want understand better), but then then 2nd one showed it was an old lesion and has calcium build up. This means it is an older lesion. The question of the day is how old a couple of months or years what?! Good news to that is it is most likely NOT a tumor. YAY!!! But could it be from a stroke or ADEM or maybe MS(which they think is unlikely also but a possibility). The EEG did show that the left side of the brainwaves  are functioning slower? Not real sure what that really means?!? The labs and spinal tap as of today have come back normal but there are still a couple of other tests still pending. The big one we are waiting for is the MS panel. Yikes!!!
The plan for Thursday is to go over the other tests that come back and further findings from other specialists on the MRI's. We may need to do a CT. we will do future MRI's to keep an eye on things. Also if it does turn out to be ADEM we will head back to the hospital for a few days and put him on a really strong dose of IV Steroids. We will most likely do physical therapy, but first they are focusing on a diagnosis.
So that is the latest I would ask for you to please keep this little guy in your prayers and know that we love and appreciate all of you. I will try and update this as soon as I can and after his appointments. Oh and please don't feel sad for him he is so excited to go to the Dr's and really doesn't act like anything is wrong. You wouldn't be able to notice especially if I didn't let you know about his arm. I asked the teachers and other family if they have noticed it and nobody did. So please keep a smiling for Brendy bear, because if you ever have seen him he is always all smiles and it is the most amazing smile it warms your soul and melts your heart. That pic only does a fraction of justice. Love to you all and wish your families well.


  1. Ahhh.....Joy. I am so sorry. We really need to keep in touch with each other a little better. You will all be in my prayers. Brendan truly is the essence of happiness and sweetness. Let me know if you are planning a family fast or anything of that nature. I will do whatever I can for you guys. I love ya tons!

  2. We love that little guy! He will get better- after all he is going to be our son-in-law!
    haha. We will keep you guys in our prayers.

  3. Joy thanks for letting us know what is going on! I am so sorry that your little guy is going through some major things but it sounds like he is doing amazing job. We will keep your family in our prayers and thoughts. Please let us know if I can do anything else!

  4. So glad that he's such an awesome trooper through all this! I'm not sure even I could hold still that long!!! He will definitely be in our prayers as well as you and the rest of your family! Love you!!!!

  5. Wow Joy! I'm so sorry he's having problems! We'll pray for him too. Keep us all posted.

  6. We will be keeping you all in our prayers too. Hope you find some answers soon. Not knowing is the worst. Your little guy sounds AMAZING!

  7. Wow! I can't believe all the stuff that's been going on with your family lately! I'll pray for your little guy too!

  8. Thanks everyone we really appreciate all your love and concern. I lives sure aren't boring that's for sure. But I think it could always be worse. It is scary but you need to take the good with the bad and not let it break ya. Hope all is well with everyone.