Lupus Foundation of America

Lupus Foundation of America: "- Sent using Google Toolbar"
So I have posted this link because now the Dr. thinks it is lupus. I am not sure how I feel about it. I don't know a whole lot about Lupus. The plan is to get more blood tests done and then off to Primary Children's next week. So at least we are getting closer to some answers and knowing what we are in for. We went and some of his blood drawn tonight and he is going back in the morning for a glucose test due to the fact that he has gained 10lbs in a week. Crazy because he isn't on steroids or any other kind of meds that would make him gain weight. I guess if it is lupus it is a mild case because usually children are so sick and have been so sick for a long time before getting the right diagnosis. So it is a blessing that we had these things happen to him. They are thinking that he had a stroke and his hand will be affected permanently and he is at risk for having strokes in the future. The Dr. said it is kind of crazy to say it is mild where he has been having strokes and seizures but it could be a lot worse. So I guess I am thankful for that. As of now I guess I don't know how I feel it is like a nightmare and is not really happening. So maybe in the next few days I may have a break down again. It seems to take about 3 or 4 days before it hits me. Which is good because Chris has a hard time at first and is somewhat coping by the time I have my breakdown.

We wait some more

So the Dr. called and canceled B's appointment, because they haven't gotten the all the test results back. So yes a whole entire weekend. Now I'm getting a little frustrated and anxious. I can't handle the unknown for very much longer. I want my baby to be getting better not waiting for things to get worse. Patience patience patience I need to practice I guess. Hopefully they will all be back soon. Our next appointment is scheduled for Thursday and if they get the results sooner they will call us in.

Trip to the ER

So in my last post I mentioned the blood patch. Next time I will take the blood patch over the ER visit. So around 2:00pm yesterday Brendan started seeing a bright light again and was not making sense the he couldn't look at me or focus on what I was saying. Then his head started twitching to the right and was not responding to me at all. Thank goodness Chris was home!!! I called 911 and he called our sister to come get the other kids. The emt's arrived so quick and while explaining to us what a seizure is he started having the most awful seizure his little body was jerking all over and it lasted 15 long minutes. We decided to take him to the ER and during transport he had another then on arrival he started another and continued to have at least three more, one right after another. They were giving him vallium and ativan 2 doses of each and finally ordered in a seizure medicine. After things seemed calm and we got moved from the trama room it was 6pm. He was sound asleep he would lift his head open an eye and then go back to sleep. I think he was just makin sure we were still there. Then about 8pm he was awake enough to eat a popcycle and respond to our question he was really confused and kept repeating himself. He new where he was and wanted to go up to the peds floor so he could have the "fun" bed. His meds made him really goofy and loopy so it was hard to keep him still and quiet. Finally at 10pm then sent us up to peds and the nurse didn't like how his IV looked so she untaped him and adjusted it and boy was he ticked. He was in a lot of pain from it and kept crying for most of the night. Poor Kid. We made it through the night and he was such a sweetie, he wouldn't let me leave his side. Then the morning came and he was pretty good until the Dr. came and told him he needed to get up and walk around to see if his headache would come on when he stood up for a while. Then he was a total different kid. he was kicking spitting yelling and hitting me. He informed us he was never going to get out of bed and walk EVER! So I said fine and let him calm down and in about 5 min. he was overly lovey he was kissing me and hugging me and I was the "best mom ever". Then he wanted to put his feet on me and in my face and on my lap. Then he would break out into tears and say he was so sad just sad and to leave him alone. It was so hard for me to see my little sweet boy go through so many moods in such a short time and they were so drastically different. Finally he had to go to the bathroom and wanted to walk into there and not us the urinal. So now that it was his idea he was fine to start walking again. He was doing really well and then it was time for his CT and it was noon and he hadn't had any lunch and had just finished his IV of meds and already agitated, you can imagine how that went. We did get him calm again and he laid perfectly still even when they messed up and had to move him to a different room and use another machine. He was my b bear again. They finally let us go home at 3:30pm so we got the other kiddos and went to grandmas for Sagey's birthday party. man what a week. I hope this helps feel free to email me or post comments and I will try to respond as soon as I can.

Postponed until Friday

So the Dr. doesn't think we will have all the test ready until Friday so another long day to wait.
Brendan has been doing pretty well. He still is having pain in his back from the spinal tap.Yesterday he went to school and got a pretty bad headache so we brought him home and he was fine as long as he was laying down. Again today he has a bad headache so I talked with the Dr. and his instructions are to lay flat on his back and drink lots of liquids and caffiene. Yeah so how am I suppose to keep a six year old in bed all day let alone with giving him caffiene. Crazy! Wish me luck. Hopefully it works so we don't have to give him a blood patch.

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.

A day in the life of...

I want you all to please check out my dear friends blog. she is such a great and caring person and her family is going through trials that no one should have to. Please please voice your opinion and stand up for our soldiers!!!
I love you Sadie you are amazing. Please tell Seth thanks for his devotion to our country and that we love and miss him too.
A day in the life of...: "- Sent using Google Toolbar"