..............Neurologist appointment

We went to the Neurologist on Thursday 1/20/11. We spent well over 1 hour in the room with 2 doctors. Zachary had to explain what he was feeling, we as parents had to tell our side, and they reviewed the eeg notes and agreed they believe it is seizures but what type? How often? How long? Those are all the questions. Then of course the question how should we treat this? Well they upped his medicine from 1/2 tsp 2x day to 1 tsp 2x a day. Also his Vit. B6 was upped to 2x a day. B6 is suppose to help with the side affects from the medicine. They also, want to do a 24 hour EEG and said it would be a couple weeks before it got scheduled since we would have to go to Rochester get him hooked up and be there for 24 hours. So I thought kick and asked if it could be coordinated with Boston since in 3 weeks we will be in Boston for his Surgery. They are going to work on that they said because it makes sense. Thank God for some ease on some of the tests/appointments we have to go through.

Well since he has been on the medicine he has had 2 episodes that he has told us about. I think he had 1 the other night when he came back from his grandparents but he says he didn't he was just sad he couldn't get this tractor from the tractor store. So in 1 week only 2 so far. Well its better than the previous weeks without the medicine. I am just scared because once his 24 hr EEG is scheduled he has to be off the medicine for 7 days prior to it. I sure hope that doesn't make for a long week for him. He will be under enough stress at that time.

We are off to the nephrologist on Tuesday for that follow up and lots more questions on why the kidney size difference. Please keep us in your prayers.

.................Whirlwind again

Our life has been uprooted yet again. Zachary has been having headaches and very concerning. We spent a whole weekend of him having headaches, being very miserable (unlike him), wanting to sleep, and sucking down tylonel/motrin to try to relieve the pain. Well nothing worked and I didn't like his behavior so i took him to the pediatrician. Dr. Anwer listened and seemed concerned. He ordered a EEG to be done, and made a appointment for the cardiologist since Zachs blood pressure had been so high. (When I say high I am talking 140's over 90's).

We went for the EEG and Zachary did awesome considering he had to sit totally still. They did the cap EEG test instead of all the leads attached to his head. If I can manage to get the pictures off my phone to the computer I will post them.

Dr. Anwer called today with results and he said it was very abnormal. He is definitely having seizures and needs to get to the neurologist asap so they will be calling for an appointment. He also said he will need to be medicated for this.

As a parent, I am scared, clueless, upset, and confused. Why? Why us? Why him? I know these are some questions that will never be answered, but in the mean time make it even more difficult for all of us. I will keep everyone posted when I hear more.

........................Surgery Scheduled

Phew........the Holidays are over and now we can breathe a little. Well for a couple weeks atleast. Zachary is scheduled for surgery on 2/23 to replace the rod in the femur and bone graft. We will be traveling to Boston again for the surgery. We were lucky enough to get into the housing they have at the hospital. If not I really don't know how we would of afforded an almost 2 weeks stay at a hotel in Boston. Thank you God for answering some of my prayers. We will be leaving on the 21st because the 22nd we have a 8 am appointment then a 10 am appointment. Marissa will be staying here at the house with Nonnie Judi. Then at the end of the week Papa Tony, Nonnie Judi & Marissa will come to Boston to see Zachary.

Other upcoming issues is his appointment with the nephrologist for a follow up. I will be calling them before hand because he is having awful headaches and I am really worried. We don't need anything to hold up his surgery. His BP is not getting any better, but the meds he is on for add/adhd are helping out ALOT. He has been able to focus more and is actually taking to reading now. His teacher complimented him on his attentiveness and he was so happy to tell me about it. So I guess it really wasn't just pent up energy from not being able to do as much as he would like to.

Marissa was released from the Dr to go back to all her activities. So we are off and running to play practice 5 days a week, dance 2 days, and softball gym time in between. She is busy, busy, busy. Not to mention my taxi is running FT again now. LOL I am just glad she is doing something so I really can't complain.

The stomache bug his our house over New Years weekend. I had it really bad for 3 days and Marissa had it for 2 days. All the daycare kids/families all had it too so I knew someone in this house would get it, never thought it would be me since I am usually the healthiest. Oh well I guess I needed it for once. (Didn't help me lose any weight though. LOL)

I will keep everyone posted as time gets closer as to whats going on and an address to send him a card if you want to.