....................Boston day #1

Phew........what a day. We started off at the hospital at 8 am for preop appointment. Then at 10 we went to Orthopedics for a appointment there. It was there we were told Zach may not have surgery. His labs came back abnormal and his clotting factors weren't good. Which meant a couple of things: he can't have surgery because he could bleed out, or they could give him a shot of Vitamin K and redraw and hope they get better. So first they decided to just do a redraw then go from there. Well thank god because it came back ok after that. They are thinking it was a bad vial or something that caused it to come back abnormal. It was a rough morning for Zach because it was taking so long and he just wanted to get to the childrens museum. Finally we got to the museum around 1:45. We spent about 1 1/2 hr there because it was so crowded and Zach was just not up to waiting his turn for everything. Luckily we only had to pay for 1 admission instead of all 3. The hospital gave us 2 complimentary tickets.

Once we got back we sat in the tv area and met a real nice lady & her daughter. They are from Albany orginally but living in Japan d/t husband being in the air force. We chatted for many hours then went to dinner with them. Then we came back exchanged FB and showed pictures and shared some great stories & traveling experiences. It was nice to be able to talk to adults while the kids played then off to bed for Zach early.

Well I need to go get some shut eye since we have to be at the hospital at 7 am for his admission in the am. So up and at 'em early in the am. Looking forward to the in laws & Marissa coming out on Friday & Saturday. Possibly a friend of Zach's on Thursday if he is feeling better. This time around we don't feel so alone and thats a great feeling. I really like this dorm style living while we are here because the friendships we have made already are great. And to know we are not alone with having a child with some medical issues makes it a little easier too.

................Boston Bound

We are Boston bound for Zacharys surgery. So please stay tuned for updates daily over the next couple of weeks on Zachary's progress. This weekend was very busy for the little guy making his visits with grandparents, friends & neighbors. Everyone has been so supportive and wonderful to him and we want to thank everyone for making him feel so good. His anxiety levels have been really high the past couple of days but with some reassurance I have been able to get him back to his normal self. He has packed his bag with some great items to keep him busy, or feel better. He has his LIPS from Mrs. Brazee, class picture of all his friends, a magnet from his friend Sampson (golden retriever next door), some new books to read & color, some cookies (he already got into them. LOL) and his new build a bear DOG to sleep with. Our schedule this week is: Travel on Monday, 8 am & 10 am appointments on Tuesday and hopefully is the weather is cooperative on Tuesday we will take him to the childrens museum for the afternoon. Then surgery is scheduled for 830 on Wednesday. Once he is out and in his room I will update as to the exact floor he is on for anyone sending him a card. Thanks again for all the prayers and support.

.....................Almost all set

Well this week has been a busy week and we are almost through it already. Zachary had a couple appointments for clearance in order to have his surgery. Cardiologist said everything is perfect and no problems what so ever. He will not have to go back unless something terrible happens. They also don't believe the high BP is cardiac related. He thinks its kidney caused. Thank you god for some answers and no new issues. Zach is handling everything very well so far this week. Next week might be a little different but thats to be expected with what he will be going through.

Marissa finished her play she was in All Shook up. They did AWESOME. I am so proud of her because i know I could never get up on stage and do that stuff.



Rob got a call from his urologist after he had his 1 week follow up xray appointment and it wasn't good news. He said the kidney stone is still there and not changed in size. So in other words the lithotripsy did not work. So they have to go the hard way and he is not a happy camper. Dr said it can wait until we get back from Boston.

Please keep checking this site out through the next couple weeks. I will be updating daily on Zacharys status.

...............Rob and his kidney Stones

Well today Rob finally is going to take care of his Kidney Stones. He keeps getting them but just takes some pain meds a day off from work then deals with the discomfort till it goes away. Well a couple weeks he had a bad attack again and has finally decided to have them blasted. Thank god because there is nothing worse than seeing him in pain and so sick from them. They say it doesn't hurt and he will be up and going shortly after.

Zach is holding his own these days. Taking his medicine like a champ and so far the seizure activity has been kept to a bare minimum and i mean bare minimum. I think since they upped his medicine about 3 weeks ago he has had 2 episodes that I am aware of. Not sure if he has had when not with us. He has not been telling us either again and that worries me. I really want to know so we can have accurate documentation to know how active we all need to really be.

Next week is really busy for us seeing its the week before his big surgery again. He has a cardiologist appointment & eye appointment. On top of his 1st communion meeting, hair cut, and packing for almost 2 weeks.

Marissa has her play this weekend "All Shook Up" I can't wait to see it. They have been working so hard and had a great tech weekend building/painting the set. It went much faster than expected for building it. I will post some pictures once we see the show.

..............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.