.................................Decisions, Decisions, Decisions

Some of you may already know what we are up against from chatting on the phone, but for those of you that don't know here it goes:

We went to Boston again on 11/20 & 11/21. We met with 3 doctors 1 was genetics again and all the tests weren't back due to miscommunication. (Who would of thought can anyone get anything straight this day in age?) Then we where off to meet the orthopedic surgeon. Well let me tell you Dr. Spencer was TOTALLY amazing and the amount of time she spent with us was a total pleasure. She def. didn't make us feel rushed, she explained what the surgery is, what will happen, what can happen, what recovery will be like. Then turned it over to us for questions. Rob pretty much kept Zachary busy while I asked questions. Just when you think you have all your questions wrote down more keep popping into your head. Anyway, she said the surgery is needed but its up to US as to when we do it. What a awful feeling that is.......and of course we can't agree on a time frame. She said its not needed immediately meaning like now or else, but its needed. Rob seems to think we should wait because he will be older, he will understand more, and we can keep him down for the 4-6 weeks they are talking for recovery. I seem to think we should do it more sooner than later. My reasoning: he is 44 lbs now and with a 10 lb cast I can still maneuver him, if you do it when they are younger maybe he wont remember it as much, I am scared all the time that he may have a fracture/break, and I think if he is going to miss school he should miss kindergarden over any other grade. So we left there with no definite answer, but to talk it over and call them back. I almost wish they would of just said we are doing it on such and such date.

After that appointment we went to the hematology/oncology dr and she wants to try a experimental drug on him just before he has the surgery and for a couple months after. She is hoping it will help with the healing and lower his pain tolerance level. Yes he is like his mother no pain felt. And with that happening he is not letting his body/skin tissues heal properly.

SO after that very long morning of appointments we are at this point:
1. Deciding when to do the surgery
2. Preparing everyone for the surgery
3. And praying we make the right decision (which they keep telling us no decision is a wrong decision because he needs it done regardless.)


So when Zachary has this surgery he will be having Fassier Duval Rods placed in his Femur & tibia, a bone graft, and biopsy's of the tumors. He will be in a spica cast for 4-6 weeks also which means homebound for all of us so please keep us in your minds when this happens to stop by and see us. We will need distractions!!!!!!!

And possible best of all in Zachary's eyes:
HE MIGHT BE ABLE TO PLAY BASEBALL AGAIN!!!


So what is all of your opinions if you where in this situation? Please leave comments to let us know because we have been asking everyone we know and then we sit and talk it over and add to our pros/cons list.

..................................A little late but better than never

Our family on Halloween. Zachary was Handy Manny, and Marissa just a soccer player. Good thing it was warm for her to be in shorts.


Zachary cleaning out the pumkin at Nonnies house.


Zachary trying to catch the donut on the ring during his school Halloween party




Handy Manny!!!!!!!!!!!!!!

.................................Finally some good news!!!

Yes we got the first bit of good news today. Zachary's eye surgery was good, he is healing good and best of all. His vision has improved 1 notch so far. The Dr. seems to think once it is totally healed he will have a more significant improvement. Thank God we have some positive vibes and so happy. He has to still have drops in his eyes 4x a day but thats to help prevent infection & to help it heal. No patch for now which made him happy. The drops gone would make him real happy, but 1 thing at a time if you ask me.

On the other note, Marissa is preparing for a play here in Auburn. They will have performances on the first weekend of December at the College's craft fair and at Casey Park on New Years Eve for the family thing they do. She is a barbie doll (fits the roll perfect. LOL) I believe the play is free at the college and if not its a small donation I believe. I will get more info and post here for those of you with children that would like to go and see.

................................Surgery is complete

Ok. We got home last night a little late from Zachary's eye surgery and he needed me so this is the soonest I have been available to update.

Zachary did AWESOME. I couldn't believe this was the same Zachary in the beginning. He had to go from midnight to the surgery at 2pm without eating. All of you that know Zachary that we thought was impossible because he eats non-stop. Well he did very well and didnt eat only asked 2x if he could eat. When we got to the surgery center he was fine, they called his name he was fine, up until i had to take his clothes off. Then his anxiety set in. I was a little irritated with the anesth. guy because he was ignoring me when I was asking for something to help him relax. Well when it came time for Zachary to go he didn't want to be carried so they let him walk in his underwear becaue he wouldn't put the gown on. LOL

Then once in the OR he told them they wheren't putting the mask on his face so they just laughed and then waved the tube in front of his face to put him asleep.

They say the surgery went ok, but we will see today. He has a huge shield and packing over his eye and he keeps yelling he can't see. He did wake up this am with a fever so I am a little nerveous, but we go back at 11:30 for a follow up.

I am off to school this weekend so hopefully he will be ok with daddy & grandma's. I hate to leave him but I can only miss 1 weekend of school and if I am going to miss any I would rather it be when he has his big surgery.

I took a couple before pictures and when I get back from school I will post them and have a couple after pictures too.

..........................Thursday is fast approaching

Thursday is fast approaching and I have been preparing Zachary for his eye surgery. I think he understands this time what is going to be happening. He doesn't seem as anxious or atleast not right now Thursday may be a different story.

I am worried about keeping him away from food and drinks. His surgery isn't until 2 so thats a long time for a little guy that eats non stop to go without eating/drinking. I plan on taking him to the Y in the am to visit his old preschool and just spending some 1-1 time in hopes it distracts him.

Friday we will go for a follow up and then next week is very busy with another follow up on the eye, then we are gone to Boston for 2 days.

I will keep everyone posted on how the surgery goes. I am also going to do before and after pics of his too.

..........................School Pictures

Here are the kiddos 2008 School pictures.


Marissa has grown up so much I can't believe. She is getting prettier and prettier everyday. I guess its about time we put that lock on her door so she can't get out. LOL


I wanted to get Zachary's retaken because he was having a bad hair day but everyone told me no because thats Zachary every day. LOL

........................Lump update

Ok. I took Zachary to the Neuro in Rochester and as yucky as I felt I had just wanted to get home. Anyway, the dr. said the lump is either another cyst like he had before on his head, or a spot (tumor) like he has on his legs. He said not to be overally concerned at this point because its pretty small in size, and it doesn't seem to be bothering him. With everything else going on this is a back burner thing. Now that I am home and feeling better I don't think anything is back burner to me seeing it concerns my child. But I am going to bring it up to the Dr. in Boston at the end of the month and see what he says. I mean come on...we where just in the Dr. office not even a examing room. LOL I know not funny, but I am not to big on Strong's set up for Dr. offices. I guess this Dr. has 3 different locations depending on the day depends on what office he is in.

Other than that we have all been sick with the stomach/diahrea bug since Sunday. I got it Tuesday of all days and don't know how I made it to Rochester and back. I got home and was back in bed immediately. Today is a new day THANK GOD!!!!!!!! and I feel much better. Just a lagging headache but I can so deal with that.

School is good. I am nerveous because they posted our final information and to think thats only 1 month away already. Gosh where has the time gone. Oh well off to enjoy some quiet time before the daycare kids get here and maybe catch up on some reading since I did none yesterday.