..........................Just a little video of Zachary

Here is Zachary showing his improvements.

...........................Just why?

Just why does the school systems have to give families with a disabled/special needs child a hard time?

Well Zach went back to school on Monday and he came home exhausted. Tuesday, he was the same way, but very crooked and complaining his neck hurt from the position he was in and miserable with leg pain. Well Wednesday he came home the same way and I called the nurse to see if he could have his prn order of tylonal and to be repositioned in his wheelchair. Of course they said yes not a problem. Well Thursday am comes and I get a phone call they are concerned about Zachary. They complained about his positioning, and worried he might choke. I was irked right away because i just knew something would get started by making a request. Well I called the head of the school n urses and she totally agreed with me. He should have his prn med, and be repositioned. They also wanted him to have a tray. She said it would do no good so I am not getting him a tray.

Well another day has gone by and supposidely the principle has gotten involved. Obviously because the nurse didn't get anywhere with her supervisor or myself so lets go to the principle. Well they have decided to hold a meeting on Tuesday *(Not Monday) to figure something out. In my opinion they aren't to concerned since the meeting isn't on Monday. I understand the safety of my child, but come on no complaints till i make a request. Well I believe their job is to be there and tend to his needs. Let you know he only goes to school until 11:45. A whopping 3 hours. LOL

I have offered to keep him home but they will have to supply a tutor and they aren't going for that either. So if thats the case whats the problem? I wish I knew.


I have also been nice to this school, but now am making them do a 504 plan for him since he qualifies. I know more about it so they can't get away with saying he doesn't qualify. Thanks to Zachary's room mates mom in Boston who was a lawyer for children with disabilities she has put me on the right track to get these things in place.

Other than that Zachary seems to be doing ok. Just a few minor issues but nothing we can't handle. He can't wait to go back to Boston to see how much longer in the cast. We go back on 3/10.

..........................Should of Figured

What a weekend I had. It started out with me going to school for the weekend. I didn't want to go for many reasons:

1. Didn't want to leave Zachary (even though I know my mother in law and Robert can handle him)
2. I had a big test I just didn't understand the info so I knew i was going to do bad on (Plus 1/2 of the info on the test was from the weekend I missed for Zachary's surgery)
3. And I had just gotten Zachary on a pattern to sleep at night.

Well I go to school, yup I did bad on the test (so didn't 18 others yes 18 out of 53 students failed. But also be aware they consider failing less than 75 not your typical 65), I go get my patient info and I have to do my process guide (patient info look up) and she has 29 meds I need to do cards on and administer. How in the world can 1 person take 29 meds at 1 time? Well I was up very late working like a beaver and go to clinical the next day. Well that was a mess I just couldn't do anything right, and just fumbled my way through. I promised myself I will never have a day like that again and Sunday was awesome. Not a problem all day, until I get home and Zachary doesn't sleep for me last night.

Why is that? I have no idea. So back to trying to figure this little guy out. I was gone for 2 nights and he slept all night I come home and he is up. So needless to say I am very tired today.

On the other hand, Zachary has gone to school today. He is only going for 1/2 days, but it something so he doesn't fall to far behind with his school work. We did get his work done that his teacher sent home for him. I can't wait to see how his first day went he was very excited to see his friends.

..........................He finally answered my prayers

Thank you God.

Yes, I have been asking for a full nights sleep, since I haven't had one in 3 weeks. Finally last night Zachary slept all night. Actually he went to bed at 9 and woke up at 10 just as I was going to bed and I went in and did the normal routine stay with him till he calms down and try to figure out why he is hallucinating and going like a crazy man. Well I laid in the bed knowing I just might get bopped in the face but I thought it was worth a shot. Well after about 5 min. he fell back to sleep with me rubbing his head and I got up and went to bed and we woke up at 710am. I feel great today seeing there was no interuption during the night.

I am hoping that was the first of many more complete nights of sleep, but I will take it 1 day at a time. I am just very thankful for that one. I was literally at my wits end of not getting sleep along with working, taking care of Zachary, and trying to get all my school work ready for this weekend of school. Thanks again God for that wonderful night of rest.

Other than that Zachary has been having alot of pain during the day the last couple of days. I have a call out to his dr. but I'm sure they will probably tell me to keep giving him the pain meds. I hate giving them to him. I honestly think thats whats causing the hallucinations. He has been eating which is good. Other than that he is doing as expected. He can recite many of the cartoon shows word for word from watching them all the time.

............................First day back to work

Well I am kinda excited to see how today goes. Today is my first full day back to work since Zachary had his surgery 2 weeks ago. I am nerveous on 1 hand, but happy on the other. I am hoping for a little break from Zachary with his friends being here. I am thinking he will be figuring out how to play with them from a laying down position and not calling for me every 5 minutes just to make sure I am here.

I still need to figure out how to get him to sleep all night again. Yes we are still not sleeping. We start at about 230am and then wake back up again about every 1-1 1/2 hr till about 630 am. I am a person that needs 8 hrs of sleep and this broken sleep is not cutting it for me. Any ideas out there?

Yesterday we ventured out to Wegmans to get groceries. Rob pushed Zachary while i got what we needed. Zachary insisted on going and getting out of the house. He did very well and did seem a little more chipper by the time we got back. I just think he is bored from being in the same position all the time. (I re-position him, but for the most part he is considered in the same position on his back where we can sit, roll, whatever)

Happy Monday to all and I will keep you posted

.....................First Full Day Home

Well Wednesday was our first full day home and it was a pretty good day. Zachary decided already he wasn't going to be cooped up in the house all day and wanted to get out. Well we did just that, why not? It was a nice day to be out and about. I think it was around 50 degrees out.

Anyway, we went to his school first to hand in the papers saying he could go back to school when his pain is under control (which it is but we are waiting another week), then we went to see his class. We visited for only about 10 min. Zachary really enjoyed seeing his friends and thats all he talked about the rest of the day. After school we went and got Daddy a donut and brought it to him at work. Daddy was surprised Mommy had him out all by herself. (As I type this a day later trust me my back is paying for it. Dr. Petrosino here I come for a visit real soon) Then we stopped at the Pink Joint (Ann's Family Restaurant on Grant Ave in Auburn) and Papa Tony helped carry him in to visit. Zachary wasn't really up to the visit there for some reason. He said he wanted to go, but once there he was being "Stubborn Zachary" We came home after a very quick visit there mom thought for sure we could take a nap. A much needed nap, but Zachary had other thoughts. The rest of the afternoon we just chilled out and tried to catch up on some things. Later on our neighbor Mary Ann brought us over a cooked dinner meal. It was delicious and thank you so much Mary Ann it was a big help.

As I type this its Thursday morning and our night was terrible. Zachary was up about every 45-60 minutes. I got no sleep and am dying for a nap. All he wanted when he woke up was me to rub his belly, make sure mommy was there, and to say he loved me. I enjoy that, but not at all hours of the night. We are hoping for a better night tonite, please god help us out here.

Other than that we are in the house all day today and don't plan on going anywhere until Friday, then we are going to try to go to his class valentines party. Will update when we have more.
This was the last day in the hospital I believe. It may have been when they said he would go home.


The "Card" king. This little stinker loves to play pairs and can kick you butt in no time.

........................We are HOME

We are home. Thank God for many things....a successful surgery (to this point so far), a fairly short hospital stay, great friends & family, a safe drive home, and for allowing us to be all home together again.



When we got home Rob ran out and picked up Marissa at dance, she was surprised because we didn't tell her we where on our way home. Zachary did very well on the trip home no complaints until we got to the Syracuse area on the Thruway.

Once we got home our house was decorated with Balloons everywhere for Zachary from our friend Debbie. He enjoyed seeing them all. He got to lay on the floor and play with his trucks. It was rough at first because he wanted to do so much and we wanted to do so much to catch up on things, but we all settled in and he at his dinner.

I will post more on Wednesday, but just wanted to let you all know for now we are home.

Thanks again for all the prayers, and get well wishes.









Zachary is saying good bye to his favorite nurses on 10 Northwest at Children's Hospital Boston. This is Zachary & Rob. Rob was actually the aide, but Zachary instisted he was his nurse and the boss on the floor. Rob got a kick out of that.

Here is Zachary & his other favorite nurse Danielle. They had alot of fun together. She would harass him about the Boston Red Sox and he would give it right back. When he didn't want to talk to her anymore he would tell her to get back to work or he was telling her boss, but the funny thing is when he wanted something it was always "Where is Danielle?" Didn't matter what shift it was he wanted Danielle.

............Monday morning

Hello again. It's Monday morning and the Dr. came in and said possibly Tuesday he can go home. But thats if he isn't agitated, eats, drinks, has a bowel movement and his lab work comes back ok. I asked they do some blood work to see why his foot is still swollen and a few other things. The cast guy came in and trimmed his cast again so he should be good to go now with it.

He was laying in bed on his belly for the first time watching a movie very comfortably. So far today his fever is gone and it will stay that way. If we don't go home Tuesday it will be Wednesday Dr. SPencer said. We are not rushing it in any way just because of the distance, but on the other hand we want to go home too.

I will post later on how the day went, just wanted to let you know today is not the day for now.

THanks to all the people sending wishes, and get well thoughts Zachary's way. He really enjoys us reading them to him.

....................Sunday Update

Today was a very off day for Zachary. He didn't sleep well during the night and then around 630 am the little baby in the bed next to him went into respiratory distress so he was woken up by a cart call, and about 10-15 people rushing in and all this noise. He was scared during that but I was right there to explain it was ok the baby should be ok. The rest of the day he worried about the little guy until we saw the grandma in the lobby and she said he is ok but in ICU.

Zachary was very short tempered yesterday and I wa very frustrated because nothing I did was right even though I was doing what he was asking of me. He didn't eat much and we kept telling him he needs to eat if he wants to go home.

We have been icing his foot and his groin area due to swelling. He is enjoying the ice packs and will ring the bell about every 1 1/2 hr to tell them he needs new ice. Zach only got up 1x to the wheelchair as because he was miserable. No sense in pushing him when he is in a mood. Later in the evening they had to pull his iv and start another one. The one in his left arm blew. He was a trooper and did very well during it. The only thing he uses the iv for is his antibiotic. Everything else is oral and he is doing pretty good with it all. He hasn't needed to much pain med which is good but on the other hand he won't verbalize if he is in pain so we kinda just play it by ear. I think he had the valum only once yesterday so another good sign (no spasms and no anxiety). We are waiting for the Dr. to come in Monday AM to see when we might go home. They also need to cut his cast AGAIN!!!!!!!! Yes I said again because when he has to go to the bathroom there is no way its going to happen. I know he is tiny but man they really made the openings tiny on him. LOL

I will keep you all posted as we get closer to being discharged.

Saturday Update & Photos

Saturday Update

Zachary started off today great. He woke up and was talkative and giving his male nurse holy heck right away. It was a good holy heck though. Zachary got washed up and up into his wheelchair and was in it for about 3 hours. We took him for a walk down to the lobby and daddy took him into the gift shop and bought him a new dvd. I personally think daddy bought it for himself but said it was for Zachary. It was a construction video....as we all know boys and their toys. LOL Zachary had a good lunch. Not as much as usual but he did try everything. After that he got back into bed and had a rest before his buddy Troy *(I used to babysit him until they relocated) came to visit him. (Thank You to the Reeds for the visit & gift you brought Zachary) Zachary decided when they where here he wanted to get back up again so we did as he pleased. Well I think he was just really tired out and did a lot of moving so he kinda got crabby at the end of the visit with them. Zachary then went back to bed and rested for a little and then came time to start pulling out some connections he had. First came the catheter. In my opinion it wasn't a good idea because there is a lot of swelling in the peri area and his cast opening isn't very big and we haven't been able to maneuver the urinal thing so he won't go. They had to call the ortho on call up to look at his cast. He thinks Zachary shifted in his cast after they originally cut it up the side the other day. The nurses and I say the opening isn't big enough. So tom. they are calling the cast team up and are going to have it cut a little bigger. Worst case scenario will be a new cast. (We don't want that because it will mean more stress on Zachary). After all that Zachary was able to get #1 IV out. Now he just has a Saline Lock in for when he gets his antibiotic. Otherwise he is free from it. They switched him over to oral pain meds today so he gets oxycodone, Tylenol & valum all by mouth. Dinner came and he ate about 1/2. He is enjoying all the milk shakes still. Today he tried Strawberry. Guess what mom will be making non-stop when we get home. After dinner he started to spike a temp again, and became very agitated. Even at me and was yelling at everyone to leave and leave him alone. It took some time to calm him down, but the job was done. We are hoping to try to keep tomorrows schedule the same as today in hopes he can tolerate being up in the chair. We need to get him in that position for some time since its a 5 1/2-6 hour drive home and he will be in that same position. Obviously we can stop and take a break but all that is going to do is slow us down because whether he sits in the car seat or the wheel chair its the same position. We will know more on Monday as for a possible come home day. I think we are all ready for it including Marissa, but time heals everything so we are taking it day by day at this end with no rushing. So until tom. everyone please rest peacefully, as we hope to do the same tonight.

......................Friday Update

Hello all. Sorry this is a little late but I had a busy night with Zachary last night. Friday started off pretty good, but by 8-ish Zachary was quite upset so that took all my time and energy. Zachary got up out of bed and into his wheel chair for a couple of hours. We took him down to the lobby to see different things and just get out of the room. He tolerated being up pretty good.

Zachary had a edible arrangement delivered so he started out in the am eating the strawberries then moved to the chocolate covered strawberries. Boy he enjoyed those, and I don't know if it was because he really wanted them or because daddy was like "hey I want those chocoloate ones" I personally think it was his spunk coming out in him towards daddy. We ordered him a lunch tray and he took 1 bite of mashed potatos and was like gross!!!!! He did have about 3 Vanilla milkshakes though. Dinner time came and he had chicken parm. He ate most of the chicken. Then at 7 they had shift change and we got this nurse aid that wanted to do things her way not like they had been doing and that put Zachary over the edge. He kept telling her not that way they do it this way and I could see him getting upset, so I spoke up and she gave me her attitude. Well that was a very short stay for her because I went right to the nurse and said something so we didn't see her the rest of the night. Zachary was so upset they had to give him medicine to calm him down. Then 11 came and his nurse changed and this morning I turned her in. She never repositioned him since last night before we went to sleep. So evil Jodi came out.

This am Zachary is much better he has his favorite nurse aid Rob with him and he was giving him holy heck. The Zachary personality is coming back. I have a few pictures to upload here but the network wont let me so I will email them to a friend and they will post for me later.

Thanks going out to the Gleason family for the package they sent our little guy. He got a Boston Red Sox package that had a autographed ball, hat, coffee mug, mints,and candy wafers.

I will try to update later on Saturdays progress. Zachary is up right now in his wheel chair and wants to go for a walk so I better get moving him. Thanks all for the continuous thoughts and prayers.

February 5th-Update on Zack & Photos

Zack in the recovery room















Zack today with his baseball blanket!


Thursdays Update

Today was a very long day for both Zachary & I. Last night I didn't get much rest between all the bells going off, Zachary waking up and his little room mate waking up it made for a very long night. It seemed like every time I would get to sleep someone would come in and wake me up. His Dr. was in sometime between 530-6am checking on him. I couldn't quite see the clock without my glasses on.

Zachary has been very quiet today, but did get him to talk on the phone to his papa dave. Zachary is starting to drink a little more which is great also.

This afternoon he asked me to lay and cuddle with him so you know I took total advantage of that opportunity. It was very uncomfortable for me seeing he takes up most of the bed width wise with his cast, but I was not passing up that opportunity. I think he is very angry at us, but like the Dr said he needed it done for many reasons after seeing Tuesdays xrays.

They ordered him a wheelchair so that will be delivered to the hospital sometime Friday morning and we will be renting that until he doesn't need it anymore. Then later on I mentioned to the nurses his foot seemed to be getting more and more swollen so they had the cast guy come up and check it out and he had to cut the cast up to the knee and prop it open to relieve some of the pressure. Hopefully by morning it will look better. Zachary was also running a low fever but nothing tylenol couldn't handle. They have been having him blow bubbles every couple hours in order to help keep his lungs expanding. As for pain he still isn't verbalizing anything, but we are able to tell by some expressions. He is getting morphine from a pump and they just gave him some valume to help with the spasms. It seems as soon as he falls asleep he wakes up from a spasm. I am going to attach a pic of him so you can all see our little guy.

Thanks again for all your thoughts and prayers and I owe you all a lot for everything everyone is doing/saying. Thanks again and I will update again on Friday.

Update On Zachary

Just wanted to let you all know Zachary is successfully out of surgery. I was able to take him into the OR until he was asleep and that was around 840am. We where then walked down to the waiting area and they would call the OR every 90 minutes for updates. That helped a lot knowing how things where progressing.

During our down time we sat in the waiting room playing cards, reading, I was working on school work, and Robert went and donated blood.

Zachary came out of anesthesia around 530 and we got to see him around 630 in recovery. When we arrived in there he was sound asleep and was not waking up for nothing. We tried until 830 to get him to wake up and never succeeded. We where brought up here to his room and as I sit here and type this he is still asleep. They say he is sleepy because he was under for so long and he has a nerve block to help with pain.

I have taken a couple pictures, but cant post them because for some reason i can't sign into my blog so a friend is posting this for me from a email. I can't even read any comments left for some reason. I am keeping updates on my facebook page though. Pictures will be on there when I get some time to catch up on everything.

I will try to post again tom. I am off to get some much needed rest before the pain med wears off on my little guy and he needs me.

Thanks for all the thoughts and prayers from everyone. It means a lot to us.

For those interested Zachary is at:

Boston Children's Hospital 10th floor Northwest room 1024
300 Longwood ave Boston MA 02115

..........................Thank You to Sue Orman & friends

We would like to take this time to thank Sue Orman and her church for this beautiful quilt they made for Zachary. The quilt is red on 1 side and has a baseball print on the other and has knots on it. Every knot was tied with a prayer. Well tonite I was sitting on the couch reviewing my work for school and Zachary asks if he can take the blanket to his room and lay down with it. I was like absolutely, its yours. Well about 1/2 hr later Rob went in to see what he was doing because he was awful quiet (very unusual for Zachary) and this picture is what we found. The blanket obviously has some meaning to him now it allowed him to go to sleep peacefully and will allow him his last good night sleep here at home for awhile. Thanks again everyone its absolutely beautiful.