........................She is a teenager now

Sorry this is so late but time seems to just get away. Nothing really new on this end, we just celebrated Marissa's 13th bday. I can't believe myself its been 13 years. WOW!!!!!!!!!! We are preparing for Marissa to go camping for 1 week with Nonnie Judi and the family from Buffalo, then home for 1 day and then off to Las Vegas with Uncle Tony & Gracie for 2 weeks. Yep I said my teenager is going to Vegas. She is so excited and can't wait to be spoiled rotten. Which we all know will happen gosh she already has a nice gift waiting for her when she gets there. I am sure with that nice new Pink Canon Elph camera we will get lots of pictures. LOL

Chelsea decided she wanted to get Marissa in the face with the cake. The funny part is Marissa got it in the face, but lifted her arms up and re-mooshed it in Chelsea's face. Guess they weren't thinking quick enough to move out of the way for reactions.



Marissa opening gifts with the help of her brother. LOL Not sure if I will get all the girls straight but heres a try from left to right (Zachary, Marissa, Abby M, Brigid C, Kaylei S, Taylor M, Julie D, Leanna A, Hailey V, Megan Q, Rachel P, & Chelsea P.

..............................Wordless Wednesday

...............................Never easy is it?

Can anything ever be easy? Not in my life it seems that way. Zachary has been getting this bruise on his lower back just above his sacrum area for no reason at all. Well I was watching it because the first time I honestly thought he fell and just didn't tell us since he is afraid he will have to go to the Doctors again. Well to make a long story short the bruise comes and goes. About 2 weeks ago he had one 9cm x 12cm and it was painful to him. Painful enough he asked for tylonal which never happens with our tough guy. I got so nerveous because of the size I took him to his pediatrician to have it looked at. Well he was like uh, uh, I think its this, I don't know really, maybe its part of the syndrome that they don't know much about. I demanded we start at the bottom and do blood work and go from there. Well his labs came back ok and his physical therapist in the mean time says I should probably call his ortho in Syracuse. Well his pediatrician decided to do a ultrasound.

The US results came in that there is no cyst (Thank God), but there is large vascular structure. Well we called his genetics Dr. in Boston to see what she thought and they are reviewing the US disk (being sent to Boston) and want to see him. They referred us to the Vascular Anomolies Center. So we go in August with our scheduled Orthopedic appointment. We have to keep an eye on this and keep taking pictures when it reappears. Well he has another one again and its almost as big as the other one. I just wish things would get better for the little guy.

In my opinion I think its something to do with his leg length difference. Its more prominent and he limps big time now compared to before his surgery (he had a growing spurt and of course the left side didn't grow with the Right) and something is pinching in there and causing this. They did say that could be a possibility. I sent them my pictures I have been taking and I had a really good shot of him standing and you could compare the way he stands and hip placement.

Well thats about it for now. Just going to enjoy our long weekend together this weekend. Not sure what we will be doing but Rob has relatives in from Texas (haven't been here in over 5 yrs) and the family is having a picnic. We also have a double header baseball game & bday party on Sunday and Sunday is Marissa's bday. Can you believe she is going to be 13 already. Time sure does fly.

........................He is swinging again

Here are a couple pictures of Zachary taking some swings at the baseball the other day at his grandma's house. He hasn't lost his touch of being able to make contact thats for sure.

..............................End of School

This is the last week of school here for the kids. Marissa has 1/2 days through Wednesday and Zach had a full day Monday and 1/2 days Tues. & Wed. Both are excited for the school year to end. On Monday Marissa had her award ceremony & Zachary had his buddy days. Unfortunately I didn't make it to Zachary's buddy days because both where scheduled at the same time and I always try to make his stuff so this time I went to Marissa's.

Marissa's softball season is off to a good start. She is enjoying herself playing and practicing in the backyard all the time. We are also in the planning of her bday party. She has decided to have a dance party here in the back yard. We have a DJ & Tent *(just incase it rains). She has about 50 kids invited and mom is hoping about 1/2 show not all. LOL Over the weekend Nonnie & I took her shopping for her 13th bday and man was that a trip. I am so not ready for shopping with a teenager. What happened to the days where our parents would just come home with stuff for us and we would wear it? I also disagree with half the clothes out there either by price or by style. She must of caught her nonnie in a weak moment because she got a pair of shorts for $34.50 (yes that much) and they have holes in them. What the heck kind of style is that wearing holy shorts? LMAO!!!!!!!!!!!!!!!!!

Zachary will be going to a summer program that will help keep him in sync with his progression in school. It's only 830-12 for 6 weeks. He isn't to thrilled about the talk of it but I think he will enjoy it once he gets going. He is always up by 730 so its not like he has to get up early. He will just miss morning playtime here at my daycare.

We don't have much planned for summer vacation because of our trip to DISNEY in September. But we will manage to make it to DC for a 3 day weekend to see our friends that live there (He is actually a baseball manager for the Nationals) and then we will go to Toronto/Canada for 3 days in August. We plan on catching the Toronto vs Yankees game then to Marineland for a day. I am excited about that because believe it or not I have never been to Niagra Falls. Marissa is going to go camping with nonnie for 1 week then home for a day then off to LasVegas for 2 weeks. I don't know what we will do without her around for 3 weeks. Her brother will be nuts without her to pick on. Well as you all know it goes both ways with the picking.

Other than that, thats all thats going on at this end. I will update with pics in a few days.

.............................Boston again

I am not sure where to start today. I have been putting this off since Friday and I guess from all the phone calls I am receiving (yes I am ignoring most of them sorry) I better give everyone a update.

Travel to Boston was good. No problems with traffic or Zachary. We got there went right in to get xrays done. Rob and I where looking at the xrays thinking oh my god that does not look good. So of course that put our heads down. We didn't even have to wait long for the doctor (maybe 5 minutes) and she came in with 2 students and they kept Zachary occupied while we spoke with Dr. Spencer. She pulled up Zachary's xrays on the computer and placed the xrays from February next to them on the screen and what Rob and I thought was not good actually turned out to be good. She compared them and what we weren't seeing was the bonegraft. Her computer images where crisper and his femur is still healing but very slow. Which is ok because it is keeping him down a little longer to let it all gain strength.

Dr. Spencer then evaluated Zachary and of course Zachary was Zachary and giving them holy heck. Yes he was all Yankees right down to his boxers. They all laugh because how can you say something back to a 6 yr old let alone a 6yr old that voices his opinion very well regarding the Red Sox. After laughing they told him he doesn't have to wear the brace anymore but needs to stay in his wheelchair for school, but at home and out and about with us he can use the walker as tolerated. That made him so happy. So they asked him to walk so they could watch him and he took off down the hall and didn't come back. He was gone to the chalk board which was ok because you could tell Dr. Spencer wanted to tell us something else.

Well the actual news is: He will return in August for more xrays & check up and a closer view of the rod in his tibia. She is concerned about that rod and its placement. She thinks it may not be in the bone so that means it won't be telescoping out when he grows. So if its not in (remember he has weak bones so that was a risk factor) he will have to undergo surgery again with bone graft placement there also. The way they kinda explained it to make sense to the non-medical people is the rod is screwed in his bone kinda like a screw into a piece of wood. So if the wood is soft the screw kinda gets stripped and just keeps turning but not adhering to the wood. Thats kinda like his tibia bone. The rod is there but just not grabbing onto the bone to stay in place. We are hoping for the best and praying that it was just a bad xray Friday from movement but won't know till August for sure. If worse comes to worse for needing another surgery this one wont be as intense since it would only be the tibia (not the tibia and femur) and it wouldn't require a body cast again just the leg cast. Also summer will be over with so no dealing with the heat in a cast either. If he needs it done, surgery won't be until atleast October because of Zachary's special trip planned for September.

Again we are hoping for the best, but I will keep you all posted as to whats going on and his achievements.

...........................Excitement

I don't know who's more excited Zachary or myself. Zachary & I will be traveling to Disney in September to celebrate his triumph of his surgery & recovery. Yes we will be in the magical place for 6 nights & 7 days. The trip can't get any better after everything we went through booking. We had a few dates to select from, I really didn't want him to miss school, and we where going cheap.

Well as we kept calling for different time frames 1 time our travel agent called back and said Jodi you have to take this trip during this time frame. As she went on I realized it was meant to be at that time to book. We got upgraded to a moderate resort for free, free dining, Mickey's Not So Scarey Halloween Party will be held 1 evening while we are there, and better yet a secret person (I know who but you guys won't. LOL) paid for 1/2 of our trip. We really do have some wonderful friends. As I got thinking some more I really thought it would be more fun if a "special" friend could join us in Disney. So I called my friend up and said hey listen don't you want to go to Disney with us? It would only cost you XXX to join us. She couldn't believe it. So guess what.......Mary & Ana are meeting us in Disney!!!!!!!!!!!!! So again who is more excited Zachary & Ana or Mary & myself? I think its a good toss up. So anyway, September 23-29 we are going to be in Disney.

Marissa is not joining us because she will be giong to Vegas for 2 weeks to visit Uncle Tony & Gracie. Rob hates Disney so he can stay home no grumps in Disney.

Our other excitement is we are heading to Boston on Friday for another check up for Zachary. Zachary is hoping to get out of the wheel chair and brace. We aren't to sure about that, but its worth a shot to pray for it to happen. Zachary seems to be doing ok at therapy with a couple little concerns but I think working with him on his exercises it will all come back in time.

Tuesday Zachary went for his 6yr check up and he finally grew this year. Last year he didn't even grow 1/2 inch but this year he grew 1 inch and gained 5lbs. So he is 43 inches tall and 47 lbs. Still on the small side for his age and being a boy, but as long as he's healthy we don't care if he is small. Means I get to hold onto him a little longer. LOL (I know me being selfish)

School softball is over with for Marissa and now soccer and summer softball has started. Not even a day rest in there. I know the days I have to run, run, run I am crazy, but I would rather have her busy than sitting home on the computer or fighting with her brother.

Other than that, thats all thats going on in the Saurini household. Will update after our apt. on Friday in Boston.