..........................Awesome turnout

Guests looking at the raffle boards

Zachary playing a game. Thanks to the Christophers for donating their games

Bounce house for the kiddos

Face painting by Dawn & Nate. Thanks guys you are awesome

I would like to take this time to thank everyone that came out to the benefit for Zachary. We believe it was a huge success. I say we believe because we have no idea how much money was brought in for our medical bills, but we do know that the attendance was way over our projected number of 300-350 people. We ran out of the main food about 1/2 way through and had just deserts left. From what I was hearing from everyone the food was delicious (I wouldn't know I only had a slice of pizza. LOL) Zachary had a great time and loved every minute of Abner pushing him around in his wheelchair.

The weather was beautiful and the company we had was awesome. Words really can't say how thankful we are to have such great friends and family.

..................Recent Update

Yes many of you are probably wondering whats going on and where is she? Well I have been extremely busy and to the point where I am cutting into what little sleep I already get.

I will start with Marissa first this time. She had her first softball game and they won. Yeah!!!!! She was very happy with herself and just keeps talking about it (keep it up girl be just like your mama) Dance is starting to wind down for her just 1 more month then her recital and 10 yrs dancing award. We are also still awaiting the letter to see if she is in National Junior Honor Society. I wish they would hurry up since the ceremony is on Thursday. I hate finding things out at the last minute.

Zachary started actual therapy sessions on Monday and gave us a scare this week. He had a lot of pain on Monday and through the night. Then on Tuesday I went to do his exercises with him and felt this large lump on his left hip. When I took him to his therapist on Wednesday he was very concerned and thought maybe he had a hip dislocation. Thank GOD he didn't have that. What the problem is, is his rob in his femur is sticking up and hitting his pelvis. So you can palpate the rod itself. We where told to just not let him abduct his leg if at all possible. If it becomes to bothersome to him he will have to have surgery to take some of the rod off but that will cut the rod short and risk needing a replacement sooner than expected.

Other than that we are finishing up the planning of the benefit thats planned for Sunday. I can't wait myself because there are a couple items I so want to try to win myself. LOL

I will keep you all posted as much as I can and try not to be absent anymore.

..............................Benefit Information

...............................Awesome Prize delivered today

Yes......you have to see this beautiful raffle prize that was delivered to me today for the benefit of Zachary. A very nice gentleman dropped off the following piece from Mackenzie Childs in Aurora NY. For those of you that are unaware of Mackenzie Childs you can check out their site at:

www.mackenzie-childs.com

Anyway here is the newest item up for raffle chances at our benefit on Sunday April 26th from 1-5 at the Sennett Firehouse.This is called a Aalsmeer Compote

We are also going to have some T-shirts available that a good friend of ours kindly donated. Vin is running in the Boston Marathon on April 20th and he is doing it in honor of our son, his children and a couple others. He had to raise $3000 and who ever donated he put on the tshirt along with the people he is running for on the front. These will be available at the benefit for $20.00 each. Here is a picture of them.

...................Physical Therapy

Zachary started PT today. He did very well. I was pleased with him and the therapist. He was evaluated first for strength, sensation, degree of movement. Then Dale did a few exercises with him and had him start weight bearing as tolerated. He would hold him and have him put a little weight on his left leg for about 10 seconds then pick him up to rest. He did emphasize to not over do it and no walking the Dr. stated weight bearing only.

The Dr. did give zach homework and he was like homework....I don't have school this week so no homework. Anyway, he completed his homework today for the Dr. but we aren't sharing what it is because I wouldn't want to embarass Zachary. LOL

............................Good Friday? or Not a Good Friday?

Yep there he is scorching his favorite nurse!!! Its a good thing he is cute or he wouldn't make it our of BOSTON alive. LOL We had to take this picture. Zach in his Yankees jersey while Daniel had her Redsox shirt on.

Well on Good Friday April 10th we headed back to Boston for another post op apt for Zachary. Well we did good on time getting there and no traffic problems. We went in for our first apt with genetics and didn't even wait to see the Dr. We get in there and Dr. Stoler comes right in and says she is very sorry the results are messed up and she requested they relook at them. I was kinda bummed but glad on the other hand she didn't settle for what the results where. She wanted deeper info.

Anyway what they said was some of the biopsies came back negative for the chromosome deletion while some had it. She said its confusing but on the other hand would make sense because he doesn't have all the features/issues that if he had the true deletion. So she said that does show there is a flaw somewhere. Where we still don't know. She asked the research lab to go back over it and she will get back to us.

On the other hand she said she had gone to a seminar and they where discussing the syndrome Zach has and they highly suggested that she turn the info in for research because there is very few cases (aprx 5 she said) and they can grow off of the info. So she asked our permission to use Zachary in the research and will keep us posted to as what they find. All I have to do now is take some more pictures of him and email them to her for his folder on this research. She was going to do it, but we didn't want him to upset/agitated for his next apt. with the ortho when we got out of there.

We then went to his ortho apt and they took his cast off. He wasn't to happy with that but let me tell you its so nice know. He has a brace on his leg and starts PT tom. morning. YEAH!!!!!! HOpefully it will help with the muscle spasms that he keeps having. All the way home he had terrible spasms.



What would normally take us 5 hrs took us 7 hours to get home. It was a combination of backed up traffic, his pain/spasms and rain. We had medicine to give Zachary but it really makes him worse. Its the Valum that makes him hallucinate, but I couldn't not give it to him to try to help him. He would sleep for about 1 1/2 hr then wake up hallucinating and screaming in the car. It would take about 20 min. to calm him down then he would fall asleep and start all over again.

Yesterday was Easter and he was actually really good. He only had a few spasms and actually wore his regular khakis with the immobilizer over his pants. It was so nice to see him dressed up again. Other than that, nothing new here. We go back to Boston in 2 months (because Dr. is on vacation in 6 wks when she wanted us back and the 7th week I have school so that put us at 8 wks). Here are a couple pictures to enjoy.

Zachary & his 2 grandmas. Nonnie Judi & Great Grandma


Marissa with her Easter loot from Nonnie Judi's. Really how many baskets does a child need? At our house the Bunny only leaves 1!!!!!!!!!!!!!!!

...........................taking forever

I haven't been on in awhile since there really isn't much different going on. Or atleast anything worthwhile posting about. We are still waiting for APril 10th (Good Friday) and a Good Friday we hope. LOL

Thats when we go back to Boston for a check up on Zachary's leg. I am hoping he gets out of the cast. All of the sudden he seems like he weighs about 10 lbs heavier. Maybe its just me getting tired of all the lifting. Rob seems to think he is going to be in it longer.

We do keep telling Zach if he doesn't follow the dr's orders he will be in it longer. The other day we caught him backed up to the kiddy recliner trying to pull himself up backwards into it so he could sit in it. And by doing that he was using his foot to push and that was putting weight on his foot which is a dr. order to not put weight on it. Then later on I caught him up to the toy box trying to stand up. I had to explain to him he can't do that either. Same thing weight on the foot not good. Plus if he where to fall forward or even backwards he would not be able to stop himself and he would for sure bash his little head. I can imagine how he feels in this cast. I totally would be going crazy myself so I feel bad for the little guy but on the other hand I am trying to teach him we have to follow orders.

Marissa on the other hand is a typical pre-teen. Does anyone want a pre-teen girl? LOL Someday she will learn we as parents know all the tricks. We have been there done that. Right???? Well needless to say she hasn't realized that yet. LOL She did make the softball team for West middle. I guess over 30 girls tried out and they kept around 15 (give or take a few). Hopefully she will be able to handle everything school, sports, dance, and blue print. She knows if the average drops activities drop so she is working hard. She got her report card last week and has a 93.86 average. High Honor Roll again!!!!!!!!!!!!!!