...................Excellent weekend

The Memorial Day weekend started off on a busy note. Friday night Marissa had her dance recital and as usual she did very good. We are so proud of her, even though she was only in 2 instead of 5 or 6. She was bummed but she had knee surgery back in October and to be on the safe side we took it easy this year. I don't have the pictures downloaded yet but once I do I will post them.

Then on Saturday I had to take a test for an entrance exam for a LPN class and did very well. After that we got the pool opened, and Zach headed off to my parents for the night. Marissa was babysitting so Rob and I enjoyed a nice date night. It was nice to just have dinner as the 2 of us and to talk. We did a few errands after and went home to relax.

Sunday was going to be a long day so I started to prepare myself. Sunday morning I ran my first 5k race. It was so hot and alot of hills for the 3.1 miles. The temp was in the 80's and humid. I managed to finish the race in 34:36. My goals where: #1 to finish the race, #2 not be last, #3 to finish in under 34:00. I accomplished 2 of the 3 and very close to the 3rd goal. Honestly if I hadn't walked up the big hill and alot on the nature trail part (this was the end and I was so sick to my stomach and weak by then), I would of beaten my 34min mark easily. I am ok with it because it gives me something to work off of.

Here I am with my brother who is a good runner. He smoked me in the race but thats ok.

Here I am coming down to enter the nature trail. It was just a little over 2 miles done at this point. (Incase you can't tell I am the one in the black tank top.)


Here I am crossing the finish line. I placed 144th out of 200+ in the time of 34:36


Here I am with my friend Michelle (Pink top) & her sister Amanda. This was after the race, and we are all standing. They both run alot so they were much faster too. Michelle was 26 something and her sister was 28 something. So yes I was the turtle but thats ok i will only grow from here. I can't wait to sign up for my next race.

Sunday afternoon we took Marissa and her friend up to the Majorpalooza family event then Rob and I went back up around 6:30 for the adult portion. It was great to see some old friends and listen to some bands. We even had a couple of drinks (for those of you that know us we don't drink)

Monday Marissa had to march in the parade for band. Her flute was broken (its getting fixed) so she helped carry the huge flag. She wasn't to happy because they had to wear these really heavy uniforms with a wool coat and it was in the mid 80's. After she went out on her friends boat and came home nice and red. With her lovely skin she will be tan in a day, unlike her mother who is a lovely shade of lobster red. LOL Zachary spent the day with my mom going to the cemetaries of family members and putting flowers on the sites. He had a great weekend in all too he said. I wish all weekends were 3-4 days long.

Today we are all back the grind and up and at 'em. I will post a couple pictures that are downloaded now and the rest later on.

........................Boston Follow up

Friday we went to Boston to see Zachs genetics Dr, & Dr. Spencer for his leg. Genetics went pretty well and they want to order him for a sleep study because he isn't sleeping very well & when he does he isn't well rested. He has been falling asleep in school and on the bus alot lately. The other specialist they want him to see is a hemotologist. He bruises so easily and basic lab work shows nothing so they want to look into it a little more.

Next appointment was Dr. Spencer. We got there and had xrays and got called into a room rather quickly. Always a great thing for me. I would rather wait in a room than the major waiting area. Dr. Spencer came in went over how Zach has been feeling, what has he been doing and reviewed his xrays. After that she looked at his leg, told him a few rules in order to get out of the cast. She also told him about the 4 wheeler and to be extra careful. We walked out of there with no cast on, he can use his walker in the classroom and with us, but otherwise he is to be in his wheelchair. He wanted no wheelchair but since he is a such a go-go boy we need something to hold him down a little longer. The femur isn't totally healed but enough that he is safe to be on his own. We start PT tomorrow and he will get it 2-3 times a week. I am hoping it won't take long for him to rehab back to his normal self. He already has full extension & flex of the knee joint which isn't bad considering he has been in the body cast for 3 months.

We are suppose to go back to Boston the middle of July and hopefully that will be just as good of a appointment and a easy in and out. Thanks for all your thoughts & prayers. You don't know how much they really do help and what they mean to us. I am going to share a picture of Zachary with his Doctor.

Zachary & Doctor Samanth Spencer. The best ortho doctor around in our eyes.

........................Zoo & Bday

May has been a very busy month so far. On Thursday May 5th I went with Zachary and his class to the zoo for their field trip. It was gorgeous out (1st day without rain in 19 days) and the temp. was just right. We got to see many of the animals out and right up front for them to see. Usually its so hot they are hiding or sleeping.

I love the parrots, but don't care for the smell in the bird area. Zach wanted out as soon as we got in there. He was afraid a bird would poop on his head. And poop was the topic of the day with all the boys. They were fascinated with the animals doing their business. And it seemed like every exhibit we went to they were doing their business. LOL

Part of Zacharys class. For security reasons I will not name the children except that Zach is the 1 in the wheelchair and the lady is his Teacher. She surely will be missed at school next year.

The monkeys. Zach wanted to sit and watch them all day. But I made him go out and see the other animals and we went back in before we left. I kept telling him I was going to leave him with the monkeys and he was all excited. He is a nut-so.

On Saturday May 7th we celebrated his birthday at Cedar House Bowling with his friends. He had everything Phineas & Ferb. That boy sure likes his P&F.

Daddy was giving him a pep talk before he started bowling. He did pretty good. I think he got a 95. Something I probably wouldn't have gotten. He got a strike too and was so excited.

Marissa was helping Zach out. He got a little impatient at times, but sissy came to the rescue and helped out. They all had a good time this year. The key is not to many friends being there. Just enough to enjoy each other and help out and have a grand 'ol time.

This week we have Marissa's band concert (I can never get pictures because she sits in the back and you can't see her.) Next week we are back to Boston for check up and hoping Zachary gets out of his cast, and the following week we have dance recital rehearsal and dance recital. Then a nice 3 day weekend for the Memorial Day Holiday. Oh boy I can't wait I have so much work I want to try to get caught up on outside and around the house. I have actually given up my gym time the past week to get a head start on it, I hope I don't regret doing that and can get back into the groove of going to the gym.

.................1st Communion

On Saturday we celebrated Zachary's 1st communion and 8th birthday with family and friends. We had it at out house and it turned out to be a beautiful day. Thank you god for that privilege. Zachary was so excited and really did well with getting around and visiting with everyone. I was honored to have my dad & step mom with us too. I have been given the opportunity to get to know my dad after many years of not knowing him (well I knew who he was, but just didn't get to see him or spend time with him).




When shopping 1 day with Marissa we spotted this Tshirt and said it was perfect for both kids. Unfortunately they only had it in Zacharys size, so Marissa decided to model it when he opened it. The funny part is Marissa showed it to her friends and they all said it fit her better than Zachary. LOL We love you Marissa.

The "Saurini" family portrait in church. Aren't we a good looking bunch?

The Saurini's

Zachary & Father Lou (for some reason Zachary thinks he is god, not father.)

Already before church. He is 1 handsome looking young man. I was also so happy he got to enjoy it without his body cast on. He did very well pain/spasm wise.

Just posing away.

Listening to intently to the service. I personally love this picture (probably because he never knew I took the picture so I didn't get a oh mom stop look.)

We had a beautiful day on Sunday for the 1st communion and they all looked great. Zachary chose not to try the wine. What he actually said was "I am not going to drink blood, thats gross" I just love how they phrase things. (Personally I was ok with his choice, because I am not big on sharing cups with public people and to many germs out there these days. I hope I am not punished later in life for that choice and reason, but if so it shall be what it is.)

...............ongoing pain

Zachary has been having ongoing pain in the knee area for about 2 weeks now. I have called Boston and they didn't really seemed to concerned. Well the pain is still there and Zachary doesn't usually complain so that makes me worry. Well I called again and they said we should have him xrayed to make sure nothing is wrong. Well we went today to Dr. Palominos (well we saw another doctor because she was on vacation) and they xrayed him and this doctor seems to think the end of the rod is hitting his knee and thats what is causing the pain. She said since he is in the cast, to just ice it, and keep giving him motrin/tylonal until we go back to Boston in 1 month. Not sure what they will do, but the poor kid is in agony. He just keep complaining his leg is sore and never did before this surgery. Lets hope the next month goes by fast so we can get some concrete answers.

He is doing great without his medicine we discontinued. No changes as of yet which is great.

...............1 down 7 more to go

Yesterday I had to call Zachary's peditrician to get a refill on 1 of his meds and I asked if we can d/c 1 of his others. We had discussed stopping it back in the beginning of February, but Dr. Anwer didn't want to stop it before his surgery seeing he was going to be enduring alot of stress, fear, and anxiety. Zachary has been on this kick on not wanting to take his "Drugs". He has it in his mind that they are bad, and illegal and the cops are going to arrest him for doing "Drugs". We have tried to tell him they are not illegal and ordered by the doctor so they are ok drugs. We even had a friend of ours who is a cop tell him its ok. The cops won't take him or his drugs because they are ordered by the doctor. He still doesn't believe it so I thought I should ask if now is a ok time to try to take away this specific medication. We are going to give it a try and see if we notice any changes. He may have to go back on it, but if we can stop 1 maybe that will make him feel a little better that he isn't taking as many.

I don't blame him for not wanting to take medications, but in some situations you have to. His father doesn't help this matter because he is against meds too and is always commenting on the medications. Sometimes I would like to slap him up side the head for saying things. I am one to say if it helps you then thats great, but if it makes you worse (mixing with each other and causing all those side affects) then its not great. Luckily none of Zachary's mix with each other and cause any side affects. Some of the meds will not be taken away for awhile and if they do it will be when he is in patient for his seizure testing and medical staff will be on hand. I am scared when they start to wean the seizure meds for the EEG monitoring. But with God and the medical team I am sure he will be safe. Its just me being worried.

This week is Spring Break for the kids. I am off on Thurs/Fri and we are going to have some mommy & kids time. We are going to go to a museum on Thurs (they haven't decided yet), and Friday will be relaxing & hair cut day. I sure need to get the grays taken care of. LOL

Hope everyone has a great Easter.

...............Thank You God

Today I am very thankful for the opportunity I have just been given. I was searching the internet for anything new on the Oculo-ectodermal Syndrome that Zachary has and came across a story of a family in Washington that has a 7 yr old little boy with the same syndrome. We have been alone all this time learning on our own about the problems, cures (none), causes, and research for this syndrome. I did a little more research and was able to locate the mother on Facebook (god I love Facebook sometimes). I sent her a message and she accepted my friend request and we have messaged back and forth a few times already. Our boys have so much in common. They are on similar meds and at similar points in their lives.

I gave this mom our genetics Doctors info so maybe they can get in touch with her and learn some more also. Our Doctor will be excited to hear about their little guy I just know it. Our Zachary has been put on the research of the syndrome while they have not YET. I am sure they will now though or atleast I hope so because the more patients they find with it the more they can learn and link things together. I do ask just 1 more thing, Dear God, please help us all through this journey and keep the boys as strong as they are and have been. They are beautiful gifts to us their parents and we are here to do anything and everything to make them live a normal life.