Monday, September 29, 2008

Angelo and the girl next door

Angelo has a crush on the girl next door. Not only is she the head cheerleader of the high school she was also up for homecoming queen. When she got all dressed to get crowned, she knocked on the door to take a photo with her "favorite guy" Soooooooo cute!

Thursday, September 18, 2008

Planning a Trip

Oh, my! Trying to get everyone's schedules and airline tickets to coordinate is gruesome. I got one of these hair brain ideas to go see my Nana in November. It would be Me and the two boys. Well, in less than 24hrs. it has become a whole family event. It has gone from the 1st of November to the last part of November. You guessed it Thanksgiving! WHY me? do I ask? So far I got tickets for the boys & I. Then my husband did a boo-hoo and I got him a ticket. My parents are driving from Wyoming and bringing a friend of mine (who left a Mormon polygamy group. that is another long story in itself) who I had to get a return ticket to PA because she will be staying at our home for a while. But good news..............I will see all my relatives and have a Thanksgiving again like when I was young. I will get to see "my" Golden Gate again! Weird how you grow up and see it all the time and take advantage. We are going to the tree lighting day after Thanksgiving on Pier 39.
Yes, Angelo will have his GPS on and I do not care what anyone says or thinks, I am attaching a leash thing between him and I. One of the reasons why I left the bay area....Really scary people! Outside of SF, not so bad. But, in the city.....Oh, MY! I get to take the kids to half moon bay. We will probably freeze our hinney's off but they will get to put their feet in the sand. So, off I go to try to get this together.

Friday, September 12, 2008

homeschool year again

We have started our homeschooling year and I hope to make things a little more enjoyable this year for the boys. I feel that my older son, Jeno's schooling was too structured and Angelo's didn't have enough structure! I am going to try some different ideas this year. SO, wish me Luck! (A few prayers my way couldn't hurt either) Right now I am having the "Can't seem to get organized" and I am only a week into the school year. Yikes! I am trying to get everything in arms reach or at lest where I can find it. I am such a "curriculum junkie"I have soooooooo many useful things. But when I need them I don't know where (what box, if in attic or basement) it is. Hope by the end of the weekend (LOL) I'll have it some what together.


Thursday, September 11, 2008


Can you believe it has been 7 years since that tragic event? I can still remember cruzing through my bedroom about 6:30 (we were in Colorado) and hearing a newscaster say " OMG a plane has crashed into the Twin Towers"! At that time we all thought it was just a plan with a dysfunction . Then to watch in horror as the other plane made its way to the Towers. Then the plane in PA and the Pentagon. I do not know about you but my whole outlook on life changed at that time. My feeling of security just flew out the window. My generation never had to deal with any horror. My grandparents and parents dealt with WWII, Korea and Vietnam. But it never touched our soil. WOW................Isn't it funny that more people were prepared for the millennium than they were for an attack on their own country. I know people that gathered flashlights, first-aid kits, water, generators, blankets, 30 days worth of water and books to live off the land, just in case. All just to watch the clock hit midnight and nothing happened. HA! I lived in a small community of people for a while that keeps a years worth of food in their basement. They have people assigned to each neighborhood as a "disaster leader" Every house has a box under their sink that has a red flag. If a disaster should arise and you are really hurt you put the red flag out. If you are okay or are not so bad you don't. This way they know who to go to 1st. I always wondered what you would do if everyone was unconscious in your home?"LOL!!!! But, it is a good idea and it shows how they care about their neighbor. Wouldn't it be nice if the whole country could feel that way about each other? Why does it take a tragic event like 9/11 to kick Americans in their bums? And then how long did it last until people started to say it was a conspiracy? I thank God for those who stand behind our flag and defend it. I watch young men, the age of a couple of my children, march off to protect us. I have girlfriends who sons and daughters have gone or are in Iraq now. At times I feel that it was just a bad dream. I pray for those that had to live it and have lost their love ones to 9/11. I am sure they still live it everyday. Here is a wed-site with photos and video of that tragic day and after. I am going to try to download it and keep it on a disk for later years. I know years from now, my grandkids are going to ask me if that day really happened.

Wednesday, September 10, 2008

Thank you Heather and Caleb

Today Angelo got a phone call from Caleb. You have to understand that besides relatives, Angelo has never had a buddy call just for him. He was so giddy with happiness he didn't know what to say most of the time. They were so cute....Whats your favorite monster truck? Do you like wrestling? How about trains? were some things I heard him saying. He hung up saying, "Thanks for calling my buddy, I love you"! Too Cute! Thank God for Mommies like Heather, that know just how to make a little boys day!

Tuesday, September 9, 2008

Recipe for Friendship

I received this poem from a very clever friend, who always knows when to send me the right stuff. After reading the poem, it was like a kick in the bum to me. What else can I do when I already feel tapped out? I sometimes feel like I am being pulled by all sides to do do the right thing and to solve everyones problems. Does this sound familiar to anyone? I have been very down lately with our move to PA. It seems we are no better off than in WY. Angelo has not received anything different as far as medical is concerned. We are also worse off financially. It seems so funny since we are making 3 times as much (that old oil bill hasn't helped)We are having one FAMILY CRISIS AFTER ANOTHER. That in itself I can handle but this is sickness and death kinda stuff. Blah! and of course who do they look at to be the rock. MY husband (oldest son of oldest son). But, who does my husband come to..................ME! I guess I am just tired. So, after reading this poem, I asked God "What else can I do"? (It was more of a comment not a question). My only answer was "More" Simple as that "More" AGHHHHHHH! Well, I guess I better face the day. Stop doing a Laura Pity me Party. Get outa my PJ's and start working on canning and homeschool. The number one thing I need to do is plug my phone back in. ( Hee hee) I have been in that "If, you Really need to talk to my cell phone mood) After you read the poem. You will ask yourself "What does this have to do with all her rambling"? Probably nothing....... But, it sure is funny how God works in little ways to get you back on track.

Recipe For Friendship

Fold two hands together
And express a dash of sorrow
Marinate it overnight
And work on it tomorrow

Chop one grudge in tiny pieces
Add several cups of love
Dredge with a large sized smile
Mix with the ingredients above

Dissolve the hate within you
By doing a good deed
Cut in and help your friend
If he should be in need

Stir in laughter, love, and kindness
From the heart it has to come
Toss with genuine forgiveness
And give your neighbor some

The amount of people served
Will depend on you
It can serve the whole wide world
If you really want it to

Monday, September 8, 2008

I know....I was bad

Thanks for the kind words. But, I was a bad girl and I know I said I wasn't going to post on the list serve but...............not the best of me came out Saturday. I am generally a "happy go lucky person" and I didn't mean to be "harsh". I just didn't want any WS family to have to go through seeing their child's heart broke. I also know that it was not done on purpose by anyone. It is human nature to think of yourself 1st. But, explaining that to a WS child was not the easiest task. "The Mother lecturer" just came out in me (having 6 kids in all)and I thought, "You know, why should people not be aware of what your actions can do to another person". Simple as that. I didn't post on the list serve to be cruel or get back at any of the families because I totally understand not wanting to drive hours just to find out the park is closed or it was raining too hard to ride the rides. Believe me, with Angelo's anxiety, I would of thought twice about coming. But I would have called. I posted my home number, cell phone number and email address. I thought I would get a call that morning from someone. Nothing. So, off we went to Knoebels. Again, I didn't want this to be a debated subject on the list serve. I just thought it should of been brought up. Kinda an etiquette 101. This is something that I don't want anyone to ever go through. So now I am totally off of this subject and am moving on. Angelo is doing so good except that he was up until 5am this morning before he decided to go to sleep. He had a full day at the football field and even got some rosy sunburned cheeks. I thought for sure he would knock off early or at lest by 9pm. Yikes! he was wound up like a top. I even gave him Melatonin (2 times) once at 11pm and then again at 3am and it didn't work. I feel asleep with him at 5am and woke up at around 7am. Wouldn't ya know it. He is still sleeping like a baby ZZZZZZZZZZZZZZ, the little skunk!

Saturday, September 6, 2008

Sad Day

Knoebels was a total wash! I understand that the rain was a problem. But Me, as a person would of called or tried to call the person who was putting on the get-together and let them know that there would be a good possibility I wasn't showing up. Instead I had gotten quite a few "We will be there rain or shine" There was 15 families that RSVP'd and I only had one that emailed to see if we were still having the event. Not one showed up nor did anyone phone, email or cell phone me (which was posted several times on the list serve) I really didn't care for me but, the look on Angelo's face was devastating as he waited among his balloon lined picnic tables in the Pavilion. Yes, it did rain off and on. And yes, if I were only attending, I might not show up (but generally I am a trooper) but I sure the #$%^ (excuse me) would of let someone know! Sorry about the venting but I was under the impression that families with WS kinda understood how their child with WS would feel sitting there waiting for his so called"special friends" to show up. We waited for two hours because he would not leave the area afraid he might miss someone. Only when his Dad agreed to stay did I get him on the rides for a while. I am so upset. I cannot get the look of his sadness out of my mind. I almost wrote a nasty email when I saw this on the list serve, written in the mid day, TODAY.
9wslist mailing list };
Liz,We are about 2 1/2 hours away and due to the weather decided not to go. The weather here is supposed to be pretty severe.Cathy (Alexus WS-9)
Written not to me, but to someone else. I wanted to post a FYI to the list serve in manners on responding to an event and then deciding not to go. Decided to vent on the blogger instead. Sorry! I know I will feel different tomorrow or at lest off of my milk box. I am so disillusioned by this WSA group and people just in general.

Friday, September 5, 2008

WS Knoebels Day Tomorrow

Well, tomorrow is the Williams Syndrome Family get-together at Knoebels. Wouldn't you know, they say it is going to rain. Thank Goodness, that they have upgraded it to periods of rain. Which means it will shower off and on but when ???????? Dang it! Knoebels is only going to be open for 2 more weekends and their fall scheduling is still up in the air (The do some Halloween stuff). The Pavilions then would be 1st come situation. Soooooooooooooo...............My Family will be there, Rain or Shine. We do have a large covered Pavilion. During the rain we can still visit and enjoy he company. They said that unless it is high winds (so far 2 mile hr) the rides will still be going. I am so bumed out about this and there is no way that I can tell Angelo that it has been cancelled. He wakes up everyday and says "What's today"? "Is it Knoebels"? He tells strangers walking by our house that all "his" friends are going to be at Knoebels on Saturday. I hope that some people will brave it and show up. Angelo wanted me to do purple balloons on the tables. Wouldn't you know the big HS Football game is tonight and thier colors are purple and white. No purple balloons to be had in this community. I think I may have some in the attic, in some remote box. I keep everything! Because we homeschool, I always look at a milk container differently or scrapes of colored paper. My husband just shakes his head! LOL!!!! We picked up name tags but they do not come apart easy. I hate that! Hee, Hee, I think I may have some in the attic too! Well, I need to go make some cookies for a homeschool picnic. It is at a place called coon creek. Cute name. We are having a big bbq for all the local kids. The will get to collect stuff in the water and go fishing (only catch and release but still fun) and then off to the HS football game tonight. Tomorrow we have Knoebels (pray it turns out ok) and then Sunday is Jeno's 1st Football game. He is a guard and tackle. The whole Schicatano clan will be there for that! His cousin is cheer leading for the opposite team. Should be fun! Angelo gets to be the water boy. I will post photos on Monday! Have a glorious weekend! Maybe I will catch up with some of you tomorrow!

Thursday, September 4, 2008

WoW! Has a month gone by????

I decided to go to my blog today and saw my last entry. Yikes! Where did August go? We have so many things happen in our family this month. Some great things and some very sorrowful things. 1st the Good!

We went to CHOP and saw Dr. Kaplan and the heart department. Angelo's heart severity had decreased from moderate to mild. YEAH!!! When he was born it was moderate to severe. SOOOOO, he is going in the right direction. Looks like no surgery unless those darn arteries and valve have any other ideas in the future.

Dr. Kaplan was so nice and Angelo loved her. She did suggest we go to a developmental doctor and a doctor that specializes in blood pressure. Angelo's was a little high (could be because of the anxiety). They want him to wear a 24hr. cuff. LOL!!!! Like that is going to happen! We can't even get him to wear clothes with tags! AND just this year was the blood pressure break through......................They used to have to give him a sedative to get a cuff on. Thank God for this pretty nurse! First time in 9 years that he didn't scream the whole time they took his blood pressure.

For the most part, My husband and I did not hear anything about Angelo and his anxieties, behaviors, etc... that we had not already heard or experienced everyday of his life. We went to Dr. Kaplan for HELP! Some things that we could handle when he was small are getting a little out of hand. And yes, we are NOW open to the medication route because we hate to see him so stressed out and want his quality of life to be better.

I need to back up and explain that we moved to PA out of choice to help Angelo. We thought that because we are a lot closer to a qualified doctor and facilities that we would get more help. Yes, we waited 7 mos to get in to CHOP via their scheduling. We filled out form after form. We experienced 2 days of appointments to actually be no better off than we were. We are now waiting for an appointment for a doctor to help us with meds. They said it would take 3 - 4 months to get this scheduled. On top of it all, I got those same stupid forms (2 weeks after our 8/08 appt) to fill out again in the mail! Do they not keep a file on him? It stated that as soon as they get these forms back, we will get a response via the mail telling us when his appointment will be. This response will take 4- 8 weeks for us to get. When our appointment will be? WHO KNOWS? Maybe around Christmas???? So, in the mean time what do you do?

1. I called his doctor here in town. The medical facility will not prescribe him anything due to not having enough knowledge about WS. But, if he has an ear ache "COME ON IN"! Since every other child is on some sort of ADD meds this amazes me.

2. Called his medical plan for a list of doctors. No one will see him before Christmas unless............He is about to kill himself or harm someone else. Then they will commit him to the hospital. Can you believe it????? How crazy is that?

Well, it looks like all we can do is wait. We are in the hospital shuffle.

We had also a family loss this last month, My husband's sister passed away from two blood clots going to her heart. She broke her ankle tripping down some stairs at a Pizza Parlor. She had surgery (plates, screws, ect.) She went in a week later to get another cast on after the swelling went down. The removal of the old cast released the blood clots and two days later she said that she didn't feel well and wanted to lie down. They looked over and she was gone. Such a shock to everyone. We are still waiting to see her walk through the door. It doesn't seem possible that someone so young and healthy could have this happen to them. My in-laws are taking it so bad.

My mother-in law has been so sick that they have taken her to the hospital twice.

I do not know how I could take losing a child. It is bad enough for us, being a brother or sister, but a child must feel like a piece of your heart has been ripped out. God bless the hearts of all that have lost a child.