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!

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.

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.

Laura

09/11

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. http://www.september-11th.us/Archive.html

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!

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 me...call 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

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!

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.

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!

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.

Football Camp

Yesterday, my son, Jeno started Football Camp. He is 10.5 yrs and very competitive. My husband, of course was thrilled that he made a team with all his old high school buddies coaching and yes, they roped him in to asst. coaching. AGGGGHHHH! Well, I guess he will be there everyday anyway!

Well, Angelo had to come along to root Jeno. So off they all went. 2hrs later I heard Angelo yelling from the porch! He was so excited, they let him join football camp with the other guys. They put him in the flag division area to learn the ropes. My husband was so surprised because he kept up with them all. Angelo had to show me all of his football stances. Then we had to call almost every relative so he could tell them he played football. Too cute! Oh, course Jeno was rolling his eyes the whole time. To blow Jeno's horn....they said he was a maniac! I guess that's good???? He was almost knocking the big high school kids over. Art said that the coaches were drooling. Jeno is now only 10.5 yrs old, wears almost a size 8 shoe and weighs 146 pounds. Man, it looks like another son that I will be talking to his arm pit. I'm 5'4" and I come to my oldest son's armpit. Thank goodness he wears deodorant!

Can't wait to see what tonight brings for Angelo at Football Camp.

Nature deficit disorder

I found this today and thought it was neat after my fire fly experience


Get out into his nature
If the heaven's declare... let's get out there!
Take a hand and go for a walk.
Slow down. Marvel.
Worship the Creator of all things.

Ideas to combat nature deficit disorder:
~ make Worship Walk dates with other families. After a good hike on a nature trail, gather together to sing hymns of praise around a campfire, or in a clearing...~ see nature walks as an antidote against stress and depression...
~ collect little stones on your walks and display them in a old mason jar set on a windowsill
~ play a game of "Find Ten Glimpses of Glory"... and walk through the woods looking for ten interesting leaves, or ten evidences of animals, or ten unusual plants, or ten flashes of color...~ lay out in the backyard and look up. Watch clouds float by. What shapes are His hand forming? Do you know the different kind of clouds? Print out this page to take out cloudspotting with you. Or watch this fascinating Cloud Tutorial
"For since the creation of the world His invisible attributes, His eternal power and divine nature, have been clearly seen, being understood through what has been made..." ~Romans

Fire Flies

I know that all you Easterner's are probably used to them but Me and the boys are totally amazed by those little lighting bugs. The closest I ever came to ever see them before was on the Pirates of the Caribbean ride in Disney.

Angelo got himself a new bug net and every night he is out there at dusk, swooping, running and jumping after those little glimpses of light. As I sat on the deck tonight watching him, I wondered if he will always find such amazement in the little things in life. I hope so.........I would hate for him to lose that magic of God's wonders that we all seem to lose as we get older. I am so blessed that I have him to remind me to sit back and catch a few fire flies. I realize that God gave this wonderful little person to me to forget sometimes about the routine things and just go with the love of living today at this moment.

God Bless you all and your own little " lighting bugs"

Does this sound familiar?

Tell me if this is common in you home........

Angelo: Mom, where are you? (standing outside the door)

Me: In the bathroom...

Angelo: What are you doing?

Me: Needing a little privacy.

Angelo: Are you going potty?

Me: Yes, Angelo. Can you please go talk to your Dad or brothers?

Angelo: Mom, (pause) Can I come in?

Me: No, Angelo mommy is going potty. I would like some privacy.

Angelo: Mom, I just have a question........

Me: Yes, Angelo

Angelo: Hey, Mom what are you doing in there, anyway?

and it goes on........................everyday.......whether I am going potty or in the tub. So, funny.

And then if it isn't Angelo, I have a dog's paw under the door. You know they are thinking...I wonder what's she doing?

Well, I guess I will never, ever be lonely! I thank God for that!

The List Serve

Again, is it just me or are people getting out of control? I have pointed this out on this blog before about the anger in people lately. I have been subscribed to the list serve for 9.5 years. Never have I seen the chaos and upset that individuals are doing in the last few months. It is all very sad since we are in reality, in the same boat. Our WS kids sail a different course and we as the captains have to find the right path for them.
I have gotten to the point that I am afraid to add a comment. I am afraid I will be criticized or talked down to for any comment or suggestion.
All too sad............................................... Why?????

OUR Cosmo

Finally, I took a photo of our little addition to our home. He is 8 weeks old and full of spit and vinegar.

I have never seen a puppy that has totally taken over our lives. He even has the older doxies doing what he wants!

Wait

I love this. Had to write it down to share.........................................

Wait

Wait Desperately, helplessly, longingly, I cried Quietly, patiently, lovingly God replied. I pled and I wept for a clue to my fate, And the Master so gently said,"Child, you must wait"."Wait? You say, wait!" my indignant reply."Lord, I need answers, I need to know why!

Is Your hand shortened? Or have you not heard? By Faith, I have asked, and am claiming your Word. My future and all to which I can relate Hangs in the balance, and YOU tell me to WAIT? I'm needing a 'yes', a go-ahead sign, Or even a 'no' to which I can resign. And Lord, I've been asking, and this is my cry: I'm weary of asking! I need a reply!
"Then quietly, softly, I learned of my fate As my Master replied once again,"You must wait."So, I slumped in my chair, Defeated and taut and grumbled to God,"So, I'm waiting...for what?" He seemed, then, to kneel, And His eyes wept with mine, And He tenderly said,"I could give you a sign. I could shake the heavens, And darken the sun. I could raise the dead, and Cause mountains to run. All you seek, I could give, and pleased you would be.You would have what you want --But you wouldn't know Me.
You'd not know the depth of My love for each Saint; You'd not know the power that I give to the Faint; You'd not learn to see through the clouds of Despair; You'd not learn to trust just by knowing I'm There; You'd not know the joy of resting in Me When darkness and silence were all you could See. You'd never experience that fullness of Love As the peace of My Spirit descends like a Dove; You'd know that I give and I save...for a StartBut you'd not know the depth of the beat of My Heart. The glow of My comfort late into the Night, The faith the I give when you walk without Sight, The depth that's beyond getting just what you Asked Of an infinite God, who makes what you have LAST.
You'd never know, should your pain quickly Flee, What it means that "My grace is sufficient for Thee."Yes, your dreams for your loved one overnight would come True, But, Oh, the loss! If I lost what I'm doing in You!
So, be silent, My Child, and in time you will See That the greatest of gifts is to get to know Me. And though oft' may My answers seem terribly Late, My most precious answer of all is still, "Wait.'"
Author Unknown

Do we ever have enough time?

It seems like I cannot keep up with my canning. I have so much to do and soooo little time it seems. I am sure that everyone has felt that way. My home always feels like it is some sort of chaos. What happened to those days that I could start a project and actually finish it? Oh, yeah, I remember.................It was Feb. 15, 1999. The day before Angelo was born! LOL!!!!!! Feb. 16, 1999 was the beginning of my never ending journey to try to keep organized.

Who are these women that have everything in order? When do they find the time to have their cupboards straight and the wash ironed. My kids are lucky that it comes out of the dryer un-wrinkled. My husband always opens a cabinet and something always falls out on him! Hee Hee. I guess I have learned to dunk! I have a half painted wall that I started in January. Today I might get to it. Now, read the word might.

I still have 6 quarts of sour cherries to pit today and figure out what I am going to do with them. I got the cherry pie filling done yesterday. It takes 3 times as long to pit because Angelo just loves to use the pitter. He doesn't push hard enough so, I seem to be picking the seeds out by hand. Oh, well.....Years from now, I will think of this as cherished memory. AGHHHHH!

We went and picked our little puppy, Cosmo up on Saturday. It took us 3 hours to get him. It was such a pleasant trip. Jeno decided to stay with his Mam & Pap. Uncle Joe lives next door with a huge train set-up. He had fun and we had a non-sibling car ride. No fighting and no "Tell him to stop looking at me" time. Angelo was quiet all the way there. He kept asking where NY was. I know he thought we were taking him to a doc. appt. The look of joy on his face when we crossed the NY border. Sooooo funny! He looked at me and said, "I guess we are not going to Philadelphia today"! Oh, my........Now we have the countdown to the Aug. Appts.

Thursday

Well, I haven't signed on a lot lately. It seems with the summer going on, I never have any time. We have been canning up a storm and working on the garden a lot. I have zucchinis and yellow squash growing out of my ears! Angelo has a pumpkin plant that has taken over the yard. I swear it is something out of a sci-fi movie. This little plant started with one seed in a children's peat pot for a science project for him. This little plant must be 25 feet long ( I am not kidding). We have it going down the side of the hill and now it is traveling down my backyard. Last count, he had 20 small pumpkins. He is so excited. I do not think the neighbors are though. I had to sneak next door and chop down the vines from this monster before they saw. Thank goodness they were gone (Senior couple that has a picture perfect yard). Oh, and Angelo learned a new joke. Here it goes because he wanted it posted

How do you mend a broken Jack-o-lantern? With a pumpkin patch!

Angelo has been up and down the past couple of weeks. One min. he is happy the next he is crying. I guess it is waaaaaay better than when he was in this hitting and swearing stage. Boy, does he not like to sit in time out! It is like pulling his little teeth! I also put a drop of vinegar on his tongue when he said a bad word. I told him sour words deserve a sour mouth. It didn't seem to phase him too much. I then remembered that he loves salt & vinegar chips. LOL!!! Oh, well! It was worth a try. He also went through a "I will not wash my hair phase" He would cry and scream when I would wash his hair. Thank goodness he runs through the sprinkler and get his hair wet because I was only getting to wash it 2 times a week there for a month. Now, would you believe, he wants his hair washed everyday! Sometimes twice a day! UGH! I turn around and he is stripped in the bathroom with shampoo in his hand. Last week, I had to drag him in there. Now, I am telling him he is wasting too much water...................................What's a girl to do? I would rather have a clean son than a stinky one!

I hope everyone has gotten their Knobels flyer. I know that it is 2 months away, but I cannot wait! I love seeing all those happy faces!

Is it Just Me?

I have kinda been on shut down mode lately. The enviorment around me has been seriously bothering me. I keep wondering if it is because I was in a very small town before we moved to Pa and I just have been out of the loop so to say. Little back ground...............I grew up in the bay area in California. By no means was I sheltered and not exposed to anything. I am 45 years old now. I still remember walking through San Francisco as a kid seeing all kinds of things. LOL! You know peace, love and all that. But what I am seeing now from people is down right anger in them. People are angry. Just yesterday I saw a young adult man jump on top of a mini van that his girlfriend was in. Jumping and swearing! All in front of the Weis grocery store. Angelo got a good ear full. Oh, did I have explaining to do in this one. Why was that mean man hitting that car? Why was he yelling? Why does that woman use bad words? Why? Why? Why? AGHHHHHH!
Now this is not out of the ordinary. Things around me have been going on for the past couple of weeks like this. A heard a woman yelling last week our back alley....I guess at her boyfriend. This was around 2 in the morn. That one was an eye opener!
Hey, I live in a nice neighborhood with nice quiet neighbors. So, I thought. Maybe it is just me but I am seeing a huge change in people. Thanks for hearing me vent!

Strawberry picking

Last night we went Mulberry picking and to day it was Strawberries!

Angelo and Jeno had tons of fun! We each had a basket and ended up with 4.5 quarts of strawberries. I will be making strawberry jam all weekend! Angelo and his Pap ate the last jar last week. I didn't realize how many we picked until I got home and started cleaning and measuring them. I have 10lbs of blueberries coming next week from a local farmer. I think I will save some and mix the blueberries and strawberries for jam. It was sooo hot! and humid while we were picking. Wouldn't you know...as soon as we were done it started to rain. LOL!!! It was so funny, every strawberry Angelo picked he had to show to me or his Dad for inspection. We were done with our baskets and he has maybe 20 perfect strawberries. I had to take him along and help him fill his basket. He informed me that he liked his strawberries much better than the ones I picked! Ohhhhh, the little skunk!

UHGGG!

You know that saying..............Don't ever say things can never get worse!

1. Yesterday morning I found out someone hacked into my checking account and took $604

Have to go down today and file a grievance and they will put the money back in my account in

6 days. Thank goodness they count yesterday as day 1!

2. My husband received a notice in the mail that he owed over $10,000 in back child support.

This is for my step-son who is now almost 20 yrs. old. Oh.......they forgot to file the paper that

he was graduated from school and was over 18. hmmmm, Art signed that over 18 mos ago.

They stopped sending notices that we owed support, the case worker signed off the case, but

they forgot to tell the state! soooooooooooooooo, 7 hours later, going through 3 states of child

support case workers, getting ahold of my husbands ex wife in Florida (yuck) , I got it

all taken care of!

I Needed A RAISE OR A BUBBLE BATH!

couldn't have either, so I had a glass of wine on the porch and watched the the kids play in the water. Not ideal but very therapeutic!

What a Day!

We found out yesterday that Jeno has a slight thyroid problem. He is also 6 mos into puberty. They think that with both happening at the same time....He has the weight gain. They measured and it was mostly muscle mass. He has only grown 2 inches and has gained 30lbs???? in 6mos. The doctor said that he will get his growth at the end of his puberty sprout. My, gosh! I am signing him up for the NFL at the end of all of this! He has to go back in for a full blood work with fasting next week. They want to make sure that they are not missing anything. They are going to watch his thyroid because it keeps going overactive, than under active. In other words they have no idea what to do right now! Story of my life since the birth of Angelo. I just didn't think I would hit this one with a non-ws child. To put it all in a nut shell, they are doing blood work. If nothing shows up, "SEE YA IN DECEMBER" for a follow up.
Now.......on to Angelo. I will have to say he did very well at the hospital. He did a lot of rocking and I had to assure him that this was Jeno's Doctor Day! Not his! My only problem was that he was answering Jeno's questions. The doctor would ask Jeno if he got headaches and Angelo answered, "Almost every day"! I had to hush him a lot, but over all it went well at the hospital. I wish that was all I could say about his behavior. The last two days have been a nightmare. Every time I ask him to do something he says, "NO"! and then proceeds to do just what he wants to do! He is hitting and name calling. Yesterday I was called a freak 4 times, a human being?? 3times (doesn't make sense but he puts a lot of meaning into it), a meat eater 2 times (he is into dinosaurs), and yes the horrible "Bitch" 1 time. Did you notice the bitch was only once! LOL!!!! We were in Rite Aid and he wanted a water gun. He followed me around. I would put it as harassing me in the store to buy this gun. I kept telling him no. Well.....He turned around and said, "Man, you are such a Bitch"! Oh,my gosh! I went into shock! For one thing, we do not talk like this in our home. Nor do we watch TV that would reflect that kind of language for him to hear. My 24 year old would not even swear in front of me! It is just a respect thing! I know where it came from. "PLAYING WITH THE NEIGHBOR BOYS OUT BACK"
That is for a whole different bog! Well, I dropped what I was doing, I told him we never say that word, EVER! and he was marched out to the car (with Jeno sneaking behind like he wasn't with us) Angelo was yelling and screaming as I put him in his seat and strapped on the seat belt. I didn't say a word. I just proceeded to get in my seat and drive. I was sure someone thought I was kidnapping him.
This intense behavior has been going on for two days. That is why I was so surprised he was good at the hospital. I think he thought I was going to sneak a doc. visit on him. So, two fruit stands later ( had to get good fruit and veggies) and Angelo screaming all the way because I would not let him eat cherries and spit the seeds in the car, we finally got home. This went on and on until guess what saved me! The movie on the Disney Channel "Camp Rock" He has been waiting months to see it. At last I had some peace! I even recorded it for the future. I am so glad because he is watching it this morning.
Well, I am off to see what the day has to bring today! So far he is a little ray of sunshine. Hope to have a good and peaceful day. Ha! Ha!

Another Doctor

Well, I got the call today that Angelo's brother, Jeno does have a thyroid problem. Can you believe it? 10 yrs old! Come to find out my mother-in-law says it runs in the family (along with not getting their 1st teeth until they are way past a year old)! We are on our way to Geisinger tomorrow to see a specialist. I knew something was wrong and I made them do the testing. He sweats abnormally. He is always hot. Almost like he is having hot flashes. And he gains and loses weight.......LOL! sounds like me! So keep us in your prayers. Hope to get this resolved. He is hoping to play football but this puts a damper on his playing. Hope we can regulate him this summer.

Angelo has all his appointments set up for CHOP. We will be there August 6th, 7th & 8th. Hope to get a lot of things resolved there too!

3 weeks 2days

okay, here is the puppy Cosmo's baby photo for this week.

Can't get enough!

Angelo has started a new problem. He is obsessed with his favorite foods. If I buy him a bag of sunchips, he has to eat all of them or keep them in his room to eat later. I can't make cookies because he has to eat them all! It is like he can't help himself. I tried to hide the cookies we made today and he is obsessed with trying to find them. He will fall asleep and actually talk in his sleep that he wants a cookie. It is not all foods.......just certain ones. I buy oreos for Art, my husband and he has to hide them in our room. He gave Angelo 1 cookie. Wrong thing to do...........He searched the house until he found those Oreos. In our room in a shoebox. The little sneak put them back in the shoebox but left a trail of choc. cookies with the middle licked out. Don't know what to do? Now another thing to hide and keep away. We can't leave him in the bathroom alone because of the things he gets into. I had to put a lock on the outside of the door. Now I am having to put up a baby gate to the kitchen. Yikes! and now maybe a lock on the outside of my door. I do not worry about the weight but he makes himself sick to his stomach because he doesn't know when to stop. I am going to have to keep him on a food schedule and lock the cabinets. Maybe a chart on the wall so he knows when it is time to have meals and a time to have a snack. ????????

2 weeks old

How cute can you get?????

Fun at the railroad!

We had so much fun yesterday at the Strasburg railroad. We meet a lot of new families and had such a enjoyable time. The kids had a blast even though it was hot! My hair looked like Don King after the day was over. On the way home it said it was 99 degrees! Heather did such a good job planning all this out. It ran sooooooooo smooth and everyone was so relaxed. If I ever have a big back yard and lots of money, I would love to have those jumping pillows! The train ride was nice and Cherry Crest was fun. I would like to go in the fall time with all the pumpkins and stuff. Angelo now has a new "best friend"! Caleb and Angelo were like two peas in a pod. It is great that they had each other to relate to! I am looking forward to Knobels in September. I want to get a group photo ! I thought about it on the way home and then it was too late!

New Photo

We went to my nephews 2nd b-day at Knobels this last Sunday. Everyone had so much fun! We were in the Pavillion I have reserved for the WS picnic in September. I better start working on those fliers. LOL!!! Angelo rode on all kinds of rides. Angelo is counting down the days for the Train Day! He wakes up every morning and says "Whats Today"? I think he keeps hoping I will say Saturday! We got a new photo of our puppy. He is now 1 week old. We have decided to call him Cosmo.

New baby boy!

Well, we just purchased a new baby boy. Baby boy puppy that is. Before we moved to Pa, I used to breed dachshunds. I kept three of my girls and I had to give up the rest because we were not sure how many I could have in a residential area. My good friend Doreen, in NY breeds also and one of her girls just had these puppies on Memorial Day. I was mid-wife via the phone. I just could not resist this little guy. He looks like he is going to be a cream dapple. We are all so excited! I cannot wait until the day we get to move back out in the country and I can have more. Right now I will have 3 girls and a boy and can have a little breeding going on. Not til next year! He is so just a baby! I will post updated photos. Right now he looks like a little bunny rabbit. He is only a couple hours old in this photo.

Wow! what a looong weekend!

It seems we are still getting over the Holiday weekend. We had so much fun. In our area they had Anthracite Days on Friday and Sat. Friday started off with a Parade and we had Fireworks later that night. The kids and I sat on the front porch with popcorn and watched them. We had a perfect view.
Saturday, the kids went fishing with their Dad and Uncle Sibby. That is when Angelo caught his first fish! He was so excited. He wants to go everyday now! When they got home we went downtown to the festival and ate hot dogs and potato cakes. I also found a Christian Homeschool group! Yeah!!!! Can't wait. Too bad I found them at the end of the school year. But, it will be a good start for the new school year. That evening we went to a barbecue at friends. Great food!
Sunday we went to a Pig Roast. The whole family had a great time. So much food! The boys were playing all kinds of games and they had this big hill to roll down. Of course Angelo found himself two girls that took him under their wing! He was in his glory! On the way home we stopped to let the kids fish again. Such a beautiful area. I found all kinds of wild raspberry bushes. You know what I will be doing in mid summer while they are fishing. I can already taste the jam and ice cream. LOL!
Monday, we had a barbecue at our home. It was with close friends and we could just wind down and enjoy the day. We cooked up Jeno's monster fish and had chicken and hot dogs. The kids played outside with water guns and had a blast! Angelo loves to play hide and seek but he always tells people where he is......So funny!
I am taking this week to unwind Angelo before we go to Knobels this weekend for a b-party. Then the next weekend is the train with all his new WS buddies!! We are counting down the days. It is going to be a day to remember!

1st Fish

Yeah! Angelo got his first fish this weekend! He was so proud! Will post photos later. Having some problems down loading.

New outlook

Well, I woke up this morning feeling so frumpy. I saw this picture and that is how I feel about myself lately. I know it is the whole sleep deprive, can't keep up with the housework, I've gained that extra 5 or is it 10lbs I really don't need and I feel extra old today. I looked in the mirror and saw, OMGosh, My hair style is looking like my Mom's. Oh, what's a girl to do? I used to be the image of heath. Along with a hysterectomy it seemed my self esteem went too. Funny thing how not being able to have children anymore (whether you want to or not) can effect you and your body. I always pictured myself with around six kids. But, I guess I got that with Angelo! He is six kids in one!

Today, I decided to stop having a Pity Party and to stop saying I do not have enough time! Time to work on me too! Going to get this tired body going and exercise. I walk all the time but it doesn't seem to be doing the trick. I am actually going for a haircut and stop my beauty school bathroom time with scissors. Maybe cutting out chocolate could help too. NO WAY!!!! Chocolate is my stress meds. Going to have to work on that!

As my Nana says "Put on some lipstick and you can conquer anything" At 93 she has to know a thing or two. LOL!

School

Well, this week I have been doing the "figure out what curriculum I want for the boys next year party" on the Internet. To go via virtual or to stay with the routine I have been doing. It is so hard to find a good Christian based cyber school without it costing an arm and a leg. There are so many rules and regulations here in Pa. In Wyo, I just wrote a letter and that was it! Since we moved in the middle of their school year, I have just been laying low and haven't informed them of our change. But, this coming school year will be different. I can't pretend I just got here anymore. LOL! I know that I need to get all kinds of documentation for Angelo to stay home. I am hoping to conquer that one when we get to CHOP. It is so funny how I have to prove that it is better for my son to be with me, in an environment where he can learn, rather than be in a school where his sensory issues have no bounds and he is distracted all day. Putting him in a school environment with 1500 other kids.........UGH! We were told in his last evaluation report that he could only learn best in a classroom with 4 white walls, maybe 2 posters and only up to 4 other kids. Like a school will do that! He is sooooooooo wound up by the time he would get home that I was scraping him off the walls. I hated when the school officials would say to me....."You need time for yourself" For me sending him to school was like having a glorified babysitter. God gave him to me as my responsibility. And then the whole socialization speech you hear. Do they mean socializing or socialization? Two different things. Socialization means: "The process whereby a child learns to get along with and to behave similarly to other people in the group, largely through imitation as well as group pressure" Do I want my kids to be individuals? Yes! Now, my kids are social all day long. They can adapt to different age groups and then we have their age group that shows up every day after school. Oh, my.....I need to get off my soap box before I start on my religious reasons for homeschooling. That can be another day or another blog!

Just a thought....................

Have you ever looked at a photo of your child and saw what he may of looked like without WS? I know that it is a funny question but I am sure that every parent has asked this. This photo to me, is the closest I ever have seen him without the WS features. I am not saying that I do not think that he is waaaaay adorable now. But, sometimes the thought has run through my mind. I always wondered what he will look like in heaven when I hold him. When he will be perfect with no more pain or anxiety . But, God made him special for the world now. He was sent to teach the world understanding and compassion. I look at the world and at my faith in a whole new light since he has entered our lives. I am so thankful for all my boys but I am so grateful that God blessed me with the gift of Angelo.

New windows

Yesterday we got new windows put into our house. I think that some of them were from 1914. Angelo had such a good time with the window guys (as he puts it) They let him help them. He even put on his construction hat and got into the whole role. I am so glad he had some sort of pre-occupation with all the RAIN!!!!! Today it looks like it is going to be Sunny! Can't wait to work in the garden. I need to get the boys out for a little vitamin D. We are all looking so pale. The weather has been a big change for us since we moved. In Wyoming, even though it may of snowed the sky always seemed like it was blue. It seems always sooooooooooooo gloomy here. Blah! I can see how someone could get depressed. I am looking forward to a little more sunshine!

Some good news!

We are happy parents today! Our older son, Andrew got his degree in Applied Science/Technology! Yeah! Sad thing....He is now moving to California! Guess I've got to cut that umbilical cord. It reached to Colorado while he was in college but I don't think it can get to Ca. Steven our 18 year old is going to college in Florida. He tried out to be Peter Pan at Disney World. Out of all the young men trying out (lots) he got it! So, if you are in Disney ever, you can see Angelo's big brother. If you click on the photo you can see a larger picture.

Rain, Rain Go Away!

This morning we woke up and there was sun shining through all the windows. It looked like it was going to be a glorious day. Well, that all changed around 9:30 this morning. Yucky and cold! Rain off and on. This morning my little ray of sunshine (Angelo) was so happy. He was up at 6:30 ready to go. We ate breakfast and he wanted to start his school work right away. Thank Goodness we did! That little monster rolled in about the same time the storm did. I don't know what the weather has to do with his personality but it is like clock work. We generally know just by the way he acts that some weather change is about to happen. I feel so bad for him. I am praying that tomorrow will bring us some nice weather.

Fishing Derby

Had a really good time today at the Danville Fishing Derby. We were so proud of Angelo today. He was so patient waiting for a fish to bite his hook. Poor guy! He got nothing! But, it was all made up by the grilled hot dogs, fries and Birch beer.
The excitement of the day was that Jeno caught the biggest fish at the derby. It was over 7lbs. Angelo was so happy for his brother. Jeno won a new fishing vest and a bunch of tackle. Lucky Boy! Looks like we are having Fish for supper tomorrow.

Another Day in Angelo Land.......

I never thought that the weather would become an issue on how our family's daily life would be. Angelo's personality is effected by all aspects of the weather system. We had to walk to the bank yesterday and I felt like we were doing a rewrite on the movie "Sybil" Angelo went from being really nice to obnoxious to angry to wound up than to the (as I call it) the "one flew over the coo coo nest laugh" That was when his older brother started to walk waaaaaay ahead of us. We did make it back home after a few detours (the sand box at the park does wonders) and this behavior continues til it starts to rain. Than "poof" my little toad turned into a handsome prince again. We read books, played games and he even wanted to do some school work at night! It is raining pretty hard today and he is still sleeping. Ahhh, the sound of silence! My coffee taste so good! Preparing myself for the day.

He proved me wrong

Wouldn't you know after my pity party yesterday about not getting enough sleep.....Guess who slept through the night. I am hoping he did and I was not just so tired, I passed out all night. Going to have to check the house for any evidence he may of been up and around. LOL! Before he went to sleep last night his eyes turned red and started to swell like he was having an allergic reaction. Angelo kept rubbing them and that didn't help the situation. I gave him some antihistamine and it seemed to help. Oh, hey maybe that put him to sleep. Hmmmmmm okay, bad mom thought. I can't give it to him every night. But, it was a wicked thought. Just counting the days to CHOP.
On a brighter note, he is a little ray of sunshine today. My what sleep can do!
Just a FYI: Mr. Clean Magic Eraser does take out magic Marker. Angelo drew me a Masterpiece yesterday. hee hee Oh, he is a skunk! But I love him more than life itself.

Added some photo's

Just added some photo's to our blog. Angelo is helping me pick the ones he likes best. We have more recent ones to add later.

Another sleepless Night

Angelo had another one of his sleepless nights. He generally will wake up around 2 times and go back asleep. The last few nights he has been up and will not go back to sleep. I guess I get to go through the day in another fog like state. I remember when I was younger, I could dance all night, stay up til 4am and then be at work by 8:30am. Without a bag under any eye! Today it looks like my eyes have their own set of luggage. Funny how children change you. Having Angelo is like having an infant for the past 9 years. I now have total respect for those women with a lot of children. I can count on one hand how many times Angelo and I have slept through the night since he was born. We have him on melatonin but it only puts him to sleep. It never keeps him asleep. I am hoping to be able to address this when we get into CHOP. Last night, I was ready to just start crying over the non-sleep issue, then Angelo looks at me and says "You know Mom, you are my best friend and you always take care of me"! Whats a girl to do??? Well, this girl curled up with him on the recliner and watched the Disney Channel at 3 in the morning until he feel back asleep. I know that God does not give you anything you cannot handle but a little extra sleep would sure help my outlook on the day!

Tuesday, May 13, 2008

Today I decided it was time to share my family's life with our son, Angelo. Angelo was born on 02/16/99 with a rare genetic disorder called Williams Syndrome. Williams syndrome is a rare genetic condition (estimated to occur in 1/7,500 births) which causes medical and developmental problems.

You can look up this condition at http://www.williams-syndrome.org/ for further information.

I knew the moment he was born that there was a problem. Everyone had that "look" on their face. When they said 5lbs 13.8 ounces, I thought "Oh, no that can't be right" I have the big fat babies. My first son, Andrew was 9lbs 11 oz and Jeno followed in the same weight pattern. Jeno at 4 mos was 22lbs! So you can understand the surprise at this little peanut with a full head of white/blond hair. It stuck up and he looked like a little chick. That was the day our life changed.

Angelo's health has always been relatively good. We has the ear tubes (6 times) and he has pulmonary stenosis. Each year we wait for the heart operation but each year no change (Thank you, God)! Angelo is now 9 years old but is still around the kindergarten stage. His emotions change with the wind. He has what they call "emotional letdown". Does not make sense since he has no emotional letdown. He is either up or down. No in between. He has not started medication yet but soon to be evaluated. He has also been diagnosed with PDD, ADHD, OCD, SEVERE ANXIETY, IQ of 60 and too many others to list. I will get to each problem as they occur.

Angelo has changed the lives in our family and everyone he touches. He has a true love of life. He can see amazement in the beauty of a sunset (he thinks God makes them just for him) and no one is a stranger. He will say "hi "and smile at everyone. He is obsessed with Tornadoes and Trains. He can tell you the tech terms for anything he obsess with but still cannot write his name. He can get on the computer and find his web-sites but still cannot tie his shoes (thank goodness for Velcro) It amazes me on the vocabulary he uses. He uses words that I can hardly pronounce! and he knows what they mean. But, he still needs me to help him in the bathroom and with daily hygiene. It seems with Angelo, we have around 5 kids in one. All a different age group(age 4-9).

Someone once asked me if he could be healed of this genetic disorder would I want God to do this? Yes, most definitely! But, I also know that Angelo has a purpose here on earth. Would I want him to have less anxiety? Yes, but I would never want him to loose the excitement of life. The pure joy I see on his face everyday. The unconditional love he has for everyone. I know that as his Mother, he was given to me as a gift from God. God has in trusted him (and my other children) to me to protect and teach him the right path to follow. Funny thing...I feel that Angelo has taught my husband and I more lessons on life than I can count. He is my "Special Little Angel" here on earth.