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.