Happy Halloween

Sam is on the mend thank g-d... Everything has been quiet for the most part this week. Sam is back on his usual therapy regimen. He is more playful and much happier. Thanks for your thoughts and prayers they work.

Daddy's Week Off And Other Things...

OK, so Scott was supposed to write all about his fabulous week at home with Sam and I. But as I am sure you all know there is never a dull moment here so he has not had a second to write. We had a really great week last week being all together. We brought Sam to the zoo and the aquarium, we had music therapy, played and had a lot of fun. It really was so nice having Scott home with us. I know how difficult it is for him to leave us every morning. Scott so badly wants to be a part of Sam's daily activities so it was nice for him to have the opportunity last week.

But now its this week and all hell broke loose. Just when you think you are in the clear and Sam is no longer in any danger of mega crisis you get slapped in the face hard with some very close calls. It all started Tuesday night at about 9:30pm. Sam was sleeping and literally woke up crying a cry I have never heard before. It was this awful raspy breathless cry that makes you want to gasp for air yourself. And his chest... His chest was totally convulsing. So we immediately gave him a double nebulizer treatment and he began breathing close to normal. But four hours later the same thing happened. Then the intervals between nebulizer treatments became smaller and smaller. We obviously took Sam straight to his pulmonologist the next morning. The doctor was on the fence about admitting us to the hospital but we decided to play the wait and see game with precautions of mega medication and breathing treatments. Well, pretty much as soon as we got home things started to spiral down hill fast. We thought that if we gave Sam a breathing treatment we would be able to take him to the ER ourselves. I contemplated calling 911 because if they saw Sam in enough distress they would have taken us to a really yucky hospital instead of the one his doctors are at. So after his breathing treatment he seemed OK enough to make it to our hospital. BIG, BIG, BIG MISTAKE!!! If you get anything out of this blog please get this. If your child is having some sort of respiratory distress call 911. DO NOT take your baby to the hospital yourself. It is just not safe. Once we got to the hospital Sam was in a really bad place. We pulled up in front of the ER I grabbed Sam and ran straight into the ER screaming my baby is in respiratory distress. I basically threw Sam at the attending and collapsed crying. This is the first time I really lost control. The ER staff worked so quickly and calmly Sam was fine within seconds. But we were not out of the woods. He continued to have these crazy distressing episodes for a few more hours. After his meds kicked in he started doing much better. We are home now but Sam is still pretty sick. Stable but sick and miserable. Scott and I basically have not slept since Tuesday night. Sam has some serious lung issues that need to be addressed within the next few weeks after his illness clears up. We will keep everyone posted when we know more. But for now if anyone comes to our home we need to be on super OCD mode about cleanliness and illness. So our rules are the following. Shoes off the second you come into my house, hands washed, if you even think you have a cold stay home, if you think you were near someone with a cold stay home. We do not want your germs here. All therapists leave your toys in the car. Only use our toys and books, gloves, equipment etc... Sam's lungs cannot handle any kind of irritation so no perfume either. We need to be as careful as possible. Thanks for all of your support.

TGIF

I know its a little late for this but the day has been busy. So movie buffs get ready... Its time to find out who the real saps are. What is the best tear jerker movie ever made and why???

Thank You !

This entry is long over due. I am dedicating this entry to all of our friends and family. Scott and I feel truly blessed to have such supportive family and friends. We certainly could not do what we do everyday if it wasn't for all of you. Just knowing that we are in every one's thoughts and prayers helps us to lift our chins and get through another day. So many of you have demonstrated such tremendous acts of kindness and we are humbled by all of them. We definitely feel loved by all of you.
We appreciate that no one has ever given up on us. When Sam was first born I was in a very dark place. I wanted to take my child and hide in a closet some where. I didn't want to see anyone and certainly did not want to talk to anyone. And those of you that I did reach out to came running to me. And those of you I didn't stood back and waited patiently for the word. Sometimes just standing back and being patient takes more effort than actually doing something. I acknowledged that.
Some days I am just so positive and some days I am so negative and some days I am in between. On the very negative days I pray that god gives me the strength to get through those moments. And then a tremendous gesture from one of you let's us know that we are not alone. Sunday I was having a little bit of a down day. Scott's parents came over and brought lunch from my favorite place. I worked at this restaurant through high school and College. When David (the owner) found out that the food was for us he insisted that he treat because he knew how hard it would be for Scott and I to go there. This act of kindness touched us so deeply. It let's us know we are not alone. It reminds us that no matter how hard our struggles are you all are holding our hands through each and every day. The love that you all have for us is so incredible it helps carry us through each moment with hope and with out fear. So on behalf of Scott, Sam and myself we say thank you all so very much!!!

TGIF

If you were stuck on a deserted island and you could only have 5 CDs with you (pretend there's no such thing as iPods) which albums would they be? Remember these are those timeless albums that you can listen to over and over again...

Help Sam!

Please take 10 minutes out of your day to help my son Sam and other children like Sam. This is very important. Most children with special needs do not get the services they need because of a lack of funding. I am not asking for money. I am just asking you all to write letters. The directions are below. Its very easy. Please help Sam!

Here is a sample letter for you to pass along.

Email: contact@livingwithcerebralpalsyproject.org
Please send letters to:Living with Cerebral Palsy Project
c/o Alicia Khlass (please include my name on the envelope)
6093 Sunset BLVD #132
Hollywood, CA 90028
Please contact Alicia at (323) 962-7405.Please address the letters to the following:
US Senate ~ US Committee on Health ~ Senator Edward Kennedy, Chairman
ABC ~ 2020 & Good Morning America with Diane Sawyer
Oprah ~ Oprah Winfrey
NBC ~ Dateline NBC & The Today Show with Ann Curry
CNN ~ Dr. Sanjay Gupta & Larry King
Dr. Phil
Montel Williams
Maury Povich
Media Organization

Form Letter Here:
Dear (type in each name listed above 9 letters.)I'm writing on behalf of ( name of the child or all children), who (has/have) Cerebral Palsy. I support the Living with Cerebral Palsy Project! Please tell her story and the stories of the other children and their families living with Cerebral Palsy everyday!I support increased CP funding from Congress for the CDC CP surveillance system, research for Cerebral Palsy, education for the public, continuing education for doctors and medical professionals, more therapy equipment, prenatal care & education and early intervention services for Cerebral Palsy.(Please add your personal sentences here, I got involved because..............) (Write anything additional that you would like here..) Did you know that more than 800,000 American children & adults have Cerebral Palsy right now? Cerebral Palsy not only affects the infant/child/adult, but it affects their family, friends, and our entire community. There is no cure for Cerebral Palsy and it symptoms are different in every child. Did you know that there are many children out there with symptoms, but they may go undiagnosed for years? They may not receive Early Intervention services that are crucial which can help to minimize their disability. Early intervention is the key to success. It is the most effective way for a child to overcome developmental disabilities and/or for them to learn new ways to adapt and succeed with everyday tasks. Please let their voices let their voices be heard!!
Sincerely,Your name
Your Address & phone number

You can find all the information about our project by clicking on this link:http://www.cafemom.com/group/7064/boards/read.php?post_id=1057011

TGIF

Any movie critics out there??? What is your favorite war flick and why??? Bring it on!

Scott's Pen

It took Bush six years to veto his first bill, when he blocked expanded federal research using embryonic stem cells last summer. In May, he vetoed a spending bill that would have required troop withdrawals from Iraq. In June, he vetoed another bill to ease restraints on federally funded stem cell research. Odds are that Hillary and Rudy will be running against each other. I know that everyone votes for what is important to them and I will be doing the same. I am a liberal republican which is why I like Rudy. With that said, he has been pandering to the conservative right of which stem cell research is a non-starter. I had a colleague at my former employer mention that had the US been funding embryonic stem cell research he may have been able to walk by now. With that said, when going to the polls, keep in mind what you want but also know what you will never get. In my opinion while we have conservative evangelical mvmnt controlling the republican party, you may get lower taxes, better defense etc but your friend's son and others that you know or may come in contact with may never walk, eat sit up etc. while you may have a few extra bucks in your pocket.Scott

Music Time

Sam LOVES music. So last Friday I arranged for Sam's favorite musician to come and do some music therapy with him. He was so intrigued with the guitar. He literally sat for about 45 minutes examining how Kathy's fingers moved up and down the strings. It was really a very special session because Kathy was one of the musicians at Sam's birthday party and she also sang to Sam while he was in the hospital as an infant. We had a lot of fun and we can't wait to do it again.