Chapel

Jack's preschool has a monthly chapel visit where the school director leads the kids through a few bible verses, they sing some songs and then get an opportunity to participate. Jack's class was going to be singing a song so I arranged to attend. It was short but sweet.

Jack was invited to come up and help light the candle. He was very proud.

Mrs. Tuscany read to them about Jesus and why we celebrate Easter.

She then proceeded to explain Easter by using a felt board and making sure to use words the children could really understand. *sadly, my camera was really struggling in the low light of the chapel.

Here is Jack's class singing their Easter song.

April 3rd

Jelly Beans

I like to leave "things" i.e. worksheets, coloring sheets, etc. on the kitchen table at night so that the boys have something new and fun to do when they wake up in the morning. I left this jelly bean number/coloring match worksheet a few weeks ago (well, actually in March) and I was so impressed with how well Jack did with absolutely no adult instruction. That night we colored around the word with the corresponding color which was next to the number inside the jelly bean (does that make sense?). This was the first time I had given him one like this and well as you can see he had no trouble at all. It was actually complete by the time I got out of the shower. He was VERY proud of himself.

It really wouldn't have been any big deal at all if he wasn't able to figure it out, but I have to admit that I was pretty happy that he was able to. Jack is starting kindergarten in a few months and with the proposed shortened day (8-11:20) and the increased class size (from 20 to 30 kids) we worry a bit about the learning environment. We know that we as parents will need to fill in where his school is falling short and thankfully I am confident that I/we can do it. However, it does ease my heart knowing that he is entering school with some good skills.

Okay, I'm done bragging, but what's a family blog for if not to brag about your kids a little :-)

I just realized

that the last official family post with pictures was from St. Patrick's Day. What in the world? That was mid-March. How do I let myself get so behind?

The kids are doing so well and getting so big. I've got great video of the boys riding scooters and their new skaetboards. Adorable video of Annabelle playing peek-a-boo.

I so wish there were more hours each day to get things done. Oh well, at least we are having great moments and that I am capturing some of it with the camera. Especially since this memory of mine is starting to fade.

Can you believe it's almost June? Where did the year go?

National Health Reform Delivers New Protections for Individuals with Spina Bifida

On Tuesday, March 23, President Barack Obama signed into law the Patient Protection and Affordable Care Act (PPACA, Public Law 111-148), a massive overhaul of the country’s health insurance system that will extend coverage to more than 30 million Americans and dramatically affect how health insurers and plans treat the people to whom they provide coverage. Spina Bifida Association (SBA), collaborating with its partners in the National Health Council, worked for years to ensure that national health reform specifically addressed the needs of individuals living with disabling, chronic, and/or life-threatening conditions, including the estimated 166,000 individuals across the country who live with Spina Bifida. SBA is thrilled that the final bill contains numerous provisions that we have long-advocated have become the law-of-the-land, including specific protections for people with pre-existing conditions.

By the end of this June, high-risk insurance pools will be created to make insurance available to individuals with pre-existing health conditions. By mid-September of this year, insurers will no longer be able to exclude children with pre-existing conditions from coverage under their parents’ insurance, children will be able to stay covered under their parents’ insurance plan through age 26, and lifetime limits on insurance benefits will be prohibited. By the time the law is fully in effect in 2014, health insurers will no longer be able to refuse to sell or renew policies because of an individual's health status – including current medical conditions or health history, genetic information, disability, or other health information – or to exclude coverage for an individual of any age with a pre-existing condition. Insurers will not be able to charge higher rates because of an individual’s heath status or gender, and they will be prohibited from imposing any annual limits on coverage. To learn more about specific patient protections for people with disabilities and chronic conditions please read Health Care Reform: Twelve Key Changes for Americans with Chronic Diseases (PDF)

The health reform bill also contains new programs and funding to support individuals living with disabilities and chronic conditions and makes critical new investments through a Prevention and Public Health Investment Fund focused on improving and protecting the nation’s health through community-based efforts. Also, a new interagency council will be formed to establish a national prevention and health promotion strategy. In addition, the new law increases Medicaid payments for primary care physicians (pediatricians, family physicians, and internists) starting in 2013, raising rates to Medicare levels by 2014; this change should help increase access to health care providers for individuals in the Medicaid program.

These critical changes are cause for celebration, as they should improve the lives of people with Spina Bifida and help promote and protect the public health. However, these new protections do not mark the end of our advocacy efforts; enactment of this law is just the first step in what will be a very long implementation process. Federal agencies will be tasked with putting the provisions of this law into action, and Congress likely will make adjustments in the months and years ahead. SBA will be closely monitoring the law’s implementation and tracking the development of the new programs to ensure that the needs of individuals with disabilities are addressed, and that folic acid awareness and education efforts are incorporated wherever appropriate and necessary. Moreover, SBA will continue to seek annual increased funding for the National Spina Bifida Program continues; the need for advocacy in Congress remains, as each year federal elected officials determine funding levels for Spina Bifida-related initiatives such as research, quality of life programs, and the National Spina Bifida Patient Registry. To learn more about SBA’s advocacy efforts, visit SBA's Advocacy and Public Policy Priorities section.

Here's a link to this article online

Latest update on Brent (Saturday)

After you read Ed's update below you will see why I am SO very proud of my sister. We are so glad that Brent is once again home with his family to continue his recovery. Thank you for all of the prayers and well wishes for him - it means so much to us.

Hello everyone

It is our hope that this update finds you all doing well in your lives. Our family is doing much better now that our Brent is home again. The doctors confirmed and identified the infection that caused his headache and sickness on Mothers day.

A nurse came to the house today to teach Mingie and I how to give Brent his meds. The antibiotics are given through a PIC line in Brents arm, one medication is given as a shot twice a day and others by mouth. He will be evaluated each week concerning the infection. Brent is happy to be home and continues to have a very positive attitude about everything. He will continue therapy starting next week and is determined to work hard and do well. Its so good to have him home!

Please pray for my sweet Mingie as the new plan for home care is pretty over whelming, but as ALWAYS she is and will again rise to the occasion and do what she has to do to care for our children. I was afraid she was going to pass out today when she had to give B his first shot, but she handled it very well! I am very proud of her!

Thank you to ALL of you planning the fundraiser at Peppinos. It is shaping up to be a terrific evening. We are very grateful to you ALL. Are there any rules against our Family bidding on the silent auction? LOL The items are VERY COOL. Mingie and I will plan on attending and Keith and Amanda will care for Brent. Hope everyone has a nice weekend and hope to see you ALL soon.

God Bless you ALL

Love always,

The Sirignano Family

An evening of learning

I'm so happy that I was able to make it to the Staying Present with your child seminar tonight. It was such an uplifting and encouraging evening. It really is such a pleasure to be with like-minded mothers sharing stories and supporting one another.

Thank you Branden for bathing and putting all 3 kids to bed - I love you!

This poem was printed on the back of our handout and it touched my heart so I thought I would share it here. Wishing each of you a wonderful weekend with your families.

If I Had My Child to Raise Over Again
by Diane Loomans

If I had my child to raise all over again,
I'd build self esteem first, and the house later.
I'd fingerpaint more, and point the finger less.
I would do less correcting and more connecting.
I'd take my eyes off my watch, and watch with my eyes.
I would care to know less and know to care more.
I'd take more hikes and fly more kites.
I'd stop playing serious, and seriously play.
I would run through more fields and gaze at more stars.
I'd do more hugging and less tugging.
I'd see the oak tree in the acorn more often.
I would be firm less often, and affirm much more.
I'd model less about the love of power,
And more about the power of love.

What a blessing my babies are! Tomorrow is going to be a great day!

My nephew is back in the hospital

Here's the latest update on Brent.

On Sunday morning Brent was taken to Mission hospital after complaining of a headache and then vomiting several times. He was admitted immediately and during the course of the day was cared for and had several tests, a CT scan and later an MRI. Through these images, doctors detected fluid on the right side of the brain and yesterday Brent had surgery to evacuate this fluid. The surgery went well, however the fluid turns out to be an infection and now Brent will be treated with antibiotics for about 6 weeks and will remain in the hosp probably for about a week, The doctors will analyze the infectious materials and determine the best medication to treat Brent. He is once again in the care of the amazing team at CHOC in Mission hospital,

Please pray for God to guide Brents doctors in determining the best medicine to treat Brent and that he can be free of infection. Please pray for Brent to remain strong in his faith and to continue his positive attitude towards recovery. Thank you so much for your prayers!!

God Bless ALL of you

Love Always

Ed and Mingie oxox

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Thank you

Thank you to those that prayed for me and my family during this past week.

Thank you to those that sent me personal e-mails or notes through my blog and Facebook.
Thank you to those that encouraged me when I started to get crazy nervous about reading at the funeral.
You are all wonderful and thoughtful people and I feel so blessed to be surrounded by such kindness.

The rosary and funeral service for my Grandmother a.k.a. Wella to many was beautiful.
Thank you to those that came and to those that helped and offered to help.
Our boys were wonderful. Just like little men - strong and loving.

I am thankful for the many wonderful years I had with her and all that she taught me.
My sadness has subsided and has been replaced with peace in my heart.

If you are able, I encourage you to give your Grandmothers an extra hug and kiss this Mother's Day.

You will be missed

It's been a week now since my Wella went to be with the Lord.
I know she is resting comfortably now and I am thankful for that, but I"m still sad.
I'm sad that I no longer have her with me.
I am sad that I can't share stories with her or hold her hand anymore.
I am sad that she will not get to know and love my sweet Annabelle.

She was a good woman with a strong love for her family.
She absolutely adored the boys. She loved all of her grandchildren and great grandchildren. Family was important to her.

She taught me so much and shared so much of herself with me without ever asking for anything in return.
I will cherish every memory I have of her.

My dear Wella, I know that you are dancing in heaven with Papa.
Please know that you will be forever missed but never forgotten.

I love you very much!