Friday, May 21, 2010

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?

Wednesday, May 19, 2010

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

Saturday, May 15, 2010

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

Friday, May 14, 2010

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!

Wednesday, May 12, 2010

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

Thursday, May 6, 2010

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.

Tuesday, May 4, 2010

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!




Monday, April 26, 2010

Brent's Home Visit yesterday (4/25/10)

UPDATE ON BRENT FROM MINGIE AND ED


Hello everyone,

What a beautiful day it was today! We were allowed to bring Brent home today for a trial run. We picked him up from St. Jude hospital after breakfast and were to have him back promptly no later than 8:00pm. We returned to the hospital at 7:59 pm. LOL Exactly one minute to spare!

It was so great having Brent home today with his family and we are now looking forward to Friday, because he will be coming home to stay.

Brent no longer has restrictions regarding his diet and really enjoyed Mingies spaghetti dinner tonight. Her sauce is the best!! Brent continues to work extremely hard during his therapy sessions at St.Jude as part of their in patient rehab program. We have a meeting with the doctors on Wednesday, at which time we will discuss the best options for Brents out patient therapy following his return home.

Brent continues to improve daily, but the doctors tell us that he suffers from a condition known as Aphasia. The doctors say that with continued rehabilitation a person can improve to the best of their ability. Brent is walking at times, with the aid of a walker and a guide person, but we are told now by the doctors, that his difficulty walking is not a physical issue, but rather is a result of the injury to his brain. His right side is still improving, but he does have issues with motor skills and has impaired vision in his right eye. When he returns home he will require 24 hour care.

Despite these challenges that lie ahead we feel extremely blessed to have our beautiful son with us and are so excited that he is coming home. Upon his return home our Family will request that friends who would like to visit Brent please call first. We know he is very excited to see ALL of you.

We wanted to thank you ALL for eating at Baja Fresh on Tuesday and for continuing to Love, Pray for and support our Family in so many ways. We also are hearing of so many things people are doing behind the scenes and we THANK YOU from the the bottom of our hearts. Your efforts of kindness and generosity to our Family are greatly appreciated. We truly hope this message finds you ALL in good spirits. May God Bless ALL of you!

Love Always

Ed and Mingie oxox

Friday, April 23, 2010

Brent's AMAZING progress

I am so thankful for the wonderful visit I had with my nephew Brent today. He is truly amazing! There is no question that God has truly blessed our family. I honestly, do not have the words to express how blown away I am by his tremendous progress. His beautiful smile, the sparkle in his eyes and the happiness in his heart today moved me to tears. I could barely drive home I was so emotion filled. I will be forever humbled and amazed by his miraculous road to recovery. What an inspiration!

Brent was transferred a week and a half ago to St. Judes in Fullerton where he is being treated at their Regional Brain Injury Center. Here is the post from Ed on Brent's 2nd day at St. Judes.

UPDATE ON BRENT - 4/15/2010

Hello everyone,

The transition to St. Judes was a very smooth one for Brent. I think we were more nervous about leaving the care of CHOC than he was, at least I know I was. The team at CHOC is our Family now and leaving our new friends was not easy, however it was time for Brent and our Family to move on to next phase of recovery. We will certainly keep in touch with our new friends and update them on Brents progress.

The team at St.Judes is working with Brent daily and he continues to improve. His verbalization is improving and he is able to use his right side more each day and is getting stronger. He has even walked with the aid of a walker, during Physical therapy. Day by day Brents determination is very evident as he regains his independency and he continues to work very hard towards his goal of coming home. We do not know yet when that will be, but we will expect that after Brent comes home, he will then participate in an outpatient rehab program for many months and a educational program designed for brain injury patients. where he will continue to improve his reading, writing, understanding and problem solving skills. We are very encouraged with his progress and THANK YOU ALL for your prayers and SUPPORT during this time and we Thank God that Brent is here with us.

Whatever Gods plan is for Brent and our Family, we will continue to follow His lead and let Him guide us in our lives. May God Bless ALL of you and yours, as he has done and continues to do for our Family.

All our Love

Ed and Mingie

Thursday, April 15, 2010

Excited and Inspired

That's what I am right now! I love it and it makes me not able to sleep - not that I ever go to sleep before midnight. I attended a meeting tonight that was essentially establishing the frame work for a new parenting forum that will be run by four super amazing teachers/mentors. It's going to be on Thursday nights (whoo hoo - a night out!) and it will be a specific topic each week.

Here's the mission of the new group:

The mission of the Long Beach Parenting Forum is to create a supportive and educational community for parents to discuss and share the joys and trials of parenting, based on weekly topics and guided by parent educators.

It may sound silly to be so excited about it but I really am. I was lucky enough to attend a parenting class on a regular basis with Benjamin before I was pregnant with Annabelle. It was a weekly parent & child class. The first part of the class was observation then group discussion and it always ended with outdoor and sometimes water play. It was great! I found it so helpful - it helped me to see (find) the daily joy in parenting. Each week I would leave renewed and excited to try out a new parenting techniques or just get back on track to becoming the parent I wanted to be. That's actually (sort of ) the title to the book we used. It's a great book and I highly recommend it.

This class Benjamin and I took was taught by one of the ladies that will be facilitating these Thursday parenting forum. She is really great and it was wonderful to see her tonight. I hadn't seen her since I left her class right after Thanksgiving 2008 (when I got pregnant with Annabelle). It was great to reconnect. It's also nice to be part of a community of mother's who care so much about one another that I didn't have to explain where I had been or why I had sort of dropped out of society for a while. She knew a lot about Annabelle and the journey we have been on this past year. She's excited to meet her and is happy that I will be attending the parenting forum.

Another of the facilitators was Jack's former preschool teachers at LBCC. I absolutely adore her and am super excited to be able to see and learn from her on a regular basis. She is a good friend, great listener and mentor.

It was a good night tonight. I love really being a mother. I am so blessed to be a stay at home mom and although some days can be really challenging I wouldn't trade them for anything. I am so thankful that I get to wake up each day with my beautiful babies and snuggle them. I am so thankful that I get to play with them each day - all day! I am so thankful that they love me the way that they do. I am so thankful for each of my children and their uniqueness!

For me, I know this parenting forum will help me in many ways, one being to slow down and focus on my parenting style - what it is and what I want it to be. It will help remind me that my Jack & Ben are typical, happy, "wild" little boys. It will help me to parent each of them individually based on their individual personalities and needs. It will bring me back to that community of mom's who I share the same parenting values with.

Well, I am still excited and inspired but it's almost 12:30 am now and my "typical, happy & wild" little boys will be up early looking to play with their mommy so I better get to bed.

I wish you all a wonderful day with your children tomorrow. I was reminded of the Glad game (from Pollyanna) from an online friend this week - we played it today and it was fun! If you read this post (and have an extra moment) I'd love to hear from you - What are you glad about today? What do you love about being a mother?

Wednesday, April 14, 2010

It was a fun GREEN day!

We started off the morning with some St. Patrick's Day themed breakfast


Jack thought breakfast was pretty cool!


Although, I was unable to turn Annabelle's milk green (mommy's milk only comes in one color). I did give her a GREEN sippy cup to try. The cup is literally twice the size of her whole hand so she isn't doing very well with it yet, but, she likes to play with it.


Jack really enjoys doing any art project that involves glue. Seriously, who doesn't?


The boys had fun gathering their "supplies" from the backyard. They actually cut he grass with their scissors - so cute!


Benjamin was VERY proud of his pile of greenness! Here is the finished product ~ a super cute shamrock made of natural materials (grass, leaves, dirt and I think a bug or two)


Annabelle was having a blast playing on the floor


Looking oh so cute!


After a fun morning at home Jack went onto school from 12:30 - 3:30. When Ben, Annabelle and I picked him up he was super excited to learn that we were headed over to our friend Miss Cathy's house to play. FYI - she doesn't go by Miss Cathy, Miss and Mr. is how we encourage (strongly) the children to address adults.



A little splashing in the water to stay cool

Click HERE if you want to see what Annabelle got to do after her fun, GREEN day in the sun.

So behind!

I am so behind on posting that I think I might just start posting pictures. I have no idea how people stay on top of this. I LOVE reading other blogs and am so impressed by their timeliness.

I am just going to start posting our family "moments" and the pictures and hopefully I will add more details about them later (dreaming!!!) This is what I would do with scrapbooking. I'd leave spots for journaling, but never would go back. So sad, because sometimes you really need those details. My memory sure isn't what it once was (ha ha). I'm getting old!

I just want to get up to date!!! I want to live in the moment and I can't if I'm always blogging about last month.

Ok, blog rant is over.

Tuesday, April 13, 2010

Update on Brent - 4/8 & 4/13 (emotional & exciting!)

Here's the latest on our nephew Brent. He is such a fighter and an inspiration!

UPDATE ON BRENT FROM MINGIE & ED - April 8, 2010

Hello everyone,

The days go by faster than ever before! God continues to answer our prayers and Brent is progressing daily. He is very determined during his therapy sessions with the wonderful staff of CHOC and Mission hospital. Mingie and I would like to thank our parents for spending so much of their lives the past two months supporting Brent and counseling and caring for Mingie, Eddie and myself. Keith and Amanda have also been amazing! Papa Sirignano tells Brent that he is his hero. Papa continues to encourage Brent to use his right hand and Brent continues to work hard to please his Papa. Its very touching to witness this special bond. We are very blessed to have such caring and loving parents/grandparents in our lives.

It is clear to see that Brents conditioning and competitive spirit prior to the accident is playing a huge role during his rehabilitation sessions. Being part of the ET basketball program and years as an athlete are certain to help Brent with the challenges that lie ahead.

A HUGE THANK YOU to ALL who have supported our Family with prayers, meals, fundraisers and very touching messages and more! Your Love and support of our Family touches our hearts and though we may not have contacted you personally, or replied to a message, we know who you are and we will see you again and cant wait to give you ALL a big hug.

May God bless you and yours with good health and happiness.always!

Love Ed and Mingie, Eddie

___________________________________________________________

UPDATE ON BRENT FROM MINGIE & ED - April 13, 2010

Hello to ALL of you Brent supporters,

Mingie and I and our Family are extremely happy to report that Brent is continuing to make progress. After Brent passed his swallowing test and got a taste of real food It didn't take him him long to remember how to eat. He is now transferring from the bed to a wheelchair and eating real food. The G tube has been removed. He remains in the care of an amazing team of individuals at CHOC, at Mission hospital.

Brent is also talking now. He had mouthed the word mom prior to speaking, but his first vocalization happened when I mentioned Mariahs name and he responded by saying "Mariah". "I said yes, Mariah thats right" and then he held his hand up to his ear simulating a phone call and said " call her". I about fell out of my chair scrambling to get my phone. We called Mingie first and when she answered Brent said in a very quiet voice "hello this is Brent" and of course Mingie was overcome with happiness. To hear his beautiful voice again was the sweetest blessing ever. Mariah called when she heard of Brents request and spoke to Brent. It was quite a night. Thank you for returning our call Mariah! You always were and always will have a special place in our hearts and of course in Brents.

We transport him from his room in the hospital, in a wheelchair to therapy and he is working very hard to regain his strength and motor skills. His right side is improving, but is still much weaker than his left side, but he is working hard daily to improve. Please pray for his right side to continue to heal and for him to walk again on his own.

The doctors have told us that even bigger challenges lie ahead with many months and or years of therapy that Brent will require to relearn many skills, however, we feel VERY BLESSED right now that Brent is back with us and would like to THANK ALL of YOU from the bottom of our hearts, for your MANY MANY.....prayers and especially THANK GOD for answering our prayers!

Love Always,

Ed and Mingie and Family

Friday, April 9, 2010

Two Peas in a Pod

I love that Benjamin and Belle love each other as much as they do.
He's really quite gentle with her for a 3 year old.
He loves to show her how things work.
He enjoys laying on the floor and talking with her.
She thinks he's super funny and of course she loves the one on one attention from him.


March 13, 2010



March 25, 2010

I was cooking dinner and I walked around the corner to find the two of them like this. He was actually trying to teach her how to use his video game - so cute!

April 1, 2010

Their bond grows stronger every day and I couldn't be happier about it.

Monday, April 5, 2010

Update on Brent from last week

Brent continues to amaze us with his strength and determination. We had a wonderful visit with him last Sunday (3/28) but because Jack has been sick and there are some new restrictions we haven't been back to the hospital. However, we continue to get good daily reports from my sister and Ed as well as from my parents. Here is an update the Ed wrote last week.

A message about Brent from Ed and Mingie

Hello everyone

Since our last update Brent has now passed the swallowing test and has been introduced to more soft foods. A true blessing!! Thank you for your prayers!

On Sunday afternoon Mingie and I stopped by the fund raiser to say hi and boy what a joy it was to see EVERYONE. Thank you so much for taking the time to come out and support our Family.

We then headed back to the hospital to be with Brent and he got a visit from his cousins Jack, Benjamin and Annabelle. Brent has a special bond with his cousins and they made Brent very happy. It was very special to have them there and we all felt the Love between them.

Well thats it for now. Have a good week, God bless you ALL and please continue to pray for Brent's speech, the recovery of his right side and for our Family to stay strong!

Thank you ALL so very much for EVERYTHING!!

Love Ed and Mingie

Sunday, April 4, 2010

Dyeing Easter Eggs

The boys and I were really excited to get started. Dyeing the eggs is always so much fun. I unfortunately got busy with Annabelle and didn't get to do any, but the boys and Branden had a lot of fun.





I'm tempted to get another package and dye some just for fun.
Maybe Branden and I will dye them after the kids go to bed. Shh...don't tell the boys.

Saturday, April 3, 2010

Happy Easter

May the beauty of the season
surround you...

The miracle of Easter
inspire you...

And the joy of the Lord
dwell in your hearts all year.

Friday, April 2, 2010

Little boys love hats


Especially if they are their daddy's hats

Thursday, April 1, 2010

togetherness - March 13th

After a fun morning, what's better than spending the afternoon hanging out on the couch with your brother and sister.

.

Yes, as if you couldn't tell - they are watching TV in the picture above. It's amazing how they turn into little zombies when the TV comes on. This particular show was Go Diego Go. I actually think Annabelle liked it.