Bringing Home Myah

No More Entry..

2012-01-17T16:04:00.000-08:00

Well after 21 surgeries, they are no longer able to enter through this hard scar on her belly. The scar has become hard as a rock and the scar tissue is way to tough to get through. Scar revision is needed and so is some grafting...if you can see they have entered to the left of the scar a few times but they will need to create another entry point. And so we keep reminding her that the more a diamond is cut the more brilliant it shines..so cut away...

Happy New Year..

2012-01-11T08:01:00.000-08:00

Let me start out by saying the New Year will be great for us all, I can feel it in my heart. I have never really looked forward to a New Year but I am determined to make this one the best ever. Why? because we have been on a downward slope these last few months. Trying to mainstream Myah in school, balance her daily iv medical treatments and keep up with doctor appointments...and still incorporate my work in the community..I sometimes sit and am completely ovewhelemed. Then trying to figure out how to get to out of State Hospitals and manage my boys with school and sports..well mind baffling.

We are faced with going back to NYC for surgery. When? Well not exactly sure. I believe I will have to take the boys with me since Hank cant take off from work. Ideally, March would be the time to go but we need to figure out the cost of flights, hotels, food and car rental..Not an easy thing to consider with 5 of us going..

As for her health we have been treading water but if we keep on target with her medical plan then surgery is the next step. This will be her 22nd surgery since she has been home with us (3 yrs) .

We still do not know exactly what the future holds for our Myah, but we know God is working mightily in her life, in our life, and in those who have heard her story. God has big plans for Myah – that much I know!
Whatever the reason, I am abundantly thankful that God has brought our sweet girl into our family forever! God has changed us because of her story.
I once was lost, but now am found.I once was blind, but now I see!
I am completely unworthy of His Amazing Grace!

Since we are a Make -A -Wish foundation family we will the need to do what we can for those who cant. So we returned to Give Kids The World in Orlando and visited with patients who probably would not make it to see Christmas. We made crafts for them and sat and talked with their parents..but it was more like wiping their tears...Its a bond we all have like no other..The waiting for the other shoe to drop is what we call it ...

I love my kids and I am proud to say my boys have stepped up to the plate and learned everything I know on how to treat her medically and have been a huge help to me. We work like a fine oiled machine when in crisis. I am beyond proud of my clan. they fill in during the night when she wakes up in pain and soothe her back to sleep. They have been a reflection of me..PRICELESS !

Back from Hiatus!

2011-10-18T09:08:00.000-07:00

Ok, so I took some time away from blogging and from family..yes, I said family. with all that we have been through I found myself not in a good place emotionally. Hank agreed it was time to step away for a little and work on mommy. So I did. I went on a 4 day cruise with some friends. I definately needed to recharge and find my self identity. I believe at times we lose ourself. We have so many roles, mommy, wife, advocate...but we lose who we are...I was able to recapture my laughter and child inside. I felt horrible leaving. I felt defeated in doing so but in retrospect I am kicking myself for not have doing it sooner. If fact I am scheduling next years mommy getaway. Thanks to my husband for holding down the fort while mommy read a book in a hammock on white sandy beaches and nobody called out "mommy "...

Modeling Parenting Magazine Apparel

2011-10-18T08:57:00.000-07:00

ok I think she was done at this point...!

American Asian Magazine...

2011-10-18T08:54:00.001-07:00

Our wonton..

Dead End !

2011-09-01T17:15:00.000-07:00

When she was younger I wished she was older so I can rationalize with her..but now that I can rationalize and she understands whats to come..I wish she was younger and didnt have a clue...

the Statue of Liberty...

Myah girl !

I hate this face..the look of fear and the look to see if I'm going with her..

But I was not allowed...she she screamed MOMMA all the way down the hall...brought me straight to my knees...

In Recovery...

So we were scheduled without notice to the OR after going in for a follow-up doctors appointment..Nothing like getting caught off guard. But we felt that they were confident on what needed to be done and they spoke with such promise..I should of known better..I heard everything I wanted to hear..and just jumped...

Needless to say..in midst of everything the nurse tells us that they had to send an ambulance out to another hospital to borrow a machine that they needed for Mayh in the OR...WHAT? this is not like trading baseball cards..who the hell trades and swaps mid case..WHO? I hit the roof...anxiety was setting in and I was about to lose my Christian composure...I felt my NY truck driver mouth making its way to the tip of my tongue...

4 hours pass..and the surgeons came out and told us that they were not going to proceed any further...the facilty and staff are not equipped to handle a case like hers. they spoke to their colleagues in Miami Childrens and Joe Dimaggio hospital and they concur.

so you Quit? QUIT? Who the F quits? Well I am not quitting..I AM NOT QUITTING...

NOT QUITTING I SAY !!!!!!

Surgery today...prayers needed...this one caught us off guard

2011-08-31T19:10:00.000-07:00

When Parenting meets Education

2011-08-17T13:50:00.000-07:00

School attire said collared shirts...momma says a Halter collared shirt is more stylish !

of all days , she tied her shoes on her own today...a clear indication she was ready for school

1st Day of school..

walking the kids into school..

so I thought...Umm, WAIT FOR MOMMY !

Tomorrow is Kindergarten !

2011-08-14T11:11:00.000-07:00

The first day of kindergarten was always an emotional one for me. But I managed to make it through it with my 3 boys. It was a sure sign that my children were getting older and entering a new chapter in their lives. Everything that I have invested in them and how to treat others is going to be be put to the test. Feet to the fire!! But this year Myah starts Kindergarten and its a totally different emotion.

I stopped by the school to leave her paperwork. The moment I stepped out of my van, my stomach started turning. For her its NEW place, NEW faces, NEW voices, NEW smell...totally out of her comfort zone. Even though my 3 boys were in the same school they were in different grades. Myah would have to navigate and try to make her way with new friends that talk and start creating their circle of friends. How would she do with just flashing a smile..how far would it get her? Mainstream is not like her special needs class.

As I walked out of the building tears streamed down my face. Myah's paperwork paints a totally different picture than who she is. It reads THERAPY, PT, LANGUAGE THERAPY,SPEECH THERAPY, NOT VERBAL, SPECIAL NEEDS CHILD,extra time, extra effort, meds in nurses office, pager attached to child for potty reminder ect.. My heart ached as I thought of the perception that was painted of her to the normal person.

I got in the car and said "OKAY LORD, I AM TIRED OF BEING OUT OF MY COMFORT ZONE...can't I just feel an INCH of peace in my heart?!??! Just let me SIT in my peace of mind for just a moment. aaarrrggghhhh. He whispered to me, "you will sit in the peace that only I can give...not what this world can give you, and it is far greater than anything that you could ever feel from the world." So, that is what I am choosing to do...once again, sitting in HIS peace that is NOT of the world, and once again...feeling like an alien in my own skin. It is going to be good.....I just wish I had hindsight and could see the fruits now instead of later. ( I will never learn....)

The things that make her so fun are her smile, giggles, affection, activity level...I have no doubt that once she transitions in, she will follow what everyone else is doing...

Pray with me that her teachers will see her heart. That she will bring them joy from the first day. That they can smile and appreciate all that life has dealt her and feel the love that she truly brings to my heart each and every day.

And as I tell all of my kids...when I give them a K.I.S.S. it stands for

You are K..ind

You are I..mportant

You are S..pecial

You are S..mart

And I love you...

Happy 3rd 'Gotcha Day' Myah

2011-08-11T16:31:00.000-07:00

I can’t believe that it has been 3 years since we first held you in our arms. In some ways it doesn’t feel that long but in another way it feels like you have been here forever. You are a perfect fit and we can’t imagine life without you. You have come so far in 3 years. You have amazed us all at how easy the huge transition was for you. I can’t imagine how scary that was for you. There were so many different faces, smells, sounds and so many unfamiliar language and voices. We are so proud of you!

When I think back of 3 years ago my mind automatically comes to this picture. I am in no means a person who think’s that I take a great picture, especially when I was 80 lbs heavier then, but there is something captured in that picture that I forever be grateful for. Can you see it? You have to look close.

That tear rolling off my eyelid.. that is the ache of waiting three years for you melting away. The pain in my heart of missing so many different milestones is being replaced with such gratitude that I get to have so many other milestones with you. The ache of my empty arms went away instantly as I felt your chest rise and fall against mine. Every single bump and hiccup in the process became worth it the moment you were placed in our arms. You’ve made your Mama and Dada look at life through your eyes and it is so much brighter with you in it. We can not begin to tell you how lucky we are to have you in our lives.

By adopting a child and helping them reach their potential, they help us reach ours. An adopted child is not an unwanted child; to the contrary. They are a child who was searched for, prayed for, cried for, begged for; received by arms that ached, making empty hearts full. Love is meant to be shared.

Happy Gotcha Day Myah..we forever learn from your strength and your survival skills...but mostly how you embraced our hearts and made us a complete family...

Pictures of you ..on your 3rd year with us..

2011-08-11T12:54:00.001-07:00

Only place we could think of going

2011-07-09T18:43:00.000-07:00

As soon as Myah was released we stepped outside and we knew we had to go to church. We just had to...St. Patricks Cathedral

The kids held hands..Myah still a bit woozy but the boys held her up and they walked down the isle together..

i have no idea what Devon was saying in his prayers but he continuously kept wetting his finger in holy water..he was completely drenched by the time he was done..

Myah still having her hospital band on lit a candle for herself...

and the boys followed...Please Lord hear our prayer...

Recovery..

2011-07-09T18:18:00.000-07:00

Myah had 2 surgeries and then was sent down to have testing done while she was semi still sedated..The surgeries lasted about 6 hours. We all sat there and to my surprise the boys didnt move not once...they read magazines back to back like 4 times. Today was a proud mommy moment.

testing and more testing

She woke up in pain and was given some pain meds but I told her that if she wasnt well that she couldnt go home that they would admit her. Well she snapped out of it right away...Within an hour she was asking to get dressed and pointing to the door. She wanted out...

We met with a room full of surgeons to hear their findings and to tell you the truth...I heard the first sentence and the rest seemed to come across muffled. I looked at Hank and he was crying. How does one prepared to hear news that one is not ready to process. And right away you start hating the doctor...but what kills me is the doctors in Cincinnati and NY have 2 COMPLETELY different takes on treatment and surgeries to come. And what kills me even more is the doectors in NY were trained by the doctors in Cincinnati.

What we all agree on is that there are a slew of surgeries that need to be done. And one of them needs to be done relatively soon. So another trip to NYC...But timing, school starting, Hank not being able to take any more time off all come into play. I simply cant afford to take all the kids with me because we would have to fly. ...and here we go again..back to the drawing board...

Surgery Day..

2011-07-09T13:53:00.001-07:00

I'm not sure any of us got any sleep the night before. We talked about what was going to happen today and what to expect. The boys were excited to be on the front line with their sister. They got up, dressed and in the car by 4am...not a peep or complaint. we all just kinda went through the motions knowing what was ahead of us....

The boys waited with myah in the waiting room for her to be called in for prepping...they played in silence but the silence spoke volumes..

all suited up and standing strong...

and we waited ....

and waited....

and the time came when they called her name...

final kisses

Mommy scrubbed up and we waved goodbye to everybody..

NYC BABY !

2011-07-09T13:45:00.000-07:00

In a NY state of Mind...

The Make-A-Wish Foundation gave Myah tickets to the Empire State building with a simple note that read..."To the World you are One , but to us YOU ARE THE WORLD"..

walking to streets with my kids..Priceless...

and this is how they walked the streets..arm and arm...standing strong for their sister...

NY or BUST !

2011-07-09T13:40:00.001-07:00

Since we need to give Myah treatment every 24 hrs we needed to keep the time in mind. And if we stopped at a hotel we would need to rent 2 room because we are a family of 6..so Hank decided to drive 21 hours straight...we literally stopped for gas and 2 drive thru meals...we were on a mission...

Roadtrip !

2011-06-22T06:38:00.001-07:00

Well Friday we will be traveling out of state by car with 4 kiddos in tow, and I must say, it’s equal parts fun and nerve-wracking. I’ve been on so many roadtrips in my life and they were all amazing. I need to keep this trip into perspective..the reason we are going is for more surgery for Myah but the reason my kids are going is because they think its a summer vacation. Very hard to decide how to feel. I want to make it fun for the kids but all the while knowing that the only reason we are goong is for the fact that the hospital awaits our arrival. So as the kids are woohoo'ing as they pack the car, mommy is putting her poker face on and trying to be as excited but to tell the truth...I just want ot cry..but mommy still have to put one foot in front of the other...and look good doing it...thank goodness for make-up ..although my waterproof mascara has been failing me lately....

We get by from a little help from our friends !

2011-06-22T06:17:00.000-07:00

People amaze me everyday !

People that just see a situation and have the power to change it..But do they know how big a change it 'really' is? Probably not..To see my daughter have a device to use to communicate with the world is both joyous and sad. I decided long time ago that she would not use sign language. I wanted her to find a way to communicate with the hearing not to communicate with only people who knew sign. So having this device is the bridge we so desparately needed. She has sat hours upon hours listening to words and trying her best to repeat them. She is determined to write her letters. HOURS I SAY..she has not moved from the couch. And my boys have been waiting patiently to get their hands on it..but it has not happened yet.

I see her looking at pictures and dragging the pictures together to make a sentence and then listening to what she wanted to say..but trying to repeat it..I truly think this is going to be her ticket to speaking...

My thanks go to our donors and although there was a lot of crying going on when we met they have touched our hearts more than they will ever know..Thank you simply is not enough...

still standing in the storm

2011-06-13T15:29:00.000-07:00

Well NYC was nothing what we expected it to be. We went there with a medical plan in place and once in the OR we were faced with 2 other major issues that we had no idea about and were not prepared to even address. I think it's safe to say that I had a complete mental breakdown. Remember just sitting in the hotel and not being able to get dressed..just didnt want to draw back the curtains, didnt want the tv on...just wanted to sleep for weeks...but that was not possible. We are back in Florida...and expected back in NYC in a week and a half...this time my husband put in for leave at work..I can no longer stand in the front line and do this alone. I simply cant...As for Myah...she is running, smiling, and being the Myah we love so much...pain free and unaware of anything..just the way we like it....

NYC here we come !

2011-05-30T04:20:00.001-07:00

Today is Memorial Day and we are packing. Tomorrow Myah and I will take off to NYC for surgery. After many failed attempts here in Florida I decided that I needed to venture out and see what other mecca cities have to offer her. We usually go to Cincinnati Childrens Hospital but I wanted another team of doctors to access her. They will be prerforming some experimental procedures on her...there is not promise of success but we need to try. This week has been a tough week for Myah. She has been complaining of lower abdominal pain and she is extended...Doctors were notified and they are pepared for whatever it might be...So as I pack our bags to leave, I am also packing my boys bags so they can sleep at Grandma/Poppy's and there is not a dry eye in this house..Everybody wants to come with us, everybody is promising to be good if they do and I have the heaviest heart ever...

Please lift us up in prayer this week as I venture out in hopes of answers...this procedure will not be easy on her but together we will face them....

Thank you..

2011-05-25T06:15:00.000-07:00

It's amazing what a community can accomplish when we all come together. We had a spectacular event on May 6th. People I never met in my life came together for the better good. Comapssion was spilling out and a sense of family was felt. All the volunteers that came out to serve the food, decorate the tables, and set the tables, the bakers, the maintenance men, the Church, Remax of Stuart, family, friends and strangers...We all sat down as strangers but left as friends..PRICELESS!

Our message is clear...Please be an Organ donor..not just you but your children too..People are "DYING" to live...

It’s critical that we let you, our supporters, know how much we appreciated your support. Thank you for giving- In that same vein we recognize the economy and how difficult it is for all of us just living day by day and making ends meet. We have experienced first hand caring ,joy and sadness, but most importantly we have been the recipients of compassion from our community.Thank you for giving us back a little bit of strength. Forever grateful..Please think about being an organ donor..Please ! ..Love The Shpiruk Family..especially Myah

See you there !

2011-05-04T10:59:00.000-07:00

there will be Hot air Balloon rides....

The Grace Place Church
May 6th @ 6pm-8pm
Stuart,Fl

Thank you Re/Max of Stuart and The Grace Place Church for Paying It Forward. As much as we dont feel deserving of this we sit back and graciously accept. As our Pastor said "Perhaps this is God's way of providing for her"...Hope to see you all there and thank you for your donations..We are still standing in the storm....!

ps. we are really excited to go in the Hot Air Balloon..

Life-long treatment

2011-04-20T08:33:00.000-07:00

Everynight Myah has 2 hour treatment at night around 6:30pm. She will need treatment every night for the rest of her life..Saddens me to know that she knew how to prime an IV line way before she knew how to dress herself. We are second thinking our living quarters and how to make it accomodate Myah. We currently use our bathtub to run her iv and use our cord to our blinds to hold her IV bag. But this is not going to be ideal as she gets older. The 4 kids share a bathroom but with Myah being a girl and having to use the bathroom as her treatment room is really hard.

We need to start thinking outside the box..but having a 2 story home is not ideal for a child that cant make the steps when she gets out of the hospital...My parents would like us to sell and look for a ranch but the market stinks right now...Hoping to come up with a solution soon

Here we go again...

2011-04-19T10:35:00.000-07:00

More testing for Myah. We have done them a gazillion times and each time its harder and harder..We know that from previous ultrasounds that her urine was backing up into her 1 solitary kidney (she only has one), which if not fixed, will cause kidney failure. They also discovered during her pressure test that she has what they refer to as an “angry” bladder. Apparently her bladder won’t let itself fill calmly like it should. As soon as the littlest bit of saline was pushed into it, it started to contract. But due to the nerve damage, her urinary sphincter stays closed which resulted in the saline getting pushed back up into the kidneys. So that is apparently what happens when her bladder trys to fill with urine as well. Urine in the kidney is NOT good.

The urodynamic testing covers Post Void Residual, Cystometrogram, Electromyogram, Leak point pressure and Uroflow and then the VCUG, well that another horror story...this is all done while she is awake and papoosed down to the table while they thread catherers into her. And she not being able to talk kills me cause he facial expression speaks volumes..

Please Lord get us through this , she has had just about enough...! And to think we have to re-do all these tests again this summer at the NY hospitals...Grrrr..

My invisable illness

2011-04-12T05:57:00.000-07:00

“Can I bring you dinner?”
“No, thanks.”

“Can I drive with you to the doctor’s appointment?”
“No, I can manage.”

“Can I come visit you to cheer you up?”
“No, not today.”

I am quite reluctant to accept help – even when in desperately need it

“Why Is It Hard To Be Helped?”

I guess because
- I'm more comfortable as a helper, but not the one being helped.
- Afraid that others will pity us or see us as weak.
- Afraid that we’ll be a burden.
- I think we should be stronger.

I know why I am the way I am... I brought up by stoic parents who never received and always gave, you see yourself automatically in the giver position. When chronic illness/ disability takes away that role, it can be very devastating.

I have learned that people WANT to help me, not out of obligation, not because we are in dire need,but because they love me. So I am learning to say "yes", I accept the help with a humble yet heavy heart.

Had a long talk with my Pastors wife and she said "Rina you have flown under the radar long enough"..I guess but so many other people need help, more help.....I guess why our family volunteers as much as we do ...I know the feeling of the unknown, and if I can remove that fear from one persons life then it makes mine so much better...

you know what they say..you live and you learn...and at the age of 40 , I am still learning...

Blessing - iPad2 Donated to Myah

2011-03-30T18:37:00.001-07:00

We received a blessing...
A local family saw something they did not like, took action and changed it.
Myah's iPad2 and all her apps have been purchased for her.
Thank you, Thank you..we are on bended knees tonight.

It's hard to find parents to adopt special needs children. Adopting a child with special needs is a life-changing experience, filled with daily challenges, frustrating obstacles and joyous surprises. Today I can say its joyous...oh happy day...

We spent a lot of money to bring Myah into our lives, but it's a drop in the bucket compared to Myah's worth in our lives.

I couldn't imagine my life without her. Myah has obvious communication problems, but she's smart as a whip and a recent MRI shows no neurological abnormalities. Her first word was mama, which tickled me so, but it took her a while to be physically able to say "mommy."

Despite the communication issues, you can see her compassion, joy for life, loving nature and sweetness, she has a lot to say and offer the world and manages to do so with just her smile. But thanks to this family we can start to change that.

Many people have asked me, "Do you know what you're getting into?" And I simply tell them that I signed up to be Myah's mother, with all that comes with it, just like any parent.

I am not going to lie, there are many challenges to adopting a child with special needs and it's crucial to be prepared, organized and supported by others. Insurance issues alone can be a full-time job, let alone learning to navigate the local educational system, where to apply for assistance and endless medical needs.

For instance, we regularly deal with neurologist, geneticist, nephrologist, colorectal surgeon, dietitian, speech & language pathologist, occupational therapist, and physical therapist. She has had 14 surgeries in the 2 years we've had her.

I've had to learn to be an advocate for her. The central point of her life is me and that can be very scary. But at the end of the day I come to realize that people do care, people feel and people can make a change. It takes a village to raise a child and I am blessed to have this family live in our village. We love you for paying it forward and believing in Myah and her potential...Blessed be......

ipad

2011-03-23T08:14:00.001-07:00

Ok, so Myah is entering Kindergarten come August. And as we all know she is non-verbal. She is able to say a few words but nothing that constitutes conversation. I've learned that some schools (not our district of course) are allowing students to use Ipads as speaking devices.

The touch screen system that the iPad uses works well with children who have difficulty communicating verbally and are able to use their hands and fingers to manipulate and interact with the iPad screen. There are some apps that have been designed for students who are non-verbal to use in order to indicate what they know, what they want, or what they need.These apps are expensive $400and up... I reached out to everyone and anyone who will listen and was told that there is no money in the budget for this.

So I wrote to Apple, I wrote to every store (Best Buys, Target, Walmart ect) that carry Ipads to see if they have any grants or donate such items to children in need...Haven't heard back from a soul..

Who should pay for augmentative communication devices? Some people are interested in donating iPads. Some believe insurance companies should foot the bill -- something they have been reluctant to do. Part of the reasoning is that are some people who would try to game the system. People aren't apt to fake the need for a wheelchair. An iPad, on the other hand, they might. But how do we put iPads in the hands of those who need the technology to live more normal live?

Does anyone know of grants or companies who help with such a request?
I am totally stumped...I am doing everything to help her get out of the silent world she lives in...

Please advise..

Full Circle

2011-03-21T16:15:00.000-07:00

As most of you know Myah is a Make-A-Wish- Foundation recipient. We were sent to Give Kids The World Village in Orlando , Florida for a week. Not sure if any of you are familiar with the village but please take the time do learn about it. ( http://www.gktw.org/).

Give Kids The World is a non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids The World Village.

I was on their website and saw that on March 21,2011 Perkins Restaurant was serving free pancakes if you made a donation to Give Kids The World. I spoke to the kids and asked if it was something they wanted to do...and before I can finish my sentence they ran upstairs to grab their piggy banks..

I explained to them that if they donated their money then they would have to start from scratch on saving for the things they wanted..but they were set on paying it forward...Payingit forward to the ones who initially gave to us...Funny how things came full circle hey?

So they walked in the restaurant and immediately the manager came out and asked if he could help. My boys explained how Give Kids The World gave to us and they wanted to give back...so they began emptying their piggy banks..

they started filling up the donation box...coin by coin...

as I read the side of their piggy banks it dawned on me that I have amazing kids...Mitchells piggy bank read "$ for Myah college". He knew that we had made a very hard decision a few months back..we had to cash in her college fund..it was very hard for us as parents ..taking away her future to pay for the present...still losing sleep over that decision. I feel sometimes as if I am agreeing with the doctors on her destiny..the fact that one day she might not make it there..but it gave me hope and a goal knowing that her college fund was there..something to look forward to..and that is now gone..now I can only look forward to the next renal panel, urodynamic testing and surgery...

There wasnt a dry eye in that restaurant..the manager didnt know how to compensate us..we didnt want anything..just to gie back..but he insisted that the kids take a Give Kids The World bear as a good deed token...

I pray everyday that she out grows this shirt...that her health takes her far beyond the size of the shirt...that's my wish !

so in the end we walked out with a wonderful bear, full belly's, empty piggy banks and a warm heart...and the saving will start from scratch again...because anything is possible if you just BELIEVE !

Taxes....UGGHHH

2011-03-21T07:30:00.000-07:00

Ugggh...$46,000 in medical bills....
Just when you think you can make ends meet they keep moving the ends...

Happy 5th Birthday to my Daughter !

2011-03-13T14:58:00.000-07:00

My daughter will turn a year older once again and here I am once again... getting sentimental. If my daughter will read this – which she will one of these days, she’ll probably laugh at me.

This is me talking to my daughter...

I can’t help it every time I see you; you seem to be in a hurry to grow up. Raising a child is probably one of the most challenging times in a mother’s heart. Being a mom to a daughter , makes me face “girlhood” once again, as I relive my own experiences as a girl.

The years of being restless and how I managed to carefully prevailed through the tough times despite my feeble and fragile youth. Now with you growing up in front of my very eyes, I want to shelter you from the pain and the hardship which I know will be next to impossible. For I know that whatever I tell you to do, you will soon go your own way, to take up your own destiny.

Nevertheless, I am confident that whatever challenges life will give you, you will come out of it triumphantly for we (daddy and I) have raised you to be resilient. Your experiences will mould you and that will be the fingerprint of your life. I may not be there every single moment of your life but rest assured that I will never stop praying for you.

We may lack the material wealth but you are not deprived of love and support --- and I know that in your heart you are aware of its importance. I can never imagine my life without you (and your brothers). You you inspired me to be a better person. It was when I had you that I realized I needed to have direction in my life – you gave that to me and I thank you for that.

I'm so grateful that God gave you as a daughter. No matter how many birthdays come and go, you'll always be my little girl. Happy Birthday, my princess, my dumpling and little wonton..!

WE WON !

2011-03-04T09:11:00.000-08:00

Well , we did it...

Myah will officially start kindergarten in August when she is 5. We fought hard for her to be mainstreamed and not to be in a special education class. She will receive her accomodations in her mainstreamed class and participate to the best of her ability.

NOBODY is going to tell me what my daughters potential is and what environment it needs to be given. She has proven us wrong on so many issues...She will prove us wrong again..you watch...

Myah breaks down her ABC's

2011-02-04T14:07:00.000-08:00

Please turn volume off on my music in the right column.

Well I have been doing some volunteer work in thePublic school district for a program called Junior Achievements. I basically go in the classroom and talk about the community, the difference between NEED and WANT, money, finances, education ect...I love it and so do the kids...I've doing it for a few months now and my boys are in the classes....

But since Myah goes to a Special Needs school which is in another town and another facilty I have been pulling her out to join me...It was then that it dawned on me that Myah deserves to be main streamed. Her school disagrees because she technically has a medical issue and needs support services (OT,speech ect)and not all of the schools can accomodate her to the level that she needs. Plus there "WAS" the diaper issue...but she is in panties now.

So I decided to go up against the Board of Ed and fight for my daughter..I am sick of her being an "exclusion"...Lets make her an "inclusion". I want her to go to school with her siblings, I want her to participate in gym and school events...

We are already a multi-racial family, her adoption is known by all...I dont need her feeling anymore different...

Fighting for my daughter....whether its medical or educational..momma got your back !

Back from Hiatus !

2011-02-01T18:03:00.000-08:00

Thank you all so much for touching base to make sure all was ok with our precious wonton. I just needed to take a little break from blogging and concentrate on the family a bit ..especially after Myah's surgery. She is doing GREAT !. Her incision has healed up and she is a happy 4 year old..soon to be 5 in March.

She has really turned a corner. She can recite her ABC's and able to write 3 letters of her name. She has been communicating so much and really putting an effort in trying to talk. She is able to put 3 words together and says them clearly..but then there are times that she completely butchers the word..for example her brothers name is Mitchell and she tries to say Mitch but calls him BITCH.. ummm yeah tell me about it....

She is still very soft spoken and wont initiate conversation with others but she does grace them with her almond shaped eyes and her gorgeous smile.

Hank and I have managed to remain strong and provide the best we know how. We have been taking some time away from the kids (they stay at moms overnight) so that we can recharge and be able to face the next obstacle that comes our way..and there will be many...the question is when ...so we wait for the other shoe to drop but live each day to its fullest...

The bond that these 4 kids have is like no other...they have managed to weave their inner souls and love each other. I can sleep tight at night knowing that if I lived my last day here on earth my kids can carry on knowing that we are family and through thick and thin they have each other...Its a great feeling to have ..something that is not taught but instilled in them...I am so proud of my kids and their relationship with each other. I am especially proud of my oldest son Devon who is mommy's helper..He has grown up before his time, he has picked up the slack when I am not around.

Our holiday was great..we spent it with limited gifts but an abundance of love and thankfulness for having each other. We managed to get away to Paradise Island, Bahamas with my parents and my sister and really spent some family time away from hospitals, doctors and pressure.

This years resolution is rather simple....I vowed to accept help and not try to mico-manage everything especially when I cant handle things on my own...giving up some control and allow people to help is very hard from a control freak like me...I also vowed to not be so hard on myself if I drop the ball...I am doing the best I can for my family and they know that...

So bring on the New Year with no expectations other than building a stronger and healthier family unit...

Thanks for all the emails ...I am back my fellow bloggers !

All I want for Christmas is HEALTH for my daughter !

2010-12-21T05:43:00.000-08:00

We get excited about the lights, shopping and Christmas dinner with family, but we also fear the stress that past holidays have taught us to expect. From previous family misunderstandings and hurt feelings to scheduling conflicts, tight finances and the wear and tear on the body, holidays have a way of taking their toll on us.

People always say that challenges make us stronger; each week I learn more and more what it is like to live in the world my daughter lives in. I do not always rise in response to the many challenges I face in parenting her or her handsome brothers, but each day she greets me with a hug and a smile, and she never looks at me with even a sniff of believing me the failure as a parent that I often think I am. There is nothing I could ever be more thankful for as a parent than to have a daughter who, amidst her challenges and struggles, makes me believe I will rise up, just like her, above it all.

Beginning to look a lot like Christmas!

2010-12-18T17:02:00.000-08:00

My tree turned into an arts and craft tree..and I love it....

ME: Did you knock Santa's head off his shoulder?

Trevor: No, it was Devon..he's the one that doesnt believe in Santa

Yummy

2010-12-18T16:59:00.000-08:00

Myah loves to eat and missing a meal is unthinkable. She's happy and HOME !

Blessings = Family and Friends

2010-12-18T16:30:00.000-08:00

My family did a great job taking care of the kids and taking them to and from school. You dont know what a rleief that is when that is taken off your plate. Mom and Dad are such a great support for me..I never have to ask them they just know where they are needed...

Our fiest day home friends showed up at our house and unpacked our Christmas decorations and put up my Christmas tree. I was in such a panic not knowing if I could get around to it since I had so much catch up time to do with my boys and Myah being on IV.

In my livingroom catching up with small talk...I am so fortunate to have them in my life

Amy was ready to pitch in

the girls help decorate the tree

Myah and Mitchell

Myah-girl

2010-12-14T06:07:00.000-08:00

Moved Mountains..

2010-12-12T15:29:00.000-08:00

ok...what a roller coaster ride...and for those of you who know me I HATE ROLLER COASTERS...

We were told that Myah would have to remain in the hospital until Christmas..not sure if you heard my truck driver mouth from where you live but it wasnt pretty...(I did return the next day and apologize to the doctor for everything I said about his mother).but I was mad...I am an hour away from home, havent seen my boys, missing school events, kids have been jumping from house to house and I havent slept in my bed in weeks..but on the reality side..my daughter needs me here...TORN !

So I had to think outside the box..how do I get her the care needed (Iv treatment ect)...I thought of transferring to a hospital closer..but got turned down by insurance...ok Rina think ...think...I then asked for a at home nurse..and they said no...

No isnt something I am used to hearing..I am a go getter and if things make sense for all involved then why not...so I put in a formal appeal and was going to fight it..7 doctors and my insurance comapny on the phone...I was shaking in my boots..ok to tell you the truth I threw up in my mouth...but I walked in and pleaded our case..

Fast forward...they approved us on conditions that I would stay for her 3am iv treatment ..leave the hospital at 4am..arrive home..and have infusion center drop off meds at 8am...the home nurse arrives at 9 for her next iv treatment...

I never packed so fast in my life..I was packing and hoping nobody would walk through the door and change their mind..so I kept a low profile that evening...

Things went as planned..arrived home, got smothered by kisses from the boys and nurse and infusion center kept their end of the bargain too..but then after having the nurse here looking at me in my face all day I was like "this is stupid"..dont you have Christmas shopping to do or something...I showed her thatI can infuse her and do the heparin iv flushes and prime her line..after some convincing the nurse pulled out of the driveway with hopes of catching some rollback sales at Walmart..

So its me and my girl..and I am caring for her in the comfort of our home..until we prepare for the next surgery...

As for Myah..well let it be known ..she is still standing from the storm....

Surviving...

2010-12-10T10:58:00.000-08:00

Well they removed her stomch drains.and that was not too bad..a few tears and it was over..silly me..I should of known better...they told me that they had to fish a foley through her incision site..the exact location that the drain came out of..WHAT? I thought I was hearing things..I swear I almost knocked that stupid "huh" look off the doctors face...

His logic was that he had to inject fluid and contrast into it and then take a CT scan...not sure if you heard her screaming..or my truck driver mouth (I really have to work on that) ..but I am proud to say...Myah is still standing in the storm..so proud of her...

We're ok...

2010-12-10T08:42:00.000-08:00

Ok Myah had 3 hrs emergency surgery on sunday. the tumor seemed to work itself through her stomach. She is a trooper sitting up in her bed, 2 drains in her stomach and a morphine drip..more surgery to follow...

Crushed

2010-12-08T08:03:00.000-08:00

Reports came back on Myah..looks like we WON'T be out before Christmas. I am so upset about this...Upset that I have not prepared for Christmas..there's not a tree up or a strand of lights or presents..Again my boys pay the price for mommy being gone..I am so torn..

My Family

2010-12-06T16:50:00.000-08:00

I look at this picture ..just taken a few weeks ago from my friend Laura.. things were at a slower pace..not a worry in sight...amazing how we got a jolt that quickly set us into a tizzy and created chaos . My boys are shuffled around, my husband not being able to work so we can take shifts, the dog left alone at home and Myah at the grace of the hands of her doctors..and our journey is just beginning.

My son asked me tonight over the phone if we were celebrating Christmas..I answered "of course"...he replied "then why havent you decorated or put up the tree"...
It dawned on me that I need to try to find a way to get that done..so my kids (at home) do not miss out on this years holiday..that I keep some sort of normalcy for them...

My son called me later and said.."mom I lost a tooth"...Jeez I missed it..I am missing everything..so focused on my need here with Myah and totally neglecting the boys. I know they understand but that excuse only goes so far..I feel so torn..missing class parties, class centre and they missed their after school Hip Hop classes...Life for them just STOPPED...but how can I be in 2 different places...40 minutes away from home..

I miss my family, I miss telling them to go to bed a gazillion times at night, I miss finding cookie crumbs on the table and filling juice cups a trillion times...
Hoping I can save this holiday for the sake of my kids...

R-

Update

2010-12-03T10:35:00.000-08:00

Myah has been hospitalized due to the vascular tumor and its size.Its very close to her spleen. Trying to treat the infection before any surgery can be done...plus it doesnt help that I am at "Saint Mary's" Childrens Hospital and every doctor and their mother is off for Hanukkah.

PLEASE Vote!

2010-11-30T17:07:00.000-08:00

We need votes...yes votes...if there is any such thing as a silver lining then this must be it..so please help ...

About a month ago I submitted a silly story/paragraph about pottying/toileting to a contest...well out of 41,000 entries I was selected as 1 of the 6 finalists..the one with the most votes wins a trip to NYC...well folks we were just crunching numbers to see how we can get to NYC to see her surgeon because we got a bit of bad news yesterday...Myah has another tumor...(picture above)

I spoke to the contests marketing manager and she said that we would be able to stay as long as we like but they will only pay for 4 days in a hotel..but we have family there and we can stay longer to get done what she needs to get done....

PLEASE PLEASE ...VOTE ! Only those in the USA can vote otherwise I will be disqualified...

...Leaving this in the hands of my bloggers...please post to your blogs and help us get to NYC..wish I can say it was for fun...but turning over every stone for my wonton...

http://family.go.com/toilet-tale-contest/finalists-toilet/wait--wait--not-there--41962/

Shpiruk Food Drive

2010-11-20T05:47:00.000-08:00

Halloween 2010

2010-11-20T05:26:00.001-08:00

Halloween was fun this year. We didnt know what to exactly dress her up as since she NOW has an opinion about clothing. She is not to picky but when she doesnt like something hse has no problem shaking her head no. So we went to the store and I showed her all the costumes and low and behold we walked out with nothing...Nothing I say..So we had to think outside the box. She loves watching her brothers in their Hip Hop dance class. And all the while we are there she is looking at all the girls who are dressed up for productions and ballet. I see the twinkle in her eyes but because of she doesnt understanding left from right the teachers choreography is thrown off..So no dance for Myah...

But we decided that she can dress up as a dancer..So we showed her a few outfits and she knew right away which was hers...

My boys dressed up as a football player, Ninja and a b-boy...

Fun was had by all and we came home with 4 pillowcases full of candy...Mommy sorted the bags and hid all the Reeces Peanut butter Cups...ALL MINE..Life is good when you have a Reeces in your hand

See you on the other side...

2010-10-28T15:08:00.000-07:00

October 27, 2010

Chilling to hear the phone ring at 4am and know that its 'the call'....

My grandmother passed away...She was 99 years young, we expected it..we knew..we were prepared...but were we really? No...

Hit me like a ton of bricks..What do I tell the kids? How to I face my mother? Which poker face do I put on when I walk through their door...God called my bluff...I had no poker face, I was like a deer caught in headlights...Unprepared ...I AM NEVER UNPREPARED...it was unknown territory for me...not an eyeliner or tube of mascara could mask my face from the tears and hurt.

My mother and I decided we wanted to prepare the body..do her hair and dress her for the services..Again unprepared from the vision of her on a metal gurney, the incision on her neck from enbalming and the stiffness of her body..but the 2 of us went in and stood there like 2 blubbering children...both still wanting to prepare her the way we knew she would want ot be prepared. She was very picky about how her hair...

Tomorrow is the services and Saturday is the funeral...so many details left to be done..family flying in from all points and I seem to be chasing my tail..

Goodbye Nonna...see you on the other side...save a pair of pretty angel wings for me...

Mi manchi..tanti baci cara ....

Cover Model !

2010-10-25T07:07:00.000-07:00

She made the cover of November 2010 Parenting Magazine...

This picture means more than any of you will ever know. I have been fighting the demons in my head...the demons being the finding ad of Myah when she was a baby. The last time she was in print it was in a Chinese newspaper where they were looking for next of kin/birth parents and she was labeled #MA268...

My daughter is NOT a number and its not the way she will make the paper...So I am back tracking..erasing that horrible picture that made it to print..

This is much better folks...

This is My daughter....Myah Mei Shpiruk

and I am her MOTHER !

The END !

Pick up your copy at newstands TODAY !

Reunion with Lily- Myah's China sister

2010-10-17T04:58:00.000-07:00

Yes its true..dreams do come true..what a magical day

My boys participate in sports on Saturday but they refused to go so that they could support Myah on this very special day...Excitement was high..Mitchell said "Myah she can't have you"..I think thye were worried about losing their sister...

My kids ...

Look at Lily's face when she saw Myah..priceless !

Group shot !

Sisterly love !

My boys emraced the girls and walked hand in hand...melted my heart..

my heart cant stand it !

Myah doesnt speak but Lily made up for it..

Muah!

The 3 princesses..

What a happy day...connecting her past, to the present....and looking forward to the future !

This is how the Shpiruk's roll...I think I need to pimp their ride..perhaps some hydrolic wheels

Jan and I

Time to say goodbye!

Devon was sure to tell Lily that he will take care of Myah..and not to worry..

Until we meet again..I love you

Bye!

At the hotel....prank calling peoples rooms telling them they have a visitor at the front desk...LOL..it was funny, I guess you had to be there...

Some breakfast in the Am..and then its home sweet home...

Momma did good !

2010-10-17T04:44:00.000-07:00

Ok this is the opening that was left on Myah after surgery. I was told that they simply couldnt close it and it would heal but she would be left with a divit in her side. Well I was besides myself. I mean I know its cosmetic but I couldnt wrap my mind around that. So I put a butterfly stitch on and prayed that I was doing the right thing. Went to the pediatrician and she never asked who did it but just checked to see if there was infection. All looked good...yay for mommy...

I canceled 2 appointments with the surgeon because I was so scared of facing him. Especially when he told me not to touch it. Finally the day came and I had to face him. He lifted Myah's shirt up...turned to me and said " Would you like to be my assistant?"...and thats all that was said...silence fell upon us in the room...

This picture below is the picture of her healed scar...not the prettiest of things but then again...the more a diamond is cut the more it shines !

Letting Go !

2010-10-09T15:40:00.000-07:00

This week has been really tough on us as a family. My grandmother has lived with us since I was 17 yrs old. She has raised 6 children of her own and had the hardest life I could ever imagine. She was a farmer.

There has been many times when she wanted to give up on living. But when we started the adoption process we told her she couldn't die until we adopted a child..That day came and went...Then We told her that she had to stick around to see Myah come out of her 1st surgery..that day came and went....fast forward, we told her the same story for the next 12 surgeries..and she held on....

She is a fiesty woman who is 99 years old. She will be 100 years old in March...so I told her that she needs to hold on until March and make the 100 year mark...she turned to me and said.." if is was for someone else she would try but she simply didnt have it in her to hold on for herself"....

So needless to say she has taken a turn for the worst and is on morphine for her pain and we simply wait for her to be called by God. We have called the family in Italy and everyone is flying on on Oct. 20th and staying for a few months and sit by her side..

Until then we prepare the children and make collages and write a eulogy. I have never done this for anyone never mind the fact that she is still alive. She has held on long enough and we all nervously jump with every breath we hear...

My kids

2010-10-08T13:30:00.000-07:00

Wonton for the Wonton !

2010-09-29T14:44:00.000-07:00

when my boys are sick/ill i make them homemade chicken soup..but when Myah is sick/ill my boys make her homamade wonton soup...love the tradition
.

In a nutshell !

2010-09-28T04:53:00.000-07:00

The more a diamond is cut the more it sparkles!

Bravery @ it's finest !

2010-09-24T18:22:00.000-07:00

6 am and ready to face the day..

all smiles

hanging around and waiting

They called her name...it's show time..I am about to have a friggen meltdown..

walking her into the OR

you got this girl..shoulders back, chin up..you've been through worse..don't give in to defeat..YOU GOT THIS BABY...!

she got her composure back

but in the end she was taken from my arms and walked down the hallway to face fear straight in the face.

I will never forget the sickened feeling in my stomach..took me to my knees..

YOU GOT THIS GIRL...I screamed as she turned the corner...and the doors closed

in recovery

drains are in and the doctor simple and bluntly said "I tried my best to get it all out" I said "you tried?" and he said "yes, I tried"....

Hank and I remained in the room in silence..not knowing what to say..if anything..and the silence spoke volumes....

Lord, when does it end? When?

Out of surgery !

2010-09-24T08:55:00.001-07:00

My wonton is out of surgery..she's doing well & the rest is all up to GOD...the doctor said he tried to get it all..let's hope he did ! Thank you family & friends..we feel the love...

Scheduled !

2010-09-23T10:56:00.000-07:00

Met with the surgeon this morning and he scheduled her for surgery for tomorrow morning at 6am...ok prayer warriors..get to work...cause the way I feel right now I dont have any kind words for the MAN upstairs....

Hello scalpel, we meet again

2010-09-22T06:04:00.000-07:00

Another growth growing under her scar..size of a walnut..and causing her pain...
MORE SURGERY !
Hey God, yeah you up there...can you cut the kid a break already?
.

NY GIANTS FANS

2010-09-20T16:55:00.000-07:00

Life is a game..Football is SERIOUS !

Pirate Festival-

2010-09-20T16:35:00.000-07:00

Ahoy Me Hearties!

Aaarrrggghhh

Dead Men Tell No Tales

Aye Aye

1st Day of School....

2010-08-24T16:14:00.000-07:00

New school, new clothes, new shoes...kids are STOKED to start school...

My oldest son Devon..(aka Goose)
9 years old..entering 4th grade

My middle guy Trevor ...(aka Baby Blue)
7 years old..entering 2nd grade

My youngest son Mitchell....(aka Squishy Mitchy)
6 years old...entering 1st grade

Our daughter Myah.....(aka wonton or dumpling)
4 years old...pre-k

11 th year Anniversary...

2010-08-24T16:04:00.000-07:00

Well we made it to 11 years of marriage. Its funny we are not the same people we fell in love with 11 years ago. We have evolved into 2 completely different people. There have been many changes in our plans and goals but the end result is we are a family of 6 and an adorable canine named Stogie...Life is not bad folks...

Our clan out to dinner at the Crab House in Jupiter Florida...

Us

Cheers big ears !

Our dumpling...

Rina and Hank...We still got it going on....

On Gotcha Day- we ate and were merry

2010-08-15T05:45:00.000-07:00

Happy 2nd Gotcha Day

2010-08-11T04:52:00.000-07:00

Two years ago today we were in Guangdong China and we became an instant family...
Funny how I don't really remember life without her...

This picture was taken in our front yard...

And this is Stogie....a Toy Yorkie that runs about $1,500-$2,000 dollars.
We want to thank Marge for GIFTING this dog to Myah.
Its amazing how miracles keep falling upon us.
She has also provided us with 1 year of paid vet bills (puppy shots ect)...

Myah will be taking Stogie to school with her and her speech therapy will be Pet Therapy since she only speaks when around the dog.
We want to thank Paul and Catrina Purcell for payig for her program fee. That gift goes far beyond the monetary donation...Thanks for donating online!

Playing in the rain...

Stogie loves his pop up crate...

Dude listen you start chewing one of my shoes and YOU"RE OUTTA HERE...just saying

Vet check up...h weighs 1.5 lbs and will be 4 lbs full grown....

She loves her dog...

MUAH..Friends for Life..

Diagnosis Discovered

2010-08-10T14:21:00.000-07:00

So we havent made any progress with her speech until NOW !. We started Pet Therapy with Myah and she really made a connection with this Toy Yorkie. But nothing that made us raise an eyebrow to...We were just going through the motions as directed by our doctors. But soon we realized something earth shattering...When left alone with the dog she was able to have a full conversation, complete sentences...but when an adult entered the room she said a word here or a word there...

Diagnosis= Selctive Mutism. Her tongue becomes paralyzed when humans were around...

This didnt make much sense to me..I mean I heard her speak but only when spoken to. But the doctor gave me an understanding of how hard it was for her to speak by asking me to try to wiggle my ears....I mean I cant but if I try I can possibly move a few muscles for it to go up or possibly down but nothing that is remotely close to movement...Well thats kind of what Myah experiences when she is spoken to...A fear, an anxiety so intense that she completely is unable to talk..

But when left alone with an animal , in this case a yorkie , she was speaking freely...

Its a medical mystery if she will ever overcome this...Statistics does not show anything concrete on it..for every success story there are 4 stories behind that that isnt....

Making progress....baby steps..and I owe it all to a little canine friend...

LIVE !

2010-08-08T16:59:00.000-07:00

Went to church this morning and our Pastor came up to us and asked how Myah was doing...we told him that she was doing good but we left Miami Childrens Hospital discouraged and rejected.

I told him that one of the doctors point blank said to me " Mom, its not IF its going to happen its WHEN"...and he sent us on our way to wait until she is no longer in the kidney safe zone...How am I to feel about a statement like that? And it was said so matter of factly.....

And his reply to me was...."so in essence you were told go on and LIVE...Live and dont think about it until you need to..God will let you know when to worry...its not now"....and our Pastor walked away....

It clicked..a weight came off my shoulders and life had a new meaning....

We're living..not worrying about tomorrow, not cryin for whats to come..but living for today...
After realizing the worth of those words, how much do you put in the offering bucket?

R-

After 2 blown out veins..well...FU (God please cover your ears)

2010-07-23T15:41:00.000-07:00

I live my life hiding behind humor and a smile..and behind it all is pain...

they say "Count the garden by the flowers, never by the leaves that fall. Count your life with smiles and not the tears that roll'.....well all I can say is I want to hurt the person who created this quote.... seriously...Tearless pain bleeds inward..

R-

Dead End !

2010-07-23T07:45:00.000-07:00

After a terrible 2 days of needles, testing and putting my daughter under anesthesia several times....3 of the 4 surgeons decided it would be best we continue treatment and follow-ups at Cincinatti Children's Hospital. They do not have the expertise or state of the art equipment here in Florida...I call BULLSHIT ! (and had no problem telling them) I signed ourselves out of the hospital last night and drove home...discouraged !

Moving right along

2010-07-21T19:23:00.000-07:00

on our way to our room

private room with a view

testing, testing, testing

her new wheels

more testing

it was a good fight but anesthesia won !

Off again...

2010-07-16T12:44:00.000-07:00

This is the outside of Miami Childrens Hospital in Florida..it looks like a happy place..especially with the balloons ...

Myah and I will be driving there (2 hrs away) on Wednesday July 21st...They have created a medical plan for us and we will be consulting and having several procedures done. We hope to be out in a week...Fingers crossed...

Nickelodeon Hotel Get-AWAY..

2010-07-06T07:10:00.000-07:00

This is Florida's Red Couch Photo

Gotta love it

Kids got slimed !

Well folks this is the Nickelodeon Hotel in Orlando..The kids had a friggen blast..as for me..ok, it was nothing more than a run down Holiday Inn, with a great pool and slide. Their rooms were not to my liking at all..I mean come on who does polyester bed-spreads that have 1000 snags in it and low thread count sheets. I swear if you held the sheets up to your face you can see right through it..I was miserable....did I mention I was miserable?

me and the kids

Rollercoaster ride

Hey Dora, he's married !

Me and the Mister

and yes they did get slimed...

Myah loves Dora..LOVES HER ! as for me, I just have one question, how does she put her shirt on with that big head..?

the love of my life

Pretty girl with flower in her hair..

Laser tag..

Our family...Myah's crying cause she didnt want to go in the dark room to play laser tag..but came over her fear after Momma forced her...she then didnt want to come out..go figure...

Been busy and on the gooooooo...

2010-06-30T09:03:00.000-07:00

My little wonton

Myah's protectors

Myah and Devon

Me, Myah and Devon

Daddy and Myah

So sorry I havent posted in a few weeks but with the kids out of school well this momma had a rude awakening of motherhood....listening to 4 kids asking for things simutaneously all day long, in stereo in a house with cathedral ceilings...well CALGON TAKE ME AWAY....but all kidding aside..I am loving it...just beat.

And to add a twist to things Myah was to start renal clinic here in West Palm Beach but after much talk with her doctors they decided that they are going to admit her on July 21st to Miami Childrens Hospital (about 2 hours away from us). They plan on keeping her there for about a week..but if they can get us out of there sooner they will. She will be under the care of Nephrologists, Neurologists, GI, Urologists and a Geneticist....Too many issues going on with her and I think all of her physicians want to get her in and address everything at once..

With summer being here, I am leaving the boys yet again and Hank will work from home and manage the household the best he can without having to take off from work. My mom had a scheduled trip to Europe planned and I refused to have her stay behind to help me..

so here we go again folks....let's hope for some answers....cause I have been known to run with scapels...Watch out doctors !

The BIG 4-0

2010-06-15T18:07:00.000-07:00

I figured a milestone of this magnitude pretty much demanded a blog post. Yes, today is the last official day that I can say I am in my 30's. Tomorrow is the big day...the big 4-0. (Insert your over-the-hill jokes here. I can take it.)

There are many thoughts rolling around in the cobwebs of my brain on this occasion. I've heard all the phrases people tell themselves and others to feel better about such an event. "It's only a number." "You're only as old as you feel." You've heard them all, too, I'm sure. So I figure I have two options. I can scoff at those people trying to cheer me up or I can embrace those ideas and take them to heart. I've chosen the latter option. I actually had a much harder time with turning 39. I think the pressure of knowing that in just one more year my thirties would be over was a bit overwhelming. I dreaded the next birthday for months. I suddenly felt the pressure to buy special face creams and every time I walked into a room and couldn't remember what I went in there for, I thought "Oh no, this is it. I'm losing my memory." I truly felt like my next birthday was a black cloud looming overhead and I wanted to duck for cover.And then it hit me. This is ridiculous. I have friends and family members who didn’t have their first child until they were forty! Physically, I work out almost every single day and I feel better than I have in years. Most days, despite four children who occasionally seem to conspire to suck the life out of me, I have plenty of energy. I know a lot of the current popular music (with a little help from those four aforementioned children, who most days bring me tremendous joy and insist that I not act like a dorky mom). I’ve reconnected with a lot of old friends recently, many of whom graduated from high school with me and also have this birthday coming up (if they haven’t had it already) and I’m not alone in this new phase of my life. I have a lot of dreams and goals for the future and much to look forward to in the years ahead.

My children are quite independent, with Devon being 9, Trevor 7, Mitchell 6 and Myah 4.

We are able to do so many fun and adventurous things together as a family. Forty really is just a number. That black cloud isn’t going to just suddenly appear over my bed tomorrow morning when I wake up. I also see this birthday as an opportunity to reflect on what has come before. I am proud of what I’ve accomplished in my life over the past forty years. It hasn’t all been smooth sailing and I’m proud of the obstacles I’ve overcome to get to this point. I brought three children into this world that are such a blessing and traveled 1/2 way across the world for my daughter. I believe they will accomplish great things in their own lives. I’ve tried to be a good daughter, mother, wife, sister and friend. I’m far from perfect, but I think I’ve always done the best I could and it feels great to look back and be able to say that.

So yes, forty is just a number. I feel inspired to reach new goals this year in honor of the occasion. I have wonderful family and friends who will help me celebrate. And when I wake up on tomorrow I will have a moment of hesitation but I promise I won’t start to cry. ...

If the last 40 years years are any indication of whats to come...then I can't wait...

R-

On a Happy Note...

2010-06-09T12:00:00.001-07:00

Here are some pictures that our friend Laura took of Myah...I am so in love with her !

Never a dull moment!

2010-06-07T18:48:00.000-07:00

being transported from 1 hospital to another

she's not happy..

daddy sat by her bed during the day

and mommy slept in her bed at night...the nurses were calling me Morris the cat...I wasnt leaving her side..we shared a pillow..I wasnt leaving her....

always ready with a smile

Well....the one time Hank and I go away...the crap hits the fan...As we docked from our cruise getaway my mother told me that Myah wasnt eating, had joint pain and lesions on her ankles...

So we rushed back to town, went to the doctors and she sent us right away to the Emergency room...Fast forward...Myah contracted a virus called HSP. Not a problem if she didnt have kidney issues to begin with.

they admitted her into the hospital but then decided to transport her from 1 hospital to another hospital 40 minutes away...once there they put her in PICU...

They were concerned because her kidney levels were effected and the lesions she had on her ankles were also on her kidney..she had an infection and urine had white blood cells in it.....they kept her in ICU for a few days but released her today...we will follow through with a renal clinic in Monday...

Thanks for all the prayers and support....

Bon Voyage

2010-05-30T05:17:00.000-07:00

Well Myah's drain came out with no problems and her stitches did too....Things went great and we were very content on how fast she recovered...

Not sure how much I want to say but we did have a scare while Myah was on the OR table. But thank goodness she was intubated and in the right setting....

As far as I go....well my plate has been full for awhile...just when I think I can exhale....something arises...Shuffling and managig 4 kids (1 having special needs) is something I am learning to do ...I tend to drop the ball often....and my kids have no problem telling me so ;-)

So this June 16th I am turning 40 years old....yikes !...My husband is taking me on a 5 day cruise to Cozumel on May 31st...NO KIDS....not sure how he pulled this off...and kinda scared to ask....but he did..

My parents are taking on all 4 kids and that is huge....especially with Myah's medical needs. I am not panicking yet..but I will be when I am on that boat and I have no cell service...

I havent had my arms to myself for years... had my kids back to back...had all 3 of my boys in diapers at the same time...and to leave and not have a kid in tow is abnormal...I feel selfish.....selfish for wanting ME time....

But I am going along with the flow....

SO I am changing attitudes and longitudes tomorrow...as we sail away......

ps....please pray for my dear friend and prayer warrior Anne..she isnt in the best of health and needs us to lift her up in prayer...Love ya Anne..glad you're out of the hospital...xoxox

Home Sweet Home

2010-05-18T18:17:00.000-07:00

We are about to land and Myah is so excited she kept kicking her feet

she ran as fast as her Asian legs would run..into the arms of her 3 brothers

I stayed back and allowed them to have their moment

home at last...with my kids

I couldnt stop kissing them

Myah melted right into Hanks arms

as we waited for out luggage Myah was catching up on hugs

we came home and the boys were looking at her scar and wearing their cross neckalces for Myah

Devon sat on the couch for an hour just holding his baby sister....no words were exchanged..they just sat...

As far as Myah is concerned..well we go tomorrow to get the drain out and then in 10 day sher stitches come out...She is sore and very aware of her operation. She walks around with her hand on her belly as if to protect it from someone bumping into her. She is a trooper and the strongest person I know...Never does she cry, whine, or complain..she finds her inner strength and charges ahead.

The day after surgery..she rolled out of bed..dressed herself, put her shoes on and grabbed my brother-in-laws hand....walked him out to the garage..grabbed a tennis racket and wanted to play tennis....we both looked at each other waiting for someone to say something..but there was nothing to say..she wasnt going to have this surgery get the best of her..she played an entire match...came home, rested her head for 5 minutes and ran out to the swings...She was winded and looked real tired..but she was giving it her best...and thats my girl....The strongest and most determined person I know...

Symbolism

2010-05-16T13:41:00.001-07:00

we crossed State lines for Myah and will turn over every stone

I didnt want to leave without doing something symbolic

so I went today to get a tattoo done in Pinyin

on my wrist

when asked why I chose this specific Pinyin character..well I teared up right away

I chose "HEALTH" for my daughter

and she chose a heart...mommy's heart...

Hospital pics

2010-05-14T10:19:00.000-07:00

in my scrubs waiting to go in the OR

someone is being silly

but 2 can play this game

she loved the hat

in the OR..she refused to take off her new sneakers that my sister bought her yesterday

waking up- post-op

we called daddy right away

iv comes out of her foot...we are out of here..

Myah in pre-op

2010-05-14T08:38:00.000-07:00

Myah is out of surgery and doing well..they added an additional 1 1/2 hours to her surgery. While in OR we found out the hard way that she has a drug allergy...but they were prepared ..we had a great experience with the hospital , how she was handled and post-op...she does have a drain in and in a little bit of pain but doing well..I will post pics later...

Thanks prayer warriors...

Grrrr...

2010-05-13T12:00:00.000-07:00

I get a call from the hospital where Myah will be having surgery on Friday...the woman told me that the contract between Blue Cross Blue Shield and Westchester County hospitals have expired and they are currently in negotiations but as of now unable to agree .....which means no contract, no coverage...

What it boils down to is I will be paying out of pocket for the surgery.....I was on the phone for hours trying to understand why this wasnt told to me prior to me coming to NY...after speaking to everyone and their mothers I was able to get an over-ride for Myah because Hank is a federal employee and the federal plans have not been effected yet..so they told us to proceed....

I am telling you right now, I'm not signing anything tomorrow..NOTHING...I am not going to be stuck with a $60,000 bill regardless what I am told over the phone..I am prepared to cast both hands so I cant sign a thing.
,

Back to the drawing board

2010-05-13T03:44:00.001-07:00

Met with Mr. Ny surgeon yesterday. After looking at Myah he decided that the 2 surgeries that were going to performed can not be done...together at least. He was hoping to do them both at the same time but after her culture came back on her tumor, well there is no way he can concentrate on anything other than the growth.

Its not going to be an in and out case...exactly why he didnt want to take the case at this time. The issue is this , Myah will have a drain in her and stitches that come out in 10 days...I am not going to be here for another 10 days..so then who is taking out the drain and removing the stitches.? My doctor at home refuses to do it...but there is no way I can stay here especially with the 3 kids shuffled around and staying at my parents house...not to mention Hank works on the fatalilty team for Osha and of course he gets 2 fatality investigations back to back the day I leave..so he is working 13 hrs days.

As of now we are on for surgery friday at 5:45 am..
,

Landed Safely....Phew !

2010-05-11T09:44:00.000-07:00

Ok, I know I have issues...but is it me or is the following uncomfortable to hear when on a plane..especially forme, Mrs. Anxiety..

"In an unlikely event "....I dont want to hear this as soon as I get on the plane..perhaps brief me while I am in the airport and not sitting in my seat counting the exits on the plane...

The other thing that REALLY urks me is
"the oxygen bag does not need to inflate to be flowing"...ok the damn bag better be busting at the seams and forcing entry into every open orface on my face. Thats like me saying that when at the gas pump, gas does not need to be flowing to fill your tank....Grrrr
.

He called !

2010-05-10T14:08:00.000-07:00

Mr. NY Surgeon called and said that he will leave Myah on the surgery schedule for Friday...He told me that he has never had a parent talk to him in that manner and he hopes it doesnt happen again...then there was dead silence on the phone...so I chimed in and of course this is where I could of, should of apologized...but NOOOOOOO, I had to go and open my mouth and say " well I didnt think you deserved to wear your white coat, but since you called back go ahead and put it back on.."....I know folks, I know...but I couldnt find a word of kindness...I was jump started this morning by an email no less..not even a courtesy call..

Maybe I'll bring Dunkin Donuts to the appointment...but if he starts in with me...I'm taking them back....grrrrr

.

THE NERVE !

2010-05-10T10:45:00.000-07:00

Ok we are scheduled to leave in the morning for Myah's surgery in Ny..I have 100 things left to do , kids to shuffle around, teachers to notify, bills to pay and packing to get done...

I wake up to a nice email from the NY surgeon...he wants to postpone the surgery because "he cant take on a case like this at this time"...are you friggen kidding me....? I have non-refundable tickets, car rental paid for and my life is upside down...and WAIT.....not to mention what my daughter is going through...

I called him up and before he could explain I told him that the power of the white coat doesnt apply to this Italian New York raised momma ! This is unethical and cowardly. What it boils down to is this ,, physicians are scared to take a case where there is so much unknown with their patients. With law suits left and right..they want easy in and out cases....and Myah does not fit that picture.

We left off on not so good terms...in fact, I think I have some apologizing to do to God...but I am left in the same position I was 3 months ago...No Surgeon ! and out over $410 in copays ...but hey, I have a great NY vacation paid for already..

I went to my pediatrician this morning crying and ranting..she called him and he said to culture the tumor and see if there is any infection..so we did and of course with our luck..there's infection...but she has been on antibiotics since Friday...we are at the pleading stage as of now trying to convince him that by next Friday the infection should be cleared up and she should be good to go...

No word as of yet...

Mother's Day !

2010-05-09T16:51:00.000-07:00

At no time am I more mindful of the emotional complexities of adoption than as Mother's Day approaches. Traditionally it is a day full of celebration, love and appreciation. For adoptive families however the reality of a child losing its biological mother can often be over looked.

My daughter was born on March 7,2006 to a mother I or she would never know. Wow. This is so revealing and insightful about the circumstances and truth of an adopted child's birth as well as about the emotions they inevitably struggle to make sense of.

In order for this to make sense though, the difficulty of early experiences must first be acknowledged and embraced. For the adopted child the difficulty of being given up by their biological mother must not be diminished. Under any other circumstances a child's loss of its mother at an early age is a tragedy. Yet with adoption, it is often the case that the joy of the adoptive parents having a child blurs the reality of this early trauma for the child.

This Mother's Day I encourage adoptive families to embrace the love and joy they feel for their child, and at the same time reflect on what it means for their child to have a mother they may never know. Reflect within yourselves and with your child the meaning of this. Acknowledge your child's early loss and the sorrow it may create for them. Let the child you adopted in love know that loving the mother they may never know does not diminish their love for you. Develop openness and acceptance for your child's emotions whatever they may be. Strive to help your child make sense of how their life began and how you came to be a family. Allow them to know their full story, even the difficult parts.

Remember, it is in the knowing and making sense of our story that liberates us from the difficulties of it. Knowing and understanding the truth creates strength and resilience. Celebrate this Mother's Day by acknowledging your child's full history. What a wonderful gift of happiness and well being for a parent to give..

Happy Mother's Day...

I can't watch !

2010-05-09T16:37:00.001-07:00

Ok folks, no matter how much pain or discomfort this gorl is on she insists on Hank throwing her up in the air when he comes home. I can't watch, I wont watch...and not to mention how close the chandelier is to her head....

flying high

'Mo Dada , Mo dada'...that means 'more daddy'....

Hey Myah, let me give you a little news flash..daddy wont be able to do that to you in a few more years...so enjoy it now....

Still shots!

2010-05-04T17:29:00.000-07:00

Well we decided to hire a photographer and take some family portraits. In the midst of planning a date and location she offered to take some still shots of Myah at her studio for free. So I went over to her house and she took a few pictures..I have not seen the results of her session but she did share one picture with me ...cant wait to see the rest...and once I do you know I will share it with you...

We leave for Ny on Monday for Myahs surgery on her tumor. Please lift us in prayer ..I am not worried about this surgery at all. I hate to say it but this is'nothing' ...my daughter can handle this with her eyes closed...we are mentally prepared . I show her the growth and point to it and tell her its coming out..And she runs and grabs the scissors. I know she has the coping skills to get her through this and we will move on...

Looking back on my journaling I read one post from January 2010 and I vowed to have a medical plan in place for her this year and tackle it head on....

Bring it on !

Trails of TEARS !

2010-04-22T12:33:00.000-07:00

To My Sister Emily,

We were so close, hands clasps together, our knuckles snowcap white..
I thought we lost each other forever when space and freedom spread our fingers apart.
Not knowing how to catch again....

Today I feel every mile elongated as they stretch over state lines..
I celebrate you and love you deeply...

Our story was selected for the State of Florida..To some its a good read..but for me its both happiness and sorrow...

hope to see you again sis....oneday...someday....

http://sfla.wish.org/2010/04/12/a-royal-reunion/

Love Myah...
.

The Guilt was killing him

2010-04-21T10:15:00.000-07:00

My 6 year old Mitchell came to me and said "Mommy remember you said that if we did something wrong and we tell you that we won't get in trouble"..I nodded..."Well mom I prayed to God that you didn't leave for Ny and be gone for Mothers Day and God listened...but he hurt Myah by giving her an infection..I didnt mean for that to happen, I just didnt want you to be gone on Mothers Day"..

Ok, I am clutching my heart because with all the fiasco I never realized that it was Mothers Day weekend that I was going to be gone. And that I would of missed his Mothers Day performance at school.

I sat with him and told him that God didnt want me to go either and that He has magic pixie dust (medicine) that will take care of her infection..so its a win win situation. He just looked at me and said "You going to love my show and I will sing extra loud for you to hear me"...and he simply jotted off in a skip...

UTI

2010-04-20T17:25:00.000-07:00

Houston we have a problem...

Myah has a UTI so we had to move the surgery back a bit..Leaving on May 11th..surgery on the 14th..back on the 19th...Lets try this again...

No boundaries !

2010-04-13T14:59:00.000-07:00

Ok, we have only been home a few weeks since leaving Cincinatti Childrens Hospital. And we still have the abdominal tumor to contend with. So after much scouting and research we decided to fly to NY to be seen by a reputable pediatric surgeon. I wasnt sure he would even take on a new patient. But after talking with him he agreed to taking Myah ASAP due to the nature of her situation. As of now we are scheduled to leave on May3rd. We will see him on May 4th..go through pre-op testing and surgery will be on May 7th. I am turning over every stone , no matter the state or country...

Squishy Mitchy

2010-04-09T13:35:00.000-07:00

Went to the park and my son runs up to me with picked flowers in hand

My son Mitchell

Off to the Beach !

2010-04-09T13:16:00.000-07:00

sitting back and watching my kids play on the beach..Priceless!

she is so happy..and free

she knows how to pose ( I wonder where she learned that from)

a birds eye view from my perspective

dude you are so lucky you're not big enough to feed 6..cause it would of been the end for you my little friend

I'm Egg-zosted....Happy Easter!

2010-04-09T11:31:00.000-07:00

Myah girl

Bunny droppings

My kids..

Volunteer Work..

2010-04-03T18:08:00.000-07:00

My kids and their 2 friends decided to help the church with stuffing eggs and putting them in bags for the kids. The field was too wet to have an Easter Egg hunt .

The bags are neatly decorated and stuffed

bins and bins of eggs

a job well done on their 1st day off for Spring Break

My kids...

I Represent the Lolli-POT Guild

2010-03-31T10:54:00.000-07:00

ok, since I was in Cincy I was not able to make Trevors costume for his school play. He was one of the Mayors in the Wizard of Oz. I "simply' asked my mother to do it for me. And she did a great job...until I looked closer..

She glued leaves on his hat..but I had to do a double take...IT WAS POT LEAVES !..OMG, they are going to call CPS on me. I had zero time to re-do the hat. The play was the next day. I asked mom where she got the folliage from and her response was .."Rina I found this really cute store, and when I walked in..well it smelled so good in there...and then I saw this adorable tree..so I bought it"..needless to say..it was a Hippie store where they sell bongs and such...

and note to self..never ask for her to take your picture...she will cut someones head out of the picture ...FOR SURE...

All kidding aside..she did a great job stepping up to the plate...

R-

Its all about Bowling

2010-03-31T10:49:00.000-07:00

ok, I lie, its not all about bowling...its all about winning. And to tell you the truth its never easy playing with all of the kids at the same time..I usually have 1 happy child and 3 crying...All because, they didnt win.

I have some competitive kids ..wonder who they take after?..hmmmm

Trying to find routine...

2010-03-31T10:44:00.000-07:00

We have been back home and trying to find a routine for Myah and her new medical plan. Its not as easy as we thought. We both have cried, we both lost our cool at times but at the end of the day we are coming closer to this new path.

This is as normal as normal can be for us right now. Its all about 'acceptance". I hate that word..I feel as if I am throwing in the towel oppose to fighting to change the outcome..but for now its all we have...

R-