Roadtrip !

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 !

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

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 !

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..

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 !

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

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...

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

“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

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

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

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

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 !

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 !

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

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 !

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 !

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!

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

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

Blessings = Family and Friends

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