Water Walker!

Two weeks ago, we took our annual Finney/MacCallum/Marinello trip to Palm Springs. We all knew this was going to be such a fun vacation for Seth because he LOVES swimming! However, just days before we were to leave, Seth's Water Walker - the device we ordered to allow him to swim without his face in the water - had not arrived. After calling the company from which we originally ordered & finding out they had no order & couldnt rush deliver, we called the manufacturer. She happily shipped the Water Walker 2-day and we had it Friday before we left! Seth loved it! He spent hours just floating around the pool - or being pulled, spun, bounced, and dragged around by any of us adults or our crazy group of kids. Here are some pics of him using the Water Walker - you wont be able to stop smiling when you see how much fun he is having!

Thank you again to everyone for all of your support, donations & prayers!

Help...and Intro

Hey y'all. We thought it was time for a little intro...my name is Lisa, and I do the writing for the Funds For Seth blog. Seth's mom, Melissa, is my best friend and for all intents and purposes, my sister. I've been there since the day Seth was born - the second, to be more accurate - and have watched this family go through all of the peaks & valleys of CMV. Seth is a precious, beautiful gift to me and my family & Im so thankful that I have the opportunity to help him & his family by telling his story and helping to organize and keep track of the every day goings on of Funds For Seth!

That said....

We very much need your help. Recently, Seth has started to be able to bear weight on his hands, ie. a crawling position. This is fantastic as prior to this, he could only hold himself up on his elbows/forearms! However, this has also posed a bit of a threat to his safety when in his bed at night. He now attempts to launch himself forward - and this boy is strong. Two weeks ago he gave himself a black eye when he hit his face on the bed rails. He is also quite tall and only going to get taller, so one day he will most likely launch himself right out of the bed! This is all compounded by the fact that he cannot see, so he has no idea where he is going - he only know this is a fun thing to do and he enjoys the self-propelled flying forward.  So, priorities have changed and the Courtney Bed is now in the top position.

Insurance will not cover the bed. If we are raising the funds on our own, the maker of the bed will do it for $4000 plus $195 shipping & handling. We are so blessed to have the $2000 half-payment required for production of the bed to begin, which was sent to CYR Designs on Monday.  We have an additional $1000 in the bank and about 8 weeks to raise another $1000. So...we are asking for your help. I know so many of you have donated already, whether via The Ortiz Family Foundation or by standing in line & purchasing ice cream at a ColdStone fundraiser. If you have the ability, Im asking that you would consider donating yet again, so that we can get Seth his bed...his parents need the peace of mind as they sleep at night, and Seth needs to be safe & secure - and NO MORE BLACK EYES!

Please consider making a tax -deductible donation through The Ortiz Family Foundation - just click the paypal button in the top left corner of this page. As always and most of all, we covet your continued prayers for sweet Seth!

Thank you.

Another Fundraiser! And Another Update!

Join us PLEASE for another opportunity to help us raise some "Funds For Seth"!!!  Last month's turn out wasnt the greatest - help us make this month's fundraiser a success! On Wednesday, July 13, Visit the following ColdStone Creamery locations between the hours of 11 am and 10 pm and say "I'm here for Seth"! Twenty-five percent of all purchases will be donated to Funds For Seth!

ColdStone - Gilbert
3641 E Baseline Rd Ste Q101
Gilbert, AZ 85234
This is on the SE corner of Val Vista & Baseline! It's tucked away in the lot but keep looking!

ColdStone - Scottsdale
14858 N Frank Lloyd Wright Blvd Ste 165B
Scottsdale, AZ 85260

Thank you for your efforts up to this point! we have been able to purchase Seth's vestibular table (instead of the chair) and an awesome device for the water which will allow him to be in the pool, have fun & be safe! Swimming is one of Seth's favorite things to do but with very little upper body control we spent a lot of time just trying to keep his face out of the water....with the Water Walker, he will be able to truly enjoy his time in the pool as well as work to gain strength, balance & coordination as he plays. It will also very likely be used when he begins his water therapy!

None of this would be possible without your support & prayers - please keep them coming! And we will see you on Wednesday at ColdStone...remember to say "IM HERE FOR SETH"!

A Little Update....

You all have been asking for an update on Seth, and this is late in coming isnt it? Well, here you go! Okay, it's a partial update. This one is medical/health stuff only. We will update again after his fundraiser on Wednesday with the info on his physical well-being/therapies. For now...this is what is going on with Seth!

Seth has been through a lot recently! The biggest news healthwise is that he had his g-tube placement this past Thursday. He had been aspirating his Pediasure bottles and medicines, which caused several rounds of pneumonia for him this past winter....so, his gastro doctor decided this was best for him. It went well, but of course as is usual any time a (nearly) two year old has surgery, he's been cranky & struggling through this healing period. Seth prefers to sleep only on his tummy, and with a healing wound in his abdomen, this is difficult. And painful! So, please pray for rest, healing, and happiness for this sweet little guy!

On July 7th, Seth will have his second set of eustachian tubes placed in his ears. Another surgery. More anesthesia. Classically, Seth's seizure disorder(s) has been exacerbated by anesthesia. To say there is worry over being put under twice in a such a short time period is being gentle....it's pretty scary to think about! But we have been assured that it will be fine and we really dont have any other options. He needs the tubes - the left ear doesnt have a tube at all right now, which leads to a ridiculous amount of ear infections for the poor kid. He gets them anyway, but without tubes, his ears are like little time bombs, ticking away. He ended up at urgent care just today, with a nasty infection & ruptured drum in the ear that is missing the tube.

He just cant catch a break it seems.

Seth's seizure disorder has also seemed to change recently. A few months ago, his "infantile spasms" stemming from West Syndrome started to seem longer,more frequent and more dramatic. He has never had great results from any of the meds he has taken for this specific disorder - but they just seemed so much worse than they had been. Upon examination and hearing what had been going on, his neurologist diagnosed him (preliminary) with myoclonic jerks stemming from Lennox-Gastaut Syndrome. This has not been confirmed because Dr. Bernes (Seth's neurologist) wants to wait until he has both surgeries to do another EEG, but it seems quite likely. Lennox-Gastaut is very difficult to treat and does not respond well to medication. You can read more about this syndrome HERE.

It seemed appropriate to share with you all the medicines sweet Seth takes every single day! Here is our current list:

Sabril 2x per day

Klonopin 2x per day

Keppra 2x per day

Depakene 3x per day

Miralax 1x per day

Albuteral 1x per day

Pulmacort 1x per day

This is all of his morning medicine including one antibiotic and pain killer from the surgery

Seth has taken medicines - multiple medicines - since birth. He has ALWAYS hated it! So, one huge blessing of having a g-tube will be the ability to give him his meds straight through the tube! In addition, there are always days when he just flat refuses to eat at certain times (our stubborn boy!)....having the tube will allow us to make sure he has a full belly when he needs to and all of his meds - without the temper tantrum! :)

So, that's it for now! Please keep praying for healing for Seth - we are so thankful for your support & love for our precious little boy. And, dont forget...Wednesday is Seth's 2nd birthday and his 2nd ColdStone Fundraiser! So come on out, eat some yummy ice cream, and say "HAPPY BIRTHDAY, Im here for SETH"!

The Results, Some GREAT News, and a HAPPY BIRTHDAY, Seth!

Sorry this is a long time coming, we were waiting for some information before we posted about the final tally from the ColdStone Fundraiser.

We had a TON of people come out & buy ice cream for Seth! It was very touching to see how many people care about Seth and want to see him thriving, happy & safe! Thanks to all of you who came out to ColdStone, and to all of you who have donated directly through this website!

The ColdStone Fundraiser brought in a total of $700! And seperately, we have had Over $2100 in donations come through The Ortiz Family Foundation! What that means is that Seth WILL get his chair/table and other things that he needs! We are so grateful for all of the prayers and support we have gotten from each & every one of you!

Now, for some really great news - the owners of both ColdStone locations where the previous fundraiser was held have offered to hold a fundraiser for Seth on the second Wednesday of EVERY month through the end of 2011! So, get ready to get your ice cream fix at least once a month in Seth's name!

For the month of June, we will have the event on the 22nd. This is an AWESOME day for a fundraiser to support Seth - because it is Seth's 2nd Birthday! From open (11 am) to close (10 pm) at the ColdStone stores on Val Vista & Baseline and Frank Lloyd Wright & Thompsen Peak Parkway. Just mention Seth's name and 25% of your purchase will be donated to Funds for Seth!

June 22nd, 2011  11 am to 10 pm

ColdStone - Gilbert

3641 E Baseline Rd Ste Q101
Gilbert, AZ 85234 

This is on the SE corner of Val Vista & Baseline! It's tucked away in the lot but keep looking! 

ColdStone - Scottsdale
14858 N Frank Lloyd Wright Blvd Ste 165B
Scottsdale, AZ 85260

More details will follow - but PLEASE mark your calendars for another awesome day to support our sweet Seth...and to say "Happy Birthday" to a very special 2 year old!

ColdStone Fundraiser

We have been blessed with friends who were able to set up a ColdStone Creamery fundraiser for Seth! Please spread the word so we can get as many people as possible into ColdStone on May 11th! Just buy ice cream, and make sure you mention that you are buying it for Seth - 25% of all specified purchases from open to close (11 am - 10 pm) on May 11th will go towards Funds For Seth!

There are two participating locations:

Gilbert Location:
3641 E Baseline Rd #Q101
Gilbert, AZ 85234

Scottsdale Location:
14858 N. Frank Lloyd Wright Blvd
Suite 165B
Scottsdale, AZ 85260

DONT FORGET TO MENTION SETH'S NAME when you make your purchase! Thank you for your support for Seth!

The What and The Why

This is a fund raising blog, for the most part. We covet your prayers for Seth above all other things, but we do hope you will be able to help us in some other way as well! We are currently working on some fund raising events that we will keep you posted on - and you can also donate any time by clicking the "donate" button at the side of this page. All donations are tax deductible through The Ortiz Family Foundation.

What are we raising funds for? Three things that are immediate needs for Seth.

First, a service dog. We arent one hundred percent certain of exactly what kind of service dog will fit Seth's needs, that's something that will have to be decided with the help of the company that trains these dogs for service. The dogs cost $22,000 to train, and the families must raise at least $13,000 on their own. Then, we must fly to the facility to be trained ourselves for two weeks, which is an added cost. Service dogs also cost around $1000-2000 to maintain yearly.

Second, a vestibular rocking chair. Seth's brain needs vestibular input. A way to get vestibular input is to swing, rock, jump, spin, etc. Seth has always loved to be what we call "manhandled" - tossed around, rocked. When you are holding him he would be quite content to throw or rock himself backwards all day long! If we could buy him a vestibular rocking chair, he could rock on his own at the appropriate times and in a more socially acceptable way. If he is able to get enough vestibular input from a rocking chair, our hope is that it would allow him to focus on other developmental skills when necessary rather than trying to rock all the time. This chair costs around $2000, plus shipping.

(To understand better what the vestibular system is and what a person with sensory issues tend to do and need, please check out this page).

Third, a bed. Not just any bed, but a very special bed for a very special boy. Two major issues that keep Seth from being safe as he sleeps are his seizures and his lack of ability to see. He has a tendency to bang his head and injure himself when he wakes up and is playing in his crib. He has also had seizures in the night that have caused him to whack himself pretty hard, and as he grows & becomes stronger, the injuries will become worse. The Courtney Bed is a great solution to these problems. It is padded and completely enclosed in mesh, so that a person cannot fall out of it or wander during the night. This bed is expensive. It costs $5,500 without any help from insurance - insurance will not cover this bed in certain states, and most likely, ours is one of them. However, the creator/seller of this bed is willing to lower the cost of $4000 if insurance doesnt cover any part of it & we are able to raise that much on our own.

Seth's needs are great....but we know that God is greater! If you feel led to donate - every dollar helps and we appreciate it more than you could know! Please continue to pray for our sweet little guy....more updates to come in the (very) near future!

Seth's Story

"Most of the shadows of this life are caused by our standing in our own sunshine"

~Ralph Waldo Emerson

On June 22, 2009, a big, beautiful red headed boy came into this cold, harsh world. It was an easy delivery, a fast (and natural!) event - after so many months of waiting, we welcomed 9 pound 1 ounce Seth John Asher with happy, loving arms! Seth was perfect. He cried, he was pink, he ate well and slept well. He was such a blessing and a gift! Our daughter, Sydney, now had a baby brother, and we had a son! After a few very rough weeks for our family, we finally had our precious, beautiful boy...and for a moment, all was right with the world.

On June 23, 2009, roughly 18 hours after his birth, Seth was whisked away to the newborn nursery with what the nurse called "delayed breathing". Shortly after that, he was taken to the NICU with low O2 levels. Seth was placed on oxygen, and at this time it was discovered he had an enlarged liver & spleen. All they could tell us was that it meant he was fighting some sort of infection. "Do you have cats?" became a popular question. No, we dont have cats. Please dont ask us that anymore.

June 24th-25th were spent testing. Bloodwork, urine, MRI, ultrasounds - Friday, the 26th, Seth had an MRI of his brain, where they discovered extensive calcifications. We were told this was indicative of him having contracted CMV in utero. CMV? We had never even heard of it. By Saturday, the results were in and Seth was officially diagnosed with congenital human cytomegalovirus. Congenital means "born with". cCMV. Our son had contracted a virus while still in the safety of the womb, a virus that had ravaged his small body...and we never even had a clue.

The list of "abnormal" was long. Seth had breathing issues, low platelets, enlarged liver & spleen, severe kidney reflux, two holes in his heart & extensive brain calcifications, as well as a small cerebrum & cerebellum and underdeveloped optic nerve in his left eye. His prognosis was mixed. One doctor said he may have some learning disabilities, one said he would never be anything close to "normal". He spent 11 days in the NICU and then we took him home....to a world of fear, anxiety, guilt, sadness, wonder. Google became our best friend as well as our biggest enemy. We couldnt understand it - here was this horrible virus that can wreak so much havoc on an unborn baby, and we had never even heard of it!? And what would this mean for our precious boy, what would his future hold? We wanted to believe cCMV would not define our son, that cCMV would not define his life. We still believe that.

Today, Seth is a joy. Each day is a gift, and we are so thankful for his presence in our lives. It's been a hard 20 months, and it has flown by. Seth has had multiple surgeries - two for the kidney reflux as well as placement of ear tubes. He has had a total of 11 urinary tract infections. He has been diagnosed with mixed cerebral palsy, optic nerve hypoplasia and cortical vision impairment. He is legally blind.

Seth has been dealing with infantile spasms - or West Syndrome - for a little over a year now. He has been on every medication possible in an attempt to control his seizures. Ninety-eight percent of the time, this particular seizure disorder will develop into another kind of seizure disorder. We are prepared for a life of seizure medications for Seth. It's hard to watch him spasm, it's hard to wake up in the morning to find blood on his sheets and his clothes, and know he bit something during a nighttime seizure. Sometimes, it's scary too. There are so many things we cannot fix, so many things we have to simply watch our boy go through. We love him and yet we cant "fix" him, no matter how much we want to. We cant take his pain and make it our own, we cant give him our eyes with which to see the world or our legs with which to walk. That just wasnt meant to be.

Seth has physical, occupational, feeding and speech therapies once a week. He rolls over both ways, claps, plays with toys. He laughs, babbles, responds to touch & the sound of our voices. He has perfect hearing - supersonic, we call it - and we are so thankful for that. We are working on getting him to sit up and to crawl, as well as eat solid foods. We have watched him gradually but continuously fall off the charts in weight....our once roly poly big guy is now quite skinny, he doesnt have any extra chub to spare anymore. But he's still beautiful. He's still precious. He still an amazing, wonderful gift from God.

God is bigger than CMV. He is bigger than seizures, CVI, kidney reflux. We know that with one wave of his mighty hand he could heal our baby. We pray that he would, but we know that God's plan for Seth's life is so much bigger than anything we could dream of. We are just thankful that he has seen fit to choose us for Seth...that we get to share our lives with this incredible boy.

"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me".

~ 2 Corinthians 12:9

Moving Forward

So excited & encouraged after a wonderful meeting with two very special people tonight. Keep watch, y'all....big things to come.

Please check in with us as often as you can - we plan to have "Seth's Story" published on this blog in the next few days, and more information on where we hope to go from here.

Our main concern right now is to raise money for Seth's immediate needs, and we will have detailed information on those needs shortly. Our next concern is to eventually STOP this virus called CMV from effecting children & their families.We cannot "Stop CMV" by our awareness alone. But, by bringing about awareness in others, we hope to draw enough attention to our cause that one day a vaccination will be attained - and we can stop CMV dead in it's tracks.

Welcome To Holland...

Welcome To Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely hings …about Holland.