Sarah Bear's Story

End The Wait Now! Campaign

2009-11-11T16:24:00.010-05:00

Ordinarily, I try to focus on the positive in this narrative -- but this time, it's not possible. For starters, I'm filled with sighs and "OMG! . . . how could I have . . .?" laments for having failed to save my work that I was developing in Notepad to post to this blog. I didn't, I encountered a fatal system error, everything was lost, and this will be a very short post.

It originates in my frustration over the past several days to locate any timely, accurate, complete, and RELEVANT information at my State or County levels regarding help needed for Sarah. Already my husband and I had earlier reached our health plan's out-of-pocket expense (or "catastrophic coverage") limit for Sarah's medical and dental care. Meanwhile, however, the State had also determined her to be eligible for Medicaid as her insurer of last resort, even to pay toward necessary in-home care.

So in pursuit of what we hoped to help with our continual hemorrhage of money, it seems, I expended hours on the phone with State and County service providers. I also drilled down on their Websites, searching for information to better equip myself to navigate the maze. My goal was to "connect" her service determination, which was acknowledged to be "in the system," with receipt of a bona fide check or a funded service or item that she needs.

Well, despite the polite promises of those I talked to or the fine-sounding "Mission Statements" on their Websites, it turns out it was all shameful puffery. At best, good intentions, perhaps, but nothing more. The bald facts are these, and they aren't pretty (as I found out elsewhere on my own initiative):

As of September 2009, there is a waiting list of just over 19,000 individuals with severe developmental disabilities, including cerebral palsy, intellectual/cognitive deficits, autistic spectrum disorders, neuromuscular diseases and more in the State of Maryland! Many of them are in crisis situations, and 94% are in need of at least one service immediately.

Developmental disabilities are those that are significant, life-long, and begin at birth or during childhood (through the age of 21). BUT, while Maryland is a wealthy State, with the lowest rate of poverty nationally, it ranks 43rd for monies spent for assistance to this very same population. For the 22,000 affected individuals currently receiving help of some kind, State appropriations for the 2010 year were recently slashed $30 million, with additional budget cuts expected this month.

On its face, it seems clear to me that it's the "least among us" who are the most vulnerable and who are bearing disproportionately the cutbacks in State and local services due to our struggling economy. So my questions are two. First,"Oh c'mon! Why don't the government agencies involved just put on their Websites straight out 'Abandon hope all ye who enter here!' and instruct their people to be honest on the phone about a crisis situation." And second, and more importantly, "Why don't our State legislators attach some urgency to this and work to build out system capacity to end the multi-year wait?"

For more information, including personal stories, pictures, and videos, or to advocate on behalf of all those in Maryland with severe developmental disabilities, go to "End the Wait Now!" campaign, a targeted effort by the Developmental Disabilities Coalition.

Pennies For The Holidays

2009-11-07T15:23:00.010-05:00

Do you hate the holiday “rush” as much as our family does? Especially now more than ever, trying to balance household needs with holiday gifts and charitable giving in rough economic times. Smart shopping means facing hard choices while trying to stretch every dollar, and even every penny.

Well, it’s official –- we're penny hoarders! We L-O-V-E them! And we now have an account at iGive.com where you can buy the things you need, save money with exclusive iGive coupons and deals, and benefit Sarah’s medical expense fund all at the same time! Pennies from heaven!

It's a free service, and you'll never pay more when you reach any of 700+ online stores you know and love in the iGive network. You'll find everything from daily necessities to special occasion and holiday gifts.

Here's how it works:

If this works for you, then save yourself a trip to the mall and avoid the long lines. Besides saving gas and time, you're helping us raise funds that are much needed and appreciated. [Note: iGive.com requires the name of an adult signatory when describing an account, so that's me, Sarah's Mom (Michele Pulaski) at Sarah Bear's Story.]

In closing, I was searching on the Web for some copyright-free images of pennies to decorate the "package" above, never dreaming that there are entire communities of numismatic penny hoarders and coin-stackers out there. Some of them specialize in building all manner of complex, cantilevered structures, made up of thousands of pennies. And some, like the "Penny Prankster," make really funny videos for good causes, like the one below.

Hey, we take pennies, too, but for used DME (that's durable medical equipment, where a pediatric wheelchair can cost as much as a car, actually). Remember, the places to go online are:

http://www.iGive.com/SarahBearsStory (for purchases), and

http://www.iSearchiGive.com/SarahBearsStory (click for pennies)

Thanks again!

Reaching For Milestones

2009-11-07T11:12:00.010-05:00

That old saying that "Slow and steady Wins the race!" is so true. From our own experience, I know how poignant it can be for parents of children with special needs to cheer them on at every turn. And from reading the daily blog diaries of these parents, I share in their afterglow of pure joy at seeing our kids succeed. In our home, Sarah Bear continues to improve little by little. It seems like the smallest accomplishments take forever to achieve. And yet, when she hits a milestone, there is no better feeling in the world! Since Sarah was not predicted to do much at all, I take pleasure in the fact that she is proving the doctors WRONG!

Last week, Sarah started trying to crawl. After having worked on it for so long, it just happened -- at Sarah's pace! That's the thing. Sarah is ready when SHE is ready, and not before. While she undoubtedly has a strong will to do things, it's just on her schedule.

And so, she continues to improve with her undertanding of language, and can press a button on her toy when she wants to hear music (which she loves) . She also has started saying "Da Da," and even shouts "DONE!" when she finishes a meal. So, when I have my moments of "Why did this happen to Sarah?," I think about her smile and how she laughs when I tickle her. Then I remind myself what I said from the first day she became ill . . . if she can be happy, then that's truly all I need.

The "Pink Piggy" Van and H1N1

2009-11-06T17:15:00.011-05:00

Yesterday afternoon, I was fortunate (to my surprise) to be able to get at our pediatrician's office swine flu shots for Sarah, Josh, and Emma. No-o-o!, the office wasn't mobile, and it sure didn't look anything like this van. Not that the humor of the moment would have trumped my children's outrage, even if it had. After all, I was culpable. I had suffered them to be vaccinated point blank. I was unforgiven for so long as it took to drive home and their little arms ached.

To be sure, whether or not to vaccinate for H1N1 at all, as well as what steps to take to care for one's child if s/he does get the flu, continues to weigh on parents' minds across the country. In addition to frequent hand washing to prevent the transmission of germs, many of us have also adopted instant hand sanitizers. I know that I, for one, carry them around in my purse, in the car, and packed in with kid gear to have on hand for those moments when we can't wash up. So far so good. Surfing the Web, though, my attention was drawn to an article about the dangers of their improper use.

Yes, under ordinary circumstances, instant sanitizers safely and effectively destroy the majority of bacteria and viruses that can cause illnesses. They are, however, potently toxic chemicals that can cause unintended injury. The most familiar danger is hand sanitizer poisoning, especially in the very young. Most sanitizers contain 60 percent to 90 percent alcohol (commonly ethyl or isopropyl alcohol) -- a stronger concentration than most hard liquors! If ingested, even a small amount could lead to dizziness, slurred speech, headaches, and even brain damage or death in extreme cases. That translates into being certain to keep them out of sight when not in use, and out of the hands of inquiring little people who might be attracted by their scents or packaging (like my three "peeps") . . . fer shur!

For an outstanding resource, the "Special Needs H1N1 Toolkit," spotted by Randi Sargent, see her post on "Helping Our Children Understand Flu Prevention."

For straight talk about the flu and you, facts for specific patient populations, a State-by-State flu clinic locator, and more, don't miss http://www.flu.gov.

And catch this cute video PSA for small kids, entitled "Getting a Shot: You can do it!"

(double click the video to see a larger version play on YouTube.com)

Photo Credit: See Ellen's post, entitled "Update On The Swine Flu" at To The Max featuring the "Pink Piggy van."

Parenting In Survival Mode

2009-11-05T14:59:00.011-05:00

Among the many things I am learning as a "newbie" to the blogosphere are the wonderful resources provided by families with special needs. Having just earlier today become a March of Dimes advocate to fight for healthy babies, it wasn't easy for me to revisit painful memories of Sarah in the NICU fighting for her life. So was I amazed (and pleased!) to stumble upon a truly wonderful Website designed to build a robust network of volunteers to help provide basic needs to parents with children in the NICU and PICU. The creator, Mandy, whose energy and generous spirit are truly inspiring, matches bloggers who can help to bloggers (or non-bloggers) who need help at this difficult time with their child.

Click on the link to go directly to Survival Mode Parent and learn more, including the locations of volunteers, and be sure to read the wonderful NICU primer, written by a remarkable Mom, whose own little girl, Maddie (short for Madeline) died just seven months ago . . . then read her touching, latest post at In the Scheme of Things . In honor of Maddie and the joy she brought her parents and family, the poem below expresses a beautiful sentiment, I think.

God Sent to Me an Angel
Written by Paul Dammann

God sent to me an angel, it had a broken wing.
I bent my head and wondered,
"How could God do such a thing?"
When I asked the Father why
He sent this child to me,
the answer was forthcoming,
He said "Listen and you'll see."
"My children are all precious, and none is like the rest.
Each one to me is special, and the least is as the best.
I send each one from Heaven and I place it in the care
of those who know my mercy, those with love to spare.
Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen.
I am never far away.
So if you find an angel and you don't know what to do.
Remember, I am with you,
love is all I ask of you."

Hat tip: Poetry Soup For The Soul

Help Fight For Healthy Babies

2009-11-05T13:43:00.006-05:00

Every year, 20 million babies are born too soon, too small and often very sick. Both Sarah and her brother were born prematurely, each of them vulnerable to serious health challenges. As parents, my husband and I know the joy of two precious little miracles, as well as the fear and anxiety we felt when our babies were in the NICU, too fragile to bring home. But while Joshua is now developing normally, Sarah's battle with the ravages of meningitis that struck without warning and which have resulted in lifelong disabilities is only unfolding. Please join us and other bloggers in the March of Dimes' Fight for Preemies event on November 17th by clicking on the image above to find out how.

Velvet Throws

2009-11-04T12:45:00.008-05:00

Do you have trouble as we do decorating "tastefully" around durable medical equipment (DME)? -- the ever-growing assemblage of gait trainers, positioning equipment, bath and Hoyer lifts, standing aids, portable ramps, scooters, and wheelchairs? And that's just for starters. Add in the tumult of three energetic little children, fondly dubbed the "wrecking crew," their toys and improvised playthings (just about anything will do! for merriment), and there's a growing conviction that we need more space and our house is too small.

At first my husband and I considered adding on an addition. We also considered velvet throws. Velvet throws were my mother-in-law's suggestion to cover up the DME and any other daily detritus that couldn't be picked up, swept away, flushed or otherwise disposed of out of sight, but in a manner, of course, that seemed purposeful and aesthetically pleasing. She had learned this trick as a young girl, it seems, when she used to visit an elderly neighbor who lived in a Queen Anne Victorian mansion. The mansion had been built by the old woman's forebears who were railroad magnates, and boasted 10,000 daffodils blooming on the lawn every Spring (and in the Winter, gaily colored rags tied on to the deciduous bushes banking her driveway to "punch up" the appearance of pale skies overhead). Anyhow, the house staff had a multitude of velvet throws -- ruby red, terullian purple, gold -- and spread them about purposefully to tidy up the place for guests, recounts my mother-in-law with laughter.

For us, it's "oNay" ("No" in Pig Latin) on the throws. For now, we're thinking of what changes we need to consider to make our living space more workable -- changes designed specifically for Sarah and her Daddy, too, to ensure that we end up with the features that we must have (and, hopefully, can afford) for the future. It may be just easier to move. While we are fortunate now to have one-floor living in a ranch-style house, its footprint on our property is a big limiting factor, making it either too difficult or prohibitively expensive to adapt. Yes, we could add on a floor and a two-story home can certainly be made wheelchair accessible, but the space and money required to install an elevator is not something we have.

Yesterday, the kids and I checked out a nearby property where the house was delapidated and the seller anticipates its being torn down and a new one built. I looked at it with pictures in mind of different architectural plans drawn specifically for people with disabilities in mind. Unfortunately, the lot, while it was in a very desirable neighborhood, did not support any of them. So, we will keep looking, I guess. I should say that, while cramped, our rancher is fortunately what architects call "visitable" -- a term meaning that our house meets three design criteria:

a zero-step entrance,

doors with 32-35 inches of clear passage space, and

one bathroom on the main floor with wheelchair access.

We also have an open floorplan in the main living areas that allows a bit more ease for a person who uses a wheelchair or walker to negotiate. (Let's see -- that's Sarah, Daddy, Nana Anne, Great Grandma, and a cast of family and friends at various times in recovery from running injuries, knee replacement, therapy for pelvic instability, and more.) What we're shooting for, though, is what is called "Universal Design" where even more architectural features are standard, with a vision of creating a barrier-free, "lifetime home" that allows it always to remain functional.

Heading home, we packed it in and stopped by Nana Anne's to enjoy her pond and geese. The Fall colors don't get better than this!

All In The Family

2009-11-02T14:52:00.006-05:00

This was just too good not to share -- a picture of Sarah Bear next to a photograph of her Nana "D", without whom this household could not run. Hmmmm. . . a great idea . . . Nana "D" being recruited to be a regular contributor to this blog. We like it!

It's all in the family, right?

Looking Toward Intensive Therapy

2009-11-02T14:25:00.003-05:00

Let it never be said that households with a disabled child in the family aren't busy . . . B U S Y! This morning our energy burners were on high as Sarah, her Daddy, and Grandma were off to the neurologist for light anesthesia first, followed by injections of Botox (Bolulinum toxin) in select spots in Sarah's feet and calves to treat focal spasticity. Spasticity means a state of increased muscle tone and heightened deep tendon reflexes such that Sarah's legs, for example, feel tight and rigid. Her knee jerk and foot reflexes are also exaggerated. Research shows that Botox helps improve motor control and functional movement patterns in children with cerebral palsy (CP) by permanently blocking the release of an important chemical, acetylcholine. It does this at the point where the nerve joins a muscle, thus preventing it from contracting. This blockage is irreversible and the affected muscle atrophies (or "dies"). The result is functional recovery in patients -- or the better use of their limbs -- within a few months, especially when used with and followed by intensive physical therapy.

Through intensive exercises, our hope is to use to the maximum all of Sarah's existing abilities linked to her motor performance to create positive --and permanent! -- changes in her overall neurological, skeletal, and muscle systems. And we'll be starting soon. Gosh, we love this little girl! What a trooper! Already she's a diva whose wonderful in-home therapists have worked with her to optimize her health and well-being using a variety of innovative pediatric PT exercises or training programs. In a strict sense, these will not heal or change the damaged structures in her brain. Nonetheless, her body can respond to exercise in exactly the same way as that of an individual without CP. Moreover, the brain is constantly reorganizing structurally and functionally in response to input and injury. What does this means? It means that early intervention for children like Sarah can promote the development of alternative pathways in the areas of the brain that control muscle coordination and movement. Most plasticity occurs before age 3 years, and Sarah is now 2-1/2 years old.

Below is an informative video from the American Association of Intensive Pediatric Physical Therapy that is an excellent source of information and research for parents of disabled children.

Promoting alternative brain pathways to enhance motor skills such as mobility and critical self-care ability is only one area of current interest to researchers. Other areas include how to repair or replace non-functioning or injured brain cells and cell-cell connectors (the "wiring" system), how to expand and sustain regeneration of brain cells, and how to promote stem cell population in the right place at the right time. (Stem cells are so-called "primitive" cells that can develop into any cell line and exist in human brains throughout life.) But writing more about that is a post for another day, and probably by Sarah's Daddy, as he's the family expert as we explore pursuing stem cell therapy too.

Are You Ready To Scream Yet?

2009-10-31T09:32:00.022-04:00

H a p p y H a l l o w e e n!

Photo credit: Aunt Sam's and Uncle Mark's cat, "Willy," a truly remarkable and much loved fellow who dressed up for tonight's spook-tac-u-lar!

Mee-ow there, friends!

Let me tell you a wee bit about Halloween that you may not know. It all began in Ireland and Scotland a few hundred years ago when hollowed-out turnips with candles or embers inside became a very popular Halloween decoration. The English used beets which they call "beetroots"). Anyhow, I'm a Scotch-Irish cat who is the namesake of Sarah Bear's great-great-great-great grandfather, William Byron Taneyhill, and I know these things . . . about pumpkins, that is.

Pumpkin carving all began with an Irish legend about a man called "Stingy Jack," who was known for being a cheapskate. Soooo cheap, in fact, that he avoided losing his soul to the Devil by tricking him one night. The night was "All Hallows' Eve." First, Stingy Jack invited the Devil to drink with him, knowing that he didn't want to pay for it, of course. So he convinced the Devil to turn himself into a coin so that Jack could pay for both of their drinks. Once the Devil had done so, however, Jack took his own drink but pocketed the coin! Eventually, Jack freed the devil, but only after the Devil promised not to take Jack's soul.

At his death, Stingy Jack was turned away from Heaven due to his life of sin. But, because of their bargain, the Devil wouldn't take Jack either. Instead, he was cursed to travel the spirit world forever in limbo. As Jack left the gates of Hell, the Devil threw him a hot ember to light his way in the dark, which Jack placed in a hollowed-out turnip. According to legend, you might see Jack's spirit -- "Jack of the Lantern" (or later just "Jack-o-lantern") -- on "All Hallows' Eve," still carrying his turnip lantern through the darkness.

When Scotch-Irish families emigrated to America (Sarah's and my forebears came in the early 1660s), they brought this tradition with them, using pumpkins instead of turnips to ward off Stingy Jack and other malevolent spirits on Halloween.

The View From Pumpkinville

2009-10-30T15:07:00.014-04:00

Well! Halloween is upon us, when "all the ghoulies and beasties go bump in the night!" (Oh my!) I wonder how many trick-or-treaters will be out tomorrow night for fun, fancy, and candy.
Here's the scene at Pumpkinville. where our family goes each year to shop for a pumpkin to carve, although we have yet to make toasted pumpkin seeds, which Sarah's daddy says are very good.

We'll be watching at our door, of course, to greet all the kids in our neighborhood tomorrow, hand out the goodies, and compliment everyone on their costumes. It's always so much fun to see imagination at work and what people decide on to wear. Last year, for example, Sarah and her twin brother, Joshua, dressed up as Little Red Riding Hood and the Big Bad Wolf. Just two twins like two peas in a bucket! Here they are below:

Yep, we're pretty sure they're just . . . .

Bids For Sarah Bear Online Auction!

2009-10-29T10:15:00.011-04:00

An update to our earlier post about an online auction planned to raise funds for Sarah's medical expenses. Across the past two and one-half weeks when our household was running at half steam, I realized that holding the auction this Fall in 2009 was just too ambitious. We have received some wonderful goods and services donated for auction, as well as generous offers of volunteer assistance to help us mount it, and extend our thanks to everyone! But with a bout of intensive physical therapy sessions coming up for Sarah and just next week even, Botox treatment to help reduce her muscle spasticity due to cerebral palsy, I realized the need to reset the auction to Spring 2010.

So we'll definitely look forward to seeing you then! We've got items for auction that are going to wow you!

Meanwhile, about the use of Botox, we have used it before after closely consulting with Sarah's neurologist and always watch her very closely. The use of Botox to treat muscle spasticity in cerebral palsy is not without a lot of worrisome risk, and has received a lot of stepped-up attention this year from the US Food and Drug Administration (FDA), which has never approved botulinim toxin for this use. Early this summer, it issued a warning statement to be placed on labels about possible negative effects. The agency's recommendations to parents and healthcare providers include:

Be alert to and educate patients and caregivers about potential adverse events due to distant spread of botulinum toxin effects following local injections including: unexpected loss of strength or muscle weakness, hoarseness or trouble talking (dysphonia), trouble saying words clearly (dysarthria), loss of bladder control, trouble breathing, trouble swallowing, double vision, blurred vision and drooping eyelids; understand that these adverse events have been reported as early as several hours and as late as several weeks after treatment; advise patients to seek immediate medical attention if they develop any of these symptoms.

If a child does have a bad reaction to Botox treatment, the FDA suggests reporting the incident through its MedWatch Adverse Event Reporting Program.

We're B-A-A-A-C-K!

2009-10-29T09:23:00.005-04:00

Well, we're back! Me and our whole household after an unexpected -- and basically uneventful, thankfully! -- bout with an unknown, seasonal malaise that caused headaches and fitful sleep, along with low grade aches and pains. Somehow we managed still to navigate getting flu shots, although not the H1N1, because it is not yet available at our pediatrician's office. Our county public health department has also run into a shortage for distribution. While many parents have anguished over whether or not to get the H1N1 vaccination for their children, based on news stories that the vaccine may not have been adequately tested for safety, here's my take on it:

For myself and my husband, we still feel uneasy -- just because the media has worn us out so -- but plan to go ahead and vaccinate Sarah, her brother Josh, and baby Emma. We trust the findings of the US National Institute of Allergy and Infectious Diseases (NIAID) that has been conducting a series of trials in children age 6 mos-17 years. Here's how the results have broken down:

Preliminary analysis of blood samples from trial participants showed that a single 15-microgram dose of a non-adjuvanted 2009 H1N1 influenza vaccine – the same dose that is in the seasonal flu vaccine – generates an early (within 10 days) immune response that is expected to be protective against 2009 H1N1 influenza virus. (An "adjuvant" is a substance added to a vaccine to boost the immune response to the vaccine if a boost might be needed.)

Generally, the early responses of younger children were less strong. Among those aged 3 to 9 years old, a strong immune response was seen in 36 percent. In the youngest group, between 6 months to 35 months old, a single 15-microgram dose of vaccine produced a strong immune response in 25 percent. NIAID researchers expect that these immune responses will be similar to those for the regular, seasonal flu vaccination and will continue to rise for several weeks following after getting vaccinated. NIAID's study is being closely monitored by the trial physicians and staff, as well as by an independent safety monitoring committee.

For further information about NIAID-sponsored clinical trials of 2009 H1N1 influenza vaccines, see the following NIAID documents: Overview: Pediatric Trials; and Trials in Pregnant Women.

"That" Dream

2009-10-28T11:12:00.001-04:00

I had a dream the other night that my Sarah had passed away. In the entire 2 1/2 years since she had become ill, I've never had "that" dream. I'm not sure what it means. Maybe it's because I'm more stressed out than I've ever been trying to make sure that my three children including Sarah get the best love and care that they can, while trying to juggle the every day errands, work load and appointments. So, although I was the person who always wondered what my dreams meant, I don't want to know why I had it or what it means. All I know is that I try not to think about life without Sarah because that is just something that frankly I refuse to think will ever happen, but I am also realistic that after she had such a rare infection that I guess anything is possible. However, I do what I always do every morning and dust myself off after a rough night with little sleep and start another day with my three miracles . . . and hope that today will be one filled with joy and less heartache.

The Reality We Live With

2009-10-26T13:15:00.000-04:00

There is a blog that I follow from time to time and an entry from a mom who has a daughter who not only looks like Sarah, but has some similar issues. I posted her entry below along with her Website because her post really hit home for me and describes the way I feel.

From http://babybrookie.blogspot.com/

"I spend quite a bit of time focusing on the positive in this blog. You'll notice that there are large gaps of time between postings. We live a good life, a happy life, a life filled with love and laughter and all those things people hope for. I won't take away from any of that for a second. With that being said, I feel as though I sometimes misrepresent the reality we live with. I don't know if I do this for everyone else or for myself. Perhaps I feel guilty being entirely realistic. Perhaps I don't want to put it all down in writing, because that's admitting it to myself and facing the truly difficult life we live. And I thought to myself . . . how could everything look so perfect, yet be so miswired inside. How could this life be so cruel to my little angel? Her long dark lashes were resting so perfectly on her pink cheeks and her curly hair lay peacefully on her pillow. When I look at her like that, I can imagine her opening up her eyes and smiling at me, saying "Mommy" and reaching up to cuddle. I can imagine her hopping out of bed and running to Julia's crib to see if she is awake. That's what Brooke wants to be doing!

I am thankful that my little girl does smile. She may not look at me when she smiles, but she smiles at me. She is saying "moma". She likes to cuddle and hug. I am so thankful that we can share those human necessities. I realize that so many people don't get that from their children. I don't take it for granted. But my God . . . I want her to walk. I want her to not be frustrated because she can't crawl and speak and digest her food. She is on this diet that we are so grateful for. Without it, she would still be seizing multiple times a day. Without it, we may never have met the Brooke that we know now. Again -- with that being said -- why can't she live without this diet that makes her stomach cramp, constipates her to the point of needing daily Miralax, tastes horrible, and restricts her eating so severely.

Why!!

Tonight she threw up for the 2nd time today. This simple head cold is a lot for her inexperienced body to handle. She struggles with the mucus because her brain cannot tell her muscles to fire correctly and expel it from her lungs. She gags and cannot stop herself from loosing it all together. We take a little Robitussin or NyQuil and move on with our day. Brooke cannot take these medicines because they contain sugar and that would put her out of ketosis.

She's asleep now. We have the head of her bed elevated. We have blankets rolled up holding her in place. We have her hooked up to her pump with a slow drip of water and a Farrel bag that allows gas to escape from her stomach as she sleeps. That is our reality tonight. One last time -- with that being said, she lays there with her long dark eyelashes resting on her beautiful cheeks. She has her Binky in her mouth, and she is hugging the teddy bear that lights up her bed at night. She looks perfect. Minus all the tubes and strange bed, she looks so perfect. Like she was supposed to end up with this hand in life. Like we were all supposed to be blessed with her. Then again, she also looks like she should be able to crawl out of her sleep safe bed in the morning and into our bed. Like she should be able to wake me up to make her sugary cereal or pancakes.

We have so much to sort through on a daily basis. This is an exceptional life that we live! We have been given a chance to experience something most people never come in contact with. Tragedy mixed with pure joy and love. They can all be wrapped up in one congruent package. I can feel the worst pain and feelings of loss and anger and in the same day I can feel so much hope and certainty. Quite amazing, this life I have been given. Thank you for choosing to be a part of it. Thank you for allowing me to share it with you. And from now on . . . thank you for letting me be very honest about it all -- for all of our sakes."
Posted by Brooke DeMar

"Let's Talk Live!" | News Channel 8

2009-10-10T15:17:00.008-04:00

Wow! Yesterday was exciting. Sarah and I were guests on "Let's Talk Live!," a noon daily talk show hosted by Rebecca Cooper and Doug Mckelway weekdays. It was exciting to visit a real, live television studio backstage, and especially to be able to spread the word in our community on behalf of Sarah's family about our fundraising efforts to help meet some of Sarah's extraordinary medical expenses due to pediatric brain injury. Already we are working hard to line up sponsors and donations toward an online auction this Fall. All of the proceeds will go directly to Sarah's Special Needs Trust Account (as do donations made on this site. You need not have a PayPal account yourself to be able to donate using any major credit card).

Doug and Rebecca could not have been nicer or more attentive hosts. They also asked incisive questions that enabled Sarah and I to be a voice to spread awareness among other parents about the dangers of Group B streptococcal bacterial disease, or GBS for short. (Sarah caught it as meningitis as a young infant, resulting in profound brain deficits.) Below is our appearance on the show and talk on GBS. The heartfelt calls and e-mails that we have received after doing the show have been very moving and all of us in our family are very appreciative.

Credit: News Channel 8's Video Vault

Requires Windows Media Player 10 or higher

Another Story of Hope

2009-10-05T16:15:00.000-04:00

Another story of hope from stem cell therapy, I just caught on the 'net via the Associated Press. An 8-year-old girl from Titusville, Florida, with spinal muscular atrophy, just returned from a trip to China for treatment with stem cells. Her family says she improved each of the 34 days she was there. You can catch the full story here.

While the cost of the injections' was a formidable $36,000, stories like Sierra's (the young girl from Florida, and of Andrew with cerebral palsy (see his before and after video here on this site), are the very stuff that quickens the ardor of me and Sarah's dad to see that she benefits also.

HBOT Explained

2009-10-03T16:47:00.000-04:00

One of the questions I am frequently asked is "What is HBOT?" Well, for starters, it's an acronym for "hyperbaric oxygen therapy," a method of administering pure oxygen at greater than atmospheric pressure to a patient. In HBOT, a patient enters a special, pressurized "chamber" and receives up to 10-15 times more oxygen than s/he would under normal conditions. As a result, medical literature has documented that some of the effects of HBOT include enhanced immunity, renewed or accelerated growth of blood vessels (especially in the case of non-healing wounds), and reduction in soft tissue inflammation and swelling. For some children with moderate to severe cerebral palsy (CP), there is also evidence that HBOT improves motor skills, attention, language, play and, in still others, improves vision. Here is a money quote from a well-known research study conducted at Cornell University:

"This increase in attention is particularly important for children must be aware of their environment in order to learn. This represents a direct impact on cognitive functioning. The main differences between HBOT and traditional therapies are the rapid gains over time: and the impact on cognitive skills which, in general, are not improved by PT, OT, and speech therapies."

Recently, more research has been undertaken to examine whether changes in children like Sarah, who have CP, are the direct result of increased levels of oxygen -- as if the oxygen awakens "sleeping brain cells" as it were -- or the result of the intensive contact with the parent or other adult who accompanies them into the chamber.

Sarah and I have already experienced a partial course of HBOT (we were unable to complete a full coures) and found it hugely beneficial. Below is a video clip explaining more of what HBOT involves.

Credit: The RehabMart

Paths to Treatment

2009-10-03T13:56:00.000-04:00

Stem cell therapy is a modern marvel, and something her father and I aim to pursue for Sarah. The basics of understanding the promise of stem cell treatment are described at the Stem Cell Information Center, a service of the US National Institutes of Health (NIH). And its implications for those with cerebral palsy (CP) even more dramatically described on the website of 4MyChild, a foundation dedicated to advancing CP research and providing centralized access to current information about cutting-edge therapy and treatment resources. For example, many special needs children (including other disabilities beyond CP, such as autism, spinal atrophy, and muscular dystrophy) have benefited from unique therapies enabling them to take their first steps after years of immobility or reliance upon a wheelchair. Many such cases have occurred in China, and you can catch still more details (and often videos) that have been published on China’s leading Stem Cell News site at http://www.stemcellschina.com.

Below is a video from earlier this year (2009) of a toddler, Andrew Ricci, with cerebral palsy (CP) who received two courses of treatment in China with noticeable improvements. Like Sarah, Andrew was born a "preemie," weighing only 1lb 9oz at birth. Despite a rough beginning (97 days in the NICU, followed by incubation for another six weeks), his father describes him as a precocious and happy child. You can watch the video to hear him describe Andrew's clinical condition "before" and "after" or read excerpts from the transcript here.

Andrew Ricci -- Cerebral Palsy Stem Cell Patient from Stem Cells China on Vimeo.

Step By Step

2009-10-01T12:26:00.000-04:00

According to information published by the US Centers for Disease Control and Prevention (CDC), group B streptococcal (GBS) disease has been the leading bacterial infection associated with illness and death among newborns in the United States since it first emerged in the 1970s. In infants, GBS disease, the very same syndrome that befell Sarah, is characterized as either early-onset (occurring in infants <7 days of age) or late onset (occurring in infants >7 days of age). And, as also with Sarah, who was born a "preemie," approximately 25% of the cases of neonatal GBS disease occurs in premature infants. In her case, GBS disease manifested itself as neonatal meningitis. Overall, the case-fatality rate for GBS disease is estimated to be 5%–20% for newborns.

Like Sarah, survivors of neonatal meningitis are more likely to have moderate-to-severe disabilities than are other children, including cerebral palsy, seizures, cognitive and learning deficits, visual and hearing problems, and often other, more subtle disorders. Growing up with the long term effects of neonatal meningitis, or persistent brain injuries, means taking each new day one step at a time. Among the various treatments we have experienced are:

Drug therapy to prevent or control seizures associated with her cerebral palsy (CP) and/or to help reduce painful spasticity in her muscles.
Botox injections to provide reduced spasticity, increase range of motion, and reduce continuous fisting of her hands.
Gait training using a special device that simultaneously controls Sarah's weight-bearing ability, posture, and balance over a treadmill or over ground.
Patterning (both physical and auditory), in which Sarah lies down while others move her arms and legs or repeat sounds (often with music) for mimicry in a way that is said to stimulate brain activity.
Dietary considerations to watch her weight since she's not as mobile as we hope she will become.

Below is a short video clip that demonstrates how a gait trainer is used. For now, Sarah must use her wheelchair most of the time, and, of course, she's much younger than the young child viewed in the video. But as Sarah faces her challenges, every day brings new advances -- step by step.

Connecting Socially

2009-10-01T12:00:00.000-04:00

There's a lot to do on my "To Do" list, and one of these is to open a Twitter account so I can better spread the word to people -- friends and strangers alike -- about this blog for Sarah Bear. "Let them eats tweets!,"it has been said of Twitter, the microblogging service that lets one post and read fragmentary communications at high speed. This way I can leverage what sociologists call “ambient awareness” to describe this sense of physical proximity among users of digital media to publish updates on how Sarah's doing, new and alternative treatment possibilities, and research in the area of pediatric brain repair.

When all is said and done, tweeting makes it easy for folks to stay connected. And as if my self-promotion were not transparent enough already -- my TwitterID is "SarahBearsMom" -- I can't wait to plan our first "tweetups" (offline group meets of Tweople, as Twitter users are called) for auctions to benefit Sarah's special needs expense fund.

Blogging for Sarah

2009-10-01T09:33:00.000-04:00

Whew! Today's the day! I finally have a moment in which I can catch my breath, take a pause, and start a blog to tell my sweet Sarah Bear’s story (we call her Sarah Bear in the family because she is so cuddly!) Sometimes the rush of day-to-day activities in our household with three young children under age 3 can feel like trying to read a newspaper in a high wind.

A week or so, for example, we held our first sponsored drive to raise funds for Sarah's special needs expenses at Cici's Pizza! Donations to help pay for the treatments we seek to help heal Sarah’s brain injuries -- hyperbaric oxygen therapy (HBOT) and stem cell replacement -- came to 15% of all customer receipts who mentioned Sarah specifically. Hmmmm! Not only was the pizza good, but our drive was a huge success, thanks to Cici's and all of our friends and supporters who turned out!

Fall 2009 Auction

2009-09-30T15:06:00.006-04:00

UPDATE! (10/29/09) We're moving the auction to Spring 2010!

If you think sponsorship might be right for you, please know we offer:

Your business name included in all promotions for Sarah Bear's Story
A link to your business Website via the Sarah Bear's Story Website
An opportunity to display your products/services and information at our 2010 Online Auction (TBA)
An invitation to our Spring 2010 Online Auction Sponsor Appreciation Night

The Bids For Sarah Bear Online Auction is coming up soon (TBA)! Thanks to our donors, sponsors, and bidders, we hope to raise $$$ for Sarah's medical expenses.

Be sure to check back on this site, subscribe to our blog feed, or follow us on Twitter (TWITTERID="SarahBearsMom") for the date and details! Thanks again, and we hope to see you at our Fall, 2009Auction!

Auction Rules and Procedures

General Procedures:

The auction will be opened on a weekend, either a Saturday or Sunday, at noon and run for one (1) week. ALL proceeds from this auction benefit Sarah and will be paid directly to Michele Pulaski.

Bidding:

All participants must register in order to bid. You will be registering with your active e-mail address and an encrypted password of your choice. The e-mail gives us a way to identify and contact you regarding your bids and items. No payment information will be required at this time.

Each item will have a minimum bid price (reserve) and a minimum bid-up increment of between 50 cents and 3 dollars.

Please do not bid unless you are serious about purchasing the item.

Winning/Purchasing:

At the close of the auction, winning bidders will be contacted and will be able to pay for their items by check, money order or PayPal to Sarah's family under her mother's name, Michele Lewis Pulaski.

You will be contacted within 24 hours of the auction's close if you are a winner of an item or service. Winners will have 48 hours from that contact to respond, letting us know your payment plans (check, money order or PayPal and date you plan to pay). If 48 hours go by without a response, after that time, second place bidders will be contacted and the item will be offered to the second place bidder.

Once a paying winner is determined, Michele or a designated assistant will contact the donor to let the individual or organization contributing to the auction know the address of the final winner.

Getting your Item:

Your item will be mailed to you by the donor individual or organization after your payment has been received. The donor of the item assumes responsibility for shipping costs (this is in order to keep things as uncomplicated as possible) unless otherwise noted. What we mean by this: For this auction, donors are able to assign a fair shipping fee *or* include shipping as a part of their donation. Therefore, there may be a flat fee for shipping noted in an item's description. Please check for this before bidding. Any declared flat fees for shipping are paid back to the donor/mailer of the item after the shipment has been made. This is in order to show our appreciation to donors who are freely giving of things that may be costly to ship-- thanks for all that each of you do!

For more information, please contact us!

2009-09-30T15:05:00.004-04:00

All About Sarah

by Sarah's Mom

Hi there! My name's Michele and I am Sarah's Mom. I am also mother to her two wonderful siblings -- Sarah’s twin brother, Joshua, and her younger, 9-month old sister, Emma. In addition to Sarah's challenges due to her brain injury as a newborn, my husband also battles a form of muscular dystrophy. As a family, we have had our abilities and resources tested, it's true (the "tattoos" of life), but we also share a lot of love and a lot of laughter. More than anything, I am grateful for my wonderful family, whose story is also Sarah Bear's. With lots of support from relatives and friends, we strive every day to make our children’s lives joyous ones, filled with opportunities, and wonderful memories.

Meet Sarah Bear

by Sarah Bear's Mom

Sarah was born a beautiful, and healthy baby on March 6th, 2007, along with her fraternal twin, her "big" brother (older only by one minute). Then, a little over a month later, on April 16, 2007, Sarah became very ill and we didn't know what was wrong. We rushed her to the hospital only to learn she had a life threatning case of meningitis due to a late on-set Group B Strep infection (GBS). Sarah's brain was swelling, but we hoped and prayed for a miracle that she would not be affected from this deadly infection. Unfortunately, Sarah's brain scan revealed a profound loss of brain tissue and her medical team predicted she would be at the level of a newborn for the rest of her life, if she even survived.

BUT!!!... (we like this part, hence the exclamation points)...

Photo and video editing at www.OneTrueMedia.com

Not only did Sarah survive, she is doing far better (lots more!) than her doctors ever predicted, despite living and growing up with a seizure disorder, cerebral palsy, sensory integration disorder, developmental delays, and vision loss. In fact, this vivacious, little toddler girl is learning both to sit and stand up, gives sweet kisses (the best!), and even says a few words and hums various songs. We believe all of this is due to intensive early intervention and the love and encouragement of family and friends. For this, we are very thankful. Please help Sarah reach her full potential!

Donations:

Within the next two years (2009-2011), we hope to meet our goal of raising $25,000 - $35,000 in order to fund three different treatments/therapies for Sarah that we believe will help her reach her fullest potential. Time is critical because most children make their greatest gains within the first three to five years of life. Unfortunately, health insurance does not recognize or cover any of these therapies from which Sarah, who is now two and a half years old, could benefit. They include:

$5,000 per round of HBOT treatments - Hyberbaric Oxygen Therapy
$6,000 for a 3-week program - Therasuit Intensive Therapy
$25,000 for a round of stem cell therapy^*

^*Currently available only in Europe, China, and elsewhere outside the US

Let's Hear From You!

2009-09-30T13:46:00.002-04:00

Welcome! And thank you for visiting us and taking time out of a busy day to send us your comments, questions, suggestions or heartfelt thoughts using the form below. Whether your interest is to exchange information about what resources and support services are available for children like Sarah, or just cheer her on -- or maybe, even, to sponsor a fundraising event for her -- your generosity is appreciated. There is power in community!

THERE'S NO COST, NO RISK and NO OBLIGATION.

Your privacy is important to us. Sarah Bear's Story WILL NOT rent, sell or exchange your information with anyone. Ever.

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