Created and maintained by Global Hydranencephaly Foundation, a nonprofit organization whose efforts have the potential to change the lives of thousands of families across the globe; many already involved with the cause. The foundation will be guided by individual family needs as it grows. The ultimate goal is not to cure, simply to ensure these little lives are allowed to shine through education & awareness campaigns.
Wednesday, June 5, 2013
Tuesday, June 4, 2013
Ok, so it's not official... however, we are not the kind of organization to back down from adversity or obstacles. Afterall, our little bees just wouldn't allow it!
100,000 signatures to obtain in a timeframe of a mere 30-days in order to petition the Obama administration is a large order. Our hope of making the plea an official motion has not fizzled out, but the goal is a long stretch for a special needs community representing only one in 100,000 births worldwide, and only 250,000 in the United States. Thus, a new plan of attack is in order!
However, as we plan this new method of approach in making this a formal declaration, we will honor the month of June as hydranencephaly awareness month UN-officially. Starting this year, 2013, we will continue to honor the entire month of June as awareness month for hydranencephaly.
Our parent organization, Brayden Alexander Global Foundation for Hydranencephaly, was formally incorporated on June 14, 2011. The reason June was the goal for incorporation was that the inspiration behind the project, Brayden Alexander Harper, was born on June 30, 2008. His little life was the fuel that turned this dream in to a reality and a way to keep his little light shining long after he has left this earth. The organization is a way to bring reality to the face of hydranencephaly, despite the medically subjected impossibilities that are portrayed in the professional community.
We hope you will join us in recognizing the efforts of our foundation and the passion of our families by learning more about hydranencephaly and sharing the information we provide here, via our YouTube channel, on both or our websites, and via our Facebook page and Twitter feeds. Links to all are listed below:
Tuesday, May 21, 2013
(Note that this is not a sponsored review, simply a post to share an item one of the members of our family support group has discovered to work well. The information provided here has been collected from various information sites around the web and is not intended as a promotion of this particular product by GHF.)
Not all "toys" for our medically complex kids are necessarily toys as you would expect to see upon mention of the word... but they're a necessary part of their lives and a invaluable piece of the complex puzzle parents find themselves piecing together while discovering the best ways to provide the best quality of life for their child.
|Miss Savanna's New Toy: Masimo iSPO2 pulse oximeter|
So, what IS a pulse oximeter? I'm sure you or your child has been ill, especially in respiratory distress situations, and had this little plastic clip
or even this bandaid-type sticker
placed on your finger, earlobe, or toe. That clip is a needle-free way to measure your blood's hemoglobin, the protein in red blood cells that works to transport oxygen from your lungs to all other tissues of your body, to present you with a reading known as your blood/oxygen saturations (O2sats, SaO2, or simply SATS in the special needs community). It glows red because a beam of light is being directed through your skin to calculate the flow rate of your oxygenated blood. The accuracy is most genearlly 2% above or below the results you would get from a much more painful procedure called an arterial blood gas (ABG) measurement via needle in the artery. Darker skin colors, poor circulation, or cold-to-the-touch skin may skew the accuracy to a degree.
Why is a pulse oximeter a piece of equipment necessary for my child? Many children with hydranencephaly, as well as other complex medical conditions, also have varying degrees of lung disease or system dysfunction which will cause your blood oxygen levels to be lower than normal. When this level is low, your cells have a hard time functioning efficiently and can cause unnecessary strain on the rest of your body... especially your brain and your heart. Low levels for short periods of time are not the concern, it's actually fairly common in certain situations... like crying fits, illness, strenuous exercise, etc. Should those levels stay low more often than not, the need for supplemental oxygen becomes an addition concern. Being able to record trends in dropped levels allows parents and physicians to determine when a child may need to supplement with oxygen, this is often of greater concern during sleep.
To demonstrate this specific device upon its unveiling in January 2013 at the Consumer Electronics Show, Mike Drummond from Masimo connected the pulse oximeter to the finger of Stig Avall Severinsen, the creator of Breatheology and world-record champion of the longest underwater breath hold (with a whopping 22 minutes!!). info and video obtained from Scott Jung at MedGadget:
Of course there are also a whole host of stand-alone models available for purchase in a variety of price categories, but this is compact and the first of its kind to be compatible with all iOS devices.... and the iSPO2 pulse oximeter app is available in Apple's app store for FREE. And it just so happens that Masimo, the brand that presents this amazing new technology, possesses the patented technology that accurately measures oxygenation while in motion... rather than only at rest as most oximeters, making it GREAT for little ones on the go!
The app makes getting a reading simple and straight-forward.
Just as with stand-alone models, the uppermost reading shows your oxygen saturation (SATS); below that, your pulse rate in beats per minute (BPM). The app also gives your perfusion index (PI), which is a measurement of your pulse strength, on the bottom of the main screen as well as in a waveform graph on another screen. For reporting purposes, you can log history and easily email as a spreadsheet to doctors when a concern arises.
You can easily obtain a much cheaper model of pulse oximeter, generally in the range of $20 and up, from most medical supply companies, eBay, and amazon. After reading reviews and doing further research, this option is only hindered by it's price: $249, plus the extra $30 if you need the adaptor for iPhone 5. But you can weigh the pros to that price tag and decide for yourself if it is the best option for you. If it is, get it here:
Masimo ISPO2-3587 Ispo2 Pulse Oximeter on Amazon.com
iPhone 5 Lightning to 30-pin Adaptor at Apple Store
And the Masimo iSPO2 program app is available for FREE from the Apple App Store.