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I would be grateful beyond words to meet with you Dave for friendship and your consideration of our big guy.
When our son was five weeks old our family doctor diagnosed his labored breathing as colic. In fact he had pneumonia. He stopped breathing two hours later. We were living in Homer, Alaska. EMT's resuscitated after 47 minutes yet the Children's Hospital in Anchorage refused to Lifeflight. After 9 and a half hours our respiratory therapist went against the intensivist on duty in Anchorage calling in favors having our son flown up. (The intensivist was livid). We spent the first eight weeks of the 13 weeks we were in ICU, everyday being yelled at by her claiming we did not know what we did. She described how he would be in misery his entire life. Our guy recovered miraculously. Two months later he was shunted dwelling to his lung, epic failure. We left Alaska for Oregon for better neuro care.We were distracted seeking neuro by an esophageal hernia caused by a fundoplication. Long story but the outcome of two battling surgeons (One practicing open surgery, the other laparoscopic) was a fight during our son's surgery between the two which left our son under the care of a skittish resident while the two fought. The resident created three punctures to our son's esophagus. Everything that went through our boy's mouth went into his chest. Error after error, nine months later the holes closed but he lost all ability to speak, eat by mouth, the external J.P. drain made meaningful physical therapy impossible.
We could not get him seen by a neurosurgeon until he was no longer duressed by the hernia injury. By the time we could, we discovered the shunt placed in Alaska was not calibrated properly. Our son's third and lateral ventricles were completely fluid fill. His brain matter deteriorated. As had his functions. Verbal speech gone, sitting upright, he cannot walk or use his hands. We began a search for a medical community who specialized in brain injury. Everywhere from Seattle to Denver, D.C., Virginia, Florida we found personality conflicts causing procedural mistakes. Our neurosurgeon, Monica Wehby, in Oregon is brilliant. We reduced our son's exposure to just her. This past year has been his healthiest, happiest. Since his shunt seems not to be needed (Monica has stated removing would be more dangerous than leaving it in), we came to Hawaii.
The simplicity of having him in the ocean has already generated him kicking independently in the water. His none processed diet already shows improved attentiveness. He was already remarkable for all he has been through. Hope for him enjoying his life has always remained supreme. Witnessing his new abilities, extraordinary moments.
I love Waimea!!!! We drove through a couple days ago on Saddle Ranch when the horses began dashing across the pasture. There was nearly a five car pile up behind us. Someone stopped apparently, suddenly to watch. When you drive around 4PM through the fog, the ranches have an errie haunting atmosphere....awesome.
We are almost certain we are going to buy in Kopua Farm Lots. The elevation, rain, temp. is perfect to grow about everything. Waimea is a bit cooler. Acreage more. Kopua right now we could buy a 20 acre parcel for $65,000 cash. My husbands all ready planning the garden. I still want to wait a few more months. Stay in civilization, lol.
We bought bikes from Chris at the Bike Hub in Hilo. He is really fluent in Hawaiian. He was having an animated conversation with some local guys when we were in. We have found an eccentric group of good fellows who hang out at Mr. Ed's bakery in Honomu. Whenever they want to say something not for a ladies ear they switch from English to Hawaiian too. They must speak older Hawaiian. I think Chris was speaking more slang.
We used up some Hilton Points at Waikoloa Village last weekend. The sunset from their golf course is insane. Have you been?
Where were you before you returned to the Big Island? I must visit the tea plantation while we have the rental car. The guy who sells honey at the Hilo farmers market also had tea bags Saturday of lemon grass. He was asking six dollars for a handful. Is that price reasonable? At Sun and Sea in Hilo, we bought snorkel sets. Lawrie, one of the owners mentioned the Captain Cook momument was closed to kayaking due to a controversy over sport shops & locals renting kayaks. Supposedly to break kayaking is banned. Do you know if that is true or if the ban is lifted?
Oh too many questions above. Sorry. If you can answer any of them I thank you in advance.
OpenD My husband works in Alaska three weeks at a time. He returns for three weeks off. I had to count him down to island time this hitch back. Alaska is a pretty simple transition. I can understand how those who relocate from populated, active lives, like Trixie take time to figure out how to live without constant haste, pressure, commitment. In Trixie's family they are lucky to not be dependent on Hawaii economy for income and have children old enough to be self sufficent.
I feel for families who visit who rush around trying to experience Hawaii never taking a moment to honestly relax. Here on the scenic stretch of road every car about has someone video recording instead of enjoying the view. Understandably most are on a time budget. I feel blessed to be able to linger.
I would be grateful beyond words to meet with you Dave for friendship and your consideration of our big guy.
I will be back in my office around the first week of July. I may be in Honolulu for a conference that week, but at latest, it will be the second week of July. I would be more than happy to see your guy pro-bono (no charge) for some assessments (cognitive, neurological, speech, language, feeding, swallowing, movement). I am licensed to do home health visits, so I would be more than happy to bring my gear out (it's packed in the company car already!), or you may meet me at my office. Either way, we can continue speaking about this via PM. For what it's worth, I contract with Easter Seals Hawai'i, which is a huge non-profit, charitable organization that works with children between birth and 5 - I have a special place in my pu'uwai for na keiki
Quote:
Originally Posted by KimberlyReutov
We are almost certain we are going to buy in Kopua Farm Lots. The elevation, rain, temp. is perfect to grow about everything. Waimea is a bit cooler. Acreage more. Kopua right now we could buy a 20 acre parcel for $65,000 cash.
I too am looking at my long-term home in Waimea, and there are still some amazing lots for sale. Many have hook-ups ready to go, though it's just as easy to do it yourself. My father and I are building some affordable rental homes in Waimea and Hilo, as, now that I am back, I am noticing a severe lack of nice, affordable homes. It is a love of ours (we have some rental cabins in AK as well), and can't wait to start in Waimea. The fun thing about Waimea is how much the climate can change in such a short distance. Again, a great reason many of us recommended this to the OP.
Quote:
Originally Posted by KimberlyReutov
We bought bikes from Chris at the Bike Hub in Hilo. He is really fluent in Hawaiian.
It's one of the main reasons I am moving back to BI - I've done some work with Ka Punana Leo and am putting together the first speech/language assessment in Hawaiian. We cannot just assess/diagnose every child in English, especially here. My first Master's is in Linguistics, and I was fortunate enough to do much of my thesis work in Hawai'i. I know there are many Hawaiian speakers here, and the amount of keiki speaking is growing (slowly) with each generation. And I'm not just talking about the Kam schools!
Quote:
Originally Posted by KimberlyReutov
Where were you before you returned to the Big Island? I must visit the tea plantation while we have the rental car. The guy who sells honey at the Hilo farmers market also had tea bags Saturday of lemon grass. He was asking six dollars for a handful. Is that price reasonable? At Sun and Sea in Hilo, we bought snorkel sets.
$6 for a handful ain't bad, mostly because the ingredients are all grown about 30 minutes from your backdoor, in paradise haha! Definitely visit the tea plantation. If I'm not mistaken (and I probably am), there used to be a winery right up the way. I'm sure the varietals are still grown there, it's just I haven't been in years! As for your other question, before coming back, I did a dual master's degree at Idaho State University and University of Florida. I've been living in those places (with my home in Fairbanks, Alaska) for quite a while. Been planning a return ever since, and the jobs in my field are great on the BI, so I chose to come back. We get a 'rural health' monthly bonus working in HI, which definitely sweetened the deal for me
Quote:
Originally Posted by KimberlyReutov
Lawrie, one of the owners mentioned the Captain Cook momument was closed to kayaking due to a controversy over sport shops & locals renting kayaks. Supposedly to break kayaking is banned. Do you know if that is true or if the ban is lifted?
Ah the kayak ban. If I'm not mistaken, was supposed to be lifted in like March or April, but they're still 'looking into it'. Konaboys have a good write-up on it. Many people were angry that they were still allowing motor vehicle access to the bay, which confused me because the problem was never the motor vehicles, more the unlicensed renting of kayaks. Again, I notice people will get up in arms over anything (just my opinion). There was a partial lifting of the ban, and now certain guides can bring you in on kayaks. Anyone can swim or snorkel, just not landings at Kaawaloa I think. The DNR is looking at instituting a day-use permit for anyone landing at Napo'opo'o and Kaawaloa (or possibly even just kayaking/SUP/boarding the bay). Here's their website with contact info: http://www.hawaiistateparks.org/park...cfm?park_id=46
Quote:
Originally Posted by KimberlyReutov
Oh too many questions above. Sorry. If you can answer any of them I thank you in advance.
I think it's perfectly reasonable, in a thread about MOVING to HI, that others can bring up topics like this which are SO appropriate to living here. Im sure if nothing else, Trixie is able to see the circuitous ways that life must occur in here. What better view on life in the BI could she ask for?
I would be more than happy to see your guy pro-bono (no charge) for some assessments (cognitive, neurological, speech, language, feeding, swallowing, movement). I am licensed to do home health visits, so I would be more than happy to bring my gear out (it's packed in the company car already!), or you may meet me at my office.
I have a special place in my pu'uwai for na keiki
...and the above is a perfect example of 'living aloha' - so many thoughtful posts and good information in this thread.
Thanks for the very useful information on your experience on the BI. One can do hours of research from the mainland but I can only imagine how clear things get on likes/dislikes when you have a couple weeks to suss out things. I agree with you on the value of fresh coconuts as this alone can really wreak havoc on a family budget. I love how you offer local kids twenty dollars for a vine of coconuts - what a fun way to earn some spending money!
My heart goes out to you and your family concerning the early years of medical chaos following your son's pneumonia. We had a couple of days in the N.I.C.U after I had a uterine rupture with our second son and also had to deal with the politics of doctors with differing opinions. The stress was like nothing I had ever experience and it was only 48 hours. What you and your family went through must have been unbelievably stressful given the sheer amount of time spent in that very stressful world. To this day I remember our wonderful N.I.C.U nurse Maureen and how she quietly assured me that our son was going to be just fine as two different doctors debated this outcome. Thanks God her assessment was correct but the power play of the Drs in charge was sooo stressful at the time.
I have heard that the ocean does wonders for children with sensory issues in Autism - I know your son's issues are not the same as one with Autism but here is hoping marked improvement for your little one as he enjoys his new home. And what good fortune at connecting up with RugbyDave on this forum - I doubt you ever imagined having a well trained specialist right on BI.
As far as the unprocessed diet goes, I have seen tremendous improvement in my own life since kicking dairy and red meat from my own. My husband still eats beef but he is a Texan so encouraging him to give it up is taking some time. I have noticed things like no more migraines, better sleep and increased concentration. I am thinking that we will have a truly great diet there as we do pretty well here without the daily farmers market and fresh coconuts. I saw a video of a father in Costa Rica and he simply chopped off the outer shell, popped in a straw and handed the whole coconut to his toddler for a morning snack.
As far as figuring out where we might settle in the end, VRBO homes can be arranged throughout the BI so we will make it a point to try out the many different areas upon visiting in November. Thanks so much for the kind offer to help us settle in after we arrive. After reading of how your husband commutes out of area for work and the increased needs of your little boy, the offer to help shows extraordinarily kindness on your behalf.
P.M.. Trixie once you arrive you must try Noni. It'll test you. The fruit is simply nasty. The health benefits are supposedly miraculous. Something you can try now is Klamath Blue Green Algae . We use Power Organics. Stay far away from the Cal Tech brand.
Thanks so much for the Mommy compliment - I hold nothing more precious than my kids and the time I have with them. I was just thinking the same of you last night - the hardships in life not only strengthen us but makes us more mindful of what really matters. I am sure you love being in Hawaii, but it is also evident that you chose the place so that your little boy can thrive - now that is what I call a great mommy!
We are looking at a November trip at this point and I will look into the beach home you mention as it sounds great. So many have warned us about the difficulty in finding a long term rental with animals. Willowkim has a friend that arrived with a dog assuming it would be ok as prospective landlords would see how well behaved her pet was. Despite this logic, she still had a terrible time going about finding a place. Did you by chance arrive with pets?
My youngest daughter is six and is incredibly attached to her two kittens. We are taking a trip out to Bozeman on Sunday and she is clearly not thrilled about leaving them behind.
As far as the Klamath Blue Green Algae, I will see if we can pick some up in Bozeman as they have a great co op there. Have you removed gluten from your son's diet? Children sensitive to gluten have described the sensation of having the sounds of a hair dryer or fan in their head while on it. Do you remember Jenny McCarthy's son and how she blamed vaccinations for her son's autism - well he had a full turn around in speech and behavior once she took him off dairy and gluten. My youngest son had a similar experience in that he rarely spoke at four but when we removed gluten completely from his diet he seemed more vibrant.
I know by your posts you are open to anything that might bring improvement to your son's quality of life so I thought I would suggest you look around at the research regarding gluten. There is a a brilliant researcher on gluten issues, Dr. Alessio Fasano, and he was explaining how the neurotransmitters essentially do not communicate well between the gut and the brain when gluten is an issue. Everyone knows that stomach issues result from gluten intolerance but few realize the havoc unleashed on the cognitive end.
Well I must go and pack. Have a great weekend and thanks again for your kindness!
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