Office Visit Update!

My apologies for the long delay between postings! Dear Son has been doing amazingly well over these past few weeks. As I mentioned previously, I started Dear Son on Now Foods Organic, Virgin Coconut Oil in mid/late October to help prevent colds/flu/pneumonia and also to give him energy. Within four weeks of starting the coconut oil (1 tsp/day), Dear Son was no longer sleeping when he was at school. As you may recall, he was only able to attend school two mornings a week since his severe illness in 2009. He had been sleeping and needed to rest at school. Now, he his happy and fully engaged at school. When he arrives at school, everyone asks if he's in the building and if he's there, lol. Of course, he loves the hoopla surrounding his arrival. He especially likes it when they cook at school, even though he can't eat.

Essentially, what they do is they select a recipe, gather all of the kids around the table and then go through the ingredient list, add the ingredients, letting the students help as they go. Dear Son likes it when they make anything with flour in it, since he loves it when they toss it a bit and things get a little messy.

With eight weeks of starting the organic, virgin coconut oil, Dear Son began to move his legs and feet. He started trying to kick the Christmas tree a little bit before Christmas. After his hospitalization and being on the ventilator with the H1N1 in 2009, he was not able to move his legs, his feet or even a toe. It was as if he was paralyzed since there wasn't any movement at all. Now he can use both feet. He can use his feet to turn the recliner around, he can lift his feet off the floor as in trying to kick something and he can use his feet to rock himself in the recliner.

Within 12 weeks of starting the organic, virgin coconut oil, he was back to his old self. He could hold his head up again. If you remember, in nearly every picture from his Make a Wish trip and even thereafter, his head was always hanging down. He wasn't able to hold it up. Now he can sit up straight in his wheelchair and hold his head up. He laughs a lot more and likes to play again. He vocalizes more and is more affectionate. He is able to move his arm better so I can wrap it around my neck and he can give me a hug. He can squeeze his arm enough for a hug. The best part is that he is able to enjoy life again. I came into his room the other day to get him up. He had been sleeping a while and when he heard me, he had this huge smile on his face with his eyes still closed. I came up to him and started rubbing his arm and back asking him if he was ready to get up and he opened his eyes and was smiling.

When we took him for labs last week at Big Academic Medical Center, he was able to sit up straight in his wheelchair, hold his head up tall, look around and even made eye contact and smiled at me from about 30 feet away! It was wonderful to see! He's been growing too. I think he grew another inch or so in the past month. His torso no longer fits on the length of the bed pads so I am guessing Dear Son is really getting up there now. I am estimating he may be around 6'2" or even 6'3" tall. His teacher thinks that is a pretty good estimate as well.

Recently, I read an article which may explain in part why the organic, virgin coconut oil is working so well. I am not implying that it has cured Dear Son of his progressive disease in any way, but rather, it is an excellent tool in keeping Dear Son healthy and keeping respiratory illnesses away. Dear Son can't cough or clear his airways so respiratory diseases for him are life threatening . They have told me he will die of pneumonia. By using the coconut oil, along with using his nebulizer once a day and general good care, he is staying well. He has not had one cold, one infection of any kind. Any time he sneezes or sounds like he is wheezing, I give him a tablespoon of coconut oil. I mentioned previously how I used it for him when I talked about how we were staying well this winter with one of those items being the organic, virgin coconut oil.

In this article, a physician, Dr. Mary Newport, Medical Director of the Neonatal ICU in Spring Hill Regional Hospital in Florida, had a husband suffering from Alzheimer's disease. When the traditional Alzheimer's medicines failed to help him, she began to research the mechanisms behind Alzheimer's. Essentially what she learned was that with Alzheimer's disease, the brain's principal source of energy is impaired (brain cells utilize glucose made from the carbs we eat) and without fuel, these begin to die. The alternative energy source, or ketones, can be produced by the body naturally, when it's deprived of carbs. She discovered that the alternative way to produce ketones is by consuming oils that have medium chain triglycerides (MCT). Coconut oil has MCT and when the oil is digested, it's converted into ketones via the liver. She then went on and learned the following:

"that the ingredient in the drug trial which was showing so much promise was simply MCT oil derived from coconut oil or palm kernel oil, and that a dose of 20 grams (about 20 ml or 4 teaspoons) was used to produce these results. When MCT oil is metabolized, the ketones which the body creates may, according to the latest research, not only protect against the incidence of Alzheimer’s, but may actually reverse it. Moreover, this is also a potential treatment for Parkinson’s disease, Huntington’s disease, multiple sclerosis and amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), drug-resistant epilepsy, brittle type I diabetes, and type II (insulin-resistant) diabetes."

This may explain why coconut oil is helping Dear Son. Now I am using a very small dose with him, only 1 tsp. per day plus extra when he symptomatic.

Aside from Dear Son feeling and looking better, I should mention that he still struggles with seizures (I am not implying in any way that I used coconut oil for seizures, just to be clear.) I talked to neurologist about this today however the labs looked good so we will keep his meds at the same level and continue to use his vagus nerve stimulator as needed.

But the best news of the day was that the doctor is allowing Dear Son to attend school three mornings a week! I contacted Dear Son's teacher prior to our office visit to see how he was handling school and to get her opinion on whether or not she thought Dear Son could manage another morning at school or to see if she thought he should go longer on the days he went to school (meaning a full day). She thought another morning would work better for him.

In other news, I'll try to post a bit more frequently. I have been a bit torn over the blog lately. Essentially, I've been wanting to write about a few different things, organizing, cooking, homemaking, etc. versus blogging mostly about Dear Son. I've struggled changing topics a bit and with regards to organizing; I've been reluctant to write about that since that is my business and essentially my organizing tips are really my intellectual property so to share all of my organizing doesn't make sense from a business perspective. Regarding Dear Son, I've done some more writing and am thinking about seriously putting together a book. Some of the topics I am writing about fill up more than a post or two and would be more appropriate in a book. I am thinking instead about some e-books for topics related to organizing and organizing for special needs.

I have also been adding quite a few items to my Amazon store that is located here. Essentially, I've added a lot of gifts for special needs children as well as kitchen items and green cleaning items. It's still a work in progress and I'll be talking more about it as the weeks go on.

Coming soon though, will be my kitchen reveal. I've made some cosmetic changes to my kitchen and will be posting those in two to three weeks or so as well as talking about my philosophy about decorating and how what we eat and how we cook impact our health and are equally important when decorating and homemaking in general.

In the meantime, I'll probably try a few different post topics over these next few weeks. My biggest struggle is time since I only have two mornings a week to myself when he is at school and most of the time I am running errands. This past year has been the hardest for me, not only from the lack of sleep but from performing 24 hour a day care without much of a break. Thank you for being so patient and continuing to check in.

Just Sayin'...

Dear Son's 2011 Halloween wheelchair costume is done. Or rather, I have the costume and concept sketched out already. I won't put it all together until October.

It will be:

• Totally amazing. More amazing than the Tin Man I made. Although, that was pretty good.


• Knock your socks off. Yes, even better than the Jack in the Box costume I made.

• One of a kind. Way better than the chef costume, which I ahem, purchased. I think I get a few extra points for drawing on that cute moustashe though.


• Drop dead gorgeous. And I do mean, "gorgeous". As in eye catching. Even more eye catching than the Cat in the Hat.


• Unforgettable. Yes, even more unforgettable than the Bed Bug costume. And we all want to forget the bed bugs!
  
  

I am so excited about this I can't stand it. They don't even have this costume in any costume shop. I came up with the idea in mid-December. I had a few ideas prior to that of some cool costumes to make with his wheelchair; I could make them really cool too but this idea, is just plain "over the top".

The only challenge is finding the headpiece, not sure I can make that myself since I've never made "hair" but heck, I can probably make it if I can't find what I need like I did when he was a scarecrow.

Too bad Halloween is just once a year. I don't even decorate for Halloween, I just like making Dear Son's costume. Not sure what I'll do until then (tapping fingers on desk).

Note: Photo credit for pumpkins is Pottery Barn (I believe).

Things are Looking Up!

Dear Son is really doing well. To date, I've managed to keep him totally well during the pneumonia season. Next week will be five months since he's been in the hospital! Five months! I credit most of it to Now Foods Organic Virgin Coconut Oil since it really gets rid of any congestion and/or stops any respiratory virus right away. I increase the dose as soon as I hear any congestion, sneeze, cough, etc and it works! I've also been doing his nebulizer every day. As you are aware, keeping a normal person well is one thing but keeping a person who is chronically ill and immobile is a whole different ballgame.

A few weeks back he started moving his left toe and left foot again. Not often, but once in a while. He lost his ability to move his feet and legs after he was hospitalized and on a ventilator last November. I did months of therapy to try to help him regain his movement but nothing seemed to work. The doctors wrote it off to his progressive neurological disease and I didn't suspect things would change. Well, around Christmas time, things started to change. One day, he moved his foot a bit to rock the recliner and another day he lifted his entire left foot off the ground and tried to kick an ornament off the tree. He was so excited. He really enjoyed doing that or at least getting a reaction from me. I wasn't sure if I should jump for joy or tell him not to, lol. Well, he did it another day and then I took the tree down on December 27th so he proceeded to try his trick over at his Grandma's house. Then this week, he was able to move his feet enough to not only rock the recliner but to turn it all the way around. He turned it half way around to watch me cook in the kitchen (he loves cooking). Then he turned it around to look out the window. Then he tried kicking the living room drapes, lol. Anyway, he was doing quite well and starting to move his leg and foot a few days this week.

Today he went to school and did a great job. They sat him in a rocking chair and he rocked for 30 minutes. He listened to music and looked out the window. He was really happy. The teachers and aides at school all commented on how great he looked. Later, he helped cook hamburgers and joined in a lunch picnic (indoor) at school of burgers, chips and potato salad all made by the students in his classroom. Typically, they gather the students around the table for cooking and then talk through everything they are going to do. Sometimes, they'll have Dear Son help by doing hand over hand for stirring (he likes stirring) but most of the time, he just likes being part of it all. Of course, he likes when it gets a little messy, unlike his mother. It seems ironic that he would enjoy cooking so much since he eats via a gtube however he enjoyed cooking in class long before he went to gtube feedings.

So this is quite a wonderful turn of events. Overall, Dear Son has been very happy lately. He still sleeps a lot and has occasional seizures, but overall, he is regaining some strength and some movement in his legs/feet. I still do not see any movement of his right leg/foot but the left one is moving. That was always the leg/foot that he used for all movement.

The biggest issue over the last few months is still the large volume of work it takes on a daily basis to keep him healthy and functioning well, everything from nebulizer treatments, daily leg/foot massages, general grooming, meds every six hours, all tube feedings and moving him and keeping him aligned so he doesn't get any pressure sores. And while I certainly can't predict that he'll never be sick, I will consider it a huge accomplishment if I can keep him out of the hospital for any/all respiratory conditions. My 2011 New Year's Goal is to try to get him through 12 months without any respiratory hospitalizations. But to have him happy and doing well is the absolute best!

Living on the Edge with Disabled Children: When Health Issues Threaten the Family

It may not seem like a big deal, but to this family and others like him, this is a huge issue. Sam Parker is a severely disabled eight year old with cerebral palsy, seizures, on gtube feeds and is blind. He’s also a 75 pound quadriplegic and needs to be carried up to bed every night. When the father had heart surgery for a life threatening condition, the father could no longer carry the 75 pound boy up the stairs. At 75 pounds, the son was too heavy for the mother to carry. After the father’s heart surgery, a request was put out to the local high school and the captain of the high school football team volunteered to help the family out by carrying the boy up the stairs to bed at night. The boy spends his day on a cot outside the family kitchen and Rudy Favard, a high school student stops by three to five nights a week to carry Sam up the stairs. Rudy states that it’s not a “big deal” but to families like the Parkers, issues like this are a big deal and the fact that Rudy stops by to carry Sam up the stairs, enables their family to stay together.

This story however is one that is repeated all throughout the country. It’s no secret that when kids get too large for parents and caregivers to care for, often they are put into homes. While that may be a viable solution, it’s really sad to think that because you are disabled, you are at risk for this. Yes, there are certainly alternatives, such as a hoyer lift however that too takes a fair amount of muscle. I know moving Dear Son can be exhausting, especially when I am tired. And while I call Dear Son a child, he is in fact, a nineteen year old six foot plus man that weighs a little under 200 pounds. That can be hard to maneuver some days.

In 2007, I needed back surgery for some long standing back issues that had rendered me unable to walk more than 20 feet. I was in severe pain most of the time and unable to lie down to sleep. As it turns out, in addition to my longstanding back issues, I had also suffered three herniated disks from lifting my Dear Son. Back then, my 16 year old son was only 165 pounds or so and I was lifting him all day. In order to have my back surgery, I needed to put him into a home for two weeks, so they could take care of him. Luckily, I lived only a three blocks or so from the only respite/hospital care facility in the state for disabled children. They take only a few children at a time, say 10 or so, so I was lucky. It’s located in a large ranch home on a few acres and is about as close to utopia that you get for these children. Still, I worried going into the surgery about the “what ifs”…what if the surgery doesn’t work and I can’t take care of him. I was sick to death with worry. I visited Dear Son the day after my surgery, walking very slowly. Within a few days or so, I tried transitioning him from the wheelchair to the rocker, just days after my surgery. I wanted to make sure I could still do it; if I couldn’t I was afraid some agency would remove him from our house. It made recovery tough. I couldn’t pick up anything off the floor and yet in two weeks I needed to be able to lift his hips and turn him over at night, put the sling underneath his body and lift him up with the hoyer lift. Luckily, my surgery was a success and I can move him from point A to point B with the hoyer lift.

As the mother of a severely disabled child, it’s really wonderful to hear about such stories. Just recently, I received a newsletter with the results from my state regarding disabled children that are in need of services. What was most striking to me was the sheer number of disabled chldren who had caregivers that needed help or were at risk to go into a home because the family couldn't care for them any longer or the lone caregiver didn't want to care for them any longer (they didn't state why). Caring for children like Dear Son or Sam Parker is really hard. I worry every day that something may happen where I can no longer care for Dear Son so this story was really exciting to read. It is often hard to ask for help and what seems like a simple task to some, like for the football captain to carry the young child upstairs, is such a huge deal for families like the Parker's since it allows them to keep their family unit intact.

Thanks to people like Rudy Favard, kids like Sam Parker get to stay in their home and they get to make a good friend in the process.