Wednesday, October 05, 2011

First, thank you all for your concern. Over the past week, I've received quite a few emails and then some comments inquiring about us. I am sorry for the long delay between postings and a bit embarrassed that I created such concern.


Overall, Dear Son is doing o.k. That being said, it hasn't been particularly easy these past few weeks. Dear Son began having a lot of seizures about three weeks or so ago. He began having multiple seizures a day, with one or two a day, getting quite long anywhere from 10-25 minutes. I kept thinking they would get better and finally called the doctor. Hindsight is always 20/20 in these cases because when I am so tired, it's more difficult to realize that things are out of control until things settle down and I get more sleep. Then I look back and realize how challenging it was for him. The doctor increased one of his medications however right after that, Dear Son had a terrible seizure and I nearly had to call 911. Fortunately, I was able to get it under control with some Diastat (it's a rectal valium for seizures) and then it was shortly after that, another day or so when the increased medication dose took effect and help stopped the many of the seizures. Most days, it got better, but we still had a few days of issues and then he began sleeping entire days and nights. I called the doctor again and he removed all of the increased medication and made another change on Monday.


While this was going on, it has become increasingly hard to move Dear Son. While he can sit up, I still need to roll him over at night which involves a fair amount of effort. I have to lift his hips, then lift his upper body to position him plus position his arms and hands. To be quite honest, I am exhausted. He is well over six feet tall and 200 pounds so he is a big man. It's hard to tell that he is so tall because he doesn't stand however his legs are long, his torso is long and he's got a pretty large amount of muscle for a kid that is unable to walk/stand. It is hard work and I am physically wiped out. I don't like to say anything because I love my Dear Son but he is one handsome, tall, big man, lol but I am probably getting closer to the point where I am going to need additional help now and then to care for him.


The increased seizures meant I was up a lot at night, as in sometimes 10-15 times a night between 1 a.m. and 5 a.m. so that made things tiring hence, no posts. In addition, my Mom is in a nursing home and has had multiple set backs. In February, she went into a nursing home with plantar fasciitis and then became sick. She was horribly sick for a while and then had a difficult time with recovery. During this time, I believe she had a stroke although they did not confirm this. Later in the summer, she had some psych testing done and they confirmed that she has mild dementia (vascular dementia). I've been trying to visit her when Dear Son goes to school so this has taken up some of my free time, which hasn't been much. She has had some additional issues but I won't go into that here.


Most recently, I have been working hard to treat some breathing issues Dear Son is having. He began having some issues on Monday and I treated him with additional coconut oil in the morning and then went to work. I was up at 12:45 a.m. with him and then again at 3:45 a..m. this morning to get his feeding started. When I realized his oxygen saturation was really low (in the 80s), I needed to do a breathing treatment right away and started that at 3:50 a.m. I also gave him some organic coconut oil. I was able to get his oxygen up to 92 and then gave him a second treatment at 6 a.m. before school. He was happy by 6:30 and was able to go to school, have a good day and came home. The nurse at school confirmed that his lungs sounds were clear although she could hear congestion in his upper chest. Everything seemed o.k. until 1 a.m. so I am currently doing another nebulizer treatment to help his breathe a little easier tonight. I'll get to bed when this is done and then get up at 3:45 a.m. to start his g tube feeding before school.


Regarding the organic, virgin coconut oil, I've said quite a few times how well this stuff works for Dear Son. On September 13th, we celebrated one year with no hospitalizations for pneumonia. Prior to using the Now Organic Virgin Coconut Oil, he was hospitalized two to three times a year for pneumonia. Yay Dear Son! About two weeks ago however, the editor (CEO) of a major coconut oil brand, stole my blog content and added it to his website claiming that (his brand) the organic, virgin coconut oil cured paralysis in Dear Son! I happened to find this when I googled for something else. I contacted the editor which turned out to be the CEO of a major coconut oil brand and told him to remove all content, that it was copyright protected and that he had no right to add a sensational and false headline to my content and then print the content with my name on it!!!!!!!!!!!!!!!!!!! The original title of my blog post was something like, "Office Visit Update" and then he wrote a new headline on how the coconut oil cured paralysis in Dear Son and followed it up with my entire blog post and photos of Dear Son! I sent him a terse email and told him to remove the content immediately and also informed him that Dear Son was NEVER paralyzed. He was quite unprofessional about the entire matter. It bothered me that someone would just blatently steal my content and when I told him to remove the content and he told me I should ask him nice. I reminded him that he stole the content. Anyway, so that is why I mention the brand Now Foods with the organic, virgin coconut oil. That is a great brand and the only one that we use. You have to watch out for some of these other unscrupulous companies that will steal content to sell product. Shame on them.



Enough with his medical news, now on to the fun stuff. Halloween is right around the corner and I hopefully will be doing a grand costume for Dear Son. This is probably the most elaborate costume I have ever done and providing things go well, it will be his best costume ever or I won't do it at all. Sketches are complete and the list of things I need for construction is done. I hope to start construction in the next week or so. I have to order a wig for Dear Son and hopefully he'll wear it. On the other hand, I have a few clues for you:



  • It involves music.

  • There is a lot of sparkle and glitter involved (Yes, that part scares Dad and I too!)

  • There will be a wig.

  • This costume is not on any Halloween website nor is there a wig for this character on any Halloween website.

  • I chose this costume because this character is sitting down and I thought it would be great in incorporate the wheelchair into the costume.

I'll try to get a little bit better about posting. I haven't had a full night's sleep in nearly three weeks but Dear Son's Dad will take him this weekend so once I get caught up a bit, I should be good. On another note, I am considering converting Dear Sonn over from a commercial formula to making all of his g tube feedings myself. I just started researching it and know I'll need a commercial blender for this but if anyone has any suggestions or has done this, I would be interested in hearing about it. I am going to make an appointment with a nutritionist over the next month or so to begin some discussions. In the meantime, I found a Yahoo group dedicated to those who make their own tube feedings. I also have found a few websites touching on this but none that I am enamored with.


Thank you all again for your concern. It was quite touching.

6 comments:

Dream Mom said...

Anon-I deleted your comment because you were very hot and I wanted it to be a surprise! Great guess!

Mary said...

I am Very, Very sure it will be your finest work yet--Dream Mom--You are the Very Best Mom in the whole world to the Very Best Son. Hugs to you both!! Thanks for the update!!
Congratulations on a whole year sans the hospital!!
You are an awesome caregiver!!
And I bet your place smells all like a tropical paradise with all that coconut oil!!
Sounds like it is really helping Dear Son.
Hope you get a good rest this weekend.

Dream Mom said...

Cindy-You are correct! I deleted your comment too so it would be a surprise! Between you and the first Anon, I guess my clues were too good! Thank you both for your great guesses!

Kathryn T. said...

If the crooked CEO still won't remove the content, you can initiate what's known as a DMCA takedown. You can find instructions here. That will force his ISP to remove the content for him or pull the plug on his website entirely!

Dream Mom said...

Thanks, Kathryn. I sent him a stern email to remove the content and reminded him that he was not authorized to copy it and more importantly, by changing the title and linking it to my work, it slandered my name (he claimed I said the coconut oil reversed paralysis in my son, of course, I never said that and Dear Son was never paralyzed nor did we ever use the tropical coconut oil). Worse, he sent me an email telling him I should "ask nice"...I reminded him he stole the content kind of like someone stealing your car and asking you to ask nice to get it back.

As a precaution, I also went back and made sure that all of my posts discussing the organic coconut oil referenced the only brand that we use which is Now Foods Organic Virgin Coconut Oil which we buy at GNC (mostly) or Whole Foods. They are a legitimate brand and don't have to resort to stealing to sell their products. That should prevent any more content stealing by unscrupulous coconut oil sellers.

Thanks for the link. It's great to have that information.

clairesmum said...

glad to hear an update. your days are never empty or boring, are they?!
having some help in Dear Son's care would be a relief, and hopefully also give you a second set of eyes to evaluate if symptoms are improving or not - the haze of fatigue makes it hard to see accurately, as you know. take good care of YOU, dream mom!!!

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