Sunday, October 30, 2011

Facebook Halloween Costume Tutorial

Thank you for all of your comments regarding the cancellation of Dear Son’s Halloween party. I appreciate your support. I will be following up with the Special Education Co-op on this issue next week; my mother was critically ill in the hospital so I was unable to follow up prior to this. As a result, this week, I nixed the elaborate Halloween costume for Dear Son that I was sooooo excited about. It was by far, the most elaborate costume I would have made to date. I was so depressed over that decision; I know it sounds silly but I really do love making these costumes! I hope the decision over the Halloween party will be reversed for next Halloween and perhaps I can do it then.
Although the wheelchair costume was out, I still wanted to create a fun little costume for Halloween so I thought I’d create a costume that any teenager could wear. This costume is fun and so simple.

The beauty of this project is that it’s fairly quick and the foam pieces are the exact same size as the styrofoam piece which makes everything go really smoothly. Essentially, we are making a Facebook costume and the concept is to make the costume look like a book so when your face is inserted, people will put 2 + 2 together and go, “Oh, Face + Book = “Facebook!”.






Here is what you need:

Styrofoam piece
5 foam pieces-3 medium blue, 1 white and 1 light blue (If you can’t find a lighter blue, you can use a felt piece like I did.)
Glue-I used hot glue however a spray glue might work better.








I purchased the styrofoam piece and foam at Michael's.













Here are the steps:

1) Leave the plastic on the Styrofoam.
2) Take a piece of paper and draw a circle around your face.
3) Cut the circle out of the piece of paper and place it around your face to make sure the paper is slightly larger than your face so the Styrofoam piece will sit on your face. Take time to do this step or the costume will be wasted if you cut it wrong.





4) With the plastic still on the styrofoam, take the piece of paper and center it on the lower part of the styrofoam. You’ll want to leave around 2 inches or so on the bottom and just center it in the piece of styrofoam. Basically, what you want to do is to make sure that you have enough left on the bottom and the sides of the styrofoam so it doesn’t break when you cut it or put the costume on. As Norm Abram of, “This Old House” used to say, “Measure twice, cut once”. Thankfully, I learned something after watching 1.5 million episodes of, “This Old House”.
5) With the plastic in place, outline the shape of your face with a pen. You’ll mark this right on the plastic that covers the styrofoam.












6) Place the styrofoam piece on a bamboo cutting board. With the plastic still on, score the plastic/styrofoam with a knife, scissors or exacto knife. Because I am not a crafter, and got rid of any crafting supplies I had when I moved, I used a scissors, lol.
7) Once it’s scored, gently cut through the styrofoam with a knife. I found a knife with a serrated edge worked great for this part. You must take your time though or the styrofoam will break. Leaving the plastic on, helps control all of that styrofoam from getting everywhere; o.k. not totally, but it helps a bit.
8) Remove plastic and cut remainder of the styrofoam.
9) Remove the staples from the foam piece gently so you don’t make impression marks into the foam.
10) Once it’s cut, dust off the styrofoam and cutting board and lay the blue foam piece on the cutting board and place the styrofoam piece over it. I layed the foam piece with the staple holes at the bottom of the styrofoam. Trace the outline of the hole, then cut the foam.
11) Glue the foam on the styrofoam. I used a little bit of hot glue but I think spray glue would work better. With hot glue, you have to make sure you don’t use too much or you’ll melt the foam. Also, you have all of those hot glue strings to remove.
12) Repeat these steps with your other piece of blue foam. The front and back pieces are basically done.














13) Next, we are going to work on the sides of the book. Take a ruler and measure the side of the styrofoam. Take the last blue foam piece and mark the width of the styrofoam with a ruler. The beauty of this project is that the foam piece is the exact same size as the styrofoam so you only make one cut. Cut the foam piece the width of the styrofoam.
14) Before you glue it on, you’ll want to write the “author’s name” on the book. In this case, I used Mark Zuckerberg’s name. I place the last name first, followed by a comma, and then his first name. On the bottom, I made up some numbers, like they have on the library books.









15) Glue the blue piece on the side of the book.













16) Take the white foam pieces and use the same measurements you had for the width of the styrofoam and cut three pieces the length of the foam.




17) Draw lines in blue on the white pieces of foam. These lines are to make it look like they are the pages of a book. Don’t get too complicated here, keep it simple. Three or four lines will do. They don’t even have to be perfectly straight.





18) For the front of the costume, we now need to make the Facebook logo. I used a light blue felt piece but it was hard to cut. In retrospect, I’d use a foam piece instead. It would be much easier to cut and stand out better. I cut out a square on a piece of paper first to make sure I had the size I wanted. Then I place it on the costume to make sure the proportions were what I wanted. Then I placed the square on the felt and cut it.
19) For the letter “f”, I simply wrote it on a sheet of paper first, when I had the size I wanted, I traced it onto the white foam. When you place the “f” on the white foam, flip the “f” over so it’s backwards. That way, when you trace the “f”, your markings for the tracing will be on the back side of the letter “f” and won’t show when you glue it on the blue felt square.
20) Glue the letter “f” on the blue felt square.




21) Glue the blue felt square on the front of the styrofoam.


















22) For the back of the costume, I drew a “thumbs up hand” on a piece of paper. Once I liked the size, I traced it on the white foam. Again, turn the drawing over so when you trace the piece, the markings will appear on the “back” of the hand.
23) Glue the “thumbs up hand” on the board.






24) Next, cut a small square of blue felt for the cuff. I place a dot on the cuff but you could get fancy and use a rhinestone sticky piece or even a button. I had neither on hand, so I used a pen.
25) Take a piece of the blue foam (I used the cut out scrap from the face piece.) and place the “thumbs up hand” on it. Above it, write the word, “Like” above the hand.
26) Cut out a square around the “thumbs up hand” and the word, “Like”.
27) Glue the square on the back of the costume.








You are done!





Check out my handsome boy! Here are pics of the completed costume: front, side and back! (Whoops, the back of the costume with the "like" logo is at the top of the post!)


While we are not going out for Halloween, we did have a little fun taking pictures of his costume. It's not the ideal costume for a boy in a wheelchair however it was good to do something instead of doing nothing. Since we live in an apartment, we won't be going Trick or Treating. They did have some Trick or Treating near us on Friday however I am trying to keep Dear Son well and it didn't make much sense to take him out in the cold weather since he's medically fragile.






I hope you enjoyed his Facebook Halloween Costume! We'll be putting it out on Facebook too!

Note: Dear Son is nineteen years old and suffers from seizures, dytonia and severe developmental delay as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disorder.

Sunday, October 16, 2011

No Halloween Party Allowed at School! (Due to Religious Reasons)

I spent yesterday morning working on Dear Son's Halloween costume. As you may recall, I love making costumes for Dear Son and especially love making costumes using his wheelchair as a prop to bring these costumes from ordinary to "over the top". Last year I wrote this post on how to use the wheelchair to make costumes for kids with special needs and showed you all of his costumes from past years.
Last year, Dear Son was a bed bug and this year's costume was destined to be the best and most creative one I've ever done. I even posted about it in January.




Part of the joy of creating these costumes, is talking about them with Dear Son. Dear Son doesn't speak and let's face it, he can't move much so often times he's lying in bed or sitting in the chair and I talk excitedly about how much fun Halloween will be when he's in his costume and how much everyone is going to like it. He's loves a party and he loves being the center of attention. It doesn't matter if it's his birthday party or whatever, he loves it when I tell him everyone will sing, "Happy Birthday" to him or when I tell him everyone will say, "Great costume Dear Son". He just loves it. When you have a child like Dear Son, 90% of the exitement is the "anticipation" of doing something. Unlike other kids, who are able to get around and do more things on their own or even with their families, these kids can't do anything unless someone helps them. One of my main concerns about his "Make a Wish Trip" was whether we'd ever get there. We talked about it for 5 months and then he got the swine flu the day before we were supposed to leave and was on a ventilator. He was in the hosptial for a month and then it took another 6 months to recover. I worried we'd never get there.
Yesterday was no different. I started construction on the costume and spent the better part of the morning cutting up boxes, taping them together and getting the foundation or structure of the costume together. I was hoping to get the prop part of the costume finished this week and then start on the clothing part next week after I knew what the colors would be of the prop. Since Halloween falls on a Monday this year, I decided to email his teacher to verify the date of the Halloween party since Dear Son only attends school on Tuesday, Wednesday and Fridays due to his health. The doctor won't allow more days since Dear Son can't make it through the day. I was hoping I could get an exception from the doctor to attend school for Halloween and more importantly, I'd have to make bus arrangements one week in advance in order for them to transport him to school. I thought they might have the party on Friday or Monday and thought I should ask. After all, the whole purpose of this costume is for the party. It's not like we would go Trick or Treating. Dear Son has a feeding tube and can't eat by mouth.





Today, I received this response from his teacher:

"We are not having a Halloween party this year because of a religious conflict with another student in our class. We decided that we would have a fall harvest party (no costumes) and winter and spring holiday parties as the public schools do in order to respect those who do not celebrate the Christian Holidays. Sorry about this but we are obligated to remain sensitive to others' religious views. "

I must say I am quite surprised. In my entire life, I have never met anyone who talked about nor celebrated Halloween in any religious fashion. (My point is not that the religious issue isn't valid but more to the point, that in general, most people don't associate it in a religious context and even many Christian churches still allow Halloween parties.) Even if they had a fall harvest party with a costume, would that have been horrible? I mean, shouldn't the fun of all the kids be considered and couldn't they have done that while still being respectful of everyone? And what is typically done at these Halloween parties anyway? Isn't it just food, music, dancing, dressing up in costumes and having a few good laughs while listening to Monster Mash? That's what they did last year and the kids had a great time.





Overall, I am a bit annoyed. As a mother of a special needs child, Halloween isn't always easy. It's hard finding costumes for your kids when they can't do the things other kids can do. It's not easy when they can't walk taking them out for, "Trick or Treating". I can remember many years we never went out Trick or Treating because Dear Son wasn't feeling well or it just didn't make sense to take a disabled kid out in cold, rainy weather to go Trick or Treating when he couldn't eat the candy nor even say, "Trick or Treat". In fact, when Dear Son was growing up, there was only one year I ever took him out in the neighborhood for Halloween. It was the year, he was the Cat in the Hat. I finally got over worrying about what people would think since he couldn't say, "Trick or Treat" or walk and took him out in his wheelchair. I hooked up his communication device to the foot rest on his wheelchair and programmed in my voice to say, "Trick or Treat". Then I had to train him and tell him that we were going Trick or Treating and telling him that he should push the button with his foot (his left foot was the easiest way for him to operate the communication device since he didn't have any use of his arms/hands) to say, "Trick or Treat" and then people would put candy in his pumpkin. I had to get a special hook for his wheelchair to hold the pumpkin since he couldn't hold it and I couldn't push the wheelchair and hold it. We had a ball. Of course, it wasn't easy. He'd hit the button with his foot when we were between houses and then when we'd get to the door, I'd tell him to say, "Trick or Treat" and hit the button and he wouldn't, lol. We did this through the neighborhood. When people would see him, they would comment on how cute he was and he would smile. He loved all of the attention. Then they would put a million pieces of candy in his bucket. I would tell them he couldn't eat it but I swear, most people would put a giant handful of all kinds of candy in his bucket. That was then.


And now, we can't have a Halloween Party because of religious reasons. Really?


Note: Dear Son is nineteen years old and suffers from seizures, dytonia and severe developmental delay as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disorder.



Thursday, October 13, 2011

Medical Emergency

Photo of Dad and Dear Son. Dear Son has some seizure issues when he changes positions from lying to sitting so Dad sits him on the edge of the bed and holds onto him until Dear Son "gets his bearings". I decided to take this photo of them while we were waiting.




On Tuesday night, we had a medical emergency however in this case, it wasn't Dear Son, it was my Mom. She is currently in a nursing home and had been not been eating for the past week and was very weak, confused and had episodes of vomiting. Her symptons had started about two weeks ago with a fever and then the nursing home inserted a catheter to get a urine sample to see if she had a urinary tract infection (UTI) (Mom has been unable to walk since having plantar fasciitis in February and through medical missteps never recovered. In August, she was diagnosed as having mild dementia. She is in a wheelchair.). The nursing home diagnosed her with a UTI and gave her a 7 day course of antibiotics. Upon completion of that, my Mom seemed to get worse. She had some vomiting, didn't want to eat and was very weak. She was worried that her cancer was back (She had colon cancer 7 years ago and skin cancer.)



Sister sees her daily and had contacted her Cancer Doc and requested a call with Nursing Home Doctor. Nursing Home Doc never returned call from Cancer Doc (it's been over a week) and we pressed Nursing Home to return calls. Nursing Home had said all Mom's labs were fine and they had no explanation for her not eating or vomiting. Sister asked if and when they would repeat labs to confirm the UTI was gone and they told her they would not do it for another 10 days.



During the past 10 days, Mom had three falls at the nursing home. In Fall #1, she slipped off the wheelchair, and Fall #2 and Fall #3 were falls out of bed. They said she did not get hurt and when I questioned my Mom, she said her hip hurt but overall she thought she was o.k.



Her confusion got worse this week. I visited on Monday and she was in the lunchroom so I said I would wait in her room. She forgot I was there or that I even spoke with her. Another family member visited later in the day and Sister came at night to see her. When Sister inquired about visitors that day, she said no one came to see her.



Last night Sister called me in a panic and said she didn't think Mom looked good and wanted to know what she should do. Sister thought she should be evaluated at a hospital but the Nursing Home begged her to wait until Nursing Home Doc arrived, which would be about an hour. Paramedics had been called and Nursing Home asked if they could "clean her up" before they took her to the hospital. When the staff turned Mom over to change her, she screamed out in pain. Sister asked how long that's been going on and they said this was the "first time" she complained of pain. They tried to talk Sister in leaving Mom there until Nursing Home Doc could see her and Sister called me in a panic asking what she should do.




I told Sister to get her to the hospital asap. If she was sick and Sister was that concerned, then she should be evaluated in the ER. Worse case scenario, if nothing was wrong, (remember Nursing Home said all labs were fine) then no harm would be done by having her go to the ER however on the flip side, I thought it would be good for the ER to document some of her isssues, determine the source of her pain, as well as run labs to see where she was at. That way, if she was injured in the falls or whatever, they would find that.



Sister was not able to stay at the Local Hospital so I called my nursing friend to come over and stay with Dear Son so I could go. I wanted to go to provide information and to see what was going on. When I arrived, Sister was there and the CT scan had been doing showing a perforation of some kind. While we were waiting for the results, I noticed my Mom's hands turning dark grey, almost black. I had never seen anything like this and I ran to get some help. The nurse wasn't concerned and thought she'd be o.k. and I told her to get the doctor in immediately. He came in and nearly turned white. He started tapping on her chest, trying to get her to come to and asked for the remaining monitors to be turned on. At that point, her oxygen was 92, which wasn't horrible however we were losing her and the ER Doc said he could not make any promises she would make it.



Tests results came back and the ER Doc said there appeared to be a perforation of some sort however they weren't sure where. He explained that they would most likely need to do exploratory surgery to find out however they wanted to know her Advance Directives first to see if we even wanted to do the surgery. My Mom had made it very clear that she wanted a Do Not Resusitate a few months back and Sister informed the ER Doc she was a DNR. He said once the Surgeon arrived and evaluated her, that we'd have to make a decision with regards to surgery. I said that if something was perforated, that I thought she should have surgery to fix it. I mean, even if a patient is a DNR, in my opinion, it wouldn't be humane to let sepsis set in and for the patient to die. I thought she should have surgery to fix the issue and then see how she was doing after that. Sister wasn't so sure although she was very stressed and does not have much experience in these situations.
Photo of Sister pointing to pus in the catheter.



The Surgeon arrived to review the CT scan and prepare for possible surgery. Prior to that, they put a cateter in and were astounded at the results. Instead of urine, the tube was filled with pus. There was so much in fact, that the Surgeon said he had never, ever seen that much. He was so astonished, that he needed to call in two other doctors.

Photo of pus that drained in the first few minutes of putting in the catheter; this was in the ER.



The Surgeon reviewed the CT scan and then examined my Mom. He said there was no perforation in the GI tract and no perforation in her abdomen; in addition, there was no "free air". The good news was that her belly was reasonably soft (hard is bad). He said he thought her bladder was acting as an abscess and caused the pain. They diagnosed her with Acute Renal Failure, dehydration and admitted her to the Critical Care Unit.




They are treating her with Zosyn, a broad spectrum antibiotic as well as treating her for dehydration. At this point, the infection is quite serious and they can't make any guarantees on her recovery. The good news however is that despite the severity of the infection, her breathing and oxygen saturation were better than they would have expected. She is expected to remain in the CCU for four days or so.



Yesterday, I went to visit her in the morning and there was still pus draining from her bladder. They are astounded there is still pus draining. The urology consult came in yesterday and said that the bladder walls were so inflamed and that she had a, "whopper of an infection". Her kidneys are very impaired and not even operating at 50%. There is a lot of inflammation in her pelvis. At the nursing home, they had been giving her Naprosyn which was not good for the kidneys. The urologist doesn't think there is a tear but the infection is severe. They may be able to do another CT scan in a day or so but have to wait for some of the inflammation to subside. The CT scan they performed on Tuesday was without contrast. At this point, they aren't sure if she'll need surgery or not but if she does, she will be a higher risk because her blood pressure is so low (It was 78/59 yesterday morning.).





Today was better. The white blood cell count is dropping which means the antibiotic is working. Her white blood cell counts were 16. 8 when she came in and are now 11.8 (10 is normal). So far, the blood cultures for sepsis are not growing, which is good. I was unable to see her today since Dear Son doesn't attend school every day (he is only allowed to go three mornings a week) however other family members visited and I'll be able to see her tomorrow when Dear Son goes to school.





At this point, we hope things turn out o.k. This is Nursing Home #2 for my Mom. I had approval in August to get her into a four star nursing home however she was on the waiting list for so long that when the approval came in, she preferred to stay here. The 4 star nursing home has better medical care which is one of the main reasons I preferred it. Needless to say, she will not be returning home to Nursing Home #2 and we will most likely file a complaint against them. We suspect that when Nursing Home #2 inserted a catheter to take the urine sample, that she was infected. Worse, they ignored the infection and she nearly died. Sister made some calls and we should be able to get her in the better nursing home once she is released from the hospital.





All in all, a stressful week. On a better note, Dear Son's seizures had improved a lot. For several weeks he was having terrible seizures and things are much better. He's had some motility issues (he has them related to his gene defect), which caused some bloating and weight gain but those appear to be resolving as well. As a result of the weight gain, he's been getting extremely hard for me to move. While the weight gain is most likely the result of the motility issue, I've decreased his calories to lower his weight.





I hope at some point, life will get a little better overall. I'd really like to live a normal life, without all of these medical issues.

Thursday, October 06, 2011

Rehab Equipment Exchange



Photo of Dear Son's Gait Trainer




I am excited to share with you today a wonderful resource for parents of special needs children. For many years, when Dear Son was younger, I often wanted an extra walker (gait trainer) to help Dear Son learn to walk. While the insurance company was able to assist us in purchasing a walker, it was sent to school where the therapists worked with Dear Son to help him walk. Dear Son was transported to school in a wheelchair and it was too difficult to send the walker to and from school every day on the bus so we ended up leaving the walker at school all the time. While this was great for school, it didn't give us the opportunity to work on walking at home. With the price of the walkers, we weren't able to purchase a second walker for home use. We would have been open to a used walker but with all of the customizations on his equipment, we were hard pressed to even find a walker similar to what he used let alone one with all of the customizations.





From time to time, we would hear of someone that "may" have some equipment we needed but more often than not, it was never a match. But that was then.



This is now....enter Rehab Equipment Exchange. This is a brilliant website devoted to facilitating the exchange of used rehabilitation equipment. On this website, you can buy, sell or donate used equipment, anything from wheelchairs to walkers, assistive technology and just about anything that is used to assist people with disabilities. Think of it as a Craigslist for used equipment.



It works like this. You go to the website and select the type of equipment you are interested in, whether it's pediatric or adult. On the site, you can browse equipment for sale, or place an ad of equipment you are looking for. When you spot an ad that you are interested in, you jot the ad number down and contact the site which is managed by a physical therapist. They send you an email with the other person's contact information and then you can proceed from there.



I had an opportunity to use this site earlier this summer. Prior to moving, I had Dear Son's old gait trainer in my garage. I had a hard time parting with it when I learned he could no longer walk a few years ago. At the time, I wasn't ready to donate it to the school system because it meant that I had to accept the fact that Dear Son would never walk again. You can read about that here. It's been several years since that time and prior to moving, I had checked with school and the Easter Seals to see if they had a need for this gait trainer and they did not. Once I started googling equipment, I came across the Rehab Equipment Exchange website. On the site, I found a lady who was looking for this exact gait trainer for her son. She lived in another state so I got an estimate on the shipping charges and she purchased the gait trainer for a fee and paid for the shipping. It was an exciting time for both of us. I was able to use the money to cover some of our moving expenses for the new apartment and she was able to purchase a walker to help her son walk. What a wonderful feeling to know that Dear Son's gait trainer was going to another young man who had a dream to walk. I cleaned the gait trainer up and shined it as nice as I could. After all, I remember how excited I was when Dear Son began to walk and the gait trainer wasn't just about walking it was about giving hope to another family, hope that their son would be able to walk one day on his own.




After having used this service, I have a few tips:



1) Once you have decided what you want to sell, check your invoice to determine the size and the features for your equipment. In your ad, you'll need to specify the size of the equipment and the features and your invoice is a good place to start.



2) If you don't have your original invoice, go out to other therapy vendors and check out their ads for that equipment. Once you are there, you will see the different sizes, measurements and options for that piece of equipment. Take measurements of your equipment and match it up to the site so you know exactly what size you have and accessories you have so you can place that in your ad. Sometimes, after many years, it may be hard to remember if you purchased the medium, large or extra large of a certain piece of equipment. It's also hard to remember what comes standard and what pieces are additional.



3) Once you have the item, the size and the accessories for your sale item, go to the Rehab Equipment Exchange website and peruse the sale ads. This will give you an idea of the price range for your equipment so you can price it accordingly. I think it's helpful to browse the ads for, "equipment wanted" to see what price people are willing to pay.



4) After you've decided on a price, it would be helpful to get a shipping quote. Make sure to go to Fed Ex or UPS and have your item boxed and weighed so you have an accurate number. For example, I paid $80 to have the gait trainer boxed by UPS. While I could have boxed it myself, I really wasn't certain how to box it properly to keep it from getting damaged in shipment so it was worth it for me to let them box it, even for $80. From there, I had them take exact measurements and weigh the item. Originally, prior to boxing the item, they estimated the shipping charge to be around $100. After they had it boxed, the actual shipping estimate was $200! We had the shipping charges done at Fed Ex and the price was similar. You want to know what your shipping charge will be so you can include it in your ad.



5) Be sure to list the price for the equipment and then the shipping price. In my case, I charged for the item and the shipping but did not charge the customer for the box. You want to make sure that you list both the price and mention that shipping is extra otherwise, you will can take a big hit just on the shipping. When I was on the site, I noticed that most of the equipment and buyers were out of state so that appears to be the norm and not the exception. As a result, shipping charges are important.



6) Don't forget to insure your package.


7) Use Paypal for security purposes. I accepted payment via Paypal and then shipped the item to the customer.

Overall, it was a great experience. I was happy that I was able to sell this item and thrilled that another young man was able to use it. The mother who purchased the item also stated that she would be interested in any other equipment we had for sale. It had been many years since he used this walker and I didn't have any other equipment for sale however you can see that once you have a buyer, they may have an interest in purchasing other equipment from you.

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.
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