Small Victory! He Can Move His Right Arm!

It's been a long time since I posted, but it's been very busy here.  Perhaps the best news is that Dear Son continues to improve.  As I mentioned previously, his new blenderized diet has improved his dystonia (movement disorder) immensely. For the first time in 21 years, he is able to move his right arm on his own to help put on his t-shirt. I put the arm hole over his arm and he is able to move it slightly to push it through. He is really trying to do this and he's never had any real use of his arms/hands.

 I just took this picture the other day-he needs a shave but overall looks pretty good.

 

As a little boy, he had intense physical, occupational and speech therapy since he was three years old. Shortly thereafter, we had an evaluation at the Rehabilitation Institute of Chicago to determine what was wrong with his arms/hands but the intense thereapy never worked. We had additional outside therapy (outside of school) when he was around ten or so to try to get his arms and legs working better however nothing really worked.  He always used his mouth to operate things like his Barney (chewed on his hand to make him talk) or used his head to butt into an object to let you know he wanted that object or to make it work.

 

When he was in high school, his teacher had a water bottle that she rigged up to help him water the plants. She would place her hand under his forearm and when she felt a muscle move, she would squeeze the bottle (her hand on top of his hand) to help him water the plants. That was the most he could really do. He did enjoy putting his hands in the flour for dog biscuits but overall his arms/hands have never really been functional.

 

When he went to the transition program (it's a day program that they go to from ages 18-22), one of the goals I had was for them to do range of motion exercises for him for his arms and legs to keep them from getting contracted. At that time, he had just come home from the hospital after having the swine flu and he was not able to move his big toe, let alone a foot, a leg or his arms/hands.  I still felt it was important to do that to keep him from getting contracted because at that time, I had great difficulty in trying to get him to straighten his leg. I knew that couldn't be comfortable and I worried it was painful for him as well.

 

Since that time, they have continued to do his exercises however once he started his Now Foods Organic Coconut Oil regime (it's the ONLY brand that works for him) and new blenderized diet made from real food (I took him off of commercial formula via the g tube and  feed him a blenderized diet made from scratch and feed it through his feeding tube), his legs began to move (see ball kicking video where he kicked the ball 10 times) and now he is able to move his arms. The journey has been amazing: The first step was that he began to enjoy his arm exercises. Next, they noticed that he had more trouble moving his left arm than his right, because the dystonia was worse on the left side. Now the aide asks him if he's ready to move his left arm and he give her an eye blink for yes, to let her know when he's ready. Often times, it just takes him a few seconds (10-20 seconds) for him to be able to relax that arm to move it. Then he began to move his arm slightly which I had never seen him do before. And then, in the past two weeks, he started trying to lift his arm up for exercises and trying to move his right arm into his t-shirt.

 

Of the two arms, his right arm works much better/easier than the left. I have him lying on his bed when I get him dressed for school or when I change his diaper. I place the t-shirt over his head and then open up the right arm hole and place it over his hand. As he moves his hand to try to push it through, I pull the t-shirt down over his arm to help, lol.  He's only able to move his arm a few inches but that is a lot of progress in a short amount of time. He now looks forward to it.  I tell him how proud I am of him and I talked to him about how he should be proud of himself too!

 

It took months to get this far.  Just a few months ago, I noticed his dystonia was getting better and that he could move his arms better and I had a catch phrase that I used to reinforce it....I'd say that, "your arms move like but tah!". Positive reinforcement goes a long way with him. Now it's pretty rewarding to see him be able to move his arm in a more functional way.

 

I should also mention that his cognitive ability has improved dramatically as well.  Since December, he was having episodes where he didn't want to kick the ball. The aide, who works with him every day, mentioned it to his teacher and they decided to call in the physical therapist to take a look. He was having seizures at that time, so they rescheduled it. Anyway, the physical therapist came to evaluate him. The aide was explaining to her that he hasn't wanted to do his leg exercises and she wanted to know if there was something wrong with his legs or if it was just a matter that he didn't want to do them. Well, as she was explaining it to the therapist, he got a big smile on his face and started kicking his left leg and then kicked his right leg  to let them know that "could" move it but that he didn't want to.  The aide joked that he was showing off and that when it came time to do his exercises, that he wouldn't do them for her. Sure enough, when the therapist left and it came time to do them, he didn't want to do them. He just laughed when she teased him that he didn't want to do it. It was great knowing that he is able to make choices and he totally understood what they were saying. Everyone got a good laugh over that.  I did have a conversation with him about the importance of doing his exercises since exercise and moving his body is important with his progressive disease.

 

I think the best part is that it just goes to show that you are never to old to meet your goals. I never would have thought that he'd have any arm/hand movement and certainly would not have thought that he'd be able to do this after twenty some years. I realize that he's not going to be able to dress himself or operate a remote control or feed  himself or anything like that. But for him to be able to help to put on his t-shirt, for him to be able to let me know if his arm hurts and to let me know when he's ready, those are victories for sure.  I'll take a small victory any day.

Christmas 2012

We had a nice Christmas.  We went over to Dear Son's paternal Grandma's for Christmas.  She had the entire immediate family there including all of the grandkids and great grandkids. Grandma is 91 now, and reminds us of that every day. 

She ordered some pies from Baker's Square and then forgot which location she ordered them from so they had to call to verify the location prior to picking them up, lol.

She's had it at her house for so many years although she has it catered now instead of cooking everything.  There are other family members that bring the turkey and a ton of desserts. Dear Son's Aunt is an amazing baker and makes a ton of different cookies and other Christmas treats that are not only delicious but beautiful.

The great grandkids where there too.  One of the them got a new hat and she was glad to model it for me and put her hands up so I could take the picture. She is a real cutie.  She ran up and threw her arms around her Great Grandma the minute she came into the house.  She got a huge pink dollhouse for Christmas that had an elevator.  When I asked her what her favorite gift was, she said "a Barbie".  I hope Santa didn't hear that after bringing that huge dollhouse.

Dear Son got a new winter hat from his Dad.  I just loved how his face lit up when his Dad was opening up the present for him. I quickly grabbed my phone to take some pictures.  Dear Son has never been able to open any presents since his hands don't work and he can't grab anything. When he was a baby, I used to wrap everything then unwrap it all to open it. I got smarter as the years went on and switched to gift bags to save myself some time.  Dear Son got some new pants, new pj/lounging pants, new hat, shirts, carousel and money. I didn't decorate our apartment for Christmas this year.  I had stored our Christmas decorations at Dad's and he forgot to bring them over and then it got too late. I decided that since we'll be moving in a few months that I'd skip the decorations this year.  One thing that was really cute though, was that Dear Son was awake nearly the whole night pror to Christmas Day in anticipation of Santa.  He was so excited to open presents.

In other news, December 20th marked the one year anniversary of Dear Son's real food blenderized diet. As you may recall, Dear Son eats via a feeding tube and last year I got rid of the formula and switched him over to a real food blenderized diet. He's doing great on this new diet.  We went to the doctor two weeks ago and he lost more weight. 

 

• Dear Son has now lost 18.6 pounds since I changed his diet. That's great for someone who is essentially an invalid and doesn't move much.
• His cognitive skills are much better. Both his brain and his body work so much better now.  He is now able to communicate with eye blinks in response to yes/no questions. On the Friday before vacation, he has a blast at school because the kids in his class came up to talk to him and ask him questions. He responded with eye blinks and then that kid told another one and soon they all came up to talk to him and ask him questions. Dear Son was positively glowing when his nursing aide told me all of this after school.  In twenty one years, Dear Son has never been able to do this so it's really wonderful.
• His body works better. His dystonia (movement disorder that makes it hard to move since your body is contracted and doesn't relax) is much improved. I can lift up his arm and he no longer has any resistance. I tease him and say his arms, "move like buttah" and he smiles every time.
• His acne improved significantly. He went from bad acne to mild and nearly clear skin.
• He's never sick now even though kids/teachers at school get sick. Some of them got the colds/flu but not Dear Son. How cool is that? He used to be the first one sick and now that he's on a real food diet plus the Now Foods Organic Virgin Coconut Oil, he's been pneumonia free for over two years now and has not had any hospitalizations for pneumonia.
• He looks healthy!

I am also giving myself some credit. This is a huge committment on my part. I make nearly all of his foods. In the past year, all of the bread has been homemade, all of his protein sources are organic, he gets eleven servings of fruits/vegetables a day (some organic, some regular), omega 3's and probiotics. This means that when I get tired, I can't go through a drive through or put a frozen pizza in the oven for him. I've made everything from scratch for him for one year. There were only three times in the past year that I have him formula instead of making him real food.  All of his meals take two hours to administer since he gets four cups of blended food/water per meal and he gets one cup of blended food every thirty minutes. I wouldn't trade these results for the world though. It's also really easy to put together since I use an exchange type system. It is a ton of cooking though.

 

One benefit of his blenderized diet was at an office visit. We went to his wheelchair check up recently after getting some new parts. The wheelchair vendor, who's fitted all Dear Son's wheelchairs since he was three, couldn't figure out what was different. When I mentioned his acne was improved, he exclaimed, "That's what different! I thought Dear Son had just come back from vacation because he looked so good!" He went on and said he was amazed at the change.

 

Overall, it's been a great year. But the best is when I see his happy face.  You can tell that he not only looks healthy now but he feels great.  Here is another picture of Dear Son with his new hat that he got for Christmas, posing with his Dad. I like this picture since you can see how good Dear Son looks and because you can see how much his Dad loves him.

 

I'd also like to thank all of my readers for your continued support and comments. It's so nice to have people interested in Dear Son.  Wishing you all some rest and happy holidays.

New You Tube Video of Dear Son

 

I've been telling you for months what a difference Dear Son's new blenderized diet has made for him and now I am excited to show you a new You Tube video they took at school.  You may remember back in 2009, Dear Son has the H1N1, was on a ventilator and nearly died. He contracted the H1N1 the night before he was going to leave on his Make a Wish Trip.  Dear Son also has a progressive neurological disease and wasn't able to move his leg, feet or even toes for quite some time after that. In October of 2010, I started him on Now Foods Coconut Oil and he was able to move his feet a bit, enough to turn his Lazy Boy chair (it's the only chair he can sit up in). Now, after 10 months on his new blenderized diet, he is much improved. He can now kick a ball, sit in his wheelchair without a bunch of props and is happy to kick the ball. I love the smile on his face after he kicks the ball!

Dear Son still has difficulty moving. I have to roll him over at night and position his legs, arms and entire body. He tires easily. He goes to school from 8 to noon three mornings a week and sleeps the entire day after that. He really can't manage more than three days a week or more than 1/2 of a day of anything. He has a progressive neurological disease.

The good news however is that with his new blenderized diet, made from whole/real foods, he has improved dramatically. Cognitively, he is more alert, more aware and happy. Physically, he is now able to move his legs, kick the ball, sit in his recliner and take his feet to turn the chair around (it's a swivel chair). He is also able to stretch his legs in the morning by himself. He does this every day now and previously could not move them at all. As a matter of fact, I can remember one year when his leg moved and I woke up in the middle of the night, wondering what the noise was.

You can click on the previous You Tube video in my side bar to see just how far he's come.  I also want to thank his LPN Linda at school. She is Dear Son's one on one aide and she works with him every day to do his exercises (which include kicking the ball).  When I look at the old You Tube video and compare it to the new one, it doesn't seem like the same kid!

 Note: Dear Son is 20 years old and suffers from intractable seizures, dystonia and severe mental retardation as a result of a random mutation of the ARX gene; he also has a progressive neurological disorder.  http://www.youtube.com/watch?v=28cz65fWPW4

Dear Son Blenderized Diet & Update

It's been a while since I've given an update on Dear Son. I know many of you have asked for more detail on his blenderized diet.  Overall, he's done amazingly well. Recently, he went to the neurologist and he lost 10.5 pounds in the last three months. He has now lost 15 pounds since December 20th when he started his real food diet. I am really happy about this because he's eating the same number of calories as he did when he was on the formula (which the second ingedient is corn syrup and this is one of the better formulas that the nutritionists at the Big City Children's Hospital recommended, lol.).

 

 

Since he only gets around 1300 calories a day, I didn't feel good about cutting his calories back to lose weight. I am thrilled though, that even though he can't move hardly at all, that he was able to lose this weight.

So what is he eating? His Mama's cooking!  Seriously, there is a whole lot of cooking going on here. I cook on average five items per day.  I make everything from scratch and use mostly fresh fruits and vegetables. Dear Son gets 11 servings of fruits and vegetables per day! 

I created my own diet plan for him and breakfast consists of : one fruit, one probiotic, one carb and an omega 3. A sample breakfast is 1/2 cup of kefir, 1/2 cup of berries or a piece of fruit, 1/2 cup organic brown rice cooked (think of rice cereal; I like Lundberg Brown Basmati Rice) or 1/2 cup oats (soaked and/or cooked) and 2 tbsp of organic ground flaxseed or some other omega 3 (often I'll use different types of nuts/seeds).  Today's breakfast was 1/2 cup Lifeway Cherry Kefir, one peach, 1/2 cup oats and 2 tbsp of organic ground flaxseed. I add 1.5 cups of water and place in the Blendtec. I hit the smoothie button once and then Level 10 for 35 seconds. I pour it in a bowl and then give him 4 syringes (equals one cup) every 30 minutes. After being on the diet for a while, I now will give him 8 syringes for the first serving of breakfast and then wait 40 minutes until the next cup. Then I give 4 syringes (1 cup) and wait another 30 minutes.

Each meal consists of 1.5 cups of water. If I am giving him foods that have a lot of water content, I'll reduce the water a bit to a little over a cup so that I can keep the total volume under 4 cups.

Lunch and dinner are the same. I do all of my cooking early in the day and whatever we have for lunch is what he'll have for dinner. After all, it's going right into his feeding tube and nothing via his mouth. 

Lunch is 4 cups (fill it up to the 4 cup mark on the Blendtec) of leafy greens (I rotate all of my greens according to a schedule.), 1 fruit, 1 cup of cooked vegetables (1/2 cup is one serving), 2 oz of protein, 1 carb (usually is one slice of my homemade bread which his 3.1 grams of fiber) and 100 calories of fat (most often it's a tablespoon of butter).

This meal consists of 4 cups organic spinach, organic orange, organic sirloin steak, asparagus, my homemade whole wheat bread and butter. Off into the Blendtec it goes!

 

 

 

 

 

To give you another example, today's lunch was 4 cups of leafy green lettuce, 1 cup whole strawberries, 1 cup snow peas, 2 oz. of organic chicken (seasoned with sea salt and organic black pepper), one slice of whole wheat home made bread, one tbsp of sweet cream butter. I add 1.5 cups of water and blend it. I hit the smoothie button and then Level 10 for 35 seconds. He gets the same formula, so to speak for dinner. While I don't count calories any more, I do measure everything.

My protein sources for him include: Sommers Organic Skinless Boneless Chicken Breast, Sommers Organic Sirloin Steak, Sommers Organic Chopped Sirloin 97/3, Vital Farms Organic Eggs (see photo above), Albacore Tuna, Trader Joe's Ahi Tuna and Eden Organic Black Beans to name a few. I make all my own bread for him. I rotate the greens and try to use as many organic fruits and vegetables as I can afford.  I also give him 1/4 cup of kefir  at midnight with his meds. For omega 3's, I vary the nuts/seeds and use other food sources for omega 3's.

In this photo, Dear Son is having romaine lettuce, carrots, an organic chopped sirloin hamburger (2 oz.) (made with organic onions, sea salt and organic black pepper), on his Mama's home made poppy seed bun (he gets 1/2 of one) and an herb butter mix (downsized for us) spread on the bun.  The fruit was pineapple.

In this photo, here is a smoothie I made for him.  Back in April, before I converted his school lunch, he'd get 1 can of formula at school and then I'd make a smoothie for the remaining calories. In this photo, he has organic baby spinach, organic banana and organic strawberries for lunch.  As of June, all of his meals are now converted to real food. 

 



Things I won't do are the following: no fake foods, no junk foods, no foods with sugar (sugar is an anti-nutrient so I try to stay away from that), no protein powders, no soy, no non-organic meats/poultry and no non-organic milk. I rarely give him any milk since I give him kefir although he does get some dairy.  I also watch toxins for him.  I stay away from any canned foods (contains BPA), never use a microwave (gave that up 2 years ago plus it denatures the food), don't use teflon, no aluminum cookware and try to limit toxins of any kinds. I also use natural or plant based cleaning products in our home. I transitioned to natural cleaning products a few years back but I wanted to mention it here. 

There were a few books that were the foundation for the blenderized diet.  The first is, "Never Be Sick Again". I think this was a great book because it helps you undertand the role of both nutrition and toxins in terms of disease. Second, I liked the book, Super Foods RX: 14 Foods That Will Change Your Life. While certainly, we are inundated with tons of books and internet links to "super foods', this book made it easy for me and provided a nice foundation for super foods. And finally, Nourishing Traditions by Sally Fallon. I won't go into more detail on these books since this post is long enough.

Overall, it's been a great transition for Dear Son.  He seems happier, more alert and cognitively, he is much improved. He's lost a lot of weight and this is actually the only time he's lost weight other than when he's been sick. His acne improved and his face looks 85% better and he's no longer on an antibiotic for acne and no longer uses a prescription acne cream. He no longer  has dandruff. He used to have dandruff so bad I kept his hair short. Now it doesn't matter. The new blenderized diet seems to make him feel full-he no longer wakes up early in the morning wanting me to start his food. He sleeps through the night more and seems overall a lot better. His neurologist says it's the , "best he's seen him in years" and his other docs are amazed that he's so much more alert now.

While it's been great for Dear Son, it's also been hard. In the beginning, I counted every calorie online and this was very time consuming, along with cooking all his food from scratch plus working.Meals take a while because he only gets 1 cup every 30 minutes so a meal takes two hours to administer on average. I no longer count calories for him but I do measure.

Some things did not go very well.  Initially, I tried to put the food through the feeding bag. I learned later that blenderized diets never go through the bags because the feeding pumps aren't strong enough to push the food through.  Also, we had to get a larger button (this is the button that goes in his stomach and which is where I feed him).  The minimum size is a 14 FR for tube feedings and we only had a 12 French which made it much harder.  In the beginning, I didn't know what setting to use for the blender-should I try the juice button, smoothe button, soup button or what?  It was a bit overwhelming and since blenderized diets aren't promoted, there isn't a lot out there. It was a lot of trial and error but now it easy to do.Because I created a formula, I can create a meal for around 400 calories no matter where I am at and I like that.

On the down side, there were a few disasters.  First, at the beginning of May, I converted his breakfast over from formula to the blenderized diet. I added kefir which contains probiotics. Well, he got the flu after that. I am assuming that his body wasn't strong enough yet to battle the bateria in the kefir. The flu threw me for a loop. On the one hand, I was so depressed he got the flu and then I thought that was pretty unrealistic. The good news is that while he got the flu, he only threw up twice AND I was able to manage it at home and he didn't have to be admitted to the hospital. This was the first time in his life that he had the flu and it didn't require a hospital admission. Amazing. The second flop came when I tried to add a multi-vitamin to his regime. I researched these multi-vitamins and thought I found a good one. I emailed the vitamin manufacturer to ask some questions since I would need to crush it to administer it and they had a formula that should not be crushed. Anyway, they directed me to the multi that I could crush. I gave him one dose and after two days, I added the second dose (the normal dose was two vitamins/day).  Well, Dear Son began having some severe choking episodes after that and nearly choked to death.  I ended up stopping the vitamins. I am not sure what caused the severe choking but my guess is that the green tea extract in the vitamins caused seizures and he wasn't able to process the secretions and he choked. I had to stop giving him tea in February because the tea seemed to increase seizures for him (he was born without any gaba due to his gene mutation) and my best guess is that the green tea extract was too much of a stimulant for him. At this point, I have been reluctant to add a multi-vitamin after that disaster.

Aside from the blenderized diet, he overall is doing well except for some severe choking. Dear Son's throat muscles have deteriorated with is progressive disease and he is unable to process his own secretions. Normal people swallow their own saliva throughout the day but he can't swallow (which is why he uses a feeding tube) so he is choking on his own saliva.  We have tried the normal treatments of Robinul and even botox injections in 2008 for him but they both failed. We had been using a Scopolamine patch for many years up until the manufacturing shortage. Once we stopped the patch, we learned that it was actually causing seizures for Dear Son. When we tried the patch after the manufacturing issue was resolved, we could tell that it was causing seizures for him so now we can't use that.  We met with an ENT to discuss the possibility of the removal of his submandibular glands and one of his parotid glands. I thought perhaps since Dear Son was healthy, this might be a good time to consider this surgery.  The idea is that if those salivary glands were removed, the problem would be lessened/solved and then Dear Son wouldn't choke if less saliva was created. Well, it wasn't that easy. We met with the surgeon and even if he did the surgery, there was no guarantee it would work. In some cases, there is a lot of improvement, in others a 50% improvement and in others, no improvement at all. Dear Son is a high surgical risk for respiratory depression (his lung collapes in May of 2009 during his surgery) and a huge surgical risk for aspiration (his lung collapsed when they didn't protect the airway with a breathing tube so he choked on his saliva and it pooled causing a mucous plug and his lung collapsed). The surgeon suggested we meet with anesthesia to determine the risks.  As it turned out, the risk proved too great for us to do any surgery. Not only would they have difficulty getting him intubated (putting the breathing tube in his for surgery) but there was no guarantee they could extubate him (meaning remove the breathing tube after surgery and having Dear Son breate on his own). There was no guarantee he wouldn't be on a ventilator and no guarantee they could remove it. In the end, the risk was just too high. So now we are left with him coughing and choking a lot. Some days, it's very bad and on those days, we put the patch on for a few hours until the siezures start up and then we have to remove it. The whole surgery discussion took us a while and it seemed like we had nothing but doctor visits for a few weeks.

Other than that, things are o.k. I hesitated to give an update until I had news to share. Some days, it's depressing when he's choking knowing there isn't anything more I can do. I know at some point, his time will come but until then, I'll do everything I can to keep him as healthy as possible. September will be two years since Dear Son's been hospitalized for pneumonia so that's progress. I started him on Now Foods Organic Virgin Coconut Oil and that has worked well. The blenderized diet has worked well and hopefully I can continue to build his immune system.  In the end, it's all a lot of work but I can honestly say that I work hard every day to keep him as healthy as he can be. For a man like Dear Son, it's not easy trying to keep him healthy. His body just doesn't work like a normal person's. I am thrilled though for all of the progess he's made. We saw the neurologist two weeks ago and he was surprised at how alert he was. We saw the GI last week and he couldn't get over how well Dear Son was doing. He told me three times not to change anything and that Dear Son looks great. He nixed doing any kind of testing on Dear Son since the risk of performing a test on his was too high.

So, that's where we are at. Dear Son is doing really well overall but the choking remains a problem and there isn't much we can do about it.

Lowest Medical Expenses in 10 years!

As you know, Dear Son was a very sick young man for many years. Over the past ten years, he's been transported by helicopter nearly ten times, had multiple hospital admissions, had two MRSA pneumonias, countless bacterial aspiration pneumonias and viral pneumonias, the H1N1 virus as well as a few surgeries: had a gtube implanted, a Vagus Nerve Stimulator implanted, a Vagus Nerve Stimulator replaced (battery depleted and they replace it with a new model) and a lot of other unfortunate medical issues. He was also diagnosed with a progressive neurological disease one top of everything else. In 2009, several physicians at Big Academic Medical Center told me they didn't think they could save him anymore if he got pneumonia and that he would most likely die from it. He had multiple lung collapses and had been placed on a ventilator several times in the past few years with his bouts of pneumonia. They recommended palliative and hospice care during different admissions.

In 2010, I discovered Now Foods Organic Virgin Coconut Oil and I was able to stop all pneumonias from that point on. He has not had any admissions for pneumonia since September of 2010 and in a few days, it will be 18 months since he has had a hospitalization for pneumonia. On top of that, I started a blenderized diet for him on December 20th of 2011.

Last year, he had medical expenses that were much lower than previous years. In fact, his billed charges were well under six figures. I thought it might be fun to go back and check previous years. I keep spreadsheets by year and discovered that Dear Son's medical expenses were the lowest in ten years. Our highest year was 2009 with multiple admissions including the H1N1/viral pneumonia and the second was in 2006 with two MRSA pneumonias. These are billed charges of course which is prior to medical discounts. (And yes, these were covered by several insurance plans.) This year we hope for more of the same and hope our medical expenses will be even lower.

While I think most people know that nutrition is important for good health, I don't think most people understand how difficult it is to get a chronically ill person back to good health. It's certainly not easy. People are beginning to notice that Dear Son is really different now-he's more alert, engaging in more activities, not sleeping as much and just enjoying life more. At home, he's so much fun now that he feels better.

The other plus is that we need less formula which means our medical expenses will continue to decline. We are down from some 6-8 cases a month to two. I still haven't converted breakfast from formula to a blenderized diet but it will happen. Right now, I am still tweaking his diet and putting into action some items the nutritionist suggested.

On other news, this weekend I took some pictures of my desk/table that I painted. It turned out great and looks fabulous. I hope to post those in a few days.

Merry Christmas to Dear Son from Blendtec!

As many of you know, I’ve been a huge advocate of Now Foods Organic Virgin Coconut Oil for Dear Son. Once I started using it for Dear Son, I was able to nip any colds, flu or pneumonias from the start and since using it daily, Dear Son has not been hospitalized for pneumonia in 15 months. Prior to that, he had two to three a year. As you know, Dear Son has had a pretty rough time these past few years due to numerous hospitalizations. In 2009, the day before his Make a Wish trip, he came down with the swine flu along with a viral pneumonia and nearly died. At that time, the doctors told me that they did not think they could save Dear Son any more and that he would most likely die of pneumonia. He had several more hospitalizations after that and in May of last year, he was finally well enough to take his Make a Wish trip.

All total, it took six months from his hospitalization in 2009 for him to be able to sit up for two hours, long enough to make the trip to Disney in Florida. He still wasn’t well and we had to limit our activities. We had a wonderful time though. While we were there, we went to Universal Studios. One of my favorite memories from the trip was when we walked through the entry gates. They were enormous and it was like walking through the gates of heaven. As we walked through, I began to cry. We had spent months waiting to go on Dear Son’s Make a Wish Trip and we talked about it forever and when the swine flu happened, I thought we’d never make it. I felt like a failure in that I thought I waited too long to take the trip and thought he was going to die, having never made it. I had planned his Make a Wish Trip to coincide with his 18th birthday and instead, he got the swine flu the day before we left and he had respiratory failure the following day and was on a ventilator fighting for his life on his 18th birthday.

The Make a Wish trip was powerful for all of us. One of the things that it did for me and for us was to give us something to look forward to. When you care for a special needs child, it’s hard to do normal tasks of daily living so you don’t do as much as able bodied people because, well, everything is sooooo hard. But it wasn’t just that we had something to look forward to, the powerful part was that we broke the cycle of going to the hospital. For many years, the only placed we ever packed for was the hospital. Dear Son has been hospitalized some 70 plus times in 20 years and while most people have a packing list for their vacation, I had a packing list for the hospital.

After our trip, I vowed that I never wanted to go back to the hospital. I began researching things for us and discovered green spinach smoothies and organic, virgin coconut oil. I began drinking smoothies and was amazed at how I was able to relieve the pain from my arthritis with these amazing drinks. I started in June of 2010 and never looked back. Late last year, I discovered Now Foods Organic, Virgin Coconut Oil and began giving it to Dear Son. I soon learned how it would prevent colds, flu and pneumonia in him. It tooks months to figure out the right dose for Dear Son but I did and I am proud to say that it has now been 15 months since he’s been hospitalized with pneumonia. Certainly he’s had a few hospitalizations since then, but NONE have been for pneumonia.

A few months ago, I decided I wanted more for him. I thought that while the organic coconut oil was great once he had an illness, if I could build his immune system up, I could PREVENT sickness before it starts. I started reading about how I might use the nutrition in real foods and give that to him and take him off of formula feedings. (I had tried giving him real foods blended up but had failed since the food kept clogging the tube and I just gave up. )I made a list of all of my nutritional goals for him along with all of his conditions and began researching foods that would help each of his conditions. To give him real foods though would require a high powered commercial type blender, like a Blendtec or VitaMix. I researched the blenders and watched numerous videos and loved the Blendtec from the start. The Blendtec Total Blender would pulverize the food well, was easy to clean and fit under the cabinets and best of all, didn’t require a tamper. The only problem was that I couldn’t afford it. I mean these blenders sell for nearly $500 and I work part time so I can care for Dear Son who requires 24/7 care.

In early November, I sat Dear Son’s Dad down and told him I wanted a Blendtec for Christmas for Dear Son and I. I told him that I knew it was expensive, but that was the only thing I wanted for Dear Son. I normally never ask him for any Christmas gifts although he always gets Dear Son and I something nice. He hemmed and hawed a bit and I told him that I didn’t need an answer right away and that he should think about it. Then he said he didn’t think I’d make the food for him. But I persisted. He knew that I had been drinking green spinach smoothies for around 18 months and that I was into organic food and that it wasn’t a whim. He also knows I take really good care of Dear Son as does he. Then he asked what I’d do when Dear Son came to his house for the weekend. I said I would make all of Dear Son’s food and send it over. I sent him Blendtec videos and he still said no. Then I entered a Christmas Wish program on a local radio station asking for a Blendtec blender for Dear Son. It was the only thing I asked for.

Shortly before Thanksgiving, Dad asked for Christmas ideas for Dear Son. I told him that the only thing I wanted for Christmas was a Blendtec. I said I’d send him a list of some other options and sent him a list with the Blendtec at the top of the list. Here is what I wrote:

Blendtec Blender-"This is the only thing I want for Dear Son and I. I know
it’s expensive, but I can make his food and build his immunity to keep him well.
I’d rather have gift cards for the blender than anything else."

Right before Thanksgiving, I went to the Blendtec demo at our local Costco. They were offering the Blendtec and two blending jars for $474.99. I saw the demo and was excited. I called Dear Son’s Dad on the way home and told him about the demo. I tried the smoothies there and could taste the difference in the smoothness. I needed the blender to pulverize the food enough to get it through Dear Son’s feeding tube. The only thing I wasn’t clear on was whether or not there was BPA in the blender jars. So I sent Blendtec’s Customer Service an email regarding that issue.

Around this time, Dad called me and said he’d get the blender for us for Christmas. Blendtec responded to my email and clarified that the jars did not contain BPA and that they switched to BPA free jars in 2009. I thanked the customer service person and told her a little about Dear Son and how excited I was to get a Blendtec and start making his food to build up his immune system. And that was that.

Some two weeks later, I got an email from Blendtec. The person I wrote to had forwarded my email to their executives and they wanted to talk to me. They asked me for my phone number and the best time to call. A few hours later, I received a call from the customer service person. She said that she had forwarded my email to the executives at Blendtec and they wanted to send me a Blendtec blender! Can you believe that? I couldn’t! How cool is that? I mean, they had no idea how much I wanted a Blendtec and that it was the only thing I asked for at Christmas. They didn’t know how much I had been through with Dear Son or anything like that and yet, they offered to send me a reconditioned Blendtec blender. It was so exciting!

So let me show you my new baby….what do you think?

In this next photo, I am making tomato soup. It was delicious! Both Dear Son and I had some. I put his in through his gtube!

In this next photo, is Dear Son's first entire blended meal. I gave it to him today. This is a full day's meal although I am only giving him one blended meal a day for the first month as I need to transition him from formula feeds to blended foods gradually. More about that later. I created this entire day's meal. It includes: organic banana, organic strawberries, orange, organic spinach, organic broccoli, organic carrots, home made bread, organic chicken breasts, organic onion, walnuts (for omega 3's) and organic milk. It felt so good to give him this rather than formula. There was so much joy in making this for him! I got to be a real Mom again and make my son a "real" meal. Let me tell you, there was a lot of love in my kitchen today as I made up his food!

In this next photo, is the first smoothie I made in my new Blendtec!

So, all in all, a very exciting gift. It was so unexpected! Sometimes, Christmas wishes do come true!

Since I received the blender, I've been using it every day. I'll write more posts later on how to make a blended diet. In the meantime, Dad returned the Blendtec he purchased for me and instead, he'll give us the money to purchase some other items we need. And of course, I wrote Blendtec a lovely thank you note regarding our new blender.

What a wonderful way to end 2011. I just love this blender and it's amazing all of the things you can make. Everything I have made is just delicious. Thank you Blendtec for a wonderful gift and amazing product!

Note: If you'd like more information or to read more reviews on the Blendtec Four Side Blender, you can check it out here at my Amazon Store.

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.

Summer 2011

The weather was beautiful so Dear Son and I went out for a nice walk in our neighborhood. This picture was taken on the walking trail which surrounds the golf course and runs along the river.

He's not feeling very well. He's been feeling hot the past two days and I think he was coming down with a pneumonia. His breathing deteriorated last night and I ended up doing a nebulizer treatment around 1 a.m. this morning and then I stayed up until nearly 4 a.m. watching over him. His oxygen saturation had dropped to around 87 or so, which is quite low, so I wasn't sure if we were going to have to take a trip to the ER or not. When he gets sick like that, I never allow myself to go to sleep in case he needs me. Around 4 a.m. though, I felt comfortable enough to lie down but I slept on the sofa near his bed so I could hear him breathe.
I ended up giving him several nebulizer treatments today and gave him one prior to our walk; I also gave him some extra doses of the organic, virgin coconut oil to help get rid of any infection. Usually, he smiles when I take him for a walk. Since his lunch takes three hours via his gtube, I just hook the pump on the wheelchair and take a walk. That way, he can eat and we can get outside. I call this a "picnic lunch".

This is the bridge over the river that runs along the golf course.

I like the perennials that are planted here.

This is the view as we head back home. It's my favorite part of the walk. It always looks different depending on the season. I never get tired of it. I also joined the Arboretum this year, which is located a few miles from our apartment, so I'll be walking the trails more once fall rolls around.

More views. It's so relaxing.

It's nice because you always run into people on the trail.

The picture below is a picture of the new flowers/landscaping they planted this year. We had new owners take over and they removed the fountains and annuals and planted perennials instead. I still miss the fountains however the perennials look nice too.

I removed the particulars on the entrance sign in the photo below. This is the street to our complex.

More pics of the flowers.

I like all of the brick and classic architecture.

This is the view as you turn into the clubhouse. Our clubhouse is gorgeous as is the pool.

One last picture of Dear Son as we head home. He looks pretty tired by now. On a different note, I painted his dresser last weekend so I'll try to post those pics towards the end of the week. I am hoping he'll sleep well and feel better so I can get some sleep. I think he seems better tonight but we'll have to wait and see. It's a little different when you have a child that is medically fragile and severely disabled like Dear Son, versus a normal child that is ambulatory. It's a lot easier to keep kids healthy when they can walk, sit up and eat on their own.

Update: Between the nebulizer treatments and the organic virgin coconut oil, Dear Son recovered just fine and by the time he went to school on Wednesday, the 24th, the nurse said his lungs sounded perfectly clear.

Dear Son "You Tube" Video

I received the video of Dear Son at school today. I added in the post below but thought people might miss it. The school linked the video via a private account on You Tube so it's only available via the link. Unfortunately, the video is sideways, not sure how to fix that. The good news is that you can see Dear Son in rocking chair, sitting up with his head up, smiling, laughing and moving his feet rocking the rocking chair. You may remember that in many of his photos last year, he couldn't lift his head. Of course, you'll hear the country music in the background, lol. They have his head propped a bit since he needs some support for the back of his head and the back of the rocker isn't quite tall enough. You can see and hear his teacher in the link. This is pretty amazing to me-I never thought he'd regain the use of his feet again. I mentioned previously how well he was doing since I started him on the organic, virgin coconut oil but you can see for yourself what a difference it made. But the best part is that he is really happy. I just love that. I hope you like it too.

http://www.youtube.com/watch?v=khCTr92BA40

As I mentioned here, I felt that coconut oil was helping Dear Son. I had been using it for a few months when I read about a physician, Dr. Mary Newport who started using it to help her husband with Alzheimer’s disease. Recently, she gave an update on the improvements her husband experienced since starting coconut oil in 2009 and how he is doing today, February of 2011. For more information on coconut oil, you can check out these links on Dr. Newport’s website here.

Blizzard 2011 Photos From My Apartment

This is the view out of the living room window at 2 p.m. yesterday afternoon.
This is the same view out of my living room window at 8 a.m. this morning after over 20 inches of snow.

Another view of the same spot.

The view out of both windows this morning. Notice the snow is up to nearly the mid-point of the window.
The view of the left window.
The view of the right window.

Looking out of the dining room this morning. Not sure why the vertical apartment blinds look purple in this photo (they are white).

Another view.

In my bedroom, my cat Wiggles tried to look out the window. He cried when he coudldn't look out, lol.

Photo of Dear Son's Dad's house.

Photo of Lake Shore Drive in Chicago. (Photo Credit~Chicago Tribune)

This is Paula Deen's Hurry Up Chicken Pot Pie recipe that I made last night. I downsized the recipe a bit and skipped a lot of the butter. I can't eat like this very often and make this recipe about once a year, but on days like today, it's perfect.Here's a photo of a piece; I am not a food stylist, obviously. It was good though.

In other news, my pc was out for most of the day. I called my ISP and they were only taking emergency calls. I am pretty sure if there is a blizzard out there and I am stuck indoors without internet, that it's an emergency. Don't you think? O.K. maybe I am just addicted.

Dear Son had some problems today. He has been having more seizures lately and had a rather long seizure this morning. In addition, he woke up with a lot of coughing today and was wheezing. I've done two nebulizer treatments today and will continue treatments tonight. I had to give him some extra seizure meds so I contacted the pediatric neurologist fellow on call to get some direction with regards to the additional seizure medication and any respiratory depression. Of course, he suggested that we come to the ER... I explained that we can't get out, lol. I told him that we'll come if the wheezing gets worse. Currently, he doesn't have a fever, his oxygen saturation is o.k. 92-94 earlier today and 95 at 4 p.m. I have the nebulizer and oxygen at home if needed for emergencies. I am fairly confident and know when I am in over my head but I did feel better getting some clarity with regards to the seizure medication and the respiratory depression. I figured it was better to call earlier in the day than to wait until we had more issues later tonight. I'll watch Dear Son closely and we'll see. Of course, I have increased the organic, virgin coconut oil to help with the cough.

Update 2/3/10: Dear Son seems better today. I gave him organic, virgin coconut oil yesterday as follows: 1 tablespoon with 6 a.m. meds, 2 tablespoons with noon meds, 1 generous tablespoon with dinner meds and 1 tablespoon at midnight, all via his gtube. (If you are using coconut oil for any type of healing, you do need to start slow. We started several months ago with only 1 tsp. per day. If you try to go to this much all at once, you will endure severe stomach upset/cramps and diarrhea. Once you are used to it, you can increase it when you start getting sick. We use 1 tsp./day when we are well.) I continued with the coconut oil today with all meds however I am only using 1 tablespoon at each meal. He slept well last night and was able to breathe fairly well through his nose all night. He did sound crackly around midnight and a few times during the night and did cough a few times this morning but overall was about 70% better than yesterday. While he was quite tired and lethargic yesterday, he also seemed like he didn't feel well and had a sad face as if he didn't feel well all day. This morning he smiled. After breakfast, I gave him another nebulizer treatment and he seemed better. He slept on and off but did wake up, spin the recliner around with his feet and seemed happy. By 1 p.m. today, he was about 85% of his total self. I can't begin to tell you how amazing it is that he could turn around from where he was at yesterday afternoon. He was wheezing very loud at that time and having a lot of seizures (sickness usually lowers his threshold). It was the same as he was any time he's had pneumonia. It's really amazing and quite powerful at the same time. Powerful in the sense that as a mother I have some options that I can do at home to help Dear Son to feel better and prevent a hospitalization. We aren't quite out of the woods yet, but I do believe that he is doing remarkably better than yesterday. This is quite an achievement for a chronically ill, severely disabled young man with a progressive neurological disease. I don't expect this organic, virgin coconut oil to be the end all for him or cure everything but rather, it's a tool that I can use to help prevent a pneumonia. I do suspect that there may and will be times when it may not work but for now, I am going to celebrate the fact that it's been six months without a hospitalization.