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.

Blenderized Diet-A New Beginning

Dear Son’s Blenderized Diet is going amazingly well. As you know, I received a Blendtec blender for Christmas and was able to start transitioning Dear Son from formula to a “real food” diet. Dear Son has been using a feeding tube since 2004 for medications and in 2006, had to transition to formula and could not longer eat foods by mouth due to aspiration issues.

In the beginning, my goals were quite simple. I wanted to feed him real foods to help build his immune system. I researched blenderized diets, foods to help his immune system and read everything I could on the internet to assist with this transition. I started the transition in December but there was a steep learning curve. Things didn’t work out in the beginning and I had to go back to the drawing board and try to figure out how to adminster the food.

I finally got the hang of it and on December 20th I was able to start feeding him “real food” for dinner. The transition went so well that two weeks later, I added “real food” for lunch. And then my life totally changed. Dear Son began sleeping through the night. Apparently, he must have been hungry which is why he didn’t sleep well. I had no idea since I had been following doctor’s instructions to decrease his formula intake to help control his weight. Well, when I transitioned him to real food, I researched not only foods to help his immune system but I really worked on trying to make sure he was getting enough fiber in his diet to help with his bowel movements. (Caution-You do need to pay attention and make sure that they are getting enough water when you increase the fiber otherwise they will get backed up.)So even though his calories were the same, the fiber appeared to help him “feel full” and he slept through the night. Now certainly, I’ve known for some time that fiber makes you feel full however I never thought it would have had this kind of impact for Dear Son. I figured this out after about the fifth day when he no longer woke me up. For the first time in ten years, I was able to get more than two consecutive hours of sleep while caring for Dear Son. He slept so well in fact, that I had to force myself to get up to get his medications since he no longer woke me up. In the last ten years, the only time I’ve ever had to set the alarm clock was on school days, so that I could get up at 3:40 a.m. to get his food started in the feeding bag for school. This is life changing. For the last ten years, I have been up multiple times per night and I worried about the long term effects of chronic sleep deprivation on my health. There are many studies that document these effects and I considered chronic sleep deprivation my number one health issue.

Where Dear Son is concerned, the fact that he is sleeping soundly will help him as well. On a cellular level, his body will be able to repair itself now that he is sleeping soundly as well! I can only imagine what a difference it will make over time for him as well.

Not only is Dear Son sleeping well but his bowel movements are normal. When he was on formula, he required Miralax to help with motility (he has motility issues related to his gene mutation). Even with the Miralax, it was a fine line. He either had no stools or drippy stools. Now he has at least one soft stool per day. With the formula, he was getting 6 grams of fiber/day and now that I feed him “real food”, he has on average, 20 grams of fiber between lunch and dinner. I still have him on Miralax but will wean him off over time. I plan on continuing lunch and dinner meals with the real food for a while before transitioning breakfast.

Overall, everything seems better. I’ve been using Livestrong.com to track his calories, protein, carbs, fat and fiber and then inputting all of this information into an Excel spreadsheet. I created formulas so that I know precisely how many calories he has per day plus all of the other nutrition information.

In addition, I use a recipe software program to record meals I’ve created for him. That way, I can save time by having meals created and calorie counts all figured out.

I have reviewed Dear Son’s new feeding plan with his doctor and he approves. I had finally located a registered dietician who is an advocate of blenderized diets and will be setting up an appointment to review his meal plans and make sure that I am not missing anything.

Overall, it is clearly the best decision I have made in the last ten years. I plan on doing a blenderized diet series to walk through everything a parent will need to transition from a formula to a blenderized diet. In the meantime, I am having the time of my life cooking for Dear Son. It is the greatest feeling to be able to cook a real meal for him!

Do you feed your child a blenderized diet? If so, what is the one thing or best tip you think all parents should know?