Friday, December 24, 2010

Merry Christmas!

A special thank you to all of my blog readers for your support and prayers for my Dear Son over this past year. I have been blessed this past year to see my son grow up and spend more time with him. This season, I am thankful for many things: my family, my friends, Dear Son's doctors and medical staff who took good care of him, Dear Son's teachers and staff that not only take care of him but make it fun for him at school and for the bus drivers and bus aides, who always go that extra mile to care for him. It takes a lot of people to take care of children like Dear Son and I am blessed beyond words to have the support of everyone. It has also been wonderful to have so many people who support and read about Dear Son on the blog, it means a lot.

So today, I feel enormously blessed. Dear Son is happy and healthy this Christmas. I had time to take a picture of Dear Son and have Christmas cards made, something I was unable to do last year. In addition, I sent out a Christmas letter to most of them. I have never done this before however it was interesting to take a look back, at everything Dear Son has been through this past year. I thought you might enjoy it too.

2010 Christmas Letter

Happy Holidays! Dear Son and I are excited to celebrate Christmas this year. He had a very rough year in 2009 and as a result, I was unable to send out any Christmas cards. As you are aware, Dear Son has been having more health issues over the past few years, now that he can’t move very much. He's had bouts with pneumonia over the past few years and in May of last year went into the hospital to get his device that controls his seizures replaced. A medical error was made and his lung collapsed so he spent weeks in the ICU and it took months to recover. All of this was in addition to losing my older sister to colon cancer in March of 2009.

In June of last year, I applied to the Make a Wish Foundation for a wish for him. Dear Son has intractable seizures and is severely developmentally delayed due to a random gene mutation and now suffers from a progressive neurological disease. He will never get better. Our wish was approved in June of 2009 and we were scheduled to go to Disney for his 18th birthday in November. I was so excited. We chose Disney since it was accessible and we could get around easily with his wheelchair. The Make a Wish Foundation did a beautiful job of setting up our every need, making sure they had a hospital bed for him, his formula and all of his needs.

In late October, we went to the hospital to get his swine flu and flu vaccines before our trip. They ran out of the swine flu and six days later he got the swine flu and was on a ventilator within 48 hours. We were one week away from taking the trip of his life and now he was on a ventilator fighting for his life. In addition to the swine flu, he had a viral pneumonia. Dear Son is weak and can no longer cough so colds or pneumonia is life threatening. Instead of having his best birthday, it was his worst and he was on the ventilator for his 18th birthday. He was in the ICU for over three weeks.

We left the hospital on Thanksgiving Day. It seemed like he could breathe on his own however once we returned home, that was not the case. I had to give him round the clock breathing treatments to keep him alive. During that time, he also cried non-stop. I wasn’t sure if he was going to die or what. The doctors couldn’t find the source of the crying so he was hospitalized again in December of 2009 and January of this year until they figured out what the problem was. They finally figured it out and everything was resolved in early February.

Dear Son was unable to go to school for months. In addition, the recovery took a long time. He was unable to sit up for months so we couldn’t reschedule our trip. Finally, in May of this year, we asked the doctor if we could take the trip. He was barely able to sit up for two hours so our main concern was if he would be able to sit up to make the airplane trip.

Fortunately, he was able to sit up for the trip! He got scared on the plane when the plane was moving around for takeoff. He gripped my hand tight and wouldn’t let go. I put my arm around him and told him not to be scared and that it would be fun. I said that the pilot was going to step on the gas and the plane would go really fast. I said that men like the takeoff and that most pilots were men. (Not sure if this is true, lol!) Well, after that, the plane took off and his head went back into the headrest from the take off. He had a big smile on his face and loved it! It was an exciting time!

We had a great time at Disney. We had to limit our activities a bit to just a few things each morning since that was all he could manage. They had an accessible pool so Dad and I were able to take him in the water to relax and then sit him on a beach chair to relax. It was the best trip ever!

The only downside was that he missed his graduation from high school. It was the only time they had a May graduation! Now he goes to a Transition Center, run by the special education cooperative. He attends only two mornings a week since he’s still weak. He loves it and can attend until the age of 22.

By this time, I was determined to make the most of 2010. I love making Halloween costumes so I made him an adorable bed bug costume (complete with a bed and quilt to fit over his wheelchair!) for the Halloween party at school. Needless to say, he was the talk of the classroom!

Since that time, we have been able to avoid the hospital so far other than a small pneumonia in August. I feel so blessed to have another Christmas with Dear Son. The doctors tell me he will most likely die of pneumonia and they don’t know if they can save him anymore. This past year he has lost his ability to move his feet and he can only sit up for a short period of time.

There have been many times over the past few years that we have spent both Thanksgiving and Christmas in the hospital. During those times, I realized just how important those times were, times that I often took for granted. Now I understand that when you have your family around, good food on the table and you have your health, you have everything. Merry Christmas and Happy Holidays.


Dream Mom and Dear Son

Thursday, December 23, 2010

Around the House...

Just a few pictures of the apartment at Christmas. I can't say that I've really been in the mood to decorate this year which explains why some of these pictures look a bit disjointed this year. This past year has been a lot more difficult after Dear Son was released from the hospital last year. In 2009, he was able to go to school and that afforded me more time to get things done. Back then, I was exhausted when there was a three day weekend and I was caring for him 24/7 for those three days. After he was released last Christmas, everything changed and I went to caring for him 24/7 seven days a week, which has taken it's toll. Caring for an invalid 24/7 is very different than watching your children. Taking care of a 190 pound man, is a bit tough at times. A picture of the coffee table and then of the end tables.

I love the sconces when they are lit at night.

A foyer table.

Dear Son was only five weeks old when this picture was taken. It's one of my favorites.

The armoire in the dining room.

The dining room.

I made the centerpiece this year, not sure if I like it. Just added a glass dome to the deer. Regardless, I was trying a few other options yesterday and the dome slipped and broke into a million pieces so I'll have to try something else next year.

A view of the living room. For some reason, nothing seemed to photograph very well this year.

But the best news is that Dear Son has started to move his feet again. After the hospitalization last year, he was no longer able to move his feet, legs or toes for that matter. I worked for a few months trying to help him regain the movement in his extremities. Over the summer, I'd sit him in the his wheelchair, take off the leg/foot rests so his legs would dangle. Then I'd take a giant exercise ball and gently roll it towards his legs and when it hit his legs I would tell him to kick it back. For the most part, I couldn't even get the slighest movement at all from his legs. I used the giant ball in hopes that when I rolled it to him, the ball would hit his legs and perhaps if he moved slightly, it would look like he kicked the ball and help him move. Nothing worked and I was fairly certain he'd never move his legs again. Dear Son has lost so many skills with each hospitalization and with his progressive neurological disease.

Sometime a week or so ago, he was sitting in the rocker/recliner and he moved his foot slightly to rock the chair. He had been unable to do this in over a year. I was thrilled but tried not to get too excited. He did it a few more times over the next week or so. Then the other day, he was trying to get my attention as I sat across with him and thought he'd be funny and kick the Christmas tree. Well, of course, I told him not to do it, sort I was so happy that he moved his feet. He kept teasing me and trying to kick with his leg and actually lifted his leg up and his foot was some three inches off the floor as he tried to kick the tree. He delighted in me telling him not to kick the tree (he likes to be a little bit bad, lol). It was like having the old Dear Son back. He would often tease me by doing something he knew would get my attention and then smiling once he got my attention. It was wonderful to see his personality again. For the record, he didn't knock anything off the tree, but if he did, I'd be excited. If there is anything I've learned in the last nineteen years of motherhood is that it's far better to have a little life in the house than to have a house with no life in it. Children make the world go round and for that, I am grateful. I think 2011 is going to be a good year.

Tuesday, December 14, 2010

O Christmas Tree...

I finally got around to putting up our Christmas tree on Saturday. I just wasn't in the mood to do it sooner although the rest of the house was decorated. Sometimes, taking out the artificial tree, putting on all of the lights, and then all the ornaments can seem, well, like a lot. Gone are the days when I had a tree in every room. In my home, I had a tree decorated with white and silver ornaments in the living room; it was very glam. In the family room was the gold and burgundy ornaments you see here, the guest room had pink and white ornaments, Dear Son's room had teddy bear resin ornaments with sports gear and the master suite had purple ornaments. Each room had a different tree and a different theme and I haven't even told you about the exterior. I had to stop at 5,000 lights outdoors since the circuit breaker couldn't handle any more.

Once I moved to an apartment, I scaled down to just one tree. Fortunately, I had some help from this guy.

You can't help but laugh with help like this. And Dear Son enjoyed watching all of this.

On to the tree. Two years ago, I switched to a slim tree and I love it! It takes up a lot less space and fits nicely into the corner. This is actually my favorite part of Christmas, to sit on the sofa and look over at the tree. I love to light the candle and also the candles in the sconces on the wall. It is beautiful. I'll show you the rest of the apartment later but for now, we'll take a look at the tree.

The theme for this tree is a music theme. It reminds me of singing in the church choir at Christmas. My favorite of course is the, "Hallelujah Chorus". I still sing it in my car all the time during the holidays. The ribbons have musical instruments and there are plenty of gold cherubs each playing a different instrument; all have crystals attached which reflect the light.
Gold scrolls and more crystal ornaments with gold. My favorite ornament to receive are glass and crystal ornaments with gold. When I had my home, I covered my staircase with fresh garland, gold and silver organza ribbon, lights and all crystal and glass ornaments hanging from the garland. It was stunning.

Here are some gold Santas.

Here's some pictures of a few more ornaments.

Here is a little glass church. It's one of my favorites. It doesn't photograph very well however it adds a lot of glamour to the tree with the lights shining through. This was one of many of the ornaments I was given over the years.

Some velvet fans and other musical themed ornaments.

I love these stained glass ornaments; reminds me of church.

More ornaments.

And some angels. The lack of a face is a reminder that angels can be anyone.

One of my favorite ornaments is this beaded sachet. Dear Son's babysitter gave it to me many years ago. She said it seemed "like me". She was right. I love it.
A picture of the entire tree.
I tried something new this year and added a mirror behind the tree. I am not sure it works. I love the of the mirror reflecting the tree however I think the mirror needs to be larger and wider. I tried to google tips on decorating with a mirror for the Christmas tree but couldn't seem to find anything.

And finally, one last picture of the tree.

I hope you enjoyed our Christmas tree.

Friday, December 10, 2010

Mittens and Other Homemade Gift Ideas for Disabled Children and Adults

It's something most of us don't even think about when we put on our gloves on cold days. But for some disabled children and adults, finding gloves or mittens is a nightmare. The problem is that for children who have low tone or no tone in their hands, it's almost impossible to put gloves on their hands. The reason is that the fingers don't have any tone and you have to try to push each finger into the slot without the other ones falling out. It just doesn't work.
The work around is mittens. The problem with mittens is that often times their hands can be fisted and you have a similar issue in trying to put the thumb in the mitten and the rest of the fist in the mitten. The down side is that you have to find mittens that are wide enough to go over their fist since their hands can be fisted.

When Dear Son was younger, this was really challenging. I explained the situation to one of his doctors one time. She was a physiatrist (physician who specializes in physical medicine and rehabilitation) and who had five boys of her own. She often had practical tips as well as medical advice. When I explained my dilemma, she suggested wool socks. Brilliant! At least that's what I thought initially. I mean, when it came right down to it, I didn't want to send Dear Son to school with wool tube socks on his hands.

Instead, I just purchased larger mittens than what he'd normally need as a child. Purchasing the next size up, meant I could get the mitten over his fist. This solution worked until he became a man and then well, men don't wear mittens so they don't sell mittens for men. And thankfully so!

Some people suggested ski gloves/mittens. The problem with those is that the area that secures the wrist is typically tighter which makes them hard to get on so it really wasn't a viable solution.

As a man, I purchased gloves for him.

The down side of the gloves is that his hands are fisted so the rest of the glove just hangs down like a Halloween hand. It works but it's not great. That was until one of my blog readers offered to make Dear Son a pair of thumbless mittens. These mittens are shorter than regular mittens so they don't flop over. More importantly, all of that empty space isn't left at the end of the mitten which seems to get cold. She knitted wool, thumbless mittens, that are shorter than regular mittens but have a wider wrist band so it goes over Dear Son's hands easier. It works beautifully!

I secure the mittens to his coat with mitten clips so they don't get lost. I realize that using mitten clips on a man isn't well, manly, but we have to use a bit of common sense and do practical things when our kids are disabled.

And finally, here are picture of the new mittens on Dear Son. I tried to photograph it with his coat on but the photograph came out too dark so I think this photo shows them better. Now he has mittens that fit his hand, but don't allow a lot of the mitten to hang off and look strange. Thank you Anne for such a great solution!

I happened to mention that Dear Son's new mittens arrived when Dear Son got off the bus. I explained it to the bus driver and Dear Son's school aide (he rides the bus with Dear Son) when he got off the school bus today. The aide commented that many of the students in the classroom could use mittens like this.

So, that being said, I thought I'd suggest a few items that would be practical and helpful for severely disabled children/adults. If you sew or knit, these might be some possible gift ideas:

  • Mittens-Great for children and adults with low tone whose hands/fingers are fisted. You'll need to take their wrist measurement and their fist measurement in order to make them. In this case, my blog reader friend made Dear Son's thumbless mittens in a black washable wool. She had me take the measurements and send them to her and then asked what color I would like. I chose black since Dear Son has a green coat with black accessories.
  • Bibs-When Dear Son was a baby, he had poor head control and I needed pullover terry cloth bibs. It was nearly impossible to use bibs that tied behind his neck and as he grew older, terry cloth bibs that secured with velcro worked fine. Bibs that tied were difficult to use since the infants head rolled and moved around and also if they were floppy, meaning that the child didn't have any tone in their torso, it was hard to manage. I mean, it was tough to hold the child securely, hold their head and tie a bib around their neck. You just don't have enough hands. The reason it's helpful to make the bibs is that as they get older, the baby bibs no longer fit around their neck since they are made for babies. If your child has oral, motor issues, feeding can be messy and you need a terry cloth bib to catch any drips and to wipe their mouth. Sometimes, it's a lot to manage when they don't move or sit the way regular kids do. The only other requirement is that you make them in colors that are easy to wash. I liked white or pastels since I could pop them in the washer and not worry about them. I found bright colors like orange or red to be less desirable since I'd be worry about bleeding or finding a load of like colors. I like lighter colors too since I want to see any dirt or see if it's clean.
  • Hospital Gowns-This would be a great idea for a little girl or young boy who spends a lot of time in the hospital or who needs surgery. I am thinking about making a special hospital gown to help them get through a surgery. Maybe a little boy gets a Superman hospital gown and then gets a little prize once the surgery is done. He gets to wear the Superman gown because he's so brave. Maybe a princess hospital gown for a little girl and when she comes out of surgery, she gets a little star that velcros and fits in the pocket. It's all about doing a little something to cheer them up and help them feel special and a little brave when they are scared. You'll want to make sure the shoulders snap on and off so it's not difficult to remove with IVs , etc. and you'll want to make sure the gown is washable and won't bleed when it washes. As a mother, I know these gowns will get messy and you'll need something that can be washed in hot water and dried.
  • Capes/Ponchos-These ponchos are great for the spring, fall and winter. They come in two weights. I've seen them for spring and fall, both with a thinner fleece lining and then heavier ones for winter. The reason they are great is that often times, it can be cold trying to get the kids on/off the school bus or sometimes, when it's raining, it's nearly impossible to hold an umbrella over the wheelchair and keep the child and you from getting wet. The thing you want to do is to have the cape/poncho be able to fit around the back of the chair and be able to secure it. Snaps might work better than velcro since when you wash the cape/poncho, you don't want the velcro sticking to the other clothes. I understand there are patterns for this type of thing but since I don't sew, I am not the person to ask. For color, I always prefer a cape that matches or goes with the wheelchair. For example, Dear Son's wheelchair is green and black so I try to purchase his outwear in green or black to match.

So the bottom line is that when looking at gifts for the holidays, don't forget that homemade gifts can really make difference for special needs/disabled children and adults. If you don't know of any children, but would like to make some, contact your local school and ask for the special needs teacher. I am certain they would love to have some mittens for these kids.

And finally, thank you Anne for such a lovely gift for Dear Son. The mittens are just perfect and look just wonderful!

Wednesday, December 08, 2010

How We're Staying Well This Winter

Today was pretty cold here in the Midwest. I sent Dear Son to school today and as he pulled the wheelchair on the bus, the bus driver casually mentioned that he was surprised that I was sending Dear Son to school today. He's been driving this route for some ten years or so and knows Dear Son fairly well. He asked if there was a particular temperature that I wouldn't send him or what my rules for sending him to school were. I told him that as long as he's healthy, he can go to school. Dear Son loves school and as long as he's not sick, he can go. I mentioned that I've been having great results with organic, virgin, coconut oil in preventing illness and he wanted to know exactly what I was doing and how I used it for Dear Son. This particular bus driver knows all of the kids, knows their issues and has seen a lot of kids when they are well and when things aren't going so well. Plus, he's been driving Dear Son on the bus for some ten years.

As you are aware, Dear Son is only allowed to go to school two mornings a week, first because it takes a lot of his energy and second, due to pneumonia season. I've had conversations with Ped Pulmonary Doc and Ped Neuro Doc regarding his attendance during pneumonia season. Initially, his Ped Pulmonary Doc did not want him to attend school at all through March or April, to prevent pneumonia. Dear Son has a progressive neurological disease and is no longer able to cough or clear his airways. Also, they really don't know if they can save him anymore, should he get pneumonia; both doctors have told me he will most likely die of pneumonia. On the flip side, Dear Son is pretty outgoing and really loves going to school. He is so happy and you can tell it does his soul good. The key is trying to find the right balance and I don't know that you ever really know the right answers. I am fine keeping Dear Son out of school however the reality is that he loves it and therein lies the dilemma.

This year, I was determined to do something different. Earlier this year, I read about organic, virgin coconut oil and the health benefits of it. It's been promoted to cure just about everything. I've read books on it however when I looked at the scientific data to support such claims, most of it was non-existant or the studies were so old that I simply discounted them. I typically want to see a scientific study of two years or less, that is statistically valid, before I get too excited. I have seen a small study on pneumonia and another one where virgin, coconut oil was used in the control group in the ICU for patients with pneumonia on gtube feeds and the control group with the coconut oil had fewer days in the ICU and recovered faster. But still, I remained skeptical.

Despite that, I started trying it in late June for cooking and other uses and was so impressed, I started trying it for all of the uses they recommended. There were varying results but in some areas, the results were flat out outstanding and amazing. In addition, I had been reading about the organic, virgin coconut oil on different organic blogs. It's been used in everything from cooking to personal care. Organic, virgin coconut oil is anti-viral, anti-microbial and anti-fungal, but does it work? We've been using it for a few months now and I've had great results in a few specific areas: preventing colds/flu, healing Dear Son's pressure sore, as a massage oil for his legs/feet. I keep a separate jar for each use.

So here's what we are doing to stay well this winter. We have done most of this every year so the only really new things this year is the organic, virgin, coconut oil and the nebulizer treatments.
  1. Now Foods Organic Virgin Coconut Oil-I give Dear Son 1 tsp. each day via his gtube and have been doing this since mid-October. I place it in a cup and then add very hot water (cold water will solidify the oil) to melt the oil. I use the syringes to administer. I then flush the coconut oil with warm water. What you need to know about this is that the coconut oil will degrade the rubber part of the syringes and will also remove the writing on the syringes. The organic, virgin, oil is food grade meaning it's for use in food so there are no worries there. (When using it in his gtube, the tip of the syringe will be slippery due to the oil and may make the feeding bag tubing slip out of the extension tube. For best results, wipe the tip of the syringe and wipe the tip of the feeding tubing, then tape the feeding tubing in place. Otherwise, the feeding tubing will slip out of the extension tube and the formula will leak all over. ) In addition, if Dear Son sneezes, I give him one tablespoon of the coconut oil, via his g tube. Typically, this will clear up any symptoms but if they persist, I keep adding a tablespoon at a time. In late October, he seemed like he was getting sick and I kept treating it for a few days with the coconut oil and it never materialized. Then I went back to our maintenance dose of 1 tsp. I also take it and when I started getting a sore throat, I upped the dose to 1 tablespoon and then added more as needed until it went away. On a day when I felt I was getting sick, I may end up taking three tablespoons a day but the next day, I had no symptoms. The key is to take a tablespoon any time you feel you are getting ill. I read on another organic blog that they take 3 tablespoons any time they feel any symptoms of a cold or flu coming on and the woman's husband takes a jar with him when he travels. The key is that you want the organic, virgin coconut oil, not the refined stuff. The organic oil is more expensive, and should have a light, coconut scent. The refined stuff is odorless and will not give the same results. I should also mention that you need to go slow with the coconut oil. Most books recommend 3 tablespoons a day; I tried one tablespoon and had an upset stomach. I tried it on and off and finally settled on 1 teaspoon a day and started it in mid to late October. Once I was able to manage that, it was easier to add larger doses. I should also mention that the organic, virgin, coconut oil also gives you energy so you don't want to take it late at night or you'll be awake. I started giving it to Dear Son in the morning before school and it not only gave him energy but he no longer slept at school. I also ran the coconut oil by Ped Pulmonary Doc-since it was via the gtube, she had no concerns. If it were given orally, you'd have to be careful if you had a child that aspirates but honestly, taking it with food or in hot beverages, should not be a problem since it just melts. You can even have it on toast instead of butter.
  2. Nebulizer treatments. I give Dear Son one nebulizer treatment every day. Ped Pulmonary Doc recommends two treatments a day however I am just not seeing or hearing any breathing issues. Dear Son does not have any congestion of any kind. If he does, then I increase the treatments, otherwise, I'll continue these treatments once a day.
  3. Positioning (sitting) Dear Son up in a chair. Dear Son has difficulty sitting up and lies down most of the time since he is easily exhausted. I make it a point to get him up twice a day for a few hours each time, as much as he will tolerate, to help clear his airways. Most of the time, he is unable to sit up more than 2 hours at a time; some days he can sit up as long at three hours. He is always side lying in bed and I make certain to keep the head of the bed up as well as turn him over every two hours or so. This helps his breathe better and prevent pressure/bed sores.
  4. Keeping the house warm. I keep our home 72-73 degrees or so. Dear Son has always done better with a warmer house and that is just the way it is. In the summer, he requires air conditioning to breath better and in the winter, he needs it warmer than normal to stay well.
  5. Dressing warm. A lot of this is common sense but it works. Around the house, making sure he has on warm, flannel, pajama type pants and a tshirt and mock turtleneck. When he goes out to school, he has on a tshirt, turtleneck, cotton zip up sweater, down jacket, gloves, hat, scarf to cover his mouth and blanket over him and the wheelchair to help stay warm.
  6. Hand washing. I didn't think to include this at first, since it goes without saying, however I am a diligent hand washer using soap and water. I wash my hands before and after tasks for Dear Son and wash them when I come home from running errands. I don't care for liquid hand sanitizers however since I prefer soap and water over that.

In addition to what Dear Son does, I had to increase everything I did this year as well. I use the coconut oil to prevent illness, eat a lot of fruits and vegetables plus green spinach smoothies to stay well as well as making sure I do the same things as Dear Son-dressing warm, not running out to the school bus in sandals, no coat and yoga pants as I normally would do in November, lol. So far, it's working.

As you can see, none of this is very unusual, other than the organic, virgin, coconut oil. At this point, I have nothing to lose and it's working very, very well. Most of this of course, is common sense, but I've been religious this year about doing a little bit of everything to keep him well.

As for school, I told the bus driver that as long as Dear Son's doing well and doesn't show any signs of illness, he can go to school. If the weather gets too extreme, of course I can keep him home but otherwise, he can go.

Note: I have also found the organic, virgin, coconut oil to be great for other things. I found it to be the best anti-wrinkle cream ever. It makes your skin look amazing and your skin will feel ultra soft. Eliminates fine wrinkles in just days, versus weeks. Also, it's an excellent moisturizer under make up. It's great to prevent colds/flu. It's amazing to heal pressure sores, like Dear Son's. Excellent massage cream. I also used it this summer when I burned my lip on some food. It took the pain away instantly and my lip did not blister or turn red and it only took one application. You can purchase Now Foods Organic Virgin Coconut Oil at Whole Foods.

Friday, December 03, 2010

Are Children with Seizures at Risk for Pertussis?

This morning I received an email from the school district regarding Pertussis and the Norovirus. Apparently, in our county there are cases of both. As you might imagine, my first concern was for Dear Son. Both Pertussis and Norovirus can be life threatening for Dear Son for two reasons: 1) he is unable to cough and clear his airways and 2) if he were to vomit, he is unable to roll over so if he were to roll back onto his back and vomit, he’d choke to death. In both cases, the biggest concern is aspiration pneumonia.

Of particular concern regarding Pertussis is that Dear Son has never received a Pertussis vaccine. Dear Son has recieved all of his vaccines however when Dear Son had seizures at birth and at that time, the Pertussis vaccine was never given for infants or children with seizures. Instead, they recieved the DT and not the DPT vaccines; as a result, he has never been immunized for it. I would assume this would put him at a greater risk for Pertussis. I pulled Dear Son’s immunization records to verify if he had ever received the vaccine just to be sure and he had not.

Specifically, my concern was that since Dear Son has intractable seizures, a progressive neurological disease and can not clear his airways; as a result, he is at high risk for pneumonia and also respiratory depression from anesthesia. Given his history, I had a few questions:

  1. If Pertussis was a larger risk for seizure kids who have never been vaccinated?

  2. If they were seeing any Pertussis cases in the ICU at Big Academic Medical Center?

  3. If he should he continue going to school even if there aren't any cases due to his history?

Since I was concerned, I thought I’d contact the Chief of Pediatric Infectious Diseases (ID) at Big Academic Medical Center (BAMC). I had some questions and figured he would be my best resource for general information regarding Pertussis since Dear Son would most likely end up in the ICU if he came down with something. I wasn’t sure if I should contact Dear Son’s Pulmonary Doc since Pertussis is a respiratory issue or his Neuro and decided to start with ID since that is his specialty and due to Dear Son's complex medical history.

Prior to contacting him, I called the classroom nurse to see if there were any cases of Pertussis or the Norovirus at the Transition Center. Dear Son finished high school and now attends the Transition Center until he is 22 years old. This Transition Center consists of two classrooms, of around 20 students total, and is located in a corporate strip type office complex. This is a good thing since he has less exposure to other kids who may be ill. At the present time, all of the staff, including his teacher, the head of the Transition Center and the school nurse are supposed to notify me of any illnesses in the classroom so I can keep Dear Son at home. The good news is that there weren’t any cases at the Transition Center. I contacted the Head Nurse of the Special Education Cooperative in the district, which covers the elementary, middle and high schools to see if there were any cases at the high school or in the district and so far there were not. Of particular concern however, was that even though all of the kids are healthy, many of them have a history of seizures and may not have had the Pertussis vaccine as well. So essentially, we have a subset of adolescents who are at a higher risk for Pertussis, especially if none of them have had the vaccine. That information is private however, so I have no way to know.

I sent an email to Dr. A, the Chief of Pediatric Infectious Disease at Big Academic Medical Center asking him some general questions regarding Dear Son and Pertussis. Specifically, I wanted to know if they had any Pertussis cases in the ICU currently and also if they were seeing an increase in Pertussis cases for children who had a seizure disorder and who have not received the vaccine. He responded quickly and asked if he could call me.

We had a nice conversation and he said that currently, they do not have any Pertussis cases in the ICU. I was glad since I know that once they start seeing cases pop up, it presents a bit more of a risk since our county typically mirrors cases in that county. We also talked about the Pertussis vaccine as it relates to children with seizure disorders. He explained that for a long time the Pertussis vaccine was not given to children with seizure disorders since if was assumed that if the child got a fever related to the Pertussis, it would bring on more seizures. A review of the data did not bear that out however. You have to keep in mind that Dear Son is currently 19 years old and the consensus at the time was the Pertussis vaccines were not given to children like him.

He went on to explain that the Pertussis vaccine that is given today is vastly different from the one that was given years ago. Back then, it was a whole cell vaccine (dead pertussis) that was given. Currently, a different type of Pertussis vaccine is given. It’s now an Acellular Pertussis vaccine, where they use purified proteins of the bug. The new vaccine is much safer for children.

While we were on the phone, I also talked to him about vaccines in general. I must say that the more I read, the less comfortable I feel about vaccines in general. On the flip side, Dear Son has some significant health issues and I can’t afford to make a wrong decision where his health is concerned. I said that it’s been my experience when I talk to a traditional physician regarding my concern over vaccines, they seem to feel that vaccinations are better than not being vaccinated however these are traditional physicians and not alternative based physicians. He talked a little bit about vaccines and then referred me to a book written by a friend of his, Dr. Paul Offit*. Dr. Paul Offit wrote the book, “Autism False Prophets” where he defends vaccines. Dr. A (Section Chief at BAMC) used the example of people’s concern over mercury in vaccines and it’s link to autism. He said that mercury was removed from vaccines however the scientific data showed that autism cases actually increased after the removal, not decreased. He went on to say that the amount of mercury that was in the vaccines, was less than that in a can of tuna fish.

I asked that since Dear Son has a progressive neurological disease if the Pertussis Vaccine was recommended. He explained that there isn’t any right or wrong answer. It can be done or you can choose to skip it, and that it is a personal choice. He also referred me to a Nurse Practitioner at Big Academic Medical Center; she holds special immunization clinics and will review the data with you and answer your questions to help you make a decision regarding a particular immunization for complex medical cases.

He also referred me to the National Network for Immunization Information. This website can be found here. He said it was an excellent resource for immunization information. I checked out the website and it provides science based information for healthcare professional and parents alike. If you click on the category heading at the top labeled, “For Parents”, it will provide you with information and contraindications for each vaccine. I found this information helpful.

I am fortunate to have such good resources for Dear Son. It is always nice when you can contact a physician and get good information. In the end, I’ve decided to follow up with Dear Son’s neurologist. It would be too difficult to transport Dear Son to Big Academic Medical Center for a clinic visit to go over his history, all of which Dear Son’s Neuro already knows. He is a good pediatrician, as well as pediatric neuro. Since Dear Son has intractable seizures and a Progressive Neurological Disease, both of which are contraindications for the Pertussis vaccine, he’ll be our best resource to determine the next steps regarding whether Dear Son should get the Pertussis vaccine and also whether or not he can continue to attend school two mornings per week. At least for now, I have more information about the Pertussis vaccine as it relates to Dear Son.

12/6/10 Update: I contacted the neurologist's office today and Dear Son's Neuro does not recommend the Pertussis vaccine. The reason is that if he gets a fever, it would lower the threshold for seizures (Dear Son has intractable seizures, has a VNS and is on multiple seizure meds.). It's the only vaccine he does not recommend. We will follow his advice.

*Note: Further information on Dr. Paul Offit can be found here. He is the Chief of Infectious Disease at Children's Hospital of Philadelphia and many consider him the most well paid spokesman of the vaccine industry; he is also the co-inventor of a vaccine against Rotovirus.
Photo is of Dear Son after school this morning.

Sunday, November 28, 2010

Does Your Hospital Menu and Foods Fight Disease or Contribute to Them?

There was an interesting article in Newsweek regarding food and social class in America. Eating well, is becoming more expensive and as a result, can be considered a luxury, at least if you are poor. If you are comfortable money wise, you probably don’t give it much thought however if you are poor or have less resources for food, good, healthy food is considered a luxury item. More important is the link between food and good health. If you subscribe, like I do, that food is your ticket to reversing disease and good health, being able to purchase organic foods really is a luxury item. On the flip side, having to purchase poor quality food (non-organic fruits and vegetables and/or factory farmed meat and poultry) is a quick ticket to ill health and therein lies the real dilemma. The real issue with food and health is that we messed everything up in our quest for cheap food. In the quest, more pesticides/chemicals were used and if you’ve seen the documentary, “Food Inc.”, you know precisely what I am talking about.

As the article states, being able to afford really good food is a bit of a class definer, whether you like it or not. Let’s face it, being able to spend $150 on an organic, pastured, heritage turkey was probably not in a lot of people’s budget this year. If you enjoy organic food, you have most likely tasted the difference between organic and non-organic food and understand the nutrient differences as well. But not having all of the hormones and antibiotics in the poultry makes a difference as well; you have to wonder how those things contribute to disease. After all, you are what they eat. But being able to afford really good food is also becoming a "health definer".

I found the article interesting because it’s something I have been thinking about a lot for the past year. As a single mother, I work part time to care for Dear Son. There’s no other way to really do it, now that he is total care. As a result, I live on a very tight budget. I buy the very best food that I can and consider organic food not only as a luxury item but as a ticket to great health. Due to Dear Son’s fragile health, and since I don’t have a great health insurance policy, I have to work hard to remain healthy. I divide my grocery store dollars between Whole Foods and another local chain. I make nearly everything myself and you’ll never find a box of anything in my freezer. I do this because I want to know what’s in my food but also so I can spend more money on high quality, organic food. I have eliminated other items in my budget so I can eat higher quality foods. Certainly there are some weeks that I can’t buy as much organic as I want, but I have some foods that are non-negotiable in terms of buying organic. Other weeks, I just buy less or do whatever I can to make ends meet.

Over the years, I gave up different things, In the beginning, I avoided any foods with artificial sweeteners, msg and high fructose corn syrup then I eliminated processed foods, and genetically modified foods and oils (canola, sunflower, safflower, soybean and vegetable). I eat whole foods and whole grains and aim for hormone free, organic, pastured beef and poultry fed without GM soybeans; this is very hard to find and I am still researching farms to find it. In addition, I’ve removed nearly everything with BPA in my kitchen and have eliminated nearly all canned foods. I am a firm believer in foods that reverse disease. I still have more changes I’d like to make but they take money and therein lies the dilemma. The problem is that I know that eating well prevents and reverses disease however what really bothers me is that I can’t afford to eat like I want to, at least not now. While Whole Foods isn’t the end all, it is the best health food/type grocery store on a mass level. If money weren’t an issue, I’d eat differently. I’d buy a share of a cow and drink raw, unpasteurized milk. I’d purchase organic bison from farmers who fed their animals a regular diet or organic diet excluding soy, that took the time to feed the animals right until it was time to slaughter and then used humane methods on their animals. I eat all organic fruits, vegetables, dairy, grains and nuts and purchase them from local farms. I’d eat organic beef and poultry only from pastured animals. It also drives me crazy when people who can afford to eat better, don’t. I mean, if you can afford to eat organic, why wouldn’t you? There are weeks when I would love some organic brussel sprouts but instead I have to purchase the non-organic ones.

Even more important, is that I’d love to feed Dear Son differently. I’ve tried pureeing fruits and vegetables for him however it clogs the feeding tube. Without a high powered blender, like a Blendtec or Vita Mix, I can’t get the puree smooth enough for tube feedings.
My day after Thanksgiving turkey sandwich made with factory farmed turkey, organic spinach, homemade bread and an organic banana.
What is most troublesome about food in America is that eating well or eating really healthy, costs money. I consider it a luxury item for sure. This Thanksgiving, I ate a regular store bought turkey but my heart was set on a heritage, pasture raised, organic bird. I purchased the store bought turkey because that is what I could afford. Of course, I couldn’t stop thinking about the conditions the animals were raised, how they were most likely bred to have more breast meat, when I paid only $.48 a pound; yes, I know turkeys are a loss leader this time of year, but still. I cring at the thought that it most likely was treated with hormones or antibiotics and wondered how that might affect me. A pasture raised heritage turkey on the other hand, could cost up to a half month’s worth of grocery money, depending on the size and farm it was purchased from. I am one of those people that spend my free time researching farms, how the animals are raised, finding out what exactly the animals are fed and want to know the time to slaughter (the longer the distance to slaughter stresses the animals and hence affects the flavor of the meat). I research the eggs I buy, the milk I buy, etc.

If you really believe that food reverses disease and that food is your ticket to good health, being able to afford organic food and good food is definitely a luxury item since it costs more. Some people try to get around it a bit by paying attention to the “dirty dozen”, which is a list of fruits and vegetables that have the most pesticides or chemicals used and that somehow, fruits and vegetables that aren’t subjected to heavy chemicals can be purchased non-organically. Some new studies however show a vast difference in the nutrition between organic and non-organic fruits and vegetables. For me, this is important but equally as important is taste, and when I purchase an organic sweet onion, the flavor is amazing as opposed to a non-organic one. While I don’t notice that in all organic foods, for some fruits and vegetables, like organic bananas and organic onions, the taste is significantly superior and I have to believe the nutrition must be as well.
Underlying the article and the cost of food is the real issue of health. I have been disturbed for some time over the quality of the food at Big Academic Medical Center. On occasion, I’ve had parent trays. Parent trays are appreciated since the refrigerators in the hospital rooms tend to freeze the fruits/vegetables, regardless of the setting. I’ve given up trying to bring my food down, since the refrigerators are useless and purchasing meals at an on-site restaurant is not budget friendly, especially for longer hospital stays. As a parent, I select my meal from the menu and being a children’s hospital, the menu is geared towards kids. One of the most striking things about the menu, is that you can’t find any fruit on the menu. Can you imagine that? That is, unless you look under “desserts”. I searched high and low the first time I saw the menu looking for fruit because I couldn’t believe that it was non-existant on the menu. So under dessert, you can find things like a banana. Yes, a banana is considered dessert and not a fruit, at least at this Top 100 Hospital. I suppose if we called a fruit a “fruit” maybe kids wouldn’t eat it. The menu also has some heart healthy options, none of which I would ever remotely consider “heart healthy”.

If you want lettuce or greens for a salad, you won’t find any spinach or romaine lettuce. The only lettuce on the menu is iceberg, which as you know, is practically devoid of any nutrition. Now I understand that they may not be able to afford to have all organic items, but I would hope that there would be some fruits and vegetables with a higher nutritional profile. And yes, I realize these are kids but that doesn’t mean we shouldn’t offer higher quality food.

I guess what really bothers me a lot about Big Academic Medical Center is this. We go there because there are world class physicians that provide high quality healthcare and do research accordingly. However, there seems to be a large disconnect in the whole wellness category; on the one hand, you have world class physicians to fight diseases and then you have a hospital menu that contributes to them.

If you believe like I do that food prevents and/or reverses disease, then wouldn’t you expect that the menu would reflect that? Here’s what I’m thinking. When you are in the hospital for an infection, I’d expect a big spinach smoothie loaded with fruits and antioxidants. Instead, there are no fruits with antioxidants in them; there aren’t any blueberries, strawberries, raspberries, organic or otherwise on the menu. I am certain this is a cost issue for sure. Instead, you can get a banana or an apple. You can though, get milk in different colors and any kind of kiddie sugary cereal the kids want. If you believe that refined sugar lowers immunity then it would seem that foods with refined sugars would not be allowed on the menus. Somehow, disease prevention and using food to cure disease, doesn’t coincide with the hospital menu.

Nestle Compleat Modified Formula

On the topic of food and chemicals, are the infant formulas. Most of these formulas have 100% of the RDA and yet are in a base of corn syrup. I worked with a nutritionist at another Big City Children’s Hospital to find a better formula for Dear Son. I told her I wanted a “natural formula” and one made from “real food” but I wasn’t sure anything like that existed since formula isn’t really a “real food”. She recommended a “real food” tube feeding formula, made with traditional foods. It provides nutrients found in real food and contains chicken, peas, carrots, tomatoes and cranberry juice. All of that is listed on the front of the label. It sounds good and it costs about 50% more than the standard formula. It sounds great until you read the back of the label which lists the ingredients: the first item is water, the second is corn syrup, followed by another sugar and then the chicken puree, the tomato puree and then canola oil (which is probably genetically modified). The cranberry juice is made from concentrate. Is this really the best we can do for our kids? (Personally, I don't ever think that any nutritionist working at any children's hospital should ever recommend any formulas with corn syrup in them. Then of course, we wonder why the kids gain weight on them!) And yes, the formula comes in a can, which most likely has BPA in the can lining. And if we go down the BPA path, we can add the plastic tubing, the plastic feeding bags, plastic syringes, plastic extension tubes, all encased in plastic, along with plastic covered diapers and plastic gloves. Now we are completely off topic.

The bottom line is this…if you want to be healthy, you have to eat well. And the reality is that the more educated a person is, the better they can eat and more often than not, they have a better job to do that. And therein lies the great divide. While people with fewer resources can make better choices, the reality is that they will never be able to eat really well. And now that our food has changed, with an emphasis on creating “cheap, factory farmed food”, we now have changed the paradigm. To eat well and to prevent disease costs money. And for those who can’t afford to pay, they may pay an even higher price with poor health and more disease. And as the paradigm shifts, while more money won’t always translate to better health (meaning they have to want to buy healthier food), not being able to afford better food will make it tougher to achieve good health. In the end though, I think we should expect that all heathcare providers should provide food that helps prevent disease. Now, if only we could all agree on what that food should be.

Thursday, November 25, 2010

Happy Thanksgiving~What I've Learned Over the Years

This year, we'll celebrate Thanksgiving at home. Last year, Dear Son was in the hospital recovering from the H1N1 and a viral pneumonia. It was a rough month with Dear Son on a ventilator and then the long, long recovery. Last year, I watched the Food Network on television at the hospital. Dear Son was released that night however for the next few days, things were rough. Although his oxygen saturations were adequate at the hospital, they dropped significantly when he got home. For three or four days, he struggled to breathe and I did breathing treatments manually every two hours or so. It was a hard time for both of us. The days and weeks after that, he'd cry non-stop in pain but we didn't know why. He was hospitalized again in December and then in January until they located the source of his pain-a pnematosis (free air in the lining of the bowel wall); while it shouldn't have caused pain, it did. It took months before he was able to sit up and it wasn't until May of 2010 where he could sit up long enough to take a plane ride to Disney for his Make a Wish trip.

We've spent a few Thanksgivings in the hospital over the years. And for a long time prior, I admit to taking many of them for granted. After all, there was plenty of food, all of the family there and of course, all of the fun. Having spent last year in the hospital with Dear Son, and many others, I have a new found appreciation for Thanksgiving. I think my worst Thanksgiving, was a few years back, when Dear Son was hospitalized, all of the restaurants were closed, and I ate a ham sandwich out of the vending machine, since the cafeteria was closed at well. At that time, I remembered all of the wonderful holidays with delicious food and all of the fun.

Sometimes, it's easy, when things are going well for people, to overlook all of the blessings they have, myself included. My perspective is a bit different now. After nineteen years of seeing the world from Dear Son's eyes, I look at Thanksgiving with more grace. I thought it might be nice to count the ways, we are blessed.

You know you are blessed when:
  • You can spend Thanksgiving at home. There are many adults and children who will spend Thanksgiving in a hospital. Some of them won't survive. We are blessed to spend it at home this year.
  • There is plenty of good food to eat. Food banks are overflowing with people in need of a good meal. I like to donate to a mission in our community for the holidays.

  • You can eat and swallow food. Dear Son has been on gtube feeds since 2006. That doesn't mean he doesn't miss it. He can still smell the food and loves to cook. Sometimes I give him a little taste, about the size of a dime, if that. He can't swallow anymore and can't manage food by his mouth.
  • You can have a conversation with your kids. I've never been able to have a conversation with Dear Son since he can't speak. I'd love to know what he was thinking and feeling.
  • You have all of your family members at the table. I lost my sister to colon cancer in 2009. I never dreamed I would lose her so young.

And finally, don't forget to make room at the table for the disabled. I know when we would sit down at the table with extended family, space was tight and it was always easier to feed Dear Son off to the side in his wheelchair or feed him at the table before everyone was seated; this was when he could eat by his mouth and not via a feeding tube. Now I know that was a mistake. When I sat in the living room with him, I could hear everyone laughing and having a good time at the table and it wasn't the same. It was then that I realized the importance of socialization at the table. Now, I make sure to sit Dear Son in the wheelchair at the table and enjoy it with us.

So today, I'll set a pretty table, pull Dear Son's wheelchair up to the table, and be thankful for all of the food we have and for the family who will celebrate Thanksgiving with us today. I will also be thankful for all of you, who always support us and pray for us. Your prayers for my Dear Son mean a lot.

Happy Thanksgiving!

Note: Photo of Dear Son was taken two days ago while he was napping. He is healthy and doing well this year. Tablescape is my Sugar Maple tablescape. You can see more photos here. That is also today's tablescape for Thanksgiving.

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