Thanksgiving Prep and New Recipes

This year, I am tweeking my Thanksgiving menu a bit. Since it's easier to stay at home and cook versus trying to get out somewhere with Dear Son, I'll be cooking at home for four people. While I am still serving the same favorites that I do every year, I have decided to try two new recipes and change up the turkey. Whatttttttttttt???? You heard that right...the theme this year is an easy, breezy, lip smackin' Thanksgiving meal.

Let's revisit my Thanksgiving menu and talk about the normal preparation. My typical menu goes something like this:

• Whole Turkey cooked in my Showtime Rotisserie




• Sweet Potatoes




• Broccoli




• Grandma's Homemade Stuffing Recipe




• Rachael Ray's Apple Crisp with Vanilla Ice Cream
  

This year, I am doing a few enchancements:

• Switching to all organic food when possible.




• Changing from cooking a whole turkey to cooking turkey breasts.




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  Making my own cornbread using the Neely's Honey Cornbread Muffin recipe for my homemade stuffing recipe. Update: I made the Neely's Honey Cornbread recipe tonight and added 1 cup of organic sweet corn off the cob that I got from the farm this summer. I chopped it in the food processor and added it to the wet ingredients. I baked the cornbread in a 13 x 9 pan for 25 minutes (you could go a few minutes less). I knew something really special was going on when the smell of the fresh sweet corn permeated my kitchen while it was baking. After it was done, I tried a small piece with some organic butter. It was amazing. Delicious. Will never make any other cornbread recipe again. Thanks Gina and Pat Neely!



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  Trying a new five star Apple Crisp recipe by the Neely's. I've never tried Pat and Gina Neely's recipes before so I am anxious to see how I like them.

Let's see what this looks like.

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  Instead of cooking a whole turkey, I'll be cooking turkey breasts. After all, that is the part that I like best and truth be told, I don't care for dark meat, the legs, the skin or anything else. I know, I know, a freak of nature, but that's just the way it is. I love turkey breast! Anyway, in this month's House Beautiful Magazine, Tyler Florence talked about cooking turkey breasts as opposed to cooking a whole turkey. In it, he says, "Roasting a whole turkey to get a perfectly cooked breast is the equivalent of cooking half a cow for a nice filet mignon." I couldn't have said it better, so out with old and in with the new. We are trying it this way for 2011. In the article, he actually has you take a turkey and cut out the backbone, then cook it flat. Actually, if truth be told, one of the reasons I am trying it this way is because it's just so darn simple. I have a Breville Smart Oven, which is a countertop convection/toaster oven and it cooks turkey, chicken and beef amazingly well. I got this oven as a gift from my sister last year and make everything in it. It turns out fantastic and is easy to clean. Who doesn't want easy on Thanksgiving? Last year, I was reading through the reviews on the oven and people stated that the only thing they didn't make in the oven was a turkey so I decided to make turkey breasts in there and they were amazing. Typically, I cook all organic meat and poultry in there and it turns out great every time. The organic chicken not only cooks fast, but it moist on the inside and yet the outside is moist as well and not dry. Fantastic. So this year, I purchased turkey breast to cook in there. Yes, I could have purchased a whole turkey and removed the backbone but then I'd still have a whole turkey, lol. Instead, I decided just to purchase the turkey breast. One tip is that if you like, you can purchase the turkey breast in a bag; Butterball makes them as do a few others. However, instead of cooking the turkey breast in the plastic bag, just thaw it in the refrigerator two days ahead of time then remove the plastic bag and cook the turkey breasts on a grill pan in the convection oven. Due to concerns over BPA, I would never, ever, cook anything in the oven with a plastic bag. Certainly, an organic free range whole turkey would be a lovely choice however when I priced organic whole turkeys last year from various farms, the price was around $150 or so, so it was cost prohibitive. Unlike organic chicken breasts, which is easier to find, organic turkey or organic turkey breasts are a bit tougher to find at local stores.

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  Broccoli-In the past year, I switched to organic foods so this year, I'll be making organic broccoli.




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  Sweet potatoes-I love sweet potatoes and typically prefer organic sweet potatoes over regular golden potatoes however since Dad is coming for dinner, he prefers golden potatoes so I'll make homemade, organic garlic mashed potatoes (made with organic golden potatoes, organic milk, organic garlic and organic butter).



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  Stuffing-I make my Mom's homemade stuffing and the stuffing calls for breadcrumbs and cornbread crumbs. For many years, I purchased herb seasoned bread crumbs and last year, I used my own bread crumbs made from my own bread that I make in my Zojirushi Mini Breadmaker. I have had a breadmaker since 2008 and bake all of my own bread, rolls, pizza dough, cinnamon rolls, hamburger buns, etc. from scratch. There is NO comparison to using homemade bread crumbs versus store bought. None. The taste difference is spectacular!
  

Two weeks ago, I tested out a new cornbread recipe from Allrecipes.com In my Mom's recipe, she used the Jiffy Cornbread Muffin Mix. I knew there was a better way but I hadn't tried any cornbread recipes. After selecting the Allrecipes cornbread recipe, I made it and found it to be good but it crumbled easily. More searching led me to the Neely's Cornbread recipe, which received a 5 star rating. It's made with honey which I am guessing acts as a binder to hold the cornbread together better and add moisture. So this year, I'll make the Neely's Cornbread recipe, made with organic corn meal. In addition, I have some organic sweet corn that I purchased this summer and have just enough to crush up and mix with the actual cornbread. Imagine that, cornbread made with real corn! There was one other enhancement that I wanted to do but didn't get a change. The Neely recipe is made with honey. I had hoped to get a jar of honey at the Arboretum, and made from bees at the Arboretum, but I didn't get a chance to get there. Next year, I'll purchase the honey in season and have it for Thanksgiving. That will be a real treat. This year though, store bought honey will suffice.

Next, I'll try the Neely's Apple Crisp. They add maple syrup and pecans to their's versus Rachael Ray's Apple Crisp which is simple but delicious. I purchased organic apples for the apple crisp and have real maple syrup from Vermont so it should be delicious. Topped of course, with real vanilla ice cream. Another tip is to prepare the Apple Crisp and then put it in the oven to bake right before you sit down to dinner. That way, by the time you are done eating, it's ready to take out of the oven and it's nice and hot, perfect for serving. In addition, you have that wonderful smell of the apples and cinnamon while you eat.

I try to keep Thanksgiving fairly simple, I mean how much food can you really eat in one day? I do however enjoy the taste of homemade food and because organic food has better flavor, you really get a nice explosion of taste.

Today, I made homemade bread to use for breadcrumbs. Tomorrow, I'll make the cornbread and crush up the breadcrumbs for the stuffing. Other than that, I should be ready to go.



On Thanksgiving morning, I'll use the same cooking schedule that I use every year. It can be a lot trying to get everything cooked on top of taking care of Dear Son but I find by using a schedule, it's much easier. Basically, it's just a list that I typed up that tells me what I need to do at what time so that everything will be ready on time. I find that it helps a lot since I don't have to recreate the time schedule every year. I keep this schedule in my Home Manual under holidays so I can grab and go every year. That's it for this year. Are you doing anything different for Thanksgiving this year? Are there any recipes that your family really enjoys?




Note: If you want to see more of my kitchen recommendations, click here, then scroll down to the bottom of the page and click on, "Great Kitchen Gifts". You can also find it by clicking on the, "Shop-Toys & Gifts for Special Needs Children" then scrolling to the bottom of the page.



All of the tablescape photos are from my former apartment. You can see the rest of my photos, which I refer to as my, "Sugar Maple Tablescape" in it's entirety by clicking here.

Drug Shortages

In the past week, we encountered another drug shortage for one of Dear Son's medications. Dear Son wears a Transderm Scopolamine drug patch to dry up secretions in his throat. Dear Son's muscles have deteriorated and he has excess saliva that causes him to cough, choke and is at risk for aspiration. Recently, I was notified by Walgreen's that due to a manufacturing issue, they could not get any Scopolamine since it's been on back order for months. This is the second time this year, that we have been plagued by drug shortages, first with Klonopin and now with Scopolamine.

I was unable to find another pharmacy that had some Scopolamine so we had to switch to an alternative, Robinul. We had tried it several years ago and it didn't work for Dear Son. He has been on it for four days now and it still doesn't work. He chokes more every night and he's awake a lot from choking and I am awake worrying he'll choke to death and getting up to help him stay on his side and to suction him.

Several years ago, we tried botox injections to decrease the saliva however the effect was short lived. It lasted about two weeks and then it no longer worked.

Drug shortages are becoming more frequent and becoming a problem. When you have patients like Dear Son, whose life depends on these drugs, it's scary. Often, I can't find information on the FDAs website but I did locate the reason for the Scopolamine shortage on this website by the American Society of Health System Pharmacists. They list the reason for the shortage as, "increased demand". No release dates are given as to when it might be back in stock.

Drug shortages are serious problems. In September, there was a public workshop addressing drug shortages. Douglas Throckmorton, Deputy Director of the FDA's Center for Drug Evaluation and Research (CDER) states,

"Despite the efforts of all the partners in the room, and particularly the FDA, our drug shortages are getting worse and not better."

At this meeting, they urged all of the stakeholders to work together towards a solution. This problem has become so large that:

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  The FDA acknowledged that drug shortages for 2011 have already surpassed the 178 new shortages of medically necessary drugs in 2010 per Edward Cox, who is part of the four person team that constitutes CDER's Drug Shortage Program.



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  The FDA also reports that many of these recent shortages involve emergecy medicine drugs, cancer drugs, anesthetics and electrolyes, to name a few.

One proposed solution was suggested by DeWayne Pursley, neonatologist-in-chief at Beth Israel Deaconess Medical Center in Boston,who asked FDA, " to develop a list of critical medications and establish a federal stockpile of them and a fair and equitable method for distributing them. "

It's a bit shocking to even read a statement like that. I mean, I would have thought that a system would have been in place regarding critical medicines. Worse, it's hard to believe that more of these drug shortages are occurring. Dear Son has been on seizure medications since he's been two months old (he'll turn 20 in 10 days) and during that time, there was only one drug shortage. I remember one time there was an issue with Dilantin due to a fire in the warehouse that caused a drug shortage. Other than that, I can't remember any others and yet, in 2011, two of his medications have encountered shortages.

According to this public workshop, drug shortages are occurring for several reasons: Problems with product quality due to manufacturing issues, delay or capacity issues, and contractural obligations of manufacturers to reuse manufacturing lines to make other medications under contract. This problem can result in one manufacturer stopping production on multiple drugs to make drugs under contract.

At a minimum, ASHP's Director of Medication-Use Quality Improvement, Bona Benjamin, urged all involved stakeholders to support the "federal Preserving Access to Life-Saving Medications Act." The purpose of this bill is to require manufacturers to promptly notify the FDA of any manufacturing issues that may result in a shortage and also require them to notify the FDA six months prior to discontinuing any drug. Ironically, while the drugs they may discontinue may be critical or medically necessary, the FDA can't force any manufacturer to continue making a particular drug.

As a result of these shortages, I am shocked to learn that there really aren't any safeguards in place at the present time. Not only are there patients like Dear Son who depend on these drugs, but what about those drugs that would be medically necessary in case of a global disaster?

And finally, if nothing else, you would think that with the focus on saving healthcare costs, that medical safeguards would be put in place to prevent these shortages. After all, when we lack critical or medically necessary drugs, we increase the risk to patients for worse case scenarios which escalate costs. For example, the lack of Scopolamine could cause Dear Son to choke or aspirate, leading to an aspiration pneumonia which would result in a hospitalization. That hospitalization would most likely last a week or so and have billed charges associated of $40-$50k.

If nothing else, the one thing that typically gets people to take action is when the costs outweigh the current process, which is to do nothing. So in this case, what about the dollars that are spent on hospitalizations that occur as a result of a drug shortage? If a person on Medicaid or Medicare sustained a hospitalization that resulted in $40k or more in billed charges, you have to wonder at what point the federal government will step in and say enough is enough and enact a bill to force manufacturers to maintain supplies of critical drugs. Of course, first, they'll have to get a commission together, then do a huge study that will cost millions of dollars only to learn that yes, indeed, drug shortages cost money due to adverse events suffered from the lack of availability of critical medications. In the meantime, I can only hope that this shortage gets resolved so Dear Son and I can get some sleep.

Facebook Halloween Costume Tutorial

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

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

Here is what you need:

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

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

Here are the steps:

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

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

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

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

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

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

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

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

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

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

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

You are done!

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

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

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

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

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

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




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

Today, I received this response from his teacher:

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

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

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

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

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

Medical Emergency

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

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

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

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

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

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

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

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

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

Photo of Sister pointing to pus in the catheter.

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

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

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

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

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

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

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

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

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

Rehab Equipment Exchange

Photo of Dear Son's Gait Trainer

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

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

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

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

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

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

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

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

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

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

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

6) Don't forget to insure your package.

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

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

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

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

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

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

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

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

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

• It involves music.


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


• There will be a wig.


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


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

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

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

Studio Apartment Bedroom Makeover

Now that I have been moved in for a little over two months, I decided to start tackling these painting projects. Once the kitchen was completed, I knew I wanted to start painting the furniture. I must admit, I was a little nervous to paint this chest of drawers since I really liked the hand painting on them but it was also driving me crazy that it didn't match Dear Son's bed. Here is a picture of his room before I painted the chest of drawers.
And here is the after. I am so pleased with the way it turned out.

I actually had two of these dressers in my former apartment. I had one on each side of my king size bed. Here is picture of my master bedroom in my former apartment. I loved the curve on these chest of drawers as well as the hand painting on them. I thought they were very romantic. When I moved to my new apartment however, I didn't have room for both of them in my bedroom so instead of getting rid of one of them, I decided to use one in my master bedroom and one in Dear Son's room. Here is a close up of the painting on the drawers. I removed the drawers and hardware and decided to take a close up of the drawers.

I was very nervous about painting them because I liked them so much. I decided to follow the Just a Girl Blog Furniture Painting instructions. Her furniture always looks amazing. Of course, after reading through the instructions, I changed a few things. First, I cleaned all of my furniture with cleaning products I had on hand. I prefer natural cleaners so that is what I did. Next, I decided to forgo priming the dressers since the color was already dark and I knew I would be painting them black. I went to Home Depot and asked for furniture paint and decided to try Rustoleum's furniture paint which is a low luster formula. If would have helped if I would have taken a picture of the can before I started painting. I painted both dressers black even though I am only posting pictures of the one I used in Dear Son's room. Basically, I forgot to take an after picture showing my whole bed along with the dresser, lol. Here is a picture of the dresser after two coats. I think it turned out great. I should also mention that these dressers were distressed when I purchased them so I didn't attempt to patch anything but instead left them distressed.
Chris's painting instructions were excellent. She used a foam roller and foam brushes which is how I typically paint furniture. The only catch was that these dressers were full of curves making it nearly impossible! No only were the sides of the dressers curved but each drawer was curved as well. Some of the drawers were concave and some were convex! Talk about a nightmare! I had more trouble on the concave drawers but it still turned out nicely.





What made it more challenging was that I had to do all of this very quickly. Dad takes Dear Son on Saturday night so I had to get both of these dressers painted in a little over a day. Since I live in a studio apartment, I had to paint them right in the room. I covered the carpet well and didn't spill any paint.

Because the light (daylight) is behind the dresser, it made it difficult to see the paint job.

I ended up using some silk flowers on his dresser because it was more budget friendly. I still prefer to use a dresser scarf. I always love the crisp, ironed cotton in contrast to the black dresser. I closed the blinds and took some pictures at night to give you a better view of the dresser.












Here is another daytime photo. I love this picture because the flowers are reflected in the mirror.

Another photo.



I was really glad I painted his dresser. The black seems really fresh and makes the whole place feel new.



Here is a photo of Dear Son's bedroom in our old apartment. You may recall, Dear Son's bed is a hospital bed and the headboard and footboard slip over the hospital bed. These are Tendercare Hospital Beds. Click here to view the You Tube Video for Tendercare Beds. Hard to believe his bed is a hospital bed! You can click here to see what Dear Son's hospital bed looked like before we got the Tendercare Beds. I love this bed! You have to admit, if I didn't tell you this was a hospital bed, you probably wouldn't have known it.

The bedding is from Pottery Barn. I chose yellow for Dear Son's bedding for two reasons. First, yellow, white and black is a classic color combination and I thought that looked nice. Second, Dear Son is such a happy young man and was always a happy kid. I think if Dear Son were a color, he would be yellow like the sun because he is always so happy:) I think every kid is a color; you can tell by their personalities. Some kids are orange, some kids are red, etc. Dear Son, he's a yellow for sure.

The mirror is from Pottery Barn as well. The photo over Dear Son's bed is of the Arboretum near our home. I took the picture in the fall when the leaves were changing. Dear Son and I used to go to the Arboretum a lot when he was younger.

One last look. I hope you enjoyed his newly painted dresser! Linking to Just A Girl Show and Share Day.