Wednesday, March 24, 2010

Make a Wish Trip Approved~This is what he'll be doing!

Picture of Dear Son in the swimming pool at summer school a few years ago. His aide is holding him and his teacher is behind him.

In a few weeks, Dear Son will be doing this...swimming!

We took Dear Son to the neurologist today. While we were there, I told him that I'd like permission for Dear Son to go on his trip. I said that I didn't think Dear Son would get any better if we waited and there is a good chance that if he got sick again, he'd never be able to go. Also, with Dear Son's Scopolamine patch, he can't be out in the sun or he'll overheat so we need to go before it gets too hot in Florida. He agreed. I contacted our sponsors today and they'll be getting back to us soon. As you may recall, we'll be going to Disney World and staying at the Give the Kids the World Resort. We were scheduled to go last November to celebrate his 18th birthday however he got the swine flu one and viral pneumonia one week before we were scheduled to leave. Instead of celebrating his birthday in Florida, he was on life support in the ICU.

Prior to his hospitalization, we got a life vest for Dear Son so he could go swimming. You can see how relaxed he is in that photo however now that's he's grown, we needed to get him a proper life vest that wouldn't slip off. The life vest we got, was a bit challenging to get on so I had it altered a bit. In addition to zipping up the front, it also zips up the side. I had trouble getting his arm in the armhole of the vest, not because it was too small, but because Dear Son doesn't move very well and can't slip his arm into a vest like we would. To make it easier, I had a side zipper put in. Now I can lay him down, put the vest underneath him and zip it up on the side and the front without having to bend his arm. We plan on taking him swimming in Florida so he can relax.

I also asked permission for Dear Son to attend school one more day a week. He gave approval for him to attend up to 1/2 day, two days a week. I think we'll have to space it out a bit, say maybe a Tuesday and then Fridays. That would give him some recovery time in between.

All in all, a good day.
Update: The Make a Wish people contacted me today. They have already booked the hotel and are booking the flights.

Tuesday, March 23, 2010

Status Quo

This was a tablescape I made for lunch witha friend of mine. I built the tablescape around flower from Trader Joe's (love their flowers).

Sorry for the huge delay in posting. I just haven't had anything good to report where Dear Son is concerned and I've been a bit depressed about that.
Dear Son had a great week the week of the 8th. He seemed alert, more like his old self and overall, like he was improving. On that day, I had increased his feedings so we could take him to the doc and instead of feeding over 15 hours, I increased it so he was feeding over 7 hours. He did well all week and I had hoped that perhaps increasing the speed of his feeding, had made him a bit stronger. Since November, the rate of his feedings had been decreased to reduce the risk of aspiration. Now that he had been doing better, I increased it. I realize this isn't scientific however if Dear Son seems to do well, I run with it.

Last week, he seemed a lot weaker again. I was pretty depressed that he hasn't been bouncing back this time. Overall, it seems that it is taking a lot of energy for him to do basically nothing. When I move him to the recliner in the living room, just the fact that he's sitting up seems to exhaust him. For fun, Dad and I took him to a nearby mall, because Dad wanted to look at something and he thought we might want to get out of the house. We took Dear Son however he was really tired when we got home and the entire trip was only three hours. Then last Friday he went to school again, for the third Friday this month (he's only allowed to go 2.5 hours one day a week). He was tired and had a more difficult time than the week prior. They made Irish Soda Bread and he indicated to them he was tired from sitting in his wheelchair and wanted to lie down. They told him he'd have to sit there until the activity was finished. He was quiet after that but still, school isn't very long.

It's been a rough couple of months overall. Not seeing him improve coupled with not leaving the house more than once a week is tough. I am only working one day a week so I can care for him and without a wheelchair van, I don't get out at all. That, coupled with his lack of improvement has been depressing. I've also been worried about what might happen when he dies. It's going to be a very different life for me. My purpose in life and the joy of caring for him will end. It will be very hard to switch gears after spending all of my time helping him live. As a mother and a caregiver, it's a different bond when your child's entire existence hinges on your help. He needs his meds every six hours, he needs to be fed and changed. He needs to be rolled over at night so he doesn't get bed sores and he needs help with everything. I worry that although I'll go back to working full time, I think there is going to be a huge void, where Dear Son is concerned. I've tried to savor every moment with him but when you see him struggling so hard to exist, you can't help but think about what will happen when that time comes.
On a different note, I'd like to get back to my tablescaping again, but it's hard to do without time to myself. I like to make everything perfect and then take the photos and that takes a few hours to do that. I don't feel I can focus on that while I am attending to Dear Son. I have started inviting more friends over for lunch and creating my tablescapes for that so that has been fun. I did however order a slew of books from the library. I've been obsessed lately with these Victorian parlor chairs after seeing a gorgeous one with a heart shaped back on an antique site. I've also been interested in green cleaning and making my own non-toxic cleaning products so most of my books are related to those two topics. In terms of new things, I purchased a new sofa in earlier this year and it finally arrived earlier this month.

In addition, I was engulfed last week with reading anything and everything I could on the internet on BPA (Bisphenol A), a synthetic estrogen and plastic component, that is toxic. This toxic chemical is found in polycarbonate plastic, usually marked with a recycle code of 7 and also used to coat metal, so it's found in the lining of most canned food (including baby formula) and beverages. It can seep out of the polycarbonate plastic and into food and liquid, especially when the plastic is heated, worn or scratched or when in contact with fatty or acidic foods. I like to think of BPA like the high fructose corn syrup of the plastic industry in that it is everywhere however it far more dangerous. I'll let you do your own research and you won't have to look far. Everyone knows it's bad for you but yet, we still haven't banned it. I knew not to heat food in plastic in the microwave or to use saran wrap however I hadn't researched the issue enough to see just how bad it was.

Last week, I made the decision to remove just about everything plastic from my kitchen and created a 24 step action plan on all of the things I could do. One of the main things I'll do is to switch most of my dry goods and refrigerated items to glass containers or wide mouth mason jars. The issue with the mason jars was finding "BPA free" lids. I finally found a vendor that had that. As I researched further, just because something is BPA free does not mean it's safe. They can use other toxic chemicals and not identify them and just list a recycle code of "7" which is a mixed bag category. I still am looking for different spice containers, and once again, it's finding a BPA free lid that's a challenge. I've changed cutting boards and started using the wood and am purchasing some bamboo ones. I've been researching water bottles and learned that it's not enough to look for stainless steel but to look for "food grade" stainless steel. One good thing is that I don't eat many processed foods so I don't have to worry about the plastic containers they come in however there is just so many items to be concerned about. There is BPA in cans. While I don't use many, I use a few like soups or vegetables. I buy mostly fresh vegetables anyway so that won't be a big deal and I can purchase liquid soup in the boxes versus the cans. The Mini-Prep food processor I was using has a plastic work bowl. Well, the plastic isn't marked (Most of the time when plastic isn't marked with a recycle code at all, it almost always is a tip off that it's got BPA in it.) and I tried to order a replacement in glass only they don't have it in glass. Not only that, many of the work bowls from any brand is made with plastic that has BPA in it! Yikes! I haven't found solutions yet for my vitamin containers. I am working on eliminating all plastic bags however previously I would freeze cooked, chopped vegetables and store them in 1/2 cup serving sizes in freezer bags. I also would cook a turkey in the rotisserie and store that in 3 oz. bags in the freezer. I do some bulk cooking like that and am working on alternatives for food storage. I have seen some glass containers that can go in the freezer, the problem is making sure the lid is secure and it won't break. I still have to replace the dish drainer and plastic lids for the cat's food. Then there is cat food that comes in cans; I suppose those cans are lined with BPA as well. I've eliminated the plastic container for egg storage in the refrigerator and replaced that with glass. I haven't researched the plastic bags at the grocery store, the ones I put my fruit and vegetables in or any of the plastics that food is sold in. I used to store things like nuts and cheese in plastic containers in the refrigerator but I am changing those to glass. My big issue with glass was that it was heavy. In addition, when I went looking for glass containers, many had plastic lids! While I realize that not all plastic may be bad (those with codes of 2, 4 and 5 are supposed to be safe), other research showed that those plastics when heated in a microwave showed traces of BPA as well. Anchor Hocking has some nice glass bowls with glass lids although I'd like some different sizes. Most come in a 2 cup or 5 cup size. The Glad containers I was using were the 3 cup size and that was perfect for most of the items I stored in the refrigerator.

Some larger issues are that of plastics for Dear Son. It is my understand that there may be BPA in the plastic feeding bags, extension tubing, syringes, etc. I haven't begun to research that or to see if there are other options for that. On top of that, I was storing his daily feeding bag in a plastic container, his daily syringes in a plastic container and some of his liquid medications in a wide mouth plastic container. Worse yet, I was washing those plastic containers in the dishwasher once a week, so if there is BPA in them, it was getting in the dishwasher. I can change that to glass however all of his medications come in plastic containers from the pharmacy and many of those were unmarked or marked with a recycle code of 1. In addition, there is concern about BPA in all of the plastics used in the hospital, all of the "one time use" plastics for surgery and other procedures. I did go the website for his formula and they have not changed cans yet so I can assume the can lining has BPA in it.

In the end, I am only at the tip of the iceberg. My focus now is eliminating plastics with BPA or plastics period, from my kitchen. After that, I can worry about the rest of the house.

Tomorrow, we take Dear Son to see Ped Neuro Doc. I'll try to post more frequently but it's hard sometimes when Dear Son doesn't do a whole lot. Thank you for your kind e-mails and your concern.

Monday, March 08, 2010


Dear Son had a very good day today. Mornings are his best time and he woke up with a smile on his face. It was like old times. Dear Son has always been a naturally happy baby and then a happy young man. When he wasn't sick, he always woke up with a smile on his face. As he got older and much sicker, those times have been few and far between.
Normally, I give him a big hug and a million kisses when he wakes up the morning. As I kiss his neck, I tell him how much I love him and all kinds of stuff. I wrap his arm around my neck or sometimes just wrap my arms around him, depending on what he can do. While he doesn't reciprocate very well, lol, he does enjoy it. He just kind of lays there as if to say, "oh, Mom" but when I look at his face when I am done, he'll have a sparkle in his eye and will be smiling. That's on a good day and we haven't had a lot of those over the past few months.
I told him that Dad was coming over to give him a haircut and bath and that we were heading to the doctor. Normally, Dad does this on weekends however it was easier to do it all this morning. When Dad wheeled him out of the bedroom for his shave, he seemed genuinely happy. He was bright eyed, looking around, watching the cat and very in tune with what was going on.
Dad had a little fun with him and decided to shave the hair on the top of his head only and left the sides as if he were bald and told me to check it out. Of course, I said no and that he needed to shave it all. Dear Son thought that was funny since he likes when a little bit of chaos happens or something doesn't quite go as planned. Dear Son enjoyed the whole process.
We saw the GI doc later in the day and I asked him to check his stomach. Once Dad put him up on the examining table, Dear Son actually said "hi" to the doctor. He rarely talks and only has a handful of words but it is easiest to speak when he's on his back or side. In the old days, he always said "hi" when he got to school or when he would be around people.
Once the doctor left, the nurse started talking to him. She sat down and looked him in the eyes. She told him how good he looked and really seemed to connect with him. He was engaged with her and had a big smile on his face. He was looking at her with his big blue eyes and for a minute I could see the old Dear Son in there. His skin was beautiful and clear, his eyes were bright and overall, he looked really good. It was wonderful.
We stopped for an x-ray of his stomach after that and then came home. He fell asleep in the recliner and later I put him to bed. I stayed in the room to talk to him for a while and he worked hard to say, "Hi, Mom". Once he gets the "hi's" going, he'll keep saying it but today he kept trying to get the "mom" in too. It doesn't get much better than that.
He slept the rest of the day but all in all, it was his best day in a very long time. Dear Son is a wonderful young man and it was really nice to see him like his old self again today.
It was ironic too because as we were driving home, we passed by his old daycare center. Back then, he could walk on his knees and he loved being around the other kids but especially loved it when they would take the kids out to the grassy area behind the daycare center. Of all of the places for the kids to run and play, there was this one spot, a dirt hole, that he loved to play in. He would sit in this dirt hole and loved it. When I would pick him up after work, I'd come outside and once he'd see me, he'd take off on his knees in the other direction, out of the dirt hole and wait for me to come after him. I'd tease him and come up to him and wrap my arms around him. He loved it. As I passed the daycare center today, it reminded me of the old dirt hole. I had half an inkling to drive around back to see the old dirt hole and to talk to him about it, to see if he'd remember it. That's how I knew he was having a good day. Because it brought back the old memories with a fondness for the good 'old times rather than a memory of the good 'old days when he could do "x" and the sadness that follows. As we passed the daycare center, I couldn't help but get the picture of him out of my mind, sitting in the dirt hole with his turquoise t-shirt on, the sunshine radiating on his black hair and his clear blue eyes and Dear Son radiating the same joy right back at the sun. I guess that's why the Disney Make a Wish trip meant so much to me, because I wanted to see his face like I used to, all lit up with the sun shining down on him, just like the good 'old days. I never realized that until now.
As for me, I am slowly feeling better. We have another appointment tomorrow with the pulmonary doc.
P.S. If you haven't read the dirt hole story, you may want to read it now. It's probably one of my best stories.

Saturday, March 06, 2010


I felt a lot worse today so I probably won't be posting for a few days.

Wednesday, March 03, 2010

Good News, Bad News, Please Pray

The good news is that Dear Son starts school tomorrow. He'll try it for 2.5 hours and he's excited. The bad news is that I got the stomach flu today. I called Dad to come help me from 9 to 4 today but I can't really do much. I had him get everything ready for tomorrow. Dear Son has not been to school since the Friday before Halloween, that's when he got the swine flu and had respiratory failure within 48 hours of contracting it.

Please pray he does not get sick. He can not clear his airways if he vomits and I am in no position myself to take him or even go to the ER. I've only stood up twice today, outside of going to the washroom. The flu or pneumonia is the worst thing he can get. And yes, he got the swine flu, seasonal flu and pneumonia vaccine six days before contracting the swine flu.

Thank you.
Update: As of today (Friday), I am starting to feel a bit better. Dear Son went to school and did well, according to his teacher. He was exhausted and slept the entire day when he got home. I think it may have been a bit much for him. We'll have to take it slow.
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