Wednesday, December 26, 2012

Christmas 2012

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


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


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

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

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

In other news, December 20th marked the one year anniversary of Dear Son's real food blenderized diet. As you may recall, Dear Son eats via a feeding tube and last year I got rid of the formula and switched him over to a real food blenderized diet. He's doing great on this new diet.  We went to the doctor two weeks ago and he lost more weight. 
 
  • Dear Son has now lost 18.6 pounds since I changed his diet. That's great for someone who is essentially an invalid and doesn't move much.
  • His cognitive skills are much better. Both his brain and his body work so much better now.  He is now able to communicate with eye blinks in response to yes/no questions. On the Friday before vacation, he has a blast at school because the kids in his class came up to talk to him and ask him questions. He responded with eye blinks and then that kid told another one and soon they all came up to talk to him and ask him questions. Dear Son was positively glowing when his nursing aide told me all of this after school.  In twenty one years, Dear Son has never been able to do this so it's really wonderful.
  • His body works better. His dystonia (movement disorder that makes it hard to move since your body is contracted and doesn't relax) is much improved. I can lift up his arm and he no longer has any resistance. I tease him and say his arms, "move like buttah" and he smiles every time.
  • His acne improved significantly. He went from bad acne to mild and nearly clear skin.
  • He's never sick now even though kids/teachers at school get sick. Some of them got the colds/flu but not Dear Son. How cool is that? He used to be the first one sick and now that he's on a real food diet plus the Now Foods Organic Virgin Coconut Oil, he's been pneumonia free for over two years now and has not had any hospitalizations for pneumonia.
  • He looks healthy!
I am also giving myself some credit. This is a huge committment on my part. I make nearly all of his foods. In the past year, all of the bread has been homemade, all of his protein sources are organic, he gets eleven servings of fruits/vegetables a day (some organic, some regular), omega 3's and probiotics. This means that when I get tired, I can't go through a drive through or put a frozen pizza in the oven for him. I've made everything from scratch for him for one year. There were only three times in the past year that I have him formula instead of making him real food.  All of his meals take two hours to administer since he gets four cups of blended food/water per meal and he gets one cup of blended food every thirty minutes. I wouldn't trade these results for the world though. It's also really easy to put together since I use an exchange type system. It is a ton of cooking though.
 
One benefit of his blenderized diet was at an office visit. We went to his wheelchair check up recently after getting some new parts. The wheelchair vendor, who's fitted all Dear Son's wheelchairs since he was three, couldn't figure out what was different. When I mentioned his acne was improved, he exclaimed, "That's what different! I thought Dear Son had just come back from vacation because he looked so good!" He went on and said he was amazed at the change.
 
Overall, it's been a great year. But the best is when I see his happy face.  You can tell that he not only looks healthy now but he feels great.  Here is another picture of Dear Son with his new hat that he got for Christmas, posing with his Dad. I like this picture since you can see how good Dear Son looks and because you can see how much his Dad loves him.
 
I'd also like to thank all of my readers for your continued support and comments. It's so nice to have people interested in Dear Son.  Wishing you all some rest and happy holidays.

Tuesday, December 04, 2012

Making a List and Checking It Twice... The Importance of Having a Pre-Op and Post-Op Plan

After Dear Son's recent surgery, I made a list of things that made it successful this time. One thing I noticed was that while I had a great pre-op plan, I really didn't have a post-op plan. I was so worried about getting through the surgery that I totally forgot about it. I realized this last week when he was starting to cough and had some breathing issues. I was able to turn things around by increasing the Now Foods Organic Virgin Coconut Oil and increasing his nebulizer (breathing) treatments. I realized then that I needed to have a better post op plan and that I needed to document it for future surgeries.
 
Prior to his surgery, I focused on keeping him well and making sure he was as healthy as could be before the surgery. Typically, his diet can range from 30-75% organic per week and prior to the surgery, I made certain to increase that to 75% or more. I made sure all of his fruit was organic so that he'd have as many antioxidants and as few toxins as possible. While normally, he gets 1 tbsp of Now Foods Organic Virgin Coconut Oil to prevent pneumonia, I gave him 2 tbsp/day. I gave him a breathing treatment the morning of the surgery, the first treatment he had since May of this year since he really didn't need them anymore.
 
For post-op, I realize that I needed to do a few things:

  • Increases Miralax to twice a day for the first 10 days after surgery.  Since Dear Son couldn't be repositioned much in bed due to his incision, he wasn't moving around as much making it more difficult to have a bowel movement. In addition, the anesthesia made him more constipated so he needs additional help. He was constipated for 9 days after the surgery and is now back to normal.
  • For the coconut oil, I'll increase it to twice a day for the first week, then cut back to once a day for the second week but give him 2 tbsp. For the third week, he can go back to 1 tbsp/day. This way, it will keep him from getting any pneumonia, when he can't be moved as much. The additional coconut oil will also help him overcome the constipation from the surgery.
  • I think he benefits from nebulizer treatments for a while after surgery. I'll do 2 treatments/day week one and then go down to 1 treatment a day for the next week or so and then off the treatments.
  • I'll use the Scopolamine patch to dry  up secretions, if they get too intense. On Friday, I noticed he was choking on his secretions and coughing a lot. I put the patch on for one day and it dried up secretions enough that he could rest comfortably. Less secretions means that he has less chance of aspiration.
  • Chest pt-I was doing some chest pt after the surgery so I would just make certain to do it a few times a day, every day to keep his lungs clear.
Since Dear Son is medically fragile and since he needs this Vagus Nerve Stimulator to control seizures, I know that I need to have a great pre and post surgical plan in place for any future surgeries. I feel confident now that I have a good plan in place for the future.
 
Dear Son is doing much better than he was a week ago. His bowels are moving daily, he looks good and I continue to give him one nebulizer treatment a day. He smiles when he sees me get it out so I know it helps him.I suspect I can stop that in another week or so. 
 
My goal is to keep him the best he can be. It's been wonderful this year to see him improve so much with this blenderized diet. He is so much better cognitively and it's working great on every level. It's also been a lot of fun seeing him enjoy life so much and for the first time in umpteen years, it seems like things were easier for him to be him.   As a mother, all you ever really want for your kids is to see them happy. For a kid like Dear Son, keeping him well and keeping him healthy requires constant diligence since even minor slip ups can have a huge impact on him.

Tomorrow he goes back to school so it should be an exciting day. He is really looking forward to it and I feel confident that he is ready.
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