Summer Walk

I took this photo of Dear Son the other morning after I got him up into the chair.  He's off school for the month of June and I've been pretty busy taking care of him 24/7 plus cooking all of his meals from scratch, doing the blenderized meals, plus everything else that comes with caring for him.  He's been absolutely delightful though. He loves listening to his country music every day. 

Today we went out for a small walk around our neighborhood. This is the entrance to our apartment complex. I like taking a picture of him here because of the pretty flowers.

It was really sunny (and hot!) so it made it a bit hard to take photos and view the photos I took in the sun.

He was happy to go for a walk but wouldn't smile for any pictures!

 For some reason, I didn't notice that his arm wasn't propped up on the arm rests.  He can't move his arms by himself so I have to prop them up there for him. You'll have to pardon the visor, not very manly however he refuses to wear ball caps. I tried to get him to wear them but he hates hats.  He just leans his head over until they fall off, lol. He will wear a visor so that is the best I can do to keep the sun out of his eyes.

We live in an apartment complex on the golf course. There is a river that runs along the golf course and walking trail. I just love walking the trail and never get tired of the views. We see a lot of wildlife when we walk too and it's wonderful to hear all of the birds.

I just signed another lease here however hopefully, it will be my last one. I am hoping to purchase a home next year for us. I need to find an ranch home with an open floor plan. For some reason, he wouldn't smile for the pictures today. He was thrilled to go for a walk though. Typically, he likes going for a walk with his Dad because they walk over to the movie theaters nearby and Dear Son likes to watch the girls. I told him we can't do that because Moms shouldn't go with their sons for girlwatching.

School informed me that his favorite song is, "What's a Guy Gotta Do to Get a Girl in This Town". I had to go to the cowboy lyrics website to get the lyrics. It goes something like this, "What's a guy gotta do to get a girl in this town, I don't wanna be alone when the sun goes down, just need a little someone to put my arms around, what's a guy gotta do to get a girl in this town?"

Dear Son is so sweet and it makes me sad to think he's not going to date or get married some day. I am sure he has dreams of a girlfriend like other young men his age do. It's sad.

Another picture of the trail.

He wouldn't smile for our walk however this man was walking his dog and the dog wanted to come over near Dear Son and when the man pulled the leash to pull the dog back, Dear Son cracked up. He likes someone (even a dog) getting in trouble. That was the closest I could get to a smile for pictures today.

Overall, he's doing o.k.  He's been having some severe choking episodes for the last month and I am unclear as to what is causing them. His throat muscles have deteriorated so he can't swallow/process his own secretions. As a result, they get caught in his throat and he's been choking on them. He actually had some pretty severe episodes last month that seemed almost like an allergic reaction of sorts. It started after I started a new multi-vitamin. I discontinued that and while the airway swelling seems to have stopped, he is still having some choking episodes that will require a doctor visit or two to determine if there is some underlying issue.

He'll start summer school for three weeks in July so I am looking forward to getting a little break. It's really pretty tough doing 24/7 care without any breaks. He is however enjoying his daily leg massages. I rub coconut oil on his legs and feet and he smiles every day when I rub his legs and feet. I tell him that everyone likes having their feet rubbed. I used to rub his legs/feet every day to reduce swelling however it's not really an issue like it once was but he really enjoys it so I do it anyway.

Happy Mother's Day

Mother's Day is always my favorite day of the  year.  I have been blessed with the best son in the world. I thought it might be nice to tell you some my, "Top 10 Favorite Things About Dear Son":

1. He always has a smile on his face.

2. He gives good hugs.

3. He is happy to the core!

4. He gets along well with everyone.

Dear Son on his 19th birthday at school.

Dear Son and his girlfriend at school on his birthday.

5. He has a great laugh.

  

6. He's gorgeous.

7. He's very photogenic.

Make a Wish Trip 2010

8. He takes in everything life has to offer.



Bowling with school friends.

9. He laughs when things go wrong.

 

10. He loves his Mom.

 

Dear Son and I at school in 2009.

Dear Son Photos

 I took these pictures of Dear Son yesterday before our doctor visit. I bought him some new shirts last week and wanted to get a picture.  You can tell from the photos, he's doing well.

 I can't believe how big he looks now. He'll be 21 this year and is all grown up! These pictures are right outside our apartment door.  There is a 12 x 12 foot landing right off the elevator so there is a lot of room for his wheelchair and to take pictures. I never know quite where to stand when he's in his wheelchair though.

 I was checking the photos out in my camera while we were waiting for the doctor in the waiting room and Dear Son started making me laugh.  There was a prettier view out the window for a photo but before I could get his wheelchair turned around the doctor came in.

The doctor said it's the best he's seen Dear Son in years. I have to agree, he's doing fantastic since he's been on his "real food" (blenderized real food administered via the g-tube).

Lowest Medical Expenses in 10 years!

As you know, Dear Son was a very sick young man for many years. Over the past ten years, he's been transported by helicopter nearly ten times, had multiple hospital admissions, had two MRSA pneumonias, countless bacterial aspiration pneumonias and viral pneumonias, the H1N1 virus as well as a few surgeries: had a gtube implanted, a Vagus Nerve Stimulator implanted, a Vagus Nerve Stimulator replaced (battery depleted and they replace it with a new model) and a lot of other unfortunate medical issues. He was also diagnosed with a progressive neurological disease one top of everything else. In 2009, several physicians at Big Academic Medical Center told me they didn't think they could save him anymore if he got pneumonia and that he would most likely die from it. He had multiple lung collapses and had been placed on a ventilator several times in the past few years with his bouts of pneumonia. They recommended palliative and hospice care during different admissions.

In 2010, I discovered Now Foods Organic Virgin Coconut Oil and I was able to stop all pneumonias from that point on. He has not had any admissions for pneumonia since September of 2010 and in a few days, it will be 18 months since he has had a hospitalization for pneumonia. On top of that, I started a blenderized diet for him on December 20th of 2011.

Last year, he had medical expenses that were much lower than previous years. In fact, his billed charges were well under six figures. I thought it might be fun to go back and check previous years. I keep spreadsheets by year and discovered that Dear Son's medical expenses were the lowest in ten years. Our highest year was 2009 with multiple admissions including the H1N1/viral pneumonia and the second was in 2006 with two MRSA pneumonias. These are billed charges of course which is prior to medical discounts. (And yes, these were covered by several insurance plans.) This year we hope for more of the same and hope our medical expenses will be even lower.

While I think most people know that nutrition is important for good health, I don't think most people understand how difficult it is to get a chronically ill person back to good health. It's certainly not easy. People are beginning to notice that Dear Son is really different now-he's more alert, engaging in more activities, not sleeping as much and just enjoying life more. At home, he's so much fun now that he feels better.

The other plus is that we need less formula which means our medical expenses will continue to decline. We are down from some 6-8 cases a month to two. I still haven't converted breakfast from formula to a blenderized diet but it will happen. Right now, I am still tweaking his diet and putting into action some items the nutritionist suggested.

On other news, this weekend I took some pictures of my desk/table that I painted. It turned out great and looks fabulous. I hope to post those in a few days.

I wanted to share some pictures of Dear Son. We went to the opthalmologist a little over a week ago for a follow up visit and some lab work. We were at Big Academic Medical Center for several hours. During that time, I couldn't help but notice how different he is versus a few years ago. He was happy, holding his head up, sitting up straight in his wheelchair and looking around. He had a grand time watching everyone. By the time I realized how good he looked, I tried taking some pictures with my camera phone but by then, his eyes were dilated and they weren't as good. Since I've been blogging for six years and taking so many photos of him, I can't help but notice how different he looks now that he is well. The real food blenderized diet is working so well. He just looks better. It's as if a veil has been lifted and now that all of the sickness is gone, he can just be himself.

I took these photos at 7 a.m., right before he went down on the bus. I asked him to smile and he was all smiles for the camera. His one on one aide at school said he smiles from the minute he gets there until the moment he comes home.

You can see he still has some strabimus however we won't be during surgery for that any time soon. He had strabimus on his one eye when he was ten or so however since he's a high surgical risk, we won't be doing the other eye any time soon.

We met with the nutritionist last week that specializes in blenderized diets. Nothing really new; it appears I have been doing a stellar job. His calories, water and his weight are all appropriate for his height. She had some minor tweaks that I'll incorporate but overall, things are going well.

Have a wonderful weekend.

Happy Valentine's Day!

Happy Valentine's Day! I snapped a few pictures of Dear Son in the hallway after school today. He goes to school three mornings a week, since that's all the doctor will allow him to go. He gets on the bus at 7:20 a.m. and leaves school at noon. I knew he would be excited to go today since it was Valentine's Day. No one loves a party more than Dear Son.


Well, when it came time to leave school at noon, he was very sad. He made a sad face to let everyone know he wasn't too happy about it. One of the girls in his classroom, saw his sad face and came over to him, grabbed his hand and was holding his hand and stroking it and telling him not to be sad. Well, Dear Son perked right up and had a big smile on his face. Then she read him her Valentine for him and placed the Valentine, which had a big red heart on it, in his pocket. He was so excited. She went on to tell the aide about how handsome she thought he was, lol.

When he got off the school bus, the aide told me the story and he was all excited. He was smiling and laughing as she told the story. It was great to see him so happy.

It snowed today so I decided to take the hoyer lift out into the hallway to get him out of his wheelchair. Since he was so happy, I took a few pictures of him. He's slouched in his wheelchair so his clothes look a bit disshelved but overall, he's doing well.

I hope you had a good Valentine's Day. It's wonderful to see him so happy and doing so well after all of those years when he was so sick and in the hospital all of the time. It seems like a very long time ago.