Update on Billy Ray 9/30/06

Thanks for all your well wishes and inquiries about Billy Ray's recovery.

He is doing better than we dreamed he would do based on all the side effects and complications in the last year. He, of course, is not happy with the restricted diet which means soft foods. He wants hamburgers, popcorn, etc.

He is definitely getting tired of milkshakes. He will eat some baby food but throws his nose up at lasanga and other things in baby food that he loves adult food. I am getting as creative as I can with the food processor. I pureed lasanga for his lunch and he ate that well. Tonight I baked a terriyaki chicken patty then cut it up and put in the food processor with a little extra sauce so it would be smoother and softer. Both worked really well.

He will see Dr. Masterangelo for a followup on Monday and hopefully he will add some things. I know that bread is going to be the last to add and BR will hate that.

He is keeping himself busy mornings until he runs out of energy and then rests. I worried that he might be doing too much so soon after surgery but Dr. Masterangelo said it was good for him to be moving around as much as he can. I have been worried that he would hurt himself throwing himself on the floor like he does sometimes playing but he hasn't been doing that as much. He is playing with Penny Lane a lot this week.

The above picture was in our old house in Scotts Mills. I am running out of pictures that you haven't seen. Time to take some more!!

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: http://www.parentingyourcomplexchild.com/ and http://www.lighthouseparents.com/
Club Mom, Yahoo Group

My Son, My Teacher

A review of my book said there are books by professionals and books by parents but I tried to do both and proved why they don’t mix. That stung a bit because it missed the whole point of the book. I was thinking about it again in the past few weeks as well meaning comments have come in from various sources about how well we adapt to what Billy Ray needs.

There are many wonderful books by professionals and parents that give recommendations on how to take care of your child based on a variety of special needs. The problem is that most of our kids are unique and don’t fit into the mold of every other child with a specific diagnosis especially in they experience combination diagnoses. The reality is that none of the recommendations from professionals or materials I have read worked 100% for Billy Ray.

Billy Ray is my professor. The biggest success we have had is in learning what he teaches about what works for him. The journal and documentation system I created was a lot like taking notes in a classroom. I couldn’t possibly retain everything when he was tutoring me by his reactions to different things but when I looked back at my notes I did see the recurring reactions and change my approach to make it work for him better.

It took a lot to free myself from the need to do everything that professionals either personally or in writing recommended. In the end he has been the real expert in what he needs.

You probably have a great professor in your house too or you wouldn’t be reading this blog or other of my writing. He or she can teach more than anyone else if you will trust yourself to interpret the teaching.

Until next time,
Peggy Lou Morgan
My Other Blogs: Amazon Author Connect and Lighthouse Parents
Websites: http://www.parentingyourcomplexchild.com/ and http://www.lighthouseparents.com/
Club Mom
Parenting Your Complex Child Yahoo Group

Applying Creating a Community Methods to a Hospital Setting

I just wanted to let you know that I ended up getting up with Billy Ray at 4:30 a.m. to give him pain meds. I didn't go back to bed because I wanted to be sure he was okay. Since I was up I wrote a blog post on my Amazon blog about adapting and communicating in a hospital setting. I wanted to give you the link in case anyone is interested.

Billy Ray is a bit noisy but seems to have more energy. He is sorting toys and his closet which is his favorite form of play. He has also been marching with his walkman. While he seems to have some pain which is normal following surgery, he also seems to be doing better than I expected.

Until next time,
Peggy Lou Morgan
My other blogs: Amazon Author Connect and Lighthouse Parents
Websites: http://www.parentingyourcomplexchild.com/ and http://www.lighthouseparents.com/
Club Mom
Yahoo Group

Energized Though Exhausted

I know the subject doesn't make sense but it is where I am tonight. We haven't slept more than 2 or 3 hours at time the past 48 hours so forgive me if this is rambling.

Billy Ray is home from the hospital already thanks to Dr. Masterangelo, Brice Stanley, PA-C, Dr. Raudy and a lot of answered prayers. Dr. Masterangelo was thrilled with how well he did in the surgery. He is having some pain which is to be expected but the whole process went better than we dreamed possible.

Of course, now it is time for me to adapt and communicate to this situation because we have an angry guy who wants popcorn, hamburgers, potatoes, and any kind of bread - all of which are no-nos for a while.

I tried several different things in terms of preparing Billy Ray and me for dealing with the hospital setting. I will share those either here or on my Amazon Blog as soon as I catch up on some sleep. However, I wanted to let my blogger buddies know Billy Ray is home in his own bed breathing just noisily enough that I know he is okay though covered up with his favorite quilt over head but not nearly as uncomfortable as before surgery waiting up with acid reflex and/or snoring loudly.

Until next time,
Peggy Lou Morgan
My Other Blogs Amazon Connect and Lighthouse Parents Blog
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom
Parenting Your Complex Child Yahoo Group

Billy Ray's Upcoming Surgery

I am not sure whether having advance notice of Billy Ray’s surgery this time is a blessing or a curse (smile). He has been in the hospital three times since July 2005 and all have been basically emergencies. You grab what you can and try to explain to my husband what he needs to bring to the hospital.

This time we have over a month’s notice. I am trying to be really organized about it getting his things ready and getting things done at home that end up being abandoned when we have the short notice things. However, it actually seems almost more stressful having this month to worry about the risks, plan for the post-operative care.

Billy Ray is having the Nissen procedure for his advanced GERD (acid reflex). It sounds so scary to me that they wrap part of his stomach around his esophagus to strength it. There are risks for everyone but Billy Ray’s general issues complicate them. I am probably most concerned about getting him off the ventilator after what happened last time. The risks worry me but we cannot just do nothing either. He aspirates food and chokes even when he isn’t eating because the GERD washes things back up when he is sleeping or just going on with his activities. He has tried multiple meds such as the purple pill (Nexum) and others for over a year and nothing has stopped his pain or choking.

The support in our church community is amazing. For example, Bruce (pictured here with Billy Ray) is taking a day off work to be there for Billy Ray during surgery. I am so touched by that. Also the “cookie lady” (Donna who makes the high fiber cookies for Billy Ray because he will eat them better when someone else makes them) and her husband plan to be there. Person after person has let me know that if there is anything at all we just have to ask. Maybe knowing in advance is a good thing after all. I think it also shows the benefit of becoming a part of a community no matter how difficult it is.

I am making him a new album to take with him with lots of his friends and activities in it. I have been reading him Curious George Goes to the Hospital and writing a personalized picture story to co-orindate with that so he will be clear on what to expect.

I probably will actually have more time to blog when he is in the hospital than I have had lately. I have some things from the conference with Dr. David Pitonyak I have been wanting to share with you but haven’t had a chance. I can access the computer in the family room at the hospital if he is sleeping. I will try to stay in touch.

Until next time,
Peggy Lou Morgan
Amazon Blog
www.parentingyourcomplexchild.com
www.lighthouseparents.com
Club Mom
Parenting Your Complex Child Yahoo Group
Lighthouse Parents Blog

Who Says Children with Autism Don't Make Eye Contact

I am preparing an album for Billy Ray with some of his special people so that he can take it to the hospital with him. He is having surgery on the 21st for his GERD. Here are two of the pictures I took Sunday at church. He isn't feeling well so they aren't the best pictures of him but they clearly show eye contact and I wanted to share.

This first one is with Denise, our pastor's wife. Denise is very special to Billy Ray and very insightful at supporting our family. When Billy Ray was in the hospital a year ago she even brought him a wonderful large stuffed dog knowing he couldn't have his service dog there. It was used mightily to comfort him and even to support his IV's.


This is Billy Ray with Dave who is a great friend and support both to our family and my work. Dave kept telling Billy Ray to look at me while I took the picture but Billy Ray just wanted to look at Dave. By the way we all call him Dave but for some reason BR refuses and insists on calling him David.

Until next time,
Peggy Lou Morgan
Blogs: Amazon and Lighthouse Parents
Websites: Parenting Your Complex Child and Lighthouse Parents
Club Mom Articles
Yahoo Group