Thursday, October 31, 2013

Halloween Wheelchair "Voice" Costume!

Happy Halloween! 

It's been ages since I posted but the truth of the matter is that life has been pretty busy since I moved into our new townhome.  Basically, Matt is no longer in school anymore so I don't have any free time at all. Scott (my ex husband) takes Matt every other weekend from Saturday night until Monday morning so I have around 24 hours to get things all my errands, any house projects and anything else I want done.  It's really hard work caring for Matt 24/7.  I don't mind but I have to hustle every day to get everything done. I cook everything from scratch for him, prepare all of his meals, feedings (he gets one cup every hour so feedings take 2 hours) plus getting him up, changing him, dressing him, taking him out for walks and moving him with the hoyer lift. It all takes time.  He's a big man to move and it's a lot. Anyway, on to the fun stuff!

I decided to make a "Voice" costume for Matt this year. I like to select costumes where it's natural for the person to be sitting down since Matt is in a wheelchair.  In addition, I wanted to kick it up a notch this year, and send out a card.  Since Matt is non-verbal, I decided to add the words, "Because everyone needs a voice." to the card.  I think it's important for everyone to be heard and it's just a fun reminder to acknowledge the disabled.  I would give the world to be able to talk to Matt, to have a conversation with him, to find out what he likes and what is in his heart. I'd love to know what he's thinking about.  I do know what makes him smile but it would be pretty good to hear him talk. Matt's only spoken 5 words in his life. They are: hi", "Mom" and "I love you".  The "I love you" isn't really intelligible to most people but I know what he's trying to say.  He hasn't said the "hi" or "I love you" in years and only recently started trying to say, "Mom" again. I melt every time he tries to say it. It should not be hard to say "Mom".  (Here's a picture of me, lol.)

One thing that changed for us was that when we lived in our studio apartment, I could hear Matt if he needed me at night. Matt's bed was on one end of the apartment, the living area and kitchen were in the middle and my bedroom was on the other end. It was a very pretty apartment and if Matt needed to be changed at night or needed anything, he'd make a noise and I could hear him. In our new townhome, our bedrooms are next to each other but you have to go into the hallway to get to his room. As a result, I can't hear Matt breathe at night very well from my room. If he needs to be changed, he coughs "once".  He coughs "once" when he needs to be changed and sometimes he justs "coughs" to clear his throat. That means, I have to jump up and go and see if he needs to be changed or if he's o.k. It's a lot of work and when I am tired, I always pray that I'll hear him when I am sleeping. Sometimes, I wake up and wonder if I really heard him or if I was dreaming. I don't ever want him to lie in pee at night and it's stressful.  Matt doesn't have the strength to cough more than once so I have to be on my toes! It makes you appreciate all of the gifts you have when you understand how difficult it can be for the disabled.  That's kind of why I thought the phrase, "because everyone needs a voice" was a perfect tie in to his costume this year.

Since Matt is getting older, I thought I'd create a card and send it out for Halloween instead of Trick or Treating. He's a little old for that although if I could get away with it, I'd parade him all over the neighborhood because it's such fun! I still like to celebrate the holidays with him and I love creating costumes for him. And yes, I'll probably create them until he's 50 years old, lol.  I just love that young man and it's hard not to celebrate him. 

Here are a few pictures of his costume:

In other news, September marked three years Matt's been hospital free from pneumonia.  Since I started Now Foods Organic Virgin Coconut Oil, Matt's never been hospitalized since for pneumonia. This is huge because Matt used to get three pneumonias a year.  I give him the coconut oil plus a blenderized diet made with mostly organic foods and made from scratch and it's kept him healthy.  We did have some issues the past few months with seizures and secretions however. Matt's neurologist was sick and out for a few months so we saw the Nurse Practioner (in May) to adjust his Vagus Nerve Stimulator however she did not set the device at the proper setting. Matt had the new device replaced last November and they were ramping it up however she failed to increase the setting to his previous level (the level he used prior to the replacement). As a result, Matt had seizures for months which meant he had a lot of secretions. I had to do breathing treatments daily to manage the secretions (the increased seizure activity caused the increased secretions). Then I was up a lot at night making sure he could breathe.  We went to the neurologist last week and the nurse mentioned that the setting wasn't correct. They adjusted the setting and Matt's seizures decreased dramatically and he hasn't need any treatments.  I can't begin to tell you how much sleep I lost over the past 5 months let alone that Matt suffered.  I am glad the neurologist is back! I was unaware that the setting was too low or I would have mentioned it.

We also got to show off at the neurologist's office last week. Matt is now able to sit up in a portable wheelchair and use his feet to move it.  Granted, Matt can't sit up very long (less than 5 minutes) but he hasn't been able to do this in almost ten years.  He had a little trouble getting his left foot moving and then the doctor and nurse started cheering him on and  clapping and he was able to move his feet a bit. Dad pushes the wheelchair to help him but it's pretty amazing considering that he couldn't even move a toe in 2010 before I started the Now Foods Organic Virgin Coconut Oil and his blenderized diet.

Anyway, Matt looks great. I am so blessed to have such a wonderful son. Matt grew up into the nicest young man a mother could ever have.  I hope you have a Happy Halloween.



Anonymous said...

I LOVE the costume and think you're fabulous!!!!

Anonymous said...

What a wonderful mom you are. What a sweet son you have. For what it's worth, did you ever consider getting a baby monitor with one part in dear sons room and the other by your bed. Turned up full volume, you might sleep better knowing you would hear the slightest noise coming from dear sons room .

Dream Mom said...

Anon-Yes, I had a baby monitor when Matt was a little boy however one day I heard the neighbor's entire phone conversation on it. After that, I regularly heard the neighbor's on it and I figured it I could hear them, they could hear me. I hated that. I swore off monitors forever. I am sure they have changed since them however that just sticks in my mind. I never feel anything is private with them, lol.

Anonymous said...

I truly understand your fear of lack of privacy. But you sound so very exhausted and perhaps the monitors are a little better now. We used them for my severely autistic grandson who is ten now. Perhaps try the least expensive one that won't be so good at picking up more sound except for Matt. I joined facebook to be able to be in on a private autistm group and I can't stand facebook but its a necessary evil to let me read some things that might help my grandson. Just thinking of a way for you to get much needed rest. I admire you so. Anon again

Dream Mom said...

Thanks. Were you the lady that just sent me a Facebook invite a few days ago?

Anonymous said...

I am not the lady who invited you to facebook. The group I joined necessitated it and their advice is great but if you value privacy stay off it. I am getting too many contacts from other people. Wouldn't recommend it although everyone seems to like it. Just wish I could think of a way for you to sleep better because my grandson and daughter live with us and we know all too well how hard it is to function without good rest. Btw, I love your decorating. It's like mine. I like formal, elegant and simple. Your photos are lovely. Truly, you are an awesome girl. Anon again

Dream Mom said...

Anon-A few days ago someone sent me a Facebook friend request to my blog email, that is why I asked. Without knowing who they were, I don't accept it. I can understand your concerns around Facebook; I post occasionally and try to be cautious:)

Glad to hear you like a simple, elegant decorating style. It seems like it's getting harder to find pretty, elegant rooms anymore. I like a room that looks decorated and "finished". Some of the rooms in the magazines today seem like more of a hodge podge of stuff. I love the traditional southern decorating style the best. Veranda is one of my favorite magazines although I liked it better a few years ago before they switched editors. It's been nice chatting with you.

Anonymous said...

I wanted to let you know how truly I am impressed with you. Your decorating style is great but more importantly is looking at the pictures of Matt and how immaculate he is. Just an everyday outfit looks so fresh and clean on him. My grandson has drooling issues and my daughter and I work at keeping him looking spiffy. Hope you are well. Wishing you guys a healthy and happy Thanksgiving anon again

Dream Mom said...

Anon-You have a Happy Thanksgiving as well. Yes, it takes work to keep them clean and spiffy but it's worth it. For me, keeping Matt looking sharp is my way of thanking God for giving me such an awesome son. He is a true gift. I see his beautiful face and I just melt, even after 22 years.

Peace to you and your family on the holidays. I am certain your daughter appreciates your help.

P.S. I already figured out next year's costume! Not sure if Matt will love it, lol.

Anonymous said...

I wish Matt and you a joyous holiday. What a beautiful thought that keeping Matt so perfect is a way to thank God for him. Blessings to all Amen. Anon again (Marcy )

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