Friday, October 30, 2015

Happy Halloween! Donald Trump wheelchair costume!

Happy Halloween! Even though we don't go out trick or treating, I still enjoy making a costume for Matt. We had a lot of fun doing it. He was laughing and smiling until I put the wig on and then he didn't like it very much. The wig was very small so maybe that was it. Overall, Matt never likes anything touching his face or his head. You can't blame a man for not wanting to wear a wig lol.
I thought it would be fun to have him be Donald Trump. The wig did not look anything like the wig on the package! This wig looks nothing like Donald Trump but it does make you laugh. To me, Halloween is all about having fun with your kids, making them laugh and having a good time. I think we did that.
 Here is a close up of the White House. I made it as accurate as I could but when you do it on such a large scale you have to really keep it simple. I really couldn't do all of the columns, windows and everything so I just scaled it way down. I added some window treatments and some flower boxes even though they don't really exist. I added the gold Trump letters since he usually puts his name on everything. It was a fun costume to create.
 I was kind of disappointed in that I couldn't get any pictures of Matt smiling. The wig was really very tight and very small and that kind of ruined it. Of course he smiled as soon as I took it off! That's the way it goes sometimes. He's a really happy kid and he is a fantastic kid. I couldn't be more blessed.
In other news, my good friend and neighbor died in July shortly after I created my last post. Two weeks ago, we lost Scott's mother at 94 years old. She was an orthopedic nurse for 50 years and retired from nursing at the age of 72. She fell and broke her ankle and leg when she fell in the hallway of her home. They had to do surgery immediately and put a rod from her artificial hip down into her leg. She had to go in a nursing home and was there for a month and never recovered. She just wasn't interested in rehabilitation and learning to walk again. That's pretty tough to do at 94. It's really been a sad time for us. I miss my mother immensely. It is going to take a very long time to get through that. My mother in law was a wonderful lady. Great sense of family and always made everyone feel welcome. I will miss her dearly as well.

Matt is doing fairly well. We are having some issues from time to time with his breathing. A few weeks ago he almost went into respiratory failure. He was not sick or anything and he was actually on 3 liters of oxygen when it happened. He is on night time oxygen because he stops breathing at night sometimes and this occurred in the morning. I tried turning up the oxygen and when that didn't work, I knew he was in trouble.  I immediately got him out of his bed and put him into a chair to sit him upright and he recovered. I spoke to the doctor previously about what to do in case of an emergency or if he had some breathing issues. He had suggested sitting him upright since he can move oxygen around much better that way. I contacted his doctor and we did some xrays and even though Matt was not sick it appears that there is some scarring in his lungs from all of those pneumonias and Matt has some damage from all of that. He is not able to move air around very well. We will follow up with the doctor again to see if there's anything more we can do for Matt. He isn't sick and he's doing quite well right now so that is good. We see the head of adult pulmonary at big academic medical center. He is also the medical director over the ICU. He is an expert in ventilation, respiratory failure, acute respiratory distress syndrome and a host of other issues, all of which Matt has had, lol. So I do believe we have the right guy.

Other than that, things are okay here. Will try to post when I when I can.

Thursday, July 09, 2015



It's been a while since I've posted updates and since I've received a few emails, I thought I'd give it a try. It's pretty hard doing anything other than caring for Matt since I really don't have any free time now that he's not in school anymore. Overall, he's doing great. We recently got a new wheelchair for him so I snapped a few pictures with my phone. We had just walked outside to take a walk around our neighborhood to try out the new chair. Matt's old wheelchair was almost ten years old and kept breaking. It was also hard to push. As you can see, Matt's a pretty big guy. He's around 6'2" or so and about 205 pounds. He doesn't look real tall in the chair however his legs are long, his torso is pretty long and he's just a big guy. Tall shirts and pants work better for him but are sometimes harder to find.   I thought these pictures were great because he looked so happy.

In some not so great news, my Mom died last month. She had been in a nursing home for a few years but it was somewhat unexpected.  I visited her once a week and talked to her on the phone a few times a week so that was good. Once I got the wheelchair van last year, I was able to bring her home for dinner a few times. It was great getting her out of the nursing home and wonderful to visit with her. The only good thing was that I was able to see her and visit with her right up until the end.  The day before she died, our family was able to all be with her to say our goodbyes. At one point, everyone left the hospital room and I was holding her hand.  She was reaching out as if she was trying to rub her forehead so I put my other hand under her elbow to guide her and she took her hand and brushed my bangs off my face a few times as if to rub my hair like she did when I was a little girl going off to school. She then took her hand and ran it over my face in a Helen Keller kind of way and I began to cry. It was almost as if she knew that the end was near. I was glad to have that moment since she passed away the next day, just 15 minutes prior to getting to the hospital.

In terms of my mother, I am really feeling the loss. I think I needed my mother more as an adult than I did growing up. My father passed away when I was 13 years old however it wasn't until Matt was in the hospital all the time a few years back that I really depended on her. I could always call her and tell her what was going on with Matt at the hospital and she was always there to talk to me. As you know, we'd spend weeks and sometimes months in the hospital so that was really special to me.  In the last few years,  I really enjoyed spending time with her at the nursing home. Although she had dementia, she could still speak and carry on a conversation. She was a very kind and loving mother.

She had many hobbies....she loved ballroom dancing and her favorite dance was the Tango. She played the piano by ear and was quite good. Unfortunately, none of us kids inherited that talent. She loved classical music and opera so we grew up listening to that music. She had a very good voice and worked as a telemarketer in her late fifties before going back to full time work downtown. At around 80 or so she sold her home and moved to a condo overlooking Lake Michigan. She loved nature and eating her breakfast overlooking the lake. She loved people and loved to talk, lol. She was very extroverted. She also loved nature. One of her favorite things were birds, especially the cardinal.  She had a collection of birds so when she died, I purchased a curio cabinet off of Craigslist and put all of her birds in there. I took a few pictures of them to show you.

Perhaps most important in her life was her marriage to my father. My father spent 22 years in the Army. He won numerous awards including the Commendation Medal for his outstanding service in Korea. My father was one of seven children. His father died when he was two and my mother told me he had a hard life and all of the kids worked from an early age.  When I was going through my mother's things, I came across two letters from my father. My mother and father were deeply in love and I can remember them always kissing before he left for work and as soon as he walked in the door. His letters always started with, "My dearest Joan" and ended with , "Your husband, Bob". He'd write "My Mrs....." on the front of each envelope and ended every letter with, "here are your hugs and kisses". He'd start the letters asking about her, then talk about what he was doing, then ask or comment on us kids and finally he'd give her the hugs and kisses in the letter and tell her the exact time he'd be home. It was really lovely to read.  One of the letters I found was on their 16th wedding anniversary (he died right before their 25th wedding anniversary). It was written in 1962or 63 if I recall. He wrote their weeding anniversary date at the top and then wrote to remember this day and night (go Dad, lol). He started the letter off with, "Sixteen years ago we started our journey together....then he went on to say how much he enjoyed being married to her and how happy she made him and how great their life was together. He said he hoped it was as enjoyable for her and it was for him. He went on to thank her for their life together and for her kindness through the years. It was an amazing letter  and one I'll certainly cherish. He then went on to tell her that he hoped she liked the gift he sent her. I was touched by the letter and how romantic it was. A few weeks later I was going through her pictures and found pictures of her with the red roses he sent her and the gifts.

I have been missing my mother and it will certainly take some time to get over her death. She was 89.  As sad as it was, I was so thankful to have Matthew. When your heart is broken, it's wonderful to look into his eyes. He is such a happy young man and brings me such joy at such a difficult time. I know now why God gives us children. It's to help us go on.

With the new wheelchair van, we are able to do more things. Scott bought me the wheelchair van last year so that I could take Matt more places.  This year, we were able to go to a local Fourth of July parade. I bought him a new shirt for the parade although you can't see it with the wheelchair chest strap and slobber towel. He was so happy! You can just see the joy on his face at the parade. Matt makes you want to do more for him since he is so appreciative of anything you do. It's really hard taking him anywhere-I start five hours ahead of time just to get ready! I make his meals from scratch and he gets 1 cup of food every half hour so that takes two hours right there, plus an hour for me to get ready, another hour to get him ready (that includes dressing him, getting him in the hoyer lift and transferred to the wheelchair, then he pees again and I have to start all over, lol and take him back to the bed, change him, change all of his clothes, etc.), then clean him up and load him into the van. Once that is done, I am exhausted and we haven't even left the house! It's all good though if he enjoys it! Here are some pictures of him at the parade. I took a video too but I probably won't get that uploaded to the blog. You can see how much healthier he looks than he used to look a few years ago when he was sick all the time. His cognitive ability is just so different. He takes in so much more and really just loves life. He has grown up to be the nicest young man I could ever ask for. He is so sweet. 

A few months ago I was changing him and getting him dressed. I felt a bit rushed and I looked at him and he was watching me with those gorgeous blue eyes.  As I was putting his shirt on, he took his right arm and tried to push it up on the bed as if to help me get his hand into the armhole of the shirt. I said, "Matt, thank you for helping me get your shirt on. I really appreciate that." Matt was smiling and just beaming. I told him that he was a real "gentleman" to help me like that. I said that a "gentleman" was a man that is kind and thoughtful to a lady and helps make her life easier. I said that when he helped me put his shirt on, he was being a gentleman. Matt just loved that. So after that, he tried to push his arm up all the time now because he knows he's a gentleman and that I like it. It makes me laugh every time at the sweetness of him. 

In other news, I celebrated another birthday this week. My sister brought me some pink hydrangeas which are my favorite. I put them in my bathroom and it's been great seeing such pretty flowers in the morning.

And finally, it's been a bit of a rough year for me.  I've had a lot of losses in the last year. First, my hairdresser moved to Texas so I had to find a new one. I went through three different hairdressers and hopefully I've found one. I took this picture around the house last month or so. I just got my hair highlighted this week so I am a bit blonder again; I thought this photo below was a bit dark. We also changed doctors. We changed from our pediatric neurologist of 23 years to a new adult physician. I tried two different neurologists and now I am back to the first adult one. It was a difficult transition because Matt's former neurologist did such a great job and also because he knew Matthew so well. It's a bit frightening trying to get other doctors up to speed on Matthew due to his complex issues. I was lucky however that we were able to go back to his pediatrician for general care. Matt's pediatrician also does adult medicine so we were able to pick up where we left off. He's both a physician and I consider him a friend so it's great that he's able to help with Matthew. We had a ton of forms and some new equipment this year so the forms were never ending.  I also lost my Mom and one of my clients/close friends moved out of state to Texas as well. All of these people played an important part in my life so it feels a bit empty. Losing my mother was the worst by far and I must say I've been pretty down about that.
As for the house, I am enjoying living here. The neighbors are great and it's the perfect place for us. The open floor plan works great for Matt and I don't think I could have found a better place.  I had the whole place repainted last year and am making some updates.

Thank you for your concern for Matt and I.

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