Friday, March 03, 2017

The Rose

I went into Matt’s room last night to give him his 2 a.m. meds and he was smiling in his sleep. I couldn’t help but think about how beautiful he looked.
Special needs kids are kind of like roses.  When they are born, you look around and wonder why you got the rose with all of the thorns when all of the other mothers got perfect flowers. At first, all you notice are the thorns because you are constantly getting pricked and because it’s different than what you were expecting. One day, the rain falls and after the rain, the sun shines just right on the rose and you notice its incredible beauty.  You begin to pay more and more attention to the rose.  It’s different than other flowers because it doesn’t just bloom where it’s planted. It requires different soil, certain temperatures, and different nutrients or it just doesn’t flourish. After a while, you learn how to care for it.  You learn what it likes and what it needs. After many years, you don’t even notice the thorns because you learned how to handle it without getting stuck. Now, you only see its incredible beauty. The rose didn’t change over time, you did.  And that is the beauty of these children.  They are not here for us to change them, but for them to change us.

2017 Updates

I can’t believe it’s been 18 months since I’ve updated this blog, and I thank you for your interest.  It’s been a bit of a tough time but not because of Matt, since he is the “healthy one”!  Who could have predicted that, given his history!

(Here is a picture of Scott cutting Matt's hair. I didn't plan on starting with this picture however this picture moved here and I can't seem to move it elsewhere right now, lol. Scott does the hair cuts and I do the manicures and pedicures. I think Matt is spoiled!  This picture was taken on Monday.)
Most recently, I had cataract surgery.  I had an issue last September when the cat  ran under my feet in the kitchen and I dropped a dish on the counter and had lightning flashes and floaters. I went to a retinal specialist and they ruled out a retinal detachment however I had a pretty bad cataract. Unfortunately, the surgeon at that clinic wasn’t in network for my insurance so I ended up at Big Academic Medical Center. It  took a while to get an appointment, then more delays when Scott couldn’t get off work to take me to the appointments and finally, because I wore gas permeable contact lenses, I had to remove my contacts and wear glasses for two weeks so they could better measure my astigmatism.  My eyesight was so bad by that time, that I could no longer drive at night. The glasses were a nightmare because my vision is so poor that without glasses, I could not see to take a shower, dry or style my hair, put on makeup or basically do anything. Trying to care for Matt was a nightmare since my glasses were constantly falling off while I was working with him. On top of that, I was nearly legally blind in one of my eyes so things were pretty grim.  By this time it was January 1st and the nearest opening for surgery wasn’t until April.  By the grace of God, the cataract surgeon, offered to come in and do both of my surgeries in January. He wasn’t scheduled to do any surgeries on that day and offered to do one on January 16th and one on the 31st. It was the only surgery he did on those days! I was blessed!
(These are my pictures after the surgery with no glasses or contacts!!!!)

The surgeries went well!  I ended up going with premium lenses for both eyes. Basically, with cataract surgery, they can correct you for distance vision but the lenses are not available in the U.S. to give you perfect near and far vision. Your choices are great distance vision, multi-focal lenses or having one lens for distance and one for near.  If you have astigmatisms, you need to opt for premium lenses, to best correct the astigmatism. Premium lenses must be paid up front, since insurance does not cover them. Scott insisted I get the premium lenses so that I would never have to wear glasses or contacts again.  Actually, the technology in the U.S. will get you pretty close to that, but it is expected that you will need reading glasses.  I had the first eye done for distance on January 16th. It went great and I could see crystal clear. I had an Alcon AcrySof IQ Toric IOL lens put in (Phaco Emulsification With Lens Implant). The cost was $1400 per lens per eye so it cost $2800 out of pocket prior to the surgery. I went from an astigmatism of 4.0 (which is huge) to none.  Amazing.  While I could see great in terms of distance, I could not read my phone so I learned pretty quickly that I would need a different set up in my right eye. I should also note during this time, that I had to do a ton of research on all of these different lenses to determine what I wanted. Originally, one of the suggestions was to correct one eye for distance and one eye for near vision, also called Monovision. I declined since this would have driven me nuts! We had some discussion on another lens however it has not been FDA approved in the U.S. yet so I couldn’t get that lens. Ultimately, I decided to get the same lens (Alcon AcrySof IQ Toric lens) in my right eye as well however the doctor left me a little nearsighted which allows me to put on eye make up, read my phone and do computer work without reading glasses. I still need them for smaller font or to work on spreadsheets but overall, it’s been a great choice. I rarely wear glasses at all and 95% of the time, don’t wear any glasses. Amazing! I went from 20/180 (20/200 is legally blind) to 20/50 in my right eye and 20/150 to 20/30 in my left eye. I have never seen better. All of the blurriness from the astigmatism is gone since the astigmatism was totally corrected in both eyes.  All of this came at a cost however. The total billed charges were $47k for both eyes, with the insurance covering all but $3000 plus another $2800 for the premium lenses is $6k out of pocket.  The best part is that I can see pretty good, I can see clearly and am very happy.  I do have some night glare on the road so I anticipate that I will need glasses to sharpen my night vision and reading glasses for small font but overall, a huge success.  I did have some issues with the Prednisone drops they prescribed, since they caused horrible dreams/nightmares so I discontinued those and just took vitamins for my eyes along with organic coconut oil orally, along with two other eye drops and things went fine. At my 3 week check up, he told me that you would never know that I had any eye surgery at all in my left eye since it healed so well!
One last comment on the cataract surgery is that it was very unnerving! You basically are awake through the entire surgery. They do use numbing drops but I never want to do this again! I think if I had to give some tips, I would say: 1) Get the best cataract surgeon you can. There is usually one person at most of the good clinics that does all of the surgeries. That is the person you want.  You want a great outcome and there are many variables so choose the best surgeon. 2) Expect to pay for premium lenses. You will have these lenses the rest of your life, so prepare to pay a premium. If you have astigmatisms, you want premium lenses since it will give you the best vision and you will have better outcomes than if you get LRIs. 3) Do your research so you  know which lenses that you want.  The Alcon lenses have great reviews and excellent patient satisfaction levels but you need to decide the type of vision that works best for your lifestyle.
In other news, I went to my 40th high school reunion last year! I can’t believe it’s been forty years! I wasn’t planning on going but I decided to make myself get out of my little box and go! My best friend from high school contacted me prior to the reunion so I committed to going! While I am very social, I am an introvert at heart.  I not only went but made myself talk to everyone in the room! I took my high school yearbook photo and created a name tag using my high school picture and maiden name so people could recognize me better. I was afraid to go for all of the normal reasons but glad I did. I figured no one was going to look like they did in high school and I was right.  I not only connected with several people from high school but also with some girls from junior high.  Back in the old days, I walked 1.25 miles to school and we would wait at one of the girls homes who lived across from school. I also got to see many of my old friends from Concert Choir. I was in the Concert Choir and my choir partner's father was a widow and so was my Mom so they met at one of our concerts and dated for ten years! I also got to see one of my high school crushes and many other old friends. We had a class of 1000 and over 100 people came to the reunion! It was fun seeing everyone again. In the end, no one really changed.  One ironic thing was that one of the women that I went to high school with that was in several of my classes, was an ophthalmologist/cataract surgeon at Big Academic Medical Center where I had my surgery done. I didn’t see her at the reunion however I did see her when I had my eye surgery. It was great catching up with her again and turned out nice since I would see her after surgery when she was looking after her patients. 
(This is a picture of me last year with my contacts, not from my reunion.)

In terms of Scott, he had some health issues as well last year. He tore his hip and had to have hip surgery last year.  That meant that he was unable to help with Matt at all for months! If I thought it was hard before, it was even more work. I was totally exhausted. I did not get a full night’s sleep for nearly five months! Yikes! The surgery seemed to work at first however it’s nearly a year later and he is still having hip pain so I personally don’t think it was very successful. I told him to go to Big Academic Medical Center however he chose to go to a surgeon closer to home and I don’t think it worked out as well. On the downside, he can no longer lift Matthew into the bathtub (we have a hydraulic lift but he still had to lift Matt into the wheelchair and transfer him to the tub). We had to resort to sponge baths until I can get a lift system installed. They are pretty pricey however.
In terms of Matthew, there is good news and some not so good news. Overall, the blenderized diet that I started in 2011 is working well. As you may recall, I started him on Now Foods Organic Coconut Oil in 2010 to prevent colds, flu and pneumonia and in 2011, I took him off of formula and created my own blenderized diet made from whole foods, mostly organic, and blend it up in the blender. He has flourished on this diet and has been hospitalized only once in the last six to seven years. Amazing. He has not had any flu, cold or pneumonia since. We also do not get flu shots. I am however very careful not to take him out in the winter, pay attention to giving him the best food I can afford and overall give him the highest level of care. Cognitively, he is the best ever. This was by far the best decision I have every made. It gave him and me our lives back. We went from $100k-$500k in billed charges to around $10 k or so a year excluding medications.

That being said, it is an enormous amount of work. I love Matt to pieces and will care for him the rest of his life but this is also a very hard job.  Matt takes six seizure meds every six hours (different meds at different times). He is on high doses of meds to control his seizures as well as having a Vagus Nerve Stimulator implanted. He is very physically disabled and requires 100% assistance on all tasks. He needs to be rolled over at night along with positioning his arms, legs and head. He needs to be positioned in his Lazy Boy chair, which is the only chair he can sit in. While he can move his feet, you have to position his arms, hands and fingers along with the rest of his body. He uses oxygen at night. I make and blend all of his food along with cleaning him up and managing all of his medications and health needs. Scott helps too but it is a lot of work!
With regards to his health, I give him Now Foods Organic Coconut Oil to prevent colds, flu and pneumonia and noticed that it also helped his dystonia. Matt has an extremely rare genetic disorder and there are a few boys in the world with this condition and we have a  private Facebook group. I mentioned that the Now Foods Organic Coconut Oil helped with Matt’s dystonia and one of the other mother’s tried it and said it was unbelievable. She is telling everyone how well it works and helps with her son’s dystonia and now other mothers in our group have tried it an feel the same way. It is great to be able to share things that I am doing for Matt with other mothers so that their son’s don’t have to suffer like Matt.  Now it doesn’t take the dystonia totally away but it’s about a 90% improvement. Basically, prior to Now Foods Organic Coconut Oil, Matt was so tight that I could barely get his coat on without practically breaking his arms. Now you can lift his arm easily and put on his coat. This is amazing. 
On the down side of our little Facebook group, we tend to lose one to two boys a year. Most die below the age of 8. Very sad. 
One other thing that is working great for Matthew is magnesium. For a long time, Matt had severe edema (swelling) in his left foot. Nothing seemed to work. His foot was often red, swollen and hard. We had arterial and venus dopplers done in 2009 to rule out any issues and it was basically just considered positional edema.  It bothered me because I would massage his legs and feet and his foot was so hard and so cold. He loved his leg massages. Anyway, I went on the internet and found out that magnesium was great for edema with the standard dose of 400 mg.  I started Matt on a lower dose of 250 mg and talked to his doctor and we reviewed his previous blood work to check his levels. Within one week, Matt’s foot improved a lot! The first week he basically peed all of that fluid out of him, lol!  We tried going up to 400 mg but it was too much so we have remained at 250 mg a day and his foot is no longer hard or red.  It still is swollen but overall much improved. The hardness and redness has never been back. It is amazing that such a small change, could make such a big difference. I should also note that I checked with all of his doctors when I tried this and I get regular blood tests for him.

Now for the bad news. Matt is having some issues related to advanced lung disease. Essentially, he had an episode in November and last month where he has trouble breathing. We have an oxygen concentrator that goes up to 5 liters however when Matt has these episodes, it is not enough. Both times I used organic coconut oil and all of his blood tests do not show any infection at all, nor is there an elevation of any white blood cells and there is nothing out of range.  On the flip side, the new pulmonary doc thinks that because Matt does not take deep breaths, he has some lung collapse (slight).  During these times, he requires daytime oxygen as well.  Ironically, the doc does put him on two antibiotics and he seems to get better however there is not any infection on the lab work.  Matt’s previous pulmonary doc was the head of pulmonary, ICU and anesthesia however he retired last year and we are seeing a new doc there. He is over the ICU and we have only seen him once. We see him again next week so hopefully we can get some answers.  Matt has not been able to get off daytime oxygen for the last month so I am moderately concerned. Overall, he is happy and looks great so I am pleased.  He is the most delightful young man and we really have a lot of fun together.   In other news, Matt has a device called a Vagus Nerve Stimulator implanted for seizures. He will need to have the battery surgically replaced in the next six to twelve months. I am very worried since we have a new pulmonary doc who doesn't know Matthew, a newer neurologist of only two years and this will be our first surgery in the adult hospital.
And finally, I am in need of some rest and a vacation. Scott was staying here to help me with my eye surgery and to take me to all of my appointments so there hasn’t been even a few hours that I can call my own. In all honestly, I feel like all I do is work non-stop. I won’t complain because I adore Matthew, but on the other hand, some sleep would be great.
And finally, a few little updates to my kitchen. I redid the pantry a while ago and most recently added a new little tray and some crystal to my kitchen.

I removed the standard wire shelving and added tracks to the back and put in adjustable shelving. Actually, I just painted the pantry and Scott put up the racks, lol. I added some baskets and then some furniture plaques that I got from the Pottery Barn and added some red vinyl lettering to the baskets. I have one for pantry items and the other ones are for Matt's feeding supplies, towels and finally syringes. I added a pretty red apron and then purchased some new red lids for my Tupperware containers. The Tupperware containers I have had for years but opted to keep since they are the perfect size.

Recently, I ordered these crystal salt and pepper shakers from Horchow. I use Sea Salt so the holes weren't large enough. Scott drilled the holes larger for the salt and also for the organic black pepper and they work perfect. They had a crystal butter dish to match so I ordered that from Amazon. This is  just inexpensive crystal from Godinger so it doesn't break the bank however it is elegant. I found a wood tray from Target and it was the perfect addition. Everything is beautiful and functional now:)
Another look.
They had crystal lotion dispensers to match as well. I purchased two, one for hand soap and one for hand lotion. These are fantastic.  They are very sturdy and the top is great. Probably the best soap and lotion dispensers I have ever had. I just love them. I also ordered this little sink/dish drain as well. I have a double bowl since but water tends to pool on the center piece of the sink so I purchased this to hold my sponges (one for the sink and one for the cat bowls) and to store the dish rag). I cook a lot so I like to keep things neat and shiny and this partial dish drain is perfect.
You could also put the soap and lotion dispensers on a crystal tray. The bottom of the butter dish fits perfect but isn't very practical so I just set them on the counter. The tray makes them move around too much.

My kitchen tray is so pretty and functional. The other day I made some lemon poppy seed muffins in this heart shaped pan. I like making things look beautiful.

I also bought my cat Wiggles a new elevated pet feeder however since his legs are only an inch tall, I had to have Scott cut the elevated pet feeder down so it is barely off the floor, lol. It works great however. It looks nice and keeps any food or water contained and off of the wood floors. I looked at some other elevated pet feeders however while some of them are elevated, the food and water can still fall on the floor. I have had this feeder for several months now and really love it!


The house looked amazing at Christmas but I doubt I can get those pictures posted. I do post on Instagram as dreammom90. Mostly pics of my house or little projects. I am currently redoing my linen closet but need a few more things before I can post the final pics. My laundry room is 60% done but I need to hire someone to do some crown molding and that is hard to find since most don't want to take on such small projects.

A few more random pics of Matt.
That is all for now. I apologize for the delay in the postings. I am just a tired Mom without much of a break. Thank you again for  your interest in Matthew and I. I really miss blogging. I can't believe how much money there is to be made for blogging now.  I looked at one website and the woman was averaging $40k a month!

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.

Thursday, September 25, 2014

New Wheels!

Last week Scott surprised me and told me he wanted to buy me a wheelchair van for Matt.  At first I was reluctant however he really wanted to do this. As you know, we've needed a wheelchair van for quite some time.  I gave up my career many years ago to care for Matt and I just couldn't afford one. Last year, I purchased a ranch townhome for us but I couldn't afford to do that and get a wheelchair van. I finally agreed and the only request I had was for a rear entry van. The bulk of the vans are side entry and if someone parks next to you, you can't get the person in the vehicle. Rear entry vans are a little harder to find.
We made an appointment at a dealer that specializes in used wheelchair vans. Wheelchair vans are regular vans that have been "converted" by  companies that specialize in wheelchair conversions. Essentially, they lower the floors and install ramps that can be manual or automatic. You also have to bring the person in with their wheelchair so they can measure the width of the wheelchair and the height the person requires. Matt's a tall guy with a large wheelchair so he needs more width and extra length for his long legs.(He got those from his Mama, lol.)
We found a 2006 Dodge Grand Caravan with a rear entry automatic ramp.  Here is a photo of the interior the day we brought it home.

Here is a photo of the ramp.

After he purchased it for me, he brought it home and took it in to be detailed (The first photo is after we left the dealer and before he took it in for detailing.). He likes to get this special clay wax done on his cars. I thought it looked pretty nice when we got it (see the pictures above) but it looked even nicer once that was done. He purchased some Weather Tech floor mats for it and then got the oil and transmission fluid changed. (You can see the Weather Tech floor mats in the interior photo above. He did this as soon as we got home, lol.)  The clay bar was a couple hundred dollars! Yikes! He spray painted the ramp black and touched up the undercoating on the van. It looks amazing! Then he filled up the car with gas and brought it back. More importantly, now I can take Matt places! There is actually room for two wheelchairs in the van. My Mom is in a wheelchair so it will be great to take her and Matt if I need too.

It's not only great to take Matt places but makes it a little easier on me. Previously, Scott came over on Mondays so I could run errands while he gave Matt a bath.  I'd have to run all of my errands in one day plus work. It was a lot. Now, I can spread them out a bit.  I took Matt on our maiden voyage yesterday (see photo above) and went to see my Mom at the nursing home. Today we went to the doctor.  I am looking forward to going to the Arboretum this fall. I am going to get a membership so we can go more often. That is my favorite place to go in the fall. The van will also be good when I look into day programs again next year.  There really isn't much for guys like Matt however now that I have transportation, that may open the door to some other programs. I am also excited to do some simple things with Matt, like take him to the grocery store with me. It's been seven years since I've been able to do this and it's just nice to go into the store with my son and have your family with you. I know other people take it for granted but I can't wait to do this. I love Matt so much and it's going to be wonderful to take him places so people can meet him. I've been talking about him for years and now people can see and meet him. I can't wait.
This all came up pretty fast so last Tuesday we looked at vans and found this one. On Wednesday, I cleaned my car up and sold it.  I sold it in under 5 minutes!  I was vacuuming my car and the lawn maintenance guys came to do yard work (the homeowner's association hires them) and I thought they might have an interest in the vehicle  so on a hunch, I just wrote a handwritten for sale sign and stuck it in the windows and 5 minutes later they knocked on my door and said they were interested. They came back later to pick it up so it saved me from having to list it on Craigslist. It worked out great for both of us!  Last Friday, we had to take Matt to a doctor's appointment then we went to pick up our new van.  There was another seat in the back that folded down however we had it removed so we could get Matt in the back easier. It's been a very busy week to say the least!
Overall, I love the new van. I especially love the color. It's really pretty.  It drives really nice and it's great to be able to take Matt places! We love being able to take Matt out. It's great for Matt too! I thought it was really nice of Scott to do this. You hear about a lot of bad Dad's but you don't hear too many stories of the really good ones. Scott is a great father and he is good to me too. Not many ex-husbands insist on buying a van and putting the title in  your name. Anyway, it's wonderful to get out and around again. I had to move some things around in my garage in order to get the van in there since it's so long. I never thought I'd be driving a minivan but at some point, we really needed a van to get Matt around. I've never been so excited to get a car since it was really needed. I teased Matt and told him his Dad bought him a car for his birthday (November). Scott added that there was room for "two" wheelchairs, one for Matt and one for a lady friend, lol.  Matt just smiled.  He's such a great kid. 

Wednesday, September 24, 2014

Gallbladder Update

It's been a while since I did an update but it's been really busy here.  I can't tell you how much I appreciated all of your comments after our hospitalization in July.  We left the hospital with a bilary drain bag to drain the bile from his gallbladder. As you may recall, Matt was admitted to the hospital last July for breathing issues and it was found that he had a gallbladder infection. They believe the gallbladder infections/swelling pressed up on his diaphragm and collapsed his lung and then he got a pneumonia as well and was on a ventilator briefly. When the antibiotics weren't working, they did a CT scan of the abdomen and found the gallbladder issue. They put in a bilary drain immediately and that routed the bile out of the gallbladder. The gallbladder was sluggish with the infection so they don't want more bile in there. Re-routing the bile gave the gallbladder time to rest and they were able to get rid of the infection. While they can't be sure the gallbladder infection came first, it seems most logical since he hasn't been hospitalized for pneumonia in almost five years since I changed his diet and added Now Foods Organic Coconut Oil. Can you believe that? Almost five years without a hospitalization? Still exciting to write that!

Anyway, the bilary drain stayed in place for six weeks and I had to track all of Matt's bile discharge for that time. I also track his urinations and bowel movements. The bag was challenging to work around especially when changing Matt's diaper since it kept falling off the bed and I was worried it would come out.  (You can see the bilary drain bag in the above photo. This photo is from August 25th.) We were told that the drain would be removed in six weeks however when it came time to remove it, interventional radiology informed me it would be changed and not removed. It took 20 phone calls and finally I thought everyone was on the same page for removal however that wasn't the case. The hospital has some serious communication issues and I won't go into detail because it was such a stressful time but the bottom line is that the drain was removed.
As I mentioned, I wasn't given any instruction when I left the hospital. I went online at to see what foods were recommended.  Essentially, it's a low fat diet. There wasn't any foods that I was giving him that weren't on the recommended list with the exception of eggs. That appears to cause problems for many people. I should mention that Matt did not have gallstones nor do we have any family history.  They also recommend a diet rich in Medium Chain Fatty Acids and recommend coconut oil. Check! They do caution not overdoing the coconut oil with a gallbladder infection but overall I was doing most everything right.  I should also mention that Matt did not have any gallstones or family history and they do not believe his issue was diet related at all since his mostly organic blenderized diet is so healthy.  During this time, I also spoke with his dietician who specializes in blenderized diet to see if I needed to change anything. She said no, it's basically a low fat diet.  Matt eats whole foods, mostly organic and real fats. He eats around 1300 calories a day. Because he doesn't move much, I have to keep his calories around here or he'll gain weight. He is 6'2" and weighs 202 now and was 209 right before the infection, which was really high for him. He doesn't eat anything artificial and no soy of any kind.  I use organic kefir and real butter.  His diet is basically 50/25/25 with 50% from carbs, 25% protein and 25% fat.  I also wanted to get him on a probiotic when he got home from the hospital. The dietician had recommended one previously but I never started Matt on it. It's a powerful probiotic and after the infection, I wanted to be careful not to stress the gallbladder. I read that that to rebalance his gut bacteria after a hospitalization with antibiotics you should give them a probiotic with 100 billion after it clears the GI tract. Since I wanted a more mild probiotic, I just ordered Andrew Lessman's Ultimate Friendly Floral and gave Matt 100 billion/day for 7 days.  I'll be starting his new probiotic that the dietician recommended next week.
Other concerns I had were removal of the gallbladder. I didn't want to do this since Matt is a high surgical risk and because you need your gallbladder. I've read that gallbladder removal is linked to Type II diabetes and poor gut health. Your gallbladder is essential for processing fatty acids and for a guy like Matt where nutrition is essential for good cognitive health and for his central nervous system, I was against gallbladder removal.  In my opinion, old school advocates removal and current opinion, or at least those people that value nutrition, feel it's criminal to remove the gallbladder. Certainly there are people who are functioning without a gallbladder however if you do some additional reading on it, there can be issues with diarrhea, etc. after removal. I  want the absolute best for Matt and that means optimal nutrition. Unless we have another serious issue, I want to keep his gallbladder.
Other questions I had regarding Matt's issue was whether or not it might be related to his progressive neurological disease. Was that causing the sphincter of oddi to malfunction? (The sphincter of oddi is a muscular valve that controls the flow of digestive juices (bile and pancreatic juice). Matt's disabilities were caused by the ARX gene mutation and there are issues related to pancreas due to the gene mutation however other than that, not much research has been done since there are such few diagnosis. No one seems to be able to answer this.
During this time, I also was referred to a book on Irritable Bowel Syndrome. While Matt doesn't  have irritable bowel syndrome, I found it helpful since it covers digestive issues in general. Of specific interest to me was the allergy testing. I had asked for some allergy testing on Matt over  a year ago and we had set up an appointment with an allergist and then cancelled it when Scott injured his back and couldn't lift him into the car for the appointment.  I am unaware of Matt having any allergies however since Matt is nonverbal, I thought it might be prudent to have some allergy testing done to see if he had an allergies. After his recent gallbladder infection, and after reading this book, I decided to ask for allergy testing.  As a precaution, I always keep Benadryl in the house in case Matt ever had an allergic reaction to anything and I knew I would feel better if I had some allergy testing to rule out any allergies. I'd hate to find out I've been feeding Matt a food that he's allergic to! In addition, a few days prior to his admission, I had tried a new food for Matt. I had some organic jam so I gave him a peanut butter and organic jam sandwich as part of his lunch. Was it possible that he had an allergic reaction to the peanut butter? (The peanut butter was all natural, just peanuts and oil however any high fat food like peanut butter can trigger a gallbladder attack.)
I met with his GI doc today. He doesn't believe the peanut butter caused anything. I discussed my concerns over the allergy testing and he agreed to do the blood testing for foods that Matt eats regularly. We had testing done for rice, tuna, gluten, peanuts, beef, egg white and egg yolks. We'll get results in a week or so. Normally, I feed Matt the following organic protein sources each week: organic chicken, organic beef, organic black beans, albacore tuna, organic eggs (from a high quality source-check the Cornicopia Institute for their ratings) and then I'll usually do a soup or repeat some of the sources. Other than that, the GI doc didn't recommend any other changes. I hope the test comes back normal however I'll have some peace of mind either way. I'd hate to be giving him a food that he eats regularly and find out he's allergic to it!
Matt appears to be doing pretty well. One interesting thing that happened after he was released was that all of his coughing and saliva issues stopped.  He's had issues with saliva for years and as you may recall, he had botox injections in 2009 (unsuccessful) and we had extensive conversations about surgical removal of his parotid and submandibular glands to reduce secretions.  Ironically, not only did all of his coughing and saliva stop, but I didn't have to use his suction machine for six weeks.  I used to use it daily. I also had to do nebulizer treatments once a day and sometimes I could skip a day or two but I could never go more than three days without it.  Since July 18th, I've only used the nebulizer twice. This is amazing. We are hopeful that this issue continues to resolve the saliva issues however I am sure that may not be the case.

In summary then, Matt is doing quite well now. I took this picture at our doctor visit last Friday. You can see he's lost some weight however he looks pretty good overall. I have to work harder than most to keep him healthy since his body just doesn't work like most people's. He continues to be a really happy guy and I am thrilled he's feeling better.
I have some more exciting news to share with you tomorrow!
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