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!

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