G&G

Last week my grandparents ("G&G" as we like to refer to them) came down from Minnesota to spend some time with Mom, Chandra and me. One of the major reasons for their trip was to come for my mom's birthday. Her birthday was earlier this month, but my she's been celebrating the entire month, which you're allowed to do when you turn in the big 6-0!! It was great to see Grandma and Grandpa again. They usually visit us twice a year, but now that they're getting older, I don't know how much longer these semi-annual visits will be able to continue, especially with them living so far away. SO, I tried to make the most of our time together.

We enjoyed watching the presidential debate and the Cardinals baseball playoff games together. Grandpa liked my TV and remarked how much better he could see things on my TV since it's a bigger screen than what he's used to (that, and the HD reception). :) 

On Thursday G&G, Mom, Chandra and I went out to lunch at Ruby Tuesday to celebrate my mom's birthday. It wasn't busy at all and there was plenty of room for me and my big caboose (a.k.a., my wheelchair!). The food was really good and we all had a nice time. Our waitress asked if we were celebrating anything special, and my mom said, "my birthday!!" Mom told our waitress that she'd been celebrating her birthday all month long. The waitress brought out a huge piece of cheesecake with a bunch of spoons. The cheesecake was amazing;! Sao creamy and smooth and very rich! We kept passing the plate around the table until it was gone.

Here are some pictures. (It was an extremely windy day, and we got mighty windblown going in and out of the restaurant, so excuse our messy hair!) 

I'm so grateful to be blessed with such wonderful grandparents. I'm especially close to my grandpa. He's a great man and I think the world of him. Every time my grandparents leave to go home I can't help but wonder if it'll be the last time I see Grandpa. He's 90 and still in excellent shape for someone his age, but he's started slowing down. He went grocery shopping with my mom when he was here and when he was helping my mom with the groceries he told her that he could no longer carry two gallons of milk in one shopping bag anymore, because it's too much for one arm to handle. That's a big decline from a man who was still doing 100 push-ups every day just a few years ago. (Here's a picture of Grandpa… isn't he cute?!)

Grandpa told my mom that he feels like he's slowed down since our family reunion celebrating his 90^th birthday six months ago, and he asked her if she thinks he's declined since then. I've noticed that he sleeps more often these days. As my mom says, "if you live long enough, you get old." That's the unfortunate truth of the matter! Mom also said that even though she's old, she's still not ready to say goodbye to her dad. I know how she feels because I'll feel the exact same way about her in 32 years when I'm 60!

As I think about death/dying and losing loved ones, I'm so grateful for my knowledge that there's life after death and we'll see our loved ones again. It would be a much sadder without this knowledge.

This is an orchid that my grandpa bought at the grocery store while he was here. I absolutely LOVE orchids, so my mom said we could keep it in my room. My mom certainly has green thumbs, so I hope she can keep it alive!

FAQs: My Diaphragm Pacer

When I was in my car accident, I broke my neck at the second cervical vertebrae, so the break was very close to the top of my spinal column. This meant that I lost control of all of the muscles from my neck down, including the diaphragm muscle in the abdomen that is used to breathe. So after my accident I was put on a ventilator—a machine that is hooked up to a person's tracheostomy tube (trach) and pumps a breath of air into the person's lungs a certain number of times a minute (approximately 12 to 14).

I was on a ventilator for the first three years after my accident, and I actually never thought I would ever get off of the ventilator. After my accident I heard about Christopher Reeve getting a diaphragm pacer and I knew that I'd like to get one, although I didn't think it would ever be a real possibility for me since they seemed so few and far between. However, I decided to ask my doctor about it anyway to see what she knew about them. She didn't know much, but she did manage to track down the name of the doctor who performs the surgery to implant the diaphragm pacer electrodes on the diaphragm. She called him to inquire about the diaphragm pacer on my behalf.

[A little background history on the diaphragm pacer: The technology of diaphragm pacing has actually been around since the 1970's, but at that time electrodes were placed on the frenic nerve. In 2000, Dr. Raymond Onders developed a method of laparoscopically implanting the electrodes used for pacing on the diaphragm itself, instead placing them on the frenic nerve. Dr. Onders' laparoscopic method of implanting on the actual diaphragm was much less invasive, and had other benefits, too, but don't ask me to explain them, because I'm no doctor!]

When I first inquired about the diaphragm pacer back in 2006, Dr. Onders was the only doctor in the world who performed the surgery. He practices medicine in Cleveland, Ohio, so after finding out that he was so far away from me (near St. Louis, MO), I pretty much gave up any hope of ever having this procedure myself since I really wasn't in any position to travel hundreds of miles to Cleveland.

About a week or so after I asked my doctor about the diaphragm pacer, my mom got a phone call from Dr. Onders. I thought it was impressive that Dr. Onders took time out of his busy schedule to answer all of my mom's questions—like what the diaphragm pacer was, how it worked and if I might be a candidate for one—and talk to her for over an hour. Everything sounded so promising, so we didn't have to think about it too long before deciding that we were going to do it! I knew it would involve a long road trip to Cleveland (10 hours one way), which was daunting since at that time we'd never attempted taking a road trip since my accident. However, getting a diaphragm pacer was too good of an opportunity to pass up, so we started formulating a game plan of how to make all of the logistics of travel and staying in hotels work. Just two months later we set off on our way to Cleveland. (My mom went with me, of course, as well as my youngest sister, Chandra. We knew that we would need another adult to go with us, so we called my older sister, Annette. She didn't have any children at that time, so she was able to come with us without having to leave a bunch of young kids behind, like my other older sisters.) 

I had the surgery to implant the electrodes on my diaphragm on November 17, 2006—the third anniversary of my accident. (I thought it was really cool that I was able to have the surgery done on the anniversary of my accident—what a wonderful way to celebrate my anniversary!) My mom, sisters and I were taught about the pacer and how I had to slowly condition my diaphragm muscle to be able to withstand pacing for long periods of time. (The diaphragm is a muscle, so it needed to be strengthened and gotten back into "shape" since I hadn't used it in three years.) The training process is kind of difficult to explain, so to make this long story shorter, I'll just say that everything was extremely successful, and I went from being 100% dependent on the ventilator, to transferring over to the diaphragm pacer 100% of the time in eight days. That was a record for the female patients at the time. I'm not sure if that record still stands, though.

People often ask if I have to go back on a ventilator at night, and the answer is no. I'm on the pacer 100% of the time and have been ever since I transitioned over to the pacer. (With the exception of one time when I was hospitalized due to complications that I experienced after having surgery to remove kidney stones, but that was just for a week while I regained my strength.) People have also asked if I can breathe without my diaphragm pacer (or ventilator) and the answer to that is also no. I am unable to breathe on my own, and am completely dependent on either a ventilator or the diaphragm pacer to breathe for me.

I've become much more adventurous since getting the diaphragm pacer. I wasn't very motivated to leave the house after my accident. I was happy and content to stay at home, since that was the place I felt the most comfortable. I didn't like going out in public unless it was absolutely necessary because I felt awkward out in public. I went to church every week and to doctor's appointments and occasionally to the store, but I really just preferred to stay at home.

After my accident I vowed that I would never go to Wal-Mart or the mall again. To me, that would've been the epitome of torture! I hated having all eyes on me, feeling like I was in the way of others as I tried to maneuver around tight, overcrowded aisles, all in addition to the thought that I might run into someone I knew before my accident. But over time I slowly started to venture out again and try new things. I was especially nervous the first few times I actually ate in restaurants or rolled through the mall and things like that. However, things got better as I went out more. I'm sure I would've gotten to the place of being more adventurous eventually, but getting off of the ventilator was definitely the catalyst. I just felt more normal-looking and confident, since there were no longer tubes going across my body that attached to the trach in the center of my throat, and no more ventilator to lug around, either. I know that I will obviously never look physically normal again, but ditching the noisy, conspicuous vent/tubes really did do wonders for my confidence, and it opened doors that I'd chosen to close.

I mentioned earlier that Christopher Reeve had a diaphragm pacer and that's where I first heard about it. Christopher was the third patient that Dr. Onders did this laparoscopic electrode implantation procedure on, and I was the 42nd. It was not FDA approved at the time I got it done, and I was actually part of the FDA study. Back in 2006, Dr. Onders was the only surgeon in the world who performed this surgery. After the diaphragm pacer became FDA approved more and more surgeons started doing this procedure, and now there are lots of surgeons that perform this procedure in dozens and dozens of hospitals/facilities all across the world. I'm happy that word of the diaphragm pacer is spreading so that more people like me can benefit from it and have a healthier, better quality of life.

The diaphragm pacer is made by Synapse Biomedical; visit their website to find out more information.

Making It Work

In one of my recent posts I wrote about home health services and who cares for me on a day-to-day basis. So in this post I thought I'd write about who's helped care for me over the years since several people have asked how I manage to get by since I don't have paid nursing care.

I'll start by saying that my main/head caregiver is my mom and that she's the only constant thing in my life when it comes to my caregivers. She's been here for me every step of the way and I know that she's not going anywhere barring some unforeseen dilemma, like her becoming ill, incapacitated or her becoming too frail to care for me. (I know there'll eventually come a day when she won't be able to care for me any longer and I don't know what I'll do at that time, but for now, it's us against the world.

I've had several wonderful friends and family members that have come and gone over the years and have been here to help for short periods of time to help shoulder the burden. My youngest sister Chandra has been here pretty much every step of the way along with our mom, although Chan didn't help with my care all that much at first.

After my accident I was in the hospital for seven weeks and then I went to rehab in Atlanta, Georgia, to learn how to live as a disabled person. It was my goal all along to get stable enough so that I could live at home and NOT be relegated to a nursing home. When I was finished with rehab, I returned home to Missouri to live in February of 2004. Taking care of me is much more than one person could handle on their own, so we had to make a plan of who would help my mom take care of me. Annette, one of my older sisters, agreed to move home to help Mom care for me (more about that in a minute), but she wasn't going to arrive until April, so that left a two month period when Mom and I would need help.

February 2004 – April 2004: During these months different ladies from my church would come over each weekday morning to help my mom bathe me and get me dressed and up for the day. This put me in a very awkward position having these women who'd known me as a normal, 19-year-old person just a few months previously now being responsible for helping with my intimate care. Although I was extremely grateful for their help, it bothered me having them see me in a such a vulnerable, helpless state.

In these two months I became close to two of my helpers; Linda, a lady from church that lives up the street, would come once or twice a week to help Mom get me dressed (she comes into play again later in my story), and Britney, another friend from church, who would come over a few days a week so that my mom could get out and run errands.

I met Britney at church a few months before my accident and we really hit it off. She was 10 years older than I was and we bonded over nursing (I was in nursing school at the time and she was a nurse). She'd recently moved to the St. Louis area with her husband who was here for a 2½ year orthodontic residency. It was so wonderful to have help from Linda and Britney since I really liked them and felt comfortable with them, instead of some of the other ladies from church who felt like strangers to me even though I'd known most of them for years. When my sister Annette moved home she took over for all of our other helpers and she and our mom took care of all of my care by themselves.

April 2004 – March 2005: Initially, it was my mom and older sister Annette who cared for me. Annette had graduated from college and was living on her own in Utah where she worked. After my accident she decided to move back home to help Mom care for me. I've never been in her position, but I imagine it was very difficult for her to move home after being out on her own for so many years. But after a lot of thought and prayer she decided to do what she felt was right, even though it was difficult.

The first year after my accident was the most challenging year of my life. Thankfully, I didn't realize how hard it was at the time, but now that I look back I realize just how difficult it was as I settled into my new life. I was extremely grateful for Mom and Annette, and as we settled into my new life we established a routine and things gradually got easier.

A few months after Annette moved home she met her future husband, Joseph. They became engaged and got married at the end of March in 2005. I was very happy for Annette and didn't begrudge her getting married one bit, but it did put Mom and me in a pickle again as we thought about who could help us.

Jan 2005 – June 2007: A few months after Annette got married and moved away our oldest sister Miriam and her family moved from Texas to St. Louis.  They say that the Lord moves in mysterious ways, which I know to be true because having Miriam's family not only move to St. Louis, but move to the same neighborhood that my mom and I lived in was a definite answer to prayer. Miriam was able to come down a few mornings a week to help our mom get me dressed and up for the day, and then Miriam would stay with me while Mom went out.

Linda (the friend from church that lives in the neighborhood that I mentioned earlier in this post) started helping again in 2005 after Annette moved. Linda would come down three mornings a week to help my mom get me dressed on the alternate days of the week when Miriam didn't come down. I'm so grateful for Linda because she's fun, she's helpful,… she's a saint!

June 2007 – January 2010: After living here for two years, Miriam's family moved away to Oregon in the summer of 2007 so that her husband could finish up his PhD. Mom and I were again faced with the predicament of needing assistance, so we had to find someone to help when Miriam had been coming over.

My youngest sister Chandra was still living at home and had just graduated from high school and would be starting college in the fall. She'd earned free tuition at a local community college, so her plan was to live at home and commute to school. Her classes were on Mondays/Wednesdays/Fridays and she was off on Tuesdays/Thursdays, so I "hired" her to work for me to be one of my care attendants. This was a mutually beneficial situation for Chandra and our mom because Chan could earn money while going to school without having to get a job outside of the home, and help our mom with my care on Tuesdays and Thursday mornings.

January 2010 – August 2011: After Chandra finished her Associates Degree she decided to get a full-time job. Now that she was working she wasn't able to help on Tuesday and Thursday mornings anymore. But it wasn't long before someone else fell into place to fill the void… Lara, a young girl I knew from church that went to the same local community college that Chandra had been going to. For the next 18 months she'd come over two or three mornings a week and this worked out really well for Mom and me.

My older sister Kristin and her family lived with Mom and me for five months in the latter half of 2010 after her husband graduated from grad school while he was looking for a job. While Kristin was here she helped our mom with my care in the afternoons. It was so nice to have her help and I will always remember the grand times the three of us had while doing my bath in the afternoons. Although this was only a "temporary fix" since it was only for five months, but it was a blessed time!

August 2011 – present: When our helper Lara graduated with her two-year degree she decided to transfer to a university a few hours away. Mom and I again faced with the problem of needing help and we had to find someone that we could enlist to help with my care. It wasn't long before the Lord made a way for Mom and me to have the help that we needed. Kellie, one of our friends that we know from church offered to come over to help my mom get me dressed and up for the day three mornings a week when she found out that we needed help. Friend and neighbor Linda has also been consistently helping Mom since 2005, too, so Kellie and Linda are the ones that are currently helping Mom get me ready in the mornings.

Laura, one of my younger sisters, has also helped with my care over the years. I "hired" her shortly after she got married and she'd come down two or three afternoons a week to help Mom with my afternoon routine. She did this for about four years, but had to take a "leave of absence" from caring for me earlier this year because her life 's gotten a little too busy now that she has little two kids and has recently gone back to school. Laura's help was another temporary fix, but it was great while it lasted.

One of the major themes I hope you take away from reading the long rundown of the evolution of my care over the years is that God knows me and He knows of the trying times that my mom and I often find ourselves in, in regards to needing help and not having a permanent fix in place.

In this post I said that my mom's ideal solution to our situation would be to have all of my sisters live here locally so that they could all help Mom with my care. This hasn't happened, but at least most of my sisters have lived here at some time or another and have been able to help. Sharon is my only sister who's never been able to live here and help on a consistent basis, and she recently told me that she feels like it's her turn! She said she's sad that she's never had the opportunity to live here. I'm crossing my fingers that her husband will eventually get a job here, but that seems like a long shot since they seem firmly planted in Mississippi, but only the Lord knows for sure!

The next test of faith is going to be what Mom and I will do after Chandra gets married and moves away. Her plan is to get married next June and although I'm happy for her, I'm absolutely dreading that for myself! I'll miss her friendship and all of the service and help that she provides Mom and me with (especially since she's the one that does all of my beautifying!). I've just got to remember to have faith and know that something will work out!

I'm so grateful to belonged to a church where service is so important because all of the friends that have helped my mom and me over the years have them from church. I'm also thankful for my kind and loving family. I love this quote that says, "God notices us, and He watches over us. But it is usually through another person that He meets our needs." I often find it scary to press on in this trial since I'm not sure what will happen to my mom and me in the long run, but I know that God knows me and that He's not going to leave me hanging. I definitely wish I could see the "whole picture" to know what will become of us, but I take comfort in my confidence that the Lord will provide.

Annette's Birthday

My sister Annette celebrated her 33^rd birthday while she was here visiting. It was fun to be able to celebrate her birthday with her since we live far apart and don't get to celebrate too many birthdays together in person.

Here's Annette in the new dress that Joseph got her for her birthday:

Above are pictures of the kids in the spider hats they made with Kellie while she watched them when Annette and Joseph were out with my mom and me that afternoon. Below are pictures of Annette opening presents and blowing out the candles on her chocolate truffle cake. So good!

New Quilt 'a la Annette

My sister Annette has a talent for making quilts, and she's made them for herself and her family, as well as for gifts for other people for special occasions, myself included. Earlier this year I asked her to make me a new quilt and she was sweet enough to oblige me and she's been working on it for the past few months. She surprised me with it when she came to visit a few days ago. Isn't it lovely?! I absolutely love it and it should help to make the chilly winter weather more bearable!

The pictures don't really show what the colors truly look like, but you get the gist of it.

A close-up look of two of nine patch squares:

Here you can see the back of the quilt and the flower-shaped pattern that my sister hand-quilted. (Yes, HAND-quilted… every stitch by hand!):

And finally a double-sided pillowcase to match: