shecolt

The "Real Life Happens" Support Thread

81 posts in this topic

It has now been three months since my granddaughter's transplant and I am happy to say that she continues to do well.  However, she does have a problem with wanting to pull out her NJ tube which requires another trip to Riley as no one here is qualified to reinsert it.  

 

However, the main reason I am posting today is because I have something that I want to share.

 

A year ago, I wouldn't have even known what a multivisceral transplant was.  If anyone had told me they needed one, I probably would have responded to say that I didn't know that I had a multivisceral and asked where it was located in my body. 

 

I have also learned how fortunate we are to have Riley and IU Health.  If not for them, my granddaughter and her family would have had to relocate just to be put on a transplant list.  However, I assumed that these hospitals were no different than any hospitals that can be found in any major cities.  

 

That is why I wanted to share this video.  If you watch it, you will see the story of a man who relocated here to have a multivisceral transplant and how IU Health is only one of two hospitals in the country who would accept someone like him.

 

 

 

 

 

8 people like this

Share this post


Link to post
Share on other sites
On 2/25/2016 at 9:33 AM, teganslaw said:

 

So, when you think you're getting ahead, "life happens" and you're back to square one.

Yeah, for sure. I have to work 2 jobs and sell on ebay just to pay my bills. But I'm not looking for sympathy, it's just the way it goes. At least I have my health, and no ex's to make my life miserable. 

1 person likes this

Share this post


Link to post
Share on other sites
On June 16, 2016 at 11:24 AM, shecolt said:

It has now been three months since my granddaughter's transplant and I am happy to say that she continues to do well.  However, she does have a problem with wanting to pull out her NJ tube which requires another trip to Riley as no one here is qualified to reinsert it.  

 

However, the main reason I am posting today is because I have something that I want to share.

 

A year ago, I wouldn't have even known what a multivisceral transplant was.  If anyone had told me they needed one, I probably would have responded to say that I didn't know that I had a multivisceral and asked where it was located in my body. 

 

I have also learned how fortunate we are to have Riley and IU Health.  If not for them, my granddaughter and her family would have had to relocate just to be put on a transplant list.  However, I assumed that these hospitals were no different than any hospitals that can be found in any major cities.  

 

That is why I wanted to share this video.  If you watch it, you will see the story of a man who relocated here to have a multivisceral transplant and how IU Health is only one of two hospitals in the country who would accept someone like him.

 

 

 

 

 

I don't live in Indianapolis personally, but it's nice to hear that the Hoosier State is so ahead of the innovation curve medically speaking. Wow, I had no idea a medical staff could transfer multiple organs successfully at once & we are talking major organs here--liver, heart, intestines etc. etc. 

 

That Sawyer kid from your video is a cute little guy too. I am glad to heat that your granddaughter is recuperating well BTW SheColt. 

 

Thanks for sharing your story as well as the attached video. 

1 person likes this

Share this post


Link to post
Share on other sites
36 minutes ago, ColtStrong said:

Yeah, for sure. I have to work 2 jobs and sell on ebay just to pay my bills. But I'm not looking for sympathy, it's just the way it goes. At least I have my health, and no ex's to make my life miserable. 

I hope your life gets a little easier CS. I admire that you are so positive regarding your situation & that you are in good health. Hang in there my friend. You're a good guy & I never want people I like to suffer or struggle in any way, shape, or form. 

 

Maybe unexpected good fortunate is headed your way CS. I sincerely hope so. 

2 people like this

Share this post


Link to post
Share on other sites
5 minutes ago, southwest1 said:

I hope your life gets a little easier CS. I admire that you are so positive regarding your situation & that you are in good health. Hang in there my friend. You're a good guy & I never want people I like to suffer or struggle in any way, shape, or form. 

 

Maybe unexpected good fortunate is headed your way CS. I sincerely hope so. 

Thanks for the kind words. You are truly one of a kind here.

2 people like this

Share this post


Link to post
Share on other sites
51 minutes ago, ColtStrong said:

Thanks for the kind words. You are truly one of a kind here.

Anytime CS anytime. Not to get too philosophical in nature, but I've always been taught to judge individuals not by their occupation or how much money they may have, but how they treat others they encounter in life. 

 

I place value on kindness & treating strangers with decency & humanity. I appreciate your nice words on my behalf as well. Thank you. 

 

Just remember that there are people out there who place a premium on making individuals feel worthwhile that has nothing to do with fancy threads, stylish cars, & a fat bank account. You're alright CS & real worth can never be measured in materialistic possessions. I like you man & I meant it. Take care. 

2 people like this

Share this post


Link to post
Share on other sites
28 minutes ago, southwest1 said:

Anytime CS anytime. Not to get too philosophical in nature, but I've always been taught to judge individuals not by their occupation or how much money they may have, but how they treat others they encounter in life. 

 

 

Then please join my discussion on another thread. I would LOVE your input.

Share this post


Link to post
Share on other sites
4 hours ago, ColtStrong said:

Yeah, for sure. I have to work 2 jobs and sell on ebay just to pay my bills. But I'm not looking for sympathy, it's just the way it goes. At least I have my health, and no ex's to make my life miserable. 

I love your attitude, and yes, there is a lot to be said for being in good health.   We've had so many friends recently hit with very serious illnesses, and it makes you stop and think and appreciate what is truly important.

 

 

5 people like this

Share this post


Link to post
Share on other sites
17 hours ago, ColtStrong said:

Then please join my discussion on another thread. I would LOVE your input.

Sure, I'll take a peek at it sometime today & give you some feedback CS. 

Share this post


Link to post
Share on other sites
20 hours ago, ColtStrong said:

Yeah, for sure. I have to work 2 jobs and sell on ebay just to pay my bills. But I'm not looking for sympathy, it's just the way it goes. At least I have my health, and no ex's to make my life miserable. 

 

Yeah. Can't enjoy life without basic health, it doesn't matter how much money you make. Yes, money does help deal with health issues better but prevention is better than cure. I hope your life gets better as time goes on.

 

Long back, when I was growing up, I saw an analogy explained in a movie where the actor points to a few dark spots on a large clean wall and asks a lady what she sees. She says "the dark spots". He then tells us "you don't see all the clean areas around it?". Life is like that, we can get hung up on the dark spots on the large clean wall. I have to remind myself of that when my family or I have any transient health/financial issues. It is easy to get sucked up in the darkness. :)

 

 

3 people like this

Share this post


Link to post
Share on other sites

@shecolt - Your granddaughter is beautiful!!! My prayers for your family and wishing her a great recovery and continued good health.

3 people like this

Share this post


Link to post
Share on other sites
On 7/6/2016 at 5:52 PM, southwest1 said:

I don't live in Indianapolis personally, but it's nice to hear that the Hoosier State is so ahead of the innovation curve medically speaking. Wow, I had no idea a medical staff could transfer multiple organs successfully at once & we are talking major organs here--liver, heart, intestines etc. etc. 

 

That Sawyer kid from your video is a cute little guy too. I am glad to heat that your granddaughter is recuperating well BTW SheColt. 

 

Thanks for sharing your story as well as the attached video. 

 

Thank you for your kind words and for watching the video.  Since I've often thought that the hospitals in the very large, major cities are the most innovative/cutting edge; I was proud to see what IU Health was doing . . . even though I obviously have nothing whatsoever to do with it.  

 

I'm sorry to say that Sawyer has not been doing as well as my granddaughter.  He was second on the list if the organs had not been compatible for my granddaughter.  However, he did receive his liver transplant a few days later.  

 

One would think that my granddaughter would have had a rougher time given that she received a transplant of five organs.  However, transplants such as hers have a higher success rate.  

1 person likes this

Share this post


Link to post
Share on other sites

Its funny That Riley has been mentioned here, which ironically, I just got out of their Hospital on Friday Afternoon.  I was born with a rare congenital heart defect called Tetralogy of Fallot.  Needless to say, from a very young age, I have had to have multiple bypasses and an open heart surgery repair.  Fast Forward some 29 years and I found myself sitting in the pre-op room with my wife getting ready to have a heart cath.  While these are seemingly routine nowadays, it doesn't make it any less nerve-wrecking for myself or my family, but once again, Riley is an amazing hospital.  Long story short, what was supposed to be a 3 hour procedure took five but I left the hospital with a brand new heart valve and my heart pressure was literally cut in half.  My wife asked me a couple of times if she thought it was weird being at a childrens hospital and while it wasn't; I felt for all those families who have little ones there who were in way worse conditions than mine.  

 

So in closing, as I left Riley Friday afternoon, I can honestly say; that hospital has been a lifesaver for me and for alot of people here and it is an amazing place, filled with amazing people who are more than willing to do what they can to help you out.

 

Ironically enough, they day I had the procedure, the cardiologist I had as a young boy retired from Riley.

 

 

6 people like this

Share this post


Link to post
Share on other sites
On ‎6‎/‎16‎/‎2016 at 0:24 PM, shecolt said:

It has now been three months since my granddaughter's transplant and I am happy to say that she continues to do well.  However, she does have a problem with wanting to pull out her NJ tube which requires another trip to Riley as no one here is qualified to reinsert it.  

 

However, the main reason I am posting today is because I have something that I want to share.

 

A year ago, I wouldn't have even known what a multivisceral transplant was.  If anyone had told me they needed one, I probably would have responded to say that I didn't know that I had a multivisceral and asked where it was located in my body. 

 

I have also learned how fortunate we are to have Riley and IU Health.  If not for them, my granddaughter and her family would have had to relocate just to be put on a transplant list.  However, I assumed that these hospitals were no different than any hospitals that can be found in any major cities.  

 

That is why I wanted to share this video.  If you watch it, you will see the story of a man who relocated here to have a multivisceral transplant and how IU Health is only one of two hospitals in the country who would accept someone like him.

 

 

 

 

 

Not very often I am a loss for words. Things like this make you take a closer look at things.

1 person likes this

Share this post


Link to post
Share on other sites

Thoughts and prayers for my best friend and her family. Her 3-year-old granddaughter was diagnosed with this kidney ailment called minimal change disease. She has swelling  around her eyes and in her legs and abdomen, as her kidneys are not functioning properly. She is currently hospitalized, getting steroid treatment. She has to be on a diet that limits her fluid intake to no more than one liter daily. (I can go through that in 2 hours.)   It will be difficult for her to adjust, as she is a child but thankfully she has a strong family and a large support network. 

 

Also, prayers for the loved one of those who died in the Brazilian plane crash. Most if not all of the players on the Brazilian soccer team died. That's tragic. Rest in peace. 

4 people like this

Share this post


Link to post
Share on other sites
1 hour ago, NFLfan said:

Thoughts and prayers for my best friend and her family. Her 3-year-old granddaughter was diagnosed with this kidney ailment called minimal change disease. She has swelling  around her eyes and in her legs and abdomen, as her kidneys are not functioning properly. She is currently hospitalized, getting steroid treatment. She has to be on a diet that limits her fluid intake to no more than one liter daily. (I can go through that in 2 hours.)   It will be difficult for her to adjust, as she is a child but thankfully she has a strong family and a large support network. 

 

Also, prayers for the loved one of those who died in the Brazilian plane crash. Most if not all of the players on the Brazilian soccer team died. That's tragic. Rest in peace. 

 

I join you with my thoughts and prayers for your friend's granddaughter and those who died in the crash.

 

I know nothing about minimal change disease.  Is this something that can be handled long term with medicine and restriction of fluids?

1 person likes this

Share this post


Link to post
Share on other sites

I've had 17 surgeries all done at Riley. I have Spina Bifida. To tell you the truth I actually did not know much about Spina Bifida. I just knew that's what I had and moved on and made a life for myself. I did not know that there was multiple levels of Spina Bifida. I did not know that some can not feel anything from the waist down who have it. I'm fortunate in that respect as I have full feeling in all my extremities

 

I had to have a feeding tube as a little kid

 

I had my tendons in my legs stretched out

 

I have a shunt

 

I have clubbed feet

 

 

Many of my surgeries I don't even remember because I was just to young. All done by Riley even though I was born at St Johns hospital in Anderson

2 people like this

Share this post


Link to post
Share on other sites
16 hours ago, Gavin said:

I've had 17 surgeries all done at Riley. I have Spina Bifida. To tell you the truth I actually did not know much about Spina Bifida. I just knew that's what I had and moved on and made a life for myself. I did not know that there was multiple levels of Spina Bifida. I did not know that some can not feel anything from the waist down who have it. I'm fortunate in that respect as I have full feeling in all my extremities

 

I had to have a feeding tube as a little kid

 

I had my tendons in my legs stretched out

 

I have a shunt

 

I have clubbed feet

 

 

Many of my surgeries I don't even remember because I was just to young. All done by Riley even though I was born at St Johns hospital in Anderson

Hey there Gavin, 

 

I like it when regulars on the forum share personal experiences about their backgrounds especially the struggles they faced growing up. It's cool to hear that you didn't let Spina Bifida slow you down or derail your life significantly. 

 

I know what it's like to go through several surgeries growing up myself. I just admire your resolve & your positive outlook Gavin. You're a good guy man & you deserve major props for finding your own place in the world. Bravo! 

 

At any rate, I'm glad to hear Indiana hospitals are so cutting edge in the 21st Century & that you're still going strong in 2016 Gavin. Nice. 

1 person likes this

Share this post


Link to post
Share on other sites

I sent the below picture to a good friend on this site who asked me to post it in this thread because as she said . . . it tells a positive story.  A story of hope.   I declined because I've already dominated this thread enough and didn't want it to be all about me.

 

Without even reading many of the threads upstairs, I know that there is probably a lot of sadness resulting from the Colt's lackluster season.  That often leads to tension between members.  

 

So, I've changed my mind and am posting my picture if for no other reason than to remind everyone to breathe and remember that there are things in life far more important than football.

 

The reason I fell in love with this picture was because my granddaughter is in the lead.  It's as if she is saying . . . "life has thrown a lot my way, but nothing is going to stop me.  So, the rest of you need to try to keep up".  

 

Image may contain: one or more people, tree, grass, shoes, plant, outdoor and nature

2 people like this

Share this post


Link to post
Share on other sites
On 11/30/2016 at 4:37 AM, Gavin said:

I've had 17 surgeries all done at Riley. I have Spina Bifida. To tell you the truth I actually did not know much about Spina Bifida. I just knew that's what I had and moved on and made a life for myself. I did not know that there was multiple levels of Spina Bifida. I did not know that some can not feel anything from the waist down who have it. I'm fortunate in that respect as I have full feeling in all my extremities

 

I had to have a feeding tube as a little kid

 

I had my tendons in my legs stretched out

 

I have a shunt

 

I have clubbed feet

 

 

Many of my surgeries I don't even remember because I was just to young. All done by Riley even though I was born at St Johns hospital in Anderson

 

I'm responding to the sad news of Gavin's passing by quoting him in this thread:

 

Gavin, you endured more in your young life than many of us can ever imagine.  Yet, you never whined, moaned, or complained.

 

You were an intelligent, active member who was well respected by many and I will miss you.

 

My heartfelt sympathy to your family and all who knew and loved you.

8 people like this

Share this post


Link to post
Share on other sites
On 1/31/2017 at 6:14 PM, shecolt said:

Yet, you never whined, moaned, or complained.

 

This is so true. He was the epitome of a good sport.

6 people like this

Share this post


Link to post
Share on other sites
18 minutes ago, Superman said:

 

This is so true. He was the epitome of a good sport.

 

Please write (or copy) this in the other thread so that his mother and loved ones will read it. Thanks.

3 people like this

Share this post


Link to post
Share on other sites
On 11/29/2016 at 10:35 PM, NFLfan said:

Thoughts and prayers for my best friend and her family. Her 3-year-old granddaughter was diagnosed with this kidney ailment called minimal change disease. She has swelling  around her eyes and in her legs and abdomen, as her kidneys are not functioning properly. She is currently hospitalized, getting steroid treatment. She has to be on a diet that limits her fluid intake to no more than one liter daily. (I can go through that in 2 hours.)   It will be difficult for her to adjust, as she is a child but thankfully she has a strong family and a large support network. 

 

Just an update on my friend's granddaughter. I am pleased to report that she is doing well and it does not appear that she will need a kidney transplant. She continues to be monitored closely for her ailment but she is doing better than expected. She no longer has the swelling around her eyes and her abdomen is not as large as it had been 2-3 months ago. She is allowed to have more fluids now but she must still maintain a low-salt diet. 

 

Yesterday, she celebrated her 4th birthday. My friend threw her a large party with over 150 guests. The only thing that went wrong is that I could not be there to celebrate with them. :) 

4 people like this

Share this post


Link to post
Share on other sites
21 hours ago, NFLfan said:

 

Just an update on my friend's granddaughter. I am pleased to report that she is doing well and it does not appear that she will need a kidney transplant. She continues to be monitored closely for her ailment but she is doing better than expected. She no longer has the swelling around her eyes and her abdomen is not as large as it had been 2-3 months ago. She is allowed to have more fluids now but she must still maintain a low-salt diet. 

 

Yesterday, she celebrated her 4th birthday. My friend threw her a large party with over 150 guests. The only thing that went wrong is that I could not be there to celebrate with them. :) 

 

I often wonder how others who have posted in this thread are doing.  So, I really appreciate your update.

 

I'm so happy to hear that all is going well for this little girl.  It sure sounds like she had one amazing birthday party!

1 person likes this

Share this post


Link to post
Share on other sites

Yesterday was the one-year anniversary of my granddaughter's transplant and I am thankful that I am able to say that she continues to do well.  She is a very active and happy little girl who no longer even cries during her weekly blood draws.  Instead, she just offers up her little arm as if to say . . . "I know it won't do me any good to cry.  So, let's just get this over so we can move on to me being rewarded with a lollipop".

 

To celebrate the anniversary, my daughter wanted to provide a meal at the Ronald McDonald House at Riley.  When she first told me of her plans and asked for my assistance, my reply was . . . "can't we just give a donation instead?".  The thought of preparing all that food and transporting it from Fort Wayne to Indy seemed daunting to me.

 

While we were there, I spent much of my time visiting with the families who had come to dine and asking if they would like to share the story of their loved one who was a patient at Riley.  There wasn't a single person who turned down my invitation.  

 

To the contrary, most seemed eager to have a listening ear.  Consequently, I heard stories ranging from the premature baby who was struggling to live to the 14-year old battling cancer.  In return, I was able to give them a story of hope by introducing my granddaughter and sharing her story.

 

Fortunately, my daughter didn't listen to me when I asked about giving a donation instead because my day reminded me of what this thread is all about . . . giving support to others.
 

So, I want to express my gratitude to all of you who have given your support to me and others in this thread with your kind comments and, yes, even your "likes".  While those "likes may not seem like much to those giving them, they are to the person receiving them because it means that you cared enough to read what was posted.  Those "likes" take the form of a virtual hug.  :hug:

 

 

 

4 people like this

Share this post


Link to post
Share on other sites

So glad that your granddaughter is doing well. I've heard great things about Riley, and the work they do.

 

I have a question, though: How much longer will she have to do weekly blood draws? Is this permanent, or depending on how her health continues?

1 person likes this

Share this post


Link to post
Share on other sites
2 minutes ago, teganslaw said:

So glad that your granddaughter is doing well. I've heard great things about Riley, and the work they do.

 

I have a question, though: How much longer will she have to do weekly blood draws? Is this permanent, or depending on how her health continues?

 

How is everything going with your situation? I thought to reach out to others here who have posted but I did not want to pry. How are you and your husband doing?

1 person likes this

Share this post


Link to post
Share on other sites
On ‎3‎/‎10‎/‎2017 at 3:30 PM, NFLfan said:

 

How is everything going with your situation? I thought to reach out to others here who have posted but I did not want to pry. How are you and your husband doing?

 

Everything is going very well for us. My husband started receiving his social security last December. I still work part time at the hospital,, and I like working less hours now. Since I work mostly in the evening, I have all day to do things and schedule appointments. We recently got a 2013 Ford Fiesta, after four years with no car. It's nice having transportation again, as the buses were OK, but runs only until 8:15 p.m. and doesn't run Sundays or holidays.

 

Thanks for asking.

2 people like this

Share this post


Link to post
Share on other sites
On 3/10/2017 at 3:26 PM, teganslaw said:

So glad that your granddaughter is doing well. I've heard great things about Riley, and the work they do.

 

I have a question, though: How much longer will she have to do weekly blood draws? Is this permanent, or depending on how her health continues?

 

When she is able to have blood draws that consistently show no problems, the time span between them will be lengthened.  But for now, something always seems to pop up every few weeks.

 

This week it was a Prograf (anti-rejection med) level that was too high.  If it's too low, it wouldn't be doing it's job.  If it's too high, it can cause kidney damage.

 

Riley is great.  I follow them on Facebook.  The story they recently featured was one of a ten-year old boy who was told he would never walk again after being paralyzed due to a drive-by shooting.  He is now able to take a few steps and is determined that he will one day play football.  

1 person likes this

Share this post


Link to post
Share on other sites
19 hours ago, teganslaw said:

 

Everything is going very well for us. My husband started receiving his social security last December. I still work part time at the hospital,, and I like working less hours now. Since I work mostly in the evening, I have all day to do things and schedule appointments. We recently got a 2013 Ford Fiesta, after four years with no car. It's nice having transportation again, as the buses were OK, but runs only until 8:15 p.m. and doesn't run Sundays or holidays.

 

Thanks for asking.

 

It is good to hear that things have improved. Thank you for letting us know. 

1 person likes this

Share this post


Link to post
Share on other sites

Since this is a true life story about my daughter, that I wrote for English class in Ivy Tech a few years ago.  Thought I would share.

 

On April 15, 2008, a beautiful baby girl was born at eight pounds and eight ounces.  Her name is Cami, she had blue eyes and blonde hair.  On her first night, she was crying and kicking, so we called on the nurse to find out what was wrong.  The nurse wheeled her back into the nursery to have the doctor check up on her.  The nurse said that we will get her back that night, but after hours of waiting, we finally decided to call the nurse to get updates.  We found out that she was having seizures, and her right hip was dislocated.

            The next morning, the nurse showed us the way to see our daughter, she was in the NICU (Neonatal Intensive Care Unit).  We had to wash our hands before entering the NICU.  We saw our daughter was in an enclosed clear box, hooked up to monitors and a camera.  They briefed us on the situation that was going on with our daughter.  They found an infection in her intestines, her right hip was dislocated, and she was on medication for the epilepsy.  I was distraught to see her in a situation like this, but I tried to stay strong for her.  They let us hold her, feed her, and talk to her.  She had a feeding tube that went through her nose, since she was not able to use the bottle for feeding.  The doctor recommended putting in a gastronomy tube, so she would be able to feed and receive her medications when discharged from the hospital.

            A month and a half later, she was finally discharged from the hospital.  She had prescriptions for six different medications that controlled her epilepsy, and another for her liver due to the amount of medication she was receiving.  At first, it was hard to feed her with the gastronomy tube and change her diapers with the cast for her dislocated hip.  It took many trips to the doctor’s office for routine check-ups with the neurologist for her epilepsy, the orthopedist for her dislocated hip, and the metabolic doctor for her mitochondrial disorder.  It was not until she was about one and half years old that we found out that she had a very rare disorder, Alternating Hemiplegia of Childhood. 

            We had a conference with the doctors shortly after her discharge from the hospital.  We discussed her different complications, and we found out that she had a partial deletion in one of the chromosomes.  An appointment was set up to have some blood work done from each of us to figure out who passed on the trait.  After a few weeks of waiting on the results, the genetics doctors found out that I had the same partial deletion in my DNA.  They ruled out the cause of alternating hemiplegia from the genetic trait, since they realized that I do not have medical complications. The search for the cause is still ongoing, and I have not given up researching on the disorder.

            One of our visits at the hospital resulted with her being put on life support.  She had an episode that required “Code Blue”, which means a life threatening situation.  It was a scary moment, all the doctors and nurses on the floor were surrounding her trying to figure out how to stop her severe episode which was originally thought to be a full blown seizure.  She stopped breathing, so the nurse had to use a breather to help her keep breathing.  They removed the patient that shared the room with her.  They did an X-ray, and then sent her to the Intensive Care Unit where she had to be put on life support.  A central venous catheter was put in, and we waited a few days before she recovered from her episode.  It was a long week for us, but we are glad she has recovered and is still with us.

            Alternating hemiplegia is a disorder that is fairly new, and there is still no treatment or cure at this time.  The disorder looks similar to a stroke.  It affects one side of the body in a paralyzing way, and it alternates every so often that during an episode.  For my daughter, sometimes the episode was so severe it paralyzed both sides of her body.  She could not move any of her limbs except for her head, and she would stare into space.  The episodes could last for fifteen minutes to days.  It has been classified in the migraine category, but the Federal Drug Administration has recently approved a medication for treatment for this particular disorder in June of 2013 called Flunarizine.  Her doctor has not yet prescribed her the medication. 

            She went through physical therapy, occupational therapy, and speech therapy.  The therapists that worked with her did a wonderful job getting her to where she is now.  She has learned a great deal of how to cope with her disability.  Therapy sessions were two times a week for the first five years before she started school.  She can walk, run, jump and play with other children.  But when the episode hits, it severely limits her motion.  She does not let it limit herself from what she wants to do.  She can write with either hand and she can still walk with one side being paralyzed without help.  Her physical therapist has noted that she has an uncanny ability to catch herself when she is off balance.  Every time one side is affected, she always tells one of us that “it’s not working.” 

            She has gone through multiple tests, CATs, MRIs, EEGs, and lumbar spinal taps.  All results have come back negative.  They could not find anything that would be a reason why she is having these episodes.  Later on the doctors believed that she was not having seizures since her EEG tests has always come back negative.  The alternating hemiplegia made it appear that she had seizures.

Cami is currently down to one medication, Trileptal, which controls her epilepsy, and she is completely healed from her dislocated hip.  Since her disorder is still progressive, she will get a special car seat, and a stroller big enough for her.  Even with the disability, she still puts a smile on my face every time I pick her up on my weekends that I spend with her.  She has taught me, no matter the disability, anything is possible; you just have to learn to adapt, improvise, and overcome.  She has renewed my motivation to finish my degree, so I can better provide for her as I watch her grow.  No matter if she has the disability, I still see her as a miracle, a perfect little girl with tremendous strength.

4 people like this

Share this post


Link to post
Share on other sites

@Virtuoso80

 

I'm hoping that you received an ""A" on your paper as it was very well written.  

 

One of the good things about you sharing your story is that you help bring awareness to a disorder that I had never heard of before.

 

That put me on a quest to learn more.  I started by looking to see if there were any Facebook support groups as I often find that they are written in words that I understand better than the medical sites that use big words that often go over my head.

 

I did find such a support group, but it wasn't very active.  I then went on to a medical site for some reading where I found that this disorder affects one in a million.  So, it's no small wonder that the support group isn't very active given the extreme rarity of AHC.

 

Cami sounds like a very special and brave little girl with a wonderful, loving father.  My prayers will be you that a cure is soon found.  

 

3 people like this

Share this post


Link to post
Share on other sites
On ‎2‎/‎26‎/‎2016 at 0:38 PM, crazycolt1 said:

Is there a medical reason your husband has been unemployed for several years?  I was just wondering. I worked from the time I was 16 years old till I became disabled 3 year ago. That was 43 years and the longest I ever went unemployed was 2 weeks and that was back in 1979. Maybe it's time for him to find a job if he don't have a medical problem preventing him from doing so?

Maybe it's time you to put your posts in a can and bury them. If you knew anything you would know in some cases people just give up trying after prolonged periods of not being hired. Not everyone laid off finds employment after losing their job. 

Share this post


Link to post
Share on other sites

Guys, please don't take shots at each other, especially not in a thread that is supposed to be a support thread.

 

@crazycolt1 congratulations on your good fortune. But, if you've never had difficulty finding work, it does not necessarily mean you are somehow taking work more seriously than other people.  I've been through unemployment as have many people I know.  Trust me, looking for work is one of the hardest jobs in the world.  You have to keep your chin up and your confidence high at all times in the face of non stop rejection.

 

I have a good friend who was laid off at xmas, and has had many interviews but, the best they've come up is second runner up.  This last one, had 170 applicants.

 

So, lots of people out there looking for work.  She's taking in free lance work while looking but, as you may or may not know, paying the 'self employment' tax makes this not very profitable/livable.

 

When I see people who have had the very good fortune to never have been laid off, I always think that they have no idea how extremely fortunate they are.

1 person likes this

Share this post


Link to post
Share on other sites

My grandma is suffering from dementia, and it's getting pretty bad.  It's like death by a million little heartbreaks.

 

Everyone in the family has had a moment where she asks something that we just aren't prepared for.  She asked my Mom one day "Have you met Janice?", and my mom didn't know how to say "Mom, I am Janice."  

 

I was over there helping with various chores around the yard and house last week, and at one point she recognized me and asked "Have you ever met Ashley?"  Ashley is my sister.  All I could manage to say was "yeah"...  She gets confused about where she is, but even worse is when she gets confused about WHEN she is.  Lately she has been talking to people that have been dead for years, and acting as if she were back in her childhood home.  The hardest part is that my 101-yr old grandfather is still trying to take care of her, and he has to experience this every day.

 

:Cry:

2 people like this

Share this post


Link to post
Share on other sites

@Lucky Colts Fan  I'm so sorry to read about your grandmother.

 

My mother-in-law had Alzheimers and I know how difficult that can be for everyone.  For me, it was if the woman I knew and loved had already passed; but her body was still with us.  We felt bad if we didn't visit and bad if we did because she never knew who we were.  

 

I can't imagine how your grandfather is still able to care for her, but I hope that he will be willing to realize and accept if/when the day comes that he is no longer able to safely do so.  

1 person likes this

Share this post


Link to post
Share on other sites

What always puzzles me is when someone is saved from a building on fire and their family says "It was God's will". The person standing next to them had a family member die in the same fire. Is that also God's will? This actually happened recently in Houston when family members of a fire incident were being interviewed after the fire.

Share this post


Link to post
Share on other sites

I figured I would contribute to this thread a little.  I have a pretty long "life happens" story and it will be hard to sort it out and find the best starting point, but I will try.  Some of the beginning is just that... "life happens", but I am including the information because it still very much affects my life.

 

Depression was something I thought I would never have to deal with because I thought I would be able to mentally overcome it just as a lot of us do in our sports.  Mental toughness.  Doesn't work after you pull your boot straps up over and over.

 

So back in my college days I was training with a friend of mine to wrestle in the regional olympic trials qualifier.  We didn't have a chance to make it but wanted to see how we stacked up against the best.  I was cutting weight which I had done in HS without any trouble.  As you may know while doing this, at least back then, one effective way is to basically dehydrate yourself while you are keeping a minimum diet.  So I wake up one night with excruciating pain in my lung- couldn't take a full breath.  I went to class because missing one cost 5% of your grade which I couldn't afford to do.  I then went to the university hospital and they ran test after test.  Ended up transferring me to a local catholic hospital where I spent a week being treated for pneumonia.  While lying in bed I developed a lot of pain in my right leg.  Long story short on this part it was blood Colts not pneumonia.  Come to find out I have a rare clotting disorder.  Treatment is preventative by anticoagulation so essentially that ended my athletic career. 

 

I have had related issues such as a saddle clot in my pulmonary artery twice in six months about ten years ago.  They finally put a filter in my Vena Cava to prevent Colts from traveling to my heart and lungs from my legs.  During that same time it was discovered that I also had heart disease and I had three stents implanted.

 

As a side note, between these two periods of time I lost my dad to a heart attack.  He was 46 and I was 24.  So even to this day I often wish I had my father to discuss things with and get his opinions.  

 

Moving forward to 2016.  I get a phone call two days before Thanksgiving (2015) from my mother to tell me that my 20 year old nephew decided to take his own life.  My brother found him hanging in a tree in their front yard.  He was an exceptional athlete and a great kid all around.  We will never know why.  

 

Come January I started having some familiar pains in my chest and get a little out of breath over not too much work.  In fact, walking a short distance uphill would do it.  I scheduled an appointment with my cardiologist and they immediately took me in for a heart cath.  I remember hearing tools get tossed onto the tray like they were closing up shop and the doc says "this will be much easier to fix with open heart".  I was like, what?  This was a week before my 48th birthday.  So the following Friday I went under the knife.  A year and a half later I feel pretty good, but let me say that surgery changes you.  It changes how you think and even though I feel better I struggle sleeping.  Mostly because of all the thoughts running through my head now.  It is hard to explain.

 

When I was in the cardiac IC unit my best friend came to visit me.  Oh, I had this done in Indy not Ohio.  With my clotting disorder even a simple arthroscopic surgery can be challenging so my hematologist has to be involved and she is in Indy.  Anyway, my friend had cancer and we all knew he was terminal but what I didn't know was that two short months later he would be gone.  Here walking one day and gone the next.  

 

So by the end of the spring I am going through re-hab and by this point I am really struggling with depression.  Things just kept happening one after another.  I was taking some classes I needed for work and get a call from another friend back home saying that my cousin's daughter was killed in a car accident.  She had a 5 year old son who wasn't with her at the time thank God.  He is being raised by his grandmother now (my first cousin).  

 

There is more I could add, but these are the worst of it.  I take Wellbutrin 2x daily but I really don't know how much it helps because I started taking it soon after my surgery.  I get confused a lot.  It seems like I don't know which direction to go and I have a hard time making decisions.  I battle with myself a lot too.  I am home alone all day as I work from home most of the time so that may add to it.

 

What I do know is that depression is real.  And that you can't beat it with mental toughness.  This forum gives me some relief because I can interact with people and read their thoughts, plus I have made some friends here too and that's nice.

 

I apologize for the super long post.  I know that can be annoying.  I tried to simplify the story best I could and I  debated even telling it.

3 people like this

Share this post


Link to post
Share on other sites
1 hour ago, BR-549 said:

What I do know is that depression is real.  And that you can't beat it with mental toughness.  This forum gives me some relief because I can interact with people and read their thoughts, plus I have made some friends here too and that's nice.

 

Sorry about your nephew, I lost my 2nd cousin in similar fashion last year.

 

Hold on to things like this forum.  This thread especially, is a great place for people to vent things that are weighing them down, and can give you perspective when you see others dealing with their own issues.  I think every individual deals with depression more than they care to admit.  We have to mentally wrestle ourselves every day.  There's no cure-all, but going outside and feeling the sun and wind on your face always helps.  Pets are great, and give you daily responsibility and affection.


Just try to remember the things you have to look forward to.  This year could always be the year for the Colts, every year, and it is something to stay present and positive about.  :lombardi:  :thmup:

 

:clover:

3 people like this

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now

  • Recently Browsing   0 members

    No registered users viewing this page.

Community Software by Invision Power Services, Inc.