Why a Neurosurgeon and Why Maryland

This past weekend, my dear hubby and I traveled to Washington DC to meet with a neurosurgeon who specializes in treating people with Ehlers Danlos Syndrome. We ran into a few snags, but overall had a good trip.  

People have asked why a person with joint issues would need to see a neurosurgeon. Well, Ehlers Danlos doesn't just affect the joints, it affects all parts of the body that have collagen. It can cause all parts of the body to not work the way they should. This can cause issues like Chiari Malformation, cervical cranial instability, atlantoaxial instability, compression on the brain stem and/or spinal cord, syringeomyelia, blocked cerebral spinal fluid and other spine and brain issues. 

Many doctors don't fully understand that Ehlers Danlos can cause so many problems, so finding a specialist is important. The majority of EDS specialists are in Maryland. That means, if I want to get help, I have to travel. (By the way, flying is really hard on me.)

Dear hubby and I traveled to St. Louis in March so that I could have an upright MRI of my brain and cerebral spine taken. These special images were needed because the insides of people with EDS can stretch and hang in abnormal ways when standing or sitting, whereas swhen we are lying down we may appear "normal". 

According to the neurosurgeon, my images looked okay. That's good, but not the end of the story. It doesn't look like I have a Chiari Malformation, but we may need to check the cervical cranial areas again. When I took the test in March, I remember feeling like I couldn't move my head all the way down because the "helmet" got in the way. (The "helmet" is a device used in upright MRI machines to help hold your head in place. It was difficult to flex and extend my neck with it there.) I do have symptoms of this issue, so we'll be talking to the neurosurgeon about that over the phone to see if he would like me to have another upright MRI.

I do have the classical symptoms of atlantoaxial instability or AAI. It's a long phrase that basically means the top two vertebrae in my neck (the atlas and the axis) move more than they should when I rotate my head to look side to side. (There is a special CT Scan that can be done to confirm this, but it's proving difficult to find anyone who knows what the test is or how to do it.) It may not seem like a big deal to be able to over rotate your head, but it can actually cause a lot of health issues. Numbness and tingling in the legs, feet, arms, and hand; blurred vision; black spots; passing out; slurred speech; and more. In severe cases it can cause permanent paralysis. 

We don't have it confirmed that I have either of these conditions; but if they do confirm it, my hubby and I will have to decide whether or not the treatment is right for me and our family. In meantime the doc wants me to wear a hard cervical collar as much as I can tolerate it to keep my neck from rotating too much and causing problems.

This is us doing a little sight seeing after my doctor's appointment. 

So that's why my dear hubby and I traveled all the way to Maryland to see a specialist about my neck, back, headaches, and more. We're back home and enjoying being with our kiddos again. 

A special thanks goes to all those who made this trip possible. Thank you to Miracle Flights, our home church, friends, and family. Your support and help is more appreciated than you know.

Dads who are care givers

So, when you read the title of today's blog you probably thought, all dads are care givers, I don't get it. Well, all dads can be care givers. They can bandage boo-boos, read stories, and sing lullabies; but today I'm referring to dads who have children with special needs. The term care giver takes on a different and exceptional meaning to these dads and their families.

Today is Fathers' Day (it's 12:08AM), and I've been thinking about how I want to honor my husband today. I want to make sure I paint a picture that can help others understand and appreciate everything he does, and what so many other dads like him do each day. 

We have a unique family. Not only do all four of our children have unique challenges, but I am physically disabled too. So there is this tremendous pressure put on my dear husband to not only be the sole bread winner for our family, but to be the rock, the strength, the provider of positive thinking, and the burden to stay healthy. It is on his shoulders to remember things and keep it all together, because it's difficult to do that when you have a chronic illness or special needs. He's the one that when we have another doctor's appointment for one of our children, must time right back into work and continue with his day like nothing happened at all, no matter the news we just heard. I can leave and begin to cry or yell as soon we begin driving home, but he has to step right back into talking with people and helping them with there presentations and pretend like everything is fine, even when it isn't. I can't stand it when people tell him how strong he is for not showing emotion during these difficult times, and not letting it get to him. As a care giver, as a parent, it does get to him, and he should be allowed the time to cry, and yell, and mourn. But, there is just so much pressure put on these dads, that they often don't get the chance to let it all out.

Throughout our years together, my husband has shown time and time again what it means to be an excellent dad and caregiver to our children and to me. When our BG was little and just beginning  occupational therapy, it was her kind hearted daddy who could see her struggle with the information her body was sensing and would hold her tightly in his arms until her brain could calm down again. He would explain to family, calmly, that she couldn't always wear the clothes picked out the night before, and may even need to try on many different outfits before finding one that felt right so we could leave for church. He would remind others not to demand hugs or touch her without warning, because she was so very sensitive to even the slightest touch. 

 When our oldest needed brain surgery, he took the time to help find people to watch our other kiddos and helped make sure that SuperBoy always had one of us with him in the hospital. He also made sure that I was able to eat at the hospital and at home, even with my special diet. This dear daddy went with the physical therapist and SuperBoy to make sure he could make it up and down the stairs before we brought him home, and made him a bed in the living room until it was safe for Him to sleep in his loft bed again.

This daddy has met me in the emergency department time and again to check on our PG because of an asthma flare-up, continued falling, and other unusual health concerns. He's rushed her there himself because she couldn't stop moving and she was desperate and tired and crying. He's had to pick her up from a fall or carry her up stairs to bed countless times. He makes arrangements and takes precautions so that she can do activities and go on field trips and excursions and doesn't have to stay behind. He makes sure she gets to be a kid and not just a bunch of illnesses piled into one little body.

He reminds our youngest that no matter what, his daddy loves him. Even when he draws on the wall, throws a tantrum, or wets his pants; his daddy loves him. Even when Daddy can't go to the ultrasound or the visit with the kidney doctor, his daddy loves him and wishes he could be there. 

My husband, the care giver, is willing to give up time when he would rather be watching the Royals play or listening to Hamilton to help me get the kids ready for bed because PG has been falling a lot and needs someone with her all the time; or because my knee just dislocated and I can't walk. He gives up time with the guys, and instead takes the time with our oldest guy so they can build a strong relationship of trust and respect. So he can help our teen to grow into a self-sufficient, responsible young man who can make his dreams a reality. He takes the time to make sure each of our children knows how wonderful they are by spending one-on-one time with them and getting to know each of their likes and dislikes. He takes the time to show them that no matter what their struggles are, they can still dream and reach for the stars even from a wheelchair.

This doesn't even address all the time and energy he puts into taking care of a wife whose body is so unpredictable it can go from happy and enjoying life one moment to severe pain and fatigue, or even stoke-like from a rise in body temperature the next. There are all the times when he has to carry me up or down the stairs, wrestle with my wheelchair, help me put braces on, rub my spasming muscles, or simply hold me while I cry. 

All of these things he does after working a full time job, not knowing if he'll need to come home and have to fix dinner because his disabled wife didn't have the energy to do it, or clean up a mess the kids made, or wash a load of laundry; when he would really just like to sit down and chill. It can be difficult and nearly impossible to find a way to relax with the loud yelps and jerks of Tourette, the inflexible nature of OCD causing someone to pace or have an anxiety attack, the crying and meltdowns from overloaded senses, and the rambunctiousness of a preschooler who is almost always mischievous and gets himself hurt and bruised easily; and yet this dad sticks with it. He helps with potty training and showers, making meals and grocery shopping, planning medical trips and one-on-one time with each of our children. He is an amazing dad who puts more love and compassion into one day than many people have to put into a month. He doesn't to it all with a smile, that would be too much to ask of anyone; but he does it because he loves our family and wants what is best for each of us. 

So, the next time you see a dad of a special and unique family similar to ours; instead of telling him how strong he is, tell him he's a good dad and that it's okay to take some time off for himself. It's okay to cry and mourn and become angry for his child/children/wife who can't do all the thing he wants for them. It's okay to be strong in the eyes of the world, but it's equally okay to need help and not do it all yourself. The strength these dads have goes far beyond what society sees, so tell them you appreciate them for the things they do that you know nothing about. Give them a hearty hand shake or even a hug. 

So, to my husband, I love you. I appreciate you. I couldn't walk this road without you, and I don't want to walk it without you. 

 To my husband, to my dad, and all the other dads out there today, thank you for loving your children. Happy Fathers' Day!

Starting again

So, I'm going to try to blog on a more regular basis. There are two main reasons why I think I should do this. 1. It's therapeutic. Life is hard, confusing, and frustrating right now. Blogging will hopefully allow me to get some of my frustration out, and hopefully it will help me look for the positive things in my day. 2. To bring awareness to a rare illness that desperately needs more research and more informed medical professionals. 

My goal for each blog is to share a bit of what is going on in our lives, share a Scripture or song that has touched my heart in some way or speaks to my feelings, and share a positive note from the day.

I hope you'll follow along on this journey. It's not where I ever expected to go with this blog, but hopefully it will benefit someone.

God bless and see you soon!

I'll leave you with this photo I took earlier today of three of my kiddos playing in the water. They had a blast! 😀

Courage

Today began full of EDS pain and gastroparesis nausea complicated by low blood sugar. It was NOT a good morning. My caring husband made me breakfast, and struggled with the desire to stay home to take care of me and the need to go to work. There were tears and stress and even a bag in case my breakfast wouldn't stay down. We decided he should go to work and hope that I would feel better soon. Well, I'm typing this at 10:18AM, and I'm feeling much better.

To go back a little, I got a pretty big surprise earlier this week. A dear friend told me that when they saw me on Sunday morning, they saw anger. I haven't been told that before, but he was right. I.AM.ANGRY! On Sunday I was angry that I was stuck in a wheelchair. I'm angry that I always have to use some sort of walking device to get around. Angry that I am not the mom I always dreamed of being. Angry that I'm not the wife I want to be or that my sweet husband deserves. Then I realized from where all this anger comes.  This anger I have, is deep seeded in fear. Fear that I am not the mother my children deserve. Fear that I am not the wife my husband deserves.  Fear that I am not doing enough, being enough, strong enough...

I have fear of the future and for what it holds. How much sicker will I become? How much more disabled? 

But the fear that causes the most anger, is the uncertainty of my children's future. Each of my children has a 50% of having EDS and one of them has already been diagnosed. I wouldn't trade any of my children or choose not to have them, but it breaks my heart to think they could end up chronically ill. As I was explaining to my children this morning that I wasn't contagious, it's my EDS acting up; my little girl looked at me and asked with fear making her voice tremble, "Is that going to happen to me too?" 

It is my job to teach her how to have courage and faith in the One who DOES see the big picture even though we don't. So I hugged her and held her and told her that I get scared too. 

You see during all the yuckiness this morning, I was on Facebook. On my page I found several reminders to have faith and hope, and above all to not be afraid! I was able to share some of these with her.

This is the video I showed her. http://m.wimp.com/fear-dance-routine-magic-costume-mahomet-seymour/ I don't know how much of this video she'll remember, but even if all she remembers is living in fear is darkness and living in faith with hope and courage brings light; I'll take it!

There is even more that was shared with me this morning, reminding me to not be afraid and thank God for the storm, because our storms (and how we handle them) may be blessing others. God has been sending me a message today, that I wanted to share with you. "Be not afraid!"

https://m.youtube.com/watch?v=edfwnITsqT0&feature=youtu.be

Good-bye 2015, Hello 2016

This past year has been one of the most difficult years I have ever had. It was an incredible roller coaster ride that, without my family, friends, and faith in God, I'm not sure that our family would have made it through. Here's my list of the best and worst for my family in 2015 and a few things I'm looking forward to in 2016.

The Worst of 2015

(I'm not sure that I can put these in a particular order. Some were worse than others, but I can't sort them all out right now.)

💥 Our daughter (PG) having large spells and tics that would last minutes to hours. She was eventually diagnosed with both Tourrette Syndrome and epilepsy. We're still waiting for her to be six months seizure free so she can be off restriction.

 💥 Our son (SuperBoy) needing multiple MRIs because (as we discovered) sedation doesn't work for him and the doctors needed more images than they originally realized. 

💥 SuperBoy was diagnosed with a Chiari malformation and needed more tests to confirm how significant it was.

💥 In June, it was determined that, due to the restriction of cerebral-spinal fluid and pressure on the brain stem, our son would need brain surgery to make more space for the brain and allow the fluid to flow the way it should. This was heart breaking news.

💥 PG was not able to play with her friends at the park, climb trees, go across the monkey bars, or do anything where she could fall. She would often cry because she couldn't be with her friends and do what they did at the park. (This broke my heart every time and caused some differences in opinions on parenting.)

💥 Many, many, many doctors' appointments, tests, and phone calls to specialists at Children's Mercy Hospital.

💥 Being diagnosed with Ehlers-Danlos Syndrome and learning all the complications that can go with it. Also learning that each of our four children has a 50% chance of having it too.

💥 Some friends whose daughter had been fighting cancer for nearly her entire 15 years, won her battle by God calling her home. 

💥 My kind, incredible, and extremely intelligent brother-in-law was fighting cancer. He was doing better when he took a sudden turn and was taken Home to be with His Savior and his dad who passed earlier in the year.

Some of these were heartbreaking and others exhausting both mentally and physically.  The good didn't outweigh the bad, but it's always good to count your blessings and remember the good with the bad.

The Best of 2015

(Again, these are in no particular order.)

💥 Finding the medications and dosages to help PG with her severe tics and seizures.

💥 SuperBoy going on a church trip and two camps before having his surgery.

💥Everyone who bought bracelets and helped sell bracelets to pay for SuperBoy's camps.

💥 SuperBoy's surgery was successful. He only had to stay in the PICU one night and less than a week in the hospital. 

💥 Amazing friends and family who were at the hospital during SuperBoy's surgery or helped by watching our other children so both DH and I could be at the hospital. Also those who brought us meals so we didn't have to worry about fixing supper when SuperBoy was at home recovering.

💥 Incredible doctors and staff at Children's Mercy Hospitals and Clinics.

💥 The Easter and Christmas programs that I directed for our church as well as the children's choir singing beautifully.

 

💥 Birthdays and holidays spent with loved ones. 

💥 My niece graduating from high school, joining the Army National Guard and graduating from basic training and AIT training with flying colors!

💥 Finally receiving a diagnosis after being chronically ill for 5+ years. 

💥KC Royals winning the World Series!

With a year like we had in 2015, 2016 must be better, right? Well I'm choosing to look for the positive and search out God's will and blessings for my family. No matter how 2016 turns out, I know for sure that God will walk with us each step of the way. Here are a few things I'm looking forward to in 2016.

💥 Fundraising to pay for medical bills, equipment, and hopefully a more accessible home.

💥 Getting appointments with geneticists and specialists to get more health issues figured out.

💥 Date nights with my DH. 

 

💥 Family staycation or trip.

💥 More birthdays and family celebrations.

💥 Watching our children learn and grown as we homeschool. 

This year I'm working on putting the past behind me and looking forward to the future, whatever it may hold. 

http://youtu.be/52nriweHAXs