World Spina Bifida Day

Today (October 25th) is world Spina Bifida day. I was going to do a typical awareness post, but nobody really is interested in the numbers behind the disability… so I am instead going to give you a glimpse into our life.

If you have followed the posts on this site, you know that my pregnancy was not easy. Several specialists tried their hardest to have me terminate the pregnancy. For me, termination of pregnancy was never an option that I would have considered. (I am not pushing my personal beliefs on anyone, I am simply stating that it’s not anything I would ever consider) At every appointment up until the point where termination was 100% illegal even with medical backing, they would try to convince me to consider it. They told me that my child would never walk, talk, eat, use the bathroom, etc… they said “he will be in a vegetative state for his entire life. If you can’t think of his quality of life, think of yours. How will your life be impacted by this?” Well, let me tell you how our life was impacted by it.

At 9 months of age my son sat up on his own for the first time ever.

At one, he tried foods… we were given a list 3 pages long of foods and items that he should not have. As long as we stick to that list eating is fine. He’s behind in eating on his own… it still (at 5) takes him forever to eat a meal and he can’t manage 2 utensils at once. But for a child who was never supposed to eat at all, I’m ok with him being a touch behind in this area.

At 2 he took his first steps, with the assistance of a walker, at 4 he got forearm crutches and at 4.5 he took his first independent steps. He still uses crutches, and we recently ordered a distance wheelchair for activities such as the zoo and Disneyland. He can, however, walk up to 30 feet unassisted currently. He will be going for surgery in the next couple of months to try to provide more stability to his ankles.

At 3 they tested his ability to copy simple shapes and utilize scissors… we had been working so hard on all of the rest of it that we had missed working on these things. I say we, and I mean his team and us, his family. He had PT weekly still at that point and nobody had worked on it yet. At 5 he hates scissors and can draw very well for his age.

I will pause here to give you some insight to the broken system that is PT/OT. By 3 my child had already had 3 PT’s and had been pushed off of our PT’s case load and put with a PT aide. They continue to try to do this to this day… it’s absolutely not ok and not fair to the child. As soon as my child excels they try to push him off to someone else. As soon as he needs additional care, the actual PT is too busy. I have lodged several complaints regarding this. I feel very strongly that a child will reach full true potential only when they are fully engaged and comfortable. If the PT is so busy that they can’t take time for a child who requires additional assistance, get another one to assist. We actually are going to be paying for a 2nd independent PT starting very soon, as we have been told that our PT is “too busy” for the care my child will require post surgery, and he will be placed, again, with an aide. It’s nice that we have a benefit company that allows this… many do not. As for OT, we have seen them ONCE and were told we do not require their assistance. Hmmmm. The system needs to change in order to be fully effective. 

When it comes to intelligence, my child is extremely smart. He is suspected genius, we may or may not have that confirmed in a year or two. 

This summer we bought a climber and that has helped so much, we also got a pool and that was AMAZING for him. My husband and I come up with several different methods for our son to do things, and he’s progressed far beyond even the most optimistic of opinions of what his future might hold. We look beyond his diagnosis and don’t accept “I can’t” we always ask him to try. 

He has achieved all of this despite doctors and specialists saying he could never do so. He has done it all even without proper assistance (in my opinion) from a PT/OT team. He has achieved more in 5 years than he was expected to in a lifetime. All of this has been done with an extremely optimistic outlook, both on our part, but more importantly on his. He looks at everything and tries to figure out a way that he can do it.

So, my awareness post isn’t about the numbers… it’s about the people behind the diagnosis who need to be seen as more than a number, and more than their disability.
See the ability not the disability



Take care of yourselves. ~C

Down Syndrome Awareness

Down syndrome is a condition that affects approximately 45,000 Canadians. 

There is no scientific evidence as to what causes Down Syndrome, but scientists do know that the risk increases as the mother’s age increases. A woman who is 30 has a 1:1000 chance of having a child with Down syndrome, while a woman who is 35 has a 1:400 chance of it. By the time a woman reaches 40 the chances increase to 1:100. 

Down Syndrome is also most commonly know As Trisomy 21, due to the fact that it is caused by an extra 21st chromosome. There are, however, 3 types of Down Syndrome. There is Trisomy 21 where all cells are affected by the additional 21st chromosome. This is the most common form of Down Syndrome.

The second form is called translocation Down syndrome. This occurs in 3-4% of cases. This is the only form of the condition that can be hereditary. If your child is found to have translocation, you should advise other family members so that they have the option of genetic testing. It is possible to have translocation Down syndrome and not know it. This is called balanced translocation. It has symptoms, but they are common with several conditions. The symptoms are fertility issues, miscarriages and an increased risk of having a child who has medical issues.

The third type is called Mosiacism. This is where there is a problem with the copying of cells when they reproduce. This causes some cells to have 46 chromosomes and some to have 47. Different parts of the body can have different levels of mosiacism. This does not have any bearing on the medical conditions that will be present but it can have bearing upon how defined the common characteristics will be. 

What are the common characteristics of somebody who has Down syndrome?

  • Abnormal outer ears
  • Flat face/head
  • Almond shaped eyes
  • Protruding tongue
  • Wide face
  • Short hands
  • Short neck
  • Low muscle tone

It is important to note there are more characteristics associated with this condition, and not all people who have this condition have any/all of the characteristics. It is also important to note that the presence of these does not necessarily indicate Down Syndrome.

It is very important to note that Down Syndrome can be passed on by either parent. Having a child who has Down syndrome does not mean the mother was the one who passed along the extra chromosome.

So… What is it? What happens with Down syndrome?

A baby who is born with Down Syndrome will often be sent for an ECG and an ECHO. These are tests on the baby’s heart. 40% of babies with Down syndrome also have congenital heart defects. While this is a scary number and a scary thought, know that these defects are almost always treatable. Sometimes they require no medical assistance at all and heal on their own, or do not pose any threat to be left alone. Other times they require medication or surgery. Your medical team will help guide your decisions to the best of their ability.

As your baby gets older, they will probably require ear and eye tests fairly regularly (every 6-12 months) as approximately 50% of children who are born with Down syndrome also have vision problems and/or frequent ear infections that cause some degree of hearing loss.

Hypothyroidism is also very common in people who have Down syndrome. This will need to be checked regularely. Hypothyroidism is where your body does not process carbs & fats as efficiently as it should. This can lead to feeling tired &/or “sluggish”, weight gain and several other issues. This is normally controlled via oral medication.

Low muscle tone is very common in children with Down syndrome. Due to this they will often achieve milestones later than their peers, but it’s important to realize that the majority of the time they DO reach them eventually. Please do not compare your child who has Down syndrome to their peers. It’s not a fair comparison, and will lead to very negative feelings/emotions by both yourself and your child. With a child who has Down syndrome, attitude isn’t just important, it is everything. Your attitude can make or break your child’s success. Encouragement and inclusion are your child’s best chance for success. 

Inclusion is so important for children with Down syndrome. While they may learn slower than their peers, they learn the same way as their peers, therefore it is extremely important that they be included in activities with their peers.

Occupational therapy, physical therapy and speech therapy and assessments will become a very important part of your lives. Your child will likely benefit from at least one form of therapy. These therapies will likely be a part of your life for a very long time, possibly forever.

As your child ages, your doctor will likely recommend routine x-rays on their neck/skull to assess any instability, which can occur more commonly with people who have Down syndrome than it does with people who don’t have it. These x-rays will likely be done between 3-4 years old, again at 10-12 years old, again at 18 and finally at 30.

Dementia  is fairly common is people who have Down syndrome which makes annual check ups even more important. The early signs of it can begin to appear as early as 30-40 years old.

People who have Down syndrome can and do lead very active and normal lives. For some, this means living and working 100% independently whereas for other it means holding a job but living at home with family or in an assisted living home. 

Screening tests are available during pregnancy, but they all have their risks. If you do choose to do a screening test, please remember that while the tests can determine the presence of an additional chromosome, there is no test that can determine what that will mean for you or your child. No test will tell you how smart or delayed your child will be. No test can tell you how many or how few medical conditions will be associated with the condition if it is detected. No test can tell you what your child’s personality and level of determination will be. 

If you have gotten a prenatal diagnosis of Down syndrome and need someone to talk to please don’t hesitate to reach out, we have a few members of the group who would be happy to help you navigate your way through any questions you may have… Speaking not as a medical professional, but as a parent who has been through it before.

World Down syndrome day is March 21st, according to Canadian Down syndrome society, and Canadian awareness week is November 1-7th inclusive.

Take care of yourselves. ~C

Arthritis 

Another awareness post for a member of our group.

Arthritis is something that we have all heard of and a lot of us have experienced it, but it is unique in that it is experienced differently in all people who have it.

Arthritis affects 1 in 5 adults and 1 in 250 children. Those are staggering numbers. 2/3 of people diagnosed with arthritis are under 65  and over half of the population over 65 has it.

Arthritis can strike anyone at any age, in any severity. There are many different forms of arthritis. According to arthritis.org there are over 60 types of arthritis. They are as follows: (taken from arthritis.org)
A-C

Adult-onset Still’s disease

Ankylosing Spondylitis

Back Pain

Behçet’s Disease

Bursitis

Calcium Pyrophosphate Deposition Disease (CPPD)

Carpal Tunnel Syndrome

Chondromalacia Patella

Chronic Fatigue Syndrome

Complex Regional Pain Syndrome

Cryopyrin-Associated Periodic Syndromes (CAPS)

D-K

Degenerative Disc Disease

Developmental-Dysplasia of Hip

Ehlers-Danlos 

Familial Mediterranean Fever

Fibromyalgia

Fifth Disease

Giant Cell Arteritis

Gout

Hemochromatosis

Infectious Arthritis

Inflammatory Arthritis

Inflammatory Bowel Disease

Juvenile Arthritis

Juvenile Dermatomyositis (JD)

Juvenile Idiopathic Arthritis (JIA)

Juvenile Scleroderma

Kawasaki Disease

L-Q

Lupus

Lupus in Children & Teens

Lyme Disease

Mixed Connective Tissue Disease

Myositis (inc. Polymyositis, Dermatomyositis)

Osteoarthritis

Osteoporosis

Pagets

Palindromic Rheumatism

Patellofemoral Pain Syndrome

Pediatric Rheumatic Diseases

Pediatric SLE

Polymyalgia Rheumatica

Pseudogout

Psoriatic Arthritis

R-S

Raynaud’s Phenomenon

Reactive Arthritis

Reflex Sympathetic Dystrophy

Reiter’s Sydrome

Rheumatic Fever

Rheumatism

Rheumatoid Arthritis

Scleroderma

Sjögren’s Disease

Spinal Stenosis

Spondyloarthritis

Systemic Juvenile Idiopathic Arthritis

Systemic Lupus Erythematosus

Systemic Lupus Erythematosus in Children & Teens

Systemic Sclerosis

T-Z

Temporal Arteritis

Tendinitis

Vasculitis

Wegener’s Granulomatosis

While I can not post about them all, I will tell you the commonalities of the main types.

Arthritis is pain and inflammation in your bones and joints. Most commonly, this pain is attributed to injury, but there are many different things that may cause arthritis and flare ups. It is the number one cause of missed work, loss of wages, and the number one diagnosed disability. (Source: http://www.arthritis.org)


Symptoms:

Symptoms of arthritis are

  • Pain
  • Inflammation
  • Redness
  • Stiffness
  • Loss of motion
  • Loss of range of motion

If you experience any of these please don’t hesitate to seek a medical diagnosis. While arthritis is not curable, it is manageable through medication (either oral or injection), alternative practices (yoga, accupuncture, etc) and exercise. In extreme cases, surgery may be required.

If you know someone who suffers from arthritis please be understanding when this condition limits what they are able to do. Most people want to do so much more than their bodies will allow. The nicest thing you can do is offer support and understanding.

Take care of yourselves ~C

Trigeminal Neuralgia Awareness

This is a post for a parent within the group. 

Her son has several diagnoses, one of which is Trigeminal Neuralgia, also known as TN1 or TN2.

For this education post I am not going to get into medical terms that people outside of the world of disabilities or medicine don’t really understand… I’m giving you the facts, as simply as I can.

Trigeminal Neuralgia is a pain disease. It causes pain in the face that lasts seconds up to 2 minutes per episode. Episodes can happen back to back for up to 2 hours. 
TN1 is where the episodes only cause pain on one side of the face, and it comes and goes. It is the most common form of Trigeminal Neuralgia. TN2 is the less common form, and it is characterized by constant, less severe pain. It is possible to have both TN1 and TN2 at the same time, where one part of the face has severe, debilitating pain and the other part just hurts. I’m not trying to downplay it at all, TN1 can be mentally and physically incapacitating pain. Rarely, both sides can be affected, which is called bilateral TN. Even more rarely, both sides can be affected at the same time.

With TN, there are 3 nerves in the face that can be affected. The upper nerve sends sensation to the scalp, forehead and front of the head. The middle nerve sends sensation to the cheeks, upper lip, teeth, gums, upper jaw and the nose. The lower nerve sends sensation to the lower lip, lower jaw, teeth and gums. TN1 can affect 1,2, or all 3 nerves.

So, what causes TN?
Great question. There are so many things that TN is associated with. Some of them include MS, a Tumor, a tangle of arteries and veins, an injury to the Trigeminal Nerve, or pressure on the Trigeminal Nerve by a blood vessel where it exits the brain stem. The compression created by the blood vessel wears on the protective coating on the Trigeminal Nerve and causes eventual damage to it.

This disorder is not fatal, but it can be debilitating and often is progressive in nature. A person who has one episode per month can suddenly go to having one every week, then one a day then one an hour and eventually the medication often becomes useless and the pain is constant and sometimes enough so that the person can not leave home.

TN is more common in women than in men, and usually occurs after the age of 50, however it can present itself at any time, including just after birth. According to the latest statistics I was able to find, TN occurs in 12 of every 100,000 people.

The options for treatment include medication, surgery, yoga, exercise, acupuncture, aromatherapy, chiropractic, meditation, vitamin treatments and other natural treatments. Surgery is not often advised for people who suffer from TN2, as it has more risks and less proven results. As with anything, each treatment option has its own risks, and it’s own success rates. Success rates vary from person to person and all of the treatment options might not be advised for all people who suffer from TN.

Because TN is a pain disorder, it carries a high risk of developing depression and isolation issues. That makes it more important than ever that we educate people so that they understand that their friend is not dropping them, they are in a lot of pain… but a visit would be wonderful. They would appreciate you realizing they want to remain friends, but the pain is just too much to leave the house. 

I hope this has helped to bring some light to a very important topic.

Take care of yourselves ~C

64%

I am writing today about Spina Bifida awareness again.

My youngest has SB so it’s a subject near and dear to my heart. 

Today I want to talk about the fact that abortion rates for pregnancies with a diagnosis of Spina Bifida is 64%. I do understand exactly why this is. Doctors will tell you it is because people want “designer” families. Where if there is ANY known defect the parents will choose abortion more often than not. I am here to tell you that it’s really not that at all. At least not in most cases. So… if it’s not that, then what?

I have talked to several other parents who got the prenatal diagnosis, and 100% of the time they will look at you in the ultrasound room and say “do you have anybody here with you?” In the most sad voice you will ever hear. The panic will start to rise.
Sometimes they will tell you statistics. Other times they won’t. They looked at us and said “we are very sorry, he would have been a boy.” There is no faster way to send a pregnant lady flying out of your office sobbing uncontrollably than to make her think she has had a 2nd trimester miscarriage.

Then you will see your doctor… we went immediately to the clinic and they took one look at me and called the dr. He was busy, but we were escorted to a room where he came in almost immediately. He said to us “there are some concerns with the ultrasound” and I asked “wait… concerns? That’s all?” And he said “Yes. It appears part of the spine did not form correctly.” Silence. Then a sob. From me. A sob of relief. The doctor misunderstood and looked very concerned, until I said “but there is a heartbeat?!” He looked shocked and said “yes, absolutely.” And got the Doppler out so that we could hear it. 

2 weeks later, we went in for our first level 2 ultrasound. The first of 16. We went in to the specialist office and they again told us how sorry they were. I think that’s all they can say? I don’t really know, but it was the common reply when people found out we were there for a medical level 2 ultrasound. If you have never had a level 2 ultrasound I can tell you they take a long time. With my first one they measured my little guy, measured the spinal cord defect, measured all of his organs, measured his ventricles, and let me hear his heartbeat from each chamber. Some of the ultrasound was done in 3D as well. 

But then…

Blindsided again.

We were at the specialist clinic. The clinic that takes care of moms and babies when there are known problems. They sat us in the consultation room, brought in a HUGE folder, and sat across from us at a table. 

“Hello Mom and Dad” hi

“We trust you had a good drive in?” Yes, thank you.

“Ok well let’s get right into it and talk about your pregnancy” ok

“As you know, there are issues with the fetus, yes?” (Note they have not referred to him as “your child” or “your baby”) “yes, that’s why we are here”

“Ok well, given the levels of spinal cord injury, we can tell you he will likely never walk, sit, eat…” they told us he would be in a vegetative state for his entire life. They told us that his ventricles were pressing on vital parts of his brain and they would not develop properly.

“Wait, what?!”

Then… Then this.

“We want you to consider quality of life control.” What?

“We want you to think of his quality of life.” “Ok.”

“And we want you to understand that he won’t have any quality of life if you continue this pregna…” “NO.”

“No what?” “I am NOT aborting my baby!”

“Well if you can’t think of his quality of life, think of yours. Think about having such a severely handicapped child. Think about how that will impact your life. Your husbands life. Your other child’s life.” “NO and you don’t get to speak to me about my other child.” 
This went on for over an hour.

We left that meeting feeling overwhelmed and like nobody in the medical world was on our side. We went back every week for the check ups and every week we sat through that talk. Every week until I was 28 weeks pregnant. We reported them to our family doctor who wrote letter after letter in our support and telling them to lay off… our family dr was on our side 100% he said it was refreshing to see someone who didn’t want a designer baby… I replied with “I think you would find that less people want designer babies than you’re led to believe… I think if specialists didn’t try to scare parents off the bat, things would be very different.”


64%
How much of that is because specialists scare parents and make them believe they can’t handle the amazing child they have been trusted with? How much of that is on advice of the same Drs who have sworn an oath “to do no harm“?

Because let me tell you… they are doing plenty.

This is why we need education and awareness. This is why I will write post after post trying to show anyone who will listen that it’s such an amazing journey… any parent who might stumble across this blog when the words “Spina Bifida” first leave the Drs lips and you’re trying desperately to find a ray of hope… a good news article… anything in support of you… I support you. There are a lot of us who support you. Don’t be afraid to reach out!

I write because 64% is a number that I can’t wrap my mind around. It’s a number that makes me SO sad. It’s a number that I hope to help change.

I can’t physically speak to the parents getting these diagnoses… so I will write. As much as I possibly can. 
And I hope you will share these and they will reach someone who really needs to hear all of this.

Take care of yourselves. ~C

Spina Bifida awareness

Good morning everyone! It’s been awhile since I posted, it’s been crazy around my house lately.

Today I’m talking about spina Bifida. If you have a child with a different disability, let me know what it is and when awareness month is and you can either do a guest post about it or I will research and write one up!

So, my little man has Spina Bifida. Along with many other children who have SB he also has a chiari malformation and hydrocephalus. 
Spina Bifida is a spinal cord injury that happens in vitro and there really is no 100% for sure cause of it. The medical world says it’s a folic acid deficiency but I had been on folic acid for more than a year before I got pregnant. It is permanently disabling. No surgery or therapy can ever fully reverse it. THAT SAID, my kid was never supposed to crawl, walk, talk, eat, etc etc etc…

  • At 9 months old he couldn’t sit unassisted. 
  • At 11 months old he did so for the first time. 
  • At 10 months old he started to “army crawl” 
  • at 13 months he started to regular crawl. 
  • At 1 1/2 he got a walker and started to walk assisted. 
  • At 3 he started soccer in the walker. 
  • At 4 he got forearm crutches. He played soccer again using the crutches. 
  • He recently started walking short distances without the crutches.

Let’s run some statistics past you all, as this is an awareness post.

  • Spina Bifida is permanently disabling. It can get better with work and treatments but it can not fully go away.
  • SB happens in 1 in every 1000 births
  • 64% of pregnancies with prenatal diagnosis are aborted.
  • Sometimes -like in our case- folic acid is not enough… but it can help. Taking folic acid for 3 months before conception can decrease risk by up to 80%
  • SB occurs in the first 28 days of pregnancy – BEFORE you know you’re pregnant.
  • Children with SB and their families can and do lead very happy and successful lives.

To conclude I want to share this with you…

My husband and I do not treat our child with SB any differently than our other child. We expect him to TRY everything. As a result, he has come a LOT further than the medical world deemed possible. We push when it’s appropriate, and stand back and see how far it takes him. I will say though I’ve seen it both ways. Some family members (not immediate family… grandparents or aunts/uncles) insist on babying him. He’s 5 and someone likes to try feeding him still. He takes FOREVER to eat most days, but I refuse to go there. I will sit with him until he’s done eating but I refuse to feed him. When you treat him that way he 100% regresses. He starts crawling rather than walking. Yet when that person is gone who babied him, he starts walking again. We have asked them to stop and let them know if it continues they can not have meals with us again.

How do you deal with people who way overstep?!

Take care of yourselves!

~C

A Summer Like No Other

So there may be questions about why we are not meeting much this summer… It’s because our family is having a summer like we have never had before.

Summer for us is usually day trips to the lake or spray park. 

Not this year!

This year we have set out to make it the most memorable one yet. Not over the top, or something that we couldn’t do every year, but just SPECIAL. This year we went to the mountains for a week. Our youngest child has a goal of climbing a mountain… So after a particularly difficult appointment with the orthopaedic surgeon, we decided to make that dream a reality.

Seeing the surgeon was *really* not a positive experience this time. It was a hard meeting for us, and a harder meeting for our child. We are STILL dealing with the after effects of the meeting, a month later. So, we thought “what Better way to push this to the back burner than to tick off some goals from his goal list?!” 

My child has meylomeningocele spina bifida. L4-S4 or S5. What does that mean and why is it in bold? Well for you to appreciate this goal, you need to understand that. 

What does it mean?
Simply put, he can’t feel his legs most of the time and has very little control of his ankles. There are other things, but those two things are what is important for this story. He is getting more control every day. That, too, is important. For this story and for in real life!

So, back to climbing that mountain! We left the children’s hospital feeling not great. The mountains were a short drive away, and mineral hot springs do amazing things for our kiddos. So, off we went. If you have ever been to Banff upper hot springs, you know that the road splits. One way to the gondola, one way to the hot springs. So, we went to the hot springs. Little mister kept saying “wouldn’t it be cool to climb a mountain?” And older little mister said “sure would” so the hubby and I looked at each other and then at the mountain. 

After everyone was done in the hot springs, we took the road down. Instead of turning to follow the road at the Y, we turned to the gondola. 

Away we went, up the mountain on the gondola. Now, you can technically argue he did not climb the mountain, and you would be absolutely right, but he got to see the view from the top of a mountain, which was exactly what he wanted. It was an amazing experience for all of us. It’s all about how you look at things. Next year, we have an EASY hike up a different mountain planned, we just need to build his muscle groups up a bit more. He’s already stronger than he was at the meeting, because he’s more determined than ever now. He has seen the view from the top of the mountain. And oh how sweet that was. He has had a taste of what life is when you ignore all of the limitations that the medical professionals try to shove at you…

There is nothing sweeter in the world than seeing him grin and say “watch me” when they say “he can’t do that”… And now we will see it far more often. Because he realizes ANYTHING is possible if you’re willing to try, and look for different ways of doing it rather than the traditional ways.

Now we are at the lake for a month, and that has been so good for the kiddos as well. In the water, there is no disability or diagnosis holding them back… It’s just kids playing, having fun with other kids.

Nothing sweeter.

Life is amazing.


Take care of yourselves. ~C