Tag Archives: spina bifida

Aroma Sense Therapy & Spina Bifida

Aroma Sense Therapy & Spina Bifida

This post has been sponsored by Aroma Sense USA. All opinions are the property of Life as a Convert. - Seriously guys, go check them out!

Aroma Sense and Stretching - Spina Bifida

Have you ever met somebody in a wheelchair?

Probably.

Did they have spina bifida?

Possibly.

My son, Aloshua, was born with spina bifida. Spina bifida is a neural tube defect affecting approximately 1-10 out of every 1,000 births. One thing people with spina bifida struggle with is atrophy. This is a fancy way of saying that because certain muscles (like those in the legs) are underused, they begin to waste away and can become tight making it difficult and often times painful for the individual to function normally.

Aloshua - 11 Year old with Spina Bifida - Wheelchair User

Have you ever tried to do the splits, only to end up crying out in pain because you pulled a muscle? It’s pretty painful. Now imagine that this happens whenever you stretch your legs AT ALL. This is what some people with spina bifida experience on a regular basis. Since their legs don’t stretch the way that most people’s do, even basic stretching can be painful. In fact, stretching their legs is something that is often a primary focus during physical therapy sessions.

Spina Bifida and Stretching

Parents of children with spina bifida are taught when their children are young how to stretch their muscles and it is important that it be done consistently. This is something that my son, Aloshua, struggles with. It is painful and can often leave him sore if he is over-stretched. I recently discovered that some parents use bath products to help make routine stretching easier on their children.

The more I thought about it, the more I knew I wanted to try bath time for our stretching regime.

Kid with Spina Bifida in Bath stretching legs with Aroma Sense Luxury Shower Head

Thanks to Aroma Sense and their handheld shower heads, I can join in on bath time stretching. Aroma Sense is a US based company specializing in luxury shower heads. Each shower head comes with a cartridge of an essential oil based aroma therapy blend. Additional cartridges can be purchased through their website. There are numerous options including lemon, citrus mango, lavender, jasmine, and eucalyptus. You can see the benefits of each aroma therapy scent on their features page.

I chose lavender.

Aroma Sense Shower Head Lavendar Replacement Cartridges

Lavender oil is helpful in treating migraines, headaches, depression, nervous tension and emotional stress. It can inhibit bacteria that causes acne, and help to regulate sebum excretion. In aromatherapy, it induces sleep to relieve insomnia and makes an excellent solution for anxiety issues. (Source)

I like that lavender has so many added benefits that weren’t even on my radar originally. Aloshua struggles with migraine headaches, my daughter and I struggle with insomnia, and my older son struggles with acne, so it is a win-win for all of the family.

Installing Aroma Sense Luxury Shower Head

Setting up the shower head was a breeze. We previously had a shower hose from our durable medical equipment supply company. All I had to do was unscrew the head from that hose and screw on the new shower head. I chose the handheld option for the ability to target specific areas of his legs. Aroma Sense also offers wall mounted version.

Not only is the water pressure great, it is an even pressure and uses less water than a standard shower head. Take a peek at this video to see a similar comparison of what we previously used to what we are using now:

The only con I have ran into is the inability to turn the hose off at the handheld part. This is not a big deal as I am able to turn it off at the wall.

Using Aroma Sense Therapy

As you can see, the hose I have is long enough to reach the entirety of the tub, allowing Aloshua to hold the shower head himself so I can stretch his legs.

Aroma Sense Shower Head - Aroma Therapy Massage Stretching

Since getting the Aroma Sense shower head, Aloshua has been more willing to allow me to stretch him. The combination of warm water and lavender scent relaxes him and reduces anxiety related to past, painful stretching experiences.

If you have a child with spina bifida and are looking for a better way to help loosen those tight muscles, I definitely recommend Aroma Sense’s Luxury Shower Heads. If you are anybody else, I also recommend getting one. Hello, eucalyptus and jasmine scents! The cartridges are affordable and very easy to change out. Just unscrew and pop a new one in.

Be sure to like Aroma Sense on Facebook and receive great deals and other health information.

Have you ever used essential oils in your shower routine? 

What is your favorite scent? 

Spina Bifida: Aloshua’s Story

Spina Bifida: Aloshua’s Story

My 10 year old son, Aloshua was born with spina bifida.

Aloshua Story Spina Bifida Awareness Month

I realize that a lot of you already know that, but I am often asked questions regarding how it affects us and his abilities. Since October is Spina Bifida Awareness Month and I realized that I never even shared his spina bifida story on my blog I thought I would do that and answer some of the most frequently asked questions about spina bifida.

What is spina bifida?
Spina bifida is a neural tube defect present at birth. While a baby is forming in the womb, the neural tube closes very early. In children with spina bifida, the tube doesn’t properly close causing the defect. These illustrations show it better than I could explain it. It ranges from moderate to severe.  Aloshua was diagnosed with the most severe type (myelomeningocele), however he did not have anything protruding from his back. He did have a hole going straight into his back, open all the way to his spinal cord.

What is Spina Bifida(Sourced from Google Images)

Different types of Spina Bifida(Sourced from Google Images)

Is spina Bifida a death sentence?
No! Spina bifida is not a death sentence. Sure, there are some complications associated with spina bifida that could result in death, but if we are getting technical here, any person who has a body (read: everyone) could have some “complications” resulting in death. Most people with spina bifida live well into adulthood.

How is spina bifida diagnosed?
Spina bifida is usually diagnosed during pregnancy via ultrasound scans. It can also be detected with blood tests or at birth upon physical examination.

How was Aloshua diagnosed with spina bifida?
Funny enough, Aloshua was NOT diagnosed during my pregnancy or immediately after birth. In fact, all of my ultrasound scans appeared normal, except that he was measuring large for his gestational age. Looking back, this should have been a clue, but as far as any defects, there were none visible on ultrasound. We just assumed that I birthed large babies since Kaia, my first born son, was also on the large side for his gestational age.

Aloshua was born* at 27 weeks gestation and was not breathing on his own. I remember the doctors saying “hydrocephalus” before they could even get him to the table to start CPR. I knew what hydrocephalus was and immediately thought back to the ultrasound where his head was measuring larger than what it should have been. (Since his stomach was also measuring larger, they weren’t too concerned at the time**). He was born facing sideways/slightly up. During CPR he was placed on his back and immediately put on a high frequency oscillating ventilator (HFOV). This is basically a CPAP machine that vibrates. It is supposed to be easier on the under develop lungs of micro preemies. I’m not sure exactly why, but patients on this machine – compared to a regular ventilator – must remain on their backs.

Aloshua on HFOV in NICUAloshua on the HFOV, hours after birth, before the spina bifida was found.

Aloshua was a day old when he was diagnosed with spina bifida. It just so happens that a nurse was lifting him up to change his diaper and noticed a hole in his back. She called the doctor who then examined him, ran a few tests, including MRI, and then came into my hospital room and informed me that he had spina bifida, hydrocephalus, and a Chiari II malformation.

I was then told that he would need surgery once he was stable and could be transferred to the nearest Children’s Hospital to repair the defect. Because I lived so far away from the hospital where I gave birth, they allowed me to stay another day so I could be close to him. Before I was even released from the hospital, they had transferred him to Arkansas Children’s Hospital. Within a few days of his birth, he had surgery to repair the defect.

Aloshua prior to spina bifida repair
Aloshua at ACH, prior to his first surgery. The gauze on his back was covering the spina bifida.

Aloshua in the nicu after surgery to repair spina bifida
After surgery to repair the spina bifida.

*I will share his birth story one day
**His stomach was measuring larger due to another abnormality called Malrotation.

Is there a cure for spina bifida?
No. There is no cure for spina bifida but there are treatment options. Surgery is one of those. Babies born with spina bifida normally have surgery within hours or days of birth to repair the defect. This does not heal any damage that has already been done to the spinal cord and nerves surrounding it.

Does spina bifida cause paralysis?
Yes, but not always. Spina bifida is usually referred to as being a certain level, meaning which part of the spine the lesion occurred. Typically, the higher level, the more paralysis. This is because the functions of the body are controlled by different levels of the spinal cord. (Check out that link for an explanation of the functions at each level) Usually a person with spina bifida will see decreased movement, function, or sensation from the level it occurred and below. Aloshua’s occurred somewhat high at T12/L1. Depending on how severe the defect is, there could be complete paralysis, or none at all. Each person is different.

Can Aloshua move his legs?
Yes! This question always made me giggle when the doctors would ask if he had any mobility in his legs. Despite his diagnosis, he has very good mobility and was able to kick quite hard from an early age. Even though he can move his legs fairly well, he has no control over the muscles along the backs of his legs. This limits movement and makes his legs weak.

Can Aloshua walk?
With the help of braces and a walker, he can walk. He tires out very easily and cannot walk long distances. He uses a wheelchair when out and about. At home, he prefers to crawl. His physical therapists are currently working with him using arm/elbow crutches. He is still quite unsteady with these, but making progress. It is our hope that he will become strong enough to use the crutches about 50% of the time and the wheelchair for longer distances.

Aloshua walking with braces and walkerAloshua with his physical therapist practicing walking with KAFOs and a walker.

Does Aloshua wear diapers and will he always wear them?
Aloshua wears diapers and will likely always wear them. He does not have full control of his bladder or bowel. He also uses a urinary catheter to help empty his bladder. He currently has no interest in trying to use the toilet or learning how to cath himself. It makes it hard to decipher if he can even tell when he has the urge to go.

What is hydrocephalus and Chiari malformation and how are they treated?
Hydrocephalus is basically a build up of fluid in the ventricles surrounding the brain. Most people with spina bifida also have hydrocephalus. Some are able to manage it on their own, but others require a shunt that drains the excess fluid into a specified place in the body. Aloshua has a VP shunt. This shunt drains the fluid from his ventricles into his peritoneal cavity in the abdomen. As with all medical devices, it can, and has failed. Surgery has to be done to repair or replace the shunt. He has had his repaired due to malfunction, and replaced due to infection.

Aloshua after shunt placement for hydrocephalusAloshua after surgery to place a VP shunt for hydrocephalus.

Chiari malformation is a hind brain herniation. Parts of the cerebellum extend past the skull. This can cause an increase pressure, and also inhibit cerebral spinal fluid flow. Some people have surgery to help decrease the pressure caused by the herniation. Sometimes, a shunt is enough to decrease the pressure to a manageable amount, but the only treatment for Chiari is surgery. Aloshua has not had a Chiari decompression surgery.

What causes spina bifida?
Spina bifida is a genetic disorder but can also manifest in families with no prior history. It is believed that a lack of folic acid can cause spina bifida. Funny enough, at the time of my pregnancy I was still breastfeeding my older child and taking prenatal vitamins.

Did you do anything different with your last pregnancy?
Yes. Because of the belief that a lack of folic acid can possibly cause spina bifida, I made sure to increase my folic acid intake as well as continue my prenatal vitamins. To this day, I still take prenatal vitamins with folic acid. I also had numerous anatomy scans checking for spina bifida and other defects. Since Aloshua’s wasn’t detected on ultrasound, I wouldn’t let myself relax too much until my daughter was born and I could see with my own eyes that she didn’t have it. – Funny story.. My oldest son was diagnosed with cleft lip and palate in utero, but he came out perfectly fine. It just goes to show that ultrasounds can be wrong either way.

How is Aloshua affected emotionally? 
I have always made it a point to raise Aloshua with the mindset that he is not “disabled”. At the same time, a hospital life with endless appointments and therapy visits is something he has always known. He is a very happy child despite that and doesn’t let his condition get him down. He realizes that he is different than most kids, but he also knows that there are plenty of other people in wheelchairs and that people come in all kinds of abilities.

Because of his diagnoses there is an increased risk of depression, but as of right now, he does not show any signs of depression.

What do we wish adults knew about him/spina bifida?
He is a normal kid. Spina bifida doesn’t define him and his wheelchair doesn’t define his abilities. If the chair fits, then there is a way to accomplish anything. If the chair doesn’t fit, then we find other ways to do things. He isn’t helpless. He is very independent. He doesn’t need somebody to hold all the doors open for him, or help him at the slightest hint of a struggle.

Funny enough.. Aloshua is very independent and likes to do things himself. He often gets very angry at me when he is struggling and I try to help him. If a stranger helps him, then he smiles and accepts the help, but he often tells me afterward that he didn’t need the help.

He doesn’t lack attention and doesn’t need to be showered with extra praise or gifts. While it is sweet that many people want to give him things, it is only teaching him to expect these gifts his whole life, and it’s pretty crappy especially when his siblings are standing by and get nothing.

Aloshua does not need pity either, and I feel like sometimes people give him things or do things for him out of pity. Trust me, he does not feel sorry that he is in a chair and you shouldn’t feel sorry for him either.

And lastly, it would be pretty weird if somebody came up to you and said “Wow, you walk really good”. It is equally as awkward when somebody tells him that he “gets around really good in his wheelchair”. His wheelchair is how he is mobile. Of course he gets around good in it.

If you find yourself at a loss for words when you come across him, or anybody in a wheelchair, just treat them normally! Don’t do anything differently than you would with other people. Chances are, if they need help opening the door, or something else, they will ask. By you immediately jumping in, it is giving off a vibe that you feel they are incapable, and it isn’t taken to lightly (see the part above where Aloshua gets angry when I intervene too quickly).

Finally, how is Aloshua doing now?
Great! Despite all the problems he has faced, and the diagnoses he still has, he is making continued improvements in all areas of his life every day. He recently had a Pulmonary appointment and the doctor remarked that this was the healthiest he has ever been and the best he has ever breathed.

Aloshua at a recent doctor appointmentAloshua at a recent doctor appointment

I hope that covered all the questions we frequently get. If you have any additional questions, let us know in the comments.

Losh update – 1 year post trach decannulation

Losh update – 1 year post trach decannulation

Approximately one year ago Losh got his trach out. I wanted to give a little post trach decannulation update:

Trach Decannulation Day – June 4th, 2014

The doctor assured us that within a few months the hole would close, and if it hadn’t closed near the 1 year mark that they would discuss surgically closing it..

Immediately post trach decannulation

ENT continued to monitor the stoma and by the six month mark, his hole was still ever so slightly open, but the Dr. decided to go ahead and discuss surgical closure.

Nearing the one year mark.. Hole still open, but only slightly.

Nearing the one year mark.. Hole still open, but only slightly.

Because he was already scheduled for a surgery at the end of April, ENT decided just to tag along with that surgery and close it then.

So, on the 28th of April, Losh had his stoma surgically closed.

In Pre-op waiting for surgery...

In Pre-op waiting for surgery…

In recovery (Click the image to see the VLOG on youtube)

In recovery (Click the image to see the VLOG on youtube)

You can click the image to view the vlog. It goes into a little more detail, but surgery went well. He had some oral work done (sealants, crowns, and a root canal), bronchoscopy, and stoma closure. Recovery didn’t go as well. He was upset because he woke with a bad taste in his mouth and he wanted me. He kept dropping his sats and needed to be put on oxygen. They kept him on it overnight along with an apnea monitor. In the morning, they downloaded the results, took him off of the oxygen (which he kept placing on top of his nose anyway) and told us we could go home!

He is almost 2 weeks post-op and doing really well. There have been no complications. The site is healing up nicely. In a few more weeks he will just be another kid in a wheelchair instead of a “trach kid”.

That is an awesome feeling!

Life without a trach..

It has been a month since Losh had his trach removed. I have 2 children that do not have trachs and have never had trachs, but we are still learning how to live life without a trach.

life-without-a-trach

I never let go of the thought that he could have to have his trach replaced, but so far he has done well without it. A part of me is still…

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