Take That Spina Bifida!

In the Spina Bifida community, "Take That Spina Bifida" is a term used when our kiddos amaze us and do things that we were told they might not do. Well I feel like we are having a "Take that Spina Bifida" kind of week!

This week Maddi started pushing herself up to a sitting position from laying down! Now for the typical baby this is just another milestone to hit so it might not seem like a big deal. As a parent of a child with SB, this is a huge deal! After consulting "Dr. Google" soon after Maddi was born, and also after listening to what the doctors told us, we weren't sure that Maddi would even be able to sit up on her own, or else she would likely be very delayed in doing this, let alone push herself up to a sitting position. Well not our little Maddi! She sits up strong, and now can push herself up to sitting from laying down. It's a wonderful thing to watch happening! She also started clapping this week! Her mom and dad are so proud. Although, if you want her to clap for you don't ask for a round of applause, ask her for a round of Patty Cake and she will know exactly what to do:)

Also this week, Maddi needed to have a Urodynamic Study done. We were in Saskatoon once again, this time in unfamiliar territory at City Hospital. I am not a doctor (although I am starting to feel like one some days), but what the urodynamic study consisted of was emptying Maddi's bladder with a catheter, filling it up with some dye, all while taking x-rays to watch the shape of the bladder and check for reflux to the kidneys. They also measure the pressure on the bladder.

Spina Bifida means that part of the spinal cord did not fully develop and it's the lower part of the spinal cord that controls bladder and bowel function. For this reason, most people with Spina Bifida have issues with with their bowels and bladder. Most will need to catheterize in order to completely empty their bladder. The inability to completely empty the bladder, and also the introduction of a catheter into the bladder, creates a susceptibility to infection and UTI's are common among those with SB. Also, reflux of urine to the kidneys can be common for people with SB which can lead to kidney infections and in extreme cases, kidney failure.

Because of all these issue with bowels and bladders, the Urodynamic study is done. In yet another "Take That Spina Bifida" moment, Maddi rocked the test! The urologist was very happy with how it went. He told us that the shape of her bladder is excellent, nice and round, the pressure on her bladder stayed low even when it was full, there was no reflux to the kidneys and they saw that she was actually trying to empty the bladder on her own when it was full!!! He finished by telling us that he saw no need to catheterize, for now anyways. We are ecstatic about these results, it couldn't have gone much better I don't think!

All in all we are quite amazed by our little girl. She can't crawl yet but don't let that fool you, she can get around a room in the blink of an eye. If I leave her for a minute and come back I some days wonder if she didn't get up and run she moves so far so quickly! Today I had put the TV on a music channel, left the room to go to the washroom, come back and she has moved all the way across the room to the remote and has turned the channel to Sesame Street. She probably used the guide and everything to find it. She's that smart. Oh and she likes to text on the blackberry too. Don't be surprised if someday you get a random text or phone call from my phone. It might be her:

Here's another one just because it's cute:

I better remember to take this down before she's old enough to find that I posted it on the Internet:)

So this week we are saying "Take That Spina Bifida", and I am sure that given Maddi's determination, stubbornness and her drive, I am sure we will be saying that a whole lot more in the future!

Spina Bifida Awareness Month (USA)

In honor of Spina Bifida awareness month in the States, I thought I would share some information about SB for you all. Thanks to Nate's mom Colleen for putting this together for everyone to share!

Spina Bifida is the most common permanently disabling birth defect, affecting about one out of every 1,000 newborns in the United States and Canada.

What is Spina Bifida? It's a birth defect that results in the spinal cord protruding from a baby's back. The back can be surgically closed before or after birth, but damage to the spinal cord can cause paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other challenges.

What causes it, and how can it be prevented? No one knows what causes Spina Bifida, but women can reduce their risk by up to 70% by taking 400mcg of folic acid daily for three months prior to conception. Every woman of childbearing age should take a daily multivitamin.

What are people with Spina Bifida like? There is a wide range of outcomes. Some are barely affected, some are severely disabled, and most fall somewhere in between. Some use wheelchairs; others use braces, crutches, or walkers; and some walk independently. Most have normal intelligence. Spina Bifida is only one part of them and does not define them. They can become teachers, doctors, musicians, athletes, or anything they want to be.

What do you do when you see someone with a disability? Instead of looking away, make eye contact and smile. Instead of shushing children who ask questions about a wheelchair or other differences, encourage children to ask the person about it, or answer with: "Some people's legs don't work the same as yours, so they need help to get around." Emphasize people with disabilities are more like everyone else than they are different.

If you would like to learn more about Spina Bifida, visit www.spinabifidaassociation.org.

New AFOs!

On September 20th Maddi, mom and I packed up and travelled to Saskatoon. Maddi had an appointment to get brand new AFOs made for her feet. For anyone curious, AFO stands for Ankle Foot Orthotic. They are little braces that hold her feet in a neutral position. Due to some muscle tightness, her little feet want to turn in so this helps keep her feet where they should be! From what I understand, as she grows she will likely always need a pair of AFOs to help her walk. Her little feet are paralyzed from the ankle down, although she has been having some movement in her right foot which is very exciting. We can't wait until she is older and can tell us whether she has any feeling in her feet!

For now, she wears her AFOs for a few hours each day. We take them off when she sleeps and for some tummy time but otherwise we try and keep them on her as much as possible.

Maddi has always been pretty adaptable, no matter what situation you put her in, or where you take her, she is happy! So it really should have come as no surprise that getting casted was no big deal. She sat so still for her Orthotist Grant, and smiled her super sweet smile:)