Update

It's been a while since I've really had anything to post! We have been busy and my maternity leave is quickly coming to an end. So here's the latest update on Maddi:

-She continues to be a little rock star! She is rolling all over the place and getting stronger every day. She can also pull herself around the floor with her little army crawl!

-Maddi is still not able to bear any weight on her legs, but we received word that she will get a standing frame the next time we go to her Spinal Cord Clinic in Saskatoon. This will be the start of strengthening her legs so that she can eventually stand on her own! We had hoped to start this process in early December but she will need to be seen by her Orthopedic surgeon first so that she can verfiy that her hips are ready for this. Maddi has something called hip dysplasia which means that her hips will dislocate. It wasn't extreme enough that they wanted to do any bracing for this, but it will still be a bit of an issue moving forward. So for now we wait, and look forward to seeing Maddi in her stander in February!

-I go back to work January 11th and Madison will go to the Natural Wonder Early Learning Centre. She is such a social little baby, I think this will be a great place for her. Luckily there is funding that will pay for a one-on-one teacher for Maddi. We are very excited that a young woman who has worked at the centre for 8 years has asked to work with Maddi. She has 3 kids of her own and is a very nice, caring woman. Maddi will be in good hands! Luckily Maddi's physiotherapist will see Maddi right at the centre. She will also work with Maddi's teacher to train her on what type of excersizes and therapy she can do for Maddi on a daily basis. The one drawback to the daycare centre is that it's not wheelchair accessible, not in the slightest. They will be building a new centre though, opening around 50 new spots in a facility attached to the new elementary schools being built by the hospital. Thankfully it will be fully wheelchair accessible, as will the school! Maddi will go to that new school anyways so this will work out well!

-We are going to see an Opthamologist in Saskatoon in January. Madison seems to have a touch of strabismus so we are taking her to get it checked out. This is common with kiddos with SB so it's not a huge surprise. She may need glasses or some patching to help strengthen her eye muscles, or it may be nothing. We are glad to be getting it checked out though!

What about mom and dad:

-Greg and I were in Vegas last week and had an awesome holiday! We travelled there with Greg's sister Debbie and her husband Dave and together we took in some of the sights and sounds of Vegas. Oh, and we might have done a bit of shopping. Luckily Westjet didn't charge me for a 76lb suitcase. I'm not even sure how it's possible to fill a suitcase to be that heavy. Especially considering it was stuffed on the way down and weighed around 47lbs!!

I think that just about covers it for now! Sorry it's not a very exciting update but around here that could be a good thing as it means that Maddi is doing well and kicking Spina Bifida's butt!

Merry Christmas to all!

Love Meaghan, Greg and Madison

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:)

Where we are at now

The past seven months have been incredible. Maddi never ceases to amaze us, and her docs! We've been going regularily to the Kinsmen Children's centre in Saskatoon where she sees the Neurosurgeon, Urologist, Orthopedic specialist, Physiotherapist and Occupational Therapist! It's a busy day when we go for appointments but we are so thankful that the Kinsmen Children's Centre exists and coordinates all these appointments for us. We have also been going regularily to see a pediatric physiotherapist here at the hospital in Swift Current. It's really nice to be able to have those appointments here in Swift rather than having to travel more frequently to Saskatoon.

Maddi is doing very well so far. There's still a possibility that she may need a shunt, although now that she had made it this far without it, the chances of her needing it decline with each day that passes. We were given a list of signs to watch for which included, fussiness and irritability, vomiting, sunset eyes, etc. I still panic a little every time she is out of sorts and I wonder if she's having a headache and developing hydrocephalus, but so far she hasn't shown any signs at all. Her neurosurgeon is very happy with her progress.

She is now sitting up on her own! Her physiotherapist tells us this is great because it shows that she has some control of her glutes which are major stabilizing muscles she will need control of so she can walk. Currently she doesn't really bear weight on her legs. When you try and stand her up she will sometimes push a little but for the most part her legs just collapse. I am sure that someday she will bear weight, we'll just be waiting a little longer to get there. She's rolling over and can move herself around a bit on the floor. It's so cute to watch her play:)

Our most recent report from the urologist is that everything looks good and seems to be functioning as it should. There is currently not any elevated pressure on the bladder, and no reflux to the kidneys. We are going to catheterize her again for another trial period but as long as the residuals are low, we will be able to stop that for now with the expecation that sometime down the road we will need to start doing it again on a permanent basis. I dread starting it but once I've worked it into our daily routine it's not that big of a deal!

I think that brings us up to speed and catches you up on where Maddi is at.

We are keeping busy as always between our neighborhood moms group, starting a music class next week and swimming lessons in October. Greg and I will also start playing hockey again soon. It's going to be a busy fall, mat leave will be done before I know it:(

Hopefully you enjoy our blog and enjoy getting to know the Lawrences!

Madison's Story

I originally posted this on facebook soon after we were home from the hospital so I figure this is a good place to start this blog and tell our story...

Our beautiful daughter Madison Elizabeth was born Thursday Feb 10th at 6:58 pm, 8lbs 12oz. As soon as she was born we saw the open lesion low on her back and had to idea what it was. I naively thought it was just skin that would need to be closed up, but once the pediatrician arrived at the hospital he started using the words Spina Bifida and then I realised that the defect on her back was a little more serious than I had originally thought. A neurosurgeon in Saskatoon was contacted and said Madison would need to be sent by air ambulance right away. I was able to travel with her in the air ambulance Friday morning and Greg had to drive to meet us up there.

Saturday afternoon Madison had surgery on her spinal cord and her back was closed up. It was so hard to watch her go into surgery, and waiting for it to be over was especially hard. Thankfully we had my parents up there that day and they were able to provide a distraction for us. It was such a relief when the surgeon came and spoke to us and told us that everything had gone how he had planned. After this we really started processing everything that was going on...

Madison was born with a condition called myelomeningocele which is a form of spina bifida. There are lots of resources on the internet that can fully explain it for you but essentially it means she has an incomplete formation of her spine and spinal cord. It results in partial or complete paralysis and loss of sensation in the legs, and affects the functioning of the bowel and bladder. While this all sounds pretty scary, the important thing to know is that all kids with spina bifida have different levels of functionality. A lot of it depends on the site of the lesion and luckily Maddi's was quite low. Her neurosurgeon believes that her spinal cord damage begins beyond the L5 level. She quite strong in her hips and knees so that's a great sign!

One of the complications of Spina Bifida is that once the defect on her back was closed up, the cerebrospinal fluid that was leaking from the site of her lesion now has nowhere to go. We have to watch her for signs of hydrocephalus and she may need to have another surgery to have a shunt placed to deal with the buildup of fluid. We are regularily measuring her head and carefully monitoring the fontanel. There are also a number of other signs and symptoms that we are watching for. For now her body is managing to get rid of and deal with the fluid so we are remaining hopeful that this will continue. This could change quickly though and we could be heading to saskatoon for another surgery within days, weeks or months.

We also have to watch her carefully for signs of a Urinary Tract Infection. Because her condition affects the functionality of her bladder she may not be able to fully empty it. When we left the hospital her bladder was emptying well, but this could change over the next few months and eventually we may need to learn how to catheterize her to empty her bladder for her.

Maddi had an MRI before she was discharged which showed that she also has a Chiari II Malformation. This goes hand in hand with Spina bifida. It basically means that the brain stem is lower than usual and compresses the upper part of the spinal cord in the neck. Again, there are several resources out there that can explain this in more detail for you. While there is a long list of symptoms that go along with this, Maddi has so far escaped most of them, but this could change as she grows.

This is a very quick explanation of what is going on with Maddi but the reality is that we don't know how all this will affect her in the future. This is really the hardest part for Greg and I. While we are trying our best to enjoy Maddi and get to know her as she is right now, we can't help but think about the future. We have to keep reminding ourselves to take this all one day at a time. This is definitely not what we had planned when thinking about having our first baby but Madison is a wonderful gift that has come into our lives and we are so glad she is ours:) We will do our best to give her everything she needs to grow and develop to her fullest potential but ultimately, she will write her story. She is so fiesty, strong and stubborn which is great to see because we know that she won't let anything stand in the way of what she wants to do or where she wants to go!!

I should also mention that there is a place in Saskatoon called the Kinsmen children's centre in Saskatoon which is an awesome place that will coordinate all of the care for Maddi until she is 18. We will see all of maddi's doctors and therapists in this once place and it is all coordinated for us! we will also be able to meet other families and spina bifida kids through the center. We are so grateful that a place like this exists as we could not imagine where we would have even started to get all of the care she will need organised.

It's been an interesting ride we've been on since Maddi arrived, filled with emotional highs and lows. We've had a lot of information to take in and learn in such a short period and most of the time it's extremely overwhelming. I feel like we've had to become experts on Spina Bifida but we still have a lot to learn. Please feel free to ask us questions if there is anything you are curious about in regards to Maddi, or spina bifida in general. We are going to be Maddi's advocates and educating our friends and family who are not familiar with this condition will be something we need to do! We might not have all the answers but we are definitely willing to help everyone understand as best as we can.

Thanks to you all for keeping Madison in your thoughts and prayers, I know that she was feeling all the positive energy being sent her way :) Greg and I sure felt it too and it really helped us to know we had (and still have) so many people supporting us through this. We can't wait for you all to meet her!

Meaghan and Greg

P.S. We would love to connect with a local family who has a kid with Spina Bifida. If any of you know of anyone, please let us know!