Well, I had a blast posting lots of information about SB last month! I'm glad I got a couple submitted questions and was able to answer what was on your mind.
When I started this blog last year, I wanted to have a place to share our story with family and friends. I've been overwhelmed by how many people are keeping up with us... some people that we've never met. Thank you for reading and learning about Spina Bifida, thank you for praying for us, thank you for supporting us, and thank you for reading our story. I hope that we're able to educate others about SB, and I hope that Leah will bring awareness to life with a disability. Actually I don't think she really has a disability, she just will do things differently. I love watching her figure out how to get around and move her body in a way that is uniquely hers. I can't wait to see what she's able to do as she grows up!
Thursday, November 1, 2012
Thursday, October 25, 2012
SB Month Wrapping Up
I can't believe October is already coming to a close. Leah's birthday party invitations came in the mail today, which means her birthday is just over 2 weeks away. It doesn't seem possible that we've been in this for a year already. I remember how nervous and anxious and stresed out I was at this time last year. Then I look at her and I can't believe I was ever nervous and anxious and stressed out I was!!
She's doing lots of new fun things, like waving (which is really just sticking her arm out and sometimes wiggling her fingers), clapping on demand to "Good Job, Leah" and just tonight started playing peek-a-boo. She knows where the baby is in the mirror or picture, she knows Mama, Dada, Jack and Jill now, though she's not saying any actual words. And there's just nothing like hearing her big belly laughs... it's so much fun to get her going! I love that she's getting so much more fun but I'm also sad that she's not going to be a baby much longer. This week I had a few long days at work so last night I rocked her to sleep and held her for an hour while she slept before putting her down because I had missed her.
Then there's the matter of her mobility. She's becoming more mobile, scooting around on her tummy, and sliding on the wood or tile floors. She's learning about her zip-zac, though she's not proficient in it yet. While she is making progress, she's not as mobile as she'd like to be. I can tell that she wants to be able to go explore or get a toy. She points to things on shelves or on the floor that she wants. It makes me realize more and more that we need to get her into more rigorous physical therapy. We go back to our full day of Spina Bifida doctor appointments around the time she turns 1, which is coming up, and I'd really like to talk to our doctors about recommending a program for her.
So that's just about it for an update on Leah. I've always said that no news is good news. We've just been plugging away, enjoying our 11-month old, watching her learn something new everyday, and snuggling with her as much as possible.
She's doing lots of new fun things, like waving (which is really just sticking her arm out and sometimes wiggling her fingers), clapping on demand to "Good Job, Leah" and just tonight started playing peek-a-boo. She knows where the baby is in the mirror or picture, she knows Mama, Dada, Jack and Jill now, though she's not saying any actual words. And there's just nothing like hearing her big belly laughs... it's so much fun to get her going! I love that she's getting so much more fun but I'm also sad that she's not going to be a baby much longer. This week I had a few long days at work so last night I rocked her to sleep and held her for an hour while she slept before putting her down because I had missed her.
Then there's the matter of her mobility. She's becoming more mobile, scooting around on her tummy, and sliding on the wood or tile floors. She's learning about her zip-zac, though she's not proficient in it yet. While she is making progress, she's not as mobile as she'd like to be. I can tell that she wants to be able to go explore or get a toy. She points to things on shelves or on the floor that she wants. It makes me realize more and more that we need to get her into more rigorous physical therapy. We go back to our full day of Spina Bifida doctor appointments around the time she turns 1, which is coming up, and I'd really like to talk to our doctors about recommending a program for her.
So that's just about it for an update on Leah. I've always said that no news is good news. We've just been plugging away, enjoying our 11-month old, watching her learn something new everyday, and snuggling with her as much as possible.
Friday, October 19, 2012
Sunday, October 14, 2012
Home Sweet Home
In honor of SB Awareness month, my next topic will be about our home, why it's perfect for a little girl in a wheelchair and what modifications we may need to make in the future. We've lived in this house for 3 years, way before becoming a family of 3 was a consideration. I would consider this an impulse buy... if you know Ty at all, you know that he can sometimes get funny ideas into his head and he won't stop until he sees it through. The summer of 2009 we started talking about someday moving into a house (we were living in a townhome at the time). Yes, that would be great, we'd have a yard and have more privacy. I was literally painting the last room of the townhome that needed to be painted when we found this house.
I have to admit, I wasn't in love with it. There were a lot of things about this house that I didn't like... first and foremost it was a 1-level. I always thought that I wanted a 2-story house and the thought of having everything on the same floor didn't really appeal to me. But in the back of my mind as we were going through this house, I kept hearing a little voice telling me that this was our house. I fought it. I tried to come up with excuses why I didn't like it. And yet, here I am 3 years later in this house. I've had other times in my life when opportunities have presented themselves that I have tried to resist but in the end I realize that things worked out the way they are supposed to. In the end, this is the house we were meant to be in.
I think I've mentioned before a little bit about the house, but let me elaborate. Our house is a single story, and while we do have a basement, it's yucky. It has low ceilings and because it's an old house building in the 1940's, there are lots of spiders and other creepy crawlies that I don't like to think about. It's not really a place to hang out. The only steps we have are 2 to get from the garage into the house, and 1 down to the sunken 4-season room, which are easily made accessible. Our driveway is completely flat out to our street, perfect for a little girl to wheel out to the school bus.
We have 3 bedrooms and a den. Right now Leah is in the bedroom closest to ours. Once she gets a little bit older and we're able to better identify what special accommodations she'll need, we have the den that we'll likely convert to her room. It has a bathroom right next door that badly needs updating (it is original to the house, which was built in the 1940's!!!, pink tile and all!!). We'll make that a suite for her, complete with a wheelchair-accessible bathroom. We also plan to put french doors to the outside patio so she can have another escape route if something happens. My biggest fear is that she will be trapped in our house without a way to get out.
The rest of the house is fairly accessible and could accommodate a wheelchair with some minor modifications. We'll have to enlarge a few doorways, and when we get new carpet, it will have to be a very short weave so she can easily get around. Our kitchen has a lot of cupboards and drawers under the counters, and we'll use one section to put bowls and cups and plates for her to reach. The good news is that we don't have to do major renovations, or consider moving to another house. As for me? I've grown to love this house, even more after finding out about Leah's condition and realizing how perfect this house is for her.
I have to admit, I wasn't in love with it. There were a lot of things about this house that I didn't like... first and foremost it was a 1-level. I always thought that I wanted a 2-story house and the thought of having everything on the same floor didn't really appeal to me. But in the back of my mind as we were going through this house, I kept hearing a little voice telling me that this was our house. I fought it. I tried to come up with excuses why I didn't like it. And yet, here I am 3 years later in this house. I've had other times in my life when opportunities have presented themselves that I have tried to resist but in the end I realize that things worked out the way they are supposed to. In the end, this is the house we were meant to be in.
I think I've mentioned before a little bit about the house, but let me elaborate. Our house is a single story, and while we do have a basement, it's yucky. It has low ceilings and because it's an old house building in the 1940's, there are lots of spiders and other creepy crawlies that I don't like to think about. It's not really a place to hang out. The only steps we have are 2 to get from the garage into the house, and 1 down to the sunken 4-season room, which are easily made accessible. Our driveway is completely flat out to our street, perfect for a little girl to wheel out to the school bus.
We have 3 bedrooms and a den. Right now Leah is in the bedroom closest to ours. Once she gets a little bit older and we're able to better identify what special accommodations she'll need, we have the den that we'll likely convert to her room. It has a bathroom right next door that badly needs updating (it is original to the house, which was built in the 1940's!!!, pink tile and all!!). We'll make that a suite for her, complete with a wheelchair-accessible bathroom. We also plan to put french doors to the outside patio so she can have another escape route if something happens. My biggest fear is that she will be trapped in our house without a way to get out.
The rest of the house is fairly accessible and could accommodate a wheelchair with some minor modifications. We'll have to enlarge a few doorways, and when we get new carpet, it will have to be a very short weave so she can easily get around. Our kitchen has a lot of cupboards and drawers under the counters, and we'll use one section to put bowls and cups and plates for her to reach. The good news is that we don't have to do major renovations, or consider moving to another house. As for me? I've grown to love this house, even more after finding out about Leah's condition and realizing how perfect this house is for her.
Monday, October 8, 2012
Great Question
I got a great question from our survey that I would like to answer.
Q: Do you know if there is a point at which you might know if Leah will be able to walk with or without assistance?
A: Right now Leah does not have feeling or movement in her legs below her hips. When she's on her tummy, she can wiggle her butt and move her hips, but the rest of her legs don't move. This does make it more challenging for her to walk on her own. But moving her hips is a good sign that she'll be able to move her legs forward to walk with some sort of help, either from a walker or crutches. When she turns 1, we'll start seeing the rehabilitation doctor and hopefully get her into a stander. This will help her start bearing weight on her legs and getting her used to the process of walking. We'll also start getting her fitted for braces on her legs, as she will need that support. We will do everything we can to enable her to walk, but it's going to be up to her to decide if she wants to or not.
In the short term, yes, I truly believe she will walk. I think she'll need braces on her legs and a walker to help her, but I think she'll do it. As she gets older, I think she'll prefer to be in a chair. Walking is hard work, and she can probably get around a lot more quickly and keep up with her friends in a chair. But that's really up to her. Again, we'll help her be mobile in any way she wants and let her decide what works best for her.
In the longer run, I hope to see advancements in technology and science that will allow her to walk all on her own. I can't even imagine what is going to be available in the next 10-20 years, maybe there will be a revolutionary surgery that will reverse the effects on her spine. Maybe there will be bionic legs or cell regeneration that will allow her to regrow her legs. Who knows?!?!!
Thanks for the great question. Please feel free to ask more questions if there are other things you'd like to know!
Thursday, October 4, 2012
Meet Leah's Team
Today’s topic is introducing you to the team of doctors who helps us care for Leah. We are extremely fortunate to have such amazing doctors, nurses, professionals here in Minneapolis.
Hospital Campus: We go to Children’s Hospital of Minnesota for Leah’s care. When we go for her regular day of appointments, we start out at the hospital in the Radiology department. This is where she gets her head ultrasounds, and where the MRI and/or CT-scans will be. The hospital is just a few miles south of downtown in Minneapolis and takes us about 25-30 minutes to get there from our house. It’s in the middle of an urban neighborhood. If you recall, Leah was born at Abbott Northwestern, which is several blocks from Children’s and connected by an underground tunnel. In between the 2 hospitals are many medical buildings on a large medical campus.
Team Neuro: Dr. Nagib is our neurosurgeon. He is the one who performed Leah’s back surgery and placed her shunt. He also consults with us when we are concerned with her shunt and it’s ultimately his decision on whether we do a shunt surgery. His nurse practitioner is Pete, who we see for Leah’s regular neuro visits. When we have head ultrasounds, we then follow up with Pete, and only sometimes get to see Dr. Nagib. Pete reviews the results of the ultrasound with us and if he’s concerned, he’ll consult with Nagib. Pete sees a lot of other SB kids too, so he is very familiar with SB. The neuro team offices in a building right across the street from Children’s Hospital so we can just walk there after we have our ultrasounds.
Team Spina Bifida: Dr. Marker is our primary SB doctor. He has been a doctor for a looooong time, and his specialty is actually infectious disease. He got involved with SB because many of the conditions that come from having SB are treating and preventing infections – bladder, UTI, shunt – so his background fits very well. Dr. Marker is an old-school doctor, so he is on call 24/7 and will return our calls within minutes of having him paged. He and our neuro team consult with each other on their patients, so Marker and the neuro team of Pete and Nagib are fully aware of everything going on with Leah. Dr. Marker’s regular office is about 20 blocks from the hospital, so we drive there after meeting with the neuro team. He does have SB clinic on Tuesdays in a medical building next to Children’s, so we walk back across the street to see him when we go on Tuesdays.
Dr. Glasser is another doctor on team SB. He is the nephrologist, which is a doctor of the kidney and bladder. His primary concern with Leah today is keeping her kidneys healthy. We don’t always see Dr. Glasser, just after Leah has had any kind of renal ultrasound or bladder study, which is typically done every 2-3 visits. Once she gets to the age when we want to put together a bathroom management program, we’ll see him more often.
Dr. Privila is Leah’s eye doctor, who she sees twice a year. His main focus is to make sure her eyes stay healthy and don’t have any residual damage from her hydrocephalus.
Leah also has to see a regular pediatrician to make sure her immunizations are up to date and that she is meeting her development milestones, just like any regular child. Dr. Benson is her pediatrician, and though he’s not totally familiar with SB, he was strongly recommended to us by our NICU doctor when Leah was first born. She sees him for all of her well-baby check-ups.
Those are all the doctors she sees today. As she gets older, she'll start seeing a rehabilitation doctor, who will help Leah with her mobility, whether that's getting braces on her legs or in a stander. We could also see an orthopedic surgeon if she needs to have surgery on her legs. She also will need to see a urologist if there are surgeries she'll need for her bathroom management program. Those are things that are a few years away, though.
Monday, October 1, 2012
Welcome to SB Awareness Month
Wow, is it really October? That's means it's Spina Bifida Awareness month! I'm excited to share lots of information about SB, but if there's something you want me to feature, there's still time to ask your questions.
The first post today is to share an initiative that the SB mom's group is starting. Many of us who receive the diagonis of SB are told that our babies are going to be severely disabled, may have cognitive learning challenges, will never walk, and will have no quality of life. A lot of us are encouraged to terminate our pregnancies, and are given a very worst case scenario of what our babies' lives will be like. I remember last year around this time I was on the SB mom's group online and one mom had just received the diagnosis at 22 weeks. Her doctors gave her and her husband a very grim outlook and they decided to terminate. Sadly she found our group too late and didn't realize before making their decision that SB is NOT a terrible diagnosis and can absolutely be managed with the right care.
So this month we're trying to share accurate, up-to-date information about Spina Bifida with obstetricians, perinatologists, maternal-fetal specialists, geneticists, and others responsible for delivering the Spina Bifida diagnosis to expectant parents.
One of our amazing moms has created 2 guides to share with the medical community. The first is a guide for medical professionals who deliver the diagnosis to parents: http://www.spinabifidaassociation.org/atf/cf/%7B85f88192-26e1-421e-9e30-4c0ea744a7f0%7D/A%20GUIDE%20FOR%20MEDICAL%20PROFESSIONALS.PDF
The second is a guide to those expectant parents: http://www.spinabifidaassociation.org/atf/cf/%7B85f88192-26e1-421e-9e30-4c0ea744a7f0%7D/EXPECTANT%20%20PARENTS%20GUIDE%20TO%20SPINA%20BIFIDA.PDF
If you'd like to help, you can print out these info sheets and send to your OB/GYN. If you have an appointment with an OB/GYN or maternal fetal medicine specialist or know a hospital social worker, please consider giving this to them.
You can also join the Facebook event: https://www.facebook.com/#!/events/342153912543118/
Yes, getting a Spina Bifida diagnosis is devastating. But it's not the end of the world. I can't imagine my life without Leah and how much joy she brings to us. It breaks my heart thinking that some babies never make into the world because their parents get incorrect or outdated information.
Just look at this face. Does this look like a baby who wouldn't bring immeasurable joy to this world?
The first post today is to share an initiative that the SB mom's group is starting. Many of us who receive the diagonis of SB are told that our babies are going to be severely disabled, may have cognitive learning challenges, will never walk, and will have no quality of life. A lot of us are encouraged to terminate our pregnancies, and are given a very worst case scenario of what our babies' lives will be like. I remember last year around this time I was on the SB mom's group online and one mom had just received the diagnosis at 22 weeks. Her doctors gave her and her husband a very grim outlook and they decided to terminate. Sadly she found our group too late and didn't realize before making their decision that SB is NOT a terrible diagnosis and can absolutely be managed with the right care.
So this month we're trying to share accurate, up-to-date information about Spina Bifida with obstetricians, perinatologists, maternal-fetal specialists, geneticists, and others responsible for delivering the Spina Bifida diagnosis to expectant parents.
One of our amazing moms has created 2 guides to share with the medical community. The first is a guide for medical professionals who deliver the diagnosis to parents: http://www.spinabifidaassociation.org/atf/cf/%7B85f88192-26e1-421e-9e30-4c0ea744a7f0%7D/A%20GUIDE%20FOR%20MEDICAL%20PROFESSIONALS.PDF
The second is a guide to those expectant parents: http://www.spinabifidaassociation.org/atf/cf/%7B85f88192-26e1-421e-9e30-4c0ea744a7f0%7D/EXPECTANT%20%20PARENTS%20GUIDE%20TO%20SPINA%20BIFIDA.PDF
If you'd like to help, you can print out these info sheets and send to your OB/GYN. If you have an appointment with an OB/GYN or maternal fetal medicine specialist or know a hospital social worker, please consider giving this to them.
You can also join the Facebook event: https://www.facebook.com/#!/events/342153912543118/
Yes, getting a Spina Bifida diagnosis is devastating. But it's not the end of the world. I can't imagine my life without Leah and how much joy she brings to us. It breaks my heart thinking that some babies never make into the world because their parents get incorrect or outdated information.
Just look at this face. Does this look like a baby who wouldn't bring immeasurable joy to this world?
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