September is here, which means that in Minnesota, summer is over. School is back, and our days of seeing mid-80s are pretty few and far between. Speaking of school, Leah's daycare was closed last week as they transitioned classrooms for the new summer schedule, so she was home all week. It was a great reminder that I am meant to be a working mom and she was meant to be a daycare kid. She was home each day with someone new, so there were a lot of people to entertain her, but still, she was home. Not with kids and friends and structure that school provides, and that she loves. We have had a few challenging moments with her these last few days. She's sometimes uncooperative, like not putting her toys away or refusing to do things we ask. She's also channeling her teenage self with the looks she gives us, is this what I get to look forward to in 10 years? Yikes! But, it reminds me of how lucky we are that she's a pretty good kid most of the time. I know the little outbursts are because she's probably bored! Back at it on Tuesday.
A few weekends ago we had the annual Spina Bifida walk-run-roll. I just love going each year to catch up with our friends and see all the newest gear that everyone has. Like last year, we hung back and didn't do the 3-mile course, instead spending the time on the playground and talking with other families. The topic of Leah's wheelchair came up again. She tried another boy's chair, which is a big bigger and a lot lighter, so she was able to move around much easier. We'll be trying to get her into something better again this fall. Typically a wheelchair is meant to be used for 5 years, so Leah's current chair is supposed to be with her until kindergarten. But that's 2 years away! I can understand how that would be the case for teens or adults who are done growing, but Leah needs something that she can move much easier and puts her closer to the height of her peers. Last year all we got approved for was modifications to her chair. Hopefully this year we will be able to get one to better fit her needs.
After the event, we had another family over for lunch. Their little boy is 4 and goes to Leah's school a few days a month. He and Leah have become buddies and he even calls Leah his girlfriend! He uses walking sticks, which Leah wanted to try out. She did pretty well with them, and got right back up after a few falls. She's said before that she wants to walk with sticks so maybe that's in our future too? If she wants it, we'll do whatever we can to get her there. I think maybe getting back into PT this fall is going to be in order. For now, we'll be enjoying our last weekend of summer!
Saturday, September 5, 2015
Saturday, August 1, 2015
How I Really Feel
Here is where it gets real, folks. I usually try to be very positive and share the good stuff. Most of the time I actually do feel that things are going really well, but at the same time I cannot ignore the fact that Spina Bifida is a huge, giant, monstrous pain in the a$$.
There are days, when it's hard. I can't stand that Leah's mobility is limited to wheels. I wish she could run around with the neighbor girls down the street. I wish she was able to get out of the stroller and walk down the sidewalk. I wish we didn't have to think and plan out all the different pieces of equipment we'll need when we go anywhere. I wish she could run into her room to get the stuffed animal she wants. It's hard watching her watch from the sidelines. Even when she's in her wheelchair or walking, she's slower than everyone else. It is a challenge trying to pay for something when I have her on my hip while I balance my wallet and sign the credit card receipt. Getting her out of a swimming pool or lake more often than not means leaves me with a huge wet spot on my clothes and soaked shoes. We end up being an extension of her and she relies on us a lot for her mobility. I am comfortable with doing that for her, most of the time, but there will come a time when she doesn't want that anymore.
It wasn't that big of a deal when she was first born, or even last year because she was still content with being carried around. Now she wants to do everything herself... which I love!! And it makes me so darn frustrated. The other day we went running errands, and she didn't want to be stuck in the shopping cart. But it was just me and I didn't have enough hands to direct her wheelchair and carry 2 boxes of diapers, so she was confined to the cart.
My head knows that life in wheels can still be very fulfilling. One doesn't need functioning legs to get into Harvard. All these mobility challenges can be managed... and most of the time I think we do a pretty good job of it. We try to give her as much mobility as we can, and allow her the freedom to be as independent as is possible for a 3-year old. But deep down in my heart I am scared and sad to think that she won't be treated right just because of her wheelchair. That she will be perceived as less than she is because her legs don't work, even though the rest of her works incredibly well. Spend 5 minutes with her and even at her most challenging, she is still a kind, sweet and sensitive girl. She has an inquisitive mind, she is outgoing and wants to know everyone's name. My little 3-year old plays the role of a campaigning politician extremely well - saying hello, kissing babies, waving - but the best part is that it is truly genuine. How many people are going to miss out on that because all they see are wheels? How long until she starts seeing the differences that others see, before she starts believing she's less of a person, and before that sparkle starts to fade? I know I am biased because I'm her mom... but I assure you that she is something special. She has a gift, there is a little gem sleeping down the hall, and I can only hope and pray that she is treated properly by others so that she continues to shine. She can light up an entire room today. Will she still be able to do that 10, 15, 20 years from now?
As she grows from 3 to 4 and starts to become more aware of herself and others around her, I know she will start to see the differences. She already knows that the other kids at school use the potty while she is still in diapers. It hasn't seemed to bother her yet. I am more afraid of those questions - why am I different? - than I am of having "the talk" with her (you know, the one about the birds and the bees). I just hope I can do her justice when that time comes. And hope that every day I can keep that spark alive. Did I mention that she's something special.. and not because she's "special". There is truly magic at work in that little 25-lb body of hers.
There are days, when it's hard. I can't stand that Leah's mobility is limited to wheels. I wish she could run around with the neighbor girls down the street. I wish she was able to get out of the stroller and walk down the sidewalk. I wish we didn't have to think and plan out all the different pieces of equipment we'll need when we go anywhere. I wish she could run into her room to get the stuffed animal she wants. It's hard watching her watch from the sidelines. Even when she's in her wheelchair or walking, she's slower than everyone else. It is a challenge trying to pay for something when I have her on my hip while I balance my wallet and sign the credit card receipt. Getting her out of a swimming pool or lake more often than not means leaves me with a huge wet spot on my clothes and soaked shoes. We end up being an extension of her and she relies on us a lot for her mobility. I am comfortable with doing that for her, most of the time, but there will come a time when she doesn't want that anymore.
It wasn't that big of a deal when she was first born, or even last year because she was still content with being carried around. Now she wants to do everything herself... which I love!! And it makes me so darn frustrated. The other day we went running errands, and she didn't want to be stuck in the shopping cart. But it was just me and I didn't have enough hands to direct her wheelchair and carry 2 boxes of diapers, so she was confined to the cart.
My head knows that life in wheels can still be very fulfilling. One doesn't need functioning legs to get into Harvard. All these mobility challenges can be managed... and most of the time I think we do a pretty good job of it. We try to give her as much mobility as we can, and allow her the freedom to be as independent as is possible for a 3-year old. But deep down in my heart I am scared and sad to think that she won't be treated right just because of her wheelchair. That she will be perceived as less than she is because her legs don't work, even though the rest of her works incredibly well. Spend 5 minutes with her and even at her most challenging, she is still a kind, sweet and sensitive girl. She has an inquisitive mind, she is outgoing and wants to know everyone's name. My little 3-year old plays the role of a campaigning politician extremely well - saying hello, kissing babies, waving - but the best part is that it is truly genuine. How many people are going to miss out on that because all they see are wheels? How long until she starts seeing the differences that others see, before she starts believing she's less of a person, and before that sparkle starts to fade? I know I am biased because I'm her mom... but I assure you that she is something special. She has a gift, there is a little gem sleeping down the hall, and I can only hope and pray that she is treated properly by others so that she continues to shine. She can light up an entire room today. Will she still be able to do that 10, 15, 20 years from now?
As she grows from 3 to 4 and starts to become more aware of herself and others around her, I know she will start to see the differences. She already knows that the other kids at school use the potty while she is still in diapers. It hasn't seemed to bother her yet. I am more afraid of those questions - why am I different? - than I am of having "the talk" with her (you know, the one about the birds and the bees). I just hope I can do her justice when that time comes. And hope that every day I can keep that spark alive. Did I mention that she's something special.. and not because she's "special". There is truly magic at work in that little 25-lb body of hers.
Wednesday, July 29, 2015
Why We Do This
Leah has been in the news a lot over the last couple months, and a couple organizations have used her and our story in different ways... galas, newsletters, local newspaper and other fund-raising activities. We have always been very open about sharing our story, but I'm a relatively private person and sometimes have heartburn with putting ourselves out there so much. Just recently, I heard a story that reminded me why I do this. In the end, it's to make connections and help other families like ours find the support they need.
One of the galas we were featured in this spring was for her daycare. As a side note, I'm very overly cautious not to mention the name of her daycare because this blog is public and I'm a little paranoid about having strangers know where she goes to school. It's why I haven't shared much about our work with them. They had us in a video talking about why we love it there and why it's been such a blessing to our family. We didn't know it at the time, but there was someone there who was introduced to this organization for the first time. Her fiancé's son is 4 and has spina bifida, too, and he splits his time between South Dakota and Minneapolis. In our story, we talked about Leah's spina bifida, and how she is accepted for who she is. This woman immediately contacted our daycare, and they've since accommodated her little boy's schedule for him to come just a few days a month when he's here in town. All because we were open to sharing about the road we traveled, we were able to help another family. Bennett and Leah now play together when he's at school, and she even wants to walk like he does, with walking sticks! It's also nice for Leah to see another boy at school who's just like she is. Sometimes things work out so well!
One of the galas we were featured in this spring was for her daycare. As a side note, I'm very overly cautious not to mention the name of her daycare because this blog is public and I'm a little paranoid about having strangers know where she goes to school. It's why I haven't shared much about our work with them. They had us in a video talking about why we love it there and why it's been such a blessing to our family. We didn't know it at the time, but there was someone there who was introduced to this organization for the first time. Her fiancé's son is 4 and has spina bifida, too, and he splits his time between South Dakota and Minneapolis. In our story, we talked about Leah's spina bifida, and how she is accepted for who she is. This woman immediately contacted our daycare, and they've since accommodated her little boy's schedule for him to come just a few days a month when he's here in town. All because we were open to sharing about the road we traveled, we were able to help another family. Bennett and Leah now play together when he's at school, and she even wants to walk like he does, with walking sticks! It's also nice for Leah to see another boy at school who's just like she is. Sometimes things work out so well!
Sunday, July 19, 2015
Top Doctor is Our Doctor
Leah and I were in the grocery store the other day when we saw a familiar face in the check-out line. On the front page of the Minneapolis-St. Paul magazine was Dr. Nagib! Hurray!! I asked Leah if she knew who that was... she didn't, which is actually not a bad thing. Not seeing him is good. I told her that was Dr. Nagib, and she got really excited and said, "That's my doctor!" Of course, I had to buy the magazine. He was named one of the cities' top doctors, one of 6 who were featured in the article... and the only one on the cover. How fortunate that he's ours!
Here's a link to the full article: Minneapolis-St. Paul Top Doctors
He literally knows the inside of Leah's brain. He's done 3 surgeries on her - the first was to close her back, the next 2 were to place and replace her shunt, almost exactly a year apart.
It's yet another reminder that this is where we're supposed to be. As often as I pray for Leah, I also pray for her doctors. I feel so fortunate that the few times she's been in surgery, and any future surgeries she may have, the absolute best hands are working on her.
Here's a link to the full article: Minneapolis-St. Paul Top Doctors
He literally knows the inside of Leah's brain. He's done 3 surgeries on her - the first was to close her back, the next 2 were to place and replace her shunt, almost exactly a year apart.
It's yet another reminder that this is where we're supposed to be. As often as I pray for Leah, I also pray for her doctors. I feel so fortunate that the few times she's been in surgery, and any future surgeries she may have, the absolute best hands are working on her.
Wednesday, July 15, 2015
Health Update
We actually have been a bit quiet in all things health-related, thank goodness. Leah had her annual neurosurgical visit and twice-a-year Spina Bifida clinic appointment last month. As usual, we started out in Radiology at Minneapolis Children's Hospital. She had a rapid MRI scan, which takes a looks at her brain ventricles to ensure they're still within the range we'd like to see. It also shows her chiari malformation, that pesky little abnormality of her cerebellum. The good things about the rapid MRI is that it goes fast and she doesn't need to be sedated for it. The bad news is that she has to be totally straight-jacketed, in a loud machine where she can only see me through a little mirror, for 5 whole minutes. She's still talking about how she was very upset being put into the machine. The second test we did in Radiology was an X-ray of the shunt and tubing, which shows us where the shunt is so we make sure the tubing is still winding free down her neck and into her abdomen. The MRI is a magnet, which could possible reset her shunt, so they also take a picture of the shunt valve setting.
Following Radiology, we headed over to see Pete and take a look at the results. All good! The ventricles looked great, almost normal. And not just Leah-normal, but regular non-hydro normal. Her chiari is still there, and still big, but for the moment is not causing any issues. Leah was her typical charming self with Pete, and he thought that overall she's in really good shape! We'll see him again next year! We went directly to Dr. Marker's office, and he was similarly pleased with how she's doing.
We had made a change with the rest of her care and moved from Children's to Gillette. While we absolutely love Dr. Nagib and Pete for neuro and Dr. Marker for general SB, we had not been happy with the physical rehab specialist or urology doctor at Children's. After hearing a lot of great things from other families about Gillette, we decided to make the change this spring. Last year I moved her Physical Therapy to Gillette and was so much happier with the level of care that we received, so I was optimistic about the Spina Bifida clinic there.
Gillette's SB clinic is fairly new, only about a year old, but a lot of families had been migrating to them recently. They also got some of the "kinks" out and we had a great experience. Clinic at Children's and Gillette is basically the same process, and in both places they make it a one-stop shop for all the SB specialists. They work together to discuss the best plan for the patient, and also make us only come in once to see everyone. Right away, I liked Gillette, though they were running quite a bit behind. The first specialist was a rehab doctor, who wanted to know all about Leah's health history and checked out her legs and body. This doctor was a young-ish lady. Then about 5 young-ish (I'm talking 30's) female doctors came in to talk more thoroughly about her legs, walking, and everything physical. As a mom to a young daughter, I really liked seeing these girls, as I believe having strong female role models are great for Leah. I met the chief neurosurgeon, who's also the director of the SB program, and talked with him while Leah had some hip x-rays done. He was ok, but I definitely like Dr. Nagib better. This doctor didn't give me a vote of confidence when I asked him if he was as good as Dr. Nagib.
Her hip x-ray showed that both hips are still in their sockets. Hip dislocation is very common in SB, and the bones can eventually find a new socket farther up the pelvis. It's only a problem when the hips become uneven, which causes pain and scoliosis from the leaning. Doctors used to do surgery to replace the hips, but the recovery was long and painful, and the hips would often fall back out of joint quickly. Unless it's a problem, they'll leave them as they are. Luckily, that's not a problem for her now but we will keep watching them closely.
Finally, we met with the urology doctor. I really, really liked him! His approach, his philosophy and general demeanor. He told us his rules: he is in charge of her health; we are in charge of her social life. He will defer to social life until health is compromised, which I really appreciate. Right now, Leah is not cathed or on any kind of bathroom program. I asked about it because she's 3 1/2 and starting to notice that she's one of the only ones still in diapers. He asked me about UTI's, and whether she suffers constipation or other issues. Our answer is that diapers are working just fine for her, and his response was that he can't offer us any other options that will make our lives easier right now. She will need to be continent for kindergarten, which is 2 years away, so we'll wait another year before starting down that road. For now, we keep doing what we're doing, as her health is good.
Our first Gillette SB experience was a positive one. We will go back in 6 more months, where they will do some more tests on her kidneys and bladder as we move towards a bathroom program. They also recommended we start Physical Therapy back up. She's starting to slow down on the walking, preferring the wheelchair a little more often at school. Could that be a typical 3-year old thing, or is she done with it? She has a friend at school who uses walking sticks, and talks about wanting to walk like Bennett... maybe she needs more of a challenge. We also want her to start learning how to get in and out of her wheelchair and onto the couch.
Whew! That was a long update to say that she's doing great!
Following Radiology, we headed over to see Pete and take a look at the results. All good! The ventricles looked great, almost normal. And not just Leah-normal, but regular non-hydro normal. Her chiari is still there, and still big, but for the moment is not causing any issues. Leah was her typical charming self with Pete, and he thought that overall she's in really good shape! We'll see him again next year! We went directly to Dr. Marker's office, and he was similarly pleased with how she's doing.
We had made a change with the rest of her care and moved from Children's to Gillette. While we absolutely love Dr. Nagib and Pete for neuro and Dr. Marker for general SB, we had not been happy with the physical rehab specialist or urology doctor at Children's. After hearing a lot of great things from other families about Gillette, we decided to make the change this spring. Last year I moved her Physical Therapy to Gillette and was so much happier with the level of care that we received, so I was optimistic about the Spina Bifida clinic there.
Gillette's SB clinic is fairly new, only about a year old, but a lot of families had been migrating to them recently. They also got some of the "kinks" out and we had a great experience. Clinic at Children's and Gillette is basically the same process, and in both places they make it a one-stop shop for all the SB specialists. They work together to discuss the best plan for the patient, and also make us only come in once to see everyone. Right away, I liked Gillette, though they were running quite a bit behind. The first specialist was a rehab doctor, who wanted to know all about Leah's health history and checked out her legs and body. This doctor was a young-ish lady. Then about 5 young-ish (I'm talking 30's) female doctors came in to talk more thoroughly about her legs, walking, and everything physical. As a mom to a young daughter, I really liked seeing these girls, as I believe having strong female role models are great for Leah. I met the chief neurosurgeon, who's also the director of the SB program, and talked with him while Leah had some hip x-rays done. He was ok, but I definitely like Dr. Nagib better. This doctor didn't give me a vote of confidence when I asked him if he was as good as Dr. Nagib.
Her hip x-ray showed that both hips are still in their sockets. Hip dislocation is very common in SB, and the bones can eventually find a new socket farther up the pelvis. It's only a problem when the hips become uneven, which causes pain and scoliosis from the leaning. Doctors used to do surgery to replace the hips, but the recovery was long and painful, and the hips would often fall back out of joint quickly. Unless it's a problem, they'll leave them as they are. Luckily, that's not a problem for her now but we will keep watching them closely.
Finally, we met with the urology doctor. I really, really liked him! His approach, his philosophy and general demeanor. He told us his rules: he is in charge of her health; we are in charge of her social life. He will defer to social life until health is compromised, which I really appreciate. Right now, Leah is not cathed or on any kind of bathroom program. I asked about it because she's 3 1/2 and starting to notice that she's one of the only ones still in diapers. He asked me about UTI's, and whether she suffers constipation or other issues. Our answer is that diapers are working just fine for her, and his response was that he can't offer us any other options that will make our lives easier right now. She will need to be continent for kindergarten, which is 2 years away, so we'll wait another year before starting down that road. For now, we keep doing what we're doing, as her health is good.
Our first Gillette SB experience was a positive one. We will go back in 6 more months, where they will do some more tests on her kidneys and bladder as we move towards a bathroom program. They also recommended we start Physical Therapy back up. She's starting to slow down on the walking, preferring the wheelchair a little more often at school. Could that be a typical 3-year old thing, or is she done with it? She has a friend at school who uses walking sticks, and talks about wanting to walk like Bennett... maybe she needs more of a challenge. We also want her to start learning how to get in and out of her wheelchair and onto the couch.
Whew! That was a long update to say that she's doing great!
Sunday, July 12, 2015
The Anniversary
It's been 4 years now that we got Leah's diagnosis. That means that it's been 4 years since my life felt normal. I've been trying to think about what was going on during those last few days before our lives changed. I was starting to put thing on a baby registry, researching brands of car seats, and bookmarking some of my favorite bedding items. None of it had anything to do with Spina Bifida. The night before, I was excited to see her on the ultrasound in the morning. Since I was close to 20 weeks, it had been a while since I'd seen the baby. I think the last ultrasound was at 9 weeks so I was looking forward to seeing how much more baby had grown. Nothing, though, could have prepared us for what was to come.
Four years later, we are definitely in a better place that we were. I wish I could have had a peek into this 4 years ago to make me realize that we would be okay. I follow several blogs with other kids with a variety of special needs. One mom wrote this the other day, and I found it to be incredibly powerful and really resonated with me:
I know that she’s going to be fine. This is her life, it will always be her life and she won’t know any different. I am the one who has to come to terms with her life being different than how I imagined it. That being said, if Spina Bifida comes with her, then I’ll take it because I want all of her. It's taken me a long time to believe that. There are still days when I wish SB away, but I banish those thoughts quickly because it would change Leah. And I love her just the way she is.
It was a rough few days following the diagnosis, by far the hardest of our lives. For 5 days, we met with doctors, researched Spina Bifida, and figured out how our life would be different. The most overwhelming part of the whole process was finding out about everything that could possibly go wrong, be different, happen to her during her whole life. All worst case scenarios. It wasn't until we started talking to other families that we got a much clearer picture of what is more likely going to be our reality. I suppose doctors and specialists have to tell us every single thing that we could encounter, but they make it seem so bleak. In reality, our life is nothing but bleak. It's joyful, happy, satisfying, and enjoyable.
Four years later, we are definitely in a better place that we were. I wish I could have had a peek into this 4 years ago to make me realize that we would be okay. I follow several blogs with other kids with a variety of special needs. One mom wrote this the other day, and I found it to be incredibly powerful and really resonated with me:
The thing about time is that sometimes the joy and bliss of the present can actually reach back in time and almost change the events of the past. Now when I recall that terrible day I think, “It was just her. Our sweet, spunky, amazing little girl. It was her all along.” And now I wouldn’t change a thing.Wow! Yes, yes all of that. Thank you for putting into words exactly how I feel about that day, that feels so long ago but also like it was yesterday.
I know that she’s going to be fine. This is her life, it will always be her life and she won’t know any different. I am the one who has to come to terms with her life being different than how I imagined it. That being said, if Spina Bifida comes with her, then I’ll take it because I want all of her. It's taken me a long time to believe that. There are still days when I wish SB away, but I banish those thoughts quickly because it would change Leah. And I love her just the way she is.
Thursday, June 11, 2015
My Big Kid
Everyday she's becoming more and more like a big girl, and less and less like a baby. I can't believe my eyes sometimes, or my ears. Am I raising a teenage boy? I thought having a girl meant that I didn't have to hear the potty talk, but this girl thinks it's absolutely hilarious. Potty talk aside, I so love being able to have a real conversation with her, and she can remember things that happened a few days or week ago. She's also able to tell me some of the things she does during the day at school. And starting to make up things... I'm pretty sure she didn't fall down the stairs or fly to California that day.
Turning 3 has also brought on a bit of anxiety. She's always been a worry-wart but it's become more exaggerated as of late. A lack of mobility doesn't help either. She has a hard time being in a room by herself, so we pay a lot of attention to her. We've been trying to get her more comfortable spending time playing alone for a few minutes, walking out of the room briefly and encouraging her to be independent. It has its ups and downs; she can do a few minutes at a time. I'll be honest, Ty is better at it than I am. I think I'm a little too nice and give in too much, and I need to let her fuss a bit more. Easier said than done.
My big girl also moved up to a big girl room at school this week. The nice thing is that her class went together, so all of her friends made the move with her. They had visited the new room a few times to meet the teachers and get familiar with the room. Our first week went pretty well, and she settled into the new room very well. Moving upstairs has been a little bit more of a challenge logistically. Her old room was on the first floor but now we have to get into the elevator to go upstairs. It takes a little bit longer to drop off and pick up, and isn't as conducive to making multiple trips to the car with her equipment. We are all getting used to a new routine.
Even though she's a big kid, she wants to know all about when she was a baby. Her favorite thing is asking us to tell us a story about being a baby. We tell her how tiny she was, and what a sweet baby she was. She was so happy and laughed a lot and only cried a little bit. She gets such a kick of out it, and it's fun telling her all about how she was a sweet little baby. She's still as sweet!
Turning 3 has also brought on a bit of anxiety. She's always been a worry-wart but it's become more exaggerated as of late. A lack of mobility doesn't help either. She has a hard time being in a room by herself, so we pay a lot of attention to her. We've been trying to get her more comfortable spending time playing alone for a few minutes, walking out of the room briefly and encouraging her to be independent. It has its ups and downs; she can do a few minutes at a time. I'll be honest, Ty is better at it than I am. I think I'm a little too nice and give in too much, and I need to let her fuss a bit more. Easier said than done.
My big girl also moved up to a big girl room at school this week. The nice thing is that her class went together, so all of her friends made the move with her. They had visited the new room a few times to meet the teachers and get familiar with the room. Our first week went pretty well, and she settled into the new room very well. Moving upstairs has been a little bit more of a challenge logistically. Her old room was on the first floor but now we have to get into the elevator to go upstairs. It takes a little bit longer to drop off and pick up, and isn't as conducive to making multiple trips to the car with her equipment. We are all getting used to a new routine.
Even though she's a big kid, she wants to know all about when she was a baby. Her favorite thing is asking us to tell us a story about being a baby. We tell her how tiny she was, and what a sweet baby she was. She was so happy and laughed a lot and only cried a little bit. She gets such a kick of out it, and it's fun telling her all about how she was a sweet little baby. She's still as sweet!
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