A few weeks ago, Leah and I took a little trip. Traveling with a 3-year old who has a wheelchair and is starting to walk more often posed a challenge. How in the world am I going to schlep all her crap through the airport? This trip had been planned for a long time. Several months ago, I bought plane tickets for Leah and I to visit 2 new baby girls who would be joining the family this spring. When Leah started walking, I knew she'd want to bring her braces and walker to play with her cousins. I asked her if she'd rather have her walking stuff or her zip-zac, she chose walker. Ok, I can do this, right?
This was just a solo trip with Leah and I. I knew I wanted to have only carry-ons, as my hometown airport is slow at baggage claims, and we'd be getting in late. I'm also stubborn and hate checking bags, unless absolutely necessary. So after much thinking and staring at everything, I figured out a way that I could handle everything on my own. Ty was able to get a gate pass and help me through the Minneapolis airport; my dad got one when we landed, but I didn't want to rely on someone else to help me in case I had to do it on my own.
We were going to be gone for 3 full days, 4 nights, so I needed a full suitcase, and I also brought a backpack. Leah had her wheelchair, plus the little backpack on the chair, so I was able to push her through the airport. I strapped her braces to the front of my rollerbag and slid the walker over the handle on the suitcase. Voila! It worked. Well, until I had to get on the plane. Then I'll be honest, I was a bit of a sh*tshow. Ty got me through the Minneapolis airport, which is quite big, to our gate. When we checked in, we had requested a wheelchair assist at the gate. The guy was a bit surprised... well, actually kind of shocked, to see a little 3-year old girl. He was nice enough, though, and used the wheelchair to help me get some of my bags down the jet bridge to the plane.
The thing I wasn't quite prepared for was how much crap I actually had to carry ON the plane, and I had to do that all by myself. Seriously, why can't parents of special need kids automatically grow 3 extra arms? I left the wheelchair and walker and my rollerbag at the gate-side check on the jet bridge. Thank god for that gate-side check, I couldn't have handled bringing on my damn rollerbag as well. I didn't trust them with her braces, so I wanted to bring those on the plane, which I also had to do with the stick handle for the chair. A backpack on my bag, and another that I had to carry, and oh sh*t! I have to carry my child on the airplane too, because of course she can't walk... that's why I need all this crap. Where are my extra arms when I need them? I was a walking circus. But I'll be damned if I didn't get everything on the plane, and more miraculously, everything OFF the plane in 1 piece. It was all worth it when I saw her running around the house with her "brothers." Totally 100% worth it.
Thursday, April 23, 2015
Sunday, April 19, 2015
Benched
Well, we have had our first set-back in our walking situation. A little over a week ago, her teachers at daycare alerted me to a funny bump on her right foot. It did look a little odd, just on the outside of the foot, on the bone. We got in the next day to see Dr. Marker. He had a couple X-rays taken, which thankfully showed that her foot wasn't broken, but sadly, he thought it was from her foot rubbing on her braces. He ordered her off the braces until we could get fitted for new ones. NOOOOOO!! The process to get new braces is long and kind of a pain in the you-know-what. I was pretty frustrated and sad. This meant that she couldn't do any walking at school or at home. Just when she was getting so good too!
I can understand how this happened. She went from spending very little time standing up to being in it for hours each day. It's her primary and preferred way of getting around at school, and she loves walking at home. Just the weekend before, she had been running around the backyard for 2 hours. So, we followed the doctor's orders and kept her out of the braces. Instead, she wheeled at school, which wasn't ideal, for either of us. Wheeling isn't as fun, nor is it as tiring.
Getting new braces is a long affair. First we have to get an appointment, then they have to cast the mold, make the braces, and we have to have them fitted and adjusted. That adjustment alone is 3-4 hours, on top of the month plus that it took to make them. We'd be looking at mid-May to get something new. So, we've improvised a bit. Ty was able to bend the foot brace out slightly to take pressure off the foot, and I got athletic tape to wrap her foot. We are also limiting her time in the braces, and only having her in them at home so we can closely monitor her feet. It's not ideal, but for a little girl who constantly wants to walk, it's what we felt was right.
It's again another reminder of the constant vigilance over her legs and feet, and how we're different. But Dr. Marker told us that feet sores is a big reason older kids wind up in the hospital. They don't pay attention to their feet and legs, and things like this get left unnoticed. A good reminder to us to practice good maintenance. Luckily, her feet don't have sores or blisters, but this little bump is a little concerning. It's going down, which makes me think that it probably does have something to do with her braces. For now, we'll keep watching, and trying to figure out the best balance between keeping her healthy while still promoting independence and pushing ahead in her walking journey. In the grand scheme of things, though, this is a small step back. Lots and lots of steps ahead in the last 2 months to still make us very proud.
I can understand how this happened. She went from spending very little time standing up to being in it for hours each day. It's her primary and preferred way of getting around at school, and she loves walking at home. Just the weekend before, she had been running around the backyard for 2 hours. So, we followed the doctor's orders and kept her out of the braces. Instead, she wheeled at school, which wasn't ideal, for either of us. Wheeling isn't as fun, nor is it as tiring.
Getting new braces is a long affair. First we have to get an appointment, then they have to cast the mold, make the braces, and we have to have them fitted and adjusted. That adjustment alone is 3-4 hours, on top of the month plus that it took to make them. We'd be looking at mid-May to get something new. So, we've improvised a bit. Ty was able to bend the foot brace out slightly to take pressure off the foot, and I got athletic tape to wrap her foot. We are also limiting her time in the braces, and only having her in them at home so we can closely monitor her feet. It's not ideal, but for a little girl who constantly wants to walk, it's what we felt was right.
It's again another reminder of the constant vigilance over her legs and feet, and how we're different. But Dr. Marker told us that feet sores is a big reason older kids wind up in the hospital. They don't pay attention to their feet and legs, and things like this get left unnoticed. A good reminder to us to practice good maintenance. Luckily, her feet don't have sores or blisters, but this little bump is a little concerning. It's going down, which makes me think that it probably does have something to do with her braces. For now, we'll keep watching, and trying to figure out the best balance between keeping her healthy while still promoting independence and pushing ahead in her walking journey. In the grand scheme of things, though, this is a small step back. Lots and lots of steps ahead in the last 2 months to still make us very proud.
Friday, April 3, 2015
In The News
Last week some friends of ours were featured on the news here locally. They found out their baby girl would have Spina Bifida in a very similar way we did, and they elected to have fetal surgery. They are a very sweet couple and their darling little girl just turned 1. We were lucky to meet them while they were still deciding whether to have the surgery, and now see them at different SB events. It's neat to see a family we know be featured, and also to see that fetal surgery will soon be offered here in Minnesota.
There are a couple parts to the news story, though, that I have a hard time with. Where it says: "tests revealed the damage on baby's spine was higher than originally thought and could cause brain damage after birth." This was the same diagnosis that we got, and while it sounds scary, this is why she has a shunt. What they should have said was it could cause brain damage after birth... if left untreated! Anyone who spends more than 15 seconds with Leah knows she doesn't have brain damage.
The other thing they said, "A gap in the spinal cord is typically repaired after a baby is born and is followed by a childhood filled with physical therapy." No playing? No friends? Hours and hours of PT. Wow, that sounds pretty awful. Something no kid, or parent would want, right? Not so fast! Leah has been in PT, most kids with SB get some kind of PT on a regular basis, but it's fun! At least Leah's was fun, she was learning through playing and we did additional activities here at home. The only burden on us was making the time to do it.
I get that things need to be sensationalized for the sake of viewership, but it doesn't tell the whole truth. Spina Bifida isn't a terrible, horrible diagnosis. There is still a lot of joy and happiness. Life is slower, maybe, but not worse. That's where I get defensive about SB, when others portray it as a worse-off situation. It's also hard to see this surgery being touted as a life-changing surgery and giving kids better outcomes. It may be life-changing but it's not life-saving, and that's why we didn't do it. Should we have? Would it have made a difference? It's hard not to look back sometimes and wonder.
Either way, fetal surgery or not, kids with Spina Bifida DO have additional physical challenges, but it doesn't mean that their childhood can or shouldn't be any different than "regular" kids. And fetal surgery or not, Leah's life is just as filled with happiness as anyone else's.
Enjoy meeting our friends and fellow SB family!
http://kstp.com/news/stories/S3749222.shtml
There are a couple parts to the news story, though, that I have a hard time with. Where it says: "tests revealed the damage on baby's spine was higher than originally thought and could cause brain damage after birth." This was the same diagnosis that we got, and while it sounds scary, this is why she has a shunt. What they should have said was it could cause brain damage after birth... if left untreated! Anyone who spends more than 15 seconds with Leah knows she doesn't have brain damage.
The other thing they said, "A gap in the spinal cord is typically repaired after a baby is born and is followed by a childhood filled with physical therapy." No playing? No friends? Hours and hours of PT. Wow, that sounds pretty awful. Something no kid, or parent would want, right? Not so fast! Leah has been in PT, most kids with SB get some kind of PT on a regular basis, but it's fun! At least Leah's was fun, she was learning through playing and we did additional activities here at home. The only burden on us was making the time to do it.
I get that things need to be sensationalized for the sake of viewership, but it doesn't tell the whole truth. Spina Bifida isn't a terrible, horrible diagnosis. There is still a lot of joy and happiness. Life is slower, maybe, but not worse. That's where I get defensive about SB, when others portray it as a worse-off situation. It's also hard to see this surgery being touted as a life-changing surgery and giving kids better outcomes. It may be life-changing but it's not life-saving, and that's why we didn't do it. Should we have? Would it have made a difference? It's hard not to look back sometimes and wonder.
Either way, fetal surgery or not, kids with Spina Bifida DO have additional physical challenges, but it doesn't mean that their childhood can or shouldn't be any different than "regular" kids. And fetal surgery or not, Leah's life is just as filled with happiness as anyone else's.
Enjoy meeting our friends and fellow SB family!
http://kstp.com/news/stories/S3749222.shtml
Saturday, February 28, 2015
She's Walking!
All over the place. It's so awesome to see. It's been 3 weeks now that she started and we haven't looked back. There have been a few falls, some near-misses, and several slips, but none of that has set her back. I am so incredibly proud of her spirit and determination, I just can't hardly stand it. It's been so amazing. To think back when we found out she'd have Spina Bifida, and where the lesion was, I never believed that this was possible. It was always a dream, always a hope. To see it happen in person is one of the best feelings.
She had been asking to walk at school, and she's been talking about it with her teachers. Finally on Wednesday I decided to bring it in. I wanted to make sure she was steady enough to have kids running all around her and maneuvering through the classroom. She was so excited!! I showed them how to put on her braces, and she had the biggest smile on her face when I stood her up with her walker. All the teachers were there, and a girl from the office came in to take pictures. It was a pretty special moment. The kids leave the classroom at 8:00 to go to the nearby gym to play for a while, so Leah got a head start walking over there. As we were walking there, I heard a couple of the teachers talking about ways they could slow down the walk to the gym with the rest of the kids so Leah could keep up. Maybe they could tippee-toe or walk backwards so she can be part of the group. Not for every time, but this would keep her with her class. Again, reason #103 that I absolutely love her school.
We have taken a trip to the library in the walker and now to school, but we haven't ventured out other places yet. Logistically, it's a little more difficult. Her braces aren't very comfortable to sit in for long, so I can't put them on her at home. When we did the library, I did and she wore them in the car, but we only live a few blocks away. Still, she complained that they hurt. Once the weather warms up, it will be easier to put them on her when we get somewhere and I can let her walk across the parking lot. It's still quite cold here.
I have added another video to the site. This one is from the very first day walking.
She had been asking to walk at school, and she's been talking about it with her teachers. Finally on Wednesday I decided to bring it in. I wanted to make sure she was steady enough to have kids running all around her and maneuvering through the classroom. She was so excited!! I showed them how to put on her braces, and she had the biggest smile on her face when I stood her up with her walker. All the teachers were there, and a girl from the office came in to take pictures. It was a pretty special moment. The kids leave the classroom at 8:00 to go to the nearby gym to play for a while, so Leah got a head start walking over there. As we were walking there, I heard a couple of the teachers talking about ways they could slow down the walk to the gym with the rest of the kids so Leah could keep up. Maybe they could tippee-toe or walk backwards so she can be part of the group. Not for every time, but this would keep her with her class. Again, reason #103 that I absolutely love her school.
We have taken a trip to the library in the walker and now to school, but we haven't ventured out other places yet. Logistically, it's a little more difficult. Her braces aren't very comfortable to sit in for long, so I can't put them on her at home. When we did the library, I did and she wore them in the car, but we only live a few blocks away. Still, she complained that they hurt. Once the weather warms up, it will be easier to put them on her when we get somewhere and I can let her walk across the parking lot. It's still quite cold here.
I have added another video to the site. This one is from the very first day walking.
Tuesday, February 24, 2015
Video Proof
Leah is getting better and better with her walking. It's all she wants to do, she's so motivated!! It's going so well that I'm taking her braces and walker to her school tomorrow. I'm a little nervous about having her walking around all the other kids because she's sometimes a little unsteady, but I suppose this is the best way for her to learn. I can't wait to hear how the day went.
I've been trying to upload some videos here, but I can't load videos more than a couple seconds long. I'm going to attempt to share a Shutter.fly site where I was able to load videos and a few pictures. On the site, there are 2 videos: the first is from September 2013 when she first got the walker. It's a super cute video where I ask her if she's going to walk someday and she nods. The other is from just the other day. It's amazing how much better she is even since then.
Enjoy!
https://leahmoments.shutterfly.com/pictures
I've been trying to upload some videos here, but I can't load videos more than a couple seconds long. I'm going to attempt to share a Shutter.fly site where I was able to load videos and a few pictures. On the site, there are 2 videos: the first is from September 2013 when she first got the walker. It's a super cute video where I ask her if she's going to walk someday and she nods. The other is from just the other day. It's amazing how much better she is even since then.
Enjoy!
https://leahmoments.shutterfly.com/pictures
Tuesday, February 17, 2015
And Just Like That
Well, friends, we have a walker! Just like that, she went from standing to walking. And by just like that, I mean it took her less than a week to figure it all out. I am completely amazed and can't believe it. With most things, I thought - and usually expected - that she would eventually figure it out. Sitting, rolling, crawling, even wheeling all happened later than I expected, but she still did them. Walking was something I honestly never thought I'd see... not because I didn't think she could do it, but because I couldn't imagine how it would happen.
Leah has absolutely no feeling or movement in her legs, from her hips down to her toes. She needs a lot of help and bracing to stand up. When Leah was 1, she got a stander so we could get her upright. A few months later, we got her into a rolling stander so she could roll while standing up. We also borrowed a walker from friends, and stood her up in her stationary stander while holding onto the walker. I have a video of her doing that; when I asked her if she wants to walk someday, she nodded yes. We kept pushing on, last year getting her braces that went from her hips to her feet. She mainly used them to stand and fall. Falling, not walking.
Just about a month ago, we started doing stander time every night after dinner. For a long time, she's been hit or miss with the rolling stander. She complained a lot about getting in it, though I'm not really sure why, so she hadn't used it must. But recently, by bribing her with chocolate, she's been much more interested in it. She realized that she could reach the drawer with the "Leah bites" and we let her have 1. Then she realized she could reach the light switches in the dining room. That was fun! So finally, after all that... the stander, the walker, the rolling stander, and the falling... she was ready to walk!
It happened so fast. Last Sunday night, Leah was in her braces holding to her walker and doing her falling. I asked her if she could move forward. She kind of hopped. Then she did it again, and all of the sudden, she was hopping a few feet ahead. And again into the kitchen, across the dining room and back. Monday night we did more walking, more on Tuesday. I took her to the library on Friday and she walked for an hour and a half. At first I had to move her walker for her, but now she has that figured out too.
The way she does it is by pushing up on the walker and swinging her body forward. She is a bit of a daredevil and likes leaning really far, so we have to remind her to be careful or she'll fall. It's a slow process right now, just like it was for her to learn, but she's here. She's walking! The other night, she told me she wanted me to chase her around the kitchen. Chase!
This has been an incredible week. Leah has certainly done everything in her own time, and now this opens up the world to her in a whole new way. Maybe someday she'll be using forearm crutches and walking around as her primary mode of transportation instead of using her wheelchair. Or maybe this will be fleeting and the walking will only last for a little while. Either way, it doesn't change what she's done this past week, or how proud I am of our girl. She continues to amaze me with her spirit and determination.
We have lots of pictures and videos that I'll be posting soon.
Leah has absolutely no feeling or movement in her legs, from her hips down to her toes. She needs a lot of help and bracing to stand up. When Leah was 1, she got a stander so we could get her upright. A few months later, we got her into a rolling stander so she could roll while standing up. We also borrowed a walker from friends, and stood her up in her stationary stander while holding onto the walker. I have a video of her doing that; when I asked her if she wants to walk someday, she nodded yes. We kept pushing on, last year getting her braces that went from her hips to her feet. She mainly used them to stand and fall. Falling, not walking.
Just about a month ago, we started doing stander time every night after dinner. For a long time, she's been hit or miss with the rolling stander. She complained a lot about getting in it, though I'm not really sure why, so she hadn't used it must. But recently, by bribing her with chocolate, she's been much more interested in it. She realized that she could reach the drawer with the "Leah bites" and we let her have 1. Then she realized she could reach the light switches in the dining room. That was fun! So finally, after all that... the stander, the walker, the rolling stander, and the falling... she was ready to walk!
It happened so fast. Last Sunday night, Leah was in her braces holding to her walker and doing her falling. I asked her if she could move forward. She kind of hopped. Then she did it again, and all of the sudden, she was hopping a few feet ahead. And again into the kitchen, across the dining room and back. Monday night we did more walking, more on Tuesday. I took her to the library on Friday and she walked for an hour and a half. At first I had to move her walker for her, but now she has that figured out too.
The way she does it is by pushing up on the walker and swinging her body forward. She is a bit of a daredevil and likes leaning really far, so we have to remind her to be careful or she'll fall. It's a slow process right now, just like it was for her to learn, but she's here. She's walking! The other night, she told me she wanted me to chase her around the kitchen. Chase!
This has been an incredible week. Leah has certainly done everything in her own time, and now this opens up the world to her in a whole new way. Maybe someday she'll be using forearm crutches and walking around as her primary mode of transportation instead of using her wheelchair. Or maybe this will be fleeting and the walking will only last for a little while. Either way, it doesn't change what she's done this past week, or how proud I am of our girl. She continues to amaze me with her spirit and determination.
We have lots of pictures and videos that I'll be posting soon.
Tuesday, January 6, 2015
Happy New Year!
Happy New Year!! Welcome to 2015.
2014 was a pretty darn good year for us. At least up until the last 2 weeks of it. In mid-December Leah was sent home from school because she threw up. We spent the rest of the weekend with her having a bit of a fever, and then a little over a week later we finally figured out that she had a UTI. This was after a couple more days of throwing up, staying home from daycare, and getting a call during my Christmas party to come home. Ugh! We had had a pretty good run with no UTI's, and I'm not quite sure why it happened again, or why it had to be during a busy time for both of us at work and in between a record number of Christmas parties, but we got it figured out.
We also had some big changes last month. I changed my day off at work from Tuesday to Friday, which will actually be really nice. We decided to take her out of daycare on Friday and instead of putting her in on Tuesday, we got a nanny. The first couple weeks were a little rough when she came and I had to leave for work, but now Leah loves her! She is wonderful and they have so much fun together. It's nice to have a little variety to Leah's week. Leah officially stopped going to daycare the first Friday in January; I adjusted my schedule in mid-December, so I had 2 Fridays off. It was amazing! And totally worth it to take 2 days, one right before and one right after Christmas. I was able to finish buying presents, grocery shopping, and doing other errands to get ready for, and then cleaning up after Christmas. It was so nice, I'll have to remember to do that more often... taking a day for myself to get things done. Just a few hours makes a big difference!
Speaking of Christmas, it was awesome. Last year Leah wasn't very into it and she didn't really know what was going on. This year was so much fun! She totally got Christmas, or started to get it. We did our annual Santa breakfast again this year, but I couldn't convince her to sit on his lap, and I didn't want to traumatize her for the rest of her life, so we just sat next to him and talked for a while. She told me afterwards that Santa's not scary! But she did get a little confused about Santa coming to her house - she thought he would come during the day and hand presents to her. She didn't realize he comes at night when everyone is asleep. On Christmas Eve she helped me put out Christmas cookies and milk for him and we checked under the tree to see if there were any presents. The next morning I asked if she thought Santa had come yet, and she said no, he was coming later. I loved the surprised face she made when she saw that his cookies were eaten, and then she was even more excited when she saw all the presents! It was so cute!! After she opened each present, she wanted to play with the new toys, but she had more to open. It a lot of fun.
We celebrated New Year's Eve at our neighbors' who have 2 little boys. The kids had fun with their hats and noisemakers and we were all home and in bed by 9:30. Thank goodness!
In all, 2014 was a great year for us. Leah's mobility grew this year, as did her vocabulary. We had 2 really fun vacations - to Tampa in April and Newport Beach, CA in October, and several trips back home to visit my family. I started out the year with an awesome long weekend to Disney World with my 2 girlfriends. We are looking forward to all the things to come in 2015!
2014 was a pretty darn good year for us. At least up until the last 2 weeks of it. In mid-December Leah was sent home from school because she threw up. We spent the rest of the weekend with her having a bit of a fever, and then a little over a week later we finally figured out that she had a UTI. This was after a couple more days of throwing up, staying home from daycare, and getting a call during my Christmas party to come home. Ugh! We had had a pretty good run with no UTI's, and I'm not quite sure why it happened again, or why it had to be during a busy time for both of us at work and in between a record number of Christmas parties, but we got it figured out.
We also had some big changes last month. I changed my day off at work from Tuesday to Friday, which will actually be really nice. We decided to take her out of daycare on Friday and instead of putting her in on Tuesday, we got a nanny. The first couple weeks were a little rough when she came and I had to leave for work, but now Leah loves her! She is wonderful and they have so much fun together. It's nice to have a little variety to Leah's week. Leah officially stopped going to daycare the first Friday in January; I adjusted my schedule in mid-December, so I had 2 Fridays off. It was amazing! And totally worth it to take 2 days, one right before and one right after Christmas. I was able to finish buying presents, grocery shopping, and doing other errands to get ready for, and then cleaning up after Christmas. It was so nice, I'll have to remember to do that more often... taking a day for myself to get things done. Just a few hours makes a big difference!
Speaking of Christmas, it was awesome. Last year Leah wasn't very into it and she didn't really know what was going on. This year was so much fun! She totally got Christmas, or started to get it. We did our annual Santa breakfast again this year, but I couldn't convince her to sit on his lap, and I didn't want to traumatize her for the rest of her life, so we just sat next to him and talked for a while. She told me afterwards that Santa's not scary! But she did get a little confused about Santa coming to her house - she thought he would come during the day and hand presents to her. She didn't realize he comes at night when everyone is asleep. On Christmas Eve she helped me put out Christmas cookies and milk for him and we checked under the tree to see if there were any presents. The next morning I asked if she thought Santa had come yet, and she said no, he was coming later. I loved the surprised face she made when she saw that his cookies were eaten, and then she was even more excited when she saw all the presents! It was so cute!! After she opened each present, she wanted to play with the new toys, but she had more to open. It a lot of fun.
We celebrated New Year's Eve at our neighbors' who have 2 little boys. The kids had fun with their hats and noisemakers and we were all home and in bed by 9:30. Thank goodness!
In all, 2014 was a great year for us. Leah's mobility grew this year, as did her vocabulary. We had 2 really fun vacations - to Tampa in April and Newport Beach, CA in October, and several trips back home to visit my family. I started out the year with an awesome long weekend to Disney World with my 2 girlfriends. We are looking forward to all the things to come in 2015!
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