I mentioned in a previous blog that shunts and bathroom stuff are the 2 topics most discussed with SB parents. Now it's time to talk about the bathroom stuff... well a little bit anyway. Leah has a spinal cord injury, and with all people who have spinal cord injuries, she doesn't have full feeling or control or function of her bladder. This is because the bladder and bowels are controlled by your very lowest vertebrae. When there is an injury to the spine, everything below that injury spot is damaged, so a higher injury means more parts of your body will be affected.
The bladder is a muscle. Like all muscles, it has to be trained and taught how to work. In a normally functioning person, you drink water, the bladder flexes to hold that liquid in, and you then contract the muscle to push the liquid out. In a person with a spinal injury, the bladder will act in 1 of 2 ways: either it will always flex to hold liquid in, or it will be limp and always allow liquid to seep out. When it's the former, the liquid can back up into the kidneys, causing reflux and damage. When it's the latter, the kidneys will stay healthy but the person will always be leaking. Both situations are a no-win for someone over the age of 4 who wants to be socially dry. Luckily, there are options available for people in both situations to control the bladder.
Both situations also mean that UTI's happen frequently because either way, the bladder doesn't empty itself fully. When urine stays in the bladder for too long, bacteria grows and infects the bladder and urinary tract... hence, Urinary Tract Infection. Even the tiniest, tracest amounts of urine can cause a UTI. UTI's cause a host of symptoms, like fevers, vomiting, lethargy, and can be painful, even in kids who can't fully feel the sensation of having to pee.
Leah's first UTI was last March. She spiked a fever, she was puking, and overall felt really awful. I could tell that she wasn't herself. I had remembered Dr. Marker telling me how common UTI's were and his nurse had given me a kit to take a urine sample, and a prescription antibiotic to start her on if she showed symptoms. That started an 8-month cycle of UTI's that went something like this: get a fever, puke, and be sick... send in a sample... take antibiotics for 10 days... be healthy for a few weeks... get another fever, puke and be sick. This happened almost like clockwork every 4-6 weeks. 6 UTI's in 8 months. I wanted to puke!
During this time I was trying all sorts of home remedies, giving cranberry juice and slathering coconut oil all over her bottom. Every month she still got one. And every month she had to be on antibiotics. I don't like having to give medicine as it is, so going on her 6th round of meds in as many months was really upsetting. That's when our cranial-sacral therapist told me about an unusual remedy for UTI's... that actually worked!!
Now I use Shak.lee's Bas.ic H cleaning solution in her bath water. It's a regular, home cleaning product that I found on amazon dot com. The way it works is that it makes the water lighter than water, or in other words, more slippery than water. It cleans out the bladder and urinary tract and empties the bladder of any leftover urine that's been sitting in there before it can get infected. It has absolutely done wonders for Leah. I put it in her bath at least twice a week, and in the mornings after I use it, her diaper is really full and stinky, so I can tell that it's working. Her last UTI was over a year ago.
I'm sharing this in case there are other parents out there who are battling with this like we were, and can at least give it a try. Around the time of her last UTI, I started to think that we can't go on like this anymore. She couldn't be on a path like this, where she's constantly sick and on antibiotics. It just isn't good for her, or us. I was thinking that we'd have to start the process to catheterize her, and I just wasn't ready for that. Now, we still don't, and her scans show that her kidneys continue to be in good health, so what we are doing is working. Now that she's 3, it is time to start thinking about getting her out of diapers, but now we can do that on our time, when we feel that it's right, research all our options and fully understand what that means.... and not because her health was on the line.
Monday, December 1, 2014
Sunday, November 16, 2014
2nd Shuntiversary
It was 2 years ago today that Leah got her current shunt. You can read all about our first shunt experience, which seems so far away now. Even though it's a distant memory, the topic of her shunt is one that I think about on a fairly regular basis. It's brought up in casual settings, like when I'm combing her hair and I can see and feel it. I think about it anytime she seems a little off, whether she's a bit distracted or tired, or overly cranky. Anytime she pukes, it's the first thing that comes to mind (which thankfully, hasn't been an issue lately - but she does have an overactive gag reflex, so it's more common that you may think. ((PS, someday I'll have to share the story about my birthday dinner)). )
Her shunt is an important part of her life, it's a necessary evil, if you will. It keeps her alive and functioning like a normal 3-year old, but it also has no mercy and can stop working at any time. The most talked about topics among any SB parents are shunts and bathroom programs... and ironically enough they are both shitty topics.
How do we monitor her shunt? In the beginning, she was getting regular head exams to see if her ventricles were still the same size. For the first 18 months before her soft spot filled in, we could do that with a simple ultrasound. It was a bit gooey, but very simple. After that, we had to spend 5-10 horrific minutes strapping her into a machine to take X-rays or CT scan or a rapid MRI. OH.MY.GOD. If you ever think 5 minutes goes by fast, you haven't sang Twinkle Twinkle or the ABC's over the deafening screams of a toddler plus the whirling and whooshing sounds of an MRI machine. Those scans are then read by Pete and Dr. Nagib and Dr. Marker to make sure they look how they should. Pete is able to bring them up on the computer, and he can clearly show us how they look compared to last time. At first I was totally pretending that I knew what I was looking at when it just looked like a big blob. Now, though, I can actually make out the ventricles and see pockets of fluid. Her ventricles will always be a little bigger than normal, but what's important is that she is able to handle that little bit of extra pressure, and it has just become normal to her.
What is the shunt doing? Well, the shunt is draining out the excess spinal fluid out of her head. Everyone produces spinal fluid that surrounds the brain and carries messages throughout the body. In a normally functioning person, that fluid is able to go down the spinal cord and into the body. Leah's spinal cord is broken, so creates a dam and the fluid backs up into her brain. Think thawing rivers when downstream is still frozen. There's nowhere for all that fluid to go, so it causes severe brain damage. The shunt can detect when the fluid is getting too high, and signals the valve to open and diverts the fluid down the tubing into her abdomen.
When do shunts fail? Whenever they damn well want to! Seriously, I have no idea. They do because they do. And they work because they work. Luck? Prayers? Skilled surgeons? Yes? no? ... or maybe something else altogether. We just don't know. We are fortunate that in almost all cases a shunt failure isn't an emergency. In fact, most shunt failures happen over a long period of time when signs are very faint, and over time become more apparent... and then you look back and think, oh so that's what was going on!
When I think about 2 years ago, it seems far away, but it will never escape me that we could be right back there at a moment's notice. I wouldn't say I think about it all the time, but whenever I see a call from daycare, or notice that she's acting weird, or just think that we've had a little bit of good luck lately, I get that feeling like it's going to happen again. This shunt, it causes me a lot of headaches, but it prevents them in Leah. I suppose that's a fair trade-off.
Her shunt is an important part of her life, it's a necessary evil, if you will. It keeps her alive and functioning like a normal 3-year old, but it also has no mercy and can stop working at any time. The most talked about topics among any SB parents are shunts and bathroom programs... and ironically enough they are both shitty topics.
How do we monitor her shunt? In the beginning, she was getting regular head exams to see if her ventricles were still the same size. For the first 18 months before her soft spot filled in, we could do that with a simple ultrasound. It was a bit gooey, but very simple. After that, we had to spend 5-10 horrific minutes strapping her into a machine to take X-rays or CT scan or a rapid MRI. OH.MY.GOD. If you ever think 5 minutes goes by fast, you haven't sang Twinkle Twinkle or the ABC's over the deafening screams of a toddler plus the whirling and whooshing sounds of an MRI machine. Those scans are then read by Pete and Dr. Nagib and Dr. Marker to make sure they look how they should. Pete is able to bring them up on the computer, and he can clearly show us how they look compared to last time. At first I was totally pretending that I knew what I was looking at when it just looked like a big blob. Now, though, I can actually make out the ventricles and see pockets of fluid. Her ventricles will always be a little bigger than normal, but what's important is that she is able to handle that little bit of extra pressure, and it has just become normal to her.
What is the shunt doing? Well, the shunt is draining out the excess spinal fluid out of her head. Everyone produces spinal fluid that surrounds the brain and carries messages throughout the body. In a normally functioning person, that fluid is able to go down the spinal cord and into the body. Leah's spinal cord is broken, so creates a dam and the fluid backs up into her brain. Think thawing rivers when downstream is still frozen. There's nowhere for all that fluid to go, so it causes severe brain damage. The shunt can detect when the fluid is getting too high, and signals the valve to open and diverts the fluid down the tubing into her abdomen.
When do shunts fail? Whenever they damn well want to! Seriously, I have no idea. They do because they do. And they work because they work. Luck? Prayers? Skilled surgeons? Yes? no? ... or maybe something else altogether. We just don't know. We are fortunate that in almost all cases a shunt failure isn't an emergency. In fact, most shunt failures happen over a long period of time when signs are very faint, and over time become more apparent... and then you look back and think, oh so that's what was going on!
When I think about 2 years ago, it seems far away, but it will never escape me that we could be right back there at a moment's notice. I wouldn't say I think about it all the time, but whenever I see a call from daycare, or notice that she's acting weird, or just think that we've had a little bit of good luck lately, I get that feeling like it's going to happen again. This shunt, it causes me a lot of headaches, but it prevents them in Leah. I suppose that's a fair trade-off.
Thursday, November 13, 2014
Monday, November 10, 2014
Happy Birthday Leah!
It's Leah's 3rd birthday today. I can't even begin to believe that it's already been 3 years since she's been in our lives, it seems like it's been forever. We had a small birthday celebration yesterday with her grandparents for lunch and presents and cupcakes. All Leah wanted for her birthday was balloons and candles, so that's what she got from us! Tonight we went for dinner at her favorite place and got mac-n-cheese her favorite, and back home for a cupcake. I have lots of pictures on my camera that I need to download so check back in a few days and I'll get birthday pics loaded.
Happy Birthday, Leah!
Happy Birthday, Leah!
Tuesday, November 4, 2014
Happy Halloween
Boo! Leah had a great time celebrating Halloween this year, especially after she realized that she could get candy, lots and lots of candy. Since she just got a new tractor, we decided to use it as part of her costume, so she went as a farmer. After building a train costume last year, this was quite a bit easier. The overalls from last year still fit, I only needed to buy a plaid shirt, and fill her trailer with pumpkins and hay. Voila, a costume!
We were fortunate to have 2 fun Halloween events to celebrate this year. On the Saturday before, we went to the trick-or-treating event here in town at the local shopping center. All the stores gave out candy and there was a DJ set up in the parking lot. We decided not to bring the tractor to this event so she just used her wheelchair. It was a lot of fun and she saw a few friends from school. We went with our neighbors who have 2 little boys and the 3 little kids had a great time.
On Halloween night we went over to our same friends' house for dinner and then trick-or-treated around the block. Daylight Savings Time must have been later this year, since it got dark closer to 6, and I remember the last couple years going out around 5:30. Leah drove her tractor down the block and then decided she was done with it, so we had to leave it in a neighbor's yard and carry her the rest of the way. She's a funny kid. Either way, we still had fun and now we have a bag full of candy that she constantly asks about.
Leah: See in my basket.
Mommy: You may look but you already had a treat today.
I hand her the basket and she takes all the candy out. I turn around for 2 seconds and she's opening another piece.
Mommy: Leah, you have had your 1 treat for today, let's put the candy away.
Leah: EEEEEEEEEEEEHHHHHHHHHHHHHHHHHHHHHHHHHHHH.
Yeah, I think I need to do something with the candy basket.
Anyway, here is our little farmer all decked out.
.JPG)
.JPG)
.JPG)
.JPG)
.JPG)
We were fortunate to have 2 fun Halloween events to celebrate this year. On the Saturday before, we went to the trick-or-treating event here in town at the local shopping center. All the stores gave out candy and there was a DJ set up in the parking lot. We decided not to bring the tractor to this event so she just used her wheelchair. It was a lot of fun and she saw a few friends from school. We went with our neighbors who have 2 little boys and the 3 little kids had a great time.
On Halloween night we went over to our same friends' house for dinner and then trick-or-treated around the block. Daylight Savings Time must have been later this year, since it got dark closer to 6, and I remember the last couple years going out around 5:30. Leah drove her tractor down the block and then decided she was done with it, so we had to leave it in a neighbor's yard and carry her the rest of the way. She's a funny kid. Either way, we still had fun and now we have a bag full of candy that she constantly asks about.
Leah: See in my basket.
Mommy: You may look but you already had a treat today.
I hand her the basket and she takes all the candy out. I turn around for 2 seconds and she's opening another piece.
Mommy: Leah, you have had your 1 treat for today, let's put the candy away.
Leah: EEEEEEEEEEEEHHHHHHHHHHHHHHHHHHHHHHHHHHHH.
Yeah, I think I need to do something with the candy basket.
Anyway, here is our little farmer all decked out.
Sunday, October 26, 2014
First Steps
Taking those first steps is a pretty big milestone. Usually it happens around 1, so we're about 2 years later than "normal", but it still happened. Today was a pretty uneventful day, other than it being 60 degrees in late October. We were outside for an hour with Leah in her rolling stander, and I think that might have sparked a renewed interest in walking. She came into the house still in the stander and I couldn't believe how tall she was! She rolled over to the garbage and proceeded to pull out (and eat) a carrot peel, but we won't go into that here.
Anyway, after dinner she asked to go in her stander. We were out in the family room that has hard floors, and Leah was standing up using her HKAFO's and holding onto her walker. She leaned forward a little bit and then pulled herself forward. Oh My Goodness! Was that just her first step???? Yes, I think it was! Then she did it again, an inch at a time. Well, then wouldn't you know then next time she fell flat on her face, and only barely missed splitting open her face by about an inch. Oops. Tears and tears, but we had a little pep talk about how sometimes you have to fall a few times before you learn how to do it right. I'm not sure she totally bought that, but we then moved into the kitchen where I held onto her legs and she pulled herself forward about 3 feet.... just a little bit at a time.
I wish I had a few pictures or a video to share, but I didn't think this is what would be happening this evening. Hopefully we'll capture her in the action soon!
Anyway, after dinner she asked to go in her stander. We were out in the family room that has hard floors, and Leah was standing up using her HKAFO's and holding onto her walker. She leaned forward a little bit and then pulled herself forward. Oh My Goodness! Was that just her first step???? Yes, I think it was! Then she did it again, an inch at a time. Well, then wouldn't you know then next time she fell flat on her face, and only barely missed splitting open her face by about an inch. Oops. Tears and tears, but we had a little pep talk about how sometimes you have to fall a few times before you learn how to do it right. I'm not sure she totally bought that, but we then moved into the kitchen where I held onto her legs and she pulled herself forward about 3 feet.... just a little bit at a time.
I wish I had a few pictures or a video to share, but I didn't think this is what would be happening this evening. Hopefully we'll capture her in the action soon!
Wednesday, October 15, 2014
SB Technologies
Technology is moving faster and faster, and there are more and more advancements in medical care. Spina Bifida is no exception. Kids who are born with myelomeningocele, the most common form of SB, need surgery to close the gaping hole in their backs. Most of these babies have operations in the first 1-2 days they are born. As I have posted before, there are some who have surgery in utero. This was not what we chose for Leah, as it was still relatively experimental, and we were not ready to take the risks associated with it. But, of course, as time goes on, the surgery has gotten better. It certainly has in just the 3 short years since we had to make the choice.
Here is a link to an article about the surgery as it "comes of age." Warning, some of the pictures are kind of graphic but it gives a great description of the surgery and of SB in general.
http://www.npr.org/2011/07/11/137712436/a-prenatal-surgery-for-spina-bifida-comes-of-age
Here is a link to an article about the surgery as it "comes of age." Warning, some of the pictures are kind of graphic but it gives a great description of the surgery and of SB in general.
http://www.npr.org/2011/07/11/137712436/a-prenatal-surgery-for-spina-bifida-comes-of-age
Tuesday, October 14, 2014
Go Baby Go
There has been a lot of research showing the link between mobility and a child's development in other areas. Young children who have mobility impairments are at risk for developmental delays in other areas, like language, social, cognitive and fine motor skills. This is why it is very important for kids who have motor limitations to find ways to become mobile. If you've ever watched toddlers, you see that they move constantly... everything is something new to explore... and all that exploration is how young kids learn. Given Leah's physical limitations, we have always tried to help her be mobile in her own way. All of her wheels have given her this mobility. However, there is one place she has a hard time... outside.
Earlier this summer our neighbor brought us a magazine from the University of Delaware, her alma mater. In it featured a story of how the U of D is collaborating with engineers to provide mobility for kids with physical disabilities. The story was about a little boy who had cables and wires all over his house so he could move freely throughout. There were hanging cables from the ceiling going into every room and he swung from room to room. Awesome! We started looking more into this, and found out that it was the work of U of D's Go Baby Go department.
In 2006 a pediatric researcher launched the Go Baby Go program, and they are helping to give the gift of mobility to kids by modifying off-the-shelf power cars. On a whim, I posted to their site that we are based in Minneapolis and would love to get in touch with someone to help modify a car for Leah. As fate would have it, there was someone here in Minneapolis checking the Go Baby Go site at the same time and contacted us to help make this car.
Bridget works for an organization here called PACER. PACER is a non-profit whose mission is to help parents of children with special needs to be an advocate for them. Bridget had just recently attended a conference at U of D and was interested and excited to make a Go Baby Go car for a child... she just needed to fine one!
Over the past several months we have met with PACER, picked out a car, and had several fittings in the car. We chose a John Deere tractor, which she will be able to grow into for several years, and an engineer donated his time to rewire the pedal from the foot up to the steering wheel. They also added a seat belt and straps to keep her feet secure. Finally the other day it was ready for us to pick it up. She did awesome! And loves it so, so much. It has been great for her to be outside in the yard and driving up and down the street.
None of it would be possible without the kindness and generosity of PACER, and we are so grateful that they chose to work with us. Here are some pictures of her enjoying her new Go Baby Go.
.JPG)
.JPG)
.JPG)
.JPG)
Earlier this summer our neighbor brought us a magazine from the University of Delaware, her alma mater. In it featured a story of how the U of D is collaborating with engineers to provide mobility for kids with physical disabilities. The story was about a little boy who had cables and wires all over his house so he could move freely throughout. There were hanging cables from the ceiling going into every room and he swung from room to room. Awesome! We started looking more into this, and found out that it was the work of U of D's Go Baby Go department.
In 2006 a pediatric researcher launched the Go Baby Go program, and they are helping to give the gift of mobility to kids by modifying off-the-shelf power cars. On a whim, I posted to their site that we are based in Minneapolis and would love to get in touch with someone to help modify a car for Leah. As fate would have it, there was someone here in Minneapolis checking the Go Baby Go site at the same time and contacted us to help make this car.
Bridget works for an organization here called PACER. PACER is a non-profit whose mission is to help parents of children with special needs to be an advocate for them. Bridget had just recently attended a conference at U of D and was interested and excited to make a Go Baby Go car for a child... she just needed to fine one!
Over the past several months we have met with PACER, picked out a car, and had several fittings in the car. We chose a John Deere tractor, which she will be able to grow into for several years, and an engineer donated his time to rewire the pedal from the foot up to the steering wheel. They also added a seat belt and straps to keep her feet secure. Finally the other day it was ready for us to pick it up. She did awesome! And loves it so, so much. It has been great for her to be outside in the yard and driving up and down the street.
None of it would be possible without the kindness and generosity of PACER, and we are so grateful that they chose to work with us. Here are some pictures of her enjoying her new Go Baby Go.
Monday, October 13, 2014
Shake It Off
Enjoy this great little video of kids with Spina Bifida. You won't see Leah in it but we recognized lots of her friends!
https://www.youtube.com/watch?v=LLUTCix-gog
https://www.youtube.com/watch?v=LLUTCix-gog
Sunday, October 12, 2014
October Is...
Spina Bifida Awareness Month
While breast cancer and domestic violence and bullying tend to get a lot of attention this time of year, it's also SB Awareness Month!!
I have been totally behind in posting during this most important month! October just kind of snuck up on me and then all of the sudden it was here and we were on our way out of town for a family vacation. We had the most awesome time in Newport Beach, CA, where we rented a house for a week (more about our trip later). In the meantime, all my SB friends have been sharing their stories and posts, and while I have thought about it, I haven't shared much. Even so, it is an important time to spread awareness and the hope for inclusion. While I don't have much to share at this moment, I will use the rest of the month to share my side of the SB story.
Keep Calm, Wheel On
While breast cancer and domestic violence and bullying tend to get a lot of attention this time of year, it's also SB Awareness Month!!
I have been totally behind in posting during this most important month! October just kind of snuck up on me and then all of the sudden it was here and we were on our way out of town for a family vacation. We had the most awesome time in Newport Beach, CA, where we rented a house for a week (more about our trip later). In the meantime, all my SB friends have been sharing their stories and posts, and while I have thought about it, I haven't shared much. Even so, it is an important time to spread awareness and the hope for inclusion. While I don't have much to share at this moment, I will use the rest of the month to share my side of the SB story.
Keep Calm, Wheel On
Tuesday, September 2, 2014
Huge, Amazing, Unbelievable News!
Summer is over! That is big news here in Minnesota. Leah is doing great! That is even better news. And that is pretty much the extent to what's new around here. Seriously, we have been really busy doing nothing, and our huge, unbelievable news is absolutely nothing. June was kind of a disaster with Leah's neck issues, which continued well into July. In mid-July she had another appointment with her cranial-sacral therapist, who worked on her for 35 minutes (normal appointment is 20). It turns out that Leah had started to get torticollis, which is a condition that happens when the neck is out of alignment. It's really common in babies but Leah had favored one side over the other for so long that her entire neck and spine got out of alignment. Angel to the rescue! After a long appointment and another follow-up 2 weeks later, and Leah is back to normal.
Then all of the sudden it was August. We walked down to the lake a lot, had a lot of ice cream and icy-pops, and played in the water table. My brother and sister-in-law came to visit with their 2 boys, who Leah loves! We went on a trolley ride, to the zoo, and shot off fireworks in our backyard. The other weekend was the Spina Bifida Walk-Run-Roll. This year we opted not to walk/run and instead just played on the playground. It felt a lot less rushed and we were able to spend more time visiting with other families, which is my favorite part of the event. The other great thing is comparing equipment. Leah tried out a bigger wheelchair, which was much better than what we currently has. Hers is smaller and very heavy, and this one is much lighter, so much so that she was able to roll up a slight incline... something she can barely do with her chair. This one also sits her up higher and the seat is tipped back slightly so she wouldn't need a chest strap. Yes, her current chair is fine, but we want her to be in something amazing. We'll be trying to get her into something new in the next couple months.
In other mobility news, we are also in the process of working on getting her a Go-Baby-Go car. Go-Baby-Go is an organization at the University of Delaware. The program is based on the need for kids to be mobile, and helps adapt devices to help children who have mobility challenges.
http://www.udel.edu/gobabygo/
There is a lot of research showing the link between mobility and brain development. Kids who aren't mobile aren't able to explore and socialize the way normal kids can. That's why mobility is so, so important, and why we push and push for Leah to have mobility. A few months ago we posted on the GBG page asking if anyone in Minnesota would be willing to make a car for Leah, and surprise! we got someone willing to help. Just this morning we saw the car, which is a John Deere tractor (a pint-size version of what Daddy has), and it needs to be modified for her. She needs a seat belt and the pedal will be moved up to the steering wheel. Hopefully we'll have it soon, before the snow falls, which could be any day now.
While we have been having a great summer, there was sad news for friends of ours. They lost their little boy a couple weeks ago. Lincoln passed away from complications of his epilepsy and cerebral palsy. We actually ran into them a few months ago at the bike expo and what a sweetheart he was. Big smile, bigger heart. Please say extra prayers for them, and hugs your kids extra tight. Life is precious.
Yes, yes, I know I've been a little negligent with the blog lately. I have been reminded by more than a few people. I can't promise anything but I will try to post more updates. I have a number of pictures from our summer adventures that I want to add.
Then all of the sudden it was August. We walked down to the lake a lot, had a lot of ice cream and icy-pops, and played in the water table. My brother and sister-in-law came to visit with their 2 boys, who Leah loves! We went on a trolley ride, to the zoo, and shot off fireworks in our backyard. The other weekend was the Spina Bifida Walk-Run-Roll. This year we opted not to walk/run and instead just played on the playground. It felt a lot less rushed and we were able to spend more time visiting with other families, which is my favorite part of the event. The other great thing is comparing equipment. Leah tried out a bigger wheelchair, which was much better than what we currently has. Hers is smaller and very heavy, and this one is much lighter, so much so that she was able to roll up a slight incline... something she can barely do with her chair. This one also sits her up higher and the seat is tipped back slightly so she wouldn't need a chest strap. Yes, her current chair is fine, but we want her to be in something amazing. We'll be trying to get her into something new in the next couple months.
In other mobility news, we are also in the process of working on getting her a Go-Baby-Go car. Go-Baby-Go is an organization at the University of Delaware. The program is based on the need for kids to be mobile, and helps adapt devices to help children who have mobility challenges.
http://www.udel.edu/gobabygo/
There is a lot of research showing the link between mobility and brain development. Kids who aren't mobile aren't able to explore and socialize the way normal kids can. That's why mobility is so, so important, and why we push and push for Leah to have mobility. A few months ago we posted on the GBG page asking if anyone in Minnesota would be willing to make a car for Leah, and surprise! we got someone willing to help. Just this morning we saw the car, which is a John Deere tractor (a pint-size version of what Daddy has), and it needs to be modified for her. She needs a seat belt and the pedal will be moved up to the steering wheel. Hopefully we'll have it soon, before the snow falls, which could be any day now.
While we have been having a great summer, there was sad news for friends of ours. They lost their little boy a couple weeks ago. Lincoln passed away from complications of his epilepsy and cerebral palsy. We actually ran into them a few months ago at the bike expo and what a sweetheart he was. Big smile, bigger heart. Please say extra prayers for them, and hugs your kids extra tight. Life is precious.
Yes, yes, I know I've been a little negligent with the blog lately. I have been reminded by more than a few people. I can't promise anything but I will try to post more updates. I have a number of pictures from our summer adventures that I want to add.
Monday, July 14, 2014
Long Overdue Update
Where do I even begin?? I’ll start by saying that I’m so glad June is over! It was a long and tiring month. We spent most of the month worrying about Leah’s neck. After my last post, things didn’t seem to be getting any better, and for a while seemed like she was getting worse. She wasn’t turning at all to the left and it was obvious that she was in a great deal of pain. There were several nights when she wasn’t sleeping at all or only slept on me, so I didn’t get much sleep either. We finally got her back into see Dr. Marker and he was puzzled too. Not what we wanted to hear! And scheduled an MRI to see what exactly is going on in there. One of the concerns was that her chairi malformation, which is at the base of her brain, was putting pressure on her nerves and causing the pain. Of course we always worry about her shunt, and what if something else was wrong? AAAAHHHHH! A regular visit to our cranial-sacral therapist didn’t even seem to help much, so by this time I was pretty worried.
We finally had her MRI scheduled for July 2. Wouldn’t you know it, the day before she woke up with a fever of 103 and was sick all day, even taking 2 naps. We just can’t catch a break! She woke up that morning feeling much better and we were able to go on with the scans. We’ve done this drill before… 4 other times where I’ve held her while she goes to sleep. But this was worse than all the others. Maybe it was that I was just so tired or I was worried because I didn’t know what the outcome would be, but whatever it was, I had a much harder time than in the past. I have to say, though, that she was a total trooper and charmed the pants off everyone there, even as she was drifting off to sleep. I went to lay her down on the machine and she started crying, so I sat in the chair and held her while she drifted off. One of the nurses blew bubbles at her and they loved that she referred to herself by her name “Leah” and got a kick of out of her teeny tiny painted toenails. An hour and a half later, we got to go back into her room where she was still sleeping. It was about another 15 minutes before she fully woke up and was in a pretty good mood. She was very excited to get juice, a rare treat, and have some snuggles with us.
Then off we headed to our neurosurgeon’s office… the dreaded, dreaded meeting to see what awful terrible things are happening inside her neck. It turned out to be nothing. Absolutely freaking nothing! A small part of me was almost a little disappointed that it was nothing, and I felt kind of silly for making such a big deal about it. Our neuro was so great, though, and he reassured us that we did the right thing by getting her in. There could be a few things happening. First, she could have actually pulled a muscle in her neck, and it just needed a few weeks to start feeling better. Second, sometimes the shunt tubing gets stuck or develops adhesions, which is slightly uncomfortable and not usually anything serious. He typically sees that in kids who go through a big growth spurt (think about a 13-year old)… like growing several inches in a short period of time. Either way, our remedy is to do some Tylenol and do massage along her neck to loosen things up. It seems to be working because she is getting better but not back to full rotation yet. We’re almost there!
After everything we’d just gone through, all the worrying and all the sleepless nights, I just shut down when we got home. I was so done. It’s amazing how quickly it hit me and I can’t remember the last time I felt so tired. I am so thankful my parents had just got into town and could help take over for a little bit. We ended up having a beautiful holiday weekend, celebrated the 4th and got an extra day to relax. I have lots more to share about our fun weekend and everything that's happened in the last couple weeks. More to come!
We finally had her MRI scheduled for July 2. Wouldn’t you know it, the day before she woke up with a fever of 103 and was sick all day, even taking 2 naps. We just can’t catch a break! She woke up that morning feeling much better and we were able to go on with the scans. We’ve done this drill before… 4 other times where I’ve held her while she goes to sleep. But this was worse than all the others. Maybe it was that I was just so tired or I was worried because I didn’t know what the outcome would be, but whatever it was, I had a much harder time than in the past. I have to say, though, that she was a total trooper and charmed the pants off everyone there, even as she was drifting off to sleep. I went to lay her down on the machine and she started crying, so I sat in the chair and held her while she drifted off. One of the nurses blew bubbles at her and they loved that she referred to herself by her name “Leah” and got a kick of out of her teeny tiny painted toenails. An hour and a half later, we got to go back into her room where she was still sleeping. It was about another 15 minutes before she fully woke up and was in a pretty good mood. She was very excited to get juice, a rare treat, and have some snuggles with us.
Then off we headed to our neurosurgeon’s office… the dreaded, dreaded meeting to see what awful terrible things are happening inside her neck. It turned out to be nothing. Absolutely freaking nothing! A small part of me was almost a little disappointed that it was nothing, and I felt kind of silly for making such a big deal about it. Our neuro was so great, though, and he reassured us that we did the right thing by getting her in. There could be a few things happening. First, she could have actually pulled a muscle in her neck, and it just needed a few weeks to start feeling better. Second, sometimes the shunt tubing gets stuck or develops adhesions, which is slightly uncomfortable and not usually anything serious. He typically sees that in kids who go through a big growth spurt (think about a 13-year old)… like growing several inches in a short period of time. Either way, our remedy is to do some Tylenol and do massage along her neck to loosen things up. It seems to be working because she is getting better but not back to full rotation yet. We’re almost there!
After everything we’d just gone through, all the worrying and all the sleepless nights, I just shut down when we got home. I was so done. It’s amazing how quickly it hit me and I can’t remember the last time I felt so tired. I am so thankful my parents had just got into town and could help take over for a little bit. We ended up having a beautiful holiday weekend, celebrated the 4th and got an extra day to relax. I have lots more to share about our fun weekend and everything that's happened in the last couple weeks. More to come!
Saturday, June 14, 2014
When Something Isn't Right
Dr. Marker comes to the rescue! Last Sunday afternoon Leah woke up from a nap in the car crying that her neck hurt. When we got home, she didn't turn her head to the right. For the next couple days she complained about her neck, sometimes she said she couldn't turn her head right and sometimes she couldn't turn left. I tried a couple times to move her head and I could tell it really bothered her. Finally, the other morning daycare called me to say that she was really in pain. We'd been googling her symptoms and the results weren't looking great. Meningitis, shunt tubing issue, or worse. Luckily, Dr. Marker's office was able to squeeze us into his busy schedule because she was in pain. As soon as he walked into the room, he said very definitively it's not a shunt issue. I was wondering how the heck he could possibly know that when he barely saw her for 5 seconds, but sure enough he felt her neck and said that her lymph nodes were swollen and she has tonsillitis. Then he laughed and apologized that he probably should have said that on the phone when we talked to him.
Leah was a trooper! She was so cooperative when he looked in her ears, felt around her neck and she even opened wide enough so he could see her tonsils... which, sure enough, were infected. Again, I still am trying to wrap my head around how he knew that. We were only there for a few minutes and a huge relief came across us both. We had packed a bag thinking there was a chance we'd be heading into the hospital that afternoon. Nope! Instead we got to go home and take a long nap. Leah slept for 3 hours!!
While we were there, Dr. Marker did say something that scared the crap out of us. In passing conversation he was talking about tonsils and referenced his brother, who, at 70 years old, is a few years younger than Dr. Marker. Ty and I both looked at each other in horror... Dr. Marker is in his 70's??!!??!! No, no, no, no, no! What are we going to do without him? Oh the horror! Seriously, I don't know what we are going to do without him. What other doctor does what he does? I can't think about him not being around much longer. It's going to be a very sad day for us when he retires because of how amazing he is. Not just because he knows a lot about SB or tonsillitis but because he's still "old school" and will return our calls at all hours of the day, squeeze us into his busy schedule, and give us such a peace of mind about Leah.
Now that we are on day 3 of antibiotics, Leah seems to be doing much better. She slept all through the night last night for the first time in a long time. She still won't turn her head all the way, but that's more out of fear that it will hurt than it actually hurts right now. She was very happy to go back to school yesterday and rolled into the classroom announcing, "I'm all betty now!" Our little girl is on the mend.
Leah was a trooper! She was so cooperative when he looked in her ears, felt around her neck and she even opened wide enough so he could see her tonsils... which, sure enough, were infected. Again, I still am trying to wrap my head around how he knew that. We were only there for a few minutes and a huge relief came across us both. We had packed a bag thinking there was a chance we'd be heading into the hospital that afternoon. Nope! Instead we got to go home and take a long nap. Leah slept for 3 hours!!
While we were there, Dr. Marker did say something that scared the crap out of us. In passing conversation he was talking about tonsils and referenced his brother, who, at 70 years old, is a few years younger than Dr. Marker. Ty and I both looked at each other in horror... Dr. Marker is in his 70's??!!??!! No, no, no, no, no! What are we going to do without him? Oh the horror! Seriously, I don't know what we are going to do without him. What other doctor does what he does? I can't think about him not being around much longer. It's going to be a very sad day for us when he retires because of how amazing he is. Not just because he knows a lot about SB or tonsillitis but because he's still "old school" and will return our calls at all hours of the day, squeeze us into his busy schedule, and give us such a peace of mind about Leah.
Now that we are on day 3 of antibiotics, Leah seems to be doing much better. She slept all through the night last night for the first time in a long time. She still won't turn her head all the way, but that's more out of fear that it will hurt than it actually hurts right now. She was very happy to go back to school yesterday and rolled into the classroom announcing, "I'm all betty now!" Our little girl is on the mend.
Tuesday, June 10, 2014
What a Difference a Year Makes
It's now been a year since Leah switched daycare centers. Her first day at her new school was the first week of June, and with that anniversary here, I am reminded of what a difficult time we had last year. Can I just burn the memory from my mind and forget about it altogether? That old saying "when one door closes, another opens" rings true for me in this situation. I never would have found Leah's new daycare had we not otherwise been turned away. I suppose we would have been blissfully unaware that we could have something better for Leah. There are times when I'm dropping her off or picking her up when I just feel overwhelmed with emotions and I can't believe our good fortune that we ended up here. But then I remember how we got here. It's been a year but it's still very fresh, and is still hard to talk about it or even think about it without getting emotional or wanting to punch someone in the face (you know who you are, old daycare center director).
Even typing it here, I start tearing up as I think about last year how our last daycare... kicked her out because... of her disability. Insert major heartbreak. I suppose in all great stories, there is a plot twist, a conflict that the characters have to overcome, and this is just that for us. Luckily we got the happy ending. I just wish it didn't come with heartache to get here.
As I think about other things going on in our lives at this time last year, it was also when we got her first wheelchair, the one she still has today. That was a huge step for her, and for us, in a lot of different ways. Getting a chair has given her a huge gift of mobility. It has also given me a sort of finality that she is going to be a wheeler. Yes, she is practicing standing and walking, but then I look at her little legs that are as floppy as overcooked spaghetti noodles and wonder if she'll ever muster the courage and strength to do it. I guess I'll just have to wait and see.
Even typing it here, I start tearing up as I think about last year how our last daycare... kicked her out because... of her disability. Insert major heartbreak. I suppose in all great stories, there is a plot twist, a conflict that the characters have to overcome, and this is just that for us. Luckily we got the happy ending. I just wish it didn't come with heartache to get here.
As I think about other things going on in our lives at this time last year, it was also when we got her first wheelchair, the one she still has today. That was a huge step for her, and for us, in a lot of different ways. Getting a chair has given her a huge gift of mobility. It has also given me a sort of finality that she is going to be a wheeler. Yes, she is practicing standing and walking, but then I look at her little legs that are as floppy as overcooked spaghetti noodles and wonder if she'll ever muster the courage and strength to do it. I guess I'll just have to wait and see.
Sunday, May 11, 2014
Leah Ride a Bike
Leah got a new bike!! Last weekend we went to a bike expo for children with disabilities. While we were there, we ran into a few other families we knew, and one of them offered us their son's old bike. We were thrilled because a new bike for Leah would have cost around $1,000. Yesterday Ty went to pick it up. They had warned us that the chain was broken, but Ty was confident he could fix it. Leah was so excited to see it! She loves being outside (or, out-a-side as she says) and was having so much fun riding on it while we pushed her. Since it needed a new chain, Ty took it into the bike shop near our house and they were kind enough to put a new chain on it right on the spot.
This is going to be a game changer for Leah this summer. It will allow her to be outside on a bike, just like other kids. It's a hand trike so she pedals it with her arms, and it was amazing to see that she knew exactly what to do. She loves it!
This is going to be a game changer for Leah this summer. It will allow her to be outside on a bike, just like other kids. It's a hand trike so she pedals it with her arms, and it was amazing to see that she knew exactly what to do. She loves it!
Sunday, April 27, 2014
Out and About
We have been pretty busy lately. Two weekends ago we had the annual Spina Bifida roller skating party. This was the party where last year Leah got to try out a big-girl wheelchair for the first time. What a difference a year makes! This year she was out in full force with her wheels and she also enjoyed the company of her own friends. She definitely has opinions about who she likes, what she likes and doesn't like.... and she isn't afraid to speak her mind. Thank goodness/oh my goodness! I think the girl is going to give us a run for our money. I also enjoyed this year for what it was. I'm in a much better place now than I was at the last event because this is her reality, we know it and we know how to manage it. Last year we were just at the cusp of having her in a chair and I was having a hard time picturing that this will be our life. I was also very absorbed in watching her move around, almost as if it was for the first time. She had been in her zip-zac a lot, but that night was really a turning point for her in terms of mobility. It was like the light bulb went off when she saw all the other kids with their wheels, and she realized that she can do that too. So this year was a lot more chilled out, Leah was doing her thing, I got to talk to other parents and have some fun of my own.
Speaking of the event, last year was much better attended, almost double what we got this year. There are lots of other families here in town and these events for us are always a great way to connect with each other. It has gotten me thinking about how to better market the SB events locally, how to get each other more connected, and how to get people to come in person. Anyone who has great ideas, please let me know!
We celebrated Easter last weekend with brunch, church, dinner, and Easter egg hunts. Leah had a really fun time getting an Easter basket and filling it with all kids of goodies, especially M&M's. They are her favorite! This weekend has been rainy and thunderstormy. I love it! It means that spring is here and pretty soon I'll be planting flowers and having lots of outside time. Leah absolutely loves being outside (or out-a-side, as she says), and we have had some nice walks outside. She's been liking being in my back-carrier lately, which I also enjoy to get some extra exercise. The challenge we are going to have now is that she wants to be very independent but that doesn't leave her much that she can actually do. She can roll around on our driveway and we have a few toys for her like a basketball hoop. Bubbles are a big hit too, and now we need to find enough things that will keep her entertained outside. I wonder what an obstacle course would look like in our backyard? Might be a nice thing for us to work on over the next couple weekend.
Speaking of the event, last year was much better attended, almost double what we got this year. There are lots of other families here in town and these events for us are always a great way to connect with each other. It has gotten me thinking about how to better market the SB events locally, how to get each other more connected, and how to get people to come in person. Anyone who has great ideas, please let me know!
We celebrated Easter last weekend with brunch, church, dinner, and Easter egg hunts. Leah had a really fun time getting an Easter basket and filling it with all kids of goodies, especially M&M's. They are her favorite! This weekend has been rainy and thunderstormy. I love it! It means that spring is here and pretty soon I'll be planting flowers and having lots of outside time. Leah absolutely loves being outside (or out-a-side, as she says), and we have had some nice walks outside. She's been liking being in my back-carrier lately, which I also enjoy to get some extra exercise. The challenge we are going to have now is that she wants to be very independent but that doesn't leave her much that she can actually do. She can roll around on our driveway and we have a few toys for her like a basketball hoop. Bubbles are a big hit too, and now we need to find enough things that will keep her entertained outside. I wonder what an obstacle course would look like in our backyard? Might be a nice thing for us to work on over the next couple weekend.
Saturday, April 12, 2014
Family Vacation
We finally had a family vacation! It was a much needed break from the longest winter ever, and we also just needed some time away. We left on Sunday afternoon and came back Friday morning, the perfect amount of time away and then we were able to come back to a full weekend here in town. Our vacation was in Tampa where we rented a house across the street from the ocean, just south of Clearwater. Fun, fun week. We got to the house on Sunday afternoon, and Leah was obsessed with getting into the water. We had been talking about it for a while, so as soon as we unpacked we hit the beach. Except that we weren't there long. She did not like the ocean. Poor little girl, she was so excited and then the waves were too big, water too cold, and the experience was too much. As it turns out, the condo building next to us was kind enough to let us use their pool, which was much more her style (and mine too... all that sand, yuck!). We swam almost everyday, had activities in the morning and relaxing afternoons.
Some of our highlights include a trip to the Clearwater Marine Aquarium to visit Winter (of "Dolphin Tale" fame), the St. Petersburg Children's Museum, and a dolphin-watching boat ride in Tampa Bay. And we also got to see my best friend Audrey and her husband John for dinner. Leah was a little disappointed that Audrey's baby is still in Audrey's tummy and she couldn't see the baby in person. Soon enough!
I loved seeing Winter the dolphin. Ty and I saw the movie "Dolphin Tale" when I was pregnant with Leah. The movie centers around Winter, a dolphin who loses part of her tail and becomes an amputee. She gets a new prosthetic tail and becomes an inspiration for people with physical disabilities - including veterans and parents of little girls with Spina Bifida. It was a really touching movie and ever since, I have been really touched inspired by her. So seeing her in person was pretty amazing. Leah and Ty had watched the movie and she knows that Winter has to wear a brace on her tail. We got there when it was pretty quiet because there was a sting-ray feeding at another exhibit, so we had some time up by Winter's pool by ourselves. The volunteers were amazing and came over to talk to us (Leah was in her wheelchair), and even let us hold her prosthetic tail. Then we got to watch Winter's exercising time. We saw the trainers put on her tail - that she doesn't wear all the time, only for a little bit of time a day - and Leah talked about how she wears braces too and goes to exercising too. What a really special moment. You can see all about Winter at http://www.seewinter.com/.
We also had a great time going on the dolphin boat ride. Leah actually really liked it and she pointed out all the dolphins we saw. She thought it was fun to see them swim in the water and blow air out of their spouts. She was calling the dolphins, "come here!" and "dolphins, where are you?" Well, I should say she was yelling at them. I hope the other passengers thought it was as funny as we did. The Children's Museum was awesome too. It had lots of exhibits, like a grocery store, fire truck, vet clinic, doctor's office, and climbing wall. There were lots of other kids her age there and she had just as much fun seeing them as she did playing. I think her favorite part of the trip was going to the bird sanctuary up the street from our house. There were lots of birds and she liked seeing them really close. She kept pointing at "this guy" and "that guy." Due to the high bird traffic areas, that was not a wheelchair destination, but most of the others were.
Leah was pretty much an awesome little traveler. She did really well on the plane ride down to Tampa, which is about 2 1/2 hours from here. She played with her toys, ate snacks and had a short nap. Couldn't have asked for anything better. We brought her wheelchair for her to use when we were outside and her zippa for in the house. It's definitely different taking a child on vacation, and especially one who has lots of equipment. We were able to stuff the zippa into a duffel bag, and then Leah used her wheelchair through the airport. I don't know what I expect when we're out in public with her, but gosh we get a lot of stares. Mostly people are really nice and a surprising number of people stop and say hello or comment on her chair. Kids especially stare, which doesn't really bother me at all... they are curious and most kids haven't seen a kid in a chair before. What bothers me more than anything is thinking about how we're going to handle these kinds of trips when she gets older. Right now she's small enough that we can carry her when we can't bring the wheelchair, like on the boat. But what happens when she's 7 or 8 and she wants to go on a boat ride? The boat we were on would be really hard for someone in a chair. Ty and I also like to walk everywhere and we can go 1-2 miles just to get to dinner. Again, that might not be practical for us to when she's old enough that she doesn't want to be in the stroller. She's already getting to the point where she wants out of the stroller if we go into a store because she wants to check everything out, see who's there, what's going on. I want a stroller/wheelchair combo for a little older kid. Engineers out there, please get going on that! We also may have to adjust the type of vacations we go on as she gets older. As she grows up, it becomes more and more apparent that the world is made for 2 feet, not 4 wheels, and that is sometimes a hard reality to face.
Thankfully, we were still able to have an amazing vacation. All in all, beautiful weather, lazy days and a great trip away.
Here are a few pictures of our family fun!
Some of our highlights include a trip to the Clearwater Marine Aquarium to visit Winter (of "Dolphin Tale" fame), the St. Petersburg Children's Museum, and a dolphin-watching boat ride in Tampa Bay. And we also got to see my best friend Audrey and her husband John for dinner. Leah was a little disappointed that Audrey's baby is still in Audrey's tummy and she couldn't see the baby in person. Soon enough!
I loved seeing Winter the dolphin. Ty and I saw the movie "Dolphin Tale" when I was pregnant with Leah. The movie centers around Winter, a dolphin who loses part of her tail and becomes an amputee. She gets a new prosthetic tail and becomes an inspiration for people with physical disabilities - including veterans and parents of little girls with Spina Bifida. It was a really touching movie and ever since, I have been really touched inspired by her. So seeing her in person was pretty amazing. Leah and Ty had watched the movie and she knows that Winter has to wear a brace on her tail. We got there when it was pretty quiet because there was a sting-ray feeding at another exhibit, so we had some time up by Winter's pool by ourselves. The volunteers were amazing and came over to talk to us (Leah was in her wheelchair), and even let us hold her prosthetic tail. Then we got to watch Winter's exercising time. We saw the trainers put on her tail - that she doesn't wear all the time, only for a little bit of time a day - and Leah talked about how she wears braces too and goes to exercising too. What a really special moment. You can see all about Winter at http://www.seewinter.com/.
We also had a great time going on the dolphin boat ride. Leah actually really liked it and she pointed out all the dolphins we saw. She thought it was fun to see them swim in the water and blow air out of their spouts. She was calling the dolphins, "come here!" and "dolphins, where are you?" Well, I should say she was yelling at them. I hope the other passengers thought it was as funny as we did. The Children's Museum was awesome too. It had lots of exhibits, like a grocery store, fire truck, vet clinic, doctor's office, and climbing wall. There were lots of other kids her age there and she had just as much fun seeing them as she did playing. I think her favorite part of the trip was going to the bird sanctuary up the street from our house. There were lots of birds and she liked seeing them really close. She kept pointing at "this guy" and "that guy." Due to the high bird traffic areas, that was not a wheelchair destination, but most of the others were.
Leah was pretty much an awesome little traveler. She did really well on the plane ride down to Tampa, which is about 2 1/2 hours from here. She played with her toys, ate snacks and had a short nap. Couldn't have asked for anything better. We brought her wheelchair for her to use when we were outside and her zippa for in the house. It's definitely different taking a child on vacation, and especially one who has lots of equipment. We were able to stuff the zippa into a duffel bag, and then Leah used her wheelchair through the airport. I don't know what I expect when we're out in public with her, but gosh we get a lot of stares. Mostly people are really nice and a surprising number of people stop and say hello or comment on her chair. Kids especially stare, which doesn't really bother me at all... they are curious and most kids haven't seen a kid in a chair before. What bothers me more than anything is thinking about how we're going to handle these kinds of trips when she gets older. Right now she's small enough that we can carry her when we can't bring the wheelchair, like on the boat. But what happens when she's 7 or 8 and she wants to go on a boat ride? The boat we were on would be really hard for someone in a chair. Ty and I also like to walk everywhere and we can go 1-2 miles just to get to dinner. Again, that might not be practical for us to when she's old enough that she doesn't want to be in the stroller. She's already getting to the point where she wants out of the stroller if we go into a store because she wants to check everything out, see who's there, what's going on. I want a stroller/wheelchair combo for a little older kid. Engineers out there, please get going on that! We also may have to adjust the type of vacations we go on as she gets older. As she grows up, it becomes more and more apparent that the world is made for 2 feet, not 4 wheels, and that is sometimes a hard reality to face.
Thankfully, we were still able to have an amazing vacation. All in all, beautiful weather, lazy days and a great trip away.
Here are a few pictures of our family fun!
 |
| Leah seeing the picture of Winter |
 |
| And then Winter in person |
 |
| You can see her tail is missing |
 |
| Here we are with one of her braces |
 |
| Winter having exercising time with her teacher, just like Leah does! |
 |
| Fireman Leah, looking like Uncle Dan! |
 |
| Pointing to the birds at the sanctuary |
 |
| Boat ride looking for dolphins |
 |
| Having so much fun! |
Tuesday, March 25, 2014
Leah Walked
As I mentioned in an earlier post, Leah has been walking at physical therapy. It takes quite a bit of energy and support, as she needs to be in her HKAFO's, then harnessed in, and strapped to the gait trainer. Then her therapist manually moves her legs in a walking motion. But she does it and she's been talking about it. The other day she told me that she wants to walk. So when we got to PT, she asked her therapist, "Leah walk please." Our goal is to get to a point where she can try it without her HKAFO's to see if she's able to do any of the movements herself. We know that she is able to move her hips, and we see a slight movement through her upper right leg. All she needs is a little bit of strength and then her hips and abs can do a lot of the rest. Here are a few pictures of her in the gait trainer.
Thursday, March 20, 2014
Kindness
I love reading about random acts of kindness. Sometimes I even do them myself, though not as often as I should. I love reading about people going out of their way for someone else, especially if that "someone else" is a little kid... and even more especially if that kid is like my kid. My kid, the one who has a disability. It doesn't matter if it's Spina Bifida or Downs Syndrome or autism. There's a special place in my heart for people for people like this guy on the video here. I ran across this story from the Special Needs spotlight blog (the same one that featured Leah last summer). It's a story about a little boy who has autism and loves the garbage man. Watch, enjoy and just try not to shed a few tears. Kindness... pass it on!
Thursday, March 6, 2014
Translate That
Leah is becoming quite the talker lately and it's really fun listening to what she has to say. I can understand pretty much everything that she says, though there are a few times when I'm not quite sure what she's talking about. It's ok, she corrects me or points to what she wants or uses a few signs. Here are a few of the things she's been talking about lately:
"No mama sing ABC. Leah sing ABC self. ABCDFG..." - This is pretty clear. She doesn't want me to sing the ABC song, she wants to do it herself.
"Doh, Leah, doh!!" - This is her way of saying "Go, Leah, Go!" which she yells when she's going full-speed in her zippa.
"Nonna baby! Hug baby. Baby sit. Baby drink milk bobby." - Leah's old teacher, Donna, who left to help babysit her grandbabies, brought one of the babies to visit Leah's class a few weeks ago (yes, she's still talking about it). Leah hugged the baby and held the baby in her lap. The baby drank milk from his bottle.
"Airplane! Babies, baby momma, baby dada. See mama-mama, papa." - She loves finding airplanes while we're driving. I don't know how she does it but she can spot them as teeny-tiny specks in the sky. There are babies on the airplanes with their moms and dads, and they're going to visit their grandmas and grandpas.
"Leah Gigi-minnah Semeesemenes." - This is Leah's full name. She can say her first name. Her middle name is Jillian, and she says it the way she says our cat's name (whose name is Jill, and who she calls Jilly-Minnah (which is her word for cat, or meow) but Gigi is how she pronounces Jill). Whew, did you catch all that?? And our last name ends up having about 8 syllables. But it's just about the cutest thing I've ever heard.
"Happy momma home." - Does this need any explanation?
"No mama sing ABC. Leah sing ABC self. ABCDFG..." - This is pretty clear. She doesn't want me to sing the ABC song, she wants to do it herself.
"Doh, Leah, doh!!" - This is her way of saying "Go, Leah, Go!" which she yells when she's going full-speed in her zippa.
"Nonna baby! Hug baby. Baby sit. Baby drink milk bobby." - Leah's old teacher, Donna, who left to help babysit her grandbabies, brought one of the babies to visit Leah's class a few weeks ago (yes, she's still talking about it). Leah hugged the baby and held the baby in her lap. The baby drank milk from his bottle.
"Airplane! Babies, baby momma, baby dada. See mama-mama, papa." - She loves finding airplanes while we're driving. I don't know how she does it but she can spot them as teeny-tiny specks in the sky. There are babies on the airplanes with their moms and dads, and they're going to visit their grandmas and grandpas.
"Leah Gigi-minnah Semeesemenes." - This is Leah's full name. She can say her first name. Her middle name is Jillian, and she says it the way she says our cat's name (whose name is Jill, and who she calls Jilly-Minnah (which is her word for cat, or meow) but Gigi is how she pronounces Jill). Whew, did you catch all that?? And our last name ends up having about 8 syllables. But it's just about the cutest thing I've ever heard.
"Happy momma home." - Does this need any explanation?
Friday, February 28, 2014
Mobility
There is quite a lot happening in Leah’s world these days from a physical/mobility standpoint. She is back in Physical Therapy for weekly appointments after taking a break since August. We decided to switch clinics this time, and I’m really happy that we made the move. We are now going to Gillette for PT, and I had heard really great things about them from other SB families. It seems like they are much more familiar with SB than we experienced with Children’s, at least with the therapist we had. They also have a great facility and in the 2 visits we’ve had, I am very impressed.
2 weeks ago we had an evaluation with a therapist, who measured Leah’s feet to see how flexible they are. Her left foot is very loose but her right is tighter and can just barely made a 90-degree angle. We need to get her feet into AFO’s for longer periods of time now to give her feet and ankles a nice stretch. We talked about the goals I have for her, which are to be able to sit independently and also to get her to walk, and how we are going to use the PT to achieve those goals. Her therapist was really knowledgeable about SB (and actually sees a little boy with SB!), and that makes me feel confident that she’s going to help Leah. We agreed on weekly appointments for the next 10 weeks, and I’m really excited to see how things progress.
Let’s talk about our goals… On the sitting, she cannot sit up by herself. This is something that has been a bit disappointing for me. I thought it would come easier for her and that she’d be able to do it better than she can today. She does sit nicely but she needs her hands on her legs or to be sitting up against something for support. It makes it challenging for her at school or at home when she’s trying to play on the floor. At school her primary transportation is her big wheelchair, and it’s not easy for her to get toys off the floor or sit with the other kids at group time. She has a corner chair that she can sit in, which is flat on the floor and 2 little walls behind her. It gives her the support she needs to be on the ground, but it buckles her in so she’s confined to it. There aren’t always enough teachers for her to sit on someone’s lap, so it is really important that she can sit up on her own, if at least for just a couple minutes at a time. Our other goal is to get her walking. Now I recognize that this is something that will take lots of time, practice, energy, and most of all, willingness from Leah to be able to do this. It’s going to be hard! She will need a lot of support from her braces and great upper body strength to do it. I think she can! I think she wants to. I want to give her the opportunity to try it, and if she chooses that it’s not for her, then at least we gave her that chance. At least it will be her that decides that. There will probably be a time when she chooses her wheels over her legs, and that’s ok. There are times, though, when wheels are going to be difficult, so I want her to be able to do things like getting on and off an airplane, transferring to the couch, or not being confined to a chair when she’s visiting someone who’s house isn’t accessible.
At our first “real” appointment this week, we worked on both sitting and walking. For sitting, we had Leah reach for puzzle pieces and throw frogs into a bucket. She had fun and got her to reach with both hands. Some of it for her is having the confidence that she can do it, and then gradually building up the strength. Again, I think a couple minutes is realistic at this point. Then she walked. Now, this was a pretty big production! But she did it. She got into her HKAFO’s, then strapped into a harness, then we buckled her into an overhead contraption so she was standing up all by herself. We put her on a treadmill and the therapist turned it on really slowly, and she took Leah’s legs and walked them on the treadmill. She seemed to really enjoy it, but mostly because I was blowing bubbles at her. I can’t figure out if she really knew what was going on, but afterwards she said “Leah walked. Mama watched.” Next week we’re going to try doing the same thing just without her HKAFO’s on to see if she’ll do any of the movements on her own. She’s still doing swimming lessons, and I asked her instructor to get her to start kicking her legs in the water. It’s all about building muscle strength and control in her legs.
Then, finally, we saw her cranial-sacral therapist. This was the first time we’d gone 3 months in between visits, but we’re going to go back to every 8 weeks because that was just a little bit too long. When we were in the car on the way there, Leah kept saying “owwie back” so I told her that her therapist might help make it feel better. She started out on Leah's back and could tell why she was in pain… her right and left sides were totally out of alignment. Her lower back and pelvic muscles are very weak, and she’s gone through a pretty big growth spurt over the last couple weeks, and her body hasn’t been able to keep up with it. She gave us a few suggestions of different exercises to do with Leah to strengthen that part of her body. First, we need to get her up into a crawling position on her hands and knees. For “typical” kids, getting up on all 4’s gives the spine a nice curve. Leah’s spine is really curved through her lumbar but then starts straightens out towards her neck. When we got her up in that position, she was really unstable and I could see how weak her lower back actually is. She overcompensates by having incredible strength in her upper body and arms. Now we need to balance that out. Since she never learned to crawl, she also missed out on the cross-brain activity that comes with crawling. The motion of left arm/right leg engages both sides of the brain, which we now need to simulate for her. By moving her body for her, she will still get that benefit, and then maybe she’ll be able learn to do some of that on her own. Wow, I never knew any of that. It’s just one of the many reasons I love her therapist and feel beyond blessed that we have her.
We still have a lot of work to do with her. We want to be able to give her every opportunity to help her figure out how to use her body and simulate some of those things for her. Eventually maybe she’ll be able to make those connections for herself. We hope!
Sunday, January 26, 2014
Family Photo Shoot
Here are some beautiful pictures that we had taken of our family back in November.
Tuesday, January 21, 2014
What is there to say?
I continue to be thankful at how little I have to post about Leah's spina bifida. The couple appointments that we've had this month have been Early Intervention from the school district and swimming lessons. EI's assessment continues to be that Leah is right at her age for all of her developmental milestones, with the exception of gross motor skills. She's talking in 2-3 word sentences, she's picking up new words everyday, and her fine motor skills are above average. Even though she's not walking, she is mobile in her own way. She uses her zip-zac all over the house and at the random Barnes'n'Noble or coffee shop outings, and she uses her wheelchair at school and when we let her have mobility out in public. She's getting so much better in her chair, so we've taken it out much more often. Since she's still a toddler, sometimes I put her in the shopping cart or stroller to do errands.
She also is doing swimming twice a week, which is awesome! Tuesdays are 1/2 hour one-on-one lessons with an instructor. They work on her core strength and also to get her to learn how to swim. She's gone from hating the lessons and crying the entire time to reaching for her teacher every week. Saturday mornings she does aqua baby class with either mom or day. That is really fun!! We float around the pool and sing songs and she mostly points to the other babies, the baby mamas and baby daddies. We do swimming at a place about 20 minutes away that specializes in rehabilitation services for people of all ages. There are a lot of other kids who use their services for adaptive swimming lessons with a variety of disabilities. They also have lots of other adaptive sports, including skiing, wheelchair basketball, softball, and other sports she'll be able to play as she gets older. On Saturday mornings they have wheelchair basketball practice and she likes watching the big kids play. Soon that will be her!
We also took her ice skating! We got her in her mobile stander and put her out on the ice, and she went to town. The biggest accomplishment was getting her to keep her gloves on her hands! Now I very much dislike the winter and the cold, but at least this is something that gets us out of the house, and she sleeps really, really well after being outside. On second thought, this is a great activity for Leah and Daddy to give me a little break. That's about all there is to say for now. I have a few pictures to share so check back another time. I have a little girl who needs a bath!
She also is doing swimming twice a week, which is awesome! Tuesdays are 1/2 hour one-on-one lessons with an instructor. They work on her core strength and also to get her to learn how to swim. She's gone from hating the lessons and crying the entire time to reaching for her teacher every week. Saturday mornings she does aqua baby class with either mom or day. That is really fun!! We float around the pool and sing songs and she mostly points to the other babies, the baby mamas and baby daddies. We do swimming at a place about 20 minutes away that specializes in rehabilitation services for people of all ages. There are a lot of other kids who use their services for adaptive swimming lessons with a variety of disabilities. They also have lots of other adaptive sports, including skiing, wheelchair basketball, softball, and other sports she'll be able to play as she gets older. On Saturday mornings they have wheelchair basketball practice and she likes watching the big kids play. Soon that will be her!
We also took her ice skating! We got her in her mobile stander and put her out on the ice, and she went to town. The biggest accomplishment was getting her to keep her gloves on her hands! Now I very much dislike the winter and the cold, but at least this is something that gets us out of the house, and she sleeps really, really well after being outside. On second thought, this is a great activity for Leah and Daddy to give me a little break. That's about all there is to say for now. I have a few pictures to share so check back another time. I have a little girl who needs a bath!
Saturday, January 4, 2014
Spina Bifida Update
Thankfully there's not a ton going on with her that's SB related these days, but since I haven't said much about it lately, and since my blog is about her SB, here we go....
The biggest news is that we picked up her Hip-Knee-Ankle-Foot Orthotics right before Christmas. Ty took her to the orthotics company for a 3-hour appointment. Yes, it took about 3 hours! Even though Leah was casted for them, once she got the HKAFO's on, there were still tweaks to be made. She'd get them on, the orthotics rep made a few marks, and then took them off to make the changes. Ty and Leah got lots of breaks, one that was 45 minutes and ended up with the two of them picking out a dozen cupcakes, but that story is for another time! The HKAFO's are the same plastic material as her AFO's, but they go all the way up her legs to her hips, and then there is a back brace that goes about half-way up her back. They should grow with her but only for a few more inches.
The reason we got this is for her to learn how to walk. She doesn't have any muscle tone below her hips, so she cannot stand without support. Some kids have muscle tone down to their knees or even lower, but Leah needs that support all the way up her leg. Even with the braces, she can't stand on her own just yet. That's a skill that will eventually come but it's not there yet. In order for her to start walking, she'll first need to learn how to move her legs forward, and she'll need support on a walker to help her. She will figure out how it works best for her, whether it's shifting weight to one side and using her hip to pull the leg, or using her arms to hold her up on her walker and swinging both legs forward... or doing something that's completely her own way of doing things. Who knows! If she wants to walk, she'll find a way. If she doesn't, that's totally fine with us too. We are going to give her the opportunity to decide if it's right for her and support her through it and then let her decide how she prefers to get around. Either way, being in a standing frame will continue to build strong muscles in her arms and her legs, which is always a good thing!
The other thing we're working on from a physical standpoint is figuring out how to get her on and off the couch, in and out of her new little chair and her zip-zac and eventually her wheelchair. She is incredibly strong in her arms and back and abs... like the girl can almost do a chin-up with no help from us! But she's also lugging around dead weight in her legs since they offer her no support. She can get off the couch if there's a pillow for her to climb onto; she falls out of the zip-zac (sometimes on purpose, sometimes not), and out of her foam chair. But she can't get back in, and her favorite game now is "up" where mommy puts her back up on the couch to watch her climb down. She might just need a little time to get taller so she can reach the couch but we're also trying to figure out how teach her to do it herself.
Then there's the business of potty training. 2 of my nephews are in the process of being potty trained, something we watched while we were back home for Christmas. The constant asking if they have to go potty, reminders not to go potty on the carpet, and rewards for being dry all night... something I would be dreading now as Leah is turning 2 if she were "normal" but she's not and it makes me a little bit sad that we have to be different. When I started learning about all the things in the SB world, this "bathroom business" stressed me out the most. It still does. Shunts are annoying because they sometimes fail and HELLO! it's brain surgery! Wheelchairs are also annoying and having to carry her all the time is hard... but dammit why can't she just go to the bathroom like everyone else!?!?? We have been so fortunate for the last 2 years that we don't use catheters for peeing, and she's never had a problem with constipation... both things that are very common. Since it's been so easy, I'm afraid we're in for a real treat when we do start.
This is also the area that gives me the most pause about sharing. I will try to balance the fact that we're open with Leah's SB and everything that comes along with that, and the fact that this is a very private thing for her, and she may not want everyone knowing how she does her business because OH MY GOODNESS if my mom shared that with the world, I would have been mortified!! So, for now, what I'll say is that today she's just like any other 2-year old in diapers. By the time she gets to kindergarten, she'll be out of diapers. How we get there, I sure as heck don't know, and I'm not sure how much you'll all know either. I'll share when I think it's appropriate and won't when it's not. And I'll ask for a lot of forgiveness from my pre-teen in a few years!
The biggest news is that we picked up her Hip-Knee-Ankle-Foot Orthotics right before Christmas. Ty took her to the orthotics company for a 3-hour appointment. Yes, it took about 3 hours! Even though Leah was casted for them, once she got the HKAFO's on, there were still tweaks to be made. She'd get them on, the orthotics rep made a few marks, and then took them off to make the changes. Ty and Leah got lots of breaks, one that was 45 minutes and ended up with the two of them picking out a dozen cupcakes, but that story is for another time! The HKAFO's are the same plastic material as her AFO's, but they go all the way up her legs to her hips, and then there is a back brace that goes about half-way up her back. They should grow with her but only for a few more inches.
The reason we got this is for her to learn how to walk. She doesn't have any muscle tone below her hips, so she cannot stand without support. Some kids have muscle tone down to their knees or even lower, but Leah needs that support all the way up her leg. Even with the braces, she can't stand on her own just yet. That's a skill that will eventually come but it's not there yet. In order for her to start walking, she'll first need to learn how to move her legs forward, and she'll need support on a walker to help her. She will figure out how it works best for her, whether it's shifting weight to one side and using her hip to pull the leg, or using her arms to hold her up on her walker and swinging both legs forward... or doing something that's completely her own way of doing things. Who knows! If she wants to walk, she'll find a way. If she doesn't, that's totally fine with us too. We are going to give her the opportunity to decide if it's right for her and support her through it and then let her decide how she prefers to get around. Either way, being in a standing frame will continue to build strong muscles in her arms and her legs, which is always a good thing!
The other thing we're working on from a physical standpoint is figuring out how to get her on and off the couch, in and out of her new little chair and her zip-zac and eventually her wheelchair. She is incredibly strong in her arms and back and abs... like the girl can almost do a chin-up with no help from us! But she's also lugging around dead weight in her legs since they offer her no support. She can get off the couch if there's a pillow for her to climb onto; she falls out of the zip-zac (sometimes on purpose, sometimes not), and out of her foam chair. But she can't get back in, and her favorite game now is "up" where mommy puts her back up on the couch to watch her climb down. She might just need a little time to get taller so she can reach the couch but we're also trying to figure out how teach her to do it herself.
Then there's the business of potty training. 2 of my nephews are in the process of being potty trained, something we watched while we were back home for Christmas. The constant asking if they have to go potty, reminders not to go potty on the carpet, and rewards for being dry all night... something I would be dreading now as Leah is turning 2 if she were "normal" but she's not and it makes me a little bit sad that we have to be different. When I started learning about all the things in the SB world, this "bathroom business" stressed me out the most. It still does. Shunts are annoying because they sometimes fail and HELLO! it's brain surgery! Wheelchairs are also annoying and having to carry her all the time is hard... but dammit why can't she just go to the bathroom like everyone else!?!?? We have been so fortunate for the last 2 years that we don't use catheters for peeing, and she's never had a problem with constipation... both things that are very common. Since it's been so easy, I'm afraid we're in for a real treat when we do start.
This is also the area that gives me the most pause about sharing. I will try to balance the fact that we're open with Leah's SB and everything that comes along with that, and the fact that this is a very private thing for her, and she may not want everyone knowing how she does her business because OH MY GOODNESS if my mom shared that with the world, I would have been mortified!! So, for now, what I'll say is that today she's just like any other 2-year old in diapers. By the time she gets to kindergarten, she'll be out of diapers. How we get there, I sure as heck don't know, and I'm not sure how much you'll all know either. I'll share when I think it's appropriate and won't when it's not. And I'll ask for a lot of forgiveness from my pre-teen in a few years!
Subscribe to:
Posts (Atom)