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 20, 2014
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!
Sunday, December 29, 2013
Home for the Holidays
We spent the Christmas holiday in my hometown this year, the first time I'd been back for Christmas in 4 years!! It was long overdue. Leah and I drove down last Saturday with my mom, who had flown up on a 1-way ticket to ride with us, and Ty flew down on Monday. Then we drove back to Minnesota on Saturday. It was an action-packed and exhausting week with the family, exactly as I thought it would be. The 5 grandkids spent a lot of time together, and Leah had a blast. On Sunday they decorated gingerbread houses, which was hilarious. All the boys were pouring sprinkles and gobs of frosting on their houses, while Leah was picking up 1 sprinkle at a time. She got a tiny bit of frosting on her finger and whined for me to wipe it off, while the boys were eating frosting and sprinkles by the spoonful! She also helped my mom, sister and I frost Christmas cookies on Monday afternoon. Again, she was so dainty, just barely dipping her little knife into the frosting bowl and gently putting it on her cookie. Such a sweet girl!
One of the nights we went with my brother, sister-in-law and their 2 kids to the Festival of Lights, which is a 3-mile drive in a park that has lots of Christmas lights. My mom, dad, sister, Leah, and I all piled into the minivan, and met them at a parking lot a few blocks away. Then they all came in with us so we could enjoy the lights together (and save on the $10/car fee... like a bunch of teenagers sneaking into a drive-in movie theater). Leah loved looking at all the lights, but mostly she thought it was so fun to sit on mommy's lap in the car! We also drove around town to see a few houses that were very, very decorated with lights. Christmas Eve was celebrated with church service and dinner with my mom's side of the family. Christmas Day was spent with a relaxing morning of opening presents, visiting with my dad's side of the family at my grandma's house, and then having dinner with my brothers, sister and their families. Whew! Insert the same crazy schedule for all of the 5 kids and it's enough to ensure a meltdown will occur (and a few did!!), but that's the fun of the holidays.
The best part was watching Leah play with her cousins. Bailey is not quite 5, Shane just turned 3, Drew is exactly 6 months older, and Colin is almost exactly 7 months younger. They were all so happy to have Leah around, hugging her and sitting down with her. She spent a lot of time in her rolling stander while we were there, which put her right at eye level with all of them. She was right in the action most of the time too, and even got a little bit rowdy with them! Shane even told his daycare teacher that "my cousin Leah is so pretty and uses her wheelchair to dance!" It's just so normal to them that she's in a chair, and didn't matter to them at all. It's important that she has people in her life who will accept her for who she is and include her (or exclude her because she's a girl, just like my brothers did to me) in their fun. My brothers were joking that she'll never get picked on when she's around those boys. The youngest 3 are very big for their age, and will be quite protective of her. It made me laugh when they said they wanted someone to say something about her just to watch her cousins stand up for her. Haha! Yes, watch out. You do not want to mess with the Cunningham boys!
My oldest and bestest friend also came to town at the end of my trip. It's really comforting having a friend who's known my more than half my life (we met almost 20 years ago... eek!!!), and even though we may not see each other or even talk often, we can still talk for hours as if no time has ever passed. It was a great way to finish out the week.
Then we were back in Minnesota and unpacking a carload of toys and suitcases and Leah's equipment. We took her zip-zac because it's her primary means of transportation in the house; we took her rolling stander because I knew she'd enjoy being up at eye-level with her cousins, and I was right because she spent over an hour in it several days; and we took her brand new Hip-Knee-Ankle-Foot Orthotics that we had just picked up (another post about that later) so she could get some practice with it and because it hardly took up any room. We each had a suitcase and backpack, Ty had a workout bag and strapped his bicycle to the back, plus bags of presents, and her new foam chair, and finally a cooler and snacks for the drive. You'd think we were going on a cross-country road trip for a month! Ridiculous, yes but everything was necessary. So different than the 2 of us jumping in the car with a suitcase each and maybe a bottle of water. I think we spent more time packing and loading the car than we did actually traveling!
Leah did absolutely amazing in the car. I could not believe it. Before Leah, I could get there in 6:45 with 1 stop. We stopped 3 times on the way down, one of them for about 20 minutes to sit down and eat lunch, and clocked in at 7:20. Coming home we only stopped once to do a bathroom break and get gas, and made it in under 7. Thanks to this awesome technology called portable DVD player, she kept very occupied. That and having a back-seat companion to keep her company and lots of snacks made for a smooth ride. I don't think I could do that drive with her on my own just yet, as she did get whiny at times and she's not very good at eating in the car yet (I still have to hand her things one at a time because she'll either shove everything into her mouth at once or throw it all on the floor), but maybe by the time she's closer to 3, she'll do better in the backseat by herself. Now that she's no longer free on the airplane, I'll have to eventually make that trip alone.
Thankfully we'll have a pretty slow work week here with New Year's Day falling right in the middle of the week. That's good because January is going to start off with a bang for us. Ty will be traveling a little more in his job that he's been doing recently. Then with Leah getting her new HKAFO's I want to get her back into PT in addition to the swim therapy she'll continue doing. I think she has the will and the mind to be able to walk, and I'd love to see her get there. I'm trying not to get my hopes up too high because it will be a long and slow road to get there. She needs some pushing. She's tough and stubborn and surprises us everyday!
I hope everyone out there had a very happy holiday, no matter what you celebrate!
One of the nights we went with my brother, sister-in-law and their 2 kids to the Festival of Lights, which is a 3-mile drive in a park that has lots of Christmas lights. My mom, dad, sister, Leah, and I all piled into the minivan, and met them at a parking lot a few blocks away. Then they all came in with us so we could enjoy the lights together (and save on the $10/car fee... like a bunch of teenagers sneaking into a drive-in movie theater). Leah loved looking at all the lights, but mostly she thought it was so fun to sit on mommy's lap in the car! We also drove around town to see a few houses that were very, very decorated with lights. Christmas Eve was celebrated with church service and dinner with my mom's side of the family. Christmas Day was spent with a relaxing morning of opening presents, visiting with my dad's side of the family at my grandma's house, and then having dinner with my brothers, sister and their families. Whew! Insert the same crazy schedule for all of the 5 kids and it's enough to ensure a meltdown will occur (and a few did!!), but that's the fun of the holidays.
The best part was watching Leah play with her cousins. Bailey is not quite 5, Shane just turned 3, Drew is exactly 6 months older, and Colin is almost exactly 7 months younger. They were all so happy to have Leah around, hugging her and sitting down with her. She spent a lot of time in her rolling stander while we were there, which put her right at eye level with all of them. She was right in the action most of the time too, and even got a little bit rowdy with them! Shane even told his daycare teacher that "my cousin Leah is so pretty and uses her wheelchair to dance!" It's just so normal to them that she's in a chair, and didn't matter to them at all. It's important that she has people in her life who will accept her for who she is and include her (or exclude her because she's a girl, just like my brothers did to me) in their fun. My brothers were joking that she'll never get picked on when she's around those boys. The youngest 3 are very big for their age, and will be quite protective of her. It made me laugh when they said they wanted someone to say something about her just to watch her cousins stand up for her. Haha! Yes, watch out. You do not want to mess with the Cunningham boys!
My oldest and bestest friend also came to town at the end of my trip. It's really comforting having a friend who's known my more than half my life (we met almost 20 years ago... eek!!!), and even though we may not see each other or even talk often, we can still talk for hours as if no time has ever passed. It was a great way to finish out the week.
Then we were back in Minnesota and unpacking a carload of toys and suitcases and Leah's equipment. We took her zip-zac because it's her primary means of transportation in the house; we took her rolling stander because I knew she'd enjoy being up at eye-level with her cousins, and I was right because she spent over an hour in it several days; and we took her brand new Hip-Knee-Ankle-Foot Orthotics that we had just picked up (another post about that later) so she could get some practice with it and because it hardly took up any room. We each had a suitcase and backpack, Ty had a workout bag and strapped his bicycle to the back, plus bags of presents, and her new foam chair, and finally a cooler and snacks for the drive. You'd think we were going on a cross-country road trip for a month! Ridiculous, yes but everything was necessary. So different than the 2 of us jumping in the car with a suitcase each and maybe a bottle of water. I think we spent more time packing and loading the car than we did actually traveling!
Leah did absolutely amazing in the car. I could not believe it. Before Leah, I could get there in 6:45 with 1 stop. We stopped 3 times on the way down, one of them for about 20 minutes to sit down and eat lunch, and clocked in at 7:20. Coming home we only stopped once to do a bathroom break and get gas, and made it in under 7. Thanks to this awesome technology called portable DVD player, she kept very occupied. That and having a back-seat companion to keep her company and lots of snacks made for a smooth ride. I don't think I could do that drive with her on my own just yet, as she did get whiny at times and she's not very good at eating in the car yet (I still have to hand her things one at a time because she'll either shove everything into her mouth at once or throw it all on the floor), but maybe by the time she's closer to 3, she'll do better in the backseat by herself. Now that she's no longer free on the airplane, I'll have to eventually make that trip alone.
Thankfully we'll have a pretty slow work week here with New Year's Day falling right in the middle of the week. That's good because January is going to start off with a bang for us. Ty will be traveling a little more in his job that he's been doing recently. Then with Leah getting her new HKAFO's I want to get her back into PT in addition to the swim therapy she'll continue doing. I think she has the will and the mind to be able to walk, and I'd love to see her get there. I'm trying not to get my hopes up too high because it will be a long and slow road to get there. She needs some pushing. She's tough and stubborn and surprises us everyday!
I hope everyone out there had a very happy holiday, no matter what you celebrate!
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