Working Hard

We are officially heading into our 6th month of winter here in Minnesota.  Yes, you heard me right… 6 months of winter!!  I heard on the radio this afternoon that we got our first measurable snowfall here on November 8 and we are expected to get a few inches tomorrow night into Wednesday.  I am so sick of winter!  They say that Minnesota has 2 seasons – winter and road construction.  Considering we’re having snow this week and the main street in our little town is closed for the next 3 weeks to install new sewer lines, I’d say that’s about right! 

Other than the winter that never ends, things are going pretty well around here.  I haven’t posted much because there hasn’t been much to report.  We had a very nice Easter, and Leah had a fun time collecting Easter eggs around the house.  I filled a few plastic eggs with Cheerios and puff snacks, and those kept her quite busy at church.  She has been having a lot of fun opening and closing the eggs, so I’ve kept those out.  And she looked so ridiculously cute in her little dress.  Having a girl is fun just because of the adorable clothes!

In the world of physical therapy, we are concentrating our efforts on getting her to learn how to turn her wheelchair.  We work on that in PT and also at home, and she’s starting to get it.  Just this morning she turned around with one hand and got herself unstuck from the kitchen cupboards.  We’ve also been using her stander, though not as much as we probably would should… but I think we’ll start using it more now that she really likes being in it.  The stander holds her upright with straps around her feet and knees, and then it has a vest that velcro’s around her tummy.  She really doesn’t like it, so don’t do the straps over her shoulders, but she still pulls at the ones across her chest.  So I figured I’d try standing her up without them altogether, and she did awesome.  She liked it so much more!  I have to wedge her between 2 ottomans so she doesn’t tip too far forward, and she still needs some of that support, but her upper body is really strong.  We’ve been playing catch with her new ball and she also loves playing with her toys while having a little more freedom with her arms and being upright.

Leah’s big girl wheelchair has been ordered, and the process will take 2-3 months for us to actually get it in our home.  We customized it for what we wanted and now it has to go to our PT doctor, then to insurance to process the claim, then back to the wheelchair company to actually make the chair for her.  We tested a chair for about a week and then the wheelchair company rep came out to ask what things we wanted on Leah’s chair.  As far as customization goes, we decided we probably didn’t need shoulder straps, so we got a belt to go around the waist and side bumpers to help with her balance.  All of these can be changed out if she needs more support or less, depending on her needs down the road.  Once she gets a little older, she may not need the side bumpers, so they can easily take those off.  Of course we had to pick out a fun color for the rails, and it will be a sparkly silver… subtle but still girly.  While I am very excited for this, it makes it very real that this will be her mode of transportation.  Back when we found out about Leah’s SB, I kept saying I could handle a physical disability… now that it’s here, it’s a little hard to see it in real life. 

As far as language skills goes, she still doesn’t have any real words, though she is getting better at doing a few signs.  She can say “more” and “all done” very well.  She knows please, thank you, milk and eat, but she’ll only do it when prompted.  She says mama, dada, na-na, baba and is starting to make lots of other sounds, but nothing is directed to anyone or anything in particular.  She does have lots of different expressions and makes all sorts of noises that I think mean, “oh my gosh what is that noise??!!” when she hears and airplane or train.  Then there’s the “kitty kitty kitty kitty come here right now so I can pet you” sound, and the ear-piercing screech when she doesn’t like something.  She is definitely communicating with us, just not with words, though I know that it will come soon.  It has to, they’re all right there on the tip of her tongue!

She is learning and changing so much.  It’s really fun to try and teach her new tricks because for now, she’ll actually do what we tell her.  I also love watching her work really hard, and she constantly amazes us with what she CAN do.  I’m so proud of her!

10,000 Visitors

Wow, I just noticed that we have had 10,000 visitors the blog! I can’t believe that so many people have read our story… though I’m pretty sure my mom counts as several hundred views herself. It feels like a big milestone to have reached so far and wide. I hope that we’ve been able to educate others about Spina Bifida and provide awareness to what this condition is. I also hope to show how much Leah CAN do and what happiness and joy she brings to our lives.

 

We have had a few interesting things happen lately. Last week Ty and I had a meeting with Leah’s daycare. Typically they move kids out of the infant room and into the toddler room around 16 months. With Leah they don’t see her having the mobility to move up yet. While we agree, it was a difficult thing to hear. My biggest concern is that she’ll get more proficient with her wheels and they will still hold her back because of their concern about her being in a chair. This week one of her teachers in the infant room asked what else they can do with her to keep her busy and engaged, so clearly she needs more stimulation. She also needs to be with her peers and keeping her with the infants doesn’t help with language or social skill. We agreed to reevaluate her in 2 months, at which point I hope she will be totally proficient with her wheels and can easily move to the toddler room. If not, then I think we need to look into another place that is more accommodating to children in wheelchairs. I hope it doesn’t come to that.

 

Earlier this week we got her test wheelchair. This is a standard chair, unlike her zip-zac, and we’ll have it for a few days to test it and see how we like it. She sits up much higher in this chair and it’s a lot bulkier than the zip-zac. It has the ability to expand and grow with her so she’ll have this chair until she’s about 5 years old. The other nice feature is that it has a handle so we can help steer her. The first thing I noticed when it came in the house was how dirty it got. The delivery guy rolled it through the garage and brought in lots of dirt and snow into the house. As soon as she touched the wheels her hands got dirty and she was pointing at me to clean them off. This will be interesting! It’s also going to be harder for her to get in and out of this on her own, as she’s buckled in with shoulder straps and a seatbelt around her waist.

 

Seeing this chair made everything very real to us. Both Ty and I have said that confirms that she will be a wheeler… not that we ever really thought she would walk, but it’s hard to kind of ignore that thought when there isn’t a huge wheelchair sitting in the middle of the kitchen. It means that pretty soon she’ll be wheeling around independently at the grocery store and at church, and opens up a whole new world to us that we don’t have to deal with today. Things like people asking us why she’s in a chair, or worse, just staring at us…. Dealing with rude or ignorant people… Having others see the wheelchair and the disability before seeing Leah…. Or just pretending she doesn’t even exist. I told Ty that I allow myself 5 minutes of feeling sorry for her and myself each day, so there’s my allotment for the day!

Girl Time!

It was about time that this mommy took a break from mommy-ing and spent some quality time with my girlfriends.  In the span of less than a week I was fortunate enough to see all of my favorite friends... I didn't even know that could be possible, especially since my 3 closest friends live across the country from me.  Last weekend my 2 college buddies came to Minneapolis for the weekend.  Jodi flew in from Washington, DC and Jordan flew in from Chicago.  We had a pretty relaxing weekend of shopping, getting our nails done, going to a movie, and eating out.  It was a far cry from our wilder days (one of us was even in bed by 10:00 each night... hint - it wasn't the mom), but we had so much fun catching up with each other.  Leah really enjoyed having the girls here in person since she looks at their picture all the time.  She especially loved having 2 new people to entertain her.  The time always goes by way too fast when we're together. 

Then last Monday it just so happened that my 4 friends from work were all able to meet up for lunch.  These 4 girls and I started working for the same department - in basically the same job - within a few months of each other.  We quickly became good friends, and saw each other through weddings, babies, deployments, new jobs and everything in between.  Now none of us are with that same department, 2 of them aren't even with the same company anymore, but we've managed to stay connected.  Thanks Amy, Sara, Jodi and Lisa for being awesome friends!

Finally, this past weekend I got to see my very dearest friend get married.  Audrey, my best friend from high school, married John in St. Petersburg, FL.  This was also my first time away from Leah, and I probably wouldn't have done it for anyone else but Auds!  It was a quick weekend, down on Friday and back on Sunday, but the weather in Florida was beautiful and it was a treat to have a quick getaway.  Getting 2 nights of uninterrupted sleep was a pretty nice bonus as well.  They had an outdoor wedding at the shuffleboard club, and we all had such a great time playing games and enjoying being outside.  Audrey looked beautiful and I was so fortunate to be part of her special day.  I truly would not have missed it for anything. 

Mommy Instinct

Things have been plugging away lately.  Last weekend we got together with one of our Spina Bifida family friends who have a daughter just a few months older than Leah.  They also have a 4-year boy and they are both such cute and fun kids.  We went over their house, and they had made this awesome sledding hill in their backyard... complete with curves and banks.  Ty convinced me to send Leah down the hill by herself, though it totally freaked me out to watch my tiny little peanut all alone, she clearly had a lot of fun!

Last Monday night I noticed something was off with her.  She was really cranky and she vomited all over when I was putting her to bed.  She threw up again - twice - on Wednesday night, so we called Dr. Marker to see what's up.  He wrote a prescription for an anti-nausea medicine thinking she has a stomach bug (that is apparently going around right now).  But that just didn't seem right.  I had noticed that she also kind of smelled funny and her pee stunk really bad.  After doing a little bit of google-diagnosing, it seemed like she had all the symptoms of a urinary tract infection.  Last summer Dr. Marker's nurse had sent us home with a few kits so we could take urine samples just for this reason.  I dropped off a sample last Thursday and just got the call this morning that she does have a UTI.  Ugh.  Now that she has an antibiotic, hopefully she'll start acting more like herself.  

Another Sunday Post

I just realized my last 2 blog posts were on Sunday and here comes another one.  I guess this is a good time to recap things going on in our lives.   This past week was quite eventful as we finally got to do her 1-year MRI, only 3 months later.  We had to cancel it in December and January because she was sick both times.  Since it's a sedated MRI, she has to be in good health and not have any respiratory issues going on.  She was finally healthy and we could get that taken care of.  The day started off with a 3" snowfall so traffic getting to the appointment was heavy and it took us much longer than normal... gotta love Minnesota winters!  Our appointment this time was not at the hospital but at an out-patient clinic near our home, so at least we didn't have to go all the way downtown. 

We got in and they took us back to her prep room right away.  She was in a really good mood and having fun playing with stickers.  The very nice nurse checked her out and had us sign paperwork, then Ty and I had to be wanded down to make sure we didn't have any metal devices on us.  At about 9:15 they took her into the room to get her started.  I was able to stay with her while they put her to sleep using a gas mask (yikes, that sounds scary), and she gave it a good fight for a couple minutes.  Then she drifted off and we were able to sit in the waiting room for the 2 hours it took to complete.  Her nurse came out a couple times to let us know she's doing great and then finally she was done around 11:45.

The MRI took images of her brain and full spine, from her neck all the way down to her tailbone.  It takes 2 hours because there are a lot of pictures they need to take.  She has to be sedated because it's a 2 hour scan and there's no way she'd sit still long enough to even have 1 picture taken.  Since she wasn't having surgery and just needed enough anesthesia to be still, she didn't need a full breathing tube and woke up from it very quickly.  About an hour after she woke up, we were on our way home. 

The reason we do this is for a baseline of how her spine and brain look today.  In a year if she's developing symptoms or if we're concerned about something, we can repeat the MRI and compare it with her 1-year scans to see if things have changed... instead of wondering what's normal for her and potentially doing a very serious surgery that didn't need to be done.  Since the MRI takes scans by magnet, we had to have Leah's shunt reset.  The programmable valve of her shunt is controlled by a magnet and there's always a chance it can get messed up when she's around a strong magnet, so we headed downtown to the neurosurgeon's office later in the afternoon.

We met with Pete, Dr. Nagib's assistant, who reprogrammed her shunt and showed us some initial pictures of Leah's scans.  We could see that her ventricles were significantly smaller than they were back in November when she had her shunt failure, and even 2 weeks later when we did a follow up scan.  That was really good news.  He showed us her brain and told us that her Chiari malformation was quite large (I'll explain more below) and something we may need to watch.  The rest of her spine looked really good and showed no signs of syrinx or tethered cord (again, will explain more).  So some really good news and some not so good news.

The Chiari malformation is very common for kids with SB, in fact almost all of them have it.  The Chiari affects the cerebellum, which is at the very base of the brain and controls functions like breathing, sucking, swallowing, and balance.  In a normal person this area is tucked neatly at the base of the skull.  In Leah, it's pulled down into her spine.  Normally there should be a gap between the cerebellum and the start of the spine, and in Leah it's nearly touching.  Hers is also nearly touching her skull, so her cerebellum is bigger than normal, and even a little larger than other kids with SB.  We knew that she had the Chiari malformation and now it's good to see how big it actually is.  I mentioned before that this MRI gives a baseline, so now we can see that she really doesn't have symptoms from this, even as big as it is, and we can compare it if she starts presenting symptoms in a few years.

Some symptoms can include trouble breathing, eating, swallowing, and feeling irritable.  Dr. Nagib has done lots of "decompression surgeries" for Chiari malformations that become symptomatic.  The surgery would consist of him cutting part of her skull to make more room for the cerebellum.  It's obviously a little more risky procedure because there's more of a chance to hit a nerve or cause damage.  This is one that they will strongly evaluate and watch over time to see how things improve before going in and doing this surgery.  We're thankful for that.

Her MRI also showed no signs of syrinx.  A syrinx is kind of like hydrocephalus of the spine.  Normal brains produce cerebral spinal fluid that flows freely down the spine and back up, sending nerves and signals from the brain to other parts of the body.  Because of the break in Leah's spine, there's a chance that pockets of fluid can build up along the spine, and in her case there weren't any.  It also showed that there wasn't any tethered cord.  At the spot of her lesion, she has a lot of nerves and tissues that could get stuck together and fuse to her spine.  This limits growth and also causes pulling on the spine.  Tethered cord surgery would scrape away some of that tissue and free up those nerves again.  This surgery is very common with SB. 

Those are pretty basic descriptions of very serious and complicated procedures and conditions.  Obviously I'm not a neurosurgeon, though I'm on my way to knowing more about the brain and spine than I ever thought I would be! 

Standing

Last Friday Leah got her new AFO’s (ankle-foot orthotics).  This is very exciting because it’s the first step towards getting her to walk.  The AFO’s are made of plastic and mold to her feet.  They go just a little past her toes and up to about mid-calf.  There are straps across her calf and feet to hold the foot in a 90-degree angle.  Even though she does not have the muscles to hold herself upright, even with the AFO’s on, they stabilize her foot so she can be in her stander.

So this stander – we thought we’d get it from the orthotics company but as it turns out our insurance no longer reimburses for it.  We were pretty disappointed because without a stander, the AFO’s don’t really matter.  We could purchase a stander on our own – to the tune of about $1,000!!!  Instead I posted on the local SB mom’s group to see if anyone had a stander we could borrow and as it turns out, someone did!!  We were able to get it on Sunday.  At first Leah didn’t really like it.  It’s a bit awkward to strap her in, and she was a little freaked out by it at first and overwhelmed by everyone staring at her (the mom and her daughter brought it over).  However, I put her in it on Tuesday and that went much better.  She was able to stand up for about 15 minutes, and she really liked it.  This was the first time she was totally upright and had both hands free.  I’ve stood her up at the couch before, but she wasn’t very secure and wanted down after just a few minutes.  But with this, she could play with toys and be completely independent.  She even was bouncing around and almost tipped herself over… note to self, I need to keep a foot on it and watch her at all times.

This stander will help her bear weight on her legs, which is very important for bone and joint and muscle development.  It’s what is going to build the strength for her to move her legs to walk, something we’re hopeful she’ll want to do.  Our goal at this point is 5-10 minutes at a time and keep increasing that time as she’ll allow.  As I have mentioned previously, we need to keep a close watch on her feet when she’s wearing her AFO’s.  Since she can’t feel pain in her feet, we have to watch for blisters or sores and to make sure we don’t strap them in too tightly.  She won’t be able to complain if it hurts so it’s our job to keep them healthy.  The good thing is that she doesn’t need to have the AFO’s on all the time.  They don’t bother her, but they don’t really do anything for her when she’s crawling around.

Here are a few pictures of her AFO’s and of her in the stander.

The voices on the video are my mom and sister-in-law, who were skyping with us.  As you can see, she was rocking herself back and forth and why I needed to keep a foot on her stander.

Mischief

Now that Leah is mobile, she's starting to get into a little bit of mischief.  It's so fun to watch her explore new things.  She has figured out how to open cupboard doors, though it is tough sometimes if her zip-zac gets in the way.  We have had to put outlet covers on and scold her for getting too close to the fireplace.  But it makes me so happy to see her getting around and doing things that any normal 14-month old would be doing. 

She has pretty much mastered crawling and has gotten stuck a few places, like under her table.  She is very good at the zip-zac as long as she just rolls forward.  She can't turn and we're still working on helping her get in and out of it, but I know that will come with time.  And she can roll very easily from tummy to back, but needs a little help going back to tummy.  It's funny because she understands when I tell her to roll over... and she does it! (well, usually)

Here she is having fun in the kitchen cupboards.  She sure can make a mess!!

Sitting at the table with her favorite thing to look at - pictures of herself

Mommy, I rolled over and can't get back!

She LOVED looking at the Christmas card photos.