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.

Where Have We Been?

I can hardly believe that it's almost the end of January!  It feels like we were just celebrating New Year's but Christmas is already a month away.  So what have we been doing??  Well, getting over being sick, for one.  Just as we got feeling better from our holiday sickness, Leah came down with the flu.  It happened very quickly.  She started feeling sick on a Friday night - high fever, coughing, runny nose.  Poor little girl!  But thankfully by Monday her fever had broken and she was starting to feel much, much better. 

Then she was working very hard to get a few teeth to break through.  She was up a few nights for several hours at a time.... yes, I said hours.  Like as in from 12-2am.  That was... interesting.  She wasn't really crying or fussing, she just didn't want to be put down.  We had a couple tired days and I went to bed at 8pm a few times so I could be sure to get at least a few hours of sleep.  But I'm happy to report that 1 tooth has finally come through (YAY!) and I can see a sliver of white from the 2nd one peeking through the gums.  She's been sleeping great this week, so hopefully we've turned a corner on the teething front.

Last weekend we had a very exciting trip back to Illinois to visit my family.  Leah is becoming quite a pro at traveling, this was her 5th airplane trip.  This was our make-up trip after canceling Thanksgiving because of her shunt surgery.  We were all healthy, we had no weather or plane issues and everything went very smoothly.  I had picked this weekend for our visit because Saturday was my oldest nephew's 4th birthday and I thought it would be fun to be able to go to his birthday party.  Since we live so far away, we've never been able to go to any of the boys' birthday parties and now we were finally able to!  

There was an unexpected twist to our plans when my grandma passed away.  Her health had been getting worse over the past several months after breaking her hip last summer.  She went into the hospital for a routine procedure and a few days later really took at turn for the worse.  The next day she passed away peacefully.  She died on January 17, which was 5 years to the day after my grandpa.  We were able to change our flight to stay an extra day for the funeral.  I'm not sure how she knew but I like to think she planned it that way.  We'll miss you, Grandma Ellie!

Ahhh, Quiet

Happy 2013 everyone!  I hope all of our friends and family had a very happy and joyful holiday season.  The last 11 days for us have been the craziest, busiest, most hectic we've had in a long time.  Last Saturday we spent the day tidying up the house, grocery shopping and doing final Christmas shopping before Ty's sister, brother-in-law and niece came to town.  We hosted them all week, which was awesome because they hadn't met Leah yet.  It was so much fun seeing Leah meet her 2-year old cousin and getting to spend some good quality time with all 3 of them.  Then we hosted Christmas Eve and Christmas Day festivities.  Just as one set of houseguests left, my parents came to town for the weekend.  The biggest damper on our holiday was that all 3 of us were sick at some point.  Leah picked up a cough and runny nose, then Ty got a cold and I rounded out the trifecta with the stomach flu.  Ick!  

Sickness aside, we had a very fun and successful Christmas.  Leah was totally spoiled!  She got lots of new fun toys, books and clothes.  This year she was more into everything than last year (when she was just 6 weeks old).  She loved the Christmas tree and looking at the lights and ornaments.  And she was able to help open some of her presents.  Even though we were sick for a part of it, I loved spending lots of time at home with the fireplace going and hanging out with my family.

So now it's back to real life.  I am looking forward to getting back into a routine.  We really haven't had much of a routine for the past month or so.  Leah had her shunt revision and was out of daycare for almost 3 weeks, then picked up a little cold, and finally we had 11 days of company in the house.  I don't think she's had the same bedtime 2 nights in a row or napped or ate at the same time.  Poor girl, it's hard on her to be without a routine for so long.

Even though we won't be quite as busy as we've been, January will still have lots going on.  Leah will have her weekly Physical Therapy appointments, we also have her big MRI in a couple weeks.  We had to cancel this during our appointment in December because she had a little cough, so hopefully she'll be totally healthy in 2 weeks.  We also have our other monthly appointments like Early Intervention and Cranial Sacral Therapy.  And, most exciting, she'll be getting her leg braces and stander soon.  I'm cautiously excited for this.  I say cautious because this will mean some extra care for her that we're not doing today.  It's going to be very important to keep her feet and legs healthy and her skin clear.  Since she can't feel pain, she won't be able to tell us when they hurt or if she's getting blisters.  This can be a big deal to her overall health if we don't pay attention to this.  

Then there's the business of getting her teeth in.  She still has only 2 teeth!  But just yesterday I could feel 2 more coming in on top and not the 2 front teeth... though I think she's working on those too.  I can tell she's in pain because she's chewing on everything she can get in her mouth, including her hands.  Sometimes she just wants to sit and snuggle instead of playing with all her toys.  So as much as I enjoy my cuddly baby, I would love for those silly teeth to come through and give her some relief.  

We have a lot to look forward to in 2013.  I hope we will continue to be as blessed as we were in 2012.  Happy New Year!!