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!!

Giving Back

Last week I volunteered at the Ronald McDonald House with 3 of my co-workers.  It was awesome to give back and serve a meal for families whose kids are in the hospital.  We cooked at Gillette Children's Hospital in St. Paul, which is a smaller hospital with 45 patients that deals with trauma and rehabilitation.  This RMH has 4 bedrooms and typically serves 30-50 people.  We made spaghetti and meatballs with salad, rolls and cookies.  It was delicious!  And we served 54 people!!  Everyone was so grateful that we gave up our evening to come and cook for them.  I could see how tired the parents were, how worried they were, how much they just wanted to be home.  I know because I've been one of them.  It was really amazing to be on the other side of the kitchen and do something special for these families.  We've been so blessed to be able to use the RMH at Children's when we've been there for Leah.  It really is an amazing charity!

Exciting Day

Today was Leah's big 1-year appointment.  This was the big one, where she would have the full brain-spine MRI and kidney/bladder studies and go to SB clinic to see all her doctors.  Unfortunately she has a little cough and runny nose, so we had to cancel the MRI but we did everything else.  We canceled the MRI because she would have to be put under general anesthesia, since it is a 2-hour procedure and it's virtually impossible to expect a 1-year old to lay still for that long.  We'll go back in about a month for the MRI.

This morning we started out in Radiology for an ultrasound first and then a test to check the overall health of her kidneys.  We did a kidney and bladder ultrasound to make sure they still look healthy.  Then she had another test where the technician inserted a catheter, filled her bladder, and checked to see if there was any reflux back into her kidneys.  They also wanted to see how much of that liquid she was able to void on her own.  After those 2 tests, we had a bit of a break before we needed to go to clinic, so we grabbed some lunch in the hospital cafeteria.  As we were finishing our lunch, we saw a little girl, about 2 years old, roll by us in her little wheelchair.  She also had braces on her legs, so we decided to stop by and chat with her mom.  As it turns, out she does have SB too and they were also there for clinic.  The mom (who I "know" from the SB parents' facebook page) told us about the wheelchair and how they started the process to get her daughter into it.  It was really nice meeting yet another family!

After lunch we headed to SB clinic where we were to meet with our nephrologist (kidney doctor, SB doctor and rehab doctor.  First, the nephrologist came in and gave us the good news that Leah's kidneys are perfect.  Yay!  We are so fortunate that we still don't need to cath her, and that she's able to go on her own.  Once we're ready for her to get out of diapers, we'll need to figure out a bathroom management program, but it's very nice not having to think about that right now.

Then Dr. Marker, our SB doctor, came in.  He hadn't seen us since Leah's shunt revision last month and he was really happy with how she looked.  We talked about how mobile she's becoming - lots of crawling and rolling in her zip-zac.  He was fiddling around with her feet and asking us whether she's in any kind of standing equipment, which she is not.  So he told us that it's about time for her to get into braces and get a stander.  And that she could get fitted for them today!  We were really excited!!  Our SB clinic shares the office space with an orthotics company, so someone came in and took casts of her feet to custom-make her Ankle-Foot-Orthotics (AFO's), which will be ready in a few weeks.  She'll also get us the stander.  Since she does not have feeling or movement in her legs, it is very important for her to start bearing weight on her legs and feet.  She needs that to get used to standing if she wants to walk, but more importantly getting up on her legs is necessary for growth and development of her bones and muscles.  

The final doctor to come in was the rehab doctor, who confirmed that she does need to have orthotics and supported the AFO's and stander.  She also recommended us to Sister Kenny, a rehabilitation center connected to Children's and Abbott, for "wheelchair school." Basically we go there to get information on all the different wheelchair options we have for her and they can help us decide what's right for Leah now and as she grows.  This is a good option, as they are independent of any wheelchair vendors who have a vested interest in us buying their product.  The process to get a chair can be very lengthy so it's good to start now.  She will grow out of her zip-zac before we know it and we want her to keep up with kids her age, both in mobility and getting up a little higher to be more at eye level with her peers.  The family we saw today in the cafeteria waited 6 months to get their chair, so it's not something that just happens overnight.  

So that was our very exciting day!  I cannot believe she's going to get braces soon and that she'll be starting the process for standing and walking.  Just in the last 2 weeks she's gotten so much more mobile.  She is army crawling all over and is even starting to get to things we don't want her to touch, like outlets and the fireplace.  Ty and I keep looking at each other and saying how amazing it is that she's learning how to get where she wants to go.  Leah amazes us constantly.