What do you want to know?

As mentioned in a previous post, I'm hoping to get lots of questions for us to answer during Spina Bifida Awareness Month in October.  I've only had a few questions so far, so please ask anything and make suggestions on what you'd like me to cover in October.  The survey results are anonymous, so you can be very nosy!  Ty and I have always said we want to be open about Leah's condition and SB.  And I get a lot of feedback that everyone wants to see more posts... this is your chance to get me to do lots of blogs! 

Click on this link: Leah's SB Questionnaire to repond! 

The Strangest Thing

Today we had our regular check-ups for Leah.  We started out in Radiology for a head ultrasound, then reviewed the results with our neuro team, and our final stop was with our SB doctor.  When we got to the neuro's office, we waited for a while, which made me really nervous that he was consulting with the neurosurgeon.  So he finally comes out and gets us, and tells us he saw the strangest thing on Leah's results.  Her ventricles are actually a lot smaller than they were last time.  He said he doesn't normally see that; it's usually the other way around.  He said he was confused and asked if we'd done a shunt revision in the last 2 months... they were so much smaller that he thought we'd had it done and he just couldn't remember!  To say we were thrilled is an understatement.  There's really no explanation for it, other than maybe her body is more able to accomodate the fluid and is finally getting used to the shunt.  We asked our SB doctor if he had any idea, and he said he didn't care!  Just as long as they look as good as they do, that's all that matters.

I think this was the last time we'll be able to do an ultrasound with Leah because her fontanelle is closing.  Once it closes, we'll no longer see her ventricles through it, so the next time we go in, they will likely need to do an MRI or CT-scan.  We don't need to go back until she's about 1 year old.  At the 1-year appointment, we'll do a full work-up of her spine as a baseline to refer back to as she gets older.  We'll also do another bladder and kidney study.  This study will determine how well her bladder empties and whether there is any reflex back up into the kidneys, which can cause frequent UTI's and long-term damage.  We did this when she was about 1 week old, and we'll want to continue these studies as she gets older to make sure her kidneys stay healthy.

Today was a huge relief for us.  We've been worried about her shunt since April, when we first saw her ventricles enlarging.  The next couple appointments showed slight increase in ventricles, and then the last 2 appointments they've been a bit smaller.  Now that they are significantly smaller, we are sooooo relieved.  I'm also extremely thankful that we never went in and replaced the shunt back in April.  This was a good day.  I like good days - hopefully we'll have lots more good days with this little girl.

Gettin' Ready for October!

October is Spina Bifida Awareness month.  Yes, I know I'm getting a little ahead of myself.  But I would like to invite our friends, family, strangers who read our blog, the chance to ask us whatever you'd like to know.  It could be anything... about Leah's health, her condition, Spina Bifida in general... whatever!  I'm sure there are things you'd like to ask us and I'll take the time during the month of October to answer. 

Here is a link where you can post your questions: Ask Anything!

Spina Bifida Walk-Run-Roll

Today we went to the annual SB Walk-Run-Roll.  It was at a really nice park and the weather turned out to be ok.  There was a good chance of rain this morning but it held off and we were able to be outside to enjoy the walk.  It was also nice to see some of our SB friends that we hadn't seen in a while and to meet some new people.  We were especially excited to meet a family whose 2-year old was rolling around in a home-made wheelchair fashioned out of the bumbo seat.  It was sitting on a big cutting board and had wheels, and they told us they made it to model the Zip-Zac wheelchair. 

It got us talking about making or getting something like this for Leah.  Just in the last week or so, she's been showing signs of wanting to be more mobile.  We know that a normal 9-month old would likely be crawling right now.  We were having dinner with neighbors who have an 11-month old and he was standing and taking a few steps on his own.  It makes us want to start pushing her a little more to give her some independence.  It's a fine balance between getting her to be mobile in a chair and getting her motivated to stand and walk on her own.  I'm hopeful she'll get into a stander and braces and walk; but I also don't want to hold her back from being mobile.

It was a really fun morning being with the SB community.  I loved watching how spunky these kids are and also looking at all their gear.  Ty especially likes seeing what kind of gadgets they have.  But it also makes me realize how fortunate we are with Leah's condition.  There were a few kids who were on oxygen or had tracheal tubes.  Others have had several shunt revisions, surgeries to correct club feet, to loosen leg joints, or more serious surgeries.  We are so blessed!

Growing Up

Leah had 2 big milestones this week that shows me she's growing up.  First, this morning she finally got her first tooth!!!  There was just a little bit of white poking through her gums and I think the 2nd one is not far behind.  That explains why she was chewing on her tongue yesterday.  What an odd feeling of having soft gums one day and a tooth the next!

She also is done with her swaddle blanket.  Yes, my 9-month old was still being swaddled to bed each night.  Typically a baby weans off the swaddle around 3 months, certainly when they can start rolling.  Since Leah doesn't roll from back to tummy, it was ok to keep her swaddled and she really needed it to fall asleep.  Last week she woke up a few hours after going to bed and got some spit-up on her swaddle.  It was too late to wash it, so I put her back to bed on her tummy and she slept all night.  Since then I've been putting her down on her tummy.  It's taking a little longer for her to fall asleep but she is able to sleep without the swaddle... something I thought would NEVER happen!  It's fun watching her grow up but makes me kind of sad that she won't be a little baby much longer.

9 Month Baby

Last Friday Leah turned 9 months old.   I just cannot believe how quickly the time has gone by and what an amazing little baby she is. Here are some of the things she’s doing these days:

We had her 9-month check-up and she weighs in at 17 lbs and 26".  That puts her in the 30th percentile for weight and 20th for height.

She can roll very easily from tummy to back. With a little help, she can go from back to tummy, but she doesn’t like being on her tummy for long. She can sit up on her own if she has her hands on her knees, but can’t quite sit unassisted if she has something in her hands. She is doing great with a little bit of support, either in the bumbo chair or propped against the couch with a little table in front. She can pivot on her tummy about 45-degrees.

She has a pretty good variety of sounds, like da-da, ma-ma, ni-ni (like night-night), and starting to put in some gaa and vaa sounds. She doesn’t associate dada or mama to either of us yet, but she knows Jack! If we ask her “where’s Jack?” she looks at the floor for the cat. It makes us realize how often we talk about him.

Her fine motor skills are very good. She can pick up small pieces of food (although it’s harder for her to put those small bites in her mouth). When she’s holding rings or small toys, she can turn them around and grabs onto them really well. We’re starting to work on putting a toy into a bowl and figuring out how to find toys when they disappear under a blanket. The other night I had her up on the kitchen counter playing while I was cleaning up, and I put a little water in her bowl. It was so funny to watch her face when she put her hand it in. She looked up at me like, DO YOU KNOW WHAT’S IN HERE??!!!!! She also loves clapping and now she’s banging rings or toys together and against a hard surface. I think she likes making noise.

She is still toothless. I thought for sure there’d be at least the bottoms in by now, but we’re still waiting. I’ve been a little slower than I probably should on feeding her solids. She’s only getting solids at dinnertime and it’s only 2-3 times a week that we’re giving her anything. She doesn’t wake up in time to have breakfast and we don’t sit down for a family dinner regularly, so we haven’t been in much of a routine there. It is fun to watch her try new things and she will pretty much eat anything we give her, including asparagus! Actually she loves asparagus and other vegetables, including a bite of my spinach lasagna. Her sleeping habits are pretty good. She goes down for the night between 6:30-7 and wakes once to eat. I thought she’d outgrow this by now, and I’m getting tired. There’s really no routine, she’ll wake anytime between 1am and 6am. During the week I have to get her up by 7 to get to work on time, but on the weekends I let her sleep until 8:30… and I sleep until then too!

Everything is moving along right on track.  Her pediatrician was really happy with how she's developing and growing, and we are also very thankful to have such a happy and healthy baby.  And as promised, here are some recent photos of the babe...

Celebrations

We have been keeping very busy the last 2 weeks, but with lots of fun events and celebrations.  2 weeks ago, our college friends came to town for the Twins-White Sox baseball game (they live in Chicago), so it was fun to have a night out away from the baby.  Then 2 weekends ago Leah and I made another trip down to Illinois to reunite with the Cunningham clan.  The main reason for the trip was to celebrate baby Colin's baptism.  But we had some extra celebrating to do because my brother Matt got engaged to his girlfriend, Katie!  We are sooooooo excited to welcome her (officially) into the family.  And more good news, my other brother Dan officially made the Peoria Fire Department.  After 2 years of interviewing and testing and waiting and waiting, he finally got THE call that he's been waiting 29 years for.  He's expecting to be in the Academy this fall.  Congratulations to all 3 of my brothers who had big exciting events happening!!!

While we were in Peoria, Leah got her first real haircut at the salon.  My sister-in-law is a hairdresser, so she cut Leah's bangs and trimmed up the back.  Now she looks so grown up.  She even got a lollipop treat for being such a good girl.  She sat on my lap and went along with it, and thankfully was very patient and let Jamie cut it.  Unlike her mommy, she sat very still and was a good sport.  I think she liked all the attention and being in the salon with all the girls.   

Last Sunday my mom and sister came back to Minneapolis with us, and this was Leah's first long car ride.  The longest she'd ever been in the car was about 2 hours, and this trip ended up being 9 1/2.  Yikes!  Usually the trip is about 7 hours, but I figured it would take a little longer with stops to feed her.  We didn't plan on almost an hour of road construction just south of the Cities.  But we all survived and I'm thankful I didn't have to do that drive by myself.  We're planning on returning for the holidays this winter, and I'm thinking maybe flying is the way to go.

Last week was a busy week for me at work.  My department had our annual meeting with 3 days of all-day meetings and evening activities.  I had a great time but it was tough missing bedtime for Leah and I didn't get much time with her.  She and I had some good snuggle time on Saturday morning, though, which was good for both of us. 

Leah seems to be back to normal after her ear infection/ upset tummy/ gagging episodes of a couple weeks ago.  Thank goodness because she had me pretty worried.  We are now thinking that maybe we don't need to do the sleep study that Dr. Marker had recommended since she hasn't had any issues.  We did have to call him on Saturday because she broke out into a pretty bad rash.  I was playing with her on the floor of our living room and she was rolling around on the carpet.  We had been warned that carpet backing contains latex, but we had never seen a reaction from her before.  Many kids with SB have a latex allergy because of the exposure early in their life to it.  Leah hasn't shown any signs of allergy yet, but we have a precaution for her.  We watched her closely throughout the day, and thankfully it didn't move past a rash.  However, we will need to keep an eye on anything that has latex because the reaction will get worse and worse each time she's exposed.  The good news is that a lot of hospitals and schools are moving to latex-free because of the allergy, and it's good to know about it now so we can keep her away from it. 

I have lots of pictures on my camera that I need to download and add some recent ones of her.  Check back soon!