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.

The Weather Outside is Frightful....

Winter has officially come to Minnesota!!  Or, I should say MinneSNOWta.  It has been snowing all day today and is still coming down, totaling over a foot at our house.  Ty is ecstatic!  He has been waiting for snow since March and he went outside 4 times today to snowblow the driveway and sidewalk.  He is in snow heaven.  I spent the day inside with the fireplace on, doing laundry, cooking a pot roast and baking chocolate cupcakes while Christmas carols played on the radio.  Even though I'm not a huge fan of winter and cold, it is very pretty the way it sticks to the trees and I loved having an excuse to stay warm and cozy inside.  It is still snowing so I'm a little nervous about how the roads will be tomorrow getting into work.  

Yesterday we had a pretty busy day.  We started out taking Leah to a Santa breakfast.  My friend Maggie had some families over to her house and Santa showed up!  Leah was very interested in him and didn't take her eyes off him.  When I set her in his lap, she did what any 13-month old would do... cry and reach for her mommy!  It was pretty funny, and the crying baby with Santa is a classic picture, so I couldn't resist.  Someday she'll laugh at it, I hope.  Last weekend we put up our Christmas tree and decorated the house, and now it's just a matter of waiting until the big day.  We're all ready!!

Last Thursday night we had a fun dinner with another SB family.  They are from North Dakota and were in town for their little guy's 1-year appointment, the same appointment that Leah will have next week.  She and I met through one of the SB mom's online group and have exchanged emails through facebook but hadn't met in person.  It was so much fun to meet her and her husband and their little guy, Westin, who is 11 months old.  He and Leah were so cute together, it's neat seeing Leah interact with other kids, and they were sharing Cheerios with each other.  I think they're in love ;)  They see all the same doctors we see, so it was fun to compare notes and hear how the appointment went so we know what to expect.  It's also just fun to have another couple to relate to with all the stuff we go through.  They are heading out to Baltimore in the spring to the Kennedy Krieger Institute, which is a world class organization for treating spinal cord injuries.  It was founded on the philosophy that people with paralysis can hope for recovery of sensation, function and mobility and offers and intensive program that teaches patients how to compensate for their injuries.  I had never heard of this program, so again it's great to learn when other parents are doing cool and innovative things for their kids.  It's definitely something that we will look into and consider if it's the right thing for Leah.

Tomorrow (weather permitting) Leah will head back to daycare full time.  Last week she had a couple 1/2 days because my mom was in town helping out.  Leah only had 2 full days at school, and the teachers said she was getting kind of fussy and clingy, which isn't normal. She also was napping at very weird, random times and wasn't going to be at a usual time.  I'm hoping that we're able to get back into a normal routine again.  We also have another busy week coming up.  Tuesday is an appointment with our Cranial-Sacral therapist, followed by Physical Therapy.  We also are getting new carpeting on Tuesday in all the bedrooms, so we had to empty out the furniture and closets over the weekend.  I didn't realize how much stuff we have until it's time to move it!  We did get rid of an old dresser (love craigslist!) and I've been purging the closets as well.  It always feels good to get organized.

And I saved the best for last.  Leah is learning how to use her zip-zac!!  She has been rolling around in it all weekend.  Saturday morning she pushed forward a few times and then tonight she rolled all the way across the living room.  It was so much fun to see her mobile. Earlier today she stared down the Christmas tree but didn't come close because it was too far away.  But then by the end of the day she finally rolled over there.  We have to still work on turning but she is starting to really get it.  She's also doing so much better on her crawling and moving around in a circle going both directions.  As with the zip-zac sometimes she thinks something is too far, but if she's enticed by something she really wants (like the computer or any other electronic device), she'll go for it.  I love seeing the determined look in her eye when she wants to get somewhere.  And so I can officially say that our little girl is mobile!  

Life is Getting Busy!

Life is kind of getting back to normal and it's also getting very busy.  Leah went back to daycare today after being home for over 2 weeks.  She was very happy to be back, and everyone there missed her very much.  Her teachers said she was pretty clingy today, which is probably because she's been used to getting a little spoiled at home (hee hee).  Last week we had a few appointments and we're gearing up for lots more.  On Thursday Leah got her stitches taken out, which really made her upset because I had to hold her head down.  She did not like that at all!  But the good news is that her head is healing very nicely, and even better news is that her hair is already growing back in.  When she first had her shunt put in,  her hair didn't grow back in for several months, but now it should grow back in just a few weeks.  I know it shouldn't bother me, but I don't like people staring at her scar.  

We also finally got her into Physical Therapy!  This is very exciting for me, as I know she needs more than what I can do with her at home.  Our first appointment didn't go all that well, as Leah was kind of tired and fussy.  She didn't show off any of the cool tricks she has, but I think she needs a little bit of time to get used to it.  Next time I need to make sure she's well rested and has a full tummy.  I think it's also good for someone else to push her, since I sometimes give in when she starts to complain a little bit.  So we will be going to PT once a week.

Tomorrow we have PT plus Early Intervention from our school district is coming.  They typically visit us once a month, but we've both had to reschedule a few times so it's been almost 2 months since they've seen Leah.  I like that they can tell me whether she's meeting all of her developmental milestones.  I know she's always going to be behind in her gross motor skills, like rolling and sitting and walking, but I want to make sure the others are on track, like fine motor skills, cognitive and social development.  So far she's been right on track, which eases my mind a lot.  What I still worry about is her language, as she doesn't have any real words yet.  She babbles a lot and points and grunts, she knows things, like ears, lights, fans, cats, but doesn't talk yet.  I know I'd probably worry about this even if she didn't have SB, but I want to make sure we can keep her on track and get her extra help if she needs it.  

So this week we have PT and EI.  Next week we have PT and we go back to see our Cranial-Sacral therapist, who we haven't seen in over a month.  Then the following week we have her full-day of appointments.  Whew, I'm already tired!  It's good, though, to be getting so much good care for our favorite little girl.

Life with a New Shunt

I posted last time that a new shunt made for a happy baby.  Boy was that an understatement!  I should say that a new shunt makes for a NEW baby.  It's really incredible how much happier she is, and it was pretty amazing how quickly she started feeling better.  In the last 10 days she has started pulling herself forward, she's rolling forward and backward in her zip-zac (though she's not really going anywhere yet), doing high-fives, waving her little fingers, and talking  babbling up a storm.  All the while she's in the happiest mood ever. 

She's been out of daycare for a week and will be out again this week.  It's the best thing for her but it's also the worst thing.  The last few nights she has not been tired at her normal bedtime of 7:00 and was even up until almost 9 last night.  I just cannot wear her out and stimulate her like they do at school.  This afternoon Leah and I stopped over at daycare so I could pick up her linens that come home each week.  She was so excited to see everyone!!!  She was trying to jump out of my arms and into her room!  I could tell she recognized her teachers and the other kids and really wanted to stay.  It made me feel a little better that she'll be happy to go back to school next week.  

In the meantime, we've been trying our best to keep her busy here at home, which has been more difficult since the Minnesota winter has settled in.  We were very fortunate to have a warm Thanksgiving last week, and we were able to go for a walk down by the lake for the 2nd year.  We took a picture at the same spot we got one last year when Leah was just 2 weeks old.  We also had a low-key dinner again this year with just the 3 of us.  I made a full turkey dinner again, though this time I made homemade stuffing instead of the box kind.  What a difference!  It was super yummy!!  While it was great to have a very relaxing 4-day weekend, it also made me very sad that we had to cancel our trip back to my family.  We had planned on flying there on Tuesday night, but we decided to cancel when Leah needed shunt surgery.  We were here in Minneapolis for both holidays last year and now we'll be here again for both holidays last year.  At least we were able to get credit for our tickets so we'll just have to plan a trip there after the holidays.

In general health news, we had Leah's 1-year appointment today.  She weighs 20 lbs and is 29" long, so she's in the 30th percentile for both.  She's meeting all of her milestones and seems be growing and developing right on track.  I had also taken her to the eye doctor a few weeks ago, right before her shunt failure.  Because of her hydrocephalus, we want to make sure any increased pressure doesn't affect her eye health.  Thankfully her eyes are looking good, haha!  Up next, we are going back to the neuro team later this week to get her stitches removed.  Then in a couple weeks we have her big 1-year Spina Bifida appointment where she gets a full brain and spine MRI, followed by a renal/kidney scan, and then on to SB clinic.  It's the longest and most intense regularly-scheduled appointment that she'll have.  I'll be thankful when it's over.  Hopefully that will be the last time we're at Children's for a long, long time.  

New Shunt, Happy Baby

Leah's 1st shunt revision went very well.  My sister Maureen posted my last blog entry last night for me, so it was actually after the shunt revision happened!  I'll give a quick recap of yesterday....

Like I said, we were in limbo for much of yesterday waiting to find out what time the surgery would be.  At one point they were going to try and squeeze us in at 2:00, but that time came and went.  Then it was 3:00 and we thought maybe we were going to have to wait until 7.  Ty was getting very restless, so I made him leave and get outside for some fresh air.  Wouldn't you know it, he was only gone for 10 minutes when they came in and said we're up!  We headed down to the surgical floor to get her prepped, and they took her back a little after 4:00.  Since she already had the IV put in, we were able to stay with her while she got some sedation drugs.  It was kind of funny but also kind of sad when the drugs hit... she got really woozy, really quickly. 

The surgical nurse called at 4:35 to tell us that Dr. Nagib had just started, and we sat in the waiting room.  He came out at just after 5:00 and was already finished.  He just needed to replace the catheter that goes into her brain ventricles, as that was what got plugged up.  He was able to keep the valve and all the tubing in place, which is why the surgery went so quickly.  We waited a little while longer and then went back to Leah's recovery room to see her.  She was very groggy but recognized us right away.  She downed her sugar water and was a little peeved that it was gone.  Keep in mind she hadn't had anything to eat since 8:45 that morning.  Surprisingly it didn't bother her too much to go so long without eating, maybe that's because of how yucky she was feeling due to her shunt failure.  Either way, this was a much easier surgery experience than when her shunt was put in last year.

Once we got her back to her room, I could not believe how happy she was!  She was babbling and giving half-smiles and playing with her toys.  She did want extra snuggles with us but she wasn't in as much pain as last time.  The nurse also gave her a little bottle of pedialyte that she also drank up like crazy.  Finally at 7:30 I was given the go-ahead to nurse, which I thought would put her to sleep.  Nope!  She fell asleep but woke up when I tried to put her in her bed.  The little shunt-head popped her head up, wanted to play with the blankets and pulled on all her wires.  At this point I was totally exhausted and wondered how I would ever get her to sleep!  Finally she was ready to crash at 9:00 and stayed asleep when I put her down.  I was able to join Ty in our room at the Ronald McDonald House and we both got a full night sleep.  I debated staying in her room but figured the nurse would call me if she woke during the night and I was willing to take the chance that maybe she'd sleep all night... which she did!

This morning Leah went back down to Radiology around 7 (we had to wake her up, as she was still sleeping) to get a repeat CT-scan and shunt series.  This showed that everything with her shunt and new catheter look great and her ventricles are shrinking.  We do not want her ventricles to shrink too fast, but rather have them go down slowly.  She also had a great night, the nurses took her vital signs and she had a good blood pressure, good temperature and heart/lungs sounded perfect.  So they sent us home!!!!

We just got home a little bit ago, which I'm still kind of in shock about.  Yesterday our neuro assistant hinted that we might come home today if all looks good, but I didn't think they'd send us home so soon.  She kept saying that they're not kicking us out and we can stay as long as we're comfortable, and we both agreed going home sooner is better for us.  So we have some laundry to do and mail to sort through and 2 kitties who need attention, but we're home!

We have a follow up appointment in 2 weeks to have her stitches removed, and then we head back again in another 2 weeks for the same CT-scan and shunt series.  Our neuro team wants to make sure the ventricles are where they should be and then they'll determine what setting her shunt needs to be at.  She has to stay out of daycare for 2 weeks to stay away from germs and also to be in a quiet setting.  There's a little chance for her to hit her head or other kids to be rough with her, and 2 weeks is a good amount of time for everything to heal and get situated with her.

And there is the whole story.  I just can't stop looking at her and being amazed at how resilient and brave she is.  She is truly an amazing little girl and surprises us with her spirit.  We couldn't be more fortunate!  Thank you to everyone who was praying and sending support, it means so much to both of us to have such amazing family and friends in our lives.  Thank you!

Leah's 1st Shunt Revision

We are currently in the hospital for Leah's first shunt revision.  Yesterday daycare called me right around lunchtime and told me that she had thrown up all her lunch, like everything, more than just a little spit up.  She had also had a few throw-ups on Saturday night and again Wednesday night, coupled with some extra fussiness, and I knew a call to Dr. Marker was in order.  He didn't hesitate to have us bring her her in.  We went to Children's for a CT-scan first and then to see Dr. Marker, who told us that her scans did show increased fluid in her ventricles and that we'd be admitted right away.  So then we turned around and went back to the hospital, which is where we've been since yesterday afternoon.  Dr. Marker didn't think it was such a good idea for us to run home to pack a bag, and I've been feeling a little unprepared for this surgery.  Thankfully it's not an emergency revision, so we've kind of been hanging in limbo waiting to find out what time surgery will be.

Last night was a bit rough.  1-year old Leah is a little more difficult than 3-week old Leah.  She's aware of Mama and Daddy not being around, so one of us has to be in her room with her.  And she can't easily sleep through all the beeping and dinging and people in the hallway and random hospital noises, so neither of us got really good sleep last night.  It's ok, I was prepared for that.  Today we've been just hanging out in her room waiting to find out what time we're doing surgery.  It's changed a few times, this morning we thought maybe 11:00, then 3:00, at one point they thought it would maybe be as late as 7:00.  

I just took Leah down to Radiology for a shunt series, which looks at the shunt tubing to see if maybe the tube is kinked or if it's plugged somewhere else.  This will help Dr. Nagib see where the problem is and better determine how to fix it.  

I'll post updates later today with how surgery went.  For now, she's in good spirits and playing with some of the toys we have for her.  Thank you for all the prayers and support... keep it coming!!

Happy 1st Birthday Leah!

We have a birthday girl in the house!!  It was Leah's 1st birthday today, and we had a fun but low-key party for her with Ty and I and her grandparents.  The day started out yucky and rainy but the sun came out this afternoon and up to the mid-60's.  We even got outside for a walk.  Leah had a great time playing with new toys and being the center of attention.  She started out being a little hesitant with her cake but ended up having a lot of fun with it. Though most of it got on the floor, she did manage a few handfuls into her mouth.

I can't believe she is already 1.  The time has really flown by!  Here are a few favorite shots from the day.

These are my pinterest ideas.  I took a picture of Leah holding a picture of herself on her birthday.  I'll do this each year.

Mom and Dad and Baby, holding a picture right after Leah was born

Cake time!

Remnants of cake time

Update on SB Genetics Research

You may remember back a few months ago I asked for help with the Spina Bifida genetics research project. Thank you very much if you were able to participate, or if you tried but couldn't, or if you passed along the information to someone else.  I got the following email today from the project coordinator:

Hi Jennifer!

On Oct. 31, 2012 we reached our enrollment goals for the Spina Bifida Genetics Research Project 2 and closed enrollment in the study. Thank you so much for your participation in the Spina Bifida Genetics Research Project, your support is crucial to our research. We greatly thank everyone that spread the word about the study--especially the SB organizations. It was outreach like Facebook posts and onsite collection at Spina Bifida events that helped us reach our enrollment goals. We could not have done this research without all of your support.

Since opening enrollment in February more than 1,400 SB mothers and their affected child and 3,900 control mothers participated in the study. We now are starting the analysis phase of the study.  If we are successful in our research, participants will be updated on our discoveries. Please email info@sbgenetics.org or call 866.575.0110 with any questions about the study. To learn more about the study and genetics please visit our website http://sbgenetics.org/ and make sure to check out our educational video about the study: http://www.vpgenetix.com/sbvideo/. Please feel free to follow us on Facebook http://www.facebook.com/SpinaBifidaGenetics and Twitter @sbgenetics!

Thank you so much for giving a spit!

I can't help but notice that the project reached its enrollment goal on the very last day of October, SB Awareness Month, and that I got this email the night before our little girl's 1st birthday!  I hope this is a good sign of things to come from this project that could help Leah and all future children with Spina Bifida.  

Wait, did I just say it's the night before our little girl's 1st birthday??!!  I can't even believe that I was sitting here a year ago tonight, not knowing that my life would change just 12 hours later.  We have a little party planned for tomorrow with Leah's grandparents.  Check back for pictures of the birthday girl!

Happy Halloween!

I just had to share this picture of Leah in her Halloween costume.  

Happy Halloween!!

Thank You!!

Well, I had a blast posting lots of information about SB last month!  I'm glad I got a couple submitted questions and was able to answer what was on your mind. 

When I started this blog last year, I wanted to have a place to share our story with family and friends.  I've been overwhelmed by how many people are keeping up with us... some people that we've never met.  Thank you for reading and learning about Spina Bifida, thank you for praying for us, thank you for supporting us, and thank you for reading our story.  I hope that we're able to educate others about SB, and I hope that Leah will bring awareness to life with a disability.  Actually I don't think she really has a disability, she just will do things differently.  I love watching her figure out how to get around and move her body in a way that is uniquely hers.  I can't wait to see what she's able to do as she grows up!

SB Month Wrapping Up

I can't believe October is already coming to a close.  Leah's birthday party invitations came in the mail today, which means her birthday is just over 2 weeks away.  It doesn't seem possible that we've been in this for a year already.  I remember how nervous and anxious and stresed out I was at this time last year.  Then I look at her and I can't believe I was ever nervous and anxious and stressed out I was!! 

She's doing lots of new fun things, like waving (which is really just sticking her arm out and sometimes wiggling her fingers), clapping on demand to "Good Job, Leah" and just tonight started playing peek-a-boo.  She knows where the baby is in the mirror or picture, she knows Mama, Dada, Jack and Jill now, though she's not saying any actual words.  And there's just nothing like hearing her big belly laughs... it's so much fun to get her going!  I love that she's getting so much more fun but I'm also sad that she's not going to be a baby much longer.  This week I had a few long days at work so last night I rocked her to sleep and held her for an hour while she slept before putting her down because I had missed her.

Then there's the matter of her mobility.  She's becoming more mobile, scooting around on her tummy, and sliding on the wood or tile floors.  She's learning about her zip-zac, though she's not proficient in it yet.  While she is making progress, she's not as mobile as she'd like to be.  I can tell that she wants to be able to go explore or get a toy.  She points to things on shelves or on the floor that she wants.  It makes me realize more and more that we need to get her into more rigorous physical therapy.  We go back to our full day of Spina Bifida doctor appointments around the time she turns 1, which is coming up, and I'd really like to talk to our doctors about recommending a program for her.

So that's just about it for an update on Leah.  I've always said that no news is good news.  We've just been plugging away, enjoying our 11-month old, watching her learn something new everyday, and snuggling with her as much as possible. 

Little Cutie

Check out our little cutie practicing in her zip-zac.

Home Sweet Home

In honor of SB Awareness month, my next topic will be about our home, why it's perfect for a little girl in a wheelchair and what modifications we may need to make in the future.  We've lived in this house for 3 years, way before becoming a family of 3 was a consideration.  I would consider this an impulse buy... if you know Ty at all, you know that he can sometimes get funny ideas into his head and he won't stop until he sees it through.  The summer of 2009 we started talking about someday moving into a house (we were living in a townhome at the time).  Yes, that would be great, we'd have a yard and have more privacy.  I was literally painting the last room of the townhome that needed to be painted when we found this house. 

I have to admit, I wasn't in love with it.  There were a lot of things about this house that I didn't like... first and foremost it was a 1-level.  I always thought that I wanted a 2-story house and the thought of having everything on the same floor didn't really appeal to me.  But in the back of my mind as we were going through this house, I kept hearing a little voice telling me that this was our house.  I fought it.  I tried to come up with excuses why I didn't like it.  And yet, here I am 3 years later in this house.  I've had other times in my life when opportunities have presented themselves that I have tried to resist but in the end I realize that things worked out the way they are supposed to.  In the end, this is the house we were meant to be in.

I think I've mentioned before a little bit about the house, but let me elaborate.  Our house is a single story, and while we do have a basement, it's yucky.  It has low ceilings and because it's an old house building in the 1940's, there are lots of spiders and other creepy crawlies that I don't like to think about.  It's not really a place to hang out.  The only steps we have are 2 to get from the garage into the house, and 1 down to the sunken 4-season room, which are easily made accessible.  Our driveway is completely flat out to our street, perfect for a little girl to wheel out to the school bus. 

We have 3 bedrooms and a den.  Right now Leah is in the bedroom closest to ours.  Once she gets a little bit older and we're able to better identify what special accommodations she'll need, we have the den that we'll likely convert to her room.  It has a bathroom right next door that badly needs updating (it is original to the house, which was built in the 1940's!!!, pink tile and all!!).  We'll make that a suite for her, complete with a wheelchair-accessible bathroom.  We also plan to put french doors to the outside patio so she can have another escape route if something happens.  My biggest fear is that she will be trapped in our house without a way to get out. 

The rest of the house is fairly accessible and could accommodate a wheelchair with some minor modifications.  We'll have to enlarge a few doorways, and when we get new carpet, it will have to be a very short weave so she can easily get around.  Our kitchen has a lot of cupboards and drawers under the counters, and we'll use one section to put bowls and cups and plates for her to reach.  The good news is that we don't have to do major renovations, or consider moving to another house.  As for me?  I've grown to love this house, even more after finding out about Leah's condition and realizing how perfect this house is for her. 

Great Question

I got a great question from our survey that I would like to answer.

Q: Do you know if there is a point at which you might know if Leah will be able to walk with or without assistance?

A: Right now Leah does not have feeling or movement in her legs below her hips.  When she's on her tummy, she can wiggle her butt and move her hips, but the rest of her legs don't move.  This does make it more challenging for her to walk on her own.  But moving her hips is a good sign that she'll be able to move her legs forward to walk with some sort of help, either from a walker or crutches.  When she turns 1, we'll start seeing the rehabilitation doctor and hopefully get her into a stander.  This will help her start bearing weight on her legs and getting her used to the process of walking.  We'll also start getting her fitted for braces on her legs, as she will need that support.  We will do everything we can to enable her to walk, but it's going to be up to her to decide if she wants to or not. 

In the short term, yes, I truly believe she will walk.  I think she'll need braces on her legs and a walker to help her, but I think she'll do it.  As she gets older, I think she'll prefer to be in a chair.  Walking is hard work, and she can probably get around a lot more quickly and keep up with her friends in a chair.  But that's really up to her.  Again, we'll help her be mobile in any way she wants and let her decide what works best for her. 

In the longer run, I hope to see advancements in technology and science that will allow her to walk all on her own.  I can't even imagine what is going to be available in the next 10-20 years, maybe there will be a revolutionary surgery that will reverse the effects on her spine.  Maybe there will be bionic legs or cell regeneration that will allow her to regrow her legs.  Who knows?!?!! 

Thanks for the great question.  Please feel free to ask more questions if there are other things you'd like to know!

Meet Leah's Team

Today’s topic is introducing you to the team of doctors who helps us care for Leah.  We are extremely fortunate to have such amazing doctors, nurses, professionals here in Minneapolis.

Hospital Campus: We go to Children’s Hospital of Minnesota for Leah’s care.  When we go for her regular day of appointments, we start out at the hospital in the Radiology department.  This is where she gets her head ultrasounds, and where the MRI and/or CT-scans will be.  The hospital is just a few miles south of downtown in Minneapolis and takes us about 25-30 minutes to get there from our house.  It’s in the middle of an urban neighborhood.  If you recall, Leah was born at Abbott Northwestern, which is several blocks from Children’s and connected by an underground tunnel.  In between the 2 hospitals are many medical buildings on a large medical campus.

Team Neuro: Dr. Nagib is our neurosurgeon.  He is the one who performed Leah’s back surgery and placed her shunt.  He also consults with us when we are concerned with her shunt and it’s ultimately his decision on whether we do a shunt surgery.  His nurse practitioner is Pete, who we see for Leah’s regular neuro visits.  When we have head ultrasounds, we then follow up with Pete, and only sometimes get to see Dr. Nagib.  Pete reviews the results of the ultrasound with us and if he’s concerned, he’ll consult with Nagib.  Pete sees a lot of other SB kids too, so he is very familiar with SB.  The neuro team offices in a building right across the street from Children’s Hospital so we can just walk there after we have our ultrasounds.

Team Spina Bifida: Dr. Marker is our primary SB doctor.  He has been a doctor for a looooong time, and his specialty is actually infectious disease.  He got involved with SB because many of the conditions that come from having SB are treating and preventing infections – bladder, UTI, shunt – so his background fits very well.  Dr. Marker is an old-school doctor, so he is on call 24/7 and will return our calls within minutes of having him paged.  He and our neuro team consult with each other on their patients, so Marker and the neuro team of Pete and Nagib are fully aware of everything going on with Leah.  Dr. Marker’s regular office is about 20 blocks from the hospital, so we drive there after meeting with the neuro team.  He does have SB clinic on Tuesdays in a medical building next to Children’s, so we walk back across the street to see him when we go on Tuesdays.

Dr. Glasser is another doctor on team SB.  He is the nephrologist, which is a doctor of the kidney and bladder.  His primary concern with Leah today is keeping her kidneys healthy.  We don’t always see Dr. Glasser, just after Leah has had any kind of renal ultrasound or bladder study, which is typically done every 2-3 visits.  Once she gets to the age when we want to put together a bathroom management program, we’ll see him more often.

Dr. Privila is Leah’s eye doctor, who she sees twice a year.  His main focus is to make sure her eyes stay healthy and don’t have any residual damage from her hydrocephalus.

Leah also has to see a regular pediatrician to make sure her immunizations are up to date and that she is meeting her development milestones, just like any regular child.  Dr. Benson is her pediatrician, and though he’s not totally familiar with SB, he was strongly recommended to us by our NICU doctor when Leah was first born.  She sees him for all of her well-baby check-ups. 

Those are all the doctors she sees today.  As she gets older, she'll start seeing a rehabilitation doctor, who will help Leah with her mobility, whether that's getting braces on her legs or in a stander.  We could also see an orthopedic surgeon if she needs to have surgery on her legs.  She also will need to see a urologist if there are surgeries she'll need for her bathroom management program.  Those are things that are a few years away, though.

Welcome to SB Awareness Month

Wow, is it really October?  That's means it's Spina Bifida Awareness month!  I'm excited to share lots of information about SB, but if there's something you want me to feature, there's still time to ask your questions. 

The first post today is to share an initiative that the SB mom's group is starting.  Many of us who receive the diagonis of SB are told that our babies are going to be severely disabled, may have cognitive learning challenges, will never walk, and will have no quality of life.  A lot of us are encouraged to terminate our pregnancies, and are given a very worst case scenario of what our babies' lives will be like.  I remember last year around this time I was on the SB mom's group online and one mom had just received the diagnosis at 22 weeks.  Her doctors gave her and her husband a very grim outlook and they decided to terminate.  Sadly she found our group too late and didn't realize before making their decision that SB is NOT a terrible diagnosis and can absolutely be managed with the right care. 

So this month we're trying to share accurate, up-to-date information about Spina Bifida with  obstetricians, perinatologists, maternal-fetal specialists, geneticists, and others responsible for delivering the Spina Bifida diagnosis to expectant parents.

One of our amazing moms has created 2 guides to share with the medical community.  The first is a guide for medical professionals who deliver the diagnosis to parents: http://www.spinabifidaassociation.org/atf/cf/%7B85f88192-26e1-421e-9e30-4c0ea744a7f0%7D/A%20GUIDE%20FOR%20MEDICAL%20PROFESSIONALS.PDF

The second is a guide to those expectant parents: http://www.spinabifidaassociation.org/atf/cf/%7B85f88192-26e1-421e-9e30-4c0ea744a7f0%7D/EXPECTANT%20%20PARENTS%20GUIDE%20TO%20SPINA%20BIFIDA.PDF

If you'd like to help, you can print out these info sheets and send to your OB/GYN.  If you have an appointment with an OB/GYN or maternal fetal medicine specialist or know a hospital social worker, please consider giving this to them. 

You can also join the Facebook event: https://www.facebook.com/#!/events/342153912543118/

Yes, getting a Spina Bifida diagnosis is devastating.  But it's not the end of the world.  I can't imagine my life without Leah and how much joy she brings to us.  It breaks my heart thinking that some babies never make into the world because their parents get incorrect or outdated information. 

Just look at this face.  Does this look like a baby who wouldn't bring immeasurable joy to this world? 

Leah's On A Roll

Here is our sweet little girl figuring out how to roll around in her new chair. 

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!

Plugging Away

We've just been plugging away lately.  Leah had been not feeling the greatest for about 2 weeks, and last Monday night we took her to the pediatrician where she was diagnosed with an ear infection.  So that's why she was soooo cranky and fussy last weekend.  She also had been having some teeth pain, so we had been giving her motrin and teething gel as well.  All the while we were both getting nervous that she was having shunt failure, but she seems to be on the mend now.  Just last night I was tickling her and getting the best belly laughs from her, so I know she's in better spirits.

Last Thursday I did take her to see Dr. Marker, her SB doctor.  He wanted to see her for himself.  He looked at her ears and saw that they are getting better, so that was good news.  But he spent a lot of time reviewing her last couple head ultrasounds and was a little concerned.  Since April we had been seeing her brain ventricles grow a little bit, but was managed with shunt adjustments.  Now that he looked over all of her ultrasounds, he was more concerned that he had been.  He wants to do another sleep study to see if her breathing has changed since the last one we did back in December.  She had been gagging more than normal and more spitting up, which can be a side effect from her Chiari, and ultimately a reason to do a shunt revision.  I'm hoping that it's unrelated and just due to feeling a little under the weather, but I also think we're heading closer and closer to a shunt replacement. *insert sad face*

It just really reminds me that no 2 Spina Bifida kids are alike and it's almost as if we're dealing with a condition no one has seen before.  It's so unique to Leah and what works for 1 kid doesn't work for another.  It's also not a cut-and-dry condition.  For now her head is still really soft and can accomodate a little excess fluid if her shunt is not working as well as it should.  So its appropriate to wait and see right now.  How often have I said "wait and see"???  Le sigh.  That's ok, I just keep reminding myself that it's better than the alternative and everday we can keep this current shunt is a good day.

It's Summertime!

On Monday we had our usual check-up with the neurosurgeon and our Spina Bifida doctor.  Back in April we got some disappointing news that her shunt wasn't working very well, so we had been coming back every 4 weeks to see how things were going.  I am delighted to say that we had a great appointment this week, and her ventricles were slightly smaller than they were last money.  WOO HOO!!  Our neuro was a pretty surprised by that.  We had adjusted her shunt again down to 50, which must have done the trick.  It makes me thankful that we didn't go in and replace it back in April, and why our team wanted to be conservative.  We would have done surgery when we probably didn't need to.  Things are looking good with her, so we don't need to come back until September.  Thanks for all your prayers and support... I think it's working!

We've been having a great summer so far! It's great being a 10-minute walk to the beach, so we've taken Leah to the lake a few times. She loves it :) We're also feeding her more foods, and she's eating everything we give her, though sometimes I can tell she doesn't like it. So far, her favorite is a plain piece of toast. She also liked peaches once but didn't the other night, same with the pear/applesauce I made. 

This morning our little community had a Kiddie 4th of July parade.  It was sooooo hot!  But we went and saw lots of kids on their bikes, in wagons, strollers, walking down the street.  It makes me love our little town even more.  It's too bad it was too hot to do anything else outside today. 

Enjoy some pictures of our summer fun. 

Swimming in the lake with Daddy

On the fire truck at the 4th of July Parade

Fun at dinnertime

Reflections

Have you ever wondered what it feels like to run into a glass door?  We've all seen those clips on America's Funniest Home Videos, kids running into a screen door; people not realizing their door was shut, or that there was a door at all.   One minute you're strolling along, minding your own business, thinking about the weather and what's for dinner when ... BAM!!! ... next thing you know you're on the floor.  The contents of your bag go flying, your coffee spills everwhere, and you lay on ground thinking, WTF just happened?!  How did I miss that?  Your first thought is, am I hurt?  Then, how will I ever get back up again?  But you do.  You can't just lay there forever, so you pick yourself up, collect your crap, and get your bearings.  It may take a few minutes for the sting to wear off and your first couple steps have a hesitation to them, but eventually you're able to move on. 

Sometimes you literally do run into something you didn't see.  I am notorious for running into stuff, and I am embarrassed to admit that I actually did run into a glass door.  Ty and I were leaving a movie theater and I ran right into it.  Oops!  But there have also been times when I've been totally blindsided by something in my life.  And that's exactly what happened to us 1 year ago today.  I was 19 weeks pregnant, we went in for our big ultrasound and got the news that the our baby would be born with "many anomolies."  It was truly one of those moments in life when we were totally knocked on our butts.  I was very scared that we were going to lose the baby because initially they didn't give us a diagnosis.  They saw something on the baby's neck and spine that didn't look right.  We went back the next day for a level 2 ultrasound to see the baby in greater detail, and it was then that we got the diagnosis of Spina Bifida. 

We were completely caught off guard, knocked on our butts, the wind taken out of us.  It took us a few days to get our bearings, but we were able to accept what had been handed to us.  It didn't take long for us to look at our life and be so thankful at what we do have.  That's what gets me through, by being grateful and seeing all the positives, focusing on what we can control and some of the things that are just serendipity.

3 years ago we bought a 1-level house that has a flat driveway to the street.  We live in one of the best school districts in the state, one that offers Early Intervention for families, like ours, who have children with special needs.  Our neurosurgeon is one of the best... anywhere... period and he is a pediatric neurosurgeon.  Our Spina Bifida doctor has been seeing SB kids for most of his career.  He took our call when he was on vacation in the Cayman Islands.  It takes us 20 minutes to get to Children's Hospital, the best hospital within 500 miles.  Not long after we found out about our diagnosis, I was having lunch with a work friend and I happened to mention that Leah had Spina Bifida.  She actually knew someone whose daughter also had SB and introduced us, which I how we met our friend, 5-year old Addie.  Missy then brought me into the mom's group and got me connected with other SB families.  I also met another SB mom through my perinatologist, and she had just delivered her daughter a few months earlier.  The list goes on and on......

This was kind of an emotional day for me.  It marks the beginning of the scariest and darkest days of my life.  It's also the beginning of an amazing journey of getting to know people we would have otherwise never met, seeing incredible love and generosity and compassion from family, friends, co-workers and even strangers.  And it's also the first time I actually felt like a mom.... just the feeling of overwhelming love for this little baby, feeling like I would do whatever I could to protect her and make her better.   It's when we found out we were having a girl and named her Leah.... and it suddenly became very real.

I actually took the day off today from work.  I had to go into the office on Tuesday, my normal day off, so I was off today instead.  I took Leah to the Minnesota Arboretum.  We had a beautiful day, and it was great strolling around, looking at flowers and waterfalls.  She's such an easy-going and happy baby, I could have taken her anywhere and she would have had fun!  She's an amazing little person.  Spina Bifida is part of who she is and I wouldn't trade her for the world.  We still have a very long journey ahead.  I think every year on this day I'll celebrate Leah Day, the day when my life changed... for the better.  Sometimes we get knocked down but it's how we pick ourselves up that is the true test in life.