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.