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!!