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. 

Getting So Big!

Look who's growing up!


Yep, I'm 7 months old.

I can sit up all by myself.

Avocado and sweet potato... mmmmm

I'm such a happy baby!

7 Month Milestones

Life with Leah has kept us pretty busy lately.  We officially have a sitter!!  She sat for the first time on her own the other night.  Ty kind of let go of her as she was sitting up on the kitchen counter.  She put her hands down and supported herself.  Then we put her on the floor with a pillow in front of her for a little support and she was very steady.  Pretty soon she’ll be able to do it all by herself without any help.  She’s also been practicing baby sit-ups with Daddy.  She grabs onto his fingers and pulls herself up.  We’re so, so, so, so proud!!  I expected her to meet her cognitive milestones on time but had kind of prepared myself that she wouldn’t meet all of her physical milestones.  She proved me wrong!!!  At not quite 7 months old, she’s on her way to sitting up all by herself, which is beyond our expectations.  I could tell she was pretty proud of herself too, it was so cute.  I hope she continues to exceed our expectations!

We also have some fun news about our family.  Leah is officially a big cousin!  She was the baby on the Cunningham side for 6 months and now we have another nephew.  Congratulations to my brother and sister-in-law on the birth of Colin Michael, who was born on Tuesday and joins big brother Shane.  He is the 5th grandchild and the 4th in 18 months.  Between my 2 sisters-in-law and I, we’ve had a baby every 6 months since November 2010.  Family get-togethers are going to get louder and crazier but so much more fun.  I can’t wait to get my hands on the little guy!

On Tuesday we had our usual day of appointments.  We started out getting head and renal ultrasounds, and then we went to get results of the head u/s with our neuro team.  The good news – her ventricles aren’t getting bigger and her head size is growing at a normal rate.  The bad news – her ventricles are larger than our neuro team would like to see.  That could just be that she has bigger ventricles, or it could mean that her shunt isn’t working as it should.  I’ve said before that our neuro team is very conservative, and they have a hard time justifying putting her through shunt surgery if it’s still working.  She is in good spirits, eating and acting normally, so it doesn’t appear to affect her.  We’ve now had 3 appointments with little to no change in her ventricle size, so we come back in another 4 weeks.  I think they are leaning more and more towards replacing the shunt.  He did an adjustment to her shunt and moved the pressure down to 50, but he isn’t very confident that it will make much difference.  We just have to wait and see.

Then we went to Spina Bifida clinic for the first time.  Usually we just see our regular SB doctor after our neuro, but this time we went to clinic.  At clinic there are 3 doctors – the SB doctor, the kidney/bladder doctor, and the physical therapist doctor.  Clinic is a way for kids to see all of these doctors at the same time and for them to compare notes and discuss treatment plans together vs. having to see all of them individually.  It’s great to have a team approach and see everyone at once, but it makes for a long afternoon and a lot of waiting.  Leah’s renal u/s looked great again, which means she has very healthy kidneys.  This is very important, as people with SB are prone to UTIs and can have a lot of trouble in this area.  Our #1 goal right now is to keep her kidneys healthy, and it’s working.  A lot of SB babies also need catheters to empty their bladders, and we are very fortunate that we don’t have to do that yet.  As she gets older, we’ll need to potty train her differently, but we have a few years before we need to think about that.  Overall she is in good health and is growing nicely.  Dr. Marker, the SB doctor, told us we can feed her as much as we want until she turns 1, and then she’ll need to be on a skinny diet… LOL!  But in all seriousness, this is an issue with children who aren’t mobile.  We will need to make sure she eats healthy and manages her portions.  Being thin will help her maintain her overall wellness but will also help her mobility.  It will be much easier for her to walk when she’s not overweight.  This is something that will be very important to her and us as a family.

Speaking of mobility, we also saw the rehabilitation doctor for the first time.  There isn’t much for physical therapy to do today, but it will happen quicker than we think.  Things are looking very good on the physical side.  She does not have much movement below her hips, but she is very strong in her upper body.  She has great head and neck control, and has strong arms.  All of this is very important for her to start pulling herself up, rolling over, sitting, and then crawling.  She gave us some suggestions of things to use with her as she starts to crawl that will help with her movement. Leah’s legs are very good, nice and loose.  Her left foot is a little tighter than she’d like to see, but stretching that out will make it looser.  We need her feet to make a 90-degree angle so she can fit into the orthotics that will help her stand and eventually walk.  We’re very thankful she doesn’t have club feet or tightness in her legs and feet, as that could require surgery.  All in all, we had a very positive day, still some concerns with the shunt, but she’s doing great otherwise.

Last weekend we participated in a charity 3K walk for the Children’s Hospital Neonatal Intensive Care Unit (NICU).  We were among over 100 other families who have spent time in the NICU.  We saw lots of multiples (twins, triplets), preemies, and other kids who needed surgery like Leah did.  We also saw a family who has a daughter with SB that we had met at the picnic last September.  It was nice catching up with them.  Their daughter is 3 and her lesion is L2-3, just like Leah’s, and this little girl can walk.  I love seeing other kids who have the same lesion that Leah has because it gives me so much hope that she’ll be running around, too.  We walked around and saw an incubator bed and a rocking chair, just like they have at the hospital and it brought back lots of memories and emotions for us.  It’s really weird to think back at that time that we spent at Children’s, both when she was first born and when we went back for her shunt surgery.  It almost feels like it didn’t happen and I wonder how I got through it.  But then I look at Leah and realize it was all worth it. 

Wow, another long update.  I have had people request more pictures.  Come back in a couple days and I’ll get some news ones up.  Also, please consider helping with the Spina Bifida genetics project that I posted about last week. 

Leah Needs Your Help!

We need your help!  Recently I heard about a study that is looking to identify genetic factors that influence Spina Bifida.  I filled out a quick, easy and confidential online survey and then provided a saliva sample from both myself and Leah.  This project also needs moms who have babies without Spina Bifida.  If you are willing and able to help, please click on this link! 

http://sbgenetics.org/enrollment.html

I’m hopeful that someday a new mom will never get the heartbreaking news about her baby.  I’m even more hopeful that someday there will be ways to reverse some of the effects of Spina Bifida.  Maybe Leah will be able to walk all on her own!  Maybe she won’t ever have to think about a shunt revision!  I can only dream.

Little Miss 6 Months Old

It's hard to believe our little baby is 6 months old.  So much has happened since that day in November when she decided she was ready to meet us... a few days earlier than we expected!... and she's been surprising us ever since. 

We've been really busy lately with lots of appointments.  We went back last Monday for our routine ultrasound and appointment with neuro.  We usually just see the neuro nurse assistant but this time our neurosurgeon, Dr. Nagib, came in to see us.  They saw that her brain ventricles were a little more enlarged since last time and that her head growth was in the normal range.  She seems to be in good spirits, eating, sleeping and acting normally so they decided we don't need to come back for 6 more weeks.  It's been tough coming in every other week - it's a stressful day, it's time-consuming, and we get so nervous about what kind of news we'll get - so we're thankful not to be coming back until mid-June. 

Last week we had another Cranial-Sacral therapy appointment.  Her therapist commented that her she was really tight through her hips and legs and had to really loosen her up.  I know that's because we haven't spent as much time as we should on her physical therapy lately.  She's been really tired at the end of the day and now with the teething she's been fussier than normal.  But it's a good reminder that we need to be working her legs as much as we can, and shows just how important that daily activity is.  Even a few days of not doing those exercises affects her.  Last week we also took her to the eye doctor, and her eyes look really good.  There was some concern with drifting back when she was a tiny baby, but that has cleared up very nicely.  We will continue to see her eye doctor every 6 months to make sure her eyes stay healthy.  Since she has hydrocephalus, it's important to make sure that added pressure isn't affecting her eyes.  So far, everything looks good (yay!) but this is just another thing that goes along with her Spina Bifida.

Then finally we had her 6-month check-up with her pediatrician.  Everything seems to be right on track with her development.  She's doing everything he would expect her to do at this age - she's moving toys from one hand to another, looking up when her name is called, and starting to remember a toy when she drops it.  It is really nice to hear that she is meeting these milestones.  But this is when we start to see that she's not meeting the physical milestones.  She isn't rolling consistently, so we have to work harder with her tummy time.  And things like pulling herself up or starting to crawl aren't going to happen "on time."  All in all, though, we couldn't be happier or more proud of how she's doing!  For her stats:  she's 15#, 26" and head size of 42 cm.  When she was first born, she was barely on the charts b/c she was pretty small.  Now she's at the 50th %ile for length, 30th for weight and 25th for head size.  YAY!!!  I can tell, just in the last couple weeks, how much heavier she feels and that she's putting on the weight.  She has chubby little arms and legs and her face is getting rounder.  And she's getting so cute!

Now we're on to teething!  This past week she's really been working on those bottoms and I can tell they really bother her.  She has been fussy and really drool-y so I hope they come through soon to give her a little bit of relief.  Although, I kind of want them to stay away for a little while longer... there's nothing like a gummy, toothless grin!  We also started giving her solid foods.  On Saturday morning I made some oatmeal.  She was more than willing to open wide but then wasn't quite sure what was going on when she realized it tasted different and had a new texture.  She got a little more oatmeal last night, and seemed to kind of get it a little more.  I bought a sweet potato and an acorn squash that I'll give to her later this week or weekend.  It's so much fun to watch her try new things. 

This weekend was also my 1st official Mother's Day.  Last year I was about 12 weeks pregnant so we had a little celebration but this year was so much better.  Ty cooked breakfast for me, we went to church and then went down by the lake.  It was a beautiful day, we had lunch in a cute little place and walked around town.  I couldn't have asked for a better way to celebrate being a mommy.  Then we grilled salmon and lobster tails for dinner and finished off the evening with some chocolate cake and ice cream.  Yummy!!!  Being a mom is so much better than I ever thought it could be.  I couldn't imagine not having this little baby in my life, I just love her so much.  And it doesn't hurt that she's the cutest baby with the best little personality. 

Whew, that was a long update!  I'm happy that we don't have any appointments coming up for a few more weeks.  We're just going to enjoy this beautiful late-spring weather and our 6-month old baby girl!