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!

Happy Baby

We are so fortunate to have such a happy, smily baby.  She's gone through a lot in her short life, but she is the sweetest little girl.  We just lover her soooooo much!

Go Twins!

Close-Up

I love her profile

Playing with her toys

We Take the Good with the Not-So-Good

We had Leah's follow-up head ultrasound and appointment with our neuro today.  The ultrasound showed that her ventricles are slightly larger than they were 2 weeks ago, and her head growth is right in the normal range.  So the good news is that she doesn't need a shunt revision right now... the bad news is that we think it's going to happen sooner than later.  Her ventricles were slightly enlarged, but not so much that there is a definite answer.  Leah is in great spirits, she's eating and sleeping normally, she's not overly fussy or showing other signs of shunt failure. 

Our neuro was able to check to see whether her shunt is actually working.  He inserted a needle into her head where the shunt is and pulled out some fluid.  Leah did NOT like that (who would??)!  She had to lay on her side while I held her head steady.  There was a good flow of spinal fluid that came out, which is a good thing - it means that the shunt is able to drain - but he said that it didn't come out as quickly as a new shunt would have.  So again, some good news and some not so good news.  He wants us to come back in another 2 weeks to check ventricles again and see how things look. 

The obvious question is why aren't we going in right now for a shunt revision when it's inevitable?  The answer is because it's still working, albeit not as well, but our neuro team is fairly conservative and don't want to replace something that is still working for her.  We said this in November when we were deciding when to do the shunt that any day without a shunt (and now revision) is good.  She will likely have more surgeries for her shunt, so we want to do as few of them as we can.  If that means waiting even a couple more days, it will be worth it in the long run.

And so we wait some more.  This just makes me realize that there is not a single answer for how to treat her condition.  It also makes me really thankful for everyday we go without doing surgery.  Thank you to everyone who is thinking of us, praying for us, and supporting us.  It makes it easier knowing there are so many people out there rooting for us and our amazing little baby. 

Ups and Downs

We had appointments for Leah all day Monday, and it’s hard to say that we didn’t get the best news.  We started in Radiology with head and renal ultrasounds.  Then we went to the neurologist to get the results of her head u/s, and they showed that her ventricles are a little more dilated than they would like to see.  I had noticed over the last couple days that her fontanel has felt a little fuller than normal, which turned out to be pretty spot on.  The good news is that her head is still so soft that it can accommodate some extra fluid.  Her head size is still within normal range, as is the head growth rate. 

Our doctor adjusted her shunt pressure from 100 to 70, which means that it will work harder now.  A higher pressure means that the shunt waits until her ventricles fill with fluid more before draining.  If you remember, in December we had her shunt adjusted from 80 up to 100 because her fontanel was too sunken in.  Now it’s a little too full.  Apparently it is pretty normal to adjust it to see what works best…. She’s like GoldiLeah, trying to find the pressure that’s just the right fit.  We’ll go back in 2 weeks to have another u/s to see what her ventricles are doing.  If they are the same or better, then the shunt is still working.  If not, then the shunt is probably not working and we have to talk about maybe doing a shunt revision. 

After our visit with Neuro, we went to see our Spina Bifida doctor.  He reviewed the renal ultrasound (that looks at her kidneys and bladder) and she is very healthy there.  Yay!  Still no catheters for her.  I know we will be faced with that at some point, but each day without them is good.  He also reviewed the head u/s and agrees with our Neuro adjusting the pressure and seeing how she does.  He also wants us to come back in 2 weeks after her next u/s to see what the course of action is for her.  He told us that shunt failure for children under 1 year old is virtually 100% and then goes down dramatically after 1.  I think we are pretty darn lucky to have gotten so far on her first shunt…. 4 months!  I just hate the thought of having to go back to the hospital for another surgery. 

After the full day of appointments, we came home and vegged.  It’s a long and stressful day for all of us.  Just after 6, I finished giving Leah a bath and putting jammies on.  I could tell she was exhausted, so I put her down and she fell asleep by 6:30… not even a peep.  I’ve been feeling her soft spot constantly since Monday afternoon, and it seems a little bit better.  We also thought we noticed it drained well this evening.  Hopefully the adjustment did the trick, but I know a shunt revision is in our future at some point.  Even if it is still working now, the odds are against us that she'll make it much longer without it failing.  Until then, we just keep doing what we’re doing, and loving up on her… which is soooo easy to do!