the lovell crew

This past weekend John & I decided to take Faith on a “date” by herself.  No longer being an only child means you get less of mommy & daddy’s time, so I wanted to do something special that she would love

After much debate on what to do, we decided to take her to see a movie. Winnie the Pooh to be exact. If you know my oldest daughter at all, you know she is a die-hard Dora the Explorer fan. Unfortunately for her, Dora wasn’t on the big screen this weekend. We weren’t sure what she would think of this yellow bear with his pot of “huny,” so we decided to do a little prep…

We read lots of Winnie the Pooh books.

We played Winnie the Pooh “video games,” on her Little Leap player.

Finally, the big day arrived. We dropped Zoe off at Nana’s house, and off we went. Loaded down with popcorn, drinks, & “yummy” bears (i.e., gummy bears!) we were set. Faith had her coolest gear on…

I’m happy to report her first animated film was a success! We made it through the entire thing, and she still remembers that “Eeyore lost his tail.” Sorry to any of you Pooh fans if I ruined the plot

After the movie, we made a trip to our favorite store…Target!  We picked out LOTS of new “big-girl panties,” for our new undertaking–potty-training! Yes, starting this Wednesday we are beginning some hard-core potty-training. Say a little prayer for me

Of course, no trip would be complete without something fun to take home. We picked out Play-dough, and our first go-around with it was a SUCCESS!

We had a great time hanging out with our big girl, and letting her be “only child” for the day.

But…

Our girls were definitely glad to be reunited that evening! In celebration, we busted out matching Dora jammies…

Several weeks ago, I received a message from my former pastor, whom I call Bro. Steve. Actually, I still consider him my pastor–he was my first pastor, baptized me at the young age of eight years old, & as I grew up I developed a wonderful relationship with he & his wife, Laura, as well as their three children. Some of my most tremendous spiritual growth as a Christian occurred under their leadership, & I do miss them dearly.

Anyway, Bro. Steve contacts me to request permission to use our family’s story in an upcoming sermon he was doing on abortion. Now, I have always been pro-life, long before I had my own babies. However, after everything we experienced during my pregnancy with Zoe, I can totally understand why some women choose abortion. Thinking back on last summer, in those first few days & weeks after we knew of her diagnosis, I would be lying if I said I didn’t wake up sometimes wishing I had never gotten pregnant in the first place. Although I could not terminate a pregnancy, I understood at that point why some women would.

I thank the Lord every time I kiss my sweet baby’s face that He allowed me to have peace during such an uncertain time, and that we chose LIFE. I still remain pro-life, just with a new perspective on what some of these women are struggling with.

With that said, I love sharing our story & so of course I told Bro. Steve that, yes, he was more than welcome to share our story. Being a part of a community of moms with children who have spina bifida, we see new moms join all the time who are just receiving their child’s diagnosis. The fear, grief, and uncertainty is evident in their words, and my heart breaks for them as I think about when I was that mom struggling to come to terms with the new twist in our journey.

Many are in that place of contemplating whether or not to continue with the pregnancy. Doctors so often try to predict the child’s prognosis based on pictures from an ultrasound screen, and so many babies are aborted due to mistaken ideas about their child’s future quality of life. My heart hurts for these parents, because even though doctors possess a wealth of knowledge, there is a higher power who has created that child. And has big plans!

It’s so difficult to forge ahead, not always being able to see what those big plans may be just yet.

I can promise you–this little lady has an awesome quality of life!

Swimming…

Having tea parties with big sis!

and figuring out how to go places…

Here is the link to Bro. Steve’s church in case you want to check out his site or listen to his message. Here’s the video from that Sunday, with a neat video of our family & part of Zoe’s journey at the end…

Lately I’ve become addicted to google reader. It’s an awesome site that google offers (what DON’T they offer?) that allows you to enter in the site of all your favorite blogs, and it keeps you updated any time one your blogs’ has a new post. I have many blogs that I follow, & I’m always in search for more great ones

Recently, I came across this quote on a blog I follow that got me thinking….

It’s been a long time since John & I had an entire weekend all to ourselves. While I am always a little nervous about leaving the girls for an extended stretch of time, it will be nice to be able to relax, sleep in, & eat an entire meal at once Thanks to some awesome grandparents, John & I will be away for a few days, & this will be our view…

Well, not that exact view, but you get the point! We’ll be at the LAKE…

My weekend plans consist of eating lots of yummy food, sleeping as late as I want,  trying to turn my pale skin into a nice golden brown (oh how I miss the days of endless suntanning by the pool! Yes-bad for your skin, I know ) I might even be coerced into trying some water-skiing & tubing…after all, I only have three months to live it up while I can still say I am in my 20′s.

The big 3-0 is right around my corner…we’re not even going there tonight

It’s funny how life is backwards sometimes. The older I get the more I realize I don’t really know anything. Not like I thought I did. When I was a teenager, I thought my mom was nuts sometimes. Now, I think she knows everything

When I first got married, I thought my husband didn’t know how to do anything the way I thought it should be done. Now, I realize that yes, sometimes he actually has some pretty decent ideas.

Before I had kids, I would see weary moms pushing shopping carts in Kroger & think, “my kids will never…” If you need any proof that I have become that mom, click HERE.

Fast forward several years, throw in a husband, two kids, a dog, a house, a full-time job, and oh yes, spina bifida, & it’s amazing I don’t have a gray hair…yet.

Lately I’ve been thinking maybe the Lord just wants me to learn patience on this journey. That I don’t need pre-conceived ideas about what I would or wouldn’t do in a situation I’m not yet in, that I don’t have to control everything, or that maybe instead of ME helping make MY family into something, HE’s making ME into something.

It seems there’s something about unexpected twists in life that either make you throw your faith out the window, or realize you can’t make it on this road alone.

I’ve been reading from my old devotion book-Streams in the Desert lately. I’d been having one of those days where you wonder why in the world you would choose to serve a God who does things that don’t really jive with your plans. Who lets things happen that you don’t think should happen. Like, why in the world would I love & serve a God who allows my child to have challenges right from the get-go?

It was that night that I dug out my book, and came across this quote.

“The only way to know strong faith, is to endure great trials. I have learned my faith by standing firm through severe testings.”

-George Mueller

I realized that night, that I don’t want to be the person with the shallow faith. I used to think I did. I wanted things my way. I knew best. Slowly, I am realizing that maybe God chooses to give me alternatives to the things I once thought I needed or wanted, & yes, maybe initially I think it’s wrong, or maybe He’s mistaken, or not trustworthy at all. I start to question things.

But as time goes on, I gain a new perspective. I gain patience. My faith gets stronger. I realize, that the things I never dreamed I would want or need, are exactly perfect for me.

Every Friday morning since Zoe was about six weeks old, we pack our diaper bag, load the car, &  head to therapy. Prior to her birth, I knew enough about the benefits of therapies-PT, OT, speech, developmental, etc., to refer patients but that was about it. Since her birth & our eight months in I feel like I could get an honorary degree in therapy! After seeing her progress first hand and learning lots of cool techniques, stretches, exercises & tricks, she has made tremendous progress developmentally & I am loving watching her grow.  I thought I’d take a few moments & share exactly what we are doing with her.

Before Zoe’s birth, John & I decided we wanted to be aggressive with the therapies we added for Zoe, as long as it worked well for our entire family. Fortunately, we’ve been very blessed that our work schedules have allowed us to incorporate several therapies per week without interfering with work or family time.

After her birth, we started the process of enrolling her in Kentucky’s First Steps program. This is a state program that provides early intervention for children with developmental delays or who are at risk for delays. With this program, we have a team consisting of John & myself, our therapist, & our service coordinator. We meet regularly as a team to set goals for Zoe & evaluate her progress. Her goals so far have been basically the typical baby/child milestones. Some of her new goals for 6-12 months included transitioning to a sippy cup, independent sitting, & crawling. Her therapist is a developmental interventionist, and she visits Zoe at our house once a week for therapy, which is basically playtime. Faith thinks it’s playtime for her also, and she’s managed to snag a few jelly beans out of the process

Once we got that service squared away, we began the search to add physical therapy. We were unable to obtain any PT services through First Steps due to our rural location, so we started looking elsewhere. Thankfully, the corporation I work for has an awesome rehab department we were able to get Zoe in with fairly quickly. We have since gotten to be close with our therapists; after all, they see us every Friday morning at the same time. There’s me, lugging in my giant diet coke in one hand, Zoe in another, diaper bag slung across my bag filled with all the “regular” baby stuff, plus AFOs (i.e., ankle braces), kinesiotape, baby glasses…we’ve had diaper blow-outs, meltdowns, teething troubles, spit-up, basically anything & everything happen in PT. They’re like our second family

At about three months’ old is when we started having some visual concerns for Zoe. She didn’t want to track close objects, or smile at our faces when they were close to hers. An opthalmology exam found she was farsighted, hence the reason for her baby glasses now, but thankfully her vision is improving. We added occupational therapy at that point to help her visual-motor & fine motor skills progress, and thankfully she has progressed by leaps & bounds in this area! Our PT & OT have a system called co-treating, where basically OT works with hands & oral/visual skills, while PT works on gross motor function. All at the same time. It’s pretty neat, but it basically looks like Zoe is just a pampered little baby with all this attention she gets

With all these therapies, it’s hard to not get addicted to it. If there’s a problem, there should be a therapy for it. It’s empowering to learn how to work on something & then see progress from your efforts. It’s so exciting to get to celebrate each milestone Zoe hits because I know just how hard she worked for it-week in & week out. Before we knew her vision was improving, I even discovered vision therapy. What?!? Who even knew that existed? Well, it does, and we briefly considered adding it for Zoe but decided to wait & see how her vision continues to progress.

Our latest thing we have been working on in therapy is weight-bearing. Zoe is getting to the age where babies become interested in being upright, in learning all about the world around them. She is close to mastering sitting, and has become a pro at tummy time & rolling, so now we have to tackle our next big challenge-her knees. Since Zoe’s birth she has never been able to bear weight on her legs when we hold her upright. This is extremely common with spina bifida; it just takes these kids a little longer but they get there in their own time. Putting weight on the legs strengthens the muscles, stimulates bone growth, and makes for stronger joints. Since Zoe got her AFOs & we’ve been using her jumper, we’ve seen a noticeable increase in her leg strength, and she’s started locking her knees very briefly.

So our next step is this stander. Standers basically function to help a child learn to stand. It basically supports their upper body while locking the knees in place, so they get all the benefits any other child would from standing up. Over time, as the child grows stronger, you slowly decrease the amount of support they need until they are strong enought to stand up without it. A long process, but worth the wait!

It’s a marathon, not a sprint, right?

Sometimes it’s weird for me to think this is my life. That I now know things about neurosurgery, urology, & orthopedics I never dreamed I would know-especially without an M.D. behind my name. Or that I know the different parts of a VP shunt. Or what exercises will best strengthen which muscles. Or what all these letters-AFOs, SMOs, HKAFOs all mean. Or that I enjoy taking my daughter to PT/OT on Fridays. Just weird.

But I love it!  And I love this hard-working, chubby-cheeked patriotic baby who couldn’t be any cuter or more determined. Because I’m pretty sure if I had to drag myself out of bed at 8 am on a Friday morning to do push-ups, crunches, &  tons of other exercises I wouldn’t be a happy camper. But Zoe is, and she just keeps going.

Although every girl needs a few moments to chill out by herself after a hard day at play…

Faith recently made her very first solo trip to her mamaw’s house in eastern Kentucky. John & I felt she was old enough to make the trip this year to spend a week with her other grandparents. Zoe-being only eight months old, got to stay home & have mommy & daddy all to herself

Faith got to try out her new playhouse…

Swing as high as she could go…

Swim in the “big girl” pool…

and finally…

sisters reunited!!

Seriously…could they be any cuter? Life doesn’t get much better than this….;)

Lately it seems as though every time I blog, I am mentioning how busy our weeks are. Maybe that should be a red flag! Anyway, this past week was our (hopefully) last super busy week for a while.

Zoe had her three month check-up at Vanderbilt on Monday. Every time we go, I am excited to show off the progress she is making, but yet, it is never far from my mind that we could receive news we don’t want. I was particularly nervous about this visit because it was our first follow-up with the ophthalmologist about her vision since she’d gotten glasses,  & it was also her first urodynamics study with the urologist.

First on the schedule was the urology appointment. In kids with spina bifida, often the nerves to the bladder are affected-especially in kids who’s lesion level is pretty low. We don’t know the exact vertebra that was affected with Zoe, but we know it is low so we’ve expected some bladder issues. Urodynamics studies are performed routinely to get an idea of how the child’s bladder & kidneys look. The ideal situation is a normal-pressure bladder, no kidney reflux, & the ability to empty the bladder completely. Lots of kids without spina bifida have kidney reflux, where urine travels backward into the kidney. A lot of kids outgrow this as they get older, but kids with spina bifida are susceptible to having reflux, especially if their bladder is high pressure.

Zoe did awesome during her test; she loved the nurse practitioner (maybe she has a thing already for nursing since mommy is an NP ). The test lasted only about thirty minutes, and involved placing a catheter in her bladder to fill it up, measure pressures, & using x-ray to see if any reflux was involved. She was not a fan, however, of having to lay still for the procedure & kept wanting to kick the tubing they were using until finally we had to hold her legs still. Mommy is VERY thankful to have that problem

Our results were pretty good overall. Zoe has a normal pressure bladder (yay!) & healthy kidneys. On one side she did have some mild grade 1 reflux (it’s graded 1-5, with 1 being the mildest & 5 being most severe). Our urologist seemed to think she will outgrow it with time since her bladder pressures were normal. She started Zoe on a prophylactic antibiotic to prevent urinary tract infections, and now…we wait. Zoe will continue getting an ultrasound of her kidneys at each of our three month check-ups, and periodically we will repeat the urodynamics study to check for any changes.

The rest of our check-up visit went very smoothly. We made it to all our appointments on time-our PT & OT there were very impressed with the progress Zoe made since her last visit in February. She’s now rolling over like nobody’s business & we are getting close to sitting unsupported. Orthopedics was a pretty uneventful appointment, & we didn’t even see neuro as we had no concerns & he was out that day anyway.

The BIG news, that I was super excited about-Zoe’s vision is getting BETTER!!  Ophthalmology said he could tell a dramatic difference in her eyesight which is great news. For now we continue having her wear her little glasses, which I am totally okay with. I have grown quite attached to them over the months-I think they add some baby character & individuality

In other news, Faith is now officially a big girl! John & I debated for some time on when to make the big switch to a toddler bed. It was assembled & waiting in her room. Being a self-described type A control freak, I hate transitions of all sorts so I kept putting off the new change, that is, until John called me at work one day to tell me Faith got OUT of her crib. Yep, she escaped. That night became the first night in her big girl bed, and she loved it. Zoe moved from the pack n play to the crib that night, and the rest is history. Potty-training, however. Another story (I’m open for ideas )

I have discovered something new I love this past week. Since Faith has moved to her big bed, she has discovered how fun it is to snuggle up under the blankets in bed. Of course, I’m taking advantage all I can while she actually wants mommy around. She loves to have me or daddy snuggle up & sing songs (of which Old MacDonald is currently the favorite), or play with all her stuffed animals.

The rest of our week concluded with work days, a few random appointments, & a couple cold viruses. But all is said & done, and this week is shaping up better so far. The girls have a big weekend planned at the grandparents’ house, which means….it’s DATE NIGHT

It’s only May 6th, & already our month has been jam-packed! I’m not sure why things are so crazy, but they sure are!

Last weekend we attended Kentucky’s first ever Spina Bifida mini-conference. It was AWESOME! I have to admit, I am very thankful we live in Kentucky because our state really does have some amazing resources for kids like ours! The girls spent the weekend getting spoiled at their Nana & Papaw’s house, & we headed to Louisville. We attended some fantastic seminars taught by neurosurgeons, urologists, even a developmental pediatrician who heads up the national Spina Bifida Association, AND has spina bifida himself (that one was our favorite!).

That weekend we also had the opportunity to hear a keynote address given by a 19 year old with spina bifida…his name is Aaron Fotheringham & he’s basically like a spina bifida celebrity! He is the only person in the world to have ever completed a double backflip. In. a. wheelchair. Aaron shared his amazing story  & had such a great perspective on things. I even teared up a little during his standing ovation.

This past week we’ve also been busy in PT/OT with Zoe. Since birth, her right foot tends to turn inward. She can move it, but the muscle groups on the right side of her leg are weaker than the inner muscles, so that makes her foot tend to go in. We had her tiny pink AFOs fitted to try & correct it by keeping her foot in the correct position, but she is already outgrowing them & they were too tight on her heel.

So…this week we’re up to something new!

Kinesiotaping!

Using kinesiotape is something new to me. The best way I can explain it is that it’s sort of like athletic taping. Her therapists (who rock, btw!) used the kinesiotape on the weaker side of her right foot to help pull, stretch & strengthen those muscles. She will keep her ankle taped for 3-5 days, take a couple days off, then retape at our next therapy session. I’m excited to see if we get any results from this method. If not, we’ll try the AFOs again & our last resort would be casting her right foot for several weeks which our PT seems to think won’t be necessary.

Also, we have a baby who is starting to discover…mobility Zoe has recently begun rolling from her belly to her back, & is coming close to rolling the opposite way. She makes it over on her side, & then realizes she doesn’t want to go back to her belly, so she rolls the other way Here at our household, we have begun celebrating every.little.thing. The simple fact that she can move her legs to me is nothing short of a miracle, so I no longer take even the smallest of baby milestones for granted.

Another big deal at the Lovell household….

Being sisters

The girls are so funny (& cute!) together. Faith now wants to be wherever Zoe is, & always wants to sit with her, rub her head, & give her toys. Zoe looks for Faith when she hears her voice & laughs when she repeatedly brings over plastic Dora figures for a “Zoe kiss.”

I could sit & watch the two of them together all day long. I remember worrying so much about how Faith would adjust to not just having a little sister, but having a little sister who had spina bifida as well. I am finding all my fears were for nothing. They love each other so much. Faith could care less about Zoe’s spina bifida. It is really NOT a big deal to her or us (most of the time ) She’s just happy to have a little sister to kiss & love on.  And Zoe is getting pretty attached to her too.

When Faith turned one last year, I was a mess. I couldn’t believe my baby, the one we’d waited for, and prayed for so long to have was a year old old! I kept pouring over my photo books from her birth, remembering that day. Surely the birthdays to follow would get easier.

Well, for any new moms out there who might be reading this, let me tell you!

It doesn’t get easier.

I really was convinced I would not be emotional about Faith’s second birthday. After all, it is two. Not the first, not kindergarten, not her sixteenth birthday. Just two. The terrible two’s at that.

But while she napped, John & I snuck around decorating. Our house became a Dora explosion. The grandparents came bearing gifts. The cake was ready (& AMAZING )! Her swingset was assembled, the crab sandbox ready with sand toys, her picnic table covered in gifts.

Finally, she woke up, I got her changed into her Dora attire. No clue that everyone was there & waiting. Balloons decorated the birthday girl’s chair. She bounced around singing, “so happy, so happy,” & told me “no” a million times when I asked her if she was ready to leave her room. Finally, I convinced her to hold my hand, & off we went.

The party was a success, but the entire time she sat in her chair eating ice cream & cake, asking for more “Dora stars” (fondant stars) I kept wondering how did we get here? How is she two years old already? It’s true-I’m going to blink & she’ll be moving away to college.

My heart just can’t take it.

I don’t like thinking that the day will come when my babies won’t be babies anymore. When they won’t want momma to sit with them, hold their hand, play in their new color house, or watch Blues’ Clues. As a matter of fact, the day will come when they won’t even like these things anymore. They’ll be interested in clothes, make-up, boys. 

So, for today at least, while I still have the chance, I hold their little hands. We watch all our shows. We swing outside & play in the sandbox. I try to savor every little toothless grin & appreciate all the repetitive “mommy help you’s” that I hear.

Because I already hear Faith asking to sleep in her “big girl bed” & it’s never far from my mind, that yes, both she & Zoe are becoming “big girls.”

Happy 2nd birthday to my sweet Faith. I love you more than you could ever know.