Monday, March 21, 2011

Clinic day

It's been a couple of weeks... but a lot happened at clinic.

UROLOGY. We gave the urology nurse our summary. She said we're doing everything right (if she only knew!), and she quizzed Esther-Faith about cathing. Because our use of bladder washes has kept Esther-Faith off antibiotics for UTIs, she prescribed some more. Esther-Faith will be assessed for Ditropan. She'll have a renal ultrasound, VCUG, and urodynamics test in mid-April. Boom. Boom. Boom. One right after the other. It should be a fun day. And I TOTALLY see a trip to Build-a-Bear in our future.

ORTHOTICS. Esther-Faith is GROWING. Her KAFOs had to be "grown" by an inch. This will be the last growth for this set of KAFOs--then we'll need new ones. And I feel like we just got these ones. While we were there, Nick (SUPER orthotics guy--he totally needs a cape or something) took a look at some of the things that were concerning us. He adjusted, and tweaked, and bent, and twisted until he got it right. The appointment was long, but I tell you what, I like Nick MORE AND MORE every time we need something done for her orthotics.

WHEELED AMBULATION. Esther-Faith's wheelchair ALSO had to be "grown" at clinic. The footrest was moved down and the seat moved back. All while we were there at clinic!

BOWEL MANAGEMENT. We talked again about the cecostomy. Again, after last year, I seriously hesitate to VOLUNTEER my child for another surgery. And really, if we decided to do it, we might have our first all-out rebellion on our hands. We'll see.

NEURO-PSYCHOLOGY. The exam will be scheduled. Although, nearly every practitioner who met our daughter--from developmental pediatricians to clinic nurses to the social worker to other doctors--all agreed that the exam was really a formality. It is PRETTY CLEAR that our daughter struggles with attention, hyperactivity, impulse control, and staying in her own space. All things we adore about her. All things that could make kindergarten a little difficult next year.

OCCUPATIONAL THERAPY. Esther-Faith will start to work with an occupational therapist to help her get stronger in her "trunk" (Cassie: apparently Ab RipperX doesn't count!) so that she can continue to develop her cathing skills. She nearly has the routine down, but there are two things that she still struggles with. Getting her pants down and getting the catheter in. The catheter part will come with time, patience, and practice. The balance to get her pants down is where the OT will help. We hope. Cause I really can't even wrap my brain around TWO possible surgeries.

PHYSIATRY. I took my laptop with the video of Esther-Faith taking tiny, tiny steps by herself to show the physiatrist. I wanted her to know that not only did she learn to walk with crutches, but also she learned to walk WITHOUT them. We've been using borrowed crutches. The physiatrist prescribed Esther-Faith her own. It was a small victory, but a victory none-the-less.

SOCIAL WORK. We met our third social worker in five years. I liked her, but really, I'm going to try not to get attached. She asked us lots of questions about Esther-Faith, our family, etc... We talked about our family dynamics, the boys, etc... Coincidentally, Isaac had just been kicked off the bus that week, and Isaiah was getting into his own brand of trouble at his school, so the social worker had another social worker friend give us a call. These sorts of things always make us chuckle. By the time the call came, Isaac had earned his way back onto the bus and Isaiah was in all sorts of different kinds of trouble. The issues of that morning were nearly forgotten.

ORTHOPEDICS. Prior to clinic, Esther-Faith had some hip x-rays done. They show a little bit of something (the word escapes me now), but nothing serious--just something to monitor and follow. And she has tibial torsion. I don't know for sure what that means, but her left foot turns in when she walks and apparently the turn is in her tibia. In "typically developing" children, the condition almost always corrects itself. In Esther-Faith, (as with most things with her) we'll watch and wait. The doctor said it *could* mean surgery, but not for many years.

I'm sure I'm forgetting something.

Esther-Faith danced with Nick in the hallway.

She hid from Tim when he wanted her to come back to the room.

While we were talking to doctors, she introduced herself to the other patients IN THEIR ROOMS (see Neuro-Psychology note about personal space).

She charmed all the medical professionals--even when she was being sassy.

She answered her own questions.

She took off with one of the wheelchair guys' tools.

She asked me if she was being brave enough for a surprise.

She took the light from the developmental pediatrician and examined HER ears.

She acted like the sassy, little princess that she is.
Even when she wasn't getting her own way.
Which if I'm honest, is pretty much ALL of clinic.

Wednesday, March 16, 2011


Well, things are always crazy arent they. Looks like we just lost SSI because of the shirt sales, something with transfering the money from paypal to pay for the order of shirts. But you know, God is providing and I believe we should be set up soon with the Medically Dependant Children Program. We might have lost a couple of hundred bucks a month, but you know looking at all of this. its worth it. and I'm really NOT going to miss dealing with SSI! Do keep us in your prayers as we are trying to transition seamlessly. and dont feel bad, it would have happened anyway when we got our tax refund. its just life. : )
And this is why it's worth it:

Looks like the Spina Bifida Shirts, hoodies, totebags and onesies have raised an amazing 1,000.00 USD!
Pretty amazing if you ask me!!
Congratulations to all of you. I think this is huge. Remember we've spread our message, we've supported our kids and we've given a nice chunk of change to the spina bifida association of central florida!!

I think thats pretty awesome.

And I love seeing Toby with his shirt on. Just today he asked me why he's got to wear leg braces, before I might have avoided the word spina bifida. I might have avoided that title with him, but now its just a word. a word that we are totally completely redefining. So yup, we might have some spina bifida over here at our house, but we are kicking it's butt. : )

love you all and congratulations again. If you hadnt spread the word it wouldnt have been this amazing!

Saturday, March 12, 2011

Common Ground

A few weeks ago, I finally took the time to write about "That Night"...the night we found out about Brooklyn's Spina Bifida. As with many of you, I was 18 weeks pregnant and totally shocked by the news. And like all of you, my world was changed forever.

I had been wanting to write about that night for a while, but it wasn't until I decided to audition for this show that I finally made the time. My challenge wasn't writing my story -- that was buried in my soul, just waiting for the moment I wanted to put it on paper -- the challenge was taking my story and trying to apply to motherhood in general. Finding the common thread between my story and every other mother's story.

At first, I put it off. I honestly didn't know how I was going to find that common thread without forcing the issue or creating some cheesy conclusion. But as I sat down and relived that night, the answer came easier than I thought it would...

Every mother hurts for their child, no matter what the trial. Yes, our children will have more trials than most, but as I know from my other two daughters, every trial is significant to a mother...whether it's a scraped knee or a casted foot. And that realization did more for my soul than I ever imagined.

So often we talk about how we want people to accept our children for who they are and to not focus on the differences. Shouldn't we do the same for others? It is so easy to fall into the pity trap and isolate ourselves from our friends who can't possibly understand what it is we go through on a daily basis. Because they don't understand. How could they?

But we can't focus on that. It is just too lonely.

Yes, we need to find support groups and web sites like these so that we can feel understood, but we also need to be intentional about maintaining those friendships and relationships that are different.

I'm not saying it won't be hard. I have several girlfriends -- and siblings! -- that have children the same age as Brooklyn. Watching them grow together and reach their milestones at different times will be challenging and probably heartbreaking at times. But I can't let that keep me from enjoying and maintaining those friendships for myself and, better yet, for Brooklyn. How awesome is it that she will have a built-in group of Christian friends and cousins that I know will love her unconditionally?

I also think it is okay -- and emotionally healthy -- for us to let those friends into our world once in a while. It is easy to put on our strongest faces and let out a convenient "fine" when they ask how things are going, but that doesn't help anyone. If they truly want to know, let 'em have it, and I think you'll be surprised at how they react.

Now, I'm not saying we should walk around with a sob story on our sleeve, but if we're having a "SB sucks day" and someone happens to ask, a true friend will listen. She might even cry. And that, my friends, is what friendship and support is all about.

I truly feel God put different people in our lives for a reason. And just as we are learning through our beautiful children, those differences are often the biggest blessings.

~Lisa (@ Heaven Sent)