An Overdue Update

It's unfortunate that I find myself updating this blog so infrequently, even now it's at the behest of a friend. The real problem is it's a mish-mash update and doesn't give the insight into life with a child with Spina Bifida that I was so hoping to provide to pregnant couples who just got their diagnosis, or parents of an infant with Spina Bifida, or even to update those who care about my family. Getting sucked up in long days and short months is just how it goes.

Anyway, Squish is doing great. I mean that, truly I do. Over the summer he went from largely non-verbal and signing to consistently using five word sentences. It blows me away and I love his little voice. His speech therapist is really impressed with his progress. Back in May, urology took K off his prophylaxis antibiotic. He was on that because there's just no way to do intermittent cathing without introducing bacteria and germs into the urinary tract. But he was doing so well, we decided to stop it. June, July, and August all had UTI's. Each one more serious than the one before it. August was a Staph infection. So, after lots of phone calls and having records and lab results faxed, we're back on antibiotics. I'm fine with that for now, but the ultimate goal is to not need them. As far as physical therapy goes, Kemper is now in a shoe insert, not a brace. He still has some balance and gait issues, doesn't run or jump, but he's on the move and he is quick.

Kemper's third birthday is fast approaching, and with that there will be much celebrating, with Mickey Mouse, as that's his jam right now, but there will be a ton of sadness too. He will be aging out of Early Intervention and moving into Exceptional Children for preschool. I am "losing" the people that have made giant differences in Kemper's life. His case worker, Jessica has been a shoulder, a support, a sounding board, and the doorway to improving Kemper's quality of life. He's had an Occupational Therapist that helped him learn to eat solid food without gagging. He's had a physical therapist who has worked with him since he was just a year old. She has developed his strength and helped him learn to walk and climb, and taught Brett and I how to work with him daily to keep developing. Speech Therapy, I can't even believe the leaps and bounds there. We started off trying to get him to consistently use the same vowel sounds, now he's saying, "I want Mickey Mouse, sausage, and fizzy juice, Mommy!" Aging out of this program brings me to tears. Not because he won't have access to therapy or I won't have a new case worker, but because I have a true love and appreciation for these people and how they have touched our lives. My son is doing all these wonderful things and I have such gratitude for these people for helping him. I'm tearing up now just thinking about this.

I've discovered that my predisposition to anxiety has a breaking point. All parents need help, no one can take on all responsibilities, put tons of pressure on themselves and succeed forever, and I found that out over the summer too. When cracks start to show, it's time to re-evaluate and take some things off your plate. For me to be the best Mom I can be, and a healthy person, I needed to change my ideas of what I had to be as a special needs parent, a stay at home mom, and an activist. I had to rediscover who I was and what I wanted to do as a person, not a parent. I had to give up some things on my schedule that hurt. Especially not participating in this year's Walk N Roll, but I needed to do it in order to be healthy.

Brett and I are enjoying every moment of being parents, some less than others, there's some whining and crying that 2 year olds do that isn't terribly endearing. However, a pudgy little hand wrapped around your neck and a sweet little voice begging for one more hug before bed will make our hearts explode. Of course we have our schedules, Brett's job is demanding but he spends as much time as he can with our family. We have multiple therapies, doctor's appointments, and typical household demands every week that make us tired just thinking about them. But we are learning to break things down into do-able chunks so that we can really enjoy our time together and our time to ourselves. Of course with Halloween this month, being that it's truly the most wonderful time of the year, our calendar is even more jam packed, and we are insanely happy about it.

Learning to shrug off the invisible weight of everything that isn't done and all the things that I cannot do is going to be a lifelong lesson. I will always have to work on that, because tend to freak first and think later. Diligence is something that luckily comes with the territory of being a special needs parent, so I'm a step ahead on that.

By The Time He's Two...

The day after the ultrasound that confirmed Kemper had Spina Bifida, we went to see Dr. Culler in Chapel Hill, NC. He had previously worked with the MOMS study in which the repair surgery is done in utero instead of after birth.Our Perinatologist sent us to him for a second look and he said the words that helped me pull my broken heart and shattered dreams back together.

"By the time he's two you may never even know he had Spina Bifida."

Not a guarantee, not a certainty, but hope to cling to that my baby would have a shot at typical.  Thing is, back then I didn't know much about Spina Bifida so I wasn't sure what I was hoping for. All I knew was that what the Perinatologist had to say had been the most frightening, disheartening, terrible future for our baby.

Turns out, that's pretty normal when you're delivered the Spina Bifida diagnosis.  I believe it's a combination of CYA (cover your ass) and outdated information.  It takes a very long time for the standard of care to change and for information to be up to date for doctors that don't deal with Spina Bifida every day.
Dr. Culler gave us a better informed, more realistic set of expectations because his career included ground breaking surgery on a fetus's spinal cord.  I'm not saying that's what it takes to get informed doctors, but it feels pretty close to that sometimes.

Anyway, let's fast forward two years.  Turns out that Kemper still noticeably has Spina Bifida and that is OK. Lots of things have changed, lots of things are better than we ever hoped, and I've made some fantastic friends in the SB community.  I will say this, Kemper has very high functioning for Spina Bifida, his lesion is sacral, and he can walk.  So, I suppose on the outside if you look at him, you see a typical child. But he's got a ton of stuff going on medically and developmentally.  Again, not as much as most kids with SB, but he's still got it happening.

I continue to digress.  My point is this, if you told me two years ago that there would be a point where I could cath him in an airport bathroom with people staring and not bat an eye, I would have called you a dirty liar.  If you told me that I would get through sending him to the OR 5 times without fainting, I wouldn't have believed you. If you said, you're going to get to the SB Conference and meet all these people who've supported you in your journey, I would have said Kemper was far too fragile to travel. He flew twice this year and took countless car trips with me. He fell on his face, slammed his fingers in doors, threw tantrums, and all kinds of other stuff too.

This is our life. Kemper is our world and he is living. Yeah, he's got Spina Bifida, but in a way, that doctor was right. It's not the first thing we think of anymore. Yeah he wears braces, yeah, he's got a shunt, etc, etc.  No big. I can't believe I reached this point, so I guess it is a big deal. I want all the newly diagnosed parents out there to know that this place exists.  I'm settling in and grabbing a drink with an umbrella in it, I'll see you here in a couple of years.  Until then, if you need me, I'm there.

                                                            Happy Birthday, Kiddo. :)

My First SBA Conference 2012

This year I was fortunate enough to attend the Spina Bifida Association's 39th Conference in Indianapolis.People have been abuzz in all the SB groups on facebook, including my group, Living With Spina Bifida. It's been a personal goal of mine to meet some of the delightful people I've had the gift of meeting in the online Mom and SB community. It was exciting to count it down with friends and talk about meeting up in the lobby. There were so many sessions I wanted to attend, so much going on, so many doctors and speakers and vendors. The Cincinnati Children's Hospital Colorectal Center was presenting and had a booth. A million medical supply providers for catheters and orthodics, different wheelchair vendors, the ZipZac chair, armtrykes, standers, service dogs, latex allergy groups, and so on. Jean Driscoll spoke at the celebration luncheon and she is an amazing athlete and speaker.  My homie Erica Hoke Potter won an award for her fundraising efforts for 4 before the 4th.  They shined the spotlight on some really awe-inspiring people who are doing important things.

This trip had me pumped. Super pumped! However, it was a journey fraught with trouble.  It was cancelled flights, bodily fluids, personal injury, and Hell on my back.  I could be heard saying I was never going to leave my house again after this trip.  Kemper is still out of sorts over a week later and missing a piece of his top front tooth.  Thankfully it's a baby tooth, but still, a chipped tooth.  I'm nursing a 2nd degree burn on my hand, and some of our clothes were thrown away.  I had a big stroller, diaper bag, cath bag, carry on, a suitcase, and my car seat.  It was ridiculous. And so hot, dude.  Crazy hot.

I'd go again in a heartbeat though. The bond between the people in our community is strong, for the most part it was like getting together with old friends.  The information and networking at the conference was absolutely worth the trip. Kids Camp was fanastical, the girls running it have a sister with SB. They were great with my son, and with the clingy Mom. (It was the first time I'd been away from him like that, c'mon, that was hard!) The tips and pointers and feeling of someone really knowing what your life is like and understanding how hard and how wonderful the day to day can be is so awesome that it makes me a little emotional. My heart was usually soaring or breaking, I cried a little, and I got some really solid information and feel like I have a plan for Kemper.  That feels freaking amazing.  It's like you're bursting with renewed energy to be home from conference.  You have all this information and data and know what you need to work on, and it's rejuvenating to the spirit to have that burst of steam to do something great for Kemper. It feels good to have a plan and goals and ask panels of experts questions and get answers and suggestions that are working.

If someone asked me if conference was worth the hefty tag of attendance, hotel, and airfare, I'd say without a doubt YES. Also, it's pretty sweet to stay in a swanky hotel and go to receptions and have wine and catered breakfast and lunch for a few days with some really nifty peeps.

Next year will be a little different with mini conferences, but I still plan on going to whatever they have, and participating in the SBANCSC Walk n Rolls this coming year. This is my cause and I have renewed vigor.