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Sunday, August 17, 2014

Success Maybe

A little over two years ago I found out about Cincinnati Children's Hospital's Colorectal Center and their Bowel Management Program. Since that day I have done tons of research, made a plethora of calls, chased nurses down at a conference, and asked a million questions of parents who have already taken their child for this program.

The past two years have been full of anticipation for this program, which touts a success rate of over 95%, which comes so highly recommended by other parents. Finally, Kemper was old enough to make the trip and do the program and I couldn't have been more excited to see a light at the end of the tunnel. This program is not advertised to the Spina Bifida population because they could not handle the sheer volume of people. I could not believe it. I felt so fortunate to have the contacts in our community that I do.

To put this in perspective, Kemper is at potty training age and having spina bifida can mean that's not really possible. While I feel like this is a very important issue to address, it's not one that people like to talk about, and Kemper deserves his privacy. So I'm trying very hard to talk about this while preserving that privacy for him.

We packed up our bags and flew out last week, met my mother in law, Melody, and checked in to our hotel. Kemper loved the people at the airports. He loved the people at the front desk. The next morning, he started making friends with everyone he met at the hospital. And what a hospital it is! It's a massive hospital with modern everything, the most friendly staff, the most smoothly running, and the best child life team I've ever encountered.

Our first day, Kemper had to do the hard stuff, blood work and the contrast dye study of his colon. There was a Child Life specialist with him the whole time, and she made this test so much easier. **Here's where I say, parents who want more info on this process, pm me on facebook, because this is where it's a more private issue.**  He also had an ultrasound of his bladder and kidneys, but that's cake, comparatively. The woman that did Kemper's blood draw was the very first person to ever get a successful needle stick on my child on the first try. From placing an IV to every single blood draw, everyone, even the teams at Duke, have needed multiple sticks. I had to make a rule, you get one shot in each arm, if you can't do it, we'll come back another day. I wanted to smuggle this woman home with me. Everyone we encountered from the valets to the ultrasound tech was just as friendly and helpful as you please. Kemper introduced himself to the entire radiology team and we all had giant smiles on our faces.

The next day we attended a seminar conducted by Dr. Pena and Dr. Reddy. Kemper got to go to a room staffed by child life while Melody and I attended. Both men made several of us parents break down into tears of relief and hope. Personally, I finally felt like someone understood the struggles faced by a child with these kinds of issues. The kind of care this hospital strives for is care for the whole child, the disciplines work together and create a plan of care for your child. They said aren't treating a colon, a set of kidneys, or a bladder, they are treating a child and that alone was enough to make a desperate parent explode into tears.

This program doesn't make the kind of money a surgery to re-route the colon or bladder into a stoma would make, takes much longer, and isn't terribly scientific. But why do surgery if you can get this program to manage the issues? Those are the words of Dr. Pena and I swear I could mouth kiss that man for saying it. After the seminar, a nurse gave us a demonstration of all our supplies and talked to us about the giant binder we'd been given. We were instructed on how to administer, avoid issues, and track progress, because you fly solo for the weekend. It gives you and your child an opportunity to try things out and get used to the process. This is no picnic for a three year old, or any small child. The whole process takes an hour, and 45 minutes of that is sitting still.

Our weekend was fairly successful, and I was so thankful Kemper had his Grammy there to help us. We were able to do some fun things to make up for the not so fun stuff.

After Kemper got a belly X-Ray on Monday, we met our nurse practitioner, Ebony Moorefield. Can I just pause here to tell you that this woman is amazing and I also wanted to smuggle her home with me. She's personable, listens without interrupting, and has a palpable compassion. She talked to us at length and we came up with a plan to tweak our program.

Each morning that followed, we repeated the X-Ray and our meeting with Ebony. Over the course of the week, I'd say we were 80% successful. We didn't leave with everything perfect, and while Kemper is doing so much better, he's still wearing a diaper for now. That's ok, though, because we will be closely in touch with Ebony and should we experience any real problems, our local pediatrician will get an X-ray and send it to her via email. I had to email Ebony while we were still in Cinci and it was less than 10 minutes before I got a response. Can you say WOW?

We saw Urology Friday morning before we flew out and discussed his kidney reflux, and I feel like CCH would not take the same "laid back" approach of Duke to wait and see how his kidney does. Dr. Reddy actually talked about how your kidneys work until they are in such bad shape they are close to failure. I don't want that to happen to Kemper.

We were able to meet and have group time with the other parents who were attending as well. We heard some horror stories and we heard some uplifting stories. Two couples brought their children from India, some didn't speak English, everyone traveled a great distance to be at CCH. There were four kids there with Spina Bifida, some with Imperforate Anus, hypermotile colons, and Cloacae. We all wanted better for our kids and we all have high hopes. Kemper and I got to spend a little time with the other SB parents and kids, I'm so happy we did, they are wonderful families.

So basically, I'm ready to give up my life near the ocean and move to Ohio just to have constant access to this facility and all the wonderful people that make it so great. I've never felt so reassured by the care Kemper has received, I don't say that lightly either, because our team at Duke has been fantastic. They just can't hold a candle to our experience at Cincinnati.

Monday, February 10, 2014

30 Things My Child Should Know About Me

THE LIST:
1. List 20 random facts about yourself.
2. Describe 3 legitimate fears you have and explain how they became fears (graphic version)
3. Describe your relationship with your spouse. (graphic version)
4. List 10 things you would tell your 16 year-old self, if you could.
5. What are the 5 things that make you most happy right now?
6. If you could have three wishes, what would you wish for?
7. What is your dream job, and why?
8. What are 5 passions you have?
9. List 10 people who have influenced you and describe how.
10. Describe your most embarrassing moment.
11. Describe 10 pet peeves you have.
12. Describe a typical day in your current life.
13. What’s the hardest part of growing up?
14. Describe 5 and weaknesses strengths you have.
15. Describe when you knew your spouse was the one or how I fell in love.
16. What are your 5 greatest accomplishments?
17. What is the thing you most wish you were great at?
18. What do you think your spouse loves most about you?
19. How did you feel the moment you became a parent?
20. Describe 3 significant memories from your childhood.
21. Describe your relationship with your parents.
22. Where do you see yourself in 5 years? 10 years? 15 years?
23. What’s your favorite holiday and why?
24. What’s your favorite and least favorite thing about parenthood?
25. If you could have dinner with anyone in history, who would it be and what would you eat?
26. What popular notion do you think the world has most wrong?
27. What is your favorite part of your body and why?
28. What’s your favorite quality in your spouse?
29. What are your hopes and dreams for your prosperity?
30. List 10 things you would hope to be remembered for.

weatheranchormamma is where I found this project. Over the next month or so, I hope to complete this project to get me back into blogging. It's something I need for me. So bear with me and the next post will be number 1 on the list!

Thursday, October 3, 2013

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.

Thursday, December 13, 2012

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. :)

Saturday, July 7, 2012

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.




Thursday, March 29, 2012

Brace Yourselves

Kemper got the DAFO's, I talked about that in my last post.  I was nervous about them and not looking forward to it, I tried to look on the super bright side, but I have a way with the opposite occasionally.

I took him to the orthotist's office and a giant man who looked like a cross between Mr. Clean and one of those old time-y muscle men with a mustache came in and fit him. He said they fit great, his shoes were fine, and he sent me on my way.

Well, there was the whole insurance/ CDSA/ pay out of pocket thing, which got straightened out, but there was a thing.  I'm still waiting on a refund check. Lesson to myself, always call before something new to find out if it's covered. But I digress.

He came home in them, didn't care for them, I worried and fretted. Kelly, Squish's PT came out and got him to do stuff he hadn't done before.  He works for a solid hour with her on standing, cruising, stepping, balance, etc. After that, we put him in the braces for an hour a day.  Now we're up to 3 hours a day.

He is pretty close to independent steps.  He's taken quick stumbling steps on his own, and he walks to the mailbox and back holding my hand.  He will walk all over the house holding a hand to give our dog treats. He'll cruise between furniture for books and toys and cheerios.  It's been pretty awesome to watch.  He's making mighty strides in his strength and stamina.  He can even stand up alone until he realizes he's not holding on to anything.

He's pretty much teaching me at every turn that my worrying is nothing compared to his resiliency and determination. He's like sunshine chasing my gloomy clouds of doubt away, even when he doesn't succeed at something, he tries again with a smile on his face.

I gotta tell ya, this Mommy thing is pretty cool. For your enjoyment, I've included a picture of Squish rocking his braces.  He's pretty adorable.


So until next time, I wish for you to find a little bit of sunshine to wash your worries away.

Saturday, March 3, 2012

Surprises.

I've never been fond of surprises. Surprise parties invite me to be as awkward as possible and most likely un-showered. Surprise gifts make me almost as awkward. I give my husband a list for holidays and my birthday. He doesn't care for that part of my personality because he likes to surprise me. I hate I ruin it for him by continually asking if he stuck to the list. Most of the time I end up with presents early because of the questions. I plan our getaways, day trips, doctor appointments, all that stuff... it gives me the illusion of control and surprises knock me off my game. If we do something spontaneous, it was absolutely my husband's idea.

That brings me to surprise DAFO's. That stands for Dynamic Ankle Foot Orthosis. When Kemper was in the womb we were told many times that he would be a walker.  I believed it because he kicked me like he was rave dancing in my womb from the first time I felt him move until he was delivered. He wiggled and pushed and strained and ended up in a downward dog on his face in his isolette. He popped stitches because he moved so much. He crawls, he pulls up and cruises. Everyone talks about how he's going to walk and need little to no help. That was until he went to the Orthotics guy. Then the PT and this guy I just met decided he needed DAFO's.

That's a brace that goes up his shin, with straps. That was a surprise. And I didn't like it. The PT tells me, "It's temporary, when he's got this we'll cut them down to AFO's and then he'll move to a shoe insert." When you ask a PT why all of a sudden it went from shoe inserts to big honking plastic braces, it's best not to mention you fear punching people in the face for staring. That tends to confuse and frighten people who don't get me. Would I punch someone in the face really? I'm not ruling it out, but 99% of the time, I bet I could manage not doing that.

See I'm sidetracked. It's not even really staring that bugs me here. Some of it is the shock of the sudden change, which has been explained to me, but I'm still not a big fan. Then there's the whole make him wear them, look out for redness, blisters, and pressure sores. What if he hates them?

I had a cat a long time ago that I thought I could put on a leash.  I also thought I could train him to use the toilet, but that's a story for another time. Well, I would put this harness and leash on the cat and suddenly, he was rigor mortis like those fainting goats.  Would. Not. Move. He would have made a convincing stuffed animal in that situation were it not for the flattened ears and look of contempt in his eyes.

Is this what it's going to be like with poor Squish? I strap him in braces and he won't move? Or he goes tomato face and wails. Doing what you know is best for your child is tough enough, then add the fact it's not something I'm too thrilled about on top of the possibility that he may hate them and you have a pretty stressed out Mamma Bear.

They aren't even in yet, though, only ordered. So here's hoping I strap him in and he thinks they're the coolest. That would work. I've even tried to daydream to a Forrest Gump type scenario, we strap them on and he takes off. I'm aware that's a day dream. I'm fully expecting good and bad days. For the moment, I'm coming to terms with him needing braces. It's the only thing about him that would broadcast to the general public that he has Spina Bifida and that is the part that I think will be hard for me.

There will indeed be an update in the near future about how the braces are doing for him, how he handles them and if I punched anyone in the face I'll be sure to include the police report.