Some Success with the Cone Enema

I hope that I am not speaking too soon, but we might finally be having some success with Oli's cone enema.

As I may or may not have mentioned in the past, bowel and bladder issues are common to people with spina bifida, no matter what level their lesion was. Oli is an L4/L5, which means that all sensation below the 4/5 lumbar is damaged from when his spine developed outside of his body in utero. Essentially, the nerves that control his bladder and bowel just dont' work. This can manifest differently in different people; lots of people with spina bifida cannot empty their bladder on their own, so they have to catheterize every few hours. Thank God we escaped that; we had to do if for a few day in the NICU when he was born, until his bladder "kicked in" and he started going on his own. And by we, I mean the nurses. They were training me, and it seemed highly unlikely that I was going to be able to effectively stick a tube in such a sensitive area 4-5 times a day -- I didn't have the stomach for it. He must have wisely sensed what was coming, and willed his bladder to kick in.

So, for the last few years, he has been in diapers (sometimes clothe, and sometimes regular). We give him a capful of laxative in the morning, and then a cone enema at night before bed. We have been working the cone enema on and off for about a year, and it is pretty much the bane of my existence. At first, it was a big, messy, pain in the butt. Literally. But the worst part is, it just hasn't worked. It is supposed to completely clean him out until the next night, so that he has one big bowel movement on the  potty after the enema, and then not again until we do the enema the next night. However, no matter what I try, he still has poopy diapers the next day.

I have redoubled my efforts this summer, being more consistent than ever, and leaving him on the potty for longer than before. We have streamlined the process, so that the enema part takes only a few minutes, and we read our books for the next half hour or so. It hasn't made a big difference, until this week. He had a couple of days of really loose bowels, during which I kept doing the enema, and then on maybe the third day, he didn't go at all except in the potty. The same for the fourth. On the fifth day, he had just a little poop in his diaper. We'll see what we get today.

I am hoping and praying that this the the breakthrough we have been waiting for. Once we get his bowels under control, I can put him in cloth training pants. After that, in a year or so, we can start catheterizing for social continence. And by we, I mean him. We want to wait until he can do it himself, so he can just go to the bathroom every few hours, cath, and be done. (Notice how I have neatly removed myself from the equation :)

But the bowels are the key. There is no point in controlling his urine if he is pooping without control. So I am really praying that our persistence has paid off and that we are getting things under control.


To be continued...

The End of an Experiment

I am sad to say that our days of no cable are over.

A while ago, Tim and I realized that we no longer needed cable television. We could access virtually every show we wanted either through Hulu, Netflix on demand, or via a network website. I especially hated the way that parts of our "special bundle package" would expire without my realizing, and our bill would go up $30 or so every couple of months. Of course, I could catch the increase and call afterwards, but we kept getting whammied with these increases every couple of months.Dropping cable seemed like a great way to save some money.

However, once we started to research the options, we realized that it was nearly impossible to drop cable and save money. Because of the way all major internet service providers bundle their packages, it was almost the same amount of money to have cable with internet and phone, or internet and phone alone.

We dropped our cable, and kept our internet and phone through Verizon. Let me say that we never use our home phone, but need it hooked up for our house alarm. Even dropping the phone and just keeping internet would only save us another $20 or $30/month. To my pleasant surprise, the first bill we received was $30 less than we were quoted, or only $60, due to a customer loyalty discount. Score! I was elated. Our experiment was a financial success.

Meanwhile, it was a success in terms of lifestyle, as well. Although I missed being able to watch TV in our bedroom while folding laundry, we didn't miss having cable otherwise, AT ALL. We just don't need it. We don't watch any TV in real time; we DVR all of our shows, anyway. Now that football season is coming up, we would have had some difficulty without live TV, but we would have made due.

However, I received our second bill today, and it was $113. I just don't understand. Verizon makes their bills so difficult to understand that I can't figure out why it was more, but since it is closer to what I was quoted, I know that it was "right." So I made Tim get on the phone today (since I don't have anywhere near the patience to do it), and he confirmed what we already knew -- adding cable to our services as part of a "bundle" would bring us in at exactly the same price. So why not get our money's worth and get live TV, too. Of course, this is a "special offer" that will go up in 12 months. That is exactly what I was trying to avoid.

I feel defeated, like "the man" won. We were totally fine without the cable, but why not get the most for our money? It makes me mad to think about it. However, I am glad to know that we can live without cable, and that our side of our experiment was a success.

EDEN 5K and Training for the Hershey Half Marathon

So, I might be turning into an athlete.

At the urging of my sister Beth, I have been running more and participating in 5Ks since the Turkey Trot last Thanksgiving. I now run 3-4 days of week, usually no less than 3 miles at a time. I also broke down and joined a gym other than the community rec center. Unfortunately, the rec center didn't really offer convenient hours/class times. So, after much debate and looking around, I joined the WOW gym. Although Tim had a bad experience there before we met, my sister Krys goes there, and one of our friends from Karate works there. What I liked best was a)the price, and b) the fact that I can work out at every location. Since I live almost directly between Robbinsville and East Brunswick, I have a pretty wide schedule of classes to choose from. So I have been doing a yoga/pilates mix and weight training class at the gym 2-3 times a week, plus running at home.

Then, Beth decided to up our game by getting us involved in a half marathon. Although I wasn't sure at first, she found a training plan (if you follow the link, note that it cautions you should get medical clearance if you are over 35. ouch.) that was doable, and a half marathon in a theme park. I think they even give out chocolate at the end. It doesn't get any better than that. We can't really back out now, since Mac is super excited to go to Hershey Park.

Game on.

We are in week 2 of training now. The farthest I have ever run is 4.5 miles, so I will soon be breaking new ground in distance. I am nervous about going up a mile every week, but Beth and I will be doing those runs together, so it should be okay. We are very good about rewarding ourselves with food, coffee, etc., whenever we feel overtaxed.

To kick off our training, we ran in the EDEN 5K this weekend at the Princeton Forrestal Village. It was HOT and HUMID, but we made it through in a respectable time of 30:30. However, we took our time as a challenge to do better next time, and are running two more 5Ks in the next few months.

This is all shocking to me, because until a year or so ago, the words exercise and Lisa didn't consistently go together. But now that I have started, I really want to make it through the half marathon and beyond. Not only is it good for me, but I think that it sets a great example for the kids, too. And as long as we are running, it is extra time that Beth and I get to spend together. All things considered, it is a winning situation.

Oli's COOL New Shoes

This weekend was very exciting and fun for many reasons, not the least of which was that Oli got new shoes. And not just any new shoes, but cool new shoes. Because of his braces, especially his big ones, Oli has been forced to get whatever shoes fit. We have done our best to keep him outfitted in cool shoes, including two pairs of Tony Hawk sneakers and a pair of Adidas. However, his footwear selection has been limited to extra wide sneakers.

This weekend at Journey's Kids, we hit the jackpot! Not only did we find Superhero Squad sneakers that fit, but we also found Superhero Squad Crocs that fit. We can use the Crocs for the water park or for variety, and the sneakers for everyday use. The sneakers light up, and Oli has been kicking everything to make them light. He has even been more willing to go in his walker, which, coincidentally, lost an important screw yesterday. It figures that as soon as he was willing to walk in it, he couldn't.

Luckily, we found a temporary replacement screw today, so Oli is back in business. Here are some pictures of Oli with his crocs and sneakers.

Mackensie's First Communion

When you are raised Catholic, receiving your first holy communion is both a big deal and a big event. You have to go to CCD for months, receive first penance, practice, get dressed in a white gown, and receive communion for the first time with the rest of your CCD class. That is how I did it. However, about 7 years ago, when I was pregnant with Mackensie, I was looking for a new church to go to. The one that clicked with me was Aldersgate Methodist Church, so we started going there. It didn't really matter to me that it wasn't Catholic. I figured as long as it was Christian, the point was the same. All Christian churches pray to the same God, and praising Jesus. That is good enough for me.

However, there are some differences. Methodist church is definitely more low key than Catholic church. Communion is only once a month, there is no confession, and anyone can take Communion as long as they believe. Sunday school takes place during church (during the school year, anyway), and there is no first communion ceremony. I've been thinking for a while that Mac is probably ready to receive communion. We pray every night and read the Bible almost every night. She recognizes the stories in Sunday school, and loves to go to church. It seems like a big step, but she is 6, which is the same age she would receive communion in Catholic church.

Today was the first communion Sunday since Sunday school ended a few weeks ago. Halfway through the service, when I realized this, I started to prep Mac for communion. "Remember the story of the last supper, when Jesus breaks bread with his disciples?" I asked.

"No."

As quietly as I could, I explained the story, and how communion was symbolic of  Jesus' sacrifice for us. Mac zeroed in on the fact that it was bread and juice, and therefore a chance to eat during service. She started making munching sounds and asking when we could get the bread. Reading into the way she was acting, I think that she ultimately understood, but was excited by the whole prospect.

When the time came, we went up , and Mac did a great job. She said "thank you" instead of "amen," but overall, it was a successful first communion. Although it came without the ceremony that usually accompanies a first communion, it was a big deal to me. And I hope that in her heart, it was a big deal to her, too.

Mac at church during the Easter play.