Happy Birthday Oliver!

 I have been deeply blessed with two wonderful children, 

one of whom turns four today. It seems unbelievable, but my little Oliver
is now a big four year old!


How has he grown and changed? In countless ways. I can still remember so vividly the fear and excitement we had the night before his birth, and the immense relief I had when I was finally able to see him for the first time.

The joy of unexpectedly being able to bring him home after 10 days in the NICU.

His sweet and intimate infant days. All of his therapy and growing through Early Intervention.

The first time he crawled (backwards) and the first time he crawled (forward) -- Both of them events we weren't sure we would ever see. His first steps on the parallel bars that he used for balance, his first steps in his walker.

His first (delayed) words from Goodnight Moon. And all of the other amazing milestones inbetween.

Today, I have a full-out little boy. He talks nonstop, loves the dirt, and loves his superheros. He loves to play with his sister, but can also have a fun time alone playing with his "guys." He is going into his second year of Pre-K, is starting to be able to count, and has friends and playdates. He can tell you his name starts with O. He can walk, but often refuses to. He is strong, but he is still cute and snuggly.

This guy is the whole package.

Happy Birthday, Little O. I love you always! I believe in you and know that you will do great things. May the Lord bless you and keep you. May He give you a wonderful life full of happiness and love!

Walker or Wheelchair

Due to Oli's impending 4th birthday, and increasing size, a debate has been brewing in my head. When he was little, his SB differences didn't really stand out. Can't walk? Neither can other babies. Crawl a lot? So do other toddlers. Not potty trained? Neither is anyone else your age.

Now we are past all that. We are hitting a point where his differences do stand out. And differences are okay, but I am realizing that maybe we have been to complacent, and Oli isn't really equipped to enter the pre-school years and beyond.

Oli has always been a reluctant walker. He hates his HKAFOs, and as a result, doesn't like to walk. I do agree with him that the HKAFOs are clunky and unrealistic; it is hard for him to play, b/c he is locked into standing position. They are too hard to lock/unlock himself. as a result, we let him crawl around the house. I recently realized that while he walks the hallways at school, they have been letting him crawl in the classroom.

The last round of serial casting made it worse -- b/c he was out of his braces for so long, getting him back into them and walking has been a struggle. And, they may want to cast again in the near future. We have an appoitnment set up for next week to discuss this with ortho, but Tim and I basically agree that we don't want any more casting. It is disruptive to him, expensive, makes Tim miss work. We would put up with that, but it also DOESN'T WORK!

Now that he is 4, the crawling isn't really okay to me. And he is getting to heavy for me to carry. So, at what point do we find a more permanent solution? Will he be crawling around the house at 5, 6, 7, 10, 15? I can't imagine he would be. When we went to a SB walk when he was a baby, we met a teenager whose primary means of getting around the house was crawling. I was appalled. But now we are on that path. So what do we do?

I am starting to think about a wheelchair, but am really hesitant b/c:

-- I know he can walk, but he just resists (strongly) when I try to get him to walk. he walks ok for his pt, and around the school.

-- I'm afraid if we put him in a wheelchair, he will never walk again.our clinic has indicated that walking is a skill that should be developed between 2 and 5, and if we miss that window, it will be very hard to pick up later. and if we start using a chair, the ease it provides will make both us and him reluctant to engage in any walking. 

I guess the crux of my problem is that we want him to walk to achieve maximum independence and fitness, but he is hardly ever doing it. So he is less independent than if we had a wheelchair. however, i don't want to "give up" and get a wheelchair, b/c i would feel like we are failing him since he can, technically, walk. 


I don't want him to look back as an adult and say "Mom, you were the parent. Why didn't you just make me walk?" Granted, he screams and cries and just stands there when I put on his big braces. He passed up a trip to the library the other day b/c I told him he had to walk if he wanted to come.


Tim and I have talked about it, and we are going to try to just get him in the braces 1-2 hours a day, and see if we can increase it from there. But we have said this before, to no avail. I can sense Tim's hesitancy, b/c everything takes longer and is much harder with the braces. They are not realistic for the house, or even for many trips out of the house. But it all circles back to the question of: What else can we do? He cannot crawl/be carried everywhere.

We were at PP beach a few weeks ago, and saw a little girl zooming down the boardwalk in her wheelchair. It haunts me b/c I want Oli to have that level of independence, but I want him to do it walking. Why do they seem to be mutually exclusive? 

Update in Haiku

Lots of poop today.

We're back to the drawing board.

Dumb cone enema.

Another Experiment Ended and Update on an Ongoing Experiment

Back in January, I decided I couldn't use my iPhone anymore. My fingers could not handle the touch screen; I was simply too old school to go without a keyboard. So I went back to the Blackberry. This time it was a Blackberry Torch, with a keyboard and touchscreen. However, I soon realized that I couldn't ditch my iPhone. I still carried it around (without service -- only using wifi) as an iPod for my iTunes library, and all the cool apps. I needed it everytime I ran to track my distance and listen to my podcasts (blackberry podcasts don't compare). Then Tim lost his iPhone in June, so I let him use my old one until it was time for his phone renewal. At that point, I realized how much I still used my iPhone, and how silly it was to carry around a Blackberry for phone and e-mail, and an iPhone for everything else. So I bugged Tim relentlessly, and as soon as his phone was eligible for an upgrade, he got a new 3Gs. Wish we could have gotten the iPhone 4, but it wasn't in the cards for this upgrade.

He realized that my old iPhone had more memory, so we switched back (I don't have nearly as much music on mine), so I essentially got a new iPhone this week! Yes, it has less space than my old one, but I didn't use the space anyway. This one is shiny and new, and despite my best efforts, I love shiny and new things!!!

So, in sum, I <3 my iPhone. While my Blackberry switch might count as another failed technological experiment, my renewed love for my iPhone makes it a success.

PLUS...

Very little poop in the diaper yesterday.  I was expecting some, b/c we didn't get much with the enema Sunday night. But using a few tweaks from this video, I added soap and warmer water to the the enema, and insisted that Oli let me massage his belly a little (he does not like it!). I was rewarded with what seemed like a successful trip to the potty (if you know what I mean), and no poop in the diaper this morning. We'll see what we get today. I have them tracking it at school, too. Lucky them. Fingers crossed for another successful day.

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...