Bad blogger

Yep. I've been a very bad blogger. Looks like my last post was on June the 7th. That's horrible. We've been very busy and now that Spring/Summer is here, my evenings have gotten so full, that I've had a hard time finding time to blog. To get you caught up on all things going on with us, here's a list:

1. We're still looking into a Rhizotomy for Ben. Really looking into it. Referrals have been sent to 2 separate hospitals for more opinions. So we wait. While we wait, I research and read blogs. I've been totally addicted to this blog as Hannah just had her rhizotomy a little over a week ago.

2. Ben continues to struggle with very high muscle tone in his hamstrings and gastrox. We had botox for the hamstrings 4 weeks ago and had our 4-week post-botox appointment today with his physiatrist. The hamstrings have definitely loosened up but the gastrox are worse. For him, this makes walking with his walker very difficult so he hasn't been walking much lately. The physiatrist is still thrilled with all the progress he's making like: walking with canes, crawling up and down stairs, getting in and out of bed, and being totally potty-trained (more on this later). I think she's even more convinced that a rhizotomy is the way to go for Ben.

3. So...since his gastrox are so tight, he's in casts for the week. They wanted to do a number of weeks of casts, but I just won't do it. It's summer. And in New Brunswick, Canada summer is only about 8 weeks long (if we're lucky). So he's only getting one set. I'm struggling a bit with this decision, but I just cannot cast that boy for half the summer. Summer is the only real time that we actually play outside. Ben LOVES the beach, the pool and the sandbox...three things that don't mix with casts. So we'll hold off on more interventions until September.

4. Yep, like I said. Ben's potty-trained. I really can't believe it. Daniel potty-trained quite easily last fall but Ben was another story. And with our CP-kids we never know what is personality and what is CP. The truth is, he was never dry so we pretty much knew he was nowhere near ready...until about March. He started having dry diapers and our nanny forced the issue (meaning HUGE bribery and rewards) and now he's totally potty-trained. Of course, being potty-trained is not really any easier for us...since he needs so much help, but that's getting better everyday. He can actually walk into the bathroom with his walker, walk up to the toilet, get help from us to pull his pants and underwear down, and then stand up to pee....ahhh, the benefits of having a penis. Really, I'm still pretty amazed about all this.

5. I finally got away with Daniel for the night. For months, I've been meaning to do this. I am always going off somewhere with Ben and even though it's always for appointments, of course, Daniel doesn't realize this. So I've been wanting to get away with Daniel on our own for some time now. On Monday, I finally did. Off we went to Halifax to stay with friends for the night (who also have 2 little boys). He had so much fun and so did I. I feel somewhat guilty saying it, but hanging out with just one kid (who can walk) is just so easy. And enjoyable. We went to the playground...and I GOT TO JUST SIT ON THE BENCH AND WATCH! What a nice change! Now...I just need to figure out how to do this more often.

6. And now for the big surprise (well, it was for me anyways)...BOTH Ben AND Daniel need glasses. We saw their opthamoligist this week for our annual follow-up (due to their prematurity). We've seen her every year and there has never been an issue...so I really thought there wouldn't be this time either. Well, it turns out that Daniel is quite far-sighted and REALLY needs glasses. And Ben has astigmatism (not a shocker - since I have pretty bad astigmatism myself). So off we went to pick out glasses. Honestly, they were adorable, but I'm not looking forward to them arriving. I'm really not. I was pretty OK with Daniel getting glasses, but when she told me that Ben needed them too, it really got to me. Just one more thing for him to deal with. Ah well...the good news is that their eyes (i.e. retinas) are nice and healthy and that of course is the most important thing.

I think that should just about bring you up to date. Sorry, I've been such a bad blogger!

Hope

I've blogged alot about acceptance. But I've blogged very little about hope.

I have accepted that Ben has CP. I have accepted that he needs braces and a walker to get around...and that most of the time a walker is actually completely useless. So we checked out wheelchairs for those situations when a walker just won't cut it. And I wrote about why I was OK with a wheelchair.

I said things like "all I want for Ben is happiness and independence". I stopped talking (thinking and hoping) about independent walking.

Ben is almost 4 years old. He is nowhere near walking without a walker or canes or crutches. His hamstrings and calves are EXTREMELY tight. We have done botox and casting ad infinitum (it feels like) with good results (to start) that fade away way too quickly (like in 4 weeks...nowhere near the 3 months they hope for). The step before walking is independent standing...like I tell family members, "you try to stand when you are on your tippie toes and your knees are bent".

Ben's therapists used to say that they thought independent walking at home was a goal for him. That was before spasticity reared its ugly head. Check out this old video of Ben walking with his walker...he's just over 2 years old here. His gait is pretty much perfect...so I see why they used to think that.




Now? Well, he is on his toes always...with knees bent (if the botox has worn off) and his left foot turns in horribly. And he even scissors some. And really? I think his therapist (and I) had stopped thinking about independent walking.

Of course, that's what we continue to work towards. It's why I have Ben doing PT twice a week and doing 6 weeks (plus) of Conductive Education each year.

But to be honest, I had given up hope. I had accepted but I had no hope. I really thought that the most we could hope for would be some independent stepping that would be nowhere near functional. I kept saying how pleased I was that he can do transitions so well and that he should be able to be independent as an adult that would likely choose between forearm crutches and his wheelchair as preferred methods of mobility.

What I didn't realize was was that this was making me very sad. Because I had given up on something that I had really hoped for early on.

And then, Ben's physiatrist said the words "rhizotomy" and "Ben" in the same sentence. And a teeny tiny bit of hope crept into my heart. And took root. I started doing more research. And watching youtube videos like this one of kids walking post-rhizotomy. And talking to Ben's PTs. And that hope grew.

I talked to Ellen from Stumbo Family Story whose little girl Nina had a rhizotomy just 6 weeks ago and is already knee-walking. And that hope grew even more.

I realize that we haven't even spoken to a surgeon yet and of course, (functional) independent walking may not be in Ben's future. But all of the sudden, I have hope again. And that feels awesome.

A fellow blogger needs our support

Hey guys. I started reading this great blog recently...it's written by an about-to-be-dad-of-triplets...all boys. I've been enjoying and following along with the pregnancy...from the dad's perspective.

Well, today he posted this post. It seems that Baby A's water broke yesterday at just 21 weeks. They need lots of support, good thoughts and prayers (if you're the praying kind). I've been following along on twitter and it doesn't sound like things are going very well...just 30% chance of survival of all 3 boys...and as we all know, very high chances of disabilities with survival.

Video - ONE CANE!!!!!

Here's a video of Ben "somewhat" walking with one cane. I am still in shock that he is at all ready to do this! He's a bit cranky in this video, but this video WAS taken at the end of a 2-hour Conductive Education session so that's to be expected.

I have to say that I LOVE Conductive Education. They just push him so hard. I never think he's ready to move to the next step, but they just keep on pushing. And he just keeps on working and progressing.

Yesterday, I cried. Twice.

I had one of those days yesterday. For the most part, I am a very upbeat and positive person. Most of the time, I can be OK with this whole CP-thing. Most of the time, I can see all the positives. All the things he CAN do. And not focus on what he CAN'T do.

But sometimes, I fail at at that. Like yesterday. I gave in to all the negatives. All the CAN'TS. And I cried. Once for just a few seconds until I could get myself under control. And once last night, for a very long time. Last night I cried huge, wrenching sobs. Tears streamed down my face. My eyes got all red and puffy. And I yelled and screamed about how much I hate what CP has done to Ben. To us.

I said things and thought things that I haven't said or thought in a very long time. Why did this happen to Ben? It's so unfair. I just want him to be able to play on a playground on his own. Why does this have to be so hard? Why can't I have twin boys that run, jump and climb together? I fucking hate what CP has done to our family. I am so sick of my whole life revolving around spasticity. And on, and on, and on.

It was awful. A really horrible night.

But today is a new day. And I am back to being me. The happy, positive me. And of course, I can never feel that horrible when I'm watching my Ben play. He's an amazing boy who is making fantastic progress.

One cane

We're back in Halifax for another week of Conductive Education with Ben's lovely classmate, "Sarah".

Well...as I posted a while back, Ben can now walk on his own with 2 quad canes. He's not super at it, but can do it without any help...and can even get down on his own.

This session of Conductive Ed is different that what we've previously done as the Conductive Educator has an assistant now. So instead of us moms staying and helping out with the session, we actually left Ben and Sarah there for their 2 hour "class". What a nice break!

We arrived back with about 10 minutes left in the class...and I just couldn't believe my eyes...BEN WAS WALKING WITH ONLY ONE CANE!!!! Yes, he was slow. And yes, he needed lots of help...but he WAS doing it.

So...I just need to remember my camera tomorrow and hopefully I'll catch it on video for you all to see.

SDR in our future?

Ben had his 3-month botox follow-up with his physiatrist today. We've done botox twice now (mainly in his hamstrings). Botox has pretty much immediate effect for him, but unfortunately in tthe 2 times we've done it, the effects have only lasted about 4-6 weeks...nowhere near the 90 days we'd like to see.

So...Ben was nice and tight again today when she saw him. I, of course, was not surprised as we've been dealing with his tightness since about early April.

I WAS surprised by the discussion we ended up having. You see, Ben's physiatrist is extremely conservative. We've known this since the get-go and had planned to see some other experts early in 2012 to get additional opinions on what the best course of action would be for Ben. Basically, there are 2 options: continue rounds of botox followed by serial casting in an effort to delay any surgery for as long as possible OR do some sort of surgery now (like a selective dorsal rhizotomy) due to his extreme tightness.

Well...today, she actually stated that Ben is an excellent candidate for an SDR. She is going to refer him to another team at a children's hospital to see what their opinion is, but she's really thinking that an SDR would be a great option for Ben.

I couldn't believe it. I think my husband and I are a bit on the aggressive-side and to hear these words from a CONSERVATIVE doctor pretty much convinced me that an SDR is in Ben's future....likely in January 2012.

I am scared-to-death and excited-beyond-measure all at the same time tonight. I feel like we've just been spinning our wheels for the last year and now I feel like maybe there's a light at the end our tunnel.

Let the research begin!

(For information on Selective Dorsal Rhizotomies, check out this page from Gillette Children's Hospital.)