Shriner's - Day 17 (otherwise known as the "not-so-perfect" day) - cross-post

So I guess all days can't go perfectly. And neither can all nights. And I guess that was the pre-curser to the "not-so-perfect" day. Ben had a pretty good day. Me? Not so much.
Our roommate had a rough night last night. She had full leg casts removed yesterday and last night her muscles were spasming. So she was in pain. So between 11pm and 3am, she was awake and crying A LOT. Ben never even budged, but unfortunately, I didn't get much sleep.
Once morning arrived, I was counting down the minutes until I could drop Ben off in the playroom so I could take a nice shower and have some "me" time. But first, he had OT from 8:30 to 9:30. OT is not my favourite thing. Ben seems to be completely OK with it now, but I personally find it boring. And, to be honest, for some reason, I just don't care about it. I guess I figure that Ben is not going to go his whole life not knowing how to hold a pencil, draw a straight line, or make cookies with play-doh. I'm over-simplifying things, but that's pretty much how I feel.
And then add to that, some comments today about Ben's fine motor skills not being quite age appropriate and it really put me in a bad mood. I don't know why it bothers me so much. I know his GROSS motor skills are not age appropriate and it doesn't bother me at all (well...of course, I want him to walk, but I can talk honestly with his PT's about his strengths and weaknesses and not feel like it's an attack on me). But when we move on to his FINE motor skills, I guess I just feel like I've missed something.
And plus, I'm annoyed. Ben has been followed by OT for years and we go every few months to be told "he's doing fine, come back in 3 months". Eventually, we missed his OT appointment in September and I never bother rescheduling. I mean, why bother? It just seemed like such a waste of time.

Anyways...enough on that.

So...off we go at 9:30 to the playroom. Like I said, I'm all excited for some "me" time before we head to PT at 11. But oops...I forgot. The child life worker was out this morning so parents were required to stay. Crap. So much for a shower. And a 2nd cup of coffee.
So Ben and I played with some bug game and then read like-a-million dinosaur books. This boy is dinosaur obsessed! And he knows it all...and consequently, so do I. I know more than I ever thought I would about T-Rex's, triceratops, stegosaurus, ankylosaurus, and on and on and on. We've even been learning about the 3 dinosaur periods and I even know which dinosaurs lived in which period. It's crazy. Ben's volabulary is AMAZING. We had a big conversation today about why the dinosaurs are extinct. And yes, he even used the word extinct. There's actually a really cool dinosaur book that compares each dinosaur to real life things...which really helped Ben (and me) figure out how big they really are. For example, a T-Rex was as tall as a telephone pole and his teeth were as big as bananas. Cool, eh?
At 11, we were off to PT. Where I learned that Ben wouldn't have Stephanie today, but instead another PT, Gloria. Which was fine. But not as nice. And since I was already cranky, I wasn't thrilled. His session was totally fine and he worked REALLY hard. But it wasn't the same.
The afternoon went better. A child life worker was at the playroom this afternoon as was Philip, Ben's favourite volunteer. So I finally got my "me" time which I celebrated by falling asleep on Ben's bed for an hour, before rushing off for a quick shower. And then 3pm brought pool time.

Ben was TIRED tonight. Really tired. And even cranky. Which he probably caught from me. For some reaons, this boy is OBSESSED with having a bath every night here. At home, he has a bath twice a week. But here? All he wants to do is have a bath. The issue is there is only one bath tub...for about 15 kids. And the bath tub needs to be cleaned in between each kid. Needless to say, the bath tub is a pretty popular place every evening. Ben had a pretty big meltdown when I told him that he couldn't have a bath tonight. He had one last night and I just wasn't going to fight for my place in line tonight.

So now, he's in his jammies. Watching Kipper. I'm on my cot. Tired. Even with the nap from this afternoon. And a bit annoyed that our roommates seem to spend every minute each evening on the phone. WIth about a dozen different people (yes, I'm exaggerating.)

Regardless, of my "not-so-perfect" day, Ben actually had a pretty good one. Except for the bath tub meltdown. So I shouldn't complain. But I'm really hoping for a good night's sleep tonight.

Sorry, but there are no pictures tonight. I didn't manage to really get anything good today. Hopefully tomorrow will be a better picture day.

Goodnight all.

Shriner's - Day 15 - more awesomeness (cross-post)

As promised, here I am with more details on what Ben was up to on Day 15 here at Shriner's.

In the morning, he had an hour of OT (Occupational Therapy). Well. That is going SO MUCH BETTER than it was last week. Last week, he started crying before we even got in the room and REFUSED to go in until coerced. Now? He goes in happily and works hard for an hour (previously, sessions would only last about a half hour).

Here he is working on cutting, and doing a great job!

Probably the biggest deal here is that he can now sit ALOT better than he could 3 weeks ago. In the beginning, his truck control was poor and it was hard for him to sit up straight for even 10 minutes. Now he can do it for the whole hour (with a little reminding). Betty is sitting behind him, but really just to make him feel more secure. She really isn't supporting him at all.
And here he is joking with Betty!

At the end of the session, it was Whiteboard time. After missing a few sessions while Mom was here, I was thrilled to see him holding his marker so well AND writing his name HIMSELF!

At 11am, it was time for PT with Stephanie. Now that he's getting stronger, it's time to work on independent standing! How exciting! Before the operation, he had been working on it and could sometimes last up to 5 seconds before having to hold on to something. But it was so HARD when he was so high up on his toes and his knees were bent. Now, with flat feet and straight knees, he can make some real progress towards standing on his own!
Here he is standing with Stephanie behind him. She's been continually modifying a beanbag toss game as he's been progressing. In the beginning, he just had to sit on the bench and throw. Then he had to pull to stand using his canes and sit back down, before we would give him a beanbag to throw. Then he had to pull to stand with his canes, stand for a few seconds with his canes, and sit back down before we'd give him a beanbag. And now? He has to pull to stand and then LET GO and stand independently for a few seconds before we'll give him a beanbag.
You can see Stephanie's hands behind him here, and yes, sometimes she is supporting him, but there are times where he has stood on his own for up to 10 seconds! (See the video below for more standing success.)

We've also been working on knee-walking. Before the surgery, Ben could take up to 10 steps on his knees before falling forward onto his hands. Now, Stephanie has to support him, but we expect that this will improve quickly.

And I had to post this picture just because it's so cute!

Here's a video of him working on his standing for Daddy and Daniel:



At the end of each morning session of PT, Ben does his walking practice. At first it was with his walker and then he progressed very quickly to his canes. And this time? He was holding onto a skipping rope. His steps look amazing! His feet are nice and flat and most of the time he takes nice, big steps. And sometimes? His heels even hit the ground first!



Ben's pool sessions have been going great. He LOVES the pool and does everything that Stephanie asks him to do. In the pool, he works on standing with his feet flat and his knees straight. He also works on high kneeling (standing on his knees), pulling up to stand, squats, and even walking! And this week he took his first independent steps in the pool!!

Random

Since I can't seem to gather my thoughts into one subject for a post, I thought I'd just do a bullet list of things that are going on with us. Here goes:

Ben had a great morning yesterday. He had PT and OT back-to-back which is very unusual since he only sees the OT every 2 to 3 months. We hadn't had a PT session in about a month due to various illnesses and scheduling conflicts so it had been awhile since we'd been to the hospital. He did really well at PT. He practiced going from sitting (on a bench) to standing and back to sitting for awhile. We then practiced STANDING ON HIS OWN! He was able to do it for 2 to 3 seconds. It was fantastic and he loved it. We left PT to head to OT. It's quite a walk through the hospital but Ben walked the whole way in his walker. OT went really well as well. He was able to do all the tasks presented to him and blew the OT away with his knowledge of numbers and letters. She didn't even bother to give us any homework. Ben then walked all the way from OT back to the car...another long walk. He did great. When I put him in his car seat, he looked at me and said "really fun Mommy". Too cute.

We've pretty much decided it's time for us to get a mini-van. I fought it for awhile but am now really ready for it. And excited about it. We've actually got one for the weekend to try out and I'm lovin' it! It's awesome. I can take both boys out to the van, open the sliding door, help Daniel in with one hand while holding onto Ben, put Ben in his carseat and then put Daniel in his carseat. With our CR-V, I would have to tell Daniel to hold onto my leg while I put Ben in and then put Daniel in...all the while worrying that Daniel will run off. No more worrying! Plus, there's tons of space for strollers, walkers, bikes, etc.

The end of tax season is only 2 weeks away! That means that the part-time job that I don't like will soon be over. As you may recall, I took on 2 part-time jobs back in February. Doing tax returns at my husband's office and being a Weight Watchers Leader. I really enjoy working for Weight Watchers and running meetings, but I'm not enjoying the return to the accounting world. Thankfully, that is almost over and I'll have more time for the boys. Yeah!

We're very strongly considering trying out Conductive Education for Ben this summer. The closest CE centre is 2 1/2 hours away but I think we're ready for it. We're going down in late May for an assessment. And then we'll make our decision. I'm pretty sure we'll try it out sometime this summer. I'm just not sure of the timing or how much we'll do yet, but I'll be sure to update you as we move along in this process. If you want to read more about Conductive Education, check out this post by Renee at Massagermommy.

Happy Saturday everyone!

My boys love their sunglasses. Here they are "preparing" for bed.

All about Ben

I wasn't sure what I wanted to write about tonight. But I think it's time to tell you more about Ben's diagnosis. Ben has Spastic Diplegia Cerebral Palsy. He was diagnosed by a Pediatric Neurologist in September 2008...just a week after his first birthday. We really had no idea. We knew he had developmental delays but we really had no idea that it was any more than that. So, let me try to explain what this diagnosis means.

Cerebral Palsy ("CP") in the most basic terms means that there has been an injury to the brain (cerebral) that has caused the person to not be able to use their muscles in the normal way (palsy). CP is not progressive. It is not communicable. It is not curable. It is (somewhat) treatable.

There are 3 main types of CP:

1. Spastic

2. Athetoid

3. Ataxic

A person can also have a mix of these 3 types.

Spastic CP is the most common type (about 80% of CP cases are spastic). It basically means that the person has one or more tight muscles groups that limit their movements.

Diplegia is a type of CP that affects mostly the legs, but can affect the trunk and arms to a lesser extent.

Ben's case is on the milder side of the spectrum. There is a classification system that classifies children affected by CP based on their gross motor skills (sitting, walking, and wheeled-mobility). You can see it here. Currently, both of Ben's PTs consider Ben to be a Level 2. This would indicate that Ben will someday be able to walk indoors unaided and walk outdoors with the use of a walker. This however is some time away but hopefully before he starts school.

Some more specifics about Ben:

1. We're not sure if the CP has affected his speech. He is somewhat delayed but not enough to cause any real concern at this point. He babbles constantly and can say some words (about 4) in the right context.
2. We don't think that the CP has affected his cognitive abilities. I am not sure but have heard that this will be assessed when he's around 3 years of age. Currently, his PT's think he's very bright.
3. His fine motor skills are really great at this stage. He saw an OT once a week for about 6 months. We only see her once a month now.
4. The spasticity in his legs seems to mostly affect his hamstrings and calves. His adductors are not as affected (the muscles on the inside of the thighs). Usually with Spastic Diplegia the adductors are affected which causes scissoring of the legs when walking or crawling. Ben had a bit of tightness in his adductors during a recent growth spurt but lately that tightness has lessened.

When Ben was diagnosed in September (7 months ago), he could roll from his tummy to back and back to tummy. He could roll both left and right. He was not comfortable hanging out on his tummy. He could not crawl in any form. He could not sit unassisted. He could not pull up. Just 7 months later, Ben can sit unassisted (although he still has some balance problems so we don't leave him unattended when sitting). He can army-crawl. He can get up on all fours. He can pull to a kneel. He can hang out on his knees. He loves to be on his tummy. He can use a walker with help. He can go up and down the 2 steps into our family room. HE IS AWESOME! What progress he has made! He is a very hard worker and gets such pleasure out of doing things himself! He amazes me every single day.

The boys

Well. Now that you know lots about me, it's time to tell you about my boys.

My sweet, sweet boys are now almost 19 months old. Daniel and Benjamin were born on September 19th, 2007 at just 30 weeks and 2 days gestation. I had no complications with my pregnancy until 29 weeks when I started feeling some tightness and told my ob-gyn. Anyways, it turns out I was starting to dialate. A week later, I was dialated even more (even though I was not contracting). Both boys were breech and apparently they could feel Daniel's feet. They were very worried about cord compression and it was decided that an emergency c-section was in order.

So, within the hour, they had arrived. I was terrified. They were too young...just 30 weeks. They weighed 3 lbs 4 oz and 3 lbs 7 oz. They were of course taken right to the NICU after just a few pics with me.

They stayed in the NICU for 8 weeks and 1 day and came home together on November 15th, 2007. They both had rough hospital stays, but Ben definitely had the harder time. 24 hours after birth he was put on a ventilator. He was on it for 4 days. He spent the next 4 weeks going between CPAP and nasal canula. He got an infection. He required many blood transfusions. But finally, he got stronger and did better and got to come home.

Daniel fared better but still had a long haul. Although he never had anything really serious happen, he just took a long time to get over his A's & B's and take all his feeds on his own. Maybe he was just waiting for his brother to be ready to go home too.

When they came home healthy, I really thought we were in the clear. The only worry I had related to their "preemieness" was RSV. They only left the house to go to the pediatrician. We were living in NY then and didn't have any family or friends nearby. This turned out to be a blessing since no one came to visit and therefore didn't bring their germs with them. The boys didn't get sick the whole winter.

By March, I knew that Ben was developmentally delayed. But there was nothing I could do about it yet. We were moving home in May and I already knew that it took upwards of 6 weeks to get a PT to start seeing him.

Ben finally saw a PT in July. She came to the house and agreed that he was very delayed. At that point he was 9 months old (7 months corrected). Her assessment put him at about a 3 month level developmentally. Unfortunately she was going on holiday for 6 weeks and was only able to give us some tips on what to do. In August, Ben finally got in to see the PT at our local hospital on a weekly basis.

At this point, I still didn't have any idea that Ben had CP. Well, I should say my head had no idea. My gut knew something was up. All last summer, I was a wreck. I would say that I was depressed. I was overwhelmed. All I wanted to do was sleep.

The week after their 1st birthday, we went to a children's hospital a few hours away for the boys to have EEG's. Daniel had had a "shaky episode" and their pediatrician wanted both boys to have EEG's to rule out epilepsy. After their EEG's, we met with the neurologist. He told us that Daniel was fine and was likely having "shudder attacks". These are common in young children and usually go away within the first 2 years. Then he talked to us about Ben. He told us that Ben has spastic diplegia cerebral palsy. He told us that he didn't know if Ben would walk, run or play sports. He told us that Ben was obviously very intelligent and that the CP didn't affect his cognitive abilities. He told us that Ben was lucky to have a twin brother and that Daniel was lucky to have Ben. We just sat there. I don't think we asked even one question.

Then we drove home. We hardly talked on the way home. I'm pretty sure I cried. The whole drive home I was just itching to get on my laptop and start googling.

It's now 6 months since "diagnosis day". Ben is making great progress. He can sit up quite well, army-crawls everywhere, and can pull up to kneel (he's close to pulling up to stand). His fine motor skills are great and his OT now sees him just once a month. Just last week, he started training for his first walker. He did absolutely amazing and walked everywhere he could. His PT was thrilled with how well he did.

I am doing OK. Most days are good. Some days are hard. Some moments are really hard. Luckily, I have Daniel too so I have to face Ben's delays everyday and I can't be naive about how delayed he is. This makes it much easier to go to playdates and see other kids doing "normal" things. But sometimes, no matter how prepared I think I am, it catches me. I see Ben laying on the floor playing (because he can't get into sitting on his own) and all the other kids walking and running around him and it just gets to me.

But Ben is so much more than his diagnosis. He loves to be chased and tickled. He's a picky eater (he likes red pepper but not apples?). He has the most gorgeous eyes and the most wonderful smile in the whole world. He loves his daddy more than anything (even more than mommy). He loves Tupperware. He doesn't really like it when Daniel kisses him. But he loves to kiss Elmo. He is so determined and so hard working that it amazes me everyday.

And Daniel. He's small but a bully. He loves to take Ben's toys. But loves to kiss him too. He prefers mommy to daddy but would probably rather just have his blankie. His favourite word is "cracker". He loves to look out the window at the cars. He'll eat just about anything as long as you're eating it too. He has the bluest eyes.

So that's it. Those are my kids. I hope you enjoyed getting to know them.