Sunday, December 26, 2010
Wednesday, December 15, 2010
Since we got back from our week in Halifax doing Conductive Education, we've been busy getting ready for Christmas, going to preschool, PT appointments, etc. There is more botox in Ben's future...we're currently on the waiting list so hopefully we'll get that done sometime in January.
We're going to do another week of Conductive Ed during the 1st week of January. Again, it will be with Sarah, Ben's classmate from the last session.
We're also going to be heading to Ontario for a weekend in January for my husband's grandmother's 90th birthday party. We decided that the best gift we could give her would be to make the trip with the boys for her big party.
I feel like Ben is making good progress these days. He uses his walker constantly. Even inside the house now. We even borrowed a lighter weight walker from the hospital to use over the holidays as Ben's "inside walker" so we can take it with us when we visit family and friends over the holidays. He is getting better and better using it. He "runs" and "jumps" and even falls backwards on purpose just for fun.
We're working on giving up the afternoon nap. We're trying a 3-day-a-week nap schedule. So it's been interesting around here. Lots of crankiness at suppertime on those days when they don't nap. But they are going down at nighttime so much better and sleeping later in the morning which is great.
Christmas will be a busy and fun time for us. My sister will be home from Calgary for about 9 days which will be wonderful. The boys seem to think that she's always on an airplane when she's not here with us and they're getting excited to see her. There will be lots of family events to attend. A huge one on Christmas Eve and smaller ones on Christmas Day. We'll go and stay a night with my brother's family. And we've decided to host a "New Year's Day Recovery Party" this year. Hopefully it's a success and will be the first one of many.
Christmas feels very magical this year. The boys understand it and love all the decorations and lights. It's amazing seeing Christmas through their eyes.
I probably won't post much over the holidays but you never know. In case I don't post again before Christmas, Merry Christmas everyone! Enjoy your families. Enjoy your kids...they'll only be this age once and experience Christmas this way once.
Friday, November 26, 2010
I just had to do a post so I could show you this picture of Ben and "Sarah"! This is from this morning's Conductive Education session. They are practicing independent standing and ended up holding hands. How cute is that?
Tuesday, November 23, 2010
Lately, I've been feeling like Ben's been making ZERO progress....I feel like all we're doing is trying to manage his spasticity for the last 6 months and that he's made absolutely NO GAINS in the gross motor skills area. I have been so discouraged. I thought by now that we'd be seeing progress in independent standing and maybe even and independent step or two. But nope. Nada.
Until we went back for another week of Conductive Education in Halifax with the March of Dimes Canada.
Until he went right for the new set of canes they had ready for him and started walking around the gym (with a little bit of help of course).
I couldn't believe it. His core strength has definitely improved since we were here 4 months ago. And he's definitely gotten over the fear of falling.
I was beyond thrilled.
And you know what else? He even has a classmate this time. Let's call her "Sarah". She's 4 and has the exact same diagnosis as Ben...Spastic Diplegia CP.
Tuesday, November 16, 2010
Are they just asking to be nice? Or do they really want to know? I can never figure that out. I pretty much just say "Oh...he's doing great". And leave it at that. Maybe show off a recent picture or two.
Do they really want to know all the details of having a kid with CP?
I mean I could tell them that he's made virtually no progress in 6 months due to the vicious struggle we're having with his spasticity at the moment. We're in a constant round of botox and casting just to keep up with the status quo. We're supposed to be working on independent standing and maybe even an independent step or 2, but we're just stuck trying to keep him from getting so tight he can't even walk in his walker.
I could tell them that every morning Ben asks me "where are we going today Mommy?" because he knows that we're very likely going off to some appointment with some doctor or PT or OT.
Or do I tell them that I get this feeling that we're about to be referred to an orthopedic surgeon and that surgery scares me to death?
I don't know about you guys, but sometimes I wish there was a "special needs" handbook to help me navigate through this life I've found myself in.
Monday, November 15, 2010
Yep, 3 years ago today, we finally got to bring our boys home after 57 very long days in the NICU.
I've been reflecting all weekend about that time. It was a Thursday. And all week we'd been preparing to bring DANIEL home. Just Daniel. And then all of a sudden, Ben was pronounced "ready to go home" and we got to bring them home together.
We had training on how to use their pulse oximeters and oxygen. We filled prescriptions...many prescriptions and were given very explicit instructions on how to administer them. But you know what? We weren't one bit nervous. We'd been caring for these boys for 57 days...8 weeks and 1 day and we were READY. Ready to be a family.
Friday, October 22, 2010
Saturday, October 2, 2010
Well, I decided that I'm going to get Janet to do a few more paintings of the boys for Christmas gifts. This one is from a photo I took of them this summer when we went to Ontario to visit my husband's parents. This beach is just minutes from their house. And this painting will be their gift.
Thursday, September 30, 2010
I want to find the time to get my photo done with my sign and submit it, but I don't know if I'll have time (I'm actually in an airport right now on my way to Toronto for 5 days...and then I'm only home for a week before I leave again, but this time for 17 days).
I laid in bed the other night thinking about what I would tell myself the day before Ben was diagnosed with CP. I tossed a very ideas around and then came up with this one:
And this one has stuck in my head all week.
I remembered back to when I was pregnant and knew I was having 2 boys. I remember dreaming of them rough-housing, playing sports together. Hanging out with their dad in the backyard...throwing the football around.
I didn't have a lot of dreams for them. But when I thought of a life with twin boys...this is what I thought of.
And then. D-day. Exactly one week after their 1st birthday, a pediatric neuroligist says to me "you know he has CP right?" And those dreams? Those simple dreams went poof. Up in smoke.
I know that dream might seem silly to some. Who cares if your kid can play sports? Lots of kids don't play sports and they're OK.
And yep, they're somewhat right. But it was MY dream. MY dream of a life with my sons.
So yeah...those dreams died. And I mourned them. For a long time.
And then eventually, I started dreaming new dreams. Even better dreams.
Dreams of Ben playing wheelchair basketball - you should see his hook shot!
Dreams of Ben skiing (yeah, with adaptive equipment) and being even faster than Daniel for once.
Dreams of Ben going off to college.
Dreams of Daniel being an awesome brother and a better human being for having had Ben as his brother.
Dreams of our family just being a family that loves, laughs and cries together.
What are your dreams for your family?
Tuesday, September 21, 2010
Monday, September 13, 2010
They are getting so grown up. Preschool starts this week. Unfortunately Ben won't be able to go on the first day since he has a casting appointment. So Daniel will go all by himself on Wednesday and then they'll both go on Friday.
They tried on their new backpacks and indoor sneakers this afternoon. Neither would take their new sneakers off and Daniel wore his backpack right up til bedtime. Pretty cute stuff.
To celebrate their 3rd birthday, we had pictures done on Sunday and my parent's place. Click here to see a sneak peek. I think they turned out great and can't wait to see the rest. And my favourite...well...the one of Ben on the swing. It makes my heart sing to see him this happy.
Sunday, September 12, 2010
Standing / walking with the casts went pretty well too. Here he is standing at his train table in his bare belly (he LOVES having a bare belly):
Wednesday, September 1, 2010
It took about an hour for the PT to do both casts. And he was happy to watch Dora while she worked away. It actually worked out well, because he now has red boots "just like Boots".
These are fibreglass casts. So they'll stay on until Monday and then we'll take them off ourselves. He'll have Monday night, all day Tuesday, and Tuesday night cast-free and then he'll get his next set on Wednesday. We're hoping that he won't lose too much muscle strength by having that time off in between casts. He'll probably have 3 weeks of casting.
The PT said that the most benefit occurs in the first 24 to 48 hours. So if he's complaining and we can't get him to stop, then we should take them off. So far though, he really likes them and there hasn't been any complaining at all.
He's not allowed to walk or stand on them today, but can starting tomorrow. He should be able to walk with his walker even with them on. I'm really hoping that's the case.
So really...today was no big deal. No shots, no anesthetic, no crying. Easy-peasy. Now we just look forward to RESULTS!
Monday, August 30, 2010
1. I *think* that I may have found a preschool for BOTH Ben and Daniel...that may even take Ben WITHOUT an aide. I've been looking around for a preschool for the boys...nothing fancy...I just think it's time for them to have more time with other kids and more time away from Mommy. I've been calling around and getting pretty much nowhere. Plus, I was expecting to not only pay for preschool but to have to pay for an aide for Ben too. Well. Today I finally remembered the boys' old kindermusik teacher...who I thought also did preschool a few mornings each week. I called her and it turns out she does. 9am til 11am...Wednesday and Friday. And since she already knows us (and Ben), she figures she can handle Ben without an aide (which I know she can). Cool. We're going to check it out next week so I can see how it all works and she can see Ben again and make sure she's OK with it.
2. Ben's going back to Conductive Ed in November! I'm quite thrilled about this. And the main reason why I'm so thrilled is that he's going to have a classmate! A little girl with spastic diplegia CP who is just a year older than Ben is going to be in his class. This is EXACTLY what Ben needs. He LOVES little girls (and already has a few *girlfriends") and I'm sure she'll be a fantastic motivator.
3. Big boys beds are on their way! I finally managed to get around to shopping for the boys' beds. And found something perfect for them. They should arrive sometime in September. They are SO READY for big boy beds...it's all very exciting! And the best part? I just found some really cute bedding today in the Sears Wish Book for only $129 each (for the whole bed-in-a-bag).
4. The weather here in Atlantic Canada has been simply amazing ALL SUMMER LONG. We got back last weekend from a fabulous week of camping on Prince Edward Island. We rented a trailer at a great campground right on the beach. It was simply amazing. The boys had a great time and had so many great experiences...like campfires!
Saturday, August 14, 2010
Ben's botox appointment went very well. We were admitted into Paediatrics around noon. Ben was weighed and measured and then we played in the playroom (which was awesome). We probably waited around an hour for the Physiatrist to come.
Once she came, everything happened rather quickly. They put something on the back of each leg (over his hamstrings) to free the skin. Then they gave him an oral anesthetic which did not cause him to fall asleep, but just made him a bit dopey.
About a 1/2 hour later, they administered the botox. 2 injections in each hamstring. Basically, just like getting a vaccine. Ben did cry and we had to hold him down, but he didn't fight it too much. Five minutes later he was totally over it.
In about 10 minutes, the anesthetic started to wear off. He had a snack (the nurse wanted to make sure that he could swallow and that his gag reflex was fine before discharging him). He was very hungry (since he wasn't allowed to eat after breakfast) so he ate and ate.
Then about 3pm, we left. Ben was asleep in the van before we left the parking lot. By the time we got home, he was totally back to normal and didn't seem to remember anything about the day.
It takes between 3 to 7 days before we'll see any results. So we wait. We've also been told to do lots of "long sitting" to stretch out his hamstrings while they're looser from the botox. And of course, have lots of other "exercises" to do during the 3-month window that the botox will be effective.
I guess that's about it. I'll keep you posted on the results as I see them!
Wednesday, August 11, 2010
He is allowed to eat breakfast but nothing after that. That may be difficult but hopefully not too bad.
I'm a bit anxious about it, but excited at the same time. He needs this. He really does. I'm also anxious but excited about the serial casting for his calves in September. His walking has deteriorated alot over the last few months. He's always on his toes. Always. And he falls onto his knees quite often when using his walker. I hate that. I miss the great gait he used to have.
That said...he still loves his walker. And uses it more and more. He's even more confident using it outside on uneven ground. I can't wait til his hamstrings and calves are looser so he can do even better with it.
Wish us luck!
Sunday, August 8, 2010
Well...it didn't turn out so great for us. It wasn't a great day weather-wise, so swimming was a no-go. Since the boys are still quite young, all they do when in the pool is float around in their floaties. If it's not a warm day or a heated pool, then they basically freeze. So we decided to forego the swimming part.
The event was held at a local campground...which I thought would be great. I assumed that there would be a big flat field and that's where everything would be set up. Wrong. It was set up basically right beside a very steep hill. And there was very little room for everything. The ground was so uneven that there was no way that Ben could use his walker. There were 5 and 6 year olds running everywhere which basically overwhelmed BOTH boys. And they just clung to mommy and daddy.
I knew that Ben wouldn't be too keen on the bouncy castles and I was right. Daniel was quite interested, but once inside couldn't handle all the bigger kids.
And there was zero interest in face-painting.
So...after 15 whole minutes, we left.
On the way out, we ran into my friend who also has one twin with CP (although her boys are just over a year old)...and I just couldn't hold it together once I started to explain why we were leaving. And so of course, I had her in tears too. Poor girl.
I can't believe how hard social events can be for us sometimes. And I can't help but wonder if I'm doing a disservice to Daniel by leaving / avoiding these kind of events. It can't be good for him to have so little exposure to this kind of stuff.
I'm feeling pretty down about the whole thing now. Stupid CP.
Saturday, July 31, 2010
We just got back this afternoon from a whirlwind, 8-day trip to Ontario that included 2 flights, 4 hotel rooms, 1 rental van, countless hours in said van, too many meals in restaurants, and many, many hours spent with friends and family. I'm exhausted. And way behind. On blogging, on commenting, on voicemails and on emails.
Three good things have come about though that need to be followed up on ASAP:
1. Conductive Education in Halifax has another child enrolled with similar abilities as Ben that is interested in doing classes with us. That's exciting...just hope we can manage to coordinate our schedules!
2. Ben got his Botox appointment (for his hamstrings). It's on Aug 9th. I just hope they haven't given the appointement away because we haven't called back to confirm.
3. A good friend of mine who currently lives in Vietnam (She's South African and we originally met in 2001 when we both lived in Bermuda) is actually just a 2 1/2 hour drive away! I so hope we can manage to meet up while she's so close.
It's a long weekend here in Canada...so we have two whole days left to recover.
And to my bloggy friends. I AM reading your blogs...as much as I can anyways. Sorry for the lack of commenting, but I will be leaving comments shortly!
Wednesday, July 21, 2010
Tuesday, July 20, 2010
It was a great appointment considering it was from 12:30 to 3pm (yep, you guessed it...naptime). Ben was awesome. Fredericton is a 90-minute drive away for us and although he didn't nap on the way up, he did rest and I think that made all the difference in the world.
We met with the PT, OT and the Physiatrist. They were all awesome and I have no doubt that Ben is in the best hands when he's there. These people know what they are doing. And they are nice too. Love them.
My goal for this appointment was to get Ben on the list for Botox injections. I wanted them for his ankles / calves...they are just way tighter than they used to be. I also wanted some advice on what we need for AFO's / braces now since the ones we have are getting too small and probably aren't sufficient for his needs anymore.
In the end, they were more concerned with his hamstrings then his ankles. Which surprised me. I need to talk with his regular PT's to understand it more. Their recommendation is botox for the hamstrings and serial casting for the ankles / calves. And then of course, new braces after the casting is done.
I'm not sure when the botox appointment will be. There is quite a wait for the OR (like January 2011) if we do it under general anesthetic...which is just way too long. So we're going to do with it with oral anesthetic in September (hopefully). Casting starts in September too.
I'm still digesting all this information. It's alot to take in at just one appointment.
Sunday, July 18, 2010
Well....I immediately sent Janet a cheque and a photo of my boys. This is the photo I sent her. They are playing with a decorative garden frog from my Mom's garden.
And Janet just emailed me a photo of the finished product! It takes a few weeks to dry so I have a little while to wait before I get to see the original but I'm thrilled with the photo!
My favourite thing about the painting? If you look closely on Ben's shirt, just where over his heart, there is a small green CP awareness ribbon. Janet puts one somewhere in each of her paintings now. How cool is that? It brought tears to my eyes when she told me about it.
Thursday, July 15, 2010
I don't have the energy for a full-blown post on CE, but suffice to say that after 4 days of sessions (between 1.5 and 2.5 hours in length), I definitely feel that Ben has made progress. I don't feel that what he's been doing in his sessions is all that much different from a physio session, but I do think the intense (i.e. longer and frequent) sessions as well as a change of scenery (i.e. new place, new person, new tasks / toys) has made some difference.
Because the Halifax CE group is pretty new and Halifax is a fairly small centre, Ben did not participate in a camp or class. Instead he had one-on-one sessions with the Conductive Educator. I think he would really benefit from a class / camp. He is really motivated by other kids and I think that would be a huge plus for him. The next closest CE Centre is in Toronto and I am considering taking him there next summer to participate in a camp. It's not that big of a deal for us, since my husband's family is in that area and we would just tack another week on to our summer visit there.
Some improvements that I "think" I see:
1. Very much improved at pulling to stand. Ben has always pulled to stand by using his arms and upper body, instead of putting one foot flat and then rising onto that foot. He now puts his foot flat almost spontaneously and only needs a little assistance / prodding to get into standing. We will certainly be working on this more at home since he is doing so well with it.
2. Learned to use his hands more to get down to the floor (or even fall). Ben does not have the reflexes that typically-developing children have. Part of this week's work focused on having him "reach his hands to the floor" when getting down.
3. Climbing up ladders! We worked on climbing up and down ladders quite a bit. I'm not sure of the all of the benefits of this, but he did great at it! (I've loaded a video of him climbing below.)
4. Not so much on his toes when walking. I don't know why this is, but all of the sudden, he's walking WAY better in his walker. He's still on his toes, but his heels come down farther and more often.
5. Improved sitting. Sitting on his bum is still a challenge for Ben. He can do it, but it takes alot of effort and he still can't get into the position on his own. The w-sits very well and that's his preferred way to sit. This week we spent a lot of time working on "long sitting" - sitting with his legs straight out in front of him. To keep him occupied while sitting this way, he would blow bubbles. He could sit like this for at least 10 minutes.
6. Walking with canes. Ben tried walking with canes for the very first time today. He was very reluctant to try it but we managed to convince him eventually. He did really great. (See video below).
I think my personal feelings on CE are that it's not all that much different from Physio. I would really like to get him into a CE camp with kids his own age. I think the real reason that it works is due to the intensity of the sessions.
For more info on CE in Canada, check out the March of Dimes.
Video 2: Climbing!
Wednesday, July 14, 2010
Sunday, July 4, 2010
Janet is a painter. You can see her work here. All monies raised from selling her paintings go towards Hailey's therapies. Isn't that cool? What an awesome grandmother!
In her most recent post, Janet posted some paintings that she did OF Hailey. I personally think they are beautiful. Janet is currently trying to raise money for Hailey's Conductive Education fund. In order to do so, she is offering to paint a 16 X 20 canvas of your child for just $100!
I've already been in touch with her to get one done of Ben and Daniel. I can't wait to see how it turns out! And don't worry, I'll be sure to let you all know once it's done.
So...basically what I'm saying...is get your butts over to Painting for Hailey and get one for yourself!
Sunday, June 27, 2010
My first step was reaching out for help on a great twin forum that I was very active in called Twinstuff. They have a specific forum for medical and special needs. So I posted a question about CP and got a response from Kelly from Drake and Lulu. I was really clueless about the blogging world and she clued me in. I started out reading her blog and found lots more via her blog list. I thought I was in heaven. Here was a whole world of parents of special needs kids. There was so much great information...and not just information, but real life stuff.
Then I started wanting support from people "in real life" so I tried to start a support group in my area for parents with kids with CP. It never went anywhere. I told Ben's PT's, OT and doctors about it, but of course due to privacy laws couldn't actually give me the names of the parents I was looking for. I posted my information everywhere but not one single person got in touch with me.
So I pretty much resigned myself to the fact that my "support group" would be you guys....fellow SN bloggers. I was OK with that...I mean let's face it, you guys are a fantastic group!
And then over the past few months I've had a few experiences that made me realize that my support group is more than just you guys.
One afternoon a few weeks ago, I spent the afternoon at my mom's (without the kids) and we had a great talk. And I realized something. She's experiencing this too. She's going through pretty much the EXACT same emotions as me. Ben is her grandson. And she's had to deal with having a SN grandson. I'm not sure why I hadn't realized that this was affecting her too. And you know what? This might even be harder for her to deal with than me...you know why? Because she has to watch ME go through it! How hard must that be?
And you know who really knows how I feel? My husband. I mean he's going through this too. He's not a great communicator but once in a while we have a great chat...and we did just that just a few nights ago. And he opened up about what he finds hard about this whole thing. And it was great. It was so nice to come together and share our feelings about being a SN parent. Sometimes I feel like he's not that affected by this...but I know different now. He struggles with this too. He's just such a great Dad to our boys that I don't always see how he's struggling.
There are a few more people that I consider part of my support group such as Ben's therapists and now a few real life friends who have recently had their child diagnosed with CP. All of these people offer different things. Some offer information while others offer support simply by being part of this same club we've found ourselves in. But they're all INVALUABLE. I need all of these people. They're the reason I'm able to keep going. Keep being Ben's mom and Ben's advocate.
So what about you guys? Who's in your support group?
Monday, June 14, 2010
I've been in somewhat of a "poor me" state of mind lately. I haven't been too down, but I've been having a tiny little pity party for the last little while. On Saturday, I remember complaining to Clarence (the hubby) about how difficult it is for us to do "normal" family things...mainly due to the fact that Ben can't walk.
On Sunday, a friend and I watched over 8-week-old twin girls for a few hours so the Dad and Grandma could get a bit of a break. Where's the Mom you ask? Well, the Mom is in intensive care at the local hospital. She went into cardiac arrest about a week after the girls were born due to some complications after her c-section. And she's only recently come out of an induced coma. And they aren't sure of the extent of her brain damage. And she's about to be transferred 2 hours away to a rehab centre, where she'll likely remain for 3 to 4 years. Yep, you read that right. 3 to 4 Years.
You should have seen this Dad and his little girls. It would just break your heart to see them. And their house was so cute. And all done up and ready for their girls' arrival. They were just a normal couple. Looking forward to starting their family and then WHAM! It's all changed. Life will never be the same again.
So yeah. The universe decided to serve me up a little dose of perspective this weekend. And ever since, I've been counting my blessings.
Wednesday, June 9, 2010
Well. Charlotte's child only received the OFFICIAL diagnosis yesterday. A few months back, she was actually only told that her child "may have CP". I think this may have been a way for the doctor to soften the blow.
Charlotte sent me an email right away to tell me the news and more details on the appointment. I was really pleased that she got in touch with my so quickly. And she asked if she could use my "Facebook note" that I used to tell the world after Ben was diagnosed. She liked how it was written and wanted to modify it in order to tell "her" world about her son.
When Ben was diagnosed, I wanted the world to know immediately. But I didn't want to tell the "diagnosis story" over and over and over. It was just too hard emotionally...both on me and on the person being told. There were only 2 people that got the news from me and not via Facebook / email / word of mouth. Those 2 people were my parents.
I'm not sure exactly why I needed everyone to know so soon. But I guess to me, it was like taking off a band-aid...better to do it quickly if a little painfully and get it over with.
I've just re-read that Diagnosis Note for the first time in 20 months. WOW. Did it ever take me back! I think back to that time and am so thankful that I'm not back there. Feeling that pain. Knowing SO LITTLE. Feeling so alone in the world. The pain is not as sharp these days. I feel like I KNOW SO MUCH. And I definitely don't feel alone in the world anymore.
So I thought I would post this Diagnosis Note that I wrote way back then. In honour of my friend, Charlotte...who is brand new to this world of Cerebral Palsy.
Hello Facebook Friends.
As you all know, Clarence and I were blessed with twin boys in September of 2007 and we just celebrated their 1st birthday last weekend. It was such a great celebration with over 50 family members and friends celebrating with us.
On Thursday, we went to the IWK Children's Hospital in Halifax so the boys could have EEG’s (a test that measures their brain waves) and meet with a neurologist. The EEG’s were ordered due to a “shaky episode” that Daniel had a few weeks back. Fortunately, Daniel’s EEG showed nothing abnormal and Dr. Camfield diagnosed as “shudder attacks” which are quite common with babies and nothing to be concerned about.
Although Ben’s EEG showed nothing abnormal either, Dr.Camfield did have some bad news for us. After reviewing Ben’s medical history and examining him, Dr. Camfield told us that Ben has Spastic Diplegia Cerebral Palsy. In very basic terms, at some point (either during pregnancy, at birth, or shortly after birth), Ben’s brain suffered a lack of oxygen or a drop in blood pressure. This resulted in some brain damage that affects his gross motor skills. His legs are very stiff as is his trunk.
We have known for some time that Ben is developmentally delayed. Even though he is a year old (or 10 months corrected if you adjust for his prematurity), he only just started rolling and cannot sit unassisted. And he cannot crawl. He has been receiving physical therapy twice a week since early August and we do feel that he is making progress.
Dr. Camfield was unable to tell us what this could really mean for Ben’s future. Although Cerebral Palsy is not a progressive condition (i.e. the brain damage will not worsen over time), it is impossible to say what effects this damage could have. He was not able to tell us if Ben will be able to walk, run or play sports. It is simply too early to tell. He did tell us that this kind of damage should not affect his intelligence. We are also grateful that this has only affects his legs and trunk. He can babble, smile and laugh just like any other one year old. He is also really great with his hands and arms.
Cerebral Palsy cannot be cured. All we can do is treat the symptoms. This means continuing with his physical therapy, beginning occupational therapy and monitoring his progress. He is being sent for an x-ray of his hips and will also get an MRI in the near future. Apparently, Ben is at risk for hip dislocation and annual x-rays will monitor this. The MRI will image his brain (this will be done under sedation) and will give us more information as to the extent of the brain damage.
Needless to say, this diagnosis has been quite a shock to us and we are rapidly trying to get as much information on this as we can. We have found this summary of his condition quite helpful: http://www.livingwithcerebralpalsy.com/spastic-cerebral.php
We apologize for not making individual phone calls to inform our closest friends of Ben’s diagnosis. But, at this point, it’s just too difficult to go through the process time after time after time. That being said, we would appreciate phone calls from any of you that would like to talk to us. We really don’t mind talking about it and would enjoy hearing from you.
Love Cary, Clarence, Daniel and Benjamin
Wednesday, June 2, 2010
Well. In the weeks since then, I have connected with these Moms.
Initially we communicated through Facebook. In order to provide support without overwhelming them, I posted many photos and videos of Ben on my Facebook page. Basically providing them a way to look and find out about Ben, without having to ask questions.
CP awareness day was during that time. I posted facts and links about CP on my Facebook page over that weekend, in an effort to not just provide support to them, but to educate all those around me (and around Ben).
And they ate this information up. They devoured it. They shared it with their husbands and their families. They posted comments and asked questions.
Then they came out to a Mom's Night Out (sponsored by our Moms of Multiples Group) and they stayed late and asked questions. And we connected. We cried and we hugged.
After that, we had playdates. And shared even more information. About local programs and service providers. And our kids played. I even loaned out a few toys that were helped Ben to sit in the early days.
It's truly been amazing. The connection between us was instant. And forever. We have a bond that is unique and special.
I am thrilled that Ben will know other kids in a similar situation. With CP. With a typically-developing twin.
I am thrilled that Daniel will know other kids in a similar situation. Typically-developing. With a twin with CP.
But I am also happy for me. I needed this. At this stage, they can't really answer any of my questions about botox or serial casting. But that's OK. That's what I have you guys (and good 'ole Google for). But they understand what it's like to be in MY shoes. They get it. And that feels good.
Thursday, May 27, 2010
Here's the link to the slideshow of our photo shoot. The password is cb050710 if you are interested in taking a look. The photos ended up being absolutely amazing...even though I thought the boys were a bit difficult and was actually a bit worried that we didn't get much of use.
The slideshow will only work for the next 7 days.
P.S. The other woman in the shots with the boys is our nanny. We like to include her when we get professional photos done since we consider her to be part of the family.
Monday, May 24, 2010
Wednesday, May 19, 2010
Everyone involved was just terrific. There were at least 10 people there making sure that all went well for each rider.
After his session, he just wanted to keep looking at Cowboy (the pony he rode) and then wanted to pet him. Check out this adorable photo of Ben and Cowboy:
Here's Ben on Cowboy with Daddy helping out:
And here's a quick video of Ben riding. He doesn't really smile but he LOVED it!
He really didn't want to leave. He just wanted to keep petting Cowboy. It was great. And we can't wait for next week.
Friday, May 14, 2010
And here's a video of Ben at the Fort Myers airport as we waited for our flight (2-hour delay). I couldn't believe what he could do! To me, this video just shows how motivating Daniel is for Ben.
Friday, May 7, 2010
Saturday, May 1, 2010
This of course provided the opportunity for lots of discussion about what everyone "thinks" the baby is. Which I find hilarious. I really do think it's crazy that people really think they "know" the sex of the baby. Twelve years ago, my mother was so convinced that my brother's wife was having a girl that she had a closet full of girl clothes when my NEPHEW was born. She had to return everything!
This conversation ALWAYS leads to this comment "it doesn't matter what it is, as long as it's healthy". It's just thrown out there...so flippantly...without any real thought behind what that means. And for some reason, it really bugs me. It's not the comment, it's the lack of thought behind it that irks me so much.
Today I wondered if the speaker (or anyone in the room) even thought about the fact that my boys "weren't healthy" when they were born. I concluded that maybe about 2 people in that room probably thought about that (even though almost all of them know about the boys' premature birth and Ben's CP). And it bugged me. I know I need to get over this, but for some reason, it really bugged me.
And I'm not even sure why. I almost feel silly posting this. I mean why on earth should someone's common-every-day-comment bug me so much?
I think it's because it shows me that they (as in the general public) don't have a freakin' clue how lucky they are to have a "regular" birth with the resultant "normal" child.
Another cousin of mine had a baby last week. The baby and mother stayed in the hospital ONE night and then went home. ONE NIGHT! And the baby went home...without medications...without oxygen or monitors...without numerous appointments already set up with neurologists / cardiologists / opthamoligists. I bet my cousin and her partner have not spent one minute thinking about how fortunate they are to have a "healthy baby".
And for some reason this lack of appreciation gets to me. I guess I just want them to really know how freakin' fortunate they are. And appreciate the perfect little bundle that they get to take home. And not just EXPECT to get a healthy baby...because many of us don't.
P.S. I hope that this post doesn't rub anyone the wrong way. After re-reading it, I realized that it may sound like I do not consider myself FORTUNATE to have Ben. And that is ABSOLUTELY NOT the case. I feel blessed every single day that I get to be Ben's mom. I really do.
Tuesday, April 27, 2010
I first went to Weight Watchers 15 years ago, when I was 20 years old. I weighed 177 pounds and lost about 30 pounds. I felt great. I thought I had this thing beaten. I had it all figured out.
But I didn’t have it all figured out. I stopped counting points and I stopped going to meetings. So, the weight came back on.
In 2007, I gave birth to my twin boys, Daniel and Benjamin. They came into this world a whole 10 weeks early. That’s not just early. That’s scary early. And they were sick. Scary sick. They spent 8 weeks in the hospital before coming home.
As the first year went on, we noticed that Ben was not developing like he should. He wasn’t rolling over, sitting up, or crawling. And I started eating. Eating like I’ve never eaten before. I worked tirelessly for him. Calling doctors, asking for referrals, and running him to appointments. I focused all my energy on him and none on myself.
Finally Ben was diagnosed with Cerebral Palsy. I had no idea that he had something so serious and life-altering. And with that diagnosis, I ate even more.
But with a diagnosis, came some peace. I finally knew what was going on. I could get Ben the help he needed. I could do research and reach out to other moms dealing with the same issues.
It also meant that I started looking at myself. And I knew I needed to make a change. A big change. If Ben wasn’t going to be able to walk, then I needed to be healthy and fit so I could help him. And after a few months of thought, I finally made the plunge. I joined Weight Watchers again.
And the weight came off. 37 pounds came off in 6 months. But it’s been a different journey this time. The weight came off slower. This time was about learning habits that will last for a lifetime.
I made one commitment to myself when I walked into that Weight Watchers meeting in January. I will go to meetings forever. That’s it. Because I know how inspirational they are. I know that during those 45 minutes, I am able to reflect on the past week. I think about what I want to do different next week. And I leave re-energized. Ready to take on the world.
It's now 7 months later. I no longer "attend" meetings. I lead them. But I pretty much feel the same way about the meetings as I did then. The members are (mostly) so inspirational and keep me motivated to keep this weight off. Plus, I have Ben. And he needs me. He needs me to be healthy and fit so that I can do whatever it is that he needs. And yes, he will probably walk someday and I won't need to carry him around so much, but family and kids require energy and a happy mom. And by doing this thing for "myself", I am doing something great for them.
Are you taking care of yourself?
Sunday, April 25, 2010
I dropped the boys off at my parent's at 8am this morning. My mom offered to take them for the morning so Clarence could go to work (it's still tax season here) and I could have a break. This has never happened before. My kids have never gone to my parent's house without me. My parent's have watched the boys for us before but always at our house.
And this wouldn't have happened if I hadn't planted the idea in her head. My parent's are great. They really are. I could ask them to do just about anything for us and they would do it. But they are not all that great at OFFERING help. They love the boys and see them fairly often, but always when it's convenient for them. Like on a Thursday morning when I have a thousand things to do. Never on a weekend when I'd like a break.
My parents have a very full life and for that I'm glad. But that doesn't leave much time for us sometimes.
I'm hoping that they all have a fantastic time this morning and that similar offers will be forthcoming. How much would I love it if they took them overnight sometime? How awesome would that be? I really wouldn't know what to do with myself then. Goodness, we might have to get dressed up and go out and maybe even stay up late drinking too much wine...and then maybe even sleep late.
A girl can dream, right?
Thursday, April 22, 2010
I really did not realize that parents of two-year-olds still struggle with sleep issues. I thought that once your baby learned to sleep through the night, then that was it. The sleep issue was over and done with. But alas...that is not so.
Ben was my champion sleeper way back when. And most of the time, he is still a good sleeper. But we sometimes struggle too. And this is one of those times. He has gotten used to us going in to him whenever he cries out. And that has caused the problem to grow. So tonight I fight the urge to go in. Even as he cries out "Mommyyyyyyy, Mommyyyyyy". It's so hard. But necessary.
What has surprised you about parentood?
Monday, April 19, 2010
Saturday, April 17, 2010
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!
Monday, April 12, 2010
Thank you to Kelly for introducing me to the world of blogging. When I first found out that Ben had CP, I was really looking to connect with other moms. So I posted a question on a forum called TwinStuff and that's where Kelly found me. She sent me an email and told me about her blog and to check out some other ones. So I did.
Thank you to Katy for being so darn interesting and funny and such a great mom to Charlie. When I first found her blog, I couldn't stop reading. I read the whole thing from the beginning (and when I say beginning, I mean very beginning, like from the ole' Barnyard days).
Thank you to Ellen for having such cute kids and showing me what having an older child with CP may look like.
Thank you to Hopeful Mother (whose blog is private) for finding me and connecting with me. Like Kelly (above), she has twins very close to Ben and Daniel's age...and one is typically-developing and one has been diagnosed with CP. It's always a good thing when you find out you aren't alone in the universe.
Thank you to Renee and her family for starting Exceptional Family TV. Can't wait for it to get up and running!
And last but definitely not least, a huge Thank You to my regular commenters:
I really do appreciate you taking the time to read my blog AND then actually comment on it. I love to read all your comments!
Sunday, April 11, 2010
I've been having sort of a rough day. Not a horrible day. Just a rough day.
Ben's been sick (again). This time with a cold (a few weeks back it was a really nasty flu with lots of vomitting and diahhrea). He's on the mend but we're all suffering from a lack of sleep. And of course, now Daniel is coming down with it. Fortunately, both boys slept well last night (not one peep heard) so I thought maybe we'd have a good day.
It LOOKED like a beautiful day today...when you were inside looking out. Outside it was sunny and not too cool, but crazy windy. And I really hate wind...especially wind like that. So we were stuck indoors.
So, we headed off to the mall this morning for one of our Sunday walks around the mall. It was OK. Ben struggled in his walker. He kept falling onto his knees. Then he'd want his father to carry him (which was fine...except he wouldn't want Daniel to use his walker when he wasn't using it). So lots of fighting over the walker ensued. Fun.
They went down for their nap fine. But woke up about 45 minutes earlier than normal. Daddy had gone to work for a few hours (we're in peak tax season here and he's a tax accountant) so here I was stuck with 2 cranky, somewhat sick boys.
Supper was another tough go...Daniel ate OK, but Ben basically just had some yogurt and ritz crackers. And it was all a fight. And then it was even a struggle to get them into their jammies and off to bed.
Everything we did today just felt difficult and exhausting. I guess we have those days sometimes, but Lord I wish we didn't. They are just too draining. And demoralizing. They make me feel like I can't do anything right. They make me feel like I don't enjoy my kids...like all I do is count down to bedtime.
So yeah. Kind of a sucky post to mark this blog's anniversary. That's just the way it goes sometimes. Somedays life is hard.