Cerebral Palsy 101

So I had a little shit fit the other day. The boy child has been complaining about having a sore back for a few weeks. At first I thought is was due to a busy day at school or the fact that we slacked off his therapy schedule over the holidays and he was just sore after getting back into our routine.

So finally when I had a few minutes I decided I should take a closer look.

I had him come stand in front of me and do some of his stretches and then I had him bend over while I took a look at his spine.

In my next breath I gasped, and tears immediately filled my eyes. I swear to you I could see a curve on his spine. It was right there staring at me. In an instant the painful teenage years of my brother came flooding back to me. The back brace, the body casts and the eventual surgery that had a steel rod (Harrington rod) fused to his spine. The fact that now twenty years later, his scoliosis is so strong he actually has a curve in the steel rod and nobody knows what to do about it.

I swear to you it was there. I could not get through to my doctor, so I called a dear friend of our who is an Osteopath (who has helped us out on many occassions). She could see him. I was not looking for any diagnosis, just a second set of eyes to tell me if she could see what I see and did she think we should visit our doctor.

Thankfully, after a treatment session, where she was able to loosen up his back muscles a bit. We both determined that there was nothing abnormal about his spine.

That day it must have been tension he was holding is his back to keep his balance or the way he was standing on his feet.

I am so very grateful that we do not have to start dealing with the added bonus of another condition so far.

Life with Cerebral Palsy is tricky most of the time and just when you think you have stuff under control it throws you a curve ball just to keep you on your toes.
:)

An email and I cried.

I can't remember if I mentioned it here or not and I can't be bothered to look for it right now.

At the end of August we said goodbye to the boy's Physiotherapist. She had been our therapist for a little over a year, probably one the the longest terms we have had with a physio as we have experienced alot of turn over due to maternity leaves, leaving for husbands, jobs, transitioning to a school age program and worse lay-offs and service cuts.

She was with us this year as were prepared for and experienced a new school year and a major surgery. She was there for us as we rehabbed from this surgery and helped the boy get to a place where he could see that he had more ability than before the surgery. Not easy for a kid who was in full leg casts and a wheelchair for 8 weeks.

She is from the east coast and came here to go to school and ended up getting a job here so she stayed a few more years.

This year however, as she traveled home for several family events and a wedding, she became a little withdrawn. Never with the children, but as an observer I could tell something was off. Without being nosey I assumed maybe a break up with a boyfriend or other relationship or work matters. I never asked.

But by the end of the summer she sat in a annual review meeting and told us that she would be done at the end of August and she was moving back home. I was very upset to say the least. She has been a total blessing to us, she is able to get the best work from my son, he adores her, she is straightforward with me and provides me with any and all information I request from her.

On the other hand I put myself in her shoes and realized how lonely she must be here and how if I live on the coast by the ocean, I'm sure I would only yearn to be back there. Hell I have lived in my region(never more than 15 mins from where I was born) my WHOLE life. I can only imagine her homesickness. So with a brave face for my son and for her I smiled and said how happy I was for her. When on the inside I was grieving.

Fast forward to today when I received an email from her where I could literally feel her happiness with each word she wrote. I won't lie I cried like a baby because I still miss her so much. I think I am fearful that the boy won't do as well or that I will do something wrong without her guidance. Probably because she helped us through an emotional decision (major surgery) and the surgery and rehab was also such an emotional and exhausting time for our family. Maybe that's why I get so emotional. Can you tell I'm emotional? (over use of the word)

We still have no replacement Physio and have been on our own for the last 4 weeks trying to muddle through and create our own treatment program and workout schedule and trying not to FUCK up all the progress that she/we made this summer.

I feel overwhelmed and exhausted that this is my problem but then I shouldn't because hey he is my kid and his success is in direct proportion to what I put into raising him. So with that I suck it up and smile.

I sent her back a great update email with all that the boy is doing and being and accomplishing.

And then I cried again. I miss her so much!

Perhaps, it is the strong fear that brings up the emotions

Freedom... Coming Soon

Well it seems like most of my blogging friends are taking a break, which means I should pick up the ball because I have been on a blogging break for a week or two already.

One Friend is anxiously awaiting the end of school so she can get on with her life and move to a new city!

Another is taking a step back and looking at her life with new eyes so she can get revved up about her awesome life again.

And me well I am just hanging out here with a boy in two casts who is about to burst at the seems with excitement that they are coming off on Tuesday and he will be able to move his ankles again.

We have been marking off the days on a calendar since he has been in casts for basically 7 weeks. The other night he said the cutest most innocent thing. "Mom, Will I be able to stand when I get my casts off? How will that work??"

The truth of it is that it will be really hard for awhile but with hard work and time he will be able to stand pretty well I imagine.

I never realized how tight his tendons were and how they were effecting his posture until he stood up straight for the first time. The kid had grown almost 3 inches if not a bit more. Amazing.

I'll try to keep up the posting in the next little while so my other entertaining friends can tend to their families and themselves and take a bloggie break.

Till tomorrow.

Post Op Update

I should be cooking dinner...

Well we are at 14 days post op and tomorrow we can get him on his feet and see if he can stand in the casts. This should make the whole toileting arrangement go smoother. Not a moment too soon. My chest muscles and lower back muscles are protesting big time! Everytime I breathe it hurts. I was at the doctor last week because I thought I was have heart or lung problems, Not so much...just stop lifting heavy things. Easy for her to say she doesn't have to try to get a 5 year old in and out of bed everyday.

Even scooching him up in his chair or on the couch pulls those pecs and not in a good way.

Now that I have gained some perspective I'm hoping to be able to write a little about this experience for other families who NEED to know what they are getting into.

It sounds all wonderful when the surgeon describes the positive outcomes and that many children are able to walk really well after surgery and rehab.

But they do not do a very good job of describing just how you are going to get through 2 weeks of sheer HELL and then 3 months of rehab to get to the glorious moment of easier movement for the child. Damn Surgeons, such pricks( and ours is a female)(kinda like lady cops, take themselves very seriously)


Suffice it to say it has been an experience, pain, poop, crying and laughing.

If I ever get two minutes to myself again I will tell you about it.

Pediatric Surgery Checklist

Here are a few things that we found very helpful to pack for when we took our 5 year old with Cerebral Palsy in for surgery.

Favorite sleep toy
mini juice boxes (sometimes they don't trust what the nurses are bringing them)
own blanket
own pillow
Extra pillows to prop up parts that have been put in Casts
pull ups (they don't always have enough control)
Children's tylenol or motrin incase they refuse to take the stuff the nurse has in the syringe to squirt in their mouth
Extra towels
Cloths
Wipes
A bucket
Barf Bags

We took him in, in his clothes but we brought his jammies to take him home in

Do a test run on how the child will fit in the car/carseat - Very important! we had to make a last minute call to borrow my parents truck when we realized that the boy and the wheelchair would not fit in the car at the same time. Doh!

Get your rental a week ahead of time so you can test it out, the kids get used to it and you can do the dry run mentioned above. It is worth the extra money.

Take said wheelchair with you. You'll appreciate knowing how everything works and the kid will not throw a fit at yet another new thing.

Read all paperwork very carefully at the hospital - If I would not have gone through our stuff they would have only done the surgery on one side and we would have to go back again. (boo hiss)

Feel free to have the surgeon explain the procedure to you AGAIN so that you know what is going to happen.

if I think of more i will add them.

Gotta go! Patient is calling.

Tendon Legthening surgery

So we are day 6 post op on the tendon legthening surgery for the boy's hamstrings and heel cords. He is pissed. he is mad he has lost mobility around the house.

Couple that with the fact that he cannot sit at a 90 degree angle yet, so we had to get creative with the toilet arrangements. Which involve a "pull up" vs a "diaper" the first time he had to do his business in the "pull up" he was so horrified. I feel sooooo bad for the little guy.

He is complaining less and less everyday which is giving me a little more time to catch up on all things internet, so I should be able to clear the back log of emails and post a little longer commentary on the surgery for those who are searching out these things.

Be back tomorrow. I still have lots of running around to do this afternoon just waiting for my Mom to come over to sit with the kids while I run out to get more pain meds, a small body pillow, cucumbers, and a well deserved massage for mummy.

Till tomorrow!

I wish this was longer and witty - but its all I got .

Time for an update HOLY cow I didn't realize how much time has passed since I last posted.

Tomorrow we head to the Children's hospital to have Bugaloo's surgery done. He is having a tendon lengthening procedure done to the hamstring and achilles tendons in both legs. he will be in full leg casts for the next 6-7 weeks.

I have had to obtain a wheelchair and inform the school and bus transportation and make arrangements for therapy, time off.

We finalized the arrangements with our mortgage finally, no thanks to Scotiabank those lazy greedy bitches.

We had a momentary issue with how we were going to transport the boy on the way home since we are not sure if he will fit in his car seat with his casts on. So we have a booster, we have the car seat and we'll just play it by ear.

I'm hoping to have more time for blogging on Thursday after we are home and in popsicle and ice cream mode.

I wish this was longer and more witty, but this is all I got.

New Buggy to Push

Seeing as how I was off today I decided to do one thing that would make me feel productive about my day.

I have been trying to search for a new stroller for us. Although the BugaLoo is doing fantastic with his therapy. Even though he is getting stronger and stronger and walking longer and longer. Even though he rarely uses his walker at school anymore (except on those days when it's his turn to take the attendance to the office). There are times when having a stroller for him would make his day and ours more enjoyable. Anywhere there are long distances between destinations, for example; the parking lot and the hospital where he receives his botox injections, the fairgrounds in my hometown, the museum, large all day events like picnics or when we took him to "A Day out with Thomas"

So I started looking today and I really like This Baby. Not sure how economic it will be to ship from the UK but I will check into it. I also found This which will work great and can hold a maximum of 110 lbs.

Time to get dinner started.

Botox, flu shot and Casts for AFOs

What a week we are having. And our week started on Friday. Friday we travelled to our Orthopedic Surgeon's hospital so that she could do Botox injections on the Bugaloo legs. (If your new here you can read about his CP in the CP posts)

This time our appointment was at 2:30pm which meant the Bug could each jello and drink until 10am and we did not have to leave for the hospital until 10:30am. (I'm not sure if this was better than leaving at 8:30 and trying to cram jello into him in the car until 9am). We get to the hospital (1hr 15 mins drive from our home)get registered, pick up our prescription at the pharmacy and then check in at the pedatric day surgery unit. There we (i mean the bug) is weighed, measured, blood pressured, heart and lungs checked out, we answer amillion questions and then...we WAIT. and wait some more and just when you start to get antsy, we wait some more.

Then finally one of us (this time me) gets to carry him in to the procedure room and try to calm a child that is freaking out because they are going to put a mask over his face that is going to make him go to sleep. (that's the hard part) I try telling him a story about the time I broke my arm when I was his age and had to have it fixed and they had to put a mask on my face and ..... he's not buying it. So I hold him while he crys and in seconds he falls asleep and I have to leave my little man there on the table. (It does get easy, not better, but easier)

15 mins later the doctor comes to tell us that she gave him 16 injections, he's waking up and asking for us and a pink popsicle.

We go to see him in recovery and he starts to cry. (this happens every time) We calm him and let him know he is safe. He finishes his popsicle and asks when can we go home. Soon buddy soon. About this time the hunger and thirst kick in. Apple juice, no problem. After an hour, the last set of checks, blood pressure, temp, and circulation, we are given the go ahead to leave. It is now 4:15pm and we are all starving, hubster and I had breakfast but no lunch and split a bag of chips and bottle of water in the waiting room. East Side Marios is right across from the hospital so we decide to go for it. They tell us to take it easy that heave food will make him sick after the anesthetic, but we decide to go for it!

We eat our fill and head home. What a day!

Tuesday I had to take the kids for flu shots and the Bug needed an immunization for school. The kids were soooo good. I can forgive the 3 minutes of full on chaos that ensued when the needles came out. The BUG looked right at the doctor and said,"that was horrible, just horrible". the doc tried to supress a giggle, but the bug caught her and gave her a dirty look. the peanut screamed bloody murder but who can blame her, she was second and already new what was coming.

Whoppee we're having fun now!

Today, we are going to orthotics clinic to get casted for new AFOs since the Bug had Botox and is also growing like a weed.

Today will be alot of waiting, we hope they are on time but will pack lots of snacks and activities since our appointment time is close to lunch and will probably span over the lunch hour.

thankfully this ends our medical appointments until the new year and we can look forward to celebrating the bug's birthday (24th) and Christmas.

Hoping your week is going better than mine. hang in there it's almost over.

Therapy day

Running a tight schedule today. I have to get all the presentations merged today, get all the handouts copies and ready to go into the packages all by noon.

The Bug has therapy today so that means I'm only a 1/2 day at work. Nothing like cramming a full day into a half day.

I have to tell I am just so darn pround of that kid of mine. I can probably count on one hand how many times he has been a pill during his therapy sessions. He works and workds HARD every single session.

The ladder


The Gait Walker


And practicing at home.


So proud! Let me know if you have any questions.

2500 view Give-Away

Getting Closer.

If you are visitor #2500. Drop me an email and you will win This

I read this book a little while ago and it had some great tips for blogging/posting.

It has taken me a little longer than I thought but I am finishing up my thoughts on some Cerebral Palsy topics and hope to post them later this week.

Have a great day!

To do List

So many things to do.

-Finish loading software on new laptop and upload some photo cards so I can clear them up
-Laundry (ugh)
-Paperwork from last 3 scrapbooking workshops I have hosted
-Start packing for big workshop next weekend
-finishing touches to CP blog post series for next week (?)
-Up load some photos to share with you guys
-Buy Food
-Clean up office
-Finishing touches on Design Team submissions for 2 Scrapbook Friends
-prepare for busy week next week

:)

Cerebral Palsy Topics

I haven't written about this topic in awhile, alot of things have been floating around in my head. I am getting considerable hits from several search engines on this topic and feel a responsibility to provide information that I have acquired.

So Look for folks next week a series of posts on Cerebral Palsy, I'm thinking the topics will most likely be:

Coping with Diagnosis
Treatment and decision making
Equipment
Our marriage and having a child with Cerebral Palsy
The future
how others see us
Links

And of course..... buggies I've been doing some more research.

All my Canadians have a great thanksgiving weekend and enjoy this fabulous weather.
To all my American friends Y'all keep going - 6 weeks till Thanksgiving for you.

Till Tuesday!

A long short week!

Hope everyone enjoyed their civic holiday. Somehow the August long weekend always kicks my butt. The short week that follows always seems soooooo long.

Can't believe that we are through the first week of August already! We are off to t-ball today and then we'll see where the wind takes us. The kids are tired from spending friday at the farm and could probably use a break today. I know I could use a break today. I am tired.

I ran at lunch all 4 days this week I probably should have taken one day off atleast but if you have been reading this blog for any amount of time you will know that I am really struggling with the concept of muscle weighs more than fat.

That number on the scale keeps climbing I am almost back to where I started which after 3.5 months on running 3 times a week. Is just...well...goddamned depressing.

I know... I know... I fucking know it's not the number on the scale it's how you feel and how your clothes fit. For this I am greatful because A) my jeans look fabulous on my sorry tired ass and B) I think I came within a smidgen of the fabled "runner's high" today. All I know is I didn't feel like a dirty rotten sticky stinky gym sock with a hole in it when I came in from running today.

So life is good.

The Bugaloo is showing signs of his hamstings tightening up again and I can't seem to get a hold of the docs office to get our next round of botox booked. I have been trying to get him in before school starts so he doesn't have to miss a day of school. He's back to toe walking and complaining about it hurting when we ask him to stand flat footed. He has burned through ANOTHER pair of shoes so I will have to break in the spares and go shopping for new spares. Anyone know where I can buy shares in Nike?

The Peanut is progressing nicely through the terrible twos by being...well..what else TERRIBLE! we are on to pouting and generally being disagreeable ALOT. But when she's good she is really good and really CUTE. So we will keep her.

Don't forget to vote!

Don't forget to vote for a post topic for tomorrow!

Running and Buggies

Well first of all I have to apologize to everyone in the free world who is looking for the Bugaloo Baby Buggy Stroller. The word search activity on that phrase connecting people to my blog has been extreme. I wish I knew more about the stroller all I do know is that it was out of my price range and therefore I stopped looking for it.

AND THEN.... I hope instead of finding your stroller you found a little humour with a tip here and there to make your life easier.

AND THEN... for those of you who travelled here due to a search on Cerebral palsy. I will do my best to provide a few more posts on this subject in hopes of helping you out, treatment, behaviour, parenting, school, my personal feelings, fundraising,etc. You tell me what you would like to know>>>.

AND THEN.....

Running, it is going well as far as running goes... we are upto 7 mins of continuous running before we take a 1 minute break so all in all not bad. Am I losing any inches YES Ma'am. Am I losing any weight Hell NO and I am PISSED off (with a capital P) How can so much work not reap any rewards in the weight loss category. Boo Hiss. And the first person who tells me it's because I am gaining muscle mass can take a long hard suck on my lily white A$$! I want to see those numbers drop damn it!

AND THEN.... No more and then For now!

Don't for get to vote!

Look to the right and vote on a topic for my friday post.

Cerebral Palsy Part 4

At a year old, BugaLoo was in regular therapy at KidsAbility Children’s Treatment Centre. He had a team that consisted of a Physiotherapist, Occupational Therapist and a Speech Language Pathologist.

We also had regular appointments with our family doctor and the Pediatrician. Every time I turned around I was loading him in the car, the worst part was, no one had any answers of any kind. “wait and see” was the general approach. “We have no way of knowing” was another ambiguous answer we received.

It was also at this time I had to return to work. Now many Moms of children with disabilities struggle with whether or not to go back to work. I didn’t not have this decision to struggle over…I HAD TO go back to work. There was no choice. Hubby was in the middle of an apprenticeship and had 2 more sessions of school to complete. At the time I was making more money than him AND I had full benefits through my company. There was NO choice! We never would have made it financially if I didn’t go back to work. I had already extended my leave from 6

The first day back to work I was fine until I walked through the front door. I started to cry. I was totally overwhelmed. It was 8:30 am and I already felt like I had put in a full day, getting the baby ready and over to my M-I-L’s. I had to detour to the washroom to collect myself. The next hour was casual chit chat with co-workers and showing the requisite photos. 10:30 am was my first meeting with my boss the then VP of Operations. “How are you doing?” he asked. POOF! I burst into tears. Trust me I didn’t want to but I did. “Are you okay?” Again POOF more tears. “I am fine”, I resolved. “Should we explore a more gradual return to work?, do you need some more time?” he patronized me. “No, I am just a little overwhelmed with my schedule… There might be something wrong with Bug they think it might be Cerebral Palsy” I meeked out. This was the first time I had spoken the sentence out loud and the words haunted me… I said this partly because I knew it would buy me some time to collect my thoughts (while my boss weighed the gravity of my remark) and partly to make him feel bad for patronizing me. We then were able to move forward with a discussion about using my vacation time to take 1 day a week off for appointments for the rest of the year (I returned to work in November) and then we would re-evaluate the situation in January with hopefully more information.

Even those this boss was not my favorite and I did not want to share my personal struggles with him. This was the key to keeping my sanity, working full time and taking care of things for my baby. In retrospect I wish I would have realized what a challenge returning to work would be and spoken with my HR department a month or two before returning so that I could have worked out a plan and returned to work with more confidence instead of all the anxiety and trying to keep my emotions in check.

Ah the bog calls to me.

I can't believe it has been 4 days, honestly.

So, reflexology treatment on Monday - AWESOME Thanks Jenn

Quick stop at two of my favorite scrapbooking stores 2 Scrapbook Friends and The Scrapping Turtle to look for some elusive paper I need for a project. No Luck Pooh!

Spent the rest of the days with the kiddos making crafty shit around the house. They were pushing my patience by the end of the day I was pretty happy to see them sleeping that night.

Tuesday, back to work and start training my summer student. Yes the irony is not lost on me that it was JULY 22nd when my summer student started to help me out. Double Pooh!

Some quick training a 20th anniversary celebration for a co-worker and then I was off to pick up the Bugaloo for his therapy session.

We met out new Physiotherapist this week since we are losing our PT and our Therapy Aide due to Government funding cuts to Childrens Treatment Centres. Don't get me started whole new post. The Bug seemed to take it well and gave our new therapist a hug at the end of the session so I would say it went well.

Wednesday, more training and working on a scrapping project that I am really excited about. Can't tell you about it for another week or so. It's a SURPRISE.

And now today, the pressure to post was eating at me, so here I am. Sorry it is sooooo lame but I have a few irons in the fire and will have some more posts coming up. Including some scrapbook page designs, another instalment of my thought on disability and some work life balance stuff. Well assuming I have enough to actually write a post about that.

Running is going well although I am not losing any weight my body continues to change shape and my pants are looser, can't complain about that.

Wow

Geez, I finally had more than a few minutes to look at my blog today and realized how out dated it is so I hope I can spend more than a few minutes here to update a few things.

I took the Bug to Vacation Bible School. So updating photos will have to wait but maybe I can get at a few other things. I am on vacation today but I had my niece come to babysit anyways so I would have time to catch up on a few things. IE the blog, laundry (pooh), and some business stuff because some people owe me money.

I totally missed a crop opportunity last night and I forgot all about it until I climbed into bed. I am so pissed. Sorry L.

So today the peanut was up at.....wait for it.....5:30 AM crazy kid. Then her darling father put her in our room at 6AM ASSHAT! So she messed around in our bed for a 1/2 hour and then I couldn't take it anymore so I got and drank alot of coffee.

So now I have three loads of laundry out of the way - check
Cleaned out some small clothes out of kids room and boxes up - check
Started putting laundry away - check
Posting on blog - check
update a few things on blog - check

Soon I have to go pick up the Bug, then lunch and then this afternoon, we have our meeting with the social worker to discuss promoting self confidence and self esteem and how to help him answers questions that he gets from other kids, adults, teachers and family members.

After that I get to take a quick detour and see my sister for a badly needed haircut!

Whew busy day.