Thursday, November 27, 2014

Selfie Series - Part 2

Before I gave you "Asher, the series of selfies". Now I present Nolan (a small sampling). And I might note while some of Asher's were fluke, I guarantee every one of this little ham's are posed:












This kid knows his way around my phone. Notice he even changes the color of the photos?! "Mama I just want to look at pictures" turns into 100 shots of Nolan's face. Good thing he's so cute.

Sunday, November 23, 2014

This Is Asher's Brain on Drugs

Remember those commercials (in the 80s?) of an egg "This is your brain" and then a fried egg "This is your brain on drugs", trying to illustrate the point that drugs fry your brain? Please tell me someone remembers those?! Well if in the original commercial it's an egg vs. a fried egg then in Asher's case it's an egg vs. a cute little fluffy chicken hatching from an egg. That's how good those drugs are.

No that's not it at all. I don't know what I'm talking about. Ignore that weirdly misguided metaphor. All of that said, Asher's on drugs. I think I have alluded to him trying drug therapy here and there, but I've never elaborated on it. Basically it's been in the works for months (almost a year actually) and now it's finally underway. So let me explain.

Back when we went to Shriner's last January, our orthopedic surgeon there floated the idea of putting Asher on medication - specifically Baclofen. Baclofen is traditionally used in children with spastic CP, which Asher does not have; however, they've also tended to see results in children with athetoid/dyskinetic/dystonic/hypotonic (whatever we're calling Asher's type of CP these days). They sent us home with a ton of literature and some thinking to do.

Fast forward then to the summer. We had another Shriner's visit on the horizon, as well as check-ins with our orthopedic surgeon and neurologist in Victoria. We saw the neurologist here first and while she was totally on board with Baclofen at first, the more she started talking the more she thought Asher might benefit from Sinemet - or levodopa/carbidopa - used in Parkinson's patients. We left her with even more thinking to do because now another drug had been introduced into the equation.

So back to Shriner's we went. We met a new neurologist there, and while she respected our Victoria neuro's opinion, she personally didn't have a lot of experience with Sinemet so she was suggesting Baclofen. Definitely Baclofen.

So now we've got two votes Baclofen, one vote Sinemet, with the all-important parents' vote undecided. Oy.

Enter our orthopedic surgeon here in town. Can you guess what he suggested? Of course Sinemet because why wouldn't we have 2 doctors' votes per side? So now we lucky parents are left to be the tie breakers. Talk about a decision.

So we discussed, and researched, and wavered, and discussed some more. We saw the benefits of Baclofen and were able to get concrete data on how it has worked numerous times on kids with CP - but not necessarily Asher's type of CP. We also saw the potential benefits of Sinemet, although there was little to no research on the usage of the drug on anyone but adults with Parkinsons. Where to go now?

Well I have an awesome circle of parents whose kids have CP and I turned to them for advice. And then I consulted my life long friend who happens to be a pharmacist.  We had a very in-depth, thoughtful conversation that included pros, cons, side effects, and our overall rationale for putting Asher on meds to begin with.

Which I guess I should pause to explain. The theory behind putting Asher on medication is to get some of his movements under control. Not to expect a miracle and suddenly have him jumping out of his chair and walking, but to help improve the quality of his movement. He is not in pain and there is no real need for any drug - all we're looking for is quality here. So in that respect it made that part of the decision making easy: If the drug works, he stays on it; if it doesn't work, or there's side effects, he goes off. No question.

Anyway back to the story at hand. Armed with a ton of research, we decided for a multitude of reasons to try Sinemet first, even though there was far less evidence aside from anecdotal. I've already bored you for long enough so I'll spare you those details, but once our decision was made we felt good about it. Well as good as you possibly can knowing you are putting your small child on drugs that alter the chemicals in his brain.

So it was a slow introduction. A very small dose the first week followed by increasing increments over four weeks, watching for both benefits and side effects. I'll start first by saying the side effects have been negligible, if at all, so we've felt confident to continue. The benefits however, were not quite as obvious to spot at first.

If you asked me what I saw at home in the way of changes, I'd say very little. His self feeding was always pretty good and in terms of other self care and mobility, he still needs a lot of help. Because we have been so busy at home lately I haven't done a lot of fine motor stuff with him so have had no real measuring stick for improvement. His EA however, had a different story from school. She has been updating me all along, but when I saw it in print (I requested an email to show the neurologist her findings) I was pretty stunned to see it all laid out:

"He has less uncontrolled jerky movements than when we first started kindergarten. With almost all fine motor activities I have noticed that he has far more control. So when writing or tracing letters he can now complete a full letter or tracing before his arm jerks away. At the beginning of the year I would support his elbow and restrict allowable movement but I am able to stabilize the paper only and he is doing this independently with only his arm straps. He is also able to keep his tracing within two lines without assistance for the width of a sheet of paper. Coloring and drawing has also improved.

His right hand also seems far more flexible with reduced contractions. He is now able to bring it across his body and forward to push desired objects for his left hand to reach. At first his right hand was often contracted backwards when he was engaged in any activities. He can also reach his right hand into the sink for hand washing with little or no assistance.

I have noticed more core stability than before meds. I find that I can provide minimal support while sitting at the carpet, criss cross, and he is able to stabilize for far longer than he did before the meds. Today, it was about 20 secs. after yoga in the afternoon which I felt was great as it is end of week and afternoon. He seems far less "wobbly" and able to maintain a more typical sitting position. Also when we are doing any standing in the classroom I have found that I need to support his upper torso less than before. He is better able to support his upper torso with only hip and leg (straightening) support.

He is also able to receive and hold onto objects better in his left hand. From peers during play activities as well as holding work while heading to a table for completion."


So I'd say there's no arguing that she sees some substantial changes in him??! And if her words weren't enough - how about some photographic evidence from school:

Exhibit A: Pre-printing

At the start of the year with his EA holding his arm at the elbow

On medication, with no support besides neoprene armstraps and his EA holding his paper still

Exhibit B - Printing letters

At the start of the year, with his EA holding his arm at the elbow


On medication, with no support besides neoprene armstraps and his EA holding his paper still

Isn't that remarkable?! I am so proud of him and amazed by the improvements!! Now truth be told, I really wish we could see more practical changes at home too (although I did just see him complete a puzzle completely on his own (no one holding the puzzle, supporting his arm, and no arm straps on) which he's never been able to do before).  Buuuut, and this is an important but, if the quality of his school work improves that is a big and important gain. Not because I am remotely concerned about how he is fairing at school - but because I am concerned about how much physical effort it takes him to complete tasks. If medication can help him to exude less effort while creating the same, or ideally improved, output, then that is a HUGE win.

We saw the neurologist Friday and we now have a three month prescription for a slightly higher dose. As from the beginning, if we see side effects we will cut the dose or take him off it all together but at this point there is no reason to think that's going to happen. And at every appointment we will re-evaluate how we want to go forward.

But for now, these small changes are really big. Huge in fact. 

Next up botox. But that's a whole other post. 

Tuesday, November 18, 2014

What Would a Father Give?

This guy, using his good looks for a great cause.


Keep an eye out for him in the Times Colonist November 18 (today!) and 27, and December 13. Also, he'll be on BC Transit buses so commuters please snap a picture and send to us if you see one!

Monday, November 17, 2014

Prematurity Turns 5

Prematurity turned 5 years old recently.

That is, prematurity turned five years old for us recently. Because prior to the birth of my boys five years ago I had no idea the toll prematurity could take on a family. Not just at the time, but for the rest of their lives.

We have so so much to celebrate in the five years since our babies were born more than three months early, and will continue celebrating two happy, healthy boys long term. Sure, maybe they did not defy every odd of prematurity like some preemies do but there is no denying that they are miracles.

But for all of our gains, and all of the things we have to celebrate, there are very real losses that will also stay with us. None of us will ever recover from the boys' premature birth. Yes, we have moved on as much as can be expected, but it caused trauma and scars that will never heal.

So today, on World Prematurity Day, I will remind you of how much this family has gained in the way of two brilliant boys who have survived and thrived though prematurity. But I also ask you to take a moment and think of all we've lost, and send some positive vibes out into the universe to all the families who are right now, at this moment, going through what we went through five years ago.



We are so blessed by these beautiful, five year old premature babies. To see more of their fifth birthday party, click here

Wednesday, November 12, 2014

We All Have Our Thing

For some people it's Christmas. Out come the decorations on November 1st and they're talking about it long beforehand.

For others, it's Halloween. Their houses are veritable haunted mansions and their costumes look like a Hollywood makeup artist spent the day with them.

For my mom, it was St. Patrick's Day. Being Irish, that was her way to keep her dad's memory alive. Green food, green clothes, shamrocks everywhere.

I'm not any of those people. I love the holidays. I even love to decorate. But none of those things get me going. You know what does though?

Birthday Parties. Birthday parties are my thing. 

Since Rio was 3 years old, I have never thrown a party for any of the kids that did not have a theme. If you've been to one of my parties you know that doesn't mean "pick out some matching napkins and goodie bags and call it a day". You know that means the invitations match the font match the cake match the snacks (literally dyed to match at times) match the decorations match the goodie bags. I mean business people, I mean business. And I definitely have a problem. But I love it, I truly do. And none of this breaks the bank either - that's part of the appeal. I rock these parties on a budget, yo! It's my creativity at its finest.

So you can imagine my disappointment this year as the boys' themed party (to be unveiled on Saturday) is not coming together as planned. The theme is barely there. I mean come on, I have just moved into a new house and my mind is not in the game. And yes, this was a ridiculous weekend to hold the party, but it is the last weekend before Christmas that Jordan is off, so we had to. So I decided to do my best and try to pull it together.

But today you guys, I suffered a setback. The invitations I had ordered online were not ready. Five business days turned into eight and they still weren't here. Last Friday I privately whispered to the parents that an invitation would be coming on Wednesday, but Wednesday arose and they still weren't ready.

So you know what I had to do? I had to go to the party store and buy invitations. GASP. Buy invitations. As Jordan said "You've turned into a regular mom". And not that there is anything wrong with a regular mom. For them. But remember how birthday parties are my thing? Totally unacceptable. For me.

And because I didn't want to go against my theme and buy say, super hero or ninja turtle invites that were somewhat cute, I got the most generic, non-descript ones I could find. And they were hideous. And I scribbled the party details in each card in the parking lot so I could run into school at the end of the day and hand them to the moms. And then hang my head in shame and try not to cry. And really try not to beat myself up for the fact that if I was actually firing on all cylinders, I would have had paper ready to make home made ones - that went with the theme - on the off chance the online invitations didn't show up. But no, I just dropped the ball all around.

And yes, I know I'm insane. I do. Most people would not be having a party this year. And those daring to have one a week after moving in would be throwing down a blanket on the floor and a bag of chips and letting the kids go at it.

But remember, that's not me.

Oh the good old days when I had my priorities straight

So there will be a party on Saturday. And a theme of some sort will be achieved, of that you can be sure. And you know what, no one will care but me. Because normal people don't care about things to this level of detail, and the kids really don't care as long as there's cake and goodie bags. But that's alright because birthday parties are my thing. And we all have our thing, right?

Monday, November 10, 2014

Renovation - Week 18

Exactly four months to the day from when the renovation began, we finally moved home. I say finally with mixed emotion. On the one hand, it's been a long haul but on the other hand I cannot believe how much has transpired during this time.

It feels so good to sleep in our own bedrooms - for all three nights of it so far. For the foreseeable future children will continue sleep on mattresses on the floor but the important thing is the four walls that will surround us are our walls. 

There is still a lot to do. Sure, all of the big bits are finished but there are a lot of fiddly bits left. And there's the unpacking. And the clean up. And some mistakes by trades that need to be fixed. And. And. And. Needless to say we will not be left without things that require "finishing" for weeks or likely months. Oh and did I mention two little boys are having a birthday party here on Saturday?! We better move quickly.

Basically every room in the house has a corner that looks something like this

To say we are happy to be home and ecstatic with the results of this project do not do it justice. I am IN LOVE with this house. It is beautiful, functional, and will last us all into the future. And because we are now officially home, this is the last post specific to the renovation because there's not much left to say! Can you believe it?!?

Soon enough I'll even post some photos, and maybe even a video tour. Just let us get unpacked first?!



Monday, November 3, 2014

Renovation - Week 17

Week 17 was a big one at the house, especially since we also had Halloween and a very special fifth birthday!

Things are really coming along. We are so close I can taste it. That said, it's kind of unbelievable I'm claiming we're nearly done, yet just this week our front yard looked like this?


There are sooo many little jobs left for Jordan to do before we can move in. Never have I been so thankful for how handy he is and how much he is finishing that others would have to pay someone to do. I too, can be helpful now that we are on site. I mean who else is going to do the really glamourous jobs like cleaning four months of construction gunk out of window sills and throwing endless garbage in a dumpster?!

Saturday, November 1, 2014

FIVE!

Five years ago, at 6:27 and 6:28 pm, the two bravest people I know came into the world fighting. Hours, if not minutes, from perishing from the infection that was ravaging him, Asher led the charge and took matters in his own hands, deciding "better out than in".  The start to their life was one giant challenge to overcome but somehow they always managed to. 

Jordan's first sighting of his sons was as they were wheeled past him from the OR to the NICU, not having been allowed at their birth. My first look at them was four hours later when I was wheeled into the NICU on a stretcher, only staring at them for a few brief seconds from the space between my bed and theirs. We wouldn't lay a hand on them for another day or hold them for weeks. While they scarcely resembled babies in any form we knew, we had two sons. 


While the day of their birth will never be remembered as a happy one, today is. These boys give us so much to celebrate. Over the course of the past five years I have felt every emotion possible but most notably awe. How these boys have survived through all they've been through, which such bravery and grace, still astounds me. They are obsessed with super heros but little do they know they are the real heros.

Asher and Nolan you bless us in ways you will never understand. You are a gift. You are happy, charming, brilliant, and a joy to behold. 

Happy birthday to our boys. You are so loved.