Monday, February 28, 2011

Does he Walk Yet?

Of course this was coming. The point of no return. The time when it becomes blatantly obvious that something is 'up' with Kingsley. The time when people start outright asking me.  Perfect strangers asking me innocent questions I have no idea how to answer.  I've had a handful of encounters in the last month, each one equally awkward and full of me fumbling for the right words. It's not like I've had a year and a half to prepare myself or anything ;) I think the problem is threefold. One - these people jump out of nowhere with their darn questions.  I just get caught off guard. Two - I am one of those people who smile and giggle at the most inopportune times. Serious conversations, bad news, someones sickbed, I am the girl who reacts by smiling. The more inappropriate, the harder it is for me to wipe the stupid grin. Three - although I know full well that people mean well with their questions, sometimes people say stupid things. I usually have to pause and restrain myself and while forcing myself to say something polite, I usually just mumble mumbles in response.

So, here is how a few of these fabulously wrong conversations have gone. You know, so you can learn what not to say. You're welcome. ;)

Number 1, hospital setting

Lady wandering the halls: Oh, how beautiful, yadda yadda, how old is he?
Me: 13 months
Lady: Is he walking yet?
Me: No, he has spina bifida
Lady: Oh, I only wondered if he could walk.
Me: Um.
(Lady walks away fast)

OK, I blame the hospital setting for my assumption that people would know what SB was. She clearly did not. She looked at me like I had said 'No, he has a broken finger' like she had no idea why this random label would be relevant to her innocent question of whether or not he was walking.  Not that SB means you aren't going to walk or anything, but it explains why he isn't walking.  Lesson One: I live in a bubble. The people outside the bubble have never heard of SB.

Number 2, model home

Real Estate Agent: You like the house?
Jeff: Yeah, it's nice. We're actually looking for something more accessible though. Our son is going to be in a wheelchair.
REA: OH NO!!! Oh my gosh! I'm so SORRY!!!
Me: (stupid grin)
REA: How old is he?
Jeff: He's one.
REA: Oh, WOW! Are you sure? OMG, that's AWWWWWFUL.
Me: (grin gets bigger)
REA gives me a very puzzled look. Looks at Jeff, then back at me. Tries to figure out the joke. Decides I'm looney toons and only talks to Jeff after that and pretends I'm not there.


In my defense, it still seems a bit surreal. But really, the over-the-top sympathy responses are weird to me. I mean, look at Kingsley. What exactly are they sorry for? He rocks. Lesson Two: people think wheelchairs are the end of the world. *ahem* Not that I've ever thought that way or anything.

Number 3, shoe store

Sales Lady: So, is he getting his first pair of real shoes?
Me: Yep, first ones.
SL: Is he walking yet?
Me: Nope.
SL: Is he cruising then, like along the couches?
Me: Nope.
SL: Standing?
Me: Nope.
SL: Probably gets into enough trouble crawling around, eh?
Me: Nope. He doesn't move his legs. He uses a standing frame to stand up and he needs some shoes to wear in that.
SL: Oh, okay. We get lots of kids in here who use standing frames. You'll want something like this... (selects perfect shoes for King on the first try and fully explains the benefits of why)


Alright, I was going off the first experience where the lady had no idea what SB was. Turns out when I later said he had SB, the lady did know what it was and asked if I found out in utero and stuff like that. It was a high end shoe store recommended by King's PT and I guess they get a lot of special needs kids coming in for shoes. Lesson Three: I'm not the only one in this bubble after all.

Number 4, doctors office

Other Mom (to her mom in a loud voice while sitting right beside me): Aw, look how cute he is.
Grandma: Yeah, he's really cute!
OM: He's probably older than (her kid), don't you think?
GM: Oh, yeah, he's probably at least one.
OM: OHHHHH!! Look at his FOOT! Poor baby. Oh, poor baby! That looks like it hurts!
[Kingsley is wearing his splint on his right foot]
GM: Aw, poor guy! Oh, that does look like it hurts!
OM: Oh, I hope it doesn't hurt too much. I wonder what happened. Is he okay? What's wrong with him? Does it hurt him? [directed at me]
Me: Uh, nope. He's not hurt. Doesn't hurt him at all. It just keeps his foot in the right position.
OM: Oh. Oh. Well, that's good.
GM: Aw, poor guy.

I just didn't feel like having The Talk with these people. I could tell it would go down the same overly sympathetic route that would leave me either laughing inappropriately or asking them what was wrong with their kid (which would've been snarky since I heard them say why he was there and it was pretty mundane). Lesson Four: people are going to assume Kingsley is suffering and will say stupid things. I need to just not let this bother me.

Now that I've had these ever-so-enlightening experiences, I should really start coming up with some simple answers to have in my back pocket. Or I'll just fumble through the next couple of years and then teach him to answer for himself as soon as he can string a sentence together ;) Save me from myself!

Tuesday, February 22, 2011

Up and Away

Dear Blogging World, 


Yes, it's me Kingsley again. Just wanted to let you know I have some exciting news. 


I'm standing up. Now, I will be able to write more. Mommy can't hide her computer from me!



Check him out!! We had the HUGEST day today. So many awesome things, where do I even begin? Well, I guess right there ^^ Kingsley got his stander! My baby is standing up all on his own. Well, sort of. Close enough!

Today we went in to meet with our PT and get the stander fitted. There were two men that were there to make modifications and adjustments as needed and they ended up doing it right away. I discovered that Kingsley doesn't have stranger anxiety like I thought. Turns out he has women-anxiety. All those pretty nurses in the hospital have done a number on him it seems, but he was all smiles and babbles for the guys helping out today. Adorable.

I forgot my camera, if you can believe that. I even forgot my phone. Huge Mom: Fail there. You'll have to trust me though, Kingsley was amazing. A rockstar? You better believe it! He stood up in the stander after they fitted it for him and just did it like it was nothing. No complaining, not a whine. I couldn't get over how tall he was in it! It was like my baby boy was suddenly the one year old he really is. Wild.


Sidebar for the non-SB'ers: standing challenges lungs and heart in a good way, makes the circulatory system work differently, helps with bone development, and makes bowel/bladder function better, among other things. It also provides a different perspective of the world and had cognitive benefits. Since Kingsley is at the age where most kids can stand up, but he can't, we will put him in a stander to mimic independent standing to get all of these benefits. It will also engage any muscles that he may have functioning in, but have yet been under/unchallenged. 

Later this afternoon, I put him in it again. He did awesome. I expected that maybe he'd be okay for a couple of minutes and was told to just keep it to that - take him out as soon as he seemed unhappy. Unhappy?? Hardly! I had to finally take him out of it after 20 minutes because I was worried about pressure marks and the wrath of his PT ;) He was completely happy standing there, playing with his toys like it was no big deal that this was the first time he had ever stood up, EVER. He was working hard though, grunting away as he played like he was putting in the workout of his life. Cordelia desperately wanted her turn. Why? I don't know, she's two. I guess that looks like fun.

Also, while we were meeting with his PT we got to try out the two castor carts that she had dug up for us. We actually ended up taking both home as they're a bit different and we want to see which Kingsley seems to do better with. One has amazing response and steers so easily, but the wheels are a bit awkward for him to get. The other is older, a bit beat up, but the wheels are in a great place for him. I could not believe how he seemed to immediately understand what the deal was. We strapped him in and he reached out and touched the wheel almost right away.



So far, he's diggin them. He sits in both pretty comfortably and thinks his sisters pushing him around is HILARIOUS! Poor kid is going to get a brain injury from all the bumper cars Cordelia was trying to put him through.


As you can see there, the girls are also loving the carts. Rachel raced around the house yelling: "It's just like being in a WHEELCHAIR!!" with the same excitement that you might yell: "It's just like FLYING!" She loved it.  Cordelia was also a fan, but could not master the steering as quickly as Rachel. She also did not like that Rachel kept trying to lap her by bumping her cart out of the way.


As if that wasn't enough excitement for one day, today marks three weeks for Kingsley (less a day, but close enough) which means we're good to resume normal life. He got to have a normal bath (yea!) and sit in his booster seat again at dinner.  We have been talking about starting finger foods ever since I realized his gag reflex has really eased up post-decompression, but then he couldn't sit up and yadda yadda. So, today was the day.


He didn't eat a bit. Not a one. But, it was there and he had a plate. It was a big step for us.


Look at that mastery of fine motor skills! What a pincer star. ;)  He even did the obligatory I-Have-a-Plate-and-I'm-a-Baby-Therefore-I-Must....


Dump-and...


Toss.

Good job, buddy. Maybe tomorrow we'll actually get something in his mouth. Maybe. Cordelia was quite okay with him not eating his dinner. She came and practically licked the tray. Yup, that's my girl.

Soooo... How was it, really? Seeing my baby get his first wheels and some serious equipment? No lie, it was awesome. I got a little teary, but it was honestly happy tears. I was expecting some angst. A little heartache? Nope. I think all the other SB mama's out there have trained me well. All I saw was doors opening up. The light in his eye when he saw the view from waaaay up in his stander. The way he watched his sisters zoom around as if he was trying to figure out how they were doing it. The way his hands just rested, ever so casually, on the wheels. I'm so excited for him! Rachel has the right idea. This is a really cool thing.

Monday, February 21, 2011

Murderball

I got something this weekend. Something that is one part smack on the face, one part big hug. That something is: perspective.

There is this fantastic documentary that came out in 2005 called Murderball. I saw it years ago after it was nominated for an Oscar and loved it then. I rented it again this weekend because, well, it's about guys in wheelchairs.

I just lost you, right? Documentary + Wheelchairs = wahn wahn waaaaahn.  No way, Jose. It's so good. Not at all what you're thinking. No tears, no sap, no feel-good-ness. I'm not really sure how to sell this to you, other than to say that you've just got to trust me on this one: it's a great movie. Have a look at the trailer http://www.youtube.com/watch?v=_kaT5dDiISw  Jeff watched it with me and loved it as well. In fact, it was rated as the #1 sports movie to date. Yup. Sports movie.

Murderball is the original name for wheelchair rugby, which is a game for quadriplegics, meaning that these guys have impairment in all four limbs, unlike Kingsley who just has some impairment in two limbs.  None of the guys featured in the documentary were born wheelchair-bound, most had either contracted a disease that put them in a chair or had been in accidents (quite the Don't Drink and Drive ad).

There was one part in the movie where they featured a guy who broke his neck more recently. He's in rehab after his accident when he's introduced to one of the murderball players and the sport. He's still new to the chair, he's still a bit vulnerable. He still asks questions like, "Would I get kicked off the team if I recovered and started walking again?" When he goes home and his mom is excitedly showing him all of the accessible changes she's made to his living space, he asks for a moment because as awesome as it is, 'he's in a wheelchair and that really sucks.'  I was feeling this guy.

However, here is where the perspective came in. These guys aren't anything like Kingsley. For one, their level of injury is up in the cervical area for the most part, a whole huge thoracic section above King.  However, to be all woah-is-them because they're so much more impaired (and even writing that!) would be ridiculous. They are world-class, Olympic athletes. Also, because they weren't born this way, they had to accept that they once walked and now will not. In a lot of ways, they are more like me than Kingsley. It's not Kingsley that would have to adjust to being on wheels, it's me that has to adjust to that reality instead.  And if these guys can get over that and become Olympians, then perhaps it's time that I did as well. It obviously doesn't happen overnight, but at some point the choice has to be made to either pull the covers over your head and wallow, or get over it.

Time to see the silver lining, because yes, there is one.  Without the chair, these men would not have met. They would not have become Olympians. OLYMPIANS. For real! Talk about making lemonade out of lemons. Obviously, I have no idea where Kingsley will end up when he's older. For me though, without SB entering our lives like this... well, I'd be back at work instead of loving up all three of my kids every day, all day. I wouldn't have met this whole world of families that are going through the same thing as us, which would be sad because so many of them are awesome in ways that have nothing to do with SB! I wouldn't be blogging ;) I wouldn't be looking at/planning for an awesome new house. I wouldn't have developed a new appreciation for normal days where nothing and everything happens. My life would've just gone on, la-dee-da, without being forced to stop and really re-evaluate what is going on and what really matters.  Silver linings abound!

Friday, February 18, 2011

Spring Forward

When Kingsley was in the hospital, we were sent a huge planter with daffodils in it. A couple of days ago, I came downstairs to find...

Tulips! Who knew? All along, I had the tulips in my house. Can't escape Holland if I tried. ;)

Kingsley is doing well. He's recovering nicely and I am counting the days until we can just pick him up and go. The last few days have been long, attempting to keep him occupied on his tummy is exhausting!  However, it's a small thing to be whining about when he's doing so amazing otherwise.

His OT arrived with the scooter boards! She brought two different ones, one was a banana looking thing and the other was a padded square with wheels. The padded square did not go over well with him. It raises him up pretty high off the ground and then his arms dangle up in front and he has to keep his head up all on his own, like cobra with no hands. The banana thing however ended up being kind of cool. It allows his arms to move freely and he can put his chin down if he wants. 


He went on it alright, but then promptly decided that he did not enjoy it. He even figured out how to roll off of it, sneaky kid. I tried it again the next day and it was much better! He moves backward, but it's a start. He's got the hang of pushing himself. He went down the hall all by himself.

 Hi Mom, yeah, this might be alright... No! I can't take it! Get me off!!

Baby steps. He'll get used to it! We're trying to keep him occupied while on it and give him reasons to want to be on it. Soon enough, he'll get there. In the meantime, Rachel and Cordelia are loving the scooters.

They're blurry because they're action shots. The spinning is great. ;)

His PT came on Thursday, but no castor cart. She found a great one, but when she was signing it out she discovered the tires were flat. We're going to get it on Tuesday when we go into the centre to get the stander fitted.

Two more fabulous Kingsley things! The first (which I figure if I say it enough I will go beyond jinxing myself ) is that Kingsley slept through the night last night FOR THE FIRST TIME!! *heaven* It was fantastic. He woke up a bit early for my liking (a half hour before my alarm), but I forgave him for that. ;) Since he's come home from the hospital his sleep has gotten better and better. Thank goodness! Rachel started sleeping through at 10 months and I think Cordelia was about 12-13 months (I know I was back at work), so I'm not exactly surprised by this, but it still has been a long 13 months - 17 really when you tack on those 4 sleepless nights of my pregnancy.

The second is also bed related. Kingsley has to sleep on his tummy right now.  I have to sort of barricade him with blankets so that he doesn't roll over. I tuck them along his side, under his armpits.  Three times I've come in the room to find him moved! He's usually pretty darn pleased with himself as well, like he knows he's done something cool. Today, he got up far enough that he was able to roll over. He has to be pretty quick about doing it as well since I hear him wake up and I'm in there within a couple of minutes.  I wish I could see him doing it to see how he's doing it. I've been trying desperately to recreate it on the carpet, but nothing entices him.

The purple pillow there and his giraffe are out of his reach usually and his armpits are level with the top of the folded blankets. 

That's it for my King. Things are good. I like it. Spring is coming. :)

Tuesday, February 15, 2011

One Step Forward...

Things are going well here. We're almost done our second week post op which means one more until all activities can return to normal. It hasn't been too bad, although I do feel cabin fever setting in.

Yesterday we had clinic and I think it was our best yet! ...although that's not saying a lot based on previous visits. ;)  Good nonetheless. We were there to see Ortho for the first time (I know. Yes. The first time. See comment re: clinic visits).  While there we ended up seeing just about everyone. It was a big Valentine's clinic party! There were a lot of other people there, which hasn't happened before. It's going to sound odd, but this was probably the first time I've been around older kids with SB since finding out about King's diagnosis. I wish I could have lingered.

First up was a quick visit with his NS nurse to look over his incision. It's freaking me out. I had a huge panic the day after we came home from the hospital thinking that it was leaking and swelling. I was almost in tears at the thought of having to go right back to the hospital. Add to that some cathing trouble and yeah, that was not a fun day! BUT thanks to technology, I just emailed a picture to his nurse and was reassured that things looked alright. It also looks odd because most of it is a previous scar that has been reopened and resewn. It's a bit bumpy. It's all normal though and healing well. Phew. One more week of keeping him on his tummy, airing out his back, and doing sponge baths. We checked in with our social worker and his continence nurse (assured her that things were all back to normal and working just fine!), then saw one of his PT's before the ortho resident and finally the ortho (everything is fine).

It was one of those rare visits where they asked questions (no one mentioned folic acid! Woo-hoo! ;)) and I was really excited to give the answers to them. I didn't leave there feeling heavy about the conversation we had.  They asked how his development was other than the obvious and every area was right where it should be.  His fine motor is going well, his interest in toys and playing is expanding, his eating is getting better and he's actually getting close to sleeping through the night (QUICK! Knock on wood!). He's also picking up language, which is awesome. He understands "clap your hands," "give me five," "hi/bye" (he waves), "no" (shakes his head), responds to his name, and is starting to sign 'more' and 'all done'. He's also pretty clear when he calls for MAMA versus just crying and yelling NO NIGH' NIGH'! when you head up the stairs with him. He's a genius. ;)

Mastering the sippy

What's up with his movement though, right? It's frustrating. I feel like the poor guy takes one (metaphorical) step forward, then gets forced to take two back. He could sit up on his own, then lost it. Then got it back, then lost it (and now has to wait to work on it again). He was starting to move on his tummy, then lost it. He was so strong on his stomach pre-decompression, and now it's an area of weakness, though the forced tummy-time has helped this past couple of weeks. His poor legs have been all over the place. Movement for the first six months or so, then lost, then regained at the hip so suddenly and remarkably, then lost.

One awesome thing about clinic was the hope they gave us. I feel like we've been getting mixed messages as far as what to expect from this surgery. It's pretty clear that no one expects he'll regain all of the functioning he had as an infant. I can accept that. We've been told that with the detethering the goal is to come out the way you came in (as in, no accidental slips and snips of the cord) and that any improvement is gravy. So far, he's got what he went in with just fine. He also has a much stronger medial hamstring on the right side - the kick we saw post-surgery has come back now that we're at home. Since hamstrings are lower down on the spine, it is still confusing that he's showing no sign of quads. HOPEFULLY once he gets a break from recovering and regressing and gets a bit of time to progress and build up the muscles that he does have, we'll see something happening. Yesterday we were told that we have months to see the results of the surgery, which is what I wanted to hear. I don't need a guarantee, I just want some optimism.

My funny Valentine's. Come on. You knew they'd have outfits, right? ;)

And looking forward, we have some cool things about to happen. I mean, where's the fun in moving slow, right? So, in the next week Kingsley will be getting 3 new pieces of equipment to test out. The first is coming tomorrow with his OT: a scooter board. There's been a lot of talk about them and the pros and cons lately and I've decided to give it a go with him. It's essentially a skateboard that he lies on and uses his arms to move. I'm hoping it will encourage him to explore and realize that moving is a cool thing to do.  Hopefully, it will also get him to rebuild up that upper body strength. If he doesn't hate it, that is. Then, Thursday his PT is going to see about bringing out a caster cart which he may be a bit young for, but will also give him another way to get around the house and explore his environment. I think the girls will love it. Lastly, next Tuesday he is (finally!) getting fitted in a standing frame, which is more or less some bars and velcro which will hold him in a standing position. We've postponed this twice because of surgery. It will engage his legs in ways they haven't been before and hopefully strengthen whatever muscles he is able to strengthen. This also opens a whole new world to him as far as being in a position he's never been in. The world looks different when you're upright!

Well, there you go. A very hesitant step forward with a dash of hope. And one ridiculously cute Valentine, no?

Sunday, February 13, 2011

Guest Blogger

Dear Blogging World,


 My Mommy keeps hiding the tissues from me. Please send me more very quickly. I need them.


 Oh, hi Mom. Is this your blog? I was just reading it. It's very good. Cute pictures.


Hey! More tissues! I love you, Mommy! 



Kingsley's new favourite past time is tearing up stuff, as you can see. He and Cordelia make quite the pair.

Saturday, February 12, 2011

Overwhelmed

I have said before that SB is such a small part of our lives. Something that just is, but that we don't often even think about.

That's not so true anymore.

Lately, it feels like my whole life revolves around those two words. Since November (or maybe September?) it is always there, the huge ugly beast that I can't escape. In January alone, Kingsley had 10 appointments. February had surgery, 7 days in the hospital and 6 appointments with a couple more to be booked. I am housebound more often than not since Kingsley is supposed to be horizontal as much as possible.  Every diaper change has become exhausting: watching his legs, holding his feet, checking his incision.  I HATE THINKING ABOUT IT. And we have months to go of waiting and watching and checking to see if things improve. Or get worse again. 

In between all of that fun stuff, I spend my time browsing houses on mls, trying to decide between buying and renovating versus custom building an accessible home for us.

And now SB is all over the news, with words like 'crippling' and 'suffering' and 'severely disabled'. 

It's absolutely crazy making.

I know that one day I will look back on this time the same way I do any rocky time. It will feel like a blip in the big picture. It will help us get to where we need to be. There will be calm and normal days again. There will be pajama days for reasons that don't involve airing out incisions and appointments that don't require $10.50 for parking.  I will get a babysitter so that I can do something fun.

Apparently, it's supposed to be above freezing tomorrow and the waist deep snow is going to start melting.

Spring is coming.

Maybe there will be tulips. ;)

Thursday, February 10, 2011

The Study

Bzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz...

Hear that? It's a community of SB folks all buzzing about the Big News.

It is big news, huge, collosal, big news. There was a study that came out that was nearly a decade in the works. It's been discussed and disected and speculated on, but now there is evidence, there are results, and there is print. http://www.nejm.org/doi/pdf/10.1056/NEJMoa1014379

The question was this: if damage to the spinal cord and development of Chiari and hydrocephalus all worsened throughout a pregnancy, what would happen if the back was closed while still in utero?  It sounds almost too far fetched to be real. I remember first reading about it and being just speechless. Dumbfounded. How could that even be possible? But it is. They slice the mom open, take out the uterus, cut it open, find the baby's back, do the closure, sew up the uterus, tuck it back in, sew up the mom and cross their fingers for the next few months.

I am in AWE of the doctors and nurses doing these surgeries, I am in awe of the 183 women who agreed to participate in the study.

We were not given the choice to participate. You have to be living in the United States and we aren't. Naturally though, we wondered about what we would choose if we did have the choice.  I have no idea. I'm inclined to think that we wouldn't, but that just seems like the easiest choice.

The results of the study, if you haven't heard, are that children who have the prenatal surgery are less likely to need a shunt for hydrocephalus and less likely to need supports to walk.  There are other details, but those are the take-home points. The surgery is not without it's own problems though. There is a very high risk of preterm labour and birth, as well as some complications for the mother (which I'm sure most moms would brush off at the opportunity to help their child). 

There is so much talk about the study today. So many regrets, so many What If's, so much reflection on and pride in what choices we did or did not make. I can't look back with regret and I don't really have any interest in wondering What If...  We (those of us with SB kids age 0-7ish) are a unique group in history. We will be the group that wonders. Before us, it wasn't even something to consider.  Our group didn't have any evidence that it would help and yet some took a huge leap of faith anyway. From now on, there will be more informed decision making. A new generation to come.

I guess that's why I'm so unsettled by the study. It brings up the uncomfortable feelings about the implications of prenatal diagnoses.  I keep hearing that it's a great thing for getting diagnosed prenatally - that maybe women will choose this over termination. I don't see it that way. If anything, it is now offering women three choices: terminate your pregnancy; drop your life for 4 months and move to one of the big cities and go through the surgery to give your baby the best chance; continue with your pregnancy and your life and deal with it when the baby is born, always wondering What If.  How realistic is it to think that any random woman who receives the diagnosis for their baby is going to be able to participate? I can't imagine having to leave work when I found out (wouldn't have qualified for EI then), leave my children, leave my husband, deal with the financial side of not working and not living at home, and go through that in Toronto even, and I have amazing supports! I feel like women may now think: Well I can't give them the best chance, so better to go with no chance. That makes me sad.

It's all moving in the right direction though, don't get me wrong. Part of me is sad that it's a huge research success that Kingsley will not benefit from. The other part of me recognizes that it can open the doors for so much more attention, research, and answers to all of this SB stuff. I remember googling and hesitantly asking both our neurosurgeon and OB if there was ANYTHING I could do for him - take more folic acid, go on bed rest, stand on my head, just throw me a bone! The feeling of helplessness is overwhelming, knowing that your baby is inside you possibly becoming more impacted by the diagnosis on a daily basis and there is nothing you can do about it. I am so happy that some women won't have to feel that way, that someone will be able to look at them and say yes, there is something you can do.

So, there. Those are my own rambly thoughts on the subject. This is Kingsley's Serious Face for the Serious Topic. ;)

Tuesday, February 8, 2011

Home Sweet Home

I LOVE being at home with all of my kids!! Oh, bliss. Well, near bliss.

The last few days have been long. Kingsley has not slept well in the hospital. He fights sleeping and loathes the crib like you would not believe. He misses the girls and cries a lot. Yesterday, we got a new roommate. She was a four year old who had her appendix removed. She would sleep a lot, then randomly wake up screaming. Usually just after I had gotten Kingsley to sleep. It was frustrating. He would get so excited when he heard her talking, then realize it wasn't Rachel and get sad again.


To keep him occupied (and quiet), we uncovered a wagon and did laps. Lots and lots of laps. Everyone on that floor knew Kingsley by the end of two days in the wagon.


The girls did come to visit again.


And then we did more laps.


His bandage was removed and I got a look at his scar for the first time. It is scary looking. It's a couple centimetres longer than it was before and a lot of the red skin that he had has been... I don't know actually! Sewn in maybe? It's not there anymore. Not as much anyway. It'll be a lot more subtle when it heals.


Today, after doing a few laps in the stroller, he got his discharge papers. Alleluia.


(notice his sleeper? thanks Kathy!! perfect for my rockstar)

Since we've been home, things have been up and down. It is hard to keep him lying down. There's not a lot he can play with. He's sick of his phone games, sick of the usual books, not interested in cartoons even! He's crying a lot. I can't wait until he can talk and just tell me what is going on. He's sleeping now, but refuses to stay on his tummy. He's figured out rolling again and flips over the second I leave him alone. He's not settling well. We went through this last time, where there was a few days of adjustment to being home again. My poor boy. The girls are very happy to have us home. Rachel decided that she was going to throw a party for us and decorated the whole playroom and I've promised Cordelia a morning of snuggling tomorrow, just the two of us while Rachel is at school and Kingsley naps. This hospital thing is just no fun for anyone.

Saturday, February 5, 2011

Healing

I still think this surgery (detethering) is far easier than the last (decompression).  Kingsley is doing fabulous. He is far more alert and 'himself' than he was 3 days post-op last time. I can't even begin to explain what an amazing boy he has been. He takes these huge events so well, as if it were just another day. As if it were normal to wake up and find yourself face down on a hospital crib unable to go anywhere, with a big bandage on your spine. That is my baby. He puts the Star in Rockstar.

Twenty-two hours after his surgery, he was moved from the PCCU (paediatric critical care unit) to the regular children's ward. I had mentioned after his decompression what a challenging time we had on the floor last time - packed ward rooms, lots of noise, lights, people, action. Poor Kingsley had such a hard time. Since then, a brand new wing of the hospital has opened up and all of the children have been moved. It is a DREAM on this floor! It's HUGE, absolutely monstrously huge. I love it. There's no more 'nursery' wing, it's all kids on one big floor. Because it is still cold/flu season, there are a lot of contagious kids and kids with more critical things than Kingsley right now, so he is in a semi-private room. His roommate is a 13 year old girl recovering from surgery for scoliosis. They are a strange pairing, but she's quiet and her family is lovely. It's been great.

We haven't seen a lot of movement in Kingsley's legs since the first day, but we are not discouraged. His spine has gone through a big ordeal and spinal shock is normal after this sort of surgery. I am very hopeful for what will happen once the swelling goes down and healing is complete. Anxious and impatient, of course. ;)

Thursday, Kingsley slept a lot. He was dopey and disoriented. He kept pushing up on his hands to look around and see what was going on. It freaked me out and I spent a lot of time trying to coax him into lying back down.

Friday, we started to get small smiles from him. Just little ones. He was still pretty quiet and sleepy.


He refuses to look to the right for the most part. He's always had this preference for looking to the left, since he was born really.  We had to work on it when he was a newborn, again after the decompression and it seems once again we will have to work on it when he gets home. For now, he looks to the left and as a result has a very puffy right eye. 


He misses his sisters. The first smile I got out of him was when I showed him a picture of Rachel. He just pats the pictures all day and then will hand them to me as if he's saying, "Hey Mom, bring me her, okay?"


Then his wish came true and the girls came for a visit! The GRIN on his face was unreal - ear to ear, he pushed right up and just kept reaching out to touch them with the most happy face you could imagine. It was priceless. The girls were equally pleased to see him and give him kisses and comfort him.  Lovefest all around.


Unfortunately, it is a bit hard to occupy a 12 month old who has to stay on his belly all day. My iPhone is the best thing ever. I can let him scroll through the pictures of the kids, watch videos of them, and play his favourite games. His top two, in case you were interested ;) are Peek a Boo Barn and Duck Duck Moose's Wheels on the Bus (we have it voiced over with Rachel singing and he recognizes her voice).


This morning, I was greeted with this:


All smiles and all for me! There's my little man. :) Today was fairly uneventful. His incision is clean, dry and healing well.  No leaking or problems at all. He is allowed to roll onto his side or back while awake, but still has to sleep and spend most of his time on his tummy. There's no word on when he'll be released.

One other fun thing about this hospital stay is that Kingsley keeps getting brought meals. I know this is going to sound odd, but I love hospital food, so I was pretty excited when the trays began arriving. It's nothing elaborate - mostly soup and jello and stuff, but since Kingsley doesn't actually eat any of that or drink ginger ale (really, who makes these menu's??), I've been getting a lot of regular snacks. Today, he was brought ice cream twice! Score! The second time, I thought I'd at least offer him some, expecting a refusal when low and behold - he loved it!


You're probably thinking 'love' is a bit of an overstatement based on those faces, but for Kinger voluntarily opening his mouth for anything is a big deal and he was all over this stuff. Maybe he is my kid after all ;)

Give Love

I am taking a break from King for a second (I'll update you on him later!) to tell you about a little boy that is pretty amazing and a couple families that are equally amazing. Back when I was busy with Kingsley having his decompression, my dear friend Joanna was discovering a little boy named Shea. Shea is an orphan in the Ukraine with spina bifida who was destined for a life in an institution if he did not get adopted very soon.  His adoption is not cheap and would require a family with a heart bigger than you can imagine. Things are all coming together, but now they need some help. Joanna wrote this today and I just wanted to keep spreading the love for her and for Shea...



Because it's February.

Because I just decorated my house in pink and red hearts.

Because Valentines are not just for couples...but friends, mommies, daddies, siblings, classmates and neighbors.
Because everybody needs love. And not the romantic comedy, butterflies in your stomach, plucking petals off daisies kind of love.
They need the "I'm yours forever" kind of love.

The "we can do this together" kind of love.


The "can't stop starring at you" kind of love.


The "I'm always there for you" kind of love.


The "I can't keep myself from smiling around you" kind of love.


The "I promise to make time to laugh with you" kind of love.


The "everything you say is so important to me" kind of love.


The " I couldn't be prouder of you in this moment" kind of love.


The love that lifts you up....


Squeezes you tight...

Makes even hard times feel alright..


The love that teaches you all that you need to know...


And gives you support you need to grow...


The undeniable you were made for me...


And together we make a family...


What's mine is yours...


I treasure each kiss...


And everyone deserves to feel like this...


Kind of Love.

Because real love is something that cannot be bought - only shared. We need it from the time we are born - and those of us who having loving families know that NOTHING could have replaced that. The love of family - the love I was given as a child - made me who I am today. It teaches us how to love the rest of our lives. It can never be truly expressed in the form of greeting cards, chocolates, flowers, or jewelry. Those sweet tokens and gestures give momentary happiness - it's the feeling love behind them that really means anything at all. So with that in mind, and in the spirit of this holiday of love - I would like to propose the perfect gift for your loved ones.

Give the gift of Love itself.

Give Love.

You can bring joy and love not only to those who hold your heart -

but to child who needs your help.

Give Love.

By helping one little boy come home to the family who is waiting to give him this kind of love. The kind of love every single one of these children pictured above are given every day.


The kind of love so many of us are blessed to have.

The kind of love he deserves.

Give Love.



Shea's story is a remarkable one - and it is only just beginning. For those who don't know - and didn't read about Shea in December - he has spina bifida and hydrocephalus, was born in an Eastern Eurpean contry and is put up for adoption. He is fast approaching the age of 4, where he will be put in a mental institution for the rest of his life. He now has a family ready for him - and Shea is WAITING to come home. His family is actively completing the adoption process - eager to give Shea the love, support and care only a family can give. The only thing we can do to help them bring Shea home as soon as possible is to GIVE.

Give what you have.

$5, $25, $50

It's not the size of the gift, but the size of the heart behind it.

GIVE LOVE.

It is so costly to adopt internationally - so much so that many people say "we can't afford that" or "it's just not possible for us". But this family has given everything they have not once, not twice, but 3 TIMES (read their blog - they are an amazing family)and is making that leap of faith to make Shea a part of their family - but they need help raising the last bits.

(And in adoption language, "bits" = $9,000!)

They need our HELP!

As a friend so honestly reminded me "Let's face it ... we all spend/waste $$$ on this every year. The chocolate is gone...the flowers die... and all you have is a distant memory of the token(s) you invested in."

How much more meaningful - how much more noble - how much more true to what love is all about - to give that money instead to this family - to this little boy - to bring him home - to give him Love.

So help share the love...with Shea. :)

Isn't that the most adorable Valentine ever?!

It's message is simple - it's purpose sincere.

Make a donation (even just $5!) in the name of a friend or loved one - to Shea's Adoption Grant (through the chipin on the right hand margin of the Saving Shea blog) or visit his family's blog and donate through their chipin (it all goes to his account.) Then print out these adorable Shea Valentines and give them to your sweetie, your sister, your mother, your friend - and see their faces light up at the sweet face on the card.


I can't think of a sweeter, kinder,

more beautiful way to Give Love.

Can you?

(visit http://www.savingshea.blogspot.com/ to read more about Shea's story as well as to view/print these Valentines.)


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