Thursday, December 30, 2010

Post-Op Head to Toe

Christmas Eve marked one month post op for Kingsley.  So much has changed in the last month! So much is different than it was three months ago and is light years from where it was just six weeks ago. But there is still so far to go. With every day that goes by, I find I'm still holding my breath, waiting, praying that we see more changes.  I feel like that clock is still ticking, counting down to some invented deadline of March 1 when everything that is going to happen will have happened and anything that hasn't returned is lost forever.

Where he is now though, is pretty amazing. My little rockstar has been showing off the past month.

Starting at the top: his shunt is doing fine. No problems to date. We are closing in on his one year shunt-iversary - less than a month to go. That's a big milestone. His hair has grown a lot lately. I'm tempted to get it cut.  It will no longer go into a cute faux-hawk, so I've been settling for the classic church boy (or Senator Kingsley, for my sister), which makes me laugh. It's starting to grow back over his new scar, which is also continuing to heal nicely, or so I'm told. I don't have a lot of experiences with scars. His still seems angry red and huge to me, but what do I know. Soon, half of it will be covered by hair and it won't be so obvious. I feel like I'm hyper-aware of it when I'm out in public with him. I don't want freak-show stares and I don't want sympathy stares. I realize he has a lifetime of awkward stares coming at him and this is probably a really stupid and futile thing to be wishing for. So... there.

More head stuff... He had his third tooth pop through this morning! Top right.  He's congested, but otherwise is taking it in stride. I have really good teethers! He is also chatting so much, which I can't get enough of. His little voice is adorable! He says buh buh buh buh bah bah all day long.  In the past week he's added in puh, pa, and now MAMA! I think he means it, too, not just random mamamamama babbling. He does it when he's mad or when he's upset about something. He'll look around and sort of half-whine, half-yell it until he sees me and then it's all yell until I come rescue him. That's my boy. ;)

One more head thing. I have read about kids with SB having reactions to loud or sudden sounds. I can't recall if it was attributed to the shunt or the Chiari, but I've noticed Kingsley definitely has this problem. He hates when I use the handheld mixer on any level above one - instant screaming. The vacuum is also feared. The Magic Bullet is a nightmare to use when he's anywhere in ear shot. Christmas has produced quite a number of toys that seem to be on the same decibel. He got this cool car race track thing from Grandma that sends him into hysterics. The girls are in love with it, unfortunately.
 (one of the scary toys is in the background. you drop a ball down and it makes a noise on each level. evil)

An exciting development for me is that Kingsley is beginning to eat more. Yay! He eats three meals a day, about 1/2 jar or 2-3 cubes for breakfast and lunch, a full jar or 4-5 cubes for dinner. He doesn't always eat it all, but he is getting there.  He's currently into the meat/veg combos and not really interested in anything fruity or sweet. Definitely Jeff's kid.  I've also caught him putting something in his mouth three times in the past week. That seems like nothing, but for a kid who gags on his own fingers, this is a big deal. He opens his mouth when you put things in front of him.  Whatever you put in there, he will automatically spit out, though. Baby steps.
("You want me to do what with this cookie thing?" he didn't eat it)

Kingsley used to rock at tummy time. He would push up into a baby upward dog, pre-surgery. He could roll from his tummy to his back going left and right. He could do Superman's with his arms out, his chest up. He was just on the brink of army crawling. Since his surgery, this has been the biggest area of regression. It has bothered me a lot that he lost this area of strength, although it's for obvious reasons. I'm sure it didn't feel good, considering where his incision was. He's regaining the strength quickly now. He gets up on his elbows and tolerates being on his tummy without too much complaint. He tends to lie sort of sideways with his head down, then push up for a bit, then lay back down for a break. He is able to roll tummy to back again.
(down, up, down, up, down... this is as high up as he goes now)

The B and B stuff (bowels and bladder) are just fine. Nothing exciting going on there, which is just the way we like it. His urodynamic study in mid-November was fantastic.

So, moving along down the line we are at the big stuff.  Looking back now, I'm able to think more objectively about what he was actually able to do by the time we got him in for surgery. The truth is - he couldn't do much. His PT had told me in September that he was functioning at L1, but I would be surprised if he was doing even that well by mid November. He rarely moved his legs at all. They mostly just were there, still.  If they moved, I would get excited. It was a rare event. He also was losing some strength through his torso. He slumped in the highchair and couldn't hold himself up in the Bumbo very well. I had to put extra padding in his booster seat for when he played on the tray. When I would hold him, he'd snuggle into me, which I thought was sweet. But, now I realize it's because he wasn't able to hold himself up. Bittersweet.

Where is he now? Well. Realistically, probably still around L1/L2. But, so much stronger. He holds himself up beautifully. He has come further in the past 3 weeks toward sitting independently than he was even in the summer. It's so close. Maybe it'll be his birthday present to himself. :)  He moves his legs a lot, I've mentioned that previously. He is just always moving them. They move from the hip, if you can imagine that? He tucks them up when he's on his back. When he's on his tummy, you can see them starting to pull up under him a bit. He uses them to push himself over, which he didn't before - previously it was all upper body and arching his back. A bit more strength there and he'll be able to flip from back to front. He hasn't shown quad functioning to his PT or my mom yet (I have no clue), but he has medial hamstrings (still, no clue). I can feel things working in his upper legs. If I hold his legs down straight when he's lying on his back, I can feel resistance.  When I push against his feet, I feel resistance. I have so much hope for the next few weeks and months. I'm so anxious for more.

We have a lot more help lined up for the new year. Just before Christmas, we met with the PT from our SB clinic and she is setting up regular PT for him, in addition to his visits with his Parent Infant Therapist (who is an OT).  They'll come out to our house, which is wonderful.  He also has a post-op appointment with neurosurgery next week and clinic with the developmental paediatrician on the 10th. I have to remember to call and book his one year check up with his paediatrician. In February, he will see ortho for some baseline assessments, and then in early spring we start rounds all over again with neuro, uro, and dev paed. That's also when he'll go for the follow up MRI to show what surgery has done.

He was supposed to be measured for a standing frame in late November, but surgery has postponed that. I'm excited to get him standing. I'm trying very hard to look past the accessories that are coming and just focus on where it's going to take him.

 I think that's it! Now, I have a birthday party to start planning, don't I? I can't believe my baby is almost one year old. It's so silly, I swear I wasn't this emotional when the girls turned one. Maybe it's because he's (probably, likely, maybe??) my last baby. Oh, my sweet little boy.

Wednesday, December 29, 2010

So, This is Christmas...

Have I mentioned that I love Christmas? ;)  It's not just the day (although that is fun as well), but the whole season - the build up, the preparation, the journey. It's just awesome. It's not quite over. There is still the rest of this lull week where you incorporate all of your new things into your old life and do a lot of cleaning, purging, and casual gatherings to catch up on how everyone's Holiday was, so much eating to be done while the calories don't count and you can just say, "Diet starts next week!" and actually mean it. Then comes New Years Eve and some old boring party (that is not my favourite part)... and then it's all over and life begins again, fresh and new with a new year.

I can't believe how much has happened in a year. Where we were a year ago is so far and away different from where we are now, I never could have imagined it even if I tried. Last year, we were holding our breath. Waiting to go to war. Saying good-bye to our old life, knowing that the new year would bring changes that we would never come back from.

And now, here we are. Just over two weeks until Kingsley's first birthday, nearing the end of a fabulous Christmas season. Our house is so FULL (and not just because of all of the new toys). The kids are so happy, Kingsley is doing well, and the new year doesn't hold dread.

So. Here is our Christmas photo recap. ;)

 Snuggles together on jammie days
 All dolled up for Christmas Eve mass
 Some of my many, many attempts at getting a decent shot of the three of them
 Some of our attempts at getting a good family shot
 More attempts at getting a good shot of the three of them in their Christmas jammies. Right after the last photo was taken, we told Rachel that we thought Santa was going to be here soon and she nearly tossed poor Kingsley off her lap. She knows Santa does not come if you are not asleep in bed and did not want to risk that happening!
 Christmas morning. Amazing that they needed some encouragement to get up!
Santa brought plasma cars for the kids! The girls were so excited. I'm sure Kingsley will be excited about his one day. ;) In the meantime, it's a spare for when friends come to play.
 All dolled up at Grandma's house.

 No, Santa did not bring Rachel an iPhone for Christmas... he brought me one! :) However, Rachel has claimed it as her own. I am amazed at how easily these kids pick up on technology. It's baffling. Both her and Cordelia can turn my phone on, scroll through the apps, find their games and play. Unreal. Cordelia got a Leaptop from Grandma. She will periodically announce: "Need to check my emails!" and run off to do that. Hilarious!
More attempts at family photos at my families' Christmas yesterday.

I'm sad to see the Holidays ending, as usual. It's been awesome having Jeff off work for reasons that don't involve a hospital stay. I love getting everyone all dressed up and then having random pj days where you sit inside and snuggle with new toys and movies. Any excuse to do random baking is always welcome. Christmas music, Christmas movies! I'm going to try and hang onto the warm fuzzies for a few more days. Rachel keeps asking when we're going to take down the tree, which makes me wonder whose kid she really is. ;) I feel like we just put it up! I want to snuggle in the warm Christmas blankets a bit more. We can make the beds fresh next week.

Tuesday, December 21, 2010

Nom Nom: An Ode to Breastfeeding

I'm not sure if I've mentioned before, but Kingsley does not eat. We started feeding him solid food at 6 months old and it has been a 5 month battle. He has a very sensitive gag reflex. We've had his OT watch him eating, he's had a modified barium swallow (x-rays while he eats to see how the food is going down - checks for aspirating and stuff). He CAN eat, he just doesn't. Anything more than a puree and he gags. If he gags enough, he'll throw up. It's lots of fun.

He goes through spurts where he'll eat more, then he'll slow down. Right now he barely ate more than a couple spoonfuls each meal for the last three days, then tonight ate an entire jar in one sitting. It's so frustrating. I assume his lousy sleeping is related to his lousy eating. He doesn't eat enough throughout the day to keep him full, so he's up all night. It also impacts his other business, since he gets his PEG in his food and if he's not eating food, he's not getting his PEG. Although, if he's not eating food, he doesn't need the PEG so much, so there's that silver lining.

The girls were nothing like this. Rachel was fully on to table food by about 10 months and Cordelia refused pureed food for the most part until I gave up and fed her table food at 8 months. Both could be entertained by tossing a handful of Cheerios on a tray or letting them munch on a mesh feeder full of fruit. Not Kingsley.  Another difference between him and the girls: you'll note above I said he ate an entire jar. Here's where I hang my head in shame and admit that I have given up on making him food. I've got the basics in the freezer still: apples, pears, squash, sweet potatoes, but it was so boring and nothing is in season or local anymore and frankly, I'm sick of making baby food. I know it's not really a big deal to buy baby food, but whatever. It just feels weird. I also wanted to see if adding protein helped with his sleeping and I refuse to make pureed meats (I tried it with Rachel and didn't eat meat for a month afterward. So gross.).  It hasn't helped.

It goes further than just food as well - he doesn't mouth toys, he doesn't take a soother, won't take a bottle. Anything you try and put in his mouth, he will gag on.

So, here's where you're wondering how this is an Ode to Breastfeeding. Well, that's one thing Kingsley does like. Love. Adore. Inhale. He nurses like a newborn still. Every few hours, around the clock. The kid can't get enough. His lips clamp shut at the sight of a spoon, but he sees me coming and his jaw drops open like an opera singer.

People are funny about breastfeeding, especially after about 9 months, in my experience. It's like it's okay to do up until 6 months and they'll let it slide a bit longer than that. From 9-12 months you'll get looks, but that's it. After a year you have officially crossed over into being one of Those Moms. The word 'extended' gets tossed around, people ask when you're going to wean or look shocked when you mention that you haven't yet. I don't give myself a deadline or an expiration date. I won't even commit to baby-led vs mama-forced weaning.  Right now, it's what he needs and what I can do for him.

I do love it though. It's the most simple thing and it just works so well. He doesn't like bottles? No problem, I don't like dishes ;) It makes our occasional co-sleeping much easier. Even though I am bed hopping all night, at least I get to lie down in both beds and close my eyes. In the hospital, it let me hold him much earlier and longer post-op. I love being able to soothe him and calm him and know that even if he refuses food for another 6 months, he'll still be just fine. Oh, at least some thing is going right ;)

(I'm so tired here)

Kingsley being my third child as well, I've realized how quickly time moves by. You blink and suddenly your new baby is a toddler. Blink again and they're off to school without a backward glance. So, while there are many nights that I curse the fact that I am (nearly) his sole source of nutrition and comfort and days where I long to leave the house for a 90 minute yoga class downtown, I know that in three blinks he'll be telling me not to hug him in public and to drop him off at the corner so his friends don't see me and I'll wish for this time when I was all he wanted and needed. In the non-creepy way, I mean. 

Monday, December 20, 2010

Ho Ho Ho

I love Christmas. Love it. Love love love love love love love it. Everything about it! It does not stress me out. I do not feel that dread or pressure that I hear people talk about.  I just love it. Not just the day, but the whole season with the love and warmth that seems to permeate everything. I know Kingsley was only in the hospital for nine days, but somehow that week and a half seemed to have swiped away a lot of our Christmas build up and now it's just snuck up on me. We have so much to do before the big day! So much fun, so little time... ;)

Fortunately, my kids seem to feel the same way. I am absolutely exhausted every night from all of the activity we've been experiencing through the days. From work parties to shopping to toy drives to crafts and baking, we're milking this Holiday for all it's worth. Rachel is at the best age ever. She's fully absorbed in the fantasy aspect of the Holiday. She eats it up and believes in the spirit of Christmas like you can't imagine. She's also grasping the real meaning of the day as well, understanding the birth of Christ more than last year. Her enthusiasm and excitement is so contagious. Cordelia is picking up on it, but doesn't quite get it yet. Kingsley has no idea what is going on, nor does he seem to care. He's just happy.

So, here's the unedited highlight of our Holiday since Kingsley's been home...

Rachel had her JK Christmas concert. It was the JK/SK classes combined singing along with three Christmas songs. Very cute. She was a star, as she's telling me here.  

We wrote letters to Santa.

I ask: What do you want to write to Santa? and then write down whatever they say. Then they get to decorate the letter. This was Kingsley's letter. I think Santa speaks baby, doesn't he?

Working on fine motor stuff - I realized he doesn't have the pincer grasp down yet, but mostly due to lack of practice. Since he doesn't have any interest in food, he hasn't had any need to pick up little things. Mini marshmallows are squishy and fun. And before you gasp in horror at the thought of him choking, you can relax. The chances of King actually putting something in his mouth are pretty much nil, much to my dismay.

Our city's fourth snow day in less than two weeks prompted a pajama day. We buried ourselves in blanket forts and were very cozy. I love that Kingsley provides me with a solid excuse for not playing in the snow - that's the one Holiday-ish thing that I leave for Jeff if possible. 

He's still working on getting his strength back up. Reading books is exhausting. 

OK, perhaps another gasp of horror if you live in Canada. I know, these bath ring things are contraband material in these parts, but look how happy he is! I had been on the hunt for a solution to our bathtime dilemma - how can I bathe all three at once when Kingsley is lying in the tub? Voila! Sit him up. And I needed something relatively small to sit him in with the other two squirmy girls in there so I tracked down one of these evil things. He LOVES this! It's a whole new sensory experience for him. I promise, I'm being very careful.

They love it, too! (Cordelia doesn't have a shiner - that's just marker)

First picture with Santa!! Note the uncertain expression on his face and the way his arms are ready to be picked up and rescued. Seems, Kingsley and Cordelia were not thrilled with Santa. This was the only way we could get Cordelia in the picture at all. My coordinating outfits were wasted. Rachel was in her glory though. She sat with Santa and chatted for quite a while.  

And lastly, yes. That is me standing with Mr. Big. Remember that Teacup place I'm always blathering on about? His wife and sister-in-law own it (they're from Windsor and have one there as well) and they did a big Lova Tea launch and my friend Leslie (the blonde there) got us invited! Very swanky! I confess - I half wanted to yell at him for jilting Carrie, which I am still not over. It was weird seeing him in real life, just standing there chatting away. 

That's it, that's all! This week we have to get on with the Holiday baking, wrap all the gifts, fit in a couple play dates, a couple therapy sessions, do a wee bit more shopping, a couple parties, and then have some good ol' fashioned family time. Jeff's brother is coming home for the first time since last October, so I'm looking forward to introducing Kingsley to his uncle finally! Can we make December go on for another month?? :)

Monday, December 13, 2010

Work, Work, Work

It seems I am incapable of beginning a maternity leave without drama. My last week before going off for Rachel, my grandmother passed away and I ended up off early.  At 34 weeks pregnant with Cordelia, someone went through a red light and hit my car, narrowly missing the drivers side door. I (and Cordie) was fine, but I faded out of work early after that. Then, one month before Kingsley was born, at 34 weeks again, I stood up from a meeting and discovered things were happening that should not have been happening. One very looooong ambulance ride later, I was off on an early mat leave once again.

Which means, if you do the math, I am coming up to the end of this mat leave. Two more lowly days left. However, after a lot of deliberating and discussion, I've decided I'm not going back to work, yet. I'm taking another year leave of absence.

I love my job, I really do. I love my clients, I love their parents, I love never knowing exactly what the day is going to present to you, I love that the field is always, always, always changing, and most of all, I love working with the people I work with (and I'm not just saying that because I found out you're all cyberstalking me!).  There are days when I really miss working.  My brain feels rusty and mushy when I'm at home.

But, work is not where I need to be right now. Kingsley has another year of the home therapy and especially in light of what has happened this past month I think for sure he needs me at home right now.  So do the girls really. Cordelia will be starting preschool in January, Rachel will be going back into dance classes, Cordelia will be going into dance or gymnastics and that is a lot of driving around!
(we gave their Christmas jammies a test run. Cordelia refused to be in the picture)

I have never imagined myself being a stay at home mom. I fantasized about it, of course, but mostly on days where I was exhausted and overworked. Monday mornings, especially. I'm comfortable at home though and I think I've enjoyed this mat leave more than the first two. Perhaps it's because I haven't been counting down to the end or because I just have more children to entertain me. Either way, it's lovely.

Tomorrow morning is Rachel's JK Christmas sing-a-long. I don't have to take the day off. I'll be there ;)

Friday, December 10, 2010


We were told that it might take up to three or four months to really see what sort of a change the big surgery would have with regard to Kingsley's leg functioning.  I imagined a very long winter spent hovering over Kingsley's legs watching every flinch and twitch, praying with every breath that I would see a change.  I feel like that was pretty much how I was in the hospital there, holding his legs with both hands, waiting for any sign of pressure against them.

But since we've been home, the hovering and holding on hasn't been necessary at all. You can SEE the movement. All. Day. Long.  

Each diaper change is getting more and more ridiculous as I find myself sitting there blinded by tears and a huge, dopey grin.  One of the things I remembered was that I used to have to hold Kingsley's legs while cath'ing him so that he wouldn't get them in the way. I don't remember when it happened, but at some point I stopped having to do that. Instead, I was propping the bottle (that I drained the cath into) behind his knee and walking away to get a diaper, a change of clothes, get Cordelia out of trouble or some other thing that needed my attention. The bottle never went anywhere because he just wasn't moving his legs.  Since we've been home from the hospital, he's knocked the bottle over three times and soaked himself. Now I hold the bottle. 

In my head, I've been knocking off the months, working backward. I've been watching like a hawk, trying to remember what I've learnt about what muscles do what action. His trunk is also more solid again, I'm almost certain. That was something that was getting weak in October and November, just before surgery. Definitely, lifting his legs from the hip doing a frog kick sort of thing. That's good, that's what he had in September, I know for sure. The frequency of movement has increased more than I can really explain. He just moves his legs all the time, where before surgery we would only see him move them once or twice a day if we watched closely.  I barely remember seeing him ever move this much.  

Here's where I love this blog and the way things get chronicled because I've been obsessively watching the video in this post:  since September. He wasn't doing this in September. In fact,  I think this was pretty much the last time I got any good movement from him on camera.  I took the video June 2, 2010 and I remember feeling slightly fraud-ish even posting it because he so rarely showed that much movement at all when I posted it; it felt like a misrepresentation of his abilities in early July. Today, when I was changing his diaper just before lunch, he was almost there. He was doing almost those exact movements on the left side and some of them on the right. I just watched in disbelief as he bent his knee and pulled his leg up, over and over. I could have sworn he also straightened his leg back out a couple of times. 

I feel like it's so surreal. I need someone else to see this movement and verify that YES he really is moving his legs again and that there might actually be quads and hams moving and working. It feels too good to be true! To see this so soon is like a miracle. I just can't wrap my head around it. LOL! I feel that way about everything relating to Kingsley lately! If he's come this far in just two weeks, imagine how far he could go. Can you even imagine?

He also got his stitches out on Wednesday, which means he's gone from this:

 to this:
and it actually looks even better than that now. More stuff I can't wrap my head around. I'm amazed at how he heals. It's both shudder-inducing and awe-inspiring to look at his scar right now.

Wednesday, December 8, 2010


Things are going okay since we got home. I thought (naively) that Kingsley would be all ready to jump back into a routine once he got home, but that didn't happen so much. His sleep has been all over the place, he cries inconsolably, he doesn't look to the right, he has pretty bad separation anxiety and he hates everyone except the four of us... but other than that, he is WONDERFUL. He's so happy to be home, he's healing well, he's waving and blowing kisses and clapping and his eyes have their sparkle back. Our house feels full again.

It's been a great week to be stuck at home recovering. Sunday night it started snowing and it hasn't stopped. I think they're reporting about 110cm or so. The city has been shut down for two days and tomorrow everything is cancelled again. No school, no university or college, no buses, no shopping. Even if we had wanted to go out, our street wasn't plowed for two days and we couldn't! I have not minded being homebound at all. We've been baking, watching Christmas movies, doing crafts, and drinking lots of hot chocolate. I love this time of year.

 it's a hot chocolate mustache 
 back yard and front yard - Day 1 of the snow
 back yard and front yard - Day 2 of the snow

 more crafts
 loving the snow
 staying inside and snuggling with Nana (but notice that he has to be facing me)
reading stories with his girls (Rachel's new thing is hamming for the camera)

Sunday, December 5, 2010

Kingsley's Decompression with Music

"... and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived."
  ~ Little Bee, Chris Cleave

I make videos for everything. This is Kingsley's 9 days in the hospital. One more battle scar.

Friday, December 3, 2010


We're HOME!!!

So so so so happy to be home again! I was so excited to run out of there, I didn't even get a picture of Kingsley until we were in the van. So unlike me ;)

We surprised the girls and the three of them were giggling and smiling and cuddling for ages after we were all home together. Now the two little ones are napping and I'm so happy.  It feels so good to have all my angels home with me.


Kingsley is doing fabulous. And horrible. It has been the longest three days ever! Ughhhhh...

Kingsley himself is amazing. His head/neck is healing really well. No leaking at all, the bandages are off completely. He is also off morphine and just getting by on Tylenol and Advil. He amazes me with his resiliance. Not only is he working hard at recovering, but he is also busy woo-ing the nurses with his adorable smiles and his new tricks - waving and blowing kisses. Could he be any cuter?

The down side of all of this is that when Kingsley is not on medication, he's pretty much himself. Himself being a 10.5 month old baby who is stuck in a room with 3 other babies adjoining a room with 4 babies. With all those babies comes nurses, lights, crying, beeping monitors, parents, doctors, and a million other random things that are preventing him from sleeping. The last two days he cried for 7 or more hours. It has been horrible. HORRIBLE. I was almost very impolite to a nurse at about midnight last night. Instead, I had to walk out and leave my crying baby and then have nightmares about him ripping out the IV in his neck. Which, it turns out, he almost did. They had to remove it this morning because it was all bloody. My poor boy.

So, tonight when we were cruising into nightmare number three, Jeff and I kicked up a fuss. By some amazing coincidence one of the babies occupying one of the private room (we were told they were all there because they all were contagious) was suddenly deemed not contagious and moved into a ward room so King could have that one. He was sound asleep in less than 10 minutes.

I hate being That Mother. It was terrible and so frustrating, but I was ready to walk out with Kingsley if they didn't do SOMETHING that would allow him to rest.  We actually did ask if we could discharge him, but neuro said no. I suppose we could've taken him against their approval, but I'm really glad it didn't come to that. I just couldn't see how you could heal from neurosurgery when you are crying for hours and hours and hours and getting no sleep. Fortunately, the ward moves to a new part of the hospital with all private rooms in two weeks and the next time he's in the hospital we won't have to go through this.

The nurses have been horrified that the only pj's that fit him are pink stripes.  They discourage you from bringing your own clothes or blankets because they'll get tossed into the hospital laundry and they just don't have a lot of larger 'boy' sleepers, so he's been wearing the standard hospital stripes, which in his size are pink (they keep bringing him the yellow ones like above, but they're HUGE on him). I don't think he cares. He has been called 'she' a lot.  Tomorrow, I'm bringing clothes to him. I am praying that he will get to wear them home. I'm ready to bring him home and he's ready to come home. Cross those fingers.
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