Saturday, July 8, 2017

a rose by any other name...

a couple of days ago we went to a new doctor...we've had a pleasant break where we havent had to see too many doctors, but we've decided to tackle dom's spasticity in his upper extremities since his legs seem to be relatively good to go after surgery last year.

so we went to a new doctor and started talking to them about dom's diagnosis, his personality and so on.

one of our great mysteries with dominic is his speech regression. when he was about 18 months old he had a decent number of words. he could sing along to songs...and his therapists even wanted us to start working on multiple word sentences with him. then somehow within 6-8 months those words just disappeared. we have no idea what happened.

we've explored every possibility including apraxia of speech, side affects from medication and so on. one thing we did talk to our doctors about was the possibility of dom being on the autism spectrum given some of his other symptoms, but at the time our doctor said that he didnt think that was an issue for us, so we kind of forgot about it.

but in talking to this new doctor the topic of autism came up. and here's the kicker...we never really know what is and what isnt related to dom's CP. it might not be autism...it could be pervasive development disorder. buuuuut, when you add up all of the symptoms: lack of eye contact, on and off again social issues, the occasional inconsolable meltdown, the incidents of self injury when he gets frustrated....all of that kind of paints a picture that looks like autism.

so this is a good news bad news situation. the bad news is that we have to recalibrate our expectations. we thought he'd grow out of some of these behaviors, and that might not be the truth. the good news here is that we've got another label by which to describe him to people that dont know him. in the grand scheme of things isnt that what a diagnosis is? a descriptor/common language so that everyone can get on the same page about stuff?

so it sounds strange, but im oddly grateful to attach a name and a diagnosis to some of the things that have perplexed us about dom. being dom's dad has been a constant process of getting to know him. there's still so much in that head of his that i dont know, and in some sense it feels like we took a step forward with this. he's on the autism spectrum. good deal. what layer of the onion are we going to pull back next gommy goo?

and like the title said...a rose by any other name is still a rose. doesnt matter what a prescription pad or a doctors report says, he's still my dommy...and now we've got language to describe him and his need a little better than we did before...in ways that he cant do so for himself.

im grateful for that.

Thursday, October 6, 2016

New Beginnings

The Singhs are officially moving.

Well some of us already have moved.

How about I start from the beginning.

D and I have long talked about moving to be closer to her family. We've always wanted our kids to grow up with their cousins and to be around for regular family events instead of having to drive into Austin on a weekly basis.

This past summer we also realized that we needed help. Between traveling for surgeries and managing therapies, new schools, doctors appointments etc...we came to the conclusion that being here in College Station wasn't sustainable long term, and we decided that over the next year or so we'd start making steps to move to the Austin area.

Well shortly after making that decision, a fantastic opportunity presented itself for Danielle...she applied to be the City Engineer of Hutto (a great promotion for her) and within the course of three weeks she had applied, interviewed, and been selected for the position. She started the position last week.

So that kind of accelerated my job search process...but fortunately enough I came upon a wonderful opportunity at A&M-Central Texas as the Director of Access and Inclusion. And within that same kind of three week phase I interviewed and was offered the position.

So shortly thereafter we started the process of packing up. We wanted to get the kids in school ASAP so that they could adjust to their new routine, so as I type this D and the kids are already in Jarrell (D's parents have been super gracious to let us live with them until our house sells) in school and everything. Vincent is in a great private school (same private school that D, her sisters, her mom, and grandfather went to), Gommy is in an all day (!!!! no more child care worries!!!!) PPCD classroom and diya is in a great little daycare close to her mom's work.

I start my position on November 2 and my last day at Texas A&M College Station will be October 28.

D and I have spent the majority of our adult lives in College Station. We met in this town (at La Bodega which sadly no longer exists) Our three children were born in this town. I came to A&M as a 24 year old kid with a full head of hair...and 12 years later here we are.

By no means is this easy. We're not even 100% in Austin and we are already missing College Station...the people, our jobs...everything. We know that this move is the right one....and one that is the best for our family, but that doesn't mean that it's at all easy. But over the course of the month I keep thinking about something that I've heard attributed to Winnie the Pooh (and then later found out that Pooh didn't actually say it but just go with me here)...



That's the lens that we choose to use to look at this. D and I have been so blessed to have spent the past 10+ years in this town working with and being friends with some of the most caring and loving people that we will ever meet. For me personally, I may have been raised in Houston, but I grew up in College Station.

This town has been really good to us. And we're sad to leave. But we are leaving with confidence knowing that we are doing the right thing by our family. And that, to us, is the single most important factor in any decision that we will ever make.

So Gig'Em and God Bless, Aggieland. The Singhs will forever be grateful to you.

Friday, July 8, 2016

the glue

when gommy and vincent were little, they were best friends. they'd wrestle, cuddle...all sorts of stuff. vincent never had any issue making gommy laugh.

over time that relationship changed a bit. gommy became a little more serious and a little less enchanted by brothers jokes. and vincent got more interested in big boy toys, etc. if you ask vincent who his best friend is, he'll still say gommy...but things changed.

but what we've realized lately is that didi pants is the glue of our family and the glue of those brothers. somehow, now more than ever, i find all three in the same place...whether that's in the living room or randomly hanging out together on the treadmill. in a strange and beautiful way this little girl has brought balance to the force of her brothers


and what's great about it is that she's got the most beautiful relationship with the both of them. vincent adores her. would do anything to make her laugh. wants to cuddle and wrestle and throw pillows on her and she just laughs and goes a long with whatever he does. if he's running around the house she's on all fours with a smile on her face trying to keep up. he can do no wrong in her eyes.


and for gommy...she's the only person in our house that knows gommy just as he is. vincent has seen gommy as a baby with limitless potential...then as a toddler who didnt quite toddle and doesnt talk (at least not in the traditional sense). d and i see gommy not only for who he is, but for who he tries to be...we see present and future, ability and dreams. but diya couldnt care less about any of that. she knows gommy as gommy. she doesnt care about what he could be or what he will be. she knows him only as he is. it's the purest thing i've ever seen. 

we often treat gommy with kid gloves. if he's fussy we try and console him, if he's getting frustrated we go through a complex thought process of trying to balance out enabling vs helping. not didi though. if gommy has something she wants, she'll pull his hair to get it. if gommy is fussy, she doesnt care...she'll still climb all over him and bother him and then cuddle up to him. why? because no matter what he's her brother and he is who he is. this is her beautiful normal and there's no other expectations. 


i dont know if i'm explaining this well because it's even hard for me to understand. i guess the best way to phrase it is that the love diya has for her brothers is unconditional and pure. she's 8 months old and has already taught us so much about what true love means. 

who would have thought that the newest member of the singh crew would turn out to be the glue. 

Wednesday, June 8, 2016

milestones

we have an odd relationship with milestones.

right now didi pants (the littlest one) is all over the place. not quite crawling on all fours, but army crawling to get where ever she wants to go. but the big thing the is that she can push herself up to sit. like all by herself. we didnt need to teach her that or anything. she just kind of picked it up on her own.

and i mean that's a typical milestone for a kid of her age, but i cant help but think back on how hard we worked on that with dominic. for darn near a year we worked with him on where to put his hands, how to move his legs, and how to coordinate everything to sit up....until one day he just did it and we celebrated big time.

these moments are fantastic for both didi and dommy because 1) didi doing that and learning that on her own is just mind boggling. you never realize how complex movements are and how much coordination goes into them until you struggle with them...and it's super exciting to see didi just fly through them with no issues. but then, in a sense, dommy's brain is speaking french and his body only understands japanese yet somehow he was able to coordinate those and make things happen. i'm so proud of both of them.

d and i dont really spend much time thinking of what dom isnt doing as compared to his peers. we know things are delayed, and we're fine with it. when dom is in our house he's not disabled or developmentally delayed...he's just dom.

but occasionally we are forced into those comparisons. yesterday we got reports back from OT and speech evaluations...which kind of knocked us on our ass. seeing words like "cognitively delayed" and "non ambulatory" and "other reduction/deformities of brain"...those are hard. really hard. we're not in denial. we look at the rate at which diya is developing and can see a stark difference in how gommy's developing. we know. but it's just hard to see it in writing.

best comparison: i can look in the mirror and think "hey i'm looking kind of fat" and just sigh and move on. but if someone else says "dude you're looking kind of fat" that's devastating. not information i dont know or havent thought about but come on man, dont just say it.

it's these quiet moments that bring the tears on. it's these quiet moments that we sit and talk about whether the future we want for dommy is possible. it's these quiet moments that we just wonder what's next.

and then we kind of move on because we have to. because dwelling in the future (or the past) requires more emotional energy than we're able to muster up.

yesterday reminded me of how hard all of this is. we're on an uncertain journey guided only by the strength of our family and the tenacity of our son.

there are so many good days. but then there are bad days. and sometimes it's ok to admit that.


Thursday, April 28, 2016

6 weeks post-op!

the 6 week mark is kind of a big milestone for SDR patients. it's basically when we can officially get back to "normal" as far as every day operations go. prior to this point we werent supposed to be lifting him under the arms, no using an e-stim unit, no hippotherapy...basically still handling him with kid gloves. but now that 6 weeks have passed we can officially say that dom has healed from his surgery. so here are a few quick updates:

taking good steps!

we're making really good progress. therapy nowadays consists of about half an hour of work getting from his knees to a standing position, or maybe stretching or sitting...and a half an hour of walking down the hallways at st. joe's. he's taking some really really pretty steps--things that he wasnt doing prior to the surgery. now that the spasticity is almost completely gone we're realizing a couple of things 1) his right leg is a more affected than his left (which is weird because his left arm is more affected than his right) and 2) his quads are still trying to get strong enough to walk consistently. our PT said the other day that she could feel his muscles trying to get moving and trying to figure out how to fire to make the leg move--it's a somewhat new sensation for him. lefty is doing really well...with almost flawless heel toe steps. righty lags a little bit, but we're slowly but surely getting there. 

sleeping!

oddly enough the surgery has resulted in him sleeping a little better. prior to SDR we maybe got 1 full night of sleep a week. normally he'd wake up 1-2 times a night. but lately we're getting at least 2-3 nights where he sleeps fully through which is great for us. we're realizing that his spasticity might have come with some pain...i mean his muscles/hamstrings everything were so tight...it had to be uncomfortable. seems like getting rid of that has put him in a more comfortable space. 

funny story: so last week was a particularly bad week sleeping wise. no idea why...we were just up at 12:15 every night for about an hour and a half. d and i were zombies by the end of the week. finally on thursday he actually slept through.....................which would have been great except the older one woke up at like 1 and asked if he could climb into bed, and then at 3 the youngest (who sleeps like a damn champ) decided that she was feeling snacky and wanted a bottle. so yeah. dommy slept well but the other two raised his flag in his absence to make sure that mom and dad got no sleep. starting to think it's a criminal conspiracy. 

what's next!

well now that we've conquered SDR D and i have made another realization. speech has been really frustrating for us...dommy had words at 18 months and then just lost them. speech therapy is really frustrating for everyone. we made great gains doing feeding therapy but we feel like we're not getting anywhere with speech right now. 

so we decided to do some digging and we feel pretty confident that dom has apraxia of speech. my understanding of that is that he's smart enough to know the value of words and what words are, but just cant quite figure out how to make his mouth make the words. like we just cant quite get the muscle movement down.

all of this was a total lightbulb aha moment for us...i mean we had to teach him how to eat solids from the ground up...tongue movement, chewing, etc. we had to teach him how to move his mouth. makes sense that we'd have to do the same for speech. 

so on one hand it's a bit overwhelming to have another diagnosis on our hands, on the other we FINALLY have a name for what's been frustrating us. apraxia comes with its own set of therapy techniques and things to try...which is really really good news. we're ready to attack this one to get it figured out. 

feelings! 

there's a weird dichotomy for us...the more dom does the more impatient we get for him to do more. if for some reason we knew he wouldnt or couldnt walk, then we would be perfectly content...but now that he's walking well in his gait trainer and showing that he has much less spasticity in his lower extremeties...we just kind of want him to be doing more. we're so ready for him to walk because we know he's capable of it. we've got one more procedure in st. louis coming up in july to lengthen his heel cord and his hamstrings...and we're ready for that to happen ASAP. hard to be patient when you know exactly what you want. maybe that's a good thing. maybe being too patient would result in complacency. either way it's something that we kind of struggle with....knowing that we're making good progress, seeing that we have a decent ways to go, and just wanting to work as hard as we can to get there. 

we've settled in pretty well to the 5 therapies a week schedule...and i think Dom has found his groove too in what to expect as far as his daily routine goes. 

so far so good friends. we're trending in the right direction. 

Tuesday, March 15, 2016

SDR Day

it's 9 oclock and i've been up since 3 am, so you'll have to excuse me if this gets rambly and overly emotional.

a two year long dream was actualized today. the first time we heard about SDR was when dommy was about a year old knowing that we couldnt apply until he was 2. at 2 we got turned down and told to reapply when he was 3. at 3 we reapplied and got accepted...and here we are at 3.5 years old.

not to mention the anticipation of getting here for the past two months. everyday has felt like two days...one day full of the normal routine, but also filled with 24 hours of fretting about logistics, leaving our eldest with his grandparents for two weeks....not to mention our sweet gommy having his vertebrae cracked open, spinal nerves untangled and then cut. it's been draining.

but here we are.

about a week and a half ago we were at home and gommy bunny hopped (as he's known to do) over to our staircase and tried to get up the first step. he knows the motions well...lift one leg up, push with the other all with your hands on the second step, but his tightness wouldnt let him get up that first step. he wanted it so damn bad. he tried and and tried and after a while started crying out of frustration.

i picked him up and told him that as God was my witness, i was going to get him up those steps. we were going to get to the top of our staircase.

coincidentally enough yesterday at our pre-op PT evaluation he saw a set of stairs and managed to get up the first step by himself. i feel like that was his way of saying "you do your part dad, God will do his part, and I'm damn sure going to do my part"

so now one big step is done. it's time for recovery. the it's time to do 5 PT sessions a week for the next 6 months.

none of this has been easy. it wont be easy moving forward.

but it's so worth it. so very worth it.

today was a good day. today was the first day of what's going to be a series of good days.

Wednesday, January 20, 2016

an update on SDR--st. louis here we come



a little over a year ago we applied for gommy to be a candidate for selective dorsal rhizotomy surgery in st. louis. we were pretty devastated when we were rejected. at the time we had put a ton of hope into the possibilities that that surgery could provide--a life with lessened spasticity and increased mobility...and to get turned down was as if someone was saying that we werent allowed to ever have those things.

well a year later we put together a new application...complete with new videos and paperwork...and lo and behold we were accepted. not only were we accepted but the doctor told us how pleased he was with dominic's progress and indicated that he could see no reason at all that dominic wouldnt walk independently at some point.

read that again. the doctor thinks dominic will walk independently. HE THINKS DOMINIC WILL WALK INDEPENDENTLY AS A RESULT OF THIS SURGERY. i want to cry just thinking about it.

D and i are yin and yang. what she stresses out about i'm typically perfectly ok with and whatever i stress out she's perfectly ok with. D has no fear as it relates to this surgery...and me...well i'm not quite there. we know that this is what needs to happen and a few hours of surgery combined with a few months of intense physical therapy is a small price to pay for a lifetime of freedom.

however i'm trying to channel my inner kevin mccalister by saying "this is it...dont get scared now". i am terrified  to send my sweet gommy going into a spinal surgery. he's been sedated before....but it's that lack of control that lack of ability to be with him every step of the way. it's so cliche to say but i wish they would just say "hey we can do the surgery on you and he'll reap the benefits". man i'd sign up for that 10 times over. or perhaps if they said "well research shows us that if we cut off the dad's right hand it's basically the same as SDR" i'd respond with "great, at least now i'll spend less time on twitter"

but alas none of that is the way that things work. so right now i'm drawing from the strength of d and gommy. they are way stronger and way tougher than i am. i'll get there. but i might just have to fake it for a while.

the journey starts on March 11th with a drive to St. Louis and the surgery itself is scheduled for march 15. a day where d and i are able to put wheels into motion to hopefully give gommy a bit more freedom and maybe few more possibilities than he would have had otherwise.

time to get my mind right. we'll be ready.