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Archive for developmental delays

Crystal Ball

By Goddess in Progress · Comments (11)·   November 2nd, 2012

I wish I had known

back then, in the hospital

that this day would come

Walkin'

I’ve said it before, but one of the hardest parts of Ellie’s first few months was the not knowing. Vague test results, odd symptoms and characteristics, and a general sense of “we don’t know how this will impact her life, her development, anything.”

Imagine the relief I would have felt, in March of 2011, if someone had been able to tell me that Ellie would walk. And not just “eventually,” but well before she turned two. Oh sure, walking at 20 months is still considered a delay. But I’ve known plenty of late walkers, later than Ellie.

Imagine the relief I would have felt if someone had been able to tell me that Ellie would talk. That, at 20 months, she’d have easily 20+ words. Is she speaking in two-word combos yet? Nah. But again, I’ve known plenty of kids with fewer words than Ellie at this age.

There is no crystal ball, of course. I had to just wait and see. I don’t know what the next 20 months will hold for any of my kids, much less Ellie. And I know that our work is far from over in terms of working with Ellie on all kinds of skills.

But damn, walking and talking feel like hitting the jackpot.

Comments (11)
Categories : Child Development
Tags : developmental delays, Gross motor, haiku, language development, talking, walking

Hide your valuables

By Goddess in Progress · Comments (18)·   April 12th, 2012

Mark it. At exactly thirteen-and-a-half months, Ellie has started crawling.

Just like that, she figured it out. Milestones like these always amaze me – one minute she can’t crawl, the next minute she can. Hell, when she was a newborn in the hospital, a significant part of me wondered if she would ever be able to crawl, period. And now, she can.

Of course, nothing really happens that suddenly. She’d been up on her knees and rocking for the last two months. She’s been pushing herself backwards (and getting stuck under furniture) for a while.

stuck under the bench

In the last week or two, she had very occasionally begun to do a sort of inchworm/commando crawl. Once or twice a day, she managed to propel herself forward by an inch or two. I thought about trying to get it on video, but it was so infrequent and so short-lived (she would tire out quickly), I never managed it.

Yesterday, her physical therapist was working with her and trying to encourage a real crawl. With just the barest of support, she suddenly took two or three “steps” forward and I almost fainted.

Later that night, she did it again. And again.

This morning, catching it on video was no problem at all.

And then, the realization hits: our house is not even remotely childproofed anymore.

GOTTA GO.

Comments (18)
Categories : Child Development, Toddlers
Tags : crawling, developmental delays, Gross motor, video

Eleven months

By Goddess in Progress · Comments (12)·   January 25th, 2012

Eleven months. Seriously. I’m not kidding. One month shy of a whole year.

I’m going to say this now so that I’m not a party pooper on her actual birthday: it really doesn’t feel like it should be so close.  And not just in the usual “time flies” way, though that’s always true.  I just have such a disconnect between Ellie, the little person in my life, and the day that this baby was born. Obviously I remember it very clearly. But the ten weeks that followed were so surreal, my memory of March and April of 2011 will always be warped.  She didn’t even come home until May. So to think of celebrating in the middle of winter is kind of strange. Plus, developmentally-speaking, she’s not doing the kinds of things that other nearly-one-year-olds are doing. I don’t feel like I have an almost-toddler on my hands, the way I would otherwise expect of an 11-month-old.

THAT SAID…

The upside of being told in the hospital that your baby could potentially have very significant developmental delays and perhaps permanent deficits? Every time she makes a new leap forward, every time she does something sort-of-normal, it’s cause for celebration. (Remember that line from Say Anything…? “Start out depressed and then everything is a pleasant surprise.”)  When we were still in the hospital, and they suggested that there may be gross motor issues of TOTALLY UNKNOWN severity, I silently wondered things like, “maybe we should move to a one-story house in case she never walks and needs to be in a wheelchair.” Had I voiced that thought, I can tell you the doctors would have just looked at me and shrugged. They had no way of knowing which way it would go, either.

But my girl? My girl wants to be on the move.

mobile without crawling

Sitting up and rolling over are old news, she’s a total pro. While she can’t yet get herself up to a sit, she can go from sitting down to her belly with increasing speed, purpose, and grace. While on her belly, she now uses her arms to pivot around, and sometimes ends up pushing herself backwards until her legs are stuck under the couch.  Between the pivots and the rolling, I can no longer assume she’s going to be right where I left her. That photo up there? I put her down on the quilt in the foreground, sitting up. She managed to get herself over to the TV somehow.  It ain’t fast, but she moves.

In physical therapy, we’re working hard on getting more strength in her legs, hips, shoulders, and arms in the hopes of getting her to crawl. With as good as she is at sitting, we need to have her on her belly more so that she can learn to crawl before she learns to just scoot around on her butt. The physical therapists swear up and down that, once babies learn to do a seated scoot, it’s nearly impossible to teach them to crawl. So we spend time on her belly and try to scoop those knees up underneath her instead of being splayed like a little froggie.

25::366::2012

But coolest of all, in the last week I can see her try to pick those little hips up on her own. Her stamina is improving almost every day, getting stronger and steadier in those hips and shoulders, kicking those legs, bouncing that little body.

I don’t know how long it will take, but my girl is going to crawl.

How awesome is that?

My big, awesome, 11-month-old girl. My munchkin, my pumpkin pie. What a joy you are. Happy almost-birthday.

Comments (12)
Categories : Birthdays, Child Development, Infants
Tags : crawling, developmental delays, Gross motor

Ellie, 9 months

By Goddess in Progress · Comments (10)·   November 28th, 2011

I have a particular gift for dates. I can remember the date I saw U2 when I was a freshman in high school, the date of my college graduation, and plenty of other random things. I remember a lot of birthdays. Well, sort of. I can tell you someone’s birthday, no problem. I remember the several days ahead of time that it’s coming.  And then the actual day arrives and I completely forget until two or three days later.  Such was Ellie’s nine-month birthday. Totally knew it was coming, totally forgot on the day of (last Friday, for the record).

Anyways, my sweet girl is now nine whole months old. Three-quarters of the way to her first birthday. We’ve just had her nine-month pediatrician visit and her semi-annual Early Intervention evaluation, so I’ve got a pretty good picture of where she stands.

Nine Months

As for the vitals, she’s about 17lb12oz, and 25.5″. That remains a perfectly average weight and a WAY BELOW AVERAGE length. Short and squishy, that’s my girl.  Lucky thing got four shots this morning. It was supposed to be three, but the ancient pediatrician accidentally gave her HepA instead of HepB, so she got them both. When is my regular pediatrician coming back from maternity leave, again?!

EI re-evaluates kids every six months to make sure they still qualify for services (the child has to show at least a 30% delay in one or more areas to qualify). Ellie qualifies automatically based on feeding alone.  They scored her at “0 months / newborn” in the area of “self care,” which is entirely feeding at this age.  Frankly, they’d probably give her a negative score if they could. She eats nothing. She wants to eat nothing. She gags on everything. The feeding specialist we see through the hospital is visibly disappointed by her total lack of progress, and has proclaimed Ellie a “tough nut to crack.”

Feeding therapy sucks. I literally dab my pinky finger in the smallest amount of baby food you could imagine, and try to get Ellie to let me put it near her mouth, on her lips, or even just barely inside her mouth. Sometimes it’s borderline acceptable. And then sometimes it touches her tongue the wrong way and we have a two-minute gagging fit. It is so, so demoralizing.  But we have to keep trying to walk the very fine tightrope of gently pushing her to try to get her used it it and to tame the gag reflex, while not going too far or too fast and creating/strengthening an aversion that will set us back several more months. It’s awful. I hate it. Period.

Nine Months

Gross motor skills scored at 5 months. On the one hand, Ellie’s sitting is getting very good. She’s rolling back and forth quite a bit, especially at naptime. She has even (after the evaluation, of course) started to get herself from sitting, down to her belly, then rolled over onto her back. It’s not terribly graceful and usually involves a slow faceplant, but it does seem to be quite intentional.  She still lacks a lot of strength in her arms, and puts very little weight on her legs. Much work yet to be done here.

Nine Months

Fine motor skills were even lower at 3 months. That might be a little low, in my opinion, but regardless, she still needs a lot of work. One problem we’re having is that she is not terribly motivated by toys, so trying to entice her to grab something is very hard. Her own toes? No problem. Your face? For sure. Bright shiny baby toy? Meh.  She is a lot more likely to grab things and play with them if she’s reclined or supported while sitting. When she’s sitting on her own, it seems like she’s using all of her energy to keep upright, nothing left for those little fingers.

Cognition was placed at 7 months, and the evaluator even wondered if it would have been higher if her fine motor skills were better. Some of the things they look for the baby to do to demonstrate understanding involves using their hands to manipulate objects. So it’s not necessarily that Ellie didn’t understand something, but potentially that she just didn’t have the fine motor skills to act on it. Regardless, I’m very happy that she falls with a fairly normal range on this one.

Receptive and expressive language were at 5 and 7 months.  She makes a lot of different sounds, consonants and pitch and range and all of that, which is excellent. She doesn’t consistently respond to her own name, though.

And finally, social and emotional development. Clearly, she is Daniel’s sister – they scored her at 10 months.  I couldn’t tell you exactly what it is she does that makes her a social overachiever, but she is most definitely an interactive baby. She loves to smile at people, loves to have company, loves to be entertained.

Nine Months

Feeding crap aside, I am really happy with all of this. I am especially thrilled that, at least for now, her cognition, language, and social skills are reasonably within the normal range. Every delay has its challenges, for sure. But the fact that she is so sociable, the fact that she seems to be making strides toward communication… well, that makes the rest of it downright bearable if you ask me.  Motor skills I can work with. We can practice, we can strengthen, we can adapt. That spark in the eyes? That seems harder to cultivate, harder to compensate for.

Maybe I’m way off base, I have no idea. All I know is what I’ve got, and I am so glad that my girl has plenty of spark.

Comments (10)
Categories : Birthdays, Child Development, Infants
Tags : cognitive development, developmental delays, Early Intervention, feeding therapy, Fine motor, Gross motor, NaBloPoMo, Social/emotional development

Ellie, seven months

By Goddess in Progress · Comments (21)·   September 28th, 2011

Ellie has spent the last few weeks working on a new trick.

One of the main characteristics that her providers have mentioned from the very first day she was born was “low tone.”  For her age, she is noticeably weak and floppy. We had to support her head when holding her for much longer than you normally would, and tummy time was a complete non-starter.  While her squishiness does make her extra cuddly, we’ve obviously been working on trying to help her get stronger. She gets physical therapy once or twice a week, and obviously we practice on our own. Thankfully, we have noticed steady improvement since starting PT back in May.

Since last month, tummy time has gotten much much MUCH better. She’s lifting her head way up high without any help, is starting to push up and support weight on her arms, and is generally a whole lot more tolerant of actually being on her belly in the first place.

Sitting is hard work

It’s still hard work, though.

Sitting is hard work

Even more noticeable is that, when she’s sitting on my lap, she no longer wants to lean back against me. She is constantly pulling herself forward, doing a little crunch with those core muscles to get into a more upright sitting position. The first time she did it, I was so surprised I almost let her fall off my lap.  In PT, we started working on a little tripod/supported sitting. She’d manage it for a second or two, but she still keeps her hands in fists a lot of the time and doesn’t have a lot of arm strength, so there’s a lot of collapsing and folding in half. We keep pillows nearby.

Sitting is hard work

Still, we’re working on it. Sometimes you can position her just right, help her lock those elbows and bend her legs for a nice supportive base, and she can almost get the hang of it.

Sitting is hard work

And then, every now and then, you’re supporting her and you can feel those muscles engage in just the right way. And you have five or ten seconds to back up with the camera, and catch this:

what a big girl!

With all those weeks in the hospital, talking about “abnormal MRI” this, and “hypotonia” that, and vague references to potentially severe cognitive, language, gross motor delays… I never imagined she’d be this close to independent sitting at a scant seven months.  She’s still not what you would call “developmentally appropriate.” There’s still tons of work to do. But man. This is freaking awesome.

Almost as awesome as consonants. Did I mention she is babbling with consonants? Two of ‘em at the moment, “m” and “b.”  (And I may have heard “p” this morning.) Again, much closer to the range of normal development than I could have dreamed five or six months ago.

I love this stuff. LOVE IT. Oh, and this sweet, delicious little girl. She is just too much.

Comments (21)
Categories : Child Development, Infants
Tags : developmental delays, Gross motor, language development, sitting

The Green-Eyed Monster

By Goddess in Progress · Comments (24)·   June 13th, 2011

The first week or two that Ellie was home, I felt like I was sinking.

A big part of it was anxiety over bringing home a baby with special medical needs. She was still recovering from surgery, little wounds healing, and this new piece of hardware on her belly that I was, to be honest, afraid of. What if it gets infected? What if it gets clogged? What if it falls out?  If she cries too hard, will that hurt the internal stitches? What if she has to go back to the hospital?  It was awful. I am not a generally anxious person, or parent, by nature. I’m not used to coping with this kind of stress on a daily basis.

But we had checkups with the pediatrician, and twice-weekly Visiting Nurse care. I started to understand what was normal and what were red flags. Ellie gained weight, I got used to the equipment, and I stopped getting the heebie-jeebies every time I looked at her belly.

Still, I got that sinking feeling in the pit of my stomach on a fairly regular basis.

It should come as no surprise that I have found it difficult to be around other babies.  I had no shortage of pregnancy buddies – it seemed like half of my friends and cousins were pregnant at the same time as me, and new ones keep announcing.  It’s incredibly hard  to watch each of them in turn bring home their healthy babies at two or three days old. To see them breastfeeding with relative ease. To watch their babies hold their heads up straight and put weight on their legs and take a bottle.

What I found more surprising, though, is my visceral reaction to seeing pregnant women, whether friends or strangers.  Each time it’s like a PTSD flashback. The emotional trauma of Ellie’s unexpected NICU stay and medical issues has applied itself, somewhat retroactively, to my pregnancy. The anxiety that I felt at the end of my pregnancy, between the polyhydramnios and the low-side-of-normal fetal movement, is now the only thing I can remember. Like a big flashing WARNING SIGN that I didn’t realize at the time.  And I see other pregnant women and I remember that I didn’t know, then, what was coming. I couldn’t have, really. I had a few odd symptoms, took tests, and everything seemed OK. Or, at least, unexplained. Just one of those things.  Now, to be overly dramatic, all I see is the truck that I didn’t realize was about to run me over.

I am, to put it bluntly, jealous. Achingly jealous of all those healthy pregnancies and “normal” babies. How many babies get discharged from the hospital with their mothers? 95%? 98%? Why never mine? Was it really that much to ask? I have days when all I want to do is shake my fist at the sky, curse God or Fate or Luck or Statistics, and throw myself a pity party. I am so mad, so jealous, so upset to know that I’ll never have that experience. I want to hide from my friends and my family and their “normal” single babies.

But it doesn’t last long, and that’s how I know we’re going to be OK.

Yes. This sucks. It sucks a lot. It sucks that Ellie had to have a G-tube, sucks that we might be looking at some moderate-to-significant developmental delays. It’s an uphill climb, for sure.  But to paraphrase my friend Amy, spending time at the Big Hospital gives you a certain amount of perspective.   You look at the kid to your right and think, “what are you even doing here? What do you have, a sniffle? I have it SO MUCH WORSE than you do.”  And you look at the kid to your left and your heart sinks and you think, “thank God I don’t have to worry about that.”

Some parts of this suck, but it could be a whole lot worse in a lot of ways.  As the weeks go by, as I get used to Ellie and her needs on her own terms, the intensity of how hard it is to see other newborns or other pregnant women is tapering off. It’s still there, and it might always be there. But it fades a little.  I don’t actually want to withdraw from my friends. It sucks to have a big part of my day-to-day vocabulary be foreign to almost everyone, but instead of pushing them away, I will try to draw people in. I don’t want to hide myself or my daughter or what she needs. And I don’t want this to come across as being about Ellie, herself. She’s a sweet, wonderful baby. She didn’t choose for any of these things to happen. She doesn’t know any other reality. She needs what she needs, regardless of how it might be similar to or different from any other baby.

So I hold my head up and I go about my day. I get used to my new normal. I work on accepting it for what it is and try to just shrug and move on when I start to think about what I had hoped it would be. It’s not that different from the early days of twin infants, when people would stop me in the grocery store and, wide-eyed, ask me how do you do it? Is there really a choice in the matter? We take care of our kids. This is our life. We love them and we do what needs to be done, whether that means juggling two newborns at a time or learning how to work a feeding pump. We just do it. End of story.

But I will always be a little jealous, a little wistful for the majority experience that I’ll never have.

Comments (24)
Categories : Hospital, Infants, Newborns
Tags : developmental delays, g-tube, NICU
   

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