a kendall update

because I have been a horrible blogger in December in spite of my best intentions and plans.

 

WE MADE IT!!!

 

I didn’t want to celebrate too loudly because I was afraid of jinxing it – but we made it to the big day of Dec 18, which marked the LONGEST stretch of time Kendall has been out of the hospital. Of course, this doesn’t factor in the entire nite we spent there in october, but I am going to still classify this as a good stretch of time! So WAHOOO!!! And praise God!

 

In other news – she really has been doing just beautifully.

She scoots herself around now in a very strange little monkey-like half crawl. I can’t even describe it because its not quite forward motion with a leg tucked under her, no, it’s more like she spins and rotates herself from Point A to Point B out of sheer willpower. Her therapists are all pleased that she is becoming mobile, and that she is doing it out of her own desire to move (vs. before when she was younger, she had no real motivation to move herself, we had to coax her into doing it). But (there’s always a but with this kid!) – the WAY she is moving is clearly her body’s way of overcompensating for generalized weakness in her trunk, and is going to start setting her up for some problems down the road if we don’t correct the pattern now.

She gets her new “magic shoes” (AFO – which stands for Ankle Foot Orthotics – braces) on Thursday, and we hope that that will help correct some of her compensations and balance her out a little more. She will get her spine scanned at the chiropractor on Thursday also so we can see why she is having a hard time rotating from her hips. The thinking is that she is so unstable in her hip area that she is clenching those muscles up, causing lots of lower back tightness all the time, but more specifically an inability to "let go” of those muscles to turn while she is using all her focus and energy to stay upright while sitting and playing. We will be talking with her coordinator about aqua therapy after the new year to see if we can help build her strength, loosen those muscles with the water.

So, yes, while most of you see the amazing progress Kendall has made week in and week out – its only because of a LOT of hard work, and dedication on behalf of her therapy team to continue to push her push her push her and wear her out day after day to get her there! Nothing makes my heart hurt more than when I hear “oh, lots of babies don’t walk till they’re about her age” or “oh my grandson laid around like that till he was 2 then just one day up and took off runnin’!” It isn’t like she “lays around” or “doesn’t want to walk”. She works HARD. For her it is probably the equivalent of me being at the gym working out at breakneck speed for three hours a day. And someone saying – “oh look! you lost all that weight overnite!” Losing weight never just happens on its own. Typically there is a large price to pay to lose large amounts of weight. In a similar fashion, Kendall has not just gained these skills magically on her own.

Every single thing she does has been taught to her by repetition, hard work, earned with her tears and sweat and five hour post-therapy naps to recover her energy. It is a family commitment to hours upon hours of therapy, to learning to play with her in such a way that we repeat the tasks we are given by her therapists to help her learn new skills, to not letting her do things the lazy way but forcing her to do things in ways that her brain and her muscles don’t often have the energy to do.

my little girl is training for the marathon of life. She puts in hours of hard work. And yes, they are finally paying off.

She signed her first word last week – “all done”.

She was getting casts put on her legs to be fitted for her braces. And her little hands flicked out as she looked at me and waved back and forth.

“all done” with this, mommy – she seemed to say. I’ve had enough now!!!

Yesterday my mom was passing out gum to the older girls and Kendall got a teeny tiny miniscule little piece of gum for herself.  Of course she was instantly in love, and five minutes later, another word. “more”. (signed).

We have worked and worked and worked to make her put her hands together. Every single therapist she has uses both words and signs, putting her hands in theirs to make the connection with words and sounds and signs. She hates having her bare skin touched like that, but over and over and over again we have tried. More food. More toys. More play. More blocks. And she just looks at us all like we are crazy. Which we probably are. But nada. Zip. Zero recognition of the fact that we are using a word, and a sign, as a form of communication. She just doesn’t process it.

But oh the magical powers of a piece of pepperminty gum.

She looked at her hands for almost that full five minutes. And then slowly, very slowly, and purposefully, her thumbs came together. It was so out of the blue we were all like – more??? more what? And when that gum came back out of the purse, the giggle that we got was our answer.

More gum.

Who would’ve thought?

so now my baby girl has two signed words to tell me what she wants.

More.

and all done.

I haven’t seen more come back since the gum, but I am confident that she will get it soon. Her therapist swears that she signed more during playtime today. So maybe I’ll get to see it soon. She is making more noises on her own now, babbling together strings of sounds. Every once in a while I will hear a new sound. But she dropped ma-ma. She wasn’t ever really saying momma in reference to me, but she at least had that consonant sound in her repertoire. It got dropped in favor of some other thing she picked up – maybe one of her new signs. I can’t wait to hear it come back. I can’t wait to hear her use it to mean ME. But i am so happy with the progress she has made, and is making, that I’ll try to be patient.

And we even had a good run of food days here for the past few days. We cut out all babyfood type foods and went to dissolvables and chewables only. If it sits in her mouth for long enough, she mashes it up enough to engage her swallow reflex correctly. Backwards from most kids with dysphagia yes, but not unexpected for Kendall the queen of backwardsness.

no real horrible reactions to anything (nilla wafers, graham crackers, cheerios, and mashed bananas), other than her usual GI issues that no one can make heads nor tails of so I stopped even trying.

Yesterday though she started in with this horrible runny nose and drooling like a madwoman, soaking through two shirts in a few hours. She also started making LOTS more pee, and needing to be vented more regularly than usual. And then by last nite she wasn’t swallowing ANYTHING correctly, not even her bottle (which she can almost always handle just fine). By all that i mean that everything she put into her mouth would end up being coughed out, hacked up, sitting in the back of her throat being gurgled on for a few minutes, etc. Clearly some swallowing dysfunction. And then she’d launch into these minute long coughing fits with a red face, real hoarse barky cough and then take a couple minutes to recover. No idea what that was all about. Her fever was 99.9 which is slightly higher than her highest average daily reading. She felt VERY warm though. I am sure it was just her body’s way of screaming out for rest, as she was up a little later than normal and her naptimes were cut short by loud sisters yesterday, on top of having physical therapy which is always a guaranteed wear-out.

So, we’ll see what comes of that today.

She was also slightly “off” colorwise (much more purply all over). And this is typical Kendall fare. It could mean nothing or it could be a precursor of some little illness. It could be isolated to just being energy depleted, or it could be a sign of her body trying to use up all its energy to fight someTHING. I’ve learned to not let one crazy day mean too much until I can see a pattern. Otherwise we chalk it up to just a little autonomic haywiring, run some extra pedialyte through her to help juice her up, and go on about our days!

So thats where we are today!

All in all – making much forward progress. Learning to adjust to Kendall’s randomness. Watching her find her place in this crazy den of crazy sisters. Rejoicing in babysteps.

Thanking God for his many good blessings.

 

thanks for checking on us!

 

terra