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Monday, March 31, 2008

A day out at the New England Horticultural Show

We've been busy seizing the day. Finally, finally we are on the path to Spring and warmth and fresh air. It's been a long Winter. But here we are out on a chilly, windy day. Admittedly I didn't enjoy the show as much as last year where you can see here that we had a blast. It seemed like there were less installations and more vendors. Alas. However, Ellie had a good time seeing all the plants and a corn goddess. Her attentiveness is beyond that of your average 5 year old and delightful. You can see her with her own flower, named "Flower", hooked on to her waist strap. This happy yellow and pink velvet flower has become her favorite toy. She would consult it now and then throughout the show. She has been absolutely adorable about Flower. I attach it to her car seat straps on our way in to school. Yesterday she got very quiet and at a stop light I looked back and saw Ellie rub her nose against Flower's face and then lean back and smile at Flower and do it again. She even put Flower in her mouth just a little - but for Ellie with all her sensory aversiveness especially around her face - this is a huge deal. So huge it made me cry - right there on the way to school. It was the cutest thing. Sigh. Can she stay this little forever? She's just so cute all the time.

Wednesday, March 19, 2008

Water Fairy!

Ellie gets to go swimming twice a week at her school. These pictures are of the first time that she has ever been in a float - at all - without being held. Teacher was never far away but it looks like Ellie really loved the freedom of being on her own in the water. I think she looks like a ballet dancer in the first one! Ellie's teacher Kristin sends home pictures of Ellie's day on a regular basis which is yet another sign of excellence and nothing to hide and just what I need as a mom. I miss Ellie when she goes to school but who can argue with her having experiences like this. There is no way I could duplicate the variety of fun she has or the learning she gets. It's truly amazing. My little Water Fairy!

Tuesday, March 11, 2008

The Road Not Taken

"Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference."

Am I in denial or enjoying the gift of experience?

I have been thinking a lot lately about the movement to build awareness to the serious medical sequelae due to premature births. This movement seems to be led by other parents of preemies as well as medical professionals. The sequelae, or following complications, are serious, sometimes deadly and more often then not effecting the child life long.

I was speaking to one Ellie’s doctors about how few physiatrists are out there and I said I thought there were going to be even more kids that need them because they are saving the preemies these days. And he said that actually the rate of disability has stayed the same and was not increasing as medicine was catching up with itself. What he meant by that is, for awhile doctors could save the preemies but would inadvertently, unknowingly, do things in that saving of them that would injure them for life that now they don’t do. Like how in the NICU they would give the babies oxygen to keep them from desaturating but then keep them on the oxygen while their blood oxygen level stayed at 100% for hours. The result of this was that the premature infant’s retinal vascular structure would grow like crazy hurting their vision to the point of blindness. Look at many of the preemies on the blogs and loads of them have thick coke bottle glasses for this very reason. This condition is called
Retinopathy of Prematurity (ROP). There isn’t as much ROP anymore, even just 5 years later. Ellie does not have glasses because of ROP. Her vision is compromised by her hypotonia, which makes it difficult to keep her eye muscles still. We were lucky though because she didn’t have to be on Oxygen that much because she did not, have chronic lung disease that many of the preemies do.

But the doctor saying that the preemies were coming through it better was heartening to me. I wonder if medical science will keep pushing the envelope so that one day the viability age will decrease even more. I am not advocating for this one way or the other just wondering. I know that that viability rate moved from 27 weeks to 23 or 24 in the past. Ultimately I am still of the stance that it is the parents’ decision and that the doctors are responsible for a) giving them that choice and b) understanding themselves and then communicating the current data. Communicating trends would also be good because medical data with it’s limited populations from which they draw conclusions such that the numbers should definitely be put into context so that parents understand what is really known and what is a guess. And in the premature baby world there are still guesses, especially about outcomes.

If the doctor that I had this conversation with is right then it seems that as medical science catches up with its experiments in saving the preemies the success rate is increasing. And that’s good. I am now five years away from the NICU experience. We met with Ellies pediatrician today for her five year check up and he was happy to get to see Ellie when she was not ill. He said it was obvious to him that Dave and I were doing a good job. That was great to hear from a doctor I really respect and knows what he is talking about because he runs the NICU at Brigham and Women's hospital in his spare time so he really knows where Ellie started. When he first took Ellie on, he was grave and straight faced and serious. I think he is pleased with her progress. I can't believe it has been five years. This visit, this accounting for where she is now, this weighing in and measuring, got me thinking about what success looks like. That is a quote from an old boss of mine in Organizational Effectiveness. He always used to ask the teams he was leading, “What does success look like?” Because teams always say they want to be successful. So it’s good to know it when you see it, right?

So what does success look like when it comes to saving a premature baby?

Well success most obviously might be the totally healthy child with no other obvious sign of the rough start than the oblong preemie face, which let's be honest is adorable. But could success also be the child that only has mild cp and can ambulate but is otherwise within the usual developmental ranges? Sure they will need assistive technology, possibly a wheelchair eventually or a cane or AFO’s. But is that tragedy?

Could success also be the child who is left quadriplegic, but not twisted and bent in his chair, and instead an example of what can happen when parents cope with this different and often difficult path extremely well with hope and constant vigilance over their child’s life? So that he then goes on to contribute thoughts and words to the world that enlighten us all? He can do this because his parents never treated him like he was disabled.

What about my Ellie? Is she a success simply because she is here and in one piece after her atrocious start? Is that enough? Is it correct to suggest that everything she is accomplishing is a success story or is it better stated that she is just like any other kid doing well at some things and not so well at others? Or am I denial to suggest that she is doing well at all? What if I admit she is different from other kids? What if I freely admit that I worry for her future? How do these worries really make me different from any other parent?

Was it something unique in my past that prepared me so well that today my main awareness is that I have this loving, funny, sweet, opinionated, beautiful little girl who lights up my world and warms my heart and soul every moment she breaths? Or am I just a sad sac in denial and if I had any sense would just focus on illustrating all that is wrong as a warning and help to other parents that they may avoid my horrible life?
Hmmmm. Now that’s a tough one.

Thursday, March 06, 2008

There and back again, again

Where oh where does the time go, especially when I am having so much fun?
Let's see, since my last post I have had a horrible bout of sciatica that was followed by me seeing a "specific" chiropractor. Specific chiropractic deals mainly with upper cervical care - meaning the atlas and axis which are the two bones that hold up your head. And seems that I literally had my head on crooked. I realize that many of you just now might have had an aha! moment about me. You might be thinking, "Ok, now I get her, that makes so much sense" right!? I'm so with you there. ;-)

But it did help loads - not that you just go once, you go three times per week so it's a bit of a time commitment. And then a couple of days later I got a ton of consulting work. In fact, my colleague who hired me, said the moment he saw me, "You look like a published author!" So I have to attribute some of getting the work to the book, which I mentioned here. And then, Dave and I joined a gym. The really gawd awful expensive, over priced, doesn't even have a towel service gym. The same one that is literally 5 minutes down the road and for us - that means we will actually use it. We joined because I was lying there one night, in agony from the sciatica feeling about 300 years old and I said to Dave, "What is going on?! This is just unbelievable."

"We have to exercise." he said. And he is right. I don't think we are the first special needs parents who have put working out at the bottom of the list. Not that we intended to put it there. But it just got there, at the bottom, under things like, work with Ellie all day, pick up meds, bring her to that doctor, get up at night with her, try to hold down a job and house hold...and on and on.

So we joined a gym and started going there a few times per week. I am not allowed to tell you what the group exercise class we do is because Dave will get in trouble with the Irish. Let's just say it's quite a stretch for an Irish man to be there. And on top of that he is pretty good at it. So that has all been great. Working in my field doing workshops with large groups of executives has been exhilarating but bad for blogging.

And then, just as my sciatica was a bad memory, two days ago I got hit by a car. I was in line waiting to go through a toll when all of the sudden, BAM! My car lurched forward, luckily not hitting the car in front and behind me I see a car with their front hood quite crumpled. Me and the other driver were both really civil to each other, both able to drive away after we had exchanged information. I wonder how she is doing now? Wednesday, the day after the accident, I could barely move and the sciatica was back. Upon examination today I was diagnosed with whiplash, which in my case means tissue damage in my spine. Major ouch and ARRRGGGGGG! Just when I was starting to feel really great, back to the starting block.

As it turns out getting consulting work, being in car crashes, working out, and being a mother are all really, really bad for blogging and painting for that matter. It's all an adjustment and now I have to figure out how to fit more in. The really bad part is that there are all these posts rolling around my brain. If anyone out there knows how to acquire a penseive I could really use one right now! Also, we just found some really cute videos of Ellie when she was little. Soooo cute and I will post them over the weekend.

Oh, and we are taking Miss Ellie to the same chiropractor and her head control has improved and she is sleeping better. (Remember to keep that last bit on the Q/T ok because, well if you have been a frequent reader of this blog, you know who we need to be careful not to mention her sleeping through the night to....!)

Miss Ellie is doing GREAT in general. She is reading and spelling more and more words. She is trying really hard to talk and it's starting to sound more like words. She is using both legs now in her pony and able to tolerate her stander for 30 minutes up from 15 at a time and GROWING and GROWING. We have her 5 year appointment (I know it's way over due) next Tuesday so more to report then. Overall, she is the sweetest, cutest, funniest little girl a mama could want.

Her latest, cutest, new-new thing is that she loves blankets. She still likes to try different seats. But she has discovered blankets. It's been really cold here and she figured out how to tell me she wants a blanket over her. She loves to sit on the couch with me and have a blanket over both of us. If it's not over me too, she will then work to adjust it so it's over both of us. Soooo cute. We say, "warm, snuggly blanket" and that makes her laugh. Sometimes I wish she could stay at the age she is forever because it's just so adorable but then she does new things and they are equally as cute. Oh, and one more thing, Ellie wants to dance like her classmate Xavier. So during circle she will want to stand while he is standing and dance too. Is that not the greatest thing?!

She is growing and changing and balm to a mama's soul.

Oh, and one last thing, Yang-May Ooi, author of Fusion View has asked me to contribute to her book about blogging communities because of the little community that hangs out around Ryn Tales. Cool huh?! I will keep you posted. Don't have all the details yet. But she did make me see there is a community here, I just think of you all as my bloggy friends, but it is a community in the sense that it has been a huge source of support and fun and learning for me.

Ok, penseive session over. (for those of you who don't get that reference, you really do need to get the finger out (sorry, Irish idiom there) and read Harry Potter). ;-)