Friday, March 26, 2010

Friday Haiku - A birthday is coming soon, but not soon enough

In other home news
Claire has learned to do zippers
Am I obsolete?

Alas, I am not
throughout the house one can hear
Mama, wipe my butt!

I'd rather she did
or at least use the word bum
I'm not successful.

Three is much harder
than terrible twos as claimed
I'm glad she'll be four.

Perhaps she will stop
calling me poopy Mama
and laughing wildly.

Monday, March 22, 2010

The Baby Bamboo - it's for you!

To be or not to be? To crawl or not to crawl? Clearly there are people on both sides of this issue, for typically developing kids and for those with movement issues due to medical conditions. My key PT wanted very much for Hannah to crawl, but reassured me that should she not do it, we could get those skills back when we worked with her PT plans outside at the park. However, he wanted her crawling if we could get it. The other PT with whom we work, and whom Hannah actually loves, didn't care whether she crawled or not, he just wanted her moving in order to not impact cognitive development. Parents of typically developing children may struggle with the same dilemma - studies indicate that some kids who don't crawl before walking or who do so for short time frames may have lower cognitive skills or less developed gross motor skills later on, while other studies reach opposite conclusions and suggest that crawling is simply not necessary.

I told myself it wouldn't matter if we couldn't get it, since Hannah was adept at butt scooting to such a degree I doubted her cognitive skills would suffer as a result, but we kept trying. Hearing from the therapists on both points of view, I thought of all the ways a lack of symmetry has affected me in my own health. My neck injury, as a result of car accident, is not symmetrical, and contributes to pain. When my left knee acts up and I have to shift weight differently, my whole body gets weird. I think I can begin to understand how adults with CP have pain as a result of straining against misalignment in the spine and joints caused by weight shifting that is too far from symmetrical. As humans we will never be perfect, but being too far off the symmetrical mark seems clearly detrimental. As I understand, as a parent of this particular child, it is clear that crawling develops muscle strength and would improve coordination in simultaneous movement with both sides of the body, and it will transfer to how her walk will feel and look later. Research indicates movement from crawling creates or increases myelin in the brain, allowing faster neuronal communication. Crawling is thought to stimulate integration between the hemispheres of the brain. Basically, if you can get it, it is just damn good for you, especially when you are not starting out with a typically developing child.

And so, I told my PT that Hannah would be happy to be his model for promotional info on the brace he has manufactured and will now market for this purpose. We agreed to let videos of Hannah be distributed and so, the real purpose of this post becomes clear: go to YouTube and see two videos of Hannah using the "Bamboo brace" and view the results.

YouTube - Hannah Learns to Crawl With The Bamboo Brace

YouTube - How The Bamboo Brace Helps During Play

I also have later videos of Hannah free range crawling about the house, which I am sure I will post ad nauseum as I am so proud of her achievements. As you view the YouTube videos, please ignore me. I am allowing these unflattering views in the interest of benefiting others. It is for the children, people, for the children. Won't someone think of the children?

So what did the Bamboo do for my daughter? Early on we just wanted to break that bent arm pattern so common for kids like her, and breaking the pattern in the arm meant rewiring her brain, and strengthening muscles in her shoulder, trunk and back. My OT said it could be bad to limit any movement that wasn't necessary but now that OT and the orthopedic surgeon say you just don't see hemi kids with that kind of range of motion in their shoulders and upper trunk. So it helped us get to independent sitting, it helped us pull up to stand, it helped us learn to crawl, and it doesn't interfere with fine motor skills since she doesn't do much with that yet anyway. As far as I can tell, it helped rewire her brain to make new patterns that don't involve a perpetually bent elbow pulling her shoulder out of normal range, and its presence made her move her arm differently and build strength and range in the upper arm, pecs, and traps.

Would I recommend it for your child? Absolutely and without hesitation. Would I recommend your therapist talk to my PT and see if it might be a fit? You bet. If you find this post far out in the future, should you still email me for a personal private testimonial? Yup. Will I let my baby be studied for peer review evaluations of the technique and who it should be used for. Yes, yes, yes.

Do I feel lucky, on behalf of my dear daughter, yes, yes, yes. Would I have ever allowed my image to be used on YouTube in this manner if I wasn't a true believer in the technique and the product? Longtime readers will note I had only twice allowed long shot distance pictures of myself on this blog. It is for the children, people.

For the FTC, did I get anything for this product review? As beta-testers of the Bamboo in development, we received the early version and final products for free. But I would have paid, because it is full of the awesome. My baby actually brings it to me and holds out her arm to have it put on.

The Baby Bamboo - its for you! Really.

Saturday, March 20, 2010

Cerebral Palsy Awareness Day

CP Awareness Day: who knew? As I often do, I logged on to read the blogs I enjoy and see what's new, some of which are simply interesting snapshots of people's lives, and some of which are blogs specifically focused on parenting kids with a variety of disabilities, including cerebral palsy. Otherwise I wouldn't know today was special.

You never see it coming. I was aware that my first daughter's early birth and more particularly her low weight put her at risk for a variety of health issues but it seemed we had dodged that bullet. I was convinced if I had pre-natal care that focused on catching the failing placenta at the earliest moment, we would be out of the woods. My pregnancy went full term, with no placental poop out and just some low fluid readings or slightly high BP readings but my high risk doc let me go to the due date. Hannah's APGAR scores were good, she seemed the picture of health and was, I thought, on her way to becoming a good nurser. I didn't see MCADD coming. The nurses said her temp was low, too low to warm on me, and they took her to the nursery, which I was very familiar with, having had Claire spend a month there. They charted that she presented with signs of hypoglycemia and they started antibiotics, tried to give formula and monitored her blood sugar twice more, then started the glucose IV almost two hours after they noticed the low temp. I think an earlier intervention would have prevented the apparent brain injury that caused her hemiplegic cerebral palsy. At five months of age I began to feel some concern for her fisted hand, and I googled my way through pages of milestones and diagnoses and I suspected CP. Her doctor was not keyed up but I was, and then when she didn't sit on her own according to milestone charts he backed off his stance of wait to see what happened and referred me to his favorite private provider of physical therapy, Michael J. Workman, PT extraordinaire. He diagnosed hemiplegic CP without hesitation and we got right to work on a therapy schedule to get Hannah to sit independently. We now see him through Early Intervention at reduced costs, we get services for free at Shriners because we happen to live about a mile away from one of their centers, and we see the specialty clinic that manages her metabolic disorder concerns at the intermountain west's premier children's hospital. All told, she now sees a pediatrician, a genetic metabolic specialist, an orthopedic surgeon and a neurologist twice a year, and we have regular visits with two PTs and two OTs since we use both Early Intervention and Shriners therapy and orthotics services. And I have health insurance.

A lot of the bloggers who posted on this topic have talked about what they were told their kids would never do, and how they proved naysayers wrong. My doctors never told us that stuff, thankfully. Honestly, I didn't ask. My key person has been a PT, the first we worked with and whom I adore, who has always couched his predictions as what she can do and when she can do it and although I work with many others, all their advice is secondary. Reflecting on this, I should perhaps work on a thank you gift for Mike, because people, let me tell you, this man is gifted when it comes to my daughter. He is upbeat and positive and excited about my daughter's future. Let that be a lesson to any therapists who see this post, the tone of the visits with this person is enormously powerful, and the talent he brings to ideas for what helps Hannah is exactly what my family needed. He has a new and not yet accepted idea for elbow bracing that I believe is why Hannah can now crawl, and that skill will impact her weight shifting abilities for years to come. Years. A lifetime. I think Mike feeds me little bits of possible negative outcomes here and there, when he thinks I can handle a little more knowledge, like when he mentioned labile personality traits (as if!) or that although her muscles are loose now, she could tighten with a growth spurt and it will seem as though we have made no progress (as if!!) or that being smart means Hannah is harder to work with because she is wily (hello my life when I have two teen aged girls!). But he never says what she can't do, he only tells me what she can.

I probably could have identified Easter Seals as the major campaign for fund raising for kids with movement problems other than muscular dystrophy but I'd never heard of the Children's Hemiplegia & Stroke Association. I don't know what color our ribbon is or if we even have one. Before a year ago this month I thought of CP as something that left you in metal braces, on crutches, in wheelchairs, or in care facilities. I didn't know about how people function with it, and live and live well. I only recently learned that Hannah might have a lot of pain as an adult if she pushes herself like Erin does. Somehow I bet there are a few more obstacles in the path before us than I have seen so far but I am trying not to go looking for them. I love to see blogs about families who are doing what we must do, and that is pretty much all the research I allow myself right now. The people are inspiring but the raw fact of the medical situation is daunting. I have no idea what our course will look like in education, or if we will have to face decisions about scary treatments in the future. Oddly, I have found tha MCADD is something you can forget about when all you think about is getting your child up and moving, and CP is something you can forget about when your child with a metabolic disorder is not eating. Surprises abound. Despite her extraordinary cuteness, I don't think Hannah will be a poster child for Easter Seals because she won't be that impaired. Hannah is one of the lucky ones. That is what I thought about today. We are lucky.

Friday, March 19, 2010

The alliance of Dentists, Diet and Dialysis Centers thanks the Utah legislature for keeping candy in our schools

Never let it be said that I am afraid to make a fool of myself in the name of good, clean fun. No, not I.

The St. Patrick's Day Parade in our town generally has more participants than viewers, and many of us enter in the "novelty" category. This year's entry focused on the wisdom of our state legislators deciding to keep vending machines in the public schools to keep receiving the money generated, despite health issues for kids who choose Frito's over the hot lunch. The kids along the route enjoyed cheering for M&Ms on the hoof, regardless of the sarcasm, but the parents liked us even more. The only unhappy folk were Claire and Hannah, riding in the stroller and feeling chilly, even under the heavy duty felt Reese's bags I made them wear.

Hey honey, was that peanut butter you put in my chocolate?

Hannah goes wild but does not take off her shirt

This post is entirely photgraphic, and just demonstrates how Hannah is full of the awesome. Tomorrow you'll get Claire and dental surgery, today, just consider the wee one.

Thursday, March 18, 2010

She crawls at your request

So now I've gone and posted all out of order and the next few days will have you travelling backwards in time, but tonight was the first time I caught Hannah crawling on demand on video. I used the shorter video as a courtesy to you, but rest assured, you will see more video here. Faster! Longer! Uncut!

My most favorite PT says Hannah is the best ever hemiplegic patient at unbraced crawling he has ever treated. The best in seventeen years! She is a star and I am bursting with pride.

Thursday, March 11, 2010

Tempus fugit

Isn't that Latin for time flies? I don't even have time to google it for myself. Gas food lodgers have been on the move, on the hoof, in the van, hoptoiting all over it seems. For example, yesterday morning I blew off work, had PT at home for Hannah and Claire with me, dropped Hannah at day care and went to Claire's very first ever dental visit (not a success) grabbed bad fast food to eat in the car on the way to art class, dropped Claire back at day care and hit Costco for necessities then back home to put the dinner I would be serving my bookclub later on delay bake and finally back to court for work after spilling my venti caramel machiato and having to get a replacement. After work I had eight friends over for the most relaxing part of the day, as I served them everyone's favorite homemade mac and cheese. Ahh.
I am working on stuff to get lined up for an upcoming conference, scheduling a bunch of extra medical and dental stuff and working on costumes for the St. Patty's Day Parade this weekend. I promise to be more delightful soon. Entertaining and delightful.