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Wednesday, March 14, 2007
The Sweetest Sound
I can't help but smile. My husband and my son laughing for no apparent reason. Each peal of laughter causing another in a chain reaction of happiness.
The quick updates since I'm not in the mood to do anything but smile and laugh along with my boys:
* The eye exam went well...appropriately far-sighted for his chronological age with no apparent issues from his prematurity. Next eye exam: 1 year.
* The Early Intervention office is sending someone out tomorrow to go over paperwork, explain testing procedures, assist in picking a therapy provider to do the testing.
* Meeting for WalkAmerica planning committee (Have you registered to walk yet? Are you sponsoring someone?) tomorrow.
* Leaving tomorrow afternoon for several days to visit the lowercase's grandparents.
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Monday, March 12, 2007
Delayed?
I hate this. I posted back in January about the lowercase taking his first step. What I haven't written is that he kind of quit. Sure every now and then he'll let go and take a few steps...but it's been two months and he still hasn't been able to take more than 5 steps at a time.
He now gets frustrated when we try to hold his hands and walk with him -- most of the time when we try he instantly drops to his knees to begin crawling. On the other hand, he is constantly pulling up to stand, cruising the furniture, and frequently walks behind things (ride-on toys, walking toys, his leap frog music table).
On Friday I gave in and called the county early intervention office. We've been doing evaluation forms from them at home on our own and he's always scored well above the cutoff point in every category. His most recent one, done at 12 months adjusted age (mid-January), had him scoring 55 in gross motor with the cutoff point for delays being 18. So why isn't he walking?
We go to gymboree classes where he is one of two babies who does not yet walk -- the other child is also 7 months younger than him (actually too young for the class she's enrolled in, but nobody asked me). During classes, any activity that involves walking sends him crawling at top speed across the room to a bin full of balls or to the mirrors or tunnels.
I'm expecting a call from EI some time this week to schedule a time for a pair of therapists to come to our house and evaluate my son.
Add to the worries about his gross motor development the fact that he's only in the 4th percentile for weight, my currently intense level of PMS, the fact that many other people I know are having second (or third) babies when my husband refuses to discuss that even as a remote years-away possibility, and my general neurotic personality and you might have a picture of my life at the moment.
I had a breakdown yesterday doing massive amounts of crying, followed by about 10 minutes of laughter and then, as a result of one innocent comment from my husband, another 20 minutes of gut-wrenching sobbing...in the grocery store parking lot.
Oh...and the lowercase is having another eye exam today to see if his prematurity has affected his vision.
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Friday, March 09, 2007
Lowercase loves Sushi!
Just a few quick snaps of the lowercase chowing down on his favorite -- tuna rolls!
He also loves seaweed salad, however, he will only eat it if I feed him with chopsticks. What a ham!
--Mr. W.
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Friday, March 02, 2007
Accidental activism
Earlier this year, Mr. W and I recieved a plaque from the March of Dimes in appreciation for the amount of money that our family team (read: the two of us) raised for last year's WalkAmerica. We also had a letter enclosed asking if our team captain (me) would like to volunteer on the planning committee for this year's walk. Since I'm staying at home and life revolves around the lowercase (story time, trips to the library, gymboree, whatever he needs whenever he needs it), I decided that I could spare the time. In talking to the director of our regional office, she learned that we walked because we're preemie parents -- and asked if we would take on the additional responsibility of being an Ambassador Family. Of course we agreed.
At this week's meeting I was a little disappointed because all of the other committee members had been involved in planning in prior years and agreed to do all of the things they had done last year. Which left me with basically nothing to contribute at this meeting. As we were leaving, the director pulled me aside and said that she'd like for me to speak at a breakfast next week -- to share our story, to give a face to what the March of Dimes' mission is all about. Because I had said during the meeting that I would help in any way necessary, it wasn't something I could turn down even though I HATE public speaking. (Yes, I am a teacher. Yes, when I'm working I do a lot of speaking in front of crowds, but it's entirely different when it's a crowd of 8-10 year olds instead of a crowd full of adults!)
And then today my phone rang. The NICU social worker thought she remembered something in my case history and wanted to know if she was remembering correctly. I've written before that I have some serious medical issues -- all resolved at this point, but that were once incredibly life threatening. The primary issue is that I have a congenital diaphragmatic hernia (essentially, that muscle wasn't developed properly in utero such that on my first breath, all organs from the abdominal cavity were pulled through the hole in the muscle and into the chest cavity filling the space that my lungs needed to function and requiring immediate emergency surgery). Thirty years ago, in many areas (including the one my mom lived in) ultrasounds were not readily available and thus the CDH couldn't be diagnosed until birth. This is something that is now diagnosed at the "big" 20 week ultrasound.
Our social worker called because there are parents who have a diagnosed child (she didn't indicate if they were diagnosed via ultrasound or if the child had been born) who would like to speak to someone who has survived with the condition. I gave her permission to pass my contact information on to them and said that I would be willing to speak to anyone at any time who is faced with this. And then I did some research so that I would have a bit of information about the condition as it affects others -- the survival rates, the prognosis that is generally given.
And the information *isn't* good. Most of what I found revolves around a study conducted in Australia. Upon diagnosis via ultrasound, 33% of parents choose to terminate. Of the remaining pregnancies, some babies are stillborn. There isn't any information about premature babies with CDH (though one article that I read stated that surfactant therapy doesn't improve the prognosis for preemies with CDH). Full-term live births have a morbidity rate between 4o and 62%.
I knew that it was bad...life-threatening. I just somehow thought that since it's diagnosed in utero now...since NICU doctors are prepared for births that are scheduled in advance so that the child can IMMEDIATELY have surgery...I thought it would be better than, essentially, a 50/50 shot.
(As a side note, by the month that I was born in 1977, there had been 13 documented births of children with congenital diaphragmatic hernia. And only 2 of us survived.)
So now I'm trying to figure out what I'll say to that family. That I'm fine? That I'm not medicated in any way and once I was weaned from the pain meds from my surgery at birth that I never was? That I'm active -- able to work out as intensely (or more) as anyone in the gym (you know...before the baby when I had time)? That even the inability to breathe at birth didn't cause any form of brain damage -- that I was a straight A student, that I went to a highly competitive and prestigious private university, that I have a master's degree (for which I never received a grade lower than a B+)? That I have a husband and a child and a normal, typical American life?
My inclination is to tell them just that...to get them to fight with everything they have in them for their child to make it. I keep thinking about how things could have been different if my parents had known about this prior to my birth. How would their doctor have counseled them? What would he have said to them about the option of termination*? And how many of those children who are terminated could have had the same outcome that I have had?
I suppose it is only my responsibility to tell them my story; to answer any questions they have for me about my condition and to refer them back to the doctors, social workers, clergy, or whomever else for statistics and ethics and whatever else as they make decisions about what to do and expect for themselves.
*I don't think, in the US, in the state that my family lives in that termination would have been an option -- I don't think abortions are performed past the first trimester there.
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