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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.

   [ posted  @ 7:47 PM ] [ Post a Comment ] [ View Comments (0) ]
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   Monday, March 12, 2007  


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.

   [ posted  @ 9:55 AM ] [ Post a Comment ] [ View Comments (8) ]
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  Comments about my post, "Delayed?":
Take heart, there is a great chance that lowercase will catch up! My very best friend delivered her first two sons early due to hormonal stagnant migraines. Both boys were below the range for gross motor development and speech. One son is now 6 and the other is 4 and you know...they are both walking and talking.

Having premature babies is challenging-and you could face more hardships-but because you care so deeply about lowercase's development he has a fighting chance!
was on time, still didn't walk until he was almost 16 months. He just didn't want to, crawling was it for him. Then one day he just figured, why not, and off he went.

I wouldn't be worried about him being delayed with it.
Oh, it's so hard not to worry about all of this stuff. Our son (full-term) didn't walk late, either. I think he just found crawling to be more convenient/faster for him.

I was so frustrated by this -- also during his gym class -- and now I'm totally paranoid about his speech/language development. There's always something else to worry about.

I hope the appt with the EI goes well.
Hang in there. It sounds like he is just comfortable crawling. Since he can walk along furniture, it does not sound like anything is structural is preventing him from walking.

Has he ever been diagnosed with sensory issues (sensory integration dysfunction)? Some sensory kids have trouble walking because they cannot figure out where their body is in relation to space.

My daughter was born at 25.5 weeks. She took her first steps at 15 months actual age but then decided that she could crawl faster. She didn't start actively walking until she was 17 months actual age. She had/has severe sensory issues so she had trouble walking for quite some time.

She is 8 years old now and walks/runs just fine.
This infertility-plus-preemie racket is a really, really tough one, and I am so sorry you're feeling the weight of it. I think we have been in very similar places, so if you'd like to vent, please, please just drop an e-mail. You are so not alone.
My preemies walked at a pretty standard time, but I'm concerned about the other side of the coin: talking. They just don't do it. They will be two next month, and they *might* say ten words between them. I'm sure it's true that there's always something to worry about, for any parent, but it's all so magnified for preemie parents. Anyway, I'm thinking of you.
My IVF twins were 5 weeks early and just started walking at 15 months 1 week...not that I was counting!

It was such a process, I thought they'd just get up and walk one day! They did the whole couple of steps then crawl thing, then one day they just decided (on the same weekend!) that walking would be the first choice.

I think it took about 2 months from the first steps to walking. Take heart, it happens differently for everyone. As with the others, speech is my next worry!
Sorry you're having a bad time of it right now. I have twins who were born at 34 weeks, which you would think would mean that they're pretty much "normal," but they've had various problems and been late with most things. The twin who has had more problems just started to walk by himself yesterday, at 16+ months. This morning he was still doing a lot of crawling, but I think we're getting there. There is nothing wrong with calling in for an evaluation. He is pulling himself up, cruising, etc., and all of those things lead to walking. Chances are that they will either tell you he's on the right track or give you specific ways and tools to help him learn. Oh, and my son is only in the 5th percentile for weight too. Take care.

   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.

   [ posted  @ 11:15 PM ] [ Post a Comment ] [ View Comments (3) ]
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  Comments about my post, "Lowercase loves Sushi!":
wow, the hair!
Holy cow--he's gotten so big!! (okay, they do do that, I know) It's been so long since you shared him here with us and wow!! He's such a big cutie :-)

My J likes tuna sushi on the rice bed dipped in this incredibly spicy soy sauce/wasabi mix my husband makes--good taste that kid!
Get a haircut, hippie!

Next u/s on March 20 -- check our site on March 21 for the deets. ;)

   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.

   [ posted  @ 8:45 PM ] [ Post a Comment ] [ View Comments (1) ]
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  Comments about my post, "Accidental activism":
I've been called upon to counsel people and tell my story in a number of ways. It's rarely easy, but always good.

I think you're right to tell this couple exactly what you described. If I knew there was a chance, I think I'd go forward and hope for the best, while knowing that that may not be the outcome. If the alternative is a relatively quick death (as opposed to other anomolies or disorders that don't lead to death, but rather a lifetime of braindeath or pain), I think I would take the chance. But that's just me.

You can't go wrong by speaking the truth. I hope fortune smiles on them.

Oh - and, trust me, if you can speak in front of elementary school kids, you'll find adults FAR easier.

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