Thursday, May 05, 2011

More Questions: Part 2


Sorry for the radio silence, it's been a crazy few days.  

My next two questions are Lamp related and so I'll answer them together.  They're from Melanie and Kiki.  First up Melanie who asks:      


1. With all the extra care Lamp will require, have you wondered if you'll be too stretched for more children?

2. Did the doctor's ever figure out if her condition was just random or if there is a genetic cause?


(And by the way, Hi Melanie!  Good to see you...hope you and your cute family is doing well!)  

And Kiki asks:  

I do want to know about how Lamp's care will be in San Antonio. Have you found a doctor that will be good enough? Her therapies, will they be continued? How are the tube feedings going? Is Lamp sleeping better? Is she growing as expected? 


As far as more kids go no, we don't feel as though we'll be too stretched with Lamp.  I did worry about this when I was pregnant, and occasionally still do, but really she doesn't take that much extra anything.  In fact, the amazing thing about Lamp is how pro-baby she's made me.  I know I've proclaimed far and wide that I'm just not a 'baby' mom and that I love it when my kids are a little older, a little more independent and interactive.  But Lamp has smashed that self-made stereotype into teeny tiny pieces.  I look at her and think, Why would I not always want a baby around?  And then I think, Wait a minute, who said that?  For a while when I was going through post-partum depression I was swearing up and down that I could never do this again and we were done.  Done, done, done!  Then when I got out of the fog, I started to think...well maybe not done-done.  And now I think we definitely would like at least one more baby.  Of course we've also learned with Lamp that these things are out of our hands, so while we hope for another kiddo, we'll see what the Lord has in store for us.  

And as far as her condition, it's believed to be a random genetic mutation.  Which boils down to the fact that the chances of it happening again are pretty slim.  This sorta leads into Kiki's questions about Lamp's care in San Antonio...and the answer to those questions is I don't know yet.  We have referrals from our Dr.'s and therapists, but I'm not sure what to expect.  I really hope her therapy continues, especially as she's getting older and will be wanting to be more mobile soon.  When we go to see the our Dr. in orthopedics it's a pretty non-invasive, broad look-over and quick review of how she's doing and what's on the horizon.  They keep tabs on her and we discuss future possibilities, but that's pretty much it.  It's in our OT and PT (occupational and physical therapy) where the rubber meets the road as far as actually helping Lamp figure things out and seeing her improvement  It's the therapy that has helped her learn to sit, find different ways to play and even...


feed herself!  If you can't tell, that's what she's doing in the picture above.
  We don't really practice this at home much because it's hard to find the time, it's still rather early etc, but look at that!  This picture is a few weeks old too--so this is my 9 month old feeding herself with her spoon!  Did your head just explode?  (I'll have to do a separate post on some of the things I've made for Lamp like that arm-band in the picture).  So while I don't know what to expect yet, I really hope we continue and find some great therapists.

And finally...the g-tube.  The blessed, blessed g-tube.  It has made a WORLD of difference.  B and I often joke that in the future all children will be fed with g-tubes.  Before the g-tube her night feedings went like this:

  5:30/6 put Lamp to bed  
6/6:30--Feed Lamp
8:30/9--Feed Lamp again
10:30/11:00--As we're getting ready for bed, feed Lamp again
2:00/3:00--Feed Lamp.
5:30/6--Feed Lamp.

Yes she was waking up 4-5 times a night!  We had to feed her 2-3 times before we went to bed and 1-2 times after.  It was exhausting to say the least...and the day feedings were just as tiring.  Now she goes to bed and stays asleep like the sleeping champ she is.  I usually feed her once the whole night!  Like today I just feed her at 6:00 am and that was it!  I still get excited over this.  Of course she still has the occasional bad night, but it has improved a bizillion percent.  For all the trouble we've had with the g-tube it has been our saving grace. And yes she's growing well.  She's still on the small side seeing how she's 10 months old and has just moved on to size 3 month clothing.  And you know the charts that tell you if your baby is in the 50th or 70th percentile?  Well Lamp hasn't even made it onto the charts.  She's in the less than 1 percentile.  But she's growing on her own curve and following that curve well...so it's good.  

Thanks again for your questions.  As you know I love talking about Lamp just as I love talking Princess Sparkle Pants.  Not only do I "not mind" getting questions about Lamp and her condition, I welcome them and I think most parents with special needs kids do too.  It's the best opportunity to educate and close the gap that tells people she's different and open the gap that says, oh...she's not that different.  Especially with other children.  Occasionally a kid will ask a question or look at Lamp with that curious look and their parents try to hush them up or tell them not to stare.  But I always tell them it's OK!  I want kids to ask, I don't want them left to question and wonder on their own and feeling awkward or strange about that baby with a missing arm.  I want kids to talk to her, ask me questions, touch her arm or hand, and in general see that she's more alike than different.   

Thanks again everyone!  
    

6 comments:

  1. Linda P.9:54 AM

    Thanks so much for sharing with us, Miggy!

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  2. I know your moving soon, but I was wondering if Lamp qualified for your state's long term care program? we're in AZ, but Isabelle just qualified in Feb when she was diagnosed and it's been amazing how much its changed our life. She has therapy 6 times a week, and LTC picks up the extra cost can we can get therapists to come to our home. It picks up our co-pays and she gets respite care, which has been amazing. At first I was worried about how it would be to have someone in our home, helping with Izzy, but after interviewing and picking someone, its been amazing. She gets 60 hours a month and the state pays for it. I can run errends or do things with my son, or jsut have an extra set of hands to help while I'm cooking dinner or whatever. If Lamp qualifies, it really is an amazing program and helps so much.

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  3. whoops, i left that last comment under my husbands name.

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  4. Wow! Feeding herself! Extraordinary! I love reading your blog, Miggy! --Melanie VDG

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  5. I'm seriously about to cry, that is so great that she can fee herself. By the way, my 16 month old can hardly do that, so she's rocking it!

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  6. Hooray for you getting some sleep! And for Lamp being such a good sleeper! A major victory for any parent (& one I'm still just-barely starting to celebrate with my 8 month old).

    She is such a beautiful little girl.

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