Yearly Archives: 2010

New Love of Hair Pulling

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On our way to Ohio, we stopped at McDonalds (August 2010)

We are en route to Ohio–stopped at McDonalds and thought I’d write about Josephine’s latest love…hair pulling (only on the right side). It didn’t seem like an issue until the last week and a half when the hair on the left side of her head was noticeably thicker. I would offer her my hair, but (being mostly bald) she isn’t able to get a grip:)

She seems to do this mostly when she’s frustrated–and probably not able to truly communicate her emotions. So, whenever she does it, we try to acknowledge that she’s frustrated. Not sure if this is just a phase or if it will (hopefully not) develop into a lasting habit.

1, 2, 3 CRAWL!

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I type this post with excitement in my heart and tears in my eyes.

Our little girl CRAWLED for the first time today!

As you will see and hear below, it’s not the typical first timer crawl – it has crying and frustration and anger – and I couldn’t love it more.

Josephine was starting her PT session and Lana wanted to tape her back with Kinesio tape (which helps give more input so Josephine can sit straight up instead of sitting back on her sacrum bone – http://www.kinesiotaping.com/physiological-effects.php).

Apparently, Josephine was not thrilled with that idea and wanted Mama instead.

She got into quadruped and spontaneously started to crawl toward me.  Both Lana and I were speechless.  Hand went over my mouth and tears ran down my cheeks.  Our little girl crawled 2 feet!

This video is a few minutes after that event I will vividly remember forever.  It’s days like today that make me happy to have Josephine home with me and not in day care.

What more can a mom ask for…WATCH!
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Am I Blue?!

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I learn something new every day with Josephine.

Daddy and Josephine were swimming nicely in the pool at Sheldon’s cousin’s house.  Josephine was kicking and having a great time.  It was a nice late afternoon, I’d say around 80 degrees.  The water temperature was 79 degrees.

After about 30 minutes, give or take a few, Josephine was ready to get out of the pool.  I dried her off and set her down to play on the deck.

That’s where the story should end…but it doesn’t.

Suddenly, I noticed Josephine’s fingers, nails, hands, feet and toes were a cool, stormy blue color!  WHAT???  Josephine was acting fine.  Energetic and playful.  But woah…BLUE?

I have to say I am proud that I didn’t over-react.  I could have, but what would that have done?  Freaked her out and freaked out those around me.

I quickly realized, as did Sheldon’s aunts, Josephine’s body temperature was way low.  We took off her bathing suit and warmed her up with dry towels and blankets.

After about 20 minutes, the pink tone started to come back and I began to relax.

Sure, it all makes sense…NOW.  But at the time, to see your baby girl in that state, was very scary.

Of course I called Dr. Owens to ask what this means.

The good news is it doesn’t appear to have anything to do with her heart or circulation.

The bad news is she can’t be in the water for more than 5 minutes at a time, unless the water temperature and outside temperature are at 98.6 or more.

Our 18 pound princess has virtually no body fat, so she can’t be insulated from the cold, mainly when submerged in water.  Dr. Owens said we can also try a wet suit to better insulate the body, but to me, taking her in and out of the water is less stressful and less difficult for Josephine.

I tell ya…this kid is teaching me more than I imagined I could or would know.

Amazing.  Josephine is amazing.

Weight Check at 22.5 Months

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I’ve been a little concerned about Josephine’s growth lately, so I scheduled a weight and length check for today.

According to Dr. Owens, Josephine is moving right along.

Josephine is 18 lbs, .5 ounces (hey, every 1/2 ounce counts!) and 32 inches long.  Following her own curve nicely.

That’s a bit of weight off my shoulders, at least for now.

The Shortest Distance

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I need to start off this entry by saying how important it is to share this journey with everyone I know.  You never know what can happen when you are comfortable and open enough to talk about Tetrasomy 8p and Agenesis of the Corpus Callosum (ACC).

I had the most amazing time with my family this past weekend.  Yes, it was great seeing and spending time with family we don’t get to see often.

But the best part came after everyone left.

My cousin, Micah, and his wife, Jackie, are interpreters for the deaf.  I don’t even know how we got on the subject, but we quickly started talking about verbal processing, auditory processing and visual processing and specifically how the brain plays a part in each.

We have been struggling with how to get Josephine to communicate because every time she seems to get something, she loses it when it’s not practiced for some time.  I believe this is a result of the ACC.   I shared my thoughts with Micah and he agreed.

Apparently, the part of the brain that processes the verbal aspect is in a different location from the part that processes the auditory and visual aspects.  Because Josephine is missing that connection between the right and left brain, the verbal process takes much longer to communicate with the other two processes.  However, the auditory area and the visual area are on the same side of the brain, which allows the communication to happen faster.

This is important to understand because it made me realize how vital sign language is to Josephine.

When Jackie was playing and signing with Josephine, Josephine’s face lit up and she was very attentive.  When Jackie stopped signing and playing, Josephine looked her in the eye and signed “more”.  No prompting.  Josephine knew what to do and how to get what she wanted.

I have now submerged myself in sign language.  I even have an app on my phone that I can turn to if I need a sign I can’t remember.  And it has already come in handy.

Since we have started to use sign language regularly, I notice more peace in Josephine.  Seriously.  It’s like she’s soaking it all in and getting it.  Getting it in pieces, but getting it.

We are also implementing pictures of familiar items.  We are signing the word, showing the picture and saying the word verbally.  Again, Josephine is starting to identify things more and more.

Sometimes it all gets a bit tedious.  Sometimes I just want to sit and cry or sit and fume or sit and sit.

But I quickly realize it is worth all this work right now.  To be able to give the world to my daughter.  A little extra work for such a big reward is worth every tear I want to cry or every swear word I want to shout or every silent moment I want to steal.

Just looking at my little girl…I know it’s worth it.

Plop, Plop, Fizz, Fizz…

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If it were only as easy as giving Josephine TUMS to solve her reflux issue.  Alas, she is now on an OTC med (Nizatidine, generic for Axid) to stop the writhing pain she goes through with her bouts of reflux.

The visit to Dr. Sunaryo (Pediatric Gastrointerologist) was uneventful, fortunately.  Based on our description of Josephine’s symptoms, Dr. Sunaryo felt invasive testing would prove the same diagnosis, so why do tests to make Josephine more uncomfortable.  No noise from the peanut gallery on our end.

Josephine’s reflux issue comes and goes and Dr. Sunaryo said that is normal.  Some people get it all the time, while others are intermittent.  We expect her to be on this medication for many months.

I have expected this result for some time now, especially after talking with the moms of the other Tet 8p kids.  All 3 of them have reflux issues, although more severe.

So now, we are off onto another adventure in the world of special needs…I could use a vacation.