Category Archives: Medical

Weight Check at 28 Months

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Not a great day today.

Josephine had a weight check today and it was not what I had hoped.

She did not lose weight, but she didn’t gain any either.  In 3 months, Josephine weighs exactly the same…18 lbs, 11 oz.  She did grow 1/2 an inch, up to 32 1/2 inches.

I am so bummed out with this news.  I know I shouldn’t be and I know it will get better, but right now, not feelin’ so hot.

My mom told me not to focus on the negative and worry about the next step later, but I don’t want to.  I don’t have to.

I want to feel what I feel now and I don’t need anyone to tell me not to feel that way.  I know that sounds snotty and insensitive and that’s not how it’s meant to sound, but it does.

I can’t help how I am feeling now and I am not trying to stop it.  I feel like I am letting Josephine down.  I feel like I let myself down.

Working at Weight Watchers, I tell people it’s not the numbers on the scale that matter, it’s how you feel inside and how your clothes fit outside.

But not my little girl.  She needs every ounce she can get.

Yes, she is doing amazing things in therapy and in life right now.  She’s cruising (yep, you read right!), she following simple commands (give me, put the mail in the mailbox), she’s recognizing animals and saying them by name, she’s counting to 5 (or approximating the sounds).

But she’s not gaining weight.

I am scared about what the GI Doc will say…G-Tube.  Night time feedings.  G-Tube.  G-Tube.

We are working so hard to avoid it and I hope it doesn’t go that direction.  Guess we will find out when we see Dr. Sunaryo (GI) and Mitch (Nutritionist).

Until then, guess we will be heading to Cold Stone Creamery every night!

Might as well enjoy this journey any way we can, right?!  Cookie Doughn’t You Want Some here I come!

Forget Picasso! A Budding Michelangel-ina!

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Lauren (our amazing DI) and Daddy had a surpisingly easy time with Josephine and finger painting today.

Because of her hypersensitivity issues, Josephine typically gags at the sight of anything she dislikes or doesn’t know.  It could be food, dolls, crayons or paint.

Taking a chance, Lauren broke out the finger paint and Josephine dove right in!  No hesitation at all.  But both Lauren and Daddy noticed Josephine drooling quite a bit and it seemed to get a bit worse as time went on.

Lauren found out from Kim (the OT goddess) that the drooling is a sensory defense and would soon be followed by gagging or vomiting.  Fortunately for Lauren and Daddy, the gag came soon after the drooling.

But what is so impressive is that Josephine not only dove right in; she tolerated the paint for more than a couple of minutes.

And made Mama the best rainbow ever!

Not the 26 Leads I Was Looking For!

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Now as a Realtor, you can imagine how exciting it is when I get a lead for a listing or a buyer.

Unfortunately, this post is not about those leads.  This is about J-Bean and her tumultuous relationship with the 26 electrodes attached to her head for a 48 hour period!

NOT FUN!

Before Josephine was diagnosed with Tetrasomy 8p Mosaicism, when Josephine was about 9 months old, we went to the neurologist, Dr. Aviva Bojko, to determine the reason for Josephine’s developmental delays.  Dr. Bojko prescribed an ambulatory EEG and a brain MRI to see what was going on.  Let me tell you…the difference a year makes!

The first time around, applying the electrodes was awful.  Josephine screamed and screamed.  But afterwards, she was fine.  I don’t think she was aware of her surroundings and her body, so it was no big deal.

That is NOT the case at 2 years old!  This time she was wonderful when the leads were applied.  Afterwards, at home…screaming, crying, sleepless nights for the hubby (thanks, Sheldon) and lots of daily frustrations for me.

Thankfully, the EEG was removed this morning and we have our Principessa back.  Granted, she is tired and grumpy.  But I will take that over what happened during the last 2 days ANYTIME!

We will have her results on November 8!  Keep those fingers crossed!

Hair Ye! Hair Ye! Josephine is Hair Ball Free!

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Just got word from Dr. Sunaryo – NO HAIR BALL!  At least not that we can see.

HUGE NEWS!!!  No surgery or endoscopy at this time!

I’m in a much better place mentally today than the last post.  But ya know, every once in awhile, a Mama’s gotta get out what’s in her heart!

We are trying to redirect J-Bean’s hair pulling and consumption and as long as we keep an eye on that, we won’t need to worry about the nasty hair ball.

Hair ball, Hair ball, STAY AWAY…Don’t come back ANY day!

Tricho…WHAT???

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Ah.  Where do I begin this?  I guess just blurting this out is the best way to get the info out.

Josephine has been diagnosed with Trichotillomania.  Yup.  Trichotillomania – a genetically linked chronic hair pulling disorder.  Want to know more?  Check out www.trich.org.  It is the best web site available and will give the most detailed information.

How do I feel about this?  What does this mean for Josephine, for us as parents, for us as a family?

I am happy to finally have an answer for WHY Josephine was pulling out her hair.  It’s nothing we could have known about and nothing we could have done to stop her.  From the studies I’ve read (call me the Trich expert of West Orange, NJ!), there is a genetic link, so she was pre-disposed to this disorder, just like her Tet 8p.  Josephine just needed some event or emotion to trigger the pulling.  Her trigger is her frustration and anger.

When I look back, I recognize she has been pulling her hair for at least 6 months.  But it wasn’t until we were in Ohio in August that it all came to a head and she pulled out 5 clumps of hair in one day.

And when I go back even further, I realize Josephine has been obsessed with hair for at least 1 year.  It was a motivator during therapy and a comfort when she was in pain or just needed something to hold.

Now it’s an every day or every other day occurrence and something I have to watch closely.  Josephine pulls when she’s tired and won’t sleep.  Josephine pulls when I leave the room for a very short period of time.  Josephine pulls when she is casually playing on the floor and in a good mood.  It just happens.

I don’t know what to feel or more importantly, I don’t know HOW to explain how I feel.

It sucks.  Flat out.  I feel helpless.  I want to cry.  I want to scream.  But I keep that inside because I want what’s best for my little girl and I redirect that pain and frustration and anger into finding how to help her.

I sit here typing this and feel the emotions stirring up inside and can’t get them out.

We are scheduled to see a therapist who specializes in children with Trich, but that’s not for a couple of weeks.  What are we supposed to do until then?

We try to re-direct her hands when she starts to pull and rub her head to give her the sensation she is seeking by pulling.  But we can’t always catch her.

The other fear that overcomes me is Josephine is EATING her hair, as well as hair of others, including the dog.  This is called trichophagia.

I am nervous about leaving Josephine alone for a split second because it could lead to her finding a piece of hair on the floor, in her crib, on the rug and putting it in her mouth.  By doing this, Josephine could develop a hair ball in her stomach, which could cause additional issues.

We are waiting for results from an X-ray to see if the hair ball is present.  If so, it needs to be removed with scoping or surgery.  But I won’t think about that yet.

I just want Josephine to be a happy and life-loving little girl.  I know she is happy.  I know we are lucky.

I just wish I didn’t feel so alone today.  I know therapy and talking with other parents of kids with Trich will help.

Just wishing it was now.

Weight Check at 2 Years Old!

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I have always said slow and steady wins the race.  Josephine agrees!

J-Bean is now 18 lbs., 11 ounces and 32 inches tall.

She has gained 6 ounces in 2 months.  Again, it’s a step forward, however small it may be.

You may notice the height number stayed the same.  I assure you J-Bean has grown!  She has outgrown her 12 month pants.  So, I am assuming there was a measurement error in July.

Both the GI Doc and the Pediatrician measured the same.

Keep on goin’, GIRL!!!

Hair Today, Gone Tomorrow

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Ah, the life of a mother!  Makes me want to pull out my hair sometimes…

Only this time, my daughter has done it for me.  And it’s her own hair.

While visiting in Ohio for a high school reunion, I received news that my Great Uncle George passed away.  So our plans changed and The Sheldons returned to New Jersey without us gals.  That’s when the trouble began…

It seems continuity and familiarity are a rather big deal to a rather small little girl.  Josephine was all out of sorts and wasn’t comfortable with her surroundings for a longer period of time than expected.  She loves visiting Grammy and Grampy, but she didn’t have HER toys, HER room, HER bed, HER house and it was all too much for her to handle.

The result:  hair pulling.  Large amounts of hair pulling.  One clump here, one clump there.  One day, Josephine had pulled out as many as 5 clumps.  The picture below shows the end result of Josephine’s new do.Great idea for an 80’s party or if you want to be Rhianna for Halloween.  Otherwise, our girl looked like a cancer patient going through chemo.  Very scary to see and hard to take.

Josephine had never had a hair cut and I was so excited about the idea of flowing locks of beauty to brush daily and tie up in cute bows and clips.

Let me tell you…you quickly realize what really matters in life when something like this becomes a concern.  What’s more important?  Pretty hair or the safety and well-being of your child?  You would be surprised to hear my answer.  I was actually struggling with what to do.

I didn’t mind cutting Josephine’s hair, but I didn’t like that I no longer had the choice to do or not to do.  Below is Josephine’s new style.

Cute, yes.  What I wanted for her, no.  But what I want doesn’t matter.  It just doesn’t.  Josephine’s safety and happiness matter.

I can live with that.

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.

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.