When life hands you lemons

When I first stared my blog, I specifically called is a lifestyle blog as opposed to a food blog.  It seems like it’s turning more and more into a food blog, as that’s where my passion lies, however I wanted to have the option to write about whatever is in my heart and on my mind.  So, here I go.  Some of you that are reading this know me well, and some probably not.  So I’ll start by explaining myself a bit.  I’m pretty closed off.  I wouldn’t say I’m unfriendly, but I’m definitely not an open book.  I don’t easily share my feelings with people, even close family and friends, nor do I always tell everyone what’s going on behind closed doors.  I do feel like it’s a bit of a flaw; I often wish I could be more of an open book but it’s not in my nature.  When my mom was diagnosed with cancer in May of 2012, I followed this to a T.  I eventually told my friends what was going on, but I wasn’t good about keeping them up to date, or telling them how I was really feeling about everything.  I didn’t go shouting from the roof top that my mom had cancer.  I have so many regrets about that.  I see my mistakes now.  I truly believe that if I had used the powers of social media earlier in her illness, we could have found better doctors and a better treatment plan.  I can’t change that now, all I can do is look forward.

layla-and-mommy

When I had my daughter, I decided to attempt to be more open about her.  It’s been hard.  But I promised myself that when I started my blog back in February, I wouldn’t hold things back.  I’ll tell anyone and everyone about what’s going on with my daughter health wise, in the off chance that they can somehow help her.

Now, back to my original topic; when life hands you lemons.  We’ve been handed some lemons.  Not the most sour lemons out there.  But still, lemons.  The thing is, when you’re pregnant you envision the most perfect life for your child.  You can’t picture any health issues, behavioral issues, social issues, etc.  And reality is, a lot of kids do have issues.  But no one wants to think their kids might be one of those.  I know it could be worse; it could always be worse.  My daughter is beautiful, healthy and developmentally perfect.  But we’ve still been handed some lemons.  In the form of a growth hormone deficiency.  It’s petty rare, from what google tells me.  But the important thing is that is doesn’t really effect anything but her growth.  But still; how do I come to terms with the fact the my daughter is not growing as fast as she should be?  She might not reach her genetic height potential?  I can tell you it’s not easy.  When she was born, she was big, strong and healthy.  21 inches and 7 pounds 15 ounces to be exact.  That’s a BIG baby – her height put her in the 90th percentile.  I wasn’t expecting her to be so long (and truth be told, she had a bit of a cone head when she came out and lost 1.5 inches by the time she was two weeks old).  But still, she was bigger than a lot of newborns.

 

Everyone told me that babies grow so fast, and to be prepared for that.  And initially she did.  She outgrew newborn clothes by 7 weeks, and stayed strong in the 60th percentile for height and weight at her two month well visit.  I was pleasantly surprised.  I’m 5’4.5″ (Yep, I added the half inch there).  I certainly didn’t expect her to be exceptionally tall.  So 60th percentile – woohoo!  She was growing like a weed on her diet that consisted soley of breastmilk.  I must have some super powers!  She was developing wonderfully, hitting all of her milestones right when she should, or before.  Although…she didn’t seem to be outgrowing her 3 month clothes as quickly as I thought she would.  But I wasn’t worried, yet.  When she was around 5.5 months old, she started crawling.  I have this awesome video of her rocking back and forth trying to crawl and she was wearing 3 month clothes.  I thought to myself, my tiny little totally advanced rockstar.

Layla

At her 6 month visit, she had fallen to the 25th percentile.  At the time, I wasn’t really thinking about that because she had literally had a cold/RSV/respiratory infections since she started daycare at 3 months so we were just focused on her being able to breathe at that point.  After a 5 night hospital stay during Christmas (yes, we spent Baby’s First Christmas in the hospital) due to a nasty bout with RSV, she was diagnosed with asthma.  I can’t tell you the relief we felt.  For three months, we had been taking her to the doctor weekly, wondering why she was up all night long coughing.  We didn’t think it was normal, but we never got any answers – just more steroids and antibiotics.  By January, after a month on an inhaler and a medication, she went back to daycare and was able to handle the viruses so much better.  So, asthma.  Ok, we can deal with that.  Lots of kids have asthma.  We got this!  Then at her 9 month well visit, she fell to the 15th percentile.  She was still fitting very easily into her 6 month clothes.  Kids in her daycare class were growing faster than her, and she still had no teeth.  I was officially worried.  Her doctor wasn’t – she was still on the growth curve so he didn’t see any reason for concern.  I couldn’t help but notice how much smaller she was than other kids though.  She started walking before she turned 9 months.  Imagine, you’re out and you see a baby the size of a 6 month old walking??  We got lots of stares and questions.  One person even asked if she was a premie, because they couldn’t believe how small she was compared to their “giant” of a baby (their words not mine!).

This top, purchased by her fashionista Auntie and Godmother, was supposed to her  patriotic Memorial Day and 4th of July top.  At almost a year old, the 12 month top fit her like a dress.

Layla

Right before her 12 month visit, I was in New York for my brothers wedding.  I was able to meet up with a dear friend of mine and see her adorable 2.5 year old son and 14 month old daughter.  Reality check.  Her daughter, only two months older than Layla looked at least 6 months to a year older.  She looked like a normal toddler.  She was taller, leaner, and had a lot more hair and teeth than Layla.  Layla was shorter, with baby fine hair, just two teeth and a big ole round baby belly.  My husband and I left their house knowing that something was going on with Layla.

Layla

Pictured above at her 12 month appointment (in a 6 month onesie), when she fell to the 1 percentile.  Finally, the pediatrician recommended we see a specialist.  What kind of specialist do you see for growth issues?  An endocrinologist.  So, we started the excruciatingly long process.  You know how that goes.  It takes 6-8 weeks just to get an appointment.  So in mid-August, we took our now 14 month old to the pediatric endocrinologist.  This doctor didn’t seem to take us very seriously.  She was very confident that Layla was perfect, and didn’t really take the time to explain any of the things they were testing her for.  They took some blood, and over the next two weeks I got email notifications when different test results came in.  Everything was coming back A-ok – relief!  Until the last test, her growth hormone, came back low.  The doctor didn’t even have the decency to call us to explain the test results.  We had no idea what that meant, but if I’m being honest with myself it was what I suspected after my (numerous) late night google searches.  After an angry call to the endocrinologists office the next day, I finally got a call back from the doctor.  Her take was that since one of her growth hormone markers came back low and one came back normal, that we should just play the wait and see game.  Sorry, no.  My husband and I were NOT a fan of this plan.  We wanted to know what was going on with our daughter.  We insisted on the next step of testing.

So, a month later, we left our house at 6:30 in the morning with a sleeping baby, and headed to San Antonio for our 7:30 appointment.  Layla had to fast until the test was over (well this is going to be fun!).  She was really into sign language by now, so when she was signing hungry and we weren’t allowed to give her anything – well lets just say my heart broke in half.  The doctor came in before the test to see if we still really wanted to do it.  It was now 9:00, because they just couldn’t seem to get moving that day.  Umm, yes lady.  We want the test.  She was still convinced everything was fine, but she did allow us make the decision.  Since she didn’t think there was anything wrong with her, she still didn’t take much time to explain growth hormone deficiencies or the test we were about to do.  The test was called a growth hormone stimulation test; it involved giving her medicine to stimulate her pituitary gland to produce growth hormone followed by four finger pricks to test her growth hormone levels (one prick was done before the medicine as a baseline).  When they said finger prick, we thought, ok, we got this.  She’s had gotten plenty of finger pricks before.  They usually resulted in 30 seconds or less of crying.  What they failed to mention was that the so-called finger prick was actually a finger prick followed by ten minutes of squeezing her finger to get enough blood out for the vial.  And they had to do that four times.  Pure torture.  First stim test picture below.

Layla

We were anxious to get the test results and my gut instinct as a mom told me she was going to fail the test.  The next day the doctors office called and confirmed that.  We had to go in for a second test, to ensure the results were not a false positive.

About 6 weeks later, we had the second test and she failed again.  So that was that.  She was growth hormone deficient.  Part of me felt relief, to know that my gut instinct was right and that it was something that was treatable (it could have been a wide array of conditions and not all are treatable), the other part of me was sad; so sad for my baby girl.  The thing is, I know, it could be worse.  I see all kinds of heartbreaking stories across my facebook feed of babies and children dealing with much MUCH worse things, things that are life threatening, things that are changing the quality of their life.  But still.  I envisioned this perfect life for her.  And I feel like that’s being shattered.  Life is hard for kids these days.  Bullying is so much worse than when I was a kid.  I just don’t want her to have anything that could contribute to her feeling sadness or pain, ever.  And now she has this condition, that could lead to bullying down the line.  I want to give her the most perfect life I can, and now, against my will, I’m losing that.  How do you face that, as a parent?  When the vision you had for your child is falling to pieces, right in front of your eyes?

Second stim test.  My poor baby.

Layla

The next step is an MRI, to rule out anything in the brain that could be causing her growth issues.  We do that in January, then visit the endocrinologist every 6 months to track her growth.  Sometime between the age of 2 and 3, they will do a bone age study.  This is an x-ray of her hand which they compare to standard x-ray images of other children.  Let’s say her bone age is 6 months or a year behind her actual age, that means she might be a late bloomer.  If her bone age is on track with her age, that means that her slow growth will likely remain slow.  At that point we, as parents, will need to make a decision on whether or not to start treatment.  The treatment plan is growth hormone injections, 6 days a week.  Once we start the injections, she needs them until she is done growing.  So, this is no light decision.  This is a decision that we have to make for her that will last well into her teen years.  I am worried sick that we will make the wrong decision, that the treatment won’t work, that the injections will cause her pain or traumatize her, the long term effects of the treatment plan.  I’m worried about the fact that everywhere we go for 10-15 years will involve packing growth hormone injections and administering them every night.  Add honestly?  I’m worried that insurance could at some point deny coverage, and we will be unable to afford the astronomical costs of treatment.  I’m worried about the costs that we will still have to face, even with insurance (co-pays, deductibles, out of pocket max).  I’m worried about the extra time off from work that we will have to take, to take her to regular visits to her endocrinologist.

Isn’t it ironic?  I worked out my entire pregnancy, ate organic as much as possible, exclusively breastfed her until she was 6 months old, then slowly introduced solids (all organic, all healthy).  When she was a year, I started introducing milk (organic of course – no added growth hormones in my babies milk).  And now this.  I feel like I’ve done everything right, and she is still going to face this diagnoses.

Pictured below at 16 months, happy and healthy as can be.  She is wearing a 6-12 month dress for reference (and has room to grow into it).

Layla 16 months old

So there’s our lemons.  The perfect life I envisioned for my sweet little (surprise) girl in those first moments that I met her is gone.  I still have hope.  I know everything will work out.  Here’s what I want for her.  I want her to grow up happy and healthy.  I want her to be polite and respectful.  I want her to have passion and drive.  I want her to do good things.  Most importantly, I want her to have memories of a childhood that she can cherish forever.  I don’t want those memories to include pain, or feeling different than other kids.  I don’t want her to be bullied, ever.  Is that too much to ask?

For more information on growth hormone deficiency, visit NORD, the national organization for rare diseases or the Human Growth Foundation.

 

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