Saturday, March 12, 2016

Learning to Grow

The doctor walked in and said, "I have never seen a growth chart like this, and I am very concerned." It was at that moment that I realized this appointment was not just a routine thing we needed to do in order to move on with our lives.  This was a big deal.  Isaiah and I spent the next hour answering or at least trying to answer, questions about every aspect of his body and how it functions.  Most of the questions, I didn't even know the answers to.  If he was younger, I would have known every answer, but I don't monitor my 9 year old's bodily functions, sleep patterns, energy levels, pain index, brain function, muscle tone, etc. on a daily basis.  I knew his growth was lacking, but we thought, "maybe he is just small."  

Well, the Pediatric Endocrinologist did not think it was just that.  He saw a plummet in his growth chart and his percentiles that were a huge concern for him.  I knew he hadn't grown any the year prior, but he had grown in the last year and that was encouraging.  The problem was that there was a point on his growth chart where the normal growth that he was experiencing stopped.  Instead of continuing on a steady growth pattern, he grew less and less and went from the 90% to the 3%.  As a 9 year old, his bone scan showed an age of 7 years.

Let me stop for a minute here and talk about adoption.  Many might be thinking, well, maybe his birthdate was wrong and he really is just 7.  That would be impossible.  We got him at the age of 2 and Laila was 9 months.  We are pretty confident about his birthdate being correct.  At the age of 2, he was talking A LOT.  There is no way he could have been two years younger than we were told.  He also had an actual government issued birth certificate with an actual birthdate of December 18, 2006.  Usually, if a birthdate is unknown in a case of international adoption, a child will be assigned the birthdate of Jan. 1.  The other factor that makes this tricky is that we have no genetic information other than Laila being his biological sister.  Laila is actually 18 months younger than him and 2-3 inches taller than him.  That is suspect for sure.  

So, on Jan. 5, we began a new journey.  We had many doctor's appointments and tests ahead of us to figure out what was going on in our little guy's body.  Lots of scary possibilities were mentioned along the way.  I was officially scared when I left that office and a bit in shock that we were walking this road.  I even felt guilty that maybe I had missed something and should have seen it sooner.  What if my lack of action resulted in something life threatening for him?  Now, here we are on March 12 with a plan in place and a daily regimen to get his body growing like it should.  

We left the doctor's office with an appointment the following week in Denver.  At this appointment, Isaiah would go through 4-5 hours of testing and blood work to basically investigate every possibility of why he wasn't growing like he should.  
Here we are very early that morning leaving for Denver
 He had to fast from midnight on.  I was really worried about how this would affect him emotionally. Because of his past, and having times where he didn't have food, he tends to freak out if he goes too long without food or feels like he is being denied food.  It is basically like Hangry on steroids.
 Because of all of the blood that had to be drawn, they used an IV for the testing
 He got the comfy seat, recliner with pillows and blankets.  He had my old iPhone to play and movies to watch.  He had to be injected with stuff and had blood drawn multiple times. 
 Over the course of 4 hours, he had about 20 vials of blood taken.
I had prepared him for the fast.  He basically went 14 hours without food.  He did really well with the fasting.  The last hour was hard, but I was hungry, too at that point, so I didn't blame him.  The testing felt long and exhausting.  When asked what he wanted as his first thing to eat after the testing, he said, "Cheetos Puffs."  I got him the biggest bag I could find, all ready to eat when we were done.
 We also got his favorite food for lunch, Panda Express
Then, we waited.  We were told it would be 10 days before we had results.  That was a LONG 10 days.  My mind ran through so many scenarios of what we might be facing.  I just wanted answers and a plan.  We actually got a call on day 8.  The doctor left me a voicemail message explaining that Isaiah was definitely Growth Hormone Deficient.  The results of 3 tests led to this conclusion.  Everything else that they tested came back normal.  Yay!  That ruled out lots of really serious conditions.  BUT, why was he Growth Hormone Deficient.  Once again, we were looking at some pretty scary scenarios.  Before we could begin any kind of growth hormone therapy, they had to do an MRI to rule out things like a tumor on his pituitary.  They needed to see the pituitary gland to see if there was an obvious reason why it was not functioning like it should.  Those results could overrule any growth hormone therapy needed if they revealed a more serious problem.  So, once again my mind went crazy with the possibilities.  Lots of prayers were lifted up asking for a clean MRI.

Can you see him smiling?
 I just have to brag a little now.  This boy is an MRI champ.  At his age, it is sometimes recommended that sedation be used to keep them still for the test.  I was hoping to avoid this for several reasons.  I prepped him over and over again about how important it would be to stay completely still.
 HE DID IT!  
 Even with an injection for contrast halfway through, he held it together "better than many adults"(the tech said).  It was absolutely pitiful holding his hand, watching tears stream down his face while they injected him.  I just wanted to make it all better and know that this was not the beginning of much worse for him medically.  
 3 days later, we got the MRI results.  It was completely NORMAL!!  That means that the only issue we were now dealing with was Growth Hormone Deficiency.  At the beginning, that sounded really overwhelming, but knowing what we could be facing, this diagnosis felt manageable.  The next step was to begin injections.  We discovered that he would need daily injections, 6 days a week, until he is at least 16 years old to give his body what it is not already producing.  WHOA!

We received this at our doorstep, and I suddenly felt overwhelmed again.  
A week ago, Rick, Isaiah, and I headed to Denver again.  This was our 8th doctor's/testing appointment over the last 2 months as we went through this whole process to get to this point.  The first thing the nurse said to him as we walked in was, "Isaiah, it is time for you to learn to grow!"  We have discovered that we may not ever know why his pituitary gland is not working like it should.  It may just be "lazy," but if we don't give his body what it needs, there are a whole slew of other health issues he could have as a result.  It is not just about his height.  It is truly a chronic health condition that needs to be addressed. This was our "Injection Training Day."  
Always the jokester, wearing the fake skin that we used to learn how to give injections with on his forehead.
 After an hour of training, I gave him his first injection.  
We were both a little nervous.
Once again, he did great!  We are now a week into this and he has handled it really well.  I feel like I have a whole new level of education to add to my resume after the last two months.  He is already asking if he has grown.  "I don't think it works that fast, buddy!"  He just wants to be taller than his younger sister. Laila is mourning the fact that it might actually happen!

I think Rick's words sum up how I feel about all of this right now.  "This is just another reason we know why God brought him into our family."  There are so many children in Swaziland without the medical care they need.  Treatable issues go untreated and lead to devastating consequences.  There is no way this would have been discovered if he was still there, and there definitely wouldn't be the treatment he needed.  Just the fact that his growth hormone has to be refrigerated would not be practical when electricity is a luxury that many don't enjoy.

I still feel overwhelmed when I think about how this impacts our daily lives.  This has to become our new normal.  We have to travel with his medicine.  We have to mix it when he needs a new batch.  We have to do this for at least 7 years, maybe longer.  Learning to Grow is not easy, but we will figure this out just like we always do.  I am so thankful to God as we have seen His Hand through this whole process.  I also suspect we may all do some growing on this journey.  It just may be in different ways than our height.

3 comments:

  1. i'm sure there are many reasons why God had you start blogging again...but THIS is one of them!! THIS POST! lincoln isn't growing. hasn't for 2 years. we are starting all kinds of appts trying to figure it out. but i think your end result is what ours will be. thank you so much for sharing this. i am up a lot at night worrying and wondering what i've done wrong...

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  2. I'm so glad you're blogging again! And I'm SOOOO thankful you guys have answers for Isaiah!

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