Bittersweet doesn't get better than this!!!

Emu has been on his daily growth hormone shots for almost a month now! 

A few weeks ago, we finally made him his "Growth Board" that I promised him.  Initially, it was going to be just for him, but as it ended up...we are using it to keep track of everyone's growth (we are still debating growth hormone therapy for Duckling).

Our first measurement was on June 23.  Emu was so excited to about making his Growth Chart and he couldn't wait to get his first measurement marked on his board!  He stood so proud, really having no clue the importance of this new piece of wood!

Just 5 days later...we measured him again and to our surprise...he had actually grown in just those 5 days and not just a little either!  Concerned that he may actually be growing too fast...I put a call into his Endocrinologist, but never did get an answer.  A few days later, we found ourselves in the Pediatricians office with our crazy bird Macaw (she has always had a facination with putting things in her ears).  While we were there, I asked the Dr. to measure Emu, as I wasn't too confident in our home measurement.  Amazingly, he had grown a full 2 INCHES since his last visit there!   

Today, just 10 days after we first started measuring him, we decided to have a little fun and see if he had grown again.  He has gained another 1mm since 5 days ago when we first measured him!  He is growing 1mm every 5 days!!  Today, he has reached exactly 3/4 of an inch since we started measuring him!  He has been on his shots for 25 days and at a rate of 1mm every 5 days that equals the 2 inches that he has grown since his Dr. had last seen him. 

1mm every 5 days!!!

 

WOW!!!!! 2 INCHES in just 25 days.  This little guy had only grown 3/4 of an inch in 2 1/2 years on his own.  Bittersweet doesn't get any better than this!  I am amazed and I now know that I DID make the right decision!  Seeing that this has proven successful for Emu, now, the Peditrician is pushing growth hormone for Duckling as well so we will be heading back to the Endocrinologist for a possible growth hormone study for her (I had previously declined the test for her, as her case was different than Emu's).

Success...in our house...sometimes it is measured!
:D

Bittersweet!

Bittersweet!

There is no better word to describe today!

Unless you use the word "chance".

Today, is the start of a chance for Emu.  A chance to grow.  A chance to defy one of the ways he was intended to be.  It's such a bittersweet day!  As I look into his eyes, I see a boy who is clueless about what is really going on....a priceless little man, who looks up to me and trusts that I will always do what's best for him.  Always looking out for his best interest, some decisions are a no brainer...other decisions take a little more thought.  This was one of those decisions. 

What parent doesn't look at their children in disbelief of how fast they are growing up.  In the midst of one of the many moments that take my breath away, I've often asked my children "Do you have to grow so fast, can't you just stay little for mommy"?  I think all of us parents have thought that one time or another, but I never really expected that my children wouldn't grow the way they should.

If it weren't for him not outgrowing clothes...I don't think I would really notice that Emu wasn't growing.  Unless maybe he was standing next to a sibling or maybe his younger cousin.  You never really "notice" you own child growing the way you would notice someone else's child who you haven't seen for a while.  A few months can go by and when you see a friends child, you can quickly notice how much they've grown since the last time you saw them.  You just never really can tell how much your own child has grown on a day to day basis.  The same rule applies when they aren't growing.  You just don't really notice. 

Emu is 4 1/2 years old.  This is his third summer wearing the same clothes...he wears a size 18 -24 months.  It's hard to believe this little guy used to be such a chunky monkey when he had just turned 1 year old.  At 2 years old...he stopped growing.  It was discovered at his 3 year check up that he hadn't grown since he was 2, but after being monitored for a year, then undergoing testing/diagnosis...he has finally reached treatment time.  His treatment comes with a hefty pricetag, one that insurance companies do not cover...but we are blessed with a healthcare plan that covers the entire cost of his medication...more than $250 per day.  His own "liquid gold".

We've talked briefly about his special "Superman Stamp" that he'll soon be getting that will make him grow big and strong like Superman!  Somehow, in his own smart little mind...he has figured out that his "stampers" will be needles.  Maybe it was the purchase of the two boxes of bandaids that he got to pick out the other day.  He is really much too smart for his own good, you just can't pull one over on this little guy! 

We went out and got some supplies to make a chart and to decorate his "delivery pen", sharps container and possibly his Medpack too.  Of course there were no Superman stickers to be found, but he happily settled for Spiderman stickers to complete is project.  He eagerly awaited all of his medical supplies to come and when the packages arrived, you would have thought it was Christmas!  As he tore into everything he pulled out the two boxes of needles from the box.  He picks one of them up and says "Oh, these are my needles", as if it was something that did not upset him.  Curious, he wanted to see one, so I opened one so that he could look at it.  They come in a protective cap and the cap will not come off unless the needle is screwed onto his delivery pen, so it was safe to allow him to explore it a bit.  He decided to torment his brothers and sisters, teasing them as if he was going to get them with it.  It was all in good safe fun and it was great to see that he was not afraid of it.  Emu is one lucky little boy who has two awesome big brothers who love him so very much!  Despite the 90 degree tempuratures, they arranged for a special visit from Spiderman and Batman to help him make his chart.

Decorating his sharps container

His medpak containing all of his supplies and his chart

Today, his nurse came and trained me on how to give him his shots and the proper care of his supplies and medication.  When she arrived, he excitedly grabbed his backpack as if this was the moment he had been waiting for...even the nurse was impressed and surprised to see a little boy so anxious and excited!  Just as soon as she got her training supplies out....he took off!  I gave him a few minutes, thinking maybe he ran in search of something to show his nurse.  I decided that I better go see what he was doing...and there he was...on the far corner of the top bunk.  Refusing to come down, I had to send Hawk up to pass him to me...and down the steps I went with a kicking, screaming child.  Now, this is more of what I had expected!  These past few days, I was thinking "wow, my kids never cease to amaze me"...because I couldn't believe how well he seemed to be dealing with everything.  Today, I was thinking "wow, my kids can really fool me"!

So, after one practice round, it was time for the real deal!  I was so nervous of hurting my precious boy...tough love sure does suck!  The nurse was surprised by his strength...but with two of us holding him down...I was able to shoot the little bugger in the thigh.  He didn't cry long and was easily distracted soon after his injection.  He was able to compose himself just in time to dispose of his needle all by himself.  He put his first sticker on his chart then, off he went with his prize from the $1 store that was worth a million bucks to him.  He has already picked out his bandaid for his next shot but, I'm sure this road will get rougher before it gets better.

Emu has been through so much the last 6 months and now, this will be part of his nightly routine.  Someday, he won't remember a time when he didn't have to have a shot everyday and hopefully, someday he will thank me for the difficult choice I had to make to put him through all of this! 

I'm so proud of my little Superhero, he is so brave!

 

Decision Day

Today was a huge decision day.  Emu went back to his Endocrinologist.  We already had the test results and his diagnosis, so that was no surprise.  Today, was a day of seeing the charts, hearing the facts and getting a thorough explaination of Emu's growth.

Basically...according to the height of myself and Emu's "sperm donor", Emu's projected height is somewhere between 5'4" and 5'6".  However, according to Emu's personal growth pattern, his estimated height is somewhere between 5'2" and 5'4" and this is if ONLY he continues to grow at the same rate he is now.  They know from his bone age scan, that he will NEVER hit a growth spurt like "normal" kids and they don't expect him continue to grow at the same rate he is now...so, it is likely that he may only be at best 5'2" and possibly even shorter than that.  We know that he is growth hormone deficient, but he doesn't qualify as having a growth hormone deficiency.  He still qualifies to receive growth hormone therapy, but it is not guaranteed to work as well as it would if he were in the deficiency category.  The hope is that with growth hormone therapy we can get him to a height of 5'6" but the chances are very slim and the odds are very against him.  To receive the maximum benefit of growth hormone therapy, he would need to recieve the hormone for 8-10 years. 

Growth hormone therapy comes with a hefty price tag, which is why insurance companies generally will not pay for the treatment.  At $250 per injection ($1,750 per week or $91,250 per year) drug companies will often eat this cost in hopes that after treatment appears successful for a particular patient, the insurance company will then cover the course of the remaining treatment. 

After the Dr. gave all of the information a few minutes to "sink" in, she suggested that maybe it would be better to go home and "talk to dad" about it.  I immediately said "dad just left"...then I corrected myself and said "well,  dad is in prison...I mean..." uggh, I thought I was going to cry.  "Can you bounce opinions off of a friend or grandma?  You don't have to make a decision today".  "No, it's ok...none of them know anything about it anyways".

I was most worried about the side effects some of which seemed very serious.  So, we spent some time discussing them and she really put my mind at ease.  Diabetes was one of the main things I was concerned about.  She explained that any of the side effects are just that...a side effect, not an actual developed health condition.  The main side effects are pressure behind the eyes, migraines w/ vomitting, leg pain and diabetes.  These would all immediately stop once the medication is stopped.  Another main side effect is that his hip could repeatedly come out of it's socket...she reassured me that this is extrememly rare and that in 25 years, she has only seen this once.

I hated that Falcon wasn't there.  With no one to veer my opinion and having the weight of the decision on only my shoulders, I decided it best to try and fail rather than not try to do anything at all.  At best he could be 5'6" and at worst he could be 5'2" but I won't know if he would have been any taller, if I didn't try.

It will take a month to get everything approved, then a nurse will come and train me how to give him his injections.  The doctor warns that the initial stage of adjustment is extremely overwhelming but that if we can make it past that, then his shots will just become a daily part of his routine and soon he will know no different.

I hope that I made the right decision...but I guess I don't have anyone to argue me that I didn't.

Emu's Diagnosis Day

"Idopathic Short Stature"....the phone call came early this morning, what a way to start our day.  I dreaded the phone call, but yet I was so anxious for it to come.  I knew I would be dissapointed, no matter what the answer was going to be, and yes, I think I am!

Idopathic Short Stature, what does that mean?  It means they have to call it something.  It means that the Endocrinologist, has absolutely no hormonal explanation for his lack of growth, from her standpoint.

I wrote down everything as she was speaking to me.  My mind was in a whirlwind, so it was difficult to ask questions.  I felt like I couldn't think very clearly.  I did ask some questions, but now I am filled with so much more.  I am totally confused.  She said that Emu IS Growth Hormone Deficient, but he does not meet the criteria for a GHD diagnosis.  She said his growth hormone level is 12.5.  When I asked what it "should" be, she said anything greater than 10 is considered normal.  She then went on to read all of the levels from each blood draw.  8.4, 5, 12.5, 2.6 & 7.5...so now I am confused.  Do they not average those, because his average would be 7.2.  I'm assuming they simply take the highest number, but out of 5 draws only one is above 10, so to me it doesn't seem right to take that number. Not that it would really make a difference in my choice to treat, but it would definately have an impact on his overall health and well being, as a true growth hormone deficency not only effects your size, but also all of your organs.

Her suggestion is to still treat him the same and to try and get growth hormone therapy, 1 shot each day, approved under a diagnosis of Idopathic Short Stature.  It is one of the 9 criteria approved by the FDA, but it is the most "wishy washy" as she called it and the hardest diagnosis to get approval for.  She is sending me literature to read over, so now, I need to educate myself and decide if I want to pursue growth hormone therapy for him.  From what I already know, this is not an avenue I will choose for him, especially since she thinks this will only gain him 3-7cm of growth, to me, it is just not worth the risks!  If it is approved, then the next battle is cost.  Growth hormone therapy is extremely expensive ($15,000-20,000 per year) and not all insurance companies pay for it, though, sometimes the manufacture will cover the cost.

She did mention that other systems could cause him not to grow...his heart, lungs, etc., though he "seems" to be healthy and thriving, she has no suspicion that there is anything else going on other than his growth hormone being low.

So, there you have it...I guess he got his "Diagnosis Day".  I still don't feel like we have all the answers, but I do feel relieved that we aren't ordering a CT Scan or MRI or other mounds of tests.  I expected to get an either/or...either he was growth hormone deficient, or he wasn't.  I never knew falling in between was an option, so I wasn't quite prepared for this.  I feel a sort of emptiness, a lack of having any real answers.  His "diagnosis" refers to extreme short stature that does not have a diagnostic explanation (idiopathic designates a condition that is unexplained or not understood) after an ordinary growth evaluation, hows that for an "answer".

So, now...I have to ponder on my choice...where do we go from here?  My immediate response is "No Way"!  Growth hormone therapy, is not worth the risks, not worth the pain, and not worth the small amount of growth it may provide.  For now, I think I need to leave him the way that God intended him to be :)

Emu's Hospital Day

Today was a big day for Emu.  A day that will hopefully be a turning point.  A day that hopefully means that we are not far from getting answers.  It's a bittersweet kind of day though...it's a day that also means life may never be the same for him/us.  A day that could bring the unexpected.  A day that could bring answers that we don't want or a day that means our worst fears may soon come true.  We fear the unexpected...but we fear the unknown too.  So, hopefully, in a few weeks we will at least have some answers...some sense of direction.

As you know, Emu has been closely watched for more than a year, as he has literally not grown since his 2 year check up and most recently, he has had a borderline abnormal bone age scan and was then refered to an Endocrinologist.  His initial workup from the Endocrinologist indicated that he has a Growth Hormone Deficiency because his IGF (insulin growth like factor) was extremely low.  So, today...he had his Growth Hormone Study done.  He spent 1/2 a day in the hospital having a Growth Hormone Stimulation Test in which they gave him 2 different drugs to stimulate his pituitary gland to release growth hormone.  A GH-releasing hormone was given to him through his iv, the other drug was given to him orally.  Then, his blood was drawn every 20 minutes for...I think it was actually 2 hours, maybe a bit longer.

Last week, we went to the $1 store and he got to pick 6 things to take in a hospital "goody" bag.  He was suppossed to choose from these items throughout the day, both as a distraction and as a reward.  He had one backpack of fun things to do and another for his special "goody sack".

Apparently, everyone didn't get the memo, because he was fishing long before he was ever poked!

They drew his initial blood, then gave him his meds.  Then we had some waiting to do...so, we had some time to play :)

We counted!

We smiled

We counted some more!

We fished some more...not allowing his "unbendable" arm to hold him back!

During his second blood draw, he seemed "off".  He wouldn't say that anything was wrong, which it's normal for him to not talk sometimes, so I didn't think anything was actually wrong, but thought that maybe having the blood drawn was bothersome to him.  He went on to play, so he seemed ok. 

The next time they drew his blood, he got pale and had the same "look".  I asked if he could be lightheaded and the nurse then explained to me that the drugs they gave him have one side effect...nausea and vomiting.  The other nurse quickly went and grabbed a puke pan and a towel, obviously she knew his fate.  Nurse 1 explained that sometimes they will get really pale...(yep, check there)...and their lips can turn grayish...(yep, check again).  He slouched over and was pretty much "done".  Not long after, I was cuddling him in the momma's boy kind of way when he started to vomit.  Falcon said that he never saw me move so fast...but by golly...we didn't miss his puke pan :)

A side effect of the med soon hit him...and he spent the next few hours like this

and like this (when he wasn't being snuggled and "babied" by Momma

Luckily, he was on an empty stomach, but he still vomitted for quite some time...a few hours actually.  He was able to sleep and rest, but never missed the pan. 

Once he had iv fluids going for a while, he started perking back up and he started playing again.  Soon after, he had his last blood draw and got an Icee treat.  He swore it was soda and needless to say, he was very happy. 

He deserved this treat, don't you think?

Feeling well enough to play darts :)

Then he was able to order something to eat.  I think he felt like a king getting to choose anything he wanted, then being served in bed.

Breakfast in bed

He got his "Certificate of Bravery" and went home feeling great.


Now, we anxiously await for when we will get the results that we pretty much already know...he is Growth Hormone Deficient.  What happens if it actually comes back normal, then what?  What happens if it comes back as abnormal as we think it is?  Then, why is he deficient...is it a pituitary tumor, an infection, a syndrome, or no real reason at all?  What testing will they do next, what else will he have to go through, what are we facing then?  Do we take the risks (diabetes, cancer, etc) and chose Growth Hormone Therapy if it's simply a deficiency?  So many questions!!!  So much uncertainty and so much worry!!!!

At least we are one step closer.  We are either ruling something out or confirming what we think we know. 

All I know right now, is that I have one amazing, happy, smart and brave LITTLE boy!



He was such a BRAVE boy today!



If only love would make them grow...

Emu and Duckling have both had issues with growing...or actually...not growing!  Each having their own completely different unrelated issues! 

For Emu, his height growth halted when he turned 2.  Now, at 4 years old, he is the same size he was a few years ago.  He is a few pounds heavier, but he is still the same height!  He can wear some size 3t without tripping over them, but he still sports quite a few size 18month and 24month pants.  At his 3 year well check it was thought that he hadn't grown over the course of his last year.  His pediatrician decided that possibly there was an error in his measurement somewhere and decided to "watch" him, rather than put him through testing quite yet.  As she requested, I took him back 6 months later for a weight/height check.  After comparing his growth charts, she said he had grown and she had no worries, even though he was still very small.   At his 4 year check up, he checked out healthy (still questioning Autism Spectrum or ADHD, or as his "daddy" says, he's full of energy) but, it was then discovered that he had "shrank" and was back to the same height that he was at that 3 year check up a year before, so apparently...he was acually mismeasured at that 6 month check up appointment and he hadn't really grown at all.  He was sent for a "bone age" xray and those results were "borderline abnormal", which was not a good thing, because this meant that he would NOT be expected to "catch up" later and have a major growth spurt.  He was then sent to the same Endocrinologist that Duckling sees.  At his initial appointment, I requested that due to his history...we get right to testing his growth hormone.  I was familiar with what to expect because we had gone through this with Duckling just 6 months before.  I had actually refused this testing initially with Duckling, but intuitively felt that is was necessary for Emu.  She instructed that we could discuss the possibility of testing his actual growth hormone at a later date, but first had to do the initial workup then go from there.  I always thought something just wasn't right, but people tell me I tend to worry too much...so, I hoped that this time, I was wrong...and after all...Duckling is small too, so maybe it was genetic!  When the phone rang today and Hawk said it was the Endocrinologist...I just knew.  She said everything came back ok, except his "growth factor"...it was very low.  This indicates that he actually does have a growth hormone deficiency.  So, for him...growth hormone testing is necessary.  So, now we await his day long visit to the hospital so that he can have his actual growth hormone tested.  This is a 4-8 hour process in which they draw his blood every 10 minutes.  They have to do this because the growth hormone changes constantly!  If it is confirmed that he does have a growth hormone deficiency, then they may look at possibilities of other syndromes being the cause, but regardless...he would have to have growth hormone (daily shots) in order to grow. 

It's amazing how things like this don't upset me.  I feel somewhat guilty for not being upset, but...I know that no matter what is wrong...we will get through it.  He's healthy and thriving...he's just small.  I will do the same as I always do...I will research and learn everything that I can about what is wrong, so that I can make an educated decision and do what is best for my child.  As I talked to my brother about Emu tonight, we were able to laugh and joke about Emu being 40 years old stuck in his little 2 year old body...riding down the road in his little Razor motorcyle.  He was glad to see that I could laugh about it rather than being upset and crying.  I guess you just become this way when you've been through all the things that we've been through.  Small things like this, don't seem to be such a big deal.  It's kinda the same as when Duckling was born and I found out that she was deaf in at least one ear...it really didn't matter...she was healthy and she was here...that's all that really matters, the rest is just about adjusting to their differences and coping the best we can.

Duckling has always struggled with her weight.  When she was just a week old, she was hospitalized for having a dramatic weight loss...dropping down to just 4lbs. 8 oz.  She wasn't dehydrated so they knew she was getting enough to eat...they couldn't find anything medically "wrong" with her and she was released after a few days.  She always struggled with getting enough liquid intake, then when she started solid foods she had issues with projectile vomiting and numerous ALTE episodes.  She was then diagnosed with numerous food allergies and later went on to have problems feeding.  She was in numerous therapies to "learn" to eat and for her multitude of delays.  Her high chair had to be specially adapted for her due to her small size and motor delays.  She saw specialist after specialist...never getting any "real" answers.  Just as she got to the point of needing a feeding tube, she came around on her own, but just barely keeping the GI specialist from tubing her.  As she was months away from her 2nd Birthday, her GI specialist still wanted her calories to come from her special formula and only wanted her to eat enough food to not loose the skill of eating..this was not a practice that I was ok with, so we stopped going.  We moved and started all over with different specialists.  Her new GI, and Nutritionist agreed that "she's just genetically small"!  She was sent to Endocrinology and her workup there showed no syndromes or genetic disorders causing her to be so small.  It was possible that due to her unusually small size, she may qualify for growth hormone, but I initially refused growth hormone testing and agreed to have it done if she didn't grow in a 6 month period.  When we went back for her 6 month check up with Endocrinology, she had grown in height but not weight.  Since she had grown in height, it was not necessary to do the growth hormone testing on her, but her weight (just 23 pounds a month shy of her 3rd birthday) is still a concern.  We met with one of her nutritionalists the other day and according to their scale...she is gaining weight...2 lbs since they last saw her.  Since her food/fluid intake is so small, they are really pressing for us to give scheduled snacks in between meals.  She said that she can't possibly gain weight in the small amounts of foods that she eats for her 3 meals.  We had cut snacks around here out of fear that it will ruin their appetites for dinner.  They didn't have a lot of tips to offer, just the basics...add butter, powder milk, peanut butter, yogurt, whip cream, cream chese, etc. etc. to any foods we could.  I came home and researched her theory on toddler snacking and couldn't find one article or website that disagreed with her.  So, I dug through my file cabinet and found all of the useful handouts we got from one of her therapists on adding calories when she was just an infant struggling to eat anything at all.  Back then, the GI doctor was trying to have me add oil to her formula...seriously, who would drink that and it just didn't seem healthy.

We've tried most of these things in the past and surprisingly the kids love quite a few of these things.  So, for now...we will go back to scheduled snacks between meals and I will make a point to make at least 1 or 2 snacks a "Calorie Booster" packed with a punch!  After all...every calorie counts...even though they won't help Emu grow!

In the next few days, I will work on putting toghether all of the great ideas for adding calories for those kids that struggle with weight gain....

.......if only love would make them grow!