one year of growth

Can you believe how much this kid has changed in just one year?  (Don't mind the crappy iphone photo.)  We've been doing the Growth Hormone Injections every day for one year now and we're amazed at how well it's been working.  Parker grew 6 inches in just 10 months, which is INCREDIBLE.  Amazing results is about 4 inches a year.  Normal growth is 2 inches a year.  Parker clearly exceeded that.  The most amazing part is that he's not having any side effects.  We are so grateful that Parker's treatment is working so well and pray that it will continue!  

results

"I delight in the examples of those in the scriptures who walk by faith on their earthly journey. Each time I walk with Abraham and Isaac on the road to Mount Moriah, I weep, knowing that Abraham does not know that there will be an angel and a ram in the thicket at the end of that journey. We are each in the middle of our earthly path, and we don't know the rest of our own stories. But we, as Abraham, are blessed with miracles."  Susan W. Tanner, "My Soul Delighteth in the Things of the Lord," Ensign, May 2008, 82-83

Obviously, I couldn't tell you about Parker's MRI and not share the results with you.  I just thought I'd make you wait like we had to do for TWO long days!  After what seemed like eternity, our doctor called to let us know that everything looked great with Parker's MRI.  The nodule was unchanged.  In fact, she's pretty sure it's not even a nodule, but actually his posterior pituitary gland.  It's not in the exact location it should be, but that doesn't matter as long as everything is functioning correctly.  He would be having problems with water retention {going to the bathroom too frequently, extremely thirsty} and he doesn't have those issues at all.

The other good news is that she was able to see the pituitary stalk and the pituitary gland.  As you know, the radiologist originally thought the pituitary stalk was not connected, this is not the case.  It is connected and everything seems fine.  She said that his pituitary stalk and gland were a little smaller than normal.  However, the bottom line is that NOTHING was uncommon about his MRI or worrisome.  She feels confident that we are on the right path and that we have nothing additional to be concerned about.

Parker still has a Growth Hormone Deficiency.  We know this because of the blood work they originally did which determined that he was not making any growth hormone.  Now, we just don't have a good explanation for it, which can be a little frustrating.  However, I think it is a testimony to the fact that prayers are answered.  Miracles happen every single day.  We don't have the answers to why, how or when, but we know that if we have faith everything will work out the way it's supposed to in the end.

We will continue with the daily injection treatments and follow up with our doctor every 4 months.  We'll do lab work and more extensive testing every year.  Who knows, maybe next time they'll tell us that everything is normal and he no longer needs the injections?  Until then, we'll continue to thank Heavenly Father for our blessings and have faith that he knows what is best for us!

another day in the life of parker...

You all know how excited we were after Parker's last appointment with his Endocrinologist.  However, a few days later we got a letter from her stating that Parker needed to have another MRI.  After reviewing his case she was still concerned about the nodule on his pituitary.  The radiologist who originally did the MRI believed that this nodule is Parker's pituitary stalk that bunched up after being disconnected from the pituitary.  However, our endocrinologist was not convinced.  She believed it could be a tumor.  She requested a repeat MRI to make sure that the nodule had not changed at all.  So, Tim and I got to spend another morning at the hospital with Parker.  It was amazing what an old pro he was.  He fasted all morning with minimal complaints.  He walked straight to the video games in the waiting room.  He hopped on the scale, he held his arm out for the blood pressure cuff and sat on my lap when it was time to be poked.  The nurses were so impressed with how brave he was.

Parker was trying so hard to be brave, but he let a few tears slip out after they got him up on this bed.  He was scared.  The MRI machine is really noisy, the room is cold and seeing the big huge machine behind him was a little intimidating.  It was so hard to watch him like this, but the medicine kicked in quickly and he was off to dreamland.   

Tim took this picture of the computer screen while they were wheeling him into the machine...yuck!

He made it out unscathed!  They tried to wake him up immediately after by giving him a popsicle, but he managed to sleep while eating the popsicle.  Poor groggy boy! 

Prior to the procedure Parker requested McDonald's.  After we finished, we asked him if he still wanted to go and he mumbled, "Can I get a toy?"  We assumed that meant, "Yes."  I had to prop him up to eat his food.  He kept falling asleep and dropping his chicken nuggets.  The nurses told us to try and wake him up or else he would sleep all day and night.  I promise we weren't trying to torture him, but it certainly looks that way.  On the way home, we picked up Cooper at Jaimy's and offered to take Kyle to the bus stop.  Kyle was a little nervous about Parker's condition.  We tried to make him feel better by taking a picture.  Parker thinks this picture is so funny now!

As soon as we got home, Parker did wake up and ask for the rest of his chicken nuggets.  I informed him that they were on the ground at McDonald's.  He settled for some toast and enjoyed watching Toy Story 3 all afternoon with his Mom.  We are so proud of how brave this little guy is.  It's amazing how much he's changed since his last MRI 6 months ago.  I can't believe how different he looks!

two inches

We had our first follow-up appointment yesterday with Parker's Pediatric Endocrinologist.  I've been anticipating this appointment for weeks.  Similar to the excitement you feel as you prepare for a prenatal visit.  You're nervous, anxious and excited.  You anticipate that you will leave the appointment with great news and be steps closer to your desired outcome.  In pregnancy, obviously the desired outcome is a healthy baby. 

My children may be getting bigger, growing older and maturing, but they are still my babies.  I'm still responsible to keep them healthy and care for them just as I did during gestation.  In pregnancy there are many signs that your little fetus is doing well.  An expanding waistline, feeling the baby kick and an ever increasing appetite. 

Since Parker's Growth Hormone Deficiency diagnosis, we've felt just as lost as we did when we found out we were pregnant.  We felt like we could spend hours asking the doctors and nurses questions, but to them everything was just standard procedure.  They sent us on our way with little information, some medicine, wished us "good luck" and told us to come back for a follow up visit.  

Just as I did during my first trimester of pregnancy, I spent hours goggling everything I could find about Parker's condition.  As with pregnancy, every experience is different and unique.  As with pregnancy, we felt like all we could do was follow our doctor's instructions, pray, wait and have faith that everything would work out the way it should.

We've been following the prescribed regimen of daily Genotropin injections.   Parker is still a champ.  Tim has become an amazing nurse.  I'm still pretty good myself.  Payton and Cooper are the best cheerleaders.  We faithfully count together every night, "One alligator.  Two alligator.  Three alligator.  Four alligator.  Five alligator."  It's become part of our bedtime routine.

It feels like we hit the second trimester.  You know that part of pregnancy where you begin to feel comfortable.  You're not as sick and you have a sudden burst of energy.  However, you are still anxious to know that all the sacrifice and effort you are putting into this pregnancy or in Parker's case, his injections, are worth it.  

Tim and I had noticed that Parker seemed taller and skinnier.  His clothes that used to hang on his body were fitting a little better.  We unrolled his pants.  His shorts were becoming a little too short.  Friends were commenting that Parker seemed taller.  Leaner.  Our friends and family thought he was growing.

Just as people begin shyly commenting about your increasing belly during pregnancy and telling you that you look so great.  You try not to believe them.  You want to believe them, but it all seems too good to be true.  It seems surreal.  

This is exactly how I've felt about Parker's situation.  I knew he was growing, but I wasn't sure how much.  We neglected to take his exact measurements at home the day we started his injections.  We kind of had bigger things on our minds like trying to dose .6 mg of medicine into a needle, make sure the air was out, the needle was attached just right, swab the skin, dispose of the needle in the sharps container, hope that your child isn't screaming bloody murder and that we weren't bawling our eyes out...type things!  We knew it seemed like this medicine was working, but was it really?  We weren't sure.

I sat in the hospital waiting room with butterflies in my stomach watching Parker play a Batman Lego Video Game, within two minutes, the nurse called us back.  "Parker?"  Here it was.  The moment of truth.

"All right, Parker.  Can you take your shoes off and hop on the scale?"  The sweet nurse said as she commented on his Obi Wan Kan Obi tattoo. {Going back to the pregnancy analogy, of course the weigh in was always my LEAST favorite part about the prenatal visits}.

"Now come over hear and let's see how tall you are."  The nurse had done this a million times.  I, on the other hand, felt like I was waiting in line for the Tower of Terror at California Adventure.  I think in my mind I was repeating over and over again, "No whammies.  No whammies.  No whammies."  Don't judge me.  I was nervous.

She told me the measurements and I was frantically writing them down.  As if I knew what they meant.  How tall did he used to be?  I couldn't remember.  Parker was already getting his blood pressure checked and being doused with stickers while I was trying to act completely coy and ask about his previous height.  

She sat us down in the room and we had to wait some more.  Again, this felt so similar to my pregnancy analogy.  More waiting.  No news yet.  The doctor came right in, quietly reviewed the charts.  Reviewed them again.  Reviewed them again.

"This is amazing!  You've grown two inches in four months."  The doctor was pleasantly surprised.   

{Did you read that?  TWO INCHES IN FOUR MONTHS.  He only grew 1.5 inches last year!}

It was amazing.  We'd heard stories of four inches the first year, but that is incredible success.  We were told to expect centimeters a year.  The doctor finished giving Parker a thorough exam and was even more stunned to discover that he was having no side effects from such a rapid growth spurt.  

It was just like the first time I saw my little two inch fetus on the ultrasound.  I was giddy.  It's a miracle.  The miracle of life begins with conception and continues throughout life.  Our bodies are amazing.  Modern medicine is truly miraculous.  

I feel peace knowing that, for right now, all is well.  This daily regimen is working.  Parker's body is accepting the treatment and he is growing.    He is getting stronger.  We know that we have a long road ahead of us.  Unfortunately, the waiting period is much longer than a nine month pregnancy, but the end result we hope will be the same.  A healthy baby.

 P.S.  Since this post seems way more about me, my feelings and my longing to be pregnant again {did I just type that?}  I thought you may be interested to know how Parker felt.  He was just happy that he didn't have to have his blood drawn today.  He was breathing a sigh of relief when he found out there would be no needles.  He could care less that he grew two inches.  "I already knew I was taller."  He's not even phased by any of this.  He loves the attention, the stickers, the treats and going on a "date" with Mommy.  Gosh I love this kid.

new credentials

Lately, I really feel like I deserve these two initials following my name; RN.  That's right I'm {pretty much} a Registered Nurse.  You see, I never signed up for any classes nor have I ever, for even one second of my life, had the desire to become a nurse.  I hate needles.  I hate blood.  I hate hurting people.  I'm sorry, but that's what I believe nurses do.

However, since becoming an RN, I've realized that nurses really are necessary to help people, not just hurt them.  For some reason, Heavenly Father decided that I needed to have this experience.  Maybe to really appreciate what nurses do?  Believe me, I appreciate them, but I just don't want to have anything to do with them when they have needles in their hands.

I digress, maybe it's not nurses; maybe it's just needles.  One of my favorite stories is the time when my Mom was doing daily "injections" {that's the preferred word at our house}.  My Dad was out of town and he usually gave my Mom her shot "injection."  My Mom casually informed me that I had to give her this "injection."  She told me it was so easy.  Then she pulled out a huge needle and told me to just quickly shove it into her arm.  What?  Are you kidding me?  No way!  Never!  Seriously, Never!  You can't make me do this!  All of these comments were made while I was bawling my eyes out.  I've never been so terrified.  I tried to practice on an orange for hours.  She begged me.  I'm sure she offered me a million dollars, but I still refused.  Every single time that needle barely touched her skin I freaked out.  I could not penetrate skin with a needle.  Too cruel!  I never did.  My Mom had to call a neighbor to come over and give her the shot.

Now fast forward 14 years, I've just been informed that I must give my son daily shots "injections."  I am not afraid.  I am not scared.  I can do this because I am his Mother.  Being an RN is part of the job description.  I must become a nurse; my most dreaded occupation ever.  I now have new credentials.  I must do what I need to do to help my son.  I'm sorry Mom, but the job description of a daughter is soooo not the same.  I still love you just as much though!

I'm still bawling my eyes out after I put away my needles, but for totally different reasons.  14 years ago I was mad that my Mom was trying to get me to hurt her.  I was scared for me, not her {sad, huh?}  My Mom was brave.  I knew she could handle anything, but I couldn't.

Now, I'm sad for my son.  I'm scared about the side effects, the future and the unknown.  I'm sad that I can't take this pain away from him.  Like my Mom, I am brave now.  I had to become a Mother myself for that bravery to be manifest.  She has taught me to be a warrior.  She has also passed that trait on to Parker.  He is the toughest little kid I know.  I would have never been that brave at 5-years-old, but Parker is brave.  In fact, Parker gets his own special credentials.

Super Brave {SB}.

{Seriously, have you ever seen a kid posing with a shot in their hand and looking so happy just minutes before getting poked by a needle?}

{Check out all our RN supplies}

 {Brittany Jones, RN and Parker Jones, SB}

P.S.  I must mention that Tim also deserves the RN title as well.  He has administered a shot himself and he dislikes needles more than I do.  He also dislikes getting his eyes dilated, watching someone recover from surgery and having a wart frozen off {so much so that he will actually pass out}.  Which is why inserting a needle into someone's body is a super big deal for him.  I think he can have both the RN and SB titles.

P.P.S.  I know we are total wimps.  I also know that we are so blessed.  They are many much, much, much worse things we could be dealing with right now.  I have to always mention how grateful we are for the trials we have.  Although, we would not like anymore nor would we like to trade with anyone else, we do consider ourselves extremely blessed!

parker's growth hormone stimulus test

Parker had to do one last test before they could start growth hormone treatment.  He had a Growth Hormone Stimulus test done at Primary Children's Hospital.  He was admitted to the hospital for the day.  They put us in a nice big room with his own bed, tv and unlimited movies.  Parker thought it was awesome and was having so much fun, until...

 

They began poking him!  They had to place an IV line in his arm.  Because he was fasting, he was dehydrated and it was extremely hard to find a good vein.  Also, they had to put in a fairly large IV because of the procedure.  He had two nurses poking him and trying to get a vein for 30 minutes.  It was so awful!  Parker is really brave and he barely cried or whined.  I kept telling him that it was okay if he wanted to cry, because I wanted to!  As you can see by his face, after the torture he was not very happy.

 

He was so exhausted from the trauma of the IV line that he fell asleep.  For the test, they gave him medication through an IV in order to stimulate his hormones to see how much, if any, hormones he is producing.  They had to draw his blood before the procedure and then every 30 minutes during the 4 hour procedure.  Every time the nurse had to draw his blood it was torture again.  Because they were not able to get a good vein and place a big enough IV line, they basically had to irritate his arm so much just to get blood out.  Once again, it was pretty miserable for Parker.

 

As always, Parker was a champ.  He was so happy when the procedure was over and he could finally eat.  He got to order anything he wanted from the awesome menu.  He ordered a big pretzel, chocolate milkshake and banana.  Yummy!  They had to make sure his stats were normal before he left so he had some time to pick out a treasure and enjoy his lunch.

These tests have been exhausting for all of us, but we feel so blessed.  We feel blessed that we have amazing doctors, medicine and health insurance to help us provide the necessary help Parker needs.  We also feel blessed that Parker is not dealing with anything life threatening.  We'll take this little trial compared to the many other children who are suffering with much more.  We feel blessed that Parker is having so much fun with all the attention.

Since this test, we have found out that the insurance company has given pre-approval for his growth hormone medication.  He will begin getting daily shots and hopefully, start growing.  He's excited and keeps asking, "when is my medicine going to get here?"  Unfortunately, he doesn't know that it will be given in the form of a shot.  We are optimistic that he will continue to have a great attitude and enjoy the attention!  Thanks to everyone for your amazing support.  We have such a great support system of people who truly care about what is going on with Parker. 

Thank you!

our brave man

Parker has had to be poked and prodded quite a few times over the last couple months. We've discovered that Parker has a Growth Hormone Deficiency. We're still trying to figure out what all this means and determine treatment. Unfortunately for Parker, the poking and prodding has just begun. This week he had to have an MRI {which will only be his first of many in the future}. They had to sedate him, but he didn't even make a peep when they inserted the IV. He was so brave!

{Happy as ever, moments after getting the IV placed, picking out a treasure!}

{Parker and Daddy}

{I know, this picture is so sad.
The nurses prepping him before they put him into the MRI machine.}

{Sleeping peacefully after the procedure was over.
We couldn't wake him for hours after they were finished.}

The good news is that Parker has no idea what is going on. He is just loving all the attention he is getting. He doesn't care why people are giving him cards, cupcakes and cookies...he'll take whatever attention he can get! He loves going to Primary Children's and playing video games, picking out of the treasure box and getting spoiled rotten.