Monday, March 29, 2010

good things come in small packages

Last week's visit to Children's was a very busy and productive day.

Good news from cardiology and otolaryngology (ENT)...but fairly disappointing news from nephrology and endocrinology.

Max was totally not happy with all the heart evaluations. He has never had such a harsh aversion to it all. Fortunately Mommy love and Elmo videos saved the day!

Elmo video is right there so the crazy robot wires were not a problem! Yay for Elmo!

Now on to Nephrology...

Max's recent ultrasound showed kidney stones and small kidneys (for his size). Additionally, there is a decreased function level and elevated blood pressure (sign of kidney issues). Sooooo...right now we are changing his diet with A LOT of water and lower sodium. His team is hoping this helps break up the stones and we won't have to resort to medicines.

Then after a few other appointments, we moved on to meet with Endocrine. Max's growth issues are not a surprise to me...

One, he is obviously small for his age. (Good things come in small packages, right?)

Two, a lot of individuals with CHARGE have growth challenges.

Three, his last two blood draws have indicated very lowel growth hormone didn't even show up at all.

So as expected, we are scheduling a hormone stimulation test for confirmed proof. He must fail both tests to show he is truly "deficient." Once this is determined, the plan is to begin growth hormone shots.

The surprising part of the treatment plan was that it involves daily shots until he is 16 years old. At that time, he will be retested and the plan will be reevaluated. Just the thought of giving him daily shots for the next 11 years...hmmm, that was a little surprising. In the grand scheme of things, it's such NOT a big deal...just disappointing.

Fortunately, Maxwell was an amazing trooper throughout the day and kept me focused on what is most important....he is a happy, loving, energetic and social little boy who enjoys life.

"YAY! The day is over...let's celebrate!"

Despite only getting four hours of sleep the night before and being on the go, go, go all day, this is Max that night at 10 pm...still ready to rock! (And yes, these wonderful cymbals were hidden that night so they can only be enjoyed during the daytime.)


Kurby Family said...

You are such a trooper, Max! So glad to see that smile at the end of a rough day. With a determined and loving mommy like yours it must be easy to smile for her! And yes, good (actually great) things come in small packages. Hugs to both of you.

Carolyn said...

Incredible Amy, you are right on with "good things come in small packages". He is such a little man and after the tears, I loved seeing him smile.
Love you both,
Carolyn in WV

hannah m said...

I am totally impressed that Max endured such a full day of intense appointments. And I am so happy he got to make some noise to unwind once home!


Ruthie said...

Amy that last picture just shows what an amazing pair the two of you are! The love just oozes from you guys! Your doin' great! Just keep up the great mommy work and Max will continue to be your precious package!

Leslie, Arlin and Katie Kauffman said...

Wow, what a long day! But actually, I prefer getting a bunch of visits out of the way all in one shot like this, rather than having umpteen appointments to deal with.

Glad you got good news from the echo and ENT visit. That first picture of you and Max just breaks my heart--his tears, and the look on your face of the heartbreak of having your child have to go through all this. That picture says so much and really hits home.

Sorry you didn't get good news from the endo and nephrology visits, though. Katie hasn't had any kidney or growth issues, thankfully (she's short stature, but her weight is progressing well, and no hormone issues yet), so I can't offer you much information or suggestions there. I'll be interested to hear how this all progresses.

Hugs to you and Mighty Max!

Alexis said...

Hi Amy,
Max is such a brave boy, like all children with Charge! A while ago a friend had to start GHT shots, and told me research is happening into a non injection form for Growth Hormone so it could be that is an alternative in the future...which would be good! I know to Charge families giving a daily shot would not be a particularly big deal compared to some of the things they cope with. But it does just seem another mini injustice to have to inflict a jab on our little one each day. I too felt really upset when it was mentioned as a possibility for J. But he was lucky and it wasn't required. HUGS to you both.
Alexis, Mum to J with CHARGE in UK

Katy said...

I absolutely LOVE the cymbals pictures! Max is so full of spirit, even when he has days full of doctors visits and tests. :)

Crystal M. said...

Great job Max!! We are talking growth homromes for Eva as well, but I am waiting anther 6 months before putting her through anther horrible test. I hope everything goes well and Max you are adorable as always!!

Kristi said...

Long day... whew. I'm with Leslie about that first picture.

Glad about the good news and so sorry, friend, about the not-so-good news. (We love ourselves a small package around here, too!)
That GH treatment sounds extreme... I had no idea they'd prescribe treatment for that long right from the start.

Thinking of you...

And... even though it meant a sleepless night for you, I love the fact that Max was ready to play his cymbals when you got home!