It's GROW Time!

The nurse Jonna came out and sat with us for about 30 minutes, showing us all the tools and giving us lots of great information about the medicine and the drug company, and insurance. She even noticed the needles they sent us are a little big and that we should be using smaller ones since Mason is so lean. Jonna walked us through all the steps of prepping the pen (it's called the Nuspin). We got to practice several times with a demo pen, and even Carter got to practice. She talked us through the entire process, which really helped!

Then, we got our little patient! He was NOT having it - so holding him down was not easy (although something we've gotten used to doing over the years!). We have to alternate the injection site nightly, but we're starting with the buttocks (which is "meatier" and means that he can lay on his tummy and watch TV as we inject).


It was a quick jab, and then we have to hold the pen in and count to 5 to make sure the medicine gets in. Not too painful, for any of us! We'll give it to him at night because your body creates the growth hormone while you sleep, so this will help to give what little hormone he is producing a BOOST! We'll connote to monitor the injection sites and watch for any growth (which might take anywhere from 3-6 months). Thank you for your continued prayers during this process - we couldn't have made it this far without them!

a little bit closer now....

We have his growth hormone injection ordered, paid for (thanks to an insurance co-pay assistance card - this month the cost was to be $994!). We got the confirmation phone call today that the medicine will arrive here tomorrow (and will need to be refrigerated!). We are still waiting on the phone call from the nurse to arrange training (they will come to the house and show us how to inject. We've (well, Carter has!) watched all the information videos they sent out, and Mason was listening even though he cringes at any thought of this, and it looks easy enough.

In the meantime, here he is, organizing and sorting his Pokemon cards!

We aren't really sure of the method to his madness (this is the first time he's put them in rows like this) - usually he just takes them out of the plastic sleeves and rearranges them another way.

So Long 4th Grade!

Mason is finishing out his fourth grade year, and his final year at Cibolo Green. He's been there since first grade and we've been blessed with some pretty amazing teachers and special education support staff over the years. It was during his ARD that we decided he should take the STAAR A for his state assessment - and it paid off! He PASSED the Reading! He had all A's and B's and even got the Leader in Me award for Habit #1: Be Proactive.

He is still into math, and even continues to do so at home, in summer, just because! He had a small victory at Main Event - he made it all the way to the top platform, thanks to Aunt Denee'! He didn't make it any further, but that's farther than he's even been --- baby steps!

Getting closer to growing!

We were excited to get a phone call from the doctor's office mid-day last week. Insurance has finally approved the growth hormone injections! We are just waiting for a few more phone calls, one being the expected shipment date of the medicine, and then we can arrange for a nurse to come out and provide us with training on how to give Mason his meds! In the meantime, this comes in the mail....

Meatotomy is Done!

apologies in advance - not sure why the text is highlighted or how to fix it....

This morning Mason had his Meatotomy surgery to fix his Meatal stenosis. Meatal stenosis occurs when the opening of the urethra, where urine exits, is too small or narrow for urine to pass. To let the urine flow freely, a small cut is made to enlarge the hole.

Mason had to fast for this surgery so this morning was the usual whining "I can't do this" and silliness in the car on the drive over, which luckily isn't too far away! Mason got dressed into his gown and socks - all blue! He kept busy waiting with his iPhone and Sea Cone (AKA Tucker the turtle). He still has trouble taking medicine, so when the nurse gave him his first dose of "happy juice" it dribbled down his face and onto his gown. So we cleaned up the sticky mess and got into a new gown and waited.

At 9:21 he was wheeled away but the nurse and we went to the waiting room. The doctor came and got us at 9:44 and said surgery went well. Mason's opening was actually 1/3 the predicted size, but he was able to make the necessary slits and with the 3 dissolving stitches, Mason is good to go!

We were able to go back and see Mason in the "Wake Up" area at 10:08, and there were some slight tears of joy from Daddy! Mason asked for his phone, and said he wanted 7 hamburgers! He was given some ibuprofen (hidden in cranberry juice this time!) and then later said he only wanted 2 hamburgers. He was asked if he wanted a wheelchair or Daddy, and looks like Daddy won! When he was getting dressed, he cheerfully piped out "Sonic, here we come!".

We were in the car by 10:44, to which he proclaimed "to Sonic!". He ended up ordering 3 hamburgers and 3 large Ocean Waters and headed home. We are to push fluids to increase his flow - and for the next 4-5 hours he's still numb. Prayers will be needed when that numbness wears off! He has no restrictions and can pretty much go about his day. Of course the anesthesia didn't work long - he's yet to sleep!

At 1:30 this afternoon, he's gone to the bathroom 3 times already and we have seen some expected spotting - and now his tummy hurts, but probably because of the hamburgers and just coming out of surgery!

Urologist report

We met with the pediatric urologist our P.A. referred us to and we felt very comfortable with him. With a quick assessment, he was able to determine that Mason would need surgery to correct his urethra. It's a quick 10 minute procedure where he'll make a small "slice" at the end of the urethra. He'll put some numbing lotion around the area, and Mason should not be in any pain. He'll need to increase his fluid intake, which he was excited about when I mentioned he could get as many Ocean Waters from Sonic as he wanted. He's still doing the math on that one!

We've been pleased with how fast we've been able to diagnosis and schedule this surgery - and can't help but wonder if this isn't somehow related to all the other little things going on with Mason. (Of course that was one of my first questions to both doctors, who denied any relation). Just another random layer of the onion of Mason coming off.

I don't know how long it'll take, but I know that we are getting closer to finding out just who Mason is and what makes him just the way he is, which is just the way he's supposed to be.

Another specialist....

The morning Mason was going to take his first STAAR writing test, he was complaining of his privates hurting. Hensley had already left for work which left me to question and look. He went off to school with the understanding that I'd make a doctor's appointment for him for after school. It wasn't until lunch time that I sat down to call his doctor, which I almost didn't do.

At the appointment, our P.A. (who we love almost more than our doctor!) examined Mason and collected a urine sample. Sample looked awesome! She did mention she was glad we came in because this was something we needed to take care of. She was sending us to a pediatric urologist because Mason has a urethral stynosis, which is a narrowing of the urethra. We go in next week to see the urologist.

Of course, when we got home, I had to check little brother for the same thing, just to make sure! All good!

MRI results are NORMAL!

We got the email today with the results from the MRI and they are NORMAL, which is good! It means there is not a growth or tumor or anything else causing his "short stature".

The next step might be the worst one yet, but luckily it doesn't involve Mason! We (well, the doctor's office!) will submit to insurance for growth hormone for approval and we wait for them to call us. The process does take "a while.... 3-4 weeks". So, we will wait. And wait. And wait.

After the last stim test when we were told we might end up here, Dr. P told us that it'd be nightly in home injections! Not really looking forward to that but from others I've talked to it's similar to an Epi pen and he can do it himself. If not, we have 3 nurses as our next door neighbors!

But, while we wait, Mason tells me he thinks he's growing because he had growing pains today!

Growth Hormone Test - MRI with sedation

With the failing results of the first 2 growth hormone stimulation testing, the next step is an MRI, with sedation. We arrived at the hospital around 10:45 and after a few minutes of wandering around Methodist Hospital, we finally arrived at the registration area. We waited awhile (we were early!) before a sweet nurse named Annette came and escorted us to the pre-op area.

Mason did pretty good waiting for a while, with the help of my phone and Minecraft! It wasn't until we had to go into the bathroom and change into the hospital gown that he started screaming. He DID NOT want to change into that gown. I was able to get him dressed and we went back to our bed where we waited for about an hour (in between that time included getting his IV put in to his hand)

They put his IV in his hand this time, which was different from before but after the initial poke and watching the little bit of blood flow out onto the blanket, we both did okay (granted, watching the nurse move the needle around under the skin was making me a little queasy!).

We were in the pre-op area for about an hour and Mason was finally settled down when we pulled out the books we bought from the school's Book Fair earlier that day.

The doctor finally came in and we talked about the anesthesia, and it took Mason a little longer than usual to accept the anesthesia and fall asleep, but then they wheeled him off and sent me on my way to the waiting room.

As soon as I sat down, I noticed the tiles in the ceiling were either painted or covered, and this is the tile directly above where I sat down. If you know Mason, he LOVES dolphins! I just had to smile! Not long after, a family came in and I scooted over so they could sit together and I noticed the father had a TLU pullover on so I asked whether he went there and talking with them helped pass the time while I was waiting.

About an hour later, the nurse came to get me to take me back to recovery where Mason was sleeping so soundly. It took him a while to come out of it, and he quickly jumped on the offer of a popsicle! 

  

He didn't throw up or go back to sleep as expected with the anesthesia, but I sure was asleep by 9!

Growth Hormone Stimulation Test - take 2

January 2015 - Round 2 of the growth hormone stimulation testing, this time with Argeneen (sp?).

At this appointment he weighed 47.9 pounds and was 48.2" tall. He got Dolphin Tales2 for Christmas so that's the movie he took to watch today. Amazing movie! He was able to return to school this time.

This time they added a 20 minute drip, which caused a copper-like taste in his mouth. I wish It'd recorded it, kinda, because all I heard that morning was "I'm huuuuuungry" and "I'm thirrrrsty". If he fails this test again, then we hMRI and request growth hormone injections. Yike

He had to fast since midnight, so after the test, we went to Pizza Hut and he got the buffet. 

Two helpings of pasta, and 4 pieces of pizza!