Still on HGH

Big Al had his check up at Children's Hospital last week... good news.... he has grown... bad news... he has not grown much! He has grown about 7/8 of an inch in 12 months. Not a bunch... sadly we were really hoping for a whole lot more. We did manage to hold a whole 5 pounds on him in six months! That is itself is a huge task for a kid that hardly eats - and then proceeds to burn calories like crazy! So, we will be continuing the HGH shots for another 6 months to see what happens. It would be sooo nice if he just shot right up there a few inches..... sigh - wishful thinking!

Weight news

Big Al hit the 70 pound mark! Very exciting! His last appointment at Childrens went pretty well, though they are a bit concerned because his bone age is catching up to his physical age faster than they would like...before he was a bit over 3 years delayed growth, now it is only 2 years.
Hopefully, the HGH shots will start to really kick in... since last April, he has grown about .75 of an inch.....grrrrrrrr!

Will these things ever work?

Little J took this picture for me the other day at Big Al's soccer game.... obviously, he is the one in white!

We have been chuggin away at the HGH shots now for almost two months. We have actually seen no weight gained - but weight LOST!! UGH! We have to hold tight until next month to see if there is actually any HEIGHT gained.. which is the hope! The picture of the kiddo next to Big Al is "normal" sized for a 7th grader!

Keep your fingers crossed!

Well... week one down

We have gone an entire week on the HGH shots for Big Al! I have yet to seriously poke him wrong or leave a bruise!! I guess it means I have the "touch" haha!!

We get to head back to Children's in November to do a follow up appt to check height and weight... keeping my fingers crossed that this will work!

Whoo-hooo!!!!

We have FINALLY been approved for HGH injections for Big Al! We had our first consolutation with a training nurse this week and got in all of our supplies! While we are not holding our breath for any dramatic results... it sure would be nice!

Basically, he will be receiving daily injections of a synthetic human growth hormone. While he already has PLENTY of growth hormone in his system, they are not trigging right (aka - meaning he is not growing!)While HGH is pretty controversial with some folks (usually those folks who don't have a special needs child that has numerous challenges in life!) for Big Al, it is a necessary route we need to try. Since he has grown very very little in the last 12 months, it has become more apparent that "something" is not right. For Big Al, the HGH is going to be used to simply "jumpstart" some of his growth hormones to see if the synthetic will help the hormones he already has, work correctly. No, he will not end up being six foot tall - or even close. But, due to the fact that he has missed pretty much every growth spurt in over 6 years, the chances of him catching up to an "average" height of 5'6" is iffy without some intervention. We are hoping that some good will come out of these, as it is stressful for all of us, especially him!

Poor little Miss O

Today, Miss O had her very first Emergency Room visit.... After we got home from fishing, the kiddos were all outside running around, enjoying the day.. until BAM!!!! Someone started a horrible blood curdling screaming!! Apparently, Miss was was coming outside and closed the door on her finger, which got caught between the doorjam and the strike plate... ouch!! Blood was shooting out and it was pretty obvious to us that it was more than a band-aid kinda repair!!

We left immediately for the ER, fortunately got into a room right away!! Three hours later.... we were able to take her home with a re-attached ring finger and 8 new wire stitches!! The poor little thing had the hardest time while the stitches were being sewn... she kept screaming at the doctor, "Are you done now??"
We were able to take our little stinker home with a big ER bill, and a nice new bandaid!!

Another appointment with no answers

I took Big Al to Children's last week. It was time for his "official" six month check up with the endo doctor. Well.. he gained a whole 2 measly pounds in six months.. I personally can gain 2 pounds in a weekend (or less!!) and his height gain was very minimal, probably only shown as an increase due to needing a haircut!
I did request that they test him for lead poisoning, which they did... his levels came back at very low. His doctor was really hesitant to test for lead.. her EXACT words were, "We really only test for kids who eat paint chips.... (then looking at Big Al she says..."oh never mind - forgot!"... I had a hard time not busting up at her question! The kid has practially stripped his bunk bed of any paint!
So, moving forward... we are applying to get HGH (human growth hormone) approved from the insurance company. Since he apparently has enough growth hormone in his system, they are applying for it under the diagnosis of ideopathic short stature aka (ISS) which basically means they have no answers to why he really will not grow!
According to Children's, it could take up to 3 months to see if we can get approved. It is a lengthy process because typically, for children with ISS, it is a "cosmetic" drug... that cracks me up - but oh well!
We are still trying to do our part to get the kid to EAT, but it is an exhausting and frustrating process... one that I wish I did not have to deal with!

Not the best news... but news none-the-less

Today, Big Al's doctor at Children's Hospital called us with the results of last weeks growth hormone testing. The doc was upbeat and excited about the results... I was not.
Apparently, they wanted to see Big Al have a hormone level of 10 (10 of what - I can't remember!) his came in at 21.. which was DOUBLE the norm. This was exciting for the doc because it ruled out the fact that his body did not produce enough growth hormone. Unfortunately though, it does not explain WHY he is not growing!
So, the doctor does not want to see him for another 3 months. She is counting on the fact that he will grow a significant amount (for him) in that time period... then she can just say he had a delayed spurt..... In my heart, I know that this is not the case, but at this point, I am so tired.... When I asked her what should we do until the next appointment, she said to keep doing everything that we have been doing for the last 6 months!
Her response about killed me! I don't believe that I have the mental or physical stamina to keep after this kid for another three months.. I'm worn out! I am tired of requiring him to finish his meals.. to count the calories, fat and proteins in everything he eats, to keep bugging his teachers to make sure he eats his snacks... all these things just chew away at my patience! It may not seem like it is a big deal to most people... but when you have to deal with the numerous other challenges that Big Al has, it takes its toll.
For the first time in a long while, I just sat down and cried out of sheer frustration and emotional stress. We have so many things to figure out with Big Al, I just wanted something to come out with an answer for us.. just one thing to help clear the clouds for once. Apparently, this one is going to stay on the stove for awhile. How many burners can a stove have anyways??

The growth hormone test

We completed the growth hormone test for Big Al on Thursday.... things went fairly well.. he was fighting the sleepiness of the medications for the first hour - which concerned the nurse, as they were worried that his blood pressure was not in the correct range. During the last part of the test, his blood sugar had to be tested every 15 minutes to make sure his blood sugar did not drop too low. His blood sugar had the opposite effect - it went up pretty high. Also, during the last part of the test, his blood pressure dropped really low - to the point where they had to wake him up and have him move around a bit.
We were able to head home in the afternoon. Big Al slept pretty much the whole way home. He was a bit groggy and tired - which was an AWESOME change! Maybe they could just give him that set of meds and we would be set each day!! haha!

We are hoping to find out the results in the next week..which will be interesting to say the least!