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!

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??

Our visit to Children's today went.....

not so well!

We found out that Big Al weighs the same (on their scale) as he did 6 months ago. That was not as concerning as the fact that he only grew 1mm over 6 months. His endo doctor there is really good - I really like her! So, we now have to do the growth hormone simulation test. Basically, Big Al and I get to spend a day at Children's, him hooked up with an IV, and me bored out of my gord! Looks like that might be done right after Thanksgiving. Depending on the test results, will depend on which route we will have to take.

The doc was not too happy with Big Al and his "lack of caring" about his health. We can tell too, that "growing" is not really a priority for him.... even though we have told him, as have others, the importance of being healthy and having a healthy reserve in his body. It has been exhausting with him so far... but the doc at Children's is ready to start the full gamet of testing everything if this hormone test comes back fine..... looks like a New Year of medical bills!

I still am offering my fat transplant!!!