Meds and a proud Momma

We started Jac's HGH shots a week ago (3/26/10). We are calling it a "little poke." The first night we did it it was a big surprise to him as we had not talked about it previously.

(I bought a play medical kit - that has been really great in role playing medical stuff, something we had not done before. Jac's language has progressed to the point that we can discuss things that have happened in the past and things that are going to happen in the future and he can comprehend and remember both the past and the future through language! (I find the development of this sort of language truly amazing and it has been a joy to watch it develop).)

He cried a lot and tried to get away and was very upset for 10 minutes or so after. We are doing the shots after bath and before bed, in the crazy/lull period before the boys fall asleep. The next night we didn't do a bath because we had gotten home very late. Nic and I were already in bed and Joseph tried to give Jac his bath. He cried and cried, "later, later"

We decided not to do his injection that night.
Since then we have only missed one night. Jac went to sleep pretty early, after a long day. We decided that we did not want to give him the injection while he was asleep. I didn't want to violate his trust by doing the injection while he was asleep.
After a few nights of doing the "little poke" I started having Jac participate in preparing the EasyPod and giving the injection. The EasyPod is a really well designed, easy to use device. One of the nice things about it is that you really never see the needle. You turn it on, put the capped needle into the EasyPod, it takes the needle out of the cap and hides it, you place it on the skin, and push the big green button, it gives the injection, you put the cap back on, it puts the used needle into that cap, and you are done! In the demo video they have online a six year old boy is giving himself the injection, with his Mom watching! Jac knows how to press all of the buttons now, with my help. He even gives himself the injection! After we are done he goes and throws the used needle in the "special trash," the sharps container under the bathroom sink.
I will not say that this is easy, but the anxiety level for all of us has gone way down. Before we started doing it I was dreading it for the months after I knew we were going to start, and when we finally started. Now, it has become part of the nightly routine. I tell him, it is time for medicine. And he says, "Squeeze Nicie's medicine (for NIcie's nebulizer)" He helps me prepare Nicie's medicine and turn the nebulizer on, and off, and wash out the nebulizer mask when we are done. Then I get his EasyPod out. It is kept in the refrigerator. He asks to "put the medicine in." We only have to reload the medicine every 21 days right now, which he is always disappointed about. I get an alcohol pad out and clean his skin where are going to give the injection. He doesn;t like this much, and it almost upsets him more than the actual injection. He turns the machine on, I put the needle in, he presses the OK button, then I put it on his skin, which he tries to get away from but once it is there and the green light on the EasyPod comes on, he presses the green button! The injection takes five seconds, and we encourage him to count or watch puppies or marbles of whatever YouTube video we have selected that evening. After the injection is done we say "All done!" and he presses the button to take the needle out. He takes the needle to the special trash and throws it away, and then we go on with what we are doing!

Some nights are easier than others. Tonight he hardly complained. Some nights he still gets pretty upset, but for the most part the upset is gone right after we are done, and we are able to just move on to other things with only a minor upset and disruption. Amazing! Kids are amazing and resilient and I never would have believed this was possible until I watched the transformation from fear to acceptance to routine to go Jac!

I haven't noticed any increase in his appetite. Maybe a small one but he has been sick which always dampens his appetite. We had to take him off the Benecalorie for a week or so because he was throwing up at night.

It feels like he is taller but I am guessing this is just me. We go back after three months on the GH for a weigh-in and height check. We have to do blood work every six months unless we don't see a response to the GH after three months. It feels like he is getting taller and stretching out - staying just as slim but taller. I feel like when I am carrying him he is hitting a different spot at my shoulder, like he can see into my face better when I am carrying him on my hip.

The GH is supposed to improve his bodies' ability to process nutrients from food, so even if he keeps on eating the same amount he should gain weight and grow.

We shall see!