Ready or not, today, Obsidian is starting growth hormone therapy. Tonight, a nurse is coming to the house to do the training. He does not know this. As he is 2.5, I don't know how much he would understand if I tried to explain. I'm guessing he would understand the basics of "You will now get a shot everyday. For always." He knows what shots are as I have type 1 diabetes, so it is something that has always been part of his life. He hasn't been the one getting injections, but the idea of shots is a concept that he sees at home. He knows how a shot feels. I don't anticipate Obsidian is going to be happy about this. I don't know how much he will understand how these shots will (hopefully) help him grow big and be able to play with other kids longer before getting tired. I'm guessing he will understand more of it than we expect he does.
I'm not even vaguely concerned about the training. I've questioned myself about this, but each time I come up with the answer, nope. I don't think it will be much different than using an insulin pen. I know how to give injections on both myself and others. I've done it regularly (to both myself and others). I haven't given them to anyone who has been fighting against it. I hope I don't have to get too much experience with that. In the back of my head, I'm thinking I might get a lot of experience with that (but that is an entirely different issue than the training and the mechanics of how to give an injection).
I'm worried it won't work as hoped. I'm worried that Obsidian will be one of the unlucky ones that have one of the serious side effects (largest one being increase in intercranial pressure... partly because this is just bad, partly because Obsidian doesn't have the verbal skills to completely express the symptoms accurately as soon as they start appearing). A dislocated/broken hip would be bad as well. Then past the side effects part, I'm worried he won't start growing as hoped. There is not blood test that we can see if he is working right away. It is simply to wait 6 months to a year and see if he growth velocity has improved. I'm worried that ped. endo that we are meeting with later this month will not agree with this course of action and we will have to decide. I'm trying hard to "not barrow trouble". It is hard to not get really excited with the idea that the growth hurdle for Obsidian is about to be passed, I'm afraid of getting too excited about growth to be crushed months from now when nothing has changed. Which is obviously a possibility. Particularly since Obsidian is not a "textbook" growth hormone deficient (GHD) kid.
Whether or not if I'm mentally ready for it, today is the day. I don't think I would every be fully "ready" for this leap.
UPDATE: So training was all of 15 minutes, if that. Obsidian did alright. When he realized he was about to get a shot, he tried to grab it out of my hand and said "No want it. No. Don't" I did it, and then he stopped fussing and was smiling at me and the nurse and talking something about trains and fire engines.
Monday, January 31, 2011
Sunday, January 30, 2011
In someone else's words...
"Once our eyes are opened, we can't pretend we don't know what to do. God, who weighs our hearts and keeps our souls, knows what we know, and holds us responsible to act." Prov. 24:12
Saturday, January 29, 2011
Tea Party
If anyone was wondering what you need to host a tea party if you are a 4 year old boy:
- Hot Chocolate with marshmallows (this occasionally changes to juice)
- Little 4 oz cups (like you find in bathrooms) to serve the hot chocolate in
- Sugar cookies in the shape of the letters of the names of each of the people attending
- Nerf guns
Friday, January 28, 2011
Grief
I've been/am in a foul mood today. My temper is short (which can be a chronic problem of mine). After overreacting an embarrassing number of times to something one of my boys did, I'm sitting and thinking to why I keep doing this. I had a short fuse as a child, but for the most part I can control it. Typically it is if I'm under stress of some sort that I can't. Obsidian is napping, and Pyrope is as well (which is very unusual, and come 10 tonight I'll be regretting it, he is snuggling next to me on the couch so I doubt the real sleep will be long).
During ice skating lessons for Pyrope, Obsidian asked to wear skates and try. I've been encouraging this. He didn't have the strength or balance to stand up on the skates without help, but he enjoyed himself for 20 minutes and was trying with me helping. I got home and there was a message on my answering machine to place the order for the growth hormone that Obsidian will be starting. Listening to the message on the answering machine, I couldn't figure out the phone number to call. Part of it was the lady was just talking fast, the other part I know was my dyslexia (which once again only really significantly affects me at this point if I'm really stressed). After trying at least a dozen times, I decide to just put Obsidian down for his nap, then call the general mail order pharmacy line (which it is a specialty item, so there is a different number, but I knew that eventually I would be connected to the right spot if I called the general line). 23 minutes later, the medication was ordered, it will ship today and be here sometime tomorrow, council by the pharmacist (which was mainly going over all of the possible side effects, some of which are scary, particularly with someone's Obsidian's age because he can't communicate as well as an older child or adult), and called a second program so the referral for the nurse to come out to our house to train us (mainly me) on how to administer it.
I really hope that this helps with Obsidian's growth issues and helps with his gross motor delays as well. I'm scared that they won't. I'm scared that he will have one of the serious side effects. I'm scared that this won't help. I'm scared that some of the other signs that Obsidian shows that are not typically associated with GHD really should be cluing in to the doctors that this is not the problem. I'm dreading Obsidian's reaction to having a shot every day. He will get over it, so this is pretty far down on my list of worries. I'm sad that even if growth hormone therapy works, it is really a patch more than anything else. It is not "fixing" anything, just replacing something on the outside. I'm sad that if it works, there is a very good chance Obsidian will have to do this every day for the rest of his life (if not for the rest of his life, at least through his teenage years).
The biggest thing is that underlying all of this is that I'm sad, a level of grief, that my child does not appear to be dealt one of the better hands health wise. It could be far far far worse, but it is still not what I had dreamed and prayed and hoped for him.
I know that after this period of grief, there will be some level of acceptance. If I work towards it. Most of my fears will abate. Obsidian will be used to the shots. My fears of side effects will fade. We will know if it is working or not. This will not "pass", but it won't feel as sharp as it does today.
During ice skating lessons for Pyrope, Obsidian asked to wear skates and try. I've been encouraging this. He didn't have the strength or balance to stand up on the skates without help, but he enjoyed himself for 20 minutes and was trying with me helping. I got home and there was a message on my answering machine to place the order for the growth hormone that Obsidian will be starting. Listening to the message on the answering machine, I couldn't figure out the phone number to call. Part of it was the lady was just talking fast, the other part I know was my dyslexia (which once again only really significantly affects me at this point if I'm really stressed). After trying at least a dozen times, I decide to just put Obsidian down for his nap, then call the general mail order pharmacy line (which it is a specialty item, so there is a different number, but I knew that eventually I would be connected to the right spot if I called the general line). 23 minutes later, the medication was ordered, it will ship today and be here sometime tomorrow, council by the pharmacist (which was mainly going over all of the possible side effects, some of which are scary, particularly with someone's Obsidian's age because he can't communicate as well as an older child or adult), and called a second program so the referral for the nurse to come out to our house to train us (mainly me) on how to administer it.
I really hope that this helps with Obsidian's growth issues and helps with his gross motor delays as well. I'm scared that they won't. I'm scared that he will have one of the serious side effects. I'm scared that this won't help. I'm scared that some of the other signs that Obsidian shows that are not typically associated with GHD really should be cluing in to the doctors that this is not the problem. I'm dreading Obsidian's reaction to having a shot every day. He will get over it, so this is pretty far down on my list of worries. I'm sad that even if growth hormone therapy works, it is really a patch more than anything else. It is not "fixing" anything, just replacing something on the outside. I'm sad that if it works, there is a very good chance Obsidian will have to do this every day for the rest of his life (if not for the rest of his life, at least through his teenage years).
The biggest thing is that underlying all of this is that I'm sad, a level of grief, that my child does not appear to be dealt one of the better hands health wise. It could be far far far worse, but it is still not what I had dreamed and prayed and hoped for him.
I know that after this period of grief, there will be some level of acceptance. If I work towards it. Most of my fears will abate. Obsidian will be used to the shots. My fears of side effects will fade. We will know if it is working or not. This will not "pass", but it won't feel as sharp as it does today.
Thursday, January 27, 2011
Thankful Thursday
- Obsidian's MRI is done and that all is "normal"
- That things are moving fairly quickly forward on the medical issues with Obsidian, by early next week, he will have started on growth hormone
- For at least the next year, Obsidian's growth hormone therapy shouldn't cost us anything out of pocket after we reach our deductible (which I think we already have)
- How much my kids love my mom, and how much my mom loves my kids
- J&J Soothing Vapors Bath and cool mist humidifiers
- The big leaps Pyrope has recently been making in speech and some concepts
- Co-workers that pick up my slack on the days I really need it
- Friends who listen to my worries and not minimize them
- Finding out Rick Riordan's new book is going to be released May 3rd, I've pre-order it already
Wednesday, January 26, 2011
Monday, January 24, 2011
Normal
Before I even made it home from the MRI (thanks to Obsidian not reacting well to coming out of the inhaled anesthesia, was advised to avoid having go under inhaled anesthesia again, or at least to warn the doctors of how violent he was coming out of it), I got a phone call. The MRI of his brain and pituitary are normal. Yea! I was told it might be a few weeks before our insurance gets back with us on the growth hormone and if they are going to require a growth hormone stimulation test.
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