| Later updates | Aaron update 149 |
| Subject: Aaron update 149 Date: Wednesday, September 15, 2004 5:03 PM From: Kevin Quick To: Aaron Update List August was a rough month for us (it was just one of those challenging months, with things hitting us from almost all angles, it seemed), but thankfully, we got through it without any major medical problems, since Aaron was uninsured for the month. As of September 1, Aaron is insured again, with his new MRMIP policy. September began with our first cold in two years. All four of us are getting over it now. Thankfully, it was not a major event for Aaron; he sailed through it as any normal kid would: runny nose, cough, etc., but no pneumonia or RSV. We now have some confidence that he can get through a mild cold without complications, and that his immune system is working just fine. Today we met with Dr. Perr, Aaron's gastroenterologist, in Santa Rosa. The bottom line from her is that Aaron's slow growth rate has become seriously worrisome. Even correcting for Aaron's premature birth, he's now five pounds below where we'd like him to be (we weighed him this morning, and rejoiced that he had gained another 1/4 pound, so he's now at 14.75 pounds). He's only gained 1/4 pound per month for the past 12 months, which is only 3 pounds in the past year. Dr. Perr suggested to us that if Aaron doesn't start gaining substantial weight very soon, we could be looking at irreversible damage to both his body and his brain. She said that he's just not taking in the calories that he needs for good body and brain development, and that these first few years of his life are critical years for development. If he doesn't start growing now, he may suffer for it for the rest of his life. So, Dr. Perr recommended that we think seriously about going with a g-tube. A g-tube is a tube that would be surgically implanted through Aaron's abdomen and into his stomach, through which we could feed him the extra 50% or so nutrition that he needs in order to start growing well. Dr. Perr suggested that if Aaron's growth rate hasn't made a major improvement in the next month, that we should go with the tube. She also suggested that the sooner we make the decision, the sooner Aaron could be benefiting from the added calories. The g-tube option had been mentioned to us two or three times over the past year or so, but this was the first time that Aaron's primary doctor had seriously recommended that we go with it. We're thinking that in the next few days, we'll probably set the wheels in motion to have the surgery done in San Francisco. Barring a genuine miracle, we now believe that this is our most responsible course of action. If any of you who have more faith than we do would like to pray for a miracle, which would negate the need for the surgery, we would certainly appreciate your prayers to that effect. Otherwise, with our focus on Aaron's best interests, rather than on our own personal preferences, we think the time is probably right to go with the g-tube. We've tried everything else that we know how to do, and "everything else," unfortunately, just isn't cutting it. If anyone has experience with kids with g-tubes, we'd love to have your input. I know my sister Cheryl in Chicago, with her baby girl Quincy, went through this, and her words to me were, "It'll make your lives easier." We're all for that; Kathleen especially has just been knocking herself out trying to get every particle of food that she can into Aaron, and has been dealing (admirably well, I must say, in spite of her tears of frustration now and then) with the daily throw-ups, etc. If Aaron were to commence some significant growth with the cereal port (yes, Kevin lays claim to coining the term; has anyone else heard of it before?), we'd be very, very happy. Aaron is almost walking now; he can walk a distance of about 6 feet. He continues to be a real charmer and heart-warmer. He especially likes examining things in great detail and figuring out how mechanical things work. He loves finding and pushing buttons, and turning pages in books (more so than listening to the stories). Robin is growing like a weed, physically and ability-wise. She started crawling and sitting up last week, and now she's following Aaron around everywhere, playing with his feet, taking his bottle away from him, and pulling his hair. Aaron is usually somewhat ambivalent towards her, but Kathleen and I have witnessed some very special moments when the two of them have met head to head in doorways, for instance, and, touching foreheads together, have smiled and cooed at each other. Too precious! We went to the Lake County Fair last Saturday. The attached picture was taken there, in front of a goat pen. (For some reason, Robin was just hysterically happy to see the goats; she screamed and grabbed their ears, etc.) Our insurance agent raises goats and was showing her animals at the fair; a friend of hers took the picture for us. Thanks for your listening ears. We very much appreciate your prayers and kind words. Again, if anyone has words of wisdom on the g-tube thing, please let us know. We only want to do what's best for Aaron, and we trust that God will continue to meet our needs as we continue on with this adventure. Love, Kevin, Kathleen, Aaron and Robin |
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