Ian and I came to Gibbon this morning. We are headed to Lincoln for a neurology appointment tomorrow morning with his seizure doctor. Our kids sure love grandma Ruthies park, just a block away. This is Ians newest feat: swinging by himself! He finally has enough core strength and arm strength and coordination to not fall off. It is a little hard at times to let him do it, but hes doing very well. Our next visit to St. Louis has been moved to the first week of November. Mandy was quite upset that we wouldnt be home for Halloween, so we were able to get it moved by one week. This also proves advantageous for another reason. We were recently invited to be the guest family at a gala in November for Angels Among Us. Its in Omaha, but we will be on our way home from St. Louis, so we wont have to make an extra trip. We are excited and also grateful to this organization which has been assisting us. Ians increased seizure medicine is really helping with his speech. However, his growth hormone level has not come down at all. The hormone implant has brought down his puberty hormones, but not the growth hormone. It is still at the level that a typical 17 or 18-year-old boy would be. And he eats like hes 17 or 18! His endocrinologist would still like to continue to monitor his hormone level monthly. The game plan has been to wait to make a decision until we go back to St. Louis in November. We have hesitations with that we will be communicating with her. We continue to watch him grow at rates that are above where an almost 5-year-old should be. He now has two loose teeth and some molars growing in that typically dont for another year. We do beg for prayers for wisdom and research for these doctors. This really is rare and its new territory for everybody. We are trying not to be fearful with ending chemo. The fact that the growth hormone is so high, it tells all of him to grow--possibly even tumors. Now with no chemo to hold it in check, what will happen? Trust and faith. Trust and faith. In nonmedical news, Dakota, Mandys new dog, ate Ians shoe the other night. This is not been a typical problem for her, so were assuming that something got spilled on it that attracted her. Then yesterday, she brought a baby snake into the house. While I was trying to find something to scoop it into, Ian stepped on it! You shouldve heard Mandy scream! It was released to be free and in the wild outside. I think Dakota needs a fan page! :-) she is making it easier to wait for Ians dog. :-) It was nice to not have Ian fuss when we told him we were leaving for another trip. Being able to say no port doctor and no pokes sure makes a difference. This is an easy appointment--only about 45 minutes in the office. I still didnt want to leave North Platte though. We are nearing the number of 50 medical trips taken in the last 15 months. Ugh. The pay off is having Ian back. He really was just the shell of a little boy because of the uncontrolled seizures and the growth of the tumors. Its so nice to have his personality back and now to watch his progress in mental and social and physical ways too. :-) thank you for your prayers and support!!
Posted on: Sun, 14 Sep 2014 18:39:55 +0000
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