Landon had his second neurology consultation yesterday. I know many of you have been anxious to hear the update from the visit but unfortunately we did not get much good news. Landon's head has not grown significantly and Dr. Katz thinks that the development we saw in our meeting in Omaha may have been due to variation in measurement techniques. There has been minimal change in Landon's reflexes, although he may have slightly stronger reactions to some stimuli than originally thought because he was more awake during this visit than the last. That being said, he is still quite deficient in his reflexes, particularly those that deal with the feeling in his feet and toes.
The good news from our meeting is that Landon isn't getting worse. The arrhythmia he was diagnosed with is common and doesn't appear to getting worse. He hasn't had a seizure since May 20th, which is a truly great blessing. His seizure activity is actually stable enough that we are beginning to wean him off of the phenobarbital, the first anticonvulsant he was on. Phenobarb can make people drowsy and is hard on the liver so we are happy to be reducing his dose. It also would be nice to only have one medication to administer so that we can minimize any side-effects from drug interactions. Landon is also on Levitiracetam (aka Keppra).
Dr. Katz spent the majority of our meeting talking about how we were doing psychologically and emotionally. He suggested a book to us called "A Difference in the Family" about how to communicate our feelings and needs to our family and friends and about what types of feelings are normal when you have a child with a disability as severe as Landon's. We haven't had the opportunity to get a copy yet but I'm looking forward to reading it. He said that although it was written in the seventies, he has been suggesting it for 30 years and hasn't read anything better yet. He also suggested that we take time to discuss what we would do in a worst case scenario should Landon encounter a serious health complication. Goat is at a very high risk for some life-threatening complications and so we need to be prepared for these possibilities.
Recently we have been trying soy formula with Landon instead of the sensitive stomach formula he was on and it seems to be helping with his gassy spells, particularly early in the morning after his 5 am feeding. Hopefully he will eventually stay asleep through that time of day. I think if we could get him to sleep right after his 1 am and 5 am feedings we would have a better chance of straightening out his days and nights. As it is, he still likes to be up in the night and prefers to sleep during the day.
Karen and I would like to thank everyone who has been so kind and expressed their concern about our well being, mentally, physically, emotionally, and spiritually. Landon has been a challenge in ways I never could have understood but he has never been a burden. Rather, he gives us inspiration to work harder, both in our daily activities and on ourselves as individuals. We look forward to each day and, while we are certainly tired sometimes, we try to keep energetic and enthusiastic.
We are very anxious for Landon's operation on the 23rd and getting to see our baby boy without tape and a tube for the rest of his life. That is the current milestone we are striving for and we are planning for lots of pictures once you can see his face. Bless you all and if you have any questions, please comment or message on the facebook page and we will try to answer you directly.