The past few days have been a whirlwind of activity for Landon with traveling and appointments. Monday morning, Karen and Jamee left from Elmwood for Topeka to take him to his neurology consult in Topeka with a pediatric neurology specialist. They picked up our friend Jess in Manhattan and took her along to help with translation of all the medical terminology. (Have I mentioned what great friends and family we have?) The appointment yielded some actual results, in contrast to many of our previous appointments. Dr. Katz found that Landon had fewer muscular reflexes during this meeting and a review of his imaging data showed no change in his brain's condition. An EEG showed that he was having subclinical seizures, which is a cause for concern and will require an additional medication for Landon each day.
The conclusions derived from the appointment are a step back for Landon. The lack of reflexes, and in fact a decrease in reflexes, is very grim. This could mean that Landon's condition is degenerative and is worsening with time. The subclinical seizures showed that Goat's phenobarb was not an adequate measure to control his abnormal functions and he will receive an additional anticonvulsant starting today. Dr. Katz has been transparent with us and let us know that Landon's condition is very serious and his prognosis has not improved and may have perhaps worsened. He will see Dr. Katz again in a month.
Landon had another appointment with the geneticist today and the news we received from the neurologist was reinforced. Landon had fewer reflexes and a review of his ultrasound scans showed a small brain from early on in development. Dr. Schmidt has prepared us for the worst and cautioned us that Landon may be worsening in condition as well. He discovered a heart murmur today that was not there a few weeks ago, a change that is concerning and may indicate that Landon's nervous system has indeed shown signs of degeneration. We are debating having an G-Button placed. The operation would make our lives easier but if Landon only has a short time left with us we would hate to put him through so much discomfort and a major surgery. No decision about Landon is easy at this point.
Through all of this, Karen and I are assured in the knowledge that this is not a punishment to us. It is not about us at all, but rather about being a blessing to a little boy that needs some extra help. Landon was going to be born someday, whether it was to Karen and I or someone else. We firmly believe that we have been prepared for and chosen for this task because we can be extraordinary parents to a little boy that needs extraordinary care. Each day we are striving to show compassion and love in our actions and making Landon's life as wonderful as it can possibly be.
"Man often becomes what he believes himself to be. If I keep on saying to
myself that I cannot do a certain thing, it is possible that I may end
by really becoming incapable of doing it. On the contrary, if I have the
belief that I can do it, I shall surely acquire the capacity to do it
even if I may not have it at the beginning." - Mahatma Gandhi