Thursday April 30, 2015
Aaron is starting to do better. His seizures have stated to decrease with the increase in Onfi. So far he is tolerating the increase this time. Dr K (neuro) is increasing with a suspension of Onfi in hopes that he would tolerate it better. They have gone from 20-25 to now 5-6 a day. This is the drug of choice for LGS. I am starting to see the sparkle come back in his eyes. I have missed his sweet giggle and smile. He did start giving me kisses again the other day. I talked with neuro today and his sleep study came back very abnormal. No surprise there because he does not sleep well at night. He sleeps for a few hours and then is up for most of the night. Dr K wants his to see the ENT to see about the removal of his tonsils and adenoids. I am not sure that is an option due to his blood clotting issue. She said if they say no then they will need to treat the sleep apnea. I am hoping it is just with some extra O2. He did so well during the study. When he is O2 in the hospital he sleeps really well. I am not sure that I will get him to wear a mask at night. He does not like his face covered and I think the mask will scare him. Praying for a treatment that will work and that he will tolerate.
I LOVE this little boy. I am so excited to go to Disney World again this fall. With never know about Aaron from day to day so we are going to try and go at least once a year. He LOVES it there. All of the sounds and people make him laugh the entire time. Looking forward to making lots of happy memories. Can't wait for summer vacation!!! LOVE LOVE LOVE being a mom!!!!!
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