Wednesday, February 12, 2014

neurology appt and ent

so we went and saw lexi's neurologist . she increased banzel to 3ml,3ml and 10 mls. lexi has an eeg on monday and then she sees her neurologist again the 25 for results of eeg. at that follow up she will then talk about referring us to the person who will do the vns. now for ent. the new ent is very nice. she said that she needs to get the sleep study and look at the video from the bronchoscopy. she said that the sound i hear when lexi is sleeping is her obstructing and that she needs to gather all information before scheduling surgery. she said the surgery will require a hospital stay and thats why she wants to make sure it will benefit lexi. she also said that its a possibility that her chin is small which is causing her to obstruct at night. hopefully after next week she will make a decision

Sunday, February 2, 2014

january update

didn't even realize that i haven't updated since Christmas time. oops the beginning of january we got hit with a big snow storm and artic blast so we was out of school for a few days and out of work as well. at that time my car decided to hate me and break down as well. got it fixed and all is good. janauary was a bad month for seizures. we have increased her banzel and decreased keppra and im thinking keppra was controling the seizures more than i thought. she is going to be having another eeg sometime soon to see what it says. we also just started her on risperdol to see if that will help with meltdowns. im hopeful because something has to give. we just had her iep meeting and the teacher says shes in the 3rd percent of what she should know so we agreed to hold her back and have her repeat kindergarten again next year. the autism specialist said that kids with autism have trouble retaining the information so that explains why one day she seems to know something but the next day she doesn't. she has made progress with writing her name and with making friends. they will be working harder with the ipad and are actually going to see if the new program called lamp will work better for her than proloquo. im all for trying a different talking app if it will help her communicate with her peers and in class. im glad she is learning and is making progress even if it is slow progress. this month her birthday is coming up along with 3 dr appointments so far with probably more being made.