Same drug, new study. This study is called open label and the Dr. can rx what she needs. Well finally folks we are getting somewhere! Last week he rx’d her 5mg 2x a day and although there was a small improvement, it certainly wasn’t sing songs of praise worthy. But this past Tuesday he put her on 10mg 2x a day and we are seeing some big improvements. Neuro really thinks this is the right drug for Lily and so far so good. Now him asking dating advice was a little off the subject and to be honest a little strange, but he is getting my kid a good drug, that IS HELPING, and we don’t have to pay for it, hell he can come to my house, lie on my couch, cry his eyes out and I won’t charge him a dime. I’ll even try to find someone for him. Although he may never ask my advice again after I told him to go to church and he said he isn’t a Christian and I just said, “So.”
Anyway, Lily is doing well. She is still trying to get over a runny nose. I know it used to be norm for her, but we have gone MONTHS without it running then two weeks ago it started and it has yet to let up. Our dogs are shedding bad, that could be an issue.
And I am afraid to report that I did something drastic with Lil bug yesterday. Chopped off her gorgeous hair. I am just so over our fights, DAILY over brushing her darn hair. I mean it was so long and every day it would be a tangled mess. Here are the before and after… don’t get mad, it will grow back, besides think of all the none fighting we will be doing now.
See she is still cute.
Calm Amongst the Chaos 
Wonderful!! I’m so glad that she’s finally getting the medication she was supposed to get months ago…and it’s working…even better!!! I think she looks ADORABLE with her hair short!! Even cuter than with it long! And it will save both of you a lot of stress!! It’s good to finally hear an update…I’ve been checking daily. I hope your getaway in NY went well!! Keep us posted!Tera
ltjxoShe looks adorable! I did the exact same thing with Sarah’s hair this spring. Even though the hair was beautiful, the crying every morning was finally not worth it to brush it out.
Hello! I have been reading your blog for a long time and I just wanted to de-lurk myself and say hi. Hi! That’s great that you are past the possible placebo part of the study and on to finding out what works best for your little girl. Her new haircut is very cute! I am a little wistful that Lily is even capable of growing such lovely long hair. My daughter just turned 6 and she still has wispy shoulder length baby hair full of split ends. Poor thing.
I have been checking daily sometimes more often and was wondering what you were doing as it seems so long since your last post.Delighted to hear that Lily seems to at last be on medication that is going to help her.She looks really pretty still even with her short hair. It is a hard enough job dealing with a youngster’s long hair tangles when they can communicate with you let alone when they can’t. It is so hard to get through to young ones without problems that you are not trying to hurt them but that it is important to get all the tangles out everyday otherwise it would become a dreadful mess. Before my Chemo I had hair that went well below my waist but have non at all now. Mind you even if it grows back I am too old now for really long hair (50+)and it is so grey these days, it used to be jet black.How are the School Holidays coming along, have you guys managed to do anything interesting lately.We just had our 25th Wedding Anniversary and went away for a night and had a fantastic meal. Should do things like that more often.Take Care thinking of you often and checking on you even more.Lots of Love Carolynn xxx 🙂
I think her short hair looks great!!!