Oh medication, how I loathe and love you at the same time!
Bebo is currently on phenobarbital twice a day, it's getting very hard to give it to her as she hates thin liquids. I asked Dr. M if we could possibly (please, please, please) stop using it and see if her seizures return. Dr. M feels like we should wait a few more months.
She is also on Ranitidine four times a day, which doesn't seem to be helping (I thought that's what the fundo was for!!!) Reflux has been better since we started solids, so I tend to offer solids a lot! I've started making my own baby food, it makes me feel like I am doing something for her. I exclusively pumped for three months and that still doesn't feel like enough.
We recently started lansoyl which I was hesitant to put her on as I don't want her to depend on a laxative... but it's working. We are still using thickened formula and I mean THICK, she likes it like pancake batter. We are gradually thinning it, but once it gets to a certain point she starts refusing it. I am still on the fence about feeding her on demand. I tend to do the every 3-4 hour thing. That hardly works! I don't know what to do... any ideas??
I really enjoy your blog site it's very creative. Just to inform you I will be following your blogs regularly as I want to keep up to date with my little miss B. :) love you all.
ReplyDeleteJ.M
I think that this is not only a helpful tool for other parents who may have a child with 1P36. But an excellent outlet for yourself (& daddy). So let the world hear all about one of my favorite little girls. I am so proud of you Ashley!
ReplyDeleteWhat a wonderful informative thing to do. Education is key to not only yourself, but for all family and friends as well as strangers who are connected to IP36 Syndrome. I believe it takes a very special person to raise a child with a developmental disbality and you are one of those special people, Ashley.
ReplyDeleteLisa Runham
Hey Ashley - this is such a great idea. Though I do not know you well...I am proud of you and your work on this. You are so lucky to have two wonderful little girls.
ReplyDeleteThis is GREAT! I love it. It is so great that you are doing this. You will be able to help alot of people just by writting in your everyday life things with Little Ms. B. You and other families will be able to share in all the little things and help eachother through out all your struggles and successes.
ReplyDeleteLove you guys!
Leesha