Saturday, May 21, 2011

Updates. :)

Today has been loooong. I was up last night with a cough and got bad sleep..Madie has been crying alot and trying to poop..Miles took her out for a little while to Target and to get her hair trimmed. I just don't have the heart to take her..lol
I tried hard to take a nap but just couldn't clear my mind enough to relax and drift off. kept thinking that they would come home just when I did. Sigh.
Miralax has not worked in helping Madie with her issues...I hate hate resorting to suppositories but today we had too..poor kid. Its been awhile since I gave it to her and still no poo..I dont get it..we can only wait.
Diet is going well. We keep chugging along. Dont know how long we will have her on it. Unsure what the plan is with that. I am really afriad that if we take her off she will be back to having bad seizures..which have been dramatically reduced..and medication is stil the same. doing what it does. ehhhh...make her sleepy? eh...
Madie seems "stuck" like not too much progression..I worry like you would not believe that she will be chair bound her whole life. She is certainly more alert and awake since we have began the diet..It HAS benefited her. But Development wise..Im ready to see MORE. :( :(
Sometimes she gets her little hands on the edge of table or on her noisy box bar and lifts her little bum off the ground..still sitting Indian style but lifting her bum up..so stinkin cute! Will she someday bring herself to a stand?? I will never know. Madie is famous for doing things on her terms.
May be time to have an EEG in the next few months er so..but no word on that and I just may have to suggest it to them..but if its MY idea it will take awhile for them to agree we all know how that rolls. I just assume if we continue to see seizures here and there what is the point?
Seizures are just as is now. No increase..here and there when we least expect it she has one..but overall a happy girl. Doing well at Preschool too! Her teachers remain smitten with her and more patient than I could ever be! We are beyond blessed with the wonderful school system in our town.
Unless she is constipated! GAH!
Well its nearly 8 and time for what we call Madies "Potion" and her meds etc.
Tomorrow plans for Post Apocalyptic Picnic at the families house. Ill make banana cake. But Oh dang no wallnuts....haha
Can I just say that as I was typing Madie was letting air from her pursed lips and wistled...LOL!
((hugs))

2 comments:

Sinead said...

Try half an adult fleet enema. You will find a list of the allowable ones on the charlie foundation website. I think you are not supposed to do suppositories with keto as they have carbs. I find the fleets to be excellent.

Glad to hear she is happy.

Zoey's mom said...

Potty issues have been an issue for Zoey since the get go.We have tried everything that you could imagine and still,issues.Doesn't seem fair that these sweet little things,after all they have been through,have to have issues with such a seemingly effortless bodily function,does it?

I can almost picture exactly the way Madie is edging up on things.Zoey does the exact same thing but with one hand!I totally understand the issue of the chair.I really do.Try not to worry.Take one day at a time and when you least expect it,Madie will probably blow you away with what she is capable of.

I think often,our children that struggle in physical and cognitive areas,just hit these periods of time where there is no progression and then,bam,a growth spurt.Madie is probably saving herself for a big one!

Enjoy your post Apocalyptic Picnic ... what a great and may I say, hilarious name for it!