... Her ears feel better, but her head has never stopped hurting.... This seriously sucks!!
Mum
I think we all should encourage Sesame Street to rename Kami to Mini.
Mini and mum and hubby, you are all such an encouragement to us.
That little precious one has no comprehension how many friends she has, and how she is affecting our lives with her love and strength!!
WE LOVE MINI :D WE LOVE MINI :D
MINI FOR PRESIDENT :D
Love, papa Bruce
IMPRESSION:
Abnormal VNG evaluation with all positive findings consistent with CNS lesion. (damn!)
Thank you so much Peter and Paul (now all we need is a Mary ;))
Something is going on - I'm just glad he's willing to look for it.
She had a good day yesterday - ate us out of house and home as usual and slept well.... We'll see how she does at dance class. Her teacher knows everything and just loves her to death. That helps, too.
I wish you all could see how she (doesn't) track. Her eyes go all kinds of whacky ways, but she can read. ( ???)
We're going to whip this - whatever it is.
Mum
He did suggest that we forego the Zerit burning and just dump them in the trash. ;)
Thank you to mjmel for lunch today and for a million other things you did to get us to this point.
I've been reading about sleep problems that people are having on Atripla and Insetress.
Those, we found. Now she's breaking into tears
Just a bit miffed that she can't have a Happy Meal after. Still waiting for Dr. F to let me know whether she needs to be pre-medicated for the procedure.
edited to add: Paul, Hubby thinks Dr. F is married. I think he's single, doesn't wear a ring, but I think he mentioned a daughter. He wears purple and drives a purple car - my favorite color. And, he's a Star Trek fan - just like my Hubby. Not sure how old he is, but I'd say upper 40's to early 50's. It may be worth a trip to Ohio ;0)
edited to add: Paul, Hubby thinks Dr. F is married. I think he's single, doesn't wear a ring, but I think he mentioned a daughter. He wears purple and drives a purple car - my favorite color. And, he's a Star Trek fan - just like my Hubby. Not sure how old he is, but I'd say upper 40's to early 50's. It may be worth a trip to Ohio ;0)
Just a real quick update / change of plans. Mim will NOT be going to the eye specialist on Thurs. There are 2 very good reasons for it. First, he's her ex-PID's husband. Second, he's seen her every 3 - 6 mths since she was 8mths old and has never tested her for tracking issues, let alone diagnosed her with them. If you remember, it was her ENT that noticed the problem.
She still needs to gain 3lbs and has to do it while maintaining a low LDL, not raising her cholesterol, and lowering her tris. Besides eating hay, anyone have any suggestions?
Bought dark, whole flax seeds yesterday for Mim. I ground some up and gave her a spoonful. She gagged and sputtered, but eventually swallowed it. Our youngest son loved it and ate 4 spoonfuls.
Yesterday got her some Isopure (thanks, Philly) protein shake mix -orange, pineapple, banana flavored. I mixed it with milk, orange juice, and a banana. She hates it. I tried bribing her with sugar cereal, but it's not working. She can be stubborn when she wants to be. Now she has to go potty - AFTER she finishes her smoothie. I know, I'm mean, but she needs to drink it.
Problem with Carnation is that it's also loaded with sugar which will raise her tris. We're now trying a different approach. I bought a quart of vanilla icecream made with Splenda. She's getting her protein powder as a shake. I also added a couple of fresh strawberries and promised that once she's finished this container, we'll talk to Dr. F about trying something else. For now, she's satisfied. Besides, what other kid do you know who gets "forced" milk shakes for breakfast?
I know where she is coming from back when I had to try to regain all the weight I had lost I tried so many different protein drinks ... hated all of them.
Carnation instant breakfast drinks ** if mixed with milk** has 13 grams of protein ** 5 grams without** so not exactly HIGH in protein but every little bit helps ... and I liked it. ;)
Thank you, Inch, for the links. I bought the organic vanilla silk (1 gallon) and added her chocolate syrup to it (Hershey's made with Splenda). I didn't tell her what it was for fear she'd not drink it just because. She drank the whole glass and asked for more. After she'd had a couple of glasses, we told her what it was. She thought "silk" sounded cool. She had another glass last night with her beignets ;D
Have a great weekend!
Mum
yeah@! I'm so suggestible that when I read "beignets" I now have to go out and get some.......lol
ie. oral marajuana (forgot the name of the drug)
Marinol - that's it. LOL...but there is a slight age difference between the two of you. ;)
Mum
mmmm BACON!!
So, "chronic disease progression", whatever. It's just Mim's progression despite a chronic disease.
Mim's vision is failing again. Several times during the day, it just goes out. She said sometimes everything gets really blurry and other times things are just "gone". I asked her if the world turns black and she said, "only in spots". I emailed DocF to let him know. He's going to contact Cleveland Clinic and see if they have a peds neurologist who specializes in neuro-occular events. LOL.."events" - at least it's better than "chronic disease progression". Seems the past 17mths have been one giant event.
Mum
The pageant was yesterday afternoon and she did SO well!! She didn't win, but it doesn't matter. Hubby and I were more nervous than she was. I thought I was going to faint during the interview portion....
After the talent portion, I bawled!!! I couldn't stop crying. 2 girls after her and I was still sobbing and quietly clapping for my angel. I've never been so proud of her. She got a rose and a trophy for participating. Her rose is in a vase on our counter. Her trophy is in her bed - she slept with it last night.
She asked me last night if she's going to lose her vision. It keeps going in and out. I told her I didn't know, but probably not. She asked if it did, if she could get a big dog to walk her around. I had to smile - and told her yes. So she drew me a picture of what she wants her dog to look like since, after all, if her vision is gone, she won't be able to pick it out. It's hanging on our 'fridge.
I told her when she's finished talking to people, she should shake their hand ;DROFLMAO that cracked me up!
Finally, Mim said (as only she can), "Yeah, but you're old. I'm not."ROFLMAO :D ;D
"Really? Then either you're not very smart or you don't know what a disability is 'cause I sure do have a bunch of them!"LOL You go Mim! That little girl of yours sure does has some spirit and some wisdom beyond her years. Thankfully it's that attitude that is going to keep her going (and keep driving you crazy LOL) and keep getting her through the challenges that life is flinging at her. ;)