Tag: decoding treasure

Dr said ‘WE’ may want to give Keira her shot every other day – I took that as a “Do it if you think we should” suggestion and gave her the shot this morning.
I can’t believe how she’s changed – she hasn’t eaten a book or put anything in her mouth since yesterday afternoon!

Keira Report.
I ran out side and ended up moving snow for about 5 minutes. When I came in Keira held up the hot dogs and asked for one.
Me: We’re not having hot dogs now, you can have one for lunch.
Keira: What time is it?
Me: 8:30.
Keira: Breakfast.
Me: You had breakfast
Keira: Lea help! Hungry.
Me: What do you want?
Keira: Chips.
Can You Believe It!!!! That is the most conversation anyone has ever gotten out of Keira!

Brought Keira to the DR today and found out I am giving her the injection correctly! YAY!! He told me that it’s not common, but not unheard of to have such a quick response.

This I may have given Keira the shot incorrectly. She is already limiting the things she puts in her mouth – last night she didn’t chew on anything! It shouldn’t have worked that fast unless it was given in the muscle and if it’s given in the muscle its not supposed to have as many lasting effects – or so I’ve read. But WOW what a difference 24 hours made! Calling the DR now and asking if I can bring Keira with me tomorrow to have someone show me the right way.

Keira got her 1st injection today – she did great!

Keira stands at the bathroom door and yells “Ali Help! Ann Help! Leah Help!”
I walk over “Keira, do you need help?”
She looks around me “Ali-eeeeeeeee?”
Thanks Kid! lol

Just got back from a meeting with our new DAN Dr. – I have such a good feeling about him. I feel so much better than after the last autism doctor we saw – she was worthless.
We’re going to start Keira on the MethlB12 and he’s going to run some tests. I’m a little nervous about the shots, but we have to do something my poor child is suffering.
Already got a call from the Pharmacy, they will have the formula ready as early as Monday. YAY US!! Fingers Crossed and lots of prayers.
**********
Added Note: WOW those are going to be expensive!

Just in case the attachments didn’t go through the filter.
https://emailedee.com/img/Katie1.jpg
https://emailedee.com/img/Katie2.jpg

Without realizing it, I just spent that last hour looking at images of Keira’s brain (Thanks to MMC’s fast image CD!) It’s amazing. But she’s amazing, so I should have expected that!

Keira fell sleep standing up leaning over the arm of the couch – at 7 pm – it’s going to be a VERY LONG NIGHT!

This gluten free diet has one terrible side effect – Keira demanding to constantly eat is worse than it has ever been. She’s eaten more books in the last few days then ever before. She mouths everything in site – it was bad before, NOW mommy is reaching a breaking point, we may go back to Gluten extremely fast. We’re seeing a DAN DR this week and if he doesn’t have answers, meds or something – the little princess is going to have Apple Jacks 3 meals a day! {FaceBook status update}

Unbelievable evening with Keira. She was wound. Ate 4 books, ripped them right in front of me. Biting her arms, banging her head. I couldn’t keep up with the mess, I was chasing her around with my supper in one hand and pulling everything out of her hands with the other. During dinner she ransacked the fridge. Sigh – We’re 2 weeks into this Gluten free diet and the mouthing is 100 times WORSE!! She doesn’t seem in pain when she wakes up, but she’s sleeping less. This is the first time I can honestly say that I can’t wait to drop Keira off at school tomorrow – I’m about to start pounding my head against the wall.

Questions from school about Keira’s sleeping:
1) What does Keira’s bedtime routine look like?
We’ve tried several, each made bed time much more difficult. Now we eat dinner, do a tubby then wait until Keira starts to put herself in bed, right now that’s usually around 8, that’s when we grab her and brush her teeth, we let her go and she runs back to bed. Daddy sings her a song and usually by the end she out cold.
2)What does the routine look like from when Keira gets home to when she goes to bed?
When Keira gets home she kicks off her socks and sneakers, checks herself in the mirror, walks around the house once then heads to the table for a snack and if she isn’t distracted almost every minute after that snack she will want to eat constantly. I don’t leave the kitchen much after Keira gets home from school, because someone must defended the food. And that pretty much continues after dinner until she goes to bed, regardless of how much she has eaten. Much of the time she doesn’t want to eat what she has. Keira will ask for a cookie and go to the table. I’ll give her a cookie and she’ll leave it there and go play, minutes later she’ll come back and want a cookie, I’ll show her that there is a cookie on the table and she’ll sit there, look at it, leave and go play only to come back and want tomatoes, which she may or may not eat.
3) What does Keira do at night when she does wake up?
Usually she wakes up screeching uncontrollably. She will go to the table, but won’t eat, then go to the couch and continue to screech inconsolably sometimes for up to 2 hours, then she stops and she’s happy jolly Keira.
However since I have started giving her the 2 Pepto’s before bed she now wakes up screeching, but only until I get up – which is usually pretty darn quick. Then she’s just cranky until I do her bidding, usually getting her something to eat, which she doesn’t want, then she will happily play in her room until she puts herself back to bed. However, NOT getting Keira something to eat will cause crankiness to go on for HOURS. It took us a life time to figure out that putting something in front of her would calm her down regardless if she eats it.
4)Have you kept a journal(diary) of her sleep patterns? Yes, we have. Usually after I start charting, Keira will start sleeping through the night. And as soon as I have it all figured out she starts waking up again but it is always different than before. There has been such a range of non-sleeping symptoms I could write a book. For the record, obviously I have never truly figured it out.
a) what time does Keira wake up? This round started a month ago, she started waking at 2 and now we’re up to waking at 11pm
b) what time did she go to bed? This round she’s been going to bed at 8 and you can’t keep her up any later – she will fall asleep standing up.
c) what time did she settle into bed? We wait for her, because trying to put her to bed when we want her to go was something we tried for 2 ½ years and we admit defeat. Plus, we don’t want her to go to bed any earlier than 8.
d) what helps her settle into bed? The ONLY thing that helps Keira settle down is waiting for Keira to settle down and intervention on our part will cause all hell to break loose. TV boredom, will help if she is tired and fighting it, but basically we have to wait for her to make the first move.
e) time/length that Keira is waking at night… Last night it was 11pm until some time after 4am – 4 being the last time I heard her in her room, because I fell asleep.
f) what happens when Keira wakes up at night? The last week has been better, she’s gotten happier much faster. She’s full of energy, jumps on her trampoline, climbs up and down different ways on the bunk bed time and time again, climbs up on top of and over her easel, sings songs, spells words, eats several books and now she has tea parties with her dolls.
5)Have you guys seen changes since the change in Keira’s diet? She’s waking up earlier than she did before, but I don’t think that has anything to do with the diet, that’s par for the course, it‘s only been 11 days and the change in waking time is normal. Sometimes it starts out where she wakes up at 2 am and it moves up to around midnight and some times its the other way around. And then it just STOPS for weeks at a time, we think we’re in the clear and we’ve finally figure out whatever it was and boom it starts all over again. The only constants I have found are these 1) When we open the windows in the spring she stops waking in the middle of the night for a month or so, but that could just be coincidence, she’s only 4. 2) the MORE exercise and activity Keira gets the LESS likely she is to sleep through the night and the earlier she‘ll wake up in the night. Meaning if we have a great family trip to the beach, we are all dead tired, but Keira will not only be up at midnight most likely she won’t go to bed until 10. 3) TV boredom will cause Keira to put herself to bed if she‘s tired. If whatever we have on is something she doesn’t like, she’ll go to bed to avoid it and since Keira doesn’t like TV, it works well if she’s in one of her stay up late, get up early cycles (Bed at 10pm up at 3am cycles – that’s my favorite cycle – 5 continuous hours!).
You wouldn’t happen to have a list of questions for Mouthing would you? As much as I’d love Keira to sleep through the night we are desperate to stop the mouthing. I would even consider medication if it came with a promise that she would stop eating books, wood, rocks, plastic, and anything else she can find. I can sleep when I’m dead, the mouthing is causing much much much more stress then the sleeping issue.

Keira is having a tea party with her dolls on the bunk bed. She told her dad she was having “Cake” then pretended to eat it – Gluten Free Day 10

Keira is now talking to her dollies – she still won’t talk a whole lot to us – she probably finds the dolls more intelligent. lol

Keira playing dolls

Children’s Pepto is Gluten and Dairy Free!!

This afternoon, Keira pulled the tomatoes out of the fridge and brought them to the table. I didn’t hear the first part of what she said, but the second half was “….. food that I like.” Pretty sure she was talking about the tomatoes (since she does like them) But WOW it sounded like a full sentence that wasn’t taken from something else, I think it was a sentence she formed on her own!

Keira has been on a Gluten/Dairy Free diet for 1 week.
(and no one’s died!)

Treasure and the cow

Today, each time Keira needed her bum wiped she’d come to wherever I was and say all the words she knows about the potty. lol Cooking, cleaning, making beds, didn’t matter she’d walk up and say “Poop, pee, potty, toilet, diaper, sit on a potty, wash a hands, wipe a butt, big girl.” Thankfully she was standing there without shorts and undies so I took the hint – lets hope that keeps up.

Passed Keira a brownie, she looked me in the eyes and said “I like this brown”
A few minutes later Daddy came home, walked in and said “Keira”‘ Keira turned around and said “Hi’ almost as if she didn’t mean to (as if, Darn, now they’ll know I know how to do it!) Then put her arms up to hug her dad and said “I love you”
All in about 5 minutes! Maybe this Gluten free stuff is working – course we’re only on day 6!

Keira is very much NOT digging this new diet – poor thing.
I hope the Brownies taste good.

1 800 222 1222 WithOut looking up the number – where am I calling?
See comments

Tonight Keira got a plastic top from one of her toys and 4 random little people in to top and sang the Little Einstein song. Then the little people and Rocket took off lol