Tuesday, January 27, 2009
I should be thankful, that is pretty good for a 9 year old, and especially one who has Cyclical Vomiting Syndrome (CVS) and vomits every couple of months. The majority of our house is hardwood floors, except for our bedroom and the hallway. She lost it in the hallway. It was not a pretty sight, or smell. I got her tucked back into bed and spent over an hour trying to clean it up. It was disgusting.
So the princess is at home today, and I am waiting on her hand and foot. I am very relieved to say that this is not one of her CVS (not the store) bouts, as she has been able to keep food down today. She has a slight headache and her tummy is hurting a bit, but she is not heading for dehydration like she normally does. Thank God!!! An ER bill is not what we need now. Did I mention that we had to pay $2,100 for her meds this month? We have yucky high deductible insurance and until we meet the $3,000 deductible, we pay 100%. I am proud to say that we have met the deductible already, by January 18. Isn't that ridiculous? Don't get me started!!!!!
She is quite concerned that she won't be better by Saturday when she will perform 4 dances in the Winter Show for Dance Endeavors. I told her that I am sure she will be fine by then. I just hope this doesn't hit any of the rest of us!!
Friday, January 23, 2009
But they have been coming more often and staying longer. So I finally went to a headache Dr., also known as a Neurologist. They first made me go to "Headache School". It wasn't very helpful. But I had my appt. with the Dr. last week. It went really well. Here is what I learned, some of what I knew and some of what I didn't:
- I (or all of us), shouldn't be taking Advil or Tylenol or a similar OTC drug, more than 4 times a month. Otherwise we get rebound headaches, even if we're taking them for achy muscles or things like that.
- Caffeine intake should be under 100 mg per day.
- Diet sodas and other things that contain Aspertaine are a no no.
- Vitamin D deficiency is a huge issue for many health issues. My sister-in-law had started on Vit D last year and it has helped her immensely and she had shared this with me. I had started taking it, but was not very regular and was only taking 1,000 mg/day. The Dr. said I should probably be at 7,000-8,000 mg/day but should start with 5,000 mg. The only natural way to get Vit D is from sunlight which we get very little of in the winter. It is not in food.
- I should also be taking 500 mg/day of Magnesium. I don't remember why. Ha.
- Aleve is what he said to take for headaches, and to take 3-4 of them, not the 1 that the bottle says.
- I have tried two migraine drugs and not had success. He prescribed one that is a nasal spray.
- I should also be exercising 3-4 days a week. I of course knew this one. :)
The day I was there, I was on the 4th straight day of a minor nagging headache in the back of my skull. After I left, I took 3 Aleves and it was gone in an hour. First time I can ever remember a headache just leaving like that. Then, the next morning, I woke early with a big headache, the one I can tell has potential to turn into a full fledged migraine. I got up, used the nasal spray. I have to use it 15 minutes later, and 2 hours later. I also took 3 Aleve, as he had instructed me to do. By 11:00 am, the headache was totally gone. I was amazed.
And since last Friday, I have felt great, full of energy, and the chronic lower back pain that I almost always have, is barely noticeable. I am not sure yet if it is because of all the vitamins, and I have actually not had a diet coke in over a week, or if I am just having a good week. I hope it is all the changes, and that this is going to be the new normal. I'm ready for a new normal.
The good news, the kind that you hate to say or write as to not jinx yourself. Akila has been having the best school year of her last 3 years. She is in 4th grade and has been doing really well. Typically, each year in November, she starts to go down hill. This has not happened and I am so happy and relieved.
On the home front, we still struggle greatly as her meds have worn off and late afternoons and evenings are rough. But, they seem to not be quite as bad as a year ago. I think we have made enough changes in the way we do things, and the way we react to things, that it doesn't seem quite as bad. I am no longer stuck to the notion of having Akila sit through a meal with the entire family. We are more successful if some nights, we let her eat in a different room or at a different time.
She has more recently started to be mean at her dance class. There was a complaint this week from a mother who's daughter had never given the letter I had written to her mom. It was still in her dance bag. After she found out about Akila, she was very understanding. Most Wednesdays when we have dance, I have been hiring our neighbor boy to watch the other 3 kids while I drive Akila to dance and drop her off (it is between a 20-25 minute drive). This has greatly improved her behavior in the van. When the other kids are there, she is horrific and mean to them and rages over every little thing. Like if someone looks at her. Or if someone tries to sing along to Hannah Montana. Or if someone doesn't see something she is trying to point out that we are passing by.
This Wednesday, I volunteered at school all day and helped with hearing and vision screening. We all went straight from school to dance. The other 3 kids and I then went to the health club and I exercised. We then picked Akila up and drove home. The drive consisted of constant rages, she hit two of the kids, and I finally had to pull off of the highway. It was horrible. Then when we got home, at bedtime, she was too wound up to sleep.
Imani has Magnetix toys that she likes to play in bed with a little as she is falling asleep. Akila can faintly hear the clicking noise of the magnets coming together and loses it every time Imani trys to play with her Magnetix. Being a mom who half the time just wants to avoid confrontation and rages, I usually have Imani put he Magnetix away. It just so happened that this evening, Imani was messing a bit with her Magnetix. Michael went up to deal with the situation and Imani asked him why she had to put them away.
Michael said because Akila would rage. Imani said "let her rage". Michael agreed. An hour later, Akila was still raging. I have no problem with standing up for a principle with Akila sometimes, but it just did not seem like the best night to do it, when she had been worked up all night already. It was a long night.
The van ride had wore me out. Akila is very into trying to scream hurtful and horrible things. Like "I wish you were never alive", "You're ugly", "Daddy's better", and some that I can't print. I really don't have issues with this hurting my feelings as I know she doesn't mean it. What is hard, is for the other kids to have to hear it. I speak to them about it quite often. But it sucks that they have to deal with this stuff. It is bad enough that Akila has to.
Monday, January 5, 2009
This is not how I pictured spending my first day of freedom in over two weeks. But it is quiet, and I am thankful for that. I drive past one of the Honda garages to the one in Hopkins which has an awesome waiting area with plenty of comfie seats, tables, TV's and free coffee and cookies. At least I am comfie as I wait. And wait. And pay.
I now have some time to blog some of my thoughts from the last several weeks. They will probably finish as I am typing, that would be OK!!
One morning last week, Akila though she had a tooth that was loose. She wanted me to pull it. It was barely wiggley, as a matter of fact, I didn't even notice that it wiggled. I told her that I wasn't going to work on it as it wasn't loose enough. She went up into her bedroom and worked on it for over an hour, it was very quiet and peaceful.
When Hezekiah has a loose tooth, he will wait until it is hanging on by a thread before he will let me touch it or try to pull it himself. And if he does let me wiggle it, with practically making me swear on the Bible that I won't pull it out, he cries and cries over the pain. Not Akila. It is like she thrives on the pain.
I have read that some FASD kids have a high pain threshold, and this is definitely true of Akila. In the evening, when she gets her nightly shot, sometimes she has an initial moment of fear before the needle goes in, but when it is in and the tiny bit of pain is there, it is almost like she gets a buzz off of the feeling. Strange. Well, she has no fear or issue with the pain of pulling a tooth. She worked really hard on this tooth and got it out. Most kids would have waited several more weeks until it was a little more lose, but not Akila.
I think she gets obsessed with it for two reasons. First, the thrill and the pain of it seem to give her a high. Secondly, the reward the next day after the tooth fairy comes. Money. I am about to tell her that I am going to tell the tooth fairy to leave a book or trinket instead of money since the money that she receives seems to cause her to be obsessed with spending it. The fairy brought her 75 cents, and she is itching to spend it. We have told her she has to save it. She does not like this, and it is all I'm hearing about.
It is honestly all the money she has. She broke her piggy bank months ago and I am not buying another one. She has spent all the money she has and I am working hard to make sure that no spare coins are laying around the house or within her reaches. The boys each received a coin trick kit in their Christmas stockings, and she has tried to snatch their quarters for their magic tricks.
I am very glad it is Monday and we are back in the routine of school. I must admit that the two weeks went pretty well, with no huge issues, just a million little ones. If I could Akila to chill out on other kids chewing with their mouths open, it would be nice. She has turned into Ms. Manners, and can't stand it when Zekey chews with his mouth open. She will literally go into a tail spin over this, and slap him if he doesn't stop.
One saving grace over the break, was playing cards with Akila and the other kids, but especially Akila. She has been really into playing war, where each player puts two cards down and you have to use your math skills to add them up to see who wins each hand. They have played this in her special ed math time and she loves it. Her and Michael made up a new game called "Beat the Deck", that she really loves as well.
A year ago, I hated to play cards or any game with her. It almost always ended in a rage. She loves to cheat and would often, almost every hand. Now, she doesn't try to cheat too often and she has the patience to play for a really long time. It is a nice calming activity for her as a matter of fact, and it has worked well to distract her. It is a good reminder to me to keep trying to reintroduce things at different times to see if they now may work. She sure keeps us jumping, that is for sure!!
Yesterday, I was doing a lot of cleaning and sorting and the kids were helping a little. We ended up with a bag of stuff to give to our neighbor, Carter who is 3, so sometime around 3:30, I sent Akila down the block to drop the stuff off. Margie, Carter's mom (who I happened to graduate from high school with in Willmar and we ended up living one block apart and never knew it), called and said Akila could stay and play awhile. She then called and asked if Akila could eat supper with them. I of course said yes. It was really nice as sometimes Sundays can be hard for Akila, I'm not sure why they are harder than Saturdays, maybe because we are usually taking it more easy and not running around town or doing errands. Anyway, I really appreciated this break for Akila and us, and Akila had a blast.
Friday, January 2, 2009
My brother-in-law and sister-in-law, Dan and Tara, gave Michael and I a very practical and needed Christmas gift- the safe that you see above. It is great!!! We have desperately needed something to lock things up for quite some time, but have nothing in the house. We live in an old house, and there are not locks on doors, closets or anything.
Akila is into everything, and I am not even comfortable with the car keys not being locked up. A month ago or so, she had the flicker thingie, the candle lighter, in her bedroom. That really freaked me out. I keep this thingie hidden, and like many of the things that I keep out of her reach and hidden, I have to move them around from time to time to keep her guessing. I more than once have not been able to find something as I can't remember the new hiding place.
Now, we keep wallets, keys, flicker thingies, the kids chore money and several other items in this safe. What is really great, is that you don't need a key, it uses a combo. I really like that. They got it at Gander Mountain and I think we will eventually get one for each kid, so they can keep their precious things locked up. It is their most precious things, that Akila goes for.
I would actually like to get a locksmith out to our house, and have him/her install locks on all the bedroom doors, closets and a few cabinets. I am assuming this would get quite expensive. I will look into it someday- probably after Akila crosses the line and steals and/or ruins something that really puts us over the edge.
We had a great Christmas, and today was the last week day of Christmas break and I am not going to lie, I am really looking forward to Monday. I think the kids really are as well. We went to the health club and went swimming and have had a good day, thank you Lord. We have had some rough ones. There has been more than one day that Akila has gotten up very early, or in the middle of the night, and not gone back to sleep. On these days, she is super hyper, and hard to be around.
My brother Tony and his wife Joan, sent gift cards to the kids for Christmas which they absolutely love. Akila of course had to spend hers immediately. Zeke spent a little of his but less than half. The kids then played a little with the Rock Band game for the Wii that their cousins got for Christmas, and have been begging for it all week. I mentioned on Tuesday that they could pool their money together and get it (not Rock Band 2, but the first version). I had a hard time finding one, but found the last one in town (I think) that was an open box one and at a really good discount, and picked it up.
So on New Years Eve, they played it all afternoon and night. It is like Guitar Hero, except there is a drum set and microphone as well, so three can play it. If we buy an extra guitar, a fourth can play bass. Some day. Hezekiah broke 3 drumsticks in less than 18 hours. They have been having a lot of fun with it.
My friend Juli, came over and spent New Years Eve with us which sounded kind of boring in theory. We are not very fun, and don't mess around with letting the kids stay up til midnight. Just isn't worth the hassles the next day and the kids don't really know better yet. So Juli's kids were with her ex-husband, so it was just her, Michael and I. I think Michael was thinking he would just go to bed or watch TV, as he wasn't very excited to hang out with two chicks. But we got him to come and play Rock Band with us and did it for hours and laughed hysterically. It was really fun.