They're back

I have been in denial for a few months. But my migraines are back. I started getting migraines as a teenager. They are horrible. Two years ago, they were getting bad. I finally went and saw a Neurologist who is a headache specialist two years ago exactly. He put me on 7,000 mg of Vitamin D a day and 500 mg of Magnesium a day. My headaches disappeared for nearly two years. Unheard of in my life. I had been at a point where I was having a tension headache at least 50% of the time which would result in a full fledged migraine every 4-8 weeks. It was bad. It got good. Really good.

I was totally sold on the Vitamin D kick. Still am. Started my kids awhile ago on 1,000 mg of it a day and they have hardly had the sniffles in over a year. No stomach bugs. Please don't let me be jinxing myself by writing this. :)

So, the last 3 or 4 months, the headaches have been creaping back. And I have been in denial. Mainly just the tension headaches, the type I can still function with, they do slow down my productivity and all, but don't knock me out of commission like a migraine does. In December, I finally started charting them. Of the last 36 days, I have had a headache 23 days. Last Wednesday, the migraine hit. A bad one. In the olden days, after a migraine, the headache would be gone. It was not gone last Thursday. I decided it was time to go back to the Neurologist.

I called in the morning expecting it to take a few months to get in, but they had a cancellation for 11:00 the same day. I grabbed it. We have a new plan. Here it is:

• MRI of the brain. I struggled with this one. I had one in 2007. Did have Lipoma which is a fatty tumor that supposedly doesn't cause the problems I'm having and they do nothing about. Have to pay for the MRI which is well over $1,000 since haven't met the deductible, January being my least favorite financial month of the year (especially with a $3,200 plumbing bill). But we scheduled it. He thought it a good idea since such a big change all of a sudden. I'm sure it is nothing
  
• Starting a preventitive medidicine called Top*omax. Has a weight loss side effect I'm hoping hits me hard!!!
• I was not taking enough Magnesium or the right kind, so he upped it to 1,000 mg and it has to be chelated and end with an "ate" (glycinate or lysinate)
• Got some shots that I can use on myself when I do have a headache. Will tell you more about those now.

Two years ago, I got a nasal spray called Migran*al. It cost $400. It lasted me two years since I had so few headaches and the few times I did feel one coming on, I used this spray and it worked. Well, this spray is now up to $700 and the same medication is available as an injection. I have no problem with giving myself shots so I chose this. Only $300. Had the training last Friday, they faxed the Rx to my CVS.

CVS called to say they had to order it and it would take until Monday. OK I said, on day 6 of a headache. I waited til Monday. Went in on Monday. They forgot to order the filter needles that are necessary. This is on day 9 of a headache. I waited until Tuesday, day 10. Called in the morning. Shipment hadn't come in yet. Went in later. No shipment. Called later. Nobody had placed the order. I freaked. They called a hospital inpatient pharmacy. I had to drive to Methodist Hospital to get it. This is where my Dr. is located. Should have just had them fill the
Rx.

Got home, got ready to give myself the shot. There were no needles, just the filter needle, which is not what you use for the actual injection. Ugh. Thankfully, CVS did have some of those instock. After I finally was able to give myself the shot, it actually worked. My headache went away. It was a miracle!!

Update. I started this post over two weeks ago. As I was writing it, I got a headache. Which turned into a migraine. Which turned into a puke fest. Too much info. I know. Long story short. Headaches have been torturing me lately. 1/2 of each week seems to be full of headaches. One migraine a week. Headaches at least half of the week, I can get stuff done, but am kind of a zombie. Haven't been reading and catching up on blogs lately. Hoping to return to normal soon. More later.

Imani and the sewing maching

Imani really wanted a sewing machine for Christmas. I said no. Our neighbor/Grandma, Kathy, has sewed with the kids and they all love it. I don't love to sew. I actually, really, kind of, can't stand to sew. I don't mean anything mean to all of you who love to sew. I think it is an art. And I am not artsy. And I have no patience or tolerance for art. That, is, for creating it myself. I do appreciate art. I just don't like to create it.

So, Imani wants a sewing machine and I said no. Couple of reasons. One, and the big one, is Akila. She will undoubtedly have a hard time with a sewing machine. She will be jealous. She will try to sabotage it. And Akila, definitely could not handle it without constant help. Which, as I mentioned, is something I hate. Her fine motor skills lack also. Not fun.

Anyway, I had told Imani that once she became more skilled with a machine, I would be more open to the idea. But for me, to every 5 minutes, be going to help her thread it, our unjam it, or whatever you call all that stuff, would drive me nuts. I know. Bad mom. But that is who I am. The kids have a zillion times, done some hand sewing projects. I have to help them get it started, make the knot, etc. Can't stand it. Bad mom.

Kathy and I talked about Imani using her old machine (she has a fancy newer model, and a really nice older model- not like the really old one that I have from my mother-in-law), and she is going to sometime help Imani get more familiar with it so she can be more independent with it. But here is what happened today.

Imani came home with a letter to Santa that she was graded on . She got 19.5 out of 20 points. It is a good letter. Here it is:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dear Mr. Claus:

I hope Rudolph is still shining his bright nose. I'm sending this request to get a sewing machine. I think I deserve this because I am nice to my family even though they can be annoying.

I was going to use my neighbor's other sewing machine, but she said no (not because she doesn't trust me). I would share with my siblings and family and my friends. I also will keep it in good hsape and only ask for help when my mom isn't busy.

Say hi to Mrs. Claus for me!

Sincerely,

Imani

Enclosure: Information on sewing machine

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

She then included a sheet printed from the interned with info on a sewing machine, with the price and all. Wow, I am a bad mom!!! She would only bother me when I'm not busy? Wow. Kathy was willing to let Imani bring the sewing machine over to our house, and I did say no. I just know Akila would freak out, and Imani still has not been responsible enough to keep her room locked.

It is hard to see how Akila's FASD effects the entire family. From the fact that I am worried about how she will handle the sewing machine and what she will do with it, to the fact that I have spent all my patience on her issues, and don't have any left for a sewing machine. Her birthday is in June. She may be ready by then. So may I.

Not changing things

I spoke last week to a group of medical residents at Children's Hospital on working with a child with mental health issues. One other parent and myself were sharing our experiences and giving advise. It was the first time I had worked with this mom and it was fun.

During my intro of my family, I kind of ended by saying I wouldn't change a thing. When she was finishing her intro, she said she would change things and wished she could make her son's disabilities go away. I had to jump in and say that I for sure would take away Akila's disabilities, just not Akila.

I then quickly interjected that as an adoptive parent, I often get the questions like, "Did you know she had these issues when you adopted her", and/or "Would you have adopted her if you had known?", and/or "Would you do it again?". The honest truth, is that God designed my family. He purposefully placed Akila in our family, along with each one of us. We all compliment each others weaknesses and strengths.

Akila is my daughter. I love her. I could not imagine my life without her. But in a heartbeat I would wash away all of her issues including FASD, Turner Syndrome, Cyclical Vomiting, and the list goes on. It is maddening to deal with her often. It is also heartbreaking often. Last week, I watched her standing along a wall at school while a group of her peers were goofing off (appropriately), and playing with each other. I could see the longing on her face to play with them. They did not invite her in.

I was not sure how she would behave when she returned from this peer watching. She watched them for quite some time. Today, she told me she wants to go to a new school because the kids are mean at her school. I told her there are mean kids at every school. She disagreed. I didn't point out, that she is one of the meanest often. Wouldn't have helped. Wouldn't have been appropriate either. She was having a vulnerable/sad moment. I just listened. To her. And my heart breaking. Again.

faxing

I found a great internet site with free faxing. This has been really helpful with faxing the PCA's timesheets. You can find the site here, and I think you can do two faxes a day, up to 14 pages. I have been scanning the timesheets, and attaching them as a PDF. You can also send word, excel files and other stuff like that. Very slick. Just wanted to share.

Personal Hair Stylist

Imani's hair appt. for Friday at 3:30, (all 4 kids were suppose to get hair done at same time after school for photo shoot scheduled for Saturday at Children's Hospital), was canceled. I was so relieved it wasn't Akila's- she would not have taken that well. The lady rescheduled it for Saturday morning at 7:30. Ugh. I am not a morning person.

Brought the kids to the salon on Friday after school, and it went really well. Akila's hair looks adorable. Ness, one of the PCA's, came to the salon, and stayed to take Akila when she finished as I drove other kids to basketball and other things. Here are a few pics of Akila.


She came home telling me she has her own personal hair stylist, and was very happy with the end product. Thanks be to God. It did look great. The photo shoot went well. One funny thing. The photographers wanted one or both of my boys to take off their shirts. We talk a lot and often in our family about modesty. It does not register with Akila. She does not get it at all and does not care. Our other 3 are almost to the other extreme, and I think this is because they watch Akila being on the opposite extreme. Well, the boys wouldn't take their shirts off. Sounds funny, I know.

The photographers just wanted them to do the criss cross pulling off of the shirt with a smile, and the picture would be taken only seeing their smile, the top of their head would have been covered by the shirt still. They refused. We tried to talk them into it a little bit, but respected their wishes of course. It was kind of funny when you think about it.

They did several pictures with bandaids on, holding X-rays, splints on their arms, wearing hospital gowns, and others. Not sure which kids or pictures will make it, but it is for a billboard campaign. So, keep your eyes peeled when driving around the Twin Cities.

Hezekiah and Imani are featured on the mission posters that hang throughout Children's Hospital. One in in the cafeteria. My friend, Julie, emailed me last week asking if there was a picture of Akila hanging in the cafeteria. I said, no, it is Imani and Hezekiah. On Thursday, I was at a meeting and walking by the cafeteria and saw a big pic of Akila coloring hanging in the cafeteria. I emailed Julie to tell her she was right. Oops. There is also a picture that has a profile picture of Zeke at a table doing an art project (in a yellow shirt- Julie!). So they are all 4 covered. Phew!!! Kind of fun.

After I took the pictures of Akila's hair, she wanted to do a short video. Here it is. Such a drama queen.

Oh no

As some of you know, Akila has Turner Syndrome on top of her FASD. The two are totally unrelated, but I have always said they are a nice match. Girls with Turner's are missing their second X chromosome and have issues with puberty, infertility and many other areas.

I have been in a panic the last 1 1/2 hours, searching the internet for more info on Turner. I just found this statement, "Menstruation can occur but this is not an indication of fertility". I am so relieved. Too much info? Sorry. But I'm freaking out. Most girls with Turner's do not get their periods. But Akila never goes with the flow. Get it?

My other fav, hair. NOT!

As you know if you have read my blog for very long, I hate dealing with Akila's hair. It is challenging for most white women to figure out how to care for and maintain black hair as it is so different. Throw FASD into the mix, and it is not a pretty picture.

Akila has always had issues with hair breakage. When she was a baby, she had a round mohawk on the top of her head. Many babies lose their hair from laying on their back, but hers was different. And it lasted for years. I'll have to dig up some pics and scan them someday. Anyway, with her obsession with her hair, and her behavioral issues, it is just exhausting.

Well, I got another call from Children's Hospital for a photo shoot. For billboards I think. This is a lot of fun, a good opportunity, and a nice way to get some professional pictures for free. But it is also adds an added level of work, since we have the hair issues.

Imani is due for getting her locks tightened, and the boys both need a haircut. I was planning on having Akila's hair braided or something this weekend. But I would really like to start using a stylist and a salon. Akila has been begging to go to a hair salon for over a year. A new one opened by our house this summer and it looked really nice. Some hair salons in North Mpls, are not the most modern. This new one was big, and modern and inviting looking.

I drove over there today to talk to them about Akila. I loved the place. It is a little intimidating for a white woman to walk into a black hair salon, but it was easy. They were very nice. We decided that I would bring Akila back today after school so they could see her hair.

Being the foolish mom that I am, I thought she would be thrilled. And, actually, she was. Until we got there. The lady was talking about doing some braids into a drawstring pony. Akila was talking about weave. The stylist and I both explained (me for the millionth time), that weave is too mature of a look for her, and she won't be getting that. Well, this ticked her off. Enter attitude.

Her hair is also damaged enough, that we have to be careful with it. She didn't want anything to do with it. She sat on a chair and kicked me quietly and smoothly. She sat their angry with an attitude. She was not raging. She was not overtly rude. But she did not look happy. I set up an appt for Imani to get her locks tightened, and the boys to get hair cuts. They are all 4 going to be there at the same time actually. Nice.

We left. She was even more mad. Got home. Mad. And, the best part is, that the lovely bus driver set her up for this bad mood.

I have been working with the school for one year now, on trying to get an assigned seat for Akila on the bus. Who knew it would be so hard. The driver last year said she didn't need it. Wouldn't do it. The school told the bus company they would not support any behavior reports for the entire bus if they would not abide by this request.

New bus driver this year. Has been asked at least 4 times to give Akila an assigned seat. Never happens. Today, Akila's aide got on the bus and told her Akila needed an assigned seat. Bus pulled off, driver let Akila get out of her seat. When kids were getting off of the bus, the bus driver told Akila that that lady (meaning her aide), isn't the boss of her and can't tell her where to sit. I'm steaming.

Why is it that difficult to enforce an assigned seat? To my knowledge, she hasn't even really tried. She just keeps saying that Akila doesn't need one. She is not the biggest problem on the bus. Ever heard of prevention lady? Ticking time bomb?

I would also like to thank her. Akila came in the door furious. The hair salon was a temporary band-aid to her anger. She is still in a funk. She is mad at the aide, whom she loves dearly. But this bus driver saying that aide shouldn't tell her where to sit, has Akila mad. Me too actually.

One of our favorites

I just made this, had a taste, and thought I should share. It is one of my families favorites. All four of my kids love it. That is rare!!

Pepperoni Cheese Ravioli

1 package (25 oz) frozen cheese ravioli (I get the small ones)

½ pound fresh mushrooms, sliced

1 package (3.5 oz) sliced pepperoni, cut up or diced (or buy the tiny ones if you can find them)

1 can (16 oz) tomato sauce

1/4 cup grated parmesan cheese

½ teaspoon garlic powder

½ teaspoon dried basil

½ teaspoon dried oregano

1/8 teaspoon cayenne pepper (optional, just adds a tiny kick, maybe try 1/16 first time)

½ cup sour cream

Cook ravioli accd to package. Meanwhile, in large saucepan, sauté mushrooms, pepperoni in butter. Stir in tomato sauce, parm cheese, garlic powder, basil, oregano and cayenne; heath through. Remove from heat, stir in sour cream. Drain ravioli, toss with cream sauce.

I always double this recipe and barely have any leftover. When I double it though, I just add 8 oz of tomato sauce, 32 oz seems like too much.

Spilt milk

Sundays have been our rough day the last few months. I think this is partly because we have PCA help usually for part of Saturday and it just is our long full day. But it is more than that.

She wakes up nasty on Sundays. Maybe it is the end of the week. Maybe it is spiritual warfare. It is hard to get to church when she is in an incredibly bad mood. Bringing a 11 year old to church who is cursing up a storm, is an intimidating idea. Although she usually is settled down by the time we get there. And she seems to do well in church.

Last Sunday, we went out to eat after church with Michael's brother, Dan his wife Tara and 3 of their kids. Akila was on edge. It was obvious. We got home, and it was issue after issue. She was digging. Trying to antagonize the other kids, trying to make them mad. Then she would laugh. Michael and I each took turns playing one on one with her. I had her alone all day Saturday, Michael had to work. Well, not alone, I had all four kids. But by Sunday evening, I was ready to blow.

This is also after no PCA help since Tuesday. Have I mentioned how much I love my PCA's? And that I have a new policy that they can't leave town, be sick, attend funerals, or study for finals? Ha. Just kidding. Kind of. Well, I will allow funerals.

So, 5 days with no PCA help which has been an amazing support to our entire family, and especially to me. A long Sunday with tons of junk, and we were ripe for a good explosion. Who do you think I mean was ready to explode? Yes, it was me.

I was finally trying to get Akila separated from her siblings, it was after dinner, I was counting down to bedtime. She was still hungry, and I brought her a bowl of cereal in my bedroom. I repeated the same thing I say every time. Do not eat on my bed. You can eat it on the floor. Not ideal, I would prefer her not to eat our bedroom. But it is the place where I can keep her separated when needed.

A few minutes later, she is bringing my bedspread down to me and telling me that Hezekiah spilled on it. He was not in my room. Then she said just kidding. There was no spill on it. I looked, and there was. I was asking what it was. It looked like water (cream bedspread), and she would not tell me what it was. It was milk of course, she had the cereal on my bed. 1...2...3... No, I didn't even make it to 2 before I exploded.

I lost it. Yelling. More yelling. Brilliant things like "you know you are not suppose to eat on the bed", "why did you lie to me" and other things. I totally lost it. So she did also. We both escalated. She got all cursey and hitty. It took forever to de-escalate both of us. It was not a fun way to end a week. And it was all over spilt milk. That is what I kept telling myself.

I know it was more than the spilt milk. It was several days of junk building up. But I hate it when I lose it like that. This week has been much better. Back on the regular schedule.

more

And to make up for my lack of blogging, here is a third one. We had a PCA on Monday and Tuesday, which was great. But that is it for the week. :( Last two days have been crazy. Akila had asked Imani to play, she had politely declined. Then, Imani heard Akila going nuts on me because nobody would play with her. I don't know why nobody wants to play with her, can you think of any reasons?

Anyway, Imani heard the commotion, and bless her sweet heart, came to the kitchen, grabbed Akila's hand, and pulled her into the living room to play Barbie's with her. The boys joined in. Warms my heart. I had to take a few pics. Akila is on the far left with her back to the camera, Zeke is in the green jammies next to her, Imani is in the dreads, and Hezekiah is in the royal blue tshirt. You can see, that in the second picture, Hezekiah has disappeared and Zeke is trying to run out of the picture. I wouldn't want to ruin their reputation and show these two boys playing with Barbie's after all. Please don't say anything to them about this, for real. I can't tell you what a blessing it is when they sit to play Barbie's with Akila. She is calm and happy. They took turns over break doing it. My kids are the best!!!!

The roof

So, after we had been working forever already on the roof (and even had our two middle kids on helping us), Hezekiah got the camera and took a few pics of mom and dad on the roof. Here they are. You can't really get an idea of how high it is, but it isn't too bad. This is after two hours up there. Originally, where we are standing, the snow was up to our waste. We raked it off the level that is behind us, and then were shoveling it off. There was so much snow, that we were very safe. You couldn't even fall off, as if we were to fall, we would have fallen in a pile of snow.

Back again

I have been lazy lately. Or something like that. I'm just going to do some bullet point updates/thoughts.

• I don't like it when my PCA's are on vacation. :) Winter break means some of them go home, some of them go to Spain and other things like that. I miss them. A lot. I want things to get back to the new normal that we were starting to get use to. They are awesome.
• Zeke is watching Arthur right now and asked why 4th graders can walk to the ice cream store and places like that. I said that was in a different day and age and that you can't do that in a city really.
• Michael and I spent 2 1/2 hours on the roof of our addition on Christmas Eve day shoveling. I am just about recovered. Water was trickling down the walls. Good times.
• I have two moms here in the Twin Cities. One, is my best friend Juli's mom. I have called her mom forever (and her dad, dad). She was hospitalized this week with kidney stones. I went to visit twice. I didn't like it. My other mom (I have claimed as my own), is Kathy, my next door neighbor. She has been diagnosed with breast cancer. Again. It looks like it is not the invasive kind like it was 9 years ago, but they don't know for sure until they get in there. I went with her and her real daughter to a couple of appt's this week. I hate to see her have to go through this. She is precious to me and my family.
• The water main or pipes or whatever you call them out by the curb that lead into our house, has sprung a leak and needs to be replaced. By an underground plumber. Sounds like minimum of $3,000. Waiting to see the bids next week. Happy new year.
• Michael and I got the Wii fit and the Biggest Loser game for Christmas (we just bought it last week). It is really hard, and a great workout. He lost 5 lbs the first week and I lost 4 lbs. Gotta keep it up. I really like it. It is very similar to the classes I take at Lifetime Fitness that I love, but I don't have to drive there, and I can yell at the instructor when I want to.
• Akila's MA through TEFRA is still not all figured out. I just had to mail in all the insurance Explanation of Benefits from 2010 for them to decide if our insurance is cost effective. She is on the MA, they just haven't decided if they are going to reimburse us for her portion of the monthly premium. And I just had to fill out renewal forms. I want to scream, "ARE YOU KIDDING ME!!!! We haven't even gotten it all figured out, and I have to do more paperwork to renew???" Right. Makes sense.
• Winter break was long. I think I have recovered. Today, I feel like I came out of the fog. Finally got something done. Been fighting a headache, for nearly two weeks (with about two days off). But it is gone today. And it will NOT come back.
• We had our annual once a year sleep over. Last Thursday, we had 4 kids sleep over at our house. It went fairly well. Just can't do it often. Once a year is plenty.
  
• By the way. Akila wants a family. If any of you know of a wealthy and rich family, she is looking. I have heard that each day this week. She is obsessed more than ever with material things and thinking we should go to the store every day to buy her whatever her whim of the day is. Barbie children, high heels, and Ken clothing, are her three main obsessions. I have explained, every day, that mom and dad do not have enough money to buy her all that stuff, and we will keep it on a list for her birthday or something like that. Or she can save money to buy it. Doesn't matter. She hates us, and wants a new rich family. Keep your eyes and ears open everyone.

I think that is it for now. I have thought of a million things over the last few weeks that I should blog. Should have taken notes. Happy new year everyone.