Friday, October 29, 2010

Let the help begin!

I just got the call that our PCA's can finally start-praise the Lord!!!!! One is starting tomorrow! I cannot tell you how excited I am!~

A good deal

I love a good deal. I have told many of you how I have gotten into using coupons through the excellent advise in the website Pocket Your Dollars. I have also shared my thrift store purchases with you all. I have to share again.

Fridays is VIP day (25% off) at a local thrift store, and I of course am a VIP. :) I was on a hunt for winter jackets and other winter things. I got two really nice Columbia jackets, a Limited Too jacket, an Old Navy jacket, 4 pairs of snow pants, two pairs of boots, 4 pair of girls pants, a pair of mittens, one hat, a basketball, and two boys Gap sweaters all for $94 dollars. Here are a few pictures:

Wednesday, October 27, 2010

DD case management

I met today with the screening and eligibility social workers from Hennepin County. We qualified already, but they needed more info. It was a great meeting with two really good workers. I wish one of them would be our long term case worker, but it won't work out like that.

They are going to try to get us on the DD Waiver which I don't totally grasp yet, but I have been told that this is a great thing. They thought that Akila was severe enough that it shouldn't take too long. There are only so many waivers available for each county and a great demand. I always thought it was a wait list, but they do prioritize and evidently, they thought Akila should be at the top of the list. This is good, I guess!

We also qualify for 90 days of respite a year- wow. So, if we can feel comfortable enough with a family that we don't know, that would be a good resource. I'll have to see how that system works, I am a little leery.

We are also going to apply for a Family Support Grant to pay for a security system, which would help me to sleep more soundly. They thought this would be a no brainer. We will see.

The meeting went very well and I am feeling like I can see through the clouds. Tomorrow is the meeting with the PCA agency and our PCA's so we can get that started. It is amazing how much a little support can help.

Progress, kind of

At dance this week, dancers can wear costumes. Akila is a spider princess and wore her dress on Monday over her dance clothes. We were the first to arrive, and the next three dancers were not in costume. Akila took her costume off. This is progress, kind of.

It is a good sign that she is socially aware and felt awkward being the only one in costume. She is so clueless usually about these things. I was telling my dear sister-in-law, Tara, today, that if it were Imani in the same situation, I would have been bummed that she took the costume off. I am always trying to teach Imani to be her own person and not worry about what others think. I know, I am inconsistent.

I totally love going against the flow, I always have. I wore Chuck Taylor high tops to prom two years in a row. I have Imani comfortable with wearing socks that don't match. I love this kind of thing. But it is so different with Akila who is socially clueless. So, for her to feel awkward being the only one wearing a costume, was a good thing. A few months ago, she felt weird bringing her teddy bear into Sunday school. I was proud. This is progress, kind of.

Tuesday, October 19, 2010

Imani Gazette

Below is the newsletter Imani wrote yesterday, I won't be able to include the photos as they are on the other computer.

Today was a good day. This is a picture of my first day of school. Well we may look confident, but the only one confident there is my mom and sis akila.

Well let me tell you about her. She is nice (sometimes because she has a brain problem since she was born). I like her as a sister, but she can be annoying sometimes. If she's in a good mood, I mean who would play with her when she's mean, seriously, they would be generous and all but when she's mean? Come on they would be dumb (not including people who have a brain problem). Here's a picture of her. She took this silly picture, ok, it's dumb but hey it was the only picture I could find of her.

Well this i the end of the Imani Gazette. Bye bye.

Imani is the sweetest girl and such a good sister for Akila. She is forgiving and understanding. Sometimes she loses it with Akila but not as often as you would expect. She is mature enough to be able to look at a situation and know that Akila could not control her behavior and not get mad at her.

In this newsletter, she was trying to convey some points about Akila and that sometimes she likes to play with her, and sometimes not. On the rare occasion that Akila and Imani end up playing together one on one, Michael and I get very protective of their space and won't let the boys go near them to interrupt the play. It happens so infrequently that when it does, it is precious. We are always intentional about processing it with Imani afterwards and pointing out how enjoyable Akila can be when her brain is functioning well.

Part of the challenge is that Akila is a girly girl and Imani is not. Akila actually seems to play with dolls and Barbies now more than she did when she was little. Not many of her middle school peers are playing much with dolls. I have to talk her out of bring dolls with to evening school events to avoid some embarrassment for her. She finally does seem self conscious about bringing the teddy bear with to events at school.

Anyway, Imani is precious. I thank God every day for his discernment in choosing all 4 of our children. They are the perfect fit for each other and for Michael and I. They compliment each other so well and look out for each other. We are blessed.

Commercial shoot

This afternoon is the TV commercial shoot for Children's Hospital and Clinics. You might remember that last spring my kids got to go to a professional photo shoot for some mission posters for Children's. It was our first experience with such an event, and let's just say, that I wasn't prepared.

We didn't have the right kind of clothes, the clothes we had were too wrinkled and the marketing staff were having to iron my kids jeans. It seemed like we just walked in from a night on the streets. So, I'm trying to be a little better prepared this time.

I have been telling the kids all weekend that they all will more than likely not end up in the commercial. Trying to explain editing and how these things work, I think they kind of get it. I just found out yesterday that from the pictures from last spring, Imani and Hezekiah are the ones who made the cut and are on the mission posters. Hoping to see them today. They are both the most photogenic by far. Zeke is a doll, but he usually gets a fake corny smile and his pictures did not look very natural. And Akila doesn't like being told what to do, even by a photographer, so hers weren't too natural looking either. I'm expecting the same thing today. We'll see.

I am currently trying to wash and iron their clothes (I am going to have to dig for my iron, haven't used it in at least 8 years since we moved to this house). I was looking through all their drawers trying to find some decent jeans. I know that Imani has a pair that she got recently and I could not find them. Until I looked in her pillow case and found them and one of her bras. Poor girl. She is always having to hide things from Akila and then can never remember where she hid them.

That reminds me. Last night Imani made a newsletter called the Imani Gazette. She made one last year and it focused on our dog, Hibeam (who is now deceased). This one focuses on Akila. Actually, I'm going to make a new post and put her newsletter in it. I'll let you all know how the commercial shoot goes, wish us luck!

Monday, October 18, 2010

Better day

I was able to get better sleep last night and felt much better today. After a Dr. appt, Michael and I went out for breakfast and then stopped at Office Max. By the end of Office Max, I was feeling the pain. I hadn't taken a pain med yet as I was waiting until we got home from breakfast. We decided to stop at Costco quick to check out eye glasses and guess what I got to use?

You're right if you guessed that I used one of those motorized carts. It was a blast. I especially enjoyed going in reverse so it made the very loud beeping noise. Yes, I did get some funny looks as you usually see older people in these vehicles. But I am 42 people, don't forget. I had Micheal take a picture on my cell phone which I sent to a few friends, but I can't find a cord to get it uploaded on the computer so you're just going to have to try and picture a hottie like me tooling around Costco in one of those things.

Came home, got some medication, and had a great afternoon. It is amazing how much it really does help in recovery to not be in pain. This afternoon, my knee felt so much better and I was able to get it to bend further so I could walk on stairs better and do a few more things like that. It is important that I get it moving and bending more. I start physical therapy on Wednesday and I am not looking forward to that.

When I was a teenager and had my 3rd knee surgery in which they opened it up wide and put a staple in it, I had a cast on it for months and could not bend it when they took the cast off. I had to go to PT forever and it was horrific. I thought then and I still think, that the physical therapy was more painful than the actual surgery- and the surgery was painful!!!! I have vivid memories of laying on a table with curtains around me and this crazy woman bending my knee where it should not have been bent and me crying in agony. It was horrible.

I know it won't be that bad this time, but I still dread it. I also remember a horrible machine they had back then called the "Orthotron". I hated it. I hope they have put it in it's grave. That was back in the early 80's after all. My luck is that what I will be working with on Wednesday.

Akila had a very rough weekend, some really crazy behaviors and only hit my knee once and not too hard. Tonight she was great and I always appreciate great nights. Thank you Lord!

Sunday, October 17, 2010

Post surgery update

I don't like being 42 so far. I was in my teens in high school when I had my first three knee surgeries. I was 21 when I had my fourth, and I was 35 when I had my fifth. My fifth knee surgery was arthroscopic, which my first one was also. The recovery for my last one, was pretty easy. Off crutches by bedtime, and moving around pretty good within a few days. I was expecting that this time. I was wrong. I am feeling old.

Before surgery, I was given the choice between general anesthesia and a spinal one. The benefits to the spinal one are recovery is faster, you don't feel as groggy and the nausea is much less. You can choose if you want to be awake during the surgery, or not. I chose the spinal and chose to be asleep. I woke up before the surgery was over and it was cool. I got to watch it on the TV. In my altered state, i thought I watched it all. I was told in recovery that I just watched the very end.

When I did wake up during surgery, I felt very alert, not groggy or anything. When I was in recovery, I felt the same. The very strange thing, is that you can't move your legs. I was numb from the waste down. In recovery, I was eventually able to wiggle my toes and it started to wear off. I could tell when it was wearing off as my lower back started to ache. I remember this from all of my previous surgeries. I have pretty consistent lower back pain already, and then after being on the flat and hard operating table, it always hurts.

As I was laying there in recovery feeling pretty good, I all of a sudden started to shiver. But I wasn't cold. Before I knew it, my whole body was shivering uncontrollably. My bed and IV were shaking, it was weird. I got a nurses attention who brought some meds and put in my IV. They did not help at all. She put some more in, it did not help.

I laid there and shivered for 30 minutes. During this, my entire body was tensed up and the worst area of the shivers was in my butt cheeks. My back was aching worse and my knee was starting to throb from the shivering. A new nurse came on and was checking to see if I could have more meds yet and I could. She put them in the IV and then a few seconds later, said maybe it would help if she flushed the IV. About a minute later, I was feeling good and the shivering stopped.

I kind of think that I got the majority of all 3 of the meds when she flushed it, because I wad feeling very good at that point. But those 30 minutes were horrible!!! I think I would choose it over throwing up and feeling yucky from general anesthesia, but it was yucky. They said a lot of women get those shivers after having a baby also.

We were home before the kids got home from school, and Friday evening went OK. I was fighting a headache that I had for 2 days before surgery. It was gone after surgery but I think the pain meds were hiding it. It came back in the evening but wasn't too bad. Had a weird night of sleep as I never sleep very well on Percocet, I feel like I am sleeping but can hear everything around me.

Saturday was a different story. I felt nauseous and had a headache. In the afternoon, I started throwing up and did all afternoon and evening. I'm pretty sure that I was having a reaction to the percocet, I don't think I have tolerated it well in the past. I had taken one at noon, and decided to take no more. I was miserable! Just before 9:00, I was still puking, uncontrollably.

As I was laying on the floor in the bathroom taking care of business, my hands started tingling and so did my face. Within a few minutes, my hands were numb and locked and would not move. It was freaky! I sat in the bathroom for awhile waiting for it to go away (I had had a similar incident in the morning and it had not lasted very long). Well this was not going away, and my face was getting more tingly.

I eventually started to freak out and I couldn't even open our bathroom door. I yelled for Michael and had him call an ambulance. He had just put the kids to bed and Ms. Kathy, our grandma/neighbor was out of town so we couldn't call her to come help. The firemen came first, and when they got here, my left hand was starting to get some feeling back. One of them was saying that this is how they react to Percocet. They stayed until the EMT's arrived. EMT's ruled out a stroke, and said I had the classic signs of hyperventilating. I have never done this before or had anxiety issues.

I think that I was having such a hard time breathing as I was wrenching over the toilet, that I must have gone into hyperventilation mode. With that peace of mind, we refused the ambulance. They all left, and I did something I know I'm not suppose to do. Or did I? I think I took one of Akila's anti-nausea meds, Zofran. Or did I? Would I do such a thing? I know you're not suppose to. :)

My tummy finally settled down. I took a bunch of ibuprofen which did not touch my knee pain!!! I mean it did not touch it. I hardly slept at all, but I was done puking and was able to keep down some gatorade and saltines. Quite the drama. I hate calling 911, but it was quite freaky when my hands would not move.

We were thankful and amazed that the kids did not even know what was going on. They slept through the entire thing, and they had not been in bed very long when all the excitement started. Akila would have been manic if she were awake. Zeke was scared all day as he listened to me wrenching in the bathroom. He would not come near me.

Bottom line. Being 42 stinks. The pain is worse and I can tell that it is going to take a while longer to recover. I think a big difference though is that when I was 35 and had it scoped, they mainly just cleaned up some cartilage fragments and stuff like that. This time, I had a large tear in my meniscus and they had to cut it out and do a bit more when they were inside there. Maybe that is the reason for more pain. I also think the shivering episode, has made it harder. My entire right side, from the butt cheek to my ankle, hurts. The muscles all are aching badly and the knee is throbbing.

Enough whining. Today is going to be better. Thanks for your prayers.

Thursday, October 14, 2010


I received a phone call from Children's Hospital yesterday. Evidently, they were so impressed with my children at the award ceremony, and how sweet Dr. Mackey was with them, that they would like them in a TV commercial. They must have missed Akila eating the table, shaking the table, and going under the table. Excellent!

Tomorrow is my knee surgery, so I have been trying to get things organized. Today is my birthday, so I had to have a birthday lunch with my girlfriend Juli, but spent most of the day trying to arrange hair appointments for the girls. I needed to find a new hair braider for Akila- as we lost our old one due to some of Akila's very poor behavioral issues. Imani has an appt to get her dreads tightened on Saturday, and dad is going to have to take her. He won't be too happy about that.

The TV commercial shoot is on Tuesday. I'm not sure how I will be feeling all weekend, so there is much to do today. I did get some great birthday gifts from the kids. Hezekiah got me some gorgeous flowers. Asked daddy all on his own if they could go and do that and planned it early in the week. Zeke made me a bookmark and an awesome card (I love how 2nd graders spell bithday, grate mom- it is adorable!), Akila got me a few items from the dollar store last night when she was out with Angie, and Imani made me a bracelet and a really cool card. My friend Betsy watched my kids after school and drove Hezekiah to piano (I was at the kids conferences), and her family got me some flowers and cupcakes also- thanks Betsy and family!

And I got some great birthday news! Akila has qualified for DD (dev. delayed) Case Management Services- wahhhoooooooo!!! I don't even know what all that will mean, but I know it is good. They are coming to meet with me in a week and a half for some more eligibility stuff.

So I had a great birthday, had great reports at conferences, and I am getting ready for bed so I can go tomorrow and have the tenth surgery of my life (sixth on same knee). Isn't that ridiculous? And I'm a fairly healthy person, or so I always thought. I must be wrong. Michael has never been in the hospital. I am really hoping this will be my last one, but that isn't very realistic. I have already been told I will need a knee replacement some day. Hopefully when I'm 80. A girl can hope.

Tuesday, October 12, 2010


Akila has Cyclical Vomiting Syndrome (CVS). She use to have bouts of vomiting about every 2-3 months, and once a year or so, she would get dehydrated and we would need to go to the ER for an IV and then we would leave. About two years ago, the Dr.'s started her on a medicine Periactin, which was to prevent the vomiting issue.

They think the CVS may be tied to migraines, which I know all about. She does always get a headache with them, and is sensitive to light. I think they are right. Since being on Periactin, she has not had a bout of vomiting, in over two years. We took her off of it in the end of July as the the same enzyme in the liver metabolizes this medication as well as another so we decided to give it a try.

Akila came home with a headache yesterday. I thought she was faking and didn't want to go to dance. Shortly though, I realized she was not faking. As soon as she started puking. I remembered though that we had also been given a medication, Zofran, to put under tongue and dissolve to help stop the vomiting. We used it, and it worked. Did you hear me? It worked!!!

She did not vomit anymore, although the headache did not go away. She laid around all night and watched TV, and was fine this morning. It was just so nice to actually see a medicine work. So often, you think a med might be helping with something, but you never really know. I know this worked. She always throws up all night when she is like this.

She was totally fine this morning, and attended the award ceremony with us and then school. I am so thankful!!! Praise the Lord for good medications that work!

Dr. Mackey

We had to get the kids up early this morning and be at an award ceremony at a country club for our Pediatrician, Dr. Paula Mackey. We left the house by 7:00 to be there by 7:30. That's early for us. Kids usually leave at 8 for the bus.

We nominated Dr. Mackey to receive the Family Centered Care award for Children's Hospitals and Clinics. We started with Dr. Mackey when Zeke was hospitalized as an infant at Children's with respiratory problems. She is amazing, and has given all four of my children exceptional care.

The ceremony was one hour long, and we arrived before Dr. Mackey. The Dr. in charge of the General Pediatric Clinic at Childrens, Dr. Sheldon Berkowitz, attended also. He was there before us, but we beat Dr. Mackey. So, I took this opportunity to strategically place Akila between the two Dr.'s. Ha....Ha.....Ha.

There were a bunch of other awards given out to staff, and they saved the Family Centered Care award for the end- not the best planning if you ask me. The kids did really well though, even Akila. Although she was not behaving like the other 3. She had a little bit of extra energy, nothing over the top, but funny. She of course thought it was very funny to be shaking the table, which was full of water glasses, juice glasses, coffee cups, etc. It was a quiet kind of noise, if you know what I mean.

I just mostly ignored it as the more you tell her to stop the more she does it. Then, she put her mouth on the edge of the table (which had a table cloth on it), and started biting it. When she stopped, she was looking for a reaction and Dr. B gave her one. So she did it again. Three different times she got under the table and crawled around. I of course, being the excellent strict mom that I am, ignored it all.

It is so funny. A few years ago, it is behavior I would have never thought I would put up with. I would have looked at our table as an outsider and judged me, the mom allowing her child to act like that. Now I know better. God has showed me differently. God gave me a taste of some really sour humble pie.

Thankfully, both Dr.'s were not phased or annoyed with Akila. Dr. Mackey was great at distracting her from time to time and it went well. When it was time for the award, to my surprise, they had our whole family go up with the two Dr.'s as they read a paragraph about how great Dr. Mackey is. Thankfully, Akila ended up standing next to her which again, worked out great. In the paragraph, Akila's medical needs were mentioned (it was taken from the words I wrote), and you would think that Akila was getting the award. I mean, Akila seemed to think she was getting the award. She beamed with delight when her name was mentioned, it was cute.

I don't mention names often in my blog (other than my own families), but I mention Dr. Mackey's as she is an exceptional pediatrician. If you are in need of a new one, or thinking of a change, I highly recommend her. She is thorough, caring, compassionate, resourceful and great with kids. And in the clinic, they have a Special Needs program in which they go above and beyond what they do for typical kids. The appointments are longer, we go through a Special Needs Coordinator to set up our appt's instead of the front desk, and we get a thorough care plan that can be used for school and recreational programs.

Monday, October 11, 2010


We went canoeing yesterday. Very risky, I know. I had bought a Groupon last spring to rent boats at Lake Calhoun and we had not used it yet. There were many times I wanted to this summer, but I could not do it without Michael.

What a gorgeous weekend to do it! A few weeks ago, I was thinking that we might not be able to use the Groupon so I was even more appreciative of this weather. We ate at Tin Fish which is a little walk up cafe on Lake Calhoun also, it has amazing food.

Michael and the boys went in one canoe, and the girls and I in another. It went really well, all the kids picked up the paddling very well and nobody used the oars as weapons, which was a fear of course. The biggest challenge was Akila's mouth. Nothing new here.

She could not handle it if there was a tiny wiggle in our canoe as she thought we were going to tip. And every time there was any kind of wiggle, she let lose with some lovely expletives- for all of Lake Calhoun to hear. You know how when you're on a boat on a lake, it seems like everyone can hear you in other boats and on the shore? Well I'm pretty sure they could. We were getting some interesting looks as Akila called Imani and I bas.terds, the N-word, A-holes, and some other lovely names.

We stopped a few times and I tried to explain to her that it was OK for the canoe to wiggle a little, we all 3 took turns wiggling our bodies to make the boat wiggle a little. I told her that unless one of us stood up and tried to walk, it was very unlikely that we would tip. This helped a tiny bit, but not enough.

Then there was the issue of steering. I was in the back and doing the steering. But if we were heading towards something, that was super far away still, she would freak out that we were going to hit it. I think her spacial perception issues due to her Turner Syndrome were coming into play a little. I tried to just calmly ignore her and make the turn way sooner than necessary.

Imani did a great job of ignoring her and she was the one who was mostly being yelled at. The great ironic thing, is that she wanted to get in and swim at the beach, yet she was deathly afraid of tipping. She is a great swimmer and had on a life jacket, but did not want to get wet. Then, at the beach, she was having a hissy fit over wanting to swim and get her clothes wet. You can't win with her sometimes.

It was my birthday "Sunday" so I chose the restaurant and the event and it was totally awesome. A really great day and I am glad we did it. Makes me itchy to go canoe the St. Croix River next summer which Michael and I use to do before kids. I am not sure if I could have patience to handle the "mouth" all day though, it may have to be something we do on a respite weekend.

Tuesday, October 5, 2010

Missing money

I have been really good at taking my wallet out of my purse and locking it and the van keys up in our safe. Or so I thought.

On Sunday, I realized I had some money missing out of my wallet. I wasn't sure if it was two or three twenty dollar bills, but I knew it was for sure two. I found Akila, and told her that I need help finding some money I had lost. She got mad and said she didn't take it. I said I knew that, but I needed her help finding it as she is the "observant one". We always tell her this, and it is actually true.

She protested a little. I then told her that I would not be able to do her hair until I found my money as I was so upset. She went upstairs to her room to look, and then went outside. She promptly came inside to tell me that she had found it outside. It was $40. I thanked her.

Last night, Hezekiah told me that she had $60 on Sunday but she thought she had $3. He had her show it to him, and he counted it for her and told her it was $60. Why he didn't come and tell me right away, I have no idea. The kids are usually pretty good at this. He must have gotten distracted.

After school today, someone picked her up from school for me and was going to bring her to dance but they stopped home to pick something up and change quickly. I mentioned to this person that if she saw Akila with $20, to let me know. She said that Akila had already shown it to her and it was in her pants pocket.

When Akila came downstairs, I told her I had lost $20 in her room when I was cleaning and asked her to help me find it. She went upstairs, but did not find it. I checked her dance bag. Didn't find it. They left. I searched her room for her uniform pants and shirt. Could not find them. I looked in the bathroom, and in my room. Finally, I found her pants under our bed. Sure enough there were $20 in them.

We could talk about possession and ownership and stealing until we are blue in the face. It is not going to stop. I have also learned, that it is not the best teaching time to talk about it when she has been caught. So I have learned to be casual about it, and then I am more likely to recover the stolen goods. And now I must be even more careful about locking up my wallet ALWAYS!!!!

Scheduled # 6

I went to the Orthopedic Dr. for my knee finally. I have a big tear in my medial meniscus, and am scheduled for knee surgery #6 on October 15th.

I am actually relieved. He thought it might be a major surgery. I have had 2 major ones, one big one, and 2 little ones. This is a little one, meaning arthroscopic. I can do this. Last time, I was off crutches by bedtime, 6 years ago. Now that I am in my 40's, I realize it might be a little more rough, but just a little.

Akila had her first incident at school this year. She hit a kid on the bus ride home and was written up. Not good. This is the first year where she has had an incident before the end of November. It usually takes her longer to get comfie.

The school has been doing her 3 year re-evaluation for special ed and I go in on Thursday for the results and for her IEP meeting. It will be interesting. She pretty much has an all new team this year since she is in middle school. I don't know them yet and they don't know me. It usually takes quite awhile for me to "prove myself" as not a crazy and lazy mom (although I feel that I am, but you know what I mean!). Akila can come off as quite normal. I thankfully have her great Aide who gets Akila well. I am especially concerned that they are not going to understand the need for no homework. But I will stand strong in this area.

Have I mentioned that Akila has started pointe ballet? That is the ballet they do on their toes with those weird (and expensive!) shoes? I think she is doing OK. I have hired some dancers to help her in class (yey Lindsey!), and that helps a lot. I will have to get some pictures of her in the pointe shoes, she is pretty excited about it.

We are having challenges with controlling her food intake (and mine, but that's another story). She has typically had very little appetite during the day, and eats like a horse all night. I found out from her aide that she has been getting two lunches at school and eating it all. And she is still eating like a horse at home. This is a side effect of one of her meds. Interesting that the first 6 , months she didn't want to eat much for lunch, now she is. Ugh.

I emailed the food service lady and they are going to limit her to one meal at lunch time. I am going to try to get some high protein snacks for her to have to help with her hunger.