Not Me Monday 11/30/09

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.
Short one this week. I would never obsess over cleaning the toy room for three hours last night. I would not throw a major fit over the wreck it was in and demand all my children to leave the room. I would also never threaten to throw out every single toy in the house if this room ever looked the way it did again. Unfortunately I have no before picture so no one has a way to know whether or not I was truly over reacting. I still think I wasn't. Mostly because I never over react. Never.

This is what it looks like now and I'm serious on that threat. I would never make a threat I don't intend to keep.

Not ME!

Side note of shameless plugging. Will those of you who read this blog that have special needs kiddos please visit my community on the left side and leave some stories in the discussions I posted. Come on I know you have them!

5 Question Friday 11/27/09

Copy the following questions, post them to your blog and answer them...then, grab the MckLinky Blog Hop code and linky up...Thanks goes to  Mama M. for doing 5 question friday! Wanna join in but don't have a blog? Feel free to leave your answers in the comments!
 

Questions for November 27th: (Thanks to Adrienne and Tyler for their question suggestions!!)

1. Do you do a real or fake Christmas tree?

We always do a real tree. We always go the Saturday after Thanksgiving and get the tree. Then we blast Christmas music while we put up the decorations and have Hot Chocolate. It's a ton of fun and the kids love it. We also get each one a new Christmas ornament and write their name and year on it so they will have their own Christmas ornaments when they get older.

 
2. What is your favorite Christmas tradition with your family?

I think getting everything ready. We read the Christmas story on Christmas Eve also. We also must watch all of the Santa Clause movies sometime during the month. I think those three movies are hysterical.

3. Do you celebrate Thanksgiving in your neck of the woods? And, if so...how many calories do you think you consumed yesterday?
Way to many calories. I purposely did a protein day the day before to lose some weight in order to gorge myself last night! Turns out I didn't need to. Even after eating two pieces of pie and two helpings of stuffing I didn't gain anything today! Yippee for me!
4. Have you started decorating for Christmas, yet?
Nope we'll do that tomorrow.

5. What is your favorite Christmas cookie?
 I don't think I have one. I'm not big on candy and sweets. I do love peanut brittle and almond roca and those are two things I make every year.

 




        

Anyone up for a little Deep Brain Stimulation?

We are. Or at least we think we are. It's been interesting to go through a process of decision with my husband over the last few months. This will be a long post so I should probably start at the beginning or at least at the beginning of this decision making process. After Colby had his stroke we were told he basically had one year to make improvements. That after a year he wouldn't progress anymore and what ever state he was in would just be Colby's new reality. So I got a little frantic searching for answers. I kind of felt like we had a ticking bomb that we had to diffuse before we hit that year. So during this year I had seen some things about deep brain stimulation or DBS. Most everything I read said it was for primary dystonia and not secondary which is what Colby has.

So I focused on things that would work for him. We did 80 rounds of Hyperbaric oxygen treatment or Hbot. That helped him emotionally. He was like a different kid just one week into the start of that. We did Cranial Sacral therapy which helped him sleep just a few minutes longer each night, we did Botox and Phenol injections which help a little, and we played with medications, lots of different medications. The year mark came and went and he improved more in the second year than the first. He is our backwards boy.

Then this last September while being evaluated for Botox and Phenol shot positions the Rehab doctor got all excited! There was a new doctor in town and we needed to go see her right away. So I called the next day and turns out she was really new like 2 weeks new. She hadn't even figured out what days she would be working yet so they said they would call us when they had the October schedule opened up. I figured we'd hear back in a week or so and that it would be at least a month away. I mean it's hard to get into neurologists these days! They called back the next day and wanted to know if we could come in two days later! So off we went down to Salt Lake City.

Dr. S spent an hour and a half going over DBS with us. She video taped Colby and went over everything. This is what we learned. It is not FDA approved for kids under 7. She didn't know if our insurance would cover it. She didn't know if the neurosurgeon would operate on him. He does adults not peds. She didn't know if a study could be set up. She didn't know if we could expect it to help him because it's never been done on a 4 year old for secondary dystonia. She didn't know if the area of Colby's brain that needs to be alive was even alive and could be stimulated with the DBS. ....... You get the idea. There was a lot we didn't know. The one thing she said that John and I both agreed on was that we won't know if it will help him until it's done but there is a chance that it can help him so she feels morally and ethically responsible to provide it for him in the chance that it can make his life a better life.

So we left with a lot of questions. We had lunch with my wonderful friend Sara and drove home full of confusion. We talked about it. How do you subject your kid to an experiment basically is what we discussed. With out knowing what will happen or if it will even help. We did know that it does help with Parkinson's and with Dystonia. There is some evidence that it does help with secondary Dystonia in adults not as dramatic but still helpful,and that the younger you receive the procedure the more it helps.

Thursday night the doctor called us. She had gotten his MRI and looked it over. Good news. Great news actually. The area is alive and well! She spoke with the neurosurgeon. He feels that it would be a good idea to go forward with this. Now it is being reviewed by an ethics committee. Standard procedure for when something is not FDA approved. Once that happens we will need to go down and have Colby evaluated again without medication and after the Botox and Phenol have worn off. That is not going to be a fun drive to the doctors office. It will be painful for Colby as his muscles spasms will be in full uncontrolled force. It will be awful for me because my child will be screaming in pain and it's something I could help him with. But to find the most precise area we must see what his body really does not masked by medication. After that he will need to be evaluated at the gait assessment lab at Shriners hospital. Next comes a more specific MRI with special dye to pinpoint the exact location. Then we will meet with the neurosurgeon to make the final decision and schedule surgery. We're looking at another 3 to 6 months minimum. Then because it's secondary Dystonia it may take 12-18 months to see the effects of the surgery. So the decisions we make today might not even have results until sometime in 2011. Insane.

The longer we talk about this and research it the more we also feel an obligation to Colby. This will be a long process. It might not work. We are told to have no expectations for the surgery. But if we don't do it how will we know what could have been. We won't and so because we felt peaceful after discussing our options and making the decision to move forward we are confident that this is an experience we all need to go through and for now that is enough.

Not Me Monday 11/23/09

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.
What to say? I don't really remember much of last week. It was pretty repetitious. Other than a surgery for Jahnna. But even that in and of itself is repetitious. We are always at one hospital or another it seems.
****After typing this and looking at the pictures I realized we did do a lot so I guess maybe my memory is just shot these days!***

So I would not get bored with the routine of my life. That would be crazy for a mom right? I would not wake up everyday feeling like ground hog day. I would not tell my 2 year old to not watch tv so that she would watch tv and stop screaming at her sister for 5 minutes. Did ya catch all that? Reverse psychology is so effective in my family. Sometimes. Or not really but I still try anyway.

I would not just send both of my girls to their respective rooms because they had been screaming at each other for the last two hours. Or since they both woke up. That would not be dealing with the situation and handling it effectively. Ok it was very effective for 2 minutes until Riley came out and insisted she was ready to be nice. I would not send her back to her room telling her I wasn't ready for her to be nice and I would come get her when I was ready for her to be nice.

You would think that having Jahnna's tonsils removed last week would make her throat sore, thus allowing us some semblance of quiet in our home for the next week. But no! She would not be bouncing off the walls 5 hours after surgery demanding to go to the store to find something "good" to eat because I didn't buy anything good that was soft enough.

Anyway it was a good week. I think this morning I'm just a bit irritated with the girls. In case you couldn't tell.

I did get to speak to Colby's Gastrointestinal doctor this week and I think we might have his vomiting under control. She put him on an old antihistamine which seems to be working. His GI track was inflamed.  I also spoke to his new neurologist about the deep brain stimulation. More on that hopefully tomorrow.

For now I'll leave you with some pictures.

Jahnna at therapy with Colby. She wouldn't stay at home because she wanted everyone there to know she had her tonsils removed.

Colby getting his feet casted for new dafos.  He didn't really like it but I told him not to smile for a picture and see it worked!

Again him Not smiling!

Not the best shot but he's reaching to knock the trucks down the ramp. It's teaching him how to control his arm movements. He thinks it's hysterical to try and hit me while I pretend to sleep at the bottom of the ramp. What a naughty boy!

Riley Not listening to mom about needing a jacket in a snow storm. It was just starting to snow but we got a pretty good amount. I don't think it's going to melt this time. And yes I would not send my child to church in sneakers because she out grew her church shoes. I would never do that.

My girls are Not my girls because they love the cold weather and turn into huge wimps when it gets above 80 degrees. They always want warm jackets and gloves on when it is 32 degrees outside. Or not!

Jahnna's tonsil removal

I love our Ear Nose and Throat Doctor. He is amazing. He does the whole procedure on a closed circuit camera with the parents watching. If you want to. And I did want to. I just missed half of it. I've watched him put in two sets of tubes into Colby's ears but I've never seen a tonsillectomy or an adenoid removal. Anyway I got John and Jahnna up and dressed and off to the hospital. Then I had to get Colby up and dressed and onto the bus. Riley spent the night at Grandma's so I didn't have to worry about her. That was a big help this morning. Plus it means I got to sleep from 12:00 to 5:30 with no interruptions. Nice!

Anyway, Jahnna had huge tonsils going into this. We knew that but to actually see them removed made me realize just how huge they were! Plus her adenoids were pus filled and infected. I had asked her repeatedly over the last few weeks if her throat hurt and she kept telling me No. But her cough just wouldn't go away. So anyway they were infected. The doctor said it really wasn't a big deal he just put her on a slightly higher dose of antibiotics than she would have been on.

Jahnna did really well even waking up better from the anesthesia than I thought she would. Of course she was grumpy for about a half an hour. She kept saying her throat hurt even though they gave her morphine. And I have never seen a kid blow their nose so much before. I guess it's normal after this surgery but she's already been through three full boxes of Kleenex in two days. She wanted to go home 10 minutes after waking up. She's definitely like me in that department. I'm done get me out of here. We waited around through three sets of vital checks and then they let her go. I went out to get the car and bring it around. Jahnna decided to throw up the entire bottle of apple juice she drank all over her dad! I was never so grateful for a cold morning and the need to warm up the car!

I have a video of the procedure but since my DVD drive on my computer doesn't want to open up I guess I won't post it. For those of you with strong stomachs, here is the before, after and removed tonsils. Don't say I didn't warn you! It's a bit blurry but it's the best I could get. The top left is the before, the top right is the after and the bottom left is her tonsils out. She's a trooper and did an awesome job!

Not Me Monday/There's a mouse in my house

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.
I would never run to grab my camera to capture this

or this

or this

I certainly never would have laughed while asking her what the heck she was doing? Her reply "I'm eating cheesy." I think we have a very large mouse in our house.

I also would never quietly sneak to get my camera and peer around a corner to get this shot.

Jahnna is getting so big. I was annoyed when I went into the living room and saw that the light was on. But before she noticed I saw that she was in there reading a chapter book to herself. She's read 8 chapters in 2 days. Not bad for a first grader. She will have plenty of time to read to herself this week since she gets her tonsils taken out tomorrow.

And no I did not spill two cups of tea, one bowl of soup and one bowl of beef broth all over my counters yesterday. That would have to be a serious case of clumsiness that I would never display. Not Me! Oh and Megan the soup was wonderful and no I didn't spill all of it but that stupid rubber ring on the bottom of the bowl is to blame! Not Me!

Thankful for the thorns bouquet

I never did get around to getting my Thankful for the thorns bouquet last year. Maybe because life was still a little hectic and crazy. This year I have much to be thankful for. For the moment we are all healthy and happy. We still have the chaos.

Jahnna is having her tonsils removed on Tuesday. John is still recovering from having 3 vertebrae fused together. Colby is still throwing up a lot but at least he's happier. He's laughing and smiling more, sleeping a little longer (30 minutes at a time but still  that's big for him!) Riley is getting into everything but she's also growing up and continually making me laugh while I want to wring her neck!

I'm doing better. I finally have my mono/chronic fatigue somewhat under control. As long as I take b12 shots I'm good. Things are looking up. We've managed to finally adjust to our world as it is now. For the most part. On a good day.

OK really I feel like I've been doing better and I'm happier than I've been in the last two years so for what it's worth I feel like we're in a good place now. In case you haven't read the Thankful for the Thorns story you can go here or here to read it.

So here is my Thankful For The Thorns bouquet.

 

And here is what I did with the roses. There's only 5 survivors because Riley and Allie decided I needed a rose petal covered kitchen. It was very beautiful but it had to go and before I got a picture of it! Thanks Megan for sweeping the kitchen though! 

 

Communities reaching out to kids with special needs.

Here's an article that made me smile and cry all at once. Just click on this link LDS Living.  I grew up near this area and probably know some of the older members from there from when I was a teenager. Not only were they able to produce a play in honor of a heart transplant recipient and a donors family but they were able to adapt the play to include a teen with special needs. Truly amazing!

5 Question Friday 11/6

Copy the following questions, post them to your blog and answer them...then, grab the MckLinky Blog Hop code and linky up...Thanks goes to  Mama M. for doing 5 question friday! Wanna join in but don't have a blog? Feel free to leave your answers in the comments!




Five Question Friday, 11/6:


1. What is your dream job?
SAHM but I still feel like I want to do something more. I'd love to do life coaching or something like that. I'd also love to write a book but have no idea what to write on or how to get started. Why I want to write  a book I have no idea but it sounds cool!

2. What song could you play over and over?
Silence. I love silence right now. No music no song just silence. It's a rare moment at my house when it's silent

3. Do you prefer to talk on the phone or text (or email)?
Talking. I hate texting. Maybe it's because I have a stupid touch screen phone and I have to keep deleting letters or just because I like to gab with someone other than a 2 year old.

4. What is your must have beauty product?
There's not just one. I have to have my eyes done. Eye shadow liner and mascara, then powder. I rarely do anything else.

5. What is your favorite Michael Jackson song?
I don't have one. Seriously I never really like Michael Jackson. Thriller creeped me out even in the 80's.

Stupid e.Coli 0157

I find it somewhat amusing (in a detached from my life kind of way) the things that trigger grief, anger and repressed emotions. Why would watching Csi Miami on a Wednesday night with my husband make me angry at the changes in our lives?

Well they had to go and jump on the e.Coli 0157 bandwagon. So as I was laughing (bitterly) at some of the mistakes they made during the show, like you don't get sick an hour after you eat. There's that whole pesky 7-10 day incubation period that interrupts t.v. show time lines. I was also getting mad about a stupid little bacteria that stole my sons ability's from him

How something so microscopic can take a two year old from this

to this over a two week period of time.

It still baffles me and makes me angry all at the same time.

Granted, there were a lot of medical mistakes made. It seems like every bad decision that could have been made, was made. But that is a different story. Crazy that it all started with that stupid e.Coli.

I wish I could get over being mad. People who know me in real life always tell me how happy I am. For the most part, I am. I believe in God. I know he has a plan. I trust in his plan. I know there is a purpose for the trials we all go through. But I'm stubborn. Part of me wants to be mad.

Colby gets worked on by a wonderful woman. She does Cranial Sacral work on him. Recently she started doing some on me too. She always ends up back at the same spot over my heart and my left lung. She says it feels like I'm holding my breath. I laughed cause that's part of how I block pain by laughing.  I've been holding my breath since John woke me up with a phone call saying they were life flighting Colby to Primary Childrens Hospital in Salt Lake City.

I've been holding my breath since the doctors said Colby had a stroke. I've held my breath with very surgery and procedure that he's had anaesthesia for. Some days I feel like I've been holding my breath for so long I've forgotten how to breath. And that's when the anger surfaces. Because under that feeling of not being able to breath is trapped a whole bunch of anger.

Anger over the mistakes, anger over the losses, anger over the changes, anger over the effect it's had on the girls and our marriage. Anger over the anger.

It's not like all the changes have been bad. Our marriage is stronger in many ways, but there is now different worries and stresses. Our biggest stress used to be finding a babysitter to go on a date. Ha seems so insignificant now. Different changes for the girls. Riley thinks this life is normal. She doesn't know any different.

Jahnna struggles with it. Yesterday was her second counseling appointment with a psychologist. A psychologist who at least acknowledged that I should be frustrated that she's telling my daughter the same things I have told her, her entire life. Her theory is that maybe if she teaches her some coping skills then she can get her anger under control. Gosh, cause I haven't tried that or read every book there is to read on helping siblings cope with traumatic events. It's only been two weeks so I'll give it a bit more time and then we'll see what to do later.

I suppose in the end anger isn't necessarily a bad thing. The pain of anger reminds me to breath. It reminds me to live. It gets me out of a funk. It makes me more proactive. The angrier I am the more therapies, studies and treatments I research. Anger keeps me from giving up on days like yesterday when I was tired and overwhelmed for no real reason. I think I'll hang onto my anger a little longer.

Halloween

So I'm a couple days behind. Again. Not really much of a surprise but I'm working on it. We had a fun Halloween. John kicked my car out of the garage to hang plastic up for the haunted garage two weeks before halloween. He wanted to get most of the big black plastic sheets hung up before his surgery. Then he had his brother and some neighborhood kids come over and help with the rest on Friday and again on Saturday morning.  Unfortunately all of my pictures of the haunted house didn't turn out! Bummer.

Jahnna decided to take some pictures of random things and she caught me twice. I figured I'd include them just to prove I do exist.

Here's me reading a book while waiting for Colby to fall asleep.

Here's Halloween Dinner. Creepy Crawler Pizza. Cheese pizza topped with curly fries, hotdogs, green olives and ketchup. Sounds pretty disgusting but ended up being pretty good.

I got ambitious and decided to make French bread. Did all right except the top burnt a bit. I can't believe I finally got a loaf of bread to rise. I guess it's a good thing I haven't totally given up on baking.

Jahnna was a Velveteen Kitty. I don't think her eyes can get any bigger in this picture!

Allie and Riley trick or treating.

I really should not take self portraits but here you go anyway.

Colby getting excited for trick or treating.

Ashley, Kaycee and Riley.

Jahnna waiting to get started. She got a little impatient.

Ms. Kim sent home the Super Talker for Colby to go trick or treating with. We're still working on the eye gaze part of his dynavox so we decided to go with this this year instead. Daddy recorded a very Scary Trick or Treat under baby bear. Colby loved hitting the switch with his head. He likes that it talks for him and gives him a voice again.

Here's his wheelchair with the head switch attached.

The button had a trick or treat sticker on it.

We forgot to carve pumpkins on Friday and Saturday so we did it on Sunday instead. I guess it's better late than never. Jahnna loves to get messy.

I took Riley's shirt off since she is so messy. She had a blast.

Daddy scooping out seeds.

Jahnna scooping out seeds

Colby got a kick out of dad's face. He thought he looked pretty funny. He had a lot of fun and was pretty tired by this point and was almost asleep.

Here's the last picture of me that Jahnna took. Colby sleeps on the floor now. It's safer for him. He's rolled himself off the bed several times even with a side rail net. He can push himself up and through the opening on either the top or the bottom. So the bed has become a chair. Anyway he likes me to come lay down with him while he gets sleepy.

Over all we had a really good weekend. John did way to much and now his back is super swollen again but he says it was worth it.