Pseudotumor Cerebri

This is a post that I have been wanting to do for quite some time. Mainly because this is supposed to be a journal about my family. I want my kids to read this sometime and be able to understand why thier mom was the way she was. Also, alot of people that I run into always have the question "what is it you really have?" So I thought maybe I should do a post all about Pseudotumor Cerebri (PTC) or Benign Intracranial Hypertension (BIH). I completely understand if this post sounds way boring to some of you so feel free to skip. I mainly just want of record of what I have been dealing with for the past five years now.

My battle with this disease began when I was four months pregnant with Lucy. I was diagnosed with a viral meningitis. It was really scary and was hospitalized for it. The pregnancy was very difficult. The dr.s all assured me that Lucy would be ok and life would go back to normal as soon as I would give birth to her, but that I would be alot more susceptible to headaches. After I delivered Lucy I still suffered from extreme headaches but I thought it to be normal and didn't check back with my neurologist like I was supposed to.

Our life moved on and we sold our Hamlet townhome and we moved in with Karol. A few weeks after living with her I had a horrible headache and could not function. I was scared that I had gotten meningitis again. Tyler took me to the hospital and they did a spinal tap. Good news was that it was not meningitis but that I had Pseudotumor Cerebri. By the name of it it makes it sound like I have a tumor in my brain. There is actually no tumor. A phantom tumor is what a lot of dr.s call it. The minengies in my brain were not functioning properly. Your body is constantly procuding spinal fluid and the minengies around your brain secrete it. Mine were not secreting it properly so therefore fluid would build up around my brain and put pressure on it making my brain think that it had a tumor. So my body would act as if I had a tumor. Mainly I had alot of nausea and a lot of swishing sounds in my ears. The only way to relieve it fast was to have a spinal tap. Spinal taps, oddly enough, became my best friend. It was the only thing that kept my head from hurting. The hard thing about spinal taps is you have to be flat after them. As of today I have had around 13 or more spinal taps. The blessing in disguise was us moving in with Karol. Not really a blessing for her though. She had to take care of my family because I couldn't. To this day, I really believe that one of the reasons I was ment to marry tyler was because I needed to have the mother-in-law that I have. She kept our little family together.

I worked with a neurologist for quite some time and was started on medication. After a while he decided he could not help me and referred me to Dr. Digre up at the Moran Eye Center at the U of U. To this day she is still treating me along with a neurosurgeon Dr. Richard Schmidt. Dr. Digre tried me on every medication possible to treat this disease. All the while I am dealing with headaches every single day. Waking up with a headache and going to bed with a headache becomes a very hard life to deal with. I mainly felt bad for my kids. I just didn't have it in me to take them and do the fun stuff a mom should do. Luckily I was blessed with wonderful kids who are very understanding and patient. And with wonderful family and friends who help me with my kids. I am truely a product of family and friends helping me raise my kids. I honestly have not raised my kids.

Here I am five years later and still dealing with all the same issues. It has been a very frustrating last few years. Tyler and I decided to have a surgery to try and help me out. There are two different shunts that they can use to try and relieve this pressure in my head. The first is a VP shunt that is actually placed in the head with a tube that goes down the neck and end in either the heart area or the stomach area. Which ever the surgeon decides is best. The second shunt is an LP shunt. This shunt is placed in the spine with a tube that wraps around the waiste and end with a drain in the stomach are. Tyler and I decided to start with the LP shunt.

This is as close as a picture I could find to show what it looks like. I had the surgerly done on July 27. Today is August 14. and I am still down because of the surgery. I have had some headache relief. The last few days I have been feeling some tightness in my head and so I am to stay down hoping that the shunt will unclog itself. There are many things that can go wrong with this shunt. It can cause Chiari (where the brain is sucked down the spine), it can cause many infections, or it can just simply malfunction or pop out of the vertibret that it is in. We are hoping that none of this happens to me. This surgery has been a lot more difficult to heal from than I had expected but I am hoping that it will all be worth it. If I do have to many problems with this shunt, then we will try the one in my head. Strangely enough, I almost wonder if I would rather have the one in my head. I don't think I would feel it as much as I feel this one. It is very uncomfortabel moving with it. I can feel the tube around my waist, which makes it difficult to get in a comfortable position to sleep in at night. But then I always think, "Would I rather be uncomfortable or would I rather have part of my head shaved?" Tyler thinks I am crazy that I am most worried about getting my head shaved with the other shunt, but a girl needs to worry about her hair!

I am very glad I got the shunt because it has given me headache free days, and I forgot what that was like. It is very frustrating to still be down but I know it won't be forever. So far I think the shunt is a success. Anyone out there that has this disease.....I highly recomment this procedure.

Poor Ellie.....It is her 9th bday today and I am down. Tyler is having to be quite the Mr. Mom. He is making her birthday dinner tonight and is doing her friend bday party tomorrow. I feel like I have missed out on so much with my kids. All Lucy knows is me being this way. Ellie and Philip keep asking me if I am ever going to get better and that really breaks my heart. They remember before I got pregnant with Lucy and all the things I would do with them. The kids today think Tyler is the only one who can have fun with them. I am soooo greatful to have such a wonderful husband who will take over the whole household. I am not trying to be cheesy by saying this about tyler. I honestly don't know who else I could have married who would have taken over this family the way he has. He literally works his more than full time job and takes care of the household and kids. He is teaching Philip quite the cooking skills. I am proud to be apart of this family!

The birds and the bees :)

WARNING the content of this post contains "the birds and the bees" information. Please be advised ( I will try to keep the language at rated G level) as you read on........

The fourth of July this year will definitely be one that I will always remember. This is the year that my little boy "officially" grew up! Tyler and I have been debating lately whether or not it was time to have THE talk with him. Last year was the year they held the maturation (sp?) class for the fifth graders. Philip was gladly relieved when we were on our way to Olivia's graduation down in Cedar City on the day it was held. In fact, Philip never told us or gave us the letter about the class. We found out later from someone else that it had taken place.

Tyler and I kind of came up with an agreement that he would talk to Philip about things and I would talk to the girls. Which I did think was a little unfair since he only had to do the talk once and I will have to do it THREE times. However......I helped out this time so I think Tyler should return the favor when it comes time.

Now let me say that this was not something that we had planned on doing this holiday....something that just happened. AND I must say that I was very pleased to see how clueless philip actually was. I thought for sure that him and his friends had had talks about what they think IT really is. Which they have, but really didn't know.

My sister Darci came up with her boys on friday to spend the day, do a little boating on my dad's new boat, eat, play games, and just spend time as a family. My parents went up to The Sound of Music play in Miday (my dad was being honored as an artist and the architect of the legacy bridge in Miday......love ya dad!) so Tyler, Darci, Philip, and Colton and I were sitting at the table talking about random things (alone...no grandparents around). To be honest I am actually not sure how the subject even came up. But at some point, Colton stated that he knew what IT was. I asked him what he thinks it is (honstestly thinking that he would say kissing and laying in bed together) and he point blankley told me. I looked over at Philip and his mouth dropped to the table. Tyler and I looked at each other and thought "well......now we have some explaining to do!" So the next half hour to forty five minutes were full of explanations and questions from both boys.

I will admit that the conversation went over a lot more smoothly than I had imagined it to. I was terrified to have this kind of a talk with my child. I watched Oprah one day and it was on what was an appropriate age to talk to your kids about the birds and the bees was and how to have the conversation. There was a little girl on there at about the age of 10 and her mom and Oprah told her all about it. She took it so well and so maturly. I remember talking to tyler about it and saying how Philip is 11 so...according to Oprah we were a year behind. Both of us just kept putting it off. Now that the conversation is over , I am glad we had it. Philip was embarrassed while we were talking and got very red during some of the conversation.....but I know that he will come to us now when he has questions. I also think he was more comfortable having the conversation with Colton. I am so glad that Philip learned it from us. I always want my kids to feel comfortable to come and ask us questions and now I think Philip is.

So....one down, now three more to go. That shouldln't be awhile cause according to Tyler our girls won't be allowed to say hi to a boy till they are 21!!!

Happy Father's day to the two best dads in my life!

I couldn't let this Father's Day go by without honoring one of the best dads in my life. I could never ask for a better dad for my kids than this guy. Even when he is torturing and doing this to the kids.......................

Tyler is the one who knows how to have fun in this house.........even though someone always ends up crying in the end.

Just kidding hon...you are the best. I would be nowhere without you. You are the best Mr. Mom any wife could ask for :)

The other best dad ever that is in my life is my dad.....eventhough he is almost eighty (love you dad) he always has the energy for all of his kids and grandkids! Isn't he just the cuttest papa smurf guy out there?

One thing I would not have right now is my house if it wasn't for this man.

Isn't he the most talented architect you know? I remember when I was a senior in high school and he had a heart attack, I told him he couldn't die yet cause he wasn't finished raising me. He always says that I am catching up to his age but just remember dad....you will hit 80yrs way before I hit your age!!



This man can sleep anywhere!

Happy Father's Day to all you great dads out there!!

Daddy Daughter Dates!!

Last week I went on a trip to Seattle with some girlfriends. Tyler took the time off and stayed home with the kids. What a guy!! Everything seemed to be in control when I would call and check in accept for when Maggee told me Lucy feel asleep totally naked in her bed and dad didn't see the point in waking her up to dress her , so he let her sleep that way. The house was even picked up and everybody was alive when I got home! I asked him how things went while I was gone and he said that he had quite the daddy daughter date with the girls. Philip stayed home and Tyler thought it would be nice to take the girls to lunch at a nice restaraunt (olive garden, which is where tyler always has to go) and spend some time with them. He said that they were seated in a booth that was in a closed area with a lot of other people. Lucy said she had to go to the bathroom and Ellie said she would take her. After awhile, Ellie came back alone and said that Lucy was still in the stall sitting on the toilet singing, and grunting at the same time. Ellie was embarrassed so she left Lucy in there. Tyler said a few minutes later Lucy came running to their table just as excited as can be and said VERY LOUD, "Dad, my poop, it just slipped right out!" Tyler said everyone in the booths around them heard and started laughing. Now anyone who knows Lucy, knows that bathroom time is very serious stuff. She takes her time. And if you walk in on her she always says, "Don't come in here, it stincks!!" Or she is very polite and warns you not to go in the bathroom when she comes out because it may stinck for a while. What can I say.....Lucy is Lucy!!!

Posts from the past

Tyler finally got all of our pictures in just one place. I was looking at them today and thought it would be fun to do some posts about my kids from their earlier years since blogs didn't exist back then. These have been alot of fun to look at. I didn't realize how much my girls resemble each other as babies. But I must admit that some of my favorites are of Philip when he was little. So here are some past photos in no particular order. ( I'm too lazy to arrange them how I really should :) !)

Maggee Jane. My most mellow baby!

All of my girls have broken a bone. Here is Ellie right before I had Maggee.



This is Ellie sitting by grandpa Phil's grave. I forgot how bald she was as a baby.



Philip and Ellie. Wow!!! Not potty trained yet!! I remember the days with two in diapers.



I know I am biased but I really think that Philip was such a handsome little guy!



Like most little boys, Philip was obssessed with trains. When he was born Thomas the Train was very hard to find and very expensive. So he loved the movies but really didn't have the toys.

I love this picture. It was taken on Mother's Day 2002.

Phililp is like his mom and is very allergic to any kind of insect bytes or sting. He got stung by a bee right inbetween the eyes here. My mom always had this magic mud that she made that worked miracles. The poor kid!



Good old Lucy. I really do miss her baby stage.

Maggee Jane.




Maggee and Philip. I must say that Philip's looks really don't change as he gets older.



Philip annoyed that we were taking pics.

Lucy again.



I love this picture of Maggee. She is my little sport guru. She loves any kind of sport and is quite good at them.

Sweet Ellie. She has always been the quiet and shy one.



My kids aren't soo little anymore. It is hard to believe that phililp is eleven now and will no longer be in grade school. Not to mention that he is almost in young mens. Next year is Ellie's last year in grade school. Maggee will be baptized on her next birthday. And Lucy is four. Only one more year and school officially starts for her.

Dancing With The Stars

So I was getting Lucy ready this morning to head out the door. Got her dressed, brushed her teeth, put her shoes on, and she ran to my full length mirror to check herself out. After a minute or two of smiling really big at herself and modeling she turned to me and said..."Mom, I look like I should be on Danicng With the Stars!" Not quite sure why she thought that. Really people, I don't dress my 4 year old in skimpy (but in Lucy's opinion very beautiful) outfits.

When we watch Daning with the Stars in our house our conversations are usually about the outfits not the dancers. I rate the dances but my girls always sit and talk about the outfits. Right when they come on the floor all three girls usually give their opinion on whether they let the girls costumes or not. Yes my dream of having dancing girls is being smashed a little. Ellie would rather do anything to do with art, and Maggee loves all the sports and is begging for gymmnastic lessons. I do have a little hope with Lucy. She dances all morning long and loves to have people watch her. She does sing a ton too. So I think the singing may win out....let's hope she has a good voice. Of course I think it is beautiful right now, but what little 4 year old doesn't sound cute when they sing?

So back to Lucy and her outfit. Really all she had on was some camo (yes, camo) capris and light blue shirt and hoodie. She had on her favorite red butterfly shoes. I will post a pic tonight. I used to be very picky about what my kids look like, but I am afraid I've lost the passion. I can do that on my last child.......Right??

Lucy Belle

I found this cute video of Lucy as a baby while we were living with Karol. Just thought it was so cute, I wanted to share it. (Yes...Lucy had horrible hair as a baby. It always looked like a rats nest but we still loved her!) She pushes this toy around for a little while....but keep watching to see how cute her laugh was.

Did you notice how long my hair is? I was thinkin about cutting my hair because of all the hair I have been loosing lately.......but I think I am going to tough it out and keep growing it.