Beating Chiari~Because Anything Is Possible with God!

Brian's Tree

2012-01-29T01:02:00.000-06:00

I would like to share the story of "Brian's Tree". My brother was killed 14 years ago in a car accident. He was actually with his track team and they were coming back from a track meet, when the driver fall asleep. Several of the kids were injured, but my brother was the only one that passed away. That day is still craved in my head like it was yesterday. Gosh, I miss him. But, I know I will see him again one day. About the tree... A month before he was killed him and my father planted a tree at a local Elem. school, which he had attended his whole life. That Live Oak Tree has grown and grown and is beautiful. Now all the local schools in our town are getting built on to and remodeled, which is awesome for our town. My children now attend the same Elem. school and we live right behind it. Through this construction I learned a few weeks ago that the tree would have to be cut down because that is where the drive-thru was being built. I was on the phone; talking to my dad, talking to the principle, finding a tree company that could save the tree. I found one and today the tree was moved. It was moved back by one of the play grounds so that the students can enjoy it and I can see it from my house. Here are some pictures. My heart is so warm tonight and now we just pray that it will take off and survive.

Before

What a Week

2012-01-14T19:00:00.000-06:00

This week has been nothing but CRAZY busy. I had a VERY busy week at work. 50 hours and more computer work to get done this weekend. But, I am so HAPPY that Monday we are closed. The kids are out of school and I am looking so forward to just ENJOYING. Today I went and brought the book, "Heaven is for Real". I also brought the kids version and are looking forward to reading it to them tonight. I have heard the book is awesome. Back to the week. Wesley went for his third sleep study and they have determined that his sleep problems are from the Chiari and Brain Trauma. He will be getting a Cpap machine to help him at night. I am hoping and praying that him getting more sleep at night will help his overall health. May even help the headaches some. We will be getting that prescription soon and getting that for him. I know that we have been receiving prayers involving Wesley's job. I am very careful about what I say; because honestly I am a bit angry at some things that have been said about Wesley. Wesley is my angel/hero/husband and I will fight for him and take up for him. So it is hard for me to watch it, but I do. God says to forgive and forget and that is what I am trying to do. But, anyhow, Wesley will be keeping his job. He LOVES his job and is fighting with everything he has to stay at work. He could have already gotten disability (doctors say) a long time ago, but he does not want too. For now, Wesley is going to continue to work as much and as hard as he can. Praise God!!I took Breanna and Kyra to the doctor. Breanna failed her hearing test at school, but at the doctor her hearing was fine. So no problems with Breanna. Kyra got her yearly check-up. She is doing well. She is little, but the doctor was not alarmed by it. Because of our insurance another referral had to be made for the MRI, so we should be hearing a DATE soon. I am thinking March. The headaches have been coming more often. I have not a clue if that means anything or not. I just pray and at this point I know everything is in Gods hands. A few words of encouragement that I would like to share that have helped me this week: By Beth Moore**The giant step in the walk of faith is the one we take when we decide God no longer is a part of our lives. He is our life. **Patience to wait does not come from suffering long for what we lack but from sitting long in what we have. Have a great weekend!!

Crazy Week

2012-01-07T22:36:00.001-06:00

This week has been crazy and stressful. I have been crazy busy at work. I had a training class in Dallas on Wednesday so that involved a lot of driving. I really do love driving, but I was a nervous wreck by the time I got to Dallas. The traffic was horrible. To describe my week..As I am driving I get about 30 miles down the road and I stop to get gas in the town that my grandmother lives in. I visioned myself going to her house. Peace and comfort came over me. I visioned talking to her about what all is going on. Hugging her. And then going into her guest room, sleeping, and hiding from the world. Of course this was just a vision, I kept driving straight to Dallas. But, this week honestly I have wanted to run away. Every morning I TRY hard to read a little. Right now I am reading Beth Moore. I have quickly reminded myself that God has a plan and everything will work out. My God is huge and my God is able. If I don't get what I ask him for, I know I'll get something bigger. ~Beth MooreWesley is going into the hospital Wednesday night for his third sleep study. We heard from the sleep doctor today. I really like him. He keeps us so informed. He studied Wesley's last results and he wants to do this third study to try some different machines on Wesley. This is what he thinks is going on, but should know for sure after the next study. Doctor thinks that because of Wesley's brain trauma; his brain is telling his lungs to stop breathing when he falls asleep. There is a machine that can help with this and maybe he can finally start getting some rest which will probably make a lot of issues better. This condition can get worse over time and the outcome is not good. But, I am choosing not to focus on that right now until we know more. Prayers are welcomed and I know we are getting TONS!!((HUGS)) Everyone!!

Appts.

2012-01-02T23:04:00.000-06:00

Around working today I called and got some appts. made. We have not heard when Wesley will go in for his third sleep study, but it should be soon.He was sick over New Years and is still recovering. I go to the Dr. Friday. I had to have a CT Scan completed on my sinuses, before Christmas. The doctor thinks I have bad sinus problems. We will see, I think I believe him. I will get those results Friday. I made Kyra's yearly well-check. The doctor will check weight, etc. I am waiting to hear back on her MRI appt. Breanna had a hearing test completed at her Pre-K and she failed. So it was suggested that I get her hearing checked. I am taking her when I take Kyra so that the doctor can check her hearing. I honestly do not think she has any hearing problems, but I guess we will see. Better safe then sorry. I feel that a few things were taken care of today, around work that I am up to my eyeballs in. And now I sit with my eyes barely open waiting for the girls to go to sleep. Yes it is 11:00pm. I am pretty sure Wesley allowed them to nap earlier while I was at a PTO meeting; even though he says he did not. I chose to smile :)Goodnight!!

To Continue..

2011-12-31T21:10:00.000-06:00

After getting back from Disney World we enjoyed the summer. I am still working with Child Protective Services and I love my job. Many ask exactly what I do there.. I am a "Ongoing Worker". This means that I work with families for 6-12 months that HAVE NOT had their children removed. They may need help with Drugs, Parenting, Counseling, etc. That is what I do. I love helping people. Wesley is continuing to work as much as he can. At this point he is not ready to "give up", he wants to continue to work and hopes that with time he will get better. In August it was time for the kids to go back to school. Haley started the 8th grade, Blake the 4th, Kyra Kindergarten, and Breanna Pre-K.This was the year that Kyra and Breanna would part ways and be at different schools. Kyra's school started a week before Breanna's. For that week Breanna just laided around and slept; no joke. It was sad. But, they both ended up adjusting. They are always thrilled to see each other at the end of the day.

After school started life got VERY busy and has stayed that way. Blake turned 9 in August and Kyra turned 6 in November.

Time continued to fly and now Christmas is over and the new year is almost here. A Chiari Update.. Kyra throughout this year has done pretty well. She has not showed any other signs of problems besides the headaches. When she gets a bad one we just give her Tylenol and comfort her. If she has a crying fit; it will bring a headache right on. When we had her yearly MRI in March 2011 nothing had gotten worse and the doctor did not want to do any surgery on her at this time. That was an answered prayer for us. Wesley continues to be a different story. He stuggles almost everyday. Without going into great detail; doctors are now trying therapy on him, a Tens Unit, and just managing pain. His biggest problem are the headaches and when they get really bad, which is often, he throws up and gets sick. At present time he has had two sleep studies done and they have found that he has severe issues with sleeping. After the 1st of the year he will have a third sleep study completed and the doctors think he may have another condition that is caused from Brain Trama. More on that as we find out. That is where we are. Kyra will have her yearly MRI in March. Everything will be ok with God on our side. I have faith that 2012 is going to be great. Happy New Year!!

2011 in Review

2011-12-30T23:46:00.001-06:00

What better way to get everyone up to date then to end 2011 with a "Review". I had "Fred" my gallbladder removed in Feb. 2011. I am so glad I did. My tummy problems got a lot better. In March Haley turned 13.

Time flys so fast. Haley keeps us very busy. Throughout this year; she has played softball, volleyball, is in cheerleading and band. She continues to keep her grades up. In 2012 she will be a freshman; is that possible?!In May Breanna turned 4. It is hard to believe that my youngest is 4. Somedays it makes me sad. Other days I look forward to what is to come in the future.

The end of May Kyra graduated from Pre-K. That means it was time for Kindergarten. That means mommy was sad.

Breanna finished her first year of Pre-K. Breanna and Kyra will be a year apart in school. They do EVERYTHING together. They sleep together, eat together, play together; so we knew that Kyra starting Kindergarten would be hard because that meant they would no longer be at the same school.

In June we were blessed to be able to take the kids to Disney World. My mother went along and if it would not have been for her we would not have been able to go. The trip was not cheap. We had an AMAZING time. All went pretty smooth. Wesley was sick two days while we were there, but with my mother being with us we were still able to do everything we had intended on.

We had a blast... To be continued......

Merry Christmas

2011-12-24T22:33:00.004-06:00

More to come later but for now MERRY CHRISTMAS. We are so blessed and thankful for all the prayers, love, and support.
Merry Christmas!!!

Back and It is ABOUT time..

2011-12-14T12:19:00.002-06:00

Well, where do I begin?! I can not believe it has been almost a year since I blogged. I have so many times wanted to blog and just never get around to it.
I miss it!!
So much has happen. Where do I begin. First I want to say that I am going to start blogging again; that is a promise. I have had many people ask.

I still research Chiari as much as I can. I have reached out to some local people that have Chiari or a child with Chiari. I want to continue to share our journy with Chiari.
Chiari Malformation is never forgotten in our house. Wesley and Kyra live with it everyday.
A quick update... Kyra is doing pretty good. She started Kindergarten this year and is doing very good in school. She still suffers with her headaches; but in a months time she only has three or four bad ones.
Her yearly MRI will be coming up in Feb. or March 2012. My prayer everyday is that she has not gotten worse. But, only God knows and God will take care of us.

Wesley is a totally different story. This past year has been rough to say the least. Doctor after doctor. Medicine after medicine. He has chronic headaches a lot and they make him really sick. When he has one there is not much he can do, but take medicine and sleep it off. In the upcoming week I will share some new information we have learned that may help with the Chiari and these are somethings we are trying.

Throughout everything we are so blessed. In June we went to Disney World; thanks to the help of my mother who also went. Pictures and a post will come soon :)
So much has happen and I could go on and on. And I will in future post. But, I wanted everyone to know that we are alright.

More Medicine

2011-02-10T22:45:00.004-06:00

Well Fred maybe gone but my infection is not. I started to get sick again, I knew right then the UTI was not gone. So I am on another round of medication and feeling like poo. The medication should start working soon. My doctor said that the medication that the ER gave me does not always wipe out UTI's.

Well we got more snow and the kids got two more days out of school. I got one day off of work. And now this weekend it is supose to be in the sixties.
Got to love Texas!!

And we have a new doctor...

2011-02-08T21:25:00.005-06:00

I have been working on getting Kyra into a new neurosurgeon, one that deals with Chiari more then just "here and there". Dr. Swift in Dallas, I have heard from several that he is excellent with Chiari. Call it what you want, but I want the best doctor possible for Kyra.
We have a lot of unanswered questions. Has she gotten worse, being the big question.
I got a call today that the doctor has received everything and I was asked several questions. The doctor has stated that she needs a full work up again this year, with some extra tests that have never been completed on her. She explained that this is going to be a process that is going to take time.
If we have learned one thing with Chiari, it is to have "Patience". From here we move on to paper work and getting information from her regular doctor for insurance purposes. After that she will have a full body MRI. She will be put to sleep for about two hours and they will run the MRI (which will tell us a lot, fingers crossed). After the MRI a Sleep Study will be done. We will stay in the hospital for this.
After all tests are complete we will see doctor and get the results. The results are what is so hard to have patience and wait for.
What we have to do is just pray for the road ahead of us.Will keep everyone updated.

Here are the little girls dressed in their Valentine Day clothes.

Winter Storm 2011

2011-02-04T22:44:00.010-06:00

Speaking to my neighbor today I asked him when the last time was that we saw snow like this in Texas. I knew he would know.
He stated, 1950. The snow continued today. I have never seen anything like it. School has been out for four days. My work has been closed.
Today it was beautiful. So much snow! I have no clue how much, but I can say a whole lot.

Wesley had to go to the doctor after work this morning. He has been in a lot of pain, but was able to get all his medications today.
It ended up being a great day. We all played out in the snow together and then me and Wesley went on a date tonight. Dinner. It was nice. Does not happen a lot.
Here are some pictures from today. The forecast is saying temps higher tomorrow, so I think it will start to melt away. But, next week we are calling for more snow. Crazy!!

Snow Ball Fight!

Come On!! Please play with me.

Do not eat yellow snow!

Hit Me!

Our Baby!

Beautiful Snow Angel

Yummy!!

Last Photo, Breanna has had enough!!

Day # 3

2011-02-03T10:09:00.005-06:00

We live in Texas, right!?!? As far back as I can remember we have not had a ice/snow storm like the one we had Tuesday. We are on day number three of being stuck in this house. The kids have had no school. The roads are frozen solid and we are forecasted for more snow tomorrow. Remember I just had surgery and this week was suppose to be about resting. HA!! No really, I have rested, and have enjoyed just being lazy for a change. My work has actually been closed the last two days, so I was not docked any time.
I am feeling much better. Actually by Tuesday I was doing very well, besides the staples inching like crazy. I get them out today; if the doctor is open, ha.
I can tell a difference. I have had a few times of my tummy still getting upset, but overall I can eat now without getting sick. Praise God!! So hopefully that is the end of my problems.
This is not a good photo, but just a few staples and soreness. I am good :)

Wesley has been a different story. The doctor has been closed and he is out of medicine. But, there is hope in sight today. They are suppose to open. He has really been battling the Chiari headaches.

The kids have been ripping the house apart. I think they are tired of this house.
What do you think?

This picture does not do the playroom justice. We cleaned last night, not for sure why. Ha.

So here we go day number three. Will let you know what Mother Nature does next.

Fred is Gone..

2011-01-29T19:46:00.003-06:00

Fred (AKA) Gall Bladder, is gone. Everything went fine. This is the first surgery I have ever had. Personally I thought I did pretty well. The one thing I was nevous about was getting put to sleep. I have never been put to sleep. The whole thought of a breathing tube being down my throat really scared me, even if I was being told that I would never know.
Well the doctors were right, I never knew. All I remember is moving to the operating table and then I was out. I woke up in recovery and I remember opening my eyes and thinking, "is my gallbladder gone". Ha. Fred was gone and the doctor said everything went great and all my other organs looked fine.
Now I am left with four incisions and soreness. I know with time it will get better. I am taking it really easy.

Gall Bladder

2011-01-27T23:47:00.003-06:00

Fred is coming out tomorrow morning at 9am. Will update as I can. I think I am ready, ha.

Lots of Thinking..

2011-01-23T23:29:00.002-06:00

I have been keeping to myself and just quite here lately. Not even talking to my best friend. I just needed some time.

I have been feeling awful. Friday Fred will be gone and hopefully I will feel better.
But, it has been more then that. I have been doing a lot of crying out to God.
Wesley has had a rough week. Nothing that is not normal with Chiari, but just a rough week.
Kyra has been getting more headaches.
I remember the day that I realized our lives would never be the same. I struggle with what exactly I need to pray for and here lately I have been praying to God that he just give me peace about Chiari. Peace!!!
It is one thing for Wesley to have Chiari, but just to know that Kyra has this path ahead of her and is already having problems. I know God has a plan for us. And, I have just been praying hard that he give me peace. Because I know that all the praying in the world is not going to take Chiari away from Wesley or sweet Kyra.
The new doctor I am trying to get her into will not return my calls. UGH!! Like a good friend said I am getting on the phone tomorrow and are not going to stop until I talk to someone. I mean if the answer is no, fine, but please talk to me.

Well this post sounds down in the dumps, but just wanted everyone to know that we are ok. Do not know how many actually read this, but I know my grandmother does :)
Love You Grandma!!

"ViRuS"

2011-01-17T22:01:00.003-06:00

Ugh.. Over the past two months, Blake has a tummy bug then noone else. Then Kyra had it and noone else. This time Breanna gets it, then Blake. Breanna had it for 48 hours, bless her heart. In the mist of all of this I got sicker and sicker.
Like the comments from my husband, check out this one:

"You need to get well soon. I was reading the "Duties of a Father" handbook and in the chapter on tending to sick children there is no mention of cleaning up puke being the fathers duty. In fact it specifically states in paragraph 3 subsection d that the mother is responsible for all such acts. I am not qualified for these conditions. "
Such a hoot!

I finally decided Sunday night to go to the ER to make sure it was not my gallbladder. Nope I have a really bad UTI. Lovely. Never had one before and gosh are they painful. Finally this afternoon I am feeling a bit better, but still having some fever and my back really hurts.
Enough about sickness, I am tried of talking about it. I feel like thats all I do.
We could really use a healthy bug in our house.

I am so happy for some friends of mine. They have been trying to adopt a child for about six months now, and today they got the call. Baby Girl. Ellie Grace. They will be picking her up on Wednesday. If anyone deserves to be parents it is this couple. They are amazing. And I am so thrilled for them. Happy Tears today all for them!!

Sick Again

2011-01-15T23:17:00.003-06:00

This has not been a good week for many reasons. I feel like all I do is share negative news; All I ask is for a break. Please.
Here is what my sweet husband posted for me on facebook, since I have been feeling a bit in the dumps with somethings that have been going on.

""I care sweetie and yes you are perfect!`Perfect mother to our kids Perfect person to put up with me, and my never ending problems! Perfect person to help all the people out there that are stuck in a rut and going down the wrong path. Yes... there are times that it may seem you are overwhelmed with work, and people with problems are going to take it out on you, GOD put you in this place for a reason to help his people that are on the wrong path get on the right one. When you are down, just remember and reflect on all the good you do. Let it help you find the strength to overcome the bad times/ones. I LOVE YOU sweetie!! Me and the kids are very proud of you! Smile and put the bad behind you!! ;)""

I really appreciated that comment. I am so blessed to have the husband that I do.
I came home Friday having bad gallbladder attacks. And then as soon as I got home Breanna started throwing up.

Over the course of two months each of my children have had this tummy bug at different times. Could they all not just get it at the same time? UGH!! Breanna is a bit better today. Last night was rough for her and me.

I am praying for a break. Just want everyone in my house to be well for a week. All I ask. If that is negative I am sorry. Ok, now that I have vented. Thank You for listening/reading.

Three Steps Forward and Two Steps Back

2011-01-13T21:53:00.006-06:00

Have wanted to blog everyday and it has not happen for the last week. We have had some bumps in the road the past week.

I have been so busy at work. I keep getting case after case. A couple of cases blew up this week. It has taken a toll on me. I am still learning to not take everything personal. I work so hard on helping these people and then for them to blow up at me because they have made a mistake and then just let everything go because they are on drugs or whatever is hard sometimes. They put the blame on someone/anyone other then theirselves. But I remember by telling myself that the positive cases out rule the hard ones. Just been a rough week.

For the past week Wesley's headaches have been back. No clue why. Have not called a doctor yet, just praying it will go away and not get worse.

Having trouble getting Kyra into the doctor I want. Still trying.

My surgery is on the 28th and even though I know it is not a big deal of a surgery, I am still scared. I do not want to be down at all. But thats in Gods hands and I know I have to get it down.

Just some bumps, but we will get through it.
We did get some snow. Yes, in Texas. We usually get lucky about once a year. It was beautiful and the kids had a blast.

Bring on the New Year

2010-12-31T14:21:00.004-06:00

This last year has been full of many days of happiness, sadness, trials, sickness, blessings, new friends, new job and much more.
Whether it is sickness or health, happiness or sadness, God has been near.
It seems that every year I feel closer to God, what a blessing. Not to say I do not struggle, but as 2011 draws near I have many goals and feel positive.

I know that now that 2011 is almost here Kyra has to have her yearly brain check up. I have found a new doctor in Dallas that deals with Chiari. My goal is to get her into this doctor and with open arms embrace what is brought our way. What a blessing it would be if Kyra's brain was healed, but that will not be the case; as I know that is impossible so instead my goal is to be strong and do whatever is needed to help Kyra. I will quit trying to make myself believe that she is not sick.
I plan to become more involved with Chiari research. I hope that in 2011 they become closer to a cure. I want to write more about Chiari and our story. I am realizing how much of a story we have.
I will be strong for Wesley and pray that he has a much better year with his health.

I will take care of myself. Fred, also known as my gallbladder will be coming out on January 28. Wesley will take good care of me. I will feel so much better.

I will become more involved in church. I will not let my faith slip or take my eyes off of God.

I have a lot of plans and goals. One day at a time is really all we can do. We are planning to go to Disney World in June 2011, thanks to my mother helping. I just know this will be a great year.
I wish the best for everyone and a very Happy 2011. Bring it on!!! Check back often.

Thinking Back...

2010-12-28T20:33:00.004-06:00

I have starting watching the show 16 and Pregnant. Me and Haley watch it together. The show breaks my heart, and I am glad Haley watches it because you really see what happens when you get pregnant when you are still a child yourself. I have a special place in my heart for teens that get pregnant. I was once a pregnant teen myself. My first CPS case was a pregnant teen. I enjoyed so much helping her and reaching out to her. She is doing so well and has really matured. I chose to write about this tonight because I just closed her case this morning, she is doing so well. My job just touches my heart, I know I have said it many times but I am so glad God put me there.

Let me tell you a story about myself.
Me and Wesley have been together a long time. Since I was 15. He was my first real boyfriend. He drove me to drivers ed. After being together a few years I found out I pregnant. My brother had just passed away in a car accident, my world was turned upside down. I was still a teen myself and now I am pregnant. We had so much growing up to do. But, from the moment I found out I was pregnant I knew I would do anything I had to for my child.
I had so many plans and at first I felt like my life was over. I was very lucky at the fact that Wesley was so supportive and there for me. My family and his family was also very supportive.
But, I can not explain unless you have been there how hard it is to be a teen and pregnant. Me and Wesley really struggled. But, we always got through it. Haley was born and she was perfect. I could had never prepared myself for what it is like to be a mother. I will never forget the first time I held Haley.
I was so at peace at the fact that she was mine. I went on to finish school and then went on to college. Wesley worked two jobs too make ends meet and help me through college. When I was almost done with college, Wesley started the Police School and we graduated together. May 2005.
I think the experience made me who I am today. Haley knows her "whole story". We have a very open relationship with our children. She knows and understands that we were young and that getting pregnant was not what we had signed up for. But, she also knows that we would not have it any different and that it worked out for us. Not everyone has the same outcome as we did.
I will always have a place in my heart for pregnant teens and the push to help them in anyway I can.

Teen pregnany is 100% preventable with the right education and prevention.

•3 in 10 teen girls in the US will get pregnant at least once before age 20!

•Good relationships don't just happen—they require hard work and practice!

“Therefore, do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

2010-12-26T13:17:00.002-06:00

Goal # 1

I have always been a person that really worries, about everything. Believe it or not, I have actually improved over the years. The biggest thing I plan to try very hard to change is:

#1-People. I am sick and tired, infact it is very tiring.
*Why does that person not like me?
*Why do they act that way to me?
*Why was I not invited to hang out with them?
*Why were me and Wesley not invited to hang out with those couples.
Etc.. I am tired of it. I am tired of asking myself, what is wrong with me/us?
Is it because we have four kids, because Wesley is sick, because we get on people's nerves, I have no clue. I am tired of trying to figure it out.

I know everyone is not going to like me/us. I know it is only human to worry and want to fit in. But, I also know that I can get better about it.

Thats my first goal and I plan to work very hard at it. I am so blessed. I have an amazing husband and four amazing kids. Most of all I know God is in my life, thats all I need. Everything else is a bonus and I hope to accomplish this goal.

The Best Gift...

2010-12-26T11:36:00.011-06:00

The best gift of all
Doesn’t come with a tag,
Isn’t wrapped with a bow,
In a festive gift bag.
It’s not in a box,
Doesn’t come in the mail,
You won’t find it on sale.
‘Cause the best gift of all
Is the gift of God’s son,
Who came one holy night
To each and everyone. (Taken from Park Ave Church of Christ Bulletin)

Warms my heart beyond measure!

We had an amazing Christmas.

Cookies, Milk, and Carrots; one for each reindeer.

Haley hid from the camera because her hair was not fixed. Welcome to the teenage years!

Nap Time!!

Memories I will never forget.

I hope everyone had a very Merry Christmas. Over the next few days I will share some goals I have for myself for 2011. I am going to try very hard to stick with them and complete them. I am excited to see what 2011 will bring.

And The Verdict Is..

2010-12-23T20:52:00.003-06:00

Let me introduce you to Fred. He is my gallbladder that is rotten and barely functioning. Yes, I named him and I found out from the doctor that he is going to have to leave me.
I had another test ran this last week and found out that my problem is "Fred". Ha. I have been referred to a surgeon, thats all I know right now. Fred has really been a pain lately. Sometimes I do not even have to eat and he bothers me. As bad as I do not want to have surgery, I am about ready to tell Fred goodbye. Will keep you posted.

Where has 2010 went? I can not believe tomorrow is Christmas Eve. I am about finished with shopping. I have a few pictures to go have printed tomorrow and I am done. I am now on vacation and are going to enjoy every moment.
The kids are excited of course. Christmas this year is going to be very laided back. We are only going to two places, which means a lot of time at home. I love that! We will also go to the Christmas Eve service at church and I am really looking forward to that. It is AMAZING!
After Christmas I will work a few days and then be off again for New Years. Wesley will have go into work that night at ten. I hope to have a friend over and I am having a "kid" New Years Party. It will be fun!

Merry Merry Christmas to everyone and lets really remember the true meaning of Christmas! Love to all.

As I write tonight...

2010-12-17T22:48:00.003-06:00

I have no voice and one kid throwing up. And, I think who really reads this blog anyway, why do I want to update it. But, I think for me this blog is like a diary for me to get out whats on my mind and on my chest.
On my mind tonight...
I am losing my voice, wait lost it, it is gone. I had the same thing a few months ago. I must be ran down because I never get sick. Some friends gave me advice on what to drink to try and help it, so I am nursing myself.
I am whispering which my kids seem to not be able to hear and now guess what I have a kid throwing up. Twas the winter and germs!!!
Wesley is at work and I am worn out. But, amen he is working!!
Besides the voice and throwing up; today has been a very busy day.

I took off work today. This morning I helped at Blake's school with the AR Store. The students get points for reading and then can spend their points on prizes. Awesome program and a lot of fun.

After that Blake had his Christmas Class Party.

Then to end the day me, my mom, and Haley went to finish Christmas shopping. I am almost completely done. Tons of wrapping to do, but almost done shopping.
We actually have Christmas with my grandmother tomorrow, but with me and Blake sick, we may have to miss. The last thing I want to do is get them sick. But, that makes me sad.
Sunday we have another Christmas Event. Busy times!

The things that warm my heart..

2010-12-15T11:06:00.008-06:00

Is it normal to be such an emotional person, ha.
Kyra and Breanna go to a Pre-K that I LOVE. Waples. Today the 4 year old classes went to a nursing home right by our house to sing to the residents.I could see in the residents eyes, they were so happy. It made their days. What a blessing. Of course I cried. "The things that warm my heart"

One Doctor Down

2010-12-14T18:54:00.002-06:00

You will be proud to know that I finally went to the doctor. I was sent directly for a sonogram, guess what there is no baby. HA. I lay there thinking, what would I do if the lady found a baby, haha. No baby, just organs.
She focused on my gall bladder and basically by what I am being told, the sonogram will only show BIG stones. I had no big stones, so the test was negative. We still know nothing.
The doctor is still leaning towards my gallbladder. She thinks maybe I have what they call gravel; a bunch of little stones. Next step is a function test. I should find out when that will be soon. If that test clears my gall bladder then she wants to run an Upper GI. I am really not in a big hurry, maybe I should be, but I feel that it can wait until after Christmas. I say that because I have felt pretty good today, ha.

I did manage to get my Christmas cards mailed today, well most of them. Guess what, I have a mistake on them. UGH!! Really makes me sad. I guess that is what I get for completing them at midnight. I hope it is the thought that counts. I sent them anyway, what choice did I have?

2011 Already...

2010-12-13T09:58:00.010-06:00

Once again I ask, "where has the time gone". I have been thinking back a lot on 2010. I could say that I had hoped for a better year, but then I realize how very thankful we are. This year has been full of bumps in the road, but through all of that we have had a very blessed year.

On the Chiari front Wesley has continued to not do well. Two more surgeries and four hospitals stays. A infection that would not go away, but we think has finally left. Lots of prayers and tears.
But, so many things to be thankful for. Kyra has stayed fairly well. I got an amazing job that I have always wanted to do. The kids have been healthy and safe. Wesley is still with us. And I know I could go on.
I wonder what 2011 will bring? I know I have many goals I will share later. We have many plans that we hope happen.

Me and Wesley have had a lot of hard times in 2010, but we are now closer. He is an amazing strong man. Everyone says how strong I am. But, my close friends know of all my hard times. There have been many times that I wanted to get in my car and drive as far as I could, change my name, live a new life. I have wanted to leave Wesley many times, thinking I just could not handle it all anymore. God always puts me back on track. I truely believe it is God.
We are so blessed by our family, church family, and friends. So much help, prayers, and thoughts. Thank you to all. Whoever actually reads this blog, ha.

An Update: Wesley has been home for a while now and just went back to work. He is working midnights and we are adjusting. The infection seems to be gone. Headaches are still his enemy, but he is learning to live with them, like a lot of Chiari patients have too. He is a trooper.

I have been having some tummy issues and are actually going to the doctor today. It maybe my gall bladder, will keep you all updated. I am being told there is nothing to getting it removed. I really do put myself on the back burner and I feel that I have no time for this, but after much pain the last few days, I know I need to listen to God and get something done if needed.

The kids are doing well. Pretty much all the sick bugs have stayed out of our house. Kyra is still having headaches off and on. It is time for her yearly Chiari check up and I am not looking forward to it. We are looking at a new doctor, will keep everyone posted on that.

We did manage to get our family photos completed, after having to cancel once. Our neighbor is amazing. Here are a few.

Pictures are always a task, but I am so happy when we get them done.

I hope to be more blog friendly. Stay Tune :)

Thanksgiving Luncheon

2010-11-21T23:12:00.004-06:00

I did go back home on Friday for a few hours. I could not miss the Thanksgiving Luncheon for the little girls at their school.
Here are some photos. I had such a good time. My mom went with us and the food was amazing.

Tomorrow Maybe the Day

2010-11-21T22:50:00.004-06:00

We maybe going home tomorrow. They will send him home with medication and maybe a Pick-Line in his arm to continue medication. We are just ready to be home. The kids miss us bad. We miss home.
I went today and met my good friend Amy half way and picked Haley up she is staying with us tonight. She really wanted to see her dad.
She has such an upbeat attitude, she has brought his spirits up and made him laugh.
There relationship is amazing and I am glad. I want my girls to have that with their dad.
But, anyhow tomorrow maybe the day.
It feels like we have been here for a month. But, you know as we walk the halls, I just praise God that Wesley is still with us. That he just has an infection and he will be alright. Not everyone at this hospital will be.
I know Wesley is always going to have problems, since there is no cure for his disease, and I know Kyra could get worse, but I just have to hold on to my faith. We are nothing without it.
It is hard for Wesley to see that right now, can you blame him. But I have to keep my faith and hope that it helps him in some way.
Trust me and my good friends know, there are days that I really struggle with keeping my faith. It is hard to understand. But, I ask myself how and the world I do what all I do and I keep my strength. That strength is coming from God. It is so amazing!! That brings me back to reality, of course my friends bring me back from time to time too. I am not perfect by any means. I have bad days a lot, but each time this happens, I am amazed at the strength that me and my children have.

Progress

2010-11-21T10:42:00.002-06:00

Well he is on his 5th day. There is "hope" that tomorrow he may get to go home. I am not holding my breathe, because he still has a long ways to go. He has made some progress, but very slow.
This has been one of the worst stays, well it does not beat the 14 day stay at Baylor, but he has been so sick this time.
I have stayed pretty caught up with my job, not for sure how I have done that, but I have.
The kids have done pretty well, it seems to have been a little harder on them this time around. It happened so fast and they have been switched with more then one person this time. But, I feel like when we get back, everything will work itself back out. They are out of school this week, so thats good.
A good friend is actually going to bring Haley down today. She wants to see her dad and stay a while.
We are not for sure what the future holds for Wesley. We really appreciate all the prayers.
I do truely believe that God has a plan, somedays I do not understand why this has to be part of the plan, but we have to hold on to our faith; without it we have nothing.
I ask that our main prayers are for Wesley's faith and of course health. He is starting to get really down. After three years of this can you blame him? Lets pray for him!!

No Change

2010-11-18T22:15:00.002-06:00

The doctors have decided to try IV medication and try to prevent from doing another surgery. So far he is no better. Today has been rough. I am worn out, I some how managed to also work 8 hours today from the hospital. One day at a time. Will see what the doctors say in the morning.
I plan to try and go home to see the kids tomorrow and get a real shower, we will see if it happens.

Back in Hospital

2010-11-17T19:19:00.004-06:00

I think I have used that title before. I remember the last time we were here about a month ago, I really thought it would be for the last time. I remember walking the halls thinking we would never see this hall again. Such a nice hospital and such sweet caring staff.
Why did I really think we would never be back; I just felt like surely with the shunt gone, being treated for his infection, what else could go wrong?
Here we are again!!
Since the last time we got home Wesley was being treated for staff infection. All seemed to be going well at first. After he finished his last round of medication he started getting the bad headaches back again and just felt terrible. Throwing up, etc. Then about a week ago his head started leaking fluid again. He went back to doctor and they started him on more medication. He has continued to get worse. Very sick and more leaking.
He was admitted into the hospital today. Tests are being ran and we do not know much more yet. The doctors are thinking that the infection is back or has never left. They are also going to do a spinal tap to make sure he is not making to much CSF fluid again. The plans right now are to (subject to change, ha) surgery in the morning to cut him back open and clean the infection spot out and then depending on what tests show we will see hopefully exactly what is going on and if something else needs to be done.
I will update as I can.

**God is not the cause of any suffering in this world, Satan is! To blame God for evil is foolish, because it actually causes us to follow the one who IS truly responsible for pain and problems.
Romans 8:18: "For I consider that the sufferings of this present time are not worth being compared with the glory that is about to be revealed ...to us!

Fall My Favorite

2010-10-29T22:57:00.009-05:00

I love Fall my favorite time of year. This week has been so busy for us. Kyra's Pre-K class went to the pumpkin patch this morning. Me and Wesley went along with them. Wesley was able to go and that was a blessing.

At home the kids have been having fun getting ready for Halloween. Here is one little monster that has been running around house.

The little one behind the mask is Kyra. She was even scaring her older sister and brother. Ha

Blake's school had a pumpkin contest. Without cutting it, you could make the pumpkin into anything you wanted too. Your parents could help and hopefully it would bring some bonding time between parents and the child. Well Blake wanted to make his into a Tiger. His schools name is Hyde Park Tigers, so imagine that. Well his mother was the helper and I am not the most creative person, so here is what we as a team came up with.

Does it look more like a rabbit? Ha, thats what everyone at my house thought. Well needless to say, Blake did not win, but we had a great time doing the pumpkin together and thats what matters.

My Little Candy Corns!! :)
We are really enjoying Fall.

As rough as most days are little joys like you see above make everything better. I remember last year saying that no matter how bad things are I am going to do everything I can to make sure the kids still enjoy the Holidays. Well the time is here again, and I find myself thinking the same thought this year.
Wesley went back to the doctor and even though he is still sick and having fever, the doctor stated that it is normal until the infection is all out. The doctor is not going to let him return to work for at least two more weeks. He goes back to the doctor in two weeks.

We are Home

2010-10-24T22:50:00.002-05:00

Wesley got out of the hospital last Thrusday. He ended up having Staff infection and some kind of other infection that he seems to not remember the name. The infection had started spreading into his brain and we caught it early. We were lucky again!! Go back to 2008, this has happen before, but even worse that time. He is on a bunch of different medication. The doctors say rest and time will help. So far it is Sunday and he is not much better. He is better then in the hospital, but not by any means well. I know with time he will get better.
Basically for what ever reason he got an infection around the cut from his last surgery on September 1st. I am not going to spend much time trying to figure out why and the world this happen, it just did. He had a metal plate that was inserted to cover the shunt hole from where it was taken out. The doctor removed the plate and said he would be alright with it. It was covered in infection.
We can only hope this is the end of it.

The kids did really well while we were gone. I love their schools and teachers, it makes me feel so much better to know that they are in good hands.
Blake made A's on his Brenchmark tests, so I told him we would do something special for him. He wanted a Hamster and that is what he got. The new member in our family is Taz :)

This is going to be a busy week for us, all kinds of Halloween events.
I have got to get caught up at work this week too.
Wanted everyone to know we are back home and Wesley is off work and I am making sure he rests and takes his medication.
Thanks so much to everyone for your prayers.

Still in hospital..

2010-10-19T12:16:00.004-05:00

We are still here. They were saying we might get out today, but he had a rough morning so not for sure now. Surgery went well yesterday. The metal plate was taken out and behind it was some infection. They are hoping it is just a minor infection that will just take oral medicine. The doctor has sent the culture off to be tested, that will take days to get back. Now he just has to recover again.
It seems that every time this gets harder. I could complain all day, but I am trying hard to feel blessed and thankful to God.
I know everyone means well do not get me wrong, but it is really hard to have faith right now. Can anyone understand where I am coming from? I know there are people that are so much worse off. Trust me I have walked the halls here and cried, I see people worse. It does not help the fact that I feel like we are in hell!!!
Wesley had just gotten back to work and now he will be off again for a few weeks. This just goes on and goes on. So everyone feel free to try and make me understand how to continue to have faith. I will be very honest, I am really having trouble.
In the midst of this Kyra has been having problems with her neck. She has a bad cough, which we are know makes the Chiari mad, so she has been hurting. Thankfully my mother has been with her. Her year check up is coming up and I am scared to death that it has gotten worse.
Anyhow, I will be ok, I always bounce back and I know God is giving me strength. Just having a hard time right now understanding why we can not get a break.

Back in Hospital

2010-10-17T19:18:00.002-05:00

My heart is breaking for Wesley. He was doing so well.
A couple days ago he started having some blood come out of his last head scar. We did not think alot about it, but it continued to get worse and then clear fluid started coming out. Our local hospital said he needed to come to Dallas ASAP. Everything happen so fast. He has been admitted in Dallas and his neurosurgeon was called. Right now they are thinking he had developed an infection and they plan to go in tomorrow morning and clean it all out. The worse case is going to be that he is making to much CSF fluid again and a shunt would have to go in again. They are running some test tonight to try and rule that out. He is in a lot of pain. I really appreciate everyone prayers. I will update later.
I feel numb, thats all I can say. I feel angry.

Update

2010-10-10T21:57:00.008-05:00

Hi Everyone
I do not keep my promises do I? Time for an update. Life just stays so crazy and I have no excuse, because I should make time for something I love which is blogging, but I just do not make time.

Wesley is doing pretty well. He still has headaches, he always will, but not near as often. I would say on average he now has a BAD one about once a week; use to he was having them daily. His brain has not swelled and fluid has not been building up. The shunt was no longer needed that is clear. He went back to work after three weeks and is doing well. He was switched to night shift and he does not like it at all. I am pretty good about adjusting to whatever we need to, thats what you do when you are a police wife. But, it is hard on me when I know he does not like it. But, not much he can do about it. We are both hoping that with time it will get better.

Kyra on the other hand has been having headaches more often. It is still not to bad, but I am going to start working on getting her into the Austin Dr. for her yearly check up. I know it will take time, so I should probably go ahead and start.
Kyra and Breanna are both going to Pre-K and they really love it. At first I felt upset that I had to put them both in Pre-K. I know thats normal to many, but I had been at home so long, that it was very hard. But, it has worked out great.
I totally love my job. Of course there are days to where I do not know what I am thinking, but for the most part I love it.

I have always felt like I am here to help other people. It has always been my passion. One reason why I obtained a Social Work degree. But, I truely believe God was just waiting for the right moment to put me exactly where I need to be. My heart has been heavy here lately. I want to do more, I am just not for sure what yet. I have been praying about it.
My heart has always been so heavy for people that can not have children. I know some of you know that I was going to be a surrogate mother for a couple, but they backed out because the father got sick. I never tried again. I am not for sure, whether I want to work with aboptions or what. I am even considering getting my masters degree, so I can go a little further with my degree. Maybe into adoptions or something. Like I said just really praying about it. Something feels like it is missing. Well I totally went from an update to blah blah blah about whats on my heart. Sorry, guess I needed to get that out. How about some updated pictures!!

Update- Praise God

2010-09-02T08:26:00.001-05:00

God is so good. The CT Scan looked good. Besides just being really sore, he is doing well. They are sending him home this afternoon, with a promise from me that I will watch him and nurse him :)
There is a low % that his brain could start swelling, but thats a low chance and we know by now what to look for.
Thanks so much for all the prayers. I will continue to update in the days to come.

Surgery is Complete

2010-09-01T19:05:00.005-05:00

Surgery was complete by 11:00am. The shunt was removed and it came out easy. There was concern that it would not because of his venticles, but it came out with out a problem. They did leave part of it in the chest because that would had been another surgery in itself. Cutting his chest open. That should not cause him any problems though.
When the Dr. came out to speak with me he brought the shunt out to us in a bottle, haha. Exactly what Wesley wanted. Here it is!!

My first thoughts were, "thats all it is"!! HAHA.
Here is Wesley before surgery, he was ready.

The plan now is: a Ct-Scan will be ran in the morning to check the fluid and brain swelling. If everything looks good then there is a HIGH chance that he will be able to live without the shunt. There is a small chance that things could go south in the weeks to come but that is a very small chance.
Breanna is really missing her daddy at home. She is a daddy's girl. She cried last night about him leaving and then has had a rough day. She talked to him tonight so I hope that helps.
So as of 7:30 things are going well. He is just very sore. The Dr. did put a metal plate in where the shunt hole was.

To explain a little bit of what the Dr.'s think has happen. Wesley has Chiari Malformation which caused all his problems. He had surgery for that to help the problems, because there is no cure. After the surgery he had a CSF fluid leak (rare complication) he got menigaitis. It went to his brain, and his body started mass producing CSF fluid, which his brain starting swelling. A shunt was put in. Two Years later the shunt is causing even more issues. His body is fighting if off, so the Dr. felt like removing it would be the best plan. They believe the menigaitis was the only reason why he needed the shunt. So here we are. He can live without, he should be a lot better.
Wesley will always have Chiari and will have problems with it, but should not be constant. Hopefully the Chiari never gets bad again and would need another surgery. But, with Chiari you never know until it happens. Does that make some sense? Ugh, so confusing.
Kyra is starting to have some issues with choking, another problem when Chiari starts to get worse. Hopefully thats not the case. Whenever we do her yearly check, we are going to the Austin Dr. with her. Well thats it for now. I will update tomorrow, I have got to try and get some work done. I took the day off :)
Thank you all so much for your prayers.
:)

Surgery Day

2010-08-31T22:20:00.002-05:00

Surgery was moved to 8am on Wednesday. Wait that is just a few hours from now. Yikes!! Will update everyone tomorrow morning. Surgery should take two hours or so. Thanks for everyone's prayers.

Home Again

2010-08-29T23:22:00.002-05:00

Wesley ended up back at home. The good news is he stayed out of the ER. It is now 11:30 and he is doing better. Just a bad day. Hopefully tomorrow is better. I keep telling him and myself, two more days and we trust God and the Dr.'s that relief is in sight.

Sunday at the Bounds Home

2010-08-29T16:44:00.002-05:00

I have so much to get done before surgery. I actually went to work for a few hours today. Wesley is going to be off with no pay, so I am trying to get in as much overtime as I can. I know we will be fine, but I just do not know what expenses will come up with him, so any extra money I can bring in will be a plus.
Kyra laid around most of the morning with a headache. First one she has had in a while. By this afternoon she was better.
Wesley went into work with a bad headache, that is getting worse and now he is throwing up.
Normal day for Wesley- headache, somedays very bad and throwing up. So really just a normal day for Wesley, I do not know whether he will make it at work all night or not. We will see. Two more days. God is in control. I really believe that God would not had brought us this far to let us down.

I am back and happy to be!!!

2010-08-28T22:17:00.007-05:00

I miss blogging so much, the truth is I just can not find the time. As I think everyone knows I am working full time now. I have a case load that consists of about 20 families, so you can imagine. I love my job. Somedays can be hard, but it is rewarding. God knew exactly what he was doing when he put me in this role. It fits me perfectly. I love helping people and of course children.
But, still my number one job is being a mom. I am still going ninty to nothing being a mom. Before I give a much needed update on Wesley, let me share the kids with you.
They are doing very good. Growing so fast. School has started.
Haley is in the 7th grade. She is hoping to play Volleyball. Haley loves the youth group at our church. She spends a lot of time with them.

Blake just had a birthday. We surprised him and had two friends over and we all went bowling. He had a good time. Blake just started the 3rd grade. It just seems impossible. He is playing flag football again this year.

Kyra and Breanna are both going to Pre-K together. Kyra is in the 4 year old class and Breanna is in the three year old class. Their classes are right next to each other. They both really love it. Their teachers really brag on them. I was a bit worried about Breanna since she has never stayed anywhere, but she did just fine.

Breanna Grace

2010-2011 School Year!!

Wesley has kept getting worse and the Dr. (one in Dallas) has been working along with the Dr. in Austin and he has decided to remove his shunt on Wednesday Sept. 1st and see if he can live without it. He feels it it causing more problems then good. The Dr. believes that at one time Wesley did need it, but no longer. So he will be having brain surgery on the 1st. The shunt will be taken out and then he will be monitored for brain swelling. If all goes well, then it will be kept out. I will not even discuss what happens if his brain starts to swell. I will not think about that!! We are praying that this is his last surgery. Our prayer is that the Chiari Surgery holds up and the patch stays in place and he never has to be opened back up. Awww.. How amazing that would be!!
We thank you in advance for your prayers. Keep them coming. You would think the surgeries would get easier, but they do not. Still lots of fear and unknown. I will update after surgery and as the hours go by.

So much more I would love to say about Chiari, but I promise to keep the blog up and start posting more. I miss it so. I do want to say that we have found a top notch children's surgeon that Kyra will start seeing after the 1st of the year. 2011. She has to get checked once a year for now. My prayer is that hers never gets worse. Right now she is doing very well.

2010-07-18T00:11:00.003-05:00

Update..
First I would like to thank Sandi from Texas for telling me about Dr. Kemper. As some know we went to Austin on Friday and saw him. We both really liked him. I am going to try and explain this the best I can. We now have a clearer picture of what all has happen.
In May 2008 Wesley found out that he had Chiari Malformation. Brain surgery was performed in July 2008. The surgery just helps maintain the Chiari, not a cure all. But anyhow, he was better until August 2008. He became very sick. This is when we have now learned that he had a CSF fluid leak through the patch that was put in when he had the brain surgery. Because of this he came down with Meningitis. Because of how swollen his brain was and all the fluid a shunt was put in. And here we are 2010. Three shunt revisions later. Dr. Kemper thinks he may no longer need the shunt. His ventricles are colapsed, meaning he is over shunted. But, we do not know that for sure yet. Dr. Kemper thinks the settings on the shunt are not right. Not enough fluid is coming out, therefore stopping up. Without a full MRI, Dr. Kemper will not know anything for sure. There is also another disease he is testing him for that goes along with Chiari, and the MRI will show that if he has it. The plans are:
A-Dr. Kemper is getting with Wesley's Dr. here to find out exactly what kind of shunt he has, so that it can be reprogrammed if needed.
B-Wesley will be getting a full body MRI here soon.
After A and B are complete Dr. Kemper will be able to provide us with a lot more insight. We are not for sure what will happen next. Of course Wesley would love for the shunt to come out, but that procedure is invasive and a long hospital stay with a chance it will have to go right back in. The positive is Dr. Kemper knows a lot about Chiari and he will be able to give us a lot of knowledge if anything. He said it is very RARE that you have a complication like Wesley did. That gives us hope that Kyra will not be as bad. Or at least not have the rare complication if and when she has surgery. Dr. Kemper also works with a children's neurosurgeon that is top in the US for Chiari. He suggested that we make no decisions on her without seeing that Dr. first.So I can not say what is next, but I can say we got a lot of information and really like Dr. Kemper.
I want to thank all the people that pray for us. I want to thank all my true friends. I got my feelings hurt today. I have been down on myself. I just can not explain how it feels to live like I/we everyday. It is very hard to be positive, but I am trying. I will feel better tomorrow. Thats all I am going to say. I will try to keep the blog more updated for anyone that wants to read it. Thank You all. Lots of love!!

Chiari...my lifelong companion

2010-06-20T14:16:00.003-05:00

I found this poem, written by Cindy Nicholson, which also has Chiari. It is wonderful and tells you exactly how Wesley feels.

Like a thief in the night you stole my life from me
You're always hiding in the dark, come out, where I can see

After years of suffering, I finally know your name...
Now that I know, my life will never be the same,
That fateful day I'll never forget which wasn't too long ago.

You caused my head to explode and my heart was pleading "no"!

Symptoms can be there for years 'till you raise your ugly head,

You even steal my sleep away; I no longer sleep in my bed.
The pains in my head sometimes stay all day.
Please learn to love me and take the pain away.
Sometimes you are patient, just waiting to attack,

Where will the pain be this time? In my head, my neck, or back?

The pain in my back is like a twisting knife,
Take what you want but give me back my life.
You try so hard to visit each day,
Causing me pain, keeping my smile away

Right now, I feel alone, even though I know you're there
Lurking in my head, causing more pain for me to bear.
Life is not about suffering, but you give us pain each day
We, Chiarians together, will fight you all the way.

How can Doctors help us, if they don't know what you do?
We are not hypochondriacs, our problems are you!!

When will all the pain and suffereing end,
Please let me know, so I can be your friend.

Why do you hurt me so bad, can't you learn to love me,
Just take the pain away and set me free.
Chiari, if you could grant me one wish, all I ask of you,
Is that you haven't passed this curse, onto my babies too!!

I feel sad today. It is Fathers Day and Wesley has a terrible headache. My heart breaks for him. Tomorrow I am going to start sending the CT Scan and I want to do a write up of Wesley's whole story to send to new Dr.'s. So that is my next goal. If anyone comes across my blog and knows of a surgeon that specializes in Chiari, shunts, or both, please please let me know. Texas or Oklahoma would be best, we just do not have the money to be traveling the world. I am going to call the one in Austin on Monday and find somemore details. Just feels like there is not much hope, but I have to hold on to everything I can and not give up.

Graduation has come...

2010-06-17T22:08:00.003-05:00

Tomorrow my three month training is over. We actually have a little graduation and I get a certificate. I am just ready to put it past me. It has been a tough. So Monday I am on my own. Just me and my clients. Woo Hoo!! I will let you know how this next chapter goes.

Speaking of tough this week has been a very tough week. Wesley is still not doing well. I am looking into a Dr. in Austin. On Monday I am going to get a copy of his CT Scan and send to New York, just to get his advice. There is no way we can go back and forth to up there; but I want to hear what he has to say. He can maybe give some advice. And, I will continue research and we might try and get into the Austin Dr. unless I find another option. In the meantime pray for us. We need it; everything feels like it is holding on by a thread.

A New Day

2010-06-15T20:05:00.002-05:00

We got home about 12:30am from the ER. Finally after a lot of pain medicine, his headache got under control, somewhat. It never goes away, but it was much better. Today he still does not feel good, but not near as bad. It has been a while since I saw him in the pain he was in last night. So hard to watch, when there is nothing you can do but hurry the nurse up. A CT Scan was done and the ER Dr. did not see anything alarming. I did not figure they would. Basically another bad Chiari/Shunt headache. The good thing is, we got a CT Scan. The New York Dr. would like us to send him a copy, to see if he can shed light on anything. He also gave me the name of a Dr. that is closer, that he highly recommends.
I also got the name of a Dr. in Austin that a sweet lady that reads my blog gave me. I am going to start researching these two Dr.'s. I know that there is no cure for Chiari and I know that just because you have surgery does not mean you are not going to still be in pain. But, I believe in my heart that there is something that can at least help him go a day without feeling sick and having unbearable headaches. I know that his body hates this shunt and trust me we hate it too. But, the Dr.'s are saying at this point he can not live without it, so we have to work with what we have.
I will keep you posted on where the research leads us. I will admit I was mad at God last night, I have since said I was sorry. I am just struggling right now with understanding why good people suffer, why kids get cancer, why some young people die so soon. I am struggling with that right now. But, God is always near me and I all I can do is keep leaning on him.
I already see two things that have came of the last 24 hours. One is; the New York Dr. needed a CT Scan and now we have one. Also, any new Dr. we see will want to see a copy. This is an answered prayer.
Two is; God keeps showing me how blessed I am to have Wesley. There have been times in the last couple months that I wanted to pack my bags and the kids bags and run. Even though none of this is Wesley's fault and he has not asked for this, it is still very hard on me. But, that is selfish of me; can you imagine how Wesley feels? I want our life to go back to how it was two years ago, before this rollercoaster ride.I want Wesley to be able to enjoy being 31, enjoying doing the things he loves to do that he no longer can. And the reality that it will never be that way, is very hard.I do not like to say never, but we know since there is no cure all we can do is work on getting him as comfortable as we can. God has once again reminded me how much I love Wesley and how I would never leave him. How blessed I am to have such an amazing husband. He is such a strong man.
So, today is a new day and we move forward.

A bit of an update on my job. For the ones that do not know I have been going through a three month training school and it has not been easy. I have done a lot of traveling and being up at 5am and not laying down until midnight. It has not been easy, but Friday I graduate. I have made it. As hard as it has been, I love my job. I have not once thought, ugh I do not like this. I really like it. It is such a calling for me. Bascially I help families that are struggling for many different reasons; I help them provide for there children and keep them safe. Our goal is for the children to stay with their parents, for them to better theirselves, and the children not get removed. Working 40 plus hours is not easy as I know many of you know. Even you stay at home moms, you work more then 40 hours. I have been there and done that, and it is not a easy job. But, through it all I do like my job and I do like working. The kids are still being much cared for :)
Wesley has them most of the time and then my mom helps. Thank you Lord for my mom, she is amazing. And now the time I have with them is even more precious.

Feels good to be back to blogging. Thank you all for your continous prayers.

Mad

2010-06-14T22:12:00.002-05:00

This is how I feel right now. I am so angry. Can you imagine if I am so sick of this, how Wesley feels? No, because I can not even imagine how he feels. He is crying his head hurts so bad. All I can do is sit here and type my angry out while the nurses try and get it under control. I do feel angry, I would be lieing if I said I didn't. This just does not seem fair to me. What has he done to deserve this? Why is he not any better? Will have ever get better? Why can we not find a Dr. to help him? I am mad!! I know I will cool off, but I am sick of this.

I am back..

2010-06-06T23:05:00.003-05:00

WOW. It has been two months since I have posted. I am sorry for that. Life has been, well, CRAZY. I have missed blogging and I am back. I will try to get everyone caught up and then we will move forward :)

I started typing this a week ago and have never got to finish. So as I type this tonight, I am sitting in the ER with Wesley.
I had decided to take a break from blogging a few months ago, one because I have been so busy, but I really do miss it. I just kind of fault like all I did was complain and give bad news updates on Wesley.
Over the past few months I have changed my mind somewhat. I have gotten many complaints, that I have not been blogging :) So I am back to blogging and promise to be better about it this time.
So here is the honest truth. Life has been rough for the two months that I have not been blogging, rough. Wesley is not doing well. This disease is just horrible, horrible. Because with this disease you are just in the middle. There is not a cure and there is just not a lot that can be done. There is not a happy medium. He will go through a good time and then he will be right back bad again. Over the past few weeks things have taken a turn for the worse. He is back throwing up and having headaches that he can not handle. We have no clue what to do anymore. Today I spoke with the NY Dr. and he wants to see a CT Scan. Well luckly they are running one tonight in the ER so I can send a copy to him. He also gave us the name of a new Dr. that is closer that he wants him to try and see. He is a neurosurgeon with a lot more experience with Chiari.
I can not even explain unless you have been in our shoes on how we feel. Especially Wesley. I can not even imagine how he feels. I just feel helpless.
I will update throughout the night.

Neurosurgeon Appt.

2010-04-06T21:36:00.005-05:00

Wesley went back for his three month post appt. The Dr. changed his settings on the shunt, which then sent him for an X-Ray. Shunt is in place. The Dr. said nothing else can be done. He can send him to a headache Dr. (keep in mind already been down that road many times), but he said we just watch the shunt and when it stops up we do surgery. Lovely!! Is that really what Wesley wanted to hear? Umm.. NO. But, overall he is doing well. I think he took the news fine, he knew there was nothing else that could be done. So far his headache is worse, so changing the settings may have been a bad thing, time will tell. If anything the Dr. will change it back.
So thats that...

I love my job. I really do. I actually love working. I think I had been at home for so long that I kind of lost who I was. Does that make sense?
When I tell people who I work for I get really bad reactions, but let me say this is a very rewarding job. We help a lot of people. It is not about taking kids away, infact that the LAST resort. I have seen some bad stuff. In a way, I think I lived in a bubble before now. My eyes are now wide open. I have also learned that you can not judge people just because they have made a mistake. God forgives right?? You do not know what these people have been through growing up, you do not know what they have been taught, and you do not know what they are going through. You can not judge, because in most cases you have no clue!
I am tired and I do miss the kids. But, it is working out. My mom is a big help to me. Wesley is doing a great job too.
The kids are good. Here are some updated photos. Enjoy!!

Haley turns 12!! Where has the time went?

Happy Easter

2010-04-04T21:29:00.008-05:00

What an amazing day. What does Easter mean to you?
The meaning of Easter is Jesus Christ's victory over death. His resurrection symbolizes the eternal life that is granted to all who believe in Him. The meaning of Easter also symbolizes the complete verification of all that Jesus preached and taught during His three-year ministry. If He had not risen from the dead, if He had merely died and not been resurrected, He would have been considered just another teacher or Rabbi. However, His resurrection changed all that and gave final and irrefutable proof that He was really the Son of God and that He had conquered death once and for all.
Today, the meaning of Easter, for million of Christians, is that of honoring and recognizing Jesus Christ's resurrection from the dead, and His glorious promises of eternal life for all who believe in Him.
I liked how it was explained at:
http://www.allaboutjesuschrist.org/the-meaning-of-easter-faq.htm
That is what Easter means to me, and what an amazing day.

On Saturday we had a Easter egg hunt at our church. The day was beautiful.

Sunday we went to church service. An amazing service as always. After church we went to my grandmothers house and had lunch.
Happy Easter Everyone!!

Update Update

2010-03-29T12:33:00.002-05:00

I am so busy now days that I barely have time to breathe. My job is going very well. Right now I am doing a lot of training. This involves sometime driving back and forth to Arlington to the regional office for training. I have to leave the house at 6am and get back about 6:30pm. It has been very tough. I graduate from training on June 18th. At this time I get my own cases, I am on my own. I will be a lot more flexible. I think the job is going to be great. Exactly what I have longed for and needed.
With all of this said, it is tough. I miss the kids, and I miss Wesley. I feel like we just all see each other in passing now. Welcome to the real world right!!
Our church just went on a Ladies Retreat. I did not get to go because of work and the kids sports. I was very sad. But as the days go along we are adjusting and things are getting easier.
Kyra has been going through a good streak here lately. Chiari is one strange disease, you just never know what the next day will bring. But praise God she has been doing better. Only God knows how long that will last but for now we are thrilled about that.
Wesley hurts everyday. I do not say this to be negative, it is the truth. You will not hear him say that, infact he wants noone to know. Here I am telling the world. Really how many people read this blog? Not many!! HEHE
Anyhow, he is managing. He goes back to his neurosurgeon next week. We will see what he says.
Aside from working sports have started. If anyone would like the times of games please e-mail me. For security reasons, I do not feel comfortable putting them on the site.
Haley and Kyra play softball and Blake plays baseball. Haley is catching again this year. This is Blake's first year in coach pitch. Kyra thinks she is going to be like big sister. I will get better about updatting :)

Much needed post!!

2010-03-16T11:11:00.009-05:00

Time flys, what else can I say! I have been meaning to post and the time just gets away from me. Let me start with my job. I love it. I am in training until June 18 then I graduate from training and start my own cases. Cps provides us with a lot of training and I get paid while I do it. Does involve driving to Arlington part of the time, but my mileage is paid. I am very tired and our life has changed, but overall I really like it. Once I get my cases I hope and pray I will really be able to touch some lives. I have been going out on cases with another worker, so interesting. I truely believe that there is hope for everyone, but they have to want to be better. God felt that the time was right. I think back on how many times I applied, how ever since I was in college, CPS was my dream. So strange that now is the time. But, I really love it. Thank you for your prayers.
Somedays have been hard just like I knew they would be. I do miss the kids. But, it is not as bad as I had feared. Wesley is doing so well with them. Even when he is sick he somehow manages to take care of them. Me and Wesley have really been struggling. Chiari puts a lot of stress on everything in our life. But, I think my job is really helping more then it is hurting. Amen!!

Baseball and Softball has started. We are back to eatting and living out of the van. Thats what it seems anyway. Good thing I love sports :)
I will post game times when I know them.
Kyra and Breanna both are in gymnatics now.

So if I am not working I am running around with the kids.

Should I bring up Chiari. Ugh. I do not really want to, but I know you all want an update. Kyra's pattern is getting worse. She is having more headaches and some are pretty bad. Her bowel and bladder problems are not any better. The bad news is I found out that both of our insurances will not cover the Oklahoma City Dr. At this point I am doing more research. I had a lady e-mail me about another procedure. I am going to look more into that before I say anything. We feel that the Dr. in Dallas is VERY good and knows what he is talking about. We still at this point do not want to put Kyra through the surgery. We feel it would be harder then what her problems are. I do know that the surgery will have to happen before we had hoped. I have been asking God to help Wesley, give him some peace. He NEVER wants to put her through surgery. This is really hard on him.

After Wesley's last scare, he was over the strep in about a week. It really took a toll on him. He is doing pretty well. He hurts everyday, but I honestly think it is just normal to him now. He knows there is nothing else that can be done. We just watch his shunt and prays in works for a while.

We took the kids to the Arbuckle Zoo this past weekend. It was so much fun.

Such an AWESOME Zoo!!!

I am not going to promise anymore ;) but I am going to TRY to blog more often. I miss it.

Pushing Along..

2010-03-07T13:21:00.002-06:00

I had promised an update and that did not happen. WOW, this working leaves me no time but to sleep and I do not have much time for that either. I am feeling better. The first part of the week I was so tired, but I think my body is getting used to everything. Where do I start..
Wesley. Last Monday night he started feeling bad and continued to get worse. Fever shot up. He had been feeling bad for a few days, but to him thats normal and he did not think anything about it. We ended up in the ER Monday night. The Dr. said he has Strep, gave him a shot in the bottom and sent us home. We were relieved. Everytime we go to the ER, there is a fear that his brain is swelling and bad things will happen. So we were relieved. Throughout the night he did not sleep and just seemed to get worse. That morning I got up, had kids ready and was fixing to leave. The whole time I was getting ready he was coughing. I woke him, because the little girls were staying with him until my mom was coming. In the mist of all this Kyra was sick, so she was stuck at home too. He started to get up and told me he was having trouble breathing. I continued to push on and was fixing to head out the door. I will be honest I had one thing on my mind and that was work. I thought with him just having strep, that he would rest and get better. I was getting into my car and Kyra ran out and yelled 911.
I ran in the house to find Wesley blue and having trouble breathing. He was shaking really bad and then started throwing up. I called 911. I ran and got my neighbors. One of them stayed with us and his wife took the kids to school. When the EMT's got there, they loaded him up quick. They could not get him stable. Could not get an IV in, because he was shaking so much. Could not even get his blood pressure checked. Within about 30 mins, they got him stable enough for them to drive. While all this is going on I call my mom and ask her to come NOW, that I had to call 911. She was there in 10 mins.
Cutting to the end of the story. His blood work and tests showed that he had a bad infection. The thought was that there was a possibly that it had went to his brain. He was sent to Dallas. Another neighbor came and took me home, I packed a bag and left. We were at Zale Lipshy in Dallas by 3:00. By 6:00 we had learned that he just had a bad infection brought on my strep and that it had not affected his brain. Praise God! Such a scary day. Wesley stated that he has never been that scared. He stayed over night to run medicines. Finally yesterday morning (Saturday) he became fever free. He was very sick all week. Thank you all for your prayers. Thank you to my friends and wonderful neighbors.

I worked all week besides Tuesday. I got really lucky, it was a state hoilday, so it did not hurt me to miss. I had a really good first week. I really like it, so far. More on that later and some new pics to share. Have a good week!

Scary Day

2010-03-02T22:21:00.002-06:00

I am so tired, I will try and type more tomorrow. Just want everyone to know that we are ok. Was a very scary morning. Praise God that Wesley just has an infection brought on by strep. It did not go to his brain. His brain is GOOD! He is being kept in the hospital for 24 hours.
My first day of work went really well. I am so excited about it. I got lucky today, it was a state holiday, so I was able to be with Wesley. I am back at work tomorrow, which means I need some rest.
I will update everyone tomorrow. Hopefully Wesley is coming home.
Love to All

I Am Ready

2010-02-26T16:59:00.002-06:00

I went and met my co workers on Thrusday. God is so amazing and I know I say that over and over. But, I hope and pray that you all know that like I do. I asked God to give me some peace about going back to work. I have been really sad. Sad to leave the kids. Sad and worried about Wesley and Kyra getting worse. Many what ifs!! When I met my co workers and saw my office, I feel so much better. Thank You God. Thank you all for your prayers. Keep a watch on my new journey. :)

Much Needed Update

2010-02-22T10:16:00.005-06:00

I am sorry I have not updated. Everyday I try and it has just not been happening. A lot going on at the Bounds house. Let me first give a health update.

Hard for me to give an update on Wesley. I do not want to say he is still not doing well, because I think I can say he is better then he was, but at the same time I can say he is not doing well. Does that make sense? Ugh. It's hard to type because we had hoped he would be better . We now realize he is one of the Chiari Patients that will always live in pain. It may overtime get better. It may get better when the shunt settings are adjusted; only God knows that. But, we are hoping and praying he gets better then he is. But, out of a week now he is only really has a bad day about one day a week. Thats GREAT compared to how he was. So we move on getting used to our new "normal". I am just thanking God that we still have Wesley. I have never shared this because it is hard. When we were in NY, the Dr. told us that another 24 hours, Wesley would had died. Yes, he said that. He said, we were actually so lucky that the infection caused by the fluid leak did not go to his brain. Another 24 hours, he said it would had caused brain damage and then death. God is awesome! He looks over Wesley. So even though he will live in pain, we are just happy he is here.
Kyra has been doing very well. She had a bad day a few days ago and that was the first one in over a week. So, I think it is safe to say she is not getting worse at this point. We can not get her into the Okla. City Dr. right now because of insurance. She is going to be getting on my insurance in three months. At that time we will try and get another opionin. At this point we just take one day at a time. We comfort her if she has a bad day.

We have been very busy. Sports are starting. Haley plays softball. Blake plays baseball. Kyra is also playing this year. Hers is not as big of a deal. They do not start until the end of April and do not play that often. But, three in sports makes for a very busy mommy. But, I love it. I LOVE watching the kids play. Haley finds out Tuesday what team she made and if she gets to play catcher which she is really hoping.
Our carpet is being laid in the bedroom that flooded as I type. We had to take everything out of the bedroom. Can you imagine what my house looks like. Ugh. But, it will be worth it.
Just been busy around here.

I start work in a week. I am very excited, but at the same time I am very sad. I have been crying a lot of tears. I am going to really miss being with the kids.This is going to be the next chapter in our lives. I feel like this job will be perfect for me. I love helping people and I hope I will be able to change a lot of lives. Stay tuned in for our next chapter. I will update as much as I can. Forgive me if I lose tough from time to time.

Please keep praying that Wesley and Kyra stay well and do not get worse. Love to all.

The News Is.....

2010-02-16T16:36:00.003-06:00

Meet the new Family Based Safety Service Worker for Child Protective Services. WOW, thats a mouth full. Basically Preventive Care Worker. I begin March 1st.
Let me explain and say I am sorry to keep everyone waiting. I wanted to MAKE sure everything was in line. "My ducks were in a row". They are; I got the offical word today. I went through three phrases first. Which included a test and onsite interview. So this has been going on for over a month. After I got through the phrases. They had to perform driving history, background, etc.

Many know my degree is in Social Work. Which I obtained in 2005. Since then I have been at home with the kids. I have always dreamed of working for CPS. As many bad things that I have heard, and trust me some people have not been on broad with me. But, through that all, it has always been on my heart. The opportunity came up and I applied. I was sick when I went for the interview. I felt like it went HORRIBLE. I was SHOCK to receive a call the following week.
I really questioned God's timing. I have prayed, I have cried. Honestly I am scared! Not working in so long really worries me. So many thoughts go through my head. But, WE decided that I did not need to let this opportunity pass me by. I would REGRET it, if I did not at least give it a try. With that being said I start in under two weeks.

We can use the PAY and I can use the BENEFITS. Many many worries and what if.
More on everything later. I am worn out today. Valentines Party made up fromn Friday. I have ran errands all day.

Texas-Snow

2010-02-11T22:33:00.009-06:00

WOW!! The news is saying it has not snowed like this in 30 years; in a one days time. It is beautiful. School let out early and is starting late tomorrow. I would not be surprised if its not canceled, we will see.
Kyra is finally a little better today. I did not let her play in the snow. Not that she really cared. If it involves; getting hot, getting cold, or getting dirty. You can COUNT Kyra out. LOVE HER. She is just like me. Mini me! Really!!
Breanna was out long enough for Gabby to knock her down and then she was mad. Haley and Blake had a blast!

Enjoying it while it lasts. Will probably not be here for long.

Right before Christmas 2008 our baby Schnazer Boomer got ran over right in front of our house. The kids saw it. It was horribe. We have tried replacing him and just have not found a dog to work for inside like he did. Well we have a new family member. He looks a lot like Boomer and we named him Boomer #2. He has been wonderful. He is full blood Schnazer. Meet Boomer (#2)!

I must add. I know that some of you maybe losing sleep over what my news is. HAHA. NOT! Anyhow, I promise to share every detail very soon. Some loose ends are being tied up. Hold On!! Be patient :)

Peace when you never expect it!

2010-02-09T23:49:00.003-06:00

Sometimes things in our life happen and you never really think why it happens. Sometimes you think, "what a pain". But, do you ever try and look at the bright side? I can speak for myself and I do not always look at the bright side. But, I can say I try.
Kyra has been sick. I thought maybe she had strep throat. All the normal signs of strep. I can usually look at their throats and tell if it is strep. I just could not see in hers. So I was weighing between, do I take her to the Dr. or not. Could be strep, could just be a cold. After four kids, I know that if she does not have strep then it just has to run its course.
After four kids I have went to the Dr. MANY times for there to really be nothing wrong. A wasted co-pay and wasted time is what it fault like.
Today felt like wasted money and time. Kyra just has a viral infection. Probably just a bad cold and it has to run its course.
As I was driving home I thought, "Kristy, look at the positive of this visit". God is amazing. God gave me some peace today. I called one of my friends as soon as I figured it out. HEHE
My peace:
When the Dr. walked in our room he says, "Hello. Well, I got the progress report from Kyra's neurosurgeon and I see he wants to do surgery". I said, "Yes he wants to, but we are not going to". "Not at this point anyway". Dr. looks at me and says, "really". So I explain. I felt a lump in my throat. What if he thinks like the surgeon; did we make the wrong decision?
After I explain, he smiles and says, "Kristy, I think you made the right decision".
He explains. Kyra is so young. Yes, her pains cause problems, but they can be maintained and have treatment with medicine. She is not having any BAD signs yet. Which would be passing out, losing vision, etc. I would wait 6 months to a year and she how she is then. Get another MRI in six months and go from there. He goes on to say that he believes the surgeon is excellent. He says when you are a brain surgeon, its like changing a flat tire. No BIG deal. But, to you, he says, it is a big deal. He thinks another opionin is not out of the question. But, for now he says to just keep a close eye on her.
Do you see? I thanked God. I needed to hear that. I needed to hear a man (Kyra's Dr.) that I have known my whole life tell me that not doing surgery at this point is ok. That he agrees with me. I am not questioning myself near as much now.
She is on medicine for her bowels that she will pretty much have to live on. That may get better after surgery, but no promise. Tylenol for headaches at this point.
I want you to think hard of what God has done for you in the last week?

Prayer Request:
Wesley's mother is back in the hospital. Another infection, the Dr.'s think. Tests are being ran. She is not going well. Please include her in your prayers. She has had such a rough time and her body is just not healing like it should be. Thank You

Blogger Award

2010-02-06T22:42:00.002-06:00

A sweet friend of mine gave me a blogger award. My first award by the way! YAY

I need to tell you all 10 things about myself that you may not know.

1. I LOVE to eat chips with melted cheese, and some hot sauce on the top. Yummy. It is a problem, but a problem that I am not ready to stop. It is my treat, I think I deserve it. But my hips and butt probably do not agree. *sigh*

2. My brother died in a car accident when he was 13. That was 12 years ago. I miss him so much.

3. Me and Wesley met in highschool. I was 15 and he was 17. He used to drive me to drivers ed. We have been together ever since. I LOVE him!!

4. I always wanted a lot of children. God granted my wish. :)

5. My favorite drink nowdays is Sweet Ice Tea. Sonic is the best!

6. I have a Bachlors Degree in Social Work. Looks like I was be using it soon. (More to come later) ;)

7. My favorite store is Tar-get.

8. I LOVE to shop. Especially for the little girls. Buying for Haley is not fun anymore; she has to pick everything out herself.

9. I use coupons on everything I can. I save a lot of money doing it too.

10. I am hooked on Young and the Restless. I have taped it for years. I watch them at night when the kids are sleeping. I feel like the cast is my family. *crazy* LOL

There is a little about me. Check back in soon. I have some news. And no I am not pregnant. Everyons seems to think that is always going to be my news. I hate to upset anyone, but no more babies for us. Not coming out of me anyway :)

Chiari in Children

2010-02-04T21:38:00.003-06:00

Chiari I Malformation is a congenital malformation of the skull characterized by a small posterior cranial fossa and impaired spinal fluid flow. The result is a series of chronic and often debilitating symptoms including, but not limited to: headaches, ocular symptoms, otoneurologic symptoms such as vertigo and imbalance, cranial nerve and brain stem disturbances, bowel and or bladder dysfunction and other nonspecific systemic symptoms. This disease and its complications are characterized by remissions and exacerbations, even after surgical repair. This condition is life long and can affect every aspect of one's life.
http://www.chiariansunite.org/

I found this information tonight. I am thinking that Kyra's bladder and bowel issues are Chiari Related. My goal tomorrow is to start the process of getting her into the Dr. in Oklahoma City.

Maybe we have made the wrong decision. Maybe we should do surgery. I do not know. I am putting my faith in God. I am so sad that she is having bladder, bowel, and headaches. But, is it really bad enough to put her through brain surgery? Maybe a second opionin would help.

The Days Move On

2010-02-04T10:08:00.003-06:00

I have been trying to do a lot of alone time, thinking, and praying.
Kyra has been doing pretty well this week. She is having bowel and bladder problems. We are not for sure if this is Chiari related or something else. I feel like I still have so many unanswered questions and this is not because I did not ask. It is because the Dr. did not fully answer. I really want to try a Dr. in Okla City. I can not help but worry for her future holds. Thats where God comes in. I have to leave that to him. For the time being, I feel like we are doing the right thing. I have questioned myself for sure. We have a whole new "normal". Everyday is something new. Wesley is hurting or Kyra is hurting. Or both! It breaks my heart: Blake and Haley will say. "If daddy and Kyra feel good can we do this today". Our life has changed before our eyes.
I think how awesome it would be if a cure could be found. Some sort of magic that would make them both well and no need for brain surgery. I think how I could make that happen. That thought is crazy. I can not take on the world, but I can try in someway. I am working on that. Do not feel like I am very far, but I am trying.

I have never heard back from my job opportunity. Not surprised at all. It was not meant to be. It would had been 40 plus hours and I think God knows what I need to be doing. I am on the sub list, so I will continue to do some subbing and see what happens.

Update on Prayer List:
**My aunt husband Bobby. He is out of the hospital. He does have brain cancer and will be starting treatments. He has a long road and really needs our prayers.
**Wesley's aunts mother, Choweta. She had her neck and back surgery and now is in a different hospital doing rehab. She needs our prayers as well. She has a very long road.

New Prayers:
**Wesley's mother is back in the hospital. Now the Dr.'s think she has a steph infection. She has had such a rough road and many setbacks, please say a prayer for her.
**I have a dear friend, Christin that is pregnant. She is having some heart issues and is on complete bedrest. She goes to the heart Dr. on Friday. She needs our prayers. She has other children and this is very hard on her.

Another Stressful Day!!

2010-02-01T21:40:00.006-06:00

Ready for her MRI

Kyra is such a trooper. She smiled the whole time. Even when they were putting her to sleep. Ugh. Brings tears to my eyes when they put her to sleep. She did fine. She was pretty drunk afterwards. It was so funny. She was smiling and laughing like a drunk person.
After the MRI we went to the surgeon. The good news is the MRI showed nothing new. Nothing bad that we did not already know. She has Chiari and thats that. He wants to do surgery. She will most likely (very high chance), she will continue getting worse. He said we can just think about it and watch her and go from there. We have a year and a half before she starts school, if we wanted to do it before then. Right now she is just having head and neck aches a few times a week. If it gets worse we know what we need to do.
Of course we did not mark surgery down. We left and talked. We feel that we are going to wait on surgery for now. We also are thinking of getting a second opionin in Oklahoma City. I will continue with my journal and watch her very closely.

We are ok. It is just hard. I am sad that she has to live with this and that she could get worse or she could stay the same. The unknown is hard. It is upsetting that there is no cure and that I know she will have to have surgery someday. It is hard that Wesley is still sick. It is hard that he will never be the same. And it is hard that they both have to live with this disease.

God is amazing though. I will never give up. God is with us. I have been praying for comfort in our decision and I feel like I have it. I know what we need to do shall she get worse. I know what we need to do to provide her comfort. One day at a time!!

So Loved...

2010-01-31T23:36:00.003-06:00

I have said many times how much I LOVE my church. They have done so much for us. They are the most giving people I have ever seen.
Growing up I did not have a church family. The family I was VERY close to I lost. My brother got killed and then my grandparents died. We barely ever went to church. I always prayed and I always knew God, but not like I do now. The amazing thing is I always prayed. I prayed for others and I prayed many times for myself.
I now have something I have never had. I feel like I have so many people that love me, Wesley, and our children. It is an amazing feeling.
The most important thing is; God is amazing and I know that. I know that God loves me so much. He is working in my life everyday.
Today our church family collected money to help with our financial medical burden. I am still beyond words at how giving my brothers and sisters in Christ are. They collected more then I could had ever dreamed. This money is going to help us so much.
We were in bad shape. I am so thankful and I feel so loved.

Kyra and Wesley both had a rough day today. Kyra's MRI is tomorrow. Kyra is so beautiful, so loving, it rips at my heart to see her in pain. I am praying that we get good results tomorrow. I am praying that God guides our decisions and gives us comfort.
I truely believe this is God working. There is a reason Kyra's Chiari was found early. She is going to be treated and healed. She will not have to suffer like Wesley. Wesley is going to have to suffer the rest of her life. Hopefully he gets somewhat better, but the reality is, he will never be totally healthly. Kyra has her whole life ahead of her, when we do perform surgery and we know we will have too; this is going to give her a new chance. God prepared us through Wesley. Wesley is so thankful that it has worked out like it had. We are so educated now and do not feel like we are going into this blind. Even though we want the very best for Kyra and do not want her to have brain surgery, we know God is in control and time will tell.
Will update tomorrow. Goodnight.

Another Weekend Gone..

2010-01-30T22:21:00.003-06:00

It amazes me how the days fly by. I will start with saying I am getting closer and closer to having a teenager. Haley will be 12 in a little over a month, she already acts like she is 16 and many think she looks a lot older then she is. Scary and probably not a good thing. She is at the stage that I had hoped would not happen. "Mom is no longer cool".
Friday night she had a friend spend the night. On Saturday we had a little shopping that needed to be done, so me, Haley, and her friend went. In my mind, I was thinking this will be fun. In their mind, "woo hoo, we have a ride to the store and then we can run away from her and pretend that we are grown". While I was at one end of the store, they were at the other looking. When we all met up to leave, I had put a Bra in the cart for me. It was light blue and cream with very small polka dots. Haley says, "Oh my gosh Mom; mothers do not where bra that have polka dots on them" Can we say, "What not to wear".
The day has came, "Mom is no longer cool". *sigh* Thats ok, she loves me. :)

I am so tired tonight, church is going to come early.
I ask that you please pray that we get good results on Kyra, Monday. Please pray that the Lord guides us in the decision that will have to be made. Kyra felt bad today and it just breaks my heart when she can not play. I do not want her to deal with this her whole life, I do not want her to get worse. I also do not want to put her through brain surgery. Please say a prayer.
Love to All :)

Kyra's MRI

2010-01-29T14:51:00.003-06:00

Her Spine MRI will be Monday Feb. 1st. We will be seeing the surgeon later that day. At that time we will make a decision depending on the MRI. Please pray the MRI comes back fine. At this point we do not want to put her through surgery unless we have too.
I will update more later.

PUSH

2010-01-27T09:27:00.002-06:00

I can not take credit for this. A friend posted it on facebook, but I like it.
PUSH
P- Pray
U- Until
S- Something
H- Happens

I like this. You must always keep praying. God hears us. What we pray for might now always happen or when it does it will be in God's timing. But, we must pray.
"God's timing is not always great, but we MUST trust in him"

Tomorrow I am entering into a career opportunity, not sure where it will lead. I feel the time is not great. If it is meant to happen it will, but I feel I need to take this chance and see. For me and our family.

I am feeling a little better today. Still hurts to swollow. Maybe I am losing some weight :)

Back in Action

2010-01-26T14:40:00.004-06:00

Been away from my blog. One thing after another.
I have not had strep throat since I was a kid, well guess what I have strep throat. No one else has had it so far. It about kicked my butt. I still do not feel good. I went to the Dr. this morning and got some medicine.
Wesley took off tonight to help me, not to mention he has only had two hours of sleep. I am telling you, when the MOM is sick everything falls apart.
I think by tomorrow, I will be so much better.
Other then that it has been business as usual around here. Kyra did not feel well on Sunday. Wesley did not feel well on Sunday. He felt a bit better on Monday.
As you can see Business as Usual!
Thats all I have for now. :)

Awww.. The Weekend.

2010-01-23T09:53:00.003-06:00

We slept in today and it was nice. I am very lucky, usually my kids sleep until 8:00, but even then they just get up and turn cartoons on and let me sleep. Well, until they are hungry.
Remember a few weeks ago, I showed me painting the hallway. Guess what, it is still not done. Ha! I am getting it done today, promise. Maybe I should not promise, but it is on my to do list. First, I have a double baby shower that I am helping with. How exciting!!

The last few days have been hard and that would be why you have not seen much of a post. Me and Wesley (especially Wesley), have really taken the news about Kyra hard. I am feeling a lot better. I see God working everyday. The insurance is working on the MRI, so they say. Ugh. I should hear something on Monday. I seem to be in no hurry, even though I should be. In a hidden way, I do not want to know, but I know we have too. She is doing pretty well. A few issues, but nothing really bad.
Wesley was sick yesterday. We know there will be days like that. :(

Update on prayer list:
* Bobby (my aunts husband) is still in ICU, but doing as well as expected. The tumor was removed, and the cancer had not spread. PRAISE GOD!! Now, time will tell.
* Choweta (Wesley's aunts mother), had her neck surgery and her back surgery is next week. She is doing as well as expected with everything she has been through. PRAISE GOD!
* Wesley's mother is doing much better. She really scared us. I talked to her yesterday and she sounded so good.
God is amazing. Hearing all the good news has really made me feel better. It is so easy to really get down when so many around you are suffering.
Thank you for your prayers.

My career door is still open and I will know more soon. I feel like this may not be the best time, but God is in control if that. Last night, I was thinking. "God, this is not really a good time, but I have been telling you, that I am putting it in your hands and what happens will happen". Well, your hands are open and I am moving forward. Time will tell.
Everyone have a great Saturday.

We are Ok

2010-01-20T22:22:00.004-06:00

I feel better today. Actually I really think I took everything better then I had feared. I want to "heal" Kyra so bad. I would take Chiari anyday, if that meant none of my children would have it. Wesley would take another brain surgery, if that meant the children would not have it. Only God can heal.
Two years ago our life seemed perfect. It is amazing what can happen in a course of two years. I would had never imagined that we would go through a trial like this. Really, through all the bad I see God working in our life everyday.
Does this mean I am not sad, NO; I am very sad. I have cried and cried. Just looking at Kyra, I cry. It breaks my heart. I do not want to put her through surgery. NO, I do not. If she has the fluid on her spine, my heart will break. Because then we have no option. I am not for sure we have much of an option anyway. But, right now I want to keep Kyra just like she is. With that being said, I do not know what will happen.
We are waiting on insurance, we should hear tomorrow when the MRI of her spine will be. I pray so hard that there is no fluid on her spine, because then at least we have options.

I do ask that you say a prayer for Wesley. He is not taking this well. He is scared to death that she will have a complication like he did. He does not want to put her through surgery. It is breaking his heart. Right now, we can not even talk without shedding tears.

Kyra had a good day! Here are two of my cuties.

Sweet Kyra

2010-01-19T17:55:00.001-06:00

What a long day and Kyra was such a trooper. We did not get the news we wanted. The Dr. says she needs surgery. Her Chiari is actually worse then we thought. Her CSF fluid is starting to get blocked. It was moderate. There are signs that she may be collecting fluid on her spine. She will be having a MRI done of her spine very soon. If she has fluid on her spine, there is nothing to consider she has to have surgery ASAP. If there is no fluid, then the decision is up in the air. She will only get worse with time. The Dr. already wants it on the books, we are thinking and praying; also waiting on the next MRI. Wesley does not want to believe this, he is so scared that she will end up like him. We are very saddened. We will know more after the next MRI. My heart just breaks.

She was such a trooper today. So happy! She has no clue whats going on.

Prayer Requests

2010-01-18T15:01:00.002-06:00

Thank you for lifting Choweta and Bobby up in your prayers.
Choweta had her neck surgery this morning and it went well. She has one more surgery to go and a long recovery.

Bobby has brain cancer. At this time we do not know if it has spread. The tumor is very big. We do not know what the next step is. He needs prayers from all over. Life him up.
His wife (my aunt), Bev is taking this very hard. Right now he is in ICU at Baylor. I can say I know what she is going through right now, but really I do not. This is so much worse then anyone should ever have to endure.
My heart is so heavy. I want to do something to help them, but feel helpless. I remember when Wesley was in the ICU. I slept on a table and chair surround by others doing the same thing. It was such a depressing place. I have never felt so alone and sad. I only got to see him during certain times and ever time I had I was in there. He did not know where he was, he was so sick. When I would go in he would open his eyes; as if he could smell my scent or he just knew I was there. I really believe thats what got me through, besides God. When the Dr. told me, 24 more hours and he would had died; I wondered why he told me that. But, right then and there I made an agreement with God and myself that I was going to be strong and I was not giving up.
So,my heart breaks for my aunt. Please remember them in your prayers.
Love you all!

The Truth

2010-01-17T22:26:00.001-06:00

This explains Chiari to a Tee. Wesley is one of the unlucky ones. This was taken from:
http://www.chiariansunite.org/apps/photos/

Some of us sport hardware (wheelchairs, braces, etc) but most of us don’t. We look like everyone else. This is what they call an invisible disability – There is no outward sign saying we are in pain.

Chiari pain is often chronic, and for some of us it is acute chronic pain. There is no magic pill to take to make the pain go away, yet we trudge forward each day choosing to smile and laugh even though we want to scream out in pain. Over time, we learn to go forward as life doesn’t stop even when we wish it would for a moment. We make choices every day of what we can and cannot do. Sometimes, our choice is to do something we know we will pay for dearly later … but we do it anyway just for the experience of enjoyment, if only for a short time.

Some Chiarians are lucky enough that surgery works to eliminate the pain (very small percentage) … For most of us, pain is reduced to a more tolerable level … While others find no relief at all. Doctors are too fearful of the "prescription abuse" stigma, so few of us truly find any relief. We are stuck in a world full of pain and frustration with no end in sight … and yet in the photos below you will see us SMILE!

So the next time you see one of us, please understand the energy it takes to smile, laugh, and PRETEND life is normal, when in fact, most of us want to curl up in a bed and cry!

Comments

2010-01-17T19:43:00.008-06:00

I appreciate everyone's comments, infact I love getting them. I love leaving comments too; on other blogs. I was really bothered by a comment today. I am not for sure who it was from and I do not care.
I was told to be Positive. Let me say that I feel like I have done a pretty darn good job of being positive through the past two years. I was also told that there is LIFE after Chiari and that it can be FIXED. In most cases YES, it can be fixed. But that does not mean that your symptoms are gone.Infact FIXED, means patching your brain back up, which helps deal with the symptoms. There are over 80 symptoms that can come with Chiari. There is no CURE. In some cases like my husband, he will always live with Chiari problems. Yes, there is LIFE after Chiari. I have always said that things could always be worse.
I hope whoever you are that your Chiari was FIXED and that you are 100% without any lasting symptoms. My husband is not and we were told by one of the number one surgeons in the US that he will never be.He is also dependent on a shunt, thanks to Chiari. That is far from not being positive. That is reality. The POSITIVE in me, knows that we will be fine. My husband makes the best out of everyday. He is a trooper and I am so proud of him. We thank GOD everyday.
Off that soap box.

Things are a little touchy tonight. My heart is very heavy. My aunts husband, Bobby Gunn just found out that he has a massive brain tumor. We now know it is bleeding. He is being transported to a hospital in the Dallas area. Thats all we know right now. Please lift him up in prayer.

I had posted a few days ago about Wesley's aunt, her mother (Choweta), that was in the car accident. She is having surgery tomorrow on her neck. She seems to be improving a little everyday. She still has a long road ahead of her.

Before Wesley got sick I never realized what power there is in prayer. I know from personal experience that there is great POWER in prayer. Please lift Bobby up in prayer and please continue to pray for Choweta.
My prayers have become very long. There are so many suffering. I lift each and everyone up. Because I know that PRAYER works.

Tuesday

2010-01-16T22:20:00.003-06:00

I remember a month ago thinking Jan. 19th would never get here. Well, it is almost here and the time has flown by. I have been so ready to go and find out exactly what we are looking at and what everything means. But, now that the time is here, I am not sure that I even want to know now. Does that make sense? We know the reality, we have to find out. There is a huge chance that we get good news, but there is that part of me that is so scared to get bad news or news that I am not ready to hear.
Look what Kyra made tonight. She has learned to write her name. She is getting really good at it and she loves to draw.

I think I have about waited as long as I can. I need to see an oral surgeon to get my wisdom teeth removed. Really, I just have no time to spend on me or money. And, the thought of me being down scares me. But, my teeth are really hurting. That is on my to do list this week. An appt. to see what needs to be done. Or I should say, how much will it set us back, I already know what they will do.

Me and Wesley were going to go out Friday evening and eat. Have a much needed date. Friday was not a good day. He was sick with a bad headache, worse since surgery. But, today he was better. So we did get out and have a date. Thank You Mom for watching the kids and thank you Haley for helping.

Love My Children

2010-01-14T21:40:00.009-06:00

I have been counting my blessings. There seems to be so many right now that are sick, and the horrible earthquake in Haiti. Breaks my heart. Everything. Makes us really realize how precious life is and makes me realize how blessed I am.
I would like to share how you can help with the efforts in Haiti.

www.Compassion.com

Compassion is a group I am researching and learning more about. I want to become more involved with compassion.
Compassion International exists as a Christian child advocacy ministry that releases children from spiritual, economic, social and physical poverty and enables them to become responsible, fulfilled Christian adults.
Founded by the Rev. Everett Swanson in 1952, Compassion began providing Korean War orphans with food, shelter, education and health care, as well as Christian training.
Today, Compassion helps more than 1 million children in 25 countries

The Carpet is Gone

2010-01-12T17:57:00.006-06:00

The carpet is gone, well half of it. Our bedroom is just lovely. NOT. The insurance man is coming tomorrow. I am afaird the damage will not out weight the deductible, but it is worth a try. If anything we are living with half concrete until we can afford to get new carpet in that room. Here is half of it.

My sweet Kyra has had a hard day today. She has had a headache. She keeps telling me she is going to throw up but she never does. I almost wonder if she is sick to her tummy and thats her way of explaining how it feels. Know what I mean? She has off and on just been laying around today. She also has a black eye, that we have no clue how she got. Maybe breanna hit her, hehe. I do not know. It is not totally black. Just some under her eye.

I am asking all my prayers warriors to say a prayer tonight; Wesley aunt (her mother), Choweta Kimball was in a car accident and was carelifted to Parkland. She had her grandchildren with her that she is in the process of adopting. They were not severly hurt, but Choweta really needs prayers. She is looking at a very long recovery. Please pray for Wesley's aunt Charla, uncle Mike, and cousin Chelesa as they care for the children and go back and forth to the hospital. They have such strong faith, I know God will get them all through this time.

I do not have anything to report on my career door that opened. It seems everytime I think I may get to go back to work, we have a bad day and then I wonder how and the world do I think I will work. But, money does not grow on trees. All I can continue to do is pray. We will see.

Doors Open and Doors Close

2010-01-11T22:22:00.002-06:00

God is amazing. You never know when God will open a door or when one will close. Today as door has open for me. Thats all I can say right now. But, I ask that you say a prayer for me. If this door is meant to close it will. If it is meant to stay open it will. I just want to make up my mind about my career and this door will help. :)

So, our bedroom was flooded. I was not going to call the insurance company, because I figured the deductible would out way the damage. Well, maybe I have changed my mind. It ruined the carpet. The smell is so bad. I am sleeping with Haley tonight :)
In the morning I am calling the insurance company. Ugh.. We will see. Another thing to mess with.

Wesley is back at work on light duy. This was his second night. He is doing pretty well. Are his headaches gone? NO. We think the pressure settings need to be changed. But, right now it is not bad enough to call the Dr. So he plans to wait the three months. Basically, give it more time. A week from Kyra's appt. So ready to KNOW. I just want to know what we are looking at . Good or bad.

Mornings

2010-01-11T10:19:00.002-06:00

Am I the only one that has a rough time in the mornings? Ugh.. I am not a morning person, either are half my children. The combination does not mix. It never fails that we forget something and then that wears on me all day. I just can not get it together in the mornings, no matter what I do. I can not imagine when I start working, how it will be. HAHA. Really not funny!!

Productive Saturday

2010-01-09T22:25:00.005-06:00

My plans today were to have a very productive Saturday. At the end of the day I did. But, the day started with a pipe that froze and water flooded our bedroom. Happening about 9am and at 10:30pm we are still getting water up. Fun!! It has been happening to a lot of people. It is just so COLD. It could have flooded the whole house, so I should not complain.
I decided last night that I going to start a painting project. My plans were to repaint the hallway and redo my pictures and do some different decorating. It took about four hours and Haley helping me, but we got it painted. Not near being finished, with my decorating, but when I am you will see pictures.

Even though the day started rough, I ended up getting a lot done. YAY me.

Wesley has had a pretty good day today. If he just start getting sleep at night, I think he will feel even better. One day at a time! Right?
Kyra felt bad this morning, but got better as the day went along.

I need you all to say a prayer for me. I have really been asking God to lead me in the first direction. I need to start working bad. You all know from previous posts that I have really been struggling with what direction to go with. Teaching, or Social Work. Or any job I can get.
A job came up that I have applied for. I am not positive that I want it. I need God to help me. It is good money, but will be more hours and stress then I am really wanting. My finger prints should be back this week and I can start subbing. I just do not know how much work it will bring. Or income! Just not for sure what I need to be doing. We will see. All I do is pray and see what happens next.

So Cold

2010-01-08T22:04:00.002-06:00

I wonder the last time it was this cold in Texas. It has to be some kind of record. Wind Chill this morning was -2. I am not liking it at all. It is such a task to bundle all the kids up to get out of the house. Such a pain. Come on, Spring!!
It seems that all I want to do is sleep. I stay cold, I can not get warm. I have not been able to get motivated this week at all.

Wesley is doing a little better. Still having headaches, but they seem to be maybe getting better. So maybe it is just taking time for his body to get used to it. Fingers still crossed.
Kyra had a head and neck ache yesterday. First one she has had in a while. The 19th is getting closer.

I have received several e-mails of people with Chiari. I am so glad. We can all learn from each other. I promise to get caught up on e-mails tomorrow. Please keep passing our blog and please do keep in touch with me. I have been praying for many of you. I have some ideals that I am sorting through. I have so much concerning Chiari that I want to do, just not for sure how to do it all yet.

The Day Marches On!

2010-01-06T22:04:00.002-06:00

Wesley stayed out of the ER. YAY for him. The last 24 hours he has been sick. Headache, throwing up, the whole nine yards. I called the Dr. today. He says it will take a few weeks for his body to get adjusted to the new shunt. I sure hope he is right and this is not a sign of things to come. All we can do is take one day at a time. I feel a little better today. Just been pretty emotional and I have been very tired. This weather is not helping either.

Me and the kids got out and went to church tonight. That felt good. I am so blessed by our church. I just LOVE all the members and I LOVE going.

Tonight when we got home the little girls took a bath and got their PJ's on. Breanna had some little house shoes on. Well after getting them to bed, Haley went into her room to find that someone had gotten into her clarinet case and threw everything around. Haley comes to tell me and says, "I think I know who did this, I found these little house shoes that someone left as evidence". It was so CUTE. I just laughed. Breanna thought she got by with it, but did not think about the fact that she left evidence behind. HEHE. Everything was picked up and at least she did not break anything.

I have more I would like to post, but my eyes are telling me to hit the hay. Come back tomorrow for more :) Goodnight!!

A Good Cry

2010-01-05T23:16:00.006-06:00

Does that make anyone feel better? You know what, I think I can barely cry anymore. Is that possible? I am going to be honest, I told God tonight that I am not for sure what to even say anymore.
Wesley has been doing pretty well. Just a few minor headaches. The thing with Chiari is, you can be fine one min. and sicker then a dog the next. Tonight he started getting a "bad" headache again and feels like throwing up. He has taken a lot of medicine so far nothing. We are just hoping we stay out of the ER tonight. Who knows what has caused this. Did he do to much? Is it the shunt? Or is it just a Chiari headache that we know he will get from time to time? Ugh.. Thats what is hard.We feel like we have tried everything. I am sure there are things we have not tried, but we feel like our heads are spinning. What have we done? What have we not done? It all mixes together.
I can not even explain the stress this brings to the table. As he put it tonight, "he sits in his chair and wants to spend time with his wife and can not even move out of the chair because he hurts so bad".
I feel like it is just a Chiari headache and we know he will have those from time to time.Wesley will be ok, I know that. But, I guess it boils down to the fact that we are just sick and tired of him having bad nights.

I had someone ask how I am able to blog how I feel for the world to see. This is why. I am not going to pretend that our life is peaches and cream. This is real. This is what a blog is for. It is like a diary. I am not a fake person and I am not going to pretend that nothing is wrong. Wesley does enough of that for both of us. I also want people to know that it is normal to feel up and down. I do know that I am normal. HEHE. Tomorrow I will feel better. I never loose my faith. But, yes I have nights like this when I am upset and really ask God, "WHY"! What am I supose to do? Please lead me and give me strength. It will be ok.

I also know that this little angel is going to be ok.

I love this picture. She looks so happy and full of energy. You would never know anything is wrong with her.

Stitches

2010-01-04T23:48:00.002-06:00

Today was the only day that Wesley's Dr. could take out the stitches and see him, so Wesley headed down and got them removed. He said it hurt. Ouch. Hurts me just looking at it. He discussed with the Dr. that he has had a few headaches, but nothing like he used to. The Dr. stated that he thinks the settings will have to be adjusted some, but he wants to give it three months. As long as he does not get worse or the headaches do not get more often, then he goes back in three months and we will see.
Actually feels weird. Three months without having to go to the Dr. Feels great. We are both feeling very positive this time. We know he will have to have another revision over time, but we will take what we can get. If he is well for a year, then that is GREAT. We will take what God gives us.
I can not wait until Kyra's appt. on the 19th. I am really worried about her.
I must get into bed. We are going to see Wesley's mother tomorrow. Thank you all for your prayers regarding her. She is back home and slowly getting better. Praise God!!

A Sour Attitude

2010-01-03T21:45:00.002-06:00

I had a sour attitude today towards Wesley and I regret it now. Yes, I said I was sorry. Let me first say that my knee hurts. I fall today at church and hurt my knee. Yes, I fall. On my face, in front of people. If you did not see it you are hearing about it now. Kyra was standing behind me and I fall over her. I had high heels on and could not keep my balance, so on the ground I went. There, my sour mood started.

It does not bother me to tell everyone that I have bad days. I can have a sour attitude. I am not perfect, by any means. I say this because I want others to read it and know that it is ok to have a bad day. No one is perfect. Me and Wesley do not have a A+ marriage. We try and I think we are doing a very good job, but we have bad days too.

Today I was sour and yes it was my fault. Not for sure that I have exactly admitted that to him yet, but I did say I was sorry. I got upset because he had said he would go to church. We go to Sunday School and then he usually meets us there for church. Well today he over slept. Because he stays up half the night and then sleeps half the day. Granted he has sleeping issues and he is in pain. I know, I should understand. So, that upset me. Then I wanted us all to go eat as a family. Nope, he was not hungey. Then, we get home and he just lays in his chair and I could feel steam coming out of my ears. LOL. I went to Wal-Mart to get some milk and cooled off. Yes, I am telling you all this. I had no reason to be upset with him, he just had brain surgery. What do I expect? I feel terrible now. But, this is what it comes down too. I am tired of it just being me and the kids. Everywhere I go. Handling four kids by yourself is a task. Today, it just hit me the wrong way. I think when you are tired and worn down, small things really bother you more then normal. That happen to me today. But, all is good. He understands and has forgiven me. Life goes on!

The kids go back to school tomorrow. Really, I am not happy. That means the mornings become CRAZY again. I am really hoping I start landing some subbing jobs. I have got to start studding. Today was not the day to embark on that. Since I was sour and all ;)

Praying God's Word

2010-01-02T21:47:00.003-06:00

Patience to wait does not come from suffering long for what we lack but from sitting long in what we have.

I am trying to stick with one of my goals. I have been doing my daily bible readings and I am reading Praying God's Word by Beth Moore. I may include in my blog some of what I read. I just want to give more of my time to God. I think we all get so wrapped up in everyday life that we let the important things slip. I know I do anyway.

Today I took the kids to Chuck E Cheese. 4 kids, a Saturday, by myself, at Chuck E Cheese. I thought maybe I was crazy, but it really was not that bad. The kids had a blast. One last thing before school starts back on Monday.

I am feeling like I may have stuck my foot in my mouth last night. Wesley got a bad headache late last night and did not sleep well. The headache has continued today. He has not felt well today. Has felt sick to his stomach, just the same old Chiari crap. We know and have came to terms with the fact that he will have bad days. Everyday will not be great. But, I will admit, I do not know what he is thinking. But, I can not help but be a bit scared. Please, is this going to continue again, EVERYDAY? One HUGE positive is the shunt he has in now; the pressure settings can be changed. So, by the time he goes back to the Dr. in a week, he may just need the settings changed. The Dr. did say it could take weeks to get the setting exactly how they need to be. We will see. I tell myself every morning, "one day at a time". I would be totally lieing if I said it was not a bit depressing, because it is. I looked around at Chuck E Cheese today and so many kids had their dads there playing with them. Wesley felt to bad to go. It is hard to explain, but somedays it is very depressing. But, so far day 2 of 2010 and I am staying very positive and having the attitude I want to have.

On another note. I have had a few e-mail me regarding Chiari. I am so thrilled that my blog is getting around. I will help anyone in anyway I can. I am no Dr. or expert, but I will try and give support. We can BEAT Chiari together. If you are e-mailing me or if you have left me a comment, please leave your e-mail so that I can contact you. :)

The New Year

2010-01-01T22:47:00.004-06:00

Here in the Bounds House the New Year is starting off well. Wesley is doing good. Still sore, but thats to be expected. So far, headaches seem to be doing good. His head is so sore, it is hard to tell. I just really feel like deep down that this was it. He is going to be well for a long while. Of course we know that with Chiari he will have a bad day here and there, but overall I am feeling very positive.
I do have to admit that I am very scared about Kyra. I am really looking forward to her appt., so I can get some more information and really find out what we are looking at. I think no matter what that 2010 is going to be better. If anything I have grown so much in 2009 and became a lot stronger.

Just some helpful information for everyone. Breanna fall tonight and took a chunk into her tongue. Just so you know the Dr. said tongues heal theirselves. We talked to him on the phone, just to make sure there was nothing else we needed to go.
Poor baby. But, she is fine now.

Back to business as usual at the Bounds House. Loud Loud and Louder. I would not have it any different. Goodnight All!!

Haley's Letter

2010-01-01T22:34:00.003-06:00

Haley wrote this letter in her scrapbook and I wanted to share it with everyone. Yes, I got her permission.

My life is different from a lot of my friends. I have one brother, two sisters, and two parents. I have a dog named Gabby. I love all the gifts that are given to me and I am thankful for what I have. My dads name is Wesley. My dad was diagnosed with Chiari, a rare brain disease in June 2008. He still is struggling with it, but whatever happens we are all giving him love and prayers and we are getting through this together. He is a police officer and he loves his job and loves all of us. My moms name is Kristy, she is a stay at home mom. She almost always takes and picks us up from school. She has done a lot of research on Chiari and knows a lot about it. That is good for all of our questions. My brother's name is Blake, he is a video game addict; he loves Mario games. He is a lot of fun and I could not live without him. My sisters are fun too. My four year old sisters name is Kyra. She was diagnosed with Chiari, just like my dad. Hers is not as bad as my dads, but it is still sad to know that she has it. My two year old sisters name is Breanna. She is cute and loves to play outside. She is the one I usually never fight with, but I love them all equal. I have to say I am unique, you will never find another girl like me.

Happy New Year

2009-12-31T23:32:00.002-06:00

I am ready for 2010. Here is how we brought in the night.

Haley spent the night with some friends and we hung out at home and played games. My black eye peas are cooking and I have my goals made.
2010 is going to be a better year for everyone; that is my prayer. The year is what we make it. Lets start the year off with a very positive attitude and take one day at a time.
My goals:
**I am going to start at least one exercise class. I have a membership and do nothing with it. It is time to take care of myself as well.
**My fingers were finger printed today and I am back on the sub list. I have decided after a lot of prayers that teaching is the route I am going. I have studding to do and a test to take, along with some classes. But, my goal for 2010 is to get my teaching certificate. It will only take me six months through Region 10, since I already have a degree. I can do it!
**I am going to give more of my time to God. I am going to become even closer to God. I want to start reading my daily bible and stick with it.
I have a lot to work towards. What I do know is I am so blessed.
Happy New Year to Everyone!!

Home Sweet Home

2009-12-30T22:32:00.002-06:00

We made it home. So glad to be home. The first thing Breanna said was, "daddy your boo boo looks like a candy cane". BHAHAHHAHAH. Kyra loved it. She is strange. Like I said, I see a Dr. or nurse in her future. The first thing Blake said, "mommy I really need a ride to Game Stop so I can use my gift card". So, of course I took him.
Wesley has been doing good. He is just worn out and sore. He has not been able to sleep at all. Maybe two hours in the last 24 hours. Maybe the medication, I do not know. But, it is 10:30 and he has been out for two hours. I am hoping he makes it for a while.
Whats everyone doing New Years Eve? I am thinking we will take it easy and play with the kids. OU plays too, so Wesley will want to tune in for that.
So glad to be home!!

Going Home!!

2009-12-30T10:26:00.002-06:00

We are packing up and getting ready to go home. The scans came back good, so far he is just very sore and still swollen. All that is normal. Now we wait and see what happens. Time will tell!! He goes back to the Dr. in 10 days. By that time we should know if the pressure settings need to be changed or anything. We are feeling very positive. We pray this is the last time we are here for a VERY long time.
We are missing the kids bad. Kyra is going to love daddy's BOO BOO. She will grow up and do something that deals with blood. HEHE.
She loves BOO BOO's. She is so funny!!
I will update after we get settled in at home. We plan to take the next couple days easy. We hope to go see Wesley's mother on Friday. Keep praying for Tresa.

Woo Hoo

2009-12-29T17:44:00.002-06:00

He is back to making me laugh!!! Woo Hoo. He is doing a lot better today. We may just be going home tomorrow. They have dropped his medication and so far he is doing well. Praise God! I pray so much that this is the end of his problems for a long time or how about forever. I want him to hunt again, I want him to play golf, I want him to get to enjoy his job, I want him to be the father he wants to be.

Next will be to focus on Kyra. One day at a time. Thank you all so much for your prayers.

I ask too that you pray for Wesley's mother, Tresa Robinson. She had a complication from back surgery and she is not doing good. She really needs our prayers. We hope to be going up to see her by the end of the week.
Also please pray for the parents of Jami Jeffers. Mollie and James Jeffers. They are the parents of my childhood best friend that passed away on Christmas. This was so unexpected and she was so young, they really need our prayers for strength and comfort.

Connection

2009-12-29T09:51:00.003-06:00

The connection here is horrible. About the time I get an e-mail typed up it kicks me off. For some reason I can usually keep logged onto the blog. So I will keep updating it, instead of trying to send out e-mails.
As you can see from the picture, the Dr. went into his head and replaced the shunt. He also had to tighten up the tube into the chest, which is why he has a cut there. The shunt that is in now, is programmable. Meaning you can change the setting on it, to how much fluid is pumped out. See, when you have to much fluid build up thats when you get the horrible headaches. The Dr. said it may take weeks of coming into the office to get it exactly right. Hopefully in about a month he is doing much better. We will not know how long this will last, until it fails. But, this is a lot better shunt so hopefully we are looking at YEARS before anything goes wrong. We have not heard anything back on the scans. No news is good news right??
Today he needs to sleep and get pain under control. They have started cutting back medicine. We will see how that goes. Update later.
The kids are in good hands and doing fine.

Battle Scar

2009-12-29T08:42:00.002-06:00

This will be very gross to some, sorry. For the ones that wanted to see here is Wesley's new battle scar.

So far today his pain is better. He will not be getting out today. We have not heard anything on the scans yet. We know this will be many weeks of progress. He will have to go into the Dr. and have the setting changed until he is getting the most relief. We will take one day at a time. Will update later.

Not Much Change

2009-12-28T20:18:00.002-06:00

Still in a lot of pain. Wesley has a very high pain level, but he is really in a lot of pain. Hopefully it is all just surgery related. The Dr. is doing a CT Scan in the morning and that will tell us more.
Has been a very long day. We left the house about 4:00am and were here right on time. The surgery went as planned, he has a ugly battle scar this time. But, in the end it will all be worth it if he is healthy.
The kids are all doing well. I spoke with Breanna and Kyra a little while ago and they can not wait to see daddy's new boo boo.
I will update first thing in the morning.
Thanks so much for your calls, prayers, and texts today. Thank you Amy for our basket of goodies. You knew I needed to gain some weight. NOT!!!
Love To All!!

Out of Surgery

2009-12-28T14:53:00.002-06:00

I will update more later. I have got to get some sleep. Have only had three hours. He was out of surgery and in his room by noon. He is in a lot of pain, trying to get that under control right now. The Dr. ended up cutting about six inchs on his head and a small cut on his chest. He is swollen and very sore. A CT Scan will be performed in the morning to make sure it is placed right and fluid is good. Time will tell.

Really Struggling

2009-12-27T15:08:00.002-06:00

Backtrack..
My childhood friend passed away a day ago. We have not talked in a few years and for that I feel so bad. Not for any reason, we just lost touch. In elem. school and middle we were best friends. Always together. She went to my dads with me on the weekends, she was even in my wedding. My best friend from highschool was also in my wedding and a year after our wedding she got killed in a car accident. A year after my brother got killed in a car accident.
When I heard the news today, I went and saw her parents. They live in the same house, right around the corner from me. So many memories. Seems unreal. It is so hard to understand "why". I know that no one knows when you will go, but today made me realize even more that we need to live everyday like it is our last.
If that is one thing I have learned my whole life is that. You never know!!! I miss my brother and Stormie so much. Now Jamie is with them.
It makes me really want to reconnect with several friends. I am beyond words and my mind is going ninety to nothing today.

Not to mention in 12 hours we will be heading to the hospital. We have to be there at 5:30am. I have to be strong for Wesley. But, I would be lying if I said I was not scared. Lisa is going to stay with me during surgery tommorrow, thank God for her. I did not want to be alone. Thank you all for your prayers.

Bald & Ready

2009-12-26T23:48:00.004-06:00

Ready for Surgery!!

Merry Christmas

2009-12-26T00:09:00.005-06:00

I am actually 10 mins last. It is 12:10am. What a busy day. But, it has been a great day. Santa came, even though we threatened that he was skipping our house this year. Why do parents say that? I mean is there really a parent out there, that will do what they threaten when it comes to Santa. HEHE NO.
Santa came and the kids love their gifts.
Let me start by introducing our new family member. His name is Magic.

We had a great Christmas. We are so thankful for all the ones that have helped us, whether it has been financially, food, a card, or just prayers; we are so thankful! Monday is almost here. Merry Christmas.

Snow Angels!

The Aftermath!!