Thoughts and Emotions

It almost seems a bit unreal that we leave Wednesday.
May 2008- I remember us going to the Dr for all the problems Wesley was having. I remember one Dr. telling us he was having sinus issues and we needed to see a sinus Dr. After hearing that we went home that night with sinuses on our mind. Sinuses; great. He will probably have to have surgery for his sinuses, he will be down for a week, what will this cost us. What a pain! How selfish were we? After going to the sinus Dr. we hear the shock that nothing could had prepared us for. A Brain defect has been found on his MRI. This has nothing to do with sinuses, infact much worse.
We left thinking, oh God, after all we said. We would give anything for it to had just been sinuses. Sinus surgery, who cares what it cost.
But, a brain defect nothing could had prepared us. And, ever since that day, our lives have changed. Everything seemed to get worse day after day. This disease has no cure, the older he gets the worse he will get, your children have a high chance of having this disease, etc.
The person Wesley was, will never be the same. Through this all we have struggled with our faith and we have always came back to this thought; "God chose Wesley to have this disease and we will PRAISE the one that chose Wesley to go down this road".
I go into this trip with many mixed emotions. We know that this disease has no CURE. I find myself asking God; should I even be praying for Wesley to be healed? Or should I pray for peace with the fact that Wesley will never be healed? I am not for sure. But, I believe that until I have went through EVER option to at least get Wesley to where he lives the best life he can then I have not done what I am here to do. New York is another step. I am not for sure that I am ready to hear, " nothing else can be done". Thats what is so scary. Not knowing.
I have accepted the reality that Wesley will never be the same and changes will have to be made. I truly believe that God chose Wesley to have this disease for a reason.

In 48 hours we will be in New York. If I do not update before, I will update as soon as we get there and probably pretty often. I am going to have a lot of time on my hands. Wesley will be in testing most of the day on Thrusday. :)

Wonderful Thanksgiving

I have been trying to post since Thanksgiving; we have been so busy. We spent Thanksgiving with Wesley's family. So much to be thankful for this year. We had a very good day. I ate so much I felt like I would be sick the rest of the day, hehe. I am sure the scale shows my pain too, but I have yet to step on and find out.
Friday I did my usual Black Friday Shopping. I had a very certain things I needed and I got them without any problems. I do not mind crowds, I am never in a hurry, so it does not bother me. My mother on the other hand, I do not think she will ever do it again. After shopping we went to my dads side of the family and had Thanksgiving Lunch. A lot of funny time the last few days and it has been nice. It has been nice to have the kids out of school, no need to hurry, no need to get up early (besides Black Friday, hehe), it has been a nice week.
Wesley has been doing pretty well. Praise God for that.
Friday night we put up all of our Christmas decorations. It is always such a fun time for the kids.

Here they all are decorating the tree.

The finished product :)

Now it is Saturday. We leave in four days. Reality has hit. So much to get done. The fear has set in. As much as I know God is with us, I am scared. I ask for your continous prayers for our safely, peace, knowledge, our kids, the caregivers, the Dr.'s, the nurses, fears; just please remember us in your prayers. This is the time we have longed for- for months, but it is so very scary.

Blessed

There has been many days to where I felt like the walls were falling in on me. I felt like I had noone. Why is this happening to us? Why Why?? Why did I make stupid decisions as a teenager? Why did my brother get killed? Why did my best friend get killed? Now, what my husband? Why is he so sick? I could go on and on. I could drown in my pity. But, no longer. God is taking care of me, of my family, and I will be ok. I am stronger then I ever thought I was, God is showing me that.
The saying, "God does not give you more then you can handle", SO TRUE!
I am so blessed. God has had a plan for me all along. I still do not understand some of it and I never will. Not in this life. Thats ok. I feel safe! I feel at peace!
Wesley is going to be ok. When we got pregnant young, got married young, the odds were against us. A lot of people were against us. Guess what, we showed them! God did this. We will grow old together. I am so at peace.
Now does this mean I am not going to have a bad day. No, I have bad days all the times. The whole point is, I realize how very blessed I am. And, I am finally at peace with my life. Still do not understand some of it and I never will. We are finding a new "normal". We know Wesley will never be the same. We know one of the kids may have this disease. We know that changes have to be made. Thats ok.

I have always been a giving person. When Wesley became ill it was so hard for me to take from others. Somedays it still is. But, I have learned that it makes people feel better to help. I am so thankful for all the help we have received. There are so many that love our family. It melts my heart. Tonight Amyee, I attend church with her and she was my manager where I used to work. Anyhow her and everyone at Healthline, where I worked brought us a bunch of food. Made my night!

The kids had a blast neating stacking everything so that I could take a picture :)
Healthline has done so much for us. I only worked there three months. They barely even know us. It breaks my heart that I quit, but I am so blessed to have met them all and to have them in our lives. Thanks Amyee and Heathline!! What wonderful people!
I could not even list in an hour how many people have helped us. Whether it has been money, food, a visit, a call, so many amazing people in our lives.
I want to close with how blessed I am to have my four wonderful children.
I walk down the hall tonight to hear Blake saying his prayers. It was hard to hear everything, but I picked up on him saying, "God please make Sam Bradford better so that he can play football again somday", "God please make my daddy well". God love him! I felt like I am doing something right. To hear him pray on his own and pray for others.

Busy Busy

Taking care of sick people. Finally things have calmed down enough for me to blog. After Blake, Kyra came down with the tummy bug. Then that same day Wesley started getting sick. Except he had fever, his head was killing him, throwing up, very sick. After hours of this and his fever going up we took him to the ER. We just never know if it is brain related and we would rather pay a $50.00 co-pay and be safe.
So we spent six hours in the ER. His white blood cell count was up but he tested negative for the flu. They did not think it was brain related. The Dr. said they thought he just had a viral infection and it just had to run its course.
Two days later, being at home doing nothing but sleeping, he is better. Now we are praying that everyone is done getting sick and that we can get ready for Thanksgiving.
We have all been stuck in the house. Did not get to go to church or anywhere for a few days. So today I took the kids to Jump-Land and out for lunch. Things are feeling normal again. Well if you call our life normal. Thursday we are going to go up to Wesley's moms house for Thanksgiving. We will only be gone for the day, because I love to shop on Black Friday! Then Friday afternoon I will spend with my family. We are blessed this year because Wesley's days off fall on Thursday and Friday. So he is off. He has got to work two days this week, ugh. But, at least he is feeling better.
So there is an update. Sick bugs in my house! But, everything is still on. We fly out on the 2nd. Week from tomorrow. YAY!!!!

Black Cloud

I have not been blogging much, really nothing to say. Does anyone even read this anyway, I have no clue.
As positive as I try to be, it seems to be getting harder and harder to stay that way.
Wesley went to the Dr. in Dallas on Thursday. He stated that he thinks Wesley needs a shunt revision, that it was draining even slower. Of course, he is not the Dr. to do it, so we would have to see a different one. But, none the less, he thinks that will be one thing he needs. No way to know how quickly it will quit working all together. But, that can explain why he always hurts. The Dr. did think New York was the best ideal we had so far. He said he has tried ever medicine he could and that it is Chiari and the best thing to do is see a Specialist.
As the time approaches, we are having all kinds of mixed emotions and worries.

We have had a rough time keeping the kids well. The last time we had the tummy bug, Blake and myself was the only ones that did not get it. Well a month later, Blake is sick. Now, am I next? Ugh.. I hope not! And will it go around to everyone again? Ugh.. So, today I am just feeling like, "how much more can I take".

I guess this post turned into a downer. But, the truth is I am not a fake person, and I can not pretend. Everyday is not peaches and cream at our house. We have a lot to be thankful for, but we have our bad days just like everyone else.

Two Weeks

Two more weeks and we will be in the air. Have I mentioned that I am terrified of flying. Well if not, I AM. It is something in my head. I have only flew twice. It is something in my head about it crushing. I am just terrified. So, I think that will be the hardest part for me. Well maybe the results of tests to, but still...
But, I will get over it and two weeks from now we will be flying.
Yesterday we got all the papers. It is really going to happen this time. I was scared to believe that, but it has become real. I was starting to think that it was not in God's plan for us to go to NY. But, I now believe it is very much in his plans. We still have lots to do before we leave, but next week we will enjoy Thanksgiving and give thanks for how blessed we are.

A friend reminded me that even with this NY trip Wesley will never be cured and he will never be the Wesley he was two years ago. That is reality, and I think I have finally realized that. Because our life now, is what we are thankful for. It could be so much worse. We still laugh and most of all the kids still have their father.

*God allows us to experience the low points of life in order to teach us lessons we could not learn in any other way. The way we learn those lessons is not to deny the feelings but to find the meanings underlying them.”

Making Time for Myself

It seems so rare nowdays that I make time for myself. There just seems to be no time. By the time the kids are in bed at night I am so tired. This must change. I need to take time to just sit and do what I want. I like to sit in a room by myself with complete silence, maybe some music, and do something I enjoy. This is usually when I blog and I need to make a point to read more, especially my bible. Most of all at the end of the day I need to be giving my worries over to God, because lately I am having trouble with that.

**Give your worries over to God at night, he stays up all night anyway.

So today I am starting a goal, to give myself at least 30 mins a day to ME. And, not all 30 mins blogging, I need to read my bible. So here we go. I will keep you updated on how I do.

Sunday night at church I went and helped with our youth group. And, what an amazing youth group we have. I could brag and brag on them. Of course, having an amazing youth minister really helps.
Anyhow, each kid brought in some money. The ideal was not to ask your parents, but some of your own money. With this money the kids went shopping and they filled boxes to send to Mexico for children for Christmas.
It is called the Magi Project. Our youth brought in over $500.00. I believe we did around 21 boxes. Each box you spent $25.00 on. We all went shopping. My group did four boxes. Two girls and Two Boys ages 2-9. We were able to get a lot. Toothbrush, toothpaste, toy, soap, underwear, etc.
What an amazing feeling this gave us all. Not to mention that 25 kids brought in over $500.00. Very proud of them. I was so blessed to get to share in that night with not only Haley, but the youth group.

Christmas Photos

We got our Christmas photos made today. We were supose to last weekend. Well, Wesley was sick and things were just not going well. I prayed that Wesley would have a good day and he did. Thank you Lord!
Theresa took so many pictures. I do not know how I am going to pick. It takes forever to upload pictures on here, so if you would like to see them all and have not already on facebook or something, then you can go to Theresa's website on the sidebar and go down to Bounds Family and they are all there.
She is amazing. It was not stressful and I think we only had one melt down and one booboo. I have to say, I am glad they are done with.
That was one thing I wanted to have done before NY. You never know what they may have to do or what might come up.

Speaking of NY. About two weeks away. And, it could not come sooner. My hearts breaks for Wesley and I try very hard to bare with it and try to understand what he is going through. But, I have to be honest there are days where it wears on me and I get mad at him. I know it is not his fault, but this is affecting the whole family. I am going to hold on to that little piece of hope that he will get better.

Busy Weekend

Friday at lunch we went and had Thanksgiving luncheon at Hyde Park with Blake. I love listening and watching him interact with his friends.
Then Friday night was Kyra's party at Chuck E Cheese. A lot of her friends came and she got a lot of nice gifts. Thanks to everyone!
Theresa, my neighbor, that takes pictures she took all the pictures of Kyra's party so I did not have to worry about it. Thank goodness she did, because there were so many kids, it was crazy. Our poor host guy, it was his second night. I think we both confused each other several times. But, overall it was great party and Kyra had a great 4th birthday.
With how crazy our life has been the past few months and how sick Wesley has become, I worry about the small things and if we will be able to do them. I was so worried about Kyra's birthday interfering with New York and I wanted to make sure she had a birthday and felt special. Well, it all worked out. God is amazing!!
Here are some photos.



This is a friend of mine Buffy that made her cakes. She has made a lot of my kids birthday cakes. Her information is on my sidebar. She can do anything.

Ok, I will add more pictures another time they take so long to load.

WOO HOO

The dates this time should be a done deal. I do not know of anything that would set us back this time. Of course, I thought that last time too. HEHE.
Recap
After appealing with the insurance company, they came back and said they would pay for one test. The test they are paying for is an important one. So after talking to NY today, it has been decided that they best thing to do is this:
**NY will use the one test that the insurance company has approved, along with his brain MRI that he had done here not to long ago and with some X-rays that NY will be peforming. All of this is enough to see the Dr. and hopefully Wesley can get some help. If more test need to be ran, the insurance company is going to come more paying for them because he has seen the Dr. The insurance company told me that theirselves.
So we know that there is a big chance we will have to go back again or maybe even three times, depending on surgery if needed.
Because of all the paperwork that needs to come to us, Thanksgiving, Etc. the first time he could get in is Dec 3rd and 4th. 3rd being all the tests and 4th seeing all the Dr.'s.
We are praising God, as this is a START.
Wesley is not doing well. It has gone from about three bad days a week to about six. No joke! Now somedays are worse then others, but this is taking a big toll on not only him, but all of us.
We know more then ever now that God is in control. I still do not understand his plan or why this has all happen, but even if we never know everything, what we do know is God is on our side. I pray every night that Wesley does not lose sight of that. I worry about him a lot. Goodnight all. Tomorrow is a big deal. We will be partying with Chuck E Cheese for Kyra's birthday. She is so EXCITED!

What a week!!

This will be brief.
I will try and write more tonight. Busy Busy
We have an New York appt. Dec. 3 and 4th. The insurance company only approved one MRI that needs to be done. But, with what he already has and some X-rays; it is enough to see the Dr. It is a start. I will explain more later.

Happy Birthday Kyra

Here is Kyra in a undated photo. She has always been such a spit fire. She has always been so happy.

Here is Kyra now. 4 years old.


I found myself thanking God today that Kyra is healthy. She has always been so healthly from birth on. Wesley calls Kyra Jr. and thats exactly what she is. She is a mini version of me. I am Sr she is Jr. Happy Birthday to Kyra. We will be celebrating with Chuck E Cheese on Friday. :)

New developments today.
Well I am sick. I went to the Dr. and I have a sinus infection. I feel bad. But, when you are a mom your job does not stop because you are sick. So I am trying to manage.
The insurance company called today and they have approved one test out of the six. Not for sure that I should be jumping for joy. So now we are waiting to hear back from NY to see what they say. The insurance company stated that maybe we could go have the one test ran see a Dr. and if more tests are needed we could go from there. What I guess they do not understand is we can not afford to go back and forth to NY several times. I feel like I have no clue what to do anymore. Hopefully NY calls in the morning and gives me some direction.
Tonight I find myself feeling overwelmed and upset. I thought we would be on a plane tomorrow and it is upsetting that we will not be.
But, I have to continue believing that it will happen when the time is right.

What a Weekend

I ended up with Blake in the ER this morning. He was having trouble breathing and I could not get it under control. Well, he has bronchitis. He is already feeling better.
Two trips to the ER in one weekend. Better things to come, I hope.
I am good. I was not good all weekend. I had my moments. But, I am back on track and this week I plan to be a pest to the insurance company and get Wesley the help he needs.
When I give myself time to think it hurts that we are not leaving Wednesday. But, when the time is right we will be leaving. I really do have faith that he will get in, just going to take some convicing I believe.
So here is to a GREAT week ahead. Cheers!!

Two Steps Forward and Three Steps Back

As I said, I was looking so forward to the marriage seminar at church today. We had to be there at 8:30. I knew that alone was going to be hard on Wesley, since he does not sleep very well at night.
Wesley is an amazing husband, father, person. I really mean that. Trust me we have our issues, but I am very lucky. Despite everything he got up this morning and we made it to church. He was feeling "ok", not "great". As the morning went along his head got worse. Somedays thats what it does. No clue why. And, thats the strange thing about Chiari. One minute you can be fine and the next minute you can be so sick.
So my lunch, he had thrown up, was pale, dizzy. He tried to walk it out, but we had to leave. But, he made it to lunch.
By the time we got home he was worse. At this point he could not walk straight, he was shaking, not talking plain. I knew it was a bad one. It has happen to him before but not in a long while. We decided to head to the ER. We knew he would not get it under control himself.
The rest of our Saturday was spent in the ER. They pumped him full of medicine. It did help somewhat. Basically they just said he had a bad headache, which caused everything else. He was there a while and we got home about 6:00.

Thanks to my mom today. She helped with all the kids. I knew Blake had not been feeling really well, but by the time we got home he had a high fever and cough. Not for sure what he has. It could be his asthma, because his chest is bothering him. Or could be the flu. I have medicine I am giving him and he already seems to be a little better. We will watch him and see.

What bothers me the most is I just looked at Wesley is the hospital bed and thought there is nothing I can do for him. There is really nothing these Dr.'s can do but pump him full of medicine. And I am trying so hard to keep faith that he will get better. I know there is no cure, but there has to be a better quality of life then what he is living.

Thank you to my many friends today. I am very blessed.

Kyra's Birthday

I have been eatting myself up because Kyra's birthday is Tuesday the 10th. She will be 4. Well I thought we were going to be leaving, so I was going to put her party off a few weeks. Hints, I have not done anything for it. Well, now we are not leaving. And, I just felt awful that I have nothing planned. Not that she even knows the difference, but I do. So, guess what. I pulled it together. She will be having her Chuck E Cheese party on the 13th, just like she wanted. Does not give her guests a lot of time, but hopefully at least a few get to come. If anything she has enough with her sisters and brother :)
So I am feeling better about that. I am making muffins and taking to her class on Monday. They are celebrating her birthday then.
I can not believe she will be four. She is the spliting image of me. More personality then looks. She was my child that came so quick, I got no pain medicine or anything. I will never forget her delivery. She was the best baby. So happy. And she still is to this day.

I have kept myself very busy tonight. I am feeling better and I am going to fight. I plan to get Wesley's spirits up :)

Recap

The Last 24 hours.
WOW. I have had to do some sleeping, crying, praying, thinking. Get my head back on right.
The day started yesterday with us finding out, that when New York ordered all the tests that Wesley would be needing, they denied everything. While this was all going on, we were getting Kyra ready for her MRI.
We started really quick trying to appeal the insurance company. As of today, Wesley's Dr. here has sent more progress notes, MRI, etc. to the insurance company. They have four days to make a decision. Hopefully that decision is YES.
Because of the time frame next week had to be canceled. NY is back up in the air. The next available appt. is Dec. 17th, but she did state if the insurance approves she can try and pull some strings to get him in quicker.
What does this all equal---more waiting.

Kyra got her MRI done and she was such a trooper. She was not able to eat after 9am or drink after 1pm. Well they did not even take her back until after 4:30. She did not get upset until about 4:15. She did great. They gave her some gas to breathe in first and she was out quick. That was the only part that got me. It was like she was dead. After they got her out, they put in the IV. She never knew anything. It only took about 30 mins. She woke up really quick. Infact the Dr. stated a lot quicker then most kids do. She was up and ready to eat. We took her out to eat. The whole process was a lot easier then I thought it would be. We just got the report back and she has NO sign of Chiari. Her brain was perfect. Nothing wrong. So she was either saying it because of Wesley or I may just need to get her eyes checked. Could be something as simple as that.
Here she is waiting to go back.


At first I regreted even having it done, but she did not know anything, so all is good.

This is Slush. Her new dog that she got at the hospital.


I feel better then I did yesterday. I feel like Satan is punching me in the face. Time and time again. I would be not honest if I said we were not struggling. We are.
Wesley is giving up. I want to, but something keeps me going and tells me to fight! With that being said we are going to FIGHT.

WHY

Insurance said they would pay for nothing. That he is not BAD enough to be going to NY. I can not EXPLAIN how UPSET we are. We are fighting right now with the insurance and Dr. Update later. Leaving for Dallas.

The Day Has Come..

I explained everything to Kyra today. Well, not really. Because I really have no clue what exactly is going to take place. I explain why she can not eat and she just can drink. She says, "ok, can I still poop and pee". BHAHAHAH.. Love how nothing bothers kids. So, so far she is good. We are leaving around 12:30. MRI is at 3:00.

A lady from my church is a member on a cooking website. Anyhow, she came across a lady from Florida that her and her daugther have Chiari. They have gotten treatment in NY. I got to talk to her last night. We talked for over an hour. Terry, thank you so much. She was so helpful. She gave me a lot of information to take in. I am still staying very positive about NY. The downside is, I realize more and more what a horrible disease Chiari is and how Wesley will never be 100% again. And thats reality. I can only pray that a cure is found. For sure in my children's lifetime. Terry is going to be my rock. I am sure I will be calling her a lot. Especially while we are in NY.

It is amazing how God works. And no matter what we find out today, God is with me and my family. I can not sit and worry for years to come that one of our kids have Chiari. If they do, they do. We will deal with it. The important thing, is we keep trying to get Wesley well enought to enjoy his life, children, and grandchildren.

Six days until we leave. We have so much to do. Tomorrow we are getting our Christmas photos done. Theresa down our street is doing them. She is wonderful. You can get her information on the sidebar of our blog. We are doing them out at the Reba House. And what a beautiful day it is supose to be. I just want to have them done incase of surgery or anything.
Then on Saturday me and Wesley are going to a Marriage Seminar at our church. I am so excited about this. Not for sure how excited Wesley is, but at least he is going. My prayer to God, is, "please give Wesley two good days in a roll".
The past week he has been worse. Sick. He has had to call in some. His hearing is messed up in one ear and his headaches have been unbearable.

I will update as soon as I can tonight. Thank you all for thinking of us today and your prayers. I can feel all the LOVE :)

Honest...

Ok.. This is going to be a post full of me being honest.
I am trying to be strong, I am trying to give all my worries to God, but the truth is today I am SCARED.
I have all kinds of thoughts going through my head about Thursday.
*What if Kyra has Chiari?
*What if she has a tumor or something worse?
*What if I break down and are not strong for her?
Ugh.. I cry just thinking about it all. Why?
But, it needs to be done. We need to know. I have not told her yet and I am not going to tell her until the morning of. I have her a little bag full of some new things. Pens, stickers. We will take her favorite stuffed animal and her blanket. Deep down I know everything will be ok and God will get us through this no matter what. Today is just one of those days. Satan is trying to bring my down.

And as for New York. I can not believe we leave in a week and two days. Things are coming together. I still have a lot of little things to do but I can not really do them until closer till.
Well, speaking of Kyra bug time to get ready to get her from school. She will be 4 Nov. 10th. Can not believe she is already four.

Halloween

Tons and Tons of candy.
The day started with Blake's last football game. Then we went to the Fall Festival at church. What a beautiful day. It turned out great. The kids had a lot of fun.
Wesley had a bad day today. Worse then he has had in a while. He was unable to do anything and had to call into work.
Maybe that was God's way of keeping him home so he could see the kids in their Halloween costumes. I do not know. But, tonight he is better. Hopefully he wakes up feeling pretty good and can make church.
We ended the day Trick-or-Treating. So much candy. Tons!!!

Here are some photos.

Breanna painting her pumpkin at church.


Kyra's Pumpkin. She is very proud of it.


Bobbing for an apple from a tree instead of water. HEHE