Happy New Year

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

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!!

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

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

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

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

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

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

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

Ready for Surgery!!

Merry Christmas

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!!

I am Dreaming of a White Christmas..

And I got my wish.

I have no clue when the last time we had a White Christmas was? But, I know it was before the kids were born. So exciting. Today has been a wonderful day. I could feel God today. I felt such peace and comfort today.
The day started by me receiving a package from my aunt. A package all for me. It has some goodies for me to take the hospital or eat now if I can not save them :)
She also sent me this. It just brightened my day!

We let the kids open one gift and they played some in the snow. We had a very layed back family day. Here they are.

Then someone from church who signs the card, "secret sister" had me a package with goodies for me and a ornament for each of the kids. So sweet. This has been my day. :)
Really, I have just enjoyed being home with the kids and Wesley. I want to wish everyone a very Merry Christmas.

Snow

Who all thinks we will have snow on Christmas? That would be great. The weather man is saying we may get some tomorrow and maybe it will stick around. I guess we will see. We have a couple places to go, but local, so I say bring on the snow. The kids would love it.

Today I finished shopping and wrapping. Everything is ready. I am finally feeling a little more in the Holiday Spirit. I have done a lot of thinking today. I remember back when I was a child and how excited I was. How excited I was about Santa coming. I used to get so mad at my brother, because he was so slow about going to bed the night before and I was so afaird that Santa would pass us up if we were not asleep. I remember my favorite doll that I got one Christmas. She would turn her arm and her hair grew. How neat is that!!
Now I see the same thing through my children. Such a wonderful feeling. I was also thinking today that I want my children to really understand that Christmas is not just about a man in a red suit, it is Jesus's birthday. I do not want anyone to forget what Christmas is really about. I saw on a show where the mother and children bake a cake and celebrate Jesus's birthday. We maybe doing that. I thought that was a great ideal.
And before we know it 2010 will be here. Through everything that 2009 has brought our way, I really feel like 2010 will be so much better. I think mainly because I am stronger now. But, I really feel like we will get through everything. Things are going to get better. There is a lot I want to do and change in 2010 and I just know things are going to be better.

Cheering Up

Hope this helps someone else too.

I went to my Christmas Bunco Party tonight. If anyone is wondering what Bunco is- it is a dice game. We play once a month. We have a secret pal within the group. Tonight she made me feel better, she is really good at that. Here is what the card said:
Hang in There-Be Strong
If you get discouraged, remember I am thinking of you.. believing in you.. praying for you.. and hoping you know that no matter how big a problem seems or how hopeless you feel, you are never alone, as God's grace is only one request away!

This made me feel better. I hope it makes everyone reading feel good too. Thanks Jennifer. By the way, she is not a secret anymore, we told who we were tonight ;)

What We Find In Jesus

I received this on a Christmas Card, and I wanted to share it.

What we find in Jesus.
We find peace, and the Prince of Peace;
We find righteousness, and the Righteous One;
We find counsel, and the Counselor;
We find wonders, and the Wonderful One;
We find salvation, and the Saviour;
We find the Kingdom, and the King. - Roy Lessin
In Jesus, we find more gifts than our hearts can ever imagine.

The last two days I have really been struggling. I am not a fake person, infact nothing bothers me more then fake people. I will tell you that I do not always understand and tend to let my faith slip from time to time. I do not always have it together and I get mad and upset. I never lose sight of God though, but the last two days my faith has really been slipping.
Not only with our situation, but others too. I have a friend suffering, I have heard of a child with Brain Cancer; there are so many stories. It is hard to understand.

In our situation, I know things could be so much worse. And, I have those people that tell me that. Not sure if they are trying to make me feel worse or better; thats a different story.
I do feel so blessed. As much as I feel like I just do not understand at the same time I feel like God has blessed us and keeps blessing us.
We would had never knew about Kyra if we would not had went to NY. We would had let it go and worst damage could had been done. We would had not gotten any peace concerning Wesley. As blessed as I know we are, I am scared. I am mad. The last two years has not been good. I have never experienced anyone living with so much pain. And now to even think that Kyra has the same disease. Just because it was caught early means nothing. Chiari is a horrible disease and affects everyone different. And if Chiari was not enough Kyra also has a pitutary gland problem. From what I have read about this it may not be good. And, thats what scares me the most is I do not know. I know nothing. I feel like we are starting all over. You never know what the next day will bring. Kyra had a good last week and then the last two days she has been sick.
The unknown of Wesley. Will this surgery work? Maybe by him a few years. A week from now we will be vacationing in the hospital. We joke about that. Vacation at the hospital. Tomorrow we go for Pre-Op. They will do all the blood work, etc.

Enough of the pity for me. I can not be strong everyday and like I said I will not pretend like I am either. Today I am not.

Headaches

I hear that word at least once a day from someone at my house. Somedays it is even me. HEHE. I have really struggled today. Wesley did not feel well today. This afternoon a headache started in on Kyra. She just layed and hurt. Praise God, that the tylenol kicks in fast and works. But, I just want to know. I want Jan. 19th to be here. I want to know what we are looking at and what needs to be done. I just want to KNOW. I am just a bit mad, sad, confused, lost, and every word in between. Thats all I can say tonight.

Busy Busy.

I have been trying to get on here and blog again since Friday. We have been non stop busy. On Friday I worked the AR Store at Blake's school. The AR store has items the students can use their AR points on to purchase. They get the AR points by reading and testing on books. I really enjoy the AR store every year. The students get so excited about it. This time we had a volunteer wrapping the items if anyone wanted to get something for someone for Christmas. When Blake came in the first thing he did was picked out a gift for Kyra and had it wrapped. Awwww... It warmed my heart. Then he got something for himself.
After the AR Store, Blake had his class party. Then Friday night it was off to Wesley's family for Christmas. Then Saturday it was off to my dads family for Christmas. I have really enjoyed the time with family and all the wonderful food.
I am so very thankful for this holiday season. We are so blessed.

Today me and my good friend took my kids and her niece and nephew to the Ice at the Gaylord Texan. The Gaylord was beautiful. The ICE was very amazing. Everything was made out of ice. Just a heads up. If you go, make sure you take gloves, etc. They do have a coat they require you to wear, and for little kids they will be big. Breanna's was very big and her hands did not come out the whole way. So the whole time she was unhappy. Kyra and Blake did good until the very end and then they were frozen. It is 9 degrees in there. We had a good day and the kids did have a good time. I hated to miss church, but it was the only day we could all go. I needed church today. Here are some pictures!



Me and My Blessings


Best Friends!


Beautiful!




Here is the start of not liking the jacket ;)




Melt Down!!!!


All made out of ice! Beautiful!


Worn Out!!

I have to admit I am scared. Surgery is a week away. It never gets easier. I just have to keep my faith. I have to be strong for Wesley and the kids. Please say a prayer for my strength.

Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul." Psalm 143:8

Another week Gone

Well it is Friday, everyone smile and be happy. The kids get out for two weeks today. I am thrilled. When they go back it will be 2010. I am amazed at how fast time goes by. Last night as I watched Kyra's Christmas performance, I remembered back four short years ago. I wanted to stop time. Her first year of Pre-K is half way over. The performance was so cute.
Today is the AR Store at Blake's school. The students get points for reading. Then a store is set up with prizes and they get to use their points. The kids love it. I have been in charge of it was two years and LOVE doing it. I went yesterday and got it all set up and today is the store.
Tonight is our first Christmas event. Wesley's dads side of the family. Then tomorrow we have another. Busy Busy.

Oh Happy Day...

It is almost Christmas. A little hard to believe. The kids are almost out of school for two weeks. We have Christmas events that start Friday. I did get my Christmas cards out. Let me say ahead of time, I am sorry if you do not receive one. I sent out 81 and that was mostly family. I did not get to do as many as I wanted to from church and I am sorry. But, after doing 81, I am just about out of time. But, do know we wish everyone a very Merry Christmas.
I have a few more gifts to get and lots of wrapping to do. It will come together. From here on out we are going to be busy busy.

Kyra did get her Neurosurgeon appt. Jan. 19th at Children's Medical. The Dr. she got, I have heard is very good. This is an answered prayer. The last few days she has been doing well.

I have really been doing a lot of thinking on what career path I want to take. Before I know it all my kids will be in school. I am praying that before I know it, Wesley will be well and Kyra will be ok.
I would love anyone's input on this. So leave me a comment if you would like.
As many know, I have a degree in Social Work. I love people. I love helping people, talking to people. I am a people person. Since I got my degree (2005), I have just been at home with the kids, besides some side jobs. So I have been trying to decide what I want to go back to.
If I go back to Social Work, I feel like it will be in my best interest to get my masters. In the meantime I may could find a Social Work job. I have also considered teaching. I am already on the sub list and I could get my license in about six month. Would be off when the kids are off, etc.
Both have pros and cons and I keep changing my mind. But, it seems everytime, but brain goes right back to Social Work. Hard decision.

Not Enough Hours, Patience, & Energy

If only there were more hours in the day. If only I had more patience, and if only I had more energy. Maybe I could be doing better then I am. I do not know.

I do not have cards mailed, I do not have presents wrapped, I do not have everything purchased, I am losing my patience with everything, and I am just worn out. Really there is nothing noone can do, thank you all for asking. What I need is for Wesley to be healthly and I need none of my kids to have Chiari. Well, I guess the reality is not that. Most days I can get past this, today may not be one of those days. I just can not make myself do much.
I think how nice it would be to just sleep until Wesley has surgery and until Kyra has tests ran, so I know what is next.
But on a good day, I realize how very blessed we are. I have to keep telling myself this. We are blessed by God and so many other people. Wesley and Kyra could be so much worse.
I just find myself angry. I had came to the reality of Wesley, I could deal. I thought we were going to New York for good news! And, then in one breathe everything changed again now my daugther has Chiari. The focus changed. I will never forget the look in Wesley's eyes. Some part of me thinks he blames himself. Even though it is not anywhere near his fault. I just have some angry. Not at God, not at anyone, I am just mad. I will get past it. I will come to the reality of what we have to focus on with Kyra as well. And, let me say like I have stated before, a lot of good did come from New York, but I would had never dreamed we would come back knowing Kyra infact does have Chiari. I was not ready for that!

What we learned yesterday is she does FORSURE have Chiari. Infact it is worse then we thought. When you put it in size terms. She also has a Pituitary Problem. We do not know the details on this yet. It could be mild and just need medication or she could need surgery. As far as the Chiari she will need surgery, we just do not know when. It may can be put off for a long time. Very very invasive surgery, especially on a child. I do not know what is next. All I know is we are being referred to a neurosurgeon at Children's Medical. I am sure it will be after the hoildays and Wesley's surgery before we know anything.

My goal right now is to focus on Christmas and making it the best Christmas ever.

Kyra

After seeing the Dr. today,my little bit of hope is gone. Kyra has Chiari, along with some kind of Pituitary Problem. The report clearly said there was a fluid problem along with her brain falling down. They just did not classify it as Chiari. Which, like the NY Dr. said, whoever did the report was probably not used to seeing Chiari on an MRI. She is being referred to a neurosurgeon at Children's Medical. Thats all I know at this time. Thanks for your continuous prayers. I have really felt God with me today. I was prepared for this.

Feelings

I have been struggling today with emotions.
It starts this morning with me waking up with the whole day ahead of me. I was feeling refresh, could be because I went to bed at 9:15, hehe. Had my sister spend the night with Haley (remember they are only 11 months apart), HOW COOL IS THAT! Anyhow, I was going to take everyone to church and then go out to eat. They had begged me to go out and eat. The only thing missing was Wesley. I wanted him to join us so bad. Well, he had a rough morning and was sick. At that point I just wanted to crawl back into bed and pull the covers over my head. I know it is not his fault, but I am so tired of feeling alone.
The kids LOVE church and I knew there was no backing out now. So we went to church. After church I did what I said I would, I took them out to eat by myself, all five of them. Yes, I got some stares. Oh well!! They ate good and they were happy. That makes me happy.
Church brings me to my other emotion today. We have had so many people help us, pray for us, be there for us and everything in between for the last two years. I can not even explain how thankful we are. It is so hard for me to take from others. I have always been the one that gave, that helped, it is really hard to be on the other end.
You may have to have went through something like that to understand what I mean. As thankful as I am, I still am struggling with the emotions of feeling like we have not been able to take care of ourselves for two years. We have had to have others help. It is hard.
It amazes me everyday at how many people we have toughed. How many people that love us. How many people love my kids. Somedays I wonder why. So many say how brave and strong I am, but sometimes I feel like I am barely hanging on.
One thing that has hit me right in the face, is the fact that I used to have to much pride. God has taught me a lesson and is still teaching me. And, even though I am still struggling, I have came a long ways.
I keep having faith that after this next surgery Wesley will be better. I have a feeling I am going to really need him with Kyra. I think if he can be better and be there for me, things will be so much easier.
Speaking of Kyra, tomorrow is her appt. with her family Dr. We will discuss everything that the NY Dr. told me and study the MRI. Hopefully get some tests on the calendar and some phone calls to some specialists. Thats my hope.
I am nervous. I know I do not know "how bad" yet or what else is going on, but today I have just been upset. Kyra is the spliting imagine of me. Everything; her looks, her personality, the spliting imagine. WHY? Why, does she have everything from me and then she has Wesley's brain disease. It is hard to not feel mad! Even though I really do know that God has a plan and I do know that everything will be ok, today I have let my emotions take over. I am thinking after a goodnights sleep I will feel better. GoodNight All!

Worn Out..

I am very worn out. No matter how hard I try I still have tons to do. I bet a lot of you feel that way this time of year. I still have shopping to do, presents to wrap, cards to send. But, I know it will all come together it always does.

Today me, Haley, and Blake went to the Denison game with my dad. They were in the semi-finals. They did not win, but what an awesome game. They have had a great year. What outstanding students.
I am proud to live in Denison. Of course I am a bit biased because I have lived here my whole life and graduated from Denison. But, being honest here, very good school and talented students. I am proud of that and look so forward to everything my children will get to experience.

This next week is going to be so busy. We already have one Christmas event, we have a band concert, we have a school play, school parties, AR Store at school, and I will need to find time to get all the above done that I listed.
Most importantly, Kyra's Dr. appt. is Monday. Hopefully we can get some tests booked.
Last night she had another headache. She came to be with tears in her eyes and just started crying, saying her head was hurting. It broke my heart, just the look on her face. Luckly with Tylenol she is better usually pretty quick.
Wesley surgery is in about two weeks. Hopefully this is his last one for a long time and last hospital stay.

Is everyone done with your Christmas shopping?

Brrrr...

It is just right up COLD. This morning I was a "terrible" "evil" mother because I made my 11 year old wear her coat. I mean really, "how dare me". She will get over and even though I am sure I will not hear a thank you come out of her mouth, at least I know she will be warm.

Speaking of my eleven year old. She is in middle school now, 6th grade. I am shocked at the things she comes home and tells me that she hears at school. Infact it terrifies me. Sorry, but I will not be telling you all the details. But, it really bothers me that these kids are already saying the things that they are. It has me really doing a lot of thinking. One girl is telling everyone that she is pregnant! Really scary times that we are living in. I just have to pray that me and Wesley are raising her right and that she uses her brain. We are so blessed that she is so involved in our youth group at church and has an AWESOME youth minister. I really think this will play a big part in her life. But, my heart breaks for these kids that really have to clue what they are doing or saying. Where are their parents? Off that soap box!

This week is already almost over. Not for sure where it went. I am looking forward to Monday and seeing Kyra's Dr. I want to see what all he thinks and I want him to look at this MRI and hopefully ease some of my worries. Kyra is doing ok. She has been showing signs this week.
**She has problems with her throat. Hurts to swollow, but nothing is wrong with it.
**Bladder issues. Not to bad this week so far.
**Walking on her tip toes.
**Has only had one headache that she has complain of this week.
I have learned so much from Wesley. Like with Kyra I have started a journal to keep us with everything.

Well, today my goal is to take care of this mountain of mail and bills. Should be fun. HAHA.

Struggling

The last two days I have really been struggling. Everyone asks me how I am. I really am ok. But, I just feel like I am struggling with a bunch of different things right now. Does it make sense to be struggling, but to be ok? Thats how I feel. I barely feel like I am hanging on most days, but I am "ok" because I have God.

As you saw from my last post, Wesley will be having surgery Dec. 28th. We saw Dr. White and I do not feel like he agreed with everything the Dr. from New York said, but he did agree that the shunt needs to be replaced. He is going to put a new kind in. He said, it should help, but there are no promises. Basically he said in nice words, "there is not a lot of hope, Wesley will never be completely well". You know we have heard that many times, and I guess we just still hold on to a little piece of hope. We are praying very hard that this at least helps him to feel a little better and to keep him well for a while. The plan is, he will go in on the 28th stay two days or so in the hospital and have about a two week recovery before he can do much of anything. I will get to shave his head again :). Yes, I do take great pleasure in that!

Kyra had a headache this morning. First one she had complained about in a while. I feel like my heart just stops when she has one. Before, I just told myself, awww, she is just saying that. She is fine. Now, it is different. I know what she has and I know she really has headaches. And, it breaks my heart to even think that she will have to live with this disease. I hang on to the hope that hers was caught early and she will not have to suffer like Wesley.

I believe that God has put Wesley through this so that we could be more educated for Kyra. You know sometimes God works in strange ways, but like Wesley always says, " he would suffer anyday over his kids having to suffer".

For everything that was written in the past was written to teach us, so that through endurance and the encouragement of the Scriptures we might have hope. Romans 15:4

I do ask everyone this, do not worry about us. We will have a Merry Christmas and we will be ok. I promise. Just continue saying your prayers for us, as they keep us strong. We can feel all the prayers and love. Goodnight!!

Shunt Revision

Wesley will be having surgery Dec. 28th. I will update more later. :)

Home Sweet Home

We are back in the great state of Texas. I do not think I have ever wanted to be home so bad. The kids were so excited to see us. We had a welcome sign on the door and many kisses and hugs. I was quick to see that it was back to reality. But, thats ok I missed all the noise!
We flew back in early this morning. I did not post yesterday because we actually decided to get out and see downtown New York City. We decided it was not going to do any good to sit in the hotel room and stare at the walls. It was a "yuck" day. Lots of rain that ended up turning into snow. It was COLD. But, we did see a few things.

These pictures are all from Ground Zero. So sad. I just stood there staring at the holes in the ground; speechless at what all those poor people went through. The museum brought all that to reality. Very Sad! But, so glad I saw it.

A window from one of the planes!

The biggest piece of glass that was found!

One of the firefighers lost; Actually Uniform.

Many Lives Lost!!

The weather got so YUCK that we did not do a lot. We did walk around Time Square some and did some looking.
We saw the Famous Christmas Tree!

Look at all the snow!


So we are home safe and sound! Tomorrow we head down to Dallas to see Wesley's neurosurgeon, discuss everything that was said from New York and I think he will be having a shunt revision fairly quick.
Let me leave you tonight with some Holiday Cheer!!
Here are my Candy Cane Twins!!

To Explain..

I know you all have a lot of questions. Lots of positive came from today, it really did.
** Dr. Bolognese (NY Dr.) is one of the Top Dr.'s in the US. He makes 8.2 million a year, so you decide. HEHE. But, anyhow we learned more with him in four hours then we have in two years.
**If we would had not went to New York, we would have not known about Kyra.

What has happen in the past we can not change. Wesley had a complication from surgery. The Dr. decided for what ever reason instead of opening him back up and fixing the patch he put in a shunt. Dr. Bolognese's guess is that he thought it would cause more complications by opening him back up. But, what that means now is Wesley's life now depends on his shunt and this is forever. But, we can not change that. Nothing can be done.
I hate to say, but I am a lot stronger then Wesley and he is not taking this well.
His shunt needs to be revised and it will need to be probably once ever two years, because his vesticles are so small.
Why not get this done in New York? Because we would have to come up here everytime, and because of cost and our insurance is out of network. It was $550.00 just to talk to him today.
Shunt revisions are not as big of a deal. So Wesley can continue seeing Dr. White in Dallas which we really like.
Dr. White's nurse called me this afternoon and he wants to see him Monday at 11:30. I have a feeling this shunt revision will be done pretty quickly.

As far as Kyra. I have no clue why they did not see this already on her MRI. Dr. Bolognese's stated that he felt like they were looking for the Chiari and missed the "spot" and the fact that her brain stem does not look right. He said the Chiari right now is mild and thats why they probably did not see it. But, she is only four and Chiari in MOST people gets worse with time. And, she is already showing signs. The "spot" he thinks has to do with her Pituitary Gland. Which she may have a growth problem. There is a syndrome he is worried about too that goes along with Chiari. So, Kyra has several test and Dr.'s that will need to be done. I have called our family Dr. and he is seeing me on the 14th to discuss all of this and get tests set up.

This about sums it up. All I know right now. I have to stay strong. I have too. Now more then ever for Kyra. I just feel like the world is on my shoulders. We tried to get an earlier flight. We want to come home. But, we are flying out EARLY Sunday morning. Not for sure what we will feel like doing tomorrow. Everything is so expensive here.

I really appreciate everyone's prayers!

Bad News

I have calmed down a bit and will try to explain this the best I can.

First Wesley.. After he had the Chiari surgery and then a month later got so sick. What happen, is he had a complication from surgery. His patch in his brain started to leak CSF fluid. Instead of the Dr. going in and fixing it (like he should had), he put a shunt in. Now 18 months has past and it can not be fixed. This means, his life is dependent on his shunt. He has very small brain ventricles and because of this his shunt will mess up probably at least once every two years. Hints, why he is so sick again. He needs a revision. There is no need to get it done here. Because of cost we would have to continue coming back. So a call has been made to Dr. White in Dallas to get Wesley back in.

I chose to take Kyra's MRI to show the Dr. just to make sure. Kyra does have Chiari. Over time it could get worse, we do not know. Since she is already showing signs, chances are very high. There is also another spot on her brain that has to do with her Pituitary Gland. There is also another syndrome that she may have that goes alone with Chiari. She has a number of tests that need to be ran. I already called her Dr. and I am seeing him on the 14th to discuss everything with him and get her to Children's Medical for testing. If and when she does have to have Chiari surgery I would be bringing her to NY. For all other problems could hopefully be cared for in Dallas. We are looking at many issues. Growth problems, scolosois, on top of Chiari.

We are broken and so upset. Wesley has not said two words. He is very depressed and do no know that he will be able to continue working unless something is down with this shunt or he gets better. I feel like I just do not know what to do anymore. That's about all I can say right now. We are very upset and worried about many things. We are trying to keep our faith so bad, but it is hard to understand Why. Why Kyra? Why my Kyra??
Kristy

Costs And People

I am a very tight person with our money. I am the coupon queen, I save any penny I can. Sorry, thats how I am. Ok, things are just to expensive here. I mean how do people live.
$10.25 a person to see a movie.
$50.00 to eat at a cheap place.
We saw some signs for houses that were for sale. For a house our size. 4 bedroom 2 bath, not even as nice as what we live in now. $885,000. WHAT? There were a lot of the houses over a million. How do people live here? Where do they work? It is just more then my brain can wrap around. WOW.

Does anyone smile here? Well, I have maybe found one person that does. No one is friendly. And, oh my gosh do they get in a hurry. I almost peed my pants in the taxi. No one believes in stop signs here either. Crazy!!

Tonight we just stayed local and walked to a theater which was very close and saw the Blind Side. Very good movie. I think I am even closer to my decision that I have been trying to make.
Sandra Bullock reminded me of myself in many ways. I LOVE helping people. I LOVE people. I got a Social Work degree for this reason. Well that was a big reason why I did. I have been trying to decide what I am going to do when Wesley gets better. Do I want to work in Social Work and go back for my masters or do I want to teach. As much as I think I would love teaching as well, I think my heart is in Social Work. Even know I would change so many kids lives by teaching, I think Social Work is where I need to be. I am going to continue praying about it. But, this movie really made me think tonight.

Wow...

It is so different here. I have been to downtown NY about 13 years ago. I do not remember much, but I am just not liking it here. Sorry, thats the truth. We have not went downtown yet. We are actually on Long Island. We figure after the Dr. tomorrow and Saturday we are going to go downtown. I may like it better there, but I just feel lost. We did not rent a car, so we just feel stuck. The taxi's are so expensive and the bus is ok. We have experienced both so far. We may take the train to downtown. There is no subway here in Great Neck.
I get home sick very easily. I am already home sick. I miss the kids bad. They miss us.

The day started with us leaving the hotel.


Here is our hotel. Home away from home.
Someone had the ideal of walking, (yes that would be me, I will admit). I am so tight and I wanted to save money. Well, bad ideal. LONG WALK.
We had to stop for a break. Yes, we are out of shape.


Here is where we stopped. A nice little park. It was beautiful here today. Temp. was in the low 60's and just felt amazing. As we were sitting in the park I saw a squirrel and it was grey. A grey squirrel. Ok, I was amazed by this. Did you all know there were grey squirrel's? And, no I wish I would had gotten a picture, but I did not.
But look what I did see. Check out this mailbox!

We finally got to the hospital. Here it is!!

Today was tests. Not as many as he should have had, thanks to insurance. But, we can only pray that it is enough. Tomorrow is the big day :)

Beautiful Day

It is beautiful here today! The temp. is in the 40's and 50's, but feels nothing like home. When we got here, Wesley had to put a short sleeve shirt on. We are getting ready to go start tests. Well, I should say Wesley is getting ready. I will be along for support. He will be in testing until around 4:00. So we may go see something pretty tonight if he feels up to it.
The kids are better. Kyra had a rough time last night, really missing me. But, things were better this morning.
The subway system runs right behind our back window, so we get to here a lot of that :). Not to bad.
Will update later.

We Made It

Hello New York. We made it.
Everything went smooth this morning and we drove to Wesley's second mother Lisa's in Little Elm. She took us to the airport.
As we got closer to the airport we had time to eat so we all chose a place called Cutie Pies Bar-B-Q. We were thinking, yummy, that sounds great.
We walk in and the waitresses were barely dressed. Hints, "Cutie Pies". All you saw were boobs and bottom. 10 times worse then Hooters. It was so funny. I could not help but laugh. Wesley probably enjoyed the meal, but it was a bit uncomfortable for me. They should had just been naked you could see everything anyway. Ugh. It really goes all over me at how a resturant would have their waitresses dress that way to get business.And then the girls that are willing to dress that way. Then I watch all the men barely eatting their meals because their eyes are feasted on the waitresses.

Everything went very smooth at the airport. No problems with check-in, and no flight delays. Even know I did a lot better then what I thought I would, flying is just not my cup of tea. It just scares me. It was a very bumpy ride for whatever reason. I even jumped up from my sleep one time and grabbed Wesley. But, overall it went well. Sorry, I am just not going to be one of those people that love to fly.
I set and watched all the people that you could tell flew all the time for business. I found myself, just wondering what it would be like to be in their shoes. I also found my mind wondering off and thinking about all the people on the flights on 9/11. What were they thinking? I just can not imagine.


Here is our view going UP UP UP!

Here is what I did most of the time, thanks to the motion sickness medicine.

Landing in NY.
We had a taxi service pick us up. I have already figured out how different things are here.
We walked across to a Subway by our hotel for dinner. Wesley says as we are checking out, "I would like 3 cookies, they are 3 for a $1.00, right"? The man just looked at him and said no "1.50". BHAHAH. So far everyone has been pretty nice, besides our taxi driver. I was quit scared at his driving,lol.

The kids are good. Kyra has already had melt downs and really misses me :(

Wesley did a lot better then what we had feared. He is worn out and is already alseep, he only slept two hours last night. Hopefully he gets some much needed rest. Tomorrow will be a long day. Lots of testing. We made it, praise God and so far so good. Will give you another update in the morning. Goodnight All.