Lets Luau

Today was Nikki's 7th birthday party and I think it turned out to be a success. On top of having a turnout of 14 friends she also had a surprise guest, which turned out to be another best friend Tori. They had moved to western Kansas a couple of years ago and we just found out a couple of days ago that they have moved back into town, and we are all so excited. It was so great to see them again. Well as you can guess from the title we had a luau and it was so much fun. I made a cupcake cake topped with the blue ocean and sandy beach (ground icecream cones). For the Hula girl I used one of her polly pockets and stuck it in a cupcake that I had put on the top of the cake. I made the grass skirt with a grass decorating tip, and for the blanket I used a grahm cracker and stuck an umbrella over it, the grahm cracker had pink frosting with a number 7 wrote out in decorating flowers. We had also found a barbie ball in the toybox to add to the scene. It turned out really cute. We also played many games including the limbo,volleyball and monkey in the middle, we also played a stop and go game. To add to the beach scene we had some beach boy music playing in the background which helped put everyone in the mood to boogie. I love having birthday parties for my kids, it is so much fun watching the excitement in them build as the party comes together. I asked Nikki what her favorite part of the party was? Her comment was that she was able to play with all her friends. It makes me feel proud to know that she has such a loving heart, she is such an amazing person.
Nikki I love you so much and am so proud of who you are. I never knew a love so deep until the first time I held you in my arms, it was such an overwhelming feeling that I cried tears of happiness, it was so wonderfull to finally be able to meet you. I am so proud to be your mom. I hope that all your wishes come true. xoxoxoxo

Happy Birthday Nikki

Yep!! We are celebrating Thanksgiving today as well as Nikki's birthday, and I can't beleive that she is already 7. Born at 27weeks gestation she weighed a whole 2 pounds 13 ounces. I remember the doctors telling me that she had less than a 5% chance of surviving until birth. I suppose she fooled them. When she was born she was only on oxygen for less than 24 hours and only went forward from there. I don't remember her having any steps backward when she was in the NICU and I had to beg the doctor to let her go home early because she had reached her goals with everything except her weight. The doctor did agree to let her come home but made the comment that they did not usually let babies go home before they reached what would have been their due date. She came home only weighing 4 pounds 2 ounces. I remember the car seat just swallowing her. She was only in the hospital for 7 weeks when we came home on January 11th 2002. She has turned out to be such an amazing person. She loves everyone and just has a pasion for life. Her teachers always comment that she is like a sponge and just absorbs everything. She has always been determined and head strong and will stand her ground I suppose she learned to be a fighter at early age. I am always amazed at her and love watching her grow even though sometimes I wish she would slow down a little and let mom catch up.
Nikki,
I love you so much and feel so blessed to have you in my life. Your toothless smile just brightens my days and nights. I love who you are becoming and hope you never loose the child you are today. Watching you grow and learn has been nothing short of amazing. I love you always and forever. xoxoxoxo

Happy Thanksgiving

Happy Thanksgiving! I hope everyone's thanksgiving turns out to be wonderful. When I reflect on what it is to be thankful for there is so much, but I must say that I am most thankful for my family and the gifts that they give me every day.

Las Vegas and the Hoover Dam

We're Home

CJ did so great today I am so so proud of him although we both did allot of crying. I thought it was horrible. James said that it wasn't as bad as I think it was but I beg to differ. While we were waiting I asked CJ what kind of day he was having and he replied a bad day since he wanted to go home. It was really hard leaving him with the nurses this time (the worst). When the nurse showed up to get him he took one look at her and said oh no. I felt so sorry for him. While he was in surgery they put a very large tube with all the probes down his nose through the esophagus and into the stomach. This of course was to monitor his esophagus while he swallowed, it also had several ports that dripped water to also measure the motility. They also removed his mickey and put another large tube with probes through the hole from his mickey into the stomach and about 3-6 inches into his small intestine (I'm not exactly sure how far it was). This would test the motility of how his stomach digests food and then empties into the sm. bowel and also the motility of the small bowl. After we got back to our room from the O.R. we met with the RN who would be staying with us the whole time and the Doc who would be in and out. This was a 4 part test first they hooked each probe from his mickey(8 of them) to the monitor which would measure different waves of the stomach and sm. Bowell while fasting (part 1). I may have to have James post one day to better explain.
This test only took about 2 hours instead of the predicted 5hrs. since they saw what they needed to see early. I was really excited about that since CJ pretty much slept through all of it.
His stomach processed the food and emptied in the correct rhythmic pattern that it was supposed to as did his sm. intestine. After this fasting test we were then supposed to feed him his regular bolus feeding to see what happened when he had food in his stomach. This is when it got horrible for me because he finally started really waking up and realizing that he was hurting and that the tube in his nose hurt really bad. He was crying saying that he wanted to go home and then he would point to his nose and just scream owe over and over. It was horrible. The doc felt bad for him at least and let us do the testing out of order. So we finally got CJ to calm down and went to (part 3 & 4) of the tests which was testing the motility of the esophagus. First he had to dry swallow a few times with the port going down his throat dripping water which he hated and started screaming again so they had to turn the water off. Then we had to get him calmed down again to get him to wet swallow by taking a drink. He had to do this 12 times. He did such a wonderful job and took good big swallows we were so proud of him and thought that we were finally done and could take the tube out. Then the doc said that the tube was not placed right and needed to be pushed down in order to measure the pressures by his fundo. This was horrifying not only to CJ but to me. It must have hurt real bad because he was screaming so bad. I had never heard him scream like that and I started crying and James told me I needed to step out and calm down. I realize that my getting upset wasn't helping the situation but I was not leaving him for nothing. They finally got good enough results and was able to pull the tube out. What a relief for us both. They then finished the other test which was to watch his stomach pressures while he was eating. After all this I am not sure we are any farther ahead than we were. Although we now know that the retching is not because of his stomach or intestine we still don't know what is causing it. The swallow part of the study did show that he was having some kind of problem swallowing because he always double swallowed but what is causing the double swallowing could be a number of things. The doc wanted to study this a little more before he gave us final results. Hopefully next week some time. I thought it interesting though that he mentioned it could all be a result of his FUNDO which has been a concern of mine all along. I am glad that we did the tests in the sense that we were able to delete some possibilities as to what might be going on. On the other hand I am so sorry for him to have to go through all of that and still not have any answers as to why he retches so bad. Maybe there will never be an answer, and this I suppose is hard for me to except when I have to watch him retching and gasping for breath and not be able to do anything to help him. The doc mentioned doing other testing to find out why he double swallows and what is going on with that but I can't do it any more. I'm not giving up on him and I would never do that but at the same time I can't put him through more pain that will not deliver any answers. I think we will re-evaluate the situation in a few years when he gets older maybe the only answer is more time. As the saying goes only time will tell. As for now I love you so much CJ. I will always be here for you and will always do what I have to do to help you move forward in life. You were so brave today and did such a wonderful job. Mommy and Daddy are so proud of you. On another note he is already back to his sassy self. He asked to watch a movie that I don't care for, so when I told him this he replied with you don't have to watch it. I love my children so much they amaze me in so many ways every day. Well hopefully this makes at least some kind of sense. I have been up since 4:30 this morning so I feel as though I may have rambled since my thoughts seem scattered, so I am going to head out to pick Nikki up from dance and then going to bed.

Getting Ready

CJ had pre-op this morning and all is a go he did really great and he didn't even have to have blood drawn YAH:). We went up to the GI clinic first thing to review and go over the procedure again and I was so glad that we did because it has been so long since we had talked about it that I thought maybe I was missing or forgetting something, so I was glad to be able to ask some questions about how the day would progress.
We are scheduled for 6:30 am. YAWN!!:) I am not looking forward to that since we are an hour away and of course they want you there early.
I suppose the good thing about it being early is that we will be first so hopefully we should be on time with no delays.
I did decide to talk to CJ a little about tomorrow and he is naturally a little nervous about the whole thing (which he has a right to be) but the sleepy doc let him pick what kind of air he gets to breathe out of the mask, which apparently they have different scents like bubble gum, strawberry,banana etc.... so he chose the bubble gum and is kinda curious about what that is all about so I think this helps a little.
I also let him know that he would have to be brave and go with the nurses by himself because mommy and daddy aren't allowed in the room because the bubblegum air that he breathes in the mask was magic air only for kids. This seemed to appease him and his only question was to make sure that we would be on the other side of the door waiting for him.
I am not as nervous as I was although I still do hope that I am not putting him through this for nothing.
They did say that we would have results that same day after all the tests have been ran. So I was happy for that. We will be inpatient for the tests and they told us to plan on just being there all day so I will post how things went as soon as I can.
Please say a prayer for CJ.

Upcoming Surgery

Well I know that I said I would explain more about CJ's upcoming surgery and then forgot so here it is.
This coming Friday CJ is going to have an esophageal monetary (spelling?) we were planning on doing this earlier in the year and after talking with his surgeon we decided not to go ahead with it due to the fact that if they are to find a complication that he was not sure that it could be fixed surgically.
Then last week GI called and said that they had spoke with the surgeon and they had decided that it wouldn't be a bad idea to go ahead with the surgery, and so it was scheduled.
The reason we wanted to have it done is because he wretches really bad every time he eats and it doesn't matter how slow it doses or on the amount he is getting. He is now also chewing food but will not swallow because he chokes on most everything so he just ends up spitting the food out (gross).
So here I go scheduling this surgery nervous about whether I'm doing this selfishly because I don't want to put him through something when there is no cure in the end. Then I think that what if I don't do this and there is a cure in the end, or maybe we will get enough knowledge in order to help him more.
The test they are going to perform are going to give us information on how his esophagus,stomach, and intestines process and digest food, or in his case liquids. He will go into the surgery room and of course be put to sleep then once asleep they will put a scope with a wire down his throat to the small intestine. They call this wire a motility wire and it does just that, check for motility. The wire has 8 ports that send fluid simultaneously to see if the sm. intestine is working properly by squeezing the ports in a specific order. I also believe that it checks the motility of the stomach and esophagus. He will wake up with this wire in place and will have to have it in for several hours, they will then perform several test and then back to the operating room to have it removed.
We already know that CJ has some reflux and that his stomach empties a little slow into the intestines but we were told that it was ok not to worry about it, but I can't help but feel like there is something that we are missing.
Needless to say it is going to be a long day for all of us especially for CJ. I already know that if there is no blockages that the only thing that may help if he does end up having motility problems is medicine. ( which they won't put him on without these studies) so once again I just hope that I am making the right decision by doing this, I can't help but second guess the procedure and whether or not we should even be doing this.
Please keep CJ in your prayers for Friday this will be out patient, so as long as no complications arise we should be home that same night.

We're Back

Vegas was so much fun! Although the trip was not long enough, we wished that we could have stayed for at least one more day. We were excited though to come home to see the kids.
We were kinda feeling like crummy parents because we were never able to make it back to the hotel room to read to them at bedtime.
Vegas is two hours behind us and the casino's are massive, we had decided to stay at a hotel about 7 miles from the strip because it was cheaper and nicer than most of them on the strip.
The only downside was that it was not on the strip. So therefore we had to shuttle from the hotel to the strip which wasn't bad since it was complimentary but we would always get lost in the casino's trying to find our pick up spot and confused about what time it was.
We had to laugh because it always took us about 45 minutes or longer to figure out where we were going in the casino, it also did not help that when you would ask the casino employee's for directions they would actually give you directions just not the right ones since they had no idea themselves. We learned who to ask and who not to ask quickly, by the last day (of course) we were able to walk right to it. So needless to say we rarely made it anywhere on time, at least we had cell phones so we were able to at least call the kids at bedtime and tell them goodnight.
We did tour the Hoover Dam ,which to be able to walk across the dam was just amazing. It is so massive that it takes your breath away at it's beauty.
I have driven over the dam but never stopped so it was really exciting to be able to share the experience with James.
We didn't do a whole lot of gambling while we were there, we feel like we work to hard for our money to just give it away but with saying that we also did not win anything. We walked the 4 mile strip literally which I suppose by the time you also zigzag around the casino's it ends up being more than 4 miles but who's counting. All we know is that our feet and legs were killing us the next day when we did about half of it again before we got smart and starting riding the Deuce which was a double Decker bus.
On the last day we were there which was also James's birthday we got all dressed up and went to New York New York to Gallagher's for dinner then went clubbing to Coyote Ugly and then ended our evening with a show (Rodney Carrington) this is one of James's favorite comedians.
All in All we had a great time. It felt good to just reconnect as a couple and not just as mom and dad.
We always try to take a short trip just the two of us every year on our anniversary, we usually just go to Branson for the weekend. We hadn't done that this year yet and we both felt as though it was over due. It feels so good to be able to reconnect with your husband even for a short time. I think it helps you to remember that there is more to your relationship than just activities, dinner and bedtime at 8.
I love you so much James, I hope you had a great 40th birthday. You are the greatest husband and father and I hope you know that I appreciate all that you do for me and our family.

Happy Halloween

Halloween this year has been so much fun!! Both of kids really got into it this year! We went to the Paola square first and let the kids trick or treat the shops then just drove around to some friends houses that we visit every year. By the time we got done tonight the kids were wore out they didn't even go through their candy, they just went to bed.

Nikki was our bathing beauty the balloons were her bubbles we had a bottle of bubbles and a zest soap box that we hot glued onto the tub, we also spelled out the words rub a dub dub, she was so proud of that costume and absolutly loved the comments that she got.

Conrad was a power ranger and although I don't have any idea what a power ranger is he seemed to know. I did ask him if he knew what a power ranger was and he said yes that he watches the cartoon at grandma's. At least one of us knows. I was actually surprised that he liked the mask because he is generally really sensitve about things on his face.

CJ is actually going to be going in for surgery in a couple of weeks again (nothing serious) but I will post more on that later, hope everyone had a great halloween.