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.

Pumkin Carving

I know it has been several days since my last post but life in the Rice family has been busier than normal since I had a mid-term to study for. Now I beleive that life is starting to get back to our normal busy ( whatever that is). The good news is that I passed my mid term yahhhh!!!!!!!!!!!!
We started carving our pumpkins finally last night and so far have only got 2.5 done.
Conrad wanted a vampire and Nikki just wanted a face so we got both of them finished. I wanted a 2 diminshinal rose so James is currently working on that one it is turning out really neat I will try to post pictures when he is finished with it. After that one I think we only have a couple left.
Last Sunday we went to Trunk or Treat at Nikki's school which they do every year.
They usually have a chilli contest (which I think I may enter next year we'll see), a costume contest and of course trunk or treating.
It is a really fun time for the kids. Nikki was very excited when she won first place in the costume contest and that just made her day, and mine to because this means she will let me make her costume next year. She won a pumkin and I guess you would call a lite brite kit for the pumkin it is really neat I had never seen that before.
Conrad is his normal onery self, he decided tonight that he was going to pee in the trash bag that we had put pumkin yuk in, mind you it was on the front porch, I'm sure the neighbors got a good laugh out of that.
He had me choking on my dinner tonight I was laughing so hard I had to leave the table. We had just sat down to dinner

CJ: where is my water

we of course give no response when he demands since he knows the proper way to ask.

CJ: I'm still waiting for my water ( which he repeated several times)

He eventually asked please dad may I have a glass of water so James got up to get him some water and accidently put it in front of Nikki and his response was:

CJ: did you just never listen

He is so so funny sometimes I'm not sure how he comes up with some things. We were trying to figure out what time his halloween party is tomorrow so we asked CJ if he knew what time his party started and he stated in just a minute. I think we might be saying that a little too often.
My kids are so amazing they are like night and day in personallities and it is so much fun watching them grow and learn about the world around them.

Breast Cancer Awareness

I was sent this video from a friend and was so amazed that I had never heard of this before especially since I go to my well woman visit every year. I have do not know anyone who has or has had breast cancer but beleive this is something that every woman should know. Please pass this on to every woman you know. We may not be able to know about everything, but knowing something helps us prepare.

Parent Teacher Conferences (Again)

Today was CJ's turn for the parent teacher conferences and he is doing just great. He is also doing things we had no idea he could do, like eat!!! Boy does he have our number. Although he is still not eating much he is eating more and that is very exciting. I guess that at snack time he is eating almost all of his snack (if it is crunchy) and usually drinks his whole pint of milk or at least 2/3 of it, but at lunch they said he seems kind of lost (maybe too much food at once) so they are going to try giving him one kind of food and expecting him to finish what they give him during the lunch hour.
This got me to wondering why he does so well at snack but not at lunch time. And my conclusion was that he gets his tube feeding at 10am and it takes 45minutes to dose out his required amount, he would then usually eat again at 2pm but because I am not comfortable with the school feeding him we chose to move his 2pm to 3pm, after school is out.
Lunch is at 11:30am which he has just finished eating 45min prior to lunch so he is not hungry which would explain his disinterest and snack time is around 2:30 pm, 4.5 hours later so now he is hungry.Are you confused yet? I think I might be.

I wish there was some way that I could not feed him during the day and only feed him at night. I can't help but wonder if this would make a difference in the amount of food he ate. The problem with feeding him at night is bedwetting. He soaks through his pull ups now and if we fed him a full day’s amount at night then we are afraid that he won't sleep much. I don't know what to do! If someone has that book let me know because I need it.

I may try this theory out on the weekends when I can devote more of my time and we'll see if it makes a difference.
On the other hand he has mastered or is emerging at most everything and can take one step down stairs without support which is just awesome. His gross motor seems to be improving allot we are so proud of him. Keep up the good work Cj we are so proud of your accomplishments. We love you so much. XOXOXOXO

Powell Pumkin Patch

The Powell Pumkin Patch is an annual tradition of ours we always have so much fun. We tried to change our tradition this year by going to the KC Pumkin Patch in Gardner, we heard that it had all these activities for the kids and was so much fun that we just had to go. So we did.
It was so crowded which being closer to the city we kinda expected this, but what we didn't expect was that on top of the price of the pumkins we had to pay $6 per person (even Cj) to just get in and this did not include the pumpkin which would have been an additonal charge (they charged by the pound.) CRAZY!!!!! I looked at James and said no-way. It was crowded and much to expensive. We talked about it for awhile and decided that it just wasn't for us, we are much simpler people than that. I think people forget the reason behind holidays and they try to market it too much. Our kids only wanted a pumkin not all that other stuff not that it wouldn't have been fun but it wasn't why we were going to the pumpkin patch.
Needless to say we chose not to go there since it was so commercialized and drove back to Louisberg to Powell's Pumkin Patch. We had a blast it wasn't crowded and the kids had so much fun trying to find the biggest pumpkin they could. After everyone got their pumpkins we went and played in the hay maze, climbed on the tractor tires and hay bales and just had simple fun. Nikki had her best friend Lilly with her and they laughed and gigled the whole time. Besides that we got 4 very huge pumpkins for less than it would've cost to just get into the other park.
We will never go anywhere else again (lesson learned).
On the way home we also stopped at the Louisberg Cider Mill and watched them make fresh apple cider and donuts (which we had to sample). It was an awesome day.
Next weekend we are going to go to Cedar Cove also in Louisberg for their Halloween Cat Walk kids 6-12 are only $2 and under that is free and adults are $5 they will get to tour the park and see the tigers and trick or treat.
We are really excited about seeing all the tigers, we have never been there so maybe this will be a new tradition for us.