The Rice Family

2010-01-04T22:22:00.001-06:00

Slumber Party

2010-01-04T21:26:00.002-06:00

Yes I am going backwards in time once again. This time only since November. Nikki is now 8. It's hard to beleive they are growing up so fast. For the birthday party she decided to have a backwards birthday party so we did everything backwards by starting with the presents and ending with the icecream and cake. We even ate under the tables instead of on them and I made ice cream cake cones and we ate ice cream on plates with a fork. Needless to say it was allot of fun and we all laughed and got totally confused allot. We decided this year ( or last) that we would allow Nikki to have her first slumber party. It was allot of fun. She had 4 girls spend the night. Poor CJ! No actually he was right in the middle. We put on make up and beleive it or not it was warm for the first time on November 28th,So we were also able to roast marshmallows and make smores in the backyard. Yummy. All in all I beleive it was a sucess. The girls actually started falling asleep about 10 so by 11pm they were all out. The next time though we will make sure there is an even amount of girls the odd number made it hard for some of the activities.

Flu....Ughhhhhh

2009-10-22T20:43:00.002-05:00

Looks like the ER visit brought us more than just a few stitches. Last Sunday I came down with the flu. Yuck.. At least it is just fever and nothing else. To make it worse though my boss was on vacation. I work in a very small office which means I had to be at work. So with a fever of 100 to 103 I went to everyday for 8hrs each day. Still not sure how I managed that one. He did come back yesterday though so I took the rest of the week off. I am finally feeling better today. The bad news is that everyone else now has the same stuff. We did take CJ to the doc and he gave him the H1N1 vaccine just in case since he is high risk. Other than that there is not much we can do. Just wait it out. I did however stock up on Tylenol and Advil.
CJ got his stitches taken out last Tuesday he didn't think much of that. We also had to make an appointment with neurosurgery because he has had a headache for the last two weeks and this makes me a little nervous since he does have a shunt. I have never wondered about his shunt until now. I suppose we should have it checked out, his appt. is next month so I will keep you updated. I did start measuring his head once a week and so far there has been no change so maybe it's not his shunt after all. who knows.

ER Visit

2009-10-16T21:57:00.002-05:00

Well CJ had a visit to the ER last night. Poor kid. We were at the school for a PTO meeting and the kids were out in the hallway playing and had been for about 45 minutes when I hear this horrid screaming. I knew right away that it was CJ. He had been running in the hallway and fell. He came walking into the teachers lounge where we were having the meeting and I could see the blood down his arm where he had wiped his chin and so I think that freaked him out as well seeing the blood. I picked him up and took him to the bathroom to clean him up and try to get him to calm down so I could see the damage but knew it couldn't be good. One of the mom's there is a first responder so she came in and took a look at it also but there was no doubt he needed stitches because you could see that fatty tissue that is under the skin.
Well as you can imagine the ER was swamped and I was so paranoid about the germs because there were several people that were wearing masks. We sat in the waiting room for about 2 1/2 hrs before finally going back. The doc as well as the nurses were kinda rude to top things off. Absolutely no bedside manners. The nurse didn't explain anything about what was going to happen she just brought everything in and got ready. We (the nurse and I) of course had to hold him down to get the stitches in. It was horrible he was screaming the whole time. The doc came in and out never saying even boo to us. Didn't even introduce himself thats how bad it was. I guess we are kinda spoiled with the care we get from Childrens Mercy.
Well needless to say he ended up with 3 stitches and calmed down rather quickly when it was all over. As we were waiting for the nurse to come back in to give us our instructions CJ made the comment that he wished it would have happened to his sister instead of him. I told him that wasn't a very nice thing to say. And he said I know but it was really scary. :( I had to laugh a little but felt so sorry for him that he had to go through that. We did talk later though and I asked him if it hurt when the doc was fixing his ouchie and he said no so that made me feel a little better that the screams were fear and not pain.

2009-10-11T20:22:00.001-05:00

2009-10-08T21:34:00.002-05:00

Getting ready for a ride.

Nikki's mud socks and gloves.

Looking for crystals.

Mom.

2009-10-08T21:24:00.002-05:00

Cj waiting to go for a ride.

Nikki and Angelina resting in the shade for some

craft time.

My dad decided to have a water fight with the kids

he realized very quickly that he was out numbered

The water is about 40 degrees. Very cold.

Dominque. Cindi's (my little sister) her oldest.

Nevada Trip

2009-10-08T21:03:00.002-05:00

Ok, so where did I leave off......Oh yeah!!! Well we arrived in NV 9 hrs after leaving CA. It was great. The kids I think though thought they had entered a whole other world. My mom and dad have some land that they camp and gold mine on about an hour outside of Elko, Nv. ( I grew up in Elko). This is where we stayed for the next 10 days. Camping. Of course when we first go there the kids weren't quite sure what to do and when they asked what there was to do we said whatever you want. Well this got them excited for a moment and then they became concerned with getting lost. We all laughed and assured them that they would not get lost. We didn't do much while we were there and that was great. There was no phone, TV or anything electronic unless it ran off of batteries or gas. We did allot of 4-wheeling (every day) and the kids looked for crystals on the mountain side which are just clear quartz rocks but everywhere. They spent allot of time looking for those. As the days past they began bringing down whole rocks that had crystals in them and then spent many hours in the water hole washing them. It brought back allot of memories because my mom always had a rock garden and we were always looking for rocks to put in it. Of course our rock finding days are over but mom still has a rock garden which now has new rocks in it. The kids also played in the mud and made not just mud pies but mud cities. It was so much fun just doing nothing. We cooked every meal over the campfire and had smores every night. We can't wait to go back. Although mom and dad might not feel that way since they are used to it just being them and then here all of us come...My older sister Serena also got engaged while we were out there so that was amazing to be able to be a part of that. Not allot to post about the trip we just hung out around camp sometimes not showering for a couple of days I think there were days I didn't even brush my hair and one day I just stayed in my pajamas all day. It was definitely a trip of lots of memories. We had no worries...acunimatata.

2009-09-26T00:27:00.000-05:00

2009-09-26T00:22:00.000-05:00

2009-09-26T00:00:00.000-05:00

2009-09-25T23:58:00.001-05:00

2009-09-25T23:53:00.000-05:00

2009-09-25T23:46:00.000-05:00

I'm Back

2009-09-25T22:13:00.006-05:00

Wow!! I didn't realize it had been so long since I updated. I mean I knew it had been awhile but not that long ago. Sorry.... Well as you can imagine so much has happened between then and now so I will touch on a little of all of it and then I want to post a bunch of pictures. Well lets see. CJ is still eating like a champ. He eats better and better every day. We are only giving him one to two cans of formula a day and he is eating the rest by mouth. We of course are very excited about this. The doc no longer has us coming in for weight checks every month we graduated in Aug to every other month. He is still picky about some textures and tastes but we are working to get past those. Oh by the way that reminds me of something CJ did at breakfast the other day. He decided he wanted eggs so James cooked him some only he cooked them in sausage grease. CJ commented that the eggs tasted rotten. So James offered him some of his eggs (he eats them with the yoke runny). Of course CJ said yes so James gave him a bite and he instantly started retching and gagging his eyes were watering. James asked him if he was OK and he shook his head no and said nasty oke. It was quite funny the poor guy.
Nikki did well in Branson at her dance nationals we had allot of fun. They had a parent dance down and we talked James into wearing a frog prince costume. It was hilarious. After Branson Nationals we worked for a couple of weeks then took off again to run a fireworks stand. The kids enjoyed this allot. CJ was really reserved about everything at first in regards to lighting the fireworks. It was so cute. He only wanted smoke balls and the little stuff. Now more towards the end we were having to check his stash because he was going for rockets and allot of the other real big stuff. Nikki wasn't quite so reserved she went right for the big stuff. She also decided to get brave and light firecrackers and then throw them. This was kinda hard to watch at first but I knew they were slow burning not black cats. I almost stopped her then James talked me into just letting her learn to do it because she is going to someday. I suppose I do have to let them grow up. It's just hard sometimes.
After fireworks we went to work for a few weeks then we had CJ's 5Th birthday party. It's hard to believe that he is already 5. He had a superman/pool party for his birthday it was fun only that it rained all day and we had about 30 people at the house. O well the kids thought it was awesome to be able to swim in the rain. We decided to wait on kindergarten though due to his birthday being so close to when school started. When we talked to his kindergarten teacher during round up she said he would be ready but boys generally do better when they start later because of maturity. He is really enjoying preschool this year.
After the birthday party (5 days later) the kids and I flew to San Jose, CA. to my sisters house. The kids thought it was really cool to fly in a plane and be above the clouds. CJ was quite full of questions about the plane which turned out to be quite funny. The first plane we flew in was a very small plane about 13 rows of two seats on each side. We were at the back of the plane with only one row behind us the kids sat together and I sat across the isle. Now behind us was a very very nervous person who mind you had never been on the plane before and everyone on the plane seemed well aware of this since the stewardess had to keep going back and answering questions for her. Needles to say her questions started my 5 year old to start asking his own questions. How high are we, what is keeping the plane in the sky, are we higher than the clouds etc..... OK lots of questions. Now the best part was when we were starting to land!!! Why is the plane tipping sideways? Because we are turning so that we can line up with the runway. Why do we have to line up with the runway? So that we can land the plane. Oh so that we don't crash. That poor woman behind us. Of course the whole plane must have been listening to his curiosity because they all just started laughing because I wasn't quite sure how to answer that last question besides yes dear so that we don't crash. What a ham......
After our layover we boarded our 2ND flight finally to California and thankfully with less questions since as luck would have it the same woman was once again an isle behind us. I did realize on this flight just how much we take for granted. Nikki had a window seat and was mesmerized by everything down below. I was reading and not really paying much attention we were getting lower to the ground getting ready to land when Nikki says mom are those mountains? I just stopped reading and looked out the window and almost cried. Yes those were real mountains. Not pictures or movies but real mountains. I grew up in the mountains and didn't think anything of it but she was fascinated. I didn't even think about how significant that moment was going to be for her. She had only ever seen them in pictures. I found that I actually had to remind myself that I needed to be excited about seeing the mountains and remember to point things out that I take for granted having lived in the mountains of NV. It was an amazing experience to see those mountains again only with new eyes.
It was wonderful seeing my sister and her family it had been 5 years since we had seen each other. She has 3 girls and a boy. It was even more wonderful to see the kids play together and get to know each other. We stayed in San Jose for 5 days. We went to Santa Cruz to the beach so that the kids could see the ocean. That was awesome. Nikki loved the waves and building sand castles and just playing. CJ on the other hand wanted nothing to do with the water. It was loud and cold. He just wanted to play in the sand.
After hanging out in San Jose for a few days Cindi and I and all 6 kids loaded in the van at 5am to miss California's AM rush hour. We headed to Nevada to our mom and dads. This was about a 9 hour drive. It went pretty well although I have to admit I forgot what it was like to drive through the mountains between California and Nevada.
Seeing my mom and dad was awesome. 5 years was just too long. James flew out and met us at mom and dads camp that Saturday and my sister Serena and her family came out also. We couldn't believe that our family had gone from 6 to 20. Well its getting late tonight and I have so much more to post so I will stop here for now and will post more later. I promise to post soon.

Getting There

2009-05-27T19:46:00.004-05:00

I thought that I would be able to blog every day and keep CJ's food diary here but as it seems that was a harder idea than I thought. CJ is doing really great eating and is continuing to get stronger at eating also. He is getting his meals down in about 30-45 minutes now instead of an hour or two and is starting to eat more. He will usually eat now a pancake or frozen waffle with butter & syrup for breakfast (his fave) and will usually eat the whole thing. We did find though that he needs to be awake for awhile before he eats and he eats better. For lunch he will usually nibble on various things his favorite would be sauteed mushrooms or raw will be fine if we don't feel like cooking them, we are trying to get him used to eating bread which is also getting better. Then for dinner we are still working on meats but he loves corn on the cob and will usually eat 3-4 ears at one meal. Thank goodness I stocked up last year but I have to break out the big pot just to cook corn for the 4 of us. For some reason he doesn't care for canned corn so ears it is. We tried the carnation breakfast milk and he did not like it. (bummer) that would have been a great calorie intake for him. He does however like ice cream bars as long as they are not chocolate. He is just doing amazing. I am so proud of him. CJ had a doctors appointment today to just check up on how things are going and the doctor was very pleased with his progress and said we could continue with how we are doing things. I was so excited to hear that because I have been so worried about his weight loss. He has only lost 3 pounds though in a month so that's not so bad I guess. He just looks so skinny. I was used to him having a little round belly and now its gone. :(. But none the less I am very happy that he is starting to eat.

Day 8,9,10 & 11

2009-05-19T22:06:00.002-05:00

I guess I didn't realize how long it's been since I posted. CJ's eating is still very up and down. Saturday and Sunday he didn't eat very much at all and wasn't interested in eating. I didn't write down what he did eat though so now I don't remember.(o well) I know he did drink real well and drank probably a cup of milk on both days. On Monday we started the day out about the same. I couldn't get him to eat any breakfast but for lunch he ate some pineapple and a couple baby carrots and then for dinner we had ham and corn on the cob and he ate a teaspoon of ham and 3 ears of corn. (AWESOME). I guess the best part was that he ate all of that so fast that he finished eating shortly after everyone else. Today (day 11) Grandma said that he ate well for her also. He ate 6 potato chips, 1 peanut butter cookie, 5 bites of pineapple and drank 3 juice bottles. He ate some other things also but James left the list at her house and he couldn't remember everything so I will edit more later. Now for dinner tonight he ate 4 mushrooms and 2 tablespoons of pork chops and 1 bite of broccoli. He is doing so awesome. I was able to talk with Heather a little about how her son started eating at the beginning and she said it was the same way so that made me feel better. I did get some carnation breakfast powder that we are going to try putting in his milk tomorrow so we will see how that goes I was going to start it today but the kids helped put groceries away and I couldn't find it. However James ended up finding it in the freezer tonight. (silly kids) Thanks Boeckman mommy for the tip. At this point I am willing to try anything. I love the suggestions because you just never know what might work.
Nikki is doing really great her last dance competition went really well and we will be going to nationals in a couple of weeks to that will be exciting. She had her first ponytail softball practice tonight and absolutely loved it. I was so glad. CJ start pre-tball next week so that ought to be fun. It looks like we will be spending Mon-Thurs at the ball fields though since Nikki and CJ's games are of course not on the same day. James just got back home on Sunday from a hog hunt down in Oklahoma and seemed to have a good time. The hog he shot with his bow and arrow was 246 pounds so he was happy. Me not so much since it is sitting in my foyer in a cooler because he hasn't had time to butcher it yet. (it will be tomorrow). We finally got the siding put on the house and they finished it up last week it looks amazing. James went up tonight and picked up the stone so they will be putting it up tomorrow. I can't wait to see what it looks like. All in all life is good.

Day 6 and 7

2009-05-15T21:22:00.002-05:00

I feel like I'm on a roller coaster constantly going up and down. Yesterday CJ did not eat very well again, for breakfast he ate 1 1/2 powdered doughnuts and then for lunch he ate a little noodles. Then when we sat down for dinner I just wasn't expecting him to eat much at all. We had chicken, green beans and butter noodles. When I put his plate down in front of him I sighed real big and he looked up at me and said mom I'm not going to fight you about eating tonight. ( What a sweet heart) as you can imagine my heart melted and I almost felt like crying but instead I told him that I thought that would be a wonderful idea.He ended up eating an 1/8 of a cup of noodles. Not so great but better than nothing, he was true to his word though and did not fight me. Well since he didn't eat very well I decided to go ahead and hook him up to his pump with him awake instead of waiting until he fell asleep. Boy was he excited. Unfortunately for me he loves his pump and the comfort he feels when he is hooked up. I am worried about his weight loss. Everyone keeps telling me not to worry about it, but I just can't help it. I just love and worry about him so much.
Anyways that was day 6 then for day 7 it started out really rough. CJ had a bowel movement some time during the night and did not wake up. So needless to say when I woke up the whole upstairs smelled really bad. He has been having accidents like this every night since we stopped the tube feedings I'm not sure why. Well needless to say I had to peel his underwear off him and stick him in the shower all before 6am. I felt so sorry for him and just hated having to wake him up so early. I tried to get him to fall back asleep but he wasn't having any of that.
Well after a little TV time and my shower I asked him what he wanted for breakfast and he said doughnuts again so we went and got some but he wouldn't eat them. He was crying and I was begging what a sight that was.lol. I even threatened to throw away his pump (that didn't work) . He did finally eat 1 3/4 so I was pleased with that but didn't hold out much hope for the rest of the day since he didn't seem to be in a very good mood.
WOW! Was I wrong, he ate really awesome. When I picked them up from grandma's she handed me a whole list of what he had eaten. I thought I was going to breakdown this has been making me very emotional. So throughout the day he ate 5-6 good sized mushrooms, an orange cream Popsicle, 7 slices of cheese, 5 bites of ham, 2 cups of watermelon pieces and since he did such a great job eating grandma took the kids to DQ and he at 1/2 of a small ice cream cone not the kiddie cones since grandma didn't realize they had those but a small, now that's allot of ice cream. Now for dinner he just piddled but that's OK. I was just so proud of him for eating so much throughout the day.
I know that sometimes I feel like I just want to quit but at the same time I feel as though if I quit then I will be quiting on him. A friend of mine reminded me of the time when he was on ECMO. The docs didn't really want him on for as long as he was, they said that 14 days was the max because anything after that would not benefit him but make things worse. On day 14 they tried to wean him and he failed and could not come off. I remember feeling devastated when they told us that we should think about making funeral arrangements because he probably wasn't going to make it. After talking with the docs we or they decided to keep him on for another day and it worked. He was on ECMO for 15 days and because of that extra day he is here with us today. With that she reminded me that we didn't give up on him or loose hope then so we could do this now because it would be what is best for him even though its hard, its not as hard as what we have been through. If that makes any sense. Well that's all for now please continue to pray for our strength. I think I am going to call it a night.

Day 5

2009-05-13T21:49:00.002-05:00

CJ is just a slow eater. We did not have a big day eating today. CJ did not once again eat very much. For breakfast he ate 1-1/2 powdered doughnuts, for lunch he ate an ear of corn, a Popsicle and about a 1/4 of a hot dog. Then for dinner he ate 1 bite of pizza and about 3 tsp of mac & cheese. I don't think he is eating very good but James just keeps reassuring me that it is fine and he will have days that he doesn't eat much. I weighed him today and he has lost about a pound which I guess isn't bad but we haven't finished out the week yet either. Hopefully we will start seeing an increase is his eating this next week.

Day 4

2009-05-12T21:41:00.002-05:00

I was not around for any of CJ's meals today due to the fact that I had to work. It sounds like he had an OK day eating. He ate for breakfast 1/2 a waffle and a few bites of cereal then for a snack/lunch he had some animal crackers an egg white and about 4 ounces of strawberry milk. Then for dinner he ate about a tablespoon of cottage cheese and about 6-8 bites of turkey and then some more animal crackers. It sounds like he just kinda grazed through the day. I feel kinda guilty saying this but going to work was a nice break not having to stress about trying to get him to eat I think I needed the break. I don't know how long we are going to do this, there really isn't a time line. James wants to give him 2 weeks. I haven't weighed him yet to see if he has lost any weight yet I will do this tomorrow. He started at 40.5 pounds. The doctors said that we will see weight loss the first week but then should see him start gaining his weight back by the end of the second week.
On another note CJ had his karate graduation today and is now a green belt with a white stripe. I am so proud of him he is just growing so much and never ceases to amaze me every day.

Day 2 & 3

2009-05-11T21:31:00.002-05:00

The last couple days have not been going so great. Although CJ is still eating a little he is not eating very much and has started fighting us about eating. I'm already tired, just mentally exhausted and feel like I just want to cry or scream or something, maybe I need to do both. Yesterday (day 2) he ate about 1 cup of cereal for breakfast which of course took all morning and we also bolused him some of his formula. Then he started getting cranky so we got him to lay down and take a nap about 11:30 am. With that being said he slept through lunch and woke up around 2:30 or 3 pm. and would not eat anything. Then for dinner he did finally eat a good amount of pork chops probably about 2 tablespoons which took almost 3 hrs for him to get eaten. Of course by then it was bedtime so he went to bed and when he fell asleep we tube fed him. We thought that if we waited until he was asleep before we hooked him up then he wouldn't know that he got tube fed at all.
Today on day #3 he ate his usual amount of cereal for breakfast and almost 1/2 of a long jon doughnut and then he went to school. He said he didn't eat anything at school so I'm not sure if this is true or not. For an after school snack I know he ate several Cheetos but then for dinner he ate 2 bites of fish and a tablespoon and a half of peanut butter. Other than that he just cried because he didn't want to eat or he wasn't hungry or he just cried and said that he couldn't do it. I know that to wean a child of anything it is hard but to wean a child of his tube feedings is about to bring me to a meltdown. James just keeps reminding me that it is going to take time and that he is not going to eat overnight and I guess that is what I want. I just want him to eat and be healthy and happy and I can't help but feel like he's not ready and maybe we should wait a little longer. I go back to work tomorrow so I am hoping that he will eat good (or maybe better) for his grandma. We will see I suppose, James is going out of town on Wednesday and won't be back until Sunday and I'm worried that I won't be able to do this on my own and that I will fail him in some way. Anyways I'm going to stop here because I'm getting myself upset again. I am trying to look at the positives that he is eating and drinking more than before and that God will guide us in the right direction. Please keep us in your prayers.

Day 1

2009-05-09T21:46:00.002-05:00

Today went so great! We woke up with a wonderful morning. Since we did not tube feed CJ this morning he woke up happy and was not retching at all, which is so out of the ordinary. I absolutely loved waking up to him laughing and being silly instead of retching and crabby. We gave him half of his morning feeding by bolus (no pump). He ate a cup of fruit loops for breakfast which took him almost all morning to eat so we never did a morning snack. For lunch he ate 2 bites of hamburger and 3 tsp. of mac and cheese, then for an afternoon snack he ate 2 slices of watermelon (his favorite). Then for dinner he ate 3/4 of a hot dog. I would say that for his first day he did so awesome. He also drank probably 4-6 oz of water throughout the day and I ended up giving him a 4 oz bolus of water around mid afternoon. I thought he did so great I know it is hard for him to swallow. He is still real hesitant when it comes to swallowing so meals take at least an hour so this is something we will need to work on. Tonight at dinner we had all finished our meals and were waiting on CJ to finish his, well it takes him forever to finally swallow his bites which I figure is just inexperience so I went and got a hot dog and started racing him to see who could swallow their bite first which did speed things up a little although I now feel like I could explode, maybe I better think of these things before I'm done eating. lol :) Any ways he seemed very content and happy today never complaining of being hungry but we did still have to rock a little. Right now he is in bed sleeping peacefully and is yes hooked up to his pump we decided to tube feed him at night to increase his calories so we will see how this works. Please continue praying for his strength.

Big Day

2009-05-08T21:32:00.002-05:00

Wow!! Its hard to believe that tomorrow is already here. We are going to stop CJ's tube feedings to see what happens. We had an appointment last Monday with OT and they suggested only stopping one tube feeding at a time. This I think was a good idea but only in some ways. Yes he would probably only be hungry a little and would not be short that many calories but, the problem I see with that idea is that he is still getting tube feedings so therefore I think if he feels hungry he will just wait for the tube feeding instead of eating real food. So just to humor them we did try that last week by stopping his 6pm feeding so that he would eat dinner. Although he did eat a little more he got bored and wanted to still be hooked up after just as we thought. So now we are going to test our theory and stop the pump altogether. We are going to bolus feed him in the morning and at bed time but we will not use the pump at all. I talked with CJ about this a little but I don't think he understands what I am trying to say because he's just worried about having to take out the button and whether or not it will hurt when it does come out. I tried to explain to him that we were not taking the button out, that we are just not going to hook him up to his pump but I'm not sure he was getting it. He did say OK that he would eat real food though so I am praying really hard that God gives him the strength he needs to get through this hurdle in his life. I am going to try to keep my blog as my daily journal also of his progress. I am really excited and also very nervous at the same time, please pray that all goes well for CJ.

Doctors Appointment

2009-04-21T18:32:00.002-05:00

Good News. We went to see the CJ's doc on Monday the 20Th to see about stopping his tube feedings to see if it would encourage his eating, and he said that he thought that it was a great idea. We went over what he is now eating per g-tube and I told him that we planned on feeding him in the morning and at bedtime with nothing in between except a bolus of water periodically. He said it sounded as though we had a well thought out plan and that he probably won't need the water bolus on account that he will probably start also drinking more fluids so we won't have to worry about him dehydrating, he also reminded us how a normal 4 year old eats and to remember it is a weekly total of intake not a daily total.
I want to make sure that we can commit to CJ when we do this so we will not start until the first Saturday in May. That will give me 3 days to get started before I have to go back to work. We were also planning on offering CJ food all day whenever he would eat but the doc said that we would be better off keeping him on a regular normal kid schedule with 2 snacks in between meals and to also keep a food diary.
I am both excited and nervous at the same time. We will also be working with OT at Mercy and we have an appointment with them on Monday to also go over everything. The thought of him not gagging and retching anymore with his meals is so exciting. On mornings that we feed him late there is no retching when he wakes up, but when we feed him on his morning schedule he wakes up retching and will do this for about 45 min. it's horrible and it makes him feel horrible. Please keep CJ in your prayers that he has the strength to overcome the battle that is to come and that he will succeed with leaps and bounds.

Getting Creative

2009-04-17T21:49:00.002-05:00

Happy Late Easter!! Our Easter was fun. I missed out on the Easter egg coloring this year due to the fact that I had to work (bummer). So needless to say James was very excited to be on dad duty that day. :) I love him so much he is such a great dad. I know he really wanted to be out fishing but he colored eggs instead and did a wonderful job. He was very creative with the eggs and even took pictures and sent them to me via phone so that I would not completely miss it. Well Tax Season is officially over so I am back to my regular schedule and it feels great to know that I won't be working so may hours. With that being said!!!! I have some exciting or what I hope will become exciting news. We have a client that comes into our office and her son was also tube fed like CJ. I always enjoy when she comes in to have her taxes done because it's nice to be able to talk to someone that can relate to your situation and knows what your going through. Well last year her son started eating by mouth (how exciting) but we never really got to talk about how this miracle happened. This year I was determined to find out what she did.
I already knew that we saw the same OT at Mercy since we had ran into each other at previous appointments, but since we were having tests done we had stopped OT until the tests were complete. Naturally after the tests were completed I was exhausted and I guess just accepted that this was how it was going to be and quit going to Mercy for OT. Until I talked with Heather. Now I am excited again and ready to start helping CJ again with his eating. When Heather came in we naturally started talking about our boys and she asked me if I had gotten extreme with his eating?
I was a little surprised with this and just said well we offer him food all the time and have him sit at the table with us whether he eats or not but I don't know if that's extreme or not. She proceeded to tell me that what she meant by that, was to stop tube feeding him. I was shocked to hear her say this because our friends Nate and Amy kinda did this with Kaden when they fed him at night and not during the day he was eating more, so needless to say this got my attention. We had thought about it before but I was afraid to try.
What she did was tube feed him once in the morning and at bedtime then during the day she would bolus him one to two ounces of water every couple of hours to keep him hydrated. She said that within two weeks her son went from not swallowing anything to no more tube feedings at all. And within 3 months he was able to have his mickey removed. I got on the phone immediately and started lining out doctor and OT appointments. Our first appointment is Monday with his regular doc. I want to make sure he is monitored during this so that he doesn't get sick or dehydrated. I am not going to ask the doctors anymore if this will be OK to do, I am going to tell them this is what we are going to do like it or not. I have tried doing it there way and although we have made some progress I believe with all my heart and soul that he wants to eat. I think he is starting to get lazy about eating because he knows that he will just be hooked up and he will have a full belly so why eat real food.
CJ here lately has started eating more. He loves cheese and mushrooms of all foods. He is now chewing and swallowing food quite often and will sometimes eat as many as 6 bites a meal. I think that if he gets hungry he will eat a whole meal. I am really excited and at the same time torn apart about doing this. I made sure I got Heather's phone number this time and I asked her if she would be my support since I guess in a way I will be making my son very hungry. I can already hear him crying and saying he's hungry I know he will have all the food in the world being offered to him but the thought is still horrible. I guess this is what you might call tough love. I am not sure when we will start this, I will let you know what happens on Monday. Wish us luck and keep us in your prayers.

2009-04-10T22:34:00.000-05:00

By the time we got to this photo he was pretty tired.

Karate Tournament

2009-04-10T21:58:00.003-05:00

I know this is way overdue. The Karate tournament was so much fun. CJ went into this of course not sure of exactly what to expect. It was so cute. As soon as they started explaining how things work and showing everyone all the trophy's he was so excited. He said he was going to get himself one of those trophy's. I was so very proud of him, his first medal was a gold medal and he was so excited it almost made me cry. He came running to me screaming look what I got mom, look what I got take a picture of me. The picture I posted of him holding the medal was his very first medal ever. The gold medal! Just looking at those pictures I can still see the pride of accomplishment in his face. It was so cool to see him get so excited that finally he was winning medals not just his sister. CJ was in 5 events that day and won 3 golds and 2 silver medals. We were so very proud of him. Now the great thing with karate tournaments is that everyone always wins. And with that being said you can take the medals you win and trade up for a trophy or trade your small trophy's for larger trophy's. So needless to say when we asked CJ if he would like to trade his medals in for a trophy he was all for that. So we came home with one gold medal and a 3rd place trophy. It was so cute, when we got home of course we had to clean off a shelf for his trophy's (they also got a small participation trophy). As we were cleaning off the shelf he just kept chatting about how we were going to have to get more shelves because he was planning on winning allot more trophy's. I had to kinda chuckle to myself when he was chatting away. To think that almost 5 years ago the doctors were telling us that they didn't know if he would survive or not, to today, he is running around winning trophy's and medals. He definitely is nothing short of a miracle. I am truly blessed. I am so very proud of you CJ and we will put up as many shelves as you need.

Dance Competion # 2

2009-03-20T21:05:00.003-05:00

I have been meaning to get this posted all week and just did not make it. Nikki had her 2nd dance competition last weekend and again they all did so awesome. She danced in her small group to the song Cooties (in the blue outfit) and in the large group production the danced to Ease on down the road, in this dance they are dressed as the Wizard of Oz and of course Nikki is a munchkin. The dance is really neat. The little girls won silver for Cooties and for the production they won PLATINUM!!!! You go girls. I was so proud of my little munchkin. The pictures aren't real great I forgot my camera so all I had was my camera phone. We won't have any dance this weekend though. This weekend is dedicated to CJ as he has his first karate tournament. The kids are just growing up so fast. I will post pictures of CJ's tournament hopefully next week. Spring break has been a relief for the kids I think they really needed the break. We even let Nikki sluff on her homework so we will have to get with it this weekend. As for now she is having her best friend sleepover and we are currently in popcorn mode watching Nancy Drew one of her fave movies. It will be interesting to see who makes it to the end of the movie. The girls or me. :)

It will probably be the girls. lol. tata for now.

Still Here

2009-03-09T18:57:00.002-05:00

Hi we are all still here and doing well. I have been working around 50 hours a week so I have been to tired to get on the Internet to much. Not much new happening around here. Nikki had her dance competition spring performance last weekend it was so cute. I forgot my camera though so I am waiting on pictures that some of the other moms took. They are so great. James is teaching another financial peace class and is keeping busy with the housework that I am not doing right now. He was attempting the mop the other day and looked very awkward using it so I couldn't help but laugh and let him know that I may have an instruction manual to it somewhere!! :) He didn't think that was very funny. We are having a little trouble with Nikki right now, so now I now understand what people mean when they say ? going on 30 because she is definitely 7 going on 17 and seems to have forgotten that mom and dad are boss. As soon as I ask her to do something she automatically just does whatever she wants to do instead. AHHHH we are about to pull our hair out. I love that girl more than anything but I don't remember anyone warning me that hormones started this early. I had to laugh at her the other day because she wanted to take a radio into the bathroom while she took a bath and I told her no because it wasn't safe so she instantly started crying because "great what was she going to listen to now while she took a bath it is so boring." (This is a new thing, don't have any idea where it came from because I don't listen to a radio in the bathroom) I started laughing and told her she could listen to herself taking a bath. Of course she didn't like my answer. I'm kinda scared to know how the teenage years are going to turn out. Maybe she will get it all out of her system now. lol. :) I love you Nikki. XOXOX. On another note I want to give a shout out to my mom and dad they are retired and live in Nevada and have a little woodworking shop that they love to tinker and build stuff in. In the summer they go to allot of craft fairs to sell their stuff. Anyways I talked my mom into starting a blog so that more people could see their stuff and who know she might even sell something, so if your not doing anything you might stop by and take a look, their blog address is
www.ourlilfretshop.blogspot.com . Well James and I have started walk Kansas so I had better go get my walking in for the day. tata for now.

Nathen James

2009-02-13T21:35:00.000-06:00

Here is my new and first great nephew. He is so cute! (Of course i'm not biassed). I can't wait to see and hold him. We are planning a trip to Nevada is August before school starts. It seems so far away I can't wait. He won't be so tiny anymore by then but thats ok. I am excited about being able to see all of my family. The last time I went back home was in 2003. So it is a much needed and anticipated trip.

P.S. Just wanted to say thanks Amy!! :) You'll get there. lol!!

Great Aunt

2009-02-11T20:46:00.002-06:00

Well my niece had her baby today. I am officially a great aunt. That seems really strange to say because you think of a great as being old and I'm only in my 30's. Anyways CONGRATULATIONS NENA! And HAPPY BIRTHDAY TO YOU BOTH. I am so happy for you. His name is Nathen James and he was born at 7:01 am on 2/11/09 In Winnemuca, Nevada, he weighed in at a whopping 7lbs 15oz. and was 21 1/2 inches long. I have a picture and will try to post it tomorrow I think I am going to go to bed for now.

P.S. Just wanted to give a shout out to Nate and Amy also. Congratulations on the arrival of Brody.

1st Dance Competition

2009-01-26T13:59:00.001-06:00

We had allot of fun at Nikki's dance competion. Lucky for us we did not have to be there until 8am. So I woke up at 5 to get myself ready before I had to get Nikki ready. I think James was more excited about what the day was to bring than Nikki was. He was bouncing off the walls and kept asking her if she was excited and she would say yes then James would comment on how excited he was. It was funny I was laughing at them being silly. The competition was in Olathe so we had to leave home around 7 and of course we naturally barely made it out the door on time. I think next time I better give ourselves more time to get out the door. But then maybe we will be better organized by then. Nikki and all the other girls did an amazing job. I was not able to go to practice the Sunday before and the teacher said she was kinda worried because the girls seemed to be all over the place with thier dance. But she was very surprised at the competion the girls all danced wonderful and even remembered their steps without any prompting from the teacher which gave us extra points from the judges. We are so proud of all of them. The girls did end up placing. I can't remember what they called it though. I will have to find out and post more on that later. After the competion every thing seemed kinda crazy with everyone running around so we just took some of our pictures here at home afterwards. Oh yeah I forgot to mention that the song she danced to was called cooties.

Nikki I want you to know that I think you were amazing and I am so proud of how you danced. It is so much fun to watch you grow in dance every year. Mom, Dad and CJ all love you so much. Keep up the good work. We love you. xoxoxoxo

Green Belt

2009-01-15T20:42:00.003-06:00

Congratulations CJ! We are all so very proud of you. Not only did you pass your testing you skipped a belt. You always seem to amaze us.

Yes you heard right. CJ of course started as a white belt. The Sensa (spelling?) had combined the white and yellow belt curriculum together in his classes since they are similar. I was not aware of this so when they passed out belts I was sceptical as to whether he was ready for a green belt. James on the other hand is a parent helper so he knew they were combining the curriculum for both belts but he didn't realize they were going to skip a belt by doing this. We were so excited when they passed the belt over to CJ. It was really cool. Young Champions of America always has a Fall tournament and a Spring Tournament and we skipped the one in the fall due to James thinking that CJ was not ready to do tournaments. But after seeing him perform for us I told him that we were not going to skip the spring tournament if at all possible. He definitely knows his stuff and I guess mom and dad have to step back a little and let him grow up as much as we may hate this. I came to a realization as I was watching him perform for us, that we try to shelter him too much and that he is ready for more than we give him credit for. I am just so proud of his accomplishments.

Nichole...

2009-01-09T21:37:00.002-06:00

I realized today that I have been posting allot about Conrad lately so today I am going to give this post to Nikki. She is our emotional child but she also has the largest heart ever. I remember when she first started kindergarten her teacher told us at the first conference that all the parents were wondering who this girl was, because their kids were always going home telling them what a great friend she was. And I am very proud to say she is friends with everyone, even the bullies that she protects others from. Yes, she will stand her ground for anyone. Now in the first grade we get the same praises from her new teacher that she is very thoughtful and considerate of others. It makes me feel all warm inside to know that she sees everyone as equals. On another note she is also teaching mom and dad about recycling. She would recycle everything and we (James and I) are learning to not be so lazy about it. We now recycle our cans and paper. Nikki mentioned the other day that we need to start recycling our plastics also. So now I need to get a tub for plastics. I know that she's right. Along with trying to save the planet she is also involved in many activities which keep dad and I hopping around. Her first love would have to be dance. She dances Hip Hop, Ballet, Tap and Jazz. She about breaks us in shoes alone. lol.:) We tried soccer ( too much running) and pre-T-ball (which was ok) but she liked dance the best. This is her 3rd year of dance and her first year on the competition team. So far she loves it even though it is a little more work. She has practice 2.5 hours on Fridays and 3 hours on Saturdays. She was kinda bummed tonight though because the 5 star production that she was going to be in next weekend got cancelled due to them deciding they were not going to have any groups only solos so now she is going to have to wait till the end of the month. This year she will be going a total of 7 competitions including the nationals in Branson. Most of the time she will be dancing in KC, Overland Park, and Olathe. We are all very excited about this. She is also in Girl Scouts which is every other week and they also do allot of great things with the kids. And last but not least she is taking piano lessons but that recital we are excited to say is only once a year. Zzzzzz. Nichole is a wonderful child and loves to please everyone. We very seldom have to get on to her and if we do it's generally because she loves to eat with her fingers which really grosses me out. I don't think I will ever understand. As you can hopefully tell she is a completely wonderful child and I feel so blessed to have her in our life. Nikki we I hope you know how much your dad and I love you. You are the rays of sunshine that warm our hearts every day. xoxo

No No Words

2009-01-07T21:00:00.004-06:00

Well if you haven't figured it out yet our son is quite the pill. Last night as we were getting ready for bed CJ was running around upstairs and I was swapping the laundry out (our laundry is upstairs) when CJ starts rhyming words which I didn't think anything of. The next thing I know he says I twisted the knob (he was talking about the doorknob) and it f "ing" "issed" me off .(geez! wonder where he heard that dad!!). I immediately looked at him and asked what he just said and this is how that went:

Mom: what did you just say?
CJ: nothing
Mom: yes you did. Tell me what you just said
CJ: You didn't hear me.
Mom: Yes I did.
CJ: No you didn't I said it quiet

There was more to this conversation but I never did get him to tell me what he had said so I had to get his dad involved and after a long conversation he finally told his dad through many tears what he had said. It's not that I wanted him to repeat what he had said lord knows the first time was bad enough. I just wanted him to realize how bad those words were and have a conversation with him about that. He did say he was sorry for saying those words and his dad said he was sorry for saying those words to whenever that was. James does not cuss very often so whenever it was that he said it CJ heard and never forgot. It was so sad to hear such big words come out of such a little mouth I was completely shocked and I think CJ was to when he realized that mommy heard him.:) OH the things we don't realize were teaching our kids.
On another note Nikki had picture retakes today since she was sick when they took the pictures the first time. I finally have a scanner so when we get them I will post the pics. She is also going to be going to her first dance competition next Saturday and she is really excited about that.
We are also really glad that school has started back up. Well at least the kids are. I would keep them home forever if I could.
I suppose these are the moments in life that we will laugh and cherish the most as the kids get older. I suppose no ones perfect.
Oh yeah! CJ tested last week in karate for his next belt we will find out next Tuesday if he passed. So stay posted.

Breakfast, Peaches and Dinner

2009-01-05T18:40:00.003-06:00

Today was an awesome day. It gave me hope and maybe or hopefully an insight of what is to come for the new year.:) For those of you that don't know CJ was born with CDH and has never eaten by mouth at least nothing that would amount to anything. He lately well I guess for some time (a few months) has been just chewing and spitting, which is really gross at the dinner table but never discouraged. For Christmas we got the kids some chore charts that lists their chores and how much money they earn per chore per day as well as penalties that would reduce their allowance. The kids were really excited about earning money that they could spend however they wanted to spend it. We also included several special family activities that they would be able to choose at the end of the week of their choice if they did not have to use any penalties (movies,games,favorite dinner that they would get to help cook etc...). We also told them that on the last weekend of every month we would take them to Toys R Us to spend their money. Well your probably wondering what this has to do with peaches or even meals! Well one of the chores CJ has is to swallow 3 bites of food a day which is quite a task for him. In doing this he will earn 25cents per day. WOW. It is working he forgets that he only has to take 3 bites and has been taking around 5. Now mind you these are bite sizes of solid foods that you might give a 9 month old baby. They are very very tiny bites but it is so exciting to finally see him swallowing something. Well today he asked me for some peaches so I cut up a slice and he ate the whole thing in about 10 minutes. Then asked for more. So I cut up another slice. And he ate that one also and asked for yet another slice. I couldn't believe it I was so excited I couldn't get to the kitchen fast enough. I asked him if he would like me to cut the pieces a little bigger and he said yes. So I nervously cut them a little larger. I guess the size would be about 1/4 of a dime so still very small. I was so proud of him. And he was so proud of himself for eating it. He ate all those pieces in about a 30 minute period without gaging or spitting. Then to finish off my day he ate 3 kernels of corn and 2 bites of a Penni noodle. YEH!!!!! Oh yeah! at breakfast he also ate 2 kix cereal balls. This is the most he has ever eaten at one time or even in a day or week or even month. He usually would just lick or chew and spit or sometimes he would just start retching at the sight or smell of the food and occasionally sip liquids so this was an absolutely huge huge day for Cj. I am so proud of him. It made me cry to see him working so hard to eat, he wants to so bad. He always asks for food and I make sure he always gets the food he asks for but he has never actually eaten what was given to him.

CJ I can't wait to see where you go next in your life and what challenges you are going to conquer on the way. I am so proud of you. I know that you will be eating soon and we will one day remove the mickey. I will always be here supporting you in whatever way you need. I am so happy that you are never afraid to voice your opinion and tell me what you want I think that at age 4 this is pretty great. Although a very ornery boy you steal my heart every day.xoxo

2009-01-01T12:53:00.001-06:00

HAPPY NEW YEAR!!

Kids....

2008-12-31T18:02:00.002-06:00

My kids fight so much. Sometimes they just absolutely drive me crazy with their fighting. I guess I know how my parents felt now. (They told me I would.) Guess I should have listened. Monday night I was in cleaning up dinner and James was in the office on the phone and the kids were fighting about who knows what as usual when I hear CJ say that he has to go to the bathroom and Nikki said that she did to and they went racing away. Next thing you know I hear James say I gotta go! I was thinking that was odd since no one was screaming and then thought oh no someones not breathing. Then I hear James getting onto CJ and CJ started crying so I went into the bathroom to see what was going on. Oh my gosh I did not even know what to say. Apparently on the race to the bathroom Nikki got there first so CJ got mad pulled his pants down and peed in her lap. I asked him what made him think it was OK to pee on his sister and his response was I had to pee really bad. I told them that next time one of them had to use the other bathroom (yes we have 2). And banned them from both being in the bathroom at the same time. I'm sure we will look back at this and laugh but as for now we weren't even sure how to punish the kids. The only punishment we could come up with was early bedtime and he had to loose .50 cents of his allowance. Hopefully he will make better choices in the future and I don't think Nikki will ever challenge him on the way to the bathroom ever again. I felt so sorry for her she just sat there saying this is so gross. I suppose kids will be kids. I love them anyways.

Merry Christmas

2008-12-29T19:56:00.002-06:00

OK so I know that I am few days late!:)
Christmas was absolutely amazing this year. I think probably the best one yet. The kids were so excited. On Christmas Eve we baked the cookies for Santa, chocolate chip with no sprinkles, CJ forgot about putting sprinkles on them so we just let it go. Santa was happy!:) Christmas morning started very very early for us. The day before Nikki had asked if she could wake us up early since it was a holiday? And of course we said yes. Little did we know what early meant. Nikki woke up her dad first and his first words were what time is it? Nikki went to look at the clock and came back and said 1:45. (Yes you heard me right.) He told her that since she had already looked at what Santa had brought we probably should go back to bed because it was to early to open packages still. Well she must have not been able to sleep because the next thing we hear is heard of elephants running up the stairs and now 2 kids screaming SANTA WAS HERE! SANTA WAS HERE! as they came barreling into the bedroom. One look at the excitement on their faces and there was no way I could tell them to go back to bed. Luckily Santa does not wrap his presents and he also brings all of his toys already put together and ready to go so there was not much that mom and dad had to do but watch. After a thorough inspection of all the toys and stockings we were able to talk the kids out of opening the rest of the presents and got to get a little more sleep. Zzz. We did however ask Nikki if she woke her brother up or if he woke up himself? She said that she had woke him up because she thought he would like to see what Santa had brought him. (how sweet) Needless to say Christmas was absolutely amazing. We had so much fun watching the kids open packages and squeal with delight. It was truly a magical day.

White Christmas?

2008-12-23T21:58:00.003-06:00

James had to work tonight due to the bad weather we are having so I took advantage of this and we finally wrapped and put the first presents under the tree. Very Exciting... The kids were besides themselves with excitement it was so neat. I'm actually not sure just how Christmas is going to work out this year. Hopefully the weather will start cooperating better pretty soon. James is on call all week and not only is he on call he is first out. So we are trying to create a plan B if the weather does not help with the clearing of the roads. On another note I am hoping that we get a white Christmas. The last time it snowed CJ was very curious after it melted as to when it was going to snow again, it went something like this.

CJ: mom when is it going to snow again
mom: I'm not sure we will just have to wait and see
CJ: well I know it will snow on Christmas because it always snows on Christmas

Well needless to say I didn't have the heart to tell him that only happens in the movies. I may have mentioned this snow story previously , I couldn't remember but it was so cute I had to mention it again. I love this age where there curiosity and interests help them come up with the silliest things. Tonight the kids each made their dad a Christmas card. Nikki was very expressive in her card and wrote her dad a cute poem. and CJ wanted to thank his dad for a certain thing. (I will say more later it's a surprise). Anyways after I wrote the first thing CJ wanted to say I asked him if he wanted to say anything else and his response was how bout dad poops allot. After trying not to laugh I explained that I realize he was being silly and it probably was not a good thing to put in a Christmas card. (Or on the other hand maybe I will call Hallmark. lol:)
Well on a not so Christmas note Nikki has lost yet another tooth!! That girl is not going to have any teeth left. She has now lost her front 6 upper teeth and 4 front bottom teeth. I told her she would have to wish for her 10 front teeth so she could whistle Merry Christmas. She then proceeded to whistle Merry Christmas. Smarty Pants!! That girl whistles non stop, it drives us crazy. Not that she whistles badly because she can whistle any tune she hears, she just is always whistling. I don't think most of the time she even realizes it. What crazy kids I have they sure keep us entertained anyways. Tomorrow we will be baking chocolate chip cookies for Santa since Nikki has informed me they are Santa's favorite and CJ don't care as long as he can put sprinkles on them. Not sure how that would taste. I told them that CJ could make his cookies for Santa and Nikki could make her cookies for Santa to take to Mrs. Clause. They thought this was a really cool idea. Now we just have to inform Santa. I wonder what he will think of that idea?

Snow and more Snow

2008-12-16T21:18:00.002-06:00

When I woke up this morning it was snowing. YUK. I only kinda like snow and then only for a little while. I have about a 45 minute drive to work everyday which I don't mind since it gives me time to get my brain in gear for work and to relax from getting the kids ready for school and the same on my way home it lets me relax and get ready for home life, I hate to carry my work home with me. This morning it took me an extra half hour so I was late for work, (O well). I always drop CJ off at grandma's and then drive Nikki to school in Paola so I can't really leave early on bad weather days since I can't drop Nikki off too early for school. I thought I was doing really good on time this morning though. I ended up getting Nikki to school about 10 minutes early but then one of my windshield wipers fell apart and was screeching on the windshield, talk about the ebee jeebees. So I had to go to the parts store and get new wipers and someone to put them on for me. The guy was really nice about it. I think we ended up getting around 2-3 inches. I kinda feel like we have been having a streak of bad luck here lately and I'm not really sure why. Maybe because we just got over a streak of good luck so now its time for the bad luck! Who knows. It started Friday when our Christmas lights were vandalized. We were very thankful that it was just the Christmas lights and not our house but a real bummer non the less, it was the first time in years that we had even put the lights up. They did about $160 in damage. The cops said they had caught the kids (teenagers) apparently they left behind quite a bit of damage. I'm sure their parents are real proud. Anyways enough about that. I called CJ's GI doc about his double swallowing and if he had any new information on what might be causing this, but I haven't heard back yet. I have a feeling that he forgot to look into it. It always bothers me when I leave a message for the nurse and she calls back and has no idea what I am talking about even when I explain it further. I had to ask her if she had even looked at his chart before she called me back since she didn't even know about the motility study that was done (she had to go get his chart). Needless to say I kinda feel as though the doc didn't really care about CJ not swallowing or eating for that matter. He made absolutely no notes in his chart regarding the conversation we had when the tests were done so therefore he left the room that day with no intention of doing any further research that he said he would do. I will never go back to him again. I realize that doctors see allot of patients throughout the day and that my kiddo is not necessarily a memorable child but what I do think is that if the doctor does not remember a child then they need to at least review the chart that they are given so when they walk into the room they know at least a little bit about him or at least can convincingly fake it. WOW!! I am so glad to get that off my chest, sorry I guess I needed to vent a little. Thank you so much for listening sometimes I get all wound up when it comes to his doctors I think they stress me out more than CJ's medical problems.
Well on another note I am almost done Christmas Shopping I sat and wrapped almost everything and made my list of what I have and what I need and was surprised that I only need a few more things which I can just grab this weekend and I'm done. YEAH!!! I love to shop and I especially love to Christmas shop. The stores are all decorated so pretty, the Christmas music is playing and people are smiling and running about shopping. It just puts you in the mood for the holidays. I can almost smell the gingerbread now. Tonight while CJ was in karate class I showed Nikki how to make snowflakes out of coffee filters she thought that was really cool and is now making one for everyone in her class for Christmas as well as all of the teachers in her school. She wanted to make enough for the whole school but I had to tell her that she probably would not have enough time to make so many. She is such a thoughtful child I just love her so much. She had the biggest heart and is always thinking of others. I am so proud to be her mommy I hope she always keeps her innocence.

Out of the mouths of babes

2008-12-15T15:54:00.002-06:00

Not to much going on in the Rice household. We have been keeping ourselves busy though. On Saturday we took Nikki to dance and I told Cj that we would not be staying at the studio since I needed to go home and clean the house and he asked me who had messed it up. I thought it was cute. It also made me stop and think for a moment that maybe I keep my house too clean. (who knows). Needless to say I decided that maybe the house wasn't as dirty as I thought it was (and it wasn't) so I didn't clean the house. That day anyways. I know that I have OCD when it comes to cleaning the house and it kinda drives everyone crazy so to my family I promise to try to not clean the house so much and spend more time with you. Off to another note James shot his first deer of the season Saturday so I drove out to where he hunts and dropped off CJ so he could go help track down the deer. Besides being really cold that day CJ had just finished eating and really wasn't in the mood to go look for any deer even if he did get to ride the four wheeler, but we made him go anyways. When James saw the deer he made CJ get off the four wheeler and walk (CJ had not seen the deer yet). James showed him the blood on the ground and told him to follow the blood which he found interesting to do. I guess he looked up and saw the deer and was all excited. He just thought that it was so cool to get dads deer. Looks like we have a hunter on our hands. Nikki is doing great also we went to her Christmas program last night. It was so cute listening to them singing their Christmas carols. She was also very excited to get a new christmas dress. I did not get any pictures though because I didn't realize that the batteries in my camera were dead. O well. Nikki had to go to the doc today though because she had a wart on the bottom of her big toe so she had to get that burned or frozen off so she is kinda down in the dumps since it kinda stings really bad. (my poor baby) I just hate to see my children in pain even if it is just a little.

O Christmas Tree O Christmas Tree

2008-12-09T21:14:00.002-06:00

FINALLY!! We finally went and got our Christmas tree last Saturday. We always go to Fontana Pines ( a tradition) and this year the choices were pretty slim. Almost all of the trees were dead. We thought that maybe they had a disease go through but after visiting with them we found out that the hail storm that we had back in June had killed the trees. So sad. We felt really sorry for them since that is probably the majority of their income that is just gone. After looking for almost an hour we did finally find a nice 9 foot tree that everyone agreed on. No my house is not tall enough for a 9 foot tree, although we do have 10 foot ceilings, anyways we planned on cutting it down to an 8 foot tree which would have been just about right but James got carried away with trimming the tree and so now we have a 7 foot tree. I had to laugh and said the positive thing was that he would not need a ladder to put the topper on. I love to decorate the tree it is one of my favorite things about Christmas. The kids were so excited to be able to hang all the ornaments and then turn on the lights and just watch. They make sure that all the lights are on as soon as we get home. They were also excited about our snow today we got about 1-2 inches, not much but enough to start planning what our snowman is going to look like when we do get enough snow. I can't say often enough how much I love my kids. It is just so much fun watching their excitement towards everything. While I was driving home on the horrible roads tonight I just kept thinking about how excited the kids probably were that we got snow.

Christmas Lights and Pajamas

2008-12-04T21:39:00.002-06:00

Not to much happening around here. I finished the class I was taking and passed (yeah!). We are also finished teaching our financial peace class, so our days are starting to slow down a little and I am really glad about that. I started cleaning and organizing our home to get ready for Christmas last weekend and actually cleaned out our closets. I guess I overlooked the fact that CJ was still wearing his 2T pajamas. I mean, I knew that they were getting a little snug, and he never complained that they were too tight so I just thought that they were OK I felt so bad for him. Now Nikki on the other hand is very specific on what she wears and everything must always fit just right. Meaning that it can't be too tight, short, long, bumpy, silky, loose or anything else but perfect. Needless to say buying her clothes is next to impossible but she always lets me know when she needs new ones so this is good. So anyways I went to Walmart to get CJ some new jammies and went ahead and picked Nikki up some also (which I ended up returning because they didn't fit right!! O well I should have known better). CJ on the other hand thought his new jammies were the bomb. I ended up getting him some Iron Man jammies (I have no idea who this is but he did) and he was so excited. He grabbed them and ran to the bathroom and squealed, hooped and hollered the whole time he was putting them on. We were all laughing, he is so silly. It was neat to see him get so excited over something like pajamas. (maybe I just don't buy them clothes often enough). After everyone got their pj's on we decided to have the kids put up their Christmas trees since we didn't get the big one put up and all the decorating done last weekend (so sad). Conrad has a blue tree and of course Nikki has a pink tree. It's fun watching them decorate their trees over and over as they try to make it just perfect for them. James did finally put lights on the house for the first time in 3 years last night, I was so happy to come home from work and see the lights going up it just puts you in the Christmas spirit. Especially to see how the kids eyes light up with the excitement of whats to come. CJ asked me when it was going to snow and I told him I wasn't sure we would just have to wait and see. He said it would snow on Christmas because it always snows on Christmas. I cherish his innocence. I wish it would snow on Christmas, I believe that if it did snow they would be more excited about the snow than they would be about the packages under the tree. I didn't have the heart to tell him that it only snows on Christmas in the movies, I just said we would have to wait and see.

2008-11-30T00:17:00.000-06:00

Lets Luau

2008-11-29T23:44:00.002-06:00

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

2008-11-27T22:01:00.001-06:00

Happy Birthday Nikki

2008-11-27T10:01:00.003-06:00

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

2008-11-27T09:58:00.002-06:00

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

2008-11-17T22:11:00.001-06:00

We're Home

2008-11-14T18:26:00.002-06:00

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

2008-11-13T21:11:00.004-06:00

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

2008-11-09T17:26:00.002-06:00

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

2008-11-07T22:59:00.004-06:00

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

2008-11-01T00:02:00.002-05:00

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

2008-10-29T19:51:00.002-05:00

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

2008-10-24T22:31:00.005-05:00

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)

2008-10-20T19:26:00.003-05:00

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

2008-10-18T21:20:00.000-05:00

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.

Offense Taken

2008-10-17T21:53:00.004-05:00

I was sent an e-mail from a friend that I thought was really a touching story. Until we had Conrad I looked at the world in a completely different way than I used to. Although we don't believe that Conrad has any mental disabilities he does have delays in other ways. He didn't start walking until he was over 2 years old and still doesn't really run he kinda just trots and he is also tube fed still.
He will eat a little by mouth now (when he is at school) but still not enough to sustain himself by any stretch of the means. It is so hard to answer some of the questions we are asked in regards to his eating like the most common one, When is he going to start eating? unfortunately no one can answer this question we will just have to wait until he is ready. The other famous question is, Why doesn't he eat? Well besides having an oral aversion we don't know this answer either.
Sometimes I feel like people think we have not tried hard enough or done the right things by their reactions. Although they are are not saying this sometimes I feel like that may be what they are thinking. Maybe I'm just thinking to much who knows.
We were at Wall mart today and Cj started retching and when he does this he starts gasping also and will sometimes spit out white foamy spit. (gross) Anyways, this woman gave me a nasty look then looked at him and asked if he was sick. NO!!! like I would take my sick kid shopping at wallmart. I realize that she was not aware of his situation but sometime I get tired of having to always explain it I suppose because I don't understand it myself sometimes.
I'm not sure why her reaction affected me so much because normally it doesn't bother me. Maybe I was just extra sensitive today.
Here is the e-mail address I hope it will work I tried to post it but couldn't figure out how to post the video. http://www.selfadvocacy.com/offensetaken
I suppose the point to my babbling is that we should never judge another person because we don't know where they have been nor do we know their situation.

Parent Teacher Conferences

2008-10-15T21:28:00.003-05:00

Way to go Nikki!! We had Nikki's first parent teacher conferences for the year tonight and Nichole is doing just awesome in school. We are so proud of her. It is great to go into those things and find out that the teacher has absolutely no concerns with anything that she is doing.
They have these graphs that show where she should be by the end of the first grade and Nikki was way above that line and on her phonemic awareness (which is how she pronounces words and sounds while reading I think!) she was completely off the charts. Needless to say we were just beaming!
Her teacher said that if she were to need work on anything that it would be spacing in between words. We did find out however that Nikki did get a card pulled last month sometime for talking in class but the teacher said that she starting sobbing really hard when she was told to pull the card that she felt so bad she let her put it back.
Nikki is our emotional child she can cry on a dime, she is also the type of person who always wants to do the right thing so when she realizes that she did something wrong it just breaks her heart to know that you are disappointed in her. We had to laugh though because she did fail to inform us of this whole card pulling situation so when we asked her about it her response was that it didn't count since the teacher let her put it back. I suppose she somewhat has a point! Good job on your school work Nikki we are so proud of you and what you are accomplishing in your life. We love to see the excitement you are starting to gain about reading books it is so neat to watch you reading silently to yourself. Its hard to believe that a year ago you were learning sounds and now your reading chapter books. Keep up the good work. Hugs and Kisses. XOXOXOXO

Tagged

2008-10-13T21:30:00.003-05:00

I was actually tagged several days ago and forgot to post it so here it goes.
About me

I hate a cluttered and unkept home.
I will not wash out poopy underwear they go in the trash
I don't like to speed
I have found that I love blogging
I haven't scrapbooked for some time and I'm like 3.5 years behind and running
I will not use someone Else's shower cushy ( not even my husbands)
I think bathrooms are gross
I have to sleep with earplugs because my husband snores really bad
I hope my children always have everything they dream of and that their lives are always filled with happiness.
I spend way too much on hair products
I organize the clothes in my closet (t-shirts,work shirts,slacks,tank tops etc.......
I love showtime late night shows (Dexter,Weeds,Californication)
I love reading my kids stories at bedtime
I try to always take one day at a time and not worry about tomorrow
I don't like to rush I would rather be late
I miss my family and wish we lived closer to Nevada
I wish my kids could know my family better
I love my house
My family is my life without them I'm not sure where I would be
I have the most wonderful husband
I love to hear my children laugh
I tell all of my kids every day how much I love them
Thinking about my children makes me smile
I wish I knew how to help Cj learn how to eat by mouth

FUNNY LITTLE MAN AND DENTISTS

2008-10-09T18:49:00.002-05:00

OK I have to start writing about the funny! funny! things my children come up with because I will never remember them. Yesterday morning while getting ready for work Cj came downstairs and was sitting in the dining room watching me so I said..............................
Me: I love you sooo much
Cj: I love you too
Me: You do? How much do you love your momma?
Cj: (after much thought) 4 dollars.
He is such a funny man I just love the things he comes up with. If I'm having a bad day all I have to do is have a conversation with my kids and I start smiling and laughing again. I love you both so much. XOXOXOXOX
Well on the other hand Nikki has had several dentist apt. here lately. She has lost her 4 front teeth 2 on top and 2 on bottom as well as having 4 fillings. Her teeth are really soft so they get cavities easily. Anyways her dentist sent us to a pediatric orthodontist (she had that apt. on Tues.) because her adult teeth on the bottom are growing in behind her other baby teeth causing everything to twist and turn. Her jaw is too small for her adult teeth. Can you say $$$$$$$$$$$.
So now she has to have 2 of her bottom teeth pulled (which we do in 3 weeks) this will help make more room for the 2 adult teeth that are currently growing in as well as have a couple of teeth coated with something (I don't remember what it is called) since they are soft but have not gotten cavities yet, after the 2 teeth are pulled she will then have to have a pallet stretcher put in to widen her pallet I guess after it is put in we have to click it twice a day for several months. I hope it won't be uncomfortable for her, I'm not looking forward to this. After we get her pallet stretched she will then have to get braces on her top 4 teeth to pull them together to hopefully make enough room for her adult teeth on top. Whew! She is so so brave at the dentist office and sits so still and patient. I hope that all of this work we will be doing in the next year does not ruin this for her and make her afraid of the dentist. I wanted to wait until she was older but they said it would be easier on her now being young so we have to do this all within the next year. Stay strong baby girl mom and dad and Cj will be right here with you to help any way we can. We love you so much. XOXOXOXO

Horoscopes

2008-10-06T21:23:00.003-05:00

I was sent an e-mail a couple of weeks ago about horoscopes and found it interesting that the kid's horoscopes were so right on.

Nikki is the Sagittarius, although I don't believe her to have Peter Pan Syndrome and I hope she doesn't enjoy gambling the rest is pretty accurate. She is definitely good-natured, social and outgoing. She knows everyone in her school and is friends with everyone. Last year during school conferences we found out that she protects the other kids from bullies as well as befriending the bullies and at the end of kindergarten she earned the friendship award. We call her our princess and she holds up her end of the bargain. She loves anything soft and shiny and definitely hates being confined and tight or bumpy clothes (this includes her socks). We love that she is so tender hearted and always tries her hardest to do what is right and is always willing to help out as long as it doesn't mean cleaning her room. lol:)

Sagittarius:
The Happy-Go-Lucky One (Nov 22 - Dec 21)Good-natured optimist. Doesn't want to grow up (Peter Pan Syndrome). Indulges self. Boastful. Likes luxuries and gambling. Social and outgoing. Doesn't like responsibilities. Often fantasizes. Impatient. Fun to be around. Having lots of friends. Flirtatious. Doesn't like rules. Sometimes hypocritical. Dislikes being confined - tight spaces or even tight clothes. Doesn't like being doubted. Beautiful inside and out.

Conrad is a Leo. I found it funny that it called him the boss because that is what I call him. He loves to be in charge and boss everyone around (especially his sister). He is very outgoing and loves to be the center of attention at all times and makes sure of this. He likes to help others as long as it is on his terms. He definitely has a creative energy that to this day still amazes me. He is going to be the class clown I can already see this since he loves to make people laugh. Tonight he was laying down watching TV when he just out of the blue started singing: Here comes the bride all fat and wide. We laughed till our sides hurt!! Not sure where he came up with this one nor why he started singing it. He is definitely full of himself in every sense of the word.

Leo:

The Boss (July 23 - Aug 22)Very organized. Need order in their lives - like being in control. Like boundaries. Tend to take over everything. Bossy. Like to help Others. Social and outgoing. Extroverted. Generous, warm-hearted. Sensitive. Creative energy. Full of themselves. Loving. Doing the right thing is important to Leos. Attractive.

I love my children so much ,they make my heart swell more every day as I watch them grow. I never knew it was possible to be so happy I would cry until they came into my life. I love to listen to there stories about there day and have learned to ask not how was there day but what did you do that was fun today? and they start talking non-stop. It is wonderful!! I love you both so much I hope you always know this.
I love you both forever and always
love mom
XOXOXOXOXO

Happy Birthday Madison

2008-09-28T19:10:00.002-05:00

Madison Brook Rice

Born Friday, September 28th, 2001 at 11:08 am she was stillborn as my water had broke that Wednesday. The girls had there own sacks so it took some time to decide how to deliver her and keep Nichole safe they gave us less than a 5% chance of Nikki surviving the delivery of Madison.
Madison was 9.7 ounces and 9 3/4 in. long. She was so small but absolutely perfect.

I only remember pieces of the story that the pastor read about two sisters that went on a walk when the younger one dropped her doll and when it hit the ground the doll broke and she cried because the older sister said that she could not fix the doll. I remember feeling broken when you received your wings and all I wanted was for you to be fixed. I don't remember the whole story, that day seemed like a dream that I was just floating through as I was also fighting to save your sister at the same time. I still miss you so much. I feel so blessed to have you in my heart, and wish you could be here with us. I dream of who you may have become and maybe that's what I am missing the most. I have the most wonderful angel above me and I just know that you are watching over us and that I will be with you when it's time. I'm sure your wings are sparkling and your laughter is like a beautiful song. I hope you know how much we love you and that you are a part of everything we do. Your dad and I talk often about how much fun it would have been to have you here with us but we know that it just couldn't be. Happy Birthday sweet angel we love you so much and think about you all the time. Love mom, dad, Nikki, and Cj.
xoxoxoxoxoxoxoxo

Savannah's Song:

I wonder how do we get by? Grace has always found to be sufficient and leads to understanding in hard times. Though at times our hearts long for her presence and we wish just to see her once again, a bundle of treasures sent from heaven returned as part of a greater plan. Though her eyes never opened, to see this world I know she saw Jesus when he wrapped his arms around my little girl, and I don't mind that someone else holds her though it's hard that we never had the chance to look in her eyes, see her walk, laugh and dance now her little head is resting on his shoulder and I don't mind that someone else holds her.
Now we've learned that all things work together and when in full circle always for the good.
Strength comes from holding onto our truth and calvary's rock will always see you through.
Though her eyes never opened to see this world I know she saw Jesus when he wrapped his arms around my little girl, and I don't mind that someone else holds her though it's hard that we never had the chance to look in her eyes and see her walk, laugh and dance now her little head is resting on his shoulder and I don't mind that someone else holds her.
No I don't mind that Jesus holds her.

THE BIG 40!!!

2008-09-26T22:52:00.003-05:00

It is official James will be 40 this year! OUCH!!!! Just kidding babe, you know that I love you. We will be Vegas bound for the big occasion I booked a show with Rodney Carrington on his birthday the 5th of November at the MGM Grand we will be front row and center, I think we are looking forward to this as much as anything he is a great comedian. I took James to see him in KC on one of his other birthdays and we just had a blast so this should be allot of fun. Although I won't be able to drink anything because at the last show a woman got up to go to the bathroom and he announced it the whole way. James says there's no way I won't have to get up. I sure hope not. Stay posted!!! LOL.... We also booked an all day tour of the Hoover Dam on the 4th so that should be fun also. I am looking forward to being back in Nevada and seeing how Vegas has changed (I'm sure allot), but as for James this will be his first time... He is really looking forward to the trip and I'm so happy to be able to do this for him. He is a wonderful husband and father and I just love him so much for all he does and sacrifices for our family.

Radiology Apointment

2008-09-23T18:25:00.002-05:00

We had Conrad's appointment today with radiology and they just reran a test that we have already done. It's not really a swallow study but what they do is have him drink some juice with barrium (spelling?) while under an x-ray machine so they can watch what happens when he swallows. We were hoping the tests would help explaine why Cj wants to eat but he won't swallow his food, he just chews it up and spits it out. Unfortunatly the tests did not show us anything, except that he did have some minor refluxing but we knew that might happen when we loosened his fundo over the summer so we were glad that we chose not to loosen it more. Anyways I suppose it's back to the drawing board. We also chose not to have him scoped through the GI clinic and cancelled that appointment due to the fact the Dr. Ostile is not sure that there is anything that he could fix surgically. He did say that he would present his case this Friday during a meeting with other doctors to see if he could maybe get some suggestions on why he retches so bad when he has his tube feedings so maybe we can get some insight with that! if I hear of anything I will post.

September

2008-09-21T01:05:00.002-05:00

I can't sleep!! I really don't like this month and would completly skip it altogether if I could. Not that I want to remove the memories for they are so predcious to me I would just love to remove the pain. I still rememeber everything so vividly and the closer we get to the 28th the harder the nights sttll get. You would think that 7 years later it would get easier and I keep waiting. I still remember the sono guy (Jason) telling me that there was no heart beat and the look on his face when he said he would look again or maybe he saw the look on my face. I remember not knowing how to feel and my ob asking if I was ready to hold her and I told him no and the nurses bringing her in anyways I am so gratefull that they did because those moments with her were amazing although too short. I wonder sometimes if she would have had the same personality and interests as Nikki or if she would have been just the opposite, or if they would have looked the same. Nichole speaks of Madison often and comments that she wishes her sister was alive still so that they could play dress up together and it makes my heart ache. Last year in kindergarten the kids all drew pictures of their families for a quilt and Nikki had drawn an angel in the sky to represent Maddi and it made me wonder if she still felt her presence within her. I will always remember Maddi and she will hold a special place in my heart forever.

Photos

2008-09-20T21:40:00.002-05:00

I finally dumped my camera onto the computer so there is alot of photos that I want to post as I try to get udated so hopefully it won't be too overwhelming with photos but I sure love to brag.

Surgery Appointment

2008-09-19T19:32:00.002-05:00

Cj has an appointment on Tuesday the 23rd. I beleive that they are going to scope him so that we may be able to hopefully find out why he isn't swallowing his foods. I thought that I knew exactly what was going on with this apt. but then GI called about doing a similiar procedure so now I am all confused. I suppose we will find out when we get there. Anyways I will post more next week.

Busy,Busy,Busy

2008-09-10T21:03:00.000-05:00

Life has been very busy these days I suppose probably since school started in August! We had made a decision when school got out in May that we were not going to put the kids in any summer activities and just take some time off (which we later realized was not such a great idea). So needless to say when school started we got really busy with all the activities. Nikki has been in piano lessons all year and so far loves it. We were able to get her a great piano off of Craig's list which helped spark her enthusiasm in practicing. She is also on the competition dance team this year which requires 6 hours of practice every week. 3 hours on Friday nights and 3 hours on Saturday mornings, she also has girl scouts on Wednesdays.

Conrad on the other hand lives a much slower paced life, he just started his first year of karate on Tuesdays and although he did have some apprehensions going in, he has found the he really likes it. I do however remind him that he is not to use his karate on his sister (allot) I'm a little nervous but at the same time thrilled that he likes it.

James and I are also teaching our first Financial Peace University Class (Dave Ramsey) and it is going great we had allot of interest in the class and have several couples and individuals taking the class with us. We are very excited to help others as well as ourselves learn how to have financial peace in there lives.