Day 1

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

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

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

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.

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

Karate Tournament

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

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

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

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

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.