Getting There

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

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

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

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

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

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

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.