Slumber Party

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

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

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.

Getting ready for a ride.

Nikki's mud socks and gloves.

Looking for crystals.

Mom.

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

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.

I'm Back

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

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.