Wednesday, December 31, 2008

So what are your plans????

Well I hope that everyone has a wonderful time ringing in the new year. I cannot believe that 2008 is really coming to an end. But I think I'm ready for a new year as well. What a roller coaster 2008 was. It all started for me in April when we first went to the asthma clinic to try and get Carson some help. I will pray that 2009 will bring more answers to his health and a lot less doctor and hospital visits.

As far as Coltan, wow, I have seen him change in the course of a year as well. He has gone from a silly boy to a young man. He loves playing soccer and does so well in school. So far last year and this year, I have received a bumper sticker in the mail for him being on the honor roll. He is really good at singing and entertaining Carson for me while we are giving him a breathing treatment or trying to change his tape on his NG tube. Thank you for all of your help with Carson. I cannot tell Coltan how proud I am for that.

Cody, well Cody is stuck in the middle and some days I think he is challenging that. He has gotten taller, cuter, and more responsible. His soccer has progressed to a level that I'm still in denial about. To have a child in a sport and to be told that he is literally one of the best soccer players in the Midwest....what an honor. He has also grown up where Carson is involved. He has tried to step up and help with his breathing treatments, inhalers, and now his feeds. Mommy is very proud of you as well.

As far as me, well I'm praying that I will be getting out of the house more in 2009 and not just for doctor appointments. I really want to get back to work and focus on having a successful business. As far as Charlie and I??? We will see. We have had some good talks over the last few weeks and it is really nice to be able to sit and hold each other and talk about what we have to be thankful for. (CARSON) We have a very long way to go but we are certainly going to leave the door open and see what happens.

As for tonight, I'm not sure if Charlie is coming down or not. He went to the doctor yesterday and she prescribed him the Z pack. So we might need to wait another day before he comes down. The last thing we need is for Carson and I to get sick. That wouldn't be good. So the boys and I are going to hang out and maybe try to bake some cookies and rent a movie or something.

I have put together a few pictures over this year and I'm just amazed that in 12 months the boys could all look so different.

This is the train that Santa brought. Charlie and Carson have had a lot of fun playing with it. Cody wearing his fun shirts. He is always wearing shirts like this and all I can do is laugh.

Coltan hanging out

Carson looking out the window bored while he is getting a feed.

Carson's diaper leaked and soaked Charlie at the hospital. So Charlie had to strip down and wear a gown while his clothes dried. Pretty dang funny if you ask me. I told him that God works in mysterious ways and does have a great sense of humor.

This was Carson after his Nov 25th surgery. Does he look like a child that is getting ready to have a complete meltdown and stop eating? I'm baffled myself over this.

Cody hanging out and having a good time with mom

This was the boys this summer. Coltan with no hair and Cody with a lot

Coltan with all of his hair just one month before cutting it all off.

This picture was taken in March. Look at how much Carson has changed in just a few months.

Tuesday, December 30, 2008

Christmas Pics Part two and playing catch up

Well first off I just wanted to update everyone about Carson. Charlie came down on Friday all day which was also Cody's birthday. He managed to get him to eat a little here and there. The frustrating part is that when you add up all of the calories, he only ate 334 calories all day. So then Saturday Charlie came back down after work and we had a nice quiet evening with Carson. I was unable to get him to eat for me all day and Charlie managed to get him to eat around 250 calories worth of Lucky Charms, pineapples, peach cup, jello, and part of our meal. I ended up making chicken Parmesan and Carson did eat a couple of bites of our chicken and he ate a few noodles with the sauce on it. His weight on Saturday was finally back up to 11.7 kilos (it went down to 11.5).

Sunday Charlie took a vacation day and got here around 1:00 PM. Before he arrived, Carson had gone to sleep the night before for us around 9:00PM. He woke back up around midnight and didn't go back down until 2:00. I fed him at 2:30 and I laid down around 3:00 AM. He was back up for good around 5:00AM. Now around 10:30 AM Carson pulled out about 6 inches of his NG tube and all by myself, I had to hold him down and take the tape off, put the tube back in and re tape it. Carson was terrified the whole time and guess what he did? Yup, passed out. This time he was out for 6 minutes. I called the nurses hot line and they contacted the doctor. The doctor basically said that if they don't see whats going on at that moment, they won't be able to give me a diagnoses. So we stayed home. How frustrating this has become.

Charlie showed up and all I wanted to do was sleep. Charlie and Carson played with his new train and Charlie played catch up on my laundry. (it wasn't that bad since Coltan and Cody haven't been here)When I woke up I got to take a very long hot shower and didn't have to worry about where Carson was. (oh the little things in life). Charlie started having problems getting Carson to eat. So far he was the only one who was getting him to eat at all. So now we are even more frustrated. I made some apple stuffed pork chops and twice bake potatoes for dinner and Carson wouldn't eat any of it. I thought he might like the apple stuffing but we couldn't even get him to try it. So since Carson had been up since 5 AM, he finally gave up around 7:30. Charlie carried him to bed and left around 9:00. I thought to myself that I should probably lay down and I did around 10:00. I then got up at midnight to feed him and back down at 12:30. So guess who decided to wake up at 1:15AM. So yesterday was a very stressful day for me.

I called Ashley in the cardio clinic first thing yesterday morning and she scheduled us for March 6th. Not okay. So we finally got Feb 9th and we will be placed on a cancellation list for something sooner (keep your fingers crossed).

I also talked to Dr Robertson's nurse about Carson and she actually talked to me between three phone calls for over an hour. She was very intuned with Carson's case and talked to Dr Robertson and called me back. I'm under the impression from my phone call that we were actually discharged by a medical STUDENT of 7 months. Dr Robertson was not okay with this. She was so upset that she has personally called Patient Advocate and they will be calling me today. She said that is the main reason for me not knowing about the Left Ventricular Hypertrophy. She said that failure to thrive could be a result of him having the LVH (great another red flag). But she wants me to stay calm until they do the sono because if he is just starting to have this condition, it could be a simple fix. Hypertension is a sign and when we went back on some of his charts, there have been times where he had a blood pressure that was elevated. So I'm trying not to worry but I think every mother reading this knows that is next to impossible.

So Carson went down last night around 8:30 and my boys finally came back home. They are staying with me this week and then they don't go back to school til like the 6th. We ended up watching a movie and just as I was sneaking off to bed (at 11:00PM), Carson woke up and stayed up til 4:30AM. I did his 4AM feeding and then I was up again at 8:30 for his next feeding and then he was up by 10:00......sigh......

Charlie has been sick the last two days and he is going to the doctor today to get something for it. I need him better asap because these last two days have been horrible. I feel like I'm walking around like a zombie.

Now that the boys are home I'm hoping maybe I can sneak in a few naps in the daytime but usually what happens is Carson follows me around the house and it is usually not an option. I will be able to enjoy having all of my boys home though so that is good.

I will try not to wait so long for the next update. I did want to tell each and everyone of you again that I really do appreciate all of your prayers for my family. It is so nice to get the comments, e-mails, phone calls, and visits. Please know that there is never a bad time to call or come by. Again, it is what keeps me sane. Oh the delights of having another adult in my house!!

Now I will leave you with some more pictures of Christmas. These are some of my favorites as well.

Carson kissing his girlfriend Melana

Carson's other girlfriend Rachel and him were playing pop the bubble gum bubble

Melana not liking Santa at all.

Isn't she beautiful!!!!

Cody opening presents

Coltan opening his presents

I thought this was a cute one of Coltan and Carson

This is my Papa Clyde. He is my only living grandparent and I'm very blessed that the boys get to have a relationship with him.

Christmas Part 1

Once again I cannot choose which pictures I want to post so I'm going to post several for everyone to enjoy. Since I haven't posted many pictures lately, well now I'm going to play catch up.

Christmas Eve we thought we were going to be in the hospital for Christmas and with everyone pulling together and praying very hard for Carson, we ended up getting to come home late on Christmas Eve. Since we aren't suppose to leave the house, Carson and I sat at home and hung out. Jessica and Chris brought all of the kids over after church and had a few gifts for Carson. He ended up getting the doodle pad (pretty cool if you ask me), and some match box cars and a couple of Scooby Doo Movies. All of them stayed for a about and hour and half and then they all left.

Christmas Day I decided to go ahead and have my family over. My brother in law and his kids, my father, papa, mom, step dad, niece, sister, aunt, cousins, and my dear friend Rachel and her daughter all came over. Since Carson wasn't able to to get out and see Santa, he made an appearance here at my house and delivered Carson's gifts. It was so nice of Santa to take the time out of his busy schedule and stop to see Carson. It turned out to be a very nice evening and hopefully my boys had a great day.

After the bulk of family left, Coltan, Cody, and Carson did Christmas with me. I ended up getting some PJ's because everyone thinks I needed some with all of the hospital stays. I also got a sewing machine. I'm pretty excited about this one. I haven't sewed since my grandmother was alive but it is something I have wanted to start doing again and I need curtains in just about every room so that is going to be my first fun project.

Coltan and Cody got new winter coats and some Play Station games and WII games. I also gave each $100.00 so they could buy the phones that they are looking at. So I hope that the boys liked everything and feel like they had a great Christmas with me.

Here is Santa with my three boys.

Boys will be boys

Carson dancing to Signing Times videos.

Still dancing to Signing Times

My cute neice Aspen enjoying her Aunt Kaci's cooking!

Uncle Jake telling Cody funny stories.

Carson eating cranberry sauce off of my neice Ally's plate

Coltan acting thrilled.

Carson would eat very little all day but Uncle Jake convince him to have a little off his plate so that he could get big and strong.

Sunday, December 28, 2008


Well I wrote a scheduled post for Cody on his birthday and for some reason it didn't post. I must have wrote the wrong date on it. So anyways, Cody turned 13 on Dec 26th. I now have 2 pre-teen, teenagers in my house. It depends on what you consider a teen.

So I just wanted to tell Cody how much I love you and how proud I am of you.

13 years ago I was chasing your brother around the house (he was only 10 1/2 months old) and we had Christmas at my Aunt Linda's house. I came home and chased Coltan around and put him on my bed in my room and started cleaning out my closet. (red flag right?) The funny thing about this day was while Coltan was sitting on my bed my phone rang and it was close to midnight. I answered the phone and the other end said "911, is there an emergency"? I didn't realize that Coltan had the cordless phone and somehow dialed 911. So I finally got him to go to sleep and finished my closet. It was close to two in the morning when I decided it was time for bed. My due date with Cody was Dec 29 and long behold, 4:30AM I started having contractions. I called Chris (he worked nights) and told him that I was in labor. I then called my mom who decided to drive over in a 1979 Corvette with NO GAS. I called Chris' mom Ann who came after Coltan. Everyone lived 5-10 minutes away from us. So Ann grabbed Coltan and took him back to her house and my mother drove us to her house to get another vehicle. My step dad woke up and drove us to the hospital. He decided he was going to run every red light because he didn't even have 700 miles on his new vehicle and there was no way we were having this baby is his new car!

I got to the hospital and was already dilated to a 7. Cody was so easy. He was delivered at 8:35AM and I was actually pushing and talking and laughing with the doctor. I remember saying to Dr Tarauno that if all deliveries were this easy I was going to keep having babies. (Carson has since changed my mind).

So Cody, there is your readers digest version of your birth story. I cannot believe that your already 13. How time flies. I look at you today and just sit in awe with you. You have been such a wonderful big brother and I just cannot thank you enough. Thank you for choosing me as your mommy.

So Cody wanted to go to Coby's Steakhouse and I didn't go because Charlie and I had a lot to do before the birthday boy arrived. Charlie and I fixed taco's for dinner so we could sit down with Carson and eat as a family. Then Cody wanted banana pudding and I decided to make a chocolate cake to go with so we all had something good to eat. Dinner reservations were for 8:00PM and Jessica and Chris brought my two and their three back to my house for cake and presents. My dad and my niece also came to.

Here are some pictures.

Here is the cake that I made and Charlie iced and decorated. I was busy making the banana pudding.

A great picture of Coltan and Cody with their brother Boe.

Cody decided to make several wishes and he blew one candle out at a time.

We asked Cody what he wanted for his birthday and he told us Coke and Fudge Rounds. So Jessica thought she'd be funny and wrapped it for him.

Here is an I-Phone for his I-Pod. Now he can listen to his music in his room while he is "cleaning it".

Cody has a Playstation 2 and a WII game and he only wanted Playstation games.

Happy birthday Cody. I hope you had a great day!

Friday, December 26, 2008

I need some help please......

Okay, so I'm on the phone talking to my mother and she asked me what time Carson's appointment was going to be in regards to the Cardiologist appointment. I was looking over the discharge paperwork and found a diagnosis on the sheet. I never saw it until 10:00PM tonight. The sheet says they have determined from his EEG that he has Left Ventricular Hypertrophy. Does anyone know anything about this? Does your child have this? Are there any nurses that are reading this? Everything I have read so far looks very scary. One thing I read off of American Heart Assn states that 40% of children with this will either die or be in need of a heart transplant. My private e-mail is If you know anything about this and have the time, please e-mail me either some info or your phone number.

I'm sure as you can tell, I'm very nervous right now and Carson has actually gone to sleep but now I cannot.

Thanks in advance to anyone who can help.

Thursday, December 25, 2008

Just wanted to say MERRY CHRISTMAS!!!!!

Just a quick shout out for everyone. I'm in the middle of cooking, cleaning, and chasing after Carson, but I wouldn't want it any other way. I'm truly blessed to have my three beautiful boys and a very big and loving family. We will all meet at my house today between 3-4 for dinner.

I wanted all of you to know that today is such a great day. I'm home with Carson and I honestly believe that it is from all of the prayers that came from each and everyone of you!!!

I hope everyone has a very happy day today. Please drive safely if you have to because I know a lot of places have had snow and ice lately. May everyone's day be super blessed.

I cannot tell you all how wonderful you are and how blessed my family is to have found each and everyone of you.

From my household to yours..........MERRY CHRISTMAS



Wednesday, December 24, 2008

Were home, but not all good news

First off I want to thank everyone for you strong prayers. God did listen and we were allowed to come home. Partly, because Christmas is tomorrow and all the clinics were closed.

Next I want to tell Amy from Kaden and Angel Ave and Rachel from Love for 9 thank you so much for posting on your blogs. This blogging community has been so surreal with all the love and compassion for my family. I cannot tell you how much you guys mean to me.

I also want to tell all of the other bloggers who left comments thank you as well. Your support has helped me stay focused. I find myself questioning God's decisions but all of you make me realize that we are in God's hands and he is going to guide us through this. What a better day to figure this out!!!

So now back to Carson, when I left off yesterday I took him to Children's Mercy South which is a hospital but it is an urgent care only place. Most of the patients there are stable kiddos as well as observations from minor surgeries and sleep studies, PH Probes, and other things like that. They are never very busy so I called the home health nurse and asked if Carson could go that route since they are always way less busy. She called them and they said yes bring him in and that there was NO waiting. That was a plus. So as I was driving there I was updating Jessica what was going on (Coltan and Cody's stepmom) and Carson was watching his Signing Time video. We got there in about 20 minutes and while I was talking I realized that Carson was asleep. I told Jess I would call her back later and went to grab Carson. As I was unbuckling him, I about fell over because I knew Carson wasn't sleeping. I grabbed him and ran inside and laid his limp body on the counter. 10-12 minutes later the crowd of nurses and doctors had him awake. He woke up and at first he was disoriented. Then he was scared. So they took him back immediately and the Dr came in and did a thorough history. Then she looked at the computer and read over some of his notes. She came in and had him hooked up to an EKG and they also did a blood sugar. After about 20 minutes, she came in and told me that she had called Children's Mercy Downtown and consulted with the Red Care team and she had ordered an ambulance to come pick up Carson and transport. At this time she was thinking some sort of seizures and told me that South didn't have anyone there at that hour to perform and that he needed to go downtown where they have every specialist there 24/7.

So the very cool ambulance arrived and off we went. When we arrived at the downtown campus, we went straight up to our room. Two doctors came in and we discussed everything. They then ordered an EEG and sent it down. Then as we kept Carson hooked up on the heart monitor they inserted his NG tube and finally at 2AM, we started back on his feeds. So this morning a whole group of doctors came in and talked to me about what our goals were going to be. At first Dr Livingston stated that she wanted Carson to take the NG tube out and let him eat today with out it. She said if he still wasn't eating that she would put it back in tomorrow. Then we had OT come up and watch him eat. Also a dietitian came in and we went over some ideas on how to help Carson since he has lost weight. After that we sat around and waited for the Cardio clinic to come down and get Carson for his sono of his heart. At this time they told me that since we have only had two episodes with Carson's unresponsive behavior, they didn't think we would find anything on a MRI. She said if he relapses and has another episode, they would rush him down and get one so we could see it as it was happening.

So the good news is around 4:00PM tonight the doctor came in and said that they didn't know that Cardio clinic had already closed down at noon and would not reopen until Friday. They are going to schedule me something within 5 days. I said that was fine. She then said it was very important to follow up with the cardiologist. I said fine. Then she said that we needed to figure out what the problem was. I then asked if she meant overall or his heart. The doctor said (like I already knew) that there was some questionable areas on his EEG and his EKG. So she was telling me that she thought he has something wrong with his heart. I asked that if what they think is confirmed can it be treated by medicine and she said I should wait and talk to the Cardiologist. So yeah we get to come home but now I must wait with all of this worry and guilt that I should have figured this out a lot sooner.

I'm going to be a crazy person and go ahead and have many people over tomorrow for dinner. Since I'm not suppose to leave my house with Carson, I will bring everyone here.

Tonight my mother was suppose to have the gift exchange with my whole family and because we thought Carson was staying, my aunt Mary took over. So tonight I decided it was best to stay in with Carson and we are going to get on the couch and snuggle and find a good Christmas movie to watch.

Coltan and Cody stayed with Chris and Jessica tonight and went to church with the grandparents. Jessica was actually on her way up to the hospital when I called her to tell her we were discharged so I believe she is going to stop by with all of her kids and mine so the boys could see their brother. Then I think Coltan and Cody are going to spend the night with Chris (Santa has always stopped by their house) and have an early dinner at Chris' mom's house and then back home to me for my dinner. So boys, don't fill up cuz your mom is making an extremely crazy spread. We are having a turkey (wish me luck, I have never made one before), I'm baking a ham, homemade mashed potatoes, potato casserole, a couple of salads, green bean casserole, stuffing, dumplings, and I'm going to try a couple desserts from my previous post.

I hope everyone has a wonderful Christmas and may everyone be safe and happy.

God bless you guys. I will hopefully finally download some pictures for everyone to enjoy.

Update on Carson...

This is Amy, I am updating for Kaci's since she doesn't have her laptop and really doesn't have the time right now to post. I just got off the phone with her and unfortunately they are still admitted and will be until at least tomorrow. After taking Carson to Children's South they transferred him to Children's downtown. The doctor at Children's south thought that he could be having silent seizures, however they will not be able to test him unless he has another one due to having only two episodes in the past. So if he does end up having one they will do an EKG (I hope that is right, I get a little confused with the heart and brain "tests"). The doctors also wants to try taking the NG tube out and seeing what Carson will do on his own. If he doesn't eat well, they will replace it tomorrow. They will also be doing an ultrasound of Carson's heart to make sure that there isn't any problems in that area.

Please keep this family in your prayers.


You and your boys are always in my thoughts and prayers. I hope that you and Carson will make it home tomorrow (EARLY) so that you can spend Christmas with your family and be able to celebrate Cody's birthday on Friday as a family.

Tuesday, December 23, 2008

Heading back to the hospital

Please send prayers our way. My friend Denise came over and got caught helping me put Carson's NG tube in. He had spilled water all over his shirt so I had him on the couch and we were saying bye to Denise and then I was going to put a new outfit on him. As he stood up he fell back down on his tube and pulled his NG tube out again. So we all gathered around to place it in again and there was blood on it. I didn't think much and placed it but there was resistance when I tried to listen for the air. I wiggled it around and couldn't get it. So I called home health and they thought there was a kink in the NG line. I flushed it and didn't have any resistance. I placed it in him a third time with the same problem. He is also going limp on me again so the nurse said to take him to the ER and have them hook him up to an EKG and let them place it. He is down to 25.4 pounds today so instead of admitting him, we are going to add a sixth feeding. With all that is going on, I hope we do get released. So please send lots of good thoughts our way so I can get us back home.

Monday, December 22, 2008

Still Hanging in there....

Well I had a lot of visitors over the weekend which helped out a lot. Visitors are always welcomed since we are home bound. (Did you hear that Denise and Rachel? :-) )

Saturday my niece stayed over here most of the day to help out with Carson. He is still not wanting to eat or drink. Charlie's brother Damian who is a doctor suggested last week to give Carson some water but add a little apple juice in it to add some calories. Carson is to smart and saw right through that. I have just went back to giving him plain water and now he says that it taste nasty. I got him to eat a spoonful of peas and a peach cup and I don't even think he drank 2 oz. of his water. That was it for the whole day.

My sister and her friend came over while Aspen was here and she bought him the Dr Seuss Christmas DVD. My friend Casey came over to check on him as well. Casey is the Time Warner repairman that always ends up at my house every time something is wrong with my cable. He has grown to like Carson a lot since Carson follows him around and calls his van the ice cream truck. He has really turned out to be a good friend and I can tell he is really concerned with everything that is going on with Carson. He sat with Carson and played trains with him for the whole feeding and they had a ball. Then my dad came out for a while and of course my mom and step dad. So my house was pretty full which helped my insanity a little bit.

Carson finally fell asleep around 10PM which I was excited about. Bad news, he woke up screaming around 2:00AM and then we didn't go back to sleep until almost 5:00AM. So Sunday morning we didn't wake up until almost 10AM which was fine with me. It was nice to get that much sleep. So then the challenge was on again. I think I poured Carson 4 different bowls of Lucky Charms and he would only eat one or two bites and then tell me he was all done. I would try to beg and plead with him and nothing. I would end up throwing the soggy cereal out 20 minutes later. Then a couple of hours later that is what he wanted again. I tried bribing him with hot dogs, turkey, ham, bread, gold fish, pretzels, peach cups, applesauce, jello, I think you see where I'm going with this. He ended up eating a couple of crackers when my good friend Rachel (Love for 9) showed up. I'm getting even more worried because every since the little episode on Friday happened, he has completely shut down.

So back to Rachel!!! She brought out her daughter who is 16 1/2 months old and Carson and her played for a couple of hours. It was so nice to sit and play catch up with her. The kids did awesome and I'm probably in big trouble with Rachel because I haven't downloaded the pics yet and e-mail her. I have some pictures of the love birds giving hugs and kisses. It was so freaking cute. Then Melana wanted to go down the stairs and she only knows how to safely slide. So Carson would sit and show her how to slide. Melana was a little mean and bonked Carson in the head so he told her Lana Mean. It was pretty cute. We ended up having a really good time. Hope we get to do it again real soon.

After she left I tried catching up on my last weeks soaps. I know very exciting and yes, I don't stay current trying to keep up with Carson and his feedings, breathing treatments, doctor appointments, and sitting with him most of the day in the kitchen begging him to eat and drink for mommy.

Carson went to sleep around 9:30 while laying in my bed during a feed and we were watching Signing Time "Happy Birthday" . So I figured if I was smart, I would finish the feed and lay down as well. I woke up at 2 to give him his last feed and back down at 2:30 and Carson was up again at 3:00AM crying and telling me he was scared. I calmed him down and got him back to sleep around 4:30 and then he was back up around 8:30.

As of today, well I have finally gotten him to drink about 4 oz of apple juice but I'm giving it to him through a medicine dropper. He had to take some other medicine so I kept sneaking it in there as well. As far as liquids....nothing yet. Now for the bad news, Carson has dropped 2oz since last Wed. SIGH.........Home health came out this morning and gave me that bad news after we weighed him.

Please pray for my little Pork Chop. I don't want everything that has happened over the last few days set him back. If we continue to lose weight, well that will be an automatic admission when we go back. I'm praying that God will put his healing hands around Carson and allow him to feed and drink on his own. I'm praying for myself as well. I'm praying that I can keep my strength up so I can get Carson through this. Of course I'm praying that Coltan and Cody continue to be the wonderful brothers that they are.

Coltan and Cody went to their dad's house Friday and I remembered it was Jessica's birthday on Sunday and she wanted the boys to stay so they could go eat some good pizza. Well they drove up to the restaurant and it was closed on Sunday's. So they ended up going to a really good steakhouse and ate there instead. So even though I told her yesterday happy birthday, I just wanted Jessica to know that I really do appreciate everything you do to help me out. You have made a lot of Carson's issues easier by helping out with Colt and Cody more. Jessica and I actually graduated in the same class so I have known here for 20 years. She is truly a great step mother and the boys and I are very lucky. She is what I would consider a very good friend and so I just want to tell her THANK YOU.

Now I'm off to attempt to feed my little Pork Chop. Wish me luck.

Saturday, December 20, 2008

The trials of my life

Why is it that when we finally get rid of one set of problems, another one replaces it? I keep asking myself this and just cannot find the answer. I completely understand that there are other kids that are much more ill than Carson and I should feel blessed. Don't get me wrong, I'm very blessed to have all three of my boys in my life. I'm just feeling down on my luck right now.

Charlie has been over here everyday this week and I'm very happy that I have gotten that kind of commitment. He actually ended up spending the night last night because Carson did pull out his NG tube in his sleep. Last night we had to replace the tape on it and with the help of Cody and Charlie, I was able to get it done. Carson would holler through his crying that he loved us and please stop. Carson had put up a real big fight and then he just passed out. Charlie picked him up after I was done and he woke up and was crying. Charlie did get him settled down and about 10PM he fell asleep. I still had two more feedings to give him. I gave him the first one around 11 PM and Charlie and Carson slept through all of it. Then the last one was around 3AM and I started it and laid down. Around 4AM Charlie woke me up to tell me that his NG tube was completely out. I'm not sure what happened because I taped it pretty good. So instead of waking him up, I thought it would be better to wait until morning. I asked Charlie if the feeding was done because if not, it would leak everywhere and he checked. Somehow when he got up, it woke up Carson and he was scared to say the least. It took us til almost 6AM to get him to go back to sleep. He would start to close his eyes and then he would open them and tell Charlie or I that he loved us. Then he would close his eyes and open and tell the other parent he loved them. I just cannot tell you how sad I am to watch him be so petrified.

He slept in til almost 10AM and I just wanted him to sleep because I know he is so stressed out. Charlie did get him to eat enough cereal with a lot of milk on each spoon that we felt confident enough not to have to feed him through the tube. So that was some of the best news yet. Then I had an appointment with Carson to check his iron level at 2PM so Charlie and I waited until 1:30 to put the NG tube back in. Charlie was planning on leaving after that. It was a little bit of a struggle and then Carson got real quiet and passed out again. When he woke up I asked him if he was ready to leave and he wanted his daddy. So Charlie said he would go with us which was good since they were doing a finger poke. The appointment didn't last that long and his iron level is 11.5. They wanted him to be at least an 11 so we passed. I'm sure that the Pedisure helped out a lot to boost that number up so we were in the clear for that.

When we got home, Charlie was able to get Carson to eat a peach cup, one hot dog, and some chips. We weren't so lucky with getting him to drink so we had to hook him up to the feeding pump. As he was sitting in his chair, Carson gave up and fell asleep. This is something that doesn't happen often very often. Well it only lasted about 30 minutes. Charlie left when he fell asleep because he hadn't seen his girlfriend in 4 days. When Carson woke up we struggled with the fact that he wanted his daddy and I lied and told him daddy had to go to work. So here I am trying to help Carson out and I just feel so bad for him because now we are in the middle of a meltdown.

So around 5:30 Carson pulled part of the NG tube out. Not completely and I placed it back down into his stomach and taped it back up. Carson went limp again. My niece showed up and Carson woke up long enough to call out Daddy. I told him no it was Appy. He justed went limp again. I placed him on the couch and he just laid there. His eyes were open and he was just staring into space. I called home health and had them paged. In the meantime Aspen called my mother who in return called Charlie. Charlie called me and I was pretty upset at this point because Carson just wasn't acting right. All Charlie could say was call me later and let me know what they nurse says. Aspen left and I sat there for a couple of minutes trying to get Carson to snap out of it. Finally the nurse called and said hang up and dial 911. Luckily the fire station is less than a mile from my house and they were here in under 2 minutes. 3 fireman and 2 paramedics walk into my house and it took them a few minutes to get Carson up and around. When he came to, he started crying for his daddy. I ended up going to school with the medic so it became more personal for him. He took very good care of my baby. Carson was so out of it that they wanted to poke his toe and get a blood sugar and Carson just laid there and didn't even have a reaction. I called Charlie and told him that the nurse had me dial 911 and left it at that. Charlie called while the medics were here and I told him we were heading back to Children's via ambulance.

Now Children's is about a 30 minute drive and Carson finally started perking up which made me feel so much better. They had him hooked up to an EKG and his heart was going a little fast. It was running about 150 and his pulse ox was 92. While in route his heart slowed down to 120 and pulse ox came up to 95-96. When we got to the hospital, Medic Jim carried Carson in and stayed with us for about 30 minutes. You could tell he was really concerned about my little boy. Carson and Jim have a date at the firehouse in a few days to get his picture taking with the fire truck!!

So Charlie shows up after 8:00 and the first thing out of his mouth is "Carson doesn't look sick to me". I said well his sinkable episode happened over two hours ago. So then I asked him if he happened to have his car seat with him and he said no. I told him that I didn't have mine either. He asked me why not and I said I came in the ambulance. Charlie then gets rude and tells me that he didn't think his insurance would pay for that and I should have drove him myself. Now I'm going to have a 800.00 ambulance bill. Um hello, should I be worried about Carson's health or the possibility of him having an ambulance bill? So finally I said to him that he shouldn't be mad about my decision. I was by myself and I had to make this decision alone. If he didn't like it maybe he should have been there with me to help me. He told me to shut my mouth while I was ahead. So his disrespect and uncompassion for his son's health continued and I finally just told him I was sorry that I ruined his evening with his girlfriend and that he didn't need to be there. Not once did he act concerned that something was really wrong with Carson. He told me that when my mom called him to tell her that she was en route he said he was with his daughter having dinner and would drop her off and come down. So while in the hospital I asked him if he had a good dinner with her and he shrugged his shoulders. I asked him if he told her that Carson was really sick and he said yes. I asked if she looked concern and he said no. So basically she doesn't care at all. He even implied that she was mad because he had to cut his date short with her to come to the hospital. My two boys found out last night and Cody was on the phone crying wanting to make sure his baby brother was okay. So anyways Charlie told me that he thought it was awful coincidental that he left to go see his girlfriend and then my son has a mysterious fainting attack. I told him that I was insulted that he would even think I would drum up something and I told him not to flatter himself that I wouldn't have gone to the extreme of calling an ambulance just to ruin his date with his girlfriend. All he did this morning was complain that Andrea doesn't like me being down here so much and now I have to explain to her why I spent the night. She isn't going to be happy. I simply told him that she "knew" about me for the last three years and she knew we had a son together. She knew what she was getting herself into and if she can't handle it, move on. I told Charlie that if wants to stand in my house and defend her, get out. So he thought because of this previous conversation that I was making up the whole fainting spell with Carson. Long story short, I ended up taking Carson to the nurses station and asked for security to be called. Charlie left screaming at me that I was crazy and the reason he cheated on me was because I'm worthless. Then he said he was never giving me another penny again and we were done and he didn't care less about Carson. Carson then had a complete meltdown and couldn't' catch his breath. The nurse brought in a nasal cannula and put him on low oxygen until he calmed down.

So here is the kicker, Carson had apparently gotten ahold of a house hold cleaner with bleach and somehow ingested it. There really WAS a reason for Carson's unusual behavior. They ended up taking a syringe and pulling out his stomach contents and gave him some stuff to drink. We then did a urine and then we were discharged. So see, I didn't make all of this up so Charlie could have his evening cut short with his daughter and girlfriend. The kicker in all of this........Carson would have ingested it while Charlie was still with us. When I did his feed, it pushed whatever it was down into his stomach and that is where Carson started showing signs.

So I going to pray today that I can now take care of Carson by myself. Charlie doesn't believe that it could be psychological but I have a child psychologist, my primary doctor, and even his brother who also is a doctor all agree. The feeding team was paged last night and they think it is probably best that Charlie keeps his distance. He is absolutely an unstable person in his life. He told me last night that Carson is a priority but so is Andrea. So if she has to come before Carson and his treatment, then he needs to stay away. The sad thing is now Carson has already had a relapse and I haven't had him eat or drink since Charlie has been gone. He wouldn't even eat Lucky Charms for me and now he tells me that water taste nasty.

I know that Carson can overcome this. I will put all of my energy in this and God will guide me through it. As I have said many times, this too shall pass.

Thursday, December 18, 2008


Sorry I didn't post last night. It ended up being a very long day again. I did something I usually don't do. I put all three doctor appointments on the same day. With the snow and ice storms in the forecast, the boys getting ready for x-mas vacation, and everything else, I decided one day of stress would be warranted.

So our first stop was our primary to get Carson's stitches out. He only had the two in his chin. Dr Tarvin saw me in the waiting room and so he grabbed Carson's chart and came and got him himself. Carson ran right to him and he picked him up and carried him to the room. Our favorite nurse Jennifer came as well so we could hold him down if needed. We took them out and Dr Tarvin picked him up again and held him. Carson was scared at first when we were holding him down and Dr T didn't want him having fears with him as well. He always hugs and loves on Carson and always tells him how much he loves him. Dr T has been my doctor since I was 15 and he is the only doctor Coltan and Cody have had as well. He is truly the best. So since this was one of the rare occasions that Carson could have his flu shot, Dr T said nope. He has been through so much and even though it has benifits,he didn't think emotionally Carson could handle more poking and prodding. So we left without the flu shot. Since he is home bound, we will keep our fingers crossed.

Next Carson went to Childrens for his OT appointment. We are refocusing his visits and instead of working on mostly his motor skills for his Sensory Processing Disorder, we are going to work more on oral skills. The special care clinic is concerned that now that Carson has the NG in, he will become lazy or to relaxed with his eating and drinking. Nancy is out of town for two weeks and Steve is taking care of us while she is gone. Steve was a very big kid and Carson loved it. They started off blowing into party favors and whistles. Steve acted like Carson was the "big, bad wolf" and every time he successfully blew the whistle, Steve would act like he was getting blown away. It was so wonderful to see Carson giggling and acting more like himself. He was so happy for the whole visit.

Last appointment, the dreaded Special Care Clinic. We weighed him and he gained 4 oz. The dietitian wanted him to gain at least a pound and a half back but since he gained almost a pound, she was going to let him slide. So I knew within the first 2 minutes of the appointment that we were going home. I then relaxed a lot. I knew that if I packed a bag, we would go home, if I didn't, we were staying. So I packed a "everything but my kitchen sink" so I would jink it and it worked!!!

The Dietitian came in first and talked to me about where she would like to see him when he comes back to our next appointment. She also gave me some suggestions about getting Carson to eat. To date, Carson is only eating 200-400 calories a day. A normal day is maybe a 1/4 cup of cereal, maybe a jello cup, I will fix him some sort of lunch and he almost never eats it, and what ever we have for dinner and it has recently been thrown on the floor. He will eat a few bites of a banana and gold fish crackers and that is about it. Then we are still refusing milk and some days he might drink 6 oz of apple juice which is a huge challenge and like today, the only thing he drank was 6 oz of water. At least now that he is on the Pedisure I know he is getting plenty of fluids but this is still pretty scary to me. She also told me that the part she is concerned about the most is since he did lost 3.3 pounds, most of it is likely to be water weight. Since we have been pushing fluids for a week in him through the tube, she had hoped he put more weight back on. So she said from here on out, the weight gain will most likely be slow. That is the typical normal.

Next was Dr Robertson. She is the medical doctor that oversees the whole team. She just went over a history with him and we also decided that we are going to take him off the Imodium AD for a while because now his stools are getting hard from all the iron he is getting through his feeds. Other than that, just keep giving him 32oz via the tube. She said if he has a very low weight gain by the time she sees him again, she may add one or two more feedings but we will have to wait and see. She said she wanted him back in two weeks.

Lastly, the psychologist came in and just wanted to touch base with Carson's home life and Charlie's position and also getting him in bed and not throwing food. She said that the throwing of food and not sleeping is definitely something psychological going on. She said he in acting out because he is worried or scared about something. He is yearning for attention and will get it however he can.

She then wanted to know what Charlie's involvement was at this point and I told her that he said he was giving Carson a 100% commitment. She wanted to make sure when the "newness" of Carson's situation ran off that he was still going to be here. She said if not, he needed to go away permanently. She is very upfront and doesn't hold back. We are still going to use the same plan about him throwing things and we aren't going to be as aggressive just yet with a bedtime ritual since I'm getting up at least once and sometimes twice to feed him in the middle of the night. I also asked her how much longer she wanted us to stay home and not take Carson out to different environments and she said she wants him to stay put and it is just something we will have to evaluate each visit. She doesn't want to rush it. She feels we need to improve some of his fears and behavior before we go out. That way he isn't acting out in public as well. She also doesn't want him spending the night anywhere but my house because if we are working on his bedtime behavior, it has to start in his own environment. This is now going to affect some of Cody's upcoming soccer tournaments. I'm going to have to figure something out quickly.

So tonight Charlie came down after work and we just ordered pizza. First off, I have cooked every night this week and Carson has thrown all of those meals on the floor. Secondly, this is as close to eating out as I'm going to get for a while since we are discouraged to going to eat in a restaurant due to distractions. I did ask him if he was going to stick around after the newness ran off and he said he would. I asked him even if this situation does last 3 plus months and he said that he would like to eventually have Carson come up to his house and I told him when the doctor thought the time was right but I would be there as well and he said that was fine. So I guess time will only tell. I told him that Dr Turnbough said that the first time that he isn't owning up to his responsibilities that I will need to stand my ground and keep Charlie at a distance. I will pray that Charlie will continue to see the importance of this situation and keep the attitude that Carson is and should be our number one priority. I have actually seen a little improvement when Charlie was over here tonight. Today, Carson ate 3 bites of a banana and one jello cup with no water. Charlie came over and he actually ate 3/4 piece of cinnamon toast, 1/2 of a slice of pizza and when we were ALL still up at 1:30AM he asked us for a bowl of Lucky Charms. He ended up eating 1/4-1/2 cup. YEAH!!! Carson really does love his daddy and he even though we always have a good time together, there is something different about his attitude when his daddy is around. I told Charlie that this should be a wake up call and I can't see anything but good coming out of this. Carson can see that he can count on Charlie and in the long run, it will build a stronger bond between the two of them.

Thanks again to everyone for all of your support. The comments, emails, and phone calls have been so welcomed. I will never be able to fully explain how much it means to me. You all are the greatest. Please keep sending prayers our way. Just because we got to come home today doesn't mean we are out of the woods. Dr Robertson said that we should plan on being admitted every visit if she doesn't like what she sees. She told me to not stress over it because it isn't necessary a bad thing. It would be more to work on adjusting his feeds so that they are beneficial to him. But to me, anytime your in the hospital, it is a very stressful time.

Wednesday, December 17, 2008

Quick update

Well it has been a very emotionally and draining week. First off, I would like to thank everyone for your thoughtful comments, phone calls, and private e-mails. It has given me a lot of hope that yes, I can pull through this for the sake of my three boys.

Carson is trying to get used to the NG tube but we have pulled it out a few times. It usually happens when I take his rolled up tape off to replace with new. He is so scared every time I go near the tube and he is now walking around with a blanket and places it in front of his face. I feel really bad because when he pulls it out and I have to replace it, he will start screaming mommy I love you , please stop. I usually end up crying with him before it is done. I'm really trying to stay strong for the both of us. Coltan and Cody have been great. Cody has actually asked me to teach him the feeding part and I usually let him do all of the steps (supervised by me) and then when he is finished, you take 5mls of water to wash out the tube and he will do the last step as well. I cannot believe how grown up those two are. They have really stepped up to the plate and I'm just not sure when they grew up........I have missed it.

Last Friday we had a really good time. The boys got to go to their soccer coaches house and we had a party and they received trophies for the fall league. Coltan plays on two teams with this coach and Cody plays on one. The two teams are on different levels and they both finished first. It was actually pretty crazy, there were 81 people all in one house. But it turned out really great. One thing that really touched me is Brad and Kenda are also the ones that introduced me to their church. Before everyone ate, he said a extremely nice prayer and it was all about Carson and getting him better. Everyone there was so loving and since they hadn't seen me in the last 5 weeks, made sure we were all okay and everyone offered anything they could to help us out. It is such a great group of parents.

Saturday the boys went to their dad's and I hung out with Carson. Now for the million dollar question???? Carson pulled out his NG tube and I was all alone. As I was trying to put it back in, he was crying for his father. I finally decided that it may be easier to put Charlie on speaker while I attempted to replace it. One reason, to comfort Carson, another, so he can hear what I have gone through for the last few days. Everyday I would get even more bitter and angry over this whole situation. I couldn't reach him so fair game, I called his "girlfriend". She heard what I was going through and wouldn't you know it, got Charlie on the first try. I did have a small conversation with her and explained how I felt about her coming in between my son and his father. I feel she and I have come to an understanding and as long as my son is first, she doesn't need to worry about me. I told her that if she can't handle Charlie at my house, move on. So Charlie did show up at my house Saturday night. It was perfect, Carson's NG tube wasn't in his stomach and it took him, my niece, and I with the guidance of the home health nurse to place it. I think Charlie "got it". He has since come over Monday, Tuesday, and will be back down tonight. I'm not okay with his behavior, but we are figuring it all out. I have a 100% commitment that he is going to help me with Carson and his son will be #1. I explained to him that that the doctor said Carson HAS to have stability in his life right now. So I told Charlie he is either a full time father or he can stay away until this is completely resolved. He states he is in it for the long haul and Carson will trump anything else in his life. The doctor told me that she doesn't want Carson in different environments. She wants him to stay in my house as much as possible. She told me that even going to a restaurant right now is a very bad idea. She wants no distractions when we are trying to feed him.

Our goal is to feed him foods first, then try to get him to drink either 6oz of Pedisure or milk. If he doesn't drink it or not all of it, I will put the remaining amount through his tube to total 6 oz. We do have one feeding in the middle of the night so I have been getting up every night to feed him. It is usually between 2 and 3AM and Charlie has stayed without me saying a work. I have no idea what the future holds for him and I but I think something clicked and I can see in his face that he is very worried about Carson. We actually were on the computer tonight looking at other possible problems that are causing all of this. He even took the computer away and continued his own research. We are out of suggestions.

So long story short, we have 3 doctor appointments today and I'm on my way out. Please send prayers our way so that they don't admit him today. Today is the deadline for getting some sort of improvement.

I will update you later, if we stay in the hospital, I will probably call Shari and ask her to post for you.

Friday, December 12, 2008

Good news and Bad....

Well I would like to start off with my great news. Coltan and Cody tried out again for the Missouri Olympic Developmental State team and I'm excited to say that they BOTH made the team!!!! Again, this is the team that Cody made last year that they only selected 18 players from the WHOLE state of Missouri and he travels for. I am just beside myself with joy and they coolest part is they will travel at least 4 times between Jan and July and I get to watch both of my boys play out of town in tournaments. Congratulation boys. Mommy is so proud of your accomplishment with soccer. We will start off in Lincoln NE in Jan for the first tournament. So stay tuned for those highlights.

Now for my sad news. I took Carson to the Special Care Clinic at Children's yesterday and he has managed to lose 3.3 pounds since Nov 25th. He has completely stopped drinking apple juice or milk for me. The only thing he will drink for me is water. But he is only drinking 10-15 oz a day. So we have had hardly any wet diapers for the last 3 weeks. This has been going on since basically Oct 31 when he had surgery. I have asked Charlie several times last week to please come down and help me because I though maybe he could convince Carson to drink for us. I just found out that he has been dating someone for the last three years (yes and I have been with him for the last 8) so apparently since she found out we were still seeing each other, she has forbid him from coming down to my house so Charlie has declined my requests. Now Charlie did offer to take Carson up to his house one day but I need to know he is taking all of his meds and when he is this sick, I'm staying with my son.

He did have that rotavirus last week so I thought this was also contributing to this situation. He has also started eating even smaller amounts of food. So the four specialist involved in this doctor's appt told me that they wanted him admitted yesterday. I started crying and asked if there was a back up plan as I have two other boys that I need to be with and I didn't plan for any of this and we didn't bring any clothes or anything. So the dietitian said the only way we were walking out of the hospital was by placing a NG tube in Carson. So that is what we did. I used to be an EMT so I'm not intimidated by this, just overwhelmed with another obstacle. The dietitian gave us one week (appointment is set for 12/17) and if he doesn't gain an amount that she is satisfied with, she told me to bring a bag just in case.

So Blue Cross Blue Shields will pay for the pump, home health nurse 3 times a week for the first week and 2 times for the next two and more visits if needed, and all the supplies. But they said no on the the Pedisure. So I went to Wal Mart and it is 9.97 for 6 cans. They said we will need approximately 106 per month. He will be on this for at least a month and they said prepare for 3+ months. Before he lost his weight, he was at the 7% percentile. After losing, he is not even on the chart. She said she won't let him off until he reaches minimum 30% but really prefers 33%.

Carson is really sick. This has become a very serious and dangerous situation with him and I wish certain people would "get that" and maybe put family first. The doctor and psychologist wrote down in writing that I was the only one to be with Carson at all times. If anyone wants to spend time with him, I had to be there to supervise as there are a lot of things that can go wrong with his feeding tube. It is really scary that if I don't check his placement or think I heard the swoosh and really didn't, that all his feeds can go into his lungs. WOW!!! So when I called Charlie yesterday and explained all of this to him since he did forget Carson's appointment all together (which is my fault because I did tell him about it on Sunday and Monday but apparently I was suppose to call him Tuesday night and again Wednesday morning and this is what he did say to me as he was blaming me) I then asked for some help with the Pedisure since I just paid $175.00 2 weeks ago on his one month supply of simply thick he never answered me. But he did tell me that since my house was off limits that if I could call him when the NG tube is out so he could make arrangements to see his son.

My mother apparently got angry enough and called him today. So he did speak to me and stated he would buy enough Pedisure through the end of Dec. I'm assuming he will drop it off at my work or with my mother since he cannot come down to see his son,

I know, I shouldn't put my "dirty laundry" out there for everyone to see but you know, this is my blog and I'm exhausted, and extremely overwhelmed. I have cried a lot this whole week with all of this news. If Carson wasn't enough, then to find out that the man that I have been in love with for the last 8 years is someone that I really don't know.

This too shall pass and God will guide me through this. I will look at him for peace and comfort so that I can concentrate on all three of my children. Because my family is my #1 priority.

Monday, December 8, 2008

Were finally on the mend

Well we finally got everyone better but it took forever. Carson ended up with Rotovirus and he still is having some feeding issues but as of yesterday, he is looking and acting a lot better. Cody and Coltan both were fine by this weekend as well.

Friday Cody had a soccer game. I had my step dad take him so I could stay home with Carson. Coltan ended up going to a movie with his friends. We had a lot of games the next day so I attempted to get everyone in bed early.

Saturday our first game was at 6:00AM. I had to get up at 4:30. The next games were at 2:00, 3:15, and 4:30. Then Cody had his last game at 10:30PM. What a long day. We ended up doing nothing but sleep in between games. The boys won 4 and lost 1. The game that we lost was the last game and Cody is 12 and they were playing 14-15 year olds. This is a league that we play up on so we can have a good challenge for when we go out of town and play really good teams in tournaments. We did end up playing my good friend Denise's son so I sat with the enemies so I could chit chat with her. LOL

Sunday we really didn't do much of anything. We hung out and watched movies together. I got some very disturbing news Sunday night and didn't feel energized to anything else. So for dinner we ended up eating turkey sandwiches and chicken noodle soup.

Today I had tons of calls to return and laundry to do and I just tried to stay busy and keep my mind off of things. I will be going back to work tomorrow so everyone needs to send good thoughts this way so everyone makes it to school and Porkchop goes to his babysitters for the first time in a month.

Tuesday, December 2, 2008

The flu bug is in the house

I just wanted to let everyone know that we are still here. We left Friday morning for our annual trip to Branson and ready for a fun filled weekend.

Friday night was the Dixie Stampede and Carson just loved the Red and Green horses. He even had some of the cute girl horse riders waving at him.

Saturday we went to the outlet malls and I got Coltan 3 pairs of jeans, a couple of shirts, Cody got a couple shirts, and Carson got some clothes as well. The deals were the best I have ever seen. This is our sixth year going to Branson on Thanksgiving weekend and I couldn't believe some of the deals. Most stores were offering 50% off and then we had coupons for 10-25% off depending on the store.

Saturday night we went to Silver Dollar City and the boys rode some of the rides and Carson loved the Christmas Train. SDC now has 4 million lights. When we went 6 years ago, it was only like 2 million. It is very pretty. Then they have this huge singing Christmas tree and we saw the parade. I think the boys all had a good time.

So Saturday night/Sunday morning guess who wakes up throwing up????? Yup, it was Carson! I was the hero and figured it out quickly and caught it all in my hand and the boys threw a trash can my way. So needless to say, I only had to change Carson's shirt and wash my hands. I know TMI but I'm still proud of my cat like reflex!

So Sunday instead of shopping and checking out some fun museum, the boys and I decided to get Carson home ASAP. Which is a 4 hour drive. He was burning up, diarrhea, and pitiful all the way home. We got home around 4:30-5:00 and he went to sleep. I put him in my bed so I could keep an eye on him. Come Sunday night, late, I'm sick. Then around 3:00AM Monday morning, here comes Coltan. It has been no fun at all. It is so bad that I had to leave at 2:30AM last night to buy more Sprite.

Of course this morning was Cody's turn. So here again I was going back to work today and I'm stuck at home with sick kids. Carson was getting better and today he just got worse again. I don't know if it is harder on him because he has been through so much but I would like Carson to get better for mommy. UGGGG.

Oh and I have a new employee that started two weeks ago and I have still not met her. I would love to but I'm not sure when that will happen.

If everyone would PLEASE, PLEASE, PRAY that we can all get better, I could actually go back to work. I need to work so I can get paid. Things are getting very tight in my household. It is hard for me to draw a paycheck when I'm paying someone else to do my jobs.

When I get back to full speed, I have some pictures that I will be posting.

Until then, take care and I will try to play catch up on everyone over the next few days. So if you haven't seen or heard from me, it's not for lack of trying. I can't wait to stop over and say hello to all of you.

Thursday, November 27, 2008


Today is a very special day for me. First off it is a reminder of all the things in my life I have been blessed with.

The first thing that I'm truly thankful for is my oldest son Coltan. Coltan is my hard headed, stubborn son and I wouldn't change anything about him. I love when I come home and he gives me a hug and tells me he loves me out of the blue. He also loves to wrestle and is always "picking" on me. Well he is officially taller than me so now it is actually a challenge. Coltan has the personality that he is very caring and doesn't like it when someone is upset with him. He is a lot like me. I love you Coltan......

The second thing I'm thankful for is my middle son Cody. He likes to be my little slacker but I have got some tricks to get him up and moving. Cody is usually my go with the flow child and sometimes that is nice in itself. Even though Cody is 12 he still has a lot of kid traits and he really doesn't care what other people think. He is more of a leader than follower and I love that about him. He is wonderful at home with Carson and is always calm with him and very loving. If Carson is crying, Cody will do everything he can to make him better. Cody also about once a week tells me he is going to sleep in my bed. It is nice to see that he still shows affection as well. I love you Cody.......

I know that it is a matter of time that my two older boys will go through that stage where I'm not their mother. Don't all teenagers do that?

My third blessing is Carson. He is kind of my surprise baby. Everyday he gets smarter and cuter and I love his ham personality. He loves everybody. He is so sweet and I'm very thankful that even though we have so many doctor appointments every month, he doesn't have something more life threatening. As I walk into Children's Mercy I look around and even though I'm stressed out with how time consuming all the appointments are, or how many sleepless nights I get, I'm still in a little easier position than some parents of very sick children.

I'm thankful that I have met some of these parents as well. They are a true inspiration with their strength. I pray for the parents I met over the the last few weeks for their children to come home soon and be healthy.

I'm also very thankful for my mother and step father. They have been very helpful with Coltan and Cody and she is always running to the store for me so Carson and I don't have to get out of the house. She is my best friend.

I'm thankful for the rest of my family which is a lot of people. We are always together on holidays and birthdays and days just because. It is nothing for us to walk in a restaurant in the middle of the week and ask for a table of 15 or 20. Most of my family lives with 10 minutes of each other.

I cannot exclude my friends and my blogging friends. You all have been my rock. I have a lot of things going on and to see everyone so eager pushing me forward because you know I can do it, it is wonderful. Thank you to each and everyone of you for your presence in my life. You all mean so much to me.

Most importantly, I'm thankful for God. He has blessed me with everything. There are so many times I question his decisions but I know he is doing what is best for me. One of the biggest things I'm trying to change about myself is to stop trying so hard and let him guide me without me worrying so much about it. Everything happens for a reason and HE is the reason.

I hope everyone has a blessed and wonderful day and eats so much that we all need naps. Only to wake up and eat some more!

Wednesday, November 26, 2008

Home Sweet Home

Carson and I are back home. He went in yesterday at 1:30 PM and Dr. S was running behind. So he was kind enough to give my mother and I some dinner vouchers. That made up for it a little. :-)

So anyways, we gave him the Versed and Carson was very happy and drunk acting. It was actually very funny. He kept leaning his head into my face and would say "mommy, how are you"? Then he would giggle. Of course his words were very slurred. So when it was our turn and we had to pass him off, he really didn't care that much. He was actually laughing. It was such a huge relief. I got on the elevator and just had the most peaceful feeling. I can't even explain it. Dr S was in there for about 35 minutes and came out and said he did remove a pebble. He said he cut it out along with some scar tissue and will send it off to the pathologist. But he didn't expect anything to come up with that. He also put internal stitches in and said they will dissolve on their own in a couple of months. He then put the steri-strips on the outside. He said he also cleaned up the scar and it will like a thousand times better when it is completely healed.

Because we gave him the Versed before hand he did come out a little slow. He also had some strider like last time but they were so on top of it. I really felt like they did an awesome job keeping a very close eye on my little Porkchop.

We did continue to give him all of his breathing treatments every 6 hours and this morning he did pretty good. They kept him on the IV until about 12PM because he wasn't eating or drinking well but that is just my typical Carson. So we were discharged around 2:15Pm and we went downstairs to eat and then we went to Occupational Therapy at 3:00. Carson had a wonderful time with Nancy and we are starting to work more on his muscles for his eating issues to see if this will help out with our swallowing problems.

We left the hospital around 4:30 and home by 5:00. Carson actually fell asleep in the car and it is almost 8:00 and he is still asleep. Oh boy, am I in for an early morning.

So that is it for now. Hope everyone is having a great day.

Tuesday, November 25, 2008

Update on Carson....

This is Shari from The Beauty of Life.

I talked with Kaci today at 6:00 her time and Carson has come out of surgery fine. They are waiting to get to a room and he will be there overnight.

She will update as soon as she can when she gets home.



Monday, November 24, 2008

Surgery is on for tomorrow

Well we went to the Pulmonary doctor today and she was going to have the final say about his surgery tomorrow. Dr E was very concerned with Carson having two surgeries 25 days apart. She went over his history and the lab work came back from scoping his lungs and I'm happy to report that it came back just fine. Then we discussed him being on Advair for the last couple of months. It is a small improvement that he has gone from having flare ups 5+ times a week to about 2-3 times. We are going to leave all alone with his medicine and report back to her in Feb. If he hasn't slowed down on flare ups by then, she will probably go back and do a different type of scope. So keep your goods thoughts and prayers coming that the Advair is going to work. So after that, we discussed Carson's night terrors. How lucky is that ? Our pulmonary doctor is actually in charge of sleep studies? So she gave me a few ideas to help Carson and she said if we don't have any improvement in about 3 weeks, call the office and they will prescribe him something temporary until we come back in this Feb. So after all of that, she said she would allow him to have surgery but she would come check on him on rounds Wed morning and she would let Dr Singhal know that she will not release him until she has seen him as well. She is kind of the Chief in all of this. But I'm glad because I think she truly loves Carson.

So the plans tomorrow??? Well we got bumped back again so now it will be at 2:50. We go to Same Day Surgery and check in at 1:30. I hope they are running on time this time. He does have a 10-20% of ending up in ICU but again, with all of your happy thoughts and prayers, he will be just fine. We will be giving him a medicine orally called Versed. This is a medicine that will calm him down so much that he won't even realize we are passing him off for surgery. I just feel with all the trauma from last time and the closeness of the two surgeries, this will be for the best.

So, please say a prayer for Carson and let us get home soon so Mommy can get us ready for turkey day.

Sunday, November 23, 2008

And the winner is...........

First off, I just wanted to tell everyone thanks for sharing your recipes with me. I'm going to be trying a lot of them out very soon. Starting this week. So I put everyone down on a sheet with a number and you received extra entries for extra recipes and also another entry for adding me to your blog roll. I then went to Truly Random Numbers website and had it pick. The lucky winner is Colleen over at Spaghetti.

I will be mailing her a gift card from Wal-Mart this week.

I was very excited by the turnout and the number of recipes that came along with it. Thanks again to everyone and as I do use your recipe, I will make sure to let you know!

Friday, November 21, 2008

So for the rest of the week

Well it turned out to be a very long and busy week. Coltan and Cody both had their usual soccer practices. We did some homework and had some reading time. Nothing to exciting or new with them. We did rent a movie last night called the Iron Man. It was okay. I have heard a lot of good feedback so I was a little disappointed. Guess I'm more into more girlie movies.

As for Carson, well we only had 4 doctor appointments this week. I already posted on his ENT appointment and his plastic surgeon. Thursday we went and had our pre admission testing. The anesthesiologist is a little concerned with Carson going under. I knew on his last surgery that they had a little problems with him after taking the breathing tube out but she made it sound like it was a bigger deal than they told me. So that didn't make me very happy at all to think the doctor withheld pertinent information from me. I understand that maybe she didn't want to worry me more or think that maybe I wouldn't understand completely, but bottom line, she withheld info from me. So anyways, she said he will have a 10% chance of staying on the vent and going to ICU but because he did so well last time, I'm going to stay positive. Dr. M did want to make sure that I knew that we would be staying overnight for observations.

After that appointment we ran to our OT appointment and as usual Carson had a ball. We worked on the swings again and he showed her how he can make a police car now. My mom bought him an etch and sketch and this boy loves it. Nancy had been working with Carson on drawing straight lines, circles, and the letters X and T. So we have been using this at home and practicing a lot. He is always telling me to draw him a car and a couple of days ago he drew a straight line and the two circles for the tires. So Nancy was really impressed. Carson has also learned all of his shapes including diamond, heart, star, oval, rectangle, square, and circle. He officially knows all colors as well including white, black, grey, pink, and brown. We are also practicing all the colors in Spanish. He is so smart.

Now for my cute story, so today I told him that he needed a nap. He hasn't been sleeping well at all and he said NO. So I took him to my bed and laid down with him and told him to go night-night. Carson said No night-night. I asked him why and he said because. I said because why? He said No night, day day. OMG he is getting to smart for his own good. I cannot believe the things that come out of his mouth.

Coltan and Cody went with their dad until Sunday afternoon and Carson and I are going to hit a Christmas shop in Grandview this weekend. My mom went there last week and said they have everything and all at great prices. I'm not sure if I ever told anyone but a couple of years ago my sump pump went out and it ended up flooding my whole basement. My basement is finished and includes a closet, rec room, Coltan's room, a full bath, and a crawl space. Well now I'm slowly replacing everything and I only have until May to turn everything into my insurance for reimbursement. So I'm going to go there and pick up some cute things to decorate my house.

Until next time.....

Wednesday, November 19, 2008


Well Saturday was day 15. That means Carson's home bound for 14 days were over! So we went to Crown Center and celebrated. I left my house and went to pick up my mom, dad, and two nieces and off we went. First stop, Fritz and Co. (the train restaurant). Carson was excited the whole time and even got to eat real food. He has been on a non dairy, soft, and clear for the two weeks so today he got to eat chicken nuggets, french fries, and a chocolate milk shake. (with the thickener of course).

After dinner we started walking around the shops and bought Carson a few things that he couldn't live without. He got a cute little dog that sings a Christmas song all while flapping his ears. Then we went to the 'Crayola store and he got a big coloring book with some colors. We ended up leaving there around 6:30 and Carson was out 15 minutes later.

Saturday night Carson woke up at 1:00AM and never went back to bed. I had my niece Aspen come over around 11AM and stay with him so I could sleep for a couple of hours. Carson never went to bed until about 9PM that night and then of course we were up all night long. Carson wakes up and screams for long periods at a time and nothing I do will help him.

So Monday morning started all of this weeks doctor appointments, We went to the ENT for his post op check up and Dr N said his ears and tonsils look great. I expressed my concerns about Carson not sleeping and she stated that he is having night terrors. It is basically like sleepwalking without the walking. The child sits up and screams and hollers and isn't really awake. So since he isn't awake, you are suppose to sit and watch. Sometimes it goes on for a couple of minutes up to 40 minutes. It is so sad to know that he is going through this and there is really nothing for me to do. She said it can happen for a number of reasons starting with being sleep deprived (yup), separation anxiety (yup), or something that was traumatizing (surgery). So she said it can go on up to 1 month and if it goes longer than that, she will refer him to a child psychologist . So that is what I have been up against. Dr N said that I really should try to get some help with someone but Charlie is at the farm until Nov 24th and I have asked him to please help out but he is really involved with deer hunting. So with that said, I'll be the only one tending to Carson helping him through this.

Yesterday we just tried to work on getting him back on a routine and we will see if we can move forward.

Today we had an appointment with the plastic surgeon on his chin and I asked him if he thought this was too soon for Carson with the night terrors and he said it was up to me but why wait for them to stop and then start all over again if we push this back. He thought it would be in the best interest of Carson to get this over with and then not worry about him repeating this cycle in Jan or Feb. So surgery is still on. But he did ask if we could move it to Nov 25 (one day later) and he was very appreciative to me being flexible. I grew a whole new form of respect from him after him thanking me several times and even took the time to walk us to the elevator. What doctor does that? Pretty cool if you ask me.

Tomorrow we have to see the anesthesiologist and then we go to Occupational Therapy. Monday is back for the Pulmonary Clinic and then Tuesday is surgery. We will spend the night and we have OT scheduled on Wednesday so I'm going to see if Nancy would come up to see us.

So that is about all I know for now. I have been pretty busy with everything and cannot believe it has been since Saturday since I posted last.

Coltan came home Saturday and Cody came home Monday. Thank goodness soccer has slowed down a tad. We only have practice now on Monday and Tuesday's since we are now in an indoor fields. Of course we still have lots of games on the weekends. The boys are only on two teams for the winter so that will help out a little as well.

My goal this week is to get all of our X-mas decorations out and start putting them up. (okay Amy, you can put your tree up now. LOL) So wish me luck. I'm going to try and sneak into work tomorrow afternoon and Friday since I haven't seen that place in 3 weeks. I don't even know if everyone still works for me. :-) I think someone would have spilled that. LOL

I will try to update some more and I still have some cute pictures to post when I get the time.

Friday, November 14, 2008

5 Minutes For Mom Contest

So there is this fun contest that I would like to enter Carson in. It is from . The winner will receive a $500.00 gift card to a local grocery store. Who couldn't use that? This is Carson at his first birthday party. His birthday actually fell the day before Easter so I had 30+ people there for an Easter dinner and Carson's birthday. Poor little guy. He is allergic to everything and actually broke out into hives after eating his first cake. Hopefully this will be something he will outgrow.

Thursday, November 13, 2008

Surgery Day Part Two

For those of you that haven't followed long with us, this surgery was actually on Oct 31st and we were discharged on Nov. 1st. I have been behind on posting pictures because I'm tied down with a two year old. So we finally got called back to our room. This is where they took his vitals and where we got to talk to the anesthesiologist and then to the doctors. We started here to get his weight, height, and vitals.

This was the next room that we stayed in for a while. The nurse came in and did a thorough medical history on him.

Thought we'd try to ride the dinosaur for fun.

Well we were told we were still waiting on Dr N so we took him back to the waiting room where there were tons of toys. He really liked going into the house and someone would knock to see if he was home.

Playing with Lego's

Now he is bored, hungry, thirsty, and tired. His patients were going fast as they should be. We were now there in our third hour waiting.

This is nurse Phil. Carson really liked him so I asked him to be the one to help us get Carson back.

One of my saddest moments as a mother. We had to say bye and watch him go by himself. I cried just a little. Phil promised to take good care of him. As they turned the corner Carson was crying out to me saying "mommy, please come back". I almost stopped the whole surgery just so I could take him home and never scare him again.