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Blues Benefit for Twins @ Earthlink Live January - March 2006
January 1st. A new year and a new start. I was given the three P's by a friend. Have a Prosperous, Productive and Promising New Year. I linger on these words for the new year. I just added the most important P to the list "Prayerful". I know that without prayer and a belief in the almighty that my entire family would not have been able to survive all that we had endured. We have continued in our normal routine of central lines, dirty diapers and growing little men. Our babies are really growing up. The twins will be "1" on January 10th, 2006. WOW this has gone by so very fast. January 6th, We had an appointment with Dr. Cole. We left the office with great news. Dr. Cole discontinued 3 out of 5 meds given to CJ four times a day (I don't have to wake up at 3am anymore) CJ's bloodwork was excellent (per Dr. Cole himself) CJ's TPN is now for 12 hours instead of 16 hours (Woo Hoo-more play time) Dr. Cole is recommending to Dr. Parker to give CJ his re-connect surgery in March of this year!January 10th, my mom and dad came up from Columbus to check on her broken ankle. Of course grandma planned this appt. on the babies birthday. We purchases balloons and a cake for the babies. We sang happy birthday and let them eat their own cupcakes. It was really fun. January 20, We had an appt. with Dr. Cole, It was so very busy. CJs' TPN was increased just a little because he had not gained enough weight. Dr. Cole has increased his feeds and we anticipate that CJ will be off of this stuff by the twins benefit on Feb. 10th. Jan. 25th CJ is beginning to get a rash around his stoma. He also has a rash around his central line. He sweats a lot and this causes a lot of problems. Both babies have colds now and they are so very aggravated. We are having to pick them up constantly to calm them. I have not been feeling my very best the last few weeks and have had to really rely on daddy almost fully. He is such a great daddy and we love him. January 26th,27th, both babies have been so much work. We are now waking up at 2 and 3 am cleaning out their noses and CJs' colostomy bag keeps bursting. I think that daddy and I were almost in tears from sleep deprivation. We didn't even have time to let the other one rest for a few hours. It has been constant work. We have been planning the benefit during all of this also.
February 2006
Feb. 3rd, It brings me great pleasure and joy to say that CJ is officially off of TPN. TPN is the medication and nutrients that have given him liver damage. CJ weighs 22pds 3 ounces and is 18.1 inches long he is trying to crawl although he still has a colostomy bag and is even standing from time to time with help. Victor is trailing CJ at 22pds 7 ounces and is over 22 inches long he is walking and can't be still. Trying to get into everything and doing great. Both boys had terrible colds this past week and a half so this is just wonderful news. I am hanging in there with some discomfort but I will be ok. February 5th, I prayed last night for the Lord to bless my family to make it to church. We are so hindered from being able to attend for different reasons. If its not CJ or Victors health, its our health, or just plain old weary bodies. CJ is now off of the TPN so we made it and we were so very blessed. We attended Providence Baptist Church in Atlanta, GA. It was such a treat everyone. We were able to thank the congregation for all of their prayers. Maurice attended their church when myself and both babies were in separate hospitals. They gave him words of encouragement and it sustained him. It kept him going. The babies were absolute angels in the service. We were such proud parents. They were listening to the great choir and were even great during the powerful sermon. "Stirring up the blessings inside" I wish you all could have been there. This was the boys first time in church and they were being wonderful. We called grandma Mary and wished her a happy birthday today. Feb. 6th, We had a speech appointment and it went really well. CJ ate a little pureed bananas and played with Ms. Barb it was a great morning besides all the cold rain. When we got back home, CJ went right to sleep. He slept for a long while and after a few hours I noticed that he was a little warm. He was not himself and I began to comfort him. I gave him a little Motrin and he began to get a little cooler. Both boys have had head colds all week. Feb. 7th, 2:00am, I noticed that CJ was kind of grunting. I felt him and he was so hot to the touch. I took his temp and it was 103.5. I woke up daddy and it was off to the emergency room. Daddy said that it was hard to get blood from CJ and that they could not get a blood return from his central line.Everytime daddy put the cell phone to CJs' ears, he stated that CJ smiled. Well they finally got blood and Daddy had to step out of the room. He did not want to see little CJ being stuck for the third time .Daddy sat in the emergency room 2:30am this morning and CJ finally got a room on the floor around 5:00pm. CJ and Victor are really blessed to have a Father such as Maurice. I don't think my heart could take that kind of stress. Feb. 8,CJ had a pretty good night last night. This morning around 2:00am he broke out in hives from the antibiotics. He was given Benedryl and is doing much better. He is growing an infection and we are waiting to see how it will be treated or if they are going to remove the central line. I am so very sad to say that CJ will not be at his own benefit this Friday. Thank God it will be on DVD. He will be able to see it when he gets older. Feb. 10th, The benefit was a success as far as the performances. Daddy did such an awesome job.
To The Volunteers: Oh where do I start. You all were so kind and helpful in assisting with the benefit.We especially want to thank the following: Earthlink Live
Dr. Douglas Collins and Dr. Reginald Fowler(We love you Mrs. Francine). Without the two of you, the benefit would not have happened.
Maddys BBQ-These people gave until we stopped asking. Thanks so much Jeff and Clay
Publix-Emory Commons-Gave the most beautiful trays to the cause. Thanks so very much John and Brad
Tracys Pharmacy-The perfect pharmacy with family in mind. We are forever grateful
Joanns Cleaning Service
Phi Beta Sigma-You all took care of our family with love and support
Providence Baptist Church-The singles ministry for all of their support and love-The entire church family
We want to thank WRFG, B98.5, Deacon Bluz, The Georgia Legacy Foundation, UK Bob and The Atlanta Blues Society.
Thanks to all that donated to the cause and made this benefit happen.
Last but definitely not least we want to thank all the artists that performed. It was a special treat.
Feb. 11th,I called the hospital to find out that CJ has yet another infection called the ROTA Virus. I know that God is in total control. This virus makes the baby dehydrated. His heart rate has to be watched and you have to make sure that he does not start vomiting. The two other infections have been clear for two days. This virus has to take its course. He is on nothing but IV fluids right now because he had projectile vomiting and has diarrhea. CJ is in believe it or not, a great mood. He is watching his Baby Einstein and laughing. When I spent the night he woke up twice pouting and I had to stroke his head to calm him down. He went right back to sleep. I whispered "Mommies Here" and off to sleep he went. Feb. 15th CJ is doing pretty well.. He has started back on his feeds. Daddy just wanted to see CJ at the hospital. I told daddy to make sure to follow the hospital procedures. GUESS WHAT! Daddy has the virus and so does Victor. I am the only one who does not have it. That is I still have an appetite. Feb. 16th I had a dental appointment today at 8:00am. and my wisdom teeth have to be pulled. I have to wait 6 weeks because I have to go into the hospital to have the teeth pulled. This is because Drs. want to make sure that my heart keeps going during the procedures. I am not worried one bit. I know that God has total control. I went to see CJ directly after my appt. It was 1/4 a mile on the same road. I saw my little CJ today and he was just beautiful. Full of smiles and love for his mommy. It makes me so proud when every nurse says that he is a joy to take care of. CJ just wants his duck pacifier and his Baby Einstein. I asked God to lighten up and he gives me humor to keep us all sane. God Bless and I will be back as soon as I can. Feb.17-18th, Maurice and I have been taking care of Victor. He has really been sick from this virus. CJ will not be able to return home to us until the virus is out of the house.Victor is having projectile vomiting and the Pediatrician is telling us to stick it out unless he vomits again. We have had to put fluids in him via syringe. We are pleased that he is in a good mood also. He is able to eat a little oatmeal so we are happy to see that. Its just a lot of diarrhea and stomach talkin. CJ is doing absolutely great. We have not seen him in a day. We will probably not see him for a few days more to keep him from getting re-infected. There are student nurses that are spending most of their time with him at the hospital. This is one worry that the Lord has taken away from our family. Daddy is getting better, but is fighting off the virus. I am doing the very best that I can and God is keeping my health in his hands. Please continue to pray. Feb. 19th, Ok, we are tired now. Sunday night, we had to take Victor to the emergency room for dehydration. Yes he really showed out. I had to hold his iv hand the entire time that he was getting fluids. We were only there for 7 hours so we are not complaining. CJ is doing great and daddy was able to visit him on yesterday. Feb. 20th, Victor is doing much better. Daddy is doing ok as well. Feb. 21st, I had a cardiac appointment. All is the same here. My heart is at less than 20% infraction. After the appointment, I got the great news that CJ would be released from the hospital. We all had a smiling and happy night just watching the babies laugh at each other. Feb. 22nd, the day was really long. It was back to the two babies. They took it easy on me.Feb. 23rd, Victor had a follow-up appointment from emergency. He now has an ear infection. He is on antibiotics and ear drops. CJ is doing well. CJ did decide to pull out his NG tube at 3:00am this morning. Both babies are fighting for our attention. Daddy can't even sit down after work because the babies want to be held by him. Feb. 24th, CJ decided to once again pull out his NG tube. Its been really hard on me, my body is so very tired. My heart is heavy and I had to get some rest. I have been fighting off this virus. Feb. 25th, Daddy woke up at 6:30am with Victor. CJ and I woke up later and daddy and I had to put his tube back in. We have decided to put the guards back on his hands. All is well. We are praying to make it to church on tomorrow. Feb. 26th, We were not able to make it to church. Mommie was not feeling well. I guess I am just exahausted from dealing with everyone being sick at the same time. Feb. 27th-28th, everyone seems to be doing pretty well.
March 2006
March 1- 5th, We all just spent everyday getting back into the routine of the twins. March, 6th, CJ had a new PT. He did really great. He is now standing and working his body. He has learned to roll over and try to crawl. March 8th, we decided to put the babies in their cribs and for the first time in over a year, no-one slept in the babies room. We decided that they would go to bed every night at 8:00pm. This is working very well for Maurice and me. We are actually able to sleep in the same bed together and we now have time to spend with each other one on one. March 13th, CJ had PT and ST (Physical therapy and speech therapy) He did great on both. He is beginning to put things in his mouth so we are hoping that he will be eating from the spoon in a few weeks. Victor of course is spending his time entertaining his brother. He dances for him and just makes him laugh non-stop. March 17th, We had an appt. with Dr. Cole. CJ is doing very well. He is getting bigger but not longer. My mom said "well thats cause he is going to be short". It took my mom to remind me that I am short also. (We love you mom and dad) CJ is now on 18 hour feeds versus 20 hr feeds. I was told that I can feed him pretty much anything so I am starting with number 1 baby foods now. I received a call from his TPN nutritionist and she stated that his bloodwork was excellent. Tracy was surprised that his liver funtions are doing so great after he has been off the TPN for such a short time. (Praise be to God) March 18th, CJ has been really working out. He is rolling over and actually lifting himself up with his arms. He made 3 steps today. He is talking a lot more also. I think that he will be walking and eating just in time for his surgery. Last but not least-The central line will come out in about 2 weeks and surgery for re-connect is expected to be in the early Summer. March 19th, Granddaddy and Grandma came up from Columbus, GA. , the babies were so very excited to see them. March 20th, CJ had PT and did very well. March 21st, Daddy was quite sick and had to go to the Drs. office. He had a serious virus, bronchitis among other stuff. He was down for the count. Thank goodness my mom and dad were here. They always seems to be here at just the right times. March 22nd, CJ and mommie were off to Emory University for the gut study. The staff there was just wonderful. Ms. Ida Smith was our nurse and CJ loved her. Ms. Diana from food services was his favorite also. The study showed that he was infection free in his gut. We were so very happy. March 23rd, I began to feel sick. Daddy was so sick that granddaddy had to take us to the study and pick us up. Thank goodness granddaddy is a fast learner in directions. We got home from the study and I immediately went to sleep. March 24th 5:00am, granddaddy,me and CJ got ready to go to Egleston to have surgery to remove the central line. It did not take long and we were back home by 11:30am. Granddaddy and grandma left for Columbus on Sunday March 26th. I was still so very sick with this virus. March 27th, Daddy had to take total care of the babies. I did not want them to get sick. Victor had his first bath in the big tub, he had so much fun. Everyone seems to be getting much better.