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Celeste has had a lot of challenges in her life. I choose to write about it here on her own little page because there is so much to tell you. Celeste was born to us on February 14, 1996. What a joyous day that was. But also very Scary. We knew this young baby had a long life before her with many problems. She did real well at first weighing only 2 lb. 3 oz. She was even doing better than her twin, Myesha, at first. She was on no oxygen. To make things Easier for me I am going to tell you about her from my journal.
Dear Journal,
Celeste the second oldest, what a tribulation she has to face. Life hasn't dealt her the best, but she has taken it at her best. What a special little girl, eleven Surgeries by the age of fifteen months. for her age she has certainly faced things' head on.
She can beat her twin sister at many things. One serious thing, she has discovered her teeth can leave quite a mark. Myesha has been bit many times. Celeste cousin, Zachary and other children have gotten several times to. I guess she feels it is the best way to get what she wants. It has been very embarrassing to her parents. The nursery was her favorite place to bite. Being an ill child, has dealt her many bad habits. she feels that she has to get sympathy from all those around. Many a time, pretending her head hurts when in fact I don't believe it was hurting at the time. I must break her of that one so when it is seriously hurting than I will know when to believe her. She can go on for hours crying and crying if given to much sympathy.
Celeste has always had a very beautiful smile. I believe she is going to do many great things in this life. She always has plenty of kisses and hugs for you. She loves her little sister, Mary. Celeste is very protective of Mary. When Celeste hears her crying she always goes and gets her Mommy. She wants to make sure Mary is taken care of.
When Celeste was born, she was very small. She was breathing on her own which was a great blessing. At two and a half weeks she developed pneumonia caused by aspirating some food into her lungs, caused from Gastroesophageal Reflux disease. From there on she was on oxygen for about four weeks. Celeste had her first surgery on March 20, 1996 for her hydrocephalus. They let me take her home on March 30, 1996. But I had to take her back on April 3, 1996 for her second surgery and second shunt for her hydrocephalus. Celeste also has a condition called Dandy Walker Malformation.
She always did grow slow since she was born. They marked her as a failure to thrive. She will always be smaller then her twin sister, Myesha. Celeste did really well with her shunts until fifteen months old. We had to take her up to Salt Lake City in a hurry on April 29, 1997. She had an infection that she probably had for about five months. Her belly began to swell. She had spinal fluid trapped in her peritoneum (belly). No wonder she had been throwing up so much, it was also caused by her reflux. What a trial for such a little girl. I love her with all my heart. I was also pregnant at the time and it surely was difficult. I had to cancel a doctor's appointment, so I was pregnant for four months before I saw the doctor. I was already beginning to have problems. Celeste went through eight more surgeries. The first surgery they externalized her shunts catheters out of the belly. I was mad because the doctor made new incisions when she should have cut on the old incisions. I guess she figured that it doesn't matter to Celeste how many scars she would have. I know if it was me I would be upset when I got older. The second surgery was to remove the shunts and put in drains externalized from her head. The infections was caused by either the shunts or she had developed it in her spinal fluid somewhere. The right drain didn't get put in far enough. They had to fix it twice. They treated the infection for about fourteen days. Then they tried to put new shunts back in. This time they tried to combine the shunt catheters and put them into the heart. I got a call in the middle of the night. Her heart beat had gone way down and we about lost her. They tried to put it back into the heart again, failed again. They then externalized the shunts again to give her a rest from the surgeries. A few days later they decided to put the shunts back into the peritoneum cavity. The heart was not working and they did not feel it was safe to put it into her pleura cavity between the ribs and the lungs, they felt she was too small and they wouldn't handle it well. We were the ones to suggest it, prompted by the spirit. That is when we finally got to take her home. That was May 13, 1997.
On August 8, 1997, she had a surgery to insert a Gastroesophageal Feeding Tube. That is so we could force feed to get her to grow, she now weighs approximately 18 lb. 6 oz. She has trouble eating solids. She also hoards her food in her checks, just like a hamster. When she tries to swallow, she gags. The nurse figures it is because she hates to textures of the foods on the back of her throat.
She is a real sweetheart. I feel that her life is going to be full of trials. She will pass them all. I am sure of this. I bet she is stronger than her mother in this area. We love her so much.
March 6, 1998
Celeste your Mother loves you so much. I hope she grows up and marries in the temple to a wonderful mate. She is a light in my life and is so sweet. She helps me to be happy when I am sad. She is such a cutie. Celeste loves Barney, Pooh, and all.
February 12, 2001
Celeste is now 5 years old and it is hard to believe. She is excited about starting school here at home. She especially seems to like reading. Celeste is learning the Distar Reading System, which she seems to be picking up quickly.
Her shunts are still working wonderfully. We have been very thankful for that. She still weighs 25 lb. We hope to see a gain weight soon.
January 17, 2003
I have not updated for quite some time. In July of 2001 We had to take Celeste to LDS Primary Children's Hospital in Salt Lake City, Utah. Her belly began to swell again and could not absorb the fluid being dumped in her paratineum cavity in her abdomen. This time instead of a staff infection they found she had a yeast infection. This kept her in the hospital for one month on antifungal treatment and very little antibiotics. I explained to the infectious disease doctor that I knew my daughter had Lyme disease. He wrote me off as crazy. He told me straight to my face that I was stupid and I was diagnosing my own children to get attention. Of course this was not true.
Well the month ended and we went back to home in Shelley, Idaho. Only to return in 3 days to the hospital in Utah. This time she had a staff infection and spent two weeks there. They had her on Vancomyocin. I told them she would most likely herx on this since she had Lyme (I had no proof they had it at the time, never mind that Lyme Disease is a clinical diagnosis). Same doctor same reaction as before. She did herx and had a rash all over (even a rash that looked just like an EM Rash that I had taken a picture of...the doctors did not come and see the rash before it disappeared). Without even taking a look at the rash the doctors diagnosed it as an allergic reaction. It was a relief when we left for home.
We decided to move to New Holland, Pennsylvania in September of 2001. It was very hard leaving our family, my husband quit college, and we left our beautiful home in Idaho.No doctor would work with us. They did not believe that Lyme disease was in Idaho. I can beg to differ on this one. We moved in with a wonderful friend of mine on the internet. She was so great to help us get going. In June of 2002, Mary, my youngest daughter had a positive pcr test for Lyme come back positive. My positive test came back three weeks later. My twins soon after had their test come back positive for Lyme disease. We were all give IV antibiotics. But have not had long enough treatment and we have relapsed. Celeste is effected greatly in the learning category but it is hard to know if it is because of the Lyme or all her neurological problems.
We are now retesting with the PCR test again and hope to get another positive soon so we can begin treatment again.
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