First I want to "Thank You" for visiting Sophia's website and following our story. I originally began posting small blogs on a pregnancy website when I first found out I was pregnant. I copied those blogs over to this site so that everyone has the opportunity to follow our story from the beginning.
Sophia has brought so much joy and happiness into my heart and I hope she finds her special place within yours.
LIFE 5-18-11
Posted by Sara Frizzell on Wednesday, May 18, 2011
Under: 2011
Since my last blog so much has happened. Sophia had an endoscopy that showed active reflux meaning she has a constant flow of acid in her esophagus. This acid has already began to affect her on a cellular level. We started Sophia on Carafate syrup several times a day. Carafate acts like a protective coating so that we can give her esophagus time to heal. My only concern is that at such a young age her esophagus has already been damaged.
Suddenly just two weeks after her endoscopy Sophia refused to eat. For 5 days all I was able to get down her was 1-2 ounces of pediasure each day. She began showing signs of dehydration so we took her to the ER and she was admitted. I had been in touch her her pediatrician all week and Sophia's GI. During Sophia's protest against food I finally agreed to move forward with the g-tube surgery. After all, Sophia refused to eat because of the pain in her esophagus and if we had gotten the g-tube earlier we could have kept her out of the hospital this time. We were in the hospital for a week in which during this time Sophia did get the bard button. Of course after surgery she began to eat orally again but we have a plan B in case this happens again. Since we have the button we might as well use it, right? We began to give her small amounts of food overnight to help add to her caloric intake. She has been getting 120ml over a 6 hour period. I'm debating on giving her a lesser amount because her appetite during the day is still not where I want it to be. Our goal is to make sure Sophia takes in 600-1000 calories a day and she's doing that now but only by doing the night feeds. I feel as though she's full when she wakes up so she doesnt want breakfast until mid morning or around lunch. I'd rather keep her eating more by mouth and lessen the overnight caloric intake. I'll just add more duocal to her food and give her lots of fatty foods like avacado.
Sophia also had an MRI of her brain, ears, and arms. My main concern at this point is not of her arms but her brain and ears. We dont go discuss the results with her neurologist for a few more weeks but reading the report has caused my anxiety to go off the charts. Researching what each of these mean only added fuel to the fire. The results show a 6mm cyst within her pituitary glad, mildly and diffusely thinned corpus collasum, gyral simplification, mild brainstem and inferior vermis hypoplasia most evident in the Prons, Bilateral Optic Disk Colabomata, and absent left olfactory bulb. Bilateral Optic Disk Colabomata and absent Olfactory Bulb are both seen in CHARGE syndrome. GREAT!!!!! When will it ever end?
Suddenly just two weeks after her endoscopy Sophia refused to eat. For 5 days all I was able to get down her was 1-2 ounces of pediasure each day. She began showing signs of dehydration so we took her to the ER and she was admitted. I had been in touch her her pediatrician all week and Sophia's GI. During Sophia's protest against food I finally agreed to move forward with the g-tube surgery. After all, Sophia refused to eat because of the pain in her esophagus and if we had gotten the g-tube earlier we could have kept her out of the hospital this time. We were in the hospital for a week in which during this time Sophia did get the bard button. Of course after surgery she began to eat orally again but we have a plan B in case this happens again. Since we have the button we might as well use it, right? We began to give her small amounts of food overnight to help add to her caloric intake. She has been getting 120ml over a 6 hour period. I'm debating on giving her a lesser amount because her appetite during the day is still not where I want it to be. Our goal is to make sure Sophia takes in 600-1000 calories a day and she's doing that now but only by doing the night feeds. I feel as though she's full when she wakes up so she doesnt want breakfast until mid morning or around lunch. I'd rather keep her eating more by mouth and lessen the overnight caloric intake. I'll just add more duocal to her food and give her lots of fatty foods like avacado.
Sophia also had an MRI of her brain, ears, and arms. My main concern at this point is not of her arms but her brain and ears. We dont go discuss the results with her neurologist for a few more weeks but reading the report has caused my anxiety to go off the charts. Researching what each of these mean only added fuel to the fire. The results show a 6mm cyst within her pituitary glad, mildly and diffusely thinned corpus collasum, gyral simplification, mild brainstem and inferior vermis hypoplasia most evident in the Prons, Bilateral Optic Disk Colabomata, and absent left olfactory bulb. Bilateral Optic Disk Colabomata and absent Olfactory Bulb are both seen in CHARGE syndrome. GREAT!!!!! When will it ever end?
In : 2011