Today overall was not eventful or dramatic, but I am beat. We had a lot of activity with therapist and doctors today just to stop by for a check. It is like having an open door policy here.
Dr. Spence came by to take a skin punch test from Caroline's thigh. This is a type of genetic test that may or may not give us any clues to chromosome analysis or a mosaic pattern of chromosomes that may give Caroline her unique features. We rejoice in all the normal test results as possible, but look for answers to her lack of growth and appetite. The speech therapist came by today to check on us. The Physical therapist came by to do exercises, stretches, tummy time, and message therapy with Caroline for 30 minutes. The Occupational therapist came by to look at Caroline's hands and wrists and made little hand splints to help remind her to keep her wrists straight. She will only have to wear them at night when she sleeps. We have a feeding pump hooked up to her g tube that is giving her only 10 ml an hour of pedialite until 6am. She will begin having g tube feeds at 6am in her tube after she tries to eat with her bottle first. I battled with the nurses and docs today to start her fluids sooner. This did not happen until 3pm today and I was quite frustrated because I know Caroline's ques that say I really am hungry even if it is only for a little bit of milk. So I gave her 10 cc of milk and then told the nurse and doctor that I would be giving her milk every three hours from her bottle. The GI doctor said we could have milk in her tube, but the pediatric doc did not agree even though the GI doc did the surgery - so I got permission to feed her some milk by mouth every three hours. She was in some pain today and a bit fussy for herself. Now she is resting. Carley and mom came to eat dinner with me. I had 2 visitors from church too! We will probably come home Tuesday morning. Please pray that Caroline makes it without having oxygen tonight. She has been weaning from the oxygen cannula today.
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