seven sparrows

Friday, 1 May 2009

Prime Time

Bailey has been increasingly uncomfortable each night from about eight o'clock until sometime in the night :) On a good night this sometime is around 11:00. On a bad night it is not :o By increasingly uncomfortable I mean screaming and crying for hours at a time and having traces of blood in her stomach. We are working with several different care providers on discovering what contributes to her discomfort. Possible culprits include medications she is on, milk allergies, something related to the placement of the feeding tube, and/or general colic. Because of a sugical procedure reflux is not a likely canidate for the problem. Bailey, like most two-month-olds, has not been cooperative in verbalizing what exactly the problem is ;)

Yes we have tried car rides (which sometimes helps), putting her in the car seat near or on the dryer, in the swing with various "white noise" and countless other things. Please remember us during the "prime time hours."

Early On

Bailey had her first visit with "Early On" Wednesday of this week. Early on is the early intervention program run through the intermediate school district for children from birth to age three who have disabilities or developmental delays. As a part of the assessment process specific goals related to development are established and then services are put in place to assist with helping Bailey to move towards these goals. The individualized plan is reviewed and modified periodically as her needs change. In the next month Bailey will have an in home evaluation from both a physical therapist and an occupational therapist to set more specific goals.

Vision

Bailey and Alexis both had their two month check ups and continue to grow. Bailey is now over 9 pounds. One of the significant concerns that the pediatrician has for Bailey is her vision. Because it appears abnormal she will be seeing a specialist in the next couple of months to perform a more comprehensive evaluation.

Feeding

Bailey had her swallow study and she does continue to aspirate. In a normal swallow as food reaches the back of the throat the airway is closed off to prevent liquids or food from entering the airway. When Bailey attempts to feed she does not adequately close off her airway to protect against ingested food. She is also a silent aspirator. We have all experienced things going "down the wrong pipe" and know that a coughing fit follows. As a silent aspirator Bailey does not have this protective cough response. Instead if she were fed orally at this time she would be at high risk for respiratory complications secondary to this aspiration such as pneumonia. One of the things that can be done to prevent this is thickening liquids so that they are less likely to "go down the wrong tube." Other strategies including how she is positioned during feeding can also help. She has been referred to feeding therapy and will start in the next couple of weeks. For now she will continue to need to be fed through the G-tube.

Monday, 6 April 2009

Monday, April 6

Last week Tuesday Bailey had another EEG to check for seizure activity. On Friday we met with the Neurologists to discuss the results of the test and further treatment. The EEG did not show any seizure activity during the test so the Neurologist decided to slowly take Bailey off one of her anti-seizure medications. Bailey will always be at an increased risk for seizures and will most likely remain on anti-seizure medications permanently.
This week Bailey has a swallow test. This will tell us if food is going into the stomach or the lungs. Please pray that Bailey is able to swallow correctly and that we could begin feeding therapy to possibly feed her orally.
We can't begin to express our thanks to everyone for the many ways they have surrounded us during this difficult time. We are so grateful to know that we are not alone, God continues to show us love through people like you. Thank you.