10-13-10 5:30pm

So today is either neutral or a positive at least when it comes to little Riley.

Michele went to her follow-up doctor's appointment today. The doctor order her to get blood work and an EKG due to the fact that she has been having chest pains for 3 days now - she failed to tell anyone because she thinks it is just stress related. Her doctor agreed  with her, but still wanted tests - she may need to go on anti-anxiety medication.

On to Riley Rose:

1) Her CRP levels went from 2.9 yesterday to 1.5 today. So this means either the antibiotics they put her on yesterday are starting to work or she just has CRP levels that bounce around - which can happen with newborns. We also found out that she may not have the immunity issues that could come with this - we believe this right now due to her lymphosite (sp?) levels being what they are supposed to be for her age. These help fight of infections and sickness, so we are huge fans of these.

2) Riley's nose CT came back showing that she simply had a swollen right nostril. So she is getting nose drops in both nostrils to help keep her airway clear.

3) Riley does not currently exhibit the skeltal abnormalities that can be associated with 22q. This does not mean that she may not develop them, but currently she does not exhibit any. Her palatal muscles may not be formed correctly thought and that may be leading to some of her reflux come back up her nose. This could lead to eating/speech problems in the future, but we will have to see a specialist in a couple of months regarding this.

4) Tomorrow Riley will be able to try out some bottles again due to her doing a good job keeping down the constant feed formula and her zantac regimen may be helping control her reflux. An occupational therapist will also give Riley some radioactive mixture with her formula and then be able to watch it go down to try and make sure that it is going down where it is supposed to.

5) She has also been moved out of her warming bed and into a true nursery bed. She has been swadled now for almost 24 hours and is in heaven. No more nakedness under the lights and exposed to the world, with her eyes covered. The nurses told us that she has slept for most of the last 24 hours which is what we need her to do - so she is perfectly content with her world at the moment.

So I am taking today as a win, mainly because we need it and because I'm also the score keeper/referee/coach. It would be a huge win for the day, except for the fact that my wife was having chest pains and not telling anyone - she needs to learn that she needs to take care of herself. I can only take care of one sick Jacobs girl at a time.

Thank you again to everyone for their thoughts.