July 2, 2014

I know I haven't been keeping everyone up to date on Boston. I'll get to that soon. First off I'll talk about Molly! She has had 3 really good weeks. She is now 9 months old actual, 6 months adjusted due to her being born 3 months early. We have been sitting her up and her head control is actually pretty good. She can turn her head when she sits up. Physical and occupational therapy are supposed to start coming by 4 times a week....I think. She needs it. We have been keeping her from just lying in her bed all day. We put her in her bouncy seat and in her boppy pillow and hold her.  And next up is a bumbo seat! Both grandmothers have been able to hold her and today Aunt Nicole will get to hold her! This is very exciting...both Molly and auntie are very excited.

Boston.....we had her entire medical record sent to the Boston docs. It took about 24 hours for her medical records to be downloaded and put on CD due to the fact that her record was 5,000 pages long. So, Boston got the records and a couple of days later decided they wanted paper copies of only specific things. Those were resent yesterday. Now, we wait. We have not been given a timeframe as to when we might know something one way or another. It sucks having to wait, but we are used to that. Now we pray for no infections until then. Although we did have a positive respiratory culture taken 2 days ago. Thank the good Lord no blood infection though. She is currently on 2 antibiotics until the respiratory culture is identified.

She is still getting omegaven. At last check (Monday) her direct bili was 18.9. It's not going down like I hoped it would. But we also had about a 3-week setback with that last round of sepsis and dialysis. Her liver labs are only done every Monday now. Her color is so much better though. She no longer looks orange and is now just a slight shade of yellow. Yesterday marks 8 weeks on omegaven so far. Please pray that she stays infection free and that the Omegaven helps her liver!

Thank you to everyone who has signed up for Molly's walk. We have only gotten about 6 forms so far. Please send in your forms so you are guaranteed a shirt in your size. We have now added 2XL to sizes due to repeated requests.

Thank you to everyone! Thanks especially to Nicole for working so hard to make this run a success. Thanks to mom and Pat for helping to get the word out and getting sponsors.