Two weeks....January 20, 2013

The past few nights Ian has decided to play games...he would desate around the 6 to 7 o'clock hour, however he would recover quickly and get his levels back up...last night Ian decided to play his game a little earlier...around 5:15 I got a call from Brian that they needed to intubate again....his levels dropped again and this time he did not recover as quickly as they were hoping as well as it being the 3rd night in a row he did this, the MD's felt that he needed more support then what the bi-pap was providing him. His current settings on the vent are the same as what is one the bi-pap except he is getting more pressure into the lungs. Here s a link to what another mother wrote when explaining respiratory issues with her child who has SMA 1. Please remember that because of Ian's variation of SMA, somethings are similar but not everything and there is no way to really know....
http://www.smasupport.com/sma_treatments.htm#Respiratory.

So as of now, Ian is intubated again....we don't know what this means or does not mean for him...Brian and I have some things to think about and more tough decisions to make....we have had some discussions with the MD's regarding this....

One step at a time and we will figure it all out....thank you for all the wonderful support....

Many of you have asked how Becca is doing....so far she seems good. We have been keeping her updated at her level and her language. We are taking it one step at a time with her and will figure it out as well....just like we have with everything dealing with our "Normal"....