Ok...I did cry yesterday..it was to say a very frustrating day. I won't rehash the whole thing..let's just say after about 10 phone calls I realized that Kyle's referral for the "god" doctor at Boston Children's Hospital was not submitted 2 weeks ago, it was sent on Friday. After going around and around I finally got his nurse secretary on the phone and asked (ok begged) her to please schedule us an appt without all his paperwork (which she still didn't have) She was so nice...you know the nice kind that as your telling your kids story she's so nice that you start to cry..she had all of Kyle's information from when we were there last and she made an appt for a consult the second week of March. After the consult we will get the date for all the inpatient testing. If we make it that long...I can tell you something is not right..his stomach and bowels are not acting right, lots of retching and gagging, lots of residuals from his g tube. I feel very helpless..he now asks me "to please help him" when he feels a bad episode coming on. It is to say very heartbreaking. So we wait and we hope and we pray to the man upstairs (who I'm still working on trusting again)
On another all three kids woke up with fevers this am, Mark is on a business trip, and I'm almost out of Motrin. It could be a long day...they are all being amazing, none of them feel good (esp. Kyle) but they are being patient and good...so I'm so thankful for that. I have to add a picture..one of Kyle with no oxygen on his sweet face. The boys had just had a bath and Alex was on her way to the dance with her Daddy. Kyle's hair was a little out of control, I think it's time for another hair cut!