Ok, I finally have a few minutes to recap the last few days!
Tuesday was a long and frustrating day. We knew Monday we were ready to be discharged. The only things we needed to accomplish were seeing Hematology and getting a Vitmain K infusion. We sat and sat and sat all day! In the end Hematology didn't come. (Basically, they don't know what to do with Alex because he doesn't fit in their normal pretty little boxes, so they decided just to not show up) Vitamin K took all day to get, so wwe weren't discharged till 6:00!
Tuesday night we spent the night at our good friend's house and had a blast! Samuel, Lauren and Alex played and enjoyed their time together. Missy and I may have laughed harder and had more fun! And she kept me up WAY past my bedtime. We felt like kids having a sleepover. It was comical at times when we would both be doing some medical intervention and look over at each other and realize how abnormal our lives are, but how comfortable we have become in them. Alex and Samuel thought it was great that they got meds at the same times and had to endure the same interruptions to their play. So all in all a huge success and I am sure not the last "slumber party" we will have. Ben and Missy- Thank you for so graciously accepting us into your home and making both Alex and I feel so comfortable!
Wednesday was the big day! The much anticipated arrival of Mimi!!!!! Alex woke up and the first words out of his mouth were "are we going to get Mimi?" Well, her flight arrived at 5:00 PM. It always brings me great joy to see the love between my Mom and my Son. I do not know two people who wholeheartedly love each other more or enjoy each others company more. It is just a true, pure relationship and it makes me very happy to watch.
Our hotel is as wonderful as advertised and we are really comfortable here so we would willingly use Hotwire again even though I was panicked about it!
Yesterday, we had appointments at the hospital. Alex saw our surgeon who took one look at his Jtube and decided to change it! I am so hopeful that this will be the end of his pain!!! We are not 100% sure this is the cause, but the button is too big and it is reasonable to change it and try and fix the problem. I love Alex's surgeon. He has gone out of his way to accomodate us. If you remember in September he came into the hospital on his day off to see Alex and yesterday he saw us in clinic on a day he didn't have clinic. It really means a lot to have a dr who puts Alex's needs first! Mimi also had 2 appointments and then we headed to the zoo for a few hours to enjoy the 80 degree weather!
Today we are off for more appointments. Thank you to everyone who has kept Alex in their prayers. And for all the messages I have received. I cannot tell you how much they mean!