Cristian had a lot of visitors today, my Grandfather, his Brother JC, my Aunts, some of my Cousins and many of my childhood friends. I spoke to one of the doctors at St. Mary’s who informed me that Cristian is getting weak and is having trouble breathing so they will raise the setting of his C-Pap from 8 to 10.
On my way to St. Mary’s to spend the night with Cristian, I called my uncle Fito in PA and Fito was in church and put me on speaker phone where dozens of people prayed for Cristian. It was beautiful. I am hoping 09 brings Cristian all the health and happiness he deserves.
Jenelle and I opened Cristian’s gifts for him and read him his Christmas cards. Cristian hasn’t been the same. Cristian looks tired and sad. We try everything to make him happy but I guess Cristian is very bored because he has seen all his almost 100 DVDs over and over again and we have read all his books to him.
Both Jenelle and I spent Christmas Eve with Cristian. We watched TV. At times Cristian is breathing fast and his heart rate is high.
Cristian had his MRI today at Memorial Sloane Kettering. Cristian’s last MRI was on 10/16/08. Pontine Glioma is a brain stem tumor, “the tumor is located in the Pons.”
Cristian had a pretty calm day today. Cristian did complain about stomach pains. Friday morning join us in prayer as Cristian goes back to Memorial Sloane Kettering for an MRI. We need to pray for good results.
I called Dr. Yadoo today and he was concerned about Cristian’s belly being distended. Cristian has been having severe stomach pains. Cristian has been gassy and retaining stool. Dr. Yadoo has increased the amount of myrilax so that his bowl movement can increase. Cristian is also on a new formula which is more elemental and easier for him to digest. Overall, Cristian had a good day and nothing out of the ordinary to report.
Cristian is getting physical and occupational therapy mon thru fridays. We are hoping Cristian can regain use of his body. He sometimes goes to his rehab on a special wheelchair/ carriage/ stroller that is designed for kids like him.
Jenelle asked me if I have been hearing the noises coming out of Cristian’s Trach. I said that I have and Jenelle says that the noises are Cristian using his vocal chords , trying to control them and perhaps trying to speak. I sure hope and pray that he can speak to us again.
We meet with the entire team at St. Mary’s to go over Cristian’s game plan / expectations, and basically just to get acquainted with each other. Cristian was then moved to a private room, he seems to be comfortable in the private room.