I feel like the Tasmanian devil today. It’s been a whirlwind of zipping around my house getting things done, researching on the internet, talking to people at CHOP in Philly, Sloane-Kettering, homework with the boys, getting Quinny to the doctor(thankfully Woody took him) for a sinus infection, and taking care of Ronan. A busy day to say the least. I’m trying not to second guess anything, but I want to make sure we have all of our bases covered. I can’t look back at anything we are doing with Ronan and have any regrets. I really do feel like we are in good hands at PCH, but I still have to put my feelers out there to be sure. I am just feeling unsettled tonight. I want proof that what we are doing is working. I am trying to be patient but it is becoming harder and harder everyday. I feel like every success story I am hearing involves Sloan-Kettering. But it is so hard for me to imagine taking Ronan away from our home and his brothers. We will cross that bridge when we come to it… I just need to sit back and settle down. That is actually bullshit. Sitting back and settling down is not going to fly anymore. I am his mother, he is my baby boy, I need to know everything possible is being done to cure him of this disease. For good. In the meantime, I will be doing everything and anything I can to reassure myself that we have made the right decision. I feel a little better knowing that Woody has been in contact with Dr. Kushner at Sloan. He has been so great about talking things out with Woody. So thankful for that. I can’t even get Dr. Maris at CHOP to return my phone call or email me back. I will be sending him Ronan’s info as well.
Ronan had a good day today but I can tell his levels are starting to drop. He was a little less active and pretty clingy. He slept a lot today and this evening he had a slight fever. It’s gone now but I will be watching him like a hawk tonight. We go into the clinic tomorrow morning to have his blood levels checked and his Broviac dressing changed. UGH. We had a lot of quiet time together today and tonight. Liam and Quinn had basketball practice so Ronan and I played outside while they were gone. Well, not so much as played, but sat in a chair and enjoyed the cooler weather. We watched the clouds roll in around us and I prayed out loud with Ronan for him to be healed, forever. Then it started to rain on us. We sat and let the rain drops fall and I told him they were washing away his owies. He agreed with me and giggled. We watched “Earth” again tonight and after about 20 minutes he asked me to turn it off because he was tired and wanted to go to sleep. He is out like a light now getting the rest that he needs. We have a busy day tomorrow at the clinic. I’m beyond beat but I know that I won’t get much sleep tonight. One day I will enjoy my sleep again, but not now. Too many nightmares and to many things to keep me up at night. Goodnight to all of our angels out there. I hope to see some of you at the baseball game on Saturday!!