Hi All....Hope everyone had a Merry Christmas and your new year is off to a great start. Ethan is doing well and had a great Christmas visiting with family in Florida. Looking forward to a fresh new year and all the promises it holds!! This week has been eventful to say the least. For the first time in 10 months Ethan threw up his NG tube!! Let me just say to walk in and find him with half of it out his nose and the other half hanging out his mouth was traumatizing, more for me than him I suppose. Only solution was to cut it as short as possible and have him pull it out his nose. Gives me the shivers just thinking about it. The doctors have agreed to give him a month without it to see if he can maintain his weight. Good thing high dose steroids are part of his monthly protocol...he is eating me out of house and home :) Yesterday was a chemo day. He had his spinal chemo but they are holding his monthly dose of Vincristine because the neuropathy in his foot is so severe. He has not regained usage and the pain is far from under control. We met with a Pain Management Specialist yesterday to go over some options. Looking at potentially doing nerve blocks to help with the pain but unfortunately it wont help with the loss of muscle control. Consensus seems to be that only time will tell and that we must be patient. He also had a CT scan yesterday of his lungs to monitor the fungal nodules. Hoping that we can stop his daily antifungal IV infusions very soon. A BIG thank-you to all our blood donors out there!! Ethan has had 32 units donated into his account in the past 2 months. 14 of those units came from a blood drive held in his honor by St Marys Elementary School!! Just one more reason why we love our school family! So over the past couple of months Ethans little brother Ian has started to question why He is the only one who has to go to school basically thinking skipping school and spending all day at the hospital might be fun. Well he was lucky/unlucky enough to get to experience a full day of doctors appointments on Thursday. A do-it-yourself oil change gone horribly wrong left us scrambling Wednesday night for Ian a ride to school and Kevin a way to work. By the time my Dad called with a recommendation for a quick short term fix we had already told Ian he was missing school the next day. Never one to go back on my word Ian got to go with Ethan and I and Kevin headed to work. If the 5:30am wake up time wasnt enough to make him change his mind the snail paced Wi-fi with no Youtube did him in. We hit the road at 6:15am and didnt get back home until 4pm. He said that had he know the hospitals internet stunk that bad he would have just gone to school!! All in all the day wasnt too bad. He got to help Ethan get prepped for his procedures and even got to watch him go to sleep. I will say that a day with two kids, slow internet and a hungry, hurting Ethan made Mommys day long. Im thinking that next months chemo appointment will be back to just the two of us and Ian will gladly suffer through a day of school.
Posted on: Sat, 10 Jan 2015 03:22:03 +0000
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