Friday, April 10, 2015

Facebook update from Help Anton

Day +14 At this exact moment two weeks ago our baby was getting someone else's cells transfused into his body in hopes that his skin will get tougher and his quality of life will improve. The past two weeks have flown by and time has stood still all at the same time. Anton is still doing so so good! He is throwing up about once a day which is sad but it could be worse. Well actually when he threw up today it was pretty bad. If you don't want to read about throw up skip down a little. We had just gotten back to the Ronald McDonald House from his clinic appointments when Anton started yelling and crying that he had to go potty (which either means he has to go potty or he is about to throw up). We were in the elevator and I was in a panic. I was holding Anton and two bags and I knew he was about to throw up. We got to our door and I has just enough time to take his mask off before he started throwing up. I was holding him and his mask and kicking the door so that Jason could come open it. I guess I need to start carrying a throw up bag just in case. He normally only throws up in the morning so this totally caught me off guard. He was fine after he threw up. He was pretty sleepy today which is normal. I have noticed for the past few days that Anton's hair is thinning out a little bit but nothing anyone else would notice. I was so hoping he wasn't going to lose his hair because that is the thing he was most sad about leading up to transplant. Then today durning dressing change I noticed quite a bit of the hair from his head was on his bandages then when we were done with dressing change there was a little pile of his hair on the chux pad. I was so sad knowing it is just a matter of time before he loses it all... I told him that his hair was getting a little bit thinner and was starting to come out and he lost it. He is so sad. Kenya came in to see what was making him cry and he told her he had some very sad news, his hair was coming out. We told him how handsome he would look and he just cried and cried and said he wouldn't look handsome without any hair. Then I remembered how much he loves babies so I told him that babies were bald and he thought babies were cute and he said not without hair they aren't cute. So then we looked at pictures of bald babies and he agreed that they were very cute after all. I also told him about all the sweet people who have sent him hats to wear when his hair falls out and he said "ya, I'm going to need my hats when I don't have hair". Sweet boy! I'm still kinda hoping it won't fall out but I'm pretty sure it's only a few more days before its gone. Then during dressing change while I was changing his central line dressing blood started coming out where his central line enters his body. I was freaking out (well on the inside). I called the BMT doctor on call and she said as long as the bleeding had stopped it was fine to wait till tomorrow to be seen. Thanks to the Ronald McDonald House Jason, Kenya, and Judah got to go see Disney Frozen on Ice tonight! They had a blast. Tomorrow a local news crew will follow Anton and I around our appointments at the journey clinic and interview us about EB Research Partnership, Dr. Tolar's work (they will interview him as well), and the BMT. It should be fun or super nerve wracking or maybe a little of both, ha. I'm actually pretty excited about it. I think those are the major things that happened today. - April 10, 2015 at 12:14AM

No comments: