Well. . . Caleb had a great weekend, his daddy came to stay for the weekend and wow did they have fun. Caleb's skin was really clearing up and he was doing well.
He even had his first few bites of baby food. He is still trying to get used to the texture difference. But he did VERY well. That's our Bubber. OH by the way we have two nicknames for our tough little kiddo, Bubber and Ca-Bay(pronounced Kbay).
Unfortunately, his Cyclosporine levels dropped over the weekend and his skin started peeling again and he got dehydrated and needed two fluid boluses (quick doses of fluids) and one Albumin (blood by-product that prevents the fluid from going to the wrong spots) bolus. Now he is a little too 'puffy' so we are hoping his diuretics that he takes will help him get rid of some of that extra fluid. He wasn't in a great mood this morning, but as the day goes on he is getting a little better. He was able to watch his Baby Mozart video that he loves so much. Which by the way the hearing aid is really helping him. AMAZING!!!! We hope that all he will need is the hearing aids. But after his video he got cranky and wanted to go back to bed. He is more tired than normal too because he is taking a medicine to help him with itchiness caused by his skin issues. He has also been really finicky as far as feeding goes. We have heard that Cyclosporine can cause you to have a very bad taste in your mouth or can cause nausea so we are wondering if that is it. We hope he will overcome this 'aversion' and start eating more again.
AND MOST OF ALL THANK YOU. Thank you too all of you for the gifts you are sending to the hospital, donations, prayers, donated flight miles, candle fundraiser, etc. We are so blessed to have a circle of friends like you all. I cannot begin to thank you all enough. I wish I could do something for you all as you have done SO MUCH for our family. It is very difficult to be away from everyone for so long, but when wonderful people like you all watch over us as you do........it makes it a little easier. We love you all and thank you.
For more pictures of Caleb please visit http://www.kodakgallery.com/AlbumMenu.jsp?rand=1173212311325&UAUTOLOGIN_ID=813113751107&UAUTOLOGIN_ID=813113751107 If this link doesn't work please let me know!!!
3 comments:
I am sorry to hear that Caleb isn't having a good day, but he is so strong!! I am glad he got to have a good weekend with his Daddy!! He is so strong and so amazing. I will be bold enough to speak for everyone and say that the only thing you could possibly do to thank anyone is to continue taking care of him and being the best parents that you are so he can get healthy and get home!! That is all anyone wants and that is why we are all more than happy to help you in anyway we possibly can!!! We love you all so much and Haleigh just can't wait to meet her Aunt Sarah and Caleb (and see Uncle Brian again), but she knows it is worth the wait so we can have a lifetime of memories!!! We love you and miss you terribly!! Give big hugs and kisses to Caleb and let him know his Aunt Jen loves him and so looks forward to the day when I can tell him myself! God Bless you all!! Thanks for all the great updates!! We love you!!
Sounds like a good weekend with daddy and I hope things start to look up even more from here on out.
Hugs,
Crystal and Eva (22 month old CHARGEr)
www.babysites.com/sites/crystalm1476/
Hi Caleb,
Hang in there little guy, and I hope that the fluid boluses and diuretics do their job soon so you are feeling better again. I looked at all of your pictures--you are sure a cute boy. Stay strong!
Sarah (mom to Evan, 20 months with CHARGE)
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