Friday will be my daughters last dose of the dreaded Prednisone! YAAY! I am excited but nervous at the same time. Since her diagnosis and treatment, she has always been taking it. That is what has been keeping her intestinal inflammation at bay and now that she won't be on it anymore, it is a little scary. The Remicade, however, is taking the place of the steroid and has worked very well for her and is safer. It is almost as if she was never sick but we all know that isn't true and she will have this disease forever. My point is, that the steroid was like a "safety net" in a sense and to not have that anymore is a little unnerving. This will be the true test of the Remicade to see if it is really working on its own. Her next infusion is on 12/2. After that, it will be every 8 weeks. The only meds she will be taking now is the Pentasa (maintenance med) and Remicade. So glad to be almost done with the steroid! Even though my daughter has been good about taking her meds, it is still heart wrenching to have to give it to her when I know deep down inside she really doesn't.
My family and I will be going away for the Thanksgiving holiday. It is a much needed break! I will be bringing all the meds with me. Even those she doesn't need right now.....just in case (like a safety net...lol). My only worry is being away from her docs and the hospital. This hospital is all about children and had been great with my daughter. Being hours away from it is a little worrisome for me. I just have to not expect something to go wrong.
I hope everyone has a safe, happy and blessed Thanksgiving! My next blog will be after the holiday. I will be busy packing!
Until then, Laugh and Love Life!
Thursday, November 20, 2014
Monday, November 10, 2014
It has been awhile since my last post ..... just been busy. I had company for the weekend and a birthday party to throw for my oldest daughter. Did a lot of cooking and preparing but was feeling good. However, I am feeling the effects of the busy weekend today. UGH!
This website I am constantly turning to for support (it is an awesome site; I did mention before) told me about this website that cooks and bakes without using grains, dairy and legumes. I took a peek at it and many of the recipes look really good. I haven't tried anything yet but would like to get a cookbook to try some of the recipes. I think we all could use a dose of healthy eating! It will also be good for my daughter's gut as well as the rest of us. I just hope these cookbooks will have something in there she will eat! Very picky!
She had her 2nd Remicade infusion last week and is still doing very well. I sure hope this lasts for her! She gained 6 lbs between her first and 2nd infusion. That is a lot for 2 weeks but good since she was underweight anyway. Her blood work came out much better. Although, her blood count was a little low. Her GI doc said that is could be because she is gaining weight and the blood isn't used to going to these "new" places and needs time to adjust. He didn't seem concerned and is going to wait to see what the blood work looks like the next infusion. It is going to be in the back of my mind about the low blood count until I know there is nothing to be concerned about. The next infusion is scheduled for 12/2. After this last starter dose, her infusions will be every 8 weeks.
The website that I mentioned is:
http://againstallgrain.com/
Until next time....Laugh and Love Life!
This website I am constantly turning to for support (it is an awesome site; I did mention before) told me about this website that cooks and bakes without using grains, dairy and legumes. I took a peek at it and many of the recipes look really good. I haven't tried anything yet but would like to get a cookbook to try some of the recipes. I think we all could use a dose of healthy eating! It will also be good for my daughter's gut as well as the rest of us. I just hope these cookbooks will have something in there she will eat! Very picky!
She had her 2nd Remicade infusion last week and is still doing very well. I sure hope this lasts for her! She gained 6 lbs between her first and 2nd infusion. That is a lot for 2 weeks but good since she was underweight anyway. Her blood work came out much better. Although, her blood count was a little low. Her GI doc said that is could be because she is gaining weight and the blood isn't used to going to these "new" places and needs time to adjust. He didn't seem concerned and is going to wait to see what the blood work looks like the next infusion. It is going to be in the back of my mind about the low blood count until I know there is nothing to be concerned about. The next infusion is scheduled for 12/2. After this last starter dose, her infusions will be every 8 weeks.
The website that I mentioned is:
http://againstallgrain.com/
Until next time....Laugh and Love Life!
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