Brystal had to change formulas again! This is the 5th time. Now she is on Elecare. I'm not sure how she is doing with it since we've only been on it since Thursday! We can't even get it at the store like other formulas. We have to order it through a pharmacy. Brystal saw a GI Specialist last Thursday and he was really nice and handles all of the EB children for the hospital. We had been giving her cereal in her bottle at night and he wasn't too happy about that. I didn't think it was so bad since her Pediatrician said it was okay. The cereal has milk or soy in it and it emflamed her esophagus so it was like starting all over again. (IDK if I've mentioned but she has SEVERE acid reflux!!) So now we are no longer using the cereal! He wants us to try baby foods when she turns 6 months which is in 9 days! I am so nervous! I am worried that it will cause problems. Her GI doctor ordered for her to have a swallow study since baby food could make it worse! We did the test today. She looked so cute in her little gown at the hospital. The test only took 2 mins! And they didn't find any restrictures in her throat! YAY!
Brystal has been blistering so much more frequently! I feel like we have a new sore everyday! She has been even more fussy then before! It has been very exhausting. So Brendan and I sat down and had a long talk. We decided that it was best for her if I stayed home. So I put my two weeks in and my last day was Friday! Its been so crazy these two days home! We have been trying to get everything finished! I have got to admit I love it! I know it has only been 2 days but I love spending time with my girls. It is nice to not to have to rush in the morning to get ready and come home from work make dinner and rush through play time and bed! I feel as if a weight has been lifted off of me. I don't have to stress out about work or missing out on my girlies growing up!
Last month we had a EB Social for the hospital and we got to meet other families here in Arizona. It was a lot of fun! It was nice to meet other families that are going through or been through what we go through! The kids were so adorable. We went to the Botanical Gardens. There is a butterfly exhibit there. It was pretty neat to see all the butterflies. I can't wait to see the pictures that were taken!!!
I know I am leaving some things out but I cannot think at the moment! I am going to try my hardest to post more often :) I should be able too since I'll be home all day with my babies! Have a great night! I hope I didn't keep too many of you waiting for an update!
Didn't realize you have a blog going, just figured it out. Glad you are able to stay home with Brystal. We'll keep you all in our prayers.
ReplyDeleteEileen and Tom