Britt and Ben, having fun with Emily! Nurses CAN be fun!
A visit from Winston!
Painting, and coloring are always great ways to pass the time in the hospital!Emily woke up feeling MUCH BETTER!
Her fever broke during the night and her diarrhea slowed to almost a complete stop by this afternoon. She looks so much better!I was so happy to see her smiling face when she woke up. She even let me give her a bath and do her hair she was feeling that much better!
The test results have all come back negative other than her ear being infected which is very odd since there is NO draining whatsoever and she has tubes. They tried to say the whole sickness was caused by this but I wouldn't buy it. I was able to convince her doctor, telling him that she gets ear infections all the time and they NEVER come with vomiting, diarrhea and fevers. He agreed after looking into her healthy looking ears.
I asked him if we should keep her on the Megace(the appetite enhancing med which is full of female hormones) or put in a button. He was all for the Megace and told me we should keep her on this until she's off her immuno-suppressants in June..."Then, if she stops eating again we can work on the 'behaviors' that are causing this". The mama bear in me came out and I looked at him and said(as nicely as I could of course) "This is NOT a behavioral issue! She eats when she is hungry, this is not a power struggle problem." He just looked at me and said, "Well, it might be true but she is also on Concerta which is making her not hungry too. If you can just get her behaviors worked out then things will work out I am sure."
This has been a discussion and concern since last summer...I have struggled with not wanting to take her off it because she has done so well AND I saw absolutely NO change in her eating when she started it. She has never been a big eater!
Anyway, as I was venting my frustrations to Matt, going on about how stubborn this doctor is, a little voice came into my head saying, "Maybe you are letting your own pride get in the way, remember to be humble."
I have been really trying to listen to what is best for Emily and not just try to be "right". I am also really trying to listen to the spirit with what is best for Emily...Megace or a button. I asked our SCID email group and got quite a horror story from one of the moms on the horrible side effects, one in which shows that it inhibits T-cells to develop!...Isn't this what we are trying get MORE of?
Even though the doctor is pushing Megace, if we feel the spirit telling us to do the button I've got to be brave and just tell the doctor this is what we want to do.
Sorry for rambling, can you tell I've been in a hospital room ALL day?
Emily has had such a wonderful attitude today. At times she would tell me she was feeling yucky all over. One time she stopped coloring and said, "Mom, do you see how happy I am?"
"Yes"
"Mom, I am feeling pretty yucky but I am trying to be happy and make the best of it."
Another time she stopped her coloring and said, "Mom, can we say a prayer"
After her sweet prayer asking Heavenly Father to help her get better so she can go home tomorrow she was like a little girl on a sugar high. She was singing and dancing telling me she had so much energy she couldn't get rid of any!--The faith of a child :) I am seriously amazed at her maturity!
Emily's highlights today were Mike (the child life guy) coming in and seeing her. a huge dog coming to see her AND another child life friend coming in to make bracelets, sand art, and lots and lots of coloring things! She was busy all afternoon and evening!
It has been a good day.
Her fever broke during the night and her diarrhea slowed to almost a complete stop by this afternoon. She looks so much better!I was so happy to see her smiling face when she woke up. She even let me give her a bath and do her hair she was feeling that much better!
The test results have all come back negative other than her ear being infected which is very odd since there is NO draining whatsoever and she has tubes. They tried to say the whole sickness was caused by this but I wouldn't buy it. I was able to convince her doctor, telling him that she gets ear infections all the time and they NEVER come with vomiting, diarrhea and fevers. He agreed after looking into her healthy looking ears.
I asked him if we should keep her on the Megace(the appetite enhancing med which is full of female hormones) or put in a button. He was all for the Megace and told me we should keep her on this until she's off her immuno-suppressants in June..."Then, if she stops eating again we can work on the 'behaviors' that are causing this". The mama bear in me came out and I looked at him and said(as nicely as I could of course) "This is NOT a behavioral issue! She eats when she is hungry, this is not a power struggle problem." He just looked at me and said, "Well, it might be true but she is also on Concerta which is making her not hungry too. If you can just get her behaviors worked out then things will work out I am sure."
This has been a discussion and concern since last summer...I have struggled with not wanting to take her off it because she has done so well AND I saw absolutely NO change in her eating when she started it. She has never been a big eater!
Anyway, as I was venting my frustrations to Matt, going on about how stubborn this doctor is, a little voice came into my head saying, "Maybe you are letting your own pride get in the way, remember to be humble."
I have been really trying to listen to what is best for Emily and not just try to be "right". I am also really trying to listen to the spirit with what is best for Emily...Megace or a button. I asked our SCID email group and got quite a horror story from one of the moms on the horrible side effects, one in which shows that it inhibits T-cells to develop!...Isn't this what we are trying get MORE of?
Even though the doctor is pushing Megace, if we feel the spirit telling us to do the button I've got to be brave and just tell the doctor this is what we want to do.
Sorry for rambling, can you tell I've been in a hospital room ALL day?
Emily has had such a wonderful attitude today. At times she would tell me she was feeling yucky all over. One time she stopped coloring and said, "Mom, do you see how happy I am?"
"Yes"
"Mom, I am feeling pretty yucky but I am trying to be happy and make the best of it."
Another time she stopped her coloring and said, "Mom, can we say a prayer"
After her sweet prayer asking Heavenly Father to help her get better so she can go home tomorrow she was like a little girl on a sugar high. She was singing and dancing telling me she had so much energy she couldn't get rid of any!--The faith of a child :) I am seriously amazed at her maturity!
Emily's highlights today were Mike (the child life guy) coming in and seeing her. a huge dog coming to see her AND another child life friend coming in to make bracelets, sand art, and lots and lots of coloring things! She was busy all afternoon and evening!
It has been a good day.
7 comments:
Wow! How hard it is to tame the mama bear! I have had a taste of that myself! However, as much as the mama bear might need to be "tamed" there is a reason for that instinct, otherwise our Father wouldn't have blessed us with that! You are amazing and have such great faith and knowledge of our Father's plan! I always get so uplifted with your posts!!! :)
Sorry you are back up at the hospital. We will keep praying for Emily to get to come home soon, and that you will be guided to know which option is best for her, the medication or the button.
My nephew's hair started falling out yesterday and today they shaved it. He is very upset about it, and I wished I could have Emily talk to him about it. She would know just what to say :)
Much Love and Respect - Cyndy
You are so good to hold your own with the doctors! Emily's comments are so sweet. We're praying you come home soon.
We went with your idea of green on our living room wall. Thanks for the great idea! Now to just get rid of these paint headaches. Miss you guys!
LOL, I was just thinking of you last night and how you and I have to stay close to the spirit to know what is the best thing to do for our children! How loved we are to have that option and not have to go through life guessing or never being able to know what to do.
God is inspiring me for some more awesome experiences to share with Emily and your family! I'm still learning the language (spirit to spirit) but when I get it figured out, I'll let you know.
If you guys are still at PCMC, I'll stop in on my way South!
I am so happy she is feeling better! Jill you are an amazing mother---I am so proud of you! I love her tenacious spirit trying to make her self happy by coloring! She is an example to all! We love you! Thanks for sharing the good news! Life is a rollercoaster ride for sure! You're in our prayers!!! XOXOXOXOXO
P.S. Let me know when Pico(the girl version of Paco) arrives at your house!
Jill, how can I have such a wise wonderful daughter, I know you need that "mamma bear" instinct that you have veen blessed with, you are in tune with the spirit and that is a great comfort to your parents, you are amazing and lift me up and help me to be a better person, Emily is sooo blessed and is being watched over he faith is amazing to us all. love you!!!!
One of the things that I LOVE most about our sweet Em is that she knows how to communicate with her Heavenly Father and most important she KNOWS that she knows who she is... It makes me cry everytime you post about her asking to pray... I love that you have taught her that.. and I know YOU are the ones that did.. because I remember Jackie at that age when I was at your house would ask me stuff like that too.. We prayed ALOT when you were away the first time.. doesn't that make you feel good that your kids.. GET IT?!!!
Post a Comment