Emily loves to show off her milk mustache!
We went to clinic today and Emily went from 17.2 kilograms to 17.4 kilograms in her weight. She was excited because this meant she got a prize from her nurse for not losing anymore weight! She still isn't eating well but we are thinking she lost last week from being off the Prednisone. I have to write down everything she eats for the next week and we will go from there. I am hoping she will not have to have a feeding tube!
Emily's counts are still down and they are stumped as to why. (Surprise, Surprise!) It could be a number of things from the Epstein Bar virus to something being wrong with her bone marrow. She had lots of blood taken today for tests and they are going to go in and take some of her bone marrow to see what is going on. Hopefully it is just being "flaky", as Dr. Boyer put it, and will get back on track with time.
As many of you know, when problems arise, I can't rest until they are solved. This can be a great strength(so I'm told) but it can also be a GREAT WEAKNESS! I know I need to stay positive and not worry; this is my GOAL but I have to admit I have been dreading this roller coaster! I was hoping that this time we wouldn't have to ride it! Life could never be that easy right?!
In this situation I can't do any "fixing" there really isn't anything we can do except WAIT, WAIT, WAIT! You would think I would be really good at this by now but I haven't seemed to master it...maybe this is why I keep having to practice. Maybe someday I will learn!
Thanks for keeping us in your prayers.
7 comments:
Jill it is your strength! You are an amazing mom! I can't believe all that you have been through with flying colors. You are my inspiration! Life is truly a roller coaster ride that we all signed up for! Hang on and even put your hands in the air every once in a while! I love you sis, I feel like I am on the ride with you! My mother always tells me that the scriptures tell us that it came to pass! Nothing ever stays! This too will come to pass! You're in our prayers constantly
You can't imagine all the prayers we say for our precious Emily, She looks so good, and acts so much like herself, it gives me hope everytime I see her. She has an amazing family, Jill you are incredible all you are doing, I can tell she is progressing in her home school also, so now you are even a school teacher along with nurse, and a million other titles, but most of all the best mom and wife you could possibly be. love you!!!
Jill,
You are an amazing blogger! I absolutely love your blog!!! I just realized that you have always been good at recording in a journal! I remember when you were a teenager and would write in your journal every night before bed! I love that you are recording Emily's progress so we can all share in the joys and pains! We love your family so much!
Sis,I love Monica's "and it came to pass..." reference. I also love the "put your hands in the air" idea!! Because you are right, there is so much that is not in your control. The things that are, you are doing beautifully. Give your worried heart to your father in heaven, he will take it and leave hope and peace in return. The problem is... you have such a BIG heart!! It leaves more room for worries to sneak in!:) I also know that you are one of the STRONGEST people I know. I love you Jill. We love you all and our hearts and prayers are with you always.
Jill, your strength is an example to all of us. I am glad you are blogging so that we can be strengthened by your courage.
It is so awesome to see Emily so passionate about learning! How neat for her during this difficult trail that she has a Mom taking the time to create such a great environment of learning and curiosity.
LOVE YOU!
Jill, Keep me updated! It's almost day 100 and I'm here in New York hoping everything is going well. Hope you are enjoying that warm weather because it is sooo cold here!
Dangit! I am soo bummed to hear her counts are down. Just as we were all thinking Emily was in the clear. Why can't life be easier sometimes? You are such an amazing family, and you will pull through stronger than ever, just as you have with every single challenge you have faced. You are in our prayers constantly!! p.s. Kylie misses Jackie soo much and they were so sweet to think of her last weekend. She was soo excited...but bummed she missed the party..we were out of town. Next time for sure! Hang in there!
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