I am so proud of this girl. When I think of what she has been through the last 3 months, I realize how incredible she has been at handling whatever has come her way. She has been in the hospital for so long now that she has learned the ropes. When the blood pressure cuff deflates after taking her blood pressure she now announces to the nurse “ALL DONE!” and points at her leg. When it’s diaper change time she likes to stuff the cotton balls in her diaper that they place there for her urine tests, and when the respiratory therapist comes to do her breathing treatment she no longer fights the mask, she just holds my hand and gets very still. I am so moved by her strength and her motivation.
She had a great time with her Daddy this morning, went to color in the playroom, rode her wagon down the hall and did lots of visiting. We had a small episode where her ddavp shot didn’t work and her sodium shot up when her body let go of all that fluid at once, so we scrambled to get her another shot and get some fluids on board. Managing Phoebe’s fluids is a full time job and somewhere along the line I have become very adept at how to manage Diabetes Insipidus, intake vs. output, specific gravity tests and how to detect dehydration. I have learned more medical terminology in the last 3 months than I ever knew before. I’m told cancer-kid parents become experts in their child’s specific type of cancer, chemo protocols and care. I have met parents in these halls who have been doing this for three years. The marathon.
I try to remind myself of the marathon when I’m too stressed to eat or when I’m skipping important things in a rush to get back to the hospital. This is our life, and it will be this way at least for a long season. I can’t rush through this rough patch and buckle down until it’s over, that’s no way to live for an extended period of time. I need discernment in how to pace myself. So, here’s to the marathon…
I don’t have any news about being released to go home. Phoebe’s sodium is of course still the issue, so we are still hoping to see those levels regulate without so much maintenance. Well, the Phoebster is asking for Backyardigans, so I’m off. We are so grateful for the improvements we are seeing in her!
Thank you all for praying, ~Amey
Praying for more good days for Phoebe …..
I have been following Phoebe’s process and progress for some time. She is amazing and inspirational as a precious brave baby girl. I pray for her daily.
(Jackie Lay’s daughter)
That’s amazing, what a tough cookie Phoebe is. So many things have turned into a habit for her and she now knows how to deal with them, how comforting that must be for her!! Praying for normal sodium levels and fluids. Just made a great start to my day reading this. Hang in there mom, your doing a great job and it’s obvious that Phoebe trusts all the decisions you have made so far! We love you Phoebe Fair and will continue praying and fighting.
When as a child they are this strong and such a mighty warrior, I can only imagine the adult they will become. Great and mighty things are instore for the Phoebe. What a wonderful and powerful woman she will become. I think the “Mom” may have had something to do with this. Both, I feel, fulfill God’s ideal of what women should be. Phoebe, you are a better woman than me! May your healing continue and God is smiling on you. Blessings to everyone! Marilyn Baker
It is a marathon and you need to pace yourself. By the sounds of it you are doing fine. I am glad to hear there are improvements with Phoebe and you are learning the medical language.
Praying and praying,