Phoebe woke up this morning and her face was really round and swollen, her eyes were sunken in with dark circles underneath them and she did not have a lot of energy.
Something told me to check her neck to see if any more nodes had grown or if any of the ones that are already enlarged grew any more.
My heart sunk as soon as I felt her neck. Two areas with protruding masses. And as her history has proven, what is visible is never the whole thing. Their size is always much bigger, buried into her neck.
The last time they got this big multiple nodes had fused together and she was barely eating or drinking because of the difficulty it gave her swallowing.
Phoebe is a preschool graduate!! It has been a long hard road, and many times we did not think we would see this milestone! But with the amazing special education program in our school district, Phoebe was able to attend preschool in a program that made a schedule that fit her medical and physical needs!
This is first school year that Phoebe has been able to be a student and attend from September through June!
Even when she missed the whole month of November and when she started a trial of the immunosuppressant, they brought her schedule down to one day a week. And when they went to increase her days, they did it slowly and at a pace she could handle that did not overwhelm her system!
We are so blessed to be a part of this program in our school district! It is allowing Phoebe the chance to experience things we never thought she would get the chance to!
In the fall Phoebe will start Kindergarten at her home school, and her team there is already starting to put a program and schedule in place for her that will be based off of her health, physical abilities and with complete guidance of her doctors!
#Roar #PreschoolClassOf2016 #GraduatePhoebe
It was a rough night for Phoebe. She tossed, turned, cried and whimpered in pain for hours. It also took like what seemed forever for her fever to finally break.
She continued to take ice chips and sips of water through out the night, so luckily she did not dehydrate.
This morning we went to her pediatrician. As she lay curled up on my lab in the exam room, we learned Phoebe's not just having one of her flare ups...she also has strep throat and an ear infection.
She is basically going through a giant storm, and each issue is playing a part in the other two.
She started antibiotics right after we left the office and had her second dose shortly before going to bed.
She is already starting to feel and act like her normal self again. She has also not complained of throat pain.
Please continue to keep Phoebe in your prayers as she continues to fight the infections during this flare up.
Phoebe was on the mend yesterday and this morning. She was getting a little more energy ever day, drinking more, and the swelling was going down.
Unfortunately, this evening she took a turn in the opposite direction.
Her high fever is back, she has been crying hysterically that her throat hurts and that it hurts to swallow. And she asked for "the blanket".
And because of all of this, her already enlarged nodes are even bigger.
She is taking ice chips/chunks and letting them dissolve in her mouth, and slowly chewing them.
We gave her motrin and hopefully with the ice chips and sips of cold water, she will hold up ok until we can get to her doctor tomorrow morning.
Please continue to pray for Phoebe. It absolutely breaks my heart that she continues to go through this and we don't know why.
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.