Phoebe is eligible for the special education preschool program in our school district for her medical issues as well as her developmental delays.
Yesterday was her first day of school in this program and I have mixed feelings. The last two times we have tried preschool her system was unable to handle it. With no improvements to her health and her issues still flaring up with no warning, I am scared and nervous this attempt will be like the others.
But in true Phoebe style, we are choosing to Roar and take each day as it comes! She has an amazing team working with her at the school, that is committed to making the program fit Phoebe's needs rather than forcing Phoebe to fit the program, and amazing doctors who have given us all the notes, restrictions, guidelines and letters to keep her as safe as possible.
So here we go...ready as we will ever be to Roar at Mt Prospect School!
From Phoebe's Mom:
Phoebe's genetic snipet test that was done in December was being denied by insurance. Because of this denial and the high cost, the lab did not want to start running the full genome sequencing Phoebe needs.
We went through every level of appeal with the snipet test and last Thursday I participated in the last level of appeals...an appeal panel. Three people with no prior knowledge of the case read her whole file pertaining to this test. My participation in this panel was to state further information and reasons why this test should be covered, as well as to answer any questions the panelists might have.
Today I received the decision letter from the panel and they are approving and covering the genetic snipet test from December! We don't know how much of the test will be covered, or what our expense will be, but this is still a win!
I would like to add that we did not discuss the full genome sequencing test during this panel. We still have a few levels of appeal available to us with that test, and the panelists did not want us to lose those appeal levels by considering it with the snipet test.
Phoebe's esophagram and endoscopy biopsy results came back with no findings. Her GI doctor does not want to put her through more tests since she goes though so much already and her difficulty swallowing has not caused any serious affects. This is now another thing that is hard to explain with no definitive answer.
Phoebe has been going through testing the past ten days to see if the doctors can figure out the root of her swallowing problem. Last week she had an esophagram which gave no answers, so yesterday she had an endoscopy with biopsies. The results of the biopsies should be in the end of this week or the beginning of next.
When the genetic counselor enters Phoebe's symptoms and lab result history into a data base, quite a few genes are showing as "hits" as possible causes for all the she is going through.
Even with sending all of this detailed information to the insurance company, they have officially denied the blueprint testing that allowed the geneticist to pick 100 genes (including the ones they were getting hits on). What is it going to take for the insurance company to cover these necessary tests??
Phoebe has been having a rough time so far this summer. Her body does not handle intense temperature changes very well, so with the high humidity and heat she has been swelling a lot more, experiencing more pain and discomfort and wanting to just lounge on the couch under her blanket.
Her blanket...the one thing she always asks for when she isn't feeling well. The one thing, that as soon as you see it with her, your heart drops cause you don't know how the rest of the day is going to turn out for her.
The Green's have received a $2,000 bill for the "snipet" genetic test that was done in December on Phoebe. Insurance had initially claimed they would fully cover this test, but according to the bill they received from the lab, insurance changed their minds.
The insurance company has all of Phoebe's medical history, doctor's notes, tests and letters of necessity, but have still decided that the majority of this bill is not covered by insurance.
Apologies for my delays in between posts. I like to keep our kind and generous followers in the loop on Phoebe!!
Since insurance denied having a full genetic workup done, there was a different genetic test Phoebe's geneticist wanted to try to have done. In this test they could pick 100 genes to have tested and mapped and hopefully one of the chosen genes would give us answers to what is going on with Phoebe.
As of today, we have still not heard whether or not insurance will cover this test. With the way insurance has been, there is little hope of being able to get this necessary testing approved and covered.
We have a lot of appointments that we are going to need to make for our sweet little girl...
Phoebe's neck has quite a few large masses protruding and there is no way to tell if they are individual masses or multiple ones fused together (like last time) until we get in to her specialists and have an ultrasound.
What makes this more frustrating is that insurance has officially denied the whole genome testing that we have been waiting to have run since November. We have exhausted all of our appeals and they are not budging.
Our friend's, (Dan & Adrienne Green) 3 year old daughter, Phoebe, has been diagnosed with a rare and life-threatening genetic blood disorder. Autoimmune Lymphoproliferative Syndrome (ALPS) is an inherited disorder of the immune system. In ALPS, unusually high numbers of white blood cells called lymphocytes accumulate in the lymph nodes, liver, and spleen, which leads to gross enlargement of these organs. ALPS can cause numerous autoimmune problems such as anemia (low count of red blood cells), thrombocytopenia (low count of platelets), and neutropenia (low count of neutrophils, the most common type of white blood cell in humans). Her medical bills are skyrocketing, and it's just the beginning. Her parents will need to travel the United States for specialists at their own expense. Because ALPS is so rare, even though it is life threatening, none of the costs are covered by insurance. Please share this page and forward it to whomever you can. Together, voice by voice, Phoebe's roar is getting louder!
Here is her Medical History Blog: