We had our follow up with Dr. Waseem today and he had also consulted with another doctor about Lilly's case. Looks like we are in for more test... ugh!!
They took blood, as always, Lilly was brave and didn't cry..they are going to be testing her every month for the next few months looking for answers and monitoring her High Inflammation levels. After the blood work Dr. Waseem brought in a few gifts for Lilly, a book, puzzle and crayons! He is such a good doctor oh and the nurses gave Lilly juice and cookies, they all treat us so well at Children's Specialty Center of NV!
The X-ray of her stomach shows she still has a blockage, we are giving her stool softener to try and get this cleared out....
The ultrasound of her neck shows she now has 5 lumps, 3 on left side of her neck and 2 on the right side, the largest one is 1.7cm and that is the original lump found on the left side back in November of 2013 (don't know the original size, going to check my records and see if I have it), she will now be getting a biopsy.
We are going to see the Surgeon on June 4th to speak with him/her (?) about setting up to have Lilly's Biopsy done, we do not know at this time if she will have the Lymph node removed for the biopsy or if they will do a fine needed aspiration. These are things we will talk about with him/her on the day of the appointment. I will let you all know her surgery date.
Dr. Waseem also wants to have Lilly seen by a Neurologist to have her assessed for Muscle Disease or Muscle Weakness. That is set for July, more info on that as it comes.
We received our referral for Lilly's Physical Therapist, I put a call in to them today and once she has her evaluation we will start therapy.
We are to start filming Lilly on her bad days, this is because the Doctor would like to see how she is at her worst which normally happens in the evening and middle of the night. Its funny because we hear it all the time, oh Lilly looks great, she looks so healthy and fine, how could there be anything wrong with her, well we don't take her out when she is in pain... So most people don't see her crying in pain, tossing and turning all night cause her legs are hurting, laying on the sofa cause she doesn't have the energy to move and as Lilly put it "Her legs are tired". They don't hear her complain about tummy aches and sores in her mouth or the itchy rash on her thigh, They don't see a lot!
Ok so I will keep y'all updates as things progress... Thanks for following!
Lilly after her blood test, she loves the pink with purple heart bandage!
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