Eevie is all smiles after receiving her immunoglobulin infusion AT HOME!! We are now able to give her a tiny stick/one hour infusion in our OWN living room thanks to sub q medication. As you can see, Eevie's skin is looking much, much better. Her toenails are still recovering and she still gets bumps on her arms, legs, and face (the immunology team thinks they are tiny viruses that people with immune systems normally fight off).
Results from the flow cytometry are in. Unfortunately, we were sad to here that Eevie's tcells did not grow any. However, her B cells did grow a little bitty bit which the docs see as positive. The team wants to give Eevie 6 more weeks to try to grow t cells and more b cells. If she does not, we will be looking at a bone marrow transplant. Come on Eevie...ROAR baby girl!!
Eevie is in a great mood this morning despite her medical visits. Yesterday we were set up for home sub q administrations of immunoglobulin. Once a week, we will use numbing cream and put a small needle underneath her skin. A pump pushes the medication into her fatty tissue. Yesterday, the nurse gave her her first dose as we watched. We took pictures of her leg overnight and emailed them to immunology department monitor her reactions to the new type of infusion. They wanted to see her leg again this morning. You can see a golf ball size lump where the meds went in but it's better. We are still waiting for specific labs...sigh.
We found out that...drum roll please...her weight is up!! Finally after 6 months we are almost back to her highest weight ever (she gained about 320 grams and is 17.7 pounds)!! What a monster...ha;))
Eevie enjoyed her @Hotel Phillips bath tonight!! We are in kc to meet with her immunologist. We will be here through most of the weekend while we get set up for Sub q ivig that can be given at home so we can avoid multiple hospital transfusions. More updates to come...
Yesterday, Eevie went to the hospital for IVIG. She was only supposed to be there for four hours. Due to problems with her medication orders, she was there from 10:30 AM to 9:00 PM . Not too long considering, but longer than necessary. Eevie was a trooper but hated the IV...luckily nurse Mari (aka Mary Poppins) was there to comfort her! Thanks "Muh!" Labs were drawn and look good. We won't have new info on her lymphocyte functioning for a few more months. Keep roarin' Eevie girl!!
We are enjoying just how wonderful a simple smile is!! Eevie has been in a great mood lately. We have been monitoring her intake and output closely. She is slowly gaining weight, but it is a careful and very difficult process (she is 25 months and 17 pounds) . Daddy spent over 5 hours making her a specific blenderized diet that goes through her NG tube. Her labs came back and indicated we can restart her medication that helps kill off the cells that are haywire and causing problems with her skin and digestive system. She gets an IV infusion on Tuesday. We are still unsure if she will need a bone marrow transplant or not...we will know more in about 8 weeks.
The good/bad news is Eevie had a "normal" injury today...somehow she got her face STUCK in her dollhouse!! Not even sure how it was possible. Felt terrible...but then felt relieved she's well enough to play. We get more blood work results tomorrow. Roar on Eevs!!
Before Eevie left for CHOP we would have family dinner every Monday night and tonight we got to start that again!!!!!! (Even though it's Tuesday)! She is pushing her milk bag and Wu around in her stroller! She is super smart loves talking to her boyfriend Ellis and dancing! Happy days are here again! ❤️
Please donate whatever you can give to my precious niece, Eevie Elouise. She was born by emergency c-section November 10, 2013 in Wichita, KS and was flown by Children's Mercy Hospital in KC to be treated fo r congenital acute lymphoblastic leukemia (ALL). Congenital ALL is an extremely rare condition affecting 1 in 5,000,000 ( Only 4 million babies are born in the U.S. every year). Your support and donations are so appreciated. Brynne and Ryan need all the support they can get as this will be a long uphill battle. Eevie is 3 weeks away from her 2nd bday and is battling a mysterious illness most likely chemo induced.