A Heartfelt Thank You

I was shocked to find out that the girls (Donna, Cheryl and Sue and Steve H (the boy)) did a bonus chip for me last night. I've cried enough this week I wasn't expecting to do it again at 7:30 this morning, but there I was bawling like a baby (but then again so was Sue). 

My grand-daughter Myleigh is now home from the hospital and we as an entire family are slowly trying to figure what our new normal might be, what Myleigh's new normal will be to be exact.

Last week when I as TD I had just taken my grand-daughter to urgent care who then sent us to the ER, where she was immediately admitted, no five or six hour wait to be assessed, because of her new symptoms and her previous diagnosis in February of ADEM they at first thought she relapsed. Once her mother was able to be to the hospital, I left, I knew she was in safe hands and her mommy was with her, and to be honest, I knew she was sick, although I might have been in a bit of denial about how sick she really was, so I decided to carry on with my TD'ing duties. (I don't recommend this)

Within a few short hours after I left my grand-daughter at the hospital, the doctors soon discovered after talking with neurologists at BC Children's Hospital that she was more severely sick than anyone thought, Myleigh was completely blind in one eye. 

Last Saturday morning her and her mother were sent by ambulance & ferry to Vancouver. Her daddy and I arrived just after noon (no sailing wait on a long weekend) She was sedated and had a MRI and a lumbar puncture that afternoon.

Results from the MRI showed new lesions on either side of her brain which were not there along with the other lesions in the February MRI. Thanks to an amazing treatment called IVIG, she was given two -  four hour treatments and by Wednesday, Myleigh's vision has returned to about 70%, another treatment will be done in a month or so and we hope it can be restored to 100%, fingers crossed.

I don't want to say that we've been told a final diagnosis, because some auto-immune diseases present similar symptoms, although that being said, we have somewhat of an idea. 

Until they give us a final diagnosis she will need to travel by ferry from Victoria to Vancouver, to both BC Children's Hospital and to the University of BC MS Clinic, every two weeks or once a month depending on various appointments. I will either travel with my daughter and Myleigh for support or I will stay behind with their youngest who is in kindergarten.

Myleigh is experiencing all over body pain, some times her pain is in one area and sometimes it's her whole body. It varies day to day and we never know what part of her tiny body it will affect until it hits her. It's so hard for a eight year old to explain their pain, but we can see it in her face when it's starting, which is so devastating as we watch this normally active, jubilant, fearless little girl lay motionless in agony. Her blood pressure is still quite high and we are also dealing with some side effects from the multiple medications she is on.

So that is it in a nutshell, my daughter and her husband are doing as good as expected, their youngest of five and basically oblivious as well a five year old should be at this point, and me, well I am fine, yes I've cried, but I try not too, I need to show strength for my daughter and my son-in-law, at least until they figure this out. Plus Myleigh has always depended on me to be the calm one, the one who can crack a joke on a dime. (she also loved Walter for the jokes) and even if she doesn't want any cuddles, she wants to know I am a arm length away when she needs me.

All this said, Myleigh is honestly the bravest 8 year old that I know, hey, I know a lot of adults who couldn't handle what she's been dealing with so courageously.

She was so determined to leave the hospital, she was ready to check herself out if the doctors weren't going to do it, she missed her dog, her little sister, her extended family and all her friends.

She wants to go back to school, and she will, but that will be a slow transition as she tires so easy, I will be her caretaker so her parents can resume their working schedules as best they can between doctors and hospital visits.

She knows she is sick and answers won't come fast, she knows she has a new normal to figure out, and she might just figure that out before us adults.

Please continue to keep her in your thoughts and prayers and again from the bottom of my heart, thank you so very much.

Tammie or as Myleigh calls me, 

MieMie