An Great 6 Month Post BMT Clinic Appointment

Last Friday, we went to London for Miya's six month post BMT clinic appointment. 

Let me begin by saying, a week before the appointment, the BMT office called me and said that when Miya was in having her Hickman line removed, Norovirus (the virus that can cause vomiting and diarrhea) was present in her stool and she couldn't come out of isolation until she had three consecutive negative stool samples.  Great.  Why wasn't this caught before now??  What took them a month to notify me?  Anyway, we were in a special isolation room at the hospital because Norovirus is extremely contagious and even though she tested positive for this virus a month prior, there was no proof she wasn't carrying it anymore and precautions were taken. 

Miya was evaluated by Occupational Therapy and was found to be doing age-appropriate things.  No further follow-up is required and she will not be referred to a local Occupational Therapist.

An ECHO was scheduled, but because of the Norovirus, Miya was not able to attend and this will be rescheduled. 

The BMT doctor who saw Miya was very pleased with her post-BMT convalescence and went as far as to say that she was the best post-BMT Hurler patient she had ever treated (she is not the only doctor to say this).  We were also advised by the occupational therapist that in her two years of working at the hospital,  Miya was the only patient she had worked with who spent less than 40-60 days in hospital for a bone marrow transplant. 

Two of Miya's medications were stopped, and another one may be stopped, depending on the results of her immunity blood work that was taken on Friday. Also, her NG tube can come out providing we can coax her to drink 700-800ml of fluid a day and we can get her to take her remaining medications orally. Taking the medications orally hasn't been a problem, and between water, milk, and juice, the fluid requirements have proven to be successful over the last two days. 

Now, I'm not bragging (well, maybe a little) and I don't want to press my luck and a whole bunch of bad things happen (but I'm as prepared for that as I can be) but I think all of this is promising.  Chris and I always knew Miya was a star!!
 

My Poor Neglected Blog (Nearly 6 Months Post Transplant)

I'm sorry.  I'm sorry for neglecting you. I keep meaning to update the blog.  I really do.  But then life happens (as it does), and this poor blog gets pushed to the back burner.

So here I am, better late than never, updating you fine people on Miya.

Miya is FANTASTIC!! She is SO AWESOME!! And I'm not just saying that becasuse she's my kid, ya know.  I really mean it.

Last Thursday, Miya underwent a small surgery to remove her Hickman line!! This is a huge step in the post-BMT world.  It says "Hey!! I don't need loads of blood taken anymore!! I  don't need IV drugs anymore, or blood products!!"  This removal means so much to Miya and to our family.  This means normal baths! It means swimming when she is released from semi-isolation.  It means no more weekly dressing changes (Miya HATED them) and no more tucking lumens into clothing and making sure they were hidden well in pajamas, so little hands couldn't reach them in the middle of the night.

Watching Pingu on her iPad after coming back from surgery to remove her Hickman line

Although the hair produced from taking Ciclosporin is slowly coming out, Miya still has a lot of hair on her back, bum, shoulders, arms, and the tops of her legs.  The hair on her face and lower legs is slowly starting to thin/fall out.  

Miya is becoming more and more independent.  She doesn't want to crawl up the stairs anymore.  She wants us to hold her hands while she walks up.  She chooses her footwear and which jacket she wants to wear.  She also speaks!!  Off the top of my head, here is a list of Miya's vocabulary:

No, Yes, Yay!, Mum, Dad, Cat, Blue Car, Car (I'd like to point out that "car" is often used independently of "blue" but "blue" is never said on its own), Uh-oh, up, down, corn, I don't know, where?, airplane, nose, ding-dong, cow, shoes, two (she thinks every number after one is "two"), shhhhh (while putting a finger to her lips to indicate quiet), and Comebo (it's how she says "Columbo". So what? I like to watch Columbo!!).  That's all I can think of for now, but I know as soon as I post this, I'll think of more.

She can do the actions to "Head & Shoulders, Knees & Toes" and the actions to various other songs I've taught her.  She also likes to dance and play music. 

We have a clinic appointment at GOSH in two weeks.  At that appointment, a CD4 marker blood test will be done to determine Miya's T-Cell production.  The magic number is 300.  If Miya's T-Cell count is 300 or above, she can come out of isolation.  It generally takes 2-3 days for the results of this test to come in.  

The following is a video I made of Miya while driving in our blue car.