Thursday, May 17, 2012

she's more than the spot on her face

today we had another hemangioma appointment
and as excited as I was to post about her progress
 a part of me was very annoyed. 
 more than I would like to admit people ask about her spot
 how's it doing 
how big is it now 
and so on..... 
while I appreciate the concern
 a part of me wants to yell.... 
"there is more to her than the spot!!" 
we've had a rough week filled with appointments
 that have all turned out fine 
so a part of my reaction could be from high level of anxiety 
based around these appointments with many specialist
i said i was going to be honest
 and my honest reaction 
when i sat down and write this post 
 and sadness
 my daughter is more than the spot on her face 
she's starting to coo and laugh 
 she's fussy at night 
which as much as I hate these moments 
they are her 
and i love that
 she's getting into a routine
 which I am thankful for
 so today instead if posting specifics about her face
 because frankly i am tired talking about it
 i am simply going to post
 that we are so thankful for everyone's concern
 the hemangioma is still there,
 it's improving, 
and she is as wonderful as ever

Thursday, May 10, 2012

one week down.....

here we are at the end of week one
treatment for miss emerson's 
this is the hemangioma at the beginning of the treatment
i was expecting much change
she was only on 1/2 strength dosage
we did see change!!!
last week's measurements
.8cm deep
this week 
the hemangioma looks like this

changes we've noticed
1) it looks more defined
2) the scabbing is starting to come off
3)less spidering
and the measurements are...
(drum roll please!)
2x2.2 cm
(shrunk .3 cm)
.6 cm deep
(shorter by .2 cm)
now we are on a full dosage of propranolol
will go back to the doctor next week
a weight check
more measurements!

she just found out she weighs a whopping 12 lbs.
she's my wide eyed beauty!

Friday, May 4, 2012

hemangioma treatment week one!!

yesterday we started treatment on
miss emmi's hemangioma
treatment for now 
will consist of 
twice a day dose of 
weekly weight checks 
blood sugar checks
weight checks because
the dosage is based on weight
blood sugar checks
 a major side effect is low blood sugar
which is a big no no in an infant
when can we expect to see results???
between 3 weeks
14 months
that's a time frame
already though 
after 3 treatments
we've seen some minor changes
one being the color of the hemangioma
the second 
being less spidering around the hemangioma
so i figure we can track the changes together.
here we are at week one
it looks painful
but it isn't
 the medicine made specially for her
they say it's cherry flavor!! 
and a quick review of the growth of her hemangioma
here she is at one month
it's still flat here and we were still under the impression 
it was from the tape used on the ng tube
and here is two months
what a change!!!
but that is very characteristic of an hemangioma
they just bloom over night practically
so weekly we will watch it shrink
and notice the changes together
she is NOT in pain
we are very optimistic that it will heal quickly 
and with minimal scarring!
looking forward to next week's pictures

measurements for this week are 2x2.5 cm and 1 cm deep!
any wages on next week's measurements??