hemangioma 7 months in...

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inspired by a friend

who’s friend

found my blog on emmi’s hemangioma

useful

and inspiring

i am giving ya’ll an update!

we’ve been on the propranolol now for 7 months

and we’ve seen such a change

top pic on left 2 week after birth, top pic on right two months old and ulcerated

bottom pic on left 6 months old loving food! bottom pic right today at 9 months 

last month the base got a new dermatologist

and he was impressed

but added a new medication

{fluocinonide}

which is a topical steroid

the side effects of a steroid

are atrophy and reduce swelling

which of course is what we want this hemangioma to do

i’ve done some research on fluocinonide

and reviews are mixed on it’s effectiveness

however

it isn’t hurting her

so why not try

area measurements of the hemangioma are about the same

2x2

on average

however

it’s barely ‘swollen’

anymore

it’s almost flat against her face

the docs keep telling me to be patient

and it appears

this hemangioma is on a five year plan

but

overall the results are great

 we will continue with therapy

and

just be patient

hope those who have infants with hemangiomas continue to find hope

and inspiration

in other’s stories

love love from aviano!

stagnant yet improving?

sorry it has been awhile since i posted

but my mommy came!

and 

we enjoyed

almost a month of site seeing

we went to salzburg

and sang to the hills

celebrated the 4th of july

 went swimming

we hung around the local area

and

most importantly 

she and emerson bonded

it was an enjoyable visit!

so what is the latest with 

the 

{hemangioma treatment}?

i've been asked that a few times

we are stagnant

yet improving

 how you ask

is that possible

well the overall size hasn't changed much

it is measuring 1.5x2 on a good day

and 2x2 on a bad day 

(when she won't hold her head still)

but 

the overall clarity and skin definition is so much better

and 

it is growing hair!!

this is a good thing!

this means the skin underneath is healthy and pushing through

here is the most recent picture

so we patiently wait

for the size to decrease

but rejoice in the improvements we are seeing

changes

it has been two weeks

since i posted about 

{the hemangioma}

and 

you can read all the updates

{here}

but in the past two weeks we have seen significant changes!!!

here she is 2 weeks ago at her 3 month pic

shocked look as usual!

here is a close up of the hemangioma

the ulceration

(black area)

is still there but way smaller

and here she is a week ago

and today

no more ulceration!!!

and

it is measuring 1.5x2cm

so

.5cm smaller

the dermatologist was impressed

stating he didn't expect to see results for 6 months!

and we are only a month in

we still have a ways to go

but 

the important thing is 

we are headed in the right direction

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

 however, 

i said i was going to be honest

 and my honest reaction 

when i sat down and write this post 

was 

anger

 frustration

 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

one week down.....

here we are at the end of week one

of 

treatment for miss emerson's 

hemangioma.

this is the hemangioma at the beginning of the treatment

honestly 

i was expecting much change

since

she was only on 1/2 strength dosage

but

we did see change!!!

last week's measurements

were

2x2.5cm

and 

.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)

and

.6 cm deep

(shorter by .2 cm)

YAY!!

now we are on a full dosage of propranolol

and 

will go back to the doctor next week

for

a weight check

and 

more measurements!

she just found out she weighs a whopping 12 lbs.

she's my wide eyed beauty!

hemangioma treatment week one!!

yesterday we started treatment on

miss emmi's hemangioma

treatment for now 

will consist of 

twice a day dose of 

{propranolol}

weekly weight checks 

and 

blood sugar checks

weight checks because

the dosage is based on weight

blood sugar checks

because

 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

and

14 months

wow 

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!! 

yum! 

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

but 

she is NOT in pain

and 

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??

 

what's that on her face?!?!?: a lesson in infant dermatology

there isn't a day that goes by

that someone doesn't ask

"what's that on her face?"

a part of me wants to reply

"what on her face? i don't see anything"

then the nice person

the not rude person

wants to take the opportunity to educate

and inform

the questioning person 

of her birthmark

known as a hemangioma

hemangiomas

are birthmarks

that are more likely 

to occur in

caucasian

females

who are premature

hello emerson!

at birth they usually aren't visible

but about 2-4 weeks after birth they become apparent

which in her case

we thought it was from the tape of the ng tube

but within a week or so after that it became bigger

and a week after that even bigger

and today it's even bigger

(happy two months sweetie!!!)

but they

tell me this is normal

and that the birthmark will go away on its own

however

there are 

treatments

ranging from

beta blockers

laser surgery

and 

surgical removal

because her spot

is 

ulcerated

and

close to her eye

more than likely we will treat it 

we meet with the dermatologist

this week

to determine a treatment plan

but

her spot will

most likely

go away

with or without treatment

so there is your lesson in infant dermatology!

happy monday

and

happy 2 months to our sweet emmi!