What date is it again?
Feb 18 2016...is the day our family got to breathe. Take in some air and
just feel it in our lungs.
Beauty had her 6 month X-rays for scoliosis today at the
Shriners Hospital and for once in two years got some hopeful news!!!! Hubby and
I were so happy that we hugged and forgot to hug the actual patient!!! Lol.
So story is that she gets checked every 6 months. Usually
it is not good or bad news but a wait and see. She has progressed a couple of
degree…have to see what happens….if she gets to 40 degrees we will need to
consider to give her spinal fusions. You get the picture. Kinda feels like
waiting is a living hell (and I can’t even imagine for parents who’s kids
suffer from much harsher things than scoliosis)
Six months ago was not a neutral apt but a worrisome one
as she went up to 40 degrees and got
worse considerably and was borderline surgery (still unlikely as is close to
end of growth but very borderline.) Were told to wait and see again in 6 months.
Now today- 6 months later- was a scary apt but with great
news. She may have even improved a bit which is very rare in scoliosis) And she
will very likely be out of the night brace in 6 months if all continues in this
good direction (day brace dates TBD )
It’s hard to articulate how this feels. I feel so grateful
just to be lighter and living normal life even for these few hrs. Not having
something so huge hangs over my daughter’s head and heart. To leave that office
and just talk about normal things life Starbucks smoothies and breakfast sandwiches
and think about if I prefer my hair dark or blond. Freedom.
We set off after the appt to get the brace adjusted (this
is about her 5th brace (combined day and night) as she grows like a
weed!!!)
I have all sorts of supports and really a village of
people who care. Texts flood in as I send out the good news, Colleagues, Family,
and Friends. We are blessed. And Beauty? Well she doesn’t care much as has more
important things to think about –mainly the business of living the life of a 14
year old girl which I am so happy today she got to go back to school and think
about.
I allow myself only two weeks before apt and X-rays to even think about that there is even an
upcoming appt. Then I only allow myself 1 day to fret and be super super
anxious about it. That morning of apt I wear my lucky charm necklace and my mom
holds two heart rocks in her hands until she gets my call from the hospital. Savvy
strongly prays for us. Childhood wonder prays and hopes a lot too and sends
lots of texts. SK asks Catherine and Nanny (and now David) to watch over
Beauty. And wonderful colleagues send me inspiring thoughts to think of to keep
me calm
“I am releasing fear-based
intentions, and I am nurturing love-based intentions.”
“I have faith in the best
possible outcome.”
“I trust life and am open to
the outcome, and when the time comes I will know what to do as next steps.” (Trust/Optimism but with detachment to the outcome)
We went out to breakfast the three of us
after and planned out her Brace Burning party that will take place the minute
she is allowed to take brace off (maybe in 6 months!!!!) I cannot even imagine
that moment!!!! We sat there and planned out a possible trip to Florida that
she has possibly been invited to and would leave a week from Friday for March
Break!!!!!
I am just so happy that we can say PHEW.
Looks like our girl is not getting spinal fusion surgery as long as nothing
really rare and odd happens and she grows a lot. That being said doctor said
that her bones and skeleton are unlikely to change at this point and that the body
she has not is likely the body she will stay with. If this is the case lucky
lucky lucky girl (I would seriously give anything to have that body)
She deserves every ounce of appreciation,
compliments and recognition. The kid has been through a lot and continues to go
through a lot.
We loved seeing her shy( barely there smile)
when the surgeon told her the news:
We walked out and we asked her how she
felt?
“I like my surgeon” she said (then she just happily chatted
about anything else except scoliosis)
Music to my ears.
YesJ)) I do tooJ)
What date is it again?
Feb 18 2016...is the day our family got to breathe. Take in some air and
just feel it in our lungs.
Beauty had her 6 month X-rays for scoliosis today at the
Shriners Hospital and for once in two years got some hopeful news!!!! Hubby and
I were so happy that we hugged and forgot to hug the actual patient!!! Lol.
So story is that she gets checked every 6 months. Usually
it is not good or bad news but a wait and see. She has progressed a couple of
degree…have to see what happens….if she gets to 40 degrees we will need to
consider to give her spinal fusions. You get the picture. Kinda feels like
waiting is a living hell (and I can’t even imagine for parents who’s kids
suffer from much harsher things than scoliosis)
Six months ago was not a neutral apt but a worrisome one
as she went up to 40 degrees and got
worse considerably and was borderline surgery (still unlikely as is close to
end of growth but very borderline.) Were told to wait and see again in 6 months.
Now today- 6 months later- was a scary apt but with great
news. She may have even improved a bit which is very rare in scoliosis) And she
will very likely be out of the night brace in 6 months if all continues in this
good direction (day brace dates TBD )
It’s hard to articulate how this feels. I feel so grateful
just to be lighter and living normal life even for these few hrs. Not having
something so huge hangs over my daughter’s head and heart. To leave that office
and just talk about normal things life Starbucks smoothies and breakfast sandwiches
and think about if I prefer my hair dark or blond. Freedom.
We set off after the appt to get the brace adjusted (this
is about her 5th brace (combined day and night) as she grows like a
weed!!!)
I have all sorts of supports and really a village of
people who care. Texts flood in as I send out the good news, Colleagues, Family,
and Friends. We are blessed. And Beauty? Well she doesn’t care much as has more
important things to think about –mainly the business of living the life of a 14
year old girl which I am so happy today she got to go back to school and think
about.
I allow myself only two weeks before apt and X-rays to even think about that there is even an
upcoming appt. Then I only allow myself 1 day to fret and be super super
anxious about it. That morning of apt I wear my lucky charm necklace and my mom
holds two heart rocks in her hands until she gets my call from the hospital. Savvy
strongly prays for us. Childhood wonder prays and hopes a lot too and sends
lots of texts. SK asks Catherine and Nanny (and now David) to watch over
Beauty. And wonderful colleagues send me inspiring thoughts to think of to keep
me calm
“I am releasing fear-based
intentions, and I am nurturing love-based intentions.”
“I have faith in the best
possible outcome.”
“I trust life and am open to
the outcome, and when the time comes I will know what to do as next steps.” (Trust/Optimism but with detachment to the outcome)
We went out to breakfast the three of us
after and planned out her Brace Burning party that will take place the minute
she is allowed to take brace off (maybe in 6 months!!!!) I cannot even imagine
that moment!!!! We sat there and planned out a possible trip to Florida that
she has possibly been invited to and would leave a week from Friday for March
Break!!!!!
I am just so happy that we can say PHEW.
Looks like our girl is not getting spinal fusion surgery as long as nothing
really rare and odd happens and she grows a lot. That being said doctor said
that her bones and skeleton are unlikely to change at this point and that the body
she has not is likely the body she will stay with. If this is the case lucky
lucky lucky girl (I would seriously give anything to have that body)
She deserves every ounce of appreciation,
compliments and recognition. The kid has been through a lot and continues to go
through a lot.
We loved seeing her shy( barely there smile)
when the surgeon told her the news:
We walked out and we asked her how she
felt?
“I like my surgeon” she said (then she just happily chatted
about anything else except scoliosis)
Music to my ears.
YesJ)) I do too Meh-mehJ)
