Thursday, February 18, 2016

We Get to Say “Phew”!!!!!



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)