Sunday, October 14, 2018
Wednesday, April 18, 2018
One year ago, was HANDS DOWN, the worst day of my life. Followed by a lot of really, REALLY hard days. Jake and I took Vivi for a MRI with sedation because she had a stiff neck for a couple weeks. Actually, by this actual day, the stiffness resolved and we had our kid back. But because our Pediatrician worked so hard to get us in at Children's, we decided to follow through. Jake almost didn't go. Jesus, what would I have done if I didn't have him there?
We joked and laughed and Snapchatted to pass time. We even thanked God we weren't in the same boat at "those" parents walking the halls. We "just don't know HOW they do it..". (Fight or flight mode is the answer.. you can't run away from your two year old going through Hell, so.. the other choice is to Fight).
After a surprising admission, from what was supposed to be a quick morning, we saw about 15-20 doctors within.. a half hour. Oh, shit. But I'll never forget the well dressed man who came in with his fancy briefcase. He was a neurosurgeon but I could've cared less. He was standing my girl up to assess her. "You freaking dumbass, she JUST had anesthesia.. of COURSE, she is wobbly." (All in my head, of course, because I either word vomit when I'm stressed or go silent... there was a lot of silence) After physically assessing Viv, he took me over to the computer screen. The internal medicine doctor told us this was probably an infection (have you ever prayed for Meningitis? Cuz I have...)
The neurosurgeon then told me the worst thing I could have imagined...
"This is not an infection. This is a tumor. A very large tumor that has been growing for a very long time."
Vomit. Pit in stomach. Physical agony. Blackout. And then, I remember looking at the nurse. I felt awful for her. Kind of funny now. But she was just trying to do her admission questions when this man comes in and drops a bomb on us. She couldn't leave now. She had to stand there and watch a nightmare play out. I think it's so funny that I focused on that. You just never know how you'll deal.
Somehow I pieced it together. A tumor.. running all the way from my kids neck to almost the bottom of her back. W.T.F. The following day, I would find out it was IN THE MIDDLE of her spinal cord. I didn't catch that day one because.. blackout. The neurosurgeon told me to Google the possible tumors. I couldn't. I didn't. I get it now. It was a lot, and he wanted me to be ready with questions for the next day when he explained the EFFING AWFUL surgery details. But in typical Ashley form, I didn't listen to anyone. Jake leapt into action quicker than I did. It took a long time for our roles to flip. But they did, a few times.
A 3 year old, a 2 year old, a 6 month old and a large stupid effing tumor to dominate.
And dominate, we did. 👊💪
One year out from diagnosis day and it's hard to believe it was only a year ago. I feel like I've lived 5 lifetimes this year.
I'll probably blog a little more to get me through the next few weeks. It's such a happy ending but it's so hard to relive it.
We joked and laughed and Snapchatted to pass time. We even thanked God we weren't in the same boat at "those" parents walking the halls. We "just don't know HOW they do it..". (Fight or flight mode is the answer.. you can't run away from your two year old going through Hell, so.. the other choice is to Fight).
After a surprising admission, from what was supposed to be a quick morning, we saw about 15-20 doctors within.. a half hour. Oh, shit. But I'll never forget the well dressed man who came in with his fancy briefcase. He was a neurosurgeon but I could've cared less. He was standing my girl up to assess her. "You freaking dumbass, she JUST had anesthesia.. of COURSE, she is wobbly." (All in my head, of course, because I either word vomit when I'm stressed or go silent... there was a lot of silence) After physically assessing Viv, he took me over to the computer screen. The internal medicine doctor told us this was probably an infection (have you ever prayed for Meningitis? Cuz I have...)
The neurosurgeon then told me the worst thing I could have imagined...
"This is not an infection. This is a tumor. A very large tumor that has been growing for a very long time."
Vomit. Pit in stomach. Physical agony. Blackout. And then, I remember looking at the nurse. I felt awful for her. Kind of funny now. But she was just trying to do her admission questions when this man comes in and drops a bomb on us. She couldn't leave now. She had to stand there and watch a nightmare play out. I think it's so funny that I focused on that. You just never know how you'll deal.
Somehow I pieced it together. A tumor.. running all the way from my kids neck to almost the bottom of her back. W.T.F. The following day, I would find out it was IN THE MIDDLE of her spinal cord. I didn't catch that day one because.. blackout. The neurosurgeon told me to Google the possible tumors. I couldn't. I didn't. I get it now. It was a lot, and he wanted me to be ready with questions for the next day when he explained the EFFING AWFUL surgery details. But in typical Ashley form, I didn't listen to anyone. Jake leapt into action quicker than I did. It took a long time for our roles to flip. But they did, a few times.
A 3 year old, a 2 year old, a 6 month old and a large stupid effing tumor to dominate.
And dominate, we did. 👊💪
One year out from diagnosis day and it's hard to believe it was only a year ago. I feel like I've lived 5 lifetimes this year.
I'll probably blog a little more to get me through the next few weeks. It's such a happy ending but it's so hard to relive it.
Thursday, January 11, 2018
UPDATE from ER Visit
I've had so many people reach out about my Vivian. It is amazing how many hearts she has touched but I can barely make all the official phone calls.. soooo
Here is your update on my sweet baby:
She's perfect. And sweet. And has no idea she is making her mom a crazy person.
You know when the doctor says "Watch for "xyz". Well, now imagine it is your baby.. and multiply it times a million (cuz I'm crazy).
They told me to "watch her bowel and bladder habits". So, I did. Like a neurotic hawk, I kept an eye on it.
"Do you need to pee? Do you need to poop? Jake, when did you change her diaper last? Did your parents change it? Was it normal? Did it smell? Did it look like it hurt her? Viv, does your belly hurt? Your back? Does it feel funny *down there*?"
Thank God, Alyssa (daycare) watches them, knows I'm crazy and brought it to my attention things were't normal.
So, after keeping an eye on it.. I took her to the ER.
For the most part, things were normal. Her kidneys are good (which is what I stress about the most... I want NO long term side effects from this).. no UTI.. she has reflux and the immediate ultrasound showed urine backing up to her kidneys (cue breakdown)... but the official ultrasound looked OK.
Urology is still giving me time to strengthen her legs in hopes it will strengthen the nerves effecting her bladder. If not, in March, catheterization begins. Because, basically her bladder squeezes, so does her "sphincter", increasing the pressure in her bladder.. and because she has reflux, it shoots urine back towards the kidneys. If her kidneys become damaged, the only thing we can do is a transplant or dialysis. No and no. So, they would put her on a medication to decrease the pressures buuut she couldn't pee on her own. Life changing, yes. Buuuut... it would save her kidneys and could be short term (a year, maybe?). And that would have no long term effects if it works. Do I want that to be the answer? No. NO! Remember guys, I want my baby to be untouched from that stupid effing tumor. I just want this nightmare to be OVER. Why is it dragging on and on and on...
Neurosurgery is concerned.. which has me concerned.
Why did she start retaining urine over the weekend? The only thing that changed is coming out of her brace.
Xray looks good. MRI next week to check.
I hate that his mind goes there. Better safe than sorry.. but... ugh.
So.. my options appear to be... cath my kid, put rods/pins in my kid or there be some kid of mass that's causing issues (unlikely)...
I'll take option D. God's got this. He just hasn't finished His miracle yet.
Here is your update on my sweet baby:
She's perfect. And sweet. And has no idea she is making her mom a crazy person.
You know when the doctor says "Watch for "xyz". Well, now imagine it is your baby.. and multiply it times a million (cuz I'm crazy).
They told me to "watch her bowel and bladder habits". So, I did. Like a neurotic hawk, I kept an eye on it.
"Do you need to pee? Do you need to poop? Jake, when did you change her diaper last? Did your parents change it? Was it normal? Did it smell? Did it look like it hurt her? Viv, does your belly hurt? Your back? Does it feel funny *down there*?"
Thank God, Alyssa (daycare) watches them, knows I'm crazy and brought it to my attention things were't normal.
So, after keeping an eye on it.. I took her to the ER.
For the most part, things were normal. Her kidneys are good (which is what I stress about the most... I want NO long term side effects from this).. no UTI.. she has reflux and the immediate ultrasound showed urine backing up to her kidneys (cue breakdown)... but the official ultrasound looked OK.
Urology is still giving me time to strengthen her legs in hopes it will strengthen the nerves effecting her bladder. If not, in March, catheterization begins. Because, basically her bladder squeezes, so does her "sphincter", increasing the pressure in her bladder.. and because she has reflux, it shoots urine back towards the kidneys. If her kidneys become damaged, the only thing we can do is a transplant or dialysis. No and no. So, they would put her on a medication to decrease the pressures buuut she couldn't pee on her own. Life changing, yes. Buuuut... it would save her kidneys and could be short term (a year, maybe?). And that would have no long term effects if it works. Do I want that to be the answer? No. NO! Remember guys, I want my baby to be untouched from that stupid effing tumor. I just want this nightmare to be OVER. Why is it dragging on and on and on...
Neurosurgery is concerned.. which has me concerned.
Why did she start retaining urine over the weekend? The only thing that changed is coming out of her brace.
Xray looks good. MRI next week to check.
I hate that his mind goes there. Better safe than sorry.. but... ugh.
So.. my options appear to be... cath my kid, put rods/pins in my kid or there be some kid of mass that's causing issues (unlikely)...
I'll take option D. God's got this. He just hasn't finished His miracle yet.
Sunday, December 31, 2017
The Year of the Tumor
2017 was... hard.
The diagnosis of a 17 level spinal tumor was.. hard. The surgery was.. hard. The hospital stay was hard. Rehabbing my sweet 2 year old was terrifying. Balancing the needs/wants of my 4 favorite people (3 of them being 3 and under) while being separated by an hour most days was hard. Watching my sweet baby become a terrified mean child in the hospital was heart breaking. Seeing the exhaustion in my husband's eyes, dealing with things he should never have to deal with was tough. Asking my mom for more help than I would ever dream of asking for was painful. Being a nurse, but not having any idea how to help my child.. was terrible.
But, I expected all of that. While I sat at Dayton Children's back in April, receiving the news about my baby, I KNEW hard was coming. I heard "tumor" and I KNEW my life was about to get hard. I knew we would all hear, see and deal with things we never want to deal with. I knew it.
At the diagnoses, our people RALLIED around us. People I didn't even know were our people.... maybe they didn't even know they were our people... but they saw us in need and supported us. We were overwhelmed. If you know me personally, you know I don't ask for help. I'm what they call.. stubborn. ;-) Friends, family and strangers gave us emotional and physical support, shoulders to cry on and distractions.
But once it was all "over", life goes back to normal... right??
I didn't plan for the "after". Thank GOD, there IS an after. I guess there is always an "after", but this is a GOOD "after". I guess I wasn't prepared for how to move on after. The anxiety riddles me, especially close to follow up appointments. I am a totally different, sad, frustrated, teary, anxious person close to appointments/tests. I haven't figured out how to move on, without letting the past 9 months control me. No one prepared us for how hard it would to overcome. Sometimes I feel like I'm living on borrowed time, like I can't exhale because the second I do.. something bad is going to knock the breath out of me again.
At midnight tonight, it's going to be magical. I am so ready to close this chapter and open a new one in 2018. I'm ready to take the new perspective I've learned on life and really utilize it. It is silly how amazing our outcome was and how down I get. Hello?! Does that even make sense?! No! Get it together, Mama!
I know I am lucky. I know my girl is a miracle. I know my family is going to ROCK 2018. I know my almost THREE year old had some stupid ass tumor that is never coming back.
Some awesome things came out of 2017. We bought an amazing house. Jake received a promotion. We both love our jobs! Our kids are the happiest kids ever. And our family/friends have proven themselves time and time again to be the world's greatest. And my kid, the one that had the surgery that could have left her paralyzed or worse.. yeah, she's RUNNING around, perfectly normal. We are BLESSED!!!
Onward and upward friends. Happy New Years! Thank you for being apart of the lowest of lows and the highest of highs this year.
“I am the LORD, the God of all mankind. Is anything too hard for me?"
The diagnosis of a 17 level spinal tumor was.. hard. The surgery was.. hard. The hospital stay was hard. Rehabbing my sweet 2 year old was terrifying. Balancing the needs/wants of my 4 favorite people (3 of them being 3 and under) while being separated by an hour most days was hard. Watching my sweet baby become a terrified mean child in the hospital was heart breaking. Seeing the exhaustion in my husband's eyes, dealing with things he should never have to deal with was tough. Asking my mom for more help than I would ever dream of asking for was painful. Being a nurse, but not having any idea how to help my child.. was terrible.
But, I expected all of that. While I sat at Dayton Children's back in April, receiving the news about my baby, I KNEW hard was coming. I heard "tumor" and I KNEW my life was about to get hard. I knew we would all hear, see and deal with things we never want to deal with. I knew it.
At the diagnoses, our people RALLIED around us. People I didn't even know were our people.... maybe they didn't even know they were our people... but they saw us in need and supported us. We were overwhelmed. If you know me personally, you know I don't ask for help. I'm what they call.. stubborn. ;-) Friends, family and strangers gave us emotional and physical support, shoulders to cry on and distractions.
But once it was all "over", life goes back to normal... right??
I didn't plan for the "after". Thank GOD, there IS an after. I guess there is always an "after", but this is a GOOD "after". I guess I wasn't prepared for how to move on after. The anxiety riddles me, especially close to follow up appointments. I am a totally different, sad, frustrated, teary, anxious person close to appointments/tests. I haven't figured out how to move on, without letting the past 9 months control me. No one prepared us for how hard it would to overcome. Sometimes I feel like I'm living on borrowed time, like I can't exhale because the second I do.. something bad is going to knock the breath out of me again.
At midnight tonight, it's going to be magical. I am so ready to close this chapter and open a new one in 2018. I'm ready to take the new perspective I've learned on life and really utilize it. It is silly how amazing our outcome was and how down I get. Hello?! Does that even make sense?! No! Get it together, Mama!
I know I am lucky. I know my girl is a miracle. I know my family is going to ROCK 2018. I know my almost THREE year old had some stupid ass tumor that is never coming back.
Some awesome things came out of 2017. We bought an amazing house. Jake received a promotion. We both love our jobs! Our kids are the happiest kids ever. And our family/friends have proven themselves time and time again to be the world's greatest. And my kid, the one that had the surgery that could have left her paralyzed or worse.. yeah, she's RUNNING around, perfectly normal. We are BLESSED!!!
Onward and upward friends. Happy New Years! Thank you for being apart of the lowest of lows and the highest of highs this year.
“I am the LORD, the God of all mankind. Is anything too hard for me?"
Thursday, August 10, 2017
3 Months Post Op
It has been 3 months since the best day of my life. Yup, I said it. May 11, 2017 was the best day of my life. It was the day I found out my baby wouldn't be fighting for her life against cancer. The 3 weeks leading up to that day were some of the worst days of my life. The days after that were hard.. some VERY hard (May 12th going into the 13th was the HARDEST hospital day by far).. but not the worst. Anything is better than cancer, right? Even our mystery beast is better than cancer.
May 11 was Vivi's big surgery. The day they sliced open her back from C2 down to L3, they cut through all her muscle, opened up her vertebrae, cut through her spinal cord and took out a massive tumor that we had seen on an MRI on April 18th, 2017 (the WORST day of my life). They put sensors all over my baby during the surgery to make sure they didn't lose any function in her body during surgery.
At the end of surgery, we knew it wasn't cancer and she didn't lose any mobility during surgery. See?? BEST DAY EVER. Recovery from this surgery hasn't been easy but I can't imagine watching my baby struggle to move again all while knowing we still had to battle for her life. I have said it probably 8434587693 times, I'm so glad the worst part of all of this was the recovery from surgery. Our outlook is not grim for our girl. She's a miracle. Vivian Leigh is my miracle child.
45 days in the hospital was hard. HARD. HARD. HARD. Some days were harder than others. My family was broken for a month and a half. Vivian was in a bad mood for a month and a half straight and we had to be within 10 feet of that moody child for a month and a half straight. And try to make her do things like eat/drink when nothing tastes good.. walk when it hurts.. use her right arm when it had no movement.. go under anesthesia for many, MANY tests.. wear a brace that rubbed her wound wide open.. multiple lab draws and IV sticks.. Lordy.. it was hard. It was exhausting. She handled things the best way a 2 year old who has no control over her body could.
Once they finally discharged my girl home, who could barely walk at the time without a ton of assistance and wasn't eating at all.. she progressed in strides. Within a week, she was walking well with a walker. Within a month, she was walking decent without the walk. And now? 6 weeks after discharge, she is pretty much running around eating like a two year old (which.. isn't super well, but we supplement with pediasure to make sure she is getting strong..)
Currently, we are working on the stairs with her. She does decent when she leads with her right. So, right now we are focused on that to make sure she can safely go up and down the stairs. However, if she leads with her left foot.. she is very unbalanced and unsafe by herself. It's strange because her right leg was the weaker one, but now it's her left. She'll get there. Her feet need a little work. It's awesome that she can walk, dance, shake it, etc. But, eventually, the way she walks, is going to start to wear down parts of her body. So while I'm extremely over the moon with our progress, I know this kid is going to require therapy for awhile and I'm going to have to really educate myself on the mechanics of her body. What we do now really will prevent future discomfort and surgeries.
She continues to have her back brace on. She will until at least September 15th. It doesn't bother her at all. Vivi actually asks to put it on and says "MOM! I love my brace!". It would be awful if she didn't. Lucky us!
Last week, we had a scare. I felt her neck and there was a bulge. She had no pain, no tingling.. but in that moment.. I almost lost it (okay, I did.. right, Mom??). The brace is supposed to keep her aligned and hopefully prevent her from having further surgery. And when I felt that bulge, I just instantly felt like our progress was for nothing. It felt defeating.
However, I made an appointment and was finally able to SEE the x-rays side to side. The one from in the hospital and the most recent one and.. she looks SUPER aligned. She looks AWESOME! I'm pumped. Dr. Mangano was out of town, so I saw one of the nurse practitioners and she thinks the bulge we are feeling is the bone fragments that he reinforced her spine with. The bulge is likely from that bone hardening and he had really reinforced that particular area because that was the area most likely to become unstable. Makes total sense. I really REALLY needed that. I really needed to see the xray to see tangible evidence that we are doing the right things.
There was a tiny area that concerned myself (and the nurse practitioner). There was a translucent area on her spine that was not talked about by the radiologist and the NP said she relies a lot on the radiologist. However, it was also on the previous xray.. which I know was seen by Dr. Mangano.. so if it was concerning, he would've said something. And it looks the exact same from xray to xray.. so while it made me pucker a little.. I feel okay about it.
Overall, we are doing awesome. Bryn and Vivian are the absolute best buddies. I'm so proud of how well Bryn treats her sister. Aubrey is officially at a stage where I call her a "monster" pretty frequently. Life is hard, but not much harder than it would be having 3 girls 3 and under.. I think our life is just supposed to be hard at this point. Haha! We just have a tad more on our plate than usual.
Just to be extra real for a second, I am TOTALLY over the summer. I've always loved Fall, but this year I'm extra looking forward to it. These nice days get me in a funk. Days like today.. beautiful, sunny days.. I should have my kids at the pool. Or splash pad. Or zoo. We should be doing all the fun things summer has to offer. We should've been in Charleston enjoying the summer week with our family. But it's just too hard right now. And I can't stand the thought of Vivian getting an infection in her back. This summer bums me out. So, I'm over it. I think the Fall will be better because I won't worry about Vivi's back so much. The outdoor activities are less physical. And Vivian won't be so hot in her brace. It'll just be.. better. And if it's not better, feel free to bring me a pumpkin spice latte daily and a couple comfy sweatshirts.. and I might pout a little less. Haha!
But I do need to be thankful everything happened when it did. My kids have no idea what their missing out on and are totally happy staying at home. In a couple years, Vivian and Bryn would know the summer is all about parks and pools.
Shew! I feel lighter! Pout session done. Back to being thankful for all we've been through and how my girl came out on top. I'm so proud of that little stubborn thing.
Sometimes I just have to remind myself.. we've come so far. In the above picture, it took everything to get that girl on the table, strap her in and tilt her up to standing position. She had cried herself to sleep. Scared? Pain? I'm not sure.. but I do it was Hell. Goodness, we've come so far
Look how awesome her back looks now!!!!
A couple times this summer, I've taken just Vivian for about an hour each time in between appointments at Cincy. Love that girl!
XoXo
The Millers
May 11 was Vivi's big surgery. The day they sliced open her back from C2 down to L3, they cut through all her muscle, opened up her vertebrae, cut through her spinal cord and took out a massive tumor that we had seen on an MRI on April 18th, 2017 (the WORST day of my life). They put sensors all over my baby during the surgery to make sure they didn't lose any function in her body during surgery.
At the end of surgery, we knew it wasn't cancer and she didn't lose any mobility during surgery. See?? BEST DAY EVER. Recovery from this surgery hasn't been easy but I can't imagine watching my baby struggle to move again all while knowing we still had to battle for her life. I have said it probably 8434587693 times, I'm so glad the worst part of all of this was the recovery from surgery. Our outlook is not grim for our girl. She's a miracle. Vivian Leigh is my miracle child.
45 days in the hospital was hard. HARD. HARD. HARD. Some days were harder than others. My family was broken for a month and a half. Vivian was in a bad mood for a month and a half straight and we had to be within 10 feet of that moody child for a month and a half straight. And try to make her do things like eat/drink when nothing tastes good.. walk when it hurts.. use her right arm when it had no movement.. go under anesthesia for many, MANY tests.. wear a brace that rubbed her wound wide open.. multiple lab draws and IV sticks.. Lordy.. it was hard. It was exhausting. She handled things the best way a 2 year old who has no control over her body could.
Once they finally discharged my girl home, who could barely walk at the time without a ton of assistance and wasn't eating at all.. she progressed in strides. Within a week, she was walking well with a walker. Within a month, she was walking decent without the walk. And now? 6 weeks after discharge, she is pretty much running around eating like a two year old (which.. isn't super well, but we supplement with pediasure to make sure she is getting strong..)
Currently, we are working on the stairs with her. She does decent when she leads with her right. So, right now we are focused on that to make sure she can safely go up and down the stairs. However, if she leads with her left foot.. she is very unbalanced and unsafe by herself. It's strange because her right leg was the weaker one, but now it's her left. She'll get there. Her feet need a little work. It's awesome that she can walk, dance, shake it, etc. But, eventually, the way she walks, is going to start to wear down parts of her body. So while I'm extremely over the moon with our progress, I know this kid is going to require therapy for awhile and I'm going to have to really educate myself on the mechanics of her body. What we do now really will prevent future discomfort and surgeries.
She continues to have her back brace on. She will until at least September 15th. It doesn't bother her at all. Vivi actually asks to put it on and says "MOM! I love my brace!". It would be awful if she didn't. Lucky us!
Last week, we had a scare. I felt her neck and there was a bulge. She had no pain, no tingling.. but in that moment.. I almost lost it (okay, I did.. right, Mom??). The brace is supposed to keep her aligned and hopefully prevent her from having further surgery. And when I felt that bulge, I just instantly felt like our progress was for nothing. It felt defeating.
However, I made an appointment and was finally able to SEE the x-rays side to side. The one from in the hospital and the most recent one and.. she looks SUPER aligned. She looks AWESOME! I'm pumped. Dr. Mangano was out of town, so I saw one of the nurse practitioners and she thinks the bulge we are feeling is the bone fragments that he reinforced her spine with. The bulge is likely from that bone hardening and he had really reinforced that particular area because that was the area most likely to become unstable. Makes total sense. I really REALLY needed that. I really needed to see the xray to see tangible evidence that we are doing the right things.
There was a tiny area that concerned myself (and the nurse practitioner). There was a translucent area on her spine that was not talked about by the radiologist and the NP said she relies a lot on the radiologist. However, it was also on the previous xray.. which I know was seen by Dr. Mangano.. so if it was concerning, he would've said something. And it looks the exact same from xray to xray.. so while it made me pucker a little.. I feel okay about it.
Overall, we are doing awesome. Bryn and Vivian are the absolute best buddies. I'm so proud of how well Bryn treats her sister. Aubrey is officially at a stage where I call her a "monster" pretty frequently. Life is hard, but not much harder than it would be having 3 girls 3 and under.. I think our life is just supposed to be hard at this point. Haha! We just have a tad more on our plate than usual.
Just to be extra real for a second, I am TOTALLY over the summer. I've always loved Fall, but this year I'm extra looking forward to it. These nice days get me in a funk. Days like today.. beautiful, sunny days.. I should have my kids at the pool. Or splash pad. Or zoo. We should be doing all the fun things summer has to offer. We should've been in Charleston enjoying the summer week with our family. But it's just too hard right now. And I can't stand the thought of Vivian getting an infection in her back. This summer bums me out. So, I'm over it. I think the Fall will be better because I won't worry about Vivi's back so much. The outdoor activities are less physical. And Vivian won't be so hot in her brace. It'll just be.. better. And if it's not better, feel free to bring me a pumpkin spice latte daily and a couple comfy sweatshirts.. and I might pout a little less. Haha!
But I do need to be thankful everything happened when it did. My kids have no idea what their missing out on and are totally happy staying at home. In a couple years, Vivian and Bryn would know the summer is all about parks and pools.
Shew! I feel lighter! Pout session done. Back to being thankful for all we've been through and how my girl came out on top. I'm so proud of that little stubborn thing.
Look how awesome her back looks now!!!!
XoXo
The Millers
Wednesday, July 26, 2017
Home Life
When people used to ask me about having kids, I would always say "It is HARD.. and AWESOME". That's about how it's been since Vivian has gotten home from the hospital. I think it's harder physically on us than when she was in the hospital, but it's just... better. I pinch myself every now and then seeing her in our home. It felt like we were never going to get to come home, and now it feels like the hospital was a past life... a very terrible past life.
Leaving the hospital was a little messy. It took us awhile to get her supplies for her tube feeds. Follow up appointments were messy. And then, she started having spasms. And it took a few days to get her pain under control. Those few days were absolute hell. It was hard on everyone. Luckily, Jake and I were both off and were able to get things set up and take the time we needed to get her settled and figure out our new normal. She hasn't had spasms in a couple weeks and we weaned her off all of her medications. Hallelujah.
Initially, she was sleeping in her room in her own bed. She honestly did really well with it. The problem was that she wanted the brace off so early in the evening and couldn't just spend time relaxing. She has to lie flat if she isn't in the brace. No sitting, no pillows, nothing.. just flat on her back. It wasn't comfortable to sit in the brace, so she really couldn't watch tv. So we put the futon mattress in our front room and that's her new bedroom for now. It has a tv so she can comfortably relax watching tv at the end of the day. When it's "bedtime", we just turn off the tv and most of the time she is totally okay with closing her eyes and going to sleep. It's working out much better. I love that she has her own safe space to relax and doesn't have to sit uncomfortably on the couch in her brace to watch tv. It really has been a perfect spot for her.
She has been home for a month and she has progressed immensely. When we left the hospital, she was walking with the walker.. very.. very.. slow. I had actually ordered a stool for my house to roll around on behind her because walking with her was so hard on my back. Fast forward to today and she is running around my first floor with little supervision. She is able to bend to pick things up on her own and can walk up the stairs with our assistance. Vivi thinks she is big time and started crawling up the stairs without me yesterday. Talk about a heart attack! Can you imagine if she fell? Ahhh! It's cool that she can do it but.. not yet, baby girl. She has fallen a few times and it scares her, but her cries don't sound like pain.. just scares her. I mean, she's like a toddler again learning to walk. Falling is inevitable, but we try to prevent it as much as we can. She ha
s slight foot drop in her right foot. We put her in the "ASOs" at night, which look like boots (she loves them).. we stretch her whenever we change her diaper.. and we alternate foot brace vs. no foot brace to build some strength. It seems promising that she will be okay, but may need inserts in her shoes eventually.. pfff. I can handle that.
When you look at her, her arms look totally normal. No weakness noticed in one arm or the other. She has some bilateral generalized weakness just from surgery and not moving as much. We do lots and lots of crafts in out house right now to keep building strength. But her upper extremities don't concern me.
It took us awhile to get into Physical and Occupation therapy.. like.. 3 weeks. If she hadn't been progressing so well at home, I would've been incredibly annoyed with the discharge process in regards to.. well, most everything.. but mostly her therapy. Vivi went from having therapy 3 hours a day to.. nothing.. for 3 weeks. NOTHING. It is really difficult to get into the Neuro-Rehab because there is such limited space which is why it took so long. Luckily, she's got Bryn who she wants to keep up with and has really helped with "at-home" therapy. She had therapy Wednesdays and Thursdays for 2 hours. She already is done with Occupational Therapy and has Physical Therapy just once a week. We may increase her therapy once she gets out of her brace, but as of now.. we are at a plateau of progression until that happens.
She has her sutures removed and did really well. Her back looks awesome. We took out her NG tube a couple weeks ago. She still isn't eating awesome, but she drinks really well. We have been giving her pediasure to supplement. Do you guys know how expensive that is?! $12 for a 6 pack. WHAT!!!! Insane. She drinks like 3 a day.. and Bryn drinks 1 a day because.. sister probs. I've tried to get Vivian to drink smoothies instead but haven't had luck.. yet. It's all coming together.
Her back brace will remain on until September 15th, at least. It's sounding like it'll be on longer.. ugh. She has a CT to see how her vertabrae are healing.. and if they are healing straight. We are trying to avoid putting hardware in her spine so I don't mind leaving it on as long as she needs it!!! She really doesn't mind that either. But, it just limits a lot, ya know? I just want my kid back to her baseline. Sorting through her summer clothes/swimsuits the other day was devastating to me because she is missing out on all the fun summer stuff. She won't get to even wear a swimsuit this year.. and that just is hard to wrap my mind around. But, I'm so thankful this is happening while she is so young.. she has no idea what she's missing. She thinks this is the life. Sweet girl.
After the suture removal, they decided to do an xray. I assume most people know what "MyChart" is.. but quick summary.. your health information is online. It send updates when new test results are available.. has your appointments.. BILLS.. etc. I hate it. I don't think it should release ANY test results until a doctor has discussed them with you.. but it does. And, like the glutton for punishment that I am, I can't help but to look. Her last x-ray showed a little "reverse kyphosis" and Dr. Mangano said it's totally something she could live it.. but if it progresses, it may need surgery. Well, according to the x-ray.. it progressed. Now, no doctor has called to discuss the results with me but.. ugh. So, we'll see. We decided to switch back to her previous brace. We liked the way it held her neck better.. and it was less HOT.. the problem previously was the it caused pressure areas. She wore it 24/7 though. We are going to attempt to have her wear it when she is up and off while she is lying down and hopefully straighten that spine back up. She sits more comfortably in it as well because it doesn't come down to her pelvis like the other one. We'll see. I'm willing to try anything to prevent my girl from going back to surgery.
I'm back to work. It feels.. strange, worse than coming back from any maternity leave. It's so needed for my mental health, but it's hard to be away from my people. Financially, it's necessary. I carry our benefits and we just moved into our new home when this all started... so those new big bills are catching up to us.
While Jake and I were in the trenches of Vivian's hospital stay, I said "I can see how people can get divorced when their kid has medical stuff going on". Listen, Jake and I are fine.. always have been.. always will be.. but that was a tough time. You learn to be super independent, we were both Mom AND Dad.. and our very little time speaking to each other was either on Facetime with the kids.. or brief text messages about what's going on with Vivi. It has been SO nice getting back to our normal.. ish. I really can't imagine going through all of this with anyone else. He's so strong on my sad days. And I'd like to say I'm strong on his sad days.. but.. he's pretty much a badass. He's better at all of this than I am.
Our only real outing (besides appointments) has been going to the 4th of July parade. We also attempted a cookout, but it was too hard. Aubrey and Vivian are a huge handful right now and require so much attention, it's really hard being out in public right now. But, I know it'll get better and easier.. and hopefully we can get back to running around like crazy people. (We all know how much Jake LOVES my non stop plans for us, right?!).
In summary.. we are happy, getting healthy.. and working towards getting our girl back to her baseline. She is killing it. I'm so proud of her. Bryn and Aubrey are amazing as well, being so patient with us. Home life is the best life!
Leaving the hospital was a little messy. It took us awhile to get her supplies for her tube feeds. Follow up appointments were messy. And then, she started having spasms. And it took a few days to get her pain under control. Those few days were absolute hell. It was hard on everyone. Luckily, Jake and I were both off and were able to get things set up and take the time we needed to get her settled and figure out our new normal. She hasn't had spasms in a couple weeks and we weaned her off all of her medications. Hallelujah.
Initially, she was sleeping in her room in her own bed. She honestly did really well with it. The problem was that she wanted the brace off so early in the evening and couldn't just spend time relaxing. She has to lie flat if she isn't in the brace. No sitting, no pillows, nothing.. just flat on her back. It wasn't comfortable to sit in the brace, so she really couldn't watch tv. So we put the futon mattress in our front room and that's her new bedroom for now. It has a tv so she can comfortably relax watching tv at the end of the day. When it's "bedtime", we just turn off the tv and most of the time she is totally okay with closing her eyes and going to sleep. It's working out much better. I love that she has her own safe space to relax and doesn't have to sit uncomfortably on the couch in her brace to watch tv. It really has been a perfect spot for her.
She has been home for a month and she has progressed immensely. When we left the hospital, she was walking with the walker.. very.. very.. slow. I had actually ordered a stool for my house to roll around on behind her because walking with her was so hard on my back. Fast forward to today and she is running around my first floor with little supervision. She is able to bend to pick things up on her own and can walk up the stairs with our assistance. Vivi thinks she is big time and started crawling up the stairs without me yesterday. Talk about a heart attack! Can you imagine if she fell? Ahhh! It's cool that she can do it but.. not yet, baby girl. She has fallen a few times and it scares her, but her cries don't sound like pain.. just scares her. I mean, she's like a toddler again learning to walk. Falling is inevitable, but we try to prevent it as much as we can. She ha
s slight foot drop in her right foot. We put her in the "ASOs" at night, which look like boots (she loves them).. we stretch her whenever we change her diaper.. and we alternate foot brace vs. no foot brace to build some strength. It seems promising that she will be okay, but may need inserts in her shoes eventually.. pfff. I can handle that.
When you look at her, her arms look totally normal. No weakness noticed in one arm or the other. She has some bilateral generalized weakness just from surgery and not moving as much. We do lots and lots of crafts in out house right now to keep building strength. But her upper extremities don't concern me.
It took us awhile to get into Physical and Occupation therapy.. like.. 3 weeks. If she hadn't been progressing so well at home, I would've been incredibly annoyed with the discharge process in regards to.. well, most everything.. but mostly her therapy. Vivi went from having therapy 3 hours a day to.. nothing.. for 3 weeks. NOTHING. It is really difficult to get into the Neuro-Rehab because there is such limited space which is why it took so long. Luckily, she's got Bryn who she wants to keep up with and has really helped with "at-home" therapy. She had therapy Wednesdays and Thursdays for 2 hours. She already is done with Occupational Therapy and has Physical Therapy just once a week. We may increase her therapy once she gets out of her brace, but as of now.. we are at a plateau of progression until that happens.
She has her sutures removed and did really well. Her back looks awesome. We took out her NG tube a couple weeks ago. She still isn't eating awesome, but she drinks really well. We have been giving her pediasure to supplement. Do you guys know how expensive that is?! $12 for a 6 pack. WHAT!!!! Insane. She drinks like 3 a day.. and Bryn drinks 1 a day because.. sister probs. I've tried to get Vivian to drink smoothies instead but haven't had luck.. yet. It's all coming together.
Her back brace will remain on until September 15th, at least. It's sounding like it'll be on longer.. ugh. She has a CT to see how her vertabrae are healing.. and if they are healing straight. We are trying to avoid putting hardware in her spine so I don't mind leaving it on as long as she needs it!!! She really doesn't mind that either. But, it just limits a lot, ya know? I just want my kid back to her baseline. Sorting through her summer clothes/swimsuits the other day was devastating to me because she is missing out on all the fun summer stuff. She won't get to even wear a swimsuit this year.. and that just is hard to wrap my mind around. But, I'm so thankful this is happening while she is so young.. she has no idea what she's missing. She thinks this is the life. Sweet girl.
After the suture removal, they decided to do an xray. I assume most people know what "MyChart" is.. but quick summary.. your health information is online. It send updates when new test results are available.. has your appointments.. BILLS.. etc. I hate it. I don't think it should release ANY test results until a doctor has discussed them with you.. but it does. And, like the glutton for punishment that I am, I can't help but to look. Her last x-ray showed a little "reverse kyphosis" and Dr. Mangano said it's totally something she could live it.. but if it progresses, it may need surgery. Well, according to the x-ray.. it progressed. Now, no doctor has called to discuss the results with me but.. ugh. So, we'll see. We decided to switch back to her previous brace. We liked the way it held her neck better.. and it was less HOT.. the problem previously was the it caused pressure areas. She wore it 24/7 though. We are going to attempt to have her wear it when she is up and off while she is lying down and hopefully straighten that spine back up. She sits more comfortably in it as well because it doesn't come down to her pelvis like the other one. We'll see. I'm willing to try anything to prevent my girl from going back to surgery.
I'm back to work. It feels.. strange, worse than coming back from any maternity leave. It's so needed for my mental health, but it's hard to be away from my people. Financially, it's necessary. I carry our benefits and we just moved into our new home when this all started... so those new big bills are catching up to us.
While Jake and I were in the trenches of Vivian's hospital stay, I said "I can see how people can get divorced when their kid has medical stuff going on". Listen, Jake and I are fine.. always have been.. always will be.. but that was a tough time. You learn to be super independent, we were both Mom AND Dad.. and our very little time speaking to each other was either on Facetime with the kids.. or brief text messages about what's going on with Vivi. It has been SO nice getting back to our normal.. ish. I really can't imagine going through all of this with anyone else. He's so strong on my sad days. And I'd like to say I'm strong on his sad days.. but.. he's pretty much a badass. He's better at all of this than I am.
Our only real outing (besides appointments) has been going to the 4th of July parade. We also attempted a cookout, but it was too hard. Aubrey and Vivian are a huge handful right now and require so much attention, it's really hard being out in public right now. But, I know it'll get better and easier.. and hopefully we can get back to running around like crazy people. (We all know how much Jake LOVES my non stop plans for us, right?!).
In summary.. we are happy, getting healthy.. and working towards getting our girl back to her baseline. She is killing it. I'm so proud of her. Bryn and Aubrey are amazing as well, being so patient with us. Home life is the best life!
Wednesday, June 21, 2017
She's coming HOME!!!
On Monday, Vivi had a spine xray after a week of lying flat. Lying flat may sound like a difficult task for a 2 year old, but in all honesty, she really couldn't sit up on her own if she wanted to. Her back has healed very nicely and her xray was great. Back to rehab we went!!!
I was really concerned with how far back the surgery and lying flat for a week was going to set us. I am just OVER being in the hospital. I want to stay as long as she needs, and not a second longer!
Monday afternoon they did her evaluation, and she really hadn't lost much. It was painful for her to stand and walk.. but she did well. She really hadn't lost anything, but was just very tight and careful.
Every Tuesday, the rehab staff and everyone involved in the patient's cases, have a meeting discussing how each patient is doing. At that meeting, they decided Vivian was not behind on her discharge date at all. She will be discharged THIS Friday, the 23rd. AHHHHH!!! The physical therapist told me at therapy and when we came back the nurse said "I have good news for you, but from your behavior, I can tell you already know." Haha no poker face at all. I couldn't contain my excitement!!!!
My excitement immediately turned to nervousness. Vivian still won't take any medications (which was her strong point throughout this.. even on her worst days, she used to be the bomb at taking medications.. not anymore!!). She won't drink. And she only snacks. Luckily, she loves almonds, terra chips, popcorn and carrots. Oh, and BACON! So.. she gets a little nutrition.. but not a ton.
In my heart, I feel like she will respond so much better in her own environment. I think we have pushed and pushed and pushed her in this hospital "Eat this, now!".. "Drink.. drink now.. drink and then I'll do "xyz" for you.. drink and then YOU can do "xyz"".. "Take this medicine.. it's purple! It's pink!.. Take this medicine so you feel better!" ...I mean, we have come at this kid in so many directions.. she has heard all our tricks. She's over it. She refuses everything orally. I'm praying at home, she feels comfortable and just eats when we eat.. drinks when Bryn drinks.. takes her meds easily..
That's my hope. But realistically, taking the tube out of her nose and hoping for those things isn't logical. What if she doesn't.. if she eats and drinks like she does now, she'll end up right back in the hospital. We can't take the risk of taking out the tube in hopes she'll make a 180. So.. we will be discharged with her NG tube. She will be on bolus feedings 4-5x a day.. and hopefully we can wean them off over the next month or so.
Definitely complicates things.. but I can handle it as long as I have my people under one roof. I can do hard.. Hell, I've been doing impossible for 2 months. Hard, I can handle.
We will go home with her walker, wheelchair, back brace, leg braces, stitches, NG tube and.. MY GIRL!!!!
The stitches will come out in a few weeks. She will come back to have them removed under anesthesia. Her incision looks amazing still!!!!
Lots of hard work ahead. Lots of doctors appointments. Lots of therapy. Jake and I have the next week and a half off. We were actually supposed to be leaving for Charleston this Friday so we had next week scheduled off for vacation. I'm not sure yet that our week off together will actually feel like a vacation. I'm ready to figure out our new normal and continue to get my girl on the right track. It'll be nice to have everyone home for a week so we can all be together and figure out what our house needs to be Vivi prepared. I've tried to think of everything.. but.. I know it'll change all the time.
We are super excited to have our girl home and to see everyone. However, I do ask that everyone is very sensitive to the fact that our girl will need a lot of care once she is home and we will not be up for long visits.. or many visits at all.
Or maybe we will be?! I'm not sure. We just don't know what the next few days.. weeks.. months will bring. Please be sensitive to my "No".
I would love to do a cookout for my girl to see everyone.. but I need to see how comfortable she is at home. As of right now, she doesn't even want to go home. That's honestly a blessing, because it would be so hard to hear her say she wants to go home all the time when she can't.. but now that it's happening, I was hoping she would be a little more excited. She will be when the time comes.. she loves our house. We will see. At some point, I'm sure we will have people over to have a cookout.. we just have to feel it out.
I can't WAIT to bust my girl out of here Friday. Whirlwind of emotions. It'll be awesome to see my girl with her dogs and sisters again. Thank you everyone for the support throughout the hospital stay. 45 days. Whew! It's too much!
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