Yesterday, the doctors, Dan, and myself believe Sophie had her very 1st seizure. Usually we celebrate firsts, but not this one. We knew it was coming, but with everything we have read and heard from the doctor, we didn't anticipate it happening already.
I was helping set up for my sister's bridal shower. Around 11 am my grandmother and sister-in-law was playing with Sophie, fed her, and then Sophie was really fussy so I took her from my grandmother and all of a sudden Sophie went limp, he eyes rolled back in her head father than I have ever seen and he lips went blue. I had to "slap" her back to focus on me and I just felt in my heart that it was indeed a seizure. Sophie slept the rest of the day. She woke up for a couple of 30-45 minute installments where she was fed, but then she puked it up. Sorry, Faith!
I talked to my friend Kate, her daughter has a rare form of epilepsy, and she told me what I needed to do. I called Sophie's heart doctor and he told us that he believed it was a seizure and not cardiac related. He advised us to call her peds doctor. Dr. Adenuga was on call so I was able to speak with him. Dr. Nuga advised us that we needed to bring her in so she could be evaluated. I hesitated because I didn't want to do it, I didn't want to believe this was all happening.
Dan, Shane, Sophie and I sat down for dinner and Sophie had just woken up again. I gave her a bottle. After 1 ounce Sophie lips turned blue and she puked again. I left immediately and took her to Bixby. Once we arrived Sophie was rushed right in. There were 4 nurses and 1 doctor around Sophie all at the same time. I was impressed at how quickly they moved with her. Sophie was given an IV and she was such a trooper. The man who did it got it on the first try. That has never happened with Soph! She only fussed for a moment until I have her the rest of her bottle and she was happy. Dan got there and he was trying to comfort Sophie who was mostly mad at the fact that she couldn't put her arm behind her head with it being tapped to a board with her IV. He couldn't calm her down. I took her, we stood up and swayed back and forth. Puke....again. I was covered. Sophie slept after that.
U of M peds neurology was called and they are going to call me Monday to get Sophie is either Monday or Tuesday. I will be up there Monday so say some prayers that they can get her in that afternoon. Sophie is going to be so mad at me Monday because it is going to be a long day. Peds Neuro is going to have to clear Sophie for surgery on Thursday. Her surgery can't wait. Please believe with me that everything will stay according to plan.
Today Sophie is tired. This morning she was doing motor boats and babbling. She is now sleeping. I am going to go take her out of her car seat and cuddle with her the rest of the day. She sure knows how to keep me on my toes.
Sunday, June 10, 2012
Wednesday, June 6, 2012
June 14th & Odds and Ends
I just received the call, the date is set! Sophie will be having surgery at St. Vincent's Mercy in Toledo, OH on June 14th at 8:00 am.
I spoke with Kimby, Dr. Butto's nurse yesterday and she told me that they were waiting to hear back from the anesthesiologist to see if he could be there.
How this is all happening simply amazes me, not sure if it is in a good way or not yet. Last Wednesday Dan was told we could wait until June 20th to go back and see Dr. Butto and schedule surgery then or we could call and do it sooner. When I spoke to Dr. Butto on Friday he said that he though it needed to be done sooner than later so we made the choice to do it sooner. Dr. Butto didn't have an opening until the end of July and he said she couldn't wait that long. Really? Then why did you tell us we could wait until June 20th when we saw him again?
Instead of waiting until July Dr. Butto made his adult patient take the July opening and Sophie is in the June 14th opening. The peds anesthesiologist is out of town at that time so the adults anesthesiologist is going to be in there with Sophie. Pray for wisdom on his end to know the difference in how much a baby needs and an adult. I know it will all be ok, but extra prayers will never do harm.
In the meantime Sophie is laughing, giggling, rolling all over the living room, bearing weight on her legs, and loves to hang out in her crib. When Dan goes to get her after she wakes from her nap, she will yell at him and get mad because he took her out. She has quite the personality and isn't afraid to "tell you" what she thinks about any given situation. She must get that from her daddy....hahahahahaaa, we all know better! With all of this chaos that we are surrounded by on any given day, one thing that has remained constant and unchanged is Sophie. Yes, Sophie. Even though the chaos is usually stirred up because of her health issues, one would never know. Sophie will brighten your day, make you smile from the inside and because of her, I am a better person, a better mom! Thank you Sophie for being such a bright light in my life.
Shane has passed the 5th grade, by the seat of his pants. This has been a rough year for him with school. It isn't that Shane isn't capable, because he is very bright, but Shane doesn't give two hoots about anything. He doesn't care that he gets a 0 when he doesn't turn in his finished assignments, or he doesn't care when he punches someone for telling him "At least I have a mom"! (We didn't punish him for that because truth be known, I would have punched the kid too)
Shane has a lot on his plate and he is doing the best he can with the hand that has been dealt to him. He plays each card strategically and knows what he is doing. I can't fault him for that. Shane had a great team of teachers behind him this year and I can say that we as a family were blessed to have those women in his life as well as his principal and assistant principal. Shane finished with 4 A's and 3 C's! It could be worse, it has been worse! We just want Shane to do his best and feel good about it. The feeling good about himself is what we are working on now. Thank you Shane for being so refreshing. You are full of life, personality, and kindness. You have a heart of gold. I am proud of the young man that you are trying to become. You are like a diamond in the rough, the best is yet to be seen!
I spoke with Kimby, Dr. Butto's nurse yesterday and she told me that they were waiting to hear back from the anesthesiologist to see if he could be there.
How this is all happening simply amazes me, not sure if it is in a good way or not yet. Last Wednesday Dan was told we could wait until June 20th to go back and see Dr. Butto and schedule surgery then or we could call and do it sooner. When I spoke to Dr. Butto on Friday he said that he though it needed to be done sooner than later so we made the choice to do it sooner. Dr. Butto didn't have an opening until the end of July and he said she couldn't wait that long. Really? Then why did you tell us we could wait until June 20th when we saw him again?
Instead of waiting until July Dr. Butto made his adult patient take the July opening and Sophie is in the June 14th opening. The peds anesthesiologist is out of town at that time so the adults anesthesiologist is going to be in there with Sophie. Pray for wisdom on his end to know the difference in how much a baby needs and an adult. I know it will all be ok, but extra prayers will never do harm.
In the meantime Sophie is laughing, giggling, rolling all over the living room, bearing weight on her legs, and loves to hang out in her crib. When Dan goes to get her after she wakes from her nap, she will yell at him and get mad because he took her out. She has quite the personality and isn't afraid to "tell you" what she thinks about any given situation. She must get that from her daddy....hahahahahaaa, we all know better! With all of this chaos that we are surrounded by on any given day, one thing that has remained constant and unchanged is Sophie. Yes, Sophie. Even though the chaos is usually stirred up because of her health issues, one would never know. Sophie will brighten your day, make you smile from the inside and because of her, I am a better person, a better mom! Thank you Sophie for being such a bright light in my life.
Shane has passed the 5th grade, by the seat of his pants. This has been a rough year for him with school. It isn't that Shane isn't capable, because he is very bright, but Shane doesn't give two hoots about anything. He doesn't care that he gets a 0 when he doesn't turn in his finished assignments, or he doesn't care when he punches someone for telling him "At least I have a mom"! (We didn't punish him for that because truth be known, I would have punched the kid too)
Shane has a lot on his plate and he is doing the best he can with the hand that has been dealt to him. He plays each card strategically and knows what he is doing. I can't fault him for that. Shane had a great team of teachers behind him this year and I can say that we as a family were blessed to have those women in his life as well as his principal and assistant principal. Shane finished with 4 A's and 3 C's! It could be worse, it has been worse! We just want Shane to do his best and feel good about it. The feeling good about himself is what we are working on now. Thank you Shane for being so refreshing. You are full of life, personality, and kindness. You have a heart of gold. I am proud of the young man that you are trying to become. You are like a diamond in the rough, the best is yet to be seen!
Saturday, June 2, 2012
No Date...Yet
I wanted to keep you all informed of what is happening with Little Miss. Sophie's doctor and I finally connected yesterday and he strongly believes the surgery needs to be done now, so we are taking is advice. He said that he is hopeful that the device will work but he can't make any promises.
The good news is that just last week, Dr. Butto did the same procedure on a baby smaller than Sophie and younger and it was successful. Praying the same happens with Sophie.
Dr. Butto's nurse will be calling me to schedule the surgery. As soon as I know the logistics I will let you all know.
Thank you for believing with me that our Jellybean, Little Miss, Sophers, Loomis (Sophie has many adoring names from her fan club), will be perfectly fine after the surgery and that it WILL be a success!
Love you guys!
The good news is that just last week, Dr. Butto did the same procedure on a baby smaller than Sophie and younger and it was successful. Praying the same happens with Sophie.
Dr. Butto's nurse will be calling me to schedule the surgery. As soon as I know the logistics I will let you all know.
Thank you for believing with me that our Jellybean, Little Miss, Sophers, Loomis (Sophie has many adoring names from her fan club), will be perfectly fine after the surgery and that it WILL be a success!
Love you guys!
Wednesday, May 30, 2012
The "Right" Decision
Dan took Sophie to her check up today and her cardiologist shared some great and not so great news with us. As you may recall, Sophie was born with PDA, Pulmonary Stenosis (both were fixed in August 2011), 2 VSDs, and ASD. Well, the 2 VSD murmurs are now 1 and the remaining 1 is smaller in size. The PDA closure device looks great and so does her Balloon for her valve.
The not so great news is that the ASD hole is 1 mm bigger than 2 months ago. Sophie only gained 1lb in 2 months and Dr. Butto strongly believes that if we wait to do surgery that the hole may continue to get bigger and then the only option he will have is open heart surgery, which we have been avoiding for 14 months! The office scheduled Dan and I to bring Little Miss back in on June 20th and we would schedule surgery at that point, or we call tomorrow to do it sooner.
Dan and I were just talking and we both feel like that if we wait until the 20th that we are that much closer to Sophie having to have open heart surgery. Just typing it out is terrifying. So, what do you do as a parent? Do you wait until the 20th of June in hopes your baby grows more so her body is big enough for the device to go through her arteries and have a successful surgery, or do you schedule it now knowing she isn't quite big enough and the device might work but cracking her chest open is still an option?
The decision we have made is that I will be placing a call to Sophie's cardiologist to schedule her 2nd heart surgery. What makes this even harder to digest is that Dan and I are missing Denton and Quinton. In 9 days in their 3rd birthday. Last year on their birthday I waited with Sophie in her hospital room for surgery the next day. This year, I am terrified we will be taking her in to surgery on that day. I feel like we can't win!
The not so great news is that the ASD hole is 1 mm bigger than 2 months ago. Sophie only gained 1lb in 2 months and Dr. Butto strongly believes that if we wait to do surgery that the hole may continue to get bigger and then the only option he will have is open heart surgery, which we have been avoiding for 14 months! The office scheduled Dan and I to bring Little Miss back in on June 20th and we would schedule surgery at that point, or we call tomorrow to do it sooner.
Dan and I were just talking and we both feel like that if we wait until the 20th that we are that much closer to Sophie having to have open heart surgery. Just typing it out is terrifying. So, what do you do as a parent? Do you wait until the 20th of June in hopes your baby grows more so her body is big enough for the device to go through her arteries and have a successful surgery, or do you schedule it now knowing she isn't quite big enough and the device might work but cracking her chest open is still an option?
The decision we have made is that I will be placing a call to Sophie's cardiologist to schedule her 2nd heart surgery. What makes this even harder to digest is that Dan and I are missing Denton and Quinton. In 9 days in their 3rd birthday. Last year on their birthday I waited with Sophie in her hospital room for surgery the next day. This year, I am terrified we will be taking her in to surgery on that day. I feel like we can't win!
Friday, May 11, 2012
Scorn Not Her Simplicity
I saw this on Mowatwilson.org and I wanted to share. I didn't write this myself!
See the child
With the golden hair
Yet eyes that show the emptiness inside
Do we know
Can we understand just how she feels
Or have we really tried
See her now
As she stands alone
And watches children play a children's game
Simple child
She looks almost like the others
Yet they know she's not the same
Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no Oh no
See her stare
Not recognizing the kind face
That only yesterday she loved
The loving face
Of a mother who can't understand what she's been guilty of
With the golden hair
Yet eyes that show the emptiness inside
Do we know
Can we understand just how she feels
Or have we really tried
See her now
As she stands alone
And watches children play a children's game
Simple child
She looks almost like the others
Yet they know she's not the same
Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no Oh no
See her stare
Not recognizing the kind face
That only yesterday she loved
The loving face
Of a mother who can't understand what she's been guilty of
How she cried tears of happiness
The day the doctor told her it's a girl
Now she cries tears of helplessness
And thinks of all the things she can't enjoy
Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no
Oh no
Only she knows how to face the future hopefully
Surrounded by despair
She won't ask for your pity or your sympathy
But surely you should care
Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no
Oh no
Oh no
The day the doctor told her it's a girl
Now she cries tears of helplessness
And thinks of all the things she can't enjoy
Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no
Oh no
Only she knows how to face the future hopefully
Surrounded by despair
She won't ask for your pity or your sympathy
But surely you should care
Scorn not her simplicity
But rather try to love her all the more
Scorn not her simplicity
Oh no
Oh no
Oh no
Sunday, May 6, 2012
Mowatwilson.org
I was put in contact with Dave Curry, he lives in Las Vegas and he and his wife have a son with MWS. They decided to develop mowatwilson.org to help others connect with one another. Because of this site, I was able to meet Sarah, a little girl that has MWS and live in Northville, MI. I can't explain to you what it was like.
I was asked to send Sophie's story in to them so it could be published. Well, I did it. Who knew I would be writing our story out...again, but this time for a different purpose.
Take a gander, it will help you learn more and become familiar with the faces of MWS.
I was asked to send Sophie's story in to them so it could be published. Well, I did it. Who knew I would be writing our story out...again, but this time for a different purpose.
Take a gander, it will help you learn more and become familiar with the faces of MWS.
Monday, April 23, 2012
365 Days Later
What a year it has been! This year has been full of blessings and hardships. Dan and I were just talking the other night and I told him like I have told everyone, I feel like this has been the longest year of my life and in the next breath, I can't believe how quickly time has passed.
Looking back I am going to highlight some of the good and bad points of this past year:
Sophie's birth
Transported to Toledo Children's Hospital for 6 days
Meeting her Grammie for the first time
Coming Home
Sophie being diagnosed with Hirschsprung's Disease
Dr. Butto finding not 1 but 2 holes in Sophie's heart as well as Pulmonic Stenosis.
Endorectal pull-thru surgery when Sophie was just 2.5 month old. It was the day after the 2 year birthday day of her twin brother's. Talk about an uneasy feeling having her go into surgery!
Training Sophie's anus to work properly
4 day stay over the 4th of July at Toledo Children's Hospital because Sophie stopped eating and she was backed up with gas.
Sophie rolled over from belly to back for the first time
Doctor Appointments in Toledo every month
Happy Birthday to me!
Sophie staying overnight for the first time with Nana and Papa
Football Season for Shane
Heart Surgery at 4.5 months- the longest 6 hours of my life...literally
We got MARRIED
Sophie started being awake more and smiling
PT and OT once a week
Shane's 11th Birthday!!
MRI needed for her vision problems - U of M was unsuccessful to say the least
Physical Medicine doctor highly recommended the MRI
MRI rescheduled in Toledo
2 doctor's urged us to have genetic testing done on Sophie because of everything that she had going on. They believed it was related to some sort of syndrome.
Sophie visits U of M for genetic testing. Mowat-Wilson was what she was being tested for.
Thanksgiving...I wasn't feeling very thankful. My husband had to tell me to be thankful for the small things.
Christmas
New Year's
Sophie was diagnosed with Mowat-Wilson Syndrome on January 2, 2012 at 10:31 am.
At that point my world ended and it is starting to start up again!
Sophie getting stronger each day
Another heart surgery needed but they are waiting for her to reach 20lbs.
Sophie laughing and smiling, and giggling daily
Sophie rolled over for the first time from back to front at her heart doctor appointment the day before her 1st Birthday!!!
HAPPY 1st BIRTHDAY SOPHIE!!!!!!!!!!!!!!!!!
Whew! That is one heck of a year. What I am learning through this journey is that I have to take things one day at a time or even one moment at a time when a day seems too long! We are so blessed beyond measure and I tell myself that daily. Don't get me wrong, all of this sucks but it is starting to get a little less sucky!
Looking back I am going to highlight some of the good and bad points of this past year:
Sophie's birth
Transported to Toledo Children's Hospital for 6 days
Meeting her Grammie for the first time
Coming Home
Sophie being diagnosed with Hirschsprung's Disease
Dr. Butto finding not 1 but 2 holes in Sophie's heart as well as Pulmonic Stenosis.
Endorectal pull-thru surgery when Sophie was just 2.5 month old. It was the day after the 2 year birthday day of her twin brother's. Talk about an uneasy feeling having her go into surgery!
Training Sophie's anus to work properly
4 day stay over the 4th of July at Toledo Children's Hospital because Sophie stopped eating and she was backed up with gas.
Sophie rolled over from belly to back for the first time
Doctor Appointments in Toledo every month
Happy Birthday to me!
Sophie staying overnight for the first time with Nana and Papa
Football Season for Shane
Heart Surgery at 4.5 months- the longest 6 hours of my life...literally
We got MARRIED
Sophie started being awake more and smiling
PT and OT once a week
Shane's 11th Birthday!!
MRI needed for her vision problems - U of M was unsuccessful to say the least
Physical Medicine doctor highly recommended the MRI
MRI rescheduled in Toledo
2 doctor's urged us to have genetic testing done on Sophie because of everything that she had going on. They believed it was related to some sort of syndrome.
Sophie visits U of M for genetic testing. Mowat-Wilson was what she was being tested for.
Thanksgiving...I wasn't feeling very thankful. My husband had to tell me to be thankful for the small things.
Christmas
New Year's
Sophie was diagnosed with Mowat-Wilson Syndrome on January 2, 2012 at 10:31 am.
At that point my world ended and it is starting to start up again!
Sophie getting stronger each day
Another heart surgery needed but they are waiting for her to reach 20lbs.
Sophie laughing and smiling, and giggling daily
Sophie rolled over for the first time from back to front at her heart doctor appointment the day before her 1st Birthday!!!
HAPPY 1st BIRTHDAY SOPHIE!!!!!!!!!!!!!!!!!
Whew! That is one heck of a year. What I am learning through this journey is that I have to take things one day at a time or even one moment at a time when a day seems too long! We are so blessed beyond measure and I tell myself that daily. Don't get me wrong, all of this sucks but it is starting to get a little less sucky!
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