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!

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 "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!

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

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

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.

http://www.mowatwilson.org/sophie's_page.htm

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!

What Do You Say?

As many of my friends and family know, I will always find something to relate back to the lyrics of a song that I like or that I have heard along the way. I have also been known to, on occasion, ok...often break out in to random songs.  As you read this please keep in mind this course:

"What do you say in a moment like this

When you can't find the words ooh to tell it like it is?

Just close your eyes and let your heart lead the way

Oh, what do you say?

Sometimes you gotta listen to the silence

And give yourself time to think."

Shane, Sophie and I were on our way back from my soon to be Sister-In Laws bridal shower when Shane seemed to be more silent that he normally is. I asked what was on his mind, a question that I like to ask every now and then. He said nothing, of course, and I asked, Are you sure? Then it started. 

Here is how our conversation went:

Shane: "What kind of job do you think Sophie will have when she grows up?"

Me: Silence

Shane: Asked me again

Me: "Shane, I am not sure you fully understand what is going on with your sister. Sophie will never be able to work, sweetie. She isn't going to have the mental capabilities to do it and your dad and I will take care of her the rest of our lives."

The look on his face was heartbreaking!

Shane: "You mean she is always going to live with you?"

Me: "Yes, honey, she will never be able to take care of herself."

Shane was quiet for a few minutes and I was fighting back tears. Not only was I trying to process everything that Sophie is going through, but everything that my son has to go through as a result of his sister not being what society perceives as "normal." 

What seemed like forever was only a few minutes when Shane piped up again and this time, I wasn't ready for what he had to say.

Shane had a tone to his voice, he was angry, he was hurt and he was sad.

Shane: " I had dreams for my sister. I dreamed she would have a great job. Now that's not going to happen. I dreamed she would drive a nice car. That's not going to happen. I dreamed she would get married and have kids, that's not going to happen. I dreamed she would be able to talk to me, who knows if that will happen. I dreamed she would play with me, I hope that happens."

I was in tears. I couldn't speak. Sophie was in the back seat sleeping and Shane was sitting next to me crying as well. 

All I could tell Shane was that it sucks, it isn't fair, and we are going to do the best we can. I said, I know Sophie will play with you. Then, I reached over and held his hand. We didn't speak, we just cried and I just drove.

So, what do you say? 

All I know is that Sophie's condition just doesn't affect her, Dan and I. It affects every single member of our family. Shane is an amazing child who feels deeply, loves deeply, and honestly cares about people. He loves his sister so much that it hurts me to see his dreams for her crushed. 

So, in our journey together as a family, as friends, I ask that once in a while you don't just ask how Sophie is doing, but also remember Shane in your thoughts and prayers. He needs them.