Friday, January 15, 2010

Post-op Detroit visit...

Note: We arrived in Detroit on Monday, November 16th.

We met with Dr. Sood on Monday. He felt around on Sophie's head and said it all looked great. The gaps that we feel are normal. I guess the bone is suppose to grow back over time. He commented on how well she seems to be doing developmentally. And in less than 5 minutes we were out the door. Never to see him again. Hopefully. But I couldn't help but feel connected to this man. The man that removed a majority of my daughter's left hemisphere. The man that held her brain in his hands. But, alas, this is his job. Not his life. And on our way we went.

I wish Tuesday could have gone as smoothly. Getting her sedated for her MRI was quite the ordeal. They stuck her twice and missed. Shot Versed up her nose which made her gag. Then stuck her two more times and missed. Took her up to pre-op area (same place she was before her brain surgery...that was emotional in itself) and then gassed her up. And finally put an IV in her wrist that worked. Needless to say, she was upset when she woke up. But she forgave us quickly and had fun getting pampered back in our hotel room.

Then was the highly anticipated appointment with Dr. Chugani on Wednesday. It was jam packed in the waiting room. Our appointment wasn't suppose to be until later that day but we (along with many others) were bumped up because he was leaving to go out of town. In the first 10 seconds of the appointment, his comment was... "Is she always this hyper?". He suggested giving it some time but thought she would ultimately have to be put on risperdal or adderall. But, overall, he was impressed with her development. He didn't have the results for the MRI because it is going to take some time to analyze. We are going to leave her medications as is for now. She is suppose to have a repeat 1 hour EEG in 6 months. But I don't think I can do that to her. There is no reason to unless we are going to try to wean a med.

Then I asked Dr. Chugani a question that is better left unanswered. Because nobody knows the answer*. They are just guesses. But I couldn't help but ask. Whether from his own past experiences, if he felt that Sophie would ever be able to live a somewhat normal life. His answer... "Independently? I don't know. But I definitely think she will be able to live in a group home."

And that got me all worked up inside. I couldn't let it go. I was crushed. And it took me months to pick up the pieces. But I did. I have moved on. And my hopes are growing once again. Because Sophie is a fighter. And I believe in her. And with every crazy twist and turn this journey has taken us on, it only gets better. And I have to believe in the moment. Especially, when I think about the past.

Because if someone told me on May 10, 2006 (the day Sophie was diagnosed with Infantile Spasms) that Sophie would someday have almost half of her brain removed and that she would be better off because of it. I would not have believed them. But it happened....on May 30, 2009. And I saw it on her most recent MRI with my own eyes. It was quite eerie. Looking at almost half of her brain missing on the MRI and then looking at her. Standing before me better than she was before. How is that possible? She is missing almost half of her BRAIN. Her BRAIN. It is hard for me to come to grips with that at times.

Okay, that was a summary of the medical portion of our trip. Now for the fun stuff...

In order to keep Sophie distracted while she couldn't eat anything after 10am on Tuesday, we took her to the Warren Community Center pool that has a huge indoor play structure and lazy river. It was only about 20 minutes away. We all had so much fun but we miscalculated how long we could actually keep her entertained in the pool. Actually, it was Brandon and me that were exhausted. I think Sophie could have kept going.

So around 1pm we got out of the pool, showered and got dress. Also, in the Center was a library. So we found some of her favorite books to read to pass some more time. Finally, we headed to the hospital.

We stayed at a casino hotel that was only a couple miles away from the hospital. Sophie had fun eating room service, taking hot showers and getting ice from the ice machine. Besides the sedation, she had a blast. She amazes me with her resilience. I only wish I could bounce back as quickly as she does. One day at a time...right? I try.

* Because there is a part of me that does believe...the part of me that wishes my faith was stronger... I feel compelled to say...He knows.


MJStump said...

It sounds like you guys had quite the visit. I guess visit is ever really small is size...we just hope that maybe they will be.

What is it about us moms always asking those know, the ones that we are scared to hear the answers to, but just have to ask. There is just something about wanting to know more, trying to get a glimpse into the future...what things might be like, or could be like for our kids.

Your ending note said it all though:

Because there is a part of me that does believe...the part of me that wishes my faith was stronger... I feel compelled to say...He knows.

I think what we struggle with the most is not knowing. He does know, and the fact that we don't makes us feel the way we do, and ask those questions...because we want to know what He knows.

Great to see the pics of you guys having some fun times with Sophie during your time in Detroit...those are the moments we need to hold close, even when we have the moments that worry us so. Is it easy to do...not always, but we all try.

Hugs, Love, and Prayers,

Sinead said...

Oh Elaine. Nobody wants to hear the words group home. Devastating. I don't know how he could say that. Sophie is doing so well. I just think it's premature to look at a prognosis right now.

Lisa said...

The not knowing is the hardest part of all of this. And what Dr. C said is certainly not what any parent wants to hear. But you know what? He doesn't know, the same as us. Time will tell, and I think the fact that she's progressing is what is key. In his mind he probably thought he was telling you a good guaranteeing the possibility of independent living in some form and leaving the door open for true independent living.

Hugs to you!

baby trevor's mommy said...

How did I miss this post last week? Eh...was probably pity partying or something? :) I love your HONESTY! Love it! Love you! Love her! And SO SO SO wish I could hug the snot outta you right now!


And you know what. If Trevy and Sophie are demi-independant...we'll just buy a duplex! So they can live right beside us!


Adesta said...

I love Danielle's solution for Sophie and Trevy! Even as a parent without kids with special needs, I cringe at the term "group home". The word "STERILE" just yells out at me when I think of those places. I'm sure there are perfectly good ones out there, even great ones, but I wouldn't want to place my child in one. EVER.

It is good to see Sophie having so much fun! I'm jealous of your visit to the water And how great to have the library right there too!? I love libraries. :)

blogzilly said...

My head has been so far up my ass these past few months that I missed this post too. My wife had to point it out.

So this all went down in November, and you are just now blogging about it? That's very interesting, and certainly something I totally understand.

Good to know you have your head around it now a little better. That's a big deal.