Monday, June 29, 2009

A new do...

A few weeks ago, Amanda (Haley's mom) came over to give Sophie a haircut. I just couldn't imagine having to take her to a salon and having to explain everything. I love it. Even if it wasn't for the shaved area. It makes her look older...not my baby girl anymore. Well, she really hasn't been ever since Elsa was born. I was amazed that once Elsa was born, Sophie instantly looked different to me. I wonder what I will think of Elsa once the baby boy is born. I will be induced on July 7th if he doesn't get here sooner. Which I really doubt he will. After all I have been through and he is still not showing any signs of coming anytime soon...I think he is content in there.

Sophie is doing wonderfully (except when it comes to sleeping at night...a whole other post). She is getting stronger everyday. And she laughs SOOOOO much. At everything and anything. I LOVE it. She has never laughed like that before. She is just having so much fun.

We all had a wonderful and productive weekend. We got to spend time with Brandon's relatives from Kansas which is always so much fun. Especially with Sophie being so much more interactive with people. We all went swimming and I was brave enough to let Sophie go down one of the kiddie slides (this is the second time we have been swimming since the surgery...the first time I was way too nervous to let her go down the tiniest slide...too scared she would hit her head somehow). My parents took the girls on Saturday so we could get all the rooms rearranged and ready for the new baby. A much bigger task than I thought it would be since all the kids ended up in a different bedroom. All that is left to do is paint. But it felt so good to clean out the closets and rearrange everything. Bye bye clutter and hello Goodwill. Grandma Debbie came over today and I got to catch up on some much needed sleep...which I should be doing at the moment.

Wednesday, June 24, 2009

All about Sophie...

A post dedicated to all the new things that Sophie is doing...26 days post-op...26 wonderful SEIZURE FREE days!!!


She is beyond what she was doing before the surgery. She is doing better than what anyone would have ever expected. She is saying new words all the time. She is using words appropriately. Instead of just crying when we walk into the building where she gets private therapy, she now points to the door and says "byebye" and "door". In general, she just talks more. Requesting things using words instead of just pointing.

She is very expressive in other ways. She laughs a lot. I think she actually "gets it" when someone does something funny...especially when it is Elsa. She is more alert and interactive. She makes a lot of eye contact and she really seems to check things out.

She is starting to count but I don't think she quite understands it. If I say "one", she will say "two" and "three".

Most of all, it's the little things that she does that I notice the most. Like the other day, when she walked over the vent on the floor. She stepped back, bent down, touched it and stood back up. It was like she noticed it for the first time.



She is gaining her strength back but she has some work to do. She mostly lacks endurance. It is all just a matter of time. Her walking is getting more stable. She is starting to adjust to her right peripheral vision cut in both eyes.

Today was the first time she was able to climb into bed. But she refuses to walk up the steps to the second floor. Though, she is okay with walking up a few steps to get into the house and the small staircase at therapy.

The more tired she is, the less she uses her right hand. That is where I see the most deficit in her physically...the use of her right hand. Though, she is doing phenomenal with her left hand. She is independently using a fork and spoon on a consistent basis. She has never self fed herself like that before.


I've tried to explain all the new things she is doing. There really is so much more. So much more than "what" she is doing. It really is just that look in her eye. You notice things clicking. Things make much more sense to her. She truly understands what I say to her. If I say something she doesn't want me to do, she will get upset as the words come out of my mouth. Before, she actually had to see the action to fully understand what was about to happen.

And for whatever reason, she has become much more attached to me. It's like she is finally going through the whole separation anxiety stage.

She has a new cry. That's kind of weird. It is a very high-pitched, scream-like kind of cry. Maybe she realizes I jump quicker when she cries like that...hmmm I wonder.

No matter what it has all been wonderful. Seeing her change. Seeing her grow. And enjoying every single minute of it.

A smooth transition...

We are so incredibly grateful and thankful for everyone who made us dinner, came to visit, called to check in on us, sent an e-mail or posted a comment since we have been home. When we were leaving the hospital, I was incredibly scared to be at home alone with Sophie and Elsa. I didn't know if I would have to energy to do it. But with everyone's support, our first week home went incredibly well. So well, that Brandon said I was being very spoiled. Which was so true. As the days go on and the more stable Sophie becomes, the easier it is getting.

Thank you Teresa (our neighbor across the street) for bringing us dinner. Thank you Robert (Brandon's boss) and his wife, Kelli, for bringing us dinner and keeping us company...we enjoyed the beautiful evening with you and your little girl, Mariella. Thank you Kelly (a neighbor that lives down the street) for bringing us several dinners to stock our freezer for when the new baby comes.

So THANK YOU all for your support.

All about preschool...

Last week, Sophie had her first somewhat full week back to school. Her normal schedule is Monday through Thursday mornings for 3 hours. She had a full day on Monday and then we took Tuesday off to make sure she was well rested for a full day of therapy on Wednesday. Unfortunately, we were all a little too well rested as we overslept and Sophie was about an hour late for school. On Thursday, she seemed to have a wonderful day. She was full of smiles and was very talkative when I came to pick her up. Miss Lisa (a paraeducator in her classroom during the regular school year) came to see her. Miss Cherie (her teacher) and Miss Sharon (another paraeducator) are in her classroom during the regular school year as well as in the summer. I think it helps A LOT for Sophie to get back into her routine with having the same classroom and seeing familiar faces. Miss Brandi (her one-on-one paraprofessional) is off for the summer so Miss Marilyn (a school nurse from another school in the district that is off for the summer) is taking her place.

Needless to say, Sophie is in very capable hands. I LOVE Sophie's preschool. I feel so comfortable having her there. I am so thankful for her teacher, paraeducators, paraprofessionals and therapists. It takes a very patient and caring person to not only work with preschoolers but those with special needs. When I spent the day with Sophie at her preschool a few weeks back, I was exhausted when I left. Not because of Sophie, she did great. But from watching the amount of energy it takes to keep the routine flowing in such a smooth manner and knowing the little tidbits of each child to help them reach their full potential. THANK YOU to all of you.

I can't believe she went back to school ONLY 17 days after having brain surgery. It is quite amazing. She is doing so incredibly well.

Wednesday, June 17, 2009

These moments...

(Note: I wrote this on Saturday evening but never got around to posting it until today so "today" and "tonight" is referring to Saturday.)

Are the ones I think I will remember forever. Sometimes I feel like these moments are not real. That this is not my life. Because I can't believe this day is here. Life feels so normal. No...much better than normal. I am on a high. Brandon looked at me tonight with happiness radiating from him and said I love our new life. Haley is with us today. Our lives feel so complete. I never want this feeling to end. Pure joy.

Our bedtime routine for our youngest girls has always been the same. But tonight it felt so different. It felt extra special...seeing Sophie's eyes light up like I have never seen them before. A smile on her face that was so pure. Part of our routine is letting Sophie and Elsa dance around naked after bath time (but only for a short bit to avoid the peepee messes and then we gradually get them in their diapers and PJs).

Brandon pulls them out of the tub and wraps a towel around them and hands them off to me. Where I snuggle with them in bed. Then he turns on the music...loud. Big smiles appear on their faces and you can see the excitement.

Tonight, Brandon swooped Sophie off the bed. Her eyes sparkled as he twirled her around. I felt like it was happening in slow motion as I watched them dance and bounce around.

I am amazed that JUST 2 weeks ago, Sophie was 1 day post-op from major brain surgery. That today is 2 weeks of seizure freedom. That today she is up and walking around. That today she is saying more words than she was before surgery. That 2 weeks ago marks a new beginning for Sophie...a new world has opened up to her. A world that is much clearer.

Thursday, June 11, 2009

A great substitution...

Instead of waking up in the middle of the night with a cluster of seizures...

Sophie now wakes up babbling nonstop.

It was 3am but it didn't matter. The sweet sound of her voice was mesmerizing. I only wish I had my video camera to catch the sounds but I didn't want to do anything to distract her.

She started off by saying "BarBarBarBarBarBar....neeeeeee". She always said "Bar" for Barney (her most beloved thing to watch on TV). And she always said "knee" when naming body parts. I have worked with her for months trying to get her to put the sounds together but she couldn't...until the other night.

Then she started to put all kinds of sounds together. Like "MaMaMaMaMaMa....meeeeeee" and "DaDaDaDaDaDa....meeeeeee". This went on for at least 30 minutes.

Right before she fell back asleep, she said "Bar....nee". Just a short pause between the 2 syllables. Hmmm...I wonder what she was dreaming about.

Day 13...Still NO SEIZURES!!!

Yesterday, Uncle Jason came over to watch Elsa so I could take Sophie to preschool. Later that afternoon, Grandma Debbie came over to play with the girls until late that night. Then that evening, Stephanie brought us dinner. This morning, Aunt Colette came over to watch Elsa so I could take Sophie to therapy and also to play with the girls. Later this afternoon, Jake came over to play with the girls and bring us dinner. THANK YOU all for being here for us.

No stopping her...

Sophie stood up by herself today!!!

She was sitting in the middle of the sunroom (more like her playroom since it is overtaken by toys) and pushed herself to a stand and walked right over to me with a HUGE smile on her face. She was so proud of herself.

It is only a matter of days now that she will be doing MORE than she was doing before surgery. She is already there cognitively but still a little weak physically.

She amazes me. Less than 2 weeks ago, she had a majority of her left hemisphere of her brain removed!!! Less than 2 weeks ago!!! How is that possible?!?!

Back to school...

Yesterday, Sophie had her first day back at preschool through our local school district. We decided for her to go back on Wednesday because that is the day she gets speech, occupational and physical therapy. I wanted her therapists to be able to evaluate her and get their thoughts along with her teacher's thoughts on going back to school.

She had an amazing day. I was surprised by her endurance. We were only going to stay for half a day but we ended up staying the entire 3 hours.

She remembered her routine and was even showing me around the classroom. There was a moment when we got back from speech therapy that her classroom was empty. Her classroom is set up where they have different activities in different areas of the room. She walked up to one table in particular and said "draw". Sure enough, it was the table they draw at because there was all kinds of art supplies right next to it.

She got excited for snack time and had no problems walking down the long hallway to wash her hands in the bathroom...the same hallway she was too tired to walk down after physical therapy.

Her occupational therapist worked with her in the classroom during snack time. The way that girl eats would think I was starving her. She is so motivated by food and perks up every time I say the word "eat". Trust me...I feed her plenty and even switched her to whole milk to get some meat back on her bones. She lost 3 pounds in the hospital which may not sound like a lot but that is 10% of her body weight.

So by the end of the day, we decided that she will go back to school full-time (4 days a week for 3 hours a day) next week and will have a one-on-one aide that is a nurse.

Tuesday, June 09, 2009

A new beginning...

I feel like a different person. A different mom. A different family. I feel like a huge weight has been lifted from me.

I know this is only Day Eleven of seizure freedom and we still have a long road ahead of us. But it is a road filled with excitement and hope. A road where I get to witness all the new things that Sophie will get to do...that she is ALREADY doing.

To have one morning...JUST ONE which you can wake up next your child with big smiles on your faces...without the knowing that a big cluster of seizures is about to take that all is indescribable. There is still that moment...a moment where I hold my breath and watch intensely...wondering if IT will come. But IT doesn't. And knowing and wondering are two completely different emotions.

I am treasuring each and every moment. Holding on to the moments that use to be stolen from us. Because you just never know. Sophie was once seizure free for 33 days. But the difference between then and now is that we had no idea why Sophie became seizure free. It just happened. There was no change in medication or diet. There was no surgery to explain why.

It's been a crazy few days. Trying to get settled in. Trying to figure out our new routine. I set up a few private therapy sessions for Sophie this week. She had PT this morning which her therapist was quite impressed with how well she is doing so soon after surgery. Tomorrow, I will take her for a short day at preschool. She will get PT and OT while she is there and I will stay with her the entire time.

We have been receiving so much support since we have been home. Aunt Colette decorated our house with flowers, balloons, a banner and a cake for when we got home. Yesterday, Aunt Cindy came over to visit with the girls and brought us lunch. Heather and Jennifer (both friends that live in our neighborhood) brought us dinner last night and tonight. This morning, Stephanie (another neighborhood friend) watched Elsa so I could take Sophie to her PT appt and go to my OB appt**. My mom came over after that to help out with the kids. THANK YOU to everyone for being so supportive so that we can truly enjoy our first few days at home. And how wonderful it has been to be home together as a family...I am bursting with joy.

I promise to update soon with all the new things that Sophie has been doing.

**I had a routine ultrasound to check the position and weight of the baby. Everything looks great.

Sunday, June 07, 2009

Home Sweet Home...

We are home!!! I can't believe it. It feels so surreal. I have never been so tired but at the same time I can't wait for morning to come. To see the expression on Sophie's face. To hold Elsa in my arms again. Time to go cuddle with my sweet Sophie.

Saturday, June 06, 2009

Where did our Sophie go???

Because we have never seen her so awake and alert before!!! It is amazing to see her so wide eyed and taking in everything around her. She has her old spunk back plus so much more. She is happy and laughing and just being her silly self. She is saying new words..."home" and "barbar (barbie)" is her latest. She said "home" four times in a row. We told her soon baby girl soon. Hopefully tomorrow but probably Monday. With the little that she has ate today (only a few bites of jello, a quarter of a banana, a couple grapes and a milkshake), she has so much energy. She woke up at 7am this morning (but didn't have a restful night of sleep) and only took an hour nap today. It's a little after 10pm and she is still going strong. She is watching Big Rock Candy Mountain and is bopping herself on the head (like bunny fufu). It is amazing now to realize how much those seizures really wiped her out.

This afternoon, Brandon gave her another shower. For the shower, they disconnect the tubing for the IV and wrap her arm in plastic. It was around 2pm and she wasn't due for another IV med until 6pm. The nurse allowed us to stay disconnected so we took advantage of it. She had PT which she cried the whole time but did wonderfully walking. Then we put her in the stroller and took a long walk was so nice not having to drag the IV pole around. The nurse came around 6:30pm to give her Zantac through her IV. It leaked and her arm started puffing up. The IV came out of her vein. A blessing in disguise. She is now on all oral meds. She had her first dose of liquid suspension Dilantin mixed with Sprite and she drank it just fine. And she hasn't vomited since right after breakfast this morning!!! I think the only reason she did vomit this morning was because of her gag reflex after taking a bite of toast. I think her esophagus is sore from all the vomiting. After that we gave her only soft foods (see above).

She had so much fun today and she really cracked us up. I am LOVING seeing her like this.




Friday, June 05, 2009


This will be my final post and I will give Elaine her blog back permanently (with one suggestion, you may want to update the header in the beginning of the blog). My brother and I teased her relentlessly since the success of the What is That Beeping post…she even changed the password. Jealousy in my view :) We would count the number of comments telling her that she would never beat my record. My brother told me never to post again and go out as a one hit wonder. Hopefully this post sets a comment record…to honor the real reason Sophie has been given this opportunity at a better life.

I had the hopes and plans of writing this post for some time now. Hold on while I leave my man card at the door (man I wish so many co-workers didn’t follow this blog now). Ever since Sunday May 7th, 2006, at 11am to be exact, Elaine has been fighting. As I mentioned before, I handle difficult situations by assuming the worst and hoping for the best. When we held each other at the hospital the first night when receiving the news that the MRI was “clean” (we found out later on that in fact it wasn’t as we repeated the test in Detroit), Elaine proclaimed “our baby girl is going to be alright” with tears of joy pouring down her face. I, on the other hand, was thinking to myself, “heck with that, this is just the beginning”. This was the first of multiple times that this same embrace (and thought process) occurred. In many respects, we were both right.

But Elaine believed what she said and there was no way that she was going to let any doctor tell her otherwise. I must admit, this whole support group and blogging thing seemed pointless to me…a complete waste of time…depressing… There was a time when I resented this community for taking so much precious time we could be spending as a family. You guys were stealing my wife from our marriage (to be fair, we found two…VERY SHORT…opportunities for our marriage that resulted in Elsa and the baby boy…but I digress). Carpe Diem, right!!! We were dealt this sh*tty hand but lets enjoy the days (at least the seizure-free parts of them) that we have together. Maybe I had a right to feel this way; however, I couldn’t have been more wrong. This community is what took us on this journey that has brought us over a week of seizure free days.

I (selfishly) don’t want to leave the impression that I gave up, because I didn’t. I never once told Elaine no when she found a “new” or “experimental” idea from her research, or advice from someone we never met in Hawaii, or a drug not FDA approved, inter alia. I never told her my inner feelings that this is all for naught. My support was in the form of “sure, when is the flight” (and every once in a while, “how much does that cost again”)??? It didn’t matter. I was prepared to try everything…everything that Elaine discovered. The main lesson I have learned SO FAR in this journey is that no doctor will be your advocate and no doctor knows everything. All but one doctor told us that surgery would never be an option. Elaine found that one doctor. YOU MUST BE YOUR CHILD’S ADVOCATE!!!

I feel remorse as I write this, because I know that not all children can be given a chance, regardless of the finances and resources available. We were dealt this hand but it is far from the worse hand we could be dealt. However, each journey is unique to the person on it.

After about 6 months of Sophie’s infantile spasms, I did not shed a tear feeling sorry for us (in fact, I had to repeatedly remind myself that Elaine and I are NOT really going through it, it is Sophie). Don’t get me wrong, I have cried frequently (usually in the privacy of the shower or my car ride home…people next to me must of gotten a laugh) but it wasn't because I was sad. Rather, it was ALWAYS when Elaine had another PLAN to stop Sophie’s seizures. Each time, I let the thoughts of happiness and joy of giving Sophie a better way of life creep into my head. Once reality set in (usually only took 2 minutes), the tears would stop. Is that perverse to cry about the POTENTIAL happiness???

Back on point, as we held our breath when Dr. Chugani and Dr. Asano walked into the waiting room, we clutched each other’s hands. Receiving the positive news and not really knowing yet whether Sophie would wake up without seizures, we both cried those long-awaited tears of joy. I said to her “YOU DID IT!!!” whiling sobbing like a little girl of course. She generously replied “WE did it” but I appropriately corrected her with “no, you did”.

It has been a long journey and I am not na├»ve enough to think that there won’t be more twists and turns. But in this moment, I couldn’t be happier. I love you Elaine. Thank you for watching over our sweet Sophie!



Another night of vomiting means another day in the hospital. Sophie vomited again...ugh!!! It just doesn't make sense. It is only once a day and it is right after dinner. At least this time it was not as much as the last 3 nights. Then again, we barely fed her today. Breaks my heart. She barely has any energy. She is still on IV liquids so she is getting what she needs but she wants to eat so bad.

Even though she is vomiting, we still started her on a liquid suspension of Depakote (Valporic Acid) that is given orally. She is getting 150mg 3x/day. The liquid suspension is absorbed much quicker than the Depakote sprinkle capsules. Plus we mix it with a bit of Sprite and she doesn't mind the taste. She gets it as soon as she wakes up in the morning, later in the afternoon and right before she goes to bed. So this dosing schedule does not interfere with her vomiting routine.

I am not sure what or when they will start the liquid suspension of Dilantin.

Brandon is taking the night shift (NaNaw took it last night) and I am off to bed.

Just that much better...

Painting with her RIGHT hand in the playroom. We do everything possible to get Sophie out of her hospital room as much as we can. Her favorite word right now is door. She loves her stroller and never wants to get out of it. She gets upset when we do take her out of it to get her to walk more.

Snuggling with Daddy while watching a movie. I was jealous. The bed is way too high and little for me to climb in...soon Sweet Sophie...soon Mommy will be able to snuggle with you in bed.

Riding a bike during physical therapy. Sophie cried and cried and cried during PT. Brandon thought maybe she was in pain but she wasn't fooling me. She did that same thing with her PT evaluation a few weeks ago. But we were both scared that she was going to vomit when she started coughing. So far so vomiting and the gastroenterologist came by to check her out. They are going to put her on IV form of Zantac. We have given her very small bland meals with a few small snacks in between. Cross our fingers!!!

Despite all the fake crying, she did really well during PT. She is getting stronger and stronger everyday. She did even better with taking steps today. I think within a week or two she will be walking better than she did before surgery.

We also went for a walk outside today and had a late lunch in the courtyard. The fresh air feels good. We got Sophie out of her stroller and had her walk up to some flowers and bend her knees to touch them. She wasn't too happy about that.

It's about 5:30pm and she is sleeping peacefully. It has been a long day for her today. She woke up at 4am and by the time she fell back asleep at 7am, there was some VERY LOUD construction right underneath us that woke her up. She only took an hour nap this afternoon.



Heart Connect..

For such a rare disease, I am amazed at the connections I have made with other families going through what I am going through. The internet is an amazing thing.

A few days ago, I got to meet Bennett (or Benney as Brandon likes to call him...hope you don't mind Ken...and he keeps singing BaBaBaBennie and the Jets) and his parent's Ken and Jen. The IS family is a close knit community. I stumbled across his blog page (Blogzilly) from a link on Danielle's blog page (Dear Trevor). I was immediately drawn to his blog. They are new to the seizure world. Their son was diagnosed with Infantile Spasms about 3 months ago.

I felt connected to this family. Their pain so new and so raw...brought me back three years ago when Sophie was first diagnosed. My heart ached for them. I wanted to take away their pain. Ken is so incredibly open and honest with his feelings. He has the ability to pour his heart out and describe them so well with words (something I wish I could do). He tells it like it sugar coating.

Bennett is the most adorable little boy. He was napping when we went to visit. Sleeping peacefully in the metal hospital crib with his head covered with leads and all wrapped up in gauze. After awhile, he woke up with a smile. Such a precious smile...melted my heart. Makes me long to meet my little boy and hope that he is half as cute as Bennett.

There is just something about meeting another IS family. Can't describe it. I am not the touchy, feely, huggy kind of person when it comes to people outside my immediate family but I wanted to wrap my arms around them and tell them that is was going to be okay. Okay in our world can take on so many different meanings but I just feel deep down in my heart that Bennett is going to beat the odds. I hold on to that hope for this family because I know how easy it is to lose it.

Bennett is here for the standard testing...24 hour video EEG, PET scan and the much awaited appointment with Dr. Chugani to see if he is a surgical candidate. I am sure they are on the edge of their seats, trying to stay calm, waiting to see what the future holds for their son. So please keep them in your thoughts and prayers.

Thursday, June 04, 2009

What goes down must come...

Up???? Sophie has been vomiting for the last 3 nights...EVERYTHING she has ate for the entire day.

Be forewarned...this post is not going to be pretty.

Sophie has vomited here and there after surgery. In small quantities. To be expected considering everything she was going through.

But once she became awake and alert, she has been wanting to eat. She gets excited when she sees food. She has started eating solid foods on Tuesday. And she has vomited every evening since then. To be graphic...we know it is everything from the day because of the quantity and because you can actually see what is in the vomit.

It is so frustrating. Her IV can't come out until she stops vomiting. We can't come home until her IV comes out. So each day she vomits, it's another day in the hospital. But she is clear to go from a neuro aspect. They do not believe her vomiting relates to anything neurological. So once she stops vomiting, we can be released.

Of course, in the big scheme of things, this is minor. I mean she is NOT HAVING SEIZURES.

Each morning, I wake up optimistic. Another morning without seizures. Sophie's worst cluster was always when she woke up in the morning. They would upset her. I had to be right by her side. They wore her out. I held her and comforted her until she felt better. That is how we USED to start our mornings. That's why I LOVE taking the night shift now. Because that means I get to wake up with her in the morning and see my beautiful girl wake up in peace. It's a wonderful way to start the day. I cannot even express in words what that does for my heart.

But then by the end of the day I am beat. Exhausted. Disappointed that she has vomited again.

To recap the day and to focus on the positive...

Today she had OT and PT. She is doing amazing. Getting stronger everyday. She took a lot of steps during PT with assistance for balance but she was doing a great job bearing weight on her legs. It takes a lot of energy and coordination for her to even take a step. She barely lifts her foot off the ground but she is doing it. It is coming along.

Brandon gave her a shower and she loved every second of it. She got very upset with me when I put the towel around her to take her out.

She loves her stroller and is constantly pointing at the door and saying "doooor". That is something new. Before she always said "doh" but now she has that "r" sound. I am sure if she could say "home" she would because I know that is where she wants to be. She is out of her bed for most of the day.

Brandon and NaNaw took her down to the playroom this afternoon. She had so much fun and did a great job sitting up and playing with toys. She sat for about 15 minutes straight without any assistance.

Later, Brandon and I took her for walk outside and she fell asleep in her stroller. The fresh air was rejuvenating for all of us.

Here are some pictures...

Spoiled Rotten...

I am overwhelmed with the love I have received over the past few weeks. Between the comments, e-mails, posts, phone calls, cards, packages, thoughts and prayers...I can not possibly put in words how much this means to all of us. Your support is what has gotten us through this when all our energy had been drained. It touches the most deepest part of my soul and I am forever grateful to you all.

Thank you Colin and Nicholas (Sophie's cousins) for the yummy cookies, muffins and brownies. Sorry Colin...but I don't think there will be any left for when you come visit us **smile**.

Thank you Shelia, Trevor and the rest of the clan for the package sent ALL THE WAY from Hawaii. Trevor had surgery here in Detroit a little over 10 years ago!!! We were introduced through Emma whose son, Alex, also had surgery here around the same time.

Sophie's get well crew...

Thank you Meghan, Tony and Jackson for the adorable Get Well Soon bear (on left). Jackson had surgery here in Detroit last September. We met Jackson while he was in recovery when Sophie was getting a round of testing done. Meghan has been a tremendous support in helping us understand what Sophie is going through.

Thank you Kat, Mark & Matthew for the cuddly purple bear and balloons. Mark is one of Brandon's co-worker.

Thank you Jake (Brandon's cousin but more like brother) for the snuggly bear (right) and balloons. When I have the energy I will have to do Hospital Owl and Hootie justice.

Thank you Zack (Sophie's cousin) for the yummy cookies. When Brandon brought them in and asked if we knew who they were from without reading the card, I immediately thought of you when I saw the dinosaur cookie.

Thank you Jennifer (a sweet friend of mine) for the delicious cupcakes. It may sound weird comparing a person to food but...they were just as adorable as you are.

Thank you, again, Kat, Mark and Matthew for the scrumptious cookies. You should have heard Sophie say "Bee" when she saw the arrangement. It put a smile on all our faces.

Wednesday, June 03, 2009


It has been another great day of progress. But I am exhausted!!! Emotionally, physically, mentally.

Sophie had PT and OT. She sat up so well for OT. PT worked hard on her standing skills. I keep telling myself to be patient. She is doing great. EVERYONE keeps telling us how well she is doing...the doctors, the therapist, other parents who have gone through this.
Her cognitive skills are amazing. She is talking up a storm. Okay...not quite a storm but for her...a storm. She is even saying NEW words. I am so proud of her. Things are clicking up there. Her brain is reorganizing.

The most important thing is that WE DID NOT SEE ANY SEIZURES TODAY!!!

Tuesday, June 02, 2009

A new day...

This morning was the first time she had any type of therapy. An occupational therapist came in to work with Sophie. She did incredible. Even though she has weakness on her right side, she could feel her muscles twitching when she did exercises with her. The therapist said this meant that it was just a matter of time before she regains her full strength back.

I am glad they are having therapists come in the room to work with her. The entire time the OT was in, Sophie cried. It's hard on my heart but I know it is best for Sophie. Sophie resisted her which is good because it makes her use her muscles. She had Sophie sit up in bed. At first she was pretty limp. But as she massaged her neck and shoulder muscles, I could see Sophie getting stronger. She actually held her head up by herself for a few moments!!!

A few hours later, two physical therapist came by. Sophie had just finished eating lunch. They had her sit up in bed and I was amazed at how much stronger she was already. They then said they wanted to try to get her to stand. I was a little nervous. Of course, she was crying through all of this. Once they got Sophie all situated, they put her legs over the edge of the bed and had her bear weight on her legs. She was a bit wobbly but she did it. She didn't have any balance but this was the first time she had been on her feet for a week. I stood a few feet in front of her and she attempted to take steps towards me.

Once she got to me, she put her arms around my neck and I gave her the BIGGEST HUG. The first hug I have gotten from her in over a week. It was a precious moment. Not at all awkward. It felt natural.

She stopped crying and started looking around at her surroundings. She was so aware. And not in as much pain as she led me to believe she was in!!!

Then, they had her do some tummy time in bed. She was able to hold her head up and turn it both ways. Then she just laid down and passed out.

It was so heartwarming to see all of this. And this is just the beginning.

Before dinner, we gave her another sponge bath and I worked on that hair some more. It is so greasy on top...I am wondering if they put vaseline or something like that to smooth is all down because the rest of her hair looks fine.

She ate a wonderful dinner (and lunch) but as soon as she was done eating she vomited EVERYTHING she ate today.

But afterwards, she was in such a great mood. VERY TALKATIVE!!! She said over 30 words!!! We did flashcards and played with toys. She was on a roll.


She made a lot of eye contact and would look around to find me in the room. She tries to sit up by herself. She is spontaneously saying words. It might just be me but she sounds a bit clearer than before the surgery. She's smiling...A LOT. Though it is a little lopsided consistent with her right sided weakness. But I know it is just a matter of time before it all comes back.

Simply amazing how much can change in a day.

It's 11:10pm and she is still going strong. She is watching one of her favorite movies...Big Rock Candy Mountain (one of Haley's favorite when she was younger).

I have so much video and pictures to download but I am way too tired. I am taking night duty tonight. I promise to post them as soon as I can.

It's now 12:10am and Sophie finally fell asleep! Sweet dreams my precious little girl.

All cleaned up...

This is a picture of Sophie's hair...pre-hairwashing yesterday morning. Do you see the big knotted mess on the top right of her head...can't miss it!!!

Here's a picture after working on it for over 2 hours straight...the sponge bath way. There is still a lot of ickies in her hair but my feet were getting extremely tired and swollen after standing for so long and I gave up. Also, that big knot on top her head just wouldn't untangle. I got it down to about the size of a golf ball and then cut it off (still leaving about 4 inches in length). As I cleaned her hair in sections, I put braids in it so it wouldn't get all matted up again. Doesn't she look so sweet and peaceful?!?!

Different point of view...

I guess Brandon and I saw 2 different Sophie's yesterday. I was surprised but happy to read about the things she did yesterday that I didn't know of. Amazed really.

Brandon captured some of the things he talked about on video...

The Progress

It is 3am and Sophie just woke up, looked up at the TV and said "bear" as clear as I ever have heard. And it was actually a bear. Kind of boring (tired) but I thought I would list the things Sophie accomplished yesterday:

-- Said "juice".
-- Took a playing card with a frog on it switching from hand to hand bouncing it accross her stomach. Her and Elsa both love things that "hop". Usually she says "hop hop hop" but the motion was great progress. Especially that she used both hands.
-- Turned pages on her touch and feel books smiling several times and laughing when touching some of her more favorite pages.
-- Pointed to my eye when asked to point to daddy's eye.
-- Played obsessively with her baby doll's eye lashes. This has always been one of her favorite things.
-- Fed her puppet (in her left hand) by picking up play food with her right and putting the food in its mouth.
-- Is really pulling her head up more and more every time she wakes up.
-- Drank a lot of juice, ate some jellow and sherbert...and kept it down.
-- Elaine washed most of her remaining hair and put in cute braids.

Update as of 8am:

Sophie had a tough night (threw up once, blood draws, pain, etc.) but this morning has been, as a little girl in our neighborhood always says, TOTALLY AWESOME! She has been clapping her hands and smiling. Said bear again. Danced her bear all over when asking her to. Turning her head. Trying to sit up. Pointed to the bear's nose and eyes when asked. Of course, she wouldn't do any of this for the doctor and 2 seconds after the doctor walked out, she started clapping.


Monday, June 01, 2009

Having a moment...

I know in my heart that she is going to be okay. BUT I miss her. I miss her so much. It's so hard to see her like this. So emotionless. So quiet. So limp. I miss her smile. I miss her kisses. I miss her words. I know this is all temporary. That soon enough I will have her back. But in this moment...I am heartbroken. I wasn't prepared for this. I knew there was a possibility for weakness but this is beyond weakness. I get blank stares. Sometimes I don't know if she is awake or sleeping with her one eye open.

None of the doctors are worried. They say to give it time.

The only thing getting me through this moment is the fact that we have seen NO SEIZURES. It is absolutely amazing. I hold on to that.

I also hold on to the thoughts and prayers sent by all of you. I feel beyond words the love I receive from people who care...some that I have never met...some that just found out about our journey. The words of wisdom from those who have been through what I am going through gives me hope.

We have had a day filled with joy. Progress made by Sophie. Thoughtful care packages sent from all over the country.

But at this moment...when I stare into her eyes...I wonder when I will get her back and it fills my heart with sadness.

It is not easy being in a children's hospital. There is sadness all around. Crying parents. Crying babies. Parents who are given no hope at all. Toddlers crying for their parents that are no where to be found. It breaks my heart. It is hard to watch others suffer.

I feel selfish. For not being more patient. For feeling sad when the doctor's are so hopeful. For wanting so much more when I am surrounded by those who have yet to experience the joyful things that I have experienced with Sophie and who may never experience those things with their child.

I pray for our last roommate...a baby girl who is only 5 months old and diagnosed with Infantile Spasms and Aicardi Syndrome. Her parents are way too young to care for her and her mom is ready to give up. Fortunately, her grandmother is fighting for her.

I pray for the young mom sobbing in the PICU because someone shook her baby and she doesn't know how she is going to care for her child.

I know these are a lot of random thoughts. I think the week has caught up to me. That a mental breakdown was bound to happen. It just seems like life is so unfair and I am not talking about me. For these children. Who have to suffer. It just doesn't make sense.

Yesterday's pictures...

Sophie loves to play with her babydoll's eyelashes.