Our Sweet Sophie

She is doing GREAT!!!

2012-01-27T07:00:00.000-06:00

Oh goodness, I am horrible. Sorry for the lack of updates. Life has been...well...crazy but in a good sort of way. I mean, I am a stay-at-home mom of three kids. One that is recovering extremely well from brain surgery. Another that is a keep-me-on-my-toes-sensory-seeking two year old. And a just turned four year old that is a highly demanding momma's girl. Between that and me having a hard time letting Sophie out of my sight, I have been physically and mentally exhausted. It's hard for me to even think beyond what is right in front of me.

But all of that has changed this week. At the end of the day today, it will mark Sophie's first full week back at school. Her energy level is there and so is my comfort level. I know I have said this before but she is just AMAZING. She really is. I am just in awe of her. She is one determined little (umm big...but it's hard for me to accept that she is getting so big) girl.

She remains seizure-free. There isn't a day (or night) that goes by that I am not incredibly grateful for that. A huge weight has been lifted from me. It's hard to even think about my emotional state of mind prior to surgery. Or, actually, prior to finding out that she was a surgical candidate (because the few weeks prior to surgery is a whole other story). I will never be able to find the words to express the heartbreak of having to hold my child every single night while she had a cluster of seizures. It was like clockwork. Usually around midnight and then again around 4am.

My heart still pounds a little faster when I hear her moving around in the middle of the night. Usually, she is just fishing for my hair. Once she finds it, she will fall right back to sleep. Yep...she sleeps with me. But I feel my comfort level growing there too. I think she is ready to sleep in her own bed again. She was a great sleeper until she was 18 months old. That was when the drop seizures started and she would wake up in the middle of the night with bloody lips (even with all the padding I put on her crib). So she started sleeping right smack dab in the middle of Brandon and me. And she stayed there until she was seizure-free after her first surgery (when she was 3.5 years old). Then back to her own bed she went until her seizures relapsed eleven months post-op.

But this time is different. It just has to be. I am once again filled with so much hope. Seizure-freedom seems so real. So permanent. Why not? Right? Miracles do happen.

Home Sweet Home

2011-12-17T23:10:00.000-06:00

We are home. We actually got home late Thursday night. Sorry for the lack of timely updates. Sophie is doing well. She is getting stronger by the day.

Everything has caught up to me and I am just completely exhausted. I am trying to get back into the routine. And with the holidays right around the corner, I have a lot on my To Do list. But I am just soaking in these days...being back at home with my family. I missed Elsa and Charlie a lot. And it feels good to be cuddled up next to Sophie in my own bed (did I mention that I slept 7 straight nights in a hospital bed with Sophie!).

Happy Holidays!

A True Fighter...

2011-12-13T11:59:00.000-06:00

She is doing Ah-May-Zing!!! What a difference a couple of days have made.

Here's a picture just a few hours after surgery on Friday...

Then she slept for the next 3 days...

Physical Therapy and Occupational Therapy came this morning. She was MAD. I had to leave because she kept crying for me. So, of course, I went down to the gift shop to buy her a prize...cute little slipper socks. But, by the time I came back up, she was already in bed looking great. She said "Mommy, I did good". She was so proud of herself. They had her (with support) walk down the halls of the hospital. She is still weak but I know it will only be a matter of time before she gains her strength back.

Looking so awake and alert after therapy...

Do you see that piece of graham cracker she is holding? She is eating and drinking, though we are taking it VERY slowly. She gets a few sips of water an hour and has ate a little over half a graham cracker square.

After therapy, these clowns came by...

She is holding a magic wand in her RIGHT hand and popping bubbles. What a great therapy idea!

I am hopeful that we will be home by the end of the week!!!

Thank you all for your love, support and prayers. It really has lifted me in spirit. You all have been on this journey with us and have been an important part of the healing process. Thank you from the bottom of my heart.

One day at a time...

2011-12-11T20:50:00.001-06:00

The most important thing... Sophie is seizure-free!!! I lost focus of that a few times in the last couple of days. She surprised us coming out of surgery on Friday. She was so awake and alert and thirsty. We tried to take things slowly to make sure she did not get sick. And she did not. She was a little swollen which was to be expected. She was doing amazingly well, all things considered. So I got my hopes up high that she was going to recover quickly this time around. She was already sitting up on her own, talking and drinking. I felt like we were already coasting. She showed a slight weakness on the right side of her body but I know she will regain most (if not all) of it with therapy so I was not all that concerned. She also did not seem to be in any pain. Things were beyond all expectations. But Saturday and Sunday were different. She has been sleeping almost nonstop. Though she was awake but not interactive for a period of time this afternoon. She refuses to take a sip of anything and continues to vomit or dry heave almost every time she sits up. But those things are minor and she will come around.I just need to be patient and focus on the big picture.

Surgery is over!!!

2011-12-09T12:38:00.000-06:00

Dr. Asano and then Dr. Sood came in and talked to us. They both said all went well. They removed the cushion that they planned on and then performed the MST over the entire sensi-motor cortex. When they replaced the grids, they did not see any spiking. Therefore, they did not feel it was necessary to remove any additional tissue which will give her a better chance at preserving the motor function in her right hand. This is GREAT news so far!!! Now it is a "wait and see" game to see how much weakness she has and how much therapy she needs. Just like we wanted Sophie to have lots of seizures to be captured during the grid monitoring, we are also wanting to see weakness immediately after surgery. But we are hoping it will only be temporary and she should regain her strength within two weeks.

Thank you for all your prayers, support and love.

Game Plan

2011-12-09T11:15:00.000-06:00

This is hard. So hard. Because I know she is going to come out with some weakness. I just don't know how much yet. And I do not know how much of it will be permanent. They said to expect her to get frustrated and that she will need the support of her family to get through it. Those are difficult words to hear.

Doesn't she look great?

Plans are different than what we thought they would be before we started this whole process again. Initially, we thought she would just need Multiple Subpial Transection (MST). But the intracranial subdural grids showed a focus. And for a lack of better terms, you can say she has focal hypsarrhythmia in the cushion surrounding the lower bottom half of the motor cortex. So, Dr. Sood is going to resect the cushion on the entire left side of the motor cortex. Then, perform the MST on the entire sensi-motor cortex. They will once again put the subdural grids back on and monitor the brain wave activity. If they are still seeing spiking in the lower half of the motor cortex (which controls the facial muscles), they will then resect that tissue. And then close her up and hope to God that she never has a seizure again.

A7 and A8 represents the cushion surrounding the lower bottom half of the motor cortex.

Speaking of seizures, she has not had a visible one since 11:55am yesterday. Just 3 hours prior to that, they had started her on Fosphenytoin (IV form of Dilantin). Very interesting but that doesn't change the surgery. The focal hypsarrhythmia and spiking still showed on the EEG.

During her left subtotal hemispherectomy (that she had 2.5 years ago), Dr. Sood removed all the tissue in her left hemisphere except the sensi-motor cortex plus one centimeter of tissue (cushion) that surrounds it.

Okay, let me try to explain this in simple terms because I know when I tried to explain it to my family last night, it became confusing to them.

Think of Sophie's sensi-motor cortex as a slice of white bread. Now draw a vertical line down the middle of the piece of bread. The left side of the bread is the motor cortex. The right side of the bread is the sensory cortex. The vertical line is a major artery. The crust that surrounds the slice of bread, that is the cushion. Between the cushion and sensi-motor cortex are small arteries that supply blood to both areas. The closer you get to the sensi-motor cortex, the higher the risk of impairment. Thus, the reason for the cushion.

Now think of taking a scalpel and separating the crust from the white part of the bread without actually removing any of the white part and avoiding all the arteries. Not easy. Now turn the crust of the bread into a squiggly line. Even more difficult. Dr. Sood will be performing this surgery microscopically.

The part of the cushion they are removing is attached to the motor cortex that controls her right hand and right side of the face. Therefore, there will most likely be weakness in this area. But not total loss of control. She will probably lose 20% of the function of her right hand. But she should regain all of her facial muscles because the head is bilaterally controlled by the brain.

I believe this change in plan is good. I *think* it gives her a higher chance of seizure freedom. Even though it does give her a higher risk of motor impairment, the higher chance of seizure freedom outweighs that risk.

Does this all make sense? If not, ask away.

By the way, the first incision was made at 10:40am.

So far, so good.

2011-12-07T22:34:00.000-06:00

Sorry for the lack of updates on my blog. Part 1 of the surgery went well. Grids are placed and she is being monitored. She has woke up a few times and seems to be doing well. Very thirsty but no pain.

She lost a lot of blood and looks really pale. They gave her some blood while in the OR and they are about to give her some more.

She had a big cluster of seizures around 10:20pm, so they will have plenty of data to review tomorrow.

Brandon is taking the night shift and I am getting ready to head back to the hotel.

Day 1 (Take 2)

2011-12-07T10:31:00.000-06:00

Her eyes widen as I carried her into the operating room. The lights were bright. Everything was white except for the few things that were draped in the sterile blue cloths. Everyone was wearing surgical gowns and masks on their face.

It was much harder this time around. To kiss her goodbye. She is much more aware. I could feel the sense of panic in her. As I set her on the operating table, she did not want to lay down but she did. Then came the bubble gum scented mask that would put her to sleep. She fought it hard. Tears started pooling up in her eyes. It broke my heart. I sang her We're Off To See The Wizard as she drifted to sleep. I was hoping she would dream about it while she was under. It is her all time favorite movie. She has watched it so many times that she has most of the movie memorized. Her Grandma Debbie bought her Wizard of Oz puppets and a pop-up book that she treasures. She loves to act out the movie with those puppets almost on a daily basis.

I kissed her goodbye around 9:15am (Eastern time) and surgery started at 10:21am.

Here are pictures from this morning...

Hospital Owl and Hootie along with her own owl shirt.
Can you tell we have a theme going on here!

Reading the Wizard of Oz pop-up book with Daddy.

Thank you all for your love, support, thoughts and prayers. It means the world to us. It warms my heart and soul to know that so many people care.

My beautiful babies...

2011-12-05T08:00:00.000-06:00

I know, I know...they are not babies anymore. But they are mine and I love them so much. They are perfect...each in their own unique way. I am going to miss each and every one of them this week. It breaks my heart just thinking about it. Even though Sophie will never physically be very far away from me, she will just as well be a million miles away when she is in surgery. I love her so much. I know I am making the right decision, even when I doubt myself. She is going to be in trusting hands that will be guided by Him. I know she is going to be alright but it doesn't make it any easier.

Packing sucks!

2011-12-04T14:57:00.000-06:00

We leave tomorrow morning for our trip to Detroit. I am trying to stay strong...for Sophie. And a piece of me is already starting to miss Elsa and Charlie. I hate this. I hate it so much. But the possibilities that this trip may bring...it is worth every moment.

So my current thought...

What do I tell her?

We have told her we are going on a trip to see Dr. Chugani. She knows who he is and she is kind of excited to stay in a hotel. But we haven't told her anything beyond that. Last time around, I didn't worry about this. She wouldn't have understood anyway. But this time? This time is a whole different ballgame. She is so smart.

I mean I have to tell her something. Can you imagine waking up from brain surgery and not knowing what the heck just happened?!?! So I have to prepare her somehow. I just don't know how.

Take Two

2011-11-21T08:00:00.000-06:00

Starting the blog post is sometimes the hardest. I wait so long between postings that I have way too much to say and don't know where to start. But I'll just jump right in.

Sophie is scheduled to have another surgery. Another two-stage brain surgery. In the first stage, they will place the grids to monitor the seizure activity. Then, two days later, they will perform the actual surgery...Multiple Subpial Transection (MST).

I can talk about it so matter-of-factly at times. With no emotions. But the closer we get to the date, the more real it feels. I am starting to feel the weight of it all. I think what scares me the most is how Sophie is going to react to everything. This time around, she is much more aware. But I talked with another mom, Emma, whose son, Alex, had a second surgery when he was 7 years old. She was able to put my mind at ease a bit after hearing how well (relatively speaking) he did the second time around.

But, it is brain surgery. And when I sit down and think about it...really think about it...it is difficult. More difficult this time around than the first. I am already starting to feel the panic. We are leaving in exactly two weeks from today. Just typing that...seeing it in writing...brings tears to my eyes. The packing, organizing and what not of getting ready to go out of town is NOT what is putting me in panic mode. It's the fact that I want to soak up every last second of time I have with Sophie before I have to kiss her sweet little forehead goodbye, once again, before I walk out of the operating room. That moment...when you have to pull yourself away...is the hardest.

Picture perfect...

2011-09-06T11:24:00.000-05:00

She rode the Special Education bus. It's not the bus I had ever envisioned her riding to her first day of kindergarten. Well, at least not before she was born...when all my hopes and dreams for her were of those of typical parents. And then there was a time in my life that I didn't even know if she would go to school. So, riding the Special Education bus is...in fact...a huge milestone for her.

My dreams for her have changed. It was a hard thing to accept. It still is. And it is an ever-changing dream. Because I still don't know what her future holds. It's not that any parent knows what the future holds for their child. But when you have a medically complicated child, there is so much more unknown about the future. Sophie still has daily seizures. They are affecting her.

At least when she was seizure-free, I kind of knew where she stood and where she was going. I knew that she would always be developmentally delayed (she did have the majority of her left hemisphere surgically removed). But she was making tremendous gains.

We have tried a whole list of medications since her latest relapse. Nothing is working. Zonegran did help but the positive effects have worn off. Her seizures are at an all time high since surgery.

Her speech and language are surprisingly amazing. She is incredibly social. And, of course, the most adorable 5 year old girl. So the combination of those three traits...well...she can pull off appearing typical at times. And I am SO GRATEFUL for that. Not for the fact that she can pull off appearing typical but that her speech, language and social skills are at that level. So I am trying my hardest to enjoy these days. The days where she is five, six and maybe even seven years old and her immature personality will still seem that of a typical child of that age. I know I am probably pushing anything past kindergarten since I already see the "hmmm something is not quite right here" look in the eyes of her peers. Because even though she is incredibly social it's not always appropriately social. One of the reasons I loved preschool so much is that it was a mix of three, four and five year olds...so being immature was easier to blend in. I hope that as she grows with the kids in her class that they will just accept her for who she is.

And even though I have accepted who she is, I still do everything I can (when I have the energy) to make sure she lives a well balanced life with just enough therapy but not too much. It's a fine line. And Charlie and Elsa definitely help me with that!

And so does my mother-in-law, Debbie. I can't even begin to list the number of things that she has taught Sophie over the years in such a fun and exciting way. They have an amazingly special bond and she has always been there for Sophie (and me!).

We are living our lives the best we can. She tries our patience to the fullest extent almost on a daily basis. She pushes me over the edge to where I say and do things that I regret so much that it hurts my soul. And at other times, she can make me so proud that I cry tears of pure joy.

The first two weeks of school have been a huge adjustment...for me, for Sophie, for her teachers. But we are all beginning to find our way.

Is it weird that...

2011-04-21T00:21:00.003-05:00

I thought Sophie's little pee-drenched footprints were oh so cute???

It was 5 minutes before midnight. I was in the bathroom brushing my teeth when I heard Sophie coming down the steps. I knew it was her (Elsa had just woke up moments before and already crawled into our bed). But her footsteps sounded a little different (as I hear them every single night right around this time). I knew something was off.

Her pajama pants were soaked.

It has been so long since she has had an accident that I can't even remember. It still makes my heart skip a beat (in a happy way) that she is potty-trained. So proud of her.

Anyway... So Brandon and I cleaned her up and slipped some new pjs on her. And I went on the hunt for the pee spot...thinking it was probably going to be in her bed. Nope. It was those cute little pee-soaked footprints in front of her bathroom door. She tried. Just didn't make it.

(By the way, I just think I am in an extremely good mood tonight because I went to a workshop on ADHD and met a very knowledgeable psychiatrist that is willing to take us on as a new patient even after explaining Sophie's complicated history. Her ADHD has been wearing on me but even more so is trying to find the help/support that we need to deal with this issue. It seems the medical community is more focused on her epilepsy and how complicated and different her case is because of her brain surgery. The psychiatrist did admit that he has not treated anyone like Sophie but that it didn't mean that he wouldn't try his best to help us. See...it doesn't take much to make me happy.)

The flip side...

2011-04-01T11:50:00.001-05:00

Before I continue on with my positive streak (I know one positive post doesn't constitute a positive streak but that is the direction I am going to try to go in), I will update on meds and seizures.

Since Sophie had her third relapse since surgery, we have made the following med changes... Weaned Dilantin. Added Vimpat. Weaned Vimpat. Reintroduced Dilantin. Weaned Depakote. Weaned Dilantin. Added ACTH. Weaned ACTH. Added Prednisone. Added Zonegran. Weaned Prednisone. Added Vigabatrin.

So, currently, she is on 225mg of Zonegran at night and 500mg of Vigabatrin twice a day.

She is tired. She is very wobbly. She is not talking as much.

She is only having one small, very mild cluster in the early morning.

We are waiting to increase Vigabtrin in hopes that some of the side effects will subside. We may have to decrease the Zonegran. And I hope with every last ounce of my being that Vigabatrin will work. Because the next option is to seriously consider surgery. And something as simple as putting on her backpack will no longer be simple. And I cannot bear to go there.

The little things...

2011-03-29T16:14:00.004-05:00

Well, maybe they aren't so little if you had almost HALF OF YOUR BRAIN removed.

But here is my attempt to show you all the amazing things that Sophie can do now. Starting with something as seemingly simple as putting on her own backpack. Though, she does make it look easy...don't ya think?

Make an on-line slideshow at www.OneTrueMedia.com

The 3rd time is NOT a charm*...

2011-03-10T15:37:00.006-06:00

I have written several posts over the last few months. Never to be published. I have so much anger and sadness and guilt with this relapse. It's exhausting and consuming. So I'll update as quickly as possible and hopefully this one will be published.

We tried ACTH. It FAILED.

I was worried that with the wean of ACTH (actually we switched to Prednisone for the wean) that we would see a steady increase in her seizures. And, at first, we did. But once we got to a higher dose of Zonisamide, the intensity and number of seizures within a cluster started to decrease. She is still having around two clusters a day. Small clusters. Very mild clusters. But seizures they are. On a daily basis.

So we are still fighting. We have Vigabatrin in the waiting (just received the package yesterday) along with the ketogenic diet (our appt is in April). We just increased Zonisamide on Monday night so we will give that a chance and see what happens.

On a good note. Actually...a GREAT note. We have seen improvement with Sophie's behavior. There has been a lot going on with medications since surgery. After surgery, she was on Dilantin and Depakote. Since her latest relapse in seizures we have...weaned Dilantin, started and stopped Vimpat, reintroduced and weaned Dilantin, weaned Depakote, started and stopped ACTH, started and stopped Prednisone and started Zonisamide. So right now, she is only on Zonisamide. With all that said, I think Dilantin was making her aggressive. And I think Zonisamide is making her calmer. She has been playing independently. She LOVES her iPad. She has been singing a lot lately. She has become attached to a few possessions and seeks them out. I have never seen her do that before. She has a Dora doll with Boots in a pouch, a magic wand and a music box. She'll put all three items in this little shopping cart and push them around. Or she'll just want to hold them while watching TV. I think this is a huge developmental milestone.

And speaking of milestones...we had her IEP yesterday. I PROMISE to update very soon with all the progress she continues to make (despite having daily seizures).

*This was the third time we have tried ACTH. And this is the third time it has failed. I just knew it was going to work this time. And why not?!?! She has had the majority of her left hemisphere removed...including her left frontal lobe where all the seizures were originating from (according to the grids that were placed prior to the resection). So, I just knew that ACTH would be powerful enough to stop the seizures from this small remaining area that is still active with seizures. I mean...it was powerful enough to make her gain 6 pounds in less than two weeks, have her face puff up with dark circles under her eyes, have wicked mood swings including roid rage, suppress her immune system, lower her potassium level (she had to be put on a supplement) and so much more ugly stuff. All this for the small sum of $130,000 from a company that has HORRIBLE customer service (and I am just talking about this round of ACTH).

What a way to start off the New Year...

2011-01-19T01:05:00.001-06:00

ER visit (via ambulance), overnight video EEG, MRI, gobs of seizures, lots of medication changes and mood swings. All that on top of the normal this time of the year illnesses.

Let's just go straight to the seizures. Sophie had a relapse about 11 months post-op. We increased her Depakote and they immediately stopped. Then she relapsed again 2 months later. We again increased her Depakote and they immediately stopped. (But in the meantime, we scheduled a 24hr video EEG. But, by the time we got in for it, her seizures had stopped so nothing could be recorded on the EEG to determine where the seizures were originating from.)

Then she had her third relapse a few months later (it is now August). So instead of immediately increasing her meds again (hindsight...I believe this was STUPID), we decide to go in for another 24 video EEG to figure out what was really going on. Unfortunately, it took at least 6 weeks to finally get in. And they read absolutely nothing new on the EEG. So I (because I blame myself for everything) wasted all that time doing nothing while she continued to seize EVERY. SINGLE. DAY.

So we decide to wean the Dilantin* and start Vimpat. Seizures became worse. I was in a panic. I did not know what to do. I felt so completely lost. So depressed. So worthless. So helpless. So I turned to Dr. Chugani. We decided that we needed to see him in person to get some direction on what to do next.

*Through all the Depakote increases, her level remained in the mid 30s because of the Dilantin interaction. That's why we weaned it.

Which brings me to 2 weeks ago. A whirlwind of a week. Starting off with the ER visit because Sophie started nonstop trembling at 3am. Something she has never done before. Then we left for Detroit a few days later. Where she vomited at least 4 times in the middle of the night during her EEG. Which almost cancelled her MRI. Luckily, everything worked out and we completed all the testing and met with Dr. Chugani.

He got straight to the point. She was having seizures that originated in the left central region (the motor cortex on the side of the brain she had surgery...the only remaining tissue on that side). Since there was a focus we could opt for another surgery.

Hold up. Wait. Huh? What? Slow down. Breathe.

He did back up and say that we should try a few medications first. With surgery, it's like the brain resets itself. So we are able to go back and try medications that she originally failed. Because maybe those medications were controlling the seizures originating in the left central region but not the ones that were originating in the areas of the brain that was removed. So maybe this time around it would be different. Makes sense.

She is having Infantile Spasms (I hate that name...sounds way too mild). So we need to start over with the front line treatment for Infantile Spasms.

ACTH.

Which, at this point, sounds better than surgery. But it still makes the room spin and makes me want to vomit.

F**K.

That's what I'm thinking. This is f**cked up. You remove almost half her brain and it is not enough for those f**king seizures. They (seizures) want more. Well, they can't have more. She's had enough of her brain removed. ENOUGH. I feel so superficial for wanting to hold on to that little strip of brain. SO SUPERFICIAL. Because if it was any other area...I'd say take it. Which I did...they already have. This is all that is remaining.

So we decided not to jump onto the ACTH bandwagon just yet. We weaned the Vimpat and added back the Dilantin and reduced the Depakote. Wishful thinking really. It worked once. Maybe it will work again. We will see. We have the rest of this week to give it a chance. But our local neuro is already getting things started on the ACTH. It won't be so easy to administer this time around. She's 5 years old. She's 46 inches tall. She weighs 47 pounds. She is strong. Not so easy to inject her with a big ole needle in her thigh twice a day. It's not a quick easy poke.

So that's where we are at. We have to be very aggressive. We are fortunate the seizures have not yet spread to the right side of the brain which would be detrimental to her learning and development. So, if the ACTH fails, then we will try Vigabatrin. And if Vigabatrin fails, then...most likely...surgery.

But, I have to add... I DO NOT EVER REGRET Sophie having the first (and hopefully only) surgery. NEVER. Her developmental gain has been more than worth it. She is amazing. And she continues to amaze us. There isn't a day that goes by where I am just in awe of her. Her speech and language is so rich. And her memory is so clear. She talks in complete sentences about things that have happened months ago.

I am holding on to the hope that I do not have to put her through any more pain. I just don't know if my heart can take it. Did I mention that we are also in the midst of all the paperwork and testing for her to transition to kindergarten in the fall?!?!

Another blood draw...

2011-01-14T23:30:00.003-06:00

I hate the night before Sophie has to get her blood drawn. Because I know what I have to do the moment she wakes up...get her dressed and out the door before she starts demanding food. Then the moment she sees the chair, I have to try my hardest to keep her calm. Then the moment from when they start checking out her veins, I have to use every muscle in my body to keep her screaming, fighting, thrashing body still enough so they can draw her blood. All the while, trying to keep my emotions in check because I am heartbroken in the inside seeing the tears just pour out of her eyes and the snot running down her face. Because this is how much she HATES getting her blood drawn.

But NOT today.

Today was different.

Today was blogworthy.

Today started off as usual. I told her she had to go bye-bye with mommy. I didn't tell her where we were going. No need to unless she asked. And she was just happy to be going somewhere. So we pulled into the hospital parking lot. She was excited to get out of her carseat. As we are walking down the hall, she seems to recognize the place. She said to me "we going to see the doctor". I said "yes" which actually did not turn out to be a lie (this is the same building her neuro is in which we ended up running into). We got to the outpatient laboratory and I signed us in. She said "where's the doctor". I said "we have to wait until they call our name". So they called us back and as I was giving them our insurance information, she recognized the chair. She looked at me with the saddest eyes and said "I get shot". I said "yes you are...I am so sorry baby girl". So as we walk toward the chair, she hesitates. Her face is full of worry. I pick her up and tell her it is going to be okay. She sits on my lap and I put my arms around her. They take her arm and tie the band around it. She is remaining calm. As they stick her with the needle, she screams out and flinches. But no tears and she is calm. I tell her to sit really still so they can finish quickly. And she does. She is sitting there watching the entire thing. She says to me "all done". I say "not yet, there is one more vial to go after this (they are collecting four)". They switch out to the last vial and she says "band-aid". I tell her "yes they will give you a band-aid". They finish and she is okay...a little hesitant but still very calm. She picks out a sucker and we are on our way out.

I tell her how proud I am of her.

And she says "I brave".

So proud of myself...

2010-11-19T10:00:00.000-06:00

(Note: I actually wrote this post on Tuesday night but I did not want to publish it until Brandon got back in town.)

It was right before bedtime and I was trying to get Sophie to make a beeline up the steps. As I yelled out for Elsa and Charlie to come join us, Elsa yells back "uh oh mommy...I made a mess".

I knew it was going to be a long day. And in the moment that I woke up that morning...I made a decision that I would try with all my might to hold it together.

It started off as a fairly typical day. But it was not a typical evening. I was on my own, as Brandon is out of town for the week.

So after dinner, I round up the kids and get them in the bath (which is what Brandon normally does). Things are going amazingly well. I get Elsa out of the bath, lotion her up, put on her PJs and blow dry her hair. I do the same for Charlie. As I got Sophie out of the bath, Elsa and Charlie ran out of the room to go play. I do the same for Sophie as I did for Elsa. Usually, Sophie does NOT like the hair dryer and runs off after a few seconds. But not tonight. She sat on the bathroom counter and let me dry every last strand of hair. In the meantime, my head is in la la land as I am thinking about how proud I am of myself at how well I am doing on my own...without Brandon here...and things are going pretty damn smoothly.

Let me just say...Sophie's behavioral issues can and do physically and emotionally drain every last ounce of energy and patience that I have on a daily basis. And it is fairly typical for any stay-at-home-mom to count down the seconds until reinforcement arrives...right?!?! Which is what I usually do. And the minute Brandon walks through the door, I feel like everything is going to be okay. Like I made it through another day even though the day isn't over yet. Like there is NO WAY I could have lasted a second longer without breaking down (though I have to admit there are the days where chaos ensues and Brandon walks through the door to find me a heaping mess).

So, back to the "uh-oh". As I round the corner, I find Elsa and Charlie standing in the middle of this...

Which I had just steam mopped earlier that day!!!

I drop to the ground and just start bawling. I canNOT deal with this right now. I WAS in the home stretch. I WAS going to get all the kids upstairs and shut the gate. Thirty minutes of play time and then I would sneak downstairs to get toothbrushes and Sophie's meds. And then they would all be in bed before the end of the hour. Nope...not now. I pull it together. I strip off Elsa's and Charlie's pajamas and put them back in the bathtub. Which means Sophie is now ripping off her pajamas because there is no way she was going to be excluded (she will try to take a bath or shower, at minimum, five times a day). UGH!!! But...somehow...someway...they are all sleeping at this very moment.

(Update: And I survived the week. Thanks to the endless amount of patience and love from Grandma Debbie!!!)

Quite the imagination?

2010-10-25T13:06:00.004-05:00

I was decompressing somewhere in the house. Brandon was giving all the little kids a bath. Sophie was screaming her head off. Which is very UNusual for her. She loves bath time. She is constantly trying to find a way to take a bath or shower several times a day. But things have been off lately...ever since we started weaning the Dilantin.

I should of helped. But I was too tired. Besides, it was only a few minutes later that Brandon had Sophie out of the bath and wrapped into a towel. It was my turn to take over so he could finish up the other two still in the bath.

So I took her to her most favorite place in the house. My bed. Between the position of the room (in relation to the sun) and having the blinds closed, it is usually fairly dark in the room. It is a place I take her to several times a day when she is in sensory overload.

She immediately calmed down and smiled at me.

So I asked her... Why were you crying?

She replied... I was scared.

Scared of what?

A raccoon!

A raccoon?

Yes! It was at the front door.

It was at the front door?

It smell me.

At first, I thought...what book are they reading at school. Now I am wondering if it was a hallucination seizure. That thought just entered my head as I was typing this post. Maybe because I had just read this article.

EEG results...

2010-10-19T13:07:00.000-05:00

We met with the neurologist the morning following the hookup. It is the hospital's procedure to go over the findings and to be sure we got all the data we need before they disconnect. Of course we did, since she has these "movements" every single day. Usually, she has several of these episodes in a 24 hour period.

There was no consistency in the EEG pattern with these movements. But, they believe the movements look like seizures so they believe they are seizures. They believe that the scalp EEG is not able to pick them up. In the remaining tissue in her left hemisphere, she continues to have intermittent spiking when she is awake and frequent spiking when she is sleeping.

She is currently on Dilantin and Depakote. It is a good combination to be on coming out of surgery because they work through different channels in the brain. But the Dilantin speeds up the metabolism of Depakote, so we were never able to get her Depakote level to a therapeutic dose. With each relapse, we increased the Depakote which would temporarily solve the problem. So we are taking a different approach this time. We are weaning the Dilantin in hopes that it will increase her Depakote level and stop the seizures.

We are currently weaning Dilantin with no relief in seizures. In fact, they are more intense. I now have no doubt...they are definitely seizures and they are getting worse. I am not sure what to do. Either her brain needs the Dilantin -or- she is having withdrawal seizures that will eventually stabilize. In the past, EVERY SINGLE TIME we have weaned an anti-epileptic drug (AED), she had withdrawal seizures. Even if the drug did NOTHING to stop the seizures she was currently having.

So, we will play the "wait and see" game and hope the past holds true. I really do not want to add another AED. Dr. Chugani suggested Vimpat. That is one she has never tried so it's time to do my research.

Our Day in Pictures...

2010-10-13T10:48:00.000-05:00

Happy 5th Birthday and 24 hour video EEG...

Holding her favorite sticker book (thanks Grandma).
If your child loves Sesame Street, I highly recommend this.
She is learning lots from this book.

No...she wasn't this happy.
I asked her to smile and she obliged.
But not one tear was shed.
We were able to easily distract her.
Especially with her birthday present she got moments before...an iPad.

A birthday sign she had made at school.

Her incredible nurse decorated her door with the Happy Birthday letters.

Aunt Diane came by for a visit and gave her some fun books to read.

The hospital (along with a gift bag put together from a local girl scout troop) gave her birthday presents and balloons.

She has never before been interested in birthday presents.
But she ripped right into these!!!

Sophie's nurse and someone from Child Life Services.

Uncle Jason brought Sophie her favorite meal (chicken caesar salad from Panera).

Sophie's beloved Grandma came and stayed the day with her.
There is no one in the world that she loves more.

Singing Happy Birthday to her.
She pretended to blow out candles.
Too cute!!!

She had some fun with the icing on her cookie cake.

Uncle Jake came by for a visit and brought her a fun birthday present.

Daddy and Sophie.

Video Clip...

2010-10-03T14:42:00.004-05:00

Because I am seriously slacking on posting.

Because someone asked me if I am done blogging.

Because I just cannot find the right words.

So here is a video* for you all to see just how well Sophie is doing. Especially when you compare it to this video from a year ago (where I am requesting her to say words compared to actually having an on-going conversation with her now).

*I hope her chewing food doesn't distract you from the video. This is when her concentration and stillness levels are at their highest.

Awe-inspiring moment...

2010-06-24T09:56:00.003-05:00

A year ago, Sophie could barely talk. And, if it was not for the fact that she had almost half of her brain removed, she most likely would not be talking today. Her days would most likely be filled with seizures and her regression would be more evident.

Which brings me to yesterday afternoon. When I picked Sophie up from school. She told me she worked for skittles today...blue ones. But when I told her I did not think there were any blue skittles. She paused and said purple.

It sounded true. But I just had to double check. And this is the e-mail I just got from her teacher...

She did want to work for skittles and she wanted blue ones, I told her there are not any blue so then she said purple!!!! I am so excited that she remembered. She is such a smart girlie!!

She is remembering the details from her day AND sharing them with me. Simply AMAZING!!! She is talking in complete sentences. On average, 5 to 6 words but sometimes up to 8 to 10. My favorite is when she says...I want more cheetos PLEASE. As if shouting "please" makes it all better ;) Gotta love her.

Survey says...

2010-06-17T17:46:00.003-05:00

No change. EEG looks the same as it did 6 months ago. But it is actually worse than what I thought it was*. After the neurologist explained the findings, I was surprised to hear how much spiking she was having. So she went back and compared this one to the last one. They look the same. She has some spiking from the left central region when she is awake. She may go 30 minutes with nothing and then a few spikes. But the spiking is almost constant when she is asleep.

*I was under the impression she was only having rare, intermittent spiking.

A Nice Surprise

2010-06-16T15:04:00.009-05:00

The EEG hookup went AMAZINGLY well. Not one tear shed!!! I am not sure how that is possible. Sophie has had over a dozen EEGs (I have lost count) and she has NEVER done that well. Not even close. The one she had six months ago, she almost vomited from crying so hard. This is a true sign of her development. We were able to talk her through it and reason with her.

She sat on Brandon's lap while holding her baby dolls*. We explained everything to her that was about to happen. We let her touch and feel all the things they were going to use on her. She kept saying "hurt" in the saddest voice. But we kept reassuring her that it would not. There were several times where she almost lost it but we were able to calm her down before that happened. I think it was also very helpful that she was simultaneously doing everything to her baby dolls that they were doing to her. Maybe she felt in control of the situation. I wish they sold EEG play kits (kind of like a doctor's kit).

Once we got back to her room, she kept wanting to leave and did not want to wear the backpack. So we resorted to letting her munch on all her favorite snacks since she was not interested in ANY of the distractions I brought. Finally, we put in a CD her teacher from school gave her. That got her excited. It is such a cute CD and she immediately recognized the songs. She knew the movements and even sang along to some of the words to a few of the songs.

She also LOVED when the doctors came in to check her out. She sat so still as they examined her. And when they (there were quite a few) would leave she would say "doctor come back". Have I told you how much she loves playing pretend with her doctor's kit at home and at school...it is one of her favorite toys.

She then ate a great lunch and now she is sleeping peacefully with her Daddy cuddled up right next to her. Child Life just came by and is getting together some toys for us. So hopefully, between my bag of tricks and the "new" toys, she will be distracted enough.

Thank you Uncle Jake for the yummy cookies and stopping by for a visit. Thank you Grandma Debbie for also visiting and watching the little ones for us. Brandon and I were able to have a nice lunch outside at one of my favorite restaurants down the street from the hospital.

*My sweet little 2 year old Elsa ran and got her beloved Dora doll for Sophie to take to the hospital with her when she found out Sophie had to stay the night in the hospital. And we also brought along baby Chou Chou...her favorite.

Look at that sweet, innocent face just moments after being hooked up. No bright red eyes. No tear stained cheeks. Just my sweet, little angel of a girl. All that stress...worrying...knots in the stomach...sleepless night...guilt...all for nothing. Thank goodness!!!

Guilt

2010-06-15T17:46:00.005-05:00

That is what motivated my shopping trip today. Causing me to buy 3 bag full of goodies for Sophie. New toys, puzzles, DVDs and her favorite snacks are what filled those bags.

Because those bright red, tear-filled eyes are already haunting me. They are already breaking my heart.

Tomorrow, she goes in for a 24 to 48 hour EEG. Most likely 24 hours but they threw in the 48 hours for "just in case". She HATES getting the leads glued to her head. HATES it. HATES it. HATES it. It is pure torture for her. You should see the fit she throws for me when I want to brush her hair. Her short little bob cut with no tangles hair. She is very sensitive to people* messing with her head...as you can only imagine given her history. Because I still flinch when her mouth comes close to my arm in remembrance of her biting sprees. So I can only imagine the nightmares that must flash through her mind. They still flash through mine.

We are going in because she had been doing some "odd movements" that look eerily familiar. We upped her medication twice and things are looking much better. But we still have to know what is going on.

* Except for her 8 year old cousin Colin. In which, she would do ANYTHING for him...brush her teeth, lay still during diaper changes, brush her hair, take her medicine, etc. She absolutely adores everything and anything he does. He is the coolest person in the world to her. Colin can you please hop on a plane and be here by 8:30am tomorrow?

An irresistible sharing moment

2010-06-10T10:33:00.005-05:00

Here is one of Sophie's latest miracle moments...

As Sophie was sitting on the couch with one of her baby dolls, she had a two-sided conversation with her baby doll that went like this...

Sophie: Hi baby.

Sophie (talking for the baby): What is your name?

Sophie: Sophie. What is your name?

Sophie (talking for the baby): Baby.

I did not see it. But Brandon did. And I made him tell me the story over and over and over again. Sophie is going through another one of her developmental growth spurts. I wish I was on a reality TV show so that every little magical moment could be captured on film. Or maybe not, because with Sophie, every little magical moment comes with a not so...um...magical moment. Because as soon as Brandon turned his head to share the wonderful news, she decided to kick him where it hurts most on a male.

And continues...

2010-05-26T00:18:00.006-05:00

My last post was about how it all started. And now I will continue on.

That night I was on edge after she fell asleep. Since I thought it was all related to breathing issues, I thought maybe she would stop breathing in the middle of the night. So I turned the baby monitor as loud as it could go so I could actually hear her every breath...what an incredibly sweet sound.

And then it happened again. That same sound she made during the first "episode". So I ran into her room and peeked into her crib. She was doing the exact same movements. I picked her up and she fell back asleep on my shoulder.

The following morning, she did almost the exact same thing. Except this time, she was sitting in her highchair and her arms came in instead of flying out. So I called the pediatrician and we got in to see her that evening. I showed her the videotape of the episode from earlier that day and she said she would call the neurologist's office in the morning.

I honestly thought it was nothing. I was so optimistic. She had been completely healthy up to this point. She was hitting the milestones. See...I was an optimistic person in life before all this. I always felt that things had a way of working out. But, this...what happened in the next few days...has forever changed me.

We got in to see the neurologist the next evening (by now it is Tuesday). She had a few more episodes by then. I gave him the whole history and showed him the videotape. He told us to come back first thing tomorrow morning for an EEG.

Still, no panic. None. Still optimistic. Everything was going to be just fine.

Well, moments after the EEG, our world came crashing down. I could not breathe. I could not stand. I could not stop crying. I just wanted to die. We were told that our sweet, precious, little baby girl has Infantile Spasms. That we were to immediately take her to the hospital in which they were going to run a series of test. We were told that she had a 70% chance of being mentally retarded. We were told that we (Brandon and I) would have to give our daughter daily injections, in which, a side effect is...DEATH. All this information in a matter of minutes.

We pulled ourselves together just enough to drive to the hospital. She had another EEG, blood drawn (the beginning of genetic testing), spinal tap, MRI and began the ACTH treatment.

Because of the side effects of ACTH, she went from looking like this...

May 13, 2006 (just 2 days after her first injection)

May 15, 2006

To looking like this...

July 4, 2006 (In the middle of weaning ACTH)

These are hard pictures to look at. Brings back too many painful memories (or I should say nightmares). ACTH did not work. So we began the journey of working our way through a long list of anti-epileptic drugs and alternative treatments that failed, one after another. In which we were told that with each failed medication, our chances for seizure freedom was slim, if not impossible. And that there was nothing else we could do for our daughter. That there will be a time that the seizures will overcome her body and she will start regressing.

October 23, 2006 (About 3 months after ACTH. Back to looking like her old self.)

The only DOCTOR that ever gave us the option for surgery was Dr. Chugani. I say "doctor" because it was another mom (a mom whose son had surgery) that told us about Dr. Chugani. Because a MAJORITY of neurologist do not believe that those with Infantile Spasms are surgical candidates. Because their EEGs are too chaotic. With Infantile Spasms, there is CONSTANT electrical discharges occurring. Can you imagine your brain never being at peace?!?! But Dr. Chugani along with Dr. Sood and Dr. Asano (the surgical team) see beyond that. They see the potential these children have. They take the risk.

So one year ago today (May 26, 2009), the surgical process began. Grids were placed to monitor the seizure activity and map the areas to be removed. I am reliving it...VIVIDLY. I think I am finally letting those emotions surface. Because I went numb. I went into survival mode. I was 32 weeks pregnant. I had a 16 month old baby girl back home (about 575 miles away).

It is hard for me to deal with these emotions now. Because I want to repress them. I do not want to think about them. Surgery was a nightmare miracle (as Danielle puts it). It has brought so much pain and joy in my life. I am so grateful for it but I hate (and it eats me up inside) that she had to go through that to get where she is today.

And now there is another little girl who is about to enter this world...the brain surgery world. Please keep her in your thoughts and prayers.

So the story begins...

2010-05-07T12:04:00.009-05:00

I have been flooded with raw emotions lately. So much has happened in the month of May over the years. So much is happening now. And it is consuming me. Flashbacks of the past are haunting me. Flashbacks of seizures and surgeries...all the pain and suffering she has been through over the years. I cannot stop thinking about it. I am struggling. I am fighting back the tears. I am overwhelmed with guilt. I want to go back in time and fight harder (for so many different things on so many different levels) because I have learned from my mistakes. But, with everything in life, it is not until you live through it that you know better. But because it was my child suffering, I cannot help but blame myself.

I VIVIDLY remember Sophie's first cluster of jackknife seizures. It was May 7, 2006.

We went to visit my sister and her family at their condo on the lake only a few hours away from where we lived. It was Sunday and we were getting ready to leave in a few hours. Erin and I along with Sophie stayed behind while the rest of the bunch went fishing on the boat docks. Sophie had a little bit of a stuffy nose. As I laid her on the ground, she did some odd "movements". Her arms went out and her eyes slightly rolled back. She made this odd noise through her nose. I thought it was strange. And then she did it again. And again. And again. Maybe 8 times.

I picked her up and she fell asleep on my shoulder.I looked over at my sister and asked her what she thought. She did not know what to make of it. I do not know why the following words came out of my mouth. I have never seen or knew of a person who had a seizure. But I asked her if she thought it was a seizure.

Initially, I blew it off. I became preoccupied with packing things up. But once we got home, I could not stop thinking about it. So I called the pediatrician's after hour service. They said that she was probably having a hard time breathing since she was stuffy. So that was that.

To be...

2010-04-28T22:06:00.003-05:00

So free. So innocent. That you would start dancing to your favorite song* the second you hear it. No matter where you are at or who is watching.

*Sophie instantly fell in love with the Black Eyed Peas performing Boom Boom Pow on American Idol. We had it saved on our DVR for almost a year before it somehow got deleted. Thank goodness for YouTube.

EAT

2010-04-26T14:03:00.002-05:00

About 2 weeks ago, Sophie started Equine-Assisted Therapy. We almost did not get in. She was at the top of the wait list and we got a spot at the very last minute. But only for the first session which is 7 weeks long.

Sophie is waiting anxiously to get on a horse.

Without even looking back, she grabs the complete stranger's hand and walks through the gate towards the horses.

Once they got her situated on top of the horse, she turned around and said "bye mommy". Absolutely no fear. No hesitation. Just pure joy.

Here she is holding onto the reins. Looking like such a big girl.

They do activities throughout the lesson.
Like put your hands on your helmet.

Or put the rings on the stick.

These were pictures from Sophie's first lesson. On our way home from this lesson, Sophie almost said the ABCs in entirety. She usually says ABCDE and then gets distracted. But this time, she said A through T. Then later that night, she finished T through Z.

Every day since then, she asks to "ride Scout" (the name of her horse). She is so very proud and loves to show everyone the pictures I printed off for her. It is an amazing form of therapy. Most of the people that work with this program are volunteers. Each rider must have three people with them at all times. One to lead the horse and two side walkers. They do a lot of fundraising events to help subsidize the cost. And if you absolutely cannot afford it, then they request that you put in some volunteer hours instead. (In other words, I highly recommend looking into this program wherever you may live.)

I am hoping that this will help with Sophie's ability to focus for longer periods of time. I am unwillingly (currently) to put her on any ADHD medications. I am trying to find some kind of alternative approach.

Therapy has always worked for Sophie. She retains the information. She just has issues with getting it to show. First it was the daily seizures. All that knowledge that she retained in the three years she received therapy through Early Intervention and preschool just came pouring out after surgery. It just proves how important therapy is even when you are not sure if the child is learning or retaining any of that information. It is absolutely amazing to watch her cognitive development take off. On the other hand, her lack of ability to focus is preventing her from showing us her full potential. So, hopefully, equine-assisted therapy will be another form of therapy that will help supplement what she is learning in school.

I think if Sophie could express it in words, she would tell us she wanted to move to a horse ranch and ride in wide open fields all day long. Because in her second lesson, she stood up in the stirrups and started bouncing up and down as to try to make the horse go faster. Here is a video from her first lesson...

The sweeter moments...

2010-03-04T23:41:00.001-06:00

EACH and EVERY day I am amazed at something that Sophie does. Amazed. It fills my heart with happiness and patience. And it gets me through the more challenging moments of the day.

I was NOT looking forward to today. Sophie had to stay home from school. I was to be alone with all 3 kids. And if you REALLY know Sophie, if you have spent a long period of time with her in her normal home environment without the distraction of being able to have one-on-one attention from an adult, then you would know how hard this can be. But I am not going to get into that in this post. This post is about the sweeter moments.

And there was no sweeter moment than 12:10pm today.

Charlie had just fell asleep and I put him in his crib. I needed to make lunch and the kitchen was still a mess from breakfast. So, I got Sophie and Elsa cozied up on some blankets on the floor in front of the TV. Dora was on. Their new favorite. I picked up the dishes from the table and started rinsing them off in the sink. A few minutes later, Sophie came up to me saying "look, look". As I looked over at her, she was half naked, holding...

A POT FULL OF PEE!!!

I immediately swept her up and danced around and sang songs of praises. Her face was lit up. She was so proud of herself. I was so proud of her. We called grandma and daddy and even her teacher at school. I could hardly contain myself. This is the FIRST time that she has ever done this. There has been just a handful of times that if you sat her on the potty at just the right time or entertained her long enough, she would go. But this was the first time she had ever done it ALL. BY. HERSELF.

Just in case you don't realize the whole thought process that she had to go through, I will recap it for you.... She had to not only understand that she needed to go but to hold it. A huge concept if you really think about it. Because it is not something I can explain to her or show her. Then, she had to shift her focus from watching TV, decide to use the potty, walk over to the next room to use the little potty, take off her big girl undies*, and sit down and go. Hooray for Sophie!!!

*Sophie has a diaper rash so I used baby gates to close off the part of the house with hardwood floors, rolled up the rug and put big girl undies on her to let things air out. I kept reinforcing the fact that she was wearing them and not wearing a diaper.

Here are some random pics...

The other night, while we were eating dinner, Elsa decided to sit on Sophie's lap. We have a rule that no one is allowed to sit on anyone's lap while eating dinner. Because things were getting out of control with climbing in and out of laps and demanding this and that and blah, blah, blah. So, once Elsa was rejected by me, Brandon and Grandma Debbie, she decided to try Sophie who willingly let her on up.

Charlie fell asleep in between bites.
Going...

Going...

Gone.

By the way, Charlie is doing incredible. He is cruising furniture and crawling all over the place (including up the steps...which I learned the hard way). He is still just a super laid back baby and can easily entertain himself.

One last thing. Sophie never made it in the potty again today. But she did pee on a paper plate that was lying on the floor that she was playing with earlier today. And she was very proud of herself. She said "peepee...yeah" and when we asked "where" she led us in the opposite direction of the potty to the paper plate. She was so excited. I wanted to be really excited for her but at the same time I did not want to encourage her to find random objects to pee on. Oh, this is going to be interesting. I am going to try to keep up with it through the weekend and see where it goes.

New insurance...

2010-03-03T13:23:00.004-06:00

Means new headaches. And trust me...I am very grateful that I have insurance. I still have the insurance statements rolling in from Sophie's brain surgery and I am very fortunate to NOT have to pay all the charges STILL going through.

Our new insurance covers therapy. Sophie's physical therapy went through just fine. But her speech therapy was rejected with the following note...

Charges for speech therapy are covered only when the speech therapy is expected to restore speech function or correct a speech impairment resulting from non-chronic conditions, acute illnesses and injuries, or gross anatomical defect present at birth. Based on the information provided, this charge is for speech therapy which does not meet this coverage requirement.

I have put in one phone call so far with no answers. I am still planning on making a few more later this afternoon. But just wondering if anyone else has gone through this. I am not sure if epilepsy or brain surgery falls within the above category.

Great Wolf Lodge...

2010-02-21T23:11:00.001-06:00

Last weekend, we packed up the whole family and drove almost 4 hours to Great Wolf Lodge in Kansas City. Well, I guess it wasn't the whole family. We left Charlie with my parents (thanks mom and dad) and took along Grandma Debbie (actually, she took us). We met up with a bunch of aunts, uncles and cousins. I am lucky to have married into such a large, wonderful and super-loving extended family.

Haley enjoyed catching up with her cousins and racing down all of the waterslides. It was hard to catch a picture of them but I made them stop for just a moment so that I could snap a pic.

Elsa had fun lounging around. Especially in the kid-friendly hot tub. She is not very adventurous. Okay, she is the complete opposite. She loved to be held and didn't want to go down any slides. I am wondering if her feet ever touched the ground?!?!

Sophie, on the other hand, is quite the adventurous one. She went down EVERY single waterslide and had a blast doing so. It took me until Day 3 to let her go down the last 2 that she had not tried (they were partially enclosed slides that she had to go down by herself). And she loved them. She had a HUGE smile on her face at the bottom of each and every single ride she went down.

Great Wolf Lodge has to be the MOST kid-friendly place that I have ever been to. From wearing our pjs to breakfast to the bedtime story telling in the cozy lobby to the magic shows and dance parties to so much more. You never had to leave the building and there was enough entertainment to keep the kids busy even outside the waterpark.

It was Valentine's Day weekend and they brought out a huge tub of heart shaped sugar cookies, icing and sprinkles for everyone to decorate.

Though it doesn't look like it in this picture, Sophie loved Wiley (the bear) and Elsa was scared out of her mind (but she can't resist cheesing it up for a picture).

One HUGE bonus from this trip... We got to meet Kylie, Jody and Matt. I will never be able to express in words what it is like to meet another family that has fought through Infantile Spasms. It is a bond like no other. Kylie is one adorable little girl and her parents are two of the sweetest and most genuine people I have ever met. They are doing an AMAZING job at raising Kylie. It was such an honor to meet this cozy little family.

(Jody, Me, Elsa, Kylie, Brandon, Sophie and Matt)

(Sophie giving one of her famous smash my face into you hugs.)

Thank you Debbie for this wonderful and memorable vacation!!!
I needed this...a break from reality...a time to just focus on the family...I had SO MUCH fun.

Snow Day...

2010-02-09T11:03:00.005-06:00

Thank GOD for Grandma Debbie. What would I do without her?!?! Here I am sitting in my nice, warm, cozy house drinking my morning (finally) cup of coffee and she is outside with the bundled up* girls...pulling them around on a sled and shoveling snow.

I hate the cold. Hate it. And I love my girls and all but I just draw the line there. The few minutes I was out there was enough for me. School was called off today. We got 4 inches. Probably does seem like much in other parts of the country (I know because I use to live in Connecticut).

So I am very grateful that Grandma Debbie was here because the girls had a blast (Charlie is sleeping) and I captured some beautiful pictures.

* Thanks Erin for leaving all your boy's snow gear behind when you moved to San Deigo!!! The snow suit fit Sophie perfectly and both the girls were able to fit into a pair of boots.

Charlie, Charlie...

2010-02-07T04:50:00.000-06:00

He's our man.
If he can't do it, no one can.

That's a little chant we say sometimes. Except, Sophie likes the version that ends in "...we'll throw him in a garbage can".

And he is literally our little man. Just check out these pictures...

On the very day he was born, Brandon nicknamed him Button (after Benjamin Button). Especially when he had a little wrinkled forehead. Everyone that meets him, thinks he looks like a little man. I agree. His name fits him perfectly.

Charlie is 7 months old today. He is babbling (says dadadadada), army crawling all over the place, pulling to a high kneel, transitioning to the sitting position, working on perfecting the pincer grasp, eating soft regular foods and likes to dance. He loves to play with the Little People Happy Sounds Home for long periods of time (he likes to open and close the refrigerator door and toilet lid). He is much amused by his sisters and loves to be in the mix of it. He is a great baby. Very laid back and happy.

And he had his first (and hopefully last) EEG on Wednesday. He was freaking me out with some crazy head bobbing. It started a little over a week ago. And he was doing it consistently every day and various times throughout the day. This was the same age Sophie started with her head drops. Except I didn't think they were anything until she had her first jackknife seizure 3 weeks later.

I tried to ignore the odd movements he was making. Because they were more like head bobs rather than head drops. But my heart just couldn't take it anymore. So I called Sophie's neuro on Tuesday and they got us in the next day! He had a one hour EEG and then we met with the neuro immediately after (we weren't suppose to have an official appt for another week but his other patient didn't show up). He looked over the EEG and said it was NORMAL!!! He did a full exam and everything looked great. I know that is a lot to go through for some piece of mind but it was definitely worth it. Because I was driving myself nuts.

Here are some random pictures over the past couple of months...

Happy 2nd Birthday...

2010-01-22T09:33:00.001-06:00

To my messy,

Rock star,

Sweet,

Silly,

Smart,

Loving,

Funny,

Birthday Girl, Elsa.

From the very beginning, she was always on the go. Learning at a pace that has always amazed me. She has a heart that is full of love and forgiveness. She is passionate and strong-willed. She is my helper, my snuggler, my milk addict. I love her with all of my heart.

She is so incredibly smart. She can already recite her ABCs and count to 15. She can sing the words to entire songs and has the words to certain books memorized. She knows all her colors and shapes. She can put on her own clothes, socks and shoes...the right way (she knows the tag goes in back and which shoe goes on what foot).

She is my mischievous, sly and agile girl. She loves to climb up on everything so much that I had to put safety locks on my kitchen cabinets above my counters. She gets a certain twinkle in her eye when she is about to do something wrong and loves to push the limits.

She has a bond with Sophie that is so heart-warmingly strong. She forgives Sophie quickly through all her stages of aggression. At times, they have huge belly-laughing fun moments. At other times, they cuddle up and sleep next to each other. At other times, they are beating each other up (even though Sophie is twice her size, she can hold her own).

From the moment she wakes up in the morning, she has to account for everyone in the family (Daddy work, Charlie sleeping, Sophie at school). When it is just the two of us hanging out during the day, she is the first to hear Charlie's cry when he wakes up from a nap and insists that I go get him right away. She loves to feed him his bottle and always makes sure he has a bib.

She is mostly potty-trained and INSISTS on running around naked all day long. She has a love-hate relationship with clothes. She loves to pick out what to wear but hates to wear them unless I threaten to leave her at home unless she gets dressed.

Her sippy cup of milk is her lovey. She screams for it whenever she is tired or hurt. If I let her, she could probably drink a gallon of whole milk a day. And yet, she remains my little peanut. She is so tiny that she makes Charlie look big.

She loves to help me with everything and always has to know what I am doing every second of the day. She is practically glued to me at times. I love taking her out and about with me. She makes running on errands fun. She has such a huge personality on her.

She has somehow inherited my slight OCD behavior. If she gets a drop of liquid on her clothes, they must come off immediately (maybe just another ploy to get naked) no matter where we are. She is very particular about certain things and notices the tiniest details. Like a little paper tag hanging off the edge of her new Memory game card MUST come off.

She LOVES her baby dolls and does everything with them. It is fun watching the way she interacts with them. She is so gentle and caring and loving.

She goes to preschool two mornings a week and her teachers refer to her as the other teacher. She is always concerned that everyone is taken care of and loves to clean up the toys.

Happy 2nd Birthday my dear sweet Elsa. I hope you have a wonderful day.

Post-op Detroit visit...

2010-01-15T11:00:00.000-06:00

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.

I'm back...

2010-01-11T09:43:00.002-06:00

It's 9:43am on Monday morning. I have exactly 1 hour and 42 minutes of freedom.

I'm sitting at Starbucks, enjoying a latte*, and kid-free! Sophie and Elsa are at preschool and my mom is watching Charlie. I decided updating my blog was more important than buying groceries**.

Monday mornings is "me" time. The only time in the entire week where I can sneak off without an agenda in mind. I'm not allowed to come home until after I pick up Elsa. So I do whatever my heart desires. And today it is this very much neglected blog.

Sorry for taking so long to update. It has been chaotic. Especially with Sophie and Elsa off for winter break. I have been overwhelmed. Things are starting to return to my new normal.

My new normal. That is what has thrown me off these last 7 months. My world has been rocked. I had a very hard time readjusting to my new life. Although it is a better life, change is hard for me. Sophie is a COMPLETELY different person. Of course, I don't miss the seizures. But, at times, I miss my old Sophie. The one that I grew to love and cherish for a little over 3 1/2 years. But I have the new and improved Sophie. The one that remains seizure-free. The one that is TALKING. Actually talking. Not just labeling objects or people. But actually using words without being prompted. All kinds of words. Hundreds and hundreds of words. On a daily basis, I am amazed at the new words I hear that I have no idea how she has learned them. On top of all of that, she is consistently stringing three words together. Like "open the door" or "more snack please".

Then there was the birth of Charlie exactly one month on the day of coming home from the hospital with Sophie. No further explanation needed on how that changes the family dynamics.

So, I'm back. Ready to do a lot of updating. Starting with our last visit to Detroit. It has been a very emotional time. I will try to take you through it all. But I am in a good place right now. Meaning "right now". As I try to take each day as it comes. And the scale has finally tipped in my favor...it seems my good moments in a day are outweighing the exhausted, frustrated moments.

* I am "enjoying" a non-fat, no whip, mocha latte...trying to lose that baby weight. And, yes, I realize drinking a latte, no matter how you make it, isn't part of a diet plan. But I have to cut corners somewhere.

** Going to the grocery store is kind of a joke. Thanks to my INCREDIBLE mother-in-law. More on that later.

We're home.

2009-11-19T11:07:00.002-06:00

And all I have the energy to say right now is...

Can it really be this exhausting??? I am emotionally and physically drained.

A little bit of this...

2009-11-15T23:02:00.000-06:00

And a little bit of that.

Just to warn you...this post is going to be random.

Tomorrow morning we leave for Detroit for Sophie's post-op follow-up appointments. We meet with Dr. Sood (neurosurgeon) on Monday. MRI on Tuesday. And we meet with Dr. Chugani on Wednesday. This is a good visit. A fun visit. We get to tell everyone how WONDERFUL Sophie is doing. That she remains SEIZURE FREE!!! That we had a great weekend. That the behavioral issues seem to be getting better. A LOT BETTER. That Brandon and I compared Sophie to developmental charts and believe she has gained an ENTIRE YEAR in the last 5 1/2 months since surgery. We get to say thank you for NOT taking the easy route. Because Sophie's case was a risk. A risk that a lot of neuros would not take. But my words will fail to truly express my gratitude. But I think they will know. Just by spending a few moments with Sophie.

So...YES...the behavioral issues are subsiding. We (me, Brandon, Debbie, the entire staff that works with Sophie at school) have worked hard to find some sort of method to try to get her to understand the consequences to her action. I think she is finally getting it. HOORAY!!!

And the development...WOW!!! Her vocabulary has gone from maybe around 75 words pre-op to more than 300 words. And she uses them ALL DAY LONG. Even though she had 75 words prior to surgery, she wasn't using them on a consistent basis. You would hear a word here or there. And they were very basic words. Mostly labeling. She didn't really use them to communicate. She is now putting 2 words together on a consistent basis. She knows all the names of her classmates and teachers and will say "hi (insert name)" spontaneously.

We increased her Depakote two weeks ago. She is now on 4ml three times a day. Depakote is also a mood stabilizer. Hmmm...I wonder if this has helped with her behavioral issues because the two events just so happen to coincide. She is also still on Dilantin (1.6ml two times a day). And that is it. No other meds.

Halloween...I never did elaborate on why it was such a wonderful day. I cannot describe in words how much fun we had on Halloween. Sophie got it. This was THE FIRST holiday (or any special occasion) that she understood. She had a death grip on her basket. Once we went to the first few houses, she was ready to trick-or-treat around the whole neighborhood. At one point, she had dropped her basket and her candy spilled out. She looked up at me and said "uh-oh all gone". I picked it all up and she was happy as could be. When prompted, she said "tic-a-tic" and "thank you". But other than that, she did everything on her own. She held her basket out when people offered her candy and then she would turn around and start walking to the next house. Or if they told her to take some candy, she would just take one or two pieces and put them in her basket. The only time she got upset was when we went home.

Extreme highs, extreme lows...

2009-11-03T11:01:00.003-06:00

And everything in between. That is me on a daily basis. My emotions are all over the place. It is hard to deal with. It is hard for me to separate my mood from Sophie. We are so intertwined. So much of what she is feeling at the moment dictates what I am feeling at the moment.

Lately, the extreme lows is what constitutes my day. With a little mix of extreme highs and everything in between. Because Sophie has been doing some amazing things. But we are still dealing with a lot of behavioral issues. And you just never know what you are going to get at any SECOND of the day. And it consumes me. It sucks all the energy out of me. It leaves me in a place that I hate being in. Because I want to focus on the positive. The fact that she remains seizure-free. I don't want to take that for granted. Not for one second. Not ever. And I don't want to take for granted the huge developmental gains she is making. But it is hard to concentrate on it when these behavioral issues literally smack you right in the face.

Though, I have to say, it seems we are at another upswing. Things seem to be getting better. We had a great day on Halloween. The best day I think we have had since Sophie was diagnosed when she was 6 months old. But the last time I thought that we were on an upswing, we ended up crashing again. So, I guess you can say, I am optimistically cautious. Because it is a lot for the heart to deal with. To go from one extreme to the next on a daily basis

**I have written so many posts in the last couple of weeks. Or at least attempted to. But I have never had the guts to click "publish post". And I am having second thoughts now. I am not sure why. I really haven't said much. I am getting myself worked up over nothing. So here goes.

Why is this still happening?

2009-10-26T22:08:00.009-05:00

Quinn never made it to the hospital today because her parent's insurance has yet to approve the treatment of ACTH.

I am speechless.

Outraged.

At how a child could be sitting at home suffering with seizures without treatment in hand because of insurance issues.

Because Questor decided to charge over $25,000 per vial for ACTH. In which it takes an average of 5 vials per treatment. Yes, that is right. It will cost over $125,000 for a treatment that is not even guaranteed to work. A treatment that only a few years ago cost around $12,000 in TOTAL.

So please click here and show this family your support. I am sure they could probably use it right about now

And to read more about how Questor keeps parents and caregivers waiting on the edge of their seat to find out if ACTH will be their child's miracle drug click here.

More than I let myself believe...

2009-10-19T08:47:00.008-05:00

So we got the preliminary results of the EEG. The news was not perfect. But it was pretty darn close. Amazing considering we are less than 5 months post-op. Though I could only dream of a perfect EEG, I truly do not know if that is possible. That is a great question I will have to follow up with Dr. Chugani. Not that it could ever be completely normal since almost half her brain was removed. But I wonder what the best case scenario is for her now.

There was a neurologist from our local children's hospital that followed Sophie's care while we were in-patient. He came by on Thursday to get her complete history and then came by after he read the EEG on Friday. There were also a few residents that came by to get her history. Everyone seemed quite interested in her case and I am more than willing to share the knowledge I have gained over the last 3 years to anyone who is willing to listen.

So the results are...

Sophie's right hemisphere looks healthy and there was NO SPIKING on the right hemisphere!!! There was SOME spiking near the motor cortex on the left hemisphere. SOME is so much better than CONSTANT. It is unknown whether it is truly coming from the motor cortex or tissue surrounding the motor cortex that was disconnected. I am not sure if we will ever know.

A bit of history...

During Sophie's grid surgery, through a burr hole on the right side, a strip of grids were placed to monitor her right hemisphere. They were concerned about her right hemisphere because there was an area of concern that showed up on the PET scan. Her EEGs always showed constant spiking on both hemispheres. And since her EEGs were constantly chaotic, they were unable to tell where her seizures were originating. That is until the subdural grid monitoring. Those results showed spiking on the right hemisphere but no seizures originating from the right hemisphere.

There was a big question going into surgery. Since there was constant spiking on her left motor cortex, we did not know if they were going to remove it, perform the MST on it or leave it alone. After the other areas of her brain were removed, there was no spiking on her motor cortex so they did absolutely nothing to it. Which is amazing considering the amount of spiking there was.

All in all...

I am so incredibly grateful that her right side is normal but a bit surprised about the spiking on the left. Honestly, I really do not know what the expectations were post-op besides controlling any possible break-through seizures with meds. I cannot wait to get Dr. Chugani's thoughts on all of this.

Dr. Chugani should have the recording by Wednesday. I am quite tempted to hop on a plane to Detroit right now and stand by his side (or Dr. Asano) and have them explain to me what they are actually seeing on the screen. If I only had my own personal EEG interpreter. I have read this and I am tempted to buy this or this. Because I have many of Sophie's prior EEGs along with her latest EEG saved on my hard drive. So if any of you white coatless moms or dads have found anything you would recommend, please let me know.

How beautiful does this clean sheet of paper look???

Chilling out with Daddy.

Getting ready to get the markers out with Mommy.

Thanks Aunt Cindy and Aunt Diane for visiting.

This sink height was way too perfect...EEK. We went through 3 outfit changes before I finally figured out to put the tray table in front of it. Though, I initially let her play in it for about 30 minutes. Any chance of getting electrocuted?

Snuggling up with NaNaw.

Having a blast coloring.

A fun visit with Red Robin.

Yet another EEG...

2009-10-14T21:54:00.000-05:00

The med game continues. Except we are on the other side. Before we were always trying to find the right combo to stop the seizures. Now we are trying to find the right dose to make sure they don't come back. Trust me...I realize what side I want to be on. But the thought of a 24 video EEG has my stomach all in knots. Especially dealing with all of Sophie's behavioral issues. So I am nervous about her getting hooked up...tomorrow morning at our local children's hospital.

After the grid surgery, Sophie was put on Dilantin and Depakote. We had issues getting her levels up while we were in the hospital. They did quite a few boluses. They eventually got the levels up to the lower end of the therapeutic range. We got her blood drawn two months after surgery. They were really low. Dilantin was 1.3 (therapeutic range is between 10 - 20). Depakote was 26 (therapeutic range is between 50 - 100). So I e-mailed Dr. Chugani and he suggested we increase the Depakote and check levels again in six weeks. So we did. Dilantin stayed the same and Depakote increased a measly 4 points. So I e-mailed Dr. Chugani again and he suggested that Sophie get a 24 hour video EEG before making any more med changes.

I know it is only one night in the hospital. Seems like nothing compared to brain surgery. But I am still stressed. I not only have to think about myself and Sophie but there is also Elsa and Charlie. I am also anxious to see what her EEG is going to look like. Is it too much to hope for a clean EEG? She has never had a clean EEG. They were always constantly chaotic. I do not even know if it is possible to have a clean EEG after getting almost half her brain removed.

By the way, if anyone in the area wants to come by and say hi, give us a call on our cellphones.

Pumpkin Patch...

2009-10-13T21:32:00.000-05:00

It was a gorgeous day and a spur of the moment decision. I am so glad we went.

Sophie and Elsa both had swim lessons that morning. Haley had dance practice. Afterwards, we all headed over to the toy store to pick out some birthday presents for Sophie and out to lunch. Once we got home, Sophie was unbearable. Moody, crabby, clingy, mischievous...just exhausting. We were already exhausted. It would have been nice to just come home and chill out for a few minutes. But with Sophie, she is always on the go. So we loaded all the kids up in the car and headed off to the local pumpkin patch. And we had a blast. For the first time, Sophie was...hmmm trying to find the right word...manageable. She was not doing her normal out of control behavior things like rolling around on the ground or grabbing at strangers or trying to stick her fingers in other kid's mouths. By the way, gotta love the chewy tube.

We have moments like this...where Sophie is manageable. They are few and far between. But when we get them...ahhhhh...I just soak them up.

H1N1

2009-10-13T12:50:00.001-05:00

Please share any thoughts on whether to get the H1N1 vaccine and whether it matters if it is the nasal mist or shot. Thanks.

Happy 4th Birthday...

2009-10-11T22:56:00.006-05:00

Four years ago today, at 1:13pm, my sweet Charlotte Sophia was born. She was named Charlotte after Brandon's father. I was due on his birthday...what are the odds??? She was nicknamed Sophie by her big sister, Haley, and the name has stuck ever since.

It has been an incredible four years. It has had more twist and turns than I ever could have imagined.

She is an amazing little girl. With more strength and determination than I could ever muster up. Trust me...she has tested it out on me many times and won!!!

I love her with all of my heart. Her smile lights up my world. Her meltdowns crush me.

It is hard parenting a special needs child. Harder than I could ever imagine. But the rewards are greater than I could have ever dreamt of.

She continues to make strides developmentally. She gallops everywhere she goes. So adorable. She could only be going 5 feet but she will gallop to get there. It's fun for her. Something new.

Her new words are "air conditioner" and "watching you". After her surgery, sudden noises would scare her. The sound of the air conditioner coming on or the toilet flushing or the very faint beep at the end of the cycle on the washer or the automatic ice machine in the refrigerator. When she hears these noises, she gets a panic look on her face and jumps into the closest lap. It is getting better, as she is starting to understand what these noises are.

She will repeat a lot of words you ask her to except "I want" or "more ____". I will start going through the list of words she knows and she will repeat them. Does not hesitate. And then I ask her to say "I want". Complete silence. Does not even attempt to say it. I will even try to break it down by asking her to repeat just "I" or "want" by itself...refuses. But she has spontaneously put two separate words together. She does say two word combos like "air conditioner" or "watching you" or "thank you" or "all done". But these words are always said together. So what I am referring to is two separate words that make sense but not something I always say together. Like "mommy happy". I have no idea where she got that from. Just said it to me one day. She also said "I good" after getting in trouble at school one day. These are HUGE breakthroughs. I am so proud of her. I have no doubt that her language will continue to get stronger with time.

I love you my sweet baby girl. Happy 4th Birthday.

Charles Henry Coleman, The Original

2009-10-06T21:34:00.005-05:00

Charles Henry Coleman II, turned 3 months old today. This is also the birthday of my (Brandon) father who passed away on September 4, 2001. He has been gone for over 8 years, which was 24 years longer than was expected. Shortly after my brother and I were born, my father was told that he had developed a rare form of cancer for his age or any age and that the survival rate was very low. I think often, not necessarily about the sadness of missing him (although that feeling will always be present) but rather about how different my life would have been if he wouldn't have fought and survived...what it would have been like without being raised by the greatest man I ever knew and will ever know. I never talk about him, with anyone really. As I just wrote that, I am not sure why. This year I didn't realize that I forgot about the anniversary of his passing until the day after...and I think he would have wanted it that way. He would have wanted us to remember all of the good years, which is what he told us when we sat by his side a month before he passed away. He told us that he was so blessed for the "extra" years he gained.

I started this post above yesterday and still can't think of what to say. I read father's day cards that I wrote, a paper from 5th grade on who I most admire, letters to him when I was away at 8th grade camp, and some poem I wrote him with what appears to be a calligraphy pen and flower decals (is it possible that I am gay?...not that there is anything wrong with that). Although it was good reflection and tears, it did not lead to any inspiration in what to write. Or it did and I still choose to keep those feelings to myself.

So, I will keep it short. I can see my father already in Charlie. He is the perfect completion to the family. Charlie, you have a big name to live up to and I can't wait to tell you all about him. Love you dad.

Brandon

Trevor's Hope

2009-10-05T23:11:00.001-05:00

I can't quite find the words right now. I am emotionally drained. But if you are following my story then I don't need to tell you how big of a day it is tomorrow for Trevy and his family.

Trevy is in Detroit. He is having the two-part brain surgery.

Please keep him and his family in your thoughts and prayers.

Infantile Spasms Awareness...

2009-09-24T13:28:00.003-05:00

Reposted with permission from Danielle...the super sexy, awe-inspiring, soon to join the "my son had brain surgery" group mom that advocates with all her heart on behalf of Infantile Spasms and her most adorable son, Trevor.

on raising awareness

Once upon a time...

In a land far away...

Where seizures were in remission and life was not so draining. There lived a mommy with fight in her heart. This mommy...together with her family...made a very special journey. At the request of a very important woman...who also hosts the heart of an advocate. That was how it came to be that the mommy testified on Capitol Hill against the tyrant Questcor...and their criminal abuse of the Orphan Drug Act.

See, a few months prior to the mommy's son being ensnared by the Seizure Monster...Questcor amplified the price of their drug. The front line drug. The drug indicated in the rescuing of her infant son from the Beast. Acthar gel. Over the course of a handful of days...Acthar's price point was increased from approximately $1200 a vial to $25,000 a vial. And it did not halt there. Today it can cost upwards of 30k per 5 ml vial. Most infants require a course of at least 4 vials.

Suddenly the mommy...seizure saturated son in her arms...was thrust fully into the war that rages between hospitals...insurance companies...drug corporations...and families holding broken children. Her insurance company initially denied coverage. The saga was intense for nearly a week as her son's neurologist went to battle beside her...writing scathing letters on behalf of the seizing baby boy.

In the end...they won that battle. And her son received treatment. Which helped for a time. But despite a price tag which could buy a decent family home even here in New England...Acthar is not a cure. Although it is one of the very very slim "chances" our babies of Infantile Spasms have to escape the Monster. If even for a time.

Which the mommy's son did. He was Seizure Free for a much too short spell. But the rage against the price-gouging tyrant did not lessen after the battle was won. It intensified. Posts were written. A few press corp attempted to tip the scales of right versus wrong. Capital Hill testimonies before Joint Economic Committees were passionately delivered. Interviews for books and even prominent televised news programs were given...although sadly most of those fell by the way side. Because, I suppose, she had no relation to Hollywood. But the mommy...whose advocate blood runs deep...continued to work together with other parents to increase awareness. To buck the system. To be the squeaky wheel and be heard.

But then on a different devastating day the seizure free time ran out. And day to day life became so altogether draining that the mommy had no energy left for advocating. It was all used up caring for her son. Who although injected with over a quarter of a million dollars worth of Acthar was not cured. But rather assaulted by 100s of seizures daily yet again. Because although I have shared this narrative in the framework of a fairy tale. It is anything but. And two weeks from this very day my beautiful little boy will be lying in a hospital bed. Wires protruding from his cranium. Connected to the Beast inside his skull. While we anxiously wait for the dawn of the following day. When doctors will preform what is closest to a real cure for seizures that we have at this time in history. Radical brain surgery. The removal of most of my little boy's left hemisphere. And pray to God...the Seizure Monster with it.

Quite possibly for a cost less than that of the Acthar gel with which he was injected. And proved not to be a cure. Though it may cost the same.

How ironic that Questcor...along with the Child Neurology Foundation...would be hosting an Infantile Spasms Awareness Week during the very month that Trevor (whose mommy once testified before the JEC against the tyrant Questcor) will be wheeled into a surgical room. Where the Seizure Monster their drug could not cure will be removed at last.

Also ironic that Don Bailey, CEO Questcor, with whom I have shared dialogue via email a time or two would not make me "aware" of their attempt at increasing awareness. Nor any other advocate parents with whom I am connected. In fact, I know of at least one parent who contacted Questcor in hopes of gaining an agenda for when this proposed awareness would be taking place...only to be directed to the Child Neurology Foundation. Who really had no clear answer.

Speaking of which...while monitoring my sitemeter I noticed someone from CNF spent hours combing my site. My silly hopeful heart. She actually entertained the thought that I'd shortly receive an email. And yet there has been no olive branch offered from that direction either.

Which leaves me wondering why?

Why would you not reach out to the parents whom you are cognizant have a passionate desire to increase awareness?

Perhaps it is not at all about increasing awareness? And I have no doubt my suggestion would not be remotely appreciated.

I certainly agree with Marissa's Dad that increasing awareness would best happen among those not already intimate with the disease. The pediatricians for instance. The educators who think every seizure is a grand mal. And such. Yet it is our understanding that this so-called IS Awareness Week will take place amongst neurologists. Whom I dare-say should have a solid level of awareness already. Which no doubt will be divulged over platters of fruit and cheese.

Which brings me to my own suggestion?

If Questcor (who makes very ambitious claims regarding the efficacy of their Acthar gel) truly stands behind their drug as a cure? If they truly boast a deep seeded desire to provide awareness for the families suffering this very rare and unknown disease.

I think an ingenious way to create a buzz would be to do something truly dramatic. Truly generous. Truly grounded in the belief that their drug is more than effective...but rather a cure...80% of the time.

I submit to you...short of decreasing the cost of their drug to bring it more in-line with other rare disease treatments...

Why not offer a reimbursement program to those who trial their drug and find it not to be a cure after all?

If Acthar fails - Questcor will reimburse

It's not a super sexy slogan. May I remind you that my creative energy levels are running on fumes as I prepare for my son to endure radical brain surgery.

Call me crazy, but I do believe that would generate some awareness.

Turning the corner...

2009-09-22T14:06:00.002-05:00

...And there is a big wide open field. No wall. Sophie's behavioral issues are getting better and we have seen a spurt in her development. Especially this weekend.

So as the weekend unfolded and the blogworthy news kept building, I knew I just had to take the time to sit down and type it out...as quickly as possible because the clock just ticks way too fast during the day.

It all started Saturday morning. I was watching Sophie from the sidelines in her second swim lesson. The instructor, Sara, put a floating device around Sophie's waist and got her into the water. As Sara was holding Sophie, she told her to hold on to the edge of the pool and then she let go of her. And she held on!!! Just like that. She understood. In that moment, she looked so old. So...dare I say...typical. Just a 3 year old, holding on to the edge of the pool, chilling out. By the way, I will definitely remember my camera next week.

But it didn't stop there. She told Sophie to close her eyes. She did. Squeezed them so tightly together...too cute. She told Sophie to put her nose in the water. She did. She told Sophie to kick her legs. She did.

I was so proud of her that I had to fight back the tears!!!

Then came dinner time. Brandon went to the baseball game so it was just me, Sophie, Elsa, Charlie and Grandma Debbie (aka NaNaw). We decided to be brave and go out to dinner. Taking Elsa and Charlie...easy. But when you add Sophie to the mix...well nothing short of EXHAUSTING. But we were up for the challenge.

And Sophie did great. The I'm so proud, I could cry moment was when she dipped a piece of fish in tartar sauce. First of all, she requested dip by saying "dip, dip, dip". She learned that from Elsa. Elsa LOVES dip and will eat almost anything if you dip it in something. But it wasn't the requesting as much as the action. It was such a controlled and purposeful movement. She delicately dipped the edge of a piece of fish and then popped it into her mouth. In that moment, she looked so...typical (I don't like using that word but I don't know how else to describe it). Not that she looks so typical to the outside world...sitting in a highchair that looks way too small for her while obsessively blowing raspberries in the air and of course her very cute do*.

*Once, a waitress took one look at Sophie and made the comment...it looks like someone got a hold of the scissors.

There is more...

Late Sunday morning, Sophie said "dough dough" out of the blue. So I said, if you want to get a doughnut, you have to put your shoes on**. Getting a doughnut is a treat in our house. Occasionally, we will take the kids to the doughnut shop and go to the park. So she walked out of the family room, through the kitchen and grabbed a shoe out of the back closet and brought it to me. Usually, Sophie gets distracted in these situations and never quite makes it to where she initially plans on going. So for her to make it somewhere AND come back is huge. Most of the time, I continuously verbally redirect her or hold her hand in order to get her to follow through. And half the time, this doesn't even work because she will have a meltdown in the midst of it all. This time, there was no redirecting her since I really did not feel like taking her...it was raining outside and she just finished eating a big breakfast. But I was too proud of her to not follow through. Well...actually...Brandon took both her and Elsa.

**She hates wearing her shoes. You can't blame her. Who wants to wear hard plastic orthotics all day long. Just not comfy. But necessary.

There were more of these moments. I just can't think right now. All in all, it was a refreshing weekend. Something I have been longing for. And it could not have come at a better time. With all that was going on with Julia this weekend. I hope this good news gives this family hope. That Julia's surgery will be a success. That her parents will soon be blogging about their I'm so proud, I could cry moments. Please keep this family in your thoughts as Julia is in her last few moments of surgery.

Nothing but love, hugs and warm thoughts sent to you...sweet Julia.

The sweeter side...

2009-09-15T21:21:00.002-05:00

Note: I wrote this late Sunday night and was interrupted by a screaming Elsa that I had to get back to sleep before I could publish. So "Today" refers to Sunday.

Today was a good day. Sophie and I had a moment. Where we totally connected. Where she was focused. Where she was calm. Actually, it was more than a moment...more like 15 minutes.

Elsa and Charlie were napping. Haley was on the computer. Brandon was playing hockey. Perfect setup to do some much needed one-on-one bonding time with Sophie.

Lately, it has been very hard for me to get Sophie to have some down time. She is constantly on the go. I miss cuddling with her. She was so cuddly and snuggly pre-op. Even post-op for awhile. But when the behavioral issues were kicked into high gear, the sweet cuddly Sophie disappeared. She just could not sit still.

Until today.

We snuggled in bed together...sharing a pillow...laying face to face. I asked her to point to my nose. She did. I asked her to point to your nose. She did. That is a new thing she has learned recently...the meaning of my and your. So we went through all the facial features. She not only pointed to all of them but she said them all too. My heart was beaming with joy. To have this moment. Then we had a little conversation, that went a little like this...

Sophie: Daddy?

Me: Daddy play hockey.

Sophie: Hockey.

Me: Daddy hockey.

Sophie: Hockey.

Me: Daddy hockey.

This went back and forth a few more times. We are working really hard to get her to put two words together, so sometimes we speak in very short phrases.

Sophie: Bock?

Me: Big Rock upstairs.

Bock is Big Rock Candy Mountain DVD that we usually play on a little TV we have in my room but we moved all of that upstairs into their room where Elsa was currently sleeping. This conversation also went back and forth a few more times.

Sophie: Night Night.

Me (singing my made up Night Night song): Night Night Sophie. Night Night Elsa.

Sophie: Row Row.

Me (singing Row, Row, Row Your Boat): Row, Row, Row Your Boat.

Sophie: Night Night.

Me (singing): Night, Night...

Sophie: Row Row.

Me (singing): Row, Row...

This went back and forth quite a few more times. With a HUGE smile on Sophie's face. And even a BIGGER smile on my face. See...our nighttime routine begins with reading books. Then I turn off the lights and lay in bed with Sophie and Elsa and start singing the Night Night song. Elsa, not wanting to go to sleep just yet, will immediately cut me off and starts demanding (in her cute sort of way) another song. Once I start singing another song, she immediately cuts me off again and demands another song. Usually, it goes back and forth between Night Night, Row Row and Monkey (5 Silly Monkey Swinging in the Tree). I humor her a few times and then I say "last song" which she inevitably requests Night Night and they both fall asleep. Well, this was the first time Sophie has ever played this "game" with me. She is getting "it". She is starting to understand things on a deeper level. Simply amazing!!!

Well, our bonding time ended when she started obsessively poking me in the eyes and then went on to obsessively slapping herself in the mouth with the palm of her hand with her tongue hanging out.

But it left my heart full of happiness. Her eyes would light up and she would get all excited every time she knew I understood what she was saying. I am so proud of her. And these moments are what get me through the not so proud moments I have with her. Which I will post about soon...her behavioral issues.

But in the meantime, here's a video of Sophie and Elsa being silly one night right before bedtime. Sophie keeps saying hand throughout the video because she wants to hold Elsa's hand.

Sweet Julia...

2009-09-14T00:27:00.005-05:00

Through the wonderful world of the internet, the paths of so many journeys are crossed. This time it is the journey of sweet little Julia. I met her mother, Lisa, about a month ago. She stumbled upon my blog through a link on Ken's blog, Blogzilly. Julia is scheduled for the two part brain surgery that is very similar to Sophie's. The grid surgery is scheduled for September 18th and the resection surgery is scheduled for September 22nd at Children's Hospital of Michigan with Dr. Chugani's team.

My thoughts go out to this family as I know all too well the emotions they must be going through right now. Please keep them in your thoughts and prayers.

You can follow their story on their blog page Daniel and Julia.

The adorable little Julia...

Bear with me...

2009-09-10T11:25:00.003-05:00

I am trying HARD to sort through my thoughts and feelings. Life is not as bliss as I thought it would be post-op. So many emotions. So many issues. So many things that I wish not to talk about because there is too much guilt wrapped up into it. But I am not being honest with myself. It is what it is and I am trying to push the guilt aside. Because I have to. For Sophie. I have to deal with these issues and stop pretending they are temporary. Because it has been more than 3 months post-op.

She remains seizure-free. Again, I never know how to write that. When I type it and see it written before me...it looks like a simple statement. But it is so much more than that.

Before Sophie's subtotal hemispherectomy, these were my thoughts... If we could just stop the seizures and focus just on development, life would be great. We just have to get through this surgery successfully. Everything here on out will be manageable. WRONG.

And that is where the guilt lies. Because if I were to complain about her post-op issues, it would seem like I do not appreciate the fact that she is seizure-free. But I do. More than ever. So for this post, I am going to try hard to put the guilt aside and be honest. Because these things need to be said. I'm scared, though. I'm scared these words will someday haunt me. Because if her seizures were to ever return, these things I am about to write about will be trivial.

Deep breath, here I go...

Sophie is out of control. Everything I do with her feels like a monumental task. Every...little...thing. I try so hard to be patient with her. Because I realize there is a lot going on in her brain right now that she is unable to comprehend. That I am unable to comprehend.

Her behavioral issues are such that we added 12 hours of ABA therapy to preschool. That is why she goes a full day. Her pediatrician talked to me about the possibility of needing to put her on an ADHD drug in the future. Dr. Chugani suggested maybe putting her on a behavioral med called Risperdal. None of which any of us are ready to do at this moment...just something to think about. I will discuss all of this in length with Dr. Chugani at her follow up visit in 3 months.

The magnitude of her behavioral issues are hard to explain. Each little act may not seem significant. But it is the fact that it is one act after another after another.

I am so glad that she was in preschool for almost a full year prior to surgery. Because her teachers and therapists know what she was capable of before surgery. They are a great support system for me.

Now her behavioral issues are not to be confused with her development. Because she continues to make stride developmentally. The number of words she is able to say increases by the day. Her awareness of her surroundings continue to increase. Her sense of humor amazes me.

Please, please, please don't think I am not grateful for all that she has overcome in these last 3 months. I DO appreciate it. I AM grateful for it. And I am sorry to those who I may have offended for complaining about things that seem so trivial.

A quickie...

2009-09-03T22:17:00.010-05:00

I am taking the approach that a quick post is better than no post at all. Sophie remains seizure free. I write it so matter-of-factly but I truly want to scream it for the world to hear...especially to those doctors that said she would not be a surgical candidate.

August 30th marked her 3 month seizure free anniversary. One that I am too scared to celebrate. Too scared to get too comfortable.

Sophie started school 3 weeks ago. She goes full day Monday through Thursday. That is a whole different post that I will hopefully write about soon (among many other topics). In the meantime, here are some random pictures...

No...not another EEG.
I had to wrap her head at night to stop her from picking at her suture site. She would pick and pick and pick which caused it to bleed and bleed and bleed. For weeks on end, Sophie slept in-between us with one of us semi-sleeping so we could stop her from picking. Because even with this nice looking head-wrap, she was still able to get to it. It is finally almost healed.

First day of preschool. This was the best picture I could find. She was in a daze when I started snapping away.

First day riding the bus (3 days after school started). She rides the bus to school and then I pick her up after school. She is the last stop and the school is only a mile away so she is only on it for 5 minutes...the guilty part of me felt the need to say that. She cried the first day or two but she happily gets on the bus now.

Elsa's first day of preschool. And yes...this is also the best picture I could find. Why are my kids in such a daze on their first day of school once I get the camera out???

Sophie getting a much needed sensory fix. She loves to rub her inner arm up and down stubbly chins. She will actually go up to a complete stranger and do this.

Bennett...

2009-08-27T06:07:00.005-05:00

I write this post this morning with knots in my stomach and tears in my eyes. It is a very important day for a special little boy. Most of you that read this blog probably already know who Bennett is. But for those of you that don't...he is having BRAIN SURGERY today.

He is having a temporal lobectomy to hopefully stop his seizures AND to find out whether he has a brain tumor. As if waiting to find out if this surgery will stop his seizures is not enough, his parents will also have to wait on the pathology report to find out if their son has cancer.

Bennett...I love you with all my heart. I will be thinking about you all day today and for the days to come. Your smile could melt anyone's heart. You are a very precious little boy and you have many, many people thinking about you and praying for you today.

To follow his story, click here.

Elsa and Charlie...

2009-08-13T00:39:00.005-05:00

Charlie is 5 weeks old. Already!!! Life has been crazy. Time has been flying by...though it doesn't feel like it around 6pm when Sophie and Elsa are having meltdowns.

Today, Charlie had his 1 month checkup with the pediatrician. He now weighs 10 pounds 14 ounces and is 22 1/2 inches long (both 75% on the charts). He is hitting all the milestones. While he is on his belly, he can turn his head from side to side and he can even lift it up for a few seconds. He is making great eye contact and likes to smile. Today, he even cooed for me. Melted my heart. He is also grasping for toys that hang over his head.

Elsa had her 18 month checkup. She now weighs 21 pounds 4 oz and is 31 inches long (my peanut). She not only hit all the 18 month milestones but also a lot of the 2 year milestones. She says over 100 words. She is putting 2 words together. She can count to 10. She runs...REALLY fast...to escape from Sophie. She is my mischievous little girl. She has eyes that are so expressive that she can get away with about anything. She pushes the limit. She imitates EVERYTHING Sophie does...especially right after I tell Sophie to stop doing what she is doing at the moment. She loves shoes. She will go into the closet and dig through a pile of shoes to find the exact pair that she wants to wear. She is almost potty-trained. She tries to do everything on her own and will have a complete meltdown if you even attempt to help her. She is mommy's little helper. If she sees a dirty diaper laying around (with 3 kids in diapers there is bound to be a dirty diaper laying around somewhere), she will pick it up and throw it away in the trashcan. When I am unloading the dishwasher, she stands on her stepstool to reach everything off the top rack so she can hand it to me. Speaking of stepstools, she carries one around to give her the boost she needs to climb up on about anything. She can do puzzles and shapesorters. She can twist the cap off of ANYTHING. She knows what belongs to everyone...points to an object and says "DaDa's" or "Sophie's". She LOVES Sophie and is very concerned about her. She forgives Sophie very easily when Sophie hits or bites her. If Sophie goes to time-out, Elsa gets a sad look on her face and will keep repeating "Soph, Soph, Soph" until I get her out. She has a huge heart, a contagious laugh and she absolutely cracks me up.

Sweet Voice...

2009-08-07T06:19:00.006-05:00

Here are a few words that I was able to capture on video. It was right after she woke up and she was in a really good mood. A time, not that long ago, we would have instead been cuddled up on the couch because the seizure monster would have taken over. Sophie always woke up happy but it was only moments later that a cluster of seizures would wipe her out. That I would have to hold her in my arms until she regained her strength back to face the day. I cannot even begin to imagine what it must have felt like to start EVERY SINGLE DAY like that for OVER 3 YEARS. To have your brain in an electrical storm so bad that it takes over your entire body and drains all your energy. I treasure a lot of moments but now I especially treasure the moments right after she wakes up because they are no longer stolen from us.

Happy...

2009-08-02T12:30:00.002-05:00

There is so much to say but I can't seem to motivate myself to update the blog. Not that I don't have MANY wonderful things to say...it's just that my mind is mush nowadays. Everytime I sit down at the computer, I stare at a blank screen and my fingers don't seem to move. So I'll try to update as much as I can right now while I feel somewhat coherent.

I'll start off by saying Sophie remains SEIZURE FREE!!! It has been 2 months and 3 days!!! Her development has really taken off. She is doing so much more than I would have ever expected. Both physically and cognitively. I had no idea that her physical development would take off too. She is hopping and running. Her gait is much more steady and normal. When she came out of physical therapy last week, she ran to me. Really ran to me. It wasn't her usual head down, knees locked, funky little run. She looked straight at me and ran by lifting her feet off the ground and bending her knees. My heart about bursted out of my chest with excitement. Her therapist said that she had worked on running that day. Therapy...what a wonderful thing. It is amazing how they know exactly how to put a child into position to help them learn. I remember when Sophie was learning how to transition from laying to sitting. There are so many steps involved that normally you wouldn't think about. But they know exactly what muscles are involved and what exercises need to be done to get those muscles working properly. I am so grateful for ALL of Sophie's therapist.

Sophie is learning NEW WORDS EVERYDAY!!! Words that I don't even teach her. She is picking them up on her own. Just this past Friday, I was talking to her therapist about how happy she is to go to therapy now. Before surgery, she would scream and cry when we walked into the building. Her therapist had to carry her off because she would cling to me or drop to the floor. After surgery, she wouldn't cry as hard but when we walked into the building she would point to the door and say "bye-bye" and "door". Now she is SO excited to go to therapy. She walks right into the building and plays with the toys in the waiting room. When the therapist comes to get her, she grabs their hand and walks away without giving me a second glance. So as her therapist and I were discussing how happy she is now, Sophie was busy munching away on a snack. I didn't think she was even paying attention to what I was talking about. That was until I was buckling her into her carseat. She said in a clear voice without her little spin on the word...HAPPY. Just like that. With no prompting. With no teaching. She is now learning things without having me sit down with her for hours trying to teach her something new. Absolutely amazing!!!

I promise to update again soon...with photos and a video. I am trying to capture some of Sophie's new words on video so you can hear her sweet voice.

Baby Charlie...

2009-07-13T13:05:00.008-05:00

It's only been 6 days but I can't imagine life without Charlie. I think he is going to be my laid back little boy...putting a little balance in a household full of high demanding girls. He has already watched many hours of baseball with Brandon.

Sophie is becoming more gentle with him. At first, she just wanted to poke, bite, hit or otherwise torture him. But she doesn't do it to be mean. She just doesn't know how to act around him.

Elsa, on the other hand, thinks he is her babydoll. She is so gentle, sweet and caring with him. She wants to hold him, feed him, kiss him and just help out in any way she can.

Even Haley has bonded with him. She chose to hang out with us at the hospital instead of going back home. She was with us when we decided to check out of the hospital a day early and wanted to sit in the back seat with him on the way home.

He just completes our family when I thought there was no more room to grow. It is going to be an exhausting and demanding few years. I am not quite sure if I am ready for the challenge and I am sure there will be days when I lay down at night and wonder how I got through the day. One day at a time.

Introducing...

2009-07-07T10:49:00.005-05:00

Charles Henry Coleman II

"Charlie"
8 lbs 10 oz
21 inches
Born 9:47am
We are all doing absolutely wonderful!!!

Full Moon

2009-07-07T08:33:00.002-05:00

The moon was full last night and the baby didn't feel like waiting until 7:30 for the inducement. He thought 3am would be a better start time so we should meet him very soon.

Happy Birthday NaNaw...

2009-07-02T01:08:00.003-05:00

Sophie decided to give NaNaw (Grandma Debbie) the best birthday present ever. If you know NaNaw, you would know how much she loves and cares about Sophie. They have a special bond.

While NaNaw was playing with Sophie in her toy closet, Sophie pointed to the top shelf and said animal. She was pointing to her toy farmhouse with the animals inside. I was in the other room and heard it clear as day. Sophie just said her first 3 syllable word!!! She barely even says a 2 syllable word. Plus, she has never even attempted to say animal before and she used the word appropriately.

When Brandon got home from work, we were telling him the story and she repeated it again for him...several times. I honestly don't know if I would have believed it if I didn't hear it myself. It wasn't the clearest sound pronunciation but it was close.

Sophie was in a goofy mood tonight. I love it when she is like that. Full of laughter and giggles. She has become quite the mischievous one. Brandon showed her how to get water out of the water dispenser on the refrigerator door. She has seen us do this a million times but has never attempted to do it herself. As soon as I saw it, I thought BIG MISTAKE. So a few seconds later, she takes her cup over, fills it up with water (let me remind you that she is in a VERY GOOFY mood) and executes it perfectly. But as she is walking away, giggling her little butt off and holding the cup up in the air with only one hand, she is spilling it everywhere. And all we can do is laugh. She gets it. She is learning. She is happy.

And this is only one of many stories tonight. She was up to many crazy antics...giggling and laughing the entire time.

By the way, pre-surgery she would have EXTREME meltdowns if she spilt just a drop of water on her when she was drinking out of a cup or if she dropped a piece of food on the ground. And I seriously have no idea why she was like that. I tried my hardest to make it seem like it was no big deal. To the point where I would drop things and laugh just to show her it was okay. Nothing worked. She could not stand the idea of anything spilling.

So, now she is the complete opposite. I will take giggles over meltdowns any day.

Happy Birthday NaNaw!!! Thanks for spending the day with us.

Brand vs Generic...

2009-07-02T00:50:00.002-05:00

I know there has been a lot of discussion lately regarding brand name anti-epileptic drugs versus generic. I even had a conversation about this with our pharmacist. So I made the decision to have Sophie on the brand name Depakene and Dilantin.

But what I didn't know about our prescription drug insurance policy...

There are two lines in which a doctor can sign a prescription. One line states "substitution permitted" and the other states "dispense as written".

So even though our neurologist wrote the prescription for brand name Depakene and Dilantin, he signed the line that stated "substitution permitted". When I dropped off the prescription, I requested for there to be no substitution.

Doesn't sound like a big deal...until the price is given...$140.12 a month for brand name Depakene. So I called our insurance company to find out what our out-of-pocket maximum is for the year.

To only find out that if our neurologist had signed the line "dispense as written", it would only cost us $70.06 a month for brand name Depakene. A savings of $840.72 a year. So I kindly called our neurologist and requested that he send in a new prescription with it signed "dispense as written".

Considering all that Sophie has been through to get to where she is at now...this is the least I can do for her.

A new do...

2009-06-29T00:08:00.001-05:00

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.

All about Sophie...

2009-06-24T23:42:00.004-05:00

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

Cognitively...

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.

****

Physically...

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 is...it has all been wonderful. Seeing her change. Seeing her grow. And enjoying every single minute of it.

A smooth transition...

2009-06-24T23:12:00.003-05:00

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...

2009-06-24T23:11:00.003-05:00

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.

These moments...

2009-06-17T02:25:00.001-05:00

(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.

A great substitution...

2009-06-11T23:28:00.001-05:00

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...

2009-06-11T23:17:00.000-05:00

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...

2009-06-11T22:16:00.002-05:00

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 nowadays....you 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.

A new beginning...

2009-06-09T23:52:00.004-05:00

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 MORNING...in 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 away...it 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.

Home Sweet Home...

2009-06-07T23:48:00.002-05:00

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.

Where did our Sophie go???

2009-06-06T21:50:00.000-05:00

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 outside...it 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.

NO SEIZURES TODAY!!!

NO SEIZURES SINCE HER SUBTOTAL HEMISPHERECTOMY!!!

I LOVE THE SOUND OF THAT!!!

SOPHIE'S ADVOCATE

2009-06-05T23:36:00.006-05:00

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 naïve 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!

Brandon

Grrrr...

2009-06-05T20:47:00.004-05:00

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...

2009-06-05T16:01:00.003-05:00

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 good...no 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.

SEVEN MORNINGS OF NO SEIZURES!!!

SEVEN AFTERNOONS OF NO SEIZURES!!!

Heart Connect..

2009-06-05T11:55:00.003-05:00

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 is...no 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.

What goes down must come...

2009-06-04T19:08:00.009-05:00

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...

2009-06-04T14:33:00.000-05:00

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.

Exhausted...

2009-06-03T21:28:00.003-05:00

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!!!

A new day...

2009-06-02T23:15:00.001-05:00

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.

MY BABY GIRL IS BACK!!!

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...

2009-06-02T11:48:00.003-05:00

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...

2009-06-02T10:19:00.010-05:00

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

2009-06-02T02:36:00.005-05:00

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.
-- DIDN'T HAVE ANY SIEZURES!!!

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.

Brandon

Having a moment...

2009-06-01T21:22:00.003-05:00

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...

2009-06-01T16:25:00.002-05:00

Sophie loves to play with her babydoll's eyelashes.

A roller coaster of a day...

2009-05-31T23:14:00.002-05:00

First, I wanted to post some additional pictures of yesterday...

I am referencing this post "today" as in Sunday even though it is technically Monday (12:15am). To not keep everyone on their toes, I will begin by saying...ANOTHER DAY WITH NO SEIZURES. I'm loving this one day at a time approach. And I'm really loving the new things I get to count!!! And I'm REALLY loving the things I no longer have to count!!!

Today has been quite different than yesterday. Dr. Chugani's chief resident came in to talk with us this morning. He warned us that Day 3 post-op would be the worst. They are always right. She would be the most lethargic today, which is good, because it means the brain is healing...it has to bottom out before it gets better. She is more swollen today than yesterday...barely able to open her right eye. Even though we still had some milestone moments today, today was emotionally draining. For most of the day, Sophie was very lethargic. Not wanting to speak. Not wanting to sit up. She was limp. Almost lifeless. Every once in awhile she would peek at us with her left eye.

They took her wrap off today. If you want to see close up pictures, you can go to my other blog page. They also took out her JP drain. It was a bit painful. She was due for pain medication and usually they warn the nurse a half hour before but they didn't. She was brave though and it was fairly quick. She immediately got a dose of tylenol with codeine and feel asleep.

Later this afternoon, I felt brave enough to hold her. It was an emotional moment on many levels. It felt so good to have her in my arms but she wasn't there. Her body was so heavy. It was hard to hold her. She still has an IV in her right arm, drain from her head and pulse ox on her big toe...so just the logistics of juggling that was hard enough without the fear of worrying about the stitches in her head. It was so unnatural. She has absolutely no head control. Her body was limp. She looked uncomfortable. I am sure she felt uncomfortable. Her safe haven was no longer her safe haven. Our snuggle time was over within minutes when she projectile vomited all over the two of us.

I didn't think she would be like this. I wasn't expecting her to lose all her tone and not be able to sit up. I think she only said one word today...juice. I can't remember her saying anything else.

She did have a big moment late this evening. As I was comforting her, she grabbed my hair with her left hand and slowly put her right thumb in her mouth. It was a moment. I cried. I never thought I would cry seeing my baby girl suck her thumb. But then her monitor starting beeping. The IV in the crook of her right arm was being crimped. So that was the end of that. I pleaded with the anesthesiologist not to put anything in that arm. He understood...he had a 6 year old that still sucked her thumb. But with just having surgery a few days before and the need to start new IVs (for both surgeries, she had 2 IVs in and one arterial line), they had to go there. I even saw where they tried to stick her in other places but I guess those veins just wouldn't hold.

She vomited once more this evening. She has been able to drink some juice throughout the day. She was on an as needed dose of Reglan and Zofran but she is now getting that on a regular basis.

Her current meds are as follows (all in IV form except tylenol with codeine): 75mg of Depakote every 6 hours, 40mg of Dilantin every 12 hours, 1.5mg of Zofran every 8 hours, 1.5mg of Reglan every 6 hours, an antibiotic every 8 hours and 24mg of Tylenol with codeine every 4 hours on an as needed basis. She had to get a bolus of Depakote and Dilantin this afternoon because her levels were not high enough.

Well, it's 2am and I really need to get some sleep. It has taken me forever to write this post...blood draws, diaper changes, itchies to deal with, etc. She is sleeping peacefully now and just a few minutes ago she said "mom"!!!

Sophie & Elsa Reunited...

2009-05-31T20:25:00.007-05:00

This post requires no words. Maybe just some tissues...

Busy, busy, busy...

2009-05-30T23:15:00.001-05:00

In a good way.

I took the night shift last night. I was with Sophie in the ICU until about 5:30am. Brandon came up around 4:30am but I had to clip her nails and make sure she was all comfy before I could leave. She has been scratching the heck out of herself (side effect of morphine) and since the hospital doesn't have any fingernail clippers I had to wait until Brandon brought them up to me. She is now on oral tylenol with codeine so hopefully the itchies will go away.

But I was exhausted. Did not have the energy to update last night. Besides, there wasn't much else to say after Brandon's post. She was sleeping away in the ICU. Irritable at times but we kept her on a regular dose of morphine.

I slept in until 10am. As I was cleaning out the bathroom, Brandon walks in with Elsa!!! I was in complete shock. I seriously thought I was hallucinating. I just stood there and stared at them for a minute. Trying to register, in the foggy mess that I was in, that Elsa was here.

Once I snapped out of it, I held her tight in my arms. It felt so wonderful. I missed her so much. She wrapped her tiny arms around me and squeezed hard and put her head on my shoulder. I felt rejuvenated. Good thing because she was FULL of energy...wanting to explore everything around her.

Once we all got ready, we headed up to the hospital to see Sophie. Since Sophie was still in the ICU, Elsa wasn't able to see her just yet. I went back to see Sophie for a bit and then we all headed to lunch with Brandon staying back with Sophie. After lunch, I got to see Sophie for just a little bit. Then Brandon, Elsa and I headed back to the RMH so Brandon could eat lunch and Elsa needed a nap. I wanted to spend as much time with Elsa since she is heading back with Jason early tomorrow morning.

Elsa had other plans though. She wasn't ready for a nap. We played for a bit and she finally grew tired. We cuddled together in bed. It was sweet. She was snuggled in between Brandon and I. Once I knew she was sound asleep, I got some things done (laundry, etc.).

Once Elsa woke up, we all went to the hospital to see Sophie again...including Elsa. It was so sweet. Elsa kept giving Sophie kisses and waving hi. Sophie couldn't take her puffy little eyes off of her. I haven't left Sophie's bedside ever since. She is doing WONDERFULLY...all things considered. She continues to be so incredibly brave. I am so proud of her.

It's a little after midnight. I can officially say that none of us saw Sophie have any seizures on Saturday, May 30th. One day at a time.

The most important fact...

2009-05-30T20:10:00.002-05:00

Jason forgot to mention the most important fact...

WE HAVE NOT SEEN SOPHIE HAVE A SEIZURE IN THE LAST 24 HOURS!!!

Update from the Uncle JayJay

2009-05-30T17:30:00.002-05:00

Elaine has had a full day so I will attempt my first blog. Grandma surprised Elaine with a 24 hour visit from Elsa her 16 month old daughter. She has been in shock, joy, and excitement with both her daughters here.

Sophie is doing great! She transferred out of the ICU and to the floor this afternoon.

Movement: She is moving all four extremities! Her right arm and leg are weak but she is moving them better than the doctor's expected after surgery. Not a surprise knowing Sophie's disposition:)

Talking: Sophie said "wah wah" and "more" when Brandon and I were giving her mouth swabs. It was like hearing a child say their first words. Tears welled up in our eyes with excitement. Since the first few words she has said JayJay, Momma, and Dada.

Eating/Drinking: Sophie is drinking any juice we set her up with. She will be moving to soft food later tonight.

Hockey game: A glorious man donated 4 lower level seats to game 1 of the Stanley Cup playoffs here in Detroit. I need to wrap this up in time to shower and get to the game, and yes Brandon is going with me.

I know Brandon and Elaine have appreciated all the support from the IS group, teachers, friends, and family.

Jason