Easter Pictures...

Purina Farms with Uncle Ed, Aunt Erica, Uncle Ricky and Cousin Ben (only 3 weeks younger than Elsa)...

Brandon had a death grip on Sophie because the first animal they got to pet...a baby duck...she grabbed by the beak and held in the air. The lady freaked out and let go when Sophie grabbed it. Poor baby duck...probably traumatized for life. Sophie had no idea what she did. Of course, I was in charge of her at the moment. Brandon took over after that.

Elsa and Ben...they could be twins.

Update From Dr. Chugani

Dr. Chugani came out at 1:45EST and said things are still going very well. The back is almost done and then they will move to the front. Dr. Sood estimates that they will be able to read the motor cortex around 4 or 5... Wow that is a long time!!! My heart drops any time a doctor comes through the door. The phone call is so much safer because you know that the nurse is going to say something generic like "things are going fine".

On a lighter note. I have received further confirmation that people in general are socially retarded. I grabbed a sandwich at Subway about an hour ago and the lady asking me what kind of cheese I wanted says, and I quote "Why so serious? Cheer up, its Friday!". Does she realize that she works in a hospital? My initial reaction was to say "Yes, big plans for the weekend. I plan on starting rehab with my daughter that is getting half her brain removed." I resisted and smiled instead.

Brandon

Still waiting...

Surgery began around 10:15am. We have received several updates from the operating room nurse...

OR Nurse: Everything is going well.

Me: Thanks for the update.

OR Nurse: I'll call back in an hour.

That is it. So not much to update. Not until they come to point where they have to make a decision on the motor and sensory cortex. Dr. Chugani did stop by to say everything in the OR was quiet...just the way they like it. It will probably be late afternoon before they make a decision on the motor and sensory cortex. So I won't be updating regarding the surgery until we find out what the decision will be. But I may post some more videos...it's calming to me to go back and watch them.

Sweet Licks...Umm Kisses

Enjoy...

Thank you...

Thank you Kelli and Robert for the yummy edible arrangement and balloon.
The chocolate covered strawberries were delicious!

Thank you Aunts, Uncles and Cousins for the beautiful flowers, teddy bear and balloon.
They really brighten up the room.

Thank you Uncle Steve and Aunt Diane for the cards.
They were very thoughtful.

The waiting begins...

It's 8:50am. The anesthesiologist, nurses and Dr. Sood all came in and talked with us. They just took her back about 10 minutes. It will be about an hour before the actual surgery starts.

This morning has been by far the hardest moment. There is so much unknown. So much to be hopeful for but also so much to be scared about. It will be what it is but the "not knowing" part is always the hardest. Not yet knowing what to accept. It has always been that way ever since Sophie was first diagnosed at 6 months of age.

Thank you all for your words of encouragement. We are trying our hardest to stay positive. We are just so incredibly scared, emotional, tired, hopeful, grateful...so many mixed emotions.

All About Poker

Probably not the time for this (especially after my "think for the best" speech), but upon awaking after 3 hours of sleep last night, I couldn't get one thing out of my mind, my initial read**. Many that know me well understand that I would rather play poker than most anything, but life and the need to actually receive a paycheck keeps getting in the way. I study body language and reaction to get a read on what to do, fold, raise, call, talk, don't talk, etc. (for those that lost money to me, ignore this post as I am not paying attention, really).

So, what does this have to do with Sophie and the surgery? When Dr. Asano and Dr. Chugani came into the room to give us the surgery news, I had two different reads. Dr. Chugani was displaying subtle confidence (consistent with the not terrible but not great news) but my read on Dr. Asano was much much different. As Dr. Chugani took over the description, I never took my eyes off Dr. Asano. My initial read (the one that poker players say you should stick with 90% of the time) was that there was a level of guilt or concern there. He consistently looked down to the right. As I awoke this morning, I couldn't get this image out of my head. I recalled from the show Lie to Me (predictable but also very interesting analyzing body language) that my read was probably accurate, but what about the Japanese culture. Could it have just been a sign of respect (but then why not just down...why the right also)? Am I overanalyzing? Probably... Nonetheless, I couldn't fall back to asleep, because I didn't trust my read and folded. I chickened out! I did ask the question "knowing what you know now, would you have recommended starting the surgery"; however, only Dr. Chugani answered. What would have Dr. Asano have said?

So, I searched for looking down and to the right on Google and confirmed:

"Looking down

Looking at a person can be an act of power and domination. Looking down involves not looking at the other person, which hence may be a sign of submission ('I am not a threat, really; please do not hurt me. You are so glorious I would be dazzled if I looked at you.')

Looking down can thus be a signal of submission. It can also indicate that the person is feeling guilty.

A notable way that a lower person looks down at a higher person is by tilting their head back. Even taller people may do this.

Looking down and to the left can indicate that they are talking to themselves (look for slight movement of the lips). Looking down and to the right can indicate that they are attending to internal emotions.

In many cultures where eye contact is a rude or dominant signal, people will look down when talking with others in order to show respect."

Pretty consistent with the read but I missed the attending to internal emotions. Maybe he does just take these things personally. Maybe he was feeling guilty for approving the surgery (he is the most conservative, but I hope not). Maybe he was showing respect but he wasn't talking at the time and why right??? Maybe he thought I looked glorious and was dazzled by me...probably not. Part of me wishes I didn't notice.

Okay enough of that. I will ask him in a couple hours. Won't change our course but I need to know that all of my questions were answered and that I hear directly from Dr. Asano what he is feeling...maybe I will get a few more reads :)

Speaking of poker, while talking to Elaine last night, the only analogy I could come up with is that this feels like a race...a coin flip. We have pocket 10s and the infantile spasms has AK suited... The pocket 10s are a slight favorite so maybe it is the other way around. Either way, heads we win, tails we lose. Are we prepared to flip a coin on this? Are both sides tails? If the alternative is don't flip the coin and always lose, don't you have to flip?

I guess I am back to think the worst and hope for the best philosophy. It just works better for me. Many times when facing a race, I will say "I know I am going to lose this hand". Reverse psychology...although it doesn't change a thing. The flop, turn, and river are set. The cards are on the table for everyone to see.

Thanks for reading. It may have sounded negative but it really helped me gather my thoughts. I am not usually this much of an open book. Please use whatever method works best for you: prayer (even if laodicean), thoughts, reverse psychology, positive thinking, meditation, sacrifice a lamb (okay don't do that, a little outdated)...we will take it all!

Brandon

** All words in italics and bold is poker terminology.

What is under that wrap...

Sophie's wrap came completely off tonight. They kept trying to reinforce it but it just wasn't working. Luckily, a different surgical resident was on call from earlier today. She was amazing. She actually took a look at the bleeding that was occuring on the front of her head and analyzed it. She took the wrap off and put a new one on. It looks SOOOO much better. Earlier, Sophie kept itching her head and pulling at the wires coming out...AH YAH YAH!!! Not for those with a weak stomach (hmmm...my husband). I took a few pictures but as I realize all of you may have the same feeling as my honey, I set up a new blog with the pictures. Though, I didn't actually take pictures of when the wrap was completely off (with the stitches, shaved head and more wires). Jason thinks that I should actually shave Sophie's head completely. I thought maybe I could do some kind of combover and put a bow in it. But after seeing what it actually looks like...maybe not. Jason and Brandon both said they would shave their heads also. What do you think???

Pictures taken when I first saw her this morning.

The bleeding in the front of her head was actually about three times worse than in this picture.

The head wrap was also a lot higher on her head before they rewrapped it.

Her new head wrap.

Surgery Strategy

The news is in. Not great, not terrible.

The diagnosis:

-- Sophie's seizures are originating primarily from the left frontal cortex with a lot of spiking** in the left temporal, left parietal and left occipital cortexes.

-- There is also a lot of spiking in the left motor and sensory cortex (more on that later).

-- There is also some diffused seizure activity with no focal origination.

-- There is also some spiking over the entire right hemisphere though no seizures were noted originating from the right hemisphere (good news...though of course it would have been better not to see any spiking on the right hemisphere...more on that later).

**Spiking is considered seizure activity but not a seizure. Makes perfect sense...right?


The plan:

Step 1: Keep our composure, man this sucks!

Step 2: Repeat step 1.

Step 3: At 8am tomorrow, Sophie will be taken back into surgery for a subtotal hemispherectomy (I will pause for you to grab your medical dictionary, ready?). In other words, they will remove the left frontal cortex, left parietal cortex, left temporal cortex and left occipital cortex and LEAVE the motor and sensory cortexes.

Step 4: Immediately after the subtotal hemispherectomy, EITHER step 4a, 4b, or 4c will occur. They will keep the grids on the left motor and sensory cortex and right hemisphere for immediate observation.

• Step 4a (best case scenario): After the subtotal hemispherectomy, no or minimal spiking will be noted in the motor and sensory cortex and no further action is needed.
• Step 4b (so so scenario): The motor and sensory cortex will continue to show spiking in which they will perform a multiple subpial transection (MST). In other words, the cortex will stay but slices will be made to the horizontal nerve fibers.
• Step 4c (don't want to think about it scenario): If they continue to see a lot of spiking in the motor and sensory cortex, they will remove it. If they remove this cortex, Sophie will be weak on her right side and lose a lot of her fine motor skills in her right hand and walk with a limp. Considering the delays that she already has, this would be one more further setback to overcome.

Step 5: Repeatedly perform Steps 1 and 2...

Step 6: See Sophie in ICU at 6 or 7 pm tomorrow night...almost 12 hours later.

Step 7: Never see seizures again! Okay, maybe overly optimistic but why not change course. My philosophy ever since ACTH didn't work has been to accept the worst and hope for the best. This way you can't get crushed. But it is way too late for that now.

So, the only reason we are closer to answers is passage of time...which seems to be on slow motion. Sophie is still being strong as always. As I started typing this blog, she woke up and without prodding, she blew me two quick kisses with her lips. I think she is telling us that we are doing the right thing and she can handle it. Elaine can't wait until she can cuddle up and snuggle (Sophie's favorite pastime) this Saturday.

Brandon (with technical editing from Elaine)...because I have no idea what parietal means

Update right before posting: Sophie just sat up and started waving and saying "hi hi hi hi" to Elaine. She even said "hay hay" when we showed her the picture of her older sister. We sat her up and she drank a little.

One look at Sophie this morning and I was in tears. Just as the doctors predicted, she is starting to swell. They said today would be the worst. Her left eye is swollen almost completely shut. The gauze around her head just won't stay on. They have reinforced it so many times and it just keeps riding up. The last thing I need to see at the moment is what is underneath all that gauze. I can already see a few stitches peaking through and the actual wires coming out of the back of her head. ACK!!!

Then, as soon as Brandon walked out of the room and I was left alone with her, she woke up. Broke my heart! I tried to hold it all in for her. To be strong at the moment but it was hard. She didn't even try sitting up. Her left eye just barely visible. And she cried and moaned like she was in pain. All I wanted to do was swoop her up in my arms. She looks so weak and it breaks my heart that I can't hold her. After only a few minutes, she settled down and went back to sleep. I called the nurse and requested another dose of morphine (she hadn't had any since 2am).

Jason took the first part of the night shift and from what I have heard...she did great. Brandon took over around 5am. After he posted his updated, she vomited once. They gave her some more Zofran. She has had no desire to drink anything since she has left the ICU. Her mouth looks so dry but she doesn't want me to swab it with water. I've been putting a lot of vaseline on her lips to keep them from drying up too much.

She is sleeping peacefully at the moment. We just need to get through the next 22 hours. Once she is in the hands of Dr. Sood and Dr. Asano, I believe all will be well. They are amazing doctors. I am anxious to meet with them to find out what the consensus will be in what areas of the brain they would like to remove.

Quick Morning Update

Sophie had an uneventful night. Sleeping and some morphine has become her routine. No seizure clusters. Some swelling has arrived (her left eye doesn't open) but her face still looks great (good genes from her mama).

Brandon

Prepared But Still Learning

As I (Brandon) sit down to send a second epic blog, I came to the realization that without material, it is very difficult. Since we left the ICU, Sophie has slept...no seizures (kind of odd but they have given her high doses of Dilantin and Depakote), no vomiting, no beeping, no swelling (where is this swelling that we have been preparing for???) = no stories. Maybe it is the calm before the storm...

So with limited material, I offer the realization that no matter how prepared and educated on this subject you are, the most subtle question and answer can mean the exact opposite of what you thought. We come to Detroit thinking we have asked all the questions and understand the consequences of all the answers. What does it mean if the seizures are originating from the left or right? What if the motor cortex needs to be removed? Does she talk? Does she walk? Do her seizures favor one side of the body? And then the simple question, is she left handed or right handed?

I don't think we have met with Dr. Chugani a single time in the last 2 1/2 years where he didn't ask this question. In fact, the first time we met him he predicted that she would be left handed based on the results of the pet scan. Over the last 6 months, she has favored her left hand maybe 70% of the time, which is what we reported to Dr. Chugani for the second surgery conference. One of the reasons for the recommended surgery was her favoring the left hand. So, that is a good thing, right? As I spoke with Dr. Chugani this morning (he really talks to you, not down to you), he references that her being "weak" on the right side may be an indication the left motor cortex is damaged. I immediately started back-peddling..."wait, when we told you that she FAVORED her left, we didn't mean she was WEAK on the right" trying to rationalize in my head that the motor cortex will be fine...and maybe it will. We will know in less than 24 hours THE PLAN, which we know in our hearts is THE ANSWER. It is funny that we have been playing up her left-handedness as a positive and are moving it into the negative column 36 hours before the surgery.

Jason slept until noon today and will be taking most of the night shift so that Elaine and I can sleep. He also went to the grocery store and the 3 of us somehow devoured way too much food. Can't thank him enough. One of us will update you early in the morning.

Brandon

In a new room...

It's around 4pm. Around 2pm Sophie was transferred from the ICU to a regular monitoring room (#586). Dr. Asano and team immediately started the motor and sensory mapping. Everything went well. In motor mapping, they send an electrical current to the electrode on the brain which causes a part of the body to move. In sensory mapping, they tape a device to the area which sends electrical current and then monitor the EEG to see what area is being stimulated.

Sophie is still in and out of sleep. She vomited again right before she was transferred. They gave her another dose of Zofran. She is still doing extremely well. Around 3pm, she received 1mg of morphine. Pretty boring stuff...just the way we like it!!!

Just to spice things up a bit :) here's a video of the sensory mapping...

My Sweet Baby Girl...

Here are some pictures so you can all see how well she is doing...

Up and drinking...

It's about 11am. Sophie woke up about 15 minutes ago and sat up. She was alert and talking. Repeating the words we asked her to. Then she chugged a cup of apple juice. Brandon got here about 45 minutes ago, so he was able to see all of this. It was heartwarming to see her awake and not in pain. Just a little disoriented. She is already sleeping again.

Her face looks incredible. Very minimal swelling. Sophie will be transferred to the 5th floor for monitoring as soon as the room is available. Once she is transferred, Dr. Asano will perform the motor mapping.

Thanks for checking in on us. The first thing Brandon did once he checked in on Sophie this morning was read all the comments from his post. Thank you all for being so incredibly supportive! I will be posting pictures this afternoon once I get my laptop back (I left it at the RMH).

By the way, we are staying here:

Ronald McDonald House

Room #25

3911 Beaubien St.

Detroit, MI 48201

And we are at this hospital:

Children's Hospital of Michigan*

3901 Beaubien

Detroit, Michigan 48201

*Not sure what room we will be in yet.

Morning of Day 2...

It's 8:30am. I got here about an hour ago. I can't believe I slept that long!!! Brandon left shortly after he posted** and Jason took over. I woke up when Brandon walked through the door. Even though he didn't tell me everything (thank goodness he didn't...the seizures, the vomiting...it would have sent me running), I was having a small panic attack. My chest felt tight and I was anxious to see her. I didn't think I would ever fall back asleep. I thought maybe it was my mommy intuition kicking in to go check in on her. But I didn't give in to it. I knew I needed my rest to take over the next shift. Besides the fact that Jason is technically more qualified to take care of her than I am (being an ICU nurse for so long...he knows EXACTLY what is going on and what she needs and he is use to working the night shift). So in the end, I had nothing to worry about...Brandon and Jason took EXCELLENT care of Sophie.

Sophie is doing extremely well despite all that she has been through. She doesn't seem to be in any pain. Just a little uncomfortable. Her pain management order is 1.5mg of morphine no more than every two hours. So far, she has received the following dosages...

Sophie received a dose of morphine right before being transferred to the ICU. Then she received 1.5mg at 10:20pm. And 1mg at 2am and 7am. She is resting quite comfortably and she looks so peaceful. She did vomit once more on Jason's shift. They gave her some Zofran to settle her stomach. (Update...she received another 1mg at 10:25am).

Dr. Sood, Dr. Asano and a few other doctors where in to check in on her. They all thought she was doing great.

**Who knew...my honey is quite the blogger!!! It gave me a few laughs when I read it this morning. Oh, and the whole fainting thing...he isn't kidding. During one of Sophie's many ER visits, the nurses were more concerned about him than Sophie because his face was bright white. They had him sit down in a chair and brought him some water.

What is That Beeping?

It is 2:35 am. Greetings from the night shift. Sorry for the long post but I couldn't stop writing. Sophie is fine but keeping dad on his toes (literally and figuratively).

As Elaine and Jason walked out, I pulled out the laptop and settled in for a relaxing movie as Sophie slept away...however, the various monitors and Sophie's roommate had other ideas. I haven't sat down since they left.

First, Sophie decided to give Dr. Asano plenty to read when he gets here in the morning. She woke up and had about 20 seizures. She was not very happy when she opened her eyes to a strange nurse rather than her favorite person in the World (her mama). However, she had to settle for the dad as she continued to say mamamamamamamamamamamamamamama. It was only 5 minutes after Elaine had left but I knew she wouldn't get any sleep if I called her every time something happened. Sorry Elaine but you and baby need rest.

Second, they gave Sophie some morphine and she fell back asleep. I immediately told them to get her seizure meds (Depakote and Dylantyn) just like Elaine gave me instructions to do. I believe it was one of the 20 instructions...the yellow line means this and should be between this and this, the green line, the blue line, the red line, the purple numbers, the ICP range, don't forget to write down the seizure activity, only let the morphine go in this tube (that one came in handy as the nurse seemed confused), etc. etc. etc.

Third, the yellow line (which I recalled was breaths per minute and should be approximately 20) went down and down and down until it was zero and the machine was beeping repeatedly. She was breathing (don't worry even though I sure did) but the morphine made her breaths shallow. This yellow line continued to crash and go off every 5 minutes while I made sure she was breathing and became obsessive of counting the breaths per minute myself.

Okay, time to relax until the kid that Sophie is sharing a room with had everything beeping. He proceeded to have 3 different IVs put in and come out within the next 2 hours. Since his parents are nowhere to be found, I became the person silencing the beeps on his machine too for the nurse (and assuring him that he would get ice cream soon...that may be the only word he knows). Even though she repeatedly thanked me, I assured her it was in my best interest to shut it up (the machine, not the kid) as well.

Back to Sophie. Fourth, around 11:30, I asked Dianne (her nurse) whether her seizure meds were here yet. She said they would only come if she had 2-3 seizures. Did I imagine those 20 seizures, which she was standing right next to me during? Evidently it wasn't as obvious to her even though I told her and asked her to get her meds...end of the shift I guess.

Around 11:45, Laura took over. Laura seems to be getting everything much more organized around the bed but that woke Sophie up. Sophie had one of the longer clusters I have seen (40 or more). More data for Dr. Asano!!! But once again mamamama was the word of choice (although she did throw in a "door", which is her favorite word when wanting to leave a room...I don't blame her) during the episode as I continued to ask WHERE WAS HER MEDS? At the end of the cluster, Sophie decided to really test my stomach by throwing up a little towards me (green which I was assured is normal).

Elaine can confirm that I don't have the strongest stomach for blood, needles, and puke so this is the fainting trifecta. But I made it through and so did Sophie. She is so brave and strong.

Back to hopelessly trying to 'interpret' the 120 different leads on Sophie's brain. Which one spiked first? No idea...will wait for Dr. Asano to fill us in tomorrow.

Time to rest...

It's 10:45pm**. Time for all of us to get some rest...well not Brandon quite yet. Sophie is doing INCREDIBLE. It was hard seeing her and not being able to scoop her up in my arms. But she looks amazing. Her head is all wrapped up in guaze but there is no swelling. She is just sleeping peacefully. All her vitals look great. They haven't given her any morphine since she left post-op recovery. I am worried about pain over the next few days but Sophie has always had a VERY HIGH pain threshold so hopefully she will do well. They keep telling us to expect swelling in the next 24 to 48 hours. So far...none. She was a little pale coming out of surgery but her color is back. I am just glad that she is resting so peacefully. She did try to sit up twice but went right back to sleep. I have to admit...it was heartwarming to see those precious eyes of her if only for a second.

Dr. Asano came in around 9pm to do some testing. He turned off all the lights in the room and put this bright flashing strobe light in front of her eyes. He was mapping out the part of the brain that controls visions...just amazing!!! Once he analyzed that data, he did another test. He put a small device on her right hand that sent electrical pulses. He said it feels like static electricity. Her hand just kept twitching. This was to map out her sensory area. She was completely out of it for both of these test.

Jason and I are back at the RMH. Brandon is taking the first shift until about 2am or 3am. Jason is taking over after that. Then it is my turn. They insisted. It was hard for me to leave but I have another little one brewing in the pot to worry about it. I cannot believe how much at peace I am with all of this. Thank you all for your thoughts and prayers!!!

**I keep posting the time because blogger is not letting me publish on EST. I changed my computer to EST but then it was delaying my post for an hour. Couldn't figure out what was wrong and between all the different computers that I am using, I thought it would be easier if I just put my own time stamp on everything.

Sophie Looks Great

Elaine is with her baby girl right now. She is sleeping, breathing on her own, and looks really good. She hasn't started swelling yet. They said that she sat up in bed in recovery, which is definitely our Sophie trying to get right back at it.

Brandon

Grid Surgery - Sooner than we thought...

It's a little after 4pm. We got a phone call about 30 minutes ago giving us an update saying that things were going great.

And about 10 minutes ago, Dr. Sood came in to say they were DONE!!! ALREADY!!! Everything went well. She will be in recovery for about an hour before she goes to ICU. We won't be able to see her until she is in ICU.

Even though they have seen a lot of spiking on the left hemisphere, it is too early to say exactly where the seizures are originating. He did not have any information regarding seizure activity on the right hemisphere.

I cannot believe how calm I have been today. Thank you all for your thoughts and prayers. Your comments, e-mails, phone calls and these special blog posts (Our Jackers, Dear Trevor, Austin's IS Journey...be sure to also click on the second this) have warmed my heart in a time that I thought I would not be able to handle.

Everyone at the hospital have been amazing and the constant updates keep me busy posting away. I have had a lot to keep me distracted today.

But soon I will be able to see my baby girl again. I am scared. Scared to see what she is going to look like. All wrapped up in gauze. She will be well sedated for the night so hopefully she will get plenty of rest. They have prepared us for swelling. Since she had grids placed on both sides, they said that swelling will probably be worse than normal. But the swelling will be worse tomorrow. I just can't wait to give a kiss on her sweet cheek.

When she was taken back to the operating room, I got to go with her. They initially sedated her with gas and she was out within 10 seconds. I got to stand by her side and tell her that everything was going to be okay. Then I was able to give her a kiss and say goodbye. It was hard to walk out of that room. But I knew she was in great hands. There is nowhere else I could imagine her having the surgery. They have done so many of these surgeries that they have learned all the little things that make things go smoother.

Grid Surgery - Meet the doctors...

It's 2:55pm. We just met with Dr. Chugani and Dr. Asano. Talk about a dream team. Dr. Chugani, Dr. Asano and Dr. Sood are just amazing and caring doctors.

Here's the update from Brandon (I am going to try to eat something)...

The surgery is going well. They have completed placing the grids on the left side and Dr. Sood is currently closing. She has had no major complications. The next step is the burrow on the right side with 2 grids to be placed. Dr. Asano spent 15 minutes discussing what to expect next. Sophie should be in ICU by 7:00 and he expects that she will have 2-3 seizures within the first hour (the EEG is already showing activity...not unexpected). By tomorrow, they will start her on Dylantin and Depakote through her IV and start mapping the brain. We will keep everyone posted.

Grid Surgery update...

It's 2:05pm. We just got a call from the nurse in the operating room. Surgery is going well and the grids are being placed.

Our trip, so far, in pictures...

This is Sophie. Happy as can be. In a long car ride.

As long as she has her mommy and daddy...she is so content.

Sleeping beauty.

Waiting room.
Pre-op...in the most comfy hospital gown I have ever seen.

Hootie...deserves a post on its own to explain his significance.
Included in the bag is a note from NaNaw (Grandma Debbie).
This bag went with Sophie during surgery to watch over her.

Grid Surgery has started...

It's almost 1pm. We just received an update. Surgery just started. Everything is going well.

By the way, Sophie's legal name is Charlotte Sophia Coleman. She was nicknamed Sophie before she was even born by her older sister, Haley. It just kind of stuck. Confusing when it comes to this medical world. I received a phone call from Emma (Alex's mom) checking in on us this morning and the hospital staff was quite confused. Also, our cell phones do not work in this part of the hospital so the best way to get ahold of us is through the internet.

Grid Surgery Pre-op...

It's 12pm (Detroit time) and Sophie just went back for surgery. It will take about an hour to prep her for surgery. The surgery will take about 4 to 6 hours.

We met with Dr. Sood (neurosurgeon) this morning. He answered all of our questions without even having us to ask one. In other words, he explained things very well.

We should have an update in about an hour.

The rest of our trip...

Sophie was a WILD CHILD as soon as we got out of the car. Bouncing off the wall crazy while we were checking in. As soon as we got settled in, we left for dinner. Amazingly enough, Sophie did not mind getting right back into her carseat. We drove about 15 miles (there is nothing to eat right around the RMH except during business hours) and found a Panera Bread. Again, as soon as Sophie was out of the car, she became as silly as ever. She was slap happy silly and it was funny to watch her. We were all seriously cracking up. Then we stopped by the grocery store and the fun continued. And continued when we got back to the RMH. She did not end up going to bed until a little after 11pm. I wish I took video because I cannot explain the things she was doing and words would not do it justice. She was just up and down and all around the place just doing the goofiest things.

Sophie is still sleeping. The hospital is literally right next door. We are leaving here in about 15 minutes to check in at the hospital.

My heart is racing. Fighting back the tears. They seem to want to flow easily nowadays. THANK YOU so much for all the thoughts and prayers. It means so much to us. It warms my heart and brings peace to my soul. I love you all!!!

On our way...

We left at 6:45am for Detroit. It is about an 8 hour drive. Not too bad with 3 adults...Brandon, Jason (Brandon's brother) and me. Sophie is INCREDIBLE in the car. She is easily entertainable. Sophie was still sleeping when we were getting ready to leave. She was up late last night so she would have probably slept in until at least 8:30am. So Brandon tried to put her in her carseat without waking her up. No such luck. But she was happy enough and did not mind getting in the carseat. So we all piled in but before we even made it out of the neighborhood we had to pull over. Sophie was having seizures that were making her quite upset and she wanted out of her carseat. Broke my heart...always does. So I held her and comforted her until they subsided. Her morning seizures are the worst...almost always makes her upset. This whole scenario actually gave me a sense of peace with the surgery. I know we are doing the right thing. With each seizure I see since the decision was made, the more at peace I am with the decision.

We drove 4.5 hours before stopping to eat lunch. Sophie did great. She was a little antsy towards the end but no crying and no screaming. Currently, we have about 30 minutes left and she is still doing great. **I am updating through Jason's wireless laptop.**

Tomorrow morning is Part 1 of the 2 part surgery. We are to be at the hospital by 9am and surgery is scheduled at 10:30am. Before the surgery begins, we will meet with Dr. Sood (neurosurgeon). Usually, you would meet him the day before but since today is a holiday, we will meet him right before surgery. Normally, I would be going out of my mind not meeting with the neurosurgeon sooner than that but I really don't have many questions. Meghan (Our Jackers) has really put my mind at ease. Her son went through this exact same process last September. She has been incredibly supportive and has explained everything to me in such great detail. Her blog is also a wealth of information.

Well, it is around 6pm and we are pulling up to the Ronald McDonald House. I will update more later.

"THE" call...

I got "THE" call from Ruth today. There is an opening on Tuesday, May 26th and she wanted to know if we wanted it. Of course, she left the message on my cell phone and I didn't get the message until 7pm tonight. Brandon was out playing golf. I was home alone with the girls. I couldn't breathe. I felt nauseous. I want this. I want this so bad. But I wrote it off...that is us getting a cancellation. I am 34 weeks pregnant. I am not suppose to travel after 36 weeks. So if we didn't get the call now then we had to wait until after the baby was born.

I was in planning mode. Not trying to think about the actual surgery. Just trying to get all the details worked out...who was going to watch Elsa and the new baby, making housing accommodations in Detroit, trying to get a neuropsych evaluation appointment (which took me almost 3 weeks to get and I got the call this morning with the appointment date of June 1st), etc.

So here I am now. In just a mere 5 days, Sophie will be scheduled to have Part 1 of the surgery. All my prior planning is out the door. Useless. Now I need to focus on both planning and surgery. I am in shock. I can't believe it. I am scared!!! Scared is an understatement!!!

But I am happy?!?! Can't think of quite the right word to explain how I feel. I knew Sophie was going to have surgery. So better now than later. Of course, I wish she didn't. I wish her seizures would have just stopped on their own. But I am hopeful that surgery is the answer. But it is hard to be hopeful when so many things have failed in the past. But I can't think about that. I can't think about the "what ifs". I HAVE to put all my hope into this. That by the end of next week I will be able to say...I HAVE NOT SEEN ANY SEIZURES TODAY!!!

Baby feet...

After reading this post, it reminded me of this picture of Sophie when she was 10 months old.


I love baby feet. Love them. Love them. Love them. A bit obsessed. They are just too darn cute. So here are a few extra pics...

In the hospital (less than 24 hours old)...

Check out these chunky ACTH legs (10 months old)...

Taking a nap (23 months old)...

Practicing to be a contortionist...

These pictures were actually taken on April 1st...hence the warmer clothes. We have had really warm weather lately.

California Residents...

For all those who live in California (below is reposted from GwendolynStrong.com)...

Friends of Gwendolyn, Vote NO on CA Prop 1D

To Our Dear California Resident Friends:

California Proposition 1D will be on a special statewide election ballot on May 19, 2009. We are asking you to please VOTE NO ON PROPOSITION 1D and tell your family, friends, colleagues, and neighbors to do the same.

If passed, the proposition will have a material NEGATIVE impact on Gwendolyn's services and would eliminate "First Five", an important early childhood development program dedicated to improving the lives of California’s young children and their families through a comprehensive system of education, health services, childcare, and other crucial programs. "First Five" was created as a result of the passage of Proposition 10 by California voters in 1998.

Please VOTE NO ON PROPOSITION 1D. This is important to the well-being of our family and families just like ours.

City Museum...

My blog has been...well...a little all too medical lately. We do have some fun in between all the not so fun things going on. Back in March, we took all the girls to the City Museum. It had been quite a few years since we had been there and I was quite surprised with all the new things that had built. Everyone had an absolute blast.

We started off in the Skate Park.
It had a bunch of ramps and such that you could slide down and swing across.
The girls had fun climbing and sliding around.

Taking a snack break. All that climbing wore them out.

Haley went to explore with a friend and the rest of us went to Toddler Town.

We found Haley and headed outside to Monstro City.
Not a place to go if you have a fear of heights.
There are all these wire things suspended from the outside of the building that you can climb around. Sophie and I decided to watch as the rest of them explored.

Med Update...

Banzel has been a nightmare. We thought Sophie was regressing. We saw quite a bit of decrease in her verbal speech and ability to focus. Broke my heart. Scared me to pieces. But as we weaned Banzel, we saw things start to pick up again. What a relief!!! As of this morning we are completely off Banzel.

On the other hand, Sophie's seizures have been a little scary lately. She mostly has tonic seizures (quick seizures in which her head will drop and her arms will fly out...each seizure only last a second but they come in clusters). But lately she has been having more atonic seizures (head will slightly decrease and arms will fly out but she freezes in this position for 5 to 10 seconds while her body slightly shakes). Usually, she will only have one of these at a time. But on 2 separate occassions, she had 4 atonic seizures in a row. Completely wiped her out. She will immediately cuddle up in my arms and fall asleep for 15 to 30 minutes. Breaks my heart.

So is this because of the weaning of the Banzel or increasing of the Felbatol? She always has withdrawal seizures. Even if the med did absolutely nothing for her seizures!!! ABSOLUTELY SUCKS!!! How can a med that does absolutely nothing for seizures cause them to get worse during the wean??? Luckily, her seizures eventually stabilize.

So for Felbatol...we are currently at 2.5ml/day (1ml in AM, .5ml at 2pm, 1ml in PM).

Felbatol...

On Monday evening, we started Sophie on Felbatol. This will be the last medication we try before the surgery. Dr. Epi said this was the only other recommendation she had before the surgery. She had mentioned it to us back in March and we discussed it with our local neurologist and he agreed. We had the blood work done and prescription in hand when we received the call about Sophie being presented at the surgical conference. Needless to say, everything got put on hold. Well, Dr. Epi mentioned it to us again last week. She said she has seen success with this drug when everything else has failed. So after e-mailing back and forth a few times with Dr. Chugani, he was on board.

We started off with .5ml on Monday evening. On Tuesday, we increased to .5ml twice a day. Today, we increased to .5ml three times a day. Our max dose will be 2ml three times a day. So far, we have not seen any difference. We are also down to 100mg of Banzel twice a day. We are holding steady at 3ml of Neurontin in the evening.

Another surgical conference Part 2...

Just to clarify... Sophie's case was presented at 2 surgical conferences. One at Children's Hospital of Michigan (CHM) presented by Dr. Chugani and one at St. Louis Children's Hospital (SLCH) presented by two neuros that Sophie has seen there in the past. One of the neuros is actually an epileptologist (a neurologist that specializes in epilepsy) who I will refer to as Dr. Epi. We met Dr. Epi during Sophie's 24 hour video EEG at SLCH last month.

Late yesterday afternoon, I received a phone call from Dr. Epi with the results of the surgical conference at SLCH. Brandon and I had a long discussion with her, in which, she was so incredibly informative on so many levels. To summarize the call, they concluded that Sophie is a surgical candidate and that it would be a case they would take on!!! What a relief!!!

I completely trust Dr. Chugani and the surgical team at CHM but to have another incredible group of doctors agree with their findings...just gives me such an incredible sense of calmness. Calmness that we are doing what is best for Sophie. Still scared out of my mind for her to go through that but at least I know we are making the right decision.

Even though SLCH is only 20 minutes from my house, I cannot imagine having the surgery anywhere but with the surgical team at CHM. Sophie's case is complicated and the surgical team at CHM has the most experience with the type of surgery that Sophie will have. Dr. Epi was even familiar with Dr. Chugani's case load. I sometimes forget that those outside the Infantile Spasms (IS) community may not realize the expertise Dr. Chugani has regarding IS. Families from all over the country...actually all over the world...seek his advice. Click here for his bio.

I will update soon regarding the phone conversation that I had with Dr. Chugani and Dr. Epi.

Another surgical conference Part 1...

Last Wednesday, I thought it was time to fill Sophie's local neuro in on the latest events. I told him everything and he agreed that surgery would give Sophie the best possible outcome at this time. I also explained that I did not think St. Louis Children's Hospital (SLCH)** would be interested in Sophie case. When Sophie was 10 month old, I had took her to the Epilepsy Center at SLCH to get a second opinion. He said he respected the neuro I had met with and that even though SLCH might not want to take on Sophie's case, that neuro might still agree that surgery is the best option for Sophie at this time.

So, I called first thing Thursday morning and his first available appointment was in August. I explained that August would be useless since Sophie is scheduled to have surgery in July. So the receptionist said that she would talk to the doctor and see what he wanted to do. A few hours later, the phone rang and it was him. I was quite surprised. It took 2 months to see this doctor initially, so the last thing I was expecting was a call from him directly. I explained everything and he said that he would present Sophie to their surgical conference that meets every Monday but it would not be next week because they were a little back logged with presenting cases. He wanted to talk with the neuro I had met in the hospital last month while Sophie was getting her EEG because she was most familiar with Sophie's current situation. Less than 30 minutes later, he called back saying they had an opening this Monday (today) and that he and the other neuro would be presenting her case. All I needed to do was drop off the CD with Sophie's latest PET scan and MRI that was done in Detroit. He said that it was a good thing I had the EEG done in St. Louis because they do not rely on other hospital's EEG.

On Friday, I received a call from the neuro I had met in the hospital to get more information regarding Sophie's current situation. She said that I would get a call either Monday or Tuesday with the results from the surgical conference.

I feel so incredibly fortunate to have so many doctors interested in Sophie's case. Though it may put a small doubt in my mind if SLCH believes Sophie is not a surgical candidate, I have to remember that they are conservative and that Sophie is not a typical surgical candidate. But if they do believe she is a surgical candidate...I'll just feel that much more confident. Because even though it is hard to come to terms with brain surgery, I know I have found the best in Dr. Chugani and his team.

**In 2008, U.S. News & World Report recognized St. Louis Children's Neurology/Neurosurgery as 6th-best program in the nation.

My surgery scheduling day...

Now that I have had time to sit back and reflect on the week, I guess I should say that it wasn't a completely horrible day (the day surgery was scheduled)...just difficult.

It was just one of those days. Where nothing seems to go right.

Elsa was up in the middle of the night.

Brandon left early that morning to go out of town for work.

I was scrambling around trying to find time to call early in the morning to get Sophie's surgery scheduled. They have a surgical conference every Monday so I wanted to be the first one to get a hold of Ruth (Dr. Chugani's nurse who schedules the surgery and has an immense amount of knowledge regarding surgery).

I had Sophie to get ready for school and Elsa to get ready for music class.

I got a hold of Ruth before we left but the earliest date she could give us was July 7th (3 days after my due date) so she said she would call the neurosurgeon to try to get something earlier. She would try to call me back before the end of the day.

I was late dropping Sophie off which means instead of having the teachers come get her out of the car, I had to park and walk in with both Sophie and Elsa.

Elsa and I went to music class...a nice break from reality. We then ran a few errands and picked Sophie back up from school.

Sophie was crabby the minute I buckled her into her carseat. Lately, it seems that school has been completely exhausting to her. Her energy level isn't where it use to be.

Back at home, I tried to get Sophie to take a nap since she was having complete meltdowns but Elsa wasn't making it very easy for me. Then Dr. Chugani called in the midst of all of this to go over the list of questions I e-mailed him the night before. Luckily, I was able to get a hold of Brandon on 3-way so he could listen since both girls were screaming, crying and pulling on me in every direction. Dr. Chugani asked if I could hear him because he said he couldn't hear himself talk. So I put the phone on mute. But it was so hard to concentrate. At least he had the list of questions so I didn't have to chime in too often.

As soon as I got of the phone with him, I cuddled in bed with both girls and they fell asleep. As I snuck out of the room, the phone rang. This time it was the neurosurgeon's office. They had an earlier date for surgery!!! May 28th!!! Wonderful news. But wait...May 28th was the grid surgery date and June 4th was the epileptic surgery date. That meant a full 7 days of having the grids on. I was under the impression that it would only be 3 full days. Those additional 4 days would be very difficult. Grid surgery is an invasive procedure. In those 4 additional days, Sophie would be completely awake with grids attached directly to her brain. After a 24 hour video EEG, she is ready to pull the wires off and the wrap off of her head. So now I was very confused. Did she really need them on that long or was it a scheduling conflict? I know she was not the typical surgical case so maybe that is what Dr. Chugani wanted. I was freaking out while I was waiting to hear from Ruth on what really needed to be done. But I tentatively took the date just in case.

I then had to leave with Sophie to take her to her first private speech therapy class. My mom came over to watch Elsa (Thank you Mom). While Sophie was in therapy, Ruth called. She said that 7 days was not necessary but that it was the only time the neurosurgeon had available. So we discussed dates again and we scheduled the 2 part surgery for July 14th and 17th. I was second guessing myself but I just couldn't imagine putting Sophie through anymore than I had to. On the other hand, she could quite possibly be seizure free that many weeks earlier. Ugh!!! Then Ruth called back. She just found out that the neurosurgeon is on vacation the first part of July so the earliest date now is July 21st and 24th.

I called Brandon and he thought that maybe we shouldn't wait. I was so torn. Everyone I talked to said that the time between the 2 surgeries is the most difficult time.

Once we got home from therapy, my mother-in-law and Haley pulled up behind us. I figured I would just let things go for now and think about it later.

Later came too soon. After I dropped Haley off at dance class, I couldn't stop thinking about it. Obsessing about it. Brandon was out of town. Though my mother-in-law was here. She came over everyday after work and stayed the night (THANK YOU so much Debbie...I couldn't have gotten through the week without you!!!).

So the next day, I e-mailed Dr. Chugani. He said...I think it's Ok to wait the 2 months. Ruth will let you know if there is a cancellation, HC.

So now we wait. Planning on July 21st but hoping that if it is not up to God for Sophie to miraculously become seizure free in the meantime that it will be some other child scheduled to have surgery. Ruth asked and we agreed that we would be available at a days notice to head on up to Detroit if there is a cancellation.

Surgery date...

What a horrible ending to a horrible day. I have been reduced to tears so many times. The girls are fine. It's just me. I just don't want to hold it together anymore. But I just wanted to let everyone know that surgery is scheduled for July 21st (grid surgery) and July 24th (epileptic surgery).

Set in stone???

Tomorrow morning I will be calling Dr. Chugani's nurse to schedule the surgery. She was out of the office all last week and will be returning tomorrow morning. She is the one that coordinates the schedule of all the doctors involved. I am scared to make the phone call. It feels too real for me. Surgery has been this concept not a reality. And even though I hoped and prayed that it would be an option for Sophie, I hoped and prayed even harder that her seizures would just stop with medication. Or just spontaneously stop for some unknown reason as they did for 33 days back in December 2007/January 2008.

I was ready the last time we thought she was a surgical candidate. This time, I am scared. So very, VERY, VERY scared.

Our time line is kind of crazy because I am 29 weeks pregnant...due July 4th. That is only 11 weeks away. And I am not suppose to travel after 36 weeks.

Just the facts...

Every time I sat down or thought about sitting down to write a post about our conversation with Dr. Chugani, my head spins. My emotions are all over the place. Just trying to get a cohesive thought down has been nearly impossible. So instead, I am writing this post about the facts...leaving behind the emotions for a moment.

The EEG...

• The EEG is never really convincing.
  
• The left side is worse than the right side but there is independent right side activity.
  
• Her brain is electrically caught up in a storm. Eventually the brain burns out around the age of 4 or 5 years old. Meaning her development will level off and quite possibly regress. Once this happens, the skills are not regained.

The PET scans...

• The PET scan looks much worse on the left.
  
• There is a subtle area of abnormality in the right temporal lobe.

The MRI...

• The MRI shows a blurring in gray-white matter in the left hemisphere.
  
• Nothing is noted in the right hemisphere.

Additional evidence or reasons discussed on why the committee agreed on surgery...

• She is showing preference in her left hand.
  
• Jackson's case (which is similar to Sophie's) has proven to be successful.
• Since she has failed so many medications, this is the best option for her even though she does not have the best scenario for surgery.
  

Exhausted...

It has been a crazy day and night. We just got back from an emergency visit to the pediatric dentist for Sophie. All is okay. I just wanted to let everyone know that Dr. Chugani called today and he thinks surgery is the best option for Sophie. I am emotionally drained at the moment and can barely keep my eyes open so I will post all the details tomorrow. Good night.

I'm freaking out...

There is no other way to put it. I can't process the information I just received. A neurologist that works under Dr. Chugani just called me. She wanted to get a history of Sophie since our last visit in October. THEY ARE GOING TO PRESENT HER TO THE SURGICAL COMMITTEE on Monday!!! What did they see in the EEG??? I asked but she wanted to wait until Tuesday to discuss. I am in shock. This was the last thing I ever expected. I have (or had...not sure how I feel at the moment) given up on all hope that Sophie would ever be a surgical candidate. It just did not sound promising. It still does not sound promising. When the epileptologist reviewed her EEG with me at the hospital, she saw nothing that would point towards Sophie being a surgical candidate. Even though I had the EEG on a CD before I left the hospital, I waited until just this past Monday evening to mail it. I thought there was no point. But I had to send it. That was the whole reason we had the EEG in the first place...because Dr. Chugani had requested it. I am so glad it's Friday. Good Friday. Brandon took off work today. My brother from San Diego is in town visiting. And my sister, her husband and their little boy from Chicago are in town visiting. We have lots of fun things planned for the weekend. A lot to keep me busy. To keep my mind from going there. Because after the disappointment from last time, I don't know if my heart can take it.

Volunteers needed...

When Sophie was first diagnosed with Infantile Spasms, I felt lost and alone. I did not know a single person with a special needs child. I had support from family and friends but not the kind of connection I needed from someone who had been through what I was going through. So when I read this post about a couple starting a non-profit organization called HelpIsHere, I was motivated to help. Because it wasn't until I found the time to navigate through the internet that I finally found a support system...other families going through exactly what I was going through. I did not even know that online world existed. I am not exactly sure what their vision is for this organization, but wouldn't it be wonderful if every doctor and every hospital passed along the name of this organization along with the devastating news that your child's future is not going to be what you envisioned. Because when we left the hospital, we were given an expensive vial of medication and needles and was told to inject this into her leg (ourselves) once a day...our vial of hope that soon disappointed us. Nothing was said of what needed to be done for her hypotonia (low tone) or developmental delays. Through my research on the internet, I found out about Early Intervention (state-based therapy program for children age birth to 3 years) which got her the therapy and orthotics that she needed. Through my research on the internet, I found out about different medications, alternative treatments, alternative therapies and so much more that I was able to discuss with her neurologist. It took time...a lot of hours on the computer...a lot of sleepless nights, but it eventually all came together. But it shouldn't be that hard. To be able to go to one website and get all this information would have been incredible. Though I would have still felt devastated, I would not have felt alone or lost.


Reposted from GwendolynStrong.com

Victoria and I Need Your Help

Victoria and I are starting a non-profit project called HelpIsHere.org. HelpIsHere is an online community driven website that will help those impacted by life-altering illness answer the difficult post-diagnosis question - What now?

In short, the mission of HelpIsHere.org is to help people navigate resources specific to their disease, demographic, and geographic region. NOTHING like this exists, and in our experience the need is enormous.

We are recruiting an online focus group of 20-30 people who have in the past or are currently dealing with life-altering illness - either as a patient, caregiver, family member, friend or professional. The group isn’t limited to SMA, children, or the U.S. -- in fact, the more diverse the group the better because HelpIsHere.org will be aimed at all life-altering illnesses.

This online group will help us fine tune HelpIsHere.org to make sure it is truly a helpful resource.

So, what will your involvement entail? We know your time is limited and valuable, so you can contribute as much or as little as you want. We will pose questions to the group, like - "What do you think of the way the site is organized?” to more integral questions, such as “We are thinking of doing X,Y, and Z. What do you think?”. The questions will all be opinion based on your experience.

If you are interested, please email me at bill@HelpIsHere.org and we'll take it from there. And please forward this to anyone you think may also be willing to help make the post-diagnosis process a little easier.

Thanks so much in advance.

Just in one of those moods...

I haven't posted about Sophie lately because sometimes it is just too hard to write anything positive when I am feeling overwhelmed and sad. And I hate being negative and unappreciative of the things that Sophie can do. Especially when everyone around me points out that I am fortunate that Sophie is doing as well as she is doing. Sophie had a doctor's appointment the other day and I was told that Sophie will never be "normal" but that I should be happy for how great she is doing compared to others with her same diagnose. But sometimes it is hard for me to see. Hard to look past the seizures that she has EVERY SINGLE DAY...ALL DAY LONG. I am tired of it. I am tired of not having any answers. I am tired of none of the treatments that I research and research and research give her any relief. And now I am pregnant. How am I going to be able to divide my time between all my kids and give Sophie the attention she needs. I just feel like the older she gets, the farther and farther she is falling behind. And Elsa just keeps getting so much smarter. I am so happy for Elsa and I love that things come so easily for her but it is hard to watch her do things at 14 months old that Sophie at 42 months old cannot do yet. It is such conflicting emotions. And though her doctors are quick to point out that she is still progressing, they are also quick to point out that they don't know how much longer she is going to continue to do as well as she is doing if we don't get the seizures under control. Except no one has any answers for us. Nothing seems to work. Surgery is not an option. I feel so lost and so helpless. And guilty. Guilty for feeling this way.