Dominic: The Soundtrack

A couple months ago I made a "lullaby" CD for Dominic that he listens to every night when I put him to bed. They are songs that have inspired me, comforted me or simply remind me of him. I plan on bringing the CD to the hospital to play while he's in there; a small comfort of home. It's become sort of a "soundtrack" of his journey as well. A lot of them are well known, others not so much. So, I thought I'd share them!

More Than Just Enough - Sarah Whitney Ewan
Blessings - Laura Story
I Will Carry You - Selah
Your Hands - JJ Heller
Blessings - Sarah Whitney Ewan
Hymn of St. Patrick - Hope College Chapel
What Love Really Means - JJ Heller
Lord Have Mercy - Michael W. Smith
I Will Rise - Chris Tomlin
What Do I Know of Holy - Addison Road
You Said - Shane Barnard and Shane Everett
Treasures In Heaven - Burlap to Cashmere
Worlds Apart - Jars of Clay
Sweetly Broken - Jeremy Riddle
You Alone - Echoing Angels
Faith Like A Child - Jars of Clay
Be Thou My Vision - Fernando Ortega

The Final Countdown

3...MORE...DAYS. We can't wait. The last few days were awful. In our attempt to wean Dominic from Klonopin, he ended up having more seizures than he's had in awhile. It started Tuesday night and he had about 5 or 6 between 10-3 am. Then he started having them every 1/2 hour, then every 15 minutes. I emailed Dr. Chugani at 6 am and didn't know what to do. We had given him Diastat at 10:30 pm and a Klonopin at 3:00 am and he still hadn't stopped seizing. In fact, they had gotten worse. He promptly responded and thought the ER was the next step. I called Dr. Arndt's office because I did not want to deal with strolling into the ER and having to explain Dominic's situation to every nurse, intern, resident, and attending on the floor. I wanted them to call ahead and tell them we were coming and what the plan of action was. I've spent way too many wasted hours in the ER, I wasn't about to do it again. Dr. Arndt really wanted to keep him out of there as well, so he suggested an extra dose of Keppra. If that didn't work, take him in. Thank the Lord! After he took the Keppra he was out for the next 5 hours, but he hasn't had a seizure since. My poor mother-in-law dropped everything to come up here yesterday in case we needed to be in the hospital and as it turns out, we didn't. But I'm not complaining! We're just trying to get through the next 3 days and keep the seizures at bay until the surgery. This was just another reminder that this surgery is a must. There are no other options. Even "emergency" meds don't stop his seizures. I have a hard time even wrapping my head around what life will be like without seizures. Ah, I can't wait.

It's all starting to sink in. Today was Mike's last day of work for awhile. He's planning on taking a medical leave, although it's all sort of up in the air at this point. Seeing that he's the only source of income, we don't want him to take too much time off. But we don't know how long we'll be there. That's sort of our answer to everything these days - "we dont' know".  Everything is up in the air and everything depends on how Dominic does post-surgery. We're just living one day at a time right now, and I'm okay with that.

We continue to ask for prayers as Tuesday approaches. Prayers for safe travels for family, prayers for the doctors, nurses and everyone caring for Dominic. Prayers for peace and comfort for Mike and I. Prayers for Mitchell as he deals with Mom and Dad being gone and being shuffled around for who knows how long. Prayers for the wonderful people watching Mitchell :o) And prayers for the future. We don't know what to expect or what our life will look like a week from now, a month from now, or a year from now. We thank everyone for the continued love, prayers and support. We don't know how we could have gotten through all this, or how we will get through what is to come, without all the amazing people who have walked beside us the whole way.

The Real World: Detroit

Today was a long, hard, but good day. We started the morning off with family photos in downtown Saline. We wanted to get some good pics of all of us and some of Dominic before his head is shaved and has a horseshoe shaped incision with 36 staples in his head. I’m hoping we got some good ones. Mitchell wasn’t all that cooperative and Dominic was crabby; it was hot, but Melanie, our photographer, was wonderful. We’re anxious to see them in a couple weeks. You can preview a few of them here.

We then met with Dr. Sood early this afternoon. It was a good meeting, but also scary and everything is starting to feel very real. We reviewed his PET scan and found out they are NOT doing a “functional” hemispherecotmy, they are doing a real, “anatomical” hemispherectomy. They are pretty much removing the entire left side of his brain, not just disconnecting it. After his case was discussed at the neuro conference last week, they feel strongly that this is the best option. In someone as young as Dominic and with his condition (Cortical Dysplasia), keeping a portion of the brain in there is riskier because it’s harder to make sure all connections are severed. There is a higher risk of seizures returning if they do not remove the entire hemisphere. This freaked me out and came as sort of a surprise, but I understand and it makes sense. If they can’t cut all connections and the seizures return, they would have to do another surgery. This eliminates that risk. There is still a small chance that seizures could return, if there is some dysplasia in the right hemisphere that cannot be seen on MRI’s or PET scans at this point. But it’s a small chance and if they do return, they are usually easily treatable with medication.

Dr. Sood took us through the surgery, from anesthesia to cutting out a part of the skull, to brain mapping (electrodes on his brain), to the actual removal of the occipital, frontal, temporal and parietal lobes. They will keep the central part of the brain that includes the thalamus, brain stem etc. But the majority of the left side of his brain will be removed and the empty cavity will eventually fill with spinal fluid. They will reattach his skull with screws (which we’ll be able to see/feel under his scalp for awhile...creepy) and staple his scalp back together. The surgery will take about 6-7 hours, assuming there are no complications. He will go in around 7:30 am for anesthesia and will probably be out of recovery around 5-6 pm. He will be in the ICU the first night and next day. His eyes will probably be swollen shut and he’ll be pretty irritable, but he should be able to drink from a bottle by day two. He’ll then be moved to a regular room on the neuro floor and if everything goes according to plan, he may be out within 7 days. They may start PT while he’s there or they may move him to inpatient therapy for a couple weeks or they may let him go home and do therapy in Grand Rapids, it sort of depends on how he does when he wakes up. He will have a drain at the incision site to drain excess fluid. If for some reason it’s not draining correctly he may need a shunt put in. If that is the case, he’ll be in there another 3-4 days.

As far as life after surgery, Dr. Sood is not sure what will happen to his right hand/leg. He’s not sure if he’s able to move it and use it (although not well) because of the part of his left hemisphere that IS working or because the right hemisphere has taken over. This is something we’ll have to wait and see about. Although, Dr. Chugani believes he will use his hand and have similar function to what he has now. Not right away, but eventually. I guess we’ll have to wait and see. Cognitively, he’s not that far behind and because the seizures are hurting the right side of this brain, the good side, stopping the seizures will only help him cognitively. I started to get sort of worked up and Dr. Sood could tell I was getting nervous and overwhelmed. He came over to me and patted me on the arm and said, “Calm down, Mom. Everything will be okay”. I of course, being the ‘mother bear’ I am, told him “this is not like getting your tonsils out, you are cutting out half his brain!”. He turned to me and said, “you can’t think about it that way. Part of his brain isn’t working and we’re just removing that part before it can hurt the part that is working”. I know he’s right and I know this is the best decision and only option left for him, but I can’t help from freaking out. I have to remind myself that he does these all the time and has seen great success. In his 30 years, he’s only lost one patient after a hemispherecotmy and it was from an infection unrelated to the surgery. That eases my nerves….a little.

Our meeting with Dr. Chugani went well. We have to wean Dominic off Klonopin before the surgery because of the withdrawal effects. Klonopin does not come in IV form, so if he doesn’t get the meds orally (which he can’t the day of surgery) he will go through major withdrawal (similar to alcohol withdrawal) and they would have to sedate him. It’s dangerous to sedate him after this kind of surgery because they won’t know how he’s really doing. So, we start the wean tonight. Last time we tried to wean him off it, he had 15 seizures in a matter of hours. So, if that happens again we have to give him Diastat (the rectal med) until the seizures stop. This is the part where I stop, breath, and say ‘only one more week of this’.

Dr. Chugani is wonderful. He’s positive, he’s friendly and he makes me feel comfortable. He examined Dominic and thought that although he’s hypotonic (low muscle tone), he’s pretty much on track cognitively. He believes with a lot of PT and OT, Dominic will do great. He’s going to keep Dominic on Keppra and Vimpat when he leaves the hospital and probably within 6 weeks cut that down to just one med – AMAZING. I have no idea what it will be like to only give him a couple meds a day instead of ten! When we were leaving, Dr. Chugani told us we were making the right decision. There are no other options left for Dominic and we are doing the best thing possible for him. That made me feel good. Sometimes I question whether putting him through all this is best for him, but I now know that it is.

So, today was good. We feel comfortable and ready. But we were also faced with some realities that I tend to ignore. Even with all the seizures, all the doctors, all the meds, and all the physical therapy – there is still a part of me that thinks Dominic will be ‘normal’. That he’ll run, and jump and play sports and get A’s and B’s in school. In reality, Dominic will walk with a limp, no matter what. Even if he never has this surgery, because of his right-sided weakness, he will have a limp regardless.  He will never be able to use his right hand/fingers to do things that require fine motor skills. He might not even be able to move his fingers again. He may not drive because he will lose his peripheral vision on his right side. All of these things are hard to hear as a parent. Even though I’ve been told it before, there is a part of me that always thinks he will overcome the odds. I mean, look how much he has overcome so far? When he was diagnosed with IS at 2 months old, I was told kids with IS are very hard to treat, the majority are mentally retarded, some never walk or talk or go to school or recognize their family members. And look at Dominic. He smiles, laughs, babbles, rolls over, is starting to sit up and is using his right side – despite being sedated by 5 seizure meds and continued seizures. He is a little fighter and champ and no matter what doctors tell me, I still believe he will do whatever he wants to do in life. As scary and radical as this surgery seems, it is the only choice we have. If we don’t do it, he will NEVER walk, or talk, or develop normally. He will have seizures the rest of his life and be on multiple medications that don’t work. I couldn't live with myself if I didn't do everything possible to give him the best shot at life. So this is our reality. A reality I never could have imagined for him when I looked into his little face for the first time the day he was born nearly10 months ago. It’s amazing how much can change in one year. But if he can continue to endure, so can we.

Our prayers for the next seven days will be that his surgery goes smoothly with no complications. That he does not need a shunt. That he has no issues with infection. And that he would wake up and have lost no function on his right side. It seems like a lot to ask for, but we know our God hears our prayers. We have seen miracle after miracle with Dominic and we know that God has big plans for our little boy. The last few nights, as I’ve laid awake in bed praying, I have imagined myself physically handing Dominic over to Jesus. Dominic is not mine, he was given to me on the day he was born to care for and nurture. But ultimately he belongs to his Father and on Tuesday morning I will give him back to his Father and give all of my worries, fears and expectations over to Him. There is an amazing peace that comes from knowing that God is in control. Because I know that no matter what I do or think or worry about, He’s in control of everything. If something happens or if Dominic gets sick or needs a shunt or can’t move at all – God is in control. He has given us the strength we need so far and I have no doubt that He will continue to sustain us; no matter what is to come.

Getting Ready

So, nine days until the big day. We are busy preparing and getting ready for surgery. Mike and I decided to order t-shirts for our family for surgery day. We thought it would be a cool way to show support for Dominic. The shirts came in Friday and Mike and I thought it would be fun to put "Dad", "Mom" and "Big Bro" on our shirts and I made a onesie that says "I'm Dominic" for the main man. We are heading to Saline today to stay with Mike's folks for the night. Tomorrow morning we are getting family photos taken of the four of us in downtown Ann Arbor. The entire Dunlap clan was supposed to get photos August 8th, but we sort of messed that up with Dominic's surgery (sorry!).  So the photographer was kind enough to get just the four of us done prior to surgery. I thought they would turn out better if Dominic didn't have a huge incision and a shaved head. We are excited to get some good pics of the four of us, we've never gotten professional pictures of all of us.

Mike, Dominic and I will be heading to Detroit in the afternoon to meet with Dr. Sood at 2:40. We are anxious to get all of our questions answered prior to surgery. We will then meet with Dr. Chugani at 4:00.

We know this has come so fast and seems so sudden when we tell people. But we have known for months that it might come down to surgery for Dominic. The last 8 months have been hell. From the original IS diagnosis, to the ACTH therapy, to the long seizure in Feb, to the kidney stones, to the hematoma, to the "stroke" in March, to several hospital visits, to the numerous meds and continued complex partial seizures - we are ready for this. Some days Dominic has 1-2 seizures. other days he has 15 or more. There are no options left for him.  I have talked with several parents of kids who have not only had this surgery, but have had Dr. Sood perform their child's surgery. I have been in contact with the Executive Director of the Hemispherecotmy Foundation (both Dr. Chugani and Dr. Sood are members of the advisory board) and have heard nothing but amazing things about the entire team. According to him, "Dr. Chugani is an outstanding neurologist, and arguably the best Pediatric Epilepsy imaging specialist in the world. He is very active with the Hemispherectomy community and children, and with Dr. Sood. There are families who have traveled across the USA to use this team in Michigan." We feel confident and ready for this surgery. We know there are risks, but it is our last hope of giving Dominic a chance at life.

12 Days...

Until surgery day! We can't wait. Although we're freaking out and nervous and scared; we are really excited. We can't wait to see our baby off meds and not seizing all day long. His seizures are so bad that they can't even wean him off one of his meds before surgery, which Dr. Chugani really wanted to do because of the withdrawl symptoms. But, they'll just have to wean him afterwards since taking him off it now would mean A LOT of seizures. We're going to discuss that further on Monday. We meet with Dr. Sood at 2:40 and Dr. Chugani at 4:00. Hopefully we'll get all our questions answered and will walk out feeling ready to go the following week.

Only 12 more days of all these meds!

In the meantime, we are trying to enjoy our time together and just try to get through each day. Today we got a great clip of Dominic doing his new favorite trick!



We were also glad to have Father Troy come by tonight to give Dominic the sacrament of anointing of the sick. He came and prayed over Dominic for healing, us for peace and guidance, and Mitchell for patience with all of this. He will be prayed over at church next Saturday night as well.

Surprise!

So, we found out two bits of good news yesterday. First, Dominic's case was presented at the neurology conference in Detroit and all the neuros agreed that a hemispherectomy was the best decision for Dominic. Everyone was on the same page and no one thought any further testing was needed. This is great news, it gives us peace of mind knowing that there are no conflicting opinions. Second, we found out his surgery was moved up to August 2nd! Yep, that's less than two weeks away! This is great news, but also really scary and overwhelming. When it was a month away, it still seemed a ways off. Now I'm in freak-out mode. We meet with Dr. Sood on Monday and get our surgical packet of information from Dr. Chugani. This is all becoming so real, I'm not sure I can handle it.

We are so grateful that Dominic is a surgical candidate and while there are a lot of risks, it is riskier to not have the surgery. We also just can't get over the outpouring of love and prayers we have received over the past 8 months. Our close friends and family have been there every step of the way, offering support, meals, prayers and advice. There are also people I've never met or even talked to that have heard about Dominic one way or another. It melts my heart how many people are praying for us and the kindness complete strangers have shown us. God continues to bless us through so many different people all over the country.

Mike and I just want to thank everyone for continuing to lift us up in prayer. The next couple weeks and months will be difficult with the surgery, recovery and rehabilitation. We continue to ask for your prayers - prayers for the doctors who will be operating, the nurses who will be caring for Dominic, for peace and wisdom for Mike and I, and for our little Mitchell - just that he wouldn't get lost in the shuffle; that he would feel love and cared for during this time of craziness. While we know this is the right decision, we cant' help but worry that something could go wrong. And yet we aren't supposed to worry, we are told to bring our requests to God and He will give us the peace that transcends all understanding. That is my prayer - that God will hold my little Dominic through all of this and give us all peace and let us rest in His love. No matter what happens, we pray that God's will would be done and that He would give us the strength to endure whatever comes.

Hurry Up!

All dressed up

This surgery can't come quick enough! We have had two really bad days this past week. Wednesday, Dominic had 15 seizures before 1:00 pm. During most of these, he gagged or vomited and his eyes rolled rapidly back and forth. I had to give him an extra dose of Keppra and Clonopin and if he had any more seizures, he needed to be take to the ER. Fortunately, after another Clonopin, his seizures stopped. He was okay for a couple more days, only having a few seizures each day. Then last night was a nightmare. We were at my cousin's wedding two hours away and he had seizures ALL NIGHT LONG. By all night, I mean from 2:00 am until 7:00 am he had at least 12 seizures. Some as close as 3 minutes apart. We gave him a second Clonopin dose at 3:00 am and then a second dose of Keppra at 4:30 am. By 7:00, we finally called Neurology because we didn't know what to do. We were told if he had one more seizure to give him Diastat (which is a shot up the butt) and if he had more after that, to take him to the ER. Thank the good Lord that he did not have another seizure after that, so we did not need to give him Diastat. He actually had a really good day after that. He was super tired and lethargic because of all the drugs, but no more seizures. I feel like we are just trying to survive through the next month when he'll finally have surgery. Days (and nights) like this just really reaffirm our decision to have this surgery.

I love this little guy!

The Jurgensen Clan

Our Family

All tuckered out at the reception

People have questioned whether we really need to do this quite yet or why we didn't have a second opinion. But both Mike and I feel that this is EXACTLY where God wants us. He has put each doctor in our lives for a reason and we feel totally blessed that we got in to see Dr. Chugani so quickly and were able to schedule the surgery so quickly. It's a very hard decision to decide that the best thing you can do for your baby is to put him under the knife, risk his life, and cut out his brain. But this is the point we are at and we feel so at peace with this decision. We just need the peace and patience to get through the next month!

If You're Happy and You Know It

We are happy in the Dunlap house! Today we found out Dominic's surgery is scheduled for August 24th. Unless for some reason they can move it up, but August is pretty busy for Dr. Sood. So, we're planning on this as the big day. Part of me is so excited to just have the surgery, be done with seizures and meds and move on with our lives. But there is another part of me that wonders if we are rushing this. Did we try enough meds? Maybe it's too risky. Maybe it won't work. I spoke with Dr. Arndt today and he feels pretty confident in Dr. Sood and that surgery is the best option. He is awaiting the report from Dr. Chugani, along with the scans, to decide whether he thinks we should definitely move forward or if we should consider a second opinion. With as straight forward as this surgery seems, because they have a definite focus, he thinks Dominic is a perfect candidate. Only if the EEG results weren't matching up with the PET scan results and MRI results, would he suggest possible going somewhere else. Mike and I have been talking about and praying about this for awhile and anyone who knows Mike knows he doesn't make big decisions easily. Buying a house, a car, taking a new job - all these things he spends much time debating, researching and praying about. I on the other hand, am much more compulsive. So, the fact that Mike is gung ho and ready to roll just reaffirms that this is the right decision. But, it's not like buying a new pair of shoes. It's asking someone to cut out part of your baby's brain. It's a big decision. We don't want to make the wrong one.

On a lighter note, I took this video of Dominic when we were in the hospital. He was on half a dose of meds here and you can see what a happy, joyful little soul he is. Underneath all the layers of drugs and seizures is this tiny little boy just waiting to come out. I am so excited I got to see a glimpse of the real Dominic for a little bit. He even snorts when he laughs! It makes me so excited and hopeful for what he will be like after surgery, with no seizures or meds.




We also found out today that we have our first meeting with Dr. Sood on August 8th. In this meeting we'll review the surgery and get all of our questions answered. At that point I'm sure this will all start to sink in and we'll start freaking out. For the time being, we'll just try to stay positive and get through each day.

Hoping once he's off meds and free of seizures he'll start smiling in pictures instead of looking like he's stoned all the time :o)

God is Good All the Time

And all the time, God is good! We found out today that Dominic will have the surgery! I first received an email this morning from Dr. Chugani letting me know that based on the PET scan and EEG, Dominic is an excellent candidate for the surgery. He had a couple questions about how Dominic uses his right hand and arm, and said we'd talk later. He called me this afternoon and said that Dominic's PET scan showed little brain activity in the left hemisphere of his brain. Of what little part did show activity, that was the focus of the seizures. So, basically, Dominic's left hemisphere is dead. They will be removing the outer layer of the cerebral cortex, the portion that is causing the seizures. He was originally concerned that if Dominic was able to use his right hand well, that he would lose that functionality. However, since he doesn't, he probably lost that function awhile ago. Any progress he has made so far is probably due to the right side of the brain taking over that function. Dr. Chugani does not think that Dominic will lose any function after the surgery. The only thing he will lose is his right peripheral vision. But he said he'd be surprised if he had it now anyway.  It just goes to show how much Dominic has already overcome. The fact that he is progressing - rolling over, sitting, babbling, using his right arm - this is most likely due to the right side of the brain taking over. Amazing! What a little champ!

We feel incredibly fortunate and blessed that surgery is an option for Dominic. Mike and I have talked a lot and we both feel that God is leading us down this path. Three months ago, we prayed that surgery would never need to be an option, but we've come to the point that it is the only option to give Dominic the best shot at life. Dr. Chugani said that we will most likely have the surgery within the next month. No other testing needs to be done. He is presenting Dominic's case at the Epilepsy surgery conference on July 18th. This is just a chance for all the neurologists and neurosurgeons to get together and discuss, to make sure no one is missing anything and to see if anyone feels anything else should be done prior to surgery. We will then meet with Dr. Sood, the neurosurgeon, and discuss the surgery. He will walk us through what they will do, the risks/benefits and all the details of the surgery and recovery. Dr. Chugani made is sound like the surgery is pretty cut and dry - only a one step surgery and they have a definite source of seizures. Dominic will probably only be in the hospital for a week or so. He will recover for about a month and can then continue with therapy. He said that at a year post-surgery, Dominic should be med free! Unbelievable! This is such an answer to prayer, such an amazing gift, and completely crazy. I never thought I would be this happy and overwhelmed with joy that my 9 month old son is having part of his brain removed. But all I can think about is his chance at a "normal" life. A life without seizures, a life without meds, a happy life. Praise be to God!

Detroit PET scan - Day 3

I'm surprised I remember most of this day, I am so tired. Last night was horrible. Dominic wasn't allowed to eat after 2:00am, so I woke him up to nurse him at 1:30. Probably not the best idea since he was in a dead sleep, but I knew if I didn't feed him, he would be starving later. But pretty much after that until 6:00 am he was inconsolable. He was crying and fussing no matter what I did. If I put him down, he screamed. He didn't want his thumb or a pacifier. He rocked him, I walked around with him. Nothing worked. The nurse finally gave him more Tylenol and he seemed to calm down a little. But then he proceeded to have 3 seizures in the following two hours. He finally fell asleep in Mamma's arms at 6:00.

Dominic and his Mamma

Just hanging out with Mom

A happier moment

Finally falling asleep in Mamma's arms

We were then discharged at 7:30 am and sent down to the PET center. He still had the electrodes on his head because they do another 30 min. EEG prior to the PET scan while they let the radioactive dye they inject circulate through his body. Yeah, that was weird too - being told your baby would be radioactive for the next 24 hours and to keep him away from other kids. That sounds safe! Anyway, after the 30 min. EEG they removed his cap and the electrodes and we realized why this poor baby had been so fussy. He must be allergic to the paste they use to stick the electrodes to his head, because he had 26 open sores and blisters all over his poor little head. Some of them were bleeding and some still had puffy blisters and some were just open sores. The poor, poor thing. No wonder he was in so much pain. I felt so awful for him. We got him cleaned up and he went in for the PET. They sedated him and the scan took about 25 minutes. After that, we waited until he woke up, shampooed his head and slathered him in Neosporin. They wanted to have the doctor check him out to make sure the blisters weren't a reaction to the radioactive dye, rather than just the paste. Finally, after he was checked out we were released. Now I just had an hour drive to my sister-in-laws and then another two hour drive home to look forward to.

Giving him the dye

Taking off the electrodes

Poor baby, all those blisters!

Going in for the PET

It doesn't look like it, but he's happy to go home

We're ready too!

Mitchell, Dominic and I finally arrived home around 3:30 and the rest of the night was mostly a blur, I was so tired. I had emailed Dr. Chugani asking when we would get the results and he promptly responded that his EEG was currently being reviewed and we'd get the PET results Friday. I'm pretty sure we went out to dinner so I didn't have to cook or clean. Then it was off to bed. I'm very happy to be home but I am anxious to find out what the next steps are. In the meantime, we'll try to relax, enjoy the weekend and catch up on sleep.

Detroit EEG - Day 2

Today was long, mostly because we've been confined to this small room for nearly 35 hours. Dominic has been super cranky. He was up all night having seizures and can't sleep during the day because half of the slats are missing from the window's vertical blinds. He does not want to be put down and I haven't nursed him this much since he was 2 months old! It seems to be the only way to calm him down. Although Mamma did rock him for awhile today to give me a break. Because he had so many seizures last night, they decided they had recorded enough seizure activity and wanted to put him back at his regular dose of meds this morning. They didn't want him to have any more seizures than necessary but still wanted to keep him hooked up to the EEG. So, we've spent the majority of our day reading, playing cards, playing with Dominic, feeding Dominic and eating. I've never looked so forward to my next meal before, simply because it was something to do. I think we're all ready to get outta here tomorrow. The PET scan is scheduled for 8:00 am, which means we'll get out of here around 10:00. Not too bad.

Cute boy

In his new "Hugh Hefner" robe from Mamma

Thinking he's hilarious

I was so anxious for so many weeks leading up to this, and now it's almost over and I'm at such peace right now. I still don't know what Dr. Chugani will have to say - he may want to wait awhile to have the surgery, he may think that because Dominic is still developing, the risks of surgery might outweigh the benefits. Or, they might find seizure activity on both sides of the brain, which would mean surgery would not be a solution. There are a lot of things he could say. But I know that whatever he says and whatever the next steps are, I am at peace. We are just praying now that the PET goes well tomorrow and that they would indeed locate the specific area where the seizures are coming from and that surgery would be the best solution. But in the end, it's all in God's hands.

Detroit EEG - Day 1

It's 1:35 am and we're all settled in here at Children's Hospital of Michigan. Dominic, my MIL, and I arrived here at 1:00. We're nice and cozy in this little room with only a couch for a bed and a recliner. Doesn't really matter though since we're not allowed to sleep. I was actually praying that Dominic would have some seizures tonight since he hadn't had any all morning or afternoon, despite being on only half of his normal dose of meds. I figured that would be my luck that we would spend 3 days here hooked up to an EEG and he wouldn't have any seizures. But, I was not disappointed. At 10:20 pm he had his first and he has pretty much had one about every 20 minutes since. They are much more intense than his usual ones. He projectile vomited during one of them. During his second one, it was getting close to 3 minutes and all these doctors and nurses came running in scrambling around to find his monitors and emergency meds. But, he's a little trickster and seems to come out of them on his own right around 2 1/2 - 3 minutes. You would think by now I would be used to this, but it never gets easier to watch your baby seize. Especially when all the doctors and nurses around him seem to be freaking out and getting the oxygen mask and IV meds ready and waiting by his bed. But, this is what we're here for.

Super Duper Trooper

I'm wide awake thanks to the latte my mother-in-law got me about two hours ago and am just sitting next to his crib, waiting for the next seizure. I think, because he has had so many seizures since 10:20, that they may go back up on his dose of meds. But we probably won't know until the morning. They also have to cath him to get a 24-hr urine collection (ordered by his nephrologist in regards to his kidney stones). I think tomorrow will be a long day with no sleep, but I am so, so, so grateful to have my mother-in-law here. She keeps a steady supply of water, snacks and coffee coming. She is amazing and has stayed awake with me the whole time. She's got her watch ready as soon as he has a seizure and times them for me. We played a few hands of 500 Rummy before the seizures started and I'm pretty sure she's going to make a midnight (or I guess early morning) Subway run for us :o) I don't know how I could have managed this without her. She rocks! But I'm pretty sure we'll both be zombies tomorrow. I'm planning on posting each day were here, simply because people keep asking how it's going and I don't want to have to retell everything over and over again. Plus, there really isn't anything else to do here. So, until tomorrow....

Starting at Goalie...

Dominic at Goalie

Dominic is looking more and more like a hockey goalie after this week. He finally got his helmet, along with his leg stabilizers. He's not a huge fan of either, but he's being a good sport about it. We're hoping he won't have to wear the helmet more than a few months. He only has to wear the leg stabilizers a few times a day and at therapy. He should be getting his arm stabilizer in the next couple weeks too. So pretty much he will be covered head to toe in orthoses with the exception of his left arm. The poor kid :o(

Dominic has also continued to have seizures, despite upping his meds. On Wednesday, I was on the phone with Neurology at midnight because he had had 8 seizures in two hours. He has been holding his breath and vomiting when he has seizures which has really started to freak us out. I barley sleep because I'm worried he'll choke on his vomit or stop breathing altogether. The nurse suggested I make sure I'm comfortable with infant CPR. No biggie, no reason to worry, right? I really, really hope it never gets so bad that I need to give my seizing baby CPR. Just another reason I'm anxious to get to Detroit and to get this process moving. Fortunately, we were very lucky that Dominic had a good couple days so Mike and I could get away for our anniversary for a night. We were nervous about leaving him overnight with my parents, not only because of the seizures, but also because of the stress of giving him 8 meds twice a day, the helmet, the SPIO vest etc. It's quite a bit of work looking after this little guy! But as it turned out, Dominic didn't have one seizure while we were gone, praise God! We definitely needed a night away. It was such a wonderful gift to be able to relax and enjoy time just the two of us, without the stress of our daily life.

Treadmill Training at PT

Working on Standing

Dominic, Mitchell and I are headed to Detroit Tuesday morning. Mike needs to stay home and work, so my wonderful sister-in-law is taking Mitchell for the three days we're in the hospital. And my mother-in-law, bless her heart, is going to stay with me in the hospital the entire time. I heard from Dr. Chugani on Friday and it sounds like we'll get the results from the VEEG and PET immediately. Depending on the results, he will review them and put together a surgical plan. There is still a part of me that worries that Dr. Chugani will say that surgery is not going to be an option. Even though he has definitely been diagnosed with Cortical Dysplasia and the seizures have always consistently been complex or simple partials, which indicates they come from only the left side. But I suppose there is always a chance that surgery would not fix the problem. But we continue to pray ferociously that surgery will be the cure to his epilepsy and heal him of the seizures. In the meantime, we are trying to get through each day with a smile on our faces.