Dad's Turn

I've heard it through the grapevine (i.e. my mother) that there have been some requests to have a post from me, Dad. Laura is a talented writer, and we usually discuss what she's going to write about, so it's not to say I'm not involved in the blog, I'm just not the person writing it. That being said, Laura also thought it would be a good idea to share with all of you my perspective regarding Dominic's journey.

It's hard to believe he's only ten months old. He's been through more medically than I've been through my entire life. People have often asked me how I deal with this and still get up every morning, go to work, and try to push through the day. To be honest, some days it's very difficult. If Dominic's been up all night having seizures, not only am I sleep deprived, but my mind the next day is constantly thinking about him. The only thing I can say is that you learn to adapt. I still need to provide for my family. These have been the cards that we've been dealt. I can either sulk in my own misery, feeling sorry for myself and Dominic (which I have on many occasions), or I can push through it, putting one foot in front of the other. I try to do my part as a father. I've particularly tried to give Mitchell some much needed attention. Laura and Dominic are constantly running to therapy sessions and doctor visits. He spends a good deal of time at the nanny or with family members. I try to play with him as much as possible, knowing that Dominic has been a focus for me and Laura for most of the year. Again, you just try to put one foot in front of the other, one day at a time. I try to do what I can and give the rest to God.

Many people have commented to both Laura and I that they admire us for our faith during this trial. To be honest, there have been countless times during these past 8 months where my faith has been shaken. At times, I've been very angry at God. There have been countless nights where I've laid in bed and said, "God, if you want to heal him, you could do it right now. What do I need to say to make that happen? Give me the seizures. Let me deal with the pain and not this baby." I've seen other people with healthy children and there's a part of me that says, "Why have we been handed this cross? I should be helping my son learn to sit up and crawl instead of giving him an injection in his thigh." However, I keep coming back to my faith, because that's all I have left. I read a book called "The Promise: God's Purpose and Plan For When Life Hurts." I'd highly recommend it. Life is full of trials. No one is immune to suffering in this lifetime. Dominic has taught me so much about suffering. Many times he comes out of seizure and he gives me that angelic smile of his, as if to say, "It's okay dad, we'll get through this." Our faith teaches us that God can bring great good out of times of trial and suffering. Look at the Resurrection. That continues to be my hope today. On our homepage, we've listed the verse from Isaiah where the Lord says that he will raise us up with his victorious RIGHT hand. I find it ironic that Dom's weak side is his right. He may not ever have fine motor skills in that hand. I may not understand why we are dealing with this, but a greater good will come out of it, either in this life, or the next. God does have a plan, and it is good.

Shifting gears a little bit, I also wanted to take this time to say that I really don't know how I could have gone through these past 8 months without my wife. If you haven't noticed, she's awesome. She is the one constantly giving medications, tending to Dominic's and Mitchell's needs, dealing with doctors, nurses and insurance companies. She has more knowledge of Dominic's condition than most resident doctors. Her strength and example through all of this has been incredible. It's funny, when Dr. Chugani first met Laura, she knew so much about Dominic's condition that he asked her if she worked in the medical field. Nope, that's just Laura.

Well, tomorrow is the big day. I wouldn't say that I'm nervous, just very anxious to get this over with. I'm ready to give Dominic a seizure-free life, even if that means living with half a brain. I'm ready to see him off medication. I'm ready to see him grow up, even if it means walking with a limp or being behind in some of his subjects. We have no other alternative. I'm ready to kick these seizures out of our house and tell them never to come back. People have said that it must be a tough decision to go ahead with this surgery. My response has been, "It's a no-brainer."

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.