April 9, 2017 The Anniversary of D-Day

EEG

One year ago today, we took our little girl to Riley and got literally the worst news we had ever heard – she has lissencephaly and she likely would never be independent. This is a date that is etched into my memory. It has been a very long and difficult year for all of us. When I am asked what this last year has been like, I compare our lives to a snow globe. Everything was peaceful and calm until Annalise had her first seizure and our lives got turned upside down and shaken up. Things start to fall back into place, and then any little thing, a more aggressive seizure, a fever, a new medication, will shake things up again and you never know when that is going to happen. 

This little girl has had a long year. She has had 5 emergency room visits, 2 hospital admittances, 2 second opinions, 1 CT scan, 1 MRI, 6 EEG’s, approximately 37 visits with her specialists, 10 different medications, 4 swallow studies, 3 types of feeding tubes, 1 surgery, 1 helmet, 2 pairs of glasses, 1 wheel chair, 1 sleep study, 6 nurses, approximately 70 hours of therapy, and hundreds of seizures. While she has had many challenges, she has also had many successes. We have had her seizures under control now for about four months. That is a huge victory. She can hold her head up for a minute at a time. Her vision has improved and she is can make eye contact and track objects. She has much better head control when in a supported seated position. We are working on independent sitting and weight bearing on her legs. She has two teeth and is going a great job eating purees and is up to about a tablespoon at a time. It may not sound like much, but for this tiny warrior, these are all great victories that we have celebrated!

Baby #3

In addition to the diagnosis, our family has also experienced a lot of changes this year. We sold what we thought was our dream house. The layout was not going to work for a child with mobility issues. We found a house that meets all of our needs and is close to our family. It's becoming our home more and more every day. I miss our old house, but we could not make it work for Annalise's needs. I started a new job in January. Once Annalise was diagnosed, I stopped enjoying being a divorce lawyer. I needed to find something that had a bigger purpose. I now advocate for the welfare of children in my new position and find it much more fulfilling. We also will be welcoming a new member to the family in September. We are very excited about the new little one that will be joining us, but, as you can imagine, this pregnancy has been scary and stressful. I will have multiple ultrasounds starting at 20 weeks to monitor brain development. If anything looks unusual, I will have a fetal MRI. We were told that Annalise's lissencephaly was "a fluke." The chances of it happening again are so slim. However, it happened once so it could happen again. I try not to think about baby #3 also having special needs. The thought of it is debilitating. 

Helmet Heads

I would love to say that Sean and I are great; that ours is a story of triumph and we have come through this nightmare. That would be a lie. We are better. We accept her condition and her limitations. We understand that we cannot change her future or guarantee that she will be with us another day. I have accepted all of these things. We provide her with everything we possibly can to get her to reach her potential. We love her unconditionally and show her every single day. We surround her with family that adores her and expose her to experiences that neurotypical children her age would be exposed to. We advocate for her and share her story as much as possible. However, we will forever be broken, changed. We have put the pieces back into place as much as we possibly can. But how do you fully heal when you know that your child, the little person that you created and love more than life, will never walk, will never talk and tell you what she needs or simply that she loves you? How do you heal when you see this beautiful child struggle to do the simplest of tasks, like lift her head or hold on to a toy? How do you relieve yourself of the guilt when you know that after a life full of struggle, she will leave us much too young?

Annalise is thriving. She is growing stronger every day and she is healthy. Best of all, she is still here with us and she is fighting. However, each day is hard. Each and every day, I have to watch my little girl struggle to hold up her head while other children her age are beginning to walk and talk. Each day, we hold our breath and hope that this is not the day that the “big bad” arrives. (The “big bad” is the term that we use to describe the next seizure type she will grow into, which can include grand mal and tonic clonic seizures. These seizures will likely slow her development.) When that occurs, we again have to start experimenting with different medications until we find something that controls the “big bad.” During this process, she will likely sleep a lot and could lose some of the skills she has learned. It is a scary thing to constantly worry about, but we know it is coming so it is hard to ignore. We try our best to take one day at a time and celebrate her successes, but it is difficult to ignore her future.

We have good days where things are fine and this diagnosis is not something that we will let define us as a family. We have bad days where we are overcome with grief. It is very difficult being around children who are neurotypical and their families and impossible to avoid. It is next to impossible not to compare Annalise to children her age or not to be envious of the relationships that people have with their older children. It is very difficult not to imagine what her first word might have been or how clumsy her chubby legs would have been when she took her first step. It is incredibly hard to hear other parents discuss the problems they have with their neurotypical children, like their child not sleeping through the night or their child being a picky eater, and not wish that our problems were so minor.  So I tend to surround myself with other parents who have special needs kiddos because they get it. It feels good to talk about specialists, g-tubes, blended diets, developmental delays, special equipment, etc. and have someone who can relate and does not think of it as a foreign concept or feel sorry for us.

Physical Therapy

Occupational Therapy

Though we are struggling and hurting, we are also thankful. We are thankful that both of these amazing children are ours to love and take care of. We are thankful for every day that the “big bad” holds off. We are thankful for every day that Annalise is healthy and for every day that we have with her. We are so thankful for our family for their support and help in dealing with this all. I do not know how we could have gotten through this year (especially the first few months) without our family. I am thankful for the many new friends I have made that I never would have crossed paths with otherwise. I have learned so much from them and their support and knowledge is invaluable to us. I am thankful for Elliot, who does not seem to care about her limitations, but instead treats her like a little princess. I am thankful for Sean, who has been so strong when I am not able.

We are so proud of both of our children. Annalise is such a fighter. She has been put through so much this year and gets through it without a complaint. Elliot is so funny, smart, and energetic and an incredible brother to her. We are excited to meet baby #3 and have such high hopes for him. In some ways, we are better people because of her diagnosis. We are more accepting of people who are different in any way. We are better parents because we had to adapt to be what Elliot and Annalise need us to be. I am lucky to have these two (soon to be three) amazing children. I will continue to be my best for them, even when that means adapting and fighting harder when our snow globe gets shaken up again, because they deserve nothing less. They have already suffered enough and I will make sure I protect them as much as I can from the challenges that lie ahead. On D-Day, instead of being sad and wallowing while remembering how our lives were turned upside down a year ago, we are going to celebrate. We will celebrate our determination to put one foot in front of the other every single day and not give up. We will celebrate Elliot, for being such a wonderful child and bringing positive energy into our home. On days that I did not want to get out of bed, he was my motivation. Finally, we will celebrate Annalise's life and health. We have no idea how long we will have her with us and I refuse to spend this day mourning the life she should have had, but instead celebrate how far she has come. 

April 16, 2016 - Hell Week

Annalise's 3 Month Photos

One week ago, my life was pretty perfect. I don’t say that because my life was flipped upside down and hasn’t been righted. I say that because I often thought it. I would often thank God for the life that I had and I wondered sometimes how I had been so lucky. Last Saturday began like most other weekend days. My son, Elliot, has a semi-new interest in dinosaurs. He is two and a half years old. He has a baby sister, Annalise, who is just over three months old. Though Elliot adores his baby sister, we try to get out and do things he likes so that he doesn’t feel jealous of his sister and all of the attention we have to give a three month old. So on this Saturday, we were going on a family outing to a dinosaur exhibit. We got to see animatronic dinosaurs. We paid way too much for our tickets so that our kiddo could get up close and personal to a T-Rex. We even bought the souvenir photo with a T-Rex. I had no idea that the silly photo we took would be the last family photo taken B.D. (before diagnosis).

The Dinosaur Exhibit

I went to buy diapers after the event. I left the kids at home with their dad, Sean, so that I could come back quickly and relax. When I got home, Sean told me that our daughter had done something very strange. He said that she was moving her eyes, arms and legs up and down in unison. He was shaken up, but he didn’t think she needed to go to the emergency room. After some coaxing from my mom and under the direction of our pediatrician, we decided to take Annalise to the emergency room at Riley Children’s Hospital. We thought they would tell us that we were overreacting and to take our sweet girl home.

            

 We described our symptoms to two of the doctors on call that evening. Neither was convinced that she had had a seizure. They said that some parts of what my husband described sounded like a seizure, but other parts were not consistent with having had a seizure. They recommended we have a CT scan. We wanted to do it to rule out any problems. I knew the results would be normal and was assured by the technician that they almost always come back normal. I was not really concerned. Mostly, I wanted them to tell me she was fine so we could get home before my son’s bedtime. I put him to bed at night and I didn’t want to miss it. It’s my favorite part of the day with him because it’s just the two of us. 

We waited and watched the clock, waiting for them to tell us to go home. We wondered how much longer. Then, she had a seizure as I was holding her in my arms. Those were the scariest thirty seconds I had experienced in my life (I had no idea that far scarier things were coming). I called out to the nurse, whose name I somehow managed to remember. She came running in, followed by a doctor. They confirmed that my daughter was having a seizure and said they were going to admit us. After that, nurses came in and put an IV in my daughter. She looked so small and helpless as they held her down to insert it. Soon after, a neurologist came in to talk to us. I learned later that her name is Dr. Brinkley. I have gotten to know her much better than I wanted to, unfortunately. She came in and said my daughter’s brain was “abnormal.” I didn’t hear anything after that. Once she left, I asked Sean what she had talked about. I couldn’t understand the words he said, either. I was in disbelief. Abnormal? What the hell did that mean? It couldn’t be. She was so sweet and perfect. How could anything be abnormal about that perfect child? I couldn’t believe it. I made her repeat this all to me again later that night. It felt as if I had been punched in the stomach – repeatedly and hard. I was certain they were wrong or had gotten her scan mixed up with some other kid’s.

            

The rest of the night was a blur. Annalise was hooked up to an EEG machine and had wires coming from all parts of her body. They moved us upstairs to the “critical care unit.” I was so confused about why they were making such a fuss. I thought they must be taking precautions and were being very thorough. I found it so strange that they would put us on this unit when there wasn’t very much wrong with Annalise except a few seizures. I still assumed we would get some medication for her and take her home in the morning. I was very wrong.

The First EEG

The First EEG

The next morning, the head neurologist came in and asked if we wanted to see her CT scan. I didn’t want to, but my husband said yes and I just went along with it. If I didn’t see it, maybe it wouldn’t be true. He showed us a picture of a “normal” brain and then he pulled up a picture of her brain. I prayed for a miracle. I prayed that the picture he showed us would look like the normal brain. I prayed that it was all a mistake. And then I saw her scan. Sure it was smoother than the first picture he showed us, but it certainly had ridges and folds! It was not possibly as bad as he said it was. The only other thing I remember from that conversation is that he said that on a scale of mild, moderate, and severe, Annalise fell in the moderate category leaning towards severe. He also said she would likely never be independent, but that kids proved the doctors wrong all of the time. The rest is a haze of doctors, confusion and tears. Every one that came into our room gave us “sad eyes.” I grew to hate the expressions that they made. I would read a mother parent’s blog about how far their liss child have come and then I would get sad eyes and go back to that dark, hopeless place that I spent much of that first week in. One doctor, maybe just starting out after medical school or even an intern, cried during one visit to our room. She lowered her face so that we didn’t see, but my husband still saw her. The situation felt even more hopeless after that.

I looked at my sweet baby girl lying in the bed with all of those machines hooked up to her. The little girl that I had hoped and prayed for. The little girl that had met every milestone so far and looked so perfect. I wondered how it was possible that that sweet angel of a child could possibly be imperfect. It didn’t make sense and it was not fair. It wasn’t fair for her, who would have to live with this. It wasn’t fair to us, who would have to adjust our lives to care for her. It wasn’t fair to her brother, Elliot, who adored her. Nothing made sense.

The next two days were a blur seen through tears. I cried so much in those first few days that I thought I ran out of tears. My mind went to a dark, desperate place. I felt like I was living someone else’s life. I don’t remember much of what happened, but I do remember the hopelessness and the constant explaining to family members of what was going on. 

We went home on Monday. We were relieved to be out of the hospital and return to our normal lives. We did not realize that we were being very naïve until Tuesday. Annalise started having seizures that morning. I called the neurologist and I was told to give her more medicine. She then started doing a new type of seizure. Her eyes would roll back into her head and her hands and feet would clench. After many more seizures and more calls to neurology, they told us to return to the ER. We threw our things back in a suitcase and off we went. The same doctor that examined her our first night was on call. A neurologist, Dr. Jackman, came back to give us our options. They could admit us or send us home with the larger dosage of medicine and see if it worked. I asked him what he would do if it was his child lying on the bed. He said he would go home and see if the meds did their job. Off we went. By that evening, we were seeing more of the second type of seizure. We were told to skip the ER and go straight up to the critical care floor. We were put back into the same room we had just left. Anna was hooked back up to the EEG and I hoped and prayed for a seizure so that they would tell us what was going on. That evening and into the next morning, she had three. I felt some relief that they could tell us what it was, but felt an even bigger loss when we were told she was having infantile spasms, which are much harder to control. She was to be put on another type of medicine to try to control the spasms. 

I learned on that day that I would have to be her advocate and fight for what was best for her. I wanted her to start her meds that very day, but I wasn’t having any luck getting an order put in for it. I finally demanded that she get her medicine and they made it happen. She screamed and cried that night. We couldn’t calm her down. We were shattered and defeated. Our little girl was suffering and there was nothing we could do. Later that day, I requested a feeding study be done. So many doctors and nurses asked if she chocked or cough when she ate that we began to worry. She did, but we thought it was normal infant stuff. I honestly thought she would pass the study. I had requested it just to be safe. Then, I saw the techs whispering behind the glass and I knew that it was not good. They started by trying to explain what the body should do. I asked her to just tell me whether Annalise would need a feeding tube and explain the rest after. She told me that Annalise would likely need a feeding tube. It felt like another punch to my stomach. We would have to learn how to insert a tube into my child’s nose. This felt less and less real.

Back in our room, I told her developmental pediatrician team that the next time they came back, they better have some good news. I was tired of hearing one bad thing after another. I was breaking inside and they just kept giving us more bad news. When they came back, we were told that the flu restrictions had been lifted and 2.5 year old son, Elliot, could come to visit us. We missed him so much! We ordered a pizza and tried to act as normal as possible. He jumped up on her bed with the iPad and said “Sister, come watch the iPad with me.”

Elliot's Visit

He treated her just as he always did and had no idea that his world had also gotten turned upside down. While he was still there, the nurse came in to give us a lesson on how to do insert the feeding tube and they let us practice with a doll.  Grandpa took Elliot to play in the play room next to ours. My husband tried first. He was so scared his hands were shaking. The tube kept coming back out of her nose. After the third try, the nurse had to do it. They told us we could try again later because we couldn’t go home until we both could do it.

The next morning, Thursday, I woke up that determined to insert her feeding tube because it was what she needed and I wanted her out of the hospital. We had been there since the previous Saturday. I inserted the NG tube on my third try. It was heartbreaking to watch her cry, but I knew it had to be done. At the next feeding, my husband did it by himself on the first try. We had already figured out how to feed her in a way that allowed us the use of both of our hands. We were becoming pros at something that just the day before had horrified us.

Becoming pros with the ng tube feedings.

I thought I would be so happy to be home. I wanted out of the hospital full of bad news and shattered dreams. However, I walked into my house and immediately wanted to leave. This house belonged to the old us; us before the diagnosis when we had hopes and dreams of our perfect family growing up in that house. We had plans of renovations we wanted to do. We were different people then. The family that came home was not the family that we had been prior to the diagnosis and we had no idea how to put our lives back together and move forward. We still are not the same people that we were the morning of April 9, 2016. I do not think we will ever be those people again.