Finding my voice....

Trauma. I used to think this word only belonged before the word "unit." You know, like at a hospital. People who were severely injured due to an accident of some sort. I had heard this word in connection to war of course too. Soldiers seeing some awful things performing heroic acts in battle. I never thought this word though could be used to describe my life's experience due to my daughter's epilepsy and developmental delays and sensory processing disorder. Apparently I have been through more than my fair share of trauma in the past 7 years. I know this because clinically I suffer from PTSD....you know...like a war hero. In no way am I diminishing what a brave soldier has gone through. I am only astounded that I too have been through trauma just as bad. I have seen my beautiful daughter go through so many horrible things....endless seizures that knock her on her back, breathless, helpless, unconscious and fighting for her life.....DAILY...EVERY.SINGLE.DAY. Morning seizures have become customary. So customary that I had to hire help in the morning to take care of my other precious daughter while I hold, soothe, cry for and pray for my sweet Lily as she suffers from these awful seizures that have stolen so many moments of her life.

I have been silent for a long time here. In this blog. Does anyone even read blogs anymore? I have been hiding. Hiding from others seeing my real experience in the crazy journey we have been given. You see I am a perfectionist. I suffer from thinking that everything needs to be just so. My home must be clean and tidy at all times, my menu for the week must be well thought through and put on the side of the fridge for all to see, my classes must be well thought out each week, my choreography must be prepped and ready to go, my laundry must not be piled up, my workout regimen must be followed to a tee, and my kitchen should look like a replica of Joanna Gaines'. I know this sounds silly but my type A personality just thinks this way.... daily. It's exhausting. I know this and truly in the back of my mind there is an inkling of grace I give myself when it comes to all the things but boy howdy do I struggle. Daily. I want to control my life's experience and I do take control of the things I can control...my house, my laundry, my lesson plans, etc.... But the one thing in this life I want to control more than anything, I can't. The one thing in this life I want to fix and place on a shelf is totally out of my control. And in my perfectionistic mentality I sometimes think that I might able to. "C'mon Theresa Why did you turn on the light? Maybe that causes the seizure." (Sometimes lights can cause seizures) "Maybe if you give her meds earlier that would help." "You aren't giving her the right meds Theresa...it's your fault...fix it. Call more doctors. Research more." These thoughts about how I can fix Lily's seizures torment me daily. Because I want to control it so badly. Crazy right? Yes I am a work in progress...

After Lily Kate's first hospitalization due to status epilepticus I learned and even deeper sense of my inability to control her seizures. After seizure number 40 I threw my hands up in the air and felt totally numb. I have never felt more hopeless and helpless than I did that day. I was mad. Distraught. I was faint. I was not well in dealing with my daughter almost dying.

For a week after Lily Kate's hospitalization I felt anything but normal. Making sense of what I had just been through that week was tough. It was so strange to me that life resumed the way it always was after we got home. We made dinner, we went to the gym, we had BBQ chicken on the 4th of July, we watched "Outlander." And then it occurred to me that I was the only one thinking that this picking-up-where-we-left-off business was strange and felt somehow wrong after what we'd been through. After all, I had just been through something traumatic. And I keep going through something traumatic each day. And I march on. Not perfectly. But I march on and do the things I need to do for my family...while feeling helpless, hopeless, and in despair. The sadness is so deep and real at times I don't know if I will survive it.

But I do. I go to therapy, pray, sing songs about how God is good even if I question it sometimes, take my meds, and pray that a support group will magically appear in my home each Saturday. I am strong. Maybe that war hero title isn't so far fetched after all... I work daily on self-compassion. Bettering my thought process so I can stay strong and connected to my Creator.

But in the past 7 years I lost my voice... My voice that shares my experience is important to me, I discovered. Sharing my challenges might draw the ones that care a little closer...and I need that. I need comfort, love, hugs, words of encouragement. And it's ok to need these things. So here is my voice. This is my journey. Lily Kate's journey. We are marching on in the midst of the storm giving voice to our life for all to see.

Inhale...exhale...repeat...

Making myself a salad in my home is an act of courage. So is walking into another room or changing Lily Kate's diaper. Answering the phone is probably the most daring task I can attempt. Why? You might ask. Because it's usually met with painful pinching and protests so loud that the thought of making the call or answering the call seems like the biggest mistake I could've made that day. God forbid I answer a call from a client or her teacher. The world seems to come to an end unless Lily Kate gets exactly what she wants. The problem is that she cannot communicate her wants and needs. Thus, non-compliance has become Lily Kate's way of communicating lately. She can be aggressive, loud and out of control in her attempt to communicate her needs. I try to imagine what it must be like to be incapable of that very simple thing...saying what it is you need. So I struggle between heartbrokenness and anger for having to deal with it. Everything becomes about what we can do to not piss her off. I tip toe around praying that she doesn't have another breakdown. And I hold my breath when I feel one about to happen. There are few breaks and breathers in my day; partially because I have 2 very demanding young children but primarily because we can't seem to get a grasp on how to help Lily Kate. It's so frustrating! Every therapist and behavioral specialist says the same thing, but they aren't living it day to day so do they really understand how to help? When I started this journey I was much more optimistic. It seems with each new challenge my hope lessens and anxiety rises. I got to a breaking point recently and my stepmom and dad swooped in to rescue me for a week. My sweet dad drove more than halfway to San Antonio to pick up Lily Kate so that my precious stepmom, mom and dad could take care of her all week long.

During that week they faced the same challenges and frustrations that I face on a day to day basis. I finally felt validated for this first time since this journey began. It was as if someone finally understood. The day to day challenges that wear on me so much. The depression that all of this has created. The hopelessness I feel in waves. That day it felt like my world was coming to an end, but in one simple text from my dad "I'll come get Lily and take care of her for the week" took more weight off my shoulders than I can describe. I had a whole week without worrying about what would happen if I made myself a salad or what would happen if I decided to sit down to rest for 1 minute. I could breathe a little easier. We spent that week doing "typical" things that "typical" families get the luxury of doing. Going out to dinner, going to a birthday party. We even had a family movie night in sleeping bags with popcorn and candy! I cherished each moment and I'm forever grateful to my sweet family who took my burdens for a week. My soul was restored.

But I missed her so much. I thought about her each day and missed all the sweet little things Lily Kate does by just being Lily Kate. I missed her smile, her laugh, her snuggles, her hugs, and sweet spirit filled with endless innocence and love. She brings something so special and unique to our family. And while I don't yet know the end result of all this, I do know that each day is a lesson and a chance to practice unconditional love, patience and strength. Maybe I'll be an expert by the time I'm 70 God-willing, but for now I'm still learning to inhale and exhale moment by moment to give Lily Kate my best. Most days I fail. Some days I do better than others. Each day whether I recognize it or not I'm thankful for God's grace. I hear a little voice sometimes saying "It's ok Theresa. It's ok to not do it perfectly." That voice had faded out completely by the time my dad sent that text, but a week later I heard it again. For that I'm very grateful!

Messy

I have been avoiding posting here for a while now. So many thoughts run through my head in my avoidance..."I don't want people to think I'm complaining..." "Does anyone really care about this journey?" "I hope people don't think I'm writing this to glorify my own pity party." Blah, blah, blah, and so the self-talk continues in this unexpected journey. But then another thought came to me... "It doesn't matter." And it doesn't matter. I write about her because it helps me to cope, helps me to see how I'm processing all of this, helps me to see that there truly is something to process that is much bigger and serious than I ever thought. It helps me...and well I guess I need help. Don't we all need help with something? I think we all know the answer to that. I am not perfect. I am not the perfect mom and never will be. I am not more special than another mom who does not have a special needs child. I am me. And everyday I struggle with accepting "me." "Me" who has always struggled with perfectionism and for everything to be just right. I think I still experience a great deal of shock when things don't. Actually I know I do. Perhaps that is the problem... Maybe I've been avoiding this blog because I don't want others to know how utterly shocked I am at how messy all of this is. Messy is uncomfortable. I can't stand for my house to be messy, so I am constantly picking up...ALL the time. I can control how unmessy my house is to a certain extent, but what I cannot control is how unmessy my journey is with my precious daughter. So here is my very messy update raising 2 girls under the age of 4, one of which has many special needs.

Lily Kate is 3 now. It has been almost 3 years since we found out about her diagnosis. Three long years of seeing so many doctors and therapists with so many different opinions. It's so weird how my perspective has changed since the beginning of all this. At first after the initial shock of finding out I was so hopeful and filled with this fire thinking "if I can just get her to enough therapists then maybe she will be ok." Then as she got older the realization started sinking in... The reality of her falling further and further behind. The reality of her 1 year old sister passing her developmentally at 15 months of age. My hope slowly faded like a tire running out of air with just a tiny prick in the rubber. I didn't see my hope escaping me it just did. But as that particular hope escaped I found myself finding a new one. A hope that really just hoped that she would survive those seizures where she turned completely blue, or that she would learn to put 2 words together, or a hope that just accepted whoever she was going to be. I will never forget the words of my precious cousin Ashley that still ring in my ear from time to time, "She is going to be who she is going to be Theresa." She was so right and still is. This journey is after all one of not only accepting who Lily Kate is and will be, but a journey to accept who I am and will be. I haven't been doing a perfect job in dealing with the multiple behavior issues we've had these past 6 months. We were told that Lily Kate presents behavior at times that can be similar to Autism. She gets very irritable and NOTHING I do can calm her down. I try everything. And after I try everything that doesn't work I remember how imperfect I am because I fail every single day. I am worn out. And so is Casey. But it is ok. And I try to remember that just because her behavior is out of control at times doesn't mean that it always will be. That this is a journey for both of us to get better at the challenges that stand in our way. And sometimes I find that new hope again. I see a glimmer of her behavior getting better and that gives me so much joy.

We have surgery this Friday. Lily Kate is undergoing surgery to install a brain pacemaker called a VNS (Vagus Nerve Stimulator). They will do an incision in her neck and chest. The magnetic pacemaker will be in her chest and the magnetic coils will be in her neck. Every 30 seconds the magnet will go off and send an impulse to her Vagus nerve that goes directly to her brain. We have been told that this can help with seizure activity which she has been experiencing more of lately. It can also, although its not guaranteed, help with behavior, development and sleep. We are really hoping that God is going to use this for her benefit and our family's benefit. I'm terrified that my sweet 3 year old is undergoing surgery. She is scheduled to have it on Friday May 1 at 9am. Please say a prayer for her and my family if you think of us this week.

Love to you all, Theresa

Accomplishments 2014!

I have a confession to make...I have been in a major funk for about 3 months now. I haven’t been able to shake the trials that we’ve faced recently. Usually my one bad day is followed by many good days and I can recover, but lately the bad days have been lengthier than the good ones. To be honest they have been more than I can handle. As I look back on the past few months I am in awe that I made it through. There have been so many setbacks with Lily Kate getting ill so often. BUT Praise Jesus that they have just been setbacks, which by definition is “a problem that makes progress more difficult or success less likely”… “Less likely, more difficult…” But not impossible. So progress has been paused, but prior to these “setbacks” there are so many things Lily Kate has achieved this year. Here are a few of them: SHE LEARNED TO WALK!, she is beginning to connect two words, she can climb and go down stairs with assistance, she can feed herself yogurt with a spoon with some assistance, she can almost climb onto the couch by herself, she can stay focused coloring for about 5-10 minutes, she can interact with Maddy Beth (a year ago she wouldn’t even go near her), she is intermittently using her “pointer” finger and pincer grasp, she can take off her shirt with assistance, she can turn off the light switch, she can throw a ball with 2 hands, she can slide down a slide independently, she no longer has to have her liquids thickened, and she is beginning to communicate her needs and wants to us without prompting. I’m so proud of all she has accomplished this year. I have high hopes for 2015! “ But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”- Isaiah 40:31

Lily Kate 2014 Update

Regression. A word I have feared from the beginning of Lily Kate’s diagnosis. I remember Dr. Dobyns saying from our Seattle Children’s Hospital visit in February of 2013, “If she’s regressing then she’s having more seizures…” along with the dreaded words “She’s doing well now, but she may not always be doing this good.” I remember feeling terrified walking out of his office that very cold February day in Seattle. Thinking to myself, “What does the future hold? What will she be like? What does this mean for Casey and I?” Those same questions haunt me everyday along with a million other “whys?”.

The past few months have been the most difficult thus far with Lily Kate. Back in late September we went to Dell Children’s Hospital in Austin to do a 48 EEG and Brain MRI to see if we could catch any seizure activity that we weren’t catching. Prior to our visit things were going ok. Lily Kate was walking better and progressing…slowly…but progressing nonetheless. The first day in the hospital they began weaning her off of one of her medications and the following day the child couldn’t walk. So naturally I thought she was having a reaction to the wean. Her doctor assured me this wasn’t the case. So after a week of vomiting, one ER visit and not walking we were puzzled but walked away from that crisis somewhat unscathed. Ten days later Lily Kate got a cough and fever and was diagnosed with a sinus infection. Since then she has been sick off and on for the past 2 months. I know what you’re thinking… A sinus infection? Fever? Just part of being a kid right? Yes, but when Lily Kate has a fever she has Febrile seizures. And having a fever every 12 days is the perfect recipe for prolonged Febrile seizures. Our most recent crisis included being ambulanced to Children’s Methodist ER because she stopped breathing during a febrile seizure. And then shortly after that we had another ER visit on our Thanksgiving vacation in California visiting family. After two months of increased seizures, constant fevers, coughing, inhalers, cold compresses and many sleepless nights I finally took her to an immunologist. The lab work indicated that there is nothing wrong with her immune system, but that she just never recovered from her initial sinus infection. Lovely. But we press on... Even amongst the regression we see in her. What else can we do? This is our journey. And although sometimes I don’t feel it, I know that Jesus is walking alongside Lily Kate and our family. I know his hand is over my daughter protecting her from worse things I don’t even know about. His provision may not be seen but I know its there. And part of his provision is providing options for care for precious Lily.

We recently saw Dr. Clarke (Lily Kate’s epileptologist/neurologist). Our next steps include getting new AFOs (Ankle Foot Orthodics) to help her walk without falling, and a test called a magnetoencephalogram (MEG) which is a neuroimaging device that measures magnetic fields in the brain. The MEG study will look for the location of unwanted discharges in her brain activity. A VNS (Vegal Nerve Stimulator) looks to be in our immediate future, which will require a surgery. And her doctor also keeps mentioning brain surgery, which I can’t even begin to imagine. And fortunately Dr. Clarke will be leading the study for Cannabis (Medical Marijuana) at Dell Children’s in the Spring and will most likely be able to try it under “Compassionate Use.” Hopefully these treatments will help her and she can begin to once again PROGRESS and not REGRESS anymore.

Lily Kate will turn 3 on January 4th, 2015. The day after she will begin PPCD through Northside ISD. PPCD stands for Preschool Programs for Children with Disabilities. She will attend school 5 days a week for 3 hours per day. Although I am anxious about not being around her near as much each day I know this is what’s best for her. I’ve been told that children in the program excel and progress very quickly. I’m so excited to see how Lily Kate does! I know she will do great because she’s truly a great kid. I'm honored to be her mama.

Please keep praying for her. And for me…to have peace in this journey and to stay courageous. For Casey, to continue to be my rock. And for sweet Maddy Beth, to have a tender heart for her sister as she gets older. I love you all. ~Theresa

Ketogenic Diet

Anti-seizure drugs suck. Lily Kate just began a new one called Banzel and so far it has caused her to be a complete zombie until about 12-1pm, be really moody and stutter her words. Every single day is a challenge as it is, but when a new medicine is introduced I have no idea what my life or her life will be like for the next month. Her life is being stollen from her because of these drugs at times. We can't go to the playground or gym because she's so moody and drowsy that she can barely keep her eyes open. And because she's so moody she refuses to eat her Ketogenic meals that Casey and I spent 5 hours making last weekend. So the potential for seeing the real possible positive effects of the diet are lessened significantly because she won't eat half of what we are giving her. If you want to read about the Ketogenic diet please read below. All information is from the Charlie Foundation, a resource for the Ketogenic diet for epilepsy. Oh how I've been praying that this diet will work for her. I will measure out grams of Coconut oil 10 hours a day if it will allow her to come off of some of the medication she's on. Please Lord let this be our answer! Romans 12:12 "Rejoice in hope, be patient in tribulation, be constant in prayer." Please pray for us as we journey through these trials and of course for Lily Kate that she would be healed.

Frequently asked questions about the Classic and Modified Ketogenic Diets
1. What is the ketogenic diet?
The ketogenic diet is a special high-fat diet that is used for difficult to treat seizures. Heavy cream, butter and vegetable oils provide the necessary fat. The diet also completely eliminates sweets such as candy, cookies, and desserts. Other carbohydrate rich foods such as bread, potatoes, rice, cereals, and pasta are not allowed on the strictest form of the diet, but are allowed on more liberal forms of the diet. All foods must be carefully prepared and weighed on a gram scale. Each meal must be eaten in its entirety for the diet to be most effective. The Classic diet consists of a ratio in grams of fat to non-fat (protein and carbohydrates) of 4:1 and 3:1. The modified ketogenic diet consists of ratios of 2:1 and 1:1.

2. Who can be helped by the diet?
Children with seizures from infancy through the teenage years may be helped by the diet. There is no way to predict beforehand whether it will be successful. Traditionally the diet has been used for children with myoclonic, atonic and tonic-clonic seizures. In every decade since the 1920’s, studies consistently show that 50-75% of children with difficult to control seizures of all types are helped by the diet. Creative recipes have helped to make the diet more palatable in the past few years.

3. How effective is the diet at controlling or eliminating seizures?
Four major meta-analyses (reviews of many studies) have been published in the past 10 years and have determined that the ketogenic diet is effective in reducing seizure frequency in children with difficult-to-control epilepsy. A controlled study published in 2008 revealed that seizure frequency after 4 months was significantly lower in 54 children on the ketogenic diet than the control group of children who were on medication therapy.

4. How does the diet work?
No one is certain how the diet works. A metabolic change occurs in the body which affects brain chemistry. Despite many hypotheses, the mechanism by which the diet works to control seizures remains a mystery. Scientists in several laboratories around the world are working to unlock this mystery with animal studies.

5. How is the diet prepared?
A calorie level is determined by a dietitian for each child based on their age and activity level. To achieve a desired level of ketosis, the diet is calculated in terms of ratios such as 4:1, 3:1, and 2:1. In a 4:1 ratio, there is 4 times as much fat as there is protein and carbohydrate combined. The dietitian devises meal plans that complete the required fat, protein and carbohydrate for each meal. Each meal plan indicates the exact gram weight of each food which must be weighed on a gram scale. A typical meal includes a small amount of fruit or vegetable, a protein rich food, and a source of fat such as heavy cream and butter or vegetable oil.

6. Will anti-seizure medications be reduced after my child goes on the diet?
If the child is on more than one anti-seizure medication, one may be reduced as the child starts the ketogenic diet. The reduction of remaining seizure medication may be made if the child’s seizures improve over time. Some children are able to have their medications completely discontinued. Medications may act stronger with the ketogenic diet therefore close medical monitoring is necessary.

7. How do you begin the diet?
The diet is started under close medical supervision. The diet is begun gradually and increased to the full amount over a 3 to 4 day period or longer. During this time blood sugar and ketone levels are monitored. A fasting period is not necessary to start the diet according to recent studies.

8. How soon does it take for the diet to reduce or eliminate seizures?
The diet can become effective immediately or can take several months. Each child is unique and has different seizure patterns and frequency. There is usually improvement within the first 10 weeks on the ketogenic diet.

9. What would happen if my child “cheated” on his/her diet?
If a child ate or drank something that was not part of his/her diet, they could experience a seizure within a short period of time.

10. Is the diet healthy for my child?
The diet alone does not contain enough vitamins or minerals. A nutritional deficiency could develop without supplements. Special vitamin and mineral supplements are prescribed for each child while on the ketogenic diet. It is also important that the child drink adequate liquids while on the diet.

11. How long is the diet used for?
The diet is generally used for a period of up to 3 years if it is helpful in reducing or eliminating seizures. If the diet is not helpful, it will be stopped within a few months.

12. Are there any adverse effects of the ketogenic diet?
The most common adverse effect of the diet is constipation. There are dietary options to prevent this problem including eating high fiber vegetables that are allowed on the diet and drinking enough water. A less common adverse effect is kidney stones. This problem can be prevented by making sure that the child drinks adequate water. There are two anti-seizure medications which can cause acidosis and kidney stones which should be monitored very closely when used with the ketogenic diet (Zonegran® and Topamax®).

"Lily Kate UP!"

So much has happened since my last post in October. That blog focused on our first time giving her Emergency seizure medication (Diastat) for the first time.  Since then we have given it to her over 30 times.  Needless to say our seizure control has not changed much.  We are still doing the Modified Atkins Diet (MAD) for seizure control in addition to 3 different medications that are administered 3 times per day.  We return to the doctor in a few weeks to see what our next steps are.  I'm pretty certain that we will begin the Ketogenic diet to help with control.  The Keto diet is an extreme diet where the majority of calories (80%) come from fat.  Think butter, coconut oil, whipping cream, nuts, mayo, etc...  The idea of the diet is that the body teaches itself to burn fat rather than carbohydrates by omitting carbs almost completely.  By teaching the brain to run on of fat instead of glucose there are less opportunities for the brain to misfire.  The diet raises ketones thus helping with seizure control. (Experts aren't exactly sure how this diet works but it does for some.) However, the diet is only effective for 50% of children that try it.  Let's all hope this is what works for her.  Also, since October Lily Kate got a baby sister!  Maddy Beth was welcomed into the world on December 22, 2013.  She loves to eat, cry and be held.  =)  Lily Kate is slowly becoming ok with not being the only princess in the house.  And every time she says her sister's name (Maaaa-Deee) she also says the word "cry".  

We are so proud of our Lily Kate.  Although she was a little stressed out at first with Maddy Beth's presence she is overcoming all the change.  Lily Kate is walking and standing up unassisted!  She's not quite ready to go out on a playground and play by herself because her balance creates such an obstacle for her.  Regardless she is doing well.  Thank you Lord.  I often wonder what things the Lord is already protecting Lily Kate from.  I'm certain there are much worse seizures He is protecting her from and worse developmental delays he is protecting her from.  Who knows what else!  Even though the road is tough it could always be tougher.  I'm thankful for how far Lily Kate has come!  She reminds me that each day is precious and a special gift.  May we forever stay in the moment and rejoice in it!

Here's a video of her standing up and walking.  Maddy Beth is our background music.  =)
Lily Kate Update 2014