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