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just another day….

ellie and dr kilbaneThe past week has been such a whirlwind of emotions. We have never felt so loved and supported. But there is also the realities of the day to day stuff that seems to be the hardest. The smallest things lead to the biggest meltdowns. I woke up with a migraine and didn’t feel like facing this reality again today, but that’s not so much of an option. Today was technically a homeschool day, but Lilly has been sick this week and Ellie is still not able to really focus to get any work done. She hasn’t been in school since last Thursday. She tried to go to school on Tuesday but every time we are in the car, she goes nuts with her stomach (which is all mental most likely) and we had to turn around and go home. I was so looking forward to working out and having that time by myself on Tuesday but I was back home with the girls. All I want is 5 minutes to myself but that hasn’t happened and right now it feels like it will never happen again. Good gosh I am EXHAUSTED!

 

I took Ellie to our integrative pediatrician today, Dr. Sheila Kilbane. She is working with us in conjunction to Dr. Latimer. Dr Kilbane is trying to get Ellie’s gut on track. Ellie already has a weak/leaky gut having celiac and now more than ever it is important we get her gut healthy! We got several different supplements to help with this. We specifically needed a probiotic with the strong antibiotics she is taking. Did you know there are several strains of strep in alot of probiotics?!? So I really needed guidance on what supplements to give Ellie from Dr Kilbane. I love having a great relationship with her and know she is 100% on our team and so supportive. We brought home 4 different supplements and will start each of them, one at a time to make sure her body is not having a negative reaction to them.

 

I think some of the things that no one ever really talks about (or at least I don’t hear about) is the stress and the toll this all takes on your family and marriage (and obviously your finances).  Steven started working a job on the other side of town and has to leave early and doesn’t get home until late. This is a much different schedule than we have been living for the last four years. We are doing everything we can to make ends meet and pay bills and pay for doctor’s appointments and medicine, that it is draining us. We are both exhausted and haven’t hardly talked all week and when we do, we are short with each other and just completely irritated. He is very internal about how he handles things and obviously, ya’ll realize I say it like it is and don’t hold back. It is hard. It is hard not letting this play a part in how you handle your life and your marriage. It is hard not letting this affect how you feel towards each other. I got frustrated he didn’t ask me certain questions from our doctor’s appointment in DC…..why? That is so stupid. He isn’t a mind reader but sometimes I feel like I need him to be, which I know is completely unrealistic. I feel like a neglectful parent because I can’t give Lilly the attention she needs and deserves. I need to help her with homeschool but the minute I give her one ounce of my attention, Ellie loses it and acts out to get my attention back. Lilly is the sweetest, most kind hearted child and I just pray I am not screwing things up. I think watching her sister go through all this will teach her valuable lessons in life but I really pray she doesn’t feel like I have neglected her or don’t love her as much as her sister. She has her first middle school semi-formal this weekend and I am excited to help her get ready and take her there. Just that car ride by ourselves (hopefully) will be such a special time to share. She is growing up right before my eyes!

 

No matter how hard the day to day is, no matter how frustrating it can get, we feel your prayers and your love. I have so much hope and feel so encompassed with prayer. I feel God’s presence and I know He is here guiding us and bringing the right people and medical team in our life. There have been countless people who have been true angels. I can’t thank ya’ll enough. A former couple of ours that we shot their wedding 3 years ago have set up a donation page to help us raise the funds for Ellie’s iViG treatment next month. (CLICK HERE). I also designed some fun tshirts as a fundraiser that I listed for sale in my etsy shop (CLICK HERE FOR SHOP). We will be adding more products in there too as a fundraiser.

 

I am determined to be a voice and an advocate for not only MY CHILD but OTHER CHILDREN dealing with PANDAS or PANS! It isn’t okay that insurance doesn’t cover this treatment. It isn’t okay there isn’t more known and every doctor in America isn’t in the know about this disease. A family shouldn’t have to choose whether to pay their bills OR be able to pay to take their child to the doctor for treatment! There has to be something done and I am so stubborn, I can promise you, I won’t stop advocating until PANDAS/PANS is viewed as like other terrible disease and is covered without question from insurance companies and doctors everywhere know the proper signs and treatment.

 

This blog post might be all over the place. Its 2am Wednesday (technically Thursday morning) and my brain gave up on functioning this week 🙂

 

xo

lucy signature

 

 

  • February 3, 2017 - 3:56 am

    Amanda - You can do this! So many things you wrote here – I KNOW. I know EXACTLY what this strain is on a marriage and family. I know exactly what you mean when your kid has “stomach issues” and it’s all in the head. I know exactly what you mean about wanting someone to understand what all you learned that day or what it means or how you need to change things for the sake of that one child, etc. I know exactly what you mean when you say you feel like you are neglecting your other child. UGHHHHHHHHHH. Yes to all of it. We have our first appointment for diagnosis in April. We are hoping for sooner, but we will take April if that’s what we get. Keep posting this journey – it has been encouraging for me and many others, I’m sure. Here’s to making PANDAS/PANS a household knowledge and especially among doctors. My son’s pediatrician told me that it was just a phase and that I needed to keep his door shut at night to prove to him that he was fine. WORST ADVICE EVER. 🙁ReplyCancel

    • February 3, 2017 - 6:19 am

      lucy - I am so thankful you got him an appointment Amanda! That sounds exactly like what a pediatrician would say if they had no freaking clue! I had another PANDAS mom tell me today they were saying her daughter was just trying to manipulate her. Um, no…this is brain inflammation and it makes your kids a completely different human! If by sharing our complete messy life and journey is helping anyone than I feel like I am doing my job. xoReplyCancel

  • February 3, 2017 - 1:17 pm

    Shannon Routh - YESSSS!!!!!! Passion! Determination! you WILL make a difference and perhaps this disease and those dealing with a diagnosis or caring for someone with a diagnosis need a voice like yours. We can’t always make sense of why we are chosen to walk the paths we do…sometimes we see it hindsight and sometimes we may never know why. Praying for healing in Ellie. And praying God will show you a glimpse into why your family is walking this walk as you continue on this journey.ReplyCancel

  • February 3, 2017 - 1:22 pm

    Shannon Routh - Also….look up Med Gift. It is like a gift registry for people going through medical related things. Instead of registering for ‘gifts’, you are registering for different bills that people can sign on and donate money towards. Helps towards your daily needs.ReplyCancel

  • February 4, 2017 - 2:04 pm

    Kirsten Hall - You will make it through this…we all will….ReplyCancel

  • March 11, 2017 - 4:22 am

    Felicia armijo - Oh my dear i am struggling right there with you. I also have a daughter 9years old who has pandas. It is seruously a struggle everyday. It breaks my heart reading and researching about all these children and families going through the disasters that pandas causes. I have felt so hopeless but tonight finding your blog has brought such warmth to my heart. I pray the gods healing hands would just take this and cast it far away.ReplyCancel

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