I really am waiting on the time I can write and say it has been an amazing week or an amazing day or something has improved! I feel negative posting updates sometimes but this journey surely isn’t always butterflies and rainbows. While currently we are in the valley, I know before long we will be on the peak, so it is just quite the roller coaster but it is all about keeping the faith and putting one foot in front of the other.
This past week was really tough.
Nothing has changed with Ellie’s medicine or symptoms. I finally got in touch with Dr. L’s office this weekend to tell them the medication is not working or making any changes. I really wish she wasn’t flaring right now but it seems every little thing sets her off and here we are walking on eggshells. As things have progressively gotten worse we realize she can’t function to do her school work. Her behavior is fine at school but academically she isn’t. When I talk to the doctors or other PANDAS parents they say, “don’t worry about school, right now it doesn’t matter.” It is just so different for us to think that way. Ellie has always taken a lot of pride in her school work and been an exceptional student and now we just aren’t supposed to care (right now). That is hard. As parents it is hard to know what the right decision is and what we should do but we aren’t left with many options. I heard a good analogy….I wouldn’t expect my child to run fast with a broken foot….it is the same thing right now. I can’t expect Ellie to function like normal with a “broken” brain or a brain that is swollen.
So, Steven and I made the tough decision to pull Ellie out of school for the remainder of the year on a medical leave of absence :(. After treatment she will be home schooled by a teacher friend who is stepping in to help. Because of the way Ellie takes her aggression out on me, it just isn’t healthy for me to home school her. The school the girls attend is very fast paced and even missing one day makes it difficult to catch up. She was falling further and further behind and we didn’t want her to flunk out. That would do nothing but damage her confidence even more. When we sat Ellie down to chat about school and the options at hand, she was bawling. I felt so bad and my heart hurt for her. What a hard place to be in at 9 years old. She is going to miss the social aspects of school, she loves her friends but it was almost a sigh of relief because she is aware she can’t keep up right now. She was in between a lot of emotions so we just held her and let her talk about how she was feeling. So, that was the biggest/toughest decision that was made this week in this journey.
I also went for my consultation to have my tonsils taken out. I was feeling very hopeful about the consult. This isn’t the first time I was told I need my tonsils out but I was more serious about having them removed so I wasn’t a strep carrier for my daughter. The particular ENT doctor we were referred to, we were told knew a lot about PANDAS and was totally on the same page. Well, when I met him, he was the biggest jerk ever. He basically rolled his eyes in my face over Ellie’s PANDAS diagnosis and me being a carrier as the reason I needed my tonsils out. He was harsh and rude and it took every ounce of whatever I have left in me not to just want to lash out. At the end of the consult, he said “so do you want to go ahead and schedule your surgery?” I said, “I would no more let you perform my surgery than I would my child!” I am pretty sure I had fire coming out from my ears, I was furious. I have heard from multiple parents that there are doctors that don’t know enough about PANDAS and so they almost roll their eyes at it….well I experienced that. I was so frustrated because I drove almost an hour to get to his office and having Ellie in the car is down right miserable. I had to pay out of pocket to see him which I felt was a total waste of money. It was the combination of all those emotions of utter frustration that made me burst into tears in the parking lot.
I also got my first hate mail on my blog about our PANDAS journey. I will share more about that another time.
On some positive notes, we have sold so many shirts it has blown my mind. I have had people wearing them and tagging me in their pictures! It is so exciting to see everyone on Ellie’s team and the amount of support we have in our corner. We added tank tops, bracelets and stickers to the mix and are excited to start shipping those out this week too. I have a link to the donation page as well as the products available on the left side of my blog.
Montana, our sweet golden doodle puppy is the best therapy dog ever and puts a smile on our face no matter how bad of a day we are having. We took him to a big doodle playdate today and he was the happiest boy ever. It was 75 degrees here in NC today! That is crazy right?!?
I am quite nervous about having Ellie home everyday with me. I am just counting down the days until treatment and praying a lot. I pray the Lord heals my daughter and all these symptoms go away. I pray for other children that no one will ever have to experience this awful disease. I pray for the parents that are battling with this disease in their children. I pray for your strength and courage and healing over your children. Miracles happen and I fully believe that Ellie and these children can be healed with the power of prayer.
Here is our past week in pictures.