And now back to our weekly update!
I knew this was coming. And I knew I'd be sad but, I didn't think it would hit me so soon! It all started Sunday when we took the boys to the local pumpkin patch. It was crowded and hot and stinky (smashed pumpkins in a field with 85+ degrees temps stinky). We got our 3 pumpkins, the boys picked one out for Riley, and my desire to hang out longer just wasn't there. Neither was Dave's. I was sad that Riley couldn't come (we need to avoid crowds of people) and I know Dave was silently cursing me because I got the dates of the pumpkin festival wrong and we both thought we were going to an uncrowded open field, not the popular Cal Poly Pumpkin festival! We powered through though because we had promised Logan and Mason that Sunday was the day to go to the pumpkin patch and there was no turning back. And it was fun. And then while at home listening to the news I heard that the "Love Ride" was Sunday. That meant that 1 year ago Sunday we did this......
And so now begins life after illness, or holidays being celebrated a "new" way. Most of the memories that really stick with me from the 1st year of the babies' lives are those from the last holiday season. The babies were starting to "do" more and interact more with us and really settle in to their roles in our family.
I just want our normal life back sometimes (all the time).... and now more then ever! The memories I have imagined since finding out I was pregnant with the twins.... the holidays.... the growing up together.... Trick or Treating.... Turkey days.... Santa and Christmas. And yes, we will all be together, which makes my heart so happy but, it won't be the same. We need to be careful who Riley is around. We need to limit her activities especially now. Will we even get to make a trip to see Santa together??? I mean I've giggled at the thought of me spraying Santa down with Lysol before my kid's could sit on his lap. Trust me it's on my list of possible ways to get Riley to the mall! And that makes me incredibly sad. It makes me miss our old life.
However, in between these moments of sadness and self pity (and really they are just moments. there just isn't time to dwell on things too long...which is good) we are thrilled that Riley's body is still reacting well to the ACTH. She is super agitated at night. To the point that we've been using her extra Valium dose more nights then not. We've tried everything and nothing is making her happy!!! And on the flip side, with the extra Valium dose, Riley is very sleepy the next day. Really can't win in this situation and it becomes a balance of what will help her relax and what do we need to hold off on so she can participant in therapies etc. Not sure if we're managing it as I had hoped but, we're doing everything we can to make sure Riley is comfortable.
Last night however she was calm and so we let her rest and didn't disturb her to get in our nightly snuggles. We really are living in the moment and taking things one day at a time.
We had our appointment with the Aero Digestive Clinic yesterday. It's a once a month "clinic" in the ENT's office where an ENT doctor, GI doctor and Pulmonologist are all in one place at one time. Theoretically, it makes sense but, waiting around to see all 3 doctors and having Riley poked and prodded 3 different times was a bit stressful and time consuming.
We left the appointment with plans for a bronchoscopy, endoscopy and PH probe. The scheduling will be a bit interesting but, we're hoping to pair these tests up with Riley's inpatient continuous monitoring that will start on 11/13. The continuous monitoring will be the 24-48 hour EEG that will show us if the ACTH is truly working.
The one good thing that came from the appointment was us getting to meet a new ENT. Our normal ENT was also in the office yesterday and after a chat with him about certain things we're doing for Riley I feel we're not on the same page.... at all. In fact, I was pretty taken aback and upset over his dismissive comments. But, the other ENT that we met happens to be a gentleman that had a g-tube and a trach when he was a baby. In fact he had both since birth and they were removed at 4 and 8 years old respectively. Remember that feeling of hope. He reminded me that I needed to keep moving forward for Riley. And it couldn't have come at a better time.
When I asked him if that is why he decided to become an ENT he said "yes, to help children just like Riley". We clicked, he agreed with my plans for different surgeries and procedures and I could feel how much he cared about his patients in just our 15-20 minutes together.
My job as Riley's mom and advocate is to put people on her "team" that believe in her as much as we do (or can at least act like it). I CAN NOT have someone discount our feelings or beliefs when it comes to Riley's care. Or when it comes to decisions we are making. Number one we are Riley's parents and there are some decisions that are made by us solely. I don't stand around the OR barking orders while you're in surgery so please don't try and do my job.
Will everyone agree with me 100% of the time? No. Will I agree 100% of the time? No. But, to dismiss Riley's progress and potential will not at any time be tolerated by any professional dealing with Riley. Period. Especially, when all you know about Riley's case is what you saw in January. Months ago....
So although I left the office near tears I am happy that we were able to meet a doctor that will be a wonderful addition to Riley's care team. And now to break up with the other doctor. It's like I am plotting my middle school break up with the boyfriend I was barely going steady with. I'm sure this particular doctor won't care but, we will still be in his office every once and a while to see his associate so the chances of running in to him are high. Just a bit awkward!
Today we followed up with neurology. As soon as I uttered "seizure free for 48+ hours" I knew I was in trouble. The appointment went well and we'll have a quick EEG next week to make sure all is well. Riley's doses of ACTH will start being titrated on Thursday. I asked the doctor for another clarification of what the medicine was doing and he drew me a picture. :)
I really like this neurologist so it was nice he could explain it all to me again! As soon as we got home Riley had a startle seizure that was +5 minutes. She was aggravated and hungry but, it still was unsettling. I know this treatment is working so these momentary setbacks are frustrating.
Tomorrow we meet the CI surgeon from USC and Friday Riley gets her second round of botox. As long as Riley tolerates it we aren't slowing down. Therapies are back up and running and we'll settle back in to this routine until the next planned hospital visit in November.
Thanks for hanging in there with us! Through the ups and downs, the vents and the celebrations. As anyone who has ever had a child with a special need (whether it be an illness or long term diagnosis) knows, the one thing you have in your court is being the parent and knowing your child the best. I know I am rather blunt and open about our daily lives but, it took me a few months to really figure out how important it was for me to question and ask questions when it comes to Riley's care. Often times I feel like we are taught to grin and nod (especially when it comes to our medical care) and that is not what cooperative medicine to me is all about. And trust me, there are so many people involved in Riley's care that without cooperation nothing would get accomplished!
And because I just love these videos I have seen recently floating around YouTube I will share Katy Perry's Roar done at CHAD. If you've never spent any time at a Children's Hospital this will touch you and if you have it might make you cry. These places are where miracles happen. Everyday. Fight On!
Dave, Megan, Logan, Mason and Courageous Riley