For Riley we need to make decisions that scare me sometimes. It's the same type of anxiety I had when trying to decide to send Logan to K but, different. I am not an MD. I was never in medical school. My hospital experience before Riley got sick was working with nurses to help cover them with insurance policies. So yeah not exactly a hands on medical background.
As time has progressed and we've started to add words to our vocabulary that I never knew existed we're learning that our decisions on behalf of Riley are as important as the input we receive from her doctors. Now we always go in to these situations with as much information as possible but, having the ability to use the words we've learned to work through scenarios with Riley's doctors makes us feel as if we are doing everything we can for Riley. We have to go with our gut though in most instances because again "we're only her parents".
Thursday we will be back at Neurology. This time in the Keto Clinic. We will turn in our zillion page questionnaire about what Riley eats (remember everything is via gtube so the paperwork has had me rolling my eyes) we'll meet with the nurses and dietitian and we're making a decision to put Riley on the Ketogenic Diet. It's what my gut is telling me that we need to do for Riley. It's also something her doctors agree to.
Unlike other families who have children on the Keto Diet we are lucky, if you can even say that, in the sense that Riley is 100% gtube fed so we won't need to adjust her diet or what she eats but, just change formulas again. Here's to hoping the keto formula is nicer on Riley's digestive system then the one we are on now!
We also hope to discuss taking Riley off the Sabril. We had our first appointment last week with the Ophthalmologist and although everything looks perfect in regards to the health of Riley's eyes, I don't believe Sabril is doing what we were hoping and I don't want this to be a med that is given on top of other meds if it is not helping. Remember a lot of children end up on a handful of seizure meds because the doctors just keep trying and adding and don't take away. So we'll see where that discussion ends up. I have a feeling though that they won't want to go this route. Perhaps it's the pessimist in me.
The good, although frustrating news is as I mentioned everything looks great in regards to the health of Riley's eyes. It's her brain that struggles to help her see. (which we've known since day 1) I was skeptical when we first arrived at this particular doctors office about what his demeanor would be in regards to Riley. His encouraging words as we left about the health of her eyes and his use of the term we've come to know well "plasticity" of the brain reassured me that we are doing all that we can to help Riley. She has all the "equipment" so to speak it's just a matter of continually working with her and for her to see what she will be able to do. We'll see this doctor again for another exam in September.
Riley has been doing well given all that is going on. She is amazingly strong and brave. We had to take her to the pediatrician last week for a couple of shots and she took them like a champ. At first I think she was having ACTH injection flashbacks but, she didn't even cry. Just held my hand and whimpered a bit. Logan can hardly believe that his sissy was so brave. He could use some of her strength for his shots! We were able to have lunch at my parents house after which made for a nice afternoon.
Summer is definitely here. We had a wonderful time this weekend swimming a ton and Logan loved having Tobin and Uncle Scott over to swim on Saturday.
Just today I met a grandmother whose daughter had spoken to my mom at the park before. She noticed Riley's suction bag (it's hard to miss if you know what it is) and we struck up a lengthy conversation about her grandson who got "sick" at 9 1/2 months old and has "S" words and also has a gtube and trach. It's funny and may sound silly but, the decision to go to the park was pretty last minute but, was what I needed. Meeting this grandmother and hearing her story and the struggles her daughter goes through (as a single mother) with a child very similar to Riley (although he is 7) was the kick in the booty I needed to see that although some days are rough, others have it much harder and do this without the kind of amazing circle we have surrounding us. I've learned that you just never know when these moments will be placed in your life and can't stop thinking about it. I also hope to meet this mom/son one day as I am pretty sure we'd have a ton to chat about!
Because of our amazing support system, the kids were able to spend some time with Grandpa and Grandma Hopper yesterday while I attended a funeral and I think I can speak for everyone that they had a nice time together. Spending time with the Grandparents while mom and dad are not around really is good for everyone!
We hope your summer is going well! Hard to believe the 4th is just next week. We're living in the moment and taking advantage of time together before school starts again! In between the craziness that is naturally our life, Riley is working hard at her therapies and should start ST again in a couple weeks. She's also continuing to prove to us that hope, faith and love really can get you through!
Fight On! and Go Team USA!
Love,
Dave, Megan, Logan, Mason and Courageous Riley
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