The positives are that Riley is:
*Tolerating the new formula
*Getting readings of higher ketones in her urine
*Not having any glucose issues
*Appearing to "thin out" some (although this could also be because she is growing)
The not so positives are that Riley is:
*Still having a few (1-3) spasms a day. Like I said when we first started the Sabril they seem to be less in length and severity. Sounds too familiar to me.
*Seems to be more sleepy. This is often something that Riley experiences with any new med change.
*Managing her meds has proven to be frustrating with the changes that have been made! Thankfully, as of this moment I think we're good going forward!
I've tried to not focus on the what ifs. Tried to put my thoughts about what we would do if x,y,z happens out of my mind but, as the days go on I am finding myself thinking more and more about what if this doesn't work.
So we're continuing to watch and monitor Riley and wait for our appointment with neurology next week on the 14th. I have a feeling that this will be one of the harder appointments we've had to go to if things don't start to really click with the Keto Diet over the next few days.
Last week Hannah, our amazing nanny/babysitter was on vacation so I tried to do fun things with the boys each day. Chuck E Cheese, lunch out together etc. And, the boys were able to spend some extra time with Grammie and Pa Doug. First by spending the night in Arcadia (Mason' first time away from home!) on Tuesday and then going to Del Mar with Grammie and Pa Doug Saturday through Monday. The boys were able to go to the beach, visit with Uncle Brad, Aunt Kara, Molly and Luke, play at the park, make OJ with my parent's wonderful neighbors and Logan even took a ride in the Corvette! It was nice to have the house quiet for the weekend and we got some more one on one time with Riley. I know they loved being spoiled by Grammie and Pa Doug!
We had our first ST appointment last week and it went really well! I really like Riley's new therapist and think she'll be great for Riley. Yesterday, we had our second ST session and I had to bring the boys so we headed over to the cafeteria to get treats. It was probably for the best as the boys couldn't keep their hands off of Riley's therapy toys when we returned! Riley was already doing more then she did the first visit so we're encouraged and hopeful that this will be a positive for Riley in terms of learning to communicate "Riley's way" and eventually starting to work on swallowing because....
I have to preface what I am about to say with telling you all that we were fairly certain that Riley would fail this swallow study. May sound mean but, to be fair to Riley she has not taken anything by mouth in over 18 months. When she first "got sick" she was eating purees and taking bottles. I tend to try and educate myself on what to expect before a "new" test so I had done some poking around on the Internet and read through postings on a Facebook page I've joined for mom's with trach babies and knew that a "fail" was not uncommon. It still stings though.
The ST that helped to administer the test was nice but, unfamiliar with Riley as a whole so I took everything she had to say with that in mind. If you think you know Riley on paper I can guarantee you don't know Riley.
I can't really explain what was off about my interaction with her but, when asking for guidelines specific to what Riley's swallow study revealed, so that we could go back to our ST with a plan, she seemed a bit shocked. I don't know about you but, it just seems logical to me that Riley's ST should know specifically what to work on with her. For instance Riley did not do well with the barium liquid when presented and aspirated very quickly. She did better with the mashed avocado but, still had a delayed choke response. These study specific things will give us a better idea of what Riley needs to work on.
She also left me with that pit in my stomach when we interact with someone in the medical field for a brief period of time and I can see the doubt in their minds. The awkward dance they do around what words they are going to choose to use to explain to me what is going on with Riley. The truth, the facts. It's what we want and need. It's how we can best help Riley. Sugar coating or trying to make me feel better about Riley's situation, while gingerly trying to "explain" Riley, comes off like I am stupid. I'm not. We're not. So I left feeling rather defeated from our whole experience which hasn't happened in a long time.
So we continue to wait and pray and hope that we see some positive changes as far as Riley's seizures over the weekend. Even with everything going on Riley is still amazing us (like she always does). She was awake all through PT today and did some cool new moves.
Wednesday afternoon she showed off her skills with her passy muir valve (a valve placed over the trach so Riley can make sounds) and had my mom, Dave and me in tears. Her coos were like a 4-5 month old that has just discovered their voice. I posted a longer video on FB but, figured I'd post the shorter video here.
The boys are in the background and the 45 seconds I recorded pretty much sum up what life is like in the Hopper Household!
Riley making sounds!
We hope you all have a fantastic weekend and as always Fight On!
Love,
Dave, Megan, Logan, Mason and Courageous Riley
Thanks for the overall positive update. You are a wonderful momma, Megan Hopper. Love, Cindy
ReplyDelete