Chatty Addy
She may be making new sounds but the classic Adelaide side eye remains during this recent blow drying sesh.
This blog title is admittedly deceiving. Adelaide is not really babbling but she is communicating and it was too cute a title to let slip by. So, If January was a suspense/thriller then February is shaping up to be a mysterious love story of sorts - but with seizures. Let me explain: Adelaide remains off oxygen (hooray!) and all her blood tests are coming back normal (double hooray!). She continues to be alert with clear moments of wakefulness and sleep and is also becoming much more vocal. A nice reprieve after several months of near silence. Unfortunately, her seizures are getting worse (boooo) and we are continuing to try different med dosages to help her find relief but, hopefully, this time without nearly, accidentally, killing her. All of this is very exciting and also a little shocking as we are now living with an entirely different person than we were two weeks ago. It’s a bizarre twist when you have to re-get to know your three year old daughter. She is making so many new sounds and exhibiting such new behaviors and we have absolutely zero idea as to what most of them mean. Let the sleuthing commence!
Some of the new communication is pretty basic and reactionary - gumshoe level stuff - but even these simple responses mean so much to us. Miguel told me that he accidentally pinched Adelaides finger in the car seat buckle the other day and she cried in pain. It was simultaneously heartbreaking and thrilling to hear. Outside of seizures, Adelaide hasn’t responded to pain or cried in… I don’t know how long. Obviously, this isn’t something we want to hear from her on the regular but such a promising sign of communication all the same.
Telling us what’s what during PT
Then there are the more voluntary sounds as Adelaide seems to be realizing that she can try and tell us what she wants. Towards the end of PT this week she let out the most pitiful whine I have ever heard. While I flip-flopped between being a puddle on the ground and wanting to push Adelaide to the end of the session, our nurse swept in and decided that Miss A had had enough for one day. That we needed to honor her communication with us. Her communication with us. Oh my gosh, she’s communicating with us! Then a few nights ago, shortly after I put her to bed, she made a cry similar to a sound she makes following a seizure. I ran into the her room and checked her pulse oximeter to see if her heart rate was elevated which is a good post-seizure indicator. It was normal and Adelaide did not seem unusually upset or disoriented like she would be following a seizure. Just to be sure I sang her an extra song, held her hand and ran my fingers through her hair. I left her room and not 3 minutes later I hear the same yelp - once again no seizure in sight. Now, either her seizures are changing in their appearance, which is entirely possible, or this little lady just didn’t want to be alone, and like a typical three year-old was trying to play me the “one more song” before bedtime routine. She’s pegged me for a sucker, aaaaand she’s not wrong.
Cruising the hallways in her stroller seems to help some of the fussiness. Stuffed animals also clearly help.
Other moans, groans and actions are harder to decipher and would give even Dr. House a run for his money: Is she uncomfortable? Does she want to be held? Is she over-stimulated? Bored? Frustrated? Is she in pain? Is it gas? Are the meds making her hallucinate? The long and short of it is we have no freaking clue. I feel like a new mom trying to learn my baby all over agin - except she’s three and an actual medical mystery. Weeks like these I’m not sure where I would be without our home health nurse. We observe her, try different things, compare notes: ok, we think the shrill scream is out of frustration because she’s having trouble getting her thumb to go into her mouth but what are the leg kicks about?! And especially with her recent increased seizure activity I have to wonder if what we’re observing is a new presentation of a seizure. If only strapping her into an EEG wasn’t such a time consuming and expensive process. But even if it is a new seizure, would we do anything differently? We’re already adjusting meds trying to get the known seizures under control so does it really matter? Except to know if my child is suffering or not, of course. But can we do anything about it if she is? Is being more alert even a better thing if she is experiencing pain? Woah, sorry about that kids - didn’t realize we had wandered back on to the anxiety express. Deboarding now, watch your step.
Exciting? Obviously. Stressful? Yeah. Hopeful? Be careful now. Look, I’d be lying if I didn’t admit her communicating gives me dangerous hope for things to come. Currently, she only seems to be telling us when she is unhappy or something is wrong but perhaps this is a clue that we are getting closer to positive communication. Is it possible that we are hot on the trail of her elusive smile and laugh? Perhaps, but I can feel the clock working against us as her seizures increase in frequency and intensity. There is no way to know how long this will last and if I’ll be relearning her again in a few weeks or months. But hey, Miss A, just so you know we’re here and listening and SO excited to be deciphering your new signs. And also, whenever you want to respond to my tickles or raspberries you are more than welcome. Love you, baby girl.
