I’ve been far from stellar at keeping everyone aside from our immediate family abreast of life with Lennyn. I’m exhausted. We all are. So bare with me as I give you the run down since my last update.
We were discharged from the hospital on Friday evening. Results are as follows:
EEG- Episodes of misfiring, keppra upped to 1/2 ML two times a day. Appointment in 2 weeks.
Echo- clear – follow up with our cardiologist in 8 weeks
Telemetry – mostly clear, some episodes of borderline high respiratory rate
MRI- Ventricles still small in size, some debris from the bleeds (this could affect the ETV portion of her surgery but so far so good). Repeat MRI in 4 weeks. 🙌🏻 One month down- 11 months til we should be in the shunt clear 🤞🏻💪🏻
CT- Plates in her skull are not prematurely fused and will shift back into place over time/helmet
Swallow study- failed- Repeat in 2 months. Aspirations (fluid from feeds enters airway instead of being swallowed correctly) and Reflux. Thickened formula with rice, side lying feeds (hold her like a foot ball) and pace her (counts of 5 and then pull the nipple to the side of her mouth so she remembers to stop eating and breathe). Our AMAZING nurse Jessica got us worked in to a GI who has a one month wait, on Wednesday, to see what we will to about the reflux. Another specialist to the list. We’re so fortunate to have her advocating for Lennyn.
Dietician came in and said we are doing great with our feeding schedule. Need to stick to 90 mls every 3 hours and we can set an alarm for 5 hours at night and if she doesn’t wake up on her own before then we can wait 5 hours to feed (SLEEP!!) We will gradually increase the volume as she grows. She is in the 85 percentile for her corrected age (3 weeks old). She’s only in the 5 percentile for her date of birth though.
When we were at our Pediatrician office getting our vaccinations, the day we were rushed to Tampa, Lennyn choked on the Rotovirus vac. Thank you to the quick actions of her nurse (the same Jessica we adore), we were able to get the airway clear. The hospital staff is under the impression that she aspirated and her o2 drop and heart rate spike a few hours later was the result of the medication being in her lungs. Our discharge papers also are calling it a BRUE. Brief, Resolved, Unexplained, Event. Didn’t feel brief when she was desating for two days 😒
I think that’s everything related to our 4 day Tampa vacation …
So our treating doctors stand with a Pediatrician, Neurologist, Neurosurgeon, PT, OT, SLP, GI, Cardiologist, and Ophthalmologist.
The remainder of the week we have our OT, Feeding Therapy, GI, Synagis, and helmet fitting. Next week is OT, PT, Pediatrician, Neurologist, and Feeding Therapy.
In other news, I ordered two canvases from Canvas on the Cheap. I’m going to start doing a must have Monday and that’s the must have for this week. I ordered 2 16x20s and with the promo they’re running. It came to $41.16 out the door. They are huge and GORGEOUS. Great gift idea, AND the shipping was fast. Under a week.
New Lennyn achievements are the start of intentional smiles. Little chunk cheeks is full of smirks towards Mom, Dad, Sissy, Nini, and her favorite toys. Look at this HAM!!
Pretty incredible to see and not too far off track, for someone who has white matter loss and some scar tissue in her brain from a bilateral brain bleed. If that isn’t the definition on resilient, I don’t know what is. Screw our odds for CP and motor functionality, this baby will continue on this rate and excel in every milestone.
With that being said, our family has tried to catch ourself every time we bitch about the little things that do not matter. If this girl is smiling at her Butty the Butterfly toy after an over 2 month stay in the hospital, 2 blood transfusions, sepsis, multiple pokes from needles, and two brain surgeries, we are pretty damn selfish to complain about anything. Reminding ourself of this daily. Were you also #LennynStrong today? Until next time, friends 💜