Update

Thank you thank you thank you for sending an enormous amount of love Lenn’s way. I’m trying to respond to everyone as fast as possible.

She has been through A LOT and is pretty traumatized from flying on a helicopter with a bunch of strangers, being poked a million times because she’s the hardest stick, to being basically straight jacketed down on an MRI table because she fought her way through sedation, to not being well. But, She is a beast. She is a fighter. I am in absolute awe of her.

Lennyn was stabilized at Joes and THANK GOD her shunt is functioning properly and her labs look good, minus a little dehydration from the amount of throwing she did. This was most likely a return of her seizures. As you all know, she was on seizure meds up until not very long ago. Seizures suck y’all. Completely sucked the life out of our lively, sassy, energetic girl. They are scary enough to throw off her vitals and we need to get them under control.

Her saturation’s were up once given seizure meds and she was able to hold down some liquids. To protect her from any more exposure to Covid, Joe’s is giving us the option to bring her to her Neurologist’s, just up the road, for her EEG, outpatient today. Because of the amount of covid floating around the hospital we agreed that it would be best to get her out of that setting if stable.

I can’t thank ya’ll enough for reaching out and praying and letting us know that every curve ball her little brain throws at us, we still have a massive team behind us. Thinking about the support system we have brings me to tears because the LennynStrong crew literally keeps us strong for Lenn when we’re feeling really weak and scared. Huge believer in prayer and good energy and Lennyns progress and abilities show the power of it all. We left the house yesterday really thinking we would be headed to brain surgery number 5, as she was showing ALL the symptoms.

Everything she has been through up until this point has been awful. Being out of the hospital for a year, we had totally let our guard down to what life with Lennyns conditions is like. I’m so grateful for our hospital free streaks because the older Lennyn is the more heartbreaking and scary episodes like this are.

I also want to add to please keep special needs and other sick kids that are in the hospital right now in your prayers. Having your child scream for their Dad when their Dad isn’t allowed in the hospital because of Covid is heartbreaking. I can’t even imagine being the parent of a child who is hospitalized long term right now. Doing it all by yourself without you partner, especially with a a sick toddler. I’m crying just thinking about it. Counting our blessings that this time, it wasn’t Lennyn staying long.

So taking a little snooze with Lenn as all these drugs wear off and headed out to neurology. I will update everyone as I get more info. #lennynstrong