It’s been some time since I gave an actual update. We’ve been really enjoying our time out of the hospital. Writing about every detail of Lennyns life had become tiring.
We’ve been enjoying the little things. Words like “CP”, “brain bleeds”, “brain surgery”, “Shunts” and “delays” have hardly been mentioned while we have taken a vacation from dwelling and what if’s and have just focused on our family, all home, under one roof, enjoying being alive. Living. Breathing. No sounds from monitors. No smell of alcohol and sterilizer.
We now have a weekly routine and things have been good. As other parents of Hydrowarriors know, you’re almost are afraid to let your guard down because we can be right back in the hospital with the snap of a finger. That’s why it’s been so important to just focus on the now and on each other. Those 4 months were hell. Living hell.
Lennyn does therapy 4 days a week. We have in home once a week, PT two times a week, feeding therapy once a week and OT once a week. She still treats regularly with her Neurologist, Neurosurgeon, GI, and Pediatrician. She’s a busy girl. There’s no way I would of ever been able to go back to work full time with her schedule.
Lennyn has low tone. According to her therapist there is a low tone Cerebral palsy . A lot of kids get the diagnosis to help them with services. This is highly likely to be our future. Although, she thinks Lennyn will walk at some point, wether with an apparatus or by herself, it’ll happen- on her time. Another blessing.
Lennyn had some misfiring episodes last week so her Keppra needed to be upped to avoid a break through seizure. We were hoping she’d eventually come off of it but if she needs it, she needs it. She has a 24 hour eeg next week. Wish us luck. Should be a blast. I’m sure she’s going to LOVE it. It’ll be our first time back to St. Joe’s since January. Can’t say we missed it. Glad this is a much lighter stay but being there will bring back some not so light memories.
We have a follow up swallow study in two weeks. Hoping we can slowly ween back on thickeners and she’ll be able to drink liquids with more ease as she grows. She’s currently eating stage two foods like a champ. We’re working hand and hand with her feeding therapist and will slowly start introducing her to more solid foods. Slow and steady wins the race. We’re in no rush here. We want her to excel so she has to be ready. We also see her GI tomorrow and are hoping to ween her off of her MSPI formula and get her ready for a normal formula and eventually milk. All this is dependent on her allergy though. Fingers crossed she’s out growing it.
Lennyns second Helmet is now too small. Follow up next Friday to see where to go from here. The majority of her head had started to round out nicely, with the exception of one small area at the top of her skull. She’s growing like a WEED so praying this is corrects more seeing she spends the majority of her time sitting up and her head is no longer laying on a flat service. Upper body strength is getting better by the day.
We see neurosurgery in July and will soon after do a thorough scan on her brain to see just how much damaged tissue we have from her bleed. PVL spreads over time so we have prayed SO HARD that it’s minimal.
We’re truly blessed that’s she’s progressed as much as she has. Constantly reminding myself that although she struggles with some things, it could be a million times worse. She’s truly a miracle baby and she has truly made us better human beings.
Thank you for everyone who reaches out to ask about her and constantly prays for her and for our family. Those prayers have moved mountains in our house hold. ❤️🙏🏻