With how fast our life is moving, sometimes I forget the impact Lennyn’s dramatic arrival has had on Ava.
Today I got a text on her way home from school:
It makes me so sad to have her so worried. The reality is though, this is our reality. We are all on edge. We are all worried. I don’t think that ever goes away. I think you just get used to the feeling. All we can do is remind each other that this is why we have the monitors. This is why we have so many doctors appointments each week. It’s to make sure she is OKAY. A quick cuddle session with Ava, Lennyn, and I and Ava’s anxiety was put at ease. She loves her baby sister and feels just as helpless as we all do. I’m so proud of how she is adapting to our new life. Seth and I remind her this daily.
Speaking of appointments, little lady is zonked out from our appointments today. I can’t help but to laugh at this onesie. She’s Seth’s mini- NOT mine. I just gave her room and board for 7 months.
Appointment with the GI went GREAT. WE LOVE HER. Shout out to Nurse Jessica for the hook up.
The Dr. said that our feeding therapist is the best in the area. Ironically, she was going to recommend us to her but there was no need because we already see her weekly ❤️. They will work hand in hand to try to get Lennyn to not inhale her food and to not reflux it either.
We opted to not jump to medication for her reflux. We will stay on a strict feeding plan and revaluate as time goes on. The reflux medication is taken FOUR TIMES A DAY and we struggle getting her Keppra and Poly-Vi-Sol in her every night.
Between three and five months old, reflux worsens in babies so this may get worse before it gets better. With her brain taking the toll it has, i was told to expect a bigger impact and slower grasp on proper eating. Come on Lennyn, let’s prove them wrong 🤞🏻
We will see this Gastro monthly moving forward. I told her that we are afraid to let anyone else feed her, her response was, “don’t let anyone else feed her”. I told her that my leave is up next week but I don’t think I’m going to be able to return to work because of the amount of care she needs. Her response was, “good, staying home with her is the best thing for her”. Now if money just grew on trees. Thank goodness for the fundraising efforts. It’s got us by this far! The truth is though, with the amount of care she requires, I NEED to be home with her. We will figure out the logistics of this and make it work. We have to.
Now that our doctor/Specialist count is up to 9, I had to get a binder to keep track of all of her stuff. Needless to say, it’s large and in charge.
Trying to make plans outside of doctors appointments is comical. While talking to my best friend, Laura last night- i think we fit a visit in for September of next year. Thank god for video chat and messenger. We have been therapy for each other relying on modern day technological advances. Talking to her regularly though, even not face to face, brings me comfort and brings me that “home” feeling. It’s funny how this situation has brought me closer/back to friends of years and realize which newer friends are the real deal. I’m grateful for this life lesson ❤️
Before I wrap up I want to give a quick thanks to my dear sister, and bestest best friend Olivia. Her days off are dedicated to sitting in the back seat and holding up Lennyn’s bobble head, running to appointments, and giving me a break on one diaper through the day. I’m so lucky to have you, Sis. You keep me, #Lennynstrong.