• Paris Bean

Day in the life with Brenden

On weeks like this week there is a lot to take in, averaging a doctor or two a day can be overwhelming. Last week we had to stay in St.Pete @ Ronald McDonald Home for two nights because Brenden had four appointments in on day and a fifth appointment the following morning @6:45AM. Luckily only one of our appointments this week is in St.Pete. In-between all of his dr appointments we make sure that we work with him as well, reading books, singing songs, infant massage, tummy time, toy stimulation & nature walks! He loves the community garden.

Monday we saw his OT we actually love those appointments, anything positive we are a fan of! We get to play on a tummy time mat and show him different toys, stimulating his brain in different ways. He shows us his strengths and his weaknesses, this week for the first time he reached out and grabbed a toy. His OT and I shared the same level of excitement, I love how hands on she is. She held him for a while making noises and sticking her tongue out at Brenden. He worked very hard at this appointment leaving him exhausted and ready for his late morning nap.

After every appointment that is at All Children’s Out Patient Care in Sarasota we always go to Salt Of The Earth spending just twenty minutes playing in pink Himalayan salt really does the trick- this place is AMAZING! It really helps his respiratory system and levels out his PH balance. Leaving feeling zen, refreshed and strong we are ready for the rest of the week.

Tuesdays We have our Speech Therapy appointment, no he is not talking yet! The speech muscles are directly connected to breathing, sucking, swallowing and your gag reflex. At this appointment they evaluate Brenden on a weekly basis. He has found his tongue and fingers this week! Learning to self soothing and strengthening his sucking muscles, although we are hoping he will learn to swallow next there is no guarantee. Brenden still has a delayed gag reflex so feeding him orally is still very dangerous. We bring our suction device to every appointment Incase anything happens. During this appointment we carefully put a few drops of breast milk on his fingers while we gently suggested for him to taste his hand.

Wednesday was a blessed day! We got to actually sleep in and relax, days like this are rare. No agenda is the best feeling in the world. Nothing feels healthier then uninterrupted cuddles! I even got to meal prep, do laundry and clean the kitchen! Getting all this done in one day is unheard of around here. Normally we are always packed up and on the go, coming home drained and exhausted with no energy to tidy up or do simple chores around the house.

Thursday’s are normally our pediatrician days, we have to go weekly to keep an eye on his weight and to measure his head. The neurologist in the NICU had requested both those things to be done weekly on our discharge papers.

Fridays, Wether we go to mote, myakka, the garden or a long stroll we dedicate Friday’s to FUN! It’s important for Brenden to see the world outside the drs; feel the sun peak through the trees, watch the birds and feel the wind on his face! We love going to the park and doing yoga together. Sometimes we just need to feel “normal” what ever that is.

The weekend is daddy’s time to relax, snuggle and work on projects. Building our future as a family is very beautiful, we enjoy working on projects together. The weekend is our special time altogether, our favorite thing to do other then cuddles is going to Home Depot! Spending the morning braining out all of our goals and then making them happen.

At the end of everyday I unpack and repack his bags, we have this spot in the house called Brendens corner. This corner consists of everything we need to leave the house on any outing. This includes his food pump & backpack, extra feeding bags, clean water, formula, syringes, Gtube pads, suction device, pulse ox monitor (if we go overnight), then of course there is the diapers bag, extra clothes bag (due to him not swallowing we go through ALOT of clothes in one day), we also bring a carrier anywhere we go. We also need chargers for all his medical equipment, those are in another separate bag. I normally have a friend join me on appointment outings otherwise I look like a crazy bag lady, when I’m alone I wear him and will bring the stroller just to carry everything he needs with us. The carrier I use to wear him is AMAZING! It even has spots for all the things I would normally keep in a purse so I don’t need another bag. Leaving the house is a very long process but as long as I pack and organize all of his bags every night before bed we aren’t late to any appointments.