Hi Friends, It's Olly Belle!

October 12, 2019

Hi friends, its Olly Belle!

I am not much for words these days, but I sure know how to dish out the smirks and smiles :) 

I am still in the hospital, but it feels more like a fancy hotel with robots in it (they like to beep at me sometimes). Last night was a tiny bit rough- I had a 102 temp all night and those sweet nurses and doctors were in every hour to check on me and make sure I was comfortable and ok. They give me medicine in my tushy now- its a bit strange but I really don’t like drinking the medicine, so it’s okay. The doctors did give me some pokes this morning, I passed those tests like unicorns flying in the clouds.

My startle reflex (aka surprised face and arms) also got bad last night. I promise I haven’t been watching any spooky movies for practice. Most noises last night surprised me and I would wake up and toss the blankets over the crib or on my face. My momma told the nurses that I was just really tired and needed sleep or this would keep happening. They listened and let me be for 5 hours so I could get some peaceful sleep. Man those swaddles are a dream- like a baby burrito with side of guac. 

My speech therapist came in again this morning (to help me focus on swallowing and bottle feeding). She told my mommy and daddy that I should only drink water in my bottle from now on so that I don’t accidentally choke and get pneumonia. I also now have to lay on my side to drink from bottles so I don’t accidentally choke. It’s sort of nice because now I can control the fluids I want to swallow instead of choking or gagging on the ones I don’t want to swallow. I get to do something called a swallow study on Monday to help the doctors learn how good or not so good my swallowing skills are getting. 

After that visit from my speech therapist this morning, I was hungry! I enjoyed three containers of purée- bananas, sweet potatoes, and squash. Man did that taste good and make me happy!  I also got a sponge bath too- I prefer my baths at home, but it's nice not to be wearing my leftovers on my pjs anymore.

On my to-do list today at the hospital: 

1. Nap! As much as I can. 

2. Eat! pureed food as much as I want 

3. Take another test- the doctors are going to remove me from the IV fluids for a little while and see how sweet my blood is (if I lose my sugar too fast, they will give me some more pokes for some more tests). 

4. Feeding tube!  Because I haven’t had the energy to eat good and all my leftovers inside me are gone, the doctors are going to help me catch up on calories by giving me a feeding tube. They said it will go through my nose this time, I’m a little nervous about that and mommy and daddy are too. But it's going to help me feel better and I might even take it home with me as a souvenir until my g-tube gets put in (more permanent feeding tube from my belly). 

I am going to stay in my cozy hotel room with robots for a little while longer, until the doctors can get my swallow study done, my feeding tube in, I poop more regularly, and my fevers are more manageable. The doctor said maybe Monday or Tuesday I can go home. 

Can I ask you to do something for me? Can you pray to my friend Jesus? 

My mommy and daddy and big sister are trusting God and his perfect timing in all of this. Tay-Sachs is hard stuff and I am in training to become a Tay-Sachs warrior!! Can you pray that I do well on my tests today and Monday? Also can you pray over my big sister and mommy and daddy? They sure are troopers and could use some extra love, support, and peace. These robots are fun in my room - but they certainly aren’t as much fun as being home with my family and two puppy dogs, Cuddy and Beasley. 

Much love, 

Olly Belle Chapman