Hello everyone! I hope everyone had a wonderful holiday season, we sure did! After much contemplation, I have decided that this will be the last post I will do here. The first 2 years of Oliver's life have been full of excitement, stress, and joy. We are finally at a point where Oliver's health is stable and our focus now is on his eating and making sure he is on track developmentally. Since Ollie was born, I have also kept a written journal to document all of Oliver's appointments/day to day progress so that one day if Oliver is interested, he can read about his life, the decisions his parents needed to make, and learn about himself! I plan on continuing to write in his journal for as long as I can. With that, here are the updates for November and December!



Audiology: Oliver had a follow up outpatient hearing screen at Boston Children's. The results came back similar to the sedated hearing test Ollie had in August which is good news because his hearing did not get worse! We also met with the otolaryngologist. They recommended that we get early intervention speech therapy due to his speech delay. This will also help us for when Oliver gets to school age in case any adaptations need to be made to help Ollie be successful. 

Infectious Disease: Follow up to discuss the hearing test results and whether or not Oliver needs to continue the Valganciclovir for his CMV. It was decided we no longer needed to continue this medication which was great news. Even though Ollie's hearing is the same, we have noticed that Oliver points out whenever he hears a sound, especially the ice machine at our house. I'm not sure if that's normal at this age to point these things out but it's nice to see he is paying attention to the noises around him!

Pediatrician: Follow up for weight trend since his is g-tube dependent. Short and sweet, nothing to report here!

GI: Nothing to report here. Tube feeding volumes to remain the same.

Feeding Therapy: Slow progress here. Oliver is not afraid to put food in his mouth and chew it, but he is still spitting it out. His therapist seems to think its more of an aversion in the back of his throat. We are all guessing it's due to having the replogal in his mouth for so long. We are trying different foods/drinks with different consistencies to break through this barrier. However this is going to take continued time and patience, especially since we have a 2 year old now! We are going to continue working on this and adding speech therapy at the same time since he has such a delay in using his voice. Ollie will have more frequent outpatient visits but we feel this is the right move for Ollie.

Occupational Therapy: Ollie continues to do great in this area. We have been working really hard on his development, especially fine motor skills and trunk control. Noah and I made the decision to discontinue the Early Intervention OT and transition to outpatient OT. This change will get Oliver out of the house to a different environment. The OT and his speech therapist will be in the same office so they will be able to work closely together and compliment each other. Again, this means more appointments, but for Ollie's benefits, at they're local. We will be keeping his Early Intervention on board distantly to help make sure we have all of our resources and will help set up an IEP if needed when Oliver becomes school-aged. 

NICU Follow-up program: Oliver GRADUATED!!! They program typically follows kiddos until they are around 2 years old. They were blown away with how far he has come medically and developmentally! They made the recommendations for the outpatient speech and OT which we had already discussed transitioning to, which helped with our decision. 

Dietary: Oliver unfortunately has made little to no progress on increasing caloric intake by mouth, at this point it's estimated approximately 100 calories today. They recommended we continue to offer high fat/high calorie foods to assist with weight gain. 



Happy Birthday Oliver!!!
I don't know where the time went but we have a two year old on our hands! He has made so much progress this past year. Most recently he has been working hard on putting on his clothes, getting close to starting potty training, and an expert helper to his mama when cleaning! He is interested in everything! The snow has been great for sledding which is one of his favorite activities. The 2 year old attitude is for sure here, trying to test us at every move. He is becoming his own person and it's so much fun watching him learn and grow! He is an awesome kid! I could gush on and on, but I'll stop here =]


Thank you everyone who has follow Oliver and our family on this amazing journey. We could not have done this without each and every one of you. There are really no words to describe how thankful we really are. I would like to end on an exciting note, Oliver is going to be a BIG BROTHER!! We are excited to see our family grow again, and to watch Oliver step into this new role this coming July. 

I hope everyone stays safe, healthy, and have a Happy 2022!!!