06/28/2022
Beau Update:
Well… we are NIH bound this morning until this Friday. Beau in good spirits despite of knowing he is going to have a hospital stay this week.
He had a wonderful weekend with his best buddy Carter at the Kids Catch All Tournament with his amazing dad Captain Nick Sampson that was a wonderful distraction to what this week will hold.
The NIH has been wonderful to work with so far. This has been unlike anything we have experienced in the medical community thus far. They have been very attentive and made Beau and how HE medically presents their primary concerns and not forcing text book definitions and opinions on us. At the NIH, they know that when someone is coming to them, they do not fit the molds that people are shoved into. Beau will be having almost 6 months worth of testing and consults in a matter of 3.5 days.
This momma is very nervous, definitely some PTSD, from past experiences and praying that I can keep my walls down, as I know that they truly want to help Beau and our family learn more about him and how we can support him.
I truly believe, God has made me a nurse just for my children and family. If I can share anything with you to take away from our experience, ADVOCATE. If you feel for a moment that something is off… don’t stop until you get answers.
It has taken us almost 11 years to get this close to answers for our Bubba. I am sure there are a few items we could have been able to prevent or possibly different outcomes if they would have just listened to me earlier on… but, God has a plan and EVERYTHING happens for a reason.
We can not change the past, but I for sure will ALWAYS follow my momma’s gut and the knowledge that God has given me from my professional training, as well. According to my son’s medical records, I am a bit of monster of a mother and resistant to medical advice. I’ll suppose I will take it if it means that we got what Beau what needed at the end of the day.
I am very hopeful that this AMAZING, INCREDIBLE, RARE boy has a productive week at the NIH and that we are a few steps closer to understanding him medically speaking.
I am sure this is why God has made me a nurse, not to mention our Harley girl has also given us a run for our money at times medically speaking too. Lol 😂 I think she was the intro to what we were in store for with our buddy boy. LOL We could not ask for a better big sister to for our guy to love and support him.
Asking for prayers for patience, courage and peace for us all this week, especially for Beau, as he has been incredibly patient and brave for all of his almost 12 years on this earth.
Thanks and will update as the week progresses.