dr crews – Beaming with hope

So we have had a few people ask for updates from yesterday. It’s tough. It’s emotionally draining. I needed a day to think through it all, discuss it and then find a way to explain it. We left with another new diagnosis and no new treatment options. For the second time in 8 weeks weContinue reading

Tree drive drop off and Drs appointments

Another busy day. Addyson had two Drs appointments today and home hospital teaching. We also decided that today would be the tree drive drop off date and lunch with a friend! First appointment was with one of addysons autonomic dysfunction Drs. She agreed we are on the right path and have already tried all theContinue reading “Tree drive drop off and Drs appointments”

Pediatrician check up

Why does every one of addysons doctors say “she’s one that sticks with me and makes me think”? They all also say man, she’s still full of spunk even years later. Let her keep that sass it makes her the fighter that she is. Today we saw her pediatrican and we talked through everything. WeContinue reading “Pediatrician check up”

The weight is heavy today

The weight of Addyson’s illness is winning today. I’m struggling. She gets one of her meds from a dr in GA. (No issue there) Except that it expired yesterday, so the school can no longer give it to her and she can’t make it through a day without it. We found out that MD pharmaciesContinue reading “The weight is heavy today”

Motility & hearing update

Today Addyson had her follow up with her motility dr. This appointment always worries me. He can be stubborn. I believe him and believe he has Addysons best interest at heart but sometimes we just don’t see eye to eye. Today he listened. He agreed that if Kennedy Krieger’s feeding clinic had a recommendation thenContinue reading “Motility & hearing update”

Best dr = great phone call

Today I received a phone call from Addysons dr down in ga. He wanted to touch base to see how things are going. He always talks to me for a good hr reviewing all her symptoms in detail. He said that he can’t image the amount of stressors our family has had to face dueContinue reading “Best dr = great phone call”

Loving the new dr on our team

I cannot express how grateful we are for the new dr on Addysons team. He is amazing. He checks in on her all the time. He shuts down his clinic so he has time to see her without being rushed. He has the best bedside manner and truly cares about his patients and their families.Continue reading “Loving the new dr on our team”