1 Year + 176
1 year +176
This week was low on official appointments and high on emails and correspondence. Tate always has PT and OT that come to the house several times a week. We didn’t make it to appointments on Wednesday as Tate was just feeling too sick. Her wheelchair was fitted for a power assist wheel! We’re excited for this! It’ll give her more independence when using the wheelchair and make Costco shopping easier(for example)when she’s too tired to wheel herself! (Pushing a wheelchair and pulling a cart is reminiscent of my 4 babies shopping days!)
We had a Round up River Ranch reunion at Meow Wolf in Denver. Wow! It’s a lot! (But really visually interesting!) Tate lasted about an hour and then spent some time reuniting with the staff she loves so much. Such an amazing organization! We’re trying to say Yes to all the opportunities presented. It isn’t easy on Tate, but important to get her out around other people outside of the hospital and our house. We’re so grateful for the opportunities!
Tate is not feeling well at all. Her body was flirting with a fever yesterday. She has some new ulcers which we’re pretty crushed to find. We’re praying it doesn’t mean the Behcets is back but also trying to process the reality of it all. Her rheumatologist is deciding on another immunosuppressant to add. As pain is continuing to worsen, education and planning will start next week for the implantable pain pump. I’m so grateful for home access to iv fluids, ability to put meds and formula through feeding tubes and an arsenal of meds to combat most things. It’s the reason I was able to keep Tate out of the hospital yesterday. A fever though is a different ballgame, so we’re praying she doesn’t spike.
Tates rheumatologist is in contact with a Canadian Dr. of a sweet mama friend of mine who found us through this page! Little Ronnie is developing symptoms similar to Tate and is only 4 years old. They’re finally getting somewhere with a care conference on Friday. I’m so grateful her Dr. reached out to Tate’s and am confident it will save them years of untreated misery.
Keep Ronnie, her mama Missy, hubby and little brother in your prayers as they enter this uphill climb. And especially pray for the medical team on Friday to have open ears and hearts and come to a clear understanding of the best way to move forward for Ronnie. And most of all for a positive physical response from whatever they decide. Love and hugs to you Missy!