Monday, June 24, 2024

Rheumatologist Update and other updates

 We had our follow up appointment with the Rheumatologist today.  He had no significant findings that require treatment.  The thought on her joints is that it came on with the Crohn's.  It shouldn't get worse, and it is not likely to be reversed.  (possibly with OT and paraffin therapy with stretching but maybe not) 

He does suspect she might have an additional underlying immune disorder called CVID, common variable immunodeficiency.  It lines up with a lot of her history and there are treatments available, but that will have to wait until September to see them for that.  

I had to go re read my last blog post because so much has happened in just a few short weeks.  She had her appointment with the Urologist and they have ordered a urodynamic study to check the pressures in her bladder.  I'll spare you the details of the procedure, but I will tell you it won't be a pleasant event.  

My second oldest daughter gave birth to our 7th grandchild, a little girl...emergently.  She weighed in at a whopping 1pound 5 oz.  She was life flighted to Riley and on day 3 of birth and remains there in stable condition.  She is a miracle.  Her name is Sunny.  Pray for them all.  Pray for all of us.  This is hard.  

To add to the "excitement" of our lives, our water heater went out Friday night and that is not a cost we were expecting to incur.  

I'm struggling in this season.  I can see an obvious decline in Lillian's health and stamina.  It can be discouraging.  She has been struggling with some type of cold that has required around the clock treatments and she's just starting to come out of that.  

I spent days and many messages and phone calls to get Lillian a new travel nebulizer (which apparently isn't covered by insurance) Her liquid stomach med they want her on isn't covered by insurance.  The professionals who are supposed to help with these things basically throw it back to me when they don't want to make more than one phone call.  I could go on and on and that is just TWO of the issues I've dealt with recently on her behalf. 

 We did have a very dear friend donate the rest of the money for her attorney in regards to her guardianship.  I'm so grateful. I keep telling myself things are going to improve.  If we can just get through some of the next obstacles. 

Transparency: I am not ok.  My heart is heavy.  

When I am weak, He is strong.

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