This week has been a pretty normal week for us. Everyone is back in school, and activities and we are just cruising through trying to keep our heads above water!
Medically the kids are stable. Unfortunately, I did not get the answers I had hoped for this week. First for the good news...a few weeks ago I had mentioned a test that came back that led to more questions. That was a brain MRI, and it came back showing areas of inflammation in my brain. My PCP was unsure if this could explain any or all of the symptoms, I have been having so asked that I follow up with Neurology. I did see the neurologist on Thursday, and he felt very confident that these spots were not the cause of any of my symptoms as they are very small. So, praise God for no brain involvement!!! Now for the not so good news. There was in issue with the camera study and after waiting for 2 months hoping and believing it would finally give me answers the results were inconclusive as the lens of the camera was covered from the time it was in my stomach and they could see nothing of the small or large intestine. My PCP was pretty upset with the GI when I saw her and has sent two referrals to different practices as she believes we need a fresh set of eyes and someone who is invested in helping find answers. My thyroid and hematology labs continue to be out of range so we made some adjustments to my thyroid medication, and we continue to hope we can find an explanation for my myriad of symptoms. I have spoken to Dr. K and at this point we are also considering that a medication early on in my treatment of RA may have sparked mitochondrial dysfunction as an explanation for what is going on. I am just accepting that this is my new norm and choosing joy and putting one foot in front of the other. If at some point, we find another answer with treatment options I will rejoice in that news!
Last Saturday the kids went to a movie and ice cream and then we attended a fair and had so much fun as a family!
 |
| Alex's Room at DBU |
 |
| Alex dressed up for his house meeting |
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.