When it rains, it pours and we've had a bit of a downpour the last week or so. So I'm going with bullet points today.
-We are without a night nurse again for 3 nights per week. We are exhausted.
-We are in a now 10-day battle with Elle's insurance for her medicine that she has been getting for months. Apparently there was a glitch in the system and I don't even know but we have been on the phone every.single.day for hours with pharmacy and insurance and doctors and nurses and on and on. If anyone has ever had to work out something with insurance, you know it is a full-time job until it's resolved. We still are 'working' on this. We have enough for a couple of days at a time, fortunately, to get her through but oh my soul it's exhausting and like beating our heads against a brick wall.
-Elle's school told us they can no longer have her there. This is devastating to us (and we were completely surprised by this) and we are scrambling and fighting trying to figure out what we can do to get her into a school so she can have the social interaction she desperately needs with kids her age. We are looking into a couple of options that might work out so please pray that we can get this resolved and resolved quickly as she has already been without school for almost 2 weeks. We are exhausted. Again.
-Elle is not doing great lately. She's lost a lot of strength and control the last few weeks. Her seizures are longer at times. She is having trouble focusing her eyes. She's not swallowing as well. Her full body is contracting during her sleep sometimes - could be seizure activity but could be neuromuscular issues. She's having reflexes that babies have - which points to brain degradation. Her stamina has decreased. She is not sick, thankfully, and we have not seen any life-threatening problems necessarily (breathing, heart, etc) but we are still seeing a good bit of disease progression. This exhausts me as well as I am fighting with my anxiousness and worry that gets me nowhere. We see a lot that we have seen before with Milla, and that's hard.
*So I started this email yesterday morning...life got busy. :)
A couple of updates:
-We got her medicine!!! A whole month's worth!! Yay!!!
-We are moving forward with a couple of school options...baby steps but still very encouraging news.
-Elle got super sick overnight with a respiratory infection. She's having a hard time breathing...although she is stable right now. But as I said above, her strength is not what it once was, so we are on high alert. Please pray for her health and that we can treat her at home.
Well, that's the bulk of the past couple of weeks and I can't really write much more right now...gotta tend to this sick kiddo.
Thank you all for your steadfastness in standing with us and for us. Much love!
Dana
