Home

We are trying to get out of the hospital on Friday and leaving any hospital is always a hassle and a gamble.  (Keep in mind we have an appointment at 1:00 with the pain neuro doc, who is not IN the hospital.). Liberty's last treatment began at 8:00 am.  Around 10:30 Libby's IV died after four days of hard work.  This meant another IV installation, which added another thirty minutes. It's 12:40 and discharge papers have been signed and I HAVE them in my possession.   I know we'll make our appointment, but this is cutting it a little close.  

Libby has now had five days of IVIG treatment and we may not see the advantage for a week. Hoping that her Dystonia settles down.  This is how the thinking has to go. 

1. Is this treatment/procedure terribly invasive? Do the risks outweigh the possible gains?

2. What is her level of discomfort going to be during the proposed treatment/procedure? 

3. Is their data to show that the results can be measurable?   

4. If we don't try this treatment/procedure, will we regret not having exhausted every avenue?  

There ya go, so we tried the IVIG and not too bad,  so far.  It's now Saturday morning, 7/20, and she's a fussy, tired, locked up mess, but she's cute and she's home. 

I am not happy about these skin biopsies and where they are placed and how icky they are.  That's all.  I am not happy about these at all.   We won't know the results for up to four weeks.  That sucks.  Long time to seriously worry and prepare myself for these life changing results.  If these results are negative, then we are back to square 500,291!  Yes, she has Lyme, but there has to be something more going on.   I just wish it would go away and leave this child alone.

Mariah now has the key

To her very own place.  I cannot shine what this feels like for her.  She is doing something I never really did.  I did live alone, but there was always a little one involved.  She is completely her own and I hope and pray she relishes this opportunity. 

And, she's living in her very own secret garden! May she take the time to heal herself and focus her twenties in the beautiful life she has now and ahead of her!!  Proud mama!  

It's now Friday and we've been home for the whole week.  We've managed to wear ourselves out every single day.  We've mowed, cleaned, organized, made it to therapy, ripped carpet out of both bedrooms and will be sanding and finishing the rooms today.  I cannot explain the sense of urgency I feel.  I just know that in many ways time is limited. I'm nesting and both my eggs are definitely hatched.

Our bathroom redo has been approved and the walk in shower for Libby will begin being installed next week. I cannot continue the ugliness that occurs every single day during Libby's shower time.  That is truly the most dangerous time of her day.

We bought another new car and Mariah will take over the Tucson.  Knowing that she is in a reliable vehicle helps the guilt/worry/pride cycle. 

7/26/13 

And by the way, if this last week has been any indication of Libby's reaction to the IVIG treatment, we won't be doing this again!  She has been in lots more pain, locked up, pissy, whiney, and a whole bunch of yuck since we returned. Not fun!