We have come up with a word for our 3 1/2 year journey as our “PANDA-demic” . To be totally honest the Pandemic, the stay at home order, the inability to go out, the ability to buy more on-line, to have access to more things without going into the store, restaurant, etc has made our lives somewhat more normal. Everyone else having to stay home, has made us needing to stay home normal. 

We have been doing this in some form for the past 3 1/2 years, because of Maija’s anger, anxiety, and behaviors. To be totally honest, the hardest part is that we don’t have enough Respite Care.  It is hard to find people willing to come into our home and watch Maija, so Steve and I can go somewhere together.  Aliina is AWESOME and willing to watch Maija, but she has a full-time job and sometimes Steve and I would like to go together with Aliina somewhere.  At times we “drag” Maija along, but we really aren’t able to relax, worried how Maija will behave. This being said, if you know someone who would like to earn some money and help us out….Please let us know.

Many people inquired how Maija is doing since IVIG infusions have started.  We  appreciate Maija being in your thoughts and prayers.  We assess how Maija is doing in moments, because it changes moment by moment.  Of recent, we have to say there are more positive moments than negative moments. Maija has a long way to go to get back to base line, but we believe slow and steady wins the race. This is an ultra marathon.  We will be looking at years of treatment and recovery, so moment by moment we move forward. Loving her thru it all. Steve and I are so happy we have each other through this torturous journey.  Watching Maija being tortured by her own thoughts, is so painful.  We are so thankful that overall these thoughts have lessened. Maija once again loves to sing, use her Karaoke Machine, watch Elvis on YouTube, and listen to all kind of music. On car trips we call her “DJ MAIJ” as she enjoys  controlling what we listen to. 

The actual infusions are going well. The home care agency, OPTION CARE and their nurses have been wonderful. Maija’s Port-a-cath has been wonderful to have, it infused well, but when it came to obtaining  labs from it, it didn’t work.  I deal with Ports every night at work, and after trouble-shooting it to the max, having Maija doing “port-gymnastics”  (which she thought was torture) after 3 out of 4 Thursdays heading to LABCORP in Bloomington and not being able to obtain the blood needed, last Thursday Maija had her Port replaced. We then headed immediately to LABCORP and we were able to obtain the blood needed without problems. LABCORP has been awesome to work with, for this we are thankful. 

Autumn is the Season of Thankfulness. We are thankful