Ups and downs

First, I want to say thank you to all who have sent words of encouragement and prayers following my post last night. I know that they have helped. I won't lie... I'm still struggling, but the tears have eased a bit.

Today has been a day of ups and downs - or perhaps downs and ups. Maia did all right at breakfast this morning, not great but managed to get a bottle of Boost in and ate a few bites of food. Occupational therapy went well and she is nearly able to push herself up into a sitting position when lying on her side. Way to go, sweet girl!!

Mark came during her morning break and then headed to physical therapy with her. I had to get the keys from him as I was planning to head home for a few hours. When I got back to Maia's room to grab my things, the doctors came in and shut the door. I knew what they were going to say, I've felt it in my gut for several days now. Maia is not making much progress. Last week, they had extended her discharge date to June 29, optimistic that she would improve greatly with the therapy regimen. While there have been gains, they have not been enough to justify the longer rehab stay. The team will work with us to determine what adaptive equipment is needed at home and help us obtain it. Maia will be discharged next week. She will continue outpatient therapy.

I wasn't surprised, but it still was difficult to hear. I admit... I want MY plan for Maia's life, I want to MY miracle for her. In my heart, I understand that God knows better than I do. However, I wish I had a glimpse of His plan. I can call to mind so many Bible verses meant to comfort, but I'm still struggling to find peace at the moment.

Following the discussion with the doctors, I went home and took a nap. It did feel good to crawl into my own bed and shed a few tears there. Came back to the hospital and found Mark and Maia out in the courtyard. It was a beautiful day and Maia was on her trike with Mark pushing her around. My friend Jeanne stopped in for a visit, then Mark's parents arrived with Matthew (he spent last night there). Mark's friend Brad dropped by a little later. Matthew loved having lots of attention! And Maia loved laughing at Matthew - lol!

Maia vomited after dinner tonight while taking her medication. The nurse was concerned about her feeding tube being "out" further than it should be, so the doctor agreed to pull it. This means she has to take all of her medication orally. After it came out, she had some more medications and vomited again. Please pray that things settle down and there are no further issues with that.

She's asleep at the moment and hopefully, will remain there until her 1:30am medications. Her mood was pretty good today so that's a positive. There has been some elevation in her liver function tests so these will be rechecked on Friday. If they are ok, the PICC line will be removed before the weekend.

So, that's the latest. Again, thank you for your kind words and prayers. They truly touched my heart!! 
Jacqueline, Would you leave me your email address? I'd love to drop you a "note."