Fall 2013

Fall 2013

Wednesday, June 13, 2012

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."


  1. Hi Melanie, I sent you an email with my email addy. YaY, for the progress today, nearly pushing up into a sitting position, Wooo HOOOO!!!! Good Job Maia!!!!!
    Maybe, she will be more comfortable at home and do better with outpatient therapy, maybe this will be for her ultimate good. I understand it seems like the doctors are backing off and giving up, but maybe it's what Maia needs is to be at home and she will do better at home.
    Praying about the tummy troubles.
    I am so glad you got to go home and have a good cry and a nap in your own bed, it's just what you needed. Good for you for taking care of yourself, it's so important to do that. Mark it's so great that you can be there and do therapy with Maia and that Matthew can make her laugh. Hold onto hope Covering you all in prayer and believing for healing and miracles. Hugs to you all.
    Jacquelene L.

  2. You are right...ups and downs and downs and ups..what a day.

    Glad to hear that Maia is laughing at Matthew and did okay with OT...what a long road you are walking and how frustrating to not know the twists and turns ahead.

    I am sending love and light and ease and healing your way. Cling to your girl, to your boy and your husband. Give yourself a break and cry, cry, cry. God is near even when we feel a void.

    Love you. XOXO

  3. I'm so sorry to hear about your day...We will continue to pray for you, esp for the Lord's peace to consume your heart. I can't imagine how difficult this continues to be - for all of you.

    I just read an article about Steve Saint, who was injured yesterday in an accident. His ministry theme is "Let God Write Your Story". It certainly was a good reminder for me. I pray it encourages you too. God is good!

  4. Oh dear guys hang in there! Sending lots of *HUGS* your way and strength!!

  5. I can hear how your heart is hurting. You want a good outcome for Maia, and the medical people are implying their intervention is not making enough change to warrant continued intensive therapy. Well take heart. Now God and Maia take over. You will not be taking home a healed child, but a healing one. She may be calmer and more able to focus on improvement in her own known environment. Matthew may in fact be her greatest catalyst toward more physical activity. Please stay optimistic.

    Painful as it is to admit, when Kris was sent home I was so scared. She was not functioning at her pre-illness level. At times I was not even sure she was still in there. I knew I was not capable of doing what was necessary to help her....and I was right. I alone could not, but with God's help I did. And you will too.

    Continuing to pray for peace and strength for you, and steady progress for Maia. Praying also that Matthew feels assured that he is an important part of Maia's journey toward healing.

  6. I'm sorry I have been MIA in the last few weeks... I haven't commented BUT I HAVE STILL BEEN PRAYING!! Have not been home and internet has been sketchy. Please know that you have not been forgotten by our family!!

  7. Melanie, I just found your blog thru RR in an update about Maia. I think you live near me! We're in Winona, when we aren't in Ukraine (like now!). I'm not sure what we can do to help, but if you are really nearby PLEASE let us know--we'll be home late next week! Susan WD,


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