Fall 2013

Fall 2013

Friday, June 8, 2012


Today is day 23 here at the hospital. In some ways, it seems like it's been much longer and in other ways, not so long. Maia is still adjusting to the rehab unit routine. Her sleep patterns are a little out of whack and she's having to work pretty hard. 90 minutes each of physical and occupational therapy daily with 30 minutes of speech.

Yesterday, Maia did well with physical therapy. She seemed to struggle more with occupational therapy. Speech therapy is pretty unremarkable at present. I asked the OT and ST if my perception was correct and they both did agree. These are harder areas for Maia and she is more motivated to participate in things she does well in. I think she may be fighting a little bug or something because she took 3 naps yesterday.

Today's therapy didn't go well at all. I wasn't here for the morning sessions, but when I woke Maia up from her afternoon nap, she was NOT a happy kiddo. Screaming and agitated. Her right ear and the side of her head seemed to be really bothering her. She was not interested in working with PT at all. The doctor did come in to see her. Looked at her ear and said that it appeared a little red so he was going to order some numbing drops, but he couldn't get a clear visual. Maia eventually calmed down with some pain medication, but was not herself for a couple of hours. She did eventually cheer up, although we had another meltdown when the nurse had to do site care on her PICC line and again about 10 minutes after she fell asleep this evening. Her Ativan and Oxycodone continue to be tapered so this may play into how she's feeling as well.

On the positive side, the first two of her nasal swabs have come back negative so if the third one comes back negative, Maia will be able to come off the isolation precautions. Although it doesn't have a huge impact on us, it will make things easier for the nurses. She's eating well also. We've got to work on her fluid intake. The doctors want a minimum of 1000ml/day for several days before they are willing to remove the feeding tube. Maia wasn't drinking that much at home before so this will be a challenge. However, we really don't want to have to go home with a feeding tube if it's not necessary.

It was nice to spend some time with Matthew last night and this morning. It's hard feeling torn between the two kiddos. And I miss my hubby, too. Will be glad when we are all home together again.

I know this is a pretty boring post... it's late and my mind is kind of fuzzy so I'm going to quit for the night. This weekend should be quieter so I can share a little more of my heart here (hopefully).  I'll leave you with a pic of the sleeping princess.


  1. Oh that beautiful girl sounds so pooped! My prayers tonight will be asking God to ease this transition of hers...into more action, less pain meds...all the changes.

    Day 23. Hard to believe. Yet this is what we do for these little people who steal our hearts. Maia and Matthew are blessed to have you both loving them. I know this is their birthright, but it is also a blessing that you are their mom and dad.

    Much love to all of you tonight. MWAH.

  2. She looks so peaceful. What a beautiful picture!

  3. Found you from another blog. You are a pretty remarkable person and so is your little girl. I do not know much about medicine, but find it heart wrenching Maia has to relearn things like walking. But she seems like such a tough kid. Please know you are covered in prayer by people who do not know you.


  4. Praying for you all. I am sure at this point, being all together again seems like a far away dream. It is coming, and boy will you appreciate being together at home when you get there. You will adjust to normal....but it will be your new normal, and it will be good.

    Maia, is really battling right now. Therapies exhaust a healing body, med changes, and healing are hard work for a small girl. She probably misses home as much as you do. She has so little control over anything in her environment. Praying hard for healing, peace, and stamina for Maia.

    Praying for strength, stamina, patience, and peace that passes all understanding for the rest of you! You are in my heart.

  5. Melanie this post is not boring. How else can we pray specifically if we don't know what is really going on. There will be periods of time where it seems like nothing is changing and there is no progress, then one day she will do something she hasn't done yet. With my husband the walking came first then gradually the use of his hands. His being able to feed himself started with him being able to rub his nose. Then one day I put a dinner roll in his hand for him and after many tries he was able to get it into his mouth. Hold onto hope, keep your eyes on Jesus not on the storm going on around you. I have a suggestion for you, we were told to get a spongy ball from the dollar store and put it in my husband's hand and squeeze his fingers around the ball. We did this while he was in the drug induced coma. Maybe if you do this with Maia it would help with ot. Also I massaged my husband's hands, fingers, arms and feet with lotion while I sat with him all through his hospital stay. I would pray while I massaged. I don't know if these ideas will work for you or not they did help us. The ball squeezing reminds the brain of the way the fingers worked before and this triggers the connection to being able to do it again.
    You are all in my prayers. Maia is going to amaze everyone, she will be a shining example of God's miracles and His power and His glory.
    Hugs to you all.
    Jacquelene L.

  6. Love coming your way this afternoon...


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