Fall 2013

Fall 2013

Monday, June 18, 2012

Back to rehab

Maia was cleared by the neurosurgeons to return to the rehab unit and after spending the morning and part of the afternoon waiting for the official order, we moved back to our old room around 2pm. Only partial therapy today because of the transfer. Unfortunately, she hasn't had PT since Saturday (VERY limited then) and I see the difference in her leg strength. OT went pretty well, Maia allowed her right hand to be moved more (she has been very resistant to any touch or manipulation of the hand). She is slowly getting used to being on her stomach and using her arms to push herself up. Mostly, she scoots herself backwards. We had a new speech therapist today and I really liked her. She took the time to sit and ask questions about Maia's previous speech... what her favorite words, sounds are, what kind of things she likes to do, what our usual home routine is. Had two of our favorite nurses today after getting back to rehab. Ashley came in and said, "I knew Maia was back because I could hear her all the way down the hall." :-)

She's having some problems with vomiting. Happened twice this afternoon. Once was shortly after taking one of her anti-seizure medications and the other was during dinner. My biggest concern is that this can be a sign of shunt malfunction. Maia has been pretty "burpy" over the past week or so. Hopefully, that's all it is. Please pray that this vomiting improves and her intake also increases. On the positive side, we did get approval to try some new foods. She's been on a pureed diet. Tried some Ge*ber graduate puffs and also a pre-packaged toddler meal to see if she could chew and tolerate the consistency. They both went well, although she was not thrilled about the taste of the meal - lol!

Thanks for your prayers - specifically for me today. I was really struggling last night and this morning. Just feeling exhausted, overwhelmed, and empty. This morning something happened over on the peds unit that had me so angry. I won't go into the details, but I'll just say that I wanted nothing more than to scream at a specific person "Come in here and look... see what the results are of you repeatedly telling us 'There's nothing to worry about. Everything is just fine.' " I know that somehow I will have to forgive all those involved, but right now I'm still very angry.

Anyway.... I digress. Although I am still not where I would like to be emotionally, I feel better than I did earlier today and I know that your prayers are the reason for this. So, thank you!

At this point, we're not sure if Maia's discharge remains scheduled for Friday or if this will change based on her most recent surgery and lack of therapy over the weekend. Hopefully, we'll know more tomorrow.


  1. I've started this comment 3x and keep deleting it! I have no words but that we are continuing to pray for you all. That's good she tolerated some new food textures today though. Praying that if the vomiting is the result of "something" more serious, that the cause if found quickly.

    I know you know this, but the Lord has walked with you every step of the way and will NOT leave you. I pray you will feel in a mighty way His peace and strength, holding you up every minute of the day.

  2. Good that she is restarting rehab. Funny she didn't like the taste of the food, that sounds like a good thing. Glad you are feeling a little better. I think the anger is the natural part of what you are experiencing, I would feel the same if I were where you are.
    Praying about the tummy issues, believing for answers. Uplifting you in prayer, believing for strength, endurance, courage, and blind faith.
    Praying for all of you. Believing and claiming the victory for Maia, in the name of our Lord Jesus Christ. Hugs to you all.
    Jacquelene L.

  3. Praying that God moves any obstacles to Maia's healing and that you continue to experience shifts in your energy and perspective and emotions that come when you need them. Your beautiful girl and your beautiful family is covered in prayer as you walk this unwalked path (does that make any sense??? It is late!!)

    Anyway, all attempts at eloquence aside...love to you tonight and as you begin tomorrow...

  4. Sounds like things are going pretty good :) I so hope you get to go home soon! Praying!

  5. Each time you cross my mind I say a small prayer for you. If I lived close by, I would do something to help in your real life.....put meals in your freezer, vacuum your house or run errands. I feel such compassion for you right now. You are in the long dry spell. Gains are small, worries are big, everyone around you continues on with their life as normal, and all you want is some semblance of normal back. Some of us have been there and we understand where you are right now. So I will continue to pray often every day for you and Mark and Matthew, along with my prayers for Maia's healing.


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