Fall 2013

Fall 2013

Tuesday, June 5, 2012

Exhaustion and the power of prayer

Exhaustion... well, that has to do with my sweet girl. She had a full day!! I got her up for breakfast at 7:30am and she was eating when Nana and Papa arrived at around 8am. Matthew and I left for his speech therapy appointment while Nana continued breakfast and then helped the occupational therapist give Maia a bath. Following the bath, she had speech therapy then OT and PT. Quick nap before lunch. Maia has 90 minutes of nap time designated after lunch, but she was not interested today. Squirmed around in bed until it was time to go back for more OT and PT. She is showing how strong she is, stood up with the therapist providing stability only. Maia has significant ataxia (inability to control voluntary muscle movements) and her arms and torso just kind of thrash around, so balance is non-existant when she is standing. She is able to manage some control when in a supported seat, but must be watched very closely to ensure that she doesn't tip herself over. This afternoon, therapy worked on a special "kid's cart" that will provide trunk and leg support for Maia. She is too big for a stroller, but isn't stable enough to sit in a wheelchair. They are adjusting it to fit her correctly. Also tried a special walker that offered some support as well, but she just doesn't have control over her arms and hands to hold on to it. There may be a different one that they can obtain from another location which will be better. All in all, the physical therapist is amazed at how strong Miss Maia is. I didn't get the impression that OT went quite as well. But, it is only day #1. By the time afternoon therapy was done, Maia was wiped out and cranky. I took her for a walk, then put her back in bed thinking she might nap for a bit before dinner, but determined girl did not want to give in to sleep. Fed her dinner and then she watched a bit of tv with Mark, Matthew and me as we ate. Finally gave in to exhaustion at about 8:30pm. She's doing pretty well from an intake standpoint. Calorie counts for a few days and then her tube feedings will be adjusted accordingly. Her pain and anxiety medications are being titrated down slowly.
Dr. B (neurosurgery) stopped by this evening and examined Maia. He said everything looks perfect with her shunt and incisions. One of the questions I have wondered about is if there is the possibility that the shunt which was placed in February was contamination so I asked about this. Dr. B said he couldn't rule it out, but also couldn't say for sure. He feels that the infection has something to do with her non-healing incisions from February's surgery. A typical shunt infection is one bacteria and the fact that Maia had six different bacteria is a mystery. Infectious disease doctors attribute the infection to some type of problem in her gut, but don't know what that is. So... bottom line, we will likely never know the cause.
Ok, well part of my title is about the power of prayer. As I was praying over Maia this evening, I was thanking God for all of the people that have been praying for our sweet girl. It occurred to me that I will never truly know how many people have stormed heaven on her behalf. How humbling it is to know that people around the world were praying and continue to pray for Maia. Proof that the power of prayer is miraculous and that God honors the prayers of His faithful servants. I've said it before, but thank you to all who have uplifted us in this journey. We have been sustained and blessed because of your support.


  1. Her determination will make her recovery amazing. That will be her driving force and miracles from God. I am glad to be a prayer warrior for your family. I hope Mark's dentist visit was successful. Thank the Lord for the family support you have from your parents, YaY Grandparents! Hugs to all of you.
    Jacquelene L.

  2. Wow! I'm reading through your post wondering what caused those infections and a few sentences down you talked about what the doctor had said. A mystery. The good news is, we know the One who this is not a mystery to. He is our healer and the One who gives us rest. Praying for a good night for you all!

  3. The Pierce'sJune 6, 2012 at 8:50 AM

    Thinking of you guys daily, praying and hoping that each day gets a little bit easier and a littel bit brighter. As long and hard as this journey has and will be, in the end it will all be worth it and If God can bring you to it, God will bring you through it. Keep your head held high and know that even small progress is still progress. God Bless!

  4. Hi guys...glad to get an update and hear that Maia is on a schedule of activity which will hopefully help her regain some of the impairments she has suffered (don't really have the right words for this sentence, but you know what I mean, right?)

    I am thinking about Maia and sleep and wondering if you might trick her with some new associations to sleep. Do you have a sound machine? Something to make white noise or the sound of waves? I am wondering if you put one near her head on a low level once she falls asleep if you couldn't begin to help induce sleep when she is winding down? It sounds like a lot of the holding onto wakefulness is driven by control and anxiety, I am just curious if you couldn't go through the back door to get her to associate some ambient noise with relaxation. That is what we have done with our kids over the years. If you need me to get you a sound machine, I can asap and send it off to you.

    Anyway, take my suggestions with a grain of salt if they don't fit. I am not there with you and have ideas that sound good in my head but may not be applicable.

    Anyway ,love and prayers to you this morning. XOXO Jane


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