Fall 2013

Fall 2013

Friday, July 13, 2012


Maia had her follow up appointment with Dr. S today. She was very pleased with how Maia is doing. Looked at her scalp incisions and thinks they are healing well. Was happy to see the progress she has made with therapy. I had some questions, but they will have to wait for the neurology and neurosurgery follow up appointments which are in the next couple of weeks.

And speaking of therapy, the PT and OT are both also happy with how Maia is progressing. So pleased in fact that they are decreasing the frequency of her therapy to twice/weekly. I have mixed feelings about this. They reassured Mark that it is because they can see that we are working with her at home and know that it is making a difference. They don't feel that seeing her one time less a week will make a difference. I'm glad they are happy with how well she is doing. Mark reminds me that they are looking at things from a much different perspective than we are. Amy (OT) and Linda (PT) are seeing where Maia was a month ago and making comparisons based on that. A month ago, she was just starting to push herself up from a lying to sitting position. The feeding tube came out one month ago today. Maia was still having agitation, anxiety, vomiting. We didn't realize that she would need repositioning of her shunt again one month ago. And that's the perspective they are looking at. Mark and I are looking at where she is today compared with where she was 2 months ago today. And two months ago today was Mother's Day. Maia was running around, playing with cousins, charming other relatives, her sweet self.

Anyway... from our perspective, it's sometimes hard to get excited about how she is progressing. We want her back to her pre-illness self and we want it now. Not impatient or anything - lol!  So, we are learning to readjust our perspectives and thank God for the gains Maia is making.

  • She is able to take a few steps now with me just holding one hand and does well walking when both hands are held.
  • The abnormal movements have decreased (although they are still present to some extent). 
  • Maia is showing more comprehension of the world around her and tracking more.
  • She is starting to reach out and touch items. I just bought her a "discovery" ball that sings the ABC's when it is rolled. She seems to really like that and is able to turn it a bit.
  • Is tolerating regular foods.
  • Laid quietly in bed tonight after story and prayers - making eye contact with me and occasionally smiling. Oh, those were precious minutes. 
So, there are reasons for rejoicing. And they are proof that your prayers are reaching the right place. Thank you my friends and family! 


  1. "Laid quietly in bed tonight after story and prayers - making eye contact with me and occasionally smiling. Oh, those were precious minutes."

    Praise God indeed. Those must have been so beautiful! I am glad you took note of them.

    Acceptance of where we are at any moment is so crucial and so challenging. I am so thankful Maia is still here, given her harrowing journey.

    Much love to you all...

  2. Rejoice in the Lord always, again I say rejoice!
    I am rejoicing in Maia's progress, Praise the Lord for He is good. She is amazing us! Look what she can do in such a short time, Yippy Skippy!!! I am typing the joyful, happy dance. Maia is Improving!!!!!!!!
    Continuing covering Maia, and you, and your family in prayer. Believing for healing, for miracles, for progress, for communication.
    I hope you have a good weekend and spend fun time with your family, enjoy!
    Hugs to you all.
    Jacquelene L.

  3. I'm picturing those nerve endings in her brain finding new pathways around the damage. Little by little her personality and communication skills are coming out. She stays in my prayers.

  4. So pleased that Maia is starting to react to her world. It must make your heart sing when she looks at you and you know she is actually seeing you. The small steps forward are so significant after waiting so long for progress. My prayer is that each day you will see new accomplishments no matter how small. I keep praying for you and your continued strength and hope.

  5. Hi. I found out about you through Julia Nalle's blog and I am thankful to hear Maia is improving! Would you mind telling a little more about what actually happened with Maia? I've tried going back through older posts but I'm still not really sure what happened with her. I can't imagine the road your family has been on these past few months. I will definitely add you to my prayers. ~Katie


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