Fall 2013

Fall 2013

Tuesday, August 7, 2012

One of these days...

We are going to have a day when we don't do anything, go anywhere - just hang out at home together as a family. Seems like we always have someplace we need to go and today was no exception.

Maia had therapy this morning. Physical therapy was first and Maia walked a good distance - probably about 250 feet - with Linda just holding on to one hand. She did decide she was going to set down once, but those legs are getting stronger. Worked on getting Maia up on her knees, too. She's starting to do that just a bit and if there is something she is really motivated to get, Maia will do a near crawl for a couple of moves. Progress!

Maia's time with Amy (OT) was spent working with balls and blocks, encouraging her to "hold" them and guiding her hand to put them in a specific place. This is a lot more difficult for Maia. Even before, her fine motor skills were not quite as good as her gross motor. So, it isn't a surprise that this is still the same now.

The therapists suggested today that Maia's sessions be cut back to once/weekly. They feel that she is continuing to make progress and that they are more in the coaching mode than anything - giving us exercises and suggestions for things we can do to help Maia's recovery. I think that perhaps my expectations need to change. I had been going along with the thought that we would be "gung-ho" with rehab with the goal of Maia returning to her "norm." But, reality will likely be different.

I'm struggling with how to balance those two things. I don't want to limit Maia's recovery or set my hopes too low. Our God can perform amazing miracles! But, I also don't want to live in a fantasy world and be shattered if Maia doesn't regain everything she has lost. If anyone reading this has any suggestions for how to be realistic while still keeping hope alive, I would love to hear them. As always, I will pray!

Maia had her eyes checked after lunch. We had ordered new glasses for her just a couple of days before she got sick and didn't know if the prescription would still be appropriate. At the last visit, it was looking like Maia was going to need another eye surgery, so I was kind of dreading today's appointment. Not sure I could take her back to the hospital for another surgery in the near future. Even going to the hospital today for therapy made her a bit apprehensive. Anyway, the good news is that no surgery is needed at this time. We will need to start patching her right eye for several hours/day for one month, get her glasses remade (the bifocals were placed too low), and see Dr. B back in four months. So thankful that it's as easy as that.

This afternoon, Maia's new wheelchair was delivered. It is perfect for her!! The company that we got it from is owned by a brother and sister team who are amazing. They are the ones who brought it to our house. Once Maia got in it, they fine tuned and adjusted things so that everything fits just right. Here's our girl in her new ride!

Although it saddens me that Maia had to endure yet another surgery, I do think that it has made a difference. There is just a bit of a spark that wasn't present last week. Praying, praying, praying that she does not need any more surgery for a LONG time!

Matthew and I enjoyed a little time together today, too. Cute conversation as we were sharing some ice cream.

Matthew: Mom, why you take care of people at work?

Me: That's what God wants me to do, Matthew. It's my job and He wants me to care for others and help them get better. 

Matthew: No, Mom. God makes them better and Jesus, too!

Me: Yep, kiddo - you are RIGHT!

Love that sweet boy of mine!!


  1. Praying along with you that Maia is finished with surgery for a very long time. Rejoicing that there is a new spark there, and that her gross motor skills are showing improvement no matter how small. That has to come before improved cognition and fine motor. Patience, one of the hardest things for me, is what is called for now. You already know to provide enough stimulation to reach her, and not so much that you overwhelm her. Now time is what she needs. Her clock has reset from her latest surgery....a year until you know where she really is. Until then, expect a little more than you did yesterday, and hope for a little more tomorrow. Praying for all of you.

  2. I can't help but believe that if people can come out of comas after months or years that you just might continue to see some progress from Miss Maia. I think you just accept her exactly where she is, yet always be open to helping her take that next step. Which is kinda what I figure you would do anyhow. I think you are a beautiful mother, and I wish you peace with what is and continued strength to cope with a difficult situation. Best, Lisa

  3. Praise the Lord for progress!!!!! She does look brighter and more like herself in the last picture, to me I see a difference. Praying, Praying, Praying. The only suggestion I have from my experience with my husband when we didn't know how he would progress, was one day at a time. Keep trying new things because you don't know whethor or not today might be the day when there is a change. My husband started feeding himself when I had the thought of putting a dinner roll in his hand, he messily got to take a first bite from that roll. It's like looking after a baby or toddler the progress can be little or it can be big like walking unassisted. It all takes time, lots of prayer and blind faith and keeping your eyes on the Lord and hard work, lots and lots of hard work. One day at a time sweet girl. Prayers and hugs to you all.
    Jacquelene L.

  4. Oh, what sweeties you have! Love the new photos of Maia - that spark is coming back to her eyes, very visibly. And Matthew - wow, out of the mouths of babes, really!

    As for Maia's progress: it wouldn't surprise me to see her undergo a series of plateaus, during which nothing very dramatic seems to happen, but then to see her make real progress afterwards, almost as if she's pausing to gather strength before moving ahead.

    Rehab often requires its recipients to make continual progress, unfortunately, rather than taking plateauing into account, so you may need to be very assertive to make sure Maia continues to receive full and appropriate therapies. A journal of her progress during the time her therapists are not with her might provide needed documentation if this projected scenario occurs...also, videos would help document both her needs and her progress.

    I hope you all can find and fully enjoy that much-needed, much-deserved restful day right away!

    Best wishes,
    Susan in Ky
    Cousin to 2 from EE


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