Fall 2013

Fall 2013

Saturday, June 9, 2012

Thoughts and another day

I guess I should have titled today's post "Another day and thoughts" since I am going to start out with the day. You'll just have to bear with me. :-)

Miss Maia was up early this morning - 4am to be exact. She fell back asleep around 7am and did manage to get another hour of shut-eye before I had to wake her up for breakfast and get her ready for therapy. The first OT session went pretty well. Plan was for a nap between OT and PT, but that didn't happen so PT didn't go quite so well. After lunch, Maia had more nap time scheduled but it took her long enough to eat lunch that there was no time for nap. Needless to say that her afternoon OT and PT were not too successful. Please pray that we can find a routine to allow for enough rest time so that Maia tolerates and is cooperative with the therapies. If she is not able to work with them for enough time daily and does not make progress, insurance will no longer cover her inpatient rehabilitation and she will be discharged.

She had a busy, social afternoon. No nap, Maia just would not allow herself to fall asleep. I think this is the one area that she can control and boy, does she exercise that right - lol!!  Nana and Papa visited, then some friends also came to visit. By the time dinner was over with, Maia was wiped out. She fell asleep around 7:30pm. I'm praying that she sleeps through the night.

Matthew and I went to the movies this morning. One of the local theaters offers a free second run movie on Saturday mornings. Of course by the time you buy popcorn, etc., it's still not a cheap outing but we had fun and it was good together time. There was some type of promotional display in the lobby. Think we may have a future rock star on our hands. ;-)

So many thoughts run through my head lately that I want to share here. Unfortunately, most of them truly RUN through my head and by the time I can actually blog, they are long gone. But, I want to tell you how much it means to us to read your comments and feel your ongoing prayers and support for not only Miss Maia, but our entire family. I can only imagine what it would be like if we did not have this amazing group of people uplifting us.

I have to admit that the novelty of an extended hospital stay is wearing off - lol! There are so many things that I used to take for granted... cooking a meal, taking a decent shower, going grocery shopping, devotional time in the living room recliner before the kids wake up, seeing friends, going to church, all of our typical daily activities.  And still... it's difficult for me to leave the hospital for more than a few hours. There is a little girl who pulls at me (even though she doesn't know it) as soon as I walk out the door.  But, there is also a little "big (his word)" boy who pulls at my heart as well. And an even bigger boy who I miss spending time with, too. Somehow, sharing dinner at the hospital and the peck on the cheek as we are trading places with the kids leaves me yearning for a bit more normalcy. I pray that we are on the downhill side of the journey towards that.

There are definitely glimpses of our sweet girl that show through. Several months ago, Mark was teasing the kids and calling them "poopy (is that how you spell it?) heads." They thought this was hysterically funny. I asked him to come up with different nicknames because I was worried that they might call kids that at school. I didn't want teachers calling to tell us our kids were being rude to others. Anyway, today I called Maia a "poopyhead." She giggled and giggled. Matthew can make her laugh like no one else with some of his silliness. And you should have seen the smile on her face when Nana and Papa came to visit today. She knows who the important people in her world are.

Today, we had another step in the right direction. Her third nasal swab was negative so she is no longer on isolation - YAY! Her blood pressure has been kind of wacky yesterday and today with diastolic (bottom number) pretty low. Her heart rate has also been high. No one seems too concerned at this point so I am not stressing much. But given how "normal" she was up until a few hours before this whole thing started, I am hypervigilant about anything out of the ordinary. Please pray that all her vital signs return to baseline and remain stable.

We are maintaining and we will get through this. God is bigger than anything we are going through and He reminds me of that as well. Again, thank you friends for your part in our journey!!


  1. Novelty is wearing off I BET! 25 days in the hospital is enough for anyone! You are so dedicated and Maia is getting through this. Hopefully the therapists will work to find a schedule that works for Maia. She sounds so darn pooped through all of this. I can only imagine how exhausting her healing is inside her body.

    God is bigger than all of this. Love is bigger than the fear. Loving thoughts to all of you and a big, long distance hug to you as this Saturday ends.

  2. Hi Melanie. With Maia's ot and pt schedule would it be possible to do pt in the morning and ot in the afternoon instead of doing one session of each morning and afternoon. Perhaps with her sleep issues doing both morning and afternoon is too much. Also I wonder is she afraid to fall asleep. I know after my husband's drowning accident our son noticed he was mouthing the words "help me, help me", as he was falling asleep. So I think she might be afraid to fall asleep, maybe she is afraid of another seizure or just not waking up. Just my thoughts, your the mom and you know her best.
    I was also wondering if maybe the Grandparents could give you and hubby and hour or two off to have some time alone togethor, I think you really need it. Maybe Matthew could help them entertain Maia, it would be something important he could help do. Covering you all in prayer and believing in miracles. Praying she will be able to sleep and do her all her therapies in the name of our Lord Jesus Christ.
    Hugs to all of you.
    Jacquelene L.

  3. Your strong little girl is showing how strong she can be in the only way possible right now...by staying awake. Would be nice if she could find a new way to show that strength, huh? Possibly she knows much changes for her when she is or has been asleeep and she fears that? Just a thought.

    Isn't it strange how after living the hospital life for so long....a life you as a nurse thought you knew...you long for the little things from your REAL life. Even the things that used to annoy you start looking pretty good.

    Praying you see measurable changes today. May Miss Maia feel hungry enough to eat, rested enough to participate in therapy, and calm enough to sleep. Praying Matthew feels your love, and shows you how much he loves you because right now Maia can't, and you both need that reassurance. Praying Melanie and Mark can get some rest. Praying your fatigue and concern and valid fears don't get in the way of your love for each other. Praying for you as a family.


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