Fall 2013

Fall 2013

Friday, June 1, 2012

Friday

Finally today, I managed to put make up on in the morning and not cry it off all day. For most of our days here at the hospital, I have not bothered to attempt make up. And on the days that I have, it hasn't lasted long anyway. But today was a no tears (well, just a few...) day.

Not much to report on the medical side. Maia will complete her last doses of antibiotics tomorrow. She will be monitored to ensure she does not begin to develop signs of a recurring infection after these are finished. I asked what would be next steps if this would happen and was not given a clear answer. I get the impression that management options are very limited. So, please be praying for our sweet girl to remain free of any infection following discontinuation of the antibiotics. Also, pray that the frequent loose stools will decrease after the antibiotics are done. Her bottom is so red and raw. :-(  I think that one of the anti-seizure medications will be stopped tomorrow or Sunday now that the other two are at therapeutic doses.

Occupational therapy worked with Maia this morning. Stretching exercises and we got her up in a special chair/positioning device which enables Maia to recline a bit, but be supported in an upright position as well. Her head tends to hang forward so this allows it to rest back, although it takes some encouragement for Maia to cooperate with this. She ate about 2 tsp of yogurt with much fuss. I guess this is a start. We want eating to be a positive experience for her so can't push it too much. Since her tube feedings are continuous, she likely has little appetite right now anyway. Plan is for the feedings to be shut off for a period of 2 hours tomorrow to see if her appetite can begin to be stimulated.

Physical therapy also came and helped us sit Maia on the edge of the bed for a minute. We then got her in a stroller and were able to go outside for a little while. It was so nice to enjoy the fresh air. Maia slept through it, but Matthew had fun running around while Mark and I took turns chasing him.

Matthew and I spent the afternoon together. We went out for lunch, then to the park for a while. Stopped at a garage sale, had some amazing ice cream, and came back to the hospital. It was such a treat to be with him! Love that kiddo!

Maia had a pretty good evening. She was fussy a couple of times, but did calm down without any extra medication and she's sleeping now. I'm pooped and so I think I'll join her!

5 comments:

  1. Ending this long week sending love to you Melanie, Mark, Matthew and Miss Maia and your wide circle of family and friends supporting you out there...Glad to hear Maia is getting the therapies she will need to get herself back on track. I am sure this is a trying time as you want everything to happen NOW. I will keep asking God to take care of all of you and pray that you all feel God's love. XOXO Jane

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  2. Oh, it sounds like a better day! Still praying! I hope you all get good rest. :)

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  3. We are praying! (((HUGS)))

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  4. So glad you had some measurable positives in your day. You all need that! Would it be possible for Matthew to have a snack of yogurt when Maia has her little bit? No one really enjoys eating alone, and both might feel included then. Sounds like you are moving in the right direction. Now we will pray that Maia's infection is gone for good! Praying for all of you, and that you can find peace and comfort in every gain, no matter how small.

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  5. Praise the Lord for a good day! I am so glad that you were able to have some "normal time" with Matthew, you both needed that. It sounds like the rehab team are headed in the right direction with Maia. Will pray about no recurring infection. She is making progress and every small gain is actually huge, celebrate every bit of progress. She is going to amaze everyone with how she progresses. Stay positive, trust in the Lord, be patient. God is in control. Hugs to all of you.
    Jacquelene L.
    Canada

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