Quiet Sunday

It is only 10:20 so there is always time for change.

I didn't post yesterday because we took a break in the afternoon to spend some time with Mason and Brooke. It was so fun to ride "the train" with them and have normal meal at Applebee's. It was an hour wait to get that table but laughing and talking with those two kids was worth the wait. We meant to do some shopping but really didn't have the chance. I guess that will mean another outing.

If felt good to feel a little "normal" for a minute. I love those kids! I have missed their humor and their little conversations. It is amazing how much I have missed them! I am amazed at their strength and ability to cope with this situation. I have always known them to be amazing and strong but sometimes in the face of difficult things it is hard to rise up. They have done so well! I am proud of who they are and how well they are taking care of each other.

As for Maddi, she is doing pretty well. It has been a full week without any "Storms". That is reason to celebrate! Visualize me doing the happy dance in her tiny hospital room. I would have to be on the ceiling from lack of floor space but I would be doing it!

She has a good day at therapy yesterday, Sunday is the day of rest in that regard. I think it helped that one of the regular people was working with Maddi. She seemed to recognize her voice and they used the same procedure as before and she responded much better with that. She used her legs to help get them on the therapy table and she moved her arms off of the ball just like she did on Thursday. It was so encouraging!

The pet therapy people came by with a do that looks just like Josie. A black standard poodle named Elliott. Maddi got really excited with him. She started moving her mouth and even put some air through her vocal chords. It was so fun to see her have such a great response to something familiar.

She is working hard and is starting to hold her head up better too. I know that these things seem tiny to the outside world but for us here, those are the steps that keep us hopeful and positive. We have started stimulating her with smells and she is responding very well. Chocolate pudding created a great response in Maddi. The smell of cinnamon also brought a great response. I knew that smells were working while still in the PICU. Aunt Julie gave us some hand lotion and she loves it! I put it on her hands and feet and I definitely get a great response.

She is on the schedule for Monday to have a second belly button put in. It will be used for the same purpose as the first one......feeding. Right now the tube is going down through her nose and most people don't like that. The OT also says that most of the time the swallow and the ability to eat doesn't come back until that tube is out of the way.

It will make therapy so much easier and the risk of Maddi becoming disgruntled and pulling the tube out on her own is so much less. It has to stay in place for at least six weeks. That doesn't mean she has to eat that way. Hopefully she will be able to eat via regular food soon.

The stimulant seems to be working, she seems more aware of her surroundings and is responding to things more consistently as well. She has handled the extra visitors well and is getting out of bed at least three times every day. That seems like a little thing but before just changing positions in bed threatened to bring on a storm so this is fabulous news!

When they said to measure progress in weeks and months they were completely serious. So after reflecting back to last Sunday still in the PICU and not responding to much of anything, things are going really well.

Thanks for all of the prayers, letters and emails. I wish I could respond to everyone to express my appreciation personally but we,as a famiy, want you to know how much your concern and prayers help us through those difficult moments when we are longing for what was! Thank you so much!