Today was all about training! We spent the whole day learning about transportation and G-tubes and everything that goes along with it. John and I were given specific training on the "correct and safest" way to move Maddi from place to place. In this situation being vertically challenged is an asset! It is harder for people who have height on their side.
She is spending more and more time up and about. We have been given the green light for regular clothing now. Specifically clothing that will work well during therapy!
Yeah! Now Maddi can get her stylin' mojo back on! We plan to choose two outfits one that is really cute that we know Maddi will like and one that is stinking ugly. That way it gives Maddi an incentive to make a choice in the morning. I have never been a parent to provoke my kids but this is an exception. I guess I will have to go into a store this December after all.
Maddi now has her second belly button. They did her surgery at about 4:00. We were glad they had a cancellation, otherwise she would have had to wait until 7:00pm or 1900. She looks great without the tube going down her nose. This will make it easier for her to learn to eat on her own again and will allow for better speech as well. Little by Little
Maddi was really "quiet" today. I know she isn't speaking yet but for those of us with her everyday we have become really good at reading her moods. She worked really hard with the PT and OT today. She was actually using her whole body to try and scoot across the table today. That was really exciting. The PT/OT team want to put her on her hands and knees tomorrow!
They said that sometimes with TBI (Traumatic Brain Injury) kids, they do have a real "quiet" day after a really busy one. The theory is that they are still processing the information from the day before. I would agree with that assessment. She had a lot of visitors yesterday and she did fabulously well with all of that stimulation!
Anyway, I was joking with one of the nurses that I should go take my CNA test after all of this. The nurse replied, "Well, really you should go after the RN since you have way more clinical hours than the CNA requires."
Maddi has lots to learn and so far to go but she will get the job done. She is a worker!
I know I have said it before but thanks for all of your support through prayers,thoughts and just good KARMA coming our way! I hope that all of that positive energy is returned to all of you a hundred fold!
Great to hear that she is trying to scoot across the table!! Before you can walk you have to crawl (again in Maddi's case)....but you're right, little by little,line upon line!! You must be exhausted too!! I hope you get some rest..to recharge your batteries for even an hour. But I would imagine, that I wouldn't want to miss a thing...a movement not made before, a gesture or facial expression. Prayers and thoughts are constantly with all of you. We love Maddi so much!!
ReplyDeletePam
I'm gonna have to get me some waterproof mascara! I'm getting tired of explaining the black lines on my face :)
ReplyDeleteI had a moment of frustration yesterday where I thought if we just didn't know Maddi we wouldn't be going through this. Then I immediately realized how lucky we are to know Maddi! How this wouldn't be painful if she weren't such a wonderful girl, so full of life. Thank you for letting us share your daughter with you.
We wait anxiously for your posts every day and are so excited to hear even the smallest bits of progress.
You are constantly in our prayers.
So glad she is doing well with stimulation! My kids talk about her constantly, and little Porter is our prayer patrol, he'll let you know if you don't pray for her first thing in your prayer.
ReplyDeleteGlad to hear all of her progress! Where I only see her weekly I've seen huge progress, so yes measure in weeks I've seen it. Hope to see her again soon, I've got a cold right now so I'm staying away.
Love you all, call if you need ANYTHING!!!
Go Maddi! I can't wait to come visit this week!
ReplyDeleteGreat job Maddi! We are coming up Friday! Bev, i'll call you Friday morning to check with you on times.
ReplyDeleteThats great! It's sad though because shes being taken out of school for the rest of the year! So I won't get to see her a lot and unless she takes summer school she'll have to be in eighth grade again!
ReplyDeleteLoved the comment about a stinking ugly outfit. That is a great way to get a response from any teenage girl!
ReplyDeleteI look forward to the updates every day. Please tell Maddi how much I love her. I look forward to a visit soon.
Not a single prayer has been said by the girls at church or an activity where they didn't pray for Maddi! It has been really neat to see the love that the girls have for each other.