Daddy's here for a visit! It's always fun to see my husband, especially after a whole week. Gabe didn't come up because he wanted to spend the night with his friend. No biggie. He'll come up next weekend. Manny is staying at the Ronald McDonald House, which is such a nice place. I mean they help families with sick kiddos and a lot of it is run on donations and grants. Today I met a little girl at RMH that was in a little wheelchair, I think it was the smallest I'd ever seen. I bet she was about 4 years old. She had so much personality! I was carrying an armful of stuff and she asked me what every single thing was and what it did. I was a little afraid of her by the end of our meeting because she was so determined to know why I was carrying what I was! But she was so darn cute with her pigtails, I couldn't just leaving her hanging.
Christian's doctor came to visit him yesterday and I had Christian lying on my bed. When he lies on my bed, he really relaxes rather than if he's just in his crib. The doctor remarked that he looked a lot better and a lot more relaxed than when he has previously seen him. I spoke to him about maybe doing continuous feeding over night so we can spread feedings out during the day. And, to my surprise, he was open to it! So we'll see how that works starting Monday. I also talked to him about the Passey Muir Valve (thanks for the suggestions ladies, now I have street cred ;) ) and he said he'd speak with the speech therapist to see if Christian was ready for that yet. I love receptiveness!!!
So in the last 24 hours Manny, the PT, and the doctor said Christian is looking and doing much better. Sometimes it's hard for me to see because I'm with him every waking minute (and I wouldn't have it any other way.) But it's nice to hear from others because I'm so proud of him. I literally put my blood, sweat, and tears into him (maybe not blood, replace blood with more tears). I'm so determined to give him strength so he can have the best environment to recover. Recovery will be long and hard but I want to make sure he has an atmosphere that promotes healing and makes it easier for this little boy who will have a difficult time. I have never felt as passionate about something as I do about my children. I could go on but I'll spare you. The point is that I only loosely understood the phrase, "be your child's best advocate," until now.
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5 comments:
Shauna, I admire you so much. I have known women going through incredibly difficult situations, like yourself, but I have never known anyone who is quite as strong and determined as you. I firmly believe that Christian is going to benefit enormously from this, we will all see! Thank you for being such an inspiration to all parents.
You are an awesome advocate for Christian (and Gabe, too, I'm sure). Keep up the great work (a labor of love no doubt). Sending lots of hugs for a great weekend and more little miracles for Christian. And, very happy the doctor was receptive! Progress, I say, progress! :)
I'm so glad that the Dr. was receptive to listening and asking about the PMV. Tracheostomy.com is a great resource for that stuff too. I haven't been in your shoes but can definitely say i too loosely understood being your child's best advocate. I do it all day everyday!
Shauna, you are such an awesome mum! I love seeing all the great pics of Christian, I don't have to look to hard to see the hawk' either :-) you can defin see it!
Have a great week ,
Becca, Jasper's mum
that is right, you are your child's advocate! Stay strong momma!
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