This morning started out just fine for the first 15 minutes. I got Lizzy up and got her ready for her bath. She was in the tub and I was washing her hair like every morning and I said "We need to hurry up because we have to leave in a few hours." Lizzy asks me "where?" I said "To see Tony at the Plattners to get your NEW TSLO and AFOs. She said "I want to stay home and play my nintendo DS play with my dolls and see papa." I said "Lizzy you get to pick out your new design. Are you going to pick leopard again or what kind are you picking out this time(Hoping to get her excited she is going to get new ones)" well she had a total "melt down" She said "I am not going anywhere I am staying home and flipping herself side to side in the tub. She is not your typical Type 1 child with SMA. Nothing about Lizzy is typical. Christen came in and said "what's going on?" and Lizzy tells her "yes she is going" and Lizzy quit flipping herself side to side( worried she was going to hit her head). Then she flipped on her side again and I saw her DRINK BATH WATER!!!!! I MEAN ACTUALLY GULP IT!! EWWWWWWWW Yuck!! OMG..... she knows better than that. I hurried her out of the tub, suctioned her and coughed her to make sure she has not aspirate any bath water. The little stinker..... I can not believe she did this. She has not done this since she was 3 years old. She knows what happens when she does that. We have to do extra treatments for three days to make sure everything is out and no aspiration Pneumonia. After the intitial drama was over she said" I am okay can I got potty on my potty chair? "I said "Lizzy I need to cough you a few more times". Well, meltdown #2 till I got her in her potty chair. While on her potty chair she said "I told you I didnt want to go any where today and it was an accident I drank the bath water. " Oh my what a morning. So, please pray she does not get sick from this!!
Then, we get a call from Jennifer (Our good friend from N.Carolina)with a little guy
Jacob that is 2 years old has RSV !! Oh my gosh!! What else is going to happen? He is in the hospital and intubated.
Well, more did happen.... Hunter Gerdes a child with cancer we have been watching his web-site and got an update that he had passed. My heart just sank. What a brave little guy. The whole community was involved with his story. My grand-kids Robbie and Rachael went to school in Saunemin,IL with him. Lizzy and I would say prayers for him. Jesus called him home and he earned his wings. Here is the update from his web-site below. Fly High Hunter fly free of disease so many people will remember you for how much you fought and how brave you were.
The update:
"This is with a heavy heart I write this Hunter earned his "wings "at 11:05am. He went very peacefully with everyone surround him. We are very sad Hunter has left us here on earth but we know that he is in a better place and he isnt in pain anymore. Please continue to pray for us and our family. Thank You all so much for everything you have done for our family. There just arent words to express how we feel about each one of you!! "
His picture is above.
http://www.caringbridge.org/visit/huntergerdes
We believe in miracles.
www.our-sma-angels.com/elizabeth
2 comments:
I hope you can get to bed early and that tomorrow will be a better day. Whenever Drew has a day like that, I tell myself that I'm glad he has spunk!
So sorry to hear about the little boy who earned his wings. I am so used to worrying about all the SMA children that I sometimes forget about all the children fighting other diseases and conditions.
Goodness gracious! Sounds like my Kyle. He is in a terrible phase right now and I'm praying he gets over fast! Praying she is okay.
Post a Comment