Mikella is a little girl with MWS that lives in New Zeland! I just came across her page today when on FB looking in my Mowat-Wilson group. I can't tell you what this did to my heart. You are going to have to experience it for yourself.
Go to: https://sites.google.com/site/mikellamws/Home
On the left you will see
A. Mikella in Action.
Watch the videos and experience the Hope that Mikella gave me today!
Love you!
Wednesday, January 23, 2013
Thursday, January 3, 2013
Happy New Year
Good Morning Everyone! I know it has been a while since my last post but we have been soaking up the time we have had with the kids! I hope you all had a blessed Christmas and a great start to the new year!
Currently, things are going well. Sophie is doing amazingly well. She is wanting to stand all of the time, do flips in the air with her dad, and attempt to get in to 4 point on her own. When I say attempt, it means she likes to get on her knees and rock. She doesn't want to use her hands or arms or else she would be crawling by now.
Sophie also goes to school now. She attends Toddler Group every Tuesday and Thursday. There she is learning to use some sign language, drink from a cup, and to hold on to food herself and eat it. Sophie is also getting therapy still when she is there. Luckily, it is only 1 hour because that is all Sophie is really willing to give. (The picture below wouldn't rotate for me but it is her locker!)
We also moved Shane to Madison schools after Thanksgiving break. Shane was having difficulties behaving at Adrian as well as difficulties with his grades. We kept giving him chances to make the changes needed and he just didn't. From the kitchen window and back deck of our house, we can see Madison school. Shane is able just to walk to school daily. We are still having some issues, but then again, Shane is 12! I expect that it will get worse before it gets better. I do have to say, that I couldn't have hand picked a better big brother for Sophie, he honestly is the BEST!
Sophie has a heart doctor appointment next month and from there, we will go every 6 months or so! I will take it! Sophie doesn't have to see her Hirschsprung's doctor at all unless there is a problem! PTL!! As far as her eyes, well, that is a work in progress. I know that her sight is improving every day, and that is all we can ask for at this point in time. We notice things like Sophie opening her mouth when you put an empty spoon up to her mouth like you are going to feed her. I love that she knows what it is and that she has to open her mouth. I know it is a mean trick, but it warms my heart to see her do it. She is also tracking more. Shane will work with her a lot on this and he becomes so excited to see her follow an object he is holding. Her seizures are under control right now. She still take Topamax twice a day for it. We see the neurologist this month sometime (maybe I should check that out) and he didn't need an EEG with it! That makes me happy!
As a family we are looking forward to 2013. 2012 had some ups and a lot of downs for us. Starting the new year we feel like we will have more ups this year and we can't wait. We are in need of them!
Currently, things are going well. Sophie is doing amazingly well. She is wanting to stand all of the time, do flips in the air with her dad, and attempt to get in to 4 point on her own. When I say attempt, it means she likes to get on her knees and rock. She doesn't want to use her hands or arms or else she would be crawling by now.
Sophie also goes to school now. She attends Toddler Group every Tuesday and Thursday. There she is learning to use some sign language, drink from a cup, and to hold on to food herself and eat it. Sophie is also getting therapy still when she is there. Luckily, it is only 1 hour because that is all Sophie is really willing to give. (The picture below wouldn't rotate for me but it is her locker!)
We also moved Shane to Madison schools after Thanksgiving break. Shane was having difficulties behaving at Adrian as well as difficulties with his grades. We kept giving him chances to make the changes needed and he just didn't. From the kitchen window and back deck of our house, we can see Madison school. Shane is able just to walk to school daily. We are still having some issues, but then again, Shane is 12! I expect that it will get worse before it gets better. I do have to say, that I couldn't have hand picked a better big brother for Sophie, he honestly is the BEST!
.JPG) |
| Shane brushing Sophie's teeth! All 6 of them! |
Sophie has a heart doctor appointment next month and from there, we will go every 6 months or so! I will take it! Sophie doesn't have to see her Hirschsprung's doctor at all unless there is a problem! PTL!! As far as her eyes, well, that is a work in progress. I know that her sight is improving every day, and that is all we can ask for at this point in time. We notice things like Sophie opening her mouth when you put an empty spoon up to her mouth like you are going to feed her. I love that she knows what it is and that she has to open her mouth. I know it is a mean trick, but it warms my heart to see her do it. She is also tracking more. Shane will work with her a lot on this and he becomes so excited to see her follow an object he is holding. Her seizures are under control right now. She still take Topamax twice a day for it. We see the neurologist this month sometime (maybe I should check that out) and he didn't need an EEG with it! That makes me happy!
As a family we are looking forward to 2013. 2012 had some ups and a lot of downs for us. Starting the new year we feel like we will have more ups this year and we can't wait. We are in need of them!
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