Saturday, April 16, 2011

Progress 4 years Later

I used a talker today to help me communicate better. I hit a button with my elbow to let my mom know what I wanted. It was really cool. I still need a lot of practice, but I'll get there.

On Wednesday I sat for 30 minutes.

On Friday I crawled.


Thursday, April 14, 2011

What's Next

Doctors Appt., Doctors Appt., Doctors Appt.!

January and February are usually the families doctor appt months. The only doctor appt. that makes me nervous is Joey's Orthopedic appt. This is the apptt. were they check his hips for dislocation and his back for scoliosis. Well luck was on our side again and his hips are fine and NO scoliosis. Whoo Hoo! However, Joey did have to have botox in his calfs and hamstrings again to help the stretching of these muscles. He was serial casted for 4 weeks. He was also sized for new braces. He just got his other braces last June. That is how much his feet have grown. I was very proud of my husband, he took Joey to this appt. and dealt with the removal of his casts and the sizing of his new braces. He did a great job with Joey that I think I might send him on more dr. appts. Hee Hee Hee NOT!

Ok to slightly change the subject.......................or actually making a long story of my point in this blog..........................

Two years ago Joey's feeding tube was removed. He was eating great and continues to eat great as of today. He was drinking so so, not great but was getting enough. Over the last 6-8 months I have noticed that his drinking has gotten worse. He seems to choke or drown himself (ironic UH!) when drinking. Sometimes you can hear him wheezing when drinking. SO, I made ANOTHER dr. appt. Off to the Gastro doctor we went. I called the dr. requesting that we do a modified swallow study and of course he wanted me to bring Joey into his offices to evaluate him. AND what did he say when I got in there, "So I here you want to do a swallow study? Well lets do a swallow study", so why did I have to spend my time and money to see the doctor when he was just going to call for the swallow study anyways. I know why, but it's still frustrating. Well I am very nervous about this study. If it shows he is aspirating then the feeding tube will have to go back in. I am hoping this is not the case. I plan on doing Vital Stim all summer to help his swallowing. I haven't even made the appt. yet and I already am very nervous with butterflies in my stomach.

Good news did come out of this appt. though. Joey has gained 3lbs and weighs 40lbs now and has grown 4 inches since summer. Nice Joey, thats why my back and knees hurt. Thanks! So with this said, obviously he is getting enough nutrition without the feeding tube.

We also have another appt. this weekend, but not with a doctor. This appt. is with a therapy clinic to get Joey an AAC device (communication device). I am very excited about this appt. This can make a HUGE difference in the way Joey lives his life.

In a couple of weeks we are heading to Arizona for ABM therapy and a little vacation. We are very excited to do this again and pray for some awesome results.

Well that is the going ons here with Joey. Please keep us in your thoughts and prayers that his swallow study goes the right way and that we see changes with the ABM therapy and that we find the right AAC device.