New Manual Chair

A little while ago Rikki heard a knock at the door.  Fed ex was delievering Kody's new manual wheelchair a day earlier than expected.  \ First thing he said was "Wow these breaks are awesome!!" 

    Can you tell how much he loves his picture taken?  We took a walk which lead to a park trip.  Though his back is achy he insisted on taking a few trips down the slide.  This picture does not show it but we ended up having to use his chest strap to assist him in sitting up.  He made mention this morning that he wants to get a new manual chair.  Since insurance does not cover its replacement we will save up until we can purchase a suitable one.

Mid December Seriously?

Vacation has officially started for Kody from class.  Well it will after his teacher comes in about a half an hour to pick up last minute work.  I called St Josephs Childrens Hospital to schedule his Orthopedic doctors appointment.  This appointment will occur 1/2/2012 @ 9am.  This is something that will give us the status on his scoliosis as well as let us know if there is any deterioration of the spinal column due to the severity of the scoliosis.  At this point due to the cardiac advancement surgery for the scoliosis is not an option. 

He seems to be content with how things are with him which somehow puts me at ease.  I am not sure if that makes sense but it does make sense to us.  My thoughts are so long as he is happy when I am happy. 

I will update further when we have more information from the doctors appointment.

((HUGS))

Back to Manual for The Weekend

Kody is back to his manual chair for the weekend.  The mobility specialist came to get it to prep for his appointment on Monday with the Physical Therapist who ordered the chair to begin with.  He keeps asking if we can start a tradition to open one gift on Christmas Eve ..... uhh nope not happening.  He seems to be doing okay and is excited that he doesn't have school for the next couple of weeks because of Holiday vacation. 

Cardiology Visit

We had a visit with the cardiologist at St Josephs this morning at 9:30am.  The routine test were done on him.  He is all of 72.6 lbs and about 4ft8in.  The doctor didn't say much about the EKG.  The echo that was done today shows he has had some changes but nothing hugely significant.  The thickening in the muscle has increased but the mitral valve isn't regurgitating anymore that it already was.  Of course he advised we use the Lasix only when necessary because it could cause a lack of fluid in the system making it more taxing on the heart then things already are.  He talked about doing a halter monitor on him during the next visit in 6 months.  Also said that we may want to discuss medications again on the next visit.  But he understands my reasoning for steering away from medication that could do more harm then good since the heart of a FRDA person is different.  


We will deal with things as they come. 

Upcoming Things

This week coming on Tuesday Kody sees the cardiologist at St Josephs.  It's a little overdue for his check up and so we are taking care of that before the end of the year.  This time around he'll have an EKG and an echocardiogram done which will give a clear picture of the status of his heart.  He loves his new electric chair .. with that there are a few loose ends to tie up.  So the following week we will take him to the hospital so they can do the once over and make sure his chair is working out well for him.  He has had a few bumps or so but all in all it seems to be working out just fine for him.  

He is taking the Lasix as needed now which isn't very often so that's a good thing.  I will update everything after his cardiology visit.  

((HUGS)) to the readers