Monday, September 30, 2013

Same Old Butterflies...

The date is set for Camden's trach hole closure. Oct 30th at WCH with Dr Maddern. He has had a nice, hospital free, long summer but we are ready to get this done. Every time surgery is officially on the calendar, the random butterflies start then get stronger until the day of surgery. This is a minor surgery in comparison to what little man has been through, but it is still hard to know he has to go under again. He will go to the PICU to be monitored, then to a room. 1 night stay (oh thank God how I dread when we have to stay longer!) then home we will go. He will have to have little drain tubes for a few days as well, so we may have a couple more trips to Jax. I know he will fly through it. There are a lot of emotions for me when I think about this surgery. It feels as though I was just in a room with him on a ventilator wondering if he would ever breathe on his own. Here we are, almost 5 years later, and he is getting his trach hole closed. He did it. He breathed on his own and now that part of his journey is over. Still takes my breath away sometimes. We are so very blessed. He sure is going to look funny with out that little hole in his neck!

Tuesday, August 27, 2013

Doing well!

I was having concerns about Camden maybe reherniating so I took him to gville today for an X-ray. We were almost due to see Dr Kay's anyhow. X-ray was clear, I was wrong, very thankful! He has lost two pounds (down to 29) since gtube was taken out, so I am going to try to work harder on his diet. Tonight he ate a whole "abacoda." ;-)  He loves avocados!

We will go see ENT towards the end if September to schedule Trach closure. I didn't want him to have restrictions with swimming through the summer, so I have put it off. We did teach him to swim, but he is far from a strong swimmer, but we have had a lot of practice! With time he'll get there!

I can't believe my baby is a little over 4.5! Time seems to go by way too fast. Trying to enjoy him as much as possible without worry. So hard not to think about the what ifs at times, but I'm doing better. ;-)
thanks for caring for my boy. <3 p="">

Wednesday, May 29, 2013

A break.

It has been just that. =) A break for my little man. He has done amazing in the eating departnment. No gaining, but maintaining. Tall and exremely skinny. ;oP We are putting off trach closure. After his last surgery on his private area, I decided we were going to stay hospital free as long as possible! He has done well since then. He did get a tummy virus and had a few gagging episodes. Ever since then he has had a slight cough which I think is related to reflux so I am going to watch him and maybe think about getting him back on the reflux meds. Other than that he is well and I am thankful and just enjoy this blessing daily. I never take him for granted. Thank you, Lord....
Here is a recent picture with his new puppy, Scout!