Thursday, September 23, 2010

Quick Update

Still busy packing, and now we have decided to move out this Saturday so Im not finding myself on the computer much. =0)

As for Camden we are still doing the hemp base diet. Wretching a little bit, but definately cut back a lot! I am thinking it is just a lot thicker and heavier on his stomach. He has gained a little bit too. Up to a whopping 22 pounds, same has his younger 10 mth old cousin! ;p He is not tolerating more than 8 ounces at a time. If I try to do just a little more, he gags.

We saw pulmonology today. Camden looks great and we dont have to go back for another 3-6 mths. She said just to call and try to get all my appointments together since Im driving almost 2 hrs now. She gave me another order to continue the apnea monitor and emergency oxygen to have on hand. I am so thankful for this. I can't imagine him sleeping through the night. I know those fears will slowly go away, but especially with his diaphragm already re herniating, I have my concerns for sure.

No more words, but is officially saying the "ba" sound. Still continues to sign as communication, and that is just fine with us as we wait for those words to come.

Still no eating, but licking more and wanting to taste everything, which is super hard now with the allergies to soy and milk.

We go see ENT tomorrow and I will try to post an update. If not, we will "see" our fellow bloggers in a week or two when we are settled. =0)

Saturday, September 11, 2010

Busy with moving...and a little update on my boy...

We have decided to move to Madison County, Fl. 2 hours away. Will will still drive here to Jacksonville for Camden's doctors, of course. Things have just happened so fast and easily and we will be moving Oct 1! Glad to be in the country and near my parents! Lots to do with medical supplies and such, but nothing compared to vent days, so no complaints.

PT came again and agrees that he is taking off. We are not going to bother to get another PT when we move, but just do an evaluation in 3 mths. No OT either, but of course we will need to find speech out there.

We believe SOY IS the issue. Has done soooo much better with rice, but has lacked all the extra calories/protein that was in the bright beg. formula so we are starting a new blended diet with flax, molasses, olive oil, wheat germ, and a few more yum yums. Good thing he cant taste it, huh? ;o) The base will be hemp milk...

He was in the 3rd % in weight and 31st in height at the nutritionists yesterday. Skinny thing! Hoping this new diet will fatten him up!

Will be busy and packing for the next few weeks, so until then...

MOST IMPORTANTLY...
My heart is heavy for the Agnew family, a fellow blogger that I have never met, but have been reading about their precious baby girl, Maggie. I started following her blog back when Camden was trached. She is extremely sick and they found out she has a mitochondrial disease a while back. Please keep her in your prayers....

Also all the families hurting from lost loved ones from 9-11....