We are blessed, in our trials

After spending the day at the Children's Hospital, I left feeling inspired and grateful.  The many children there who are facing lifelong battles with their special medical needs, makes me realize that our struggle is minute in comparison to these other sweet little children.  It was a jolt of encouragement and empathy for the mothers who stood so strong in the storm.

They removed the sutures and we received 3 more boxes of supplies.  We have to run his feeds a different way now, and with these new supplies.  I feel so overwhelmed at times, becoming educated on all things involving my children.  I get nervous with each new task and I doubt my abilities.  In the end I am in complete understanding and can do it without even thinking.  But I am anxious with the first few attempts of any new home medical equipment.

Such an exciting milestone for us, he does not have to be "vented" the entire time!  Remember, "venting" is when the large syringe hangs above him; connected to the tube going into his g-tube/button and releasing any air.  Now, he attempts to take a bottle, if he finishes all 4 ounces then we wait about 10 minutes for quick digestion.  Then we hook the tube into the button to allow any air to escape.  This is how we burp our baby!  Make sense yet?  He will burp on his own in the future but usually 2 weeks after surgery, once everything has healed and the swelling has gone down. 

If he does not finish his bottle, or for night feeds (I don't wake him to eat but he has to have the calories) We put the formula into a bag with tubing and the tubing runs it through a food pump and the tube deposits the formula into the syringe, which then carries it to the stomach.  With that process we leave the tube attached on the syringe to allow for air to pass through.
We have to do wound care on his incisions and where the Mic-Key button is.

This is the g-tube/Mic-Key button capped off. 

 

 

 As of right now his eating is so "hit or miss".  Sometimes when I offer it to him you can tell he wants it, even though he hasn't quite learned how to do it.  He is averaging about 2oz of each 4oz feeding.  Sometimes he takes more sometimes he takes less.  It takes him a while and he has forgotten how to seal his mouth around the bottle.  It's most pitiful when he gets frustrated and we can see why.  He is happiest not eating, but that's not an option! :-)

 11lbs 7oz now and 24" long he will be 5 months in 6 days!











Strong Man is doing well and is definitely on the right path to recovery.  His home care nurse will still be coming everyday or every other day.  He will go to the Childrens Hospital once a week for now.  If he does not start learning how to suck on the bottle we will have to go more often.  I can see the improvement though.

AS FOR EMILY, we had an appointment yesterday with her ENT Dr. It was a follow up from having her adenoids out Jan 21, 2010.  He said that she is going to need her tonsils out.  We were told last year when they took out her adenoids that her tonsils very enlarged.  Weighing only 20lbs and 18 months old he was apprehensive to remove them because the side effects are more severe, the smaller the child is.  He said now they are almost touching and are obstrcuting her airway, causing all her sleep issues! She is on a round of antibiotics and in 10 days I have to call back to schedule her surgery.  Miss Emi is now 27lbs

I guess God knows I can handle all of this or he wouldn't have filled up my plate!  Our "break" is coming and I can't wait to sing of his praises!!!