Tuesday, December 14, 2010

A New Kid....

We went to see Dr Kays and let's just say he is amazing. It is so unbelievably wonderful to discuss Camden with a Dr who knows CDH and has dealt with 250 other CDH kids....

So there WAS something wrong....thankfully not a huge deal. =) He was being fed too much food at each feed. I have always worked with a nutritionist since we've been home but how were they to know? They definitely tried their best to help me with feeds. I never would have thought it was all due to the amount in each feed. He was already getting less than most kids his age. I have slowed his rate down to 2 hrs before and it still didn't help! Not only that, but back when he was getting less, he was still retching due to the milk allergy! So, Dr K cut his 5 feeds a day back to 4 a day shaving off around 50 mls each feed, then going back to an over night feed to make up for loss calories at 400 mls at a rate of 50, so over 8 hrs. Ew to all night feeds again. Yea to CAMDEN HAS NOT RETCHED ONCE since last Tuesday!! We are doing my blended diet for the day feeds, and back on soy formula at night. I was scared since he retched so bad with it but it could've been just from being over fed. So far he has done well with the formula. I am seeing a few hives here and there. Hardly any though, so I am hoping he continues to tolerate the soy formula and we go on retch free. (Potty training is looking further and further away with 400 mls given through the night....holy moly huge pee diapers in the morning. = S )

So, just in this week since he has felt better he has been babbling up a storm, tried around 25 grains of rice and 3 sketti noodles. =0) When he is sick he keeps that mouth so guarded, wants nothing around it, and hardly speaks. So hopefully we will see new things to come with Camden.

Gonna do an upper GI soon and xrays every 3 mths for this year. Dr K explained things to me so clearly and helped me feel more comfortable with some of the fears we had. Poor thing probably wasn't expecting to do counseling sessions.

It is so nice to see him up and running, testing me, telling me, "mo!", throwing fits, laughing out loud, trying to sing..... It has been a while and I have never seen him retch free for a whole week. Exciting!

Gainesville is a little closer and we are looking forward to Camden's new care. Very strange not going to Jax as much. We will always be so very grateful to Wolfsons Children Hospital and all the Drs that saved our baby's life! God opens the doors needed....

Wednesday, December 1, 2010

Good stuff =0)

Got an appointment with Dr Kays on Tuesday! That is the good stuff... =0)

Camden is doing better this week......except for feeding time. He is eating over an hour and a half each feed and retching bad and just wants to lay. He may sometimes get a break from the retching once/twice a day out of the five feeds, but he still is cranky and wants to be still during that time.
Had a little more energy the last few days and it was nice to see him up, smiling, and trying to talk. He doesnt get too much free time with feeds taking so long. Im trying to get the calories in, but every night I have been turning off the pump when he isnt quite finished. I cant stand watching him lay there and retch while he tries to go to sleep.