The endless feeding drama

After upper GIs, xrays, ( we went again the other day and all is fine) I have come to realize that Camden just can't tolerate his feeds. Yes, he has allergies too, and there may be some I havent recognized yet, but after a rotation diet he is still wretching. We are back on the pump and still using 60 ml syringes ( taking 20 min breaks in between each)but I am now feeding him over 45 minutes on an average. It is helping, a lot. He did have one bad episode today, but we found it was because he was laying on the bed flat and being tickled. BROTHERS! =0) Anyway, it is helping so that is what we have to do. I am not understanding how we worked for so long to get his feeds through faster, and not we are back to this?? I just knew as he got older things would get better. It worries me about his future with eating, especially when he is still not taking any calories by mouth. Trying not to get discouraged and just focusing on how well he is doing over all!

A cough has settled in his chest from the cold he got a week and a half ago, but the wheezing is leaving and he is doing ok. =0)

He is also finally gaining weight. I have been using different things, and substituting sunflower butter, honey, and garbanzo flour in his rotation diet and it is slowly bulking him up more.

Above is a pic from today...sorry about the quality. Mom's camera was on the wrong setting. ;p

Happy bday to my 14 yr old, Justin and my 6 yr old daughter, Micah!

*sniffles*

No one else, but Camden. He seems to be kicking it ok. Sleeping a bit more, and tonight he had a neb due to a little wheezing. That is the first one since last winter! Hopefully he will just get better fast, and it wont turn into anything. =0)

Tonight he said his third official word, "More" It is too precious and the lip formation he does with it has us laughing so hard. It is so neat to hear!!

ENT visit was fine. Ear tubes still in place and trach hole being left open for now.

We traveled to Jax yesterday to see his ped. I shared the food allergy issues, and we are going to rotate his diet to see ho that works for him and also to not create more allergies like I did with the soy. I am alternating hemp, rice, almond, and coconut milks ( with a lot of other things added to it). I havent tried coconut or almond yet. He did gain weight with the extra olive oil I have been putting in his food and made it to 23 pounds.

We found out that his precious surgeon, Dr. W is leaving. I was so upset to hear this. She is one of a kind and we will feel a great loss when she is gone. I cant begin to express the gratitude I have for everything she has done for Camden. God used her in a mighty way for our family, and we are so thankful. I go to see her on the 26th of this month and am hoping she has changed her mind. ;o) Well, you never know! =0)

Physically Camden is catching up. We are in a two story house now, and if we allow him, he will climb right up the stairs. I still have to look into getting speech over here now that I have moved, but have slacked in that area. He still doesnt take in any calories by mouth, but continues to lick things when in the mood. Still signing for communication too...

Camden has adjusted well to his new place. He still sleeps in our room and still uses the apnea monitor at night. He loves seeing his Nana and Papa on a regular basis too! We are really liking our new little town.