Saturday, February 26, 2011

Back on the Roller Coaster

I feel like my posts go from great to bad, with no in between.. That's HCU for you! Kaden started his new formula in January, now that he is over 2, and we transitioned very slowly. He takes 90 gms of formula a day and we went in 5 gm increments every 3 days. He didn't notice the difference until the formula was about 75% new and 25% old. Now that he is on 100% of the new formula, he won't drink it! I'm lucky to get 5-8oz down him a day and he is suppose to take 16oz. Its been 3 weeks now and I can see the changes. His behavior has been horrible! He is back to hitting, biting,and screaming all the time. He stopped napping and just doesn't sleep well and, having 4-5 dirty diapers a day so we are now battling a diaper rash. Kaden's doctor says that increased levels doesn't have outward signs, but I see signs in Kaden. Every person with HCU responses differently to diet and treatment and I see changes in Kaden when he is off his diet or his levels are high.

I called his dietitian last week to see if we can try another formula. I have another brand I got as samples, but I need to know how much powder per ounce of water for his weight to make it. There is also an HCU gel product that can replace formula. Its like a jello mix they take 2-3 times a day and its only a few ounces, but it doesn't give the same calories and nutrition as the formula so we will have to see what the doctor says. Just waiting for a call back now.....

We did blood draw a few days ago and I'm expecting bad numbers, but we will have to see. He was a bit high last month and he was on his diet and doing really well. I think it may be time for some diet/medication changes since he is growing. Fingers crossed....some wine to relax...we will get through it and I will get Kaden back on track.

On a good note Kaden was so sweet during his blood draw. I hate going, I feel bad every time we go and wish I could do it for him. No baby should have to get poked every month, especially my baby! Anyway...They called his name and he followed the nurse back saying, "hi nurse." He climbed into the chair, and tried to wrap the rubber band tie around his arm. I got him on my lab and and he gave his arm to the nurse when she asked for it. He cried very little during the draw and stopped as soon as she was done. On his way out he told the nurse,"thanks, no protein." I could of just melted. He knew what he had to do, he knew they were testing his protein and he was so brave. I LOVE him!