One moment and one day at a time

So Lennon appears to be more awake these days :o) He is attempting to speak his wants and needs “Mommy lay in the bed with me” or “I am thirsty”. I think this is a YAY moment. On other hand, the fluid that was on the right is now on the left, and it is Ascites. So some information below that we have heard and dealt with. Definition Ascites is an abnormal accumulation of fluid in the abdomen. Description Rapidly developing (acute) ascites can occur as a complication of trauma, perforated ulcer, appendicitis, or inflammation of the colon or other tube-shaped organ (diverticulitis). This condition can also develop when intestinal fluids, bile, pancreatic juices, or bacteria invade or inflame the smooth, transparent membrane that lines…

So the ammonia went below 100…88 to be correct..and so Lennon is home from this visit. They did his MRI in the a.m. and I am curious to know what they can or cannot tell me. His future is undetermined but we’ll do the best we can. I think my frustrations are really to the point that we cannot control his ammonia and there is no rhyme or reason what may cause it to go up. While stress is one of them, I would love to provide a stress-free live but tht is unrealistic. I don’t know if I want him on additional medication to cope with his stress problems because I want to enjoy my son even with his quirks. I think this one…

I don’t know how many times this title will repeat or will be the contrast of things…but today is a good day…Lennon went to school and he was gentle and kind this morning. He was still tired and sore where his IV Port is located but certainly, he is up an running just like always. It is sometimes hard to fathom he is five years old because of his delays he is lacking some of the functionings of a child, as well as the ability to learn. It take about a year for him to learn that he is one year older and the age, and by that time is next birthday will have arrived. So if you ask him today, “how old are you”,…

So Lennon had his initial meeting with the transplant team. I am scared, worried but like the outcome even though it bares quite a few risks. Lennon has been doing ok but has not been sleeping well. He has been drinking and eating, so I don’t think that the ammonia is elevated in the “danger zone”. In addition, his attitude and behavior indicate that it is not over 100. We certainly need to watch him and do the things we know to do: Gatorade, MCT oil, sugary things etc. OK back to the transplant… Lennon will receive a whole Liver as opposed to a part of a living donor. The reason being is that since the Urea Cycle Disorder is Genetic, there is a pending…

Yes, Lennon did not like some foods – usually those high in protein. I was always left wondering why he wouldn’t eat chicken nuggets, fish sticks, mac & cheese. In addition, there are lots of veggies he stayed away from corn, peas, carrots, and other ones. He has always been big into starches (potato and rice) and no he does not eat spaghetti either. It seems as though he always knew about the food that would make him ill – run by instinct – perhaps even a certain smell? I don’t know but it is pretty amazing that he ultimately knew what he could or could not eat. I think a big part of him not eating right now is that his body is going…