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 through this major adjustment. It’s a new him, and perhaps new feeling about self (physically and mentally?). If we think about what the ammonia has done before i.e. drive him crazy, make him irritable etc. the calmness might be kind of weird to him?

About the warm/cold feeling…I have ready somewhere that individuals with UCD will be cooler than normal as the liver is not able to function fully as there are enzymes missing. So my guess is now that he has a full-functioning liver and the enzymes have been replaced (?) he now has a normal body temp. For me that was just the neatest thing!!!

As far as for the water – the big issue was that he had been so full of fluid previously and they didn’t want him to “swell” again. In addition, too much water will lower your sodium (?), well this is the reason I was given. He now is drinking Breeze – similar to Kool-Aid just with nutritional elements.

Well, and so I am ending this with a positive note. Two of the draining tubes have been removed today and he was also been moved out of the PICU. He will require two shots a day for clodding issues, as well as his regular meds for the transplant (steroids, anti-rejection etc). So who knows by next week this time we truly could be home. Well, honestly all they have to do now is get his dosage correct and remove one more draining tube. Home for Christmas?!?!?!?!

Thanks for reading my blog!

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  1. So glad to hear the good news! Well worth the effort tonight I exerted trying to find your blog. I know that I have it somewhere, but now that I found it again, around a gigantic detour, I’ll bookmark it and whatever else so that I won’t have to jump through hoops next time.Wow, home for Christmas! I certainly hope that will happen…. Debbie

  2. Thanks so much for answering the questions. I am so glad to hear the Lennon moved out of PICU, that will be so nice for everyone with less visiting restrictions and more flexibilty in a regular room. His little body sure has a lot of adjustment to make … I can’t imagine what it would be like for a body to have struggled so hard for so long and suddenly be “normal” again and not have to work extra hard all the time. Technology is so wonderful these days and we hope that it will continue to be to your advantage and you will continue on this upward road … sure hope that you’ll be able to be home soon. What a blessing it will be to have time together as a family again!!Hang in there, we think of you often

  3. Sweet Lennon is very lucky to have a mom like you. I cna’t imagine what both of you have been through, but it looks as though he has turned an important corner. I have my fingers crossed that he is home for Christmas. Best, Kim

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