Our ups and downs

Our ups and downs

Yesterday went well but today is a different story. Lennon woke up not wanting to eat breakfast, and I said alright, well at least you can drink some of your formulae… HA! Yea right! He or his body decided that it wanted to reject it, and puked it all up (twice). Normally this is an indicator that he is not well, but it doesn’t appear that his ammonia levels are elevated. He seemed to be in a decent mood, more mellow than I am used to, but certainly in a good mood. But it gives us a good cause to worry about it nonetheless. Ultimately I think if he continues on this path, we will not have a choice but to go ahead with the…

Information comes with repetition

Information comes with repetition

So we once again spend the weekend in the hospital, yes I know he just came home Tuesday but we seemed to have learned something in the process. Due to the low protein diet that L is on, he does not get enough calories and glucose in his diet. Even though he is allowed added junk food as opposed to my other children. However, it isn’t quite enough. So we now have an RX for a special oil to add to his diet and more formula to add more calories. It is my thinking that he needs to come of the Adderal and be placed on a different type of medication to increase his appetite because he doesn’t want to eat half the time. Oh…

A good day

A good day

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”,…

Frustrations

Frustrations

So yesterday, we took Lennon to the ER because he was acting funny..kind of lethargic, whiney..some abnormal behavior and so forth..and sure enough his ammonia levels were 276..gees…well so they admitted him, placed him on lipids and glucose and voila this morning his levels were 125 and this afternoon well enough to go home..this makes 8 visits so far this year…and very frustrating because it seems like no matter what we do at home..controlling his diet, making sure he gets his medications and giving him the things he needs more of such as fat (calories) and sugar, it doesn’t do us any good. I know there are times that he does well for a while..in the last year it lasted 6 months…but here recently its…

August 2007

August 2007

It was a good thing that in Jan. 07 we have moved to a new area. Lennon would be ill a few more times…with the vomiting and being extremely lethargic.. In August it came to the point that Lennon was almost not responding, and we took him to the ER. They did the usual, hook im to an IV and took down some notes of what we described..they took blood and gave him a physical. The peditrician noted some differences in the amino acids and was concerned enough to have him admitted for an overnight stay. They brought him food which he didn’t keep down..and so the journey began in the discovery of what is wrong with Lennon. The next day due to his normal…

So it begins

So it begins

[et_pb_section admin_label=”section”] [et_pb_row admin_label=”row”] [et_pb_column type=”4_4″][et_pb_text admin_label=”Text”] Lennon was born in 2003. The pregnancy was good, no trauma no trouble..until the end where he had to be induced. Perfect angel, little baby boy. All was well, or so we thought. We went home and started the new routine. Having had children already, it was no big deal for me. But somehow (in my gut) things were different. L couldn’t be consoled, nothing would satisfy him and he constantly had a runny nose and he would just scream for weeks on end. I’d call the doc and nothing was “wrong”. Lennon grew and went through the stages of being ill..symptomsptons but not having the flu.. he’d vomit, he’d be lethargic, hyper, not sleeping (or just a…