A boy named Lennon

welcome

Lennon was born with a rare metabolic genetic disorder called Urea cycle disorder - CPS Deficiency. He was diagnosed at the age of 4. In November 2008 he underwent not one but two liver transplants in order to save his life and could potentially face another transplant. This is his story.

Yeah we all shine on, like the moon, and the stars, and the sun. John Lennon

This is what I ask


to keep the family who will loose their own loved one, who will make the sacrifice to donate the organs so another shall live. Keep them in our hearts, send them our love and positive thoughts and love them for their human kindness.

Pray, chant or do whatever it is you do to keep the family filled with warmth and strength through their difficult time.

We will not know who they are but all families or individuals who participate in organ donation need to be lifted into our hearts... without them lives could not be saved.

Thank you!

Looking for some innner strength


A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. -- Christopher Reeve

 Some days I don't know how I manage. Today was one of those days. What I often don't write about is the cognitive disability that has impacted Lennon's life...his impulsiveness, inability to focus and/or listen, inability to assess safety and risky situation and the lack of maturity for a 7 year old. 

When you are with Lennon you have to be "on" all the time, especially when he is awake because you just don't know what he may do next. I foster/encourage his independence but that comes at a price when he can't assess situations accurately and they become unsafe. Lennon LOVES freezer pops, he LOVES to get them himself. He will even come to me with freezer pop in one hand and ..ugh.. scissors in the other hand. There are times he "runs" because he becomes TOO excited. There are times he climbs on the chair, because he is MR. INDEPENDENT. It is hard keeping him safe and encouraging him to do things for himself. It is hard not to sound like Marlin ~ Nemo's dad who says: You think you can do these thinks, but you just can't. How many times that sentence goes through my head I won't mention, but its there. And then I push it aside, because he can do these things, because I encourage him to do these things. 

Last night he unhooked his feeding tube, aside the fact I know need to clean formula stains, Lennon with his action indicated he is tired of the feeding tube. I know this, he tells me all the time he wants to start eating and I gently remind him that until he does he will have to have the tube. Its a struggle because I can see he wants to be "normal" like the other kids in school while at the same time having to be restricted from foods (protein) and that there isn't enough food that I could offer that would satisfy him.. let alone that he would try them.

Tonight he spit one of his pills out ~ time to crush them and give them through the tube! 

Its not always like this. Lennon loves to share his love... he loves to show attention (especially to me) by sitting in the lab or laying on the couch with someone. But then he struggles with transition and understanding and (unintentionally) disrespecting ... Lennon wants what he wants because he focuses on one thing so much that its hard for him to transition to something else.. and then I remember the affection he's giving me... the unconditional love that he has and so freely shares with everyone. 

When I remember his affection - every time he acts out, has the inability to focus or transition - I embrace it. I disregard how stressful my moment, my minute or may day has been. Because in the end he is simply living in this world the best way he knows how - unconditionally. And yet it doesn't take away the stress and the frustration and the tiredness I feel by the time the day is over, knowing I will have to do it all over again tomorrow. And again, I look forward to every morning, because I know that during the day we will spend special loving moments together - hugging, cuddling on the couch, even if only for a minute. 

I was looking for something tonight for inner strength and I came across the quote from Christopher Reeve. It lifted me and its own right made me acknowledge myself and the person I am in Lennon's life. 

Good Night!

 

Bubble Echo


Today Lennon had a bubble echo done because his oxygen has been pretty low the last time we were at the hospital.. it was like 81... today it was 91... so we are now aware that his o2 changes from one minute to the next.

The results from the bubble echo indicate that the capillaries cannot do what they need to do. They call this AVM ~ Arterio-Venous Malformation ~ an abnormal collection of blood vessels. AVM can be thought of as a "Short Circuit" where the blood does not go to the tissues but is pumped through the shunt and back to the heart without ever giving nutrients to the tissues.  The link talks about AVM but more brain related not so much about the lung, so if you happen to read it, I don't think that the brain stuff is true.. but could correlate to the lung? Researching I found this : PAVM is an abnormal communication between the pulmonary artery and the pulmonary vein.

Not so good but I think something everyone thought this would be the case. The bubbles went into his heart within 3 heart beats and according to the doctor it should take much longer than that if at all. One side of the heart was white and the next second so was the other side.

I called Pittsburgh to find out if this will change his status on the transplant list. First this was not the test Pittsburgh wanted..they are more interested in a pulmonary scan of sorts but are deciding whether this is acceptable or not. If they still want to scan, Lennon and I will be traveling to Pittsburgh again next week. If it is acceptable, we continue to wait.

According to the coordinator in Pittsburgh, Lennon will move to the top of the list next week.

**Addendum** Lennon will have a pulmonary infusion scan with some sedation to keep him calm/quiet and ultimately still through the process.