A Mothers Perspective...

This is a post by Sarah, it is soo sweet and soo right on. I couldn't do this month in review any better... Thank you my love.

People often ask "How is Angel doing??" Whether it be someone who just learned about Angel and his life/transplant or someone who maybe hasn't seen us or heard from us in a while... its always interesting to answer.

"He is doing really well right now" tends to be my answer. But what does "really well" REALLY mean? Its all in the perspective, I guess. He is not in pain. He is not in liver failure. He is not dying. And he is really, really happy. That is well. But if you compare that to a "normal" child's life it is still far from "well". (Not that we are in the habit of comparing, of course!)

Angel is on 24 hours of drip feeds at 90cc an hour right now. He loses the 2 hours off a day because, at night, he is backing up and "venting" about 300cc. (At night his tummy just doesn't pass the formula through easily so we have a special bag that anything that's not moving can back up in to.) He is only getting about 15-30min a day unhooked. He is also still on 12 hours of IV fluids a night. Its just hydration that a newly transplanted bowel cannot absorb from his feeds/drinking. He is doing Occupational Therapy 2x a week and doing REALLY well (there's that phrase again!) and making strides and doing better eating. Of course, "good eating" for him is eating 1/4 a piece of bread - plain - in one sitting. :)

And we are still in what I call "quasi-isolation". We do not go anywhere that has large groups of people - especially children. If we have to go anywhere public he wears a mask. Any contact we have with others is "pre-screened" to the best of our ability to make sure they aren't sick or haven't been exposed recently to someone ill. It is an odd life to live. Its not completely debilitating but very restricting and... isolating. :) Angel's Neupogen injections really help keep his White Count up and his body able to fight off minor viruses and such... But the reality remains that if he gets sick the risk is MUCH higher that his body's immune system getting ramped up to fight the virus or whatever could cause it to then reject the organs.

All that to say, however... we are learning to love our new normal. We accept that this is our life and are doing our very best to make the best of it. To appreciate every joy and good thing that comes our way. We have more hope and optimism than we have in a very, very long time. Angel has had a LONG stretch of "doing really well" and we are ecstatic. As I rocked Haven in the middle of the night the other night I began to ponder... SHOULD we be a little more guarded? SHOULD we be reminding ourselves that there are still bumps that are inevitable? SHOULD we recognize that there is STILL only a 50% long term survival rate for this transplant??? I decided no. No. It is time to live. It is time to drink up all the goodness of these days.

A year ago I didn't know if Angel would make it to summer 2009. Today I bought him new swim trunks. Almost a year ago I cried as we made a little visit to his class the last day of school not knowing if he would ever go to school again. We are making plans for a vacation. We are talking about "when he gets his central line out and can swim ANY time he wants"... I am teary and choked up as I write this. Its totally time to just live in the moment. And it is SO SO good. Last night Angel was up at midnight going to the bathroom and I tucked him back in to bed. He wanted to snuggle (which is unusual... but happens more often when he DOESN'T want to do something - like go back to bed ;) ). We got into a conversation about transplant. I said "Angel... I'm glad that you had a transplant. I know it was hard. And I know sometimes it still is. But do you know that if you didn't have it you might not have been alive today?" He said "I know. Mama? You know what I think? I think that I have been dreaming. I think that since that night that you guys woke me up [referring to the night we got the call for transplant] that I've been dreaming all this time." Huh.

One of the things that Angel has been dealing with post-transplant is ingrown toenails. Ohhhhh they are the BAIN of his existence! We have been soaking them in vinegar and salt water for months... And he hates it so much. Finally we put him on antibiotics for it and it got a little better, but were still bad. So this week we went in to the Pediatrician's office to have BOTH big toes worked on. He had to have 2 numbing injections on each big toe (4 pokes) and it was very traumatic for him. (I guess a lot of adults say that the whole thing is VERY painful!) But once the numbing set in he was totally fine. And.... he has had NO pain since! Unbelievable. In fact, last night he said in his prayer "I am SO tankful dat dose tings [referring to toenails] are FINALLY gone!" He got to go to Target afterwards and pick out a well deserved prize. Can you guess what he picked? Superhero toys, of course! (Its either going to be that or video games!)


Thank you for still checking in on us... We will never stop being grateful for each of you who held us up by reading, keeping up, and supporting us through these times!

Hudson quote this week: "Mama, when I love someone... my heart does fireworks" (followed by exploding noises)