Wednesday, September 29, 2010


I am totally overwhelmed by the people who love my son.  And I am so amazed by the people who take time out of their own day to comment, send e-mails, or send cards.  I really try hard to respond to everyone-  and sometimes it takes me a little while (I usually find a time once a week or so to sit down and write everyone back) so if I haven't sent you a thank-you, please be patient with me, but more importantly- please know that every word and every gift has touched my heart in a way that I could never express to any of you.  And if you've done something like that for us- you know who you are... and I THANK YOU.  Everyone wonders how I can ever be positive and how I can see the good from this horrible situation, well that is exactly why.  I can see the lives that Tripp has touched and I see the GOOD come out of SO many kind, generous people.  What a blessing this blog has been in my life- there are people across the world whom I've never "met" but who LOVE my son.  
"No man hath seen God at any time.  If we love one another, God dwelleth in us, and his love is perfected in us" 
1 John 4:12 

I really wish I could say that Tripp is doing so much better.  But he's just not.  He's definitely been smiling a little more and playing a little more.  But he is still just not the same baby he was 3 weeks ago.  Every now and then he will have a few good moments and I think he might be shaking off whatever this is- and then he's back to throwing himself back and lifting those legs and acting like he's in pain.  I know a lot of it has to do with his eye because it's horrible right now (oh, I cancelled Tuesday's eye appointment because he woke up and it looked a lot better, and I knew it would be a wasted trip because they weren't going to believe me) but I just know something else is going on... I just don't know what.  His appointments are rescheduled for tomorrow because of course, Tuesday evening his eye looked bad again.  So tomorrow he has a dentist appointment at 12, and eye appointment at 3:00, and somewhere in between or before the day is over, we have to squeeze in blood work at the pediatric clinic and then shots at his pediatrician's office.  Phew.  It's going to be a long day... and a tough day for little man.  He has to get his flu shot and then all of his 16 month shots that he's been behind on.  And he still has a bruise the size of a quarter from the Rocephin shot 3 weeks ago.  Oh- and tomorrow is bath day. Grrrrrr... He will be getting his Tylenol with Codeine every 6 hours on the dot tomorrow.  It seems like the only time he's able to function and be happy lately is when he's on the codeine.  And I know that's not good, and it's certainly not what I want- but like Dr. Defusco said, "If it's making him feel that much better, then he's obviously in a lot of pain and he needs it."  I've only been giving it to him once a day... but about 30 minutes after he gets it, he's like a new baby.  That last about an hour, then he's in la-la land.  

So I'm just not sure what's going on with him lately.  And we've done almost all the tests we can- OH yeah- C-Diff was NEGATIVE.  Go figure.  I'm clueless as to what's going on.  And just saying, "Well I hope he gets better soon"- just isn't cutting it anymore.  

I talked to Daylon's mom, Jennifer, about 2 nights ago for about 45 minutes.  Boy, is she a sweetheart... and what amazing parents she and her husband, Brian must be to be going through EB and the transplant  with 4 other children.  She answered a lot of questions and gave me a lot of information about the Bone Marrow Transplant.  It's not something that will be happening tomorrow- don't worry :)  Just something that's been running through my mind lately.  I want to research and be a lot more knowledgeable about it than I am now- just in case it's something we decide to take on.  Honestly, I don't even know if Tripp would be healthy enough to take it on right now.  These little ones have to be pretty strong before the transplant because it takes a really hard hit at them.  But I can't help and think if it would be the right path for us... honestly, it's been consuming my almost every thought.  

Well, the king is asleep so I guess I should be too.  Once again, I thank each and every one of you- my faithful blog readers... you truly, truly are what keeps me "keepin' on."  And I'm forever grateful for that.  

The smile I kept getting while rocking this morning. 
Melts my heart.


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