Sunday, January 16, 2011

A Little Better is STILL Better!!!

Well, I have to begin by saying that I am truly blessed to have an online community of support!! I got an overwhelming response to a cry for help when I was in need of advice about Liam's feet! I belong to a support network called EBfriends, and the amount of ideas, treatments and well wishes I received brought me to tears! I felt so emotional towards every person that took the time to write out, often lengthy, what to try for Liam. It really made me feel connected and supported! Thank you to everyone who offered me their stories in my time of need!!

Liam's feet are doing..(sometimes I don't even wanna say it...) better. EB seems to know when I think I have it under control and it enjoys making me regret my enthusiasm towards my current treatments. I'm thinking of coming up with a code word around my house so that I don't have to say it aloud! But, his feet really do seem to be getting a little better. He doesn't seem to be in pain anymore with them. We have made it through quite a few bandage changes without him screaming and crying real tears. He actually has been letting me do it all by myself. Usually we needed at least one other person to hold his legs down while I lanced blisters and loosened scabs. This morning he was smiling at me!! Its nice to talk to him while I do his fingers and toes instead of intently rush through the process so I don't have to hurt him and make him scream. It has really relieved a lot of stress for me, I haven't cried afterwards in a few days. I like to think he is no longer in any pain...he doesn't act like he is. This picture is a picture of him passed out during one of our sessions!! Whatcha think 'bout that?!?!?! He is off all of his meds, too! Just the Pulmacort for his tracheomalacia, which I have only been having to give him once a day. I remember when I was having such problems with him, everyday it was something else. I felt like he was never going to get better...but he did. He is doing so well. I am so proud of him everyday! He is shaping up to be such a sweetie, too. He sure does like to be held, especially walked around, he LOVES that. Sometimes he won't let me sit...I don't love that so much...but whatever he likes, I am down for!! 

I have also discovered that he can use a pacifier if I dole it out to him in incremental doses. It really soothes him, I'm so glad that he is able to use it. When I found out that Liam had EB, I thought that he was really going to suffer. Although I also have EB, I don't remember being a developing little baby. All I knew was the stories my parents told me about how difficult it was when I was a baby. Not really because of the EB, but because of the adjustments that had to be made. I had special clothing, I was fed from a bulb syringe, I got infections, I needed a lot of was, challenging. I had hoped the whole pregnancy that he would be EB free because I wanted him to just have a normal childhood, without all the stipulations and alterations. It has been to my pleasant surprise that he is really having a VERY normal infancy! He drinks out of a bottle, it is a special bottle, but it is a bottle. He wears normal clothes, they just have to be extra soft, but c'mon, who wants to wear uncomfortable clothing anyhow? He does get daily (pretty much) baths, but I like a clean baby.  He did get an infection, but the doctor was quick to write the appropriate script. It has been challenging. Not because I have to pop blisters though, because we have went through so much else. I am happy all I have to do is fingers and toes. His hemangioma could happen to any baby, it has nothing to do with EB. So, as much as EB is a pain in the a@#, it isn't making him any different than any other baby. I am hoping that as he grows up he will feel as normal as we treat him. I want him to believe he can succeed in any and every thing he does. EB didn't stop me, it sure ain't gonna stop him!!!

I just love him so much. He really has made such an impact on Scott and I. I think we are softer people because of him. (My best friend laughed at me the other day because I was listening to pop music on the, I think that my softening might have went too far!) I sing Yo Gabba Gabba and make the stupidest faces and strangest sounds all day long, just to get a smile, and when I do, my world is brightened. I look forward to seeing his face the second I wake up...I live for his little touches and snuggles. Its so beautiful to see the relationship developing between Scott and Liam...he loves that little boy so much. It is such a life altering experience to have a child. It's so rewarding when they melt your heart, which may I add, is quite often! Liam being a special needs child, I feel even more bonded. I feel like when he looks up at me, we are talking soul to soul. He says, "I love you, Mommy" he says, "I need you, Mommy" he says, "Mommy, you are my very best friend". I hear him even though he doesn't even squeak. He has the softest, calmest, most sincere stare. I feel his love, and that my friends, is like no other!


  1. Awwww. I have read every one of your blogs up to this point, didn't know about this sooner. But it's touching to read. I remember back when ME was little, I felt so bad for her and everything was so hard. But you'll get through it and look back and be amazed at everything you've conquered. He'll be and is such a strong little boy and inspiration. And you are and will be too. Hang in there.
    And isn't the internet great.... to be able to find people in the same situation and get support, because many people can sympathize but not everyone can empathize. It's just a blessing. I'm glad you have that.

  2. Hi Melissa: I just found your blog and I am so happy that you have one. This way I can find out how that precious son of yours is doing.
    I am so glad that his little feet are doing so much better. I too was blown away from the responses you got on EB friends. I just love that web site. Everyone is so so helpful and caring.
    Take care Melissa and give that precious son of yours a gentle hug and kiss for me. Love and hugs Leah's Nana