Friday, January 28, 2011

Sooooooooo Big!!!

Well, it's been a bit since I updated this blog...I gotta get more routine with this. Its certainly not that I don't want to...I want to have an archive to look back on, but sometimes life just gets so crazy! We had our 3 month well baby check up today! Liam is doing so well! He is 14.14lbs, 26 and 1/4 inches long! He's wearing 6 month clothing now, what a big boy! He has graduated from doing his favorite "Soooo big" so actual laughing! I gave him peas for the first time the other day and he gagged...personally I don't blame him, I dislike peas also. We are trying to get him in the mood for cereal, but so far it is not working. When we went to the doc today, she asked me if I tasted the cereal. I said, "No...Why?" She said, "Taste it...you tell me why he doesn't like it!" So, I did...and I don't blame him. Talk about wet cardboar...ewwww, I am sorry I gave it to him like that1 Dr. Crocker suggested adding banana, pear or apple to it, so I bought a few different fruits to try. I'm excited to feed him with a spoon. He shows such an interest in his bottle now. His lips get going as soon as he sees it and he gives me this little anxious whine when we sit. As soon as I put his bib on he knows what time it is, he knows food is a-comin'! He's showing some brains already! I started reading to him, he just smacks at the book and eventually begins to whine, but I figure that it is better than nothing! I have always loved to read, always had a great vocabulary and enjoyed writing stories, so i would like to start him young! He has ceased the all out scream-fest that accompanies bath time...still isn't so psyched about it, but he only cries when the water gets chilly, which for Mr. McHeater, means it is still quite warm. He is the warmest little baby...he likes to be cool, but loves his bath hot. When the little duckie temperature sensor says it is too hot, that is where Liam likes it. I think part of his hissy fit was that the water wasn't hot enough...
     His toes are on the mend...I have been doing a bandage change twice daily, which to my surprise has been pleasant. i don't think they hurt anymore. I have been giving him his paci, but I noticed that it is causing blisters in his mouth, so I have backed off to only giving it at toe-time in the evening. I will be on cloud nine when I don't have to work so extensively on his toes...Baths are taking a little over an hour, and it is such a routine now that he is compliant. He only minds when there are too many people restraining him. But, he is so active, such a little wiggler, that sometimes I need help. When I do him during the daytime, strangely enough, he is perfectly still! His hemangioma is still driving me bonkers. The stupid thing is huge now...but believe it or not, Daddy had a better dressing technique and a smooth, shiny sheath is now growing over the fresh wound bed, this is a blessing! maybe the little man can finally poop without screaming. Now, his fingers are another story. They are not getting any better. He still clenches his fists, and until he relaxes a little, I am on constant boo-boo patrol. I am trying really hard to find that balance of moisture and dryness, I am trying really hard to restrain myself from putting his "sock-gloves" on, I really think they may be doing more harm than good.
     I was staring at him today and thinking how much he has changed me life...how much he has taught me how to love. I can't imagine life without him. He brings me so much joy and elation. He gave me a real belly laugh last night and it melted me. When I look at him, I feel so bonded and attached. I don't understand how mothers abandon their children. I don't understand how someone could hurt something so precious. He loves me so much. I see it in his smile, feel it in his touch. He lights up when I talk to him...he goes limp in my arms from the safety of my touch. I really don't understand how someone could jeopardize this kind of love for ANYTHING in the world. Nothing is more precious and dear to me than my baby boy. It is a love like no other. I am devastated when I have to leave him...I don't wanna miss a moment of his little life. He is my buddy...we make each other laugh without words. I never get tired of being with him, every moment we spend together is more meaningful than the last. The best part of this is...i know he loves and trusts me with all his heart. I am all he knows. I am his protector, his nurturer, his support. I am his world, I am all he knows. His Daddy and I are the most important things to him...and I know this will fade, therefore I am taking in every second. I am cherishing every moment. I am living in the present, and I am always one step ahead, watching my every move, to be sure that it is in the best interest of my little baby boy. Being a mother has has such a profound effect on me. I was so self gratifying, now I barely even consider myself. Every move I make is supported by an entire thought process, weighing every option, monitoring every emotion, watching my footing so I don't slip into selfishness...making sure I am selfless for Liam. I never pictured myself like this. I am truly proud of the mommy I have become. When I look at Liam, I see life. I see the happiness I have been searching for. I understand the meaning of my existence, I know why I am here. He is my sunshine, he is my reprieve from the constant negativity I harbored for so long. This little human being has made me into the person I always wanted to be...I can't even remember who I was before he came into my life. I am so excited to raise him into the man he will become...he is so sweet and so special. Well...I have a snuggler that would like to redeem his snuggles, so I must be off...don't forget to tell your most important people that you love them...tomorrow is not promised, live like all you have is today!

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 baths...it 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 radio...so, 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!

Friday, January 7, 2011

Finally...

Whew...we made it through the holidays! Only one trip to the doctor. Last time I posted, I was pretty sad about the state poor little Liam's toes were in. I did end up taking him to the doctor, they were infected. He has been on antibiotics for 9 days now...Columbia (where his dermatologist is) called me and further advised me to put him on an antifungal medication as well because he was colonizing yeast in those cute little tootsies, too. Poor thing. He is on a steroid for breathing issues, antibiotics, antifungals, and an antacid...I hate giving him all this medicine. But, on the brighter side, his toes look a little better. They no longer look infected, and I figured out that if I give him a pacifier to distract him during "toe-time", it is better for all of us. He still gets all worked up, but its not as stressful for us.





Despite all of the bullcrap that the little man goes through on a daily basis, he is a happy baby! Last night he was sticking his tongue out and smiling at his daddy! He has also discovered that his fingers taste pretty good, even with Aquaphor on them! He no longer scratches his adorable face, so I try to keep the socks off his hands for a little while longer now...now he just scratches me! He makes all kinds of noises. Grunts, squeals, fake out cries, LOUD screamy cries, seems like he tries to talk sometimes...makes vowel sounds! He holds his head up so well and is quite the kicker. Lately he has been staring at his hands, like "Are these mine? Whoa...they are!" and then he smiles at them. I love this stage...everything seems amazing to him. He has so many expressions, he really gets those eyebrows moving! I am in awe of him, I can't get over how absolutely perfect he is! I also love the fact that he adores Scott and I. He loves to cuddle with me, and when Scott comes home, he loves to cuddle with him. He is so loving. I have a hard time putting him down, I just love him in my arms. He is a wonderful little gift!



He had a great holiday this year. There was so many gifts for him and so much love! Even though he probably didn't enjoy it like we did, it was so nice to see everyone get excited to see him! This child is loved so much. He has us all wrapped around his delicate little finger! I am beside myself over all the people who have supported me through this tough phase of his life. The EB routine is stressful. But I'm beginning to settle in. I just have to do what I have to do. Bathtime is a nightly ritual. It takes a while, and it is a necessary production. I need help with his dressing changes...I need help calming him down. And so many people in my life have pulled through for us. My husband is the best...the poor guy never knew about what EB entailed for an infant. Shoot, neither did I...although I do have EB, I dont remember what it was like to be a vulnerable, scared and sensitive baby. Fortunately my mother has a pretty good recollection of what it was like to take care of me, and she loves to help me out with Liam. He is her sunshine, too! And Liam is also quite the drama king. Oftentimes he just cries to hear himself cry I think. No tears, full belly, no gas, clean diapy, not tired...just whiney. (Its kinda cute, when it doesn't turn into an all out scream fest!) His crowd pleasing move is the quivery lip...he melts all hearts with that one. He also has really long eyelashes and when he frowns and squints his eyes, they curl up onto his lids making him look even more precious, yet pathetic, which impulsively makes anyone wanna scoop him and love him to pieces. Most of the time, the quivering lip is signifying that he is hungry (or starving, he believes)...and to my dismay, is diminishing in frequency as he gets older. Oh, he is my little darling...and he always will be.

Well, I think I'm gonna join him in dreamland...Nitey-night...