Wednesday, February 8, 2012

For Your Information...Part 2.....Pssssst...this one is happy!!!!

Oh, boy...time sure does fly. I wanted to start this blog to chronicle Liam's life, and somehow I let a whole darn year go by without updating. Things just get so busy, and having a very active little man just adds to the craziness.



So...Where to start???


Well, we have met all our milestones with ease, with the exception of walking. Liam is still not walking yet. He he is cruising and pulling up, and he enjoys taking walks with you if you hold his hands! We are no longer wrapping his feet, or any other part for that matter, because 7 months ago I figured out that we had come to the point where it was doing more harm than good. So, if you adjust the time to his current activity level, we are still pretty much on point. He wouldn't even put pressure on his feet 7 months ago, the bottoms were very blistered. Through meticulous wound care, various ointments and trials, we have clear soles. He has been putting pressure since I stopped wrapping, and they cleared themselves right up. Mind you that he no longer does reflex kicking either, he doesn't rub his heels anymore or scrunch up his toes. We still have feet problems, don't let all that positivity lead you astray...they just aren't on the soles, the migration has occurred onto the sides now. Currently we are working our way onto his arch, and I am keeping my fingers crossed that it doesn't impede his progress and make him not want to walk. If it does, well...again, its life. They come and they go. We are also dealing with some nasty blisters on his hands. Not a lot of blisters, but the ones that are there are tough, deep and they wont go away! He is pretty unphased though. Barely ever complains about it. He has figured out how to play around the boo boos and to be gentle. Oh, my...he is the most gentle and gracious baby I have ever seen. He really is careful about his skin, and he figures out how to manipulate his environment to make things work for him. Of course, he still gives us a piece of his mind during wound care...but at this point, it is more out of boredom and frustration. I rarely ever make him hurt. I think that it is a relief to get the blisters popped. They don't itch or burn after they are drained (in my personal experience) and I think that in his 15 months, the little fella has figured that out. We are down to 2 sessions a day...maybe an hour in the morning (bottle, wounds, and clothing on) and since he likes his long baths, it still takes about an hour and a half at night. So, he has improved much in the year I have been neglecting my blogging! I am very happy to say that this time last year I was under a tremendous amount of stress and sadness about his skin, so much that I couldn't imagine it EVER getting any better. I have to admit, I had heard so many people tell me that the first year is the worst year, I actually prayed to make it fly by so I could just enjoy him and not stress about his skin so much. So, here we are...and it proved true for him. Thank you God. Although, I do wish that the time wouldn't fly so fast, the lesson here I have learned is that "that day" that you wish for, always comes...so try not to rush it. We always end up at today, so I am just trying to revel in every moment of my life so that I dont miss a thing when I look back. Everything has its stage and every thing eventually passes. I am really not stressing his skin anymore. I have an arsenal of remedies that I can fire off whenever we have an issue. We have a small stock pile of different wound care supplies, and ABOVE ALL, I have learned so much from the EB community and through trial and error that there is no blister that cannot be popped...er, or handled. I'm not cocky enough to say "Oh, I got this" but I am enlightened enough that I do know what to do. Thankfully, because now I can pass it on to others and hope and pray that they have the same successes!! So, besides our hands, feet and knees...we are doing quite well. He has my skin...yup...but he also has my attitude!



Lets see...what are Liam's favorites?? (Right, other than Mommy and Daddy?) Well, he loves the Backyardigans, I tell you that! He bops his head to the music and laughs at them. He likes mac and cheese, black olives, mandarin oranges, chicken parm, jello, banananananas, pirouette cookies, crackers, coooooookies, our pets, fish(ies), loves being read to, cars (cahhhhhs), buses, planes, cats, balls, computers, butterflies, the pool, walks, the beach, bird(ies), feeding the birds, pens, phones, remotes...wait, shouldn't I just tell you what he doesn't like? Because the kid pretty much likes everything. There are, of course, a lot of foods that no longer tickle his fancy, but he is really agreeable and excitable. He is very easy to please. There really isn't much that makes him cringe. He is such a happy baby, he has fun...he really does. He loves to clap for himself and aims to please. He loves the praise we give him, and he gets a lot of that. We cheer and squeal for everything, and it has reinforced some really cute behaviors. He rarely even gets told no, but then again, he did just start cruising around. He hasn't officially gotten himself into trouble yet. (Well, tried to eat a pen the other night, but I nipped that one.) Oh, his favorite is when I run away from him and hide behind a corner. He anticipates my reappearance by cocking his head towards wherever I have run, and when I come back out, I jump out and run towards him or past him and behind some other door or object. He LOVES that. He can be crying his little heart out and if I play that game, it gets him every time. Most adults will look at me like I am nuts (we do this in public, yes we do) but I don't give a poo, it makes my boy hysterical. Can't beat that. He is so loved. He is such a little blessing. My life is completely perfect. He was what was missing. 


So, you asked how I am?? Well, thank you! No one ever asks about me anymore! 


I am well! Into my last semester of clinicals! In May, when I graduate, I will be an RN. Such an accomplishment for me to have done all this while taking care of the rest of my life and keeping my sanity! I am so excited that I am going to be able to help people in the way that I want to. I can't stress enough that nursing is my calling. It was what I was meant to do (well, taking care of my family also) and it is where my passion is. I'm going places, you wait! :-) 


I have recently lost almost 40 lbs...YEA!! Got rid of that pregnancy weight, still got some to go, but I can sure tell you how much better I feel about Melissa. I am really putting my pieces together. Getting to that place of self acceptance and confidence. It has been such a long road for all of my struggles, but I will say that I am happy with who I am. Finally. Whew, that actually felt really good to say that. I am really happy with the way I handle motherhood, too. All too often us moms question whether or not we are good, worthy moms...and I can honestly tell you that I don't ask this. I know that I am a good mom. The 4,000 pictures of my smiling kid gave me that idea. And the smile at the end of the day (mostly...today I got a push to the nose when I left and snubbed when I got home.) 


Well, that is the beginning to a new year of consistent posting. Like always, feel free to leave me your comments, even if you seem to have a problem with my happiness...and if you are in any way involved with EB and need a friend, feel free to email me. Also, I am on facebook at Melissa Krawiec-Curtis (...never scared to leave my name anywhere) and I do accept friend requests, on the honor system that you really want to be my friend and not request me maliciously. Toodles for now, God bless!!



Monday, February 6, 2012

For Your Information...Part 1

So, I have neglected my blog for sometime now...and I promise that I will be updating everyone on Liam's remarkable progress over the next week, but tonight I must put some thoughts to rest, so that I can sleep soundly.

For a many, many months I have not gotten any mail from my blog, because why would I? I haven't been updating anything. All of my friends and family share my life with me on facebook, where Liam is quite the superstar (if you ask me!!) and I have just been so very busy. This morning I woke up to find a comment on my blog:


"What kind of an evil person would KNOWINGLY take any chance of giving this terrible disease to her child? Every time he is in pain remember that YOU INTENTIONALLY caused it. It is your fault. You KNEW he was going to be subjected to a life of INCREDIBLE PAIN."

Now, most people would just delete this, but I am not most people. I decided, after a long, hard thought session, that I am going to leave it up. I am going to leave up the comment that had me searing hot mad all day long. I am leaving it up because I want other people to see it and hear the hate and ignorance that humans are capable of having towards people that they have NO idea about what they go through. I want to take a moment to address "Anonymous" since I cannot address them properly because they didn't have the cahones to leave their real name or contact info. 

Dear Anonymous:
Thank you for your uncalled for comment on my blog. Thank you for taking the time to read my entries about how HAPPY and LOVING and SWEET my son is, and then berate me for having children. Contrary to what you believe (since you KNOW nothing about EB or myself) I decided to have a child because I love children...and I can provide a nurturing, happy and safe home for rearing a child. I am neither selfish nor evil. I live my life to help others. I am a best friend, I am a good samaritan. I am a nurse, I am a helper. I am a strong, resilient, charismatic and loving person. And, above all, I am a mother. I try to educate people about EB. This blog was created so I could share what I go through with others going through it. Not to be subjected to your ignorant thoughts. There is a lot more to having a child than EB. Why should I deprive myself? Am I less of a woman because I have a faulted gene? Do I not have the ability to raise a happy, well adjusted and loving human being? I am not going to lash you, because believe me, I could. But, just know that I know you must've googled EB to even have found this blog. I know you read all the posts. And to know that I infuriate you enough that you had to write that just makes it clear to everyone who reads this, and all my other EB moms I shared your wisdom with, how we need to step up the game on awareness. You jumped the gun a little...sorta stumbled onto someone's blog that has a lot more knowledge on the subject than you would ever care to know. You hurt my feelings. You upset me...but you did not succeed in making me question whether or not I should be a parent, which was your pure intention. Just remember that only God can judge us. Only God can create a life as precious as my Liam. My son is the epitome of happy. My son does not live in constant pain. My son is loved more than anything in the world. I have more friends and people that love me than you could ever even fathom. No one likes ugly. And you have went out of your way to be hideous. Please be respectful of other people's lives. You never know what someone is going through or has been through. Your opinion doesn't count in the grand scheme, so perhaps ponder the idea of keeping it to yourself. You should be ashamed of yourself. 



Ugh. OK. Now that I got that out of the way... I feel better. Thank you to all of my friends that were so supportive and loving. I am so blessed by this life. God works mysteriously. I am far from perfect, but all things happen for a reason. When you find your purpose in life, it is magical. Being the mother to Liam is the most amazing and humbling experience. I wouldn't change anything about him, because then he wouldn't be who he is. Wishing that he didn't have EB would be wishing I had a different baby. At conception he was who he is. And he is phenomenal. He is beautiful. He is loving. He is my soul. And my husband and I love him to pieces. I have a mother who loves me, and who adores Liam. I have the more people in my corner cheering me on than I could ever have dreamed of. I have friends that really "get me" and really love me. I really wouldn't change a thing about my life. So, when you are reading this, and you get to the point where you want to say something crass or delusional...just remember, I really don't care, I have too much happiness and fortune in my life to entertain regrets. God bless you all, each and every one of you!

Tuesday, May 3, 2011

Keeping way tooooo busy...






I know, I know...its been a while...I think about blogging everyday, but between school and Mr. Liam, I just can't seem to find the time! So, while he cat naps I am going to try to update!

Life has been treating us really, really well. Liam is tipping the scales at over 18 pounds and is now about 29 inches. He is wearing 12-18 month clothes and he is only 6 and a half months! He is doing so well. Sitting almost all on his own, playing with all his toys (and whatever else you put in front of him!) and chatting like crazy. We had a relapse on his voice about a month ago, he started getting hoarse again, and is now back on his breathing treatment and reflux med. BOY, what a difference. He does this sing-songy high pitched chatter, it is the cutest thing! He is so alert and engaged in what he does lately, when he concentrates he drools puddles! He is just such a happy baby, so full of life and love. It is getting easier to make him laugh...it doesn't take much to make him smile though. He smiles at the dog, the cat, the fish, the lamp, the ON DEMAND channel, his bottle, and of course his family. He has a new obsession with windchimes...likes hearing them and making them play music. They catch is attention even when he is inside and in hearing distance! He is just a doll, he really is. I am so blessed. He has truly made the past 6 months the best time in my life...he has taught me so much about really living. I just can't get over how fast he is growing. His hands and feet are so chubby and big now, although I am looking forward to every milestone, I am already missing the tiny little man he was!

His skin is, well, worse. He is very active, and although he does seem to be attempting to be gentle, he is constantly moving and squirming. His hands and feet, of course, are still the worst. But, he has sores all over his legs now. I try to keep it under control, but I find that it is oftentimes an effort that becomes useless. Some days when I go to change his bandages, there are dime sized blisters on his feet...his heels are just blisters under layers of scabbed callouses. I try to debride them the best I can, but to no avail, he just gets more and more. The good news is that as many times as I find new blisters, there are lots of scabs that I must take off from old ones. It is a never ending battle. I have been finding myself being frustrated a lot lately...like I want to enjoy this time with him but I am secretly praying to fast forward to when he is walking and no longer needs hours of bandage changes and poking. He is so patient and good during boo boo time, but I know he hates it...I know it hurts him. I wish he was able to go sockless and not hurt himself. He is so apprehensive when I take the bandages off at night. He guards those little piggies, like he is scared that someone is going to accidentally hurt him. I just wish he didnt have to go through this. I got through it, I just wish my little man could play with his toes and kick like he wants to. Sometimes we put pillows under his feet and let him go to town!! He loves it...but then I look under the bandages and there are blood blisters from the kicking and pressure. I really try to let him be a baby, but I hate when I am letting him do something that I really know I shouldn't be letting him do and suddenly he cries or I look and there is a new blister. I have came to the conclusion that it is what it is. And as crazy as new sores make me...they heal...they eventually heal. I haven't cried in a few months...so this must be a step in the right direction. We are going through bandaging supplies like diapers lately, since he is broken out and bigger. Our insurance is not picking up the tab, and it is getting to be awfully stressful around here. I am hoping that things turn around, because we cannot afford the costs. It is costing about 800$ a month just in bandaging. Not to mention the astronomical amount of diapers, wipees, ointments, medicines, and creams. I wish I could work to absorb some of this cost, but that is impossible right now...I could not risk someone not taking care of him like I do. I am on constant alert for new sores. I am constantly preventing infection in his hands, which are pretty heavily blistered as well. He touches everything now, so I have been fighting with red and pus filled blisters daily. I have been able to avoid systemic antibiotics, but I pray that he gains the dexterity to not fumble and hurt his hands soon, because it is just a matter of time until the bleach soaks and vinegar soaks don't make it. We have staved off psuedomonas, staph and some form of yeast using non-pharmaceutical methods...by this age I had already been on many courses of antibiotics. So, even though I believe that the bandaging hinders the healing in some aspects, it has made it very hard to colonize infection, so all in all, I am stating that it is working better than not.

On the brighter side, he likes his baths now. I can make him laugh and smile by singing the "Little Bar of Soap" song. He just doesn't get tired of that one. The rest of my household probably does, but he laughs every time! He has started eating solids...one day he likes something and the next day he doesn't. It isn't easy trying to figure out his eating habits. He is very, very spoiled. He gets what he wants when he wants it because we want to make his life as enjoyable as possible. We want to make up for the pain by giving him security and pleasure...and I do have to say that I think we are doing a good job. I always needed someone to tell me "Melissa, you are doing great" to validate my efforts. With being Liam's mommy...I don't need any of that. I know I am doing the best job that ANYONE could do for him. I am his Mommy and I am a good mommy. It is by far the most rewarding career I have ever had. He loves me so much. When I leave the room, he stares at where I left until I come back...and when I do, he puts his arms in the air. If he is feeling needy, he cries when I stop talking or leave the room and all I have to do is reappear or make noise and he quiets right down. He is definitely a momma's boy!

Friday, February 25, 2011

Happiest Baby EVER!!!

Hey all! Just a little update on the little man...He is doing great!! He is growing at an insane pace. He goes to the doc for his 4 month well baby next week so I am not sure of his measurements, but he is popping out of his 6 month sleepers! I can't get over the amount of food this child eats, and let me not forget the ridiculous number of diapers we are going through. He has started laughing, its such a cute little raspy laugh. At first he was only doing it when you made sounds that blew air in his face, for some reason that cracks him up...now he is ticklish! Yes, people, he is a tickley little man!! He loves his armpits tickled, he will get a laugh going on and he can't stop. I think he is laughing at himself laughing sometimes. I love it! I'm getting such a kick out of the fact that my silly antics are starting to pay off. He smiles at me constantly! He really is a happy baby. I mean, we have our cranky moments, but all in all he just wants what any other baby wants...to be loved and cared for. He almost rolled over this morning, but his shoulder is in the way and he knows it...can't figure out how to get past it. He really doesn't like being on his tummy for too long, we try for a few minutes but he starts fussing pretty much immediately, so he hasn't given himself the chance to try rolling from front to back (from which I gather is easier than back to front). He has begun to take notice in the dog as well...poor Riley is in for it! He is a very gently baby, he touches so light and gracefully. He is actually pretty coordinated for a 4 month old. He has also started doing this little jumping thing when I am trying to burp him! He is such a doll...he really is so sweet and snuggly...I love this age. I love how he wants to sleep next to me and how secure he looks when he is sleeping on me or his daddy.
So, an update on "boo-boo baby"...his skin seems to be a bit more fragile than we thought it was going to be. His feet are still a mess,  his ankles being the worst. The toes heal and then re-blister, the soles of his feet are actually pretty clear. The good thing is that the skin is getting tougher, which is a key ingredient in the healing process. I am praying that sooner rather than later he begins to show a bit of resistance to blistering. If his skin stays this fragile on his feet, walking is going to be a complete disaster. His hands have improved to some degree because he no longer balls up his fists. He broke out pretty extensively on his knuckles, but it seems to be SLOWLY clearing up. He also has started, much to my dismay, getting them elsewhere. He has a few little spots on his thighs, probably from the mega-kicks he does now! I cut the toes out of a stretchy sock and he now wears that to 1-help clear up what is there by not allowing it to rub 2-prevent further injury associated with the rubbing. He is a chubby baby and I think that it may be part of his problem, his little rolls rub and touch...He has a little scrape in between his legs where the diaper is laying that showed up last night...I remedied that one by putting a little piece of gauze between the diaper and his skin. Im hoping he just gets a little scab and we dont have a big breakout there...bad spot. He also has been putting his hands and his bibs in his mouth so now he has one in the crease in his chin...I'm pretty bummed about all this. I thought he was going to be spared the massive body wide sensitivity, but once again, I think I was just trying to be optimistic about it instead of realistic. But, with every day that goes by, I become a bit more acceptant...I mean, in the grand scheme of things it really doesn't matter. It is what it is. And despite any boo-boos, he is so very happy! His hemangioma has healed on his little hiney, so he can finally poop in peace. And he likes to poop now. Smiles, grunts and squirms. Before it was like he was scared to poop...he knew that there was gonna be pain associated with the poopage. Oh, this is such a wonderful thing. I am no longer scared to take him out in public. I used to be scared bc of the pain andscreaming that he went through every time he pooped. But now it is better for everyone, especially him! He has become pretty accustomed to our evening routine of bathing and boo boos...sometimes he protests a bit, but as long as we stick him in front of the TV, he is fine. He is a real boob tuber...he even watches golf (and doesn't fall asleep).  screaming that he went through every time he pooped. But now it is better for everyone, especially him! He has become pretty accustomed to our evening routine of bathing and boo boos...sometimes he protests a bit, but as long as we stick him in front of the TV, he is fine. He is a real boob tuber...he even watches golf (and doesn't fall asleep). 
I love this little human so much. He is so special to me! He brings me so much joy, I can't believe my life is so awesome sometimes. I never thought that I could be this happy! I certainly never thought that it would be a child that brought me to this place of complete peace and happiness with myself. Now, if only I could get back in my skinny jeans...LOL. I am so excited to go through his life with him and be there for him through whatever he may need! I just can't stop bragging about being his mommy...he is amazing! Well, mama duties are calling, my little man needs some play time, Yo Gabba Gabba is getting old! Stay tuned for more updates coming directly from Mr. Liam himself, I think that 4 months is plenty old enough to start his own little blog! Thanks for sharing our lives!!

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...