Tuesday, December 28, 2010

Sad Tonight

I'm pretty sad tonight. Poor Liam's toes are worse...I'm taking him to the doc tomorrow to get some antibiotics. I really thought that they were getting better, but when I went to give him his bath tonight I realized that they are far from better. They won't heal, they are red and look painful. He cried real tears when I washed them and popped the blisters. His entire big toe to his second toe is a blister...upon a blister. And to top it off, it is hard and infected. I just can't figure out how to get them to heal up. Everything I try works for a half a day and by the time it is bathtime, it is worse off. I can't seem to get this under control. Both his heels are blistered and now the ankles have broken out too. His feet seem to be getting worse. Still nothing on his body, but I'm thinking that it is just a matter of time. I felt like crying, but I just held him close after we put the dressings and ointments on. I rocked him and told him how much I love him...how he means the world to me. I HATE having to do this to him twice a day. Its like I have to torture him daily. I know he still will love me, I just wish I was making him better, I wish he was healing up. He usually doesn't mind too much when I do his routine, but tonight he was in pain. Tonight was hard. Tonight was sad.

Monday, December 27, 2010

Happy Holidays!!!

     Jeez...I can be such a scatterbrain sometimes! I thought I lost the blog, I had wrote down the wrong address! So, I am starting this out great, huh? Well, I will get back to Liam's first two months, there is so much to tell, but I definitely want to wish everyone Happy Holidays!
     We had a wonderful 1st Christmas. Liam slept through most of it, but for the most part, it was great. He loves the Christmas tree...Everyone was so happy and excited to see him! He has grown so much. He's weighing in at almost 14 pounds and over 23.5 inches...and he is only 2 months old!! Actually, tomorrow is his 10th week with us! I don't remember my life before him. He started holding his head up all by himself! And he almost rolled over at his Papa's house! We cheered him on as he rocked and arched his little back. He is so happy! He cooes and squeals, blows bubbles and grunts...such a animated little fellow. He got all kinds of clothes and toys, Christmas is gonna be fun again now that we have this little guy to amaze! We got slammed with a snow storm, over a foot and a half of snow...too bad he couldnt enjoy it. He also discovered his mouth this weekend. The fingers are going in it constantly. He doesn't like the taste of the ointments, but I assume it doesn't really matter 'cuz he keeps sucking on them! Oh, and how can I forget...he loves Yo Gabba Gabba...goes crazy in his bouncer, STARES at the TV...hilarious!!!
     I almost had to make an emergency trip to the doctor yesterday before the storm because he looked like he was getting an infection between his big toes and on a few fingers. I tried some new bandaging techniques (so much trial and error) and to my surprise it actually worked. I'm glad I didn't traipse out into the snow storm to take him to a doctor unfamiliar with his EB. So far he hasn't needed systemic antibiotics, we've been able to keep the infections at bay with some ointment. I will try everything and anything. Overall there is no improvement in the condition of his fingers and toes. They won't heal, and when they do they get new blisters. UGH...so frustrating. But he doesn't seem to mind. He protests when I have to work on him, but this is more because he just doesn't want to be fussed with. If I do it when he is asleep, it is not as much of a production. I have only cried once in the past few weeks. Basically out of frustration that I can't make him better and that I have to hurt him everyday...but then I realized that he isn't really in pain...he is just very vocal, and gets very annoyed (much like his Mommy). I have to remind myself that this will get easier, he will get better, and he still loves me (and always will). I'm applying a special kind of dressing to his heels to help heal the mess he has on them, and also to protect them from the friction when he kicks. I want him to have as normal of a life as possible, be a normal baby...but its hard to watch him do things that I KNOW are going to break him out. But as my mother says...that's life! He is just so damn cute and I am just so damn proud to be him Mommy.

Tuesday, December 21, 2010

Welcome to our world!!!

So...I guess I should tell you all about us...I am Liam's Mommy! I am 33 years old and I live with a genetic skin disorder called Epidermolysis Bullosa. Liam, my father and I have been superficially diagnosed with the Dominant Dystrophic type. We get blisters on our precious bodies because we do not efficiently produce collagen. Our skin doesn't adhere to the other layers like yours does. It is painful and it is mentally stressing. Little Liam was passed on our faulty gene. His short life has been a challenge so far, not only because of EB, but he has had a myriad of other health problems as well. Through his experience, he has begun to teach me that regardless of the cards that life has dealt you, if you perservere, all hope is within your grasp. It is never too late to fight and it is never too late to love. I didn't create this to talk about me...I created it to talk and appreciate the life of Liam!

Liam was born on October 19, 2010. I was hugely pregnant and 4 days before his due date they decided that he had grown enough. At 1:26pm, Liam David Curtis was welcomed by the most anticipated and excited family in the whole wide world. It was a birth without complications...LOL...Liam was delivered C-section...weighing 9.9lbs and measuring 22 inches long! He gave me a good loud cry to be proud of! All his "stats" made his OURS!!! I was born 9-29...he was born 10-19...my social security starts with 126...he was born at 1:26. He scored a 9 and a 9 on his baby APGAR, he weighed 9.9. Daddy was born on the 22, he was 22 inches. His due date was 10-22...that was his Daddy's birthday! And to top it off, 1+2+6=9...another 9!!! He was given to us perfect...all fitting into the "plan" since the second he was brought into this world! And then...to complete his adherence to his family, he was born with  EB. A challenge...at first a curse...now a miracle!

I didn't pray during my pregnancy. I did not look up at the sky once and ramble about the sparing of my tiny baby from the travesty of EB. I knew that, simply, it is what it is. 50% chance that he would carry my defect.  50% of me forgot about it, and 49% was convinced he would be fine. Less than 24 hrs after my little buddy was born, a huge blister formed on his butt. Right above that adorable little hiney was a large, fluid filled blister reminding me that...I am not normal...and neither is my son. I broke the news to my husband and he held me, assuring me that it would be "just fine"...and to his defense, it has been...it is...it will be. But, my friends, this was just the beginning.

Liam's Mommy's First Official Blog

     So I am really new to "blogging"...but my little baby has such an extraordinary life and so many exceptional people caring about him, I decided that I would chronicle his strength, our hope and God's plan. I have never been a religious person, and Liam's crusade has spiritually given me faith in something greater and bigger than myself. This little man is so happy and sweet despite his challenging cirsumstance that there is for certain, something wathching over usr. I hope that reading our heartfelt and honest experiences remind you of the fragility of life and how a smile goes further than a million words. No on can take away Liam's happiness...this little baby is truly unbelievable. He is my hero...he is my strength...his smile lights up my soul, his bright eyes electrify my heart. I don't remember life before him, and I can't imagine life without him. He is my sunshine, my breath, my being, my soul. I never thought I could understand a love so deep and comforting...I would die for him...he is my best little friend.