Alittle history!

I'm not really sure how to start a blog, I figure alittle history about us would be good! Steve and I got married Oct 16 2004, we had Dylan 9mos later on July 17 2005 at 10:16am. We decided to try for another one almost 3yrs later, we weren't "trying" we just figured, if it happens, then it happens. Both my pregnancies were totally different, with Dylan I ate everything and gained about 70lbs. I never had any type of morning sickness, the only thing that bothered me was the smell of meat being cooked. I went into labor with him the day before I was scheduled to be induced, and delivered the next morning. Dylan was a healthy 9lb 4oz baby boy who measured almost 2ft tall! He was the cutest thing, and became my world. Everything Steve and I did was for Dylan, our goal is to make him the happiest kid out there. He is kind, funny, a ladies man, shy, and one of the most respectful boys I've ever met. Then had Lucas, I was induced with him at 39 weeks hoping he wouldn't be as big, he measured on ultrasound at around 7lbs so we figured everything would be fine. When Lucas was born, weighed only 5lbs 10oz and measured at 18 3/4inches. I knew then something was wrong, I wasen't sure what, but something just didn't seem "right". We started noticing things once he came home. He was so "time consuming", everything had to be done in a certain way, and if it wasen't done that way he would have a fit. He needed to be swaddled in 2 blankets in order for him to sleep. He didn't want to be cuddled, he would only eat/sleep unless he was sitting in a bouncy seat or his car seat, and he had to eat every 2hrs. In September, we found out he was allergic to dairy/soy proteins, and that he had severe acid reflux. Since I was still breastfeeding, I had to take all dairy/soy out of my diet. That lasted about 6wks, then he had to start using Neocate since it was the only formula that he could tolorate. In December we noticed he had a hernia, we were sent to a surgeon, and he had a 2inch long, 1/2 inch wide hernia removed on 12/13/08. Everytime we'd see the pediatrician I'd ask what was the issue?? I know every child is different, but to be totally different then ANY other child I've known is alittle odd! He was still sleeping only 1 1/2 to 1. 45 hrs at a time, still only drinking 4oz at a time, and not wanting baby food AT ALL!!!! I then noticed a dimple on his bum and also these 2 bumps at the bottom of his spine that were causing sores on his bum. Since I decided to cloth diaper Lucas, I had to switch to different diapers to control the sores on his bum. At his 7mos check up his pediatrician listed to his heart for a long time, I kept asking what was wrong, and he wouldn't say anything, I pointed out the dimple on his bum, and the bumps at the end of the spine and he said he needed to research something and left the room. Minutes later he returned and said he wanted Lucas to see a neurosurgeon, genetisist, and get a MRI of his head and his spine. He then told me that Lucas has been measuring small since birth. He is currently only in the 4th percentile for weight and not much more for weight or head size. A couple hours after we got home, the pediatrician called and said that he wants him to see an endocrinologist aswell. So I get all of these things scheduled and here is what we found out..... Lucas has Williams Syndrome, a heart murmur, shortening of the pulmonary artery, he has a lazy right eye, a tethered spine, extra spinal fluid, chiari I Malformation, 6 Lumbar vertebre. He also had a swallow study done and its determined that he dosen't swallow, he bites the nipple of the bottle and arches his head back so the formula can fall down his throat and on the occasion that he eats baby food he rocks back and forth so the food falls down his throat. He also had an early intervention evaluation and the decided that he is developmentaly delayed since he just started rolling (at 8mos), is yet to sit independently, dosen't yet babble or show any sign of talking, so now he has OT/PT every week. Since all of this was found out in about 1 month, I never actually dealt with any of it emotionally, I just made sure all the appointments were made, Dylan was cared for while at the appointments, and when I wasen't at an appointment, make sure Dylan was "feeling the love" from his mommy and spending time with him doing whatever he wanted to do. I would read alot about WS and and read alot of blogs, but never actually dealt with anything, the only thing I knew is that I didn't want, and wasent ready for any "equiptment" in my home....Then it happened. Lucas was scheduled to see his genetisist to follow up on all the visits we have had and the GI dr came in to see us. At that point Lucas was waking every 1 1/2hrs to eat, but would only eat about 18oz a day, with no baby food. Since we've been dealing with constipation they took an xray of his stomach and found that it was empty, there was no blockage, but mostly, there was no food, he didn't want to eat, but he had nothing in his stomach. So Dr Rapucci explained to me that the time had come for Lucas to have a feeding tube placed, this was on a Monday. Dylan had an end of the school year show at his preschool on that Thursday and while there I received a phone call from the Dr scheduled to insert the feeding tube, she called to let me know that they would be doing the surgery the next day and I needed to be at the hospital at 7:30. And that brings us to now, Lucas has had the feeding tube for alittle over 1 week now, there is "equiptment" in my house and he is finally eating or tubing the amount of formula that he should be taking in daily. It still totally freaks me out that there is medical equiptment and stuff in my house, but I'm dealing with it. I'm managing to take care of it and I'm just glad he is eating, he is also sleeping better which is a plus considering now no one will watch him for me. This beings us to why I started this blog. I think its important for everyone to know how we are doing and figured this would be the easiest way. Also, I'm hoping it will be a good outlet for me to voice my concerns, fears, and "issues" and I have. So lets start.....


Today we went to a birthday party for one of Dylans friends and that's were it hit me, Lucas is different. There were tons of babies there that were younger then him, and they were sitting on the ground together in a cute circle, playing and babbling with each other, and he couldn't even sit, they were eating cake, and baby food, and ice cream, and Lucas had a bottle. I felt so out of place. Dylan was having a blast, and I was on the verge of tears the entire day. All the parents were staring at me (so I felt) and there is Lucas in his stroller or in my arms, doing nothing but sucking on a pacifier, and rocking back and forth. I was so excited to bring Dylan to his first birthday party, and couldn't wait to leave. I know what your saying, will all his issues obviously I knew he was different, and I did, it just has never been shoved in my face that way. We've never been around other kids his age or younger in that type of setting. I still haven't figured out how to work past that, but I know I need to. I can't stop our lives just because my child isn't like everyone elses. Ok, its now 2:30am so I'll finish this post later...