Shove Off 2010

I think its a classic case of a love hate relationship. That's right, 2010, I'm talking about you.

Love- seeing so many firsts with Liam, doing the typical baby stuff from talking, eating, laughing, goofing around, you name it, we had so many. Making new friends who understood our concerns, who've been throught it- we love you and your beautiful kids. The supportive family and friends who called, emailed, visited both in the hospital or at home, you gave us strength we didn't know we needed. I love that my relationship with my parents and sister and brother have changed to this amazing level. (Yes, we are moving out soon I promise.) The prayers of those we didn't even know that extended to thousands around the world, with messages of hope and love. You have made us feel touched by God Himself, you saved our baby. Its given us a new passion, a way to spread more love and awareness. I love that I've been given an insight into a part of this world I would never have known about without Liam- parents of not typically healthy kids. As a wonderful micro premie Mom shared with me, this is an exclusive club no one wanted to be in but we are. My love for Children's Hospital of Philadelphia is a deep one, we will never forget the names, faces, the helicopter pilot, doctors, surgeons, the moments that truly give us hope. We still need them as we continue to recover and we will do what we can to help CHOP do this for so many other families.

Hate- I will never get an answer to so many questions, like the one we asked a million times as a kid- why? I've confessed to every sin, I did my penance, I consider myself a decent person and I can't stop blaming myself for my son's health. I hate myself somtimes, was it that stupid chicken nugget I craved at 34 weeks pregnant that gave him two major diagnoses? No, then what the hell? Don't give my son the penance for the way I've led my life is how I think when I am honest with myself. I hate the anger I still have and that I know my prenatal care team can never have a finger pointed at them for all the mistakes they made. No other parent should have to have their life turned upside down. Probably the most important thing I've learned is who my true family and friends really are, and I hate that I lost so many people I thought were supposed to care about me the way that I cared about them. This was a rough way and rough time to learn what love really is but life is certainly short and I'm not wasting my time on them anymore. To shun my son because of Down Syndrome or use the word retarded, to not call and ask if he is ok, or email or text, or something and to say you're a friend, a family member, that's something I cannot forgive. And I hated that I had to pretend to be ok with what was happening, be strong and shut up, not my strong trait. I could not scream, cry, hit, curse something and just get it out. The Diary of a Mad White Mother is something I could have played the lead in. However, I did love that I slightly transcended into Ally McBeal and imagined myself doing this during specific moments during the last year.

I could go on, in both categories, for quite a while but I'll spare you my ranting and raving. Alex on the other hand, say a prayer for him, he gets to hear the majority of it. Every year will have ups and downs. This year had a few more downs than imagined but the biggest up is napping right now after playing outside in the snow for the first time today and loving it. That up loved opening up presents and ripping the wrapping paper. And that up, he is just the joy in my heart and life, and ultimately, I'm humbled for this gift.

A prayer of health, happiness and joy in 2011 to all- thank you for being our miracles this last year. We would be nowhere without you. Liam waves hi and gives big kisses with a little bite at the end to you :o)

Happy Holidays,

Sorry this is a bit late but I hope everyone had a wonderful holiday! Here is a picture of Santa and Liam!

We had a crazy week leading up to Christmas including a trip to the ER with Liam which led to a few days of observation. Because of his immune system, with any type of fever we need to get him to an ER immediately. Last Friday, he was taking super long naps which is very rare and that night, he felt warm. Sure enough, it was 100.8, just over the 100.4 borderline. I called CHOP and was told get to St Peters and they would call ahead as should I. Alex drove while I made a ton of calls down there and explained about Liam's history but nontheless, at 6:30pm when we arrived, I had to go through it all again. We were put into the pediatrics ER in our own room and his temp was 102.4, just 20 minutes after I had taken it. We were admitted at 3am and moved to a room, but until then, we had all blood and urine samples, IV started for antibiotics and chest xrays. Of course every other kid there had RSV and were triaged in the hallway! A heart mom's worst nightmare.

Funny moment had to be walking Liam through the adult ER to the xray area past the man handcuffed to his bed being watched by two policemen. My guess was a DUI because I could smell the alcohol.

Around 4am, I went back and got a shower, packed a bag and took a 2 hour nap while Alex stayed with Liam in his room. We were put in isolation so any nurse or doctor who came in had to wear masks, gloves, etc and throw those out each and every time. Saturday morning was his worst moment, I got there about 10 minutes after he woke up and he was burning hot, 104.3, despite the Tylenol. His fever continually went up since we had arrived but this was the highest. He was so upset, hated life, snots out the wazoo and just crying- not our Liam.

Thankfully this last dose of Tylenol finally did it- this was his last fever and bad moments. Other than being unable to really sleep well during the day, we played, he drank bottles but wouldn't eat for us and just wanted to cuddle. All the blood work began to come back with nothing positive for what could be causing the fever. He had five rounds of IV antibiotics and by Sunday afternoon, we asked if we could leave. We were more concerned about staying in the hospital and exposing him at this point.

We were at the pediatrician the next morning for our Synagis shot anyway so Liam had an exam and the attending doctor at St Peters and our pediatrician had the same answer- viral head cold, will take him a few days at home to get rid of it. Its been over a week and he is still trying to kick the congestion- but I have also been sick for two weeks trying to get rid of it and so has Alex. Hopefully we will all get healthy and stop infecting one another asap.

In the meantime, Liam had an amazing Christmas. On Christmas Eve, Alex, Liam and I went to a children's mass and then out to dinner early. We were on the couch in pjs with a bottle of milk and hot chocolate for us big kids to watch the Grinch by 7:30pm and read our Christmas books. Santa went crazy this year as half the living room was full of toys for the little guy but he certainly has earned it. We are doing our best to not open toys until we move, which should be in about two weeks.

Christmas afternoon was the big family gathering and Liam loved seeing everyone, especially all of his cousins and watching them play. It was just a wonderful day, something we missed last year since we stayed home to keep him healthy.

At the end of the day, we are very lucky with his health- since being discharged in March, we have had only two ER visits and only one fever. He has done really well and is a fighter. The new year will only lead to greater things for Liam, who is now a whopping 23+ lbs. I cant believe he was 5 lbs only 13 months ago...the kid likes his food! I hope you and your families had an amazing holiday and if you're on the East Coast, enjoy the snow!!

Season of Hope

We are gathering the toys for CHOP's toy drive this week and I saw this message from CHOP today- they have created a message system for all the kids to see when they turn on the TVs in their room. If you have a few minutes to send some encouragement, please do!

http://giving.chop.edu/site/Survey?ACTION_REQUIRED=URI_ACTION_USER_REQUESTS&SURVEY_ID=3041