To Our Babies

I love you forever, I like you for always, as long as I'm living my babies you'll be.

Wednesday, June 16, 2010

A little, ok a lot, about our miracles...

My husband and I met almost 10yrs ago working at Six Flags in Colorado. I was on the medical team and he was a security supervisor. It was definetly love at first sight! We married Sept of 2002, and were blessed with Ben about 6mos later.

Ben, he's 7 now, and the funniest kid. He loves to make his little brother and baby sister laugh. As he told me one day he is "very interested in the universe and baseball" Can't argue with that! Ben is in his first year of coach pitch, and enjoys taunting his Dad because of his awful pitching. One thing that makes Ben extrodinary is that he lives his life with Asperger Syndrome. He also deals with some pretty tough Sensory Problems along with Crippling Anxiety. Despite all of that, he has some good friends, and is the most loving child I've seen. He does receive therapy and some medication to help his function with daily life, and he is doing amazing. Ben will be starting 2nd grade in August, and he can't wait!

Next we have Princess Grace, she is quite the Daddy's girl. Fortunatly she is completely healthy, although she has a hard time understanding why she doesn't go to the Dr all the time. We make sure to give her some extra attention, as do her friends, aunts and grandparents. Grace currently has her heart set on painting her room purple so we are going to see if we can find a color everyone can agree on. She is my little mother, and has been so amazing when I need her help. She was even able to call her Daddy one day when I was too sick to get to the phone, she is definitly my hero!

Now to the first of our trouble makers. Sammers, my little monkey man. We don't know what's going on with Sam. He seemed fine after he was born, but at 2mos old my mom noticed that his left arm was turning in a bit funny. Per his pediatrician we took him for an occupational therapy evaluation. Turns out the entire left side of his body was weak. He also had some trouble with swallowing, and was just generally a bit delayed. Sam used to zone out, but we didn't think much of it at the time. When Sam was 13mos old we witnessed a grand mal seizure. He was taken for an EEG and we were told that it was abnormal and our beautiful boy had epilepsy. We were devastated, but determined to make sure he had the best life possible. For awhile Sam's seizures seemed to be well controlled and he was thriving, that is until spring of 2009. Sam started having seizure after seizure, and there was nothing we could do. He earned himself two rides in an ambulance, and several ER trips. In June of 2009 Sam had the worst seizure yet. He doesn't have your typical seizure. He goes completely limp and blank, can't swallow, and can't respond. In June of 2009 he had a seizure at Chik-Fil-A. We had to call an ambulance. They took us to the ER and he got Ativan. Afterwards he couldn't walk. We thought it was just an odd reaction to the ativan, although he'd had it before. Later that evening he started screaming, and couldn't recognize that we were there with him. He then went completely unresponsive. His pupils were pinpoint and unreactive to light and we could get no response from him, even with painful stimuli. I took him back to the ER and he was admitted. He went in and out of a coma three times. We were there for 8days, and they were able to catch a seizure on the EEG. Turns out what we were seeing was not in fact seizures, and had probably never been seizures. Talk about a punch to the gut. He was pulled off all his seizure meds and initially seemed to be ok. Then we started seeing more and more episodes. They all looked identical to what we thought of as seizures. Sam was spiraling downhill right in front of our eyes. At this point we became very involved with Genetics. Dr Sharer, his geneticist, made the decision to admit him and ultimately put a G-Tube in. Since his tube was placed he has not had one episode. Now, he isn't growing, but at least the episodes have stopped. At almost 4 he weighs 28lbs and wears 24mos clothes. It is now believed that he has a mitochondrial disorder, although which one we aren't sure yet. He doesn't seem to digest, store, and use energy correctly at a cellular level. We are waiting on yet more test results.

And our last troublemaker, Miss Claire. She is almost 2 1/2 and full of attitude! Claire has had trouble since she was born. She was not a preemie, however she acted like one. She had a lot of trouble eating, and severe reflux. She was also severely delayed in her milestones. At first we thought it was because of her reflux. At 5 1/2mos old she had surgery to place a Nissen, which was to stop her reflux. She also had a g-tube placed. We thought all our worries were over and she'd catch up in no time. Turns out we were wrong. She is still delayed, has a lot of trouble eating, her stomach doesn't empty correctly, and she is a tiny thing at 22lbs (12mos clothes) It is also believed that she is suffering from the same mitochondrial disorder as her brother.

So, in a very large nutshell, those are my babies. We also have a dog, 2 fish and 3 cats so it's a bit of a zoo here!


  1. Your children are beautifully and wonderfully made! Praying for you guys daily.

    Sarah (Eryka)

  2. I'm so proud of you! This blog looks fantastic. Keep it up.