Two's company.

To date, this blog has been all about Emma and her medical struggles. But on November 1st, 2011 we welcomed a beautiful little boy and I am coming to realize how big a part both he and Emma are already playing in each others lives. You see, when you have a disability in your family, it's not just the affected individual who is to take a different path in life, it is every member of that family. Now, I know that Emma is the one personally feeling the pain of being poked and tested for the gazillionth time, but during this recent stay at Children's I had an epiphany........Isaac was making sacrifices too, big ones.

There we were, just 2 doors down from the first room we had stayed at in Denver Children's Hospital when Emma was 3 months old. It brought back so many crazy emotions of that terrifying time when everything was new and it felt like the heartache was more than I could possibly bear. It seemed as though the endless responsiblilties that lay ahead were much bigger than anything I could manage. I remember wanting to run away and hide never to be seen again, but my tiny baby girl needed me and I was somehow able to convince myself to hold my head high and remember that it was about her, not me. That was the visit where we learned that our lives would be incredibly different than what we had planned. That was the visit where I learned that I was never going to be like the other moms on the playground.

During this recent trip things were quite different. We are slowly but surely becoming more comfortable with our unplanned journey. I realized this as I, without hesitation, climbed into the hospital crib with Emma and began serenading the two EEG techs with, The wheels on the bus, 3 little ducks, and Old McDonald, for an hour while they covered her head with tiny electrodes. Now a days, I find myself pointing out Emma's best veins to use and helping the nurses understand the buttons on her feeding pump. To be honest I'm a little embarrassed by the freakish amount of medical terms, procedures, test results, bowel movements, dates, weights, and so on that fill my head.

Back to what I was saying...

Our sweet little Isaac came with us on this last trip to Denver and he was so incredibly well behaved and wonderful. He endured the 8 hour drive both ways and was toted about between The Ronald McDonald house and the hospital all week. At the tender age of 4 months he spent the night away from his mama and my heart broke a little when he and Justin left the hospital in the evenings to head to their room. It seemed so unnatural and unfair. On the morning of the 24 hour EEG they returned to find Emma exhausted and understandably weepy from a night of very little sleep. In came sweet Isaac, a breath of fresh air, smiling and excited to see the other half of his family. Emma perked up, her attitude changed and she too, began smiling. It was as if he knew that his job for that moment was to cheer up his sissy and they continued to smile at one another for the next few minutes. There were my two sweeties, my brave Emma looking like a little science experiment and Isaac ever so humbly rooting her on. It was then that I realized that Isaac would also make many sacrifices throughout his life in order to help accommodate his sister. He will be the one defending her in school against the ones that don't understand. He will be the one going without his mom during the hospital stays, and he will be the one expected to be quiet and patient beyond his years through the appointments. Although it is Emma that is having the daily battles with her body and it is her that has to endure the seemingly endless therapies, Justin, myself, and now Isaac will be there with her for every step of this crazy journey. There may be many times when Isaac is our little unsung hero and because of this I have decided to change the blog and make it about all of us. I will continue to focus on Emma's medical updates for those who like to keep up on her but now you'll get the added bonus of learning all about Isaac and the equally special little person that he is. I think the two of them are forming an amazing bond that will stand the test of time and I can't wait to see what they learn from each other.

We are still waiting on most of the test results from our recent visit to Children's. We were pleasantly surprised to learn that the EEG reported no actual seizures. The movements we were seeing are called *Myoclonic spasms and can become more serious if they start happening frequently. We have decided not to treat them for now as the medication is really heavy duty and comes with dangerous side effects that we felt out weighed the spasms. Next week we are heading to Grand Junction for another round of Botox treatments with Dr.Deering and will also be having a much anticipated visit with a geneticist named Dr.Manchester. He has quite a reputation for diagnosing rare disorders and I have been pursuing an appointment with him since Emma was about 6 months old, so needless to say we are looking forward to finally meeting him.

* myoclonic spasm, the twitching of one or more muscles, associated with a spike wave EEG. This is usually associated with various benign epilepsy syndromes - benign myoclonic epilepsy of infancy, juvenile myoclonic epilepsy, etc. Children usually grow out of these forms of epilepsy, with little or no ill effects.