For the record, Ellie long ago gave up her Nuk, but manages to borrow Owen's occasionally. The sleeping arrangement in our house is a bit atypical, but it works for our family for the moment. Owen now has his bean bag bed in the playroom, which at one point was our dining room. Next to his bean bag is a twin bed (which will eventually be Ellie's). Pete sleeps in the bed next to Owen. As this picture illustrates, Owen spends a lot of his 'sleeping time' awake. I wake up often in the middle of the night to hear my pterodactyl-boy squawking away downstairs as Pete snoozes happily away next to him. Owen and I are not compatible sleepers, but he and his dad seem to manage just fine. Owen still gets up in the middle of the night for a bottle and some medication, but the nights of endless screaming seem to be behind us.
Owen's night sleep pattern is a bit disjointed, but often his days are now passed sleeping soundly. The infantile spasms Owen was diagnosed with in September have not been controlled by medication. He continues to have them many times a day and Owen's neurologist believes this is the explanation for the added sleepiness. If you are not familiar with what infantile spasms are, here is a link about these terrible seizures: Infantile Spasms . We are very discouraged that we cannot adequately control these seizures, but we also understand this is a progression of Owen's disease.
Owen will be undergoing another MRI in December. We are always eager for these to take place because it is the only test that has provided us with a nugget of information about our son. Owen's last MRI was at the beginning of May. This one will be compared to his three prior MRIs and hopefully a bit of understanding about the progression of the disease will be ascertained. Owen's 'team' will be assembled for the MRI. Karen will be administering the sedation along with Alice, Owen's favorite nurse, who is an expert at finding his elusive veins on a single poke. Owen's neuro-radiologist will read the MRI and consult with Owen's neurologist. I cannot remember the name of the neuro-radiologist, but he is the same doctor who read Owen's prior MRIs. He has sent them all over the country to colleagues hoping to find an answer to what is happening to our little guy. It is comforting to know how many people we have committed to helping find answers for Owen.
On the day of the MRI, Pete and I will be getting blood drawn. We have decided to move forward with genetic testing and are very excited about it. We are hopeful it with provide a diagnosis, but also realize that might never happen. At the very least, it may shed light on what gene or genes have caused all of this trouble. We are hopeful it will give us answers for Ellie and also the possibility to have more children in the future. The testing is called whole exome sequencing. It is very new- only available to the public for a little over a year. Here is the link to Baylor College of Medicine where the test will be done. It explains the science behind the test much better then I would ever attempt to paraphrase: Whole Exome Sequencing . This test takes about 4-5 months for results. Stay tuned to May 2013 for more information!
We also had family pictures done in November. Since Ellie was born, we have done pictures every Fall. Last year, we had our pictures taken at our house one week before Owen was diagnosed. Those pictures will always be amazingly important to me because they captured our family in a very innocent and happy time. Unfortunately, Owen was not in a good place the day we had pictures done this year. We chose to use the same photographer who took pictures last winter with the Tiny Sparrow Foundation. She did such an amazing job capturing the beauty of our little boy then, and we knew she would be able to rise the challenge again. Jill is a very talented photographer; although Owen was irritable and his body was arching, she managed to capture some beautiful shots of him and our family. If you live in Massachusetts and need a photographer, I would highly recommend her! Here is a quick preview: Family Pictures with Jill Serrano
To wrap up our month, we headed to Mammie and Bankie's house for Thanksgiving. The holiday season last year was one filled with conflicting emotions. It was a seasons of firsts for Owen, but we also felt strongly it was a season of lasts. It was very difficult to feel any joy. This year, and hopefully years to come, feel like a bonus. I want to soak up as many memories with my guy as possible. Owen woke up on Thanksgiving morning in a wonderful mood. He was alert and calm the whole day. Owen joined us at the table for dinner and sampled some of Mammie's gravy on his Nuk, he visited with neighbors and tested out their armchair with delight, and he nuzzled himself into the willing arms of many aunts, cousins, and grandparents. It was a great day.
