Updates

We have been busy the past few weeks since Owen's birthday.  With Fall descending upon us, I have been bitten by the crafting/decorating bug.  Pumpkins bought, mums planted, and felt Trick-or-Treat bags are being sewn.  Sprinkled in between all of this fun are regular day-to-day duties that come with being Ellie and Owen's mom.  Here is what we have been up to:

Let's start with Ellie- my very busy two year old decided to eat a quarter, nickel, and penny.  This earned her a quick drive to Anna Jaques Emergency Room, which then earned her an ambulance ride to Children's Hospital Boston, which then earned her surgery to extract the quarter from her esophagus.    The nickel came out on my rug while doing the Heimlich maneuver and the penny eventually exited her body naturally.  Sigh.  Here is her xray:

 A few days later, Owen and I had the pleasure of going to Perkins School for the Blind to have him fit for a custom chair.  We brought Christine, Owen's occupational therapist, with us for the trip.  He looks fantastic in his chair- they had some models made and we put him in those, and then modified the position and angle to properly support him.  These chairs are made out of corrugated cardboard, then painted (Owen chose a blue chair with dinosaur), and given to the family.  Each chair comes with a matching table to use for sensory activities.  The chairs are made by volunteers and the supplies are donated.  Amazing stuff- we are very thankful!  We got to meet a few of the men who were crafting the chairs- I envision them to be retired engineers who like to keep busy- what an awesome way to keep active and do good things for people!

After Perkins, we headed over to Babies R Us to try out some convertible car seats. Owen outgrew his bucket car seat a few months ago in length, but still is under the weight requirement.  It has been a topic of conversation for awhile about how to safely transport him in the car given his low tone and lack of head control.  Christine and I plopped Owen in every seat in the store- about 20, I think.  For those of you who haven't car seat shopped recently, they run from about $100 to $350 plus.  I suggested we stick to the $150-$200 range and Christine obliged.  Guess which one we bought?  Yup, the most expensive one in the store.  Toward the end of the shopping spree, I suggested we just try Owen in the expensive one for comparison.  My little boy has Mercedes taste and immediately kicked his arm out on to the arm rest, snuggled in, and let his momma know this was the seat for him.  Here is my guy happily enthroned in his new chair.  Only the best for Owen:

The highlight of the first week of September was a visit from Jenny and George!  Jenny is an awesome friend- I suggest everyone have a Jenny in their life -but not my Jenny because I don't want to share her.  We became friends while living in Minnesota and our friendship has continued to grow over the years as she and her family returned to their home state of Oklahoma and Pete and I returned to Massachusetts.  Her son, Silas, was born three days after Ellie and they are destined to wed some day (I hope...).  Jenny has been a huge source of support this past year - and she is a clinical psychologist- so she knows what she is doing.  Her visit included a trip to Rockport, hanging with the kids (she brought her 7 month old son, George, who is an adorable little mood booster wrapped in a compact little package), and lots of good food.  It was amazing to have her just pop in for a weekend.  We will be heading out to visit her and the rest of her family at the end of October.  We are very excited!  Here are a couple pictures of the visit:

Ellie and George making and eating music

George and Owen

Unfortunately, the day that Jenny and George left, Owen and I had to head into the hospital for another EEG.  Owen has been doing something we labeled "the typewriter" since the end of July.  At first, it was very subtle and we didn't put a lot of thought into it.  Each week, the slight jump his body would make became more and more exaggerated.  We noticed it occurring when Owen was waking up and this repetitive movement could last for ten minutes a few times a day.  One of Owen's therapists suggested it was a form of seizure so we videotaped it and emailed it to his neurologist.  The EEG showed that Owen is having a seizure called Infantile Spasms.  Here is how the National Institute of Neurological Disordered and Stroke defines this seizure:

An infantile spasm (IS) is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood known as West Syndrome. West Syndrome is characterized by infantile spasms, developmental regression, and a specific pattern on electroencephalography (EEG) testing called hypsarrhythmia (chaotic brain waves). The onset of infantile spasms is usually in the first year of life, typically between 4-8 months. The seizures primarily consist of a sudden bending forward of the body with stiffening of the arms and legs; some children arch their backs as they extend their arms and legs. Spasms tend to occur upon awakening or after feeding, and often occur in clusters of up to 100 spasms at a time. Infants may have dozens of clusters and several hundred spasms per day. Infantile spasms usually stop by age five, but may be replaced by other seizure types. Many underlying disorders, such as birth injury, metabolic disorders, and genetic disorders can give rise to spasms, making it important to identify the underlying cause. In some children, no cause can be found.

 
This is not great news for Owen.  The positive about this seizure is we can actually do something about it.  Owen is on a medicine which should work to permanently stop the seizures.  It feels amazing to finally have something we can work toward fixing as opposed to just trying to maintain quality of life.  

This past weekend, we made our annual trek to Cider Hill Farm for apple picking and cider donuts.  Yum, Yum, and Yum.  Fall has arrived!

September 2010

September 2011

September 2012