Neurodevelopmental Evaluation

When Elijah was born, actually before he was born, we were asked to participate in several studies. They really have little answers when it comes to HLHS, and they are working hard to get some. We agreed to the studies that did not require any invasive procedures for Elijah. One of those studies involved a study team following Elijah's neurological development. I had an MRI before he was born, he had another MRI after the Norwood, and about a month ago he went in for an evaluation.  They used something called a Battelle Developmental Inventory, Second Edition which involved a parent interview, structured activities with Elijah, and observation of Elijah.  The test assesses adaptive, personal-social, communication, motor, and cognitive skills.

Overall, Elijah did very well. He placed in the average range for everything. Areas of strength for Elijah were in self-concept and social skills and attention and memory skills. Possible areas of weakness were indicated in gross and fine motor skills and receptive language. All in all, Elijah is doing very well. He started walking a bit late and that was to be expected. He is a rock star. They will follow up with him in a year to do another assessment. The great thing is that they not only will give you the results of the testing, but they will also help you connect with agencies in the event that you need assistance.

There are so, so many variable when it comes to Elijah. It was a relief to know that this, at least for now, was not one of them. 

A bit of sadness along with holiday joy...

I don’t know if it’s the time of year, the upcoming holidays, or just the passage of time, but I have been thinking about my grandma a great deal lately. I miss her.  I talked to my sister the other day and she said she was feeling the same way. We reminisced and shared memories.  With the holidays on the horizon, it is hard not to think about my grandma. She used to make dresses and sweaters for the orphanage and she was the best baker around. One of my most prominent memories of my grandma are her cookies. She would start making cookies months before the holidays. They were amazing. She was amazing. It felt good to talk about her with Lyndsay, but it was also sad.

In retrospect, it may not have anything to do with the holidays. As time goes by and the boys get older, I can’t help but wish my grandma was here to watch them grow. I think that she would laugh at Noah’s antics and smile at Elijah’s enthusiasm for life. She would love Noah’s energy and the two of them would play and she would teach him how to cook. Elijah would be the one who would want to settle in her lap and cuddle. Elijah would be the one to sit and watch Jeopardy with her. I can see her now, holding him tight, saying soft prayers. These are the things I think about. The things that will never happen and it makes my heart hurt. 

It may be the holidays, or just the length of time between visits, but I have a strong desire to return home. To return to my roots. It has been a long time since I have felt that urge. I haven’t lived in Alaska in almost 14 years and yet it is still home to me. I have gone back before, but it was more for the fun of it, for the adventure of taking my family to Alaska and visiting with my dad and his wife. This time I feel like there is something pulling me there.  I’m not sure why I feel this way. I think a part of me needs the peace and absolute quiet that comes with wide-open spaces. There is a serenity in the landscape that calms me. I haven’t found that here. Although I do enjoy living in California, the pace can become tiresome. I need a moment to pause. The past year and a half has been filled with such highs and such lows that I think I am yearning for a moment of solitude to re-center myself.

In the end, I think it is all connected. My grandma was my family’s cornerstone. She grounded our family and was our constant. We may move, things may change, but she would always be there. I am looking for that place to feel grounded. I always felt grounded with her. I think she did that for many people. She spoke her truth and loved unconditionally. I miss her. I miss home.

Fall Fun

The boys really enjoyed Halloween this year. This was the first year that Elijah got to really participate in the festivities. They carved pumpkins, went to the pumpkin patch, and went trick-or-treating twice! Elijah is hilarious in that he wants to be just like his big brother. He follows Noah around and gets so angry when he can't do something Noah does. As each day goes by, we see a little more of Elijah's unique personality. He is an amazing little boy who is truly enjoying life. Together these boys can tear our house apart in 1.2 seconds. But man do I love them!