An Unexpected Journey: Gifts

Soon after Luke and Olivia were born, a very special person gave me a book called Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives. I read the back cover right away but could not bring myself to open the book at that point. Everything was still too new, too raw. I tucked the book safely under my bedside table for a later time when I would be ready to read it. Eventually, I forgot the book was even there until the other night when I was packing up and saying good-bye to my friend/enemy, otherwise known as the breast pump. I found the book exactly where I had tucked it away about 10 months ago. I dusted the cover off, sat on the floor, and wept as I read the beautiful, inspiring, and sometimes heartbreaking stories. These were happy tears because I could so relate to the way these women wrote about, as the back cover states, "the gifts of respect, strength, delight, perspective, and love which their child with Down syndrome has brought into their lives." If only I had had the courage to open this book 10 months ago, I might not have been so scared back then. Though I am still quite anxious about and scared of the many chronic health issues that come with Luke's diagnosis, I am no longer scared of the diagnosis of Down syndrome itself.

Still smiling!

On a similar note, we received a couple of "gifts" of good news this past week. Luke's neurologist needed to rule out any additional neurological issues that could be causing his aspiration when feeding, so he had a brain and spinal cord MRI this past Friday and another EEG this week to check for seizure activity, both of which came back normal! He will continue to have periodic monitoring for the seizure disorders in an effort to catch any type of relapse as quickly as possible. For now, however, it seems we've been able to keep the seizures under control with the ACTH treatment. What a gift that is! Last week he also had to go in for a repeat swallow study (where barium is mixed with his food as they x-ray the path of the food) to check for aspiration on solid foods. He was definitely still aspirating thin and thicker liquids, but seemed to do okay with the thicker purees. This was good news as it means that at least can take regular food by mouth (to continue oral motor development), versus everything going through the NG tube. All liquids, however, have to go through the tube. The NG tube has by far been the hardest thing we have had to learn to do, mainly because he continues to pull it out 2-3 times per day, and Olivia actually pulled it out today. Thankfully today was the last day for that as Luke will go in tomorrow for the G-tube surgery, along with about 6 other minor procedures. Though the G-tube can come with possible complications, we are hoping it will be much easier on him than the NG tube. All things considered, he is doing fairly well and seems to be making great progress lately in all of his therapies. He seems so close to trying to crawl! Thanks to everyone for the continued thoughts and prayers for him!
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And our other little "gifts"...

Olivia is all over the place with her adorable little army crawl. She is getting speech and physical therapy once a week, and is quite a quick study. Luckily, this girl has no signs of stranger anxiety, but she does hate when anyone walks away from her where she can't see them. She is enthralled with Jackson and loves to crawl and reach as quickly as she can for any of his toys, which he loves to taunt her with. (What's amazing to me is that he very rarely does the same teasing with Luke.) She is babbling up a storm, her favorite word being "Dada", though I am working hard on "Mama". She continues to be such a little social butterfly and lights up a room with that smile, especially recently with her mouth full of new teeth. Olivia for sure has a mind of her own and communicates when she does or does NOT want something! For example, today when I was trying to get her to take her milk from a sippy cup instead of her bottle she practically tossed the cup across the room. Oh, I see good times ahead with my little princess!

Jackson continues to amaze us with his energy, wit, and personality. He is finally in a big boy bed and loves his new sports-themed bedroom, but of course! His newest prized possession is Pete's framed Illini football jersey (thanks to Grandpa Mike), though he doesn't understand why we can't take it out so he can wear it. My friend Kristi sent me a wonderful quotes journal for kids, which has helped me capture all those funny things that kids say. Here are a couple of his latest:

#1
Jackson: Messing with Olivia's new sippy cup as she is trying to learn how to drink from it.
Me: "Jackson, don't touch Olivia's cup while she is using it." Repeat x3.
Olivia: Drops the cup on the floor.
Me: Trying to change Luke's diaper, so I ask Jackson to pick up Olivia's cup for her.
Jackson: "But you told me not to touch it."
Oh, touche!

#2
Jackson: Playing with his milk and pouring it on the table.
Me: "Jackson, we don't play with our milk." Repeat x2.
Jackson: Continues to play with milk.
Me: Takes milk away.
Jackson: Asks for milk back several times and then says, "But, mommy, if I don't have my milk I won't grow big and strong."
Okay, so maybe he does listen to me now and then. What a gift that is!