I have so much to catch you up on. I have actually been sewing! Crazy I know. While my husband was back in China Kelli flew out to keep me company! It was awesome...minus Kelli throwing up on arrival and then getting the flu, but we both made three skirts while she was here. I shall post on them later when I have the time to go through the photos.
Today's post however is on yesterday's sewing project...arm restraints. Yes. I can't believe it either. Never in my wildest dreams did I think I would be sewing custom arm restraints for my daughter. But here we are.
Every day I have to change out her trach ties (aka the straps that go around her neck to hold the tracheostomy in). I usually swaddle Maaike in a receiving blanket to get the job done, but she has now figured out how to wriggle her arms out. Last week as I was cleaning the wound area she got one of her arms out, reached up, and decannulated herself (aka pulled the tracheostomy out of her throat!)! I stayed calm and cool in the moment, but after I got it back in her neck I let myself have a freak out. As trach kids get older it becomes more common, often as an attention ploy, but 7 months is a little young for that. So, for now, arm restraints it is. But, at least I made it pretty!
Maaike has started to pull her tongue in more and more. We are hoping that is because it is decreasing in size. It seems to be, but it's so hard to tell. About a month ago we had a little scare when one morning we awoke to find her over sized tongue had swelled up even bigger. It was so big that she couldn't pull it into her mouth at all and it was dry and cracking. We followed her around with little wet medical sponges to try and keep it moist until we go her up to Primary Children's hospital. Many terrible things came to the table with the discussion on possible treatments, including removing the front portion of her tongue, but it was found that she also had an ear infection and there may be a connection between the two. Some of Maaike's cysts are lymphatic and could therefore become inflamed in response to an infection like a lymph node. After the appointment we picked up the prescription and said a prayer...and it worked! In just a couple of days her tongue was back down to it's usual size and now seems to be even smaller. It is such a joy and relief to see her pull her tongue into her mouth. We love it, even if she looks like she forgot her dentures.
