We’ve survived our family vacation!! Not that we didn’t have our moments but overall we had a great time. Alan and I are happy to be home. The kids were sad to leave the hotel but hopefully we’ll make another trip back in the near future.
On the last day of our vacation, I was sitting in the kiddie pool with Erin when I noticed that the lump on her neck had changed. It’s hard and it has a black/blue coloring. We woke up this morning and now her left scapula area has started to swell. My heart sunk again knowing that we’re facing a real possibility that she’ll lose mobility in her left shoulder as well. Now I am trying to prepare myself that in six to eight weeks, she may not be able to reach up to touch a light switch.
Today we spent 2 1/2 hours at Children’s Hospital in the Occupational Therapy clinic. She was again evaluated for speech and then had a visual swallowing evaluation. There are a few things to watch out for but like we already knew, she’s right on track with receptive/expressive language skills. Swallowing…she’s good on that too. However during the last flare-up (and assuming during this current flare-up), her jaw will be sore and she won’t be able to open up her mouth wide again. The examiner said she’ll talk to the genetic counselor about us seeing a dietitian so we don’t have to rely on milk, yogurt, and string cheese.
After our appointment we tried to enjoy the day without thinking about the new swellings. We celebrated Larkin’s 8th birthday today so we tried to make his day special. We had to come up with something on the spur of the moment. We decided we would go to the Rainforest Cafe for lunch and have him open his presents. Larkin did fairly good considering the restaurant was loud AND we were seated next to the elephants (who roared for about 2 minutes every 10 minutes). By the time his volcano cake arrived, he had both ears covered with his hands. He ate with one hand covering an ear, one hand with a fork, and he was hutched over towards his shoulder trying to cover the other ear. Six years ago he screamed through out the entire meal. At least he’s making progress!
