Arabella’s Status/Decanulation #2

Arabella has been very busy learning how to be a big girl. To be more specific, she is learning that she’s gotta fight for attention. Let’s just say she gets it:D She has become quite feisty and sometimes demanding but lets be honest, how else is she going to survive in our house. She can still be sweet and shy but mostly she’s pretty confident. She LOVES to say “Hiiiiiiiii!”. She will say it over and over again with a big smile on her face to show off all 6 of her pearly whites.

Arabella is 14 months old! Since she came home she has had weekly visits from an Occupational Therapist and now a Physical Therapist. Initially we were concerned with her hands because she never extended her thumbs. As she’s gotten older she has resolved that and other concerns but new ones keep coming up. She has low muscle tone and this is the reason she has certainly not been expected to walk at 14 months. The therapist said that it is best for her to crawl as long as possible to build muscles that won’t be strengthened when she does start walking. They are always so impressed with how well she progresses. Because of her very long and petite build and very flexible joints, the therapist is sure she will be a ballerina:D

As far as her vocal cord paralysis goes, we are very hopeful. With Arabella I haven’t ever allowed myself to think about the future. I feel like I made the mistake of constantly looking to the future with Aidan and I didn’t live in the present. Granted, the present with Aidan was often unbearably difficult but I wish I would have tried to live in the moment more instead of waiting for the future. It’s also very scary to look to the future when the future could be bad. Yes, we have always HOPED that her vocal cords would heal but there is never a guarantee. Something tells me that she is going to be just fine. Why am I so confident? Well, something really cool happened! Arabella pulled her trach out again! How on earth could that be cool? Especially after THIS experience. Well the result was sooooo much better!

So, Monday night we had nothing in the house for dinner and reluctantly decided to go out as a family (CRAZY!!!) to eat. As we were driving, about 1 mile before we pulled into the parking lot we heard Arabella make an interesting sound. It basically just sounded like she pushed air out of trach hole aka stoma, really hard. I guess nobody but us would really know what that sounds like. Anyway, it wasn’t a usual sound but not necessarily concerning. It was probably about a minute from the time that we heard the sound to the time that I actually opened her door to get her out of the van. The very 1st thing I noticed was HER TRACH STICKING OUT!!! Of course, I freaked out but she was just sittin’ there looking at me as calm as can be, not even struggling for air one bit! I quickly calmed down when I saw that she was fine without it and put it back in. I got kind of nervous cuz I was having a hard time getting it back in.

Now, as much as I would love to rush to Dr. Singer’s office and tell him to take it out there are still steps we need to take. Also, I don’t know if she was breathing through her nose or the stoma (hole in her neck). Let’s just say I CAN NOT WAIT for her appointment on the 15th! I hope it’s the good news I’m expecting!