We had a full morning/afternoon today. Casey had a 10:AM appointment with general pediatric surgery. The surgery appointment went really well. We just went in to meet the surgeon and establish a relationship. Casey’s GTube has still been really leaky. The surgeon suggested we try another type of tube to see if it helps. As …
One down….
This is such a crazy week. Casey had an appointment with pulmonary this morning. She had her regular follow up as well as she had to get cleared for Friday’s surgery. Everything went well at her appointment. She was mad and did not want to be there. We were in and out pretty quick. She …
Poor Casey
Last night around 12:30 I noticed some red spots on Casey’s shoulder. I was worried that something had bit her so I grabbed a flash light to take a closer look. I did not want to turn on the overhead light since she was asleep. When I started looking with the flashlight I noticed the …
Busy Busy Girl
What a week Casey has had. She had therapy on Monday. A doctor appointment followed by labs on Tuesday. PT followed by water therapy Wednesday. A play date on Thursday. 2 therapies on Friday. Family came in on Saturday for a family party (delayed Mother’s Day and my sister and my birthdays). Casey’s cousin, Riley …
Play (Sleep) Date
Casey sort of had a play date today. Her friend Maya and my friend (Maya’s mom) Elizabeth came over for a little while this afternoon. Casey must still be tired from all her fun yesterday. She fell asleep right as her guest arrived and she did not wake up until they were about to leave. …
Water Therapy
Casey did so great at her first water therapy today. She really loves the water. At first the therapist (Margaret) tried to use the floaty collar. Casey was not having that. Once she got the collar off Casey was so happy. She got to kick, walk on the bottom, float, play in the jets, ride …
What a Day
So Casey had a GI appointment today. No big deal. We went in and overall everything went pretty good. Casey has still been really leaking around her GTube. Also, the wound around the tube still won’t heal. The doctor ordered a bigger size. I really hope that does the trick. We had to get some …
No Pool :(
I was hoping to post pictures of Casey in her first water therapy today. Sadly she woke up with a bit of a tummy bug. Her therapy was at 2, but after a few hours and MANY diapers I decided to reschedule. They could not fit us in later this week so we ended up …
Talented Tim
So Casey out grew her diaper stand around age 1. With her being so long and so stiff there was just no way to get her on the standard baby changing station. We have been making due with the floor, beds, etc. All of the beds in the house have the mattress pads on because …
We’re Home
We are back home. We took a little “vacation” yesterday. In order to get Casey into the Medicaid Waiver programs we had to do a 24 hour stay in a nursing home. We tried to make it as fun as possible for Casey. We called it a vacation and acted like we were headed somewhere …