September 23

A lot has happened since I last wrote to you!

Last week Houston was hit by Hurricane Ike. We lost electricity in the early hours of the storm and it wasn’t restored till nearly a week later. Granddaddy and Grammy have a generator, so Saturday morning you, Daddy and I packed up and went to their house to stay until we got power at home. In the meantime, the city was blessed with gorgeous weather and we all were completely comfortable without AC. School was canceled for Uncle Clayton and Auntie Shelby, and Daddy had a couple days off work. We had fun playing board games and soccer, eating outside together, and sleeping in the living room with a big industrial sized fan on mattresses pulled from the bedrooms at night. The first few nights you felt a little homesick and didn’t sleep well, but for the most part you were thrilled to stay at Grammy’s where you were held almost constantly. Overall our damage was minimal, with the greatest loss being over 150 bottles of breast milk. Unlike formula, it has the cholesterol that is so important in treating SLOS and with your digestive issues it is much easier on your entire system. It was hard for me to have to throw it out when it thawed. But with the help of neighbors, we were able to save about 100 bottles. That sounds like a lot, but really is only about 10 days worth. Still, I am not worried. God knows what you need and provided you with plenty to begin with; I am sure he will replenish our supply.

The evening of Ike, when the wind was just starting to pick up, we went outside so you could catch your first breeze. We saw the first piece of debris come down the street and you, believe it or not, caught it! You are a natural athlete!

Then you started to blow away in the storm...but don't worry. I caught you. Look at your sweet little face! You loved the wind in your hair!

We had a couple of doctors appointments last week. We met your new pedi surg Dr. Kim—I like him a lot. He said your colostomy and G-Tube site look great, and that the anoplasty was a complete success. I asked him how long he thought it would be before reversing the colostomy and got the answer I was hoping for…he thinks you are big enough and ready for the reversal! Even though your stoma looks good and your skin hasn’t had any break down, it is becoming more difficult to care for your ostomy site. With each passing day you squirm and wriggle a little more causing the bag to leak more often than in the past. I never thought I would so look forward to changing dirty diapers!

But your eyes are the most important thing right now. We met with the glaucoma doc and the plan is to have an Exam Under Anesthesia (EUA) to check eye pressures. Depending on what they find, you will either have surgery while already under, or be fitted for contacts and a more accurate prescription. If surgery is necessary, you will take a few weeks to recover from that and then hopefully we will reverse the ostomy within the next month! That is about 10 more ostomy changes…let the countdown begin!