Summer has been a busy time for our family. Elena has been spending lots of nights away from home with friends and family, and this week she's away at camp. She's also putting the finishing touches on her 4H projects, as the fair is in just a couple of weeks. Chris and I have been busy with work and church. As for Sadie, she is growing and changing every day. She's not able to roll but she's sitting well with support. She's eating cereal and got her first taste of peas today, which she accepted better than we expected. She loves to babble, chew, play with her favorite toys, and other normal baby stuff. She's also discovered her colostomy, so our diaper changes are now performed in record time! In the time since her anemia was discovered and treated her personality has changed a lot. (I think she just never felt well but didn't know why or how to express it.)
We have a busy couple of weeks ahead. This week Sadie will have more blood drawn. Dr. R (urology) was concerned that her carbon dioxide was a little low last time. She's also due for more vaccines at her next check at the pediatrician this week. Until now, I haven't been brave enough to take her out for professional portraits; we have an appointment on July 5th for those. We return to Developmental Pediatrics on July 13. On July 26 we have another big day at Riley. We start in the morning with an MRI under general anesthesia. This will help the doctors evaluate the syrinx in her spine, as well as provide some road-mapping for her PSARVUP. Following the MRI she will have a urodynamics study to evaluate her bladder function, followed by an appointment with Dr. R. We are very nervous, but in some ways this day will be a blessing for us. I am not looking forward to the IV's, ventilator, inability to eat, etc. that come with anesthesia. But at the same time it will be a good "trial run" for Sadie's upcoming surgery. Knowledge and experience are power, and the more we are back in the children's hospital environment, the easier it will be for all of us.
In the meantime, we are just trying to fill our summer with as many good memories as possible. We won't soon forget the difficulties of the last seven months. But when we look back on this summer, I also want to remember the little joys in Sadie's life--chubby little legs wearing shorts, the sensation of grass on bare feet for the first time, the intriguing sound of birds, the first smell of roses, the sights and sounds of her first Fourth of July. That's what we'll remember.
Sunday, June 27, 2010
Sunday, June 20, 2010
Monday, June 14, 2010
Thursday, June 3, 2010
If you haven't seen Shadow Buddies dolls, you really should check them out at http://shadowbuddies.org/. We saw these dolls in the Hollister manual that came with Sadie's ostomy supplies and we knew she had to have one. She has an Ostomy Buddy, but they have dolls for lots of special needs kids: cleft palate, dialysis, burn victims, etc. When Sadie's ostomies are reversed we want to have her surgeons sign her Shadow Buddy's belly. Since she will be too little to remember, this will be a great way to explain what she went through.