Quiet Week

This has been a quiet week for Alli. We only had 2 scheduled appointments - with the GI and physical therapist. We of course had to add in an obligatory impromptu visit over to the cardiologist. During her PT session Alli's saturation levels dropped in to the high 80s and low 90s. This is lower than normal for her, so I brought her upstairs to be checked out by our favorite nurse practioner, Patti. Patti also happens to own an accessory store in Dunwoody called Bellissimo. It is in the Dunwoody Village and has some fabulous (and fabulously priced!) accessories. I highly recommend, not only because I am a fan of locally owned businesses, but because Patti has been an exceptional friend to Alli. If you do go in, make sure to tell her Alli sent you :)

Not much to report from the GI. Alli's appetite has tanked and I spent the good part of Monday and Tuesday trying to diagnose why. I gave up on Wednesday after resolving that she must be reacting to coming off the prednisolone. This hypothesis has been confirmed by many (including a few doctors). She will continue to check in with the GI every 2 weeks for weight checks and we'll see him again in a month to discuss all things food and weight related.

Last night we gave Alli a treat and let her sleep without her ng tube in. I managed to clog up the other one with one of her medicines (a less essential one) so we pulled it out. Once it was out we had some good cuddle time and she gave me some cute reassuring smiles as if to say..."thanks, mom." I think she was also saying "please don't put it back in." I had mixed emotions as I sat there and thought about how we would have to put the tube back in this morning. I enjoyed seeing her fact without the tape and tube. She fell asleep on me...something she hasn't done in ages. There have been lots of tender moments over the past couple of days. The tube went back in without incident this morning. I look forward to the day when it is gone forever. In the meantime I will appreciate it for the fact that it helps me give her all of her medicine (except for the taurine, which clearly turns to toothpaste when mixed with water).

Next week we have a visit with Dr. Campbell, our cardiologist, physical therapy, a barium swallow study, and occupational therapy. The barium swallow study will help us determine if Alli can start to tolerate thin liquids. If so, then we get to start discussing removing the feeding tube.

Samantha had some funny moments this week. In an effort to help curtail her whining/crying my mom has told Samantha that there is "no crying unless real tears." This message has clearly hit home for Samantha as she told Snickers the other night at dinner, as he was crying to be let out, "Snickers, no crying unless real tears." I about spit out my food at the table. From time to time I also let her help me cook. This week I learned that when cooking with Samantha one has to watch her very closely. As we were preparing the broccoli to be steamed she was assigned the role of taking the broccoli I cut from the stem and putting it in the pot. She dutifully put the first few pieces in the pot, then I noticed that she started to snack on the next few pieces (in theory a wonderful thing!). Then, as I was cutting a few more pieces for her, I noticed her starting to put her half eaten broccoli in to the pot. SO - word to the wise - Samantha will have to be watched around all raw vegetables and likely all dips :) She also warms my heart with her "thank you's." (not to be confused with my often forgotten or late thank you notes.) Samantha has really become wonderful and saying "thank you" at the appropriate time and even say's "you're welcome" if you forget to say "you're welcome" back to her. My favorite is when she thanks the garbage men for taking the trash. She stands by the window in our living room and watches as they pull up to take the garbage. She almost always announces their arrival. Then she yells "thank you!" as they drive away. I hope I never forget that. She does some of the most sweet and innocent things.

Jason and I are doing well. I will start a contract position on Monday at UPS. Monday is also the Feast of St. Joseph (so, thank you St. Joseph for bringing this opportunity forward).

Some days I wonder how much longer some of this will go on. Constantly watching Alli to see if she is having spasms. The feeling of disappointment even if she just has one or two. Setting the 30 minute timer to be sure she has kept all of her meds down. Having to readjust positioning after feeding in hopes of avoiding an episode of spitting up. There are days when it all gets old. But, just as I think to myself, and often say to God, "this is enough," well, usually then something wonderful happens. Watching Alli smile at me last night was wonderful. They are the same reassuring smiles she used to give me when she was weeks old and I used to wonder if she was getting enough to eat. I have always interpretted them as her way of telling me that everything is alright and not to worry. As I sit here, she is sitting in her yellow bed moving her arm back and forth. She rubs her face from time to time and then goes back to the toy in her lap. It doesn't mean that there aren't more challenges down the road, but for the time being, things will hopefully calm down and I know God is listening.