Wow. It's been way too long since I've updated my blog. I have no excuse except that I have been pretty busy and overwhelmed---and when I feel this way I tend to withdraw and isolate. I guess this also extends to blogging as well! I know I haven't been as active on Facebook, Twitter and dailymile as I usually am too.
We got some exciting--and bittersweet--news about my daughter, A. She is graduating from two programs that she has been in virtually forever: nutrition clinic and physical therapy!
A has been seeing a nutritionist every 4-6 weeks since she discharged from the NICU at age 12 weeks. Because she had a g-tube practically since birth, and she has always been on the low side for height and weight (typically in the 3rd-5th percentiles) we had to go in to see a nutritionist at Children's Hospital often to do weight checks. She would adjust A's feedings according to her weight (ie adding more Pediasure, taking away a bolus, etc).
We last saw the nutritionist back in May, a few months before A got her g-tube removed. Yesterday we went back for one final weight check. A is in the 6th percentile for height and the 12th for weight! She hasn't had this much meat on her bones in years...and it's all her doing, all oral eating, obviously, since we no longer have the tube (and in fact, she hadn't used the tube since July 2009, a full year before getting it removed!) She told us that A has graduated from nutrition clinic. While I am ecstatic about this news, it was bittersweet, as we have been seeing this same woman every month for basically 4 years. We have developed a relationship with her, seeing her so often, so we both had tears in our eyes as we hugged goodbye.
Right after our nutrition appointment, we went to our weekly physical therapy (PT) session, also at Children's Hospital. We were told that we are being discharged from PT! Now that A has met her big goal--walking up a curb---our therapist feels comfortable discharging her. This is so shocking---A has been in PT since she was literally one week old! Physical therapists would come to work with her during her 12 weeks in the NICU! So the thought of being discharged at age 4 1/2 is fabulous---and scary.
Of course, A will still be receiving services and doing things to boost her gross motor skills. She will continue to have PT through our school district (she gets 30 minutes one-on-one once a week) and that PT has no intention of discharging her for several years, as she wants A to be completely playground- and school-safe first. A also get an hour a week of adapted P.E. through the school district. Additionally, she is also in ballet and horse therapy once a week. And I just found a developmentally appropriate gymnastics class (!) that is in the same time slot PT used to be, so I'm going to sign her up for that to continue building her skills. So with all of that going on, I'm comfortable ending the hospital-based PT, and it IS appropriate to have her do something more community-based instead. However, just like with our nutritionist, we have been seeing this particular PT since A was one year old....every week for 3 1/2 years. It will be sad not to see her anymore.
Again, I am very comfortable ending both the hospital-based PT and the nutrition clinic. I am actually over-the-moon happy, as it means that my baby girl is thriving and flourishing. But it's hard to say good-bye to professionals with whom I have built relationships, and who have been so instrumental in my daughter's success.
Ambassador Spotlight: Sheri Carey
6 hours ago