Philosophy

Today I told my mom, "some days (today, for example) I feel like I'm living a college philosophy thesis paper."  The premise for my statement came from the end of a broadcast I was listening to on the way in to work.  Yes, a few times a week I listen to EWTN on the way in to work.  In fact, I made Jason renew our previously free Sirius subscription just so I could listen to EWTN.  Anyway, the topic of today's discussion was the HHS mandate and the requirement to provide free coverage for prenatal testing.  A seemingly innocent enough offering, until you start to examine some of the statistics associated with the outcome of prenatal testing.  First of all, prenatal testing does not just cover screening for genetic abnormalities.  I will acknowledge that there are several beneficial outcomes from prenatal testing, including glucose screening for gestational diabetes, tracking fetal weight, etc.  However, it must also be acknowledged that one of the most negative outcomes of prenatal testing is the decision to terminate pregnancies where there is the possibility of genetic abnormality. So, I am not going to get on a high horse about abortion. Thankfully, Jason and I never even had that discussion. But, when I look at our experience with prenatal testing I struggle with whether I would do it again. We can't forecast and prepare for everything. Certainly we can prepare ourselves for some things, but not everything. And so, I sort of find that at times, I resent what the testing didn't show. I was prepared for heart issues and down syndrome,but seizures and brain damage have thrown me for a loop. And isn't it that way with all children? So, all of your genetic prenatal testing is normal, but then your child develops an illness, or has an accident, then what? I almost feel like dealing with the unexpected when you have no expectations is far easier than dealing with the unexpected when you think you have the blueprint laid out in front of you. So, I'd like to say that I wouldn't do it again. I'd like to say that this experience has taught me that we are in this to be parents to whatever kind of child we are blessed with raising, that the peace of mind that everything is "normal" is in fact temporary and limited. Only time will tell.

Alli is doing well. She has had a busy couple of weeks. She finally met with the infamous Dr. Jeannie. Some of you may remember Dr. Jeannie from an earlier post. She is a developmental pediatrician that specializes in Down Syndrome and she consulted with me by email the weekend Alli was initially admitted for her infantile spasms. She has been an invaluable resource to us, especially where referrals are concerned. I also feel that she is the one physician that looks at Alli globally. Our pediatrician has made it very clear that he can only deal with general pediatrics - coughs, colds, strep throat, etc. our specialists are good for their specialty but can be guilty of tunnel vision. So, I view Dr. Jeannie as Alli's personal Dr. House. We left our visit with a referral to a pulmonologist, sensory therapist, ear, nose, and throat specialist, and speech therapist. Pulmonology and Sensory were the immediate to-do's. ENT and speech are intermediate to-do's.

From a general development perspective things are going well. Alli is rolling from her tummy to her back and she is transferring objects from hand to hand. We continue to work on supported sitting and head control. She abandoned bottle and spoon feeding with her upper respiratory infection, but did manage to take some applesauce off of the spoon earlier this week. We met with the feeding specialist who feels that once we have her more medically at bay that her oral feeding skills will return. So, we will continue to try to feed her by mouth and be thankful that we have the feeding tube to supplement her for both nutrition and her meds. We are seeing lots of smiles from Alli these days. They steal my heart, even when they are followed by a spasm. We continue to struggle to control her spasms. It seems based on her personality and developmental progress that the hysparrhythmia has not returned, however, she is definitely still having jerks that resemble myoclonic seizures. We increased her dose of topamax this past week and will increase it again next week in the hopes of getting that under control. Alli will have a 48 hour eeg and sleep study April 25-27. This should hopefully give us greater perspective about her seizure activity. Next week we have an appointment with GI, PT, and OT. We also have a meeting with our new Service Coordinator from Babies Can't Wait and we'll have a developmental assessment done on Wednesday (yeah!!). I am very excited about our new service coordinator.

Everyone else here is doing pretty well. We enjoyed our visit with my parents and Aunt JoAnne. We also enjoyed a visit with Uncle Tom and Aunt Linda. We had a Sunday dinner the likes of which I wish I could have every weekend. We grew up with family dinners at my grandparents, or having grandparents at our house, and I miss that. So, to have all of that family around my dining room table was so awesome. To have Aunt JoAnne here was humbling. Though we are in different stages of life, we share much in common. She brought me a book "Jesus Calling." It has daily reflections. She told me that at times it felt like it was speaking directly to her. I have to say that I share that same sentiment. Each day I read a reflection and follow up with my novena to Padre Pio. Both have been sources of inspiration in terms of lending perspective to day to day life in our house. We had a nice Easter. Our friends John and Valerie joined us for brunch. Later in the afternoon Samantha and I had a date at Peachtree Dekalb airport. She has been obsessed with planes, so we visited the playground near the airport so she could swing and watch the planes take off and land. She also enjoyed her Easter basket and Easter egg hunt. Her dad (the Easter bunny) lovingly (and skillfully, I might add) hid her eggs in the front yard. She was super excited to open them and discover her treats - underpants, cheddar bunnies, and gummy bunnies.

We look forward to visiting with my cousin Angela and her husband Steven tomorrow and Raylene and Len Yarnell on Wednesday night! Alli also has her first play date tomorrow...yeah!!

Have a great weekend!