Welcome to the team

Yesterday was a long, exhausting day, but progress was made. My day started off with Dr. Spector, the elusive pediatrician we've been trying to see for months, calling and asking if we could meet with him at 5:30. Hooray! Dr. Spector is a very seasoned pediatrician with tons of experience with special needs kids. In every setting, his name kept popping up as the guy to see. He's also been one of the few "best pediatricians" to repeat in the last several annual doctor polls that I researched. The only problem - he only takes newborns and we were initially turned away because Taylor was nearing her first birthday. I kept hounding him, finally spoke with him on the phone and he was impressed with our understanding of Taylor's condition and desire to help her. We played phone tag for awhile longer and I was thrilled to get his call this morning.

Then the day got interesting. Susan had moved Taylor's therapy to late afternoon (a tough time for her) and I had to wake her up from her nap to go. I had planned to go straight to Dr. Spector's office. Taylor was hungry when we got to Susan's and I was going to give her some formula in her bottle, but Susan offered a spinach souffle she had just been using in feeding therapy with her previous client. I said OK and Taylor had three small bites (baby spoon size) before clamming up. She was a little fussy when we started her therapy and I thought she was still tired and uninterested (not uncommon for her). After a few minutes, Susan asked if her face looked blotchy and within minutes her entire face was bright red and covered in hives. I've never seen a baby have an allergic reaction before and it wasn't pretty. She was totally broken out and I took her outside in the fresh air. I was trying to decide what to do and she started throwing up. The more she threw up, the quicker the hives started to disappear, so I was actually relieved. She threw up probably eight times and began to return to normal (although a sad, tired normal). I felt awful - I thought the spinach souffle was baby food (it looked like it in the dish), but it was actual food. Taylor is likely allergic to eggs or cheese......total bummer. She had a dramatic reaction to three small bites - it really worries me what would have happened if she ate the whole dish.

I felt terrible taking her to the doctor appointment, but we'd waited so long for the appointment and I thought it might actually be good for her to see a doctor, so off we went. Again, we were quite the pair - she went through two outfits and I managed to keep most of it off of me, but we weren't the cutest family by any means. We met Dr. Spector and had the most thorough doctor appointment ever. We were there until 8pm - over 2 hours of actual conversation time. He went through her history in detail and had clearly done a lot of research on her condition. He thought the absence of both the corpus callosum and septum pellucidum were more meaningful than anyone we had met with (who downplayed the septum pellucidum). Dr. Spector said lightning doesn't often hit twice and we wants to understand the root cause to Taylor's condition. He believes it may be associated with a syndrome and if we can learn more about the cause, we can get a specific diagnosis, which can help us anticipate her future and make sure we're doing the best preventive care. As David says, "He's doing offense, not just playing defense." Everyone else we had met with had downplayed understanding her condition and stressed the focus should be on her development and therapy plan. While true, we were really encouraged by Dr. Spector's comprehensive approach.

He thinks we should see a neurologist, in addition to neuro-development, to ensure that we really understand what's happening in Taylor's brain. We're so glad - this always felt like the right move to us, but Children's had pushed us to neuro-development and Dr. Dudas had followed their lead. Dr. Spector also is very interested in seeing the results of our genetics work and mentioned another speciality that takes information from genetics, combined with other data, and makes scientific diagnosis.

On one hand, it was overwhelming to relive the last year, but we feel great that we now have a "conductor" to lead the orchestra of specialists we're seeing. This was Dr. Spector's description and we desperately have needed a conductor. So, we have more to do now, but we're excited to learn more. We finally feel like we have the right team in place for Taylor.