A Christmas Story (A little late)

Right before Christmas, Claire had her first physical therapy appointment out here. I was grateful for the timing because Claire had taken a slight turn for the worse the few days prior, and we needed another set of eyes to evaluate her. At the end of our appointment she expressed concern over Claire's obvious lack of development and asked if I had any other appointments scheduled. When I told her that I was getting a second opinion with neurology on Jan. 8th, she said, "Do you have a minute? Let me introduce you to the  doctor." 

Excuse me? A Neurologist who is just waiting to talk to patients? I had to wait 6 months to even be scheduled for a consultation in Shreveport! And then you will never guess what happened...

 In walked our therapist with the Neurologist, the Geneticist, and a Pediatric Developmental Specialist!! We had a one hour impromptu meeting where they all evaluated Claire, I gave her medical history (they about fell over when I whipped out my email that listed Claire's 25 metabolic panels that were run!), and we discussed my primary concerns. 


 For the first time, the doctors said they agree with me. Whereas the doctors in Shreveport dismissed my concerns that she has a processing issue between her brain and eyes, these doctors agree. They informed me that they work together as a team at Tripler Army Medical Hospital, and asked if Patrick and I were open to additional testing. Um....YES!!!! 


Of course as the doctors were leaving, I was crying. I thanked them for their immense display of compassion and understanding because it was exactly what Patrick and I desperately needed right before Christmas.

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Fast forward to two days ago, our big Jan. 8th appointment, and the story gets even better. 

 First, Patrick was able to get off work, so the doctors had a much calmer mommy to deal with, which was better for all involved! We had SIX doctors for over an hour developing a complex gameplan for moving forward. Basically, Claire is still a mystery; however, based on her symptoms, the team is not convinced that LSUS was extensive enough in their testing. So, we are going to start from scratch to ensure that nothing was missed. And, these doctors are very doubtful that she is actually experiencing seizures!

The icing on the cake was at the end of the appointment when the head of Genetics asked if there was anything they could do for Luke while we were out here. I asked for a second opinion with opthamology because his eye still crosses. Then, the pulmonologist asked when Luke had his last workup (we had been discussing our hospital stays with pneumonia), and I said he hadn't had one. The doctor asked if we would like one conducted on Luke because he had worked for three years with a clinic specializing in Down Syndrome patients, and it would be beneficial for Luke to have in his medical records!

So, again, I have no idea how we stumbled into this amazing opportunity. Remember, Patrick was not even supposed to be on this deployment, let alone have this position in Hawaii. We will be forever grateful that Patrick ended up by such an amazing hospital, and that my job, daycare, and the kids' therapists all arranged for us to be gone for three months, and that our friends and family were willing to take care of the dogs and house for us so we could have this opportunity.

All I can say is that if you do not believe in miracles, simply take one look at our situation, and reconsider the possibility.