October 5, 2011

Follow up - Duke Fragile X Clinic {answered prayers}

God's mysterious ways continue to baffle me. We waited months for the appointment to the Duke Fragile X Clinic... countless hours were spent filling out paperwork, planning the trip, and praying - lots of praying.

Well, the appointment did not go as I planned - in any way.

To begin with, Grant was battling a pretty bad cold and the appointment couldn't have been scheduled at a worst time - nap time (the time, I was told, was not negotiable for initial appointments). On top of that, I had woken up with a small headache and nothing seemed to help it go away. The headache pulsated to a full-blown migraine by the time we were greeted by the doctors.

Grant slept a short bit in Aaron's arms as the psychologist and psychiatrist interviewed us. I was praying the abbreviated nap would be enough to refresh him, but when Grant woke up he was cranky, confused, and ready to go home. As I was escorted into the adjacent room to watch the evaluation, Grant burst into tears and wanted nothing to do with anything or anyone. He sat at the table, laid his head in his arms, and sobbed. Meanwhile I was trying to answer questions from the psychiatrist and the geneticist. Several times I politely excused myself to use the restroom (to throw up - the pain of the migraine was really getting to me). As I pressed my throbbing head against the cold tile I fervently begged God to turn the situation around. I just wanted to pick Grant up and end the whole charade. This wasn't working.

As I returned to the observation room, the geneticist comforted me by saying that while they like to see children at their best it is also helpful to see them at their "lowest". And they were observing some impressive behavior.  

Huh? Impressive?

In spite of the fact that Grant was exhausted, he remained "calm" and used his words to deny the activities (meaning he didn't kick and scream and throw objects across the room). Apparently that was very notable. And they documented at how he perked up and performed well when it came to a couple challenging fine motor tasks.

Later, as the geneticist and I completed another interview (to discuss family history and such), I was warned that the final portion of the appointment would be the worst. Grant was undergoing an extensive physical evaluation and I was to prepare myself to hear a lot of crying from the doctor's office. But, as we sat and waited outside, all we could hear was talking and laughing. Grant emerged happy as could be and began running up and down the hallway. He was in a great mood and was interacting well. Everyone was very pleased with how well he handled the physical exam and I was thrilled that everyone was finally able to see the Grant we are accustom to.

As I said, God's mysterious ways continue to baffle me... but he did turn the situation around!

I am disappointed that a full evaluation wasn't conducted - due to Grant's demeanor, but I am pleased that all the specialists involved were able to gather some helpful information. We are hoping to get another appointment as soon as possible to conduct a "real" evaluation and have Grant tested for autism.

I learned these two valuable things from the appointment:
  • In addition to his other therapy, we need to get Grant as much occupational (fine motor) therapy as possible. Specifically for children with Fragile X Syndrome, fine motor skills will be a key component to ensuring a certain level of well-being/independence down the road.
  • I was informed that the autism umbrella is widening to such a degree that in a couple of years children diagnosed with Fragile X Syndrome will also automatically qualify for the autism diagnosis (I am working to get this information in writing and will pass it on to you when I have it). We have decided to pursue getting an autism diagnosis now so we can get more services for Grant.

Answered prayers (click here to read Prayer Request: Duke Fragile X Clinic):
  • Our car drove beautifully - no issues (one less thing to worry about).
  • Grant did get a good night sleep. We very thankful for that.
  • Grant is still fighting his cold though I think it was the timing of the appointment that affected his performance the most. Oh well. Hopefully we can get a morning appointment for the follow up evaluation.
  • While the appointment had a shaky start, Aaron and I both left encouraged and felt like we had some insightful and tangible ideas of how to help Grant.
  • I felt pretty good after the appointment (and after a good night sleep to get over the migraine). We headed straight to the beach for a long weekend with Aaron's family which was the perfect way to unwind. We are currently trying to figure out how to get Grant the additional OT he needs.

Thank you so much for your prayers! Knowing so many were praying is what sustained us. Thank you!



  1. Those kind of appointments are stressful. There is so much pressure for our child to perform well that I am not surprised that you ended up with a migraine! I know the specialists are used to Fragile X behavior, but it's like you've waited six months for the appointment and you want it to go as smoothly as possible. I am glad you had people praying for you. If I hadn't been so busy with IEP planning the past week or so, I might have noticed your post requesting prayer.

  2. Wow, those appointments are stressful, aren't they? Glad to hear Grant perked up for some of it anyway. I think they are prepared for kids of any and all behavior types at the clinics!

    I had not heard that soon all kids with FX will qualify for an autism diagnosis as well, that is very interesting..... I'll be looking for more about that.

    Oh and your new blog design.... beautiful!


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