Seven months later . . .

It’s been seven months since I updated this blog. That officially makes me slackerific! Here’s the lowdown since July:

We trialed a drug that we had reason to believe might reduce or eliminate Parker’s cyanotic spells. Instead it put him to sleep. After three weeks of a kid who could barely keep his eyes open to function we called it a day.

After Parker woke up from his drug trial something miraculous happened. He found his voice. Something clicked and he really started adding words to his spoken vocabulary. By the time he started speech therapy again in September it was remarkable to read back on his educational plan that had been written in May for an essentially non verbal child. Since then, he’s basically not shut up. His vocabulary is on par with other children his age (including important phrases like “We will, we will rock you” and “I have a great idea, Mommy!” He does have a lot of work to do with his actual speech. He often lacks clarity and that is frustrating for everyone but we are managing just fine.

Along with this vocabulary came an opporunity for Parker to articulate what he was feeling just before an episode. He was then and is now adament that he “can’t breathe.” With this, we began coaching Parker that he needed to slow down and try to breathe when he felt frustrated or out of control. In short, the number of cyanotic episodes has significantly decreased since summer. In fact, now they are almost exclusively associated with an injury. The bummer side effect to all of this is that Parker is now potty trained and since he pees every time he has an episode it causes a bit of a mess. And when you are wearing eighteen layers of clothes to sled in the back yard it sure is interesting!

While I am delighted that the episodes are now few and far between, I find myself re-sensitized to them and I have a mini panic attack during each one. I am helpless and fearful. Constantly wondering “Is this the one?”

Parker does still have noisy night breathing. In fact, the impetus for this update is our trip back to Cincinnati the end of this week. On Sunday he will go to the sleep lab for a sleep study and early on Monday morning we hit the OR (funny, kinda like “hitting the gym” in my world!) for a bronchoscopy with Drs. Cotton and Wood (ENT and Pulmonolgy).

It is possible that the time has come for a tonsillectomy. They are tricky on the reconstructed airway. But I will go into more detail if that is on our schedule for 2010.

The weather is really iffy this week but hopefully we will have an easy drive and time to go the aquarium and meet up with some friends on Sunday before the sleep study.

I will keep you posted. And I won’t wait seven months this time!

Love, Suzanne

4 Responses to “Seven months later . . .”

  1. 1 Bonnie Lang February 23, 2010 at 7:39 am

    Keep chugging! I’m amazed at the progress – what a special little boy – what special parents!

    • 2 suzanne2545 February 24, 2010 at 7:32 pm

      Hi Bonnie,

      Thanks so much for keeping up with us, especially now! I’m so sorry we were not able to make the funeral, however I really look forward to the Lang Family Reunion in July. I can’t wait to introduce Parker to you!

      Love, suzanne

  2. 3 Jennie February 23, 2010 at 4:44 pm

    Amazing how much progress he has made with his speech! Good luck next week!

    • 4 suzanne2545 February 24, 2010 at 7:33 pm

      I know, Jennie. We are amazed at his speech. We have an amazing SLT here who has been instrumental in all of this. Mama takes very little credit!

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