Tuesday, November 3, 2009

Day +40 (A lull ...)

Hunter's first full week out of the hospital has been slow compared to what we have been used to the past seven weeks. Today he had his third outpatient clinic visit. I heard Hunter referred to as "Mr. Personality" while we were waiting for our appointment, which made me laugh out loud. He certainly is excited to be free of his hospital room and is as talkative as ever. Hunter understands English and French, but has spoken predominately English until recently. Now he says hello and goodbye, counts, exclaims, excuses himself and asks several questions in French, while referring to women and men as Madame and Monsieur.

We learned from Hunter's Nutritionist that he is exceeding his calorie intake goal, including protein and calcium goals. He is also very close to meeting his fluid intake goal, but will remain on nightly IV hydration. The team will reassess his need for this at Friday's weekly IVIG appointment. We would love for him not to be hooked up to an IV during the night, but understand his body is working extra hard to flush out all of the medicines he is taking. The best news of all from today's appointment is Hunter's platelet count is 74,000! Although, unintentionally we were brought back to Earth when a Physician's Assistant mentioned we are a little over a third of the way through our post transplant time in Seattle if all goes well. A third?! Really?!

Hunter's schedule is going to quickly pick up though. He was evaluated by a Physical Therapist yesterday. He begins twice weekly visits the week of the 16th until our undetermined return to L.A. Next week Hunter will meet with an Occupational Therapist and a Speech Therapist to be assessed. Occupational and speech therapy could possibly add another two to four appointments to Hunter's weekly schedule. A busy schedule will get no complaints from us though. We look forward to getting Hunter as healthy and fit as we possibly can before returning home.


  1. Retour au blog d'Hunter après quelques jours en Bretagne, loin d'Internet...
    Je suis aux anges de constater qu'Hunter progresse sur la bonne voie, qu'il est bien entouré, de bons soins et d'amour...
    Nous aussi, nous lui envoyons tout notre amour et plein de bisous d'outre-Atlantique !

    Sylvie et les garçons

  2. Good good news !!! With that busy schedule time is going to fly and you'll wake up soon in your castle with the 2 Hs :)

  3. Wow, sounds like Hunter is doing really well and I am happy to hear his platelet count has improved so much.

  4. Hello. I just found your blog via my friend Teresa Ygniez. My son also had WAS. He had a BMT in Aug 06. He now has chronic skin GVHD. I hope to take more time to read your blog.

    Would you mind if I posted a link to your blog?