It has been a relative quiet week for our Hero Willem.
Much tweaking of his feeds, IV fluids, etc. He is actually up to 100/110 ml of special formula and is tolerating this very well.
He is keeping up with his school work through the help of Susan Meltzer, a teacher at Meadowbrook Elem who has been volunteering her time to come to the hospital twice a week and work with Willem, and Sarah Smith who is the hospital education in house teacher/coordinator. Both of you have been such an important part of keeping Willem at least close to his classmates. Thank you both!
Saturday Willem spent the afternoon at a friends house playing all things Pokemon, Harry Potter, DS, etc. Sunday he went to church and spent the afternoon at his own house with Mom, Wyatt and Lili. All in all a great weekend.
We are waiting for the lab results to come back from Cincinati Children's Hospital. This is where one of the two foremost experts on HLH lives and practices. The pathologists there have been working with this doctor and are very tuned into and familiar with HLH, what it looks like under a microscope etc.
Willem's major medical problem is the stricture (blockage) in his small intestine just below where the stomach empties into the intestine. A few different options are being discussed, one of which they are continuing to do with greater intensity and that is through attacking the stricture with medicine dosage increase. This would be the "easy" solution.
He look great, feels good most of the times, is walking laps in the hospital, and overall "getting better".
Prayers are being answered and he still have some hard work in front of him so pleas don't stop now!
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
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