I get this question a lot now and I'm never really sure how to answer it. I usually say "fine" or "they are doing well", but that's not really the truth, is it? However, I certainly don't want to make someone endure the long, hard truth of the reality of our life now. I don't want to get into the in's and out's of the disease, the damage it has done so far or the damage it will do in the future. So here is the real answer to "how are the boys?" if you care to read on:
My boys "look" healthy. They talk and run and play and act like boys. They played soccer this fall and love to ride their bikes, but there is so much going on in their little bodies on a cellular level - and damage is being done little by little, day by day.
What has Sanfilippo done to Jarod already?
- Many ear infections as a baby (had tubes placed)Asthma (starting at age 1 1/2)
- Moderate high-frequency hearing loss (he wears aids)
- Speech/Language delays (recent testing is already showing the start of decline here)
- Cognitive Impairment (his IQ used to be 68 or so, now we are looking at high 40's)
- Growth retardation (He has fallen steadily from 50th percentile for height to 25th to 10th to 5th and now below 5th over the last five years)
- Liver and spleen enlargement
- Thickening in one wall of his heart
- Behavioral issues (aggressiveness, tantrums, HYPERactivity)
- Joint stiffness and pain (we're already noticing that running seems to be more labored for him)
- Obsessive tendancies (he has a thing for books right now...he's in and out of the library at school many times during the day and has bags and bags of books that he puts together around the house)
What has Sanfilippo done to Caleb so far?
- Moderate high-frequency hearing loss (he was fitted with aids this summer)
- Speech delays (much less severe than Jarod at the same age, but there is already a gap between his expressive and receptive language) He is now starting speech/language therapy.
- Some hyperactivity (although, again, not as severe as Jarod - now or or at the same age)
Jarod keeps us busy. Once he's up in the morning he is non-stop until he goes to bed. He is into everything. Some days I think his little brain just needs to live in chaos. He dumps toys out everywhere, throws games and dvd's all around like frisbees, writes on/in things he shouldn't, tears pages out of books, makes a mess with food and drinks, etc. It's a full-time job cleaning up in his wake as he goes through his day. Caleb doesn't share these tendencies, thankfully. He's my kid that loves to play the Wii, read books, do puzzles, use his imagination with his Playmobil toys, create things with Play-Doh, etc. He just acts like a bouncy, smart five-year-old.
So...that is "how the boys are". :) Even with the delays and health issues that Jarod has experienced already, we are constantly reminded that, in the context of Sanfilippo, our boys are doing quite well at the present. They talk to me every day. They laugh every day. I get hugs and kisses every day. For that I will remain thankful. And I will continue to just take each day as it comes.