Thursday, March 21, 2013

another cystinosis appointment with dr. nelson

Next week Lars will be eight months old.  He is doing just fine.  Our one concern is that he dropped from the 94th to the 70th percentile for length and from the 80th to the 56th in weight.  This wouldn't concern most parents because he's still a pretty big boy.  However, getting a kid with cystinosis to gain weight (or even eat a chip) is incredibly difficult sometimes.  Luckily Lars likes food.  I just fed him two bowls of rice cereal, a jar of carrots and a jar of squash.  Now he's eating puffs.   Tonight I'll add butter to his puffs.  We'll get him back up to speed.

Also, renal function levels still look perfect.  There is nothing about him that might suggest he has a disease.  Blood work and growth look great.  When Sam was at this age he was falling lower and lower on the charts,  his head was too big for his little body, he wasn't standing with help, he gagged every time he saw a puff, and he was drinking water excessively (and then he'd throw it up).  

This whole early diagnosis thingy is really working out for us. 

On a dimmer note, Dr. Nelson says Sam will most likely need his kidney transplant while he's in high school.  We have been PERFECT with his medication.  I NEVER miss a dose.  I haven't accepted this yet.  I'm probably in denial but I think Dr. Nelson is wrong.   Naivety is bliss so I'll just waltz for a few years.


  1. Ahh, Lars looks so cute with hair:) I'm glad to hear he is doing so well. And about Sam, it's just a doctor's guess. No matter what happens, you and Stephen are wonderful parents doing the very best you can. Love you!

  2. Lars is ADORABLE! I am so glad he has been doing so well. He is so lucky to have you for a mama!

  3. Your baby is beautiful, and your pictures are gorgeous! We're excited to see you guys in two weeks!!
    I will give Sam a kidney any day. :)
    You two are remarkable parents!

  4. Couldn't agree with Morgan more. No matter what happens, you guys are great parents and Sam is lucky to have you there by his side! I can't believe how cute Lars looks! If it helps, even Bennett dropped from the 90th-75th percentile around 8/9 months (and I think Elsie will be doing the same when I take her in next week). Lars looks so squishy, I just want to snuggle him!

  5. Love that boy...and the rest of you too of course. Gorgeous photos Ashton. Doesn't seem naive at all. Just optimistic which is what you should be. Hope for the best and deal with the worst if you need to but enjoy every moment until then.

  6. Teach me how to photograph so beautifully, please???

    And I agree with everyone else, you are the best mom those boys could ask for. I am in awe of how much you're able to accomplish and how steadfast you are with everything.

  7. thank you everyone for the kind words.