Saturday, August 21, 2010


Lily's been a very busy girl since we brought her home!  After we've cleared up her infected throat & ears, she's been doing great.  She's still not much for drinking, but she's definitely getting better about it.
  • Dentist - 1 cavity, needs thorough cleaning; will do under sedation this fall.  She wasn't thrilled about this visit, but she let him look in her mouth.  She HATES when I brush her teeth - she prefers to do it, but then she's really only brushing her tongue.

  • ENT - some concerns about tonsils, they are HUGE ... just watching them for now.

  • Audiologist - hearing is GOOD!  Yay!

  • Cardiologist - we knew Lil had an ASD (hole) that was repaired.  She apparently also had a VSD (hole in a different place) that healed on its own, probably when she was a baby.  We didn't know she had a valve repaired (stitched) during her surgery, and this mitral valve has a bit of back flow.

    What does that mean?  For now, she looks good.  She had an EKG & an Echo (she's such a trooper & good listener!)  The cardiologist started her on a low dose blood thinner, to help the blood flow easier, with the goal of preserving the life of that valve.  Otherwise, in the future (5, 10, 20 years) she may need another operation to repair or replace that valve.

    We really lucked out that there are pediatric cardiologist locally, and they're very highly regarded by parents we know.  Way back when we first committed to Lil, a friend of mine connected me to Dr. S via email, and she was wonderful about answering my questions as best as she could.  This heart stuff is all new to us, so any extra information was very valuable.

  • Physical Therapy - Lil is very, very flexible, there's a lot of laxity in her.  She's got flat feet, and gets around just fine, but she's not super steady.  The PT recommended we get supports for her feet that she can wear in her shoes - so far, so good.  We've got them, and we're working on getting her used to them, but that takes getting her to keep her shoes on!

    It cracks me up to think that the first time I took her shoes off in our apartment she kept putting them back on ... now I can't keep shoes on her!  When I buckle her into the van, before I close the door, she's got her sandals kicked off.

  • Eye dr - when we first met Lil & started visiting her, Brian told her, "You're going to look so cute in glasses!"  She's noticeably farsighted - turning one eye in when she tries to focus.  Yesterday, my mom & I brought Ruby & Lil to the eye doctor.  Ruby was fine & doesn't have to go back for 2 years, but Lil got a prescription for glasses & will go back in 6 months.  Hopefully we'll get to order new glasses for her early next week - an eye doctor office in a nearby town carries the Specs 4 Us which is a line of glasses specially made for people with DS, so we're going to check those out.
One of the best parts is we were able to do all this locally so far! 


  1. I LOVE the specs4us as far as fit. The ONLY problem we've had with them is the little nose pads keep falling off. And once those tiny CLEAR things disappear, well it's a lot like loosing a contact! UGH! Now, Angela has THREE pairs of specs4us (cuz she's a diva...and because I know how she is about "hiding..I mean loosing glasses so I wanted to have spares around) and we have the same problem with all 3 pairs. When she went to Easter Seals camp in July, she lost one of the nose pads on the way to camp, so was without it that entire week, and her nose had a really bad, raw sore when I picked her up. They had tried to stay on top of it but only so much you can do with metal sitting on the skin. So, that's my ONE complaint about the specs4us. If the office that carries them is close by, and easy to get to if you need to have new ones put on, then great. But if it's a pain to get to, I say go with plastic frames. I think we're going back to that. Notice in the pictures I have posted today Angela is in her plastic frames? Cuz all her S4U nosepads are gone and I haven't had time to get new ones!

  2. Great news! Yay, Lily! And local's good too. :-)

  3. She's just amazing... and I'm so glad everything has checked out well. Glasses are fun, but then we're partial. :o)

  4. You will have to let me know what you think about the glasses. I have such a hard time finding glasses that fit Liv and are durable enough to outlast Taylor... She has had them for three years, but five pairs. Now she won't leave them on because they don't fit right... sigh, let me know!

  5. We love our Specs 4 Us. I can't believe how much longer Annie will wear her S4U glasses! She now goes almost all day. We had so much trouble with the regular frames, the lenses came out and they lost their "fit" every other day or so. I am happy that you have a local shop. We order ours directly from Maria at S4U. She is wonderful! Good luck with them and don't be discouraged when she hides them 14 times a day. Annie about killed me with that phase. ;-)

  6. Fist I must say that your daughter is a doll. I read your blog and look forward to seeing that adorable face. I have a daughter (bio) with DS and she is the light of our lives. I am going to look into those glasses, as we have a terrible problem with them slipping off her face all the time. Thansk for the tip~