On March 10 all of Maria's therapists and her babysitter met to discuss Maria's progress. At this meeting I told them of Maria's diagnosis. They all continue to be very supportive. I think they were relieved to hear why Maria's progress has been so slow and were also glad that they were all on the right track with her.
I was finally able to call Maria's pediatrician to tell her that Maria has CdLS. She immediately went to work in making sure that we had referrals wherever we need. On Friday March 19 we took Maria to a cardiac specialist for a cardiogram. We were able to see all four chambers of Maria's heart from different positions. I wish we had brought the camera. The nurse wanted to show Maria the "gooey" stuff for the ultrasound, so of course Maria immediately put it in her mouth. Then she just started rubbing it all over her chest and stomach. Maria was very wiggly, but every time we reminded her of the "gooey" stuff she was content to rub her hands in it! It appears that Maria's heart is fine. We are so thankful that we can cross that off our list of possible issues that she might have. Not only that, but we did not even have a co-pay for this appointment. We continue to praise the Lord for his provision in our lives!
This Thurs. March 25 Maria has an Upper GI appointment at our local hospital. I'm not sure what that entails, but hopefully she will be compliant during it. Depending on the results of that test we will know if we have further testing locally, in Rochester, or if we're finished testing. Then that afternoon we head to our local audiologist to see if she can make a different kind of ear mold to hold Maria's devices into her ear a little better. We are forever putting them back on her head. She does not like to hear! She thinks she's going to win this one, but we are going to find a way to keep those things on her head! It's our lesson in patience I think. Good thing she's a cutie!
Then next week we head back to NYC for an update on her cochlear implant programming. We're just making a long day trip out of it. She has one appointment at 2pm with the audiologist and one at 4pm with the surgeon for follow-up. We'll keep you posted!
Thanks again for all of your support. We're so appreciative of your prayers, e-mails, and calls.
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I'm glad to hear her heart looks good! That is always reassuring. Good luck with your other appointments. We are having issues with our regular hearing aids. It drives me crazy how long the process is to get the issues fixed. :)ReplyDelete
Thanks Heidi. I did read that it's difficult to keep hearing aids on kids. Maria's devices have two parts--one around her ear and one that sticks to her head with a magnet. She keeps pulling the magnet off, which is what transmits the sound. If the ear mold change tomorrow doesn't work, we're thinking of buying a cute tiny hat or bonnet that will hold them to her head---of course then I'm thinking she'll untie the hat:)ReplyDelete
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They reported that her speech had improved considerably, but that it was still very slow. Her APGAR score showed "fair" and the instruction and play areas were clean, so they informed Maria's parents to discontinue washing in the diaper area; they said she wouldn't need a nappy anymore any time soon. Additionally their evaluation revealed internal decision-making difficulties: Although mentally three years old at least (according to her kindergarten teacher), if encouraged to choose things Maria would state "wakie" or similar words, and her therapist believed that these were a means to avoid making decisions.ReplyDelete