Tuesday, July 31, 2007
Wednesday, July 18, 2007
Diagnoses
We've had a very eventful couple of weeks.
Last week we went to the Henrico Doctors' Developmental Follow-Up Clinic for an evaluation. We normally only go every 6 months, but I had some concerns. Aerin isn't hitting some milestones on time or at all. Although she understands everything we say to her, she isn't talking. She also won't feed herself (though she's demonstrated that she can) or scribble with a crayon. She FREAKS OUT when you brush her teeth or wash her hair and she refuses to let you guide her hand. I thought that she might be a little slow or maybe not that bright. I still feel very guilty about that. It turns out that Aerin is perfectly bright - she has a condition called Sensory Processing Disorder. SPD is a spectrum disorder that affects the way the brain interprets the information that comes in; it also affects the response to that information. This is almost certainly the result of her extreme prematurity - her central nervous system had to function before it was fully mature. Dr. Brown told me that almost all of the micropreemies and a goodly number of regular preemies she sees have some degree of SPD. Aerin is fortunate not to have a lot of the more extreme symptoms and should do very well with therapy. She will be going to both Occupational Therapy and Speech Therapy and the doctors are very optimistic that she'll have a successful outcome.
Although SPD (sometimes called Sensory Integration Dysfunction) is often associated with Autism, Aerin does not have Autism.
We also went back to the plastic surgeon, Dr. Pozez. She was very happy to see how Aerin has grown and how clean the ulceration on her hemangioma is. She was able to tell us that she almost definitely can do a skin graft! That was a big relief. She also said that even if Aerin does need a VAC*, she'll train us to do it ourselves at home so that Aerin doesn't have to stay in the PICU an extra week.
Aerin's MRA has been scheduled for August 9th. Her surgery will likely be in the early fall.
Aerin has mastered all of the shapes in her shape-sorter, which Dr. Brown was very impressed with. For some reason, the triangle took her the longest. She got the star right away, which is much harder, but that's so Aerin. She is also a whiz with puzzles and regularly does ones in the 2-4 age range.
*VAC is short for Vacuum-Assisted Closure, also known as negative wound pressure therapy. It promotes the formation of granulation tissue in the wound bed. In this system, a special foam dressing with an attached evacuation tube is inserted into the wound and covered with an adhesive drape in order to create an airtight seal. Negative pressure is applied and the wound effluent is collected in a canister.
Last week we went to the Henrico Doctors' Developmental Follow-Up Clinic for an evaluation. We normally only go every 6 months, but I had some concerns. Aerin isn't hitting some milestones on time or at all. Although she understands everything we say to her, she isn't talking. She also won't feed herself (though she's demonstrated that she can) or scribble with a crayon. She FREAKS OUT when you brush her teeth or wash her hair and she refuses to let you guide her hand. I thought that she might be a little slow or maybe not that bright. I still feel very guilty about that. It turns out that Aerin is perfectly bright - she has a condition called Sensory Processing Disorder. SPD is a spectrum disorder that affects the way the brain interprets the information that comes in; it also affects the response to that information. This is almost certainly the result of her extreme prematurity - her central nervous system had to function before it was fully mature. Dr. Brown told me that almost all of the micropreemies and a goodly number of regular preemies she sees have some degree of SPD. Aerin is fortunate not to have a lot of the more extreme symptoms and should do very well with therapy. She will be going to both Occupational Therapy and Speech Therapy and the doctors are very optimistic that she'll have a successful outcome.
Although SPD (sometimes called Sensory Integration Dysfunction) is often associated with Autism, Aerin does not have Autism.
We also went back to the plastic surgeon, Dr. Pozez. She was very happy to see how Aerin has grown and how clean the ulceration on her hemangioma is. She was able to tell us that she almost definitely can do a skin graft! That was a big relief. She also said that even if Aerin does need a VAC*, she'll train us to do it ourselves at home so that Aerin doesn't have to stay in the PICU an extra week.
Aerin's MRA has been scheduled for August 9th. Her surgery will likely be in the early fall.
Aerin has mastered all of the shapes in her shape-sorter, which Dr. Brown was very impressed with. For some reason, the triangle took her the longest. She got the star right away, which is much harder, but that's so Aerin. She is also a whiz with puzzles and regularly does ones in the 2-4 age range.
*VAC is short for Vacuum-Assisted Closure, also known as negative wound pressure therapy. It promotes the formation of granulation tissue in the wound bed. In this system, a special foam dressing with an attached evacuation tube is inserted into the wound and covered with an adhesive drape in order to create an airtight seal. Negative pressure is applied and the wound effluent is collected in a canister.
Sunday, July 01, 2007
Update
Aerin's Uncle Daniel is visiting and she has really taken to him. She even pulled off his glasses and gave them to me after a half-hearted attempt to put them back on him. She loves to take off my glasses and try to put them back on my face. Luckily I have good reflexes or I'd have been stabbed in the eye many, many times.We went out to supper and then to Huguenot Park, which is very close to our house. They have a fantastic playground, the nicest I've ever seen. Aerin mostly just wants to walk around the path that circles the playground (but is inside the gate). She did follow me up 3 "stories" of the playground apparatus. Andrew took her down a slide and she wasn't impressed. I think she'll have more fun as she gets used to it.
Aerin has developed some eating quirks which have made mealtimes twice as long. First, she will only tolerate 2 pieces of food on her placemat at a time, max. Any more than that and it will all get swept onto the floor. Aerin either eats what we eat or baby food. The other night she ate an entire meal of roast turkey breast (which I cook often - it's so much easier than cooking a full turkey) and steamed green beans piece by piece by piece by piece. My meal was ice cold by the time I finished, because Aerin fussed if I didn't keep the pieces coming. Then, yesterday, she refused to eat steamed carrots, which I know she loves. So I had decided to let it go when a dog fight scared her. I took her on my lap and she started scarfing down the carrots (her bowl was in front of me). As soon as I put her back in her seat, she refused the carrots again, so I held her until she'd finished them all.
Yahoo Photos is closing, so we are switching all of our photos to Flickr. You can find our photo album here. It's going to take a couple of weeks for the transfer to complete, so don't worry if you don't see very many photos at first.
I want to thank everyone who emailed me with offers to donate blood to Aerin. We've had to keep ourselves so isolated that it's sometimes hard to remember that there are so many people who love our family. Y'all are wonderful, we're very blessed to have you in our lives. Aerin's blood will be supplied by Virginia Blood Services. They don't take out-of-state donations and there's a lot of hoops to jump through for a directed donation.
Lastly, Aerin weighed in at a whopping 26.5 pounds! The nurse was so surprised that she weighed her 3 times to make sure. Aerin is just very, very muscular, which is why she looks much smaller than she is. Dr. Haynes was very happy with her weight, so it's nice to know that we've done exactly what we were supposed to.
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