3 years ago
Friday, February 08, 2008
We have had a very full schedule the past 2 weeks and there is more to come. Last Monday I took the kids to their "wellness" appointments. Della weighs a whopping 18 lbs! To quote Amanda "Hey, somebody has to be in the bottom 2 percentile." Both kids got shots and Archer only cried for about 30 seconds. The pediatrician was concerned about Della's tonsils being so large and he wanted us to go back to the Ear-Nose-Throat (ENT) doctor. Now, you may recall that Della had her adenoids removed recently, as in 7 weeks ago recently. I was sick to my stomach thinking about going through another surgery, I seriously felt like I was going to have a nervous breakdown. Well, we met with the ENT the next day and he stood by his recommendation of not removing her tonsils. When a surgeon says that a surgery is not necessary, I believe him.
On Monday we had an evaluation with the developmental specialist and it went really well. Della is improving, slowly and steadily she is making progress. She is now more willing to put weight on her legs, and she can get into the crawling position on her own and rocks a few times before her shoulders give out. She has also been making more sounds and it has been so wonderful to hear her sweet voice. The discouraging news about her progress is that she is still unable to sit up. I have talked about this with our Physical Therapist (PT) at great length. I think that Della is unable to sit up because she has reflux and it is aggravated when we put her in a sitting position. The only time she spits-up is when when she is sitting upright and I think she doesn't try because it is uncomfortable. The why is more complex. There are many potential causes for her particular reflux, the foremost being simply that she has low muscle tone (hypotonia). The hypotonia affects all muscles from the legs and arms, to the face, to the esophagus. Maybe when she sits up, the weight of her trunk and head puts too much pressure on her stomach, which is weak to begin with, and she spits-up. I don't know, this is just my own uneducated guess. This is a good segue into talking about Della's eating delays. She still only eats Stage 2 baby food. There can be no texture in the food whatsoever otherwise she will gag and throw up everything she has just eaten. Then there is the danger that she could choke or aspirate the food and that could develop into pneumonia. No good. So Della went in for an Upper-GI on Wednesday. This is not a pleasant procedure to have done. First up was "barium swallow" portion of the procedure. They strapped her down and squirted barium down her throat while taking a series of x-rays of her swallowing this disgusting chalky liquid. Barium shows up clearly on x-rays, so the doctor can really see every part of the swallowing process. It is fascinating to watch on the screen, but Della didn't find it that interesting. From what little I know about swallowing, I thought it looked OK. I guess we will have to wait for the Dr. to call. We can then take these results to the CHOC Feeding Clinic and they can better assess her needs.
On Thursday our PT came for our hour long session, and Della purposely clapped her hands when we were playing a game. I can't tell you how awesome it was to see her interacting. FINALLY! So that was very exciting.
Up next is an appointment with a Pediatric Neurologist. After waiting 4 months for an appointment at CHOC, we finally gave up. A big thanks to Brian and Allison who used their connections to get us in to see a Pediatric Neurologist next Tuesday. I am looking forward to this appointment. Since we still don't have anything definitive as to what is causing all of Della's delays, I am always anxious to have someone else's input. I have to remind myself that there probably won't be a whole lot he can tell us right away. We had the MRI done in August, and there were some sketchy areas, but no one had an answer as to what that means. It has also been suggested that Della is suffering from "absent seizures." It pretty much sounds like what it is, a person having a seizure but without all of the convulsions. The person just sort of "zones out" for a second or two. The only way to diagnose this is with an EEG. That's where little electrodes are placed all over a person's head. Amy told me about the book Jenny McCarthy wrote on her autistic son. Her son had had a few "standard" seizures in the past and he was going to have an EEG performed. After being hooked up for an hour or so, the test was over. McCarthy was a little disappointed that they weren't able to see one of his seizures. She brought this up with the Dr. and he said something to the effect of "Oh we got plenty of data. Your son had almost 40 seizures in the space of an hour." Shocking, I know. So you can understand why we are anxious to have the EEG done.
So that's where we are for now. A lot going on. On top of all of this we are putting our house on the market this week. We have a million little things to get done around the house and I somehow have to keep everything immaculate and disappear when people come over to tour the house. Hmmmm. Not sure how this is going to all work out. Anyway, this has gone on long enough. I'll post after our Neurology appointment.
PS I have "My Shepherd Will Supply My Needs" playing as a small tribute to the passing of President Hinckley. There is nothing that I could write that would be worthy of describing great life that he lived. He was truly a giant among men.
Posted by Caitlin at 11:05 PM