9 Months

So, I have decided that I am done searching for ways to 'fix' Abby because every time I think I have figured out what the problem is or found the right doctor to ask, I always get the same response "We'll just have to wait and see." It happened again this week with her neurologist. I took her in on Monday for her 9-month follow up. Can you believe it has been 9 months already? Crazy! I wanted to see if he had any ideas as to why she can't smile or talk and I also wanted him to figure out why she doesn't sleep. Let's start with her face: he said her brain took a major blow. She had a massive bleed and she was very lucky to have survived it in the first place (obviously we know that and are very grateful that she remains here with us). But he explained that because the surgeon removed part of her brain tissue along with the AVM, it has most likely left some fibers and nerves that are in need of remapping themselves in order to work properly. Will they ever do that? He couldn't say for sure (actually he told me not to hope for a 100% recovery and said I couldn't set my expectations that high.....silly man). But he did say that he has never had a patient who suffered any type of cerebellar injury that did not regain their speech, at least to some degree. The area of the brain that controls speech was completely unaffected. Her bleed was in the cerebellum, which controls motor skills. So until those nerves get straightened out and she regains the fine motor skills needed to move her face and tongue, she will be lacking any type of formal speech. He said she is in for a long haul and will continue to need a lot of therapy, but only time will tell. Now let's move on to the sleep issue. Abby only sleeps 4-6 hours at night and naps for one hour (sometimes less) during the day. When I brought that up, he told me not to let her nap. Umm....that's impossible. When she is falling asleep nothing will stop her. It happens in therapy all the time and is so frustrating. But the neurologist said either way, she can survive and recover on 5 hours of sleep. At which point I asked, "Ok, but what about me?" Seriously. Again, he blamed the issue on the fact that her brain was injured and just needs time to heal. Will she ever sleep again? We don't know. I agreed with him that it would not be favorable to put her on some type of sleep aid. I don't want more medicine. I've tried lavender oil and benadryl with no luck (the benadryl was while she was sick). So he suggested melatonin, which she was taking in the hospital and it did no good. But we will try it again. Surprisingly, after hearing him tell me that she can do just fine with 5 hours of sleep, I have been feeling more refreshed and less tired myself, with only 5 hours of sleep. Interesting.

It is fun to see the real Abby poke through from time to time. One day during physical therapy this week she was on a swing. Usually we have her sit or let her lay on it. But this particular day she decided it would be better to stand on it. So, while sitting, she grabbed onto the ropes and pulled herself up to stand. That's not easy to do on an unbalanced surface! But I can just see her trying to do that anyway. Why should I sit when I can stand? So much fun!

One morning after she had breakfast it was time to go get Spencer up. We heard him talking and I told her we were going to get him. I went in the other room to put some things away first when I heard a door open. Abby had crawled to Spencer's room, pushed open the door, and when I came in, I found her kneeling beside the crib with her arms through the slats trying to get her brother. Spencer was laughing. Precious. She always liked standing on the bottom ledge of the crib to peek in at him when he was a tiny baby. She loves him so much!

And apparently, the kitchen floor is a pretty cool place to lay down. This was not an uncommon sight this week. But I can't figure out why she does it! The tile is so hard and uncomfortable. Maybe she's hot? I don't know...

We also found out this week that Abby has another UTI. Anthony and I had been wondering for a few weeks but weren't sure. I didn't want to take her into the doctor unless I was positive she had one because the only way to get a sterile urine sample from her is by using a catheter. She has had that done so many times already and it is SO uncomfortable, so I didn't want to put her though it for no reason. But we were pretty sure about it so I took her in on Monday. Abby is much stronger than she was the last time she had one, and she put up one heck of a fight. It took 3 of us to hold her down (semi-unsuccessfully) while the nurse tried to insert the catheter. Poor Abby. She was squirming so much that the catheter kept slipping down out of place and the nurse had to use 3 different ones before she finally got the sample. I honestly never want to do that again. It was ridiculous for everyone involved. And afterwards I was sick to my stomach when the the nurse suggested that Abby has had this infection for a while. It would be so much easier if she could just tell me that it hurts when she pees. But instead I am left to guess about *EVERYTHING* because she is too stuborn to use sign language or any of the other communication devices we've tried so far. There is no reason why she can't do those things. She just won't. I am waiting for her urologist to call me back to see what he wants to do now. He had her on a daily antibiotic for 3 months to prevent any more infections after her last one cleared up. But it was shortly after we stopped that medication that we began to wonder if she had another one. We've done all kinds of tests to figure out why she keeps getting these infections, but everything always turns out normal. Her anatomy is correct, her bladder functions properly, and the urine flows out the way it should. So basically it is a mystery. Hmmm...what else is new? Ha! He will probably have us start her back up on that daily antibiotic again. Darn.