Tuesday, May 18, 2010

Kaela's progress

Once again, I've neglected the blog. Life has been so incredibly busy the last three months that I just haven't found time to get on here and post anything. A lot has happened since Kaela's fusion and decompression surgery 12 weeks ago. She was put in the halo and was scheduled to be in it for 3 months. She was due to come out of it the first or second week of May. Unfortunately, we had a lot of issues with the halo, or rather, Kaela had a lot of issues with the halo. Her Orthopedic surgeon and Neurosurgeon both told us that her bones are much different than the average person, or even most kids with dwarfism. They had never had such a problem putting a halo on someone as they did with Kaela. Her bones are very soft, so when they originally put the halo on they tried it out in many spots before finding the right spot. The first several tries ended with the pins slipping through the bone. They also had problems with the pins clicking into place, so they didn't put much pressure on them (to avoid having them go through her skull). About 5 weeks after surgery Kaela started to scream and cry that it hurt every time we put her on her back or sometimes when she sat up. It was horrible hearing her cry out that we hurt her. We knew something wasn't right, so we called and scheduled an appointment to see the halo docs. It turned out that she had 2 loose pins, both on the left, one in the back and one in the front. Kaela had 3 pins in each site, for a total of 12 pins. Her Neurosurgeon felt okay taking one pin out of each site since she had so many pins in already. They took out the two loose pins and we went home. She was feeling much better the next day having those loose pins out. About a week and a half later we went in for a regular check up with the halo docs and found out that she had several loose pins. They can't leave less than two pins in each site, so a lot of times if one comes loose they just re tighten it, or put another pin in. Because of the problems with Kaela's bones already, they didn't feel comfortable adding more pins or tightening existing pins. Instead, they decided we should just take the halo off. They felt that having had the halo on for half of the desired time was good enough for them. They took the halo off in less than 10 minutes, while Kaela was awake. She was NOT happy about that, but the pins were all so loose that it wasn't as bad as if they were tight. If the pins were tight, they would have put her under general anesthesia to take it off. Kaela has been a MUCH happier girl since the halo came off and is back to her typical self. Even her Neurosurgeon commented on how different she at one of her appointments. With the halo on he'd come in and she would be very quiet on my lap and just overall not happy. This time he came in and she was chatting up a storm and let him pick her up and put her on his lap with no complaints. She told him about her stickers and everything.She was in a neck brace for a couple of weeks, but since then she's been free of everything. We have gone in for several check ups and xrays since it came off, and so far everything is doing just what it's supposed to do. The last visit, just about a week ago, they said it looks like there is some bone growth where they did the fusion. This is great news. It's healing up from what they can see. She has an MRI in 2 weeks just to confirm that it's all healing well. We are so happy that with all the problems and complications, it all turned out okay. I was so worried when they took the halo off early that they'd have to re do this surgery because she wasn't secure. So far, there's been no concern for that, which is wonderful!Kaela's back to bossing everyone around and running the show. Sometimes when her and William play I have to tell her to stop throwing herself on the couch, because I'm so worried about things staying in place, but it doesn't seem to faze her at all.