Note: I spent a while writing a post and then lost it during the posting process...a little frustrating! Hopefully I remembered to include everything in the replacement post below!
Sounds like a pretty horrible combination doesn't it? Well, its all HAPPENING at the same time, but are not necessarily related! Bean has had one tooth in the side front of her mouth for a while - we have taken to calling her snaggletooth because of it. But, she is now getting a few molars in the back and it has definitely been a bit of a pain for her over the last week. Luckily she has not run any fevers and has only has had a slight runny nose for a couple of days. So, overall it has not been too bad. But, she has definitely been more moody and has not been sleeping all that well. All of her teeth are one side of her mouth right now and they aren't really lined up at all, so chewing is an issue for her. The order in which her teeth are coming in is also strange - usually kids get their front teeth first. But, post-transplant Bean was on Cyclosporine for anti-rejection medication. The medication has a number of side effects, which includes thickening of the gums. So, this could be the reason we aren't seeing any other teeth yet - a mom on one of the transplant email lists I'm on said it took her son nine months after getting off of Cyclosporine for his gums to recede enough to see his teeth (they were there, just under the thickened gum). So, hopefully, we will see more teeth soon. She came off of Cyclosporine in late October/early November. It would be nice for her to be able to chew her food!
And hopefully she will start getting more excited about the prospect of chewing food! The GI docs put her on an antihistamine to stimulate appetite, but it doesn't seem to be helping with her food intake. For a while, she was a pretty good eater - she liked cereal (both baby and Cheerios), sweet potatoes, carrots, yogurt. And she ate pretty good two or three times a day. But, she has now started to refuse to eat from a spoon. Finger food only. Which would not be bad if she had teeth to chew the finger food, but as it is, she eats very small pieces, very slowly and often tosses many pieces over the side of her chair to our dog. So, her intake is not very much for each meal. Because I don't know if this is just a phase she is going through or some oral aversion she has developed, I have requested an occupational therapy evaluation from the regional center. Her cognitive therapist says she definitely has a slight tactile sensitivity. She gets anxious when she is on grass because it pokes her, she refused to touch a spiky gel-type ball toy the therapist brought a couple of weeks ago and she HATED pudding painting because of the pudding on her hands. I figure its worth getting her evaluated to make sure there isn't some aversion we should be dealing with early on. Luckily she still loves her bottle and drinks formula well, so she gets plenty of calories and nutrition that way. And she is still small enough that her drinking a bottle doesn't look ridiculous. But, at some point, I would like for her to be eating more food and drinking less formula! Really, we are lucky considering she was on IV feeds for most of her first six months of life. A lot of heart kids have to keep feeding tubes in because they don't adjust well to eating after so many months without it. But, I would feel even luckier if she were eating food better!
Finally, her feet. Don't worry - they have nothing to do with her food! She just took her first few steps the other day and I thought I would include a short video! Enjoy!