The appointment Tuesday afternoon with Ruby's dietitian went well. Basically we had to go over everything that Ruby eats; they wanted to know what kind of formula she drinks, how much she takes in a feeding, how often she eats, what brand of baby food she eats, what meds she is on...etc. They take this information, along with Ruby's weight, and they set up a diet for her, calculating how many calories and fat Ruby will need to have each day. It sounds like she will be allowed to have a few bites of applesauce for her meds, two snacks of pureed vegis and then about 24 oz of special formula each day. It will be better for her to be able to take this food at schedule times throughout the day so we are going to work hard at getting her on a better schedule. That gets tricky when she sleeps at random times because of her meds, but she is getting better at that.
The dietitian confirmed that we will admit Ruby to the hospital at 9am on Tuesday morning. We can feed her regularly until then and when we get to the hospital they will wean her on the new formula by mixing it with her regular formula at first. Then they will monitor how she does for a couple of days. We were told that kids on this diet have a high risk of kidney stones so they will run tests to check her kidneys and monitor her blood sugar levels. If she does well, then we should be able to go home after 3 days (Thursday evening??) but they told us to plan on being there a little longer because sometimes kids don't tolerate all the changes well at first. Her ketones have to be at a certain level before she can leave also.
We were told that about a third of kids on this diet become seizure free and another third see a large reduction in their seizures. The diet doesn't seem to affect the last third of kids. We are hoping we are in the third that sees no more seizures! It could take time for us to see results. I would love to leave the hospital seizure free, but I think that is very unlikely. Often after a month or two of tweaking the diet, kids see better results.
Well, that is what we know for now. We are looking forward to a relaxing weekend with Ruby before next week. She has been fairly smiley and she is swallowing so much better so praise God for that. Thanks again for your prayers!
8 comments:
Kelli, it sounds like you are understanding well what is going to happen. I am praying that Ruby is in that first 1/3 group as well. Enjoy this weekend and know we'll be praying for all of you next week!
I do hope this diet stops those seizures immediately. Thanks for keeping us updated...
Kelli, will continue to pray for little Ruby and that she falls into the third of kids that goes seizure free!!!!!!
Praying for little Ruby's seizures to stop completely. Also praying for baby #2.
Wow, Kelli, you guys have a lot going on. We will be praying for a very relaxing weekend for you guys. I wish we could visit you guys next week. I can't imagine how hard it must be to be in the hospital and such. We're praying for you and especially for little Ruby that she takes to the new diet like a champ!
Praying for little Ruby!!
Our prayers will be with you and Ruby throughout this process. May this be the time that we see the seizures decrease and then disappear. Hear our prayers, O Lord.
Thinking of you all today!! Praying all goes well!!
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