2/21/11

Just a quick update. Things aren’t working out as well as we had hoped. Maggie is continuing to use the pedialyte to make more bacteria. We spoke with the doctor and he has told us that Maggie is so critical right now. To even have a chance at getting her a little more comfortable we will need to stop all food and pedialyte. So she can only have water for the next 24 to 48 hours. Then we will go from there to see what might need to happen next. Maggie has started to get swollen feet and legs and intermittently has it in her face. He let us know that this was not good at all. He is very concerned but says that they have done what they can for Maggie along with the other hospitals that we have been to. Nobody has been able to come up with anything else to help her this is just what the disease does. He said that it wouldn’t be humane to put her in the hospital at this point unless it was just because we just couldn’t care for her end of life because there is nothing that they could change or would do differently. He thinks she absolutely should be home right now spending some time with us. He said that at any point she will tip and everything will go off balance and he thinks that this could already be happening because she is getting so swollen. All of her doctors have been discussing what else if anything could be done and agree that she is just too severe and that there is just no way her stomach is going to ever start to work again when looking at how severe everything is on the x-ray. We can only hope for a miracle right now and that is what we are doing.

We are waiting to have a meeting with another of her doctors to see about setting up hospice and to just go over everything and make sure we are absolutely doing what is best for Maggie.

To answer some other questions about Taveons swallow study and how the doctor thinks he may have mito from that study. The reason why he suggested that is because Taveon has low tone and its showing in his swallow study even. He does not swallow like a normal person and also when things are going down the wrong tube he does not react. He can’t even feel that this is happening and is very weak at getting it out if he does at all. So with this info plus all of his other history and Maggies diagnosis this is why he says that it looks like mito.

We have also received some results from Atlanta today from the blood work that the other two had done. Taveons tests came back looking very similar to Maggies. This is just the blood work and urine, he did not have a muscle biopsy. His lactate levels were extremely high which is not good. He also had a few other things that were not great. They are suggesting that he have a muscle biopsy because he has so many symptoms and so many other tests that aren’t good.

Hailey's tests were not as severe but they did recommend having another test (which I can’t remember which one it was ) done to see what it shows. She did have a few things going on but they are not as sure with her like they seem very certain with Taveon.

All of these things are very devastating to hear. With getting these results and dealing with what poor little Maggie is going through we are really struggling. We are hoping to have Hailey and Taveon meet with child life at the hospital to discuss all of these things going on. Sadly we have been putting this off when we should have done this before now. Its just so hard to accept that we really need to be doing this right now.

Maggie is such a strong little girl and has touched so many people in her short life. We hope and pray that she can be comfortable in the time she has remaining. She is loved so much!! We appreciate all of the really nice supportive comments. It is helpful to read about all the people who are praying and thinking of Maggie and to see how many people who care about our little girl. Thank you so much!! Please continue to keep her in your prayers, that she may be comfortable.

Thank you also for all of the dinners people have been bringing over and the gifts for our kids. We really appreciate everything so very much!!