Update and announcement of upcoming benefit

One thing we have learned the hard way through our almost 17 month journey is what worked for months before can all of a sudden decide not to work anymore. As in my previous update I stated that they had placed Megan back on 24 hour drips because all of a sudden giving her 4 hours off just wasn't working. Since she has been on the 24 hour drips she has stopped the gagging and acting like she needs to throw up. She is still having some issues with pain in her tummy. How sad it is to watch her just hold her tummy and cry and you know it is from pain. But I really think that is something we are going to have to constantly work through by trial and error. I am hoping that increasing the prevacid will start helping with some of her discomfort. She was really wiped out yesterday with only being awake for about 4 hours all day.

As for my dad, he is having some problems with depression lately, which his doctor said is a part of Alzheimer's, so she has added some medicine for that and increased his Alzheimer's medicine a little bit. I am hoping to see some difference in him but she is afraid he is too far into the disease and it may not help.

We received a call yesterday concerning a private nurse for Megan. Our insurance has denied covering for a private nurse. Man, this was a let down big time. At first I wasn't really excited about having someone come in here and take care of her because I do rather enjoy being totally involved. I then realized that it would be so nice to have someone handle the medical side of things. Also with my dad being here it sure would have helped BIG TIME. I guess we are just going to have to wait until we get an approval for SSI to see if she will qualify for anything of that nature. It was really such a let down. We were really praying for some help. Now we are really praying hard that they will not deny covering her wheel chair or that we will hear something very soon about SSI.

I am going to be sending out another update in the next day or two about a benefit coming up in September for The Mitochondrial foundation. It is called Music for Megan (not our Megan but another one who is dealing with this disease) and it is going to be so much fun. I had the wonderful priviledge of speaking with Megan's mom the other day. This is going to be a very big deal and it is for research for Mitochondrials like our Megan's and many more who are out there. Anyways, I am going to get my information together and send it out to you guys in my next update.

Thank you all so much for your continued prayers and messages on the message board, once again, they are VERY encouraging so please keep them coming! God Bless!!!