Megan's blog update

Here is the update that we put on Megan's blog yesterday. It includes a couple of things I left out of my post.

Well, it has been a while. There has been a lot going on but it doesn’t seem like anytime to set down and type out an update. It is our absolute favorite time of the year! Although I kind of wish we could get back to the colder temps here. Don’t get me wrong the weather has been beautiful but there is something about it being 77 degrees in the middle of December that doesn’t seem right? Anyways, our house is decorated and has been for many weeks now and the kids are loving it! Most importantly they are BIG TIME excited that it is almost Jesus’s Birthday, which is the reason for the season!

Now, onto Megan. She has had a lot going on lately so I am sure I won’t remember everything. Tomorrow we will get our paperwork filled out to see if we can get more hours for our nurse. I certainly hope so. Our nurse is just phenomenal! She is pretty sure we can get more hours approved through insurance because of Megan’s issues so we are praying very hard for that. We never really realized how much goes into taking care of Megan because you just get used to it and it doesn’t seem like a big deal. Once you see someone else do it then you really realize how much goes into it. She worth every single bit of it though. It is so nice having a nurse here though. And when she is not here I find myself second guessing a lot. Do you know what I mean? When she is here and Megan has some issues, it is just like having my own doctor right in my own home (yes that is just how good our nurse is) and she tells me exactly what is going on with Megan. When she is not here and something happens I really miss having someone here to help and give me reassurance. Like today for example, this has not been one of Megan’s best days at all. What we were afraid of seems to be happening because of her dysmotility. Her GI doctor had to once again increase her medicine to help her potty. It seemed to work pretty well for about a week and know we are starting to have problems again. Today she has been in so much pain she can’t even go to sleep. She said we will have to call her GI doctor tomorrow and see what the next step will be for her. She just can’t keep going on like this because it is way too hard on her little body.

Last week we had an appointment with her ENT. For those of you who do not know Megan has had tubes put in and her adenoids removed. Well, a little while back they did a hearing test on her and she did not do well. They needed to repeat the test again, which was last Thursday. She, once again, did not do well and they are almost positive she needs hearing aids. They are going to run one more test on her but she said it appears to be a nerve problem which will be progressive. It was a little sad because that is one more piece of equipment on her but then again, if it helps then we are thankful for it. We knew she had some issues but didn’t know it would go this far. A couple of weeks ago Megan went in to the doctor because of a cold and he said she had tonsilitis for the who knows how many times. Right when he was getting ready to look at her ear, all of a sudden her ear drum busted and blood went everywhere. Her tube that was in there also came out. He thinks that there was a scab in there and when it busted it tore it off as well. Anyways, the onset of that pain was so awful for her that she screamed and literally started foaming at the mouth and her head was shaking. The only good thing is that once it busted, it probably helped a lot with relieving the pressure. We just could have done without that kind of stress on her. On Thursday her ENT also wants to talk to us about removing her tonsils. This is something we have been putting off for a while as well. The problem is that she constantly keeps having tonsilitis or strep and her tonsils are full of little ulcers. It would be easy to take care of except they are very nervous about doing that on her because of her issues and her disease. We are praying about what to do because it is a very difficult decision to make.

Megan has been having a lot of trouble with collecting acid in her muscles. Her test results for her Mito doctor showed that it was very high and you can tell. Her little legs hurt her so bad sometimes and her hip will frequently give out on her. Right now the only thing we can do is massage her and making sure she stays in her wheelchair to help her rest and stay comfortable, per her physical therapist. Nothing better for a princess than to get a massage every day. The only problem is sometimes her muscles hurt so bad that she doesn’t even want to be touched and just moans in pain. Her mito doctor said that as of right now she is not eligible to take any other meds because of her condition. So we will just keep massaging her and making sure she keeps well rested.

You know, there have been three children, that I know of, in the last few weeks that have passed away from this disease. Please pray for these families, especially during this time of year. Some days, Jim and I are faced with the reality of Megan and her disease and it just slaps us in the face. However, our Megan is still here with us and God has blessed us more than we could ever deserve. So may we focus on the families that have lost their children and pray they will find some peace and know that one day they will be able to see their children again. What a blessing and honor to serve such an awesome God! The one and only God! God Bless you guys. I will try and update on Thursday after our appointment. Have a blessed week


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JR