Megan Update

What a week! It seems like it has been one thing after another. We started with a lovely day of Megan leaking out stomach acid and what appeared to be potty and various other things that made all of us gag. We then received Megan’s blood tests back that revealed that her levels had once again changed pretty dramatically in just a month. Megan is a bit anemic. Right now we are going to watch her very closely but if it continues then they will most certainly have to take action. Megan has been taking a medicine for her lactic acid build up but based on the latest blood work, her lactic acid is worse now than it was before she even started on the meds. There were many other levels that were way off but I am not sure what they all mean. But basically they all have to do with her disease. Her doctor said that her body is desperately trying to fight her mito disease. It is so very important that we keep Megan healthy because it is hard for mito kids to fight the disease and an infection. That is why the disease progresses when ever they become sick. We also found out that her reflux has kicked up into over drive. She is once again, totally raw from the bottom of her esophagus all the way up. Her ears are filled with fluid that is caused by the reflux and her adenoids have grown back. So, they have had to max out her reflux medicine to where she is getting the maximum dosage for her weight. They are going to go in and replace her tubes and remove her adenoids again and do a special hearing test while she is asleep. That should take place in the next couple of weeks. Ian’s adenoids have grown back for a third time so they are going to try and operate on the both of them on the same day. Believe it or not it will be much easier that way. Praise God for our wonderful nurse who is going to go with me that day and help so we can tag team them.

Tomorrow we go to the cardiologist and hopefully he will have some information for us. I guess if you can be excited about seeing a new cardiologist, I am excited to see him. We have just heard some amazing things about him. There is so much more information but it is just hard to go through it all on email. Put it this way, it has been a long week. Megan was up a lot last night choking. We are pretty sure it is from her reflux.

Hey, I’m just going to be totally honest with you guys, ok? Do you know what I do sometimes? I totally forget that I cannot control this and I think that I can cure Megan myself. I selfishly take the focus off of God and place it on myself. Thankfully I have a Father that gently reminds me that He’s got this. It is hard thing to deal with day in and day out. When you are constantly reminded of a disease your child has and how much trouble she is having but yet she looks so good, well, you can easily get discouraged. Here is another piece of info for you about me, just being totally honest, right? Sometimes I pray selfishly too? Can you believe that? I didn’t realize it right away. Once again I am reminded that it is not about me. I am reading 3 wonderful books right now. I am taking my time with each of them but one of them is about prayer. Jim and I have had some amazing prayer time lately. We took the focus off of ourselves. I love it!!! I have really changed my focus on praying for not only Megan but Jim and various other issues. Prayer is an amazing thing you guys. God knows our heart so there is no point in hiding it from Him, you know? So I guess my point is that even though things have been pretty rough lately with all the information and stuff, we have been able to have some wonderful time with our Heavenly Father without having any focus on ourselves. How amazing is it to truly pray unselfishly. I don’t know if any of this makes sense but I really felt I had to share.

Please pray for our appointment tomorrow and please pray for Megan to remain healthy and the reflux would subside to help ease all the pain. God Bless you guys and have a wonderful week.

JR