We got to spend 10 days with Amy and Aubrey and had such a great time.  We have also made two trips to Birmingham.  One was for Dad and the ...

Things have been really busy since my last post.

We got to spend 10 days with Amy and Aubrey and had such a great time.  We have also made two trips to Birmingham.  One was for Dad and the second one was for Madison and Dad. 

I will post pictures from Amy and Aubrey's visit very soon.  Since I haven't updated in SO LONG, I wanted to give a quick update on Madison and post a few videos. 
Madison had her six month check up last week in Birmingham.  She saw her genetic, cardiologist, and pulmonary doctors.  I am very happy to report that all three of these appointments went great. 

Her cardiologist has been monitoring some thickness in the aortic valve for two years now and has seen no changes.  He was confident enough to say that he felt comfortable moving Madison to 12 month check ups instead of 6 month.  I however, was not that confident.  My reasoning behind it was because all the other I-Cell children see their cardiologist every 6 months and there is a reason for that.  Even though Madison's heart is looking great, if something does get worse I want to catch it early.  Luckily, the doctor said he would do whatever makes us happy so we are staying with every 6 months.

Madison's pulmonary appointment went well also.  Our pulmonary doctor has been wanting to do a sleep study on Madison for about a year now and Shane and I haven't agreed to it.  She has already had 3 of them.  With the first one, to our surprise, Madison did great.  The second one, not so much.  At the third one, as we arrived at the hospital and got checked in, I decided not to put her through it, so really she has only had 2. 

At the first sleep study it was determined that Madison needed oxygen at night.  She initially started out at half a liter of oxygen but she is now at one liter. We have the pulse ox machine that alerts us if Madison's oxygen levels or her heart rate drop at all.  She doesn't sleep with the pulse ox every night unless she is sick.  The pulmonary doctor is concerned about Madison having high CO2 levels.  She isn't showing any symptoms of having them but he does want to monitor her levels every year which can only be done by a sleep study.  We have agreed to do a sleep study in the spring but it is still early.  I am going to do a lot of research and ask the other parents of I-Cell children and then decide if we need to put Madison through it. 

All of Madison's appointments were on last Wednesday.  Dad had his appointments on Tuesday.  He had a CT scan and blood work done that morning and then we met with the oncologist that afternoon.  We learned that the tumor that extends from his liver into the lungs and heart has shrunk a little.  The bad news is that there are new lesions on the liver.  He was able to get another chemo treatment and will go back in 3 weeks for another treatment and then another CT scan 3 weeks after that.  We are hoping and praying that we receive good news at that appointment. 

I'm sorry that the blog has been put on the back burner here lately.  Our plate has been full.  With Madison and me being in for the winter now, I should be able to post more regularly.  Thank you for checking in on Madison and keeping her and our entire family in your thoughts and prayers. 

I have taken several videos but wanted to get these two on the blog.  Since we aren't able to get Madison out, we have been watching our church services online.  To say that Madison LOVES the music is an understatement.  She dances like crazy when we are watching the music portion of the service.  This video was just too cute not to share.