This Monday we will do our 3rd ear testing with Ella at Kauri Sue. I am going to try and make sure I feed her before we go in and hope I can keep her asleep. They are thinking she is failing the tests because shes awake and a wiggle worm. So if I can get her to not move hopefully this will be the last test.
We also have an appointment for Brayden this week with Kauri Sue. The Physical Therapist thought it would be a good idea to have Brayden checked also just to make sure he is growing and doing things on time. So Wed someone is going to come to our house to evaluate him and than we will be going into Kauri Sue to have his health evaluated. Brayden has always been ahead of schedule so we are not too worried. But its good to have him looked at just to make sure.
December appointments. This is where is going to get hard.
Ella is scheduled for a CT scan and neurosurgeon appointment on December 13th. This day we will look at Ella's current shunt and make sure its draining as its suppose to. We will also be looking at the fluid behind her brain to see if the shunt is taking some of the pressure off with the shunt. If the shunt is not helping the fluid on the back of the brain, they will schedule a surgery date to go in and put a second shunt on the back of her head.
Next Ella will go back to the heart doctor on December 14th. We will be doing another ECHO and seeing how things have progressed over the last month. The goal has been to get some weight on her, Dr Martin said that the more weight we get on her the better, she wont have to do open heart surgery and she will only have to block the artery with a spiral wire. If she does not gain the weight than we may have to look into open heart surgery and using a cork type of device to close the artery. If we end up in this situation it MAY cause other heart issues. Right now we are going to keep our schedule open the week of Christmas. So depending on DR Martin hopefully surgery after Christmas but before January. The only reason why we would want to get it done around those days is because both my parents are off of work and can help me out. Matt has no vacation time or sick time at work. So getting any time off is pretty much a NO. So with the help of my parents and Matts we will get through it.
Hard times have slowed down for a moment, but I know its going to be getting hard again very soon. I am just glad that we have supported Family and Friends to get us through all of this. The one that needs the most support, love and prayers is my precious miracle girl. Its amazing how strong she is and how fast she gets over things. Ella may be going through a rough patch right now, but we will get through this and she will grow up knowing what she fought when she was a baby.
I had to take this from my friends page because I believe it.
“So we fix our eyes not on what is seen, but on what is unseen, for what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:18
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