Wednesday, April 9, 2014

Joy beyond measure

My heart is full. My family is growing strong, and our little girl continues to defy the odds. I am hesitant to be excited, but I am rejoicing during the good times. Life is constantly crazy, and it never feels like it's going to end. I am not sure even sure what it was like before two children. All I know is I wouldn't trade our life for anything. Yes the future is unknown, but we put our hope in God. He is faithful, and so merciful. Michael and I are beyond ready to be involved in the church community. Samuel is thriving, and adores Natalie. 

We are still doing all the usual doctor and therapy visits. We are starting vision therapy this month. Natalie is extremely lucky to have a such a great team of doctors working with her. They fight for everything she needs and more. Last month we have a team of nurses who went out of their way to make sure Natalie got her RSV shot. Words do not describe how thankful we are. She is loved, and one of the nurses always says she is Natalie Peoples... (that is the last name of her doctor). It's great knowing that Michael and I can trust their advice and direction, and that they all truly care for her.

Our trip to Portland went well. We managed to coordinate a CT, MRI, ear tubes, lower airway scope, and a sedated echocardiogram.,..and they said it couldn't be done! Things do happen when you are persistent. I am glad that Natalie shouldn't need any other procedure in the near future, outside of heart surgery. We gathered a ton of information, most of which confirmed what we already expected and knew.

Her CT showed that she does not have semi circular canals in both ears. She has chonal atresia, which will be repaired this year.

Her MRI provided a lot of valuable information about her cranial nerve abnormalities. I am not not sure how accurate the scan was, but in a nut shell the results are great. Her brain is generally normal in morphology, and signal intensity...She basically has a normal range of white matter. There is no fluid collection, or masses, and she does not have hydrocephalus that was originally diagnosed. With CHARGE syndrome there are numerous cranial nerve abnormalities, and Natalie definitely has the vast majority of them. She does not have her olfactory bulbs, no left cochlear nerves, her facial nerves, and nerves 9, 10, and 11  are  hypoplastic. She is also missing her semicircular canals (her balance organ) in both ears. I am sure many of you are asking what all of this means. Like so many CHARGE kids they overcome so many difficulties. Things that we take for granted, like walking, eating and drinking, smiling, and talking are more challenging for CHARGE kids. The good news is that they find ways to compensate. Natalie is already showing us that she is willing, and wanting to experience life at its fullest.

We recently did another hearing test. According to the MRI Natalie shouldn't be able to hear out of her left ear, but she has had responses on her ABRs. Basically, we have no idea if she may actually have a small nerve that was not seen on the MRI. . Her hearing out of her right is normal. She will continue to wear her BAHA until we have more information about her left ear. She may not need a hearing device if there is she does not hear out of her left ear. Kids with CHARGE often experience varying degrees of hearing loss throughout life. It is a constant management of their conductive hearing loss. Knowing that she can hear us is such a joy. We will continue to do more hearing tests, and decide in a few months what Natalie will require long term. Michael, and I strongly believe that it is in Natalie's best interest to learn sign as a second language. We hope that she will use both spoken and sign language.

Did I mention she is so cute in her pink helmet. She is tolerating so well, although she has not slept in it yet.  We will get her up too 23 hours eventually!.

She loves yogurt, and is slowly improving on eating. She is showing anticipation for food, which is a huge difference than the previous months. She is showing us what she can tolerate. In time she will be a fully oral fed baby!