Not the First and Not the Last

Wow, this has been an incredibly busy month for us. Sophia has had several big appointments at Riley and things with therapy. We have seen everyone from eyes, ears, lungs, heart, and speech. As you know, at our last pulmonolgy appointment they took Sophie off oxygen during the day. This has been the biggest blessing EVER. She is doing beautifully. No DESATs or real episodes without it. She is doing great with the HME too. Most of the time, she doesn't even really need that. Its nice to keep it on though for protection. She has so many secretions anyway that humidity isn't an issue. The biggest blessing comes in the sense that I now get to carry my daughter freely about our house like any other baby. I can bring her room to room as I go. I can put her on my hip and leave the room without someone carrying a machine after me or dragging and adjusting hoses. It truly is liberating. We have even been on a few mommy and daughter walks. Really sweet times to cherish. Still longing for the day, I am free to drive alone with her. (this will not happen as long as she is trached). So for now, we will be showvered by daddy and Sophia and I will ride in back. With all these appointments this month, so many changes have happened and yet there are so many answered unanswered. We met with cardiologist last week. They performed and EKG on Sophia's heart. I thought they would do an ECHO but they just wanted to listen to the murmur this time. The murmur is caused by a bicuspid atortic valve. The bicupsid valve is a birth defect (heart disease) that is associated with her CHARGE syndrome. One does not have to have CHARGE to have this abnormality. Many are born with it daily and many live without knowing. In terms of the H in CHARGE, it stands for HEART. In terms of Sophia's condition she has a very mild heart condition on the CHARGE spectrum. Sophia still also has the PDA, which is a small hole in the heart. The cardiologist did an excellent job at explaining both of these to me. At the time these were discovered, it was not priority to treat due to her life-threatening airway issues. The doctor explained that one they like to give the PDA a year to close on its own. We have another appointment schedule for the end of Novemeber for an ECHO. After the year mark, they will continue to monitor it for changes. The only need to go in and surgerically repair the hole is if it would start to leak blood the wrong direction, reguritation. This could never happen or happen several years down the road. The biscupsid valve is on the main artery. Instead of having three laps to open and close the valve Sophia has two that are moderately fused together, making her atery open and close assymetrically. Again, the only need to go in and repair this valve is if the valve starts to leak and the flaps of the openning do not close properly or flip (curl inward). Again, with age and life condition this could be teens, to 20's to 30's in terms of years into her life before they need to have surgery on her heart. The idea of heart surgery still looms heavily within my own heart. No matter at what age in her life if the need should occur she will always be my baby girl and the idea of it will always leave an ache in mine as well. However, for TODAY, we are fine. Today we are OKAY. So for today we will focus. Also, last week we visited with ENT for our hearing screen. The tests they perform in office and for her age were inconclusive. The performed 3 separate types of tests on her ears. One for her ear drums, one for activity and one to show her response. Each test showed a need to further examination. They said they did not see as much activity as they had hoped in both ears. Therefore with her age and the results, they want to do a more finite test that will give us the exact results of her hearing. This test requires Sophia to be put to sleep in the OR. Due to her age and the timing and sensity of the test she needs to be put under anthesthetics for the best results. The doctor also wants to revisit her nose and look at her airway while she is under in the OR. It makes sense to do as much as possible while she is asleep so we do not have to frequent the OR three more times in the nearer future. The doctors are suppose to call me next week with a time and date for this procedure. This isn't going to be our FIRST time into the OR and it most likely will NOT be our LAST. The idea of her being put to sleep again and so soon after being home unsettles me. I know that it needs to be done and I know it is for the "best" but I think the time I start getting use to the OR is the time I loose my hope as mommy. The hearing exam they perform in the OR should tell us exactly how Sophia is hearing and tell us exactly how and what the doctors need to do to help with her earing loss. It is inevidible at this time to say she will not have ANY hearing loss. THE E in CHARGE stands for EARS and the most common symptom is hearing loss. The doctor did say the ear drums look good but he has a feeling the issues may lie within the inner ear. I know Sophia can hear some. She reacts to some sounds now and makes great eye contact and tracking. However, I am not naive to think she will come out of this test with perfect hearing. Sophia will suffer from earing loss. My prayer is that we are able to help her enough that she doesn't loss the melody and sweet sounds of the world. My prayer is that Sophia's hearing loss in minor and with proper medical assistance can be almost resolved. My prayers are many. My answers are few. The doctor isn't sure what he will need to do until he is in there and able to better evaluate her. This goes for her airway and nasal passages as well. If needed he will dilate her nose then and remove scar tissue. There should be any visible evidence of this, not like last time. The doctors will be calling me this week to set up the times and details. Next week we start another busy month of appointments with an overnight stay at Riley for a sleep study. Hopefully the results of this study will bring some wanted and much needed good news and changes. Some times I feel like there are so many things regarding Sophia's health thrown at me at once I barely have time to process it ALL. In hind sight, that is probaby for the best. If I sit and think about everything we have been through and will go through, it becomes too much, much too much. Its becoming expected. Heatlh issues with your child should never be expected. Never. What I long for now, is the unexpected good news, the unpredicted achievements. For now is the mind-numbing  "well she looks GOOD"s, the well at leasts its mild, or the  "she's ready" or the "what do the doctors know" or the "I know she will be fine"s and the "she will pull through"s. Sophia condition will never change. It is expected she is going to have issues all her life. I am accepting of these things. I am accepting these things as they come one after another after another. We will be okay. Hit after mind-numbing HIT we will be okay. We are aware of our situation and perpared to handle these things accordingly. One at a time. Like, I said with all of these appointments, we are expected news. some good and some bad. It won't be our first and it certaintly isn't our last.