Taken while waiting for her MRI. She loved rocking. Guess What she's getting for her birthday??
Sierra had a MRI and three doctor appointments last week. Her MRI was first and it went REALLY well. They didn't have to incubate her so when she woke up her throat wasn't closing off like it usually does. She was hungry and mad which is always a good sign :)
A few hours later that day she had a hearing test done to see how her ears are doing with the ear tubes that were replaced last month. She didn't pass . . . either ear. I was surprised; but when they tested her to see if she responded to the sound of voices she passed that test. We aren't really sure what to make of this. Her left ear tube was clogged which can cause hearing loss but her right ear was not clogged. Right after the hearing test we met with her ENT. When he walked into the room he asked if I had talked to anyone about her MRI, which I hadn't. He then stated, she has a tumor which is blocking the fluid from draining. When I heard the word tumor I was horrified and a little confused. He also told me at this time that he was able to see her cochlears which are slightly miss shaped and he didn't know if this was going to effect her hearing or not. He then looked at me and asked if I understood. I responded by saying "so she has a tumor somewhere on her ear which is making it so the fluid can't drain out of her ear?" He said No which I responded, "I don't think I understand". At this point he finally sat down and looked at me. He said "She has a tumor on her brain which is blocking the fluid in her brain from draining. The tumor is on her brain, not her ears." Brandon was not with me, he couldn't come down this time. I didn't know what to say or do. I was not expecting anything like this at all, especial from her ENT. I literally said to myself count to 10. 1 . . .2 . . . 3. . . breath . . . 4 . . . 5 . . . and on until I gained control of my emotions. He was her ENT so he couldn't answer any of my questions or tell me what we were going to do so I pushed it aside while I sat through the rest of the doctor appointment. He cleaned out her tubes and looked at her ears. He did notice that her throat sounds really rough right now and was a bit concerned. He said to come back in 6 months to have her ears checked if there are not problems . Come back in 6 weeks if her throat doesn't sound normal again.
After I left I walked outside of the hospital and called Brandon. I almost didn't tell him about the tumor because I literally had no information and her appointment with the neurosurgeon was the next day; but I couldn't hold this kind of information inside so I called him and when I started to tell him what the ENT said I couldn't get it out because I was so emotional. He was upset and decided to come down for her appointment with the neurosurgeon. Needless to say I was a wreak the rest of the day. In fact so much so that when I stopped to get us some dinner I accidental left the keys in the car and locked it. I had to call 911 to have an officer come and unlock my door. It was a horrible day and I don't think my eyes were dry until I finally fell asleep that night. About 8 pm I received a phone call from my grandfather who was in the lobby of the hotel with my Uncle Max. They asked if they could talk with me. My mom had called them and told them I could use a blessing. I felt slightly embarrassed because I was still very emotional but I was so grateful. Not just for the blessing they gave me but for the love I felt. It is VERY hard for me to go to the doctor appointments alone but when I receive bad news alone I become very emotional. In my mind I was thinking about Sierra dying because brain tumors rarely ever turn out OK. In fact, my next door neighbor's daughter died of a brain tumor. During the blessing my grandfather said over and over and over that the Lord knows who I am and knows our situation and loves me and loves Sierra. He knows us and has not forgotten me. I really needed to hear this because there have been many times during the past two years when I've wondered if the Lord has forgotten me. After the blessing I felt so uplifted and I knew that I could handle whatever we were going to face but most importantly I felt like everything was going to be OK. I am so grateful that my Uncle and Grandfather took time out of their busy schedules to come to my aide.
Brandon met me on my way to the hospital the next morning. When the neurosurgeon came in he cut right to the chase and told us that Sierra has an Arachnoid Cyst on her brain which is blocking the fluid from draining which is causing her rapid head growth. Brandon nearly started jumping for joy because it was a cyst NOT a tumor. But the surgeon wants to drain the cyst as soon as possible. He said it was rather large and he was very surprised that she's not effected by it. He was acting surprised that she is moving, crawling, and happy. We told him that we have a family vacation we were going on next week. He was hesitant and then said, "well lets get a list of children hospitals in the area just in case anything happens." At that point I decided that we were going to have to postpone our vacation to my parents house. My older kids are soooooooo disappointed. Kaylie cried about it for days. The surgery is scheduled for July 8th. Sierra needs to the at the hospital July 7th for blood tests.
After this appointment we met with her eye doctor for the post surgery check up. He said that it worked perfectly. Her eyes are working together now which is what he was going for. He told us that now her eyes will start getting stronger so over the next long while they will straighten out. I was so happy to hear this. We are noticing that her right eye is getting stronger every single day.
I have been on a lot of ups and downs over the past week. When we came home after all the appointments I kind of went into a depression. I was just so, so, sad about the arachnoid cyst, even though I'm happy it's not a tumor. I also feel a lot of guilt for not taking her in sooner. The doctor said that surgery only works about 50% of the time. Best case scenario Sierra will be in the hospital for 3-5 days after surgery as long as there are no other complications. He said that this is a long process and that surgery is the first step. I felt weird being around other people because I felt like my life had come to a stand still. I felt like my world was spinning but everyone else's world wasn't. I felt like there was a big elephant in the room that no one would confront. I tried to act normal but I had a really hard time being normal. I still get emotional when I tell others, but I'm doing so much better now. Partly because I am reminded over and over how amazing Sierra is. Seriously amazing. Brandon is also wonderful for me. He's such a rock. When we thought she had a tumor he told me at one point "I want to raise her. I don't care that her life will be harder, I want to raise her." I don't know very many men as wonderful as Brandon. I am so lucky to be married to him. When I told a friend of mine about Sierra she put her arms around me and instead of telling me "I'm so sorry" she told me "I know you can do this because you are so strong and Sierra will be OK. She will be OK." I love her for that. I get so tired of hearing "I'm so sorry". I hate feeling like others pity us because we don't pity our situation at all. In fact I didn't want to tell anyone at first because I didn't want to see the pity in their eyes. I don't want them to become uncomfortable and not know what to say so they just don't talk to me anymore or go way. We love our Sierra, we wouldn't change a thing. Yes it's sad, yes I'm mad sometimes but not for myself. I'm mad or sad because of what Sierra has to go through or what she misses out on but really in the end she comes out on top. She will never be a dancer, a beauty queen, or a Val Victorian BUT she is so happy, so loving, and so beautiful. She's already perfect and some day when this superficial world is gone her body will become perfect, just like her spirit. She has changed me forever. She has changed my whole family forever. Who wouldn't want an Angel living with them?? Elder Holland once told some friends of ours that " 'these' children personally escorted Satan out of Heaven". She must be pretty special. I am so blessed.
Please Pray for Sierra and that her surgery will go well. Pray so she can come home quickly.
