Yay my pictures worked. I hope you all enjoyed those. Well I took the suggestions of someone that commented and I emailed Oprah. I will paste in my letter at the end of this post.
Donations now are $6,950.34 yay! I was talking to Yvonne and she gave me a few more ideas. So I am going to write up a speech and then ask my pastor if he’ll let me speak to the congregation. I’m going to write the newspaper and TV station as well.
I know there was more I wanted to say in here but now I can’t remember. I hate when this happens! Oh yes, Ann with NF2 I’d love if you could contact some people in Jonesboro and see what they have to say. Just in case you aren’t reading this anymore I’ll email you.
Please please please someone buy some shirts. Pretty please? Yvonne sent them all the way over here and no one is buying them and I payed a lot of money for shipping too. She donated these shirts out of the goodness of her heart when she could just sell them herself and use for her medical expenses. So please…… the shirts.
Isaiah is just playing in his play pin, squealing at God knows what…but as long s he’s not crying that’s fine with me!
I called St. Vensents today to see if they have received the screening form I filled out. I want to see if I can make payments on this or do I absolutely have to have it all up front. The lady was kind of rude and kept wanting to know my account number. I told her I didn’t have an account there because I hadn’t had the surgery yet. Finally got that through her head and she said she must not have gotten it yet. But she should have. I mailed it over a week ago and things don’t take that long here in the states.
I also purchased a pocket talker. It’s a personal amplification device. I have trouble hearing people now. It’s like a pager, has a mic and you were the earpiece so you can hear people better. I hear the voice but have a hard time understand it. Also bought a amplifier device for my phone since I am having trouble on the phone sometimes now. Mainly if it’s a female, I get so irritated because I can’t understand what she is saying so I just give the phone to Edward. It should be here by Monday so I’ll let you all know how that works for me. I’m just tired of missing everything. It’s been raining and storming and I can’t hear it. it’s crazy. The only things I hear are the ringing/roaring/crickets in my head and things that are close by. Makes me sad that I can’t hear the rain and only know it’s thundering if I feel the floor. I have to hurry and get this implant before it’s too late. 
Ok here’s the letter I sent to Oprah. Tell me what you all think of it and I hope all of you are doing great and take care.
Dear Oprah,
I want to spread awareness of my condition, so that others diagnosed with it may be encouraged to seek treatment. I was diagnosed with neurofibromatosis type 2 (NF-2) at the age of 13. This is a condition in which the patient has tumors on their spinal and/or cranial nerves. Blinded by brain tumors and deafened in one ear, my residual hearing is fading, too. One of my tumors is growing and is tangled up in the 8th acoustic nerve, the nerve that deals with hearing and balance. The tumor needs to be removed, because if it gets too big, I can lose my hearing or the added pressure on my brainstem could eventually kill me. The real kicker is that there is no hope of saving my hearing if it is removed without an auditory brainstem implant. I have a husband and a 7-month-old son, and nothing is scarier to me than knowing I can lose what’s left of my hearing. I pray that I will be blessed to hear my baby through his growing up years.
Because I am already blind, losing my hearing would be devastating. I depend on my hearing to help me live as normal and productive a life as possible. I am now working to raise the funds required for the auditory brainstem implant, which will help me preserve some of my hearing when the tumor is removed. Every doctor I have called has given me trouble about performing the surgery, because they don’t take out-of-state Medicaid, and that is all I have and no one in-state does the implant. I saw a doctor in California who was kind enough to waive his fees for me, but that leaves me with hospital fees and the price of the auditory brainstem implant to come up with on my own. This has been a discouraging process, and I have to keep reminding myself to live day to day.
Though your interest in my story won’t ensure the success of my treatment, I am confident it will help raise awareness for NF-2 and possibly help me acquire the necessary funds for the implant. Thank you for letting me share some of my story with you.
Sincerely,
Holly Alonzo
I am going to try to post some pictures in this post, so bare with me. I’ll come back later with an update. But let me know if these pictures worked.
Hey hey! Spring is here and it’s making everyone sick. Plus there has been this horrible bug going around and it seems like people are just passing it back and fourth. It goes from being beautiful one day to cold and rainy the next.
Donations are $6,702.09. Yay! Yvonne sent me some more shirts so I will be getting some smalls and medium.
I got the MRI that Dr. Friedman wanted. I sent the films to him and he called me Thursday. I couldn’t find the phoen and called him back but he was goign out of town. So I called him today and he was very busy but still made time to answer my questions. He said that the left schwannoma is a little over 3cm now. I said, “How much of a little are we talking?” He said, “not much.” So I said, “like 3.1?” he said, “hmmm…yeah 3.1ish but not quite” Also h e told me that the right schwannoma is still stable. Then I asked him if different MRI machines could give a slightly different reading. Like I usually get my MRI done in Little Rock. This one I had done here in Piggott. He said that yes it can be off by about 1mm. So September was 2.9cm and this one is 3.1ish cm and if the machine could have been off by a mm then it didn’t grow very much at all. that is great news. But the hearing is still slowly dropping. Also the tinnitus is sooooo loud! I wish there was a way to make it stop. Sometimes it is so loud that it is hard to concentrate on things. I also asked him about the ABI. My first brain surgery went in the back on my head on the right. So I have a scar there. My friend just had surgery yesterday at TN and he was going to get the ABI as well. But they told him they couldn’t do it because he had too much scar tissue back there. So I was worried that maybe I wouldn’t be able to get oen. So I asked Dr. Friedman if that scar would mess up anything and he said absolutely not. he can very easily put an ABI in. So that makes me feel better.
Back in October I sent my MRI to a doctor in Rhode Island. He uses Gamma Knife and is very good. I contacted him because I wasn’t sure I wanted surgery and I was going to try to use radiation to preserve hearing. Dr. Noren finally called me back! lol 6 months later? I guess he saw on the MRI that my optic nerve is messed up so right off he asked me how my vision is. I told him totally blind. Then he said that he has radiated NF2 people before with success, but in my circumstance he would not want to radiate the good ear. Because the chance is small that I would lose hearing, but it’s still a chance and he doesn’t want to take it. He said surgery would garantee hearing loss, so if I was goign to do anything at all with the leftt if it came time to have to do something, then GK would be the way to go. Also the minigiomas in my brain can be radiated if they ever need to be taken care of.
He was very interested about my luck with doctors, or lack there of. I’ve never been properly educated about NF2. He has no idea how I could have went blind from the first brain surgery. He said the second one he can understand because that one damaged the optic nerve.
So he wanted to know where I had this done and goign to get some old records and do some checking. I hope he digs something good up.. lol. I’d love to know!
So that’s all for now and I will be back later. Isaiah is demanding mommy!
