Update on the what has been happening with the Keys Family

• Our original Neurosurgen at Children's has left. We didn't know the reason why when we went to see him in April to set the surgery for her spinal cord, he just keep telling us that he wanted to wait 9 months to a year to see if she was going to be able to walk. Well, we don't know if Emory will walk, only God knows if she will walk. We have asked our orthopedic doctor at Children's if he knew if she would walk and he said they could not tell us either way. So waiting another year seemed really odd to me since he had already told us six months previous to this appointment that we would set the surgery date at the appointment in April. Several weeks after that appointment with him, Mom was listening to the radio here and she heard that there was a case that had gone to court that involved Children's hospital and that there was this doctor that was operating on the brain of a boy and he had operated on the wrong side of the brain. So needless to say we were kind of glad that this doctore did not operate on Emory.


• Went to see a spine specialist in April as well to see about Emory's scolisis. Emory's scolisis at the time was at a 75 degree angle. He also noted that Emory's lungs were very small, but that they were clear so that was a good sign; asked us about if Emory every had any trouble with pneuomia, bronchist, upper resporisty problems, which, thankfully she has not. Then he asked us about the tethering of the spinal cord, and told him about the doctor at Children's and he did not agree with what he was saying, and asked us if we wanted a second opinion. He said that the spinal cord surgery should have been done as soon as it was spotted. That it was one of the leading causes for the scolisis. He recommend Dr. Burson at Baptist Health.


• Met with Dr. Burson in May and said that he would do the surgery but told us not to get our hopes up about it helping her legs (Emory doesn't move her legs unless she is having a bowel movement, she will occasionally flex them but that is about it). He wasn't for sure if that was part of the spinal cord being tethered or if it was more a neurological problem. So we will have to wait and see after the surgery. I told him that if it fixed that was great if it didn't we needed to have the surgery anyways for the scolisis. Dr. Burson said though that it had been 14 months since the last MRI and that he wanted a new one done before the surgery. Had the MRI on June 16th.


• June 16th came for the MRI, we also had Emory's eyes and ears checked while she was going to be under anthesia so we killed three birds with one stone. Her ears came back about the same and that they were pleased with the progress that she has made with the BAHA and so are we, it has completely changed her. She interacts with her toys more and with us more. Her eyes came back with good and bad news. The good news was that the eye doctor could still see into the back of the eye, so that meant no clouding of the eye and no scar tissue that has built up. However the pressure in the right eye was slightly elevated and he said that it could be the start of gluacoma but not to panick because there was no nerve damage so that was a good sign. He prescribed a eye drop to help slow down the process and bring down the pressure. So let me tell you how much fun that is, Emory remembers them putting the eye drops in her eyes to dialate them and we had to hold her head and arms down in order to get them in and she squints her little bitty eyes to where it is really hard to open them. So the one thing that I was hoping that wouldn't happen has happened, she remembers stuff that is happening to her. I was hoping that because she has had so much done to her that she would be okay with it but that is not happening.


• We seen our Urologist in May and she had her ultrasound of her kidneys and her bladder. The tech asked me if Emory had an infection, I said no but it was like that the last time we were here to see the doctor. So he said that he could cath her to see if the was any urine in the bladder and run a test to see if there was an infection. Yes there was an infection. That was one of my fears because I knew it would happen sooner or later.


• We seen our dermatologist in May as well. We absolutely love him, he is the most funniest, caring doctors that I have met. He has his residents come in and ask us questions and then go and report to him before coming in the room, they are presenting to him as he is walking in the room and he just cuts them off and just is absolutely excited to "see his favorite patient" He said that Emory's skin was looking great. Of course I had a few questions for him about somethings that I was noticing about her skin. But he said that everything was looking great. It came time for us to discuss coming back and he asked me when I would like to come back and before I could say 6 months he said 6 months and then he said about a year. I was like that would be great. I hate that the one the I absolutely love to see we won't see for a whole year but I just know that it because he has done such a great job with Emory's skin.


• Emory was put on cereal in her bottles because for whatever reason she does not like the spoon. So she was not gaining weight like they were wanting her to so they put her on cereal. Well the doctor that had put her on cereal we went to see in April and he was amazed at how well she was doing with the cereal. In January when we seen him, she weighed 10 pounds and 4 ounces, and in April she weighed 11 pounds and 3 ounces and she had grown an inch. So he was very pleased with what were doing and not to change anything.


• Emory has been saying "dada" and she says it all of the time but she is starting to say "nana" more and she has starting saying "mama" which of course makes me extremely happy. She is starting to say the 'b' sounds and the 'o' sounds.


• She is starting to turn in circles while she is laying down and playing on the floor. We have to keep a watchful eye on her now.


• She is starting to rolling on to her belly from her left side and then just in the last couple of days she is rolling onto her belly and the keep on rolling back on to her back. That is one of the things that therapy was working on her with. Also she is getting up on all fours when she is on her belly and looking around. One night Daniel had already gone to bed (yes Emory stays up late) and she was rolling on to her belly and she got up on all fours and looked around and said "dada" and then smiled really big. I think she was hoping that Daniel was in the room and was going to praise her for such a good job, but he was in the bed.


• She will clap her hands when we ask her to clap them. She is so cute when she does it too. She also will clap her hands when she has done something and she is wanting praise for it. She cracks up when she does that.


• She is getting her top front teeth. That is has not been very much fun.


• So along with the urinary tract infection that Emory had in May, she also had another infection in her thumb. So between all of the infections and then cutting teeth, she has not been a very happy camper.


• Emory stood up at therapy last week!!!!! I couldn't believe it. Her OT therapist put her on a yoga ball with her on her belly and she placed Emory's feet on her legs and then shifted Emory's weight by pushing down on her bottom and Emory just lifted her head up and then the rest of her up and she was standing. Legs flexed and everything. I couldn't believe it and I was watching it with my own two eyes. Her belly was still on the ball but she was standing. It was the most incrediable thing that I have every seen. She did that on Tuesday of last week and then on Thursday stood up for 15 seconds and then of course when I get my camera out to take pictures of her doing it again she only stood up part of the way, kind of like she was riding a horse, doing barrell racing. Here is a picture of her standing up.

• Emory will be having surgery on July 23rd to release her tethered spinal cord. So that will be on a Wednesday and if everthing goes good hopefully she will be released by the weekend. They will go in and make a small incision right at the hip area and just go in and clip the spinal cord at the base. She will have to be off of her back for 48 hours and then once she is up and acting like herself and everything looks normal we will get to go home. So hopefully that will be around the weekend and that we will not have to stay in the hospital any longer than we have too.

I know that this is extremely long but since I have updating in forever just kind of wanted to let you know what was going on. Please keep Emory in your prayers as time rolls around for her surgery. Thanks and we love you guys.