Thursday, October 10, 2013

10/10/2013-Joshua's update

Joshua has been doing very well. About two days before school started, which was August 17th 2013 he was laughing and pushing himself up. I was laughing too. The kids were all there watching him. He was so determined to get up. He pushed himself up so hard that he sat up for a couple of seconds and fell down. Luckily I was right behind him. I couldn't record it though. I was proud of him that I cried almost all day.

His genetics counselor Troy called a couple of weeks ago telling me that the Mitochondria 2nd test came back with something about the aptx gene. So they decided to take a gene testing. It has come back already but have to wait until the genetics counselor to come back from vacation to get called. So we are getting somewhere. I can't wait until next week. So I will be discharging him from the shands genetics Dr. Williams. Since he wasn't really doing anything.

He is doing very well in school. He is in Marion Oaks Elementary School. He has his therapies too. He is doing a whole lot more here then he was at Ppec. They have told me well if it doesn't work out in school make sure you bring him back. Hell no I'm not. They don't do nothing for him. They don't want him to progress. Well he is now.

Sunday, June 2, 2013

Joshua's Genetics and Neurology appt

OK I know I haven't updated Joshua's story lately. There wasn't anything to update yet. But now there is. Ok May 8th Joshua had an appt to see genetics in St Petersburg. Dr Crenshaw decided to take another test which is the second part of the mitochondria testing. I spoke to her about the cdkl5. She said well lets see what happens with the results about this testing and once you see Neurology if she decided to say that it is the cdkl5 she will make an appt to take the test. The person who took the test was great one poke and she was done. Then the good news is that they took two tubes of blood. One for the test and the other to bank it. Which means if they need more blood from him to take that test then they don't have to poke him again. They can use that one.

May 28th 2013. His Neurology Dr. She is his new dr from now on. The one near us in no longer his dr. They discharged him. I gave her all of his paper work. She copied all of them. She looked on one of the genetics paper from st petersburg and she said I see here that you may think it is cdkl5. So tell me about that. So I told her that he has all of the symptoms. Except for two of them. And she said she agrees with me. She wants an updated eeg and mri. and he is getting blood drawn. Then she wants my husband and I to take a genetics testing. Which is the whole exome sequencing test to see which side is it coming from.

I thank the lord that these two doctors are actually doing something to help my son. these dr's that are closer to me isn't doing anything cause he doesn't know what is going on. He doesn't want to test my son for anything. How are you not going to know if you don't take the test? Once it comes out positive for cdkl5 I will go see Dr Williams and tell him that he is positive for it. He is also shock that I know more then he does.

Thursday, February 28, 2013

Marion Oaks Elementary School

Well Joshua is now about to start public school. He has been in Ppec for three years. I wasn't to happy with them for a while. They don't listen to me when I kept on telling them not to put tape on his stomach. They kept on putting the tight gloves on him cause he always put his hands in his mouth. But he only put one finger but like I said they didn't listen. They kept on putting different diapers on him knowing that I had diapers there. They always had him on his chair most of them time. It was like a daycare for him. Yes he did some therapies on him but a lot where he can do things on his own. So thats why he is going to public school. The manager there Linda Lied to me. Last year when he was three years old he could of have started pre-k. But when I filled out the paperwork she told me that they lost it. For a whole years? Come on now. So she told me when he starts school tell them he will be staying here. I wondered why she told me that. Thats a no no in my book. So the process finally went through. It took a while but it is in and finally I went to the meeting that also took for ever. He could of started last month. But they kept on cancelling the meeting. So now the meeting went very well. It took about an hour and half. I met his ese teacher and his next years teacher for kindergarden. and the nurse and two other ladies. They all were great. He should be starting by next week. I have to send some papers to guidance once I am done. I can't wait to see him go. The first day of school I ahve to take him so I can teach them on how to feed him. And stay there for a while to see how they do things and see the special needs children wings. It is further but it will fit his needs. I will be posting pics of him here soon when he starts.

Friday, January 11, 2013


Well on 01/10/2013 my son Joshua had a eye appt. It has been two years that he was seen. The dr he saw wasn't the dr he always sees. I really wasn't happy on what she said. She wanted to know why his other dr gave my son those prescriptions. He was -8.00 and -8.50. Lets say that he wasn't still seeing very well with those. So he is really near sighted. They had to double it to -18.00. That isn't good at all. I won't get his new glasses until next week. I thought he can see me every time I come into the room.