Well things have been crazy busy here. We had a tornado come through and took out many of the homes in our area. We were very fortunate and only had minor damage, but did lose most everything in our yard. We have been working on getting everything back in place so the kids can start enjoying the pool this summer.
We went back to see Keely's doctor in Texas yesterday. He was a little concerned that her low muscle tone is getting worse and believes that the heavy metals levels may be the cause. We did another trial of IV chelation. We have never done chelation on a regular basis because it is pretty much impossible to get a urine sample from her so we don't really know what she's pulling out. This time we collected a stool sample to send in to see what and how much of the heavy metals were pulled out. He was also concerned about her yeast levels so we are suppose to be trying to get a sample to send in to try to determine where that level is at.
I have been looking into homeopathy lately and have been hearing such good things. Most everyone I have talked to talks about how it has helped to heal the gut in their children. We really need this since we still have so many gut issues. I have narrowed it down to two places so hopefully soon we will make the decision on which place we want to go.
Keely's last day of school was today. They had outdoor activities planned for all morning long and invited the parents to come hang out for the day. When we got there she immediately ran to play on the playground equipment. As I was watching her play, they let the pre-K kids out to play on the playground as well. I see this little blond headed boy running over to her. As she grabbed his hand, I stood there in shock. She led him over to the slide and I heard her say "slide". He slid down the slide for her and went back up to where she was. They continued to play together and chase each other around and I caught them holding hands a few more times. I have to admit it brought tears to my eyes. Here's this typical little boy playing with her, and he couldn't really understand what she was wanting him to do and she couldn't really tell him what she wanted, but he was trying so hard to figure it out. He was helping her around and talking to her. I guess because I've always worried whether she will have friends, whether other kids will be nice to her or if they will pick on her because she cannot communicate very well, this was just so sweet and comforting to me. He didn't care that she couldn't carry on a conversation or that she had braces on her legs and was a little clumsy on the playground equipment, he just wanted to play with her. He could have chose to run around with all the boys, but he wanted to stay and play with her. I know not a huge deal to most, but I have never really seen Keely want to play with any other kids or really even want to be around any other kids. So when I saw her teacher I told her what I had saw, she quickly said "oh, you must be talking about Ryan." Apparently they have played together before on the playground and seem to like each other. I just wish I knew this little boys parents so I could tell them what a sweet, caring boy they are raising.
So summer is here! I am hoping to get some sort of homeschool set up going for the summer. Not sure what all that is going to entail, but I am going to give it a shot. She will have ESY starting the second week of June but it will only be for an hour or two three days a week so there will be plenty of time to fit in some homeschooling stuff between that and private therapies. So wish us luck, this is all new territory for this mother warrior!
Wednesday, May 26, 2010
Tuesday, March 9, 2010
The Good Times are Outweighing the Bad
It has been a long time since I have been able to sit down and update Keely's progress. She is keeping us so very busy. The biggest reason she is keeping us so busy is her constant progress. It might be slow, but as long as we keep moving forward it makes all the hard work worth it. Keely's speech continues to improve. She is now labeling many, many things. She is also starting to use many more words in an appropriate manner. She can request several things that she is wanting with one word requests. This is making life for all of us at home so much easier.
Keely is having some issues at school. She just seems bored and gets very irritable while there. A lot of days the teachers will say she had a good day, but I have seen the way she acts there and at private therapy and at home and there is a big difference. The school is really the only place she seems to have problems. I think one of the biggest issues I see there is that the things they have her doing are not challenging to her. She can master something in five minutes and then is ready to move onto something harder. I also think the school does not know what Keely is capable of because she has never really been challenged hard enough there. We are working with teachers and the doctor who diagnosed her and will hopefully come up with a plan where she can get more out of her time at school. She is also hyperlexic so I think that plays a big role in all of this. She loves words and loves to read, spell out words with letters, and just look at different words. She can already recognize so many words, and I'm sure this is not something that is typical with a three year old. So while at school she is suppose to be interested in things that would typically be in a three year old classroom, she is more interested in what you would find in a five or six year old classroom. But at the same time her speech is so delayed it is hard to fiqure all this out. And Keely is very good about only wanting to do what Keely wants to do. So it is kind of hard to fiqure what she really does know because when asked she usually will not answer, but later on you will see her do or say whatever you where trying to get her to do. Such a smart, complex little girl.
Keely has also had to get leg braces (AFO's). She has actually done really well with them considering how hard headed she is about most things (she gets it from her dad, I am sure). She had to get them to try to correct her hyperextending her knee back while standing. So......being the smart girl that she is, we were home for all of about five minutes when she fiqured out she could rock back and stand on her heels and still lock her knees back. She is also sometimes walking on her heels with her knees locked back too. To try to correct this they have added a small heel wedge to attempt to get her more forward off of her heels and also hoping that with time she will just get used to them and it be corrected on its own. Just another example of her not taking it easy on her momma!
As far as the biomedial route, we are still getting secretin infusions which seem to really boost her language. The first week or two after her infusion we really see her using more words and they are very clear. We have also recently started Enhansa. The Enhansa has really helped with her interactions with other people and she is much more affectionate with us. So many nights now she wants to just lay around on us and let us rub on her arms and legs and love on her. I just love every second of it. For so long she was not affection and it was almost like she did not even know we were in the room with her and now she is seeking us out for attention. I love it! We are still trying to work on some constipation issues with the Enhansa, and I am hoping we can work it all out because she seems to do so well on it except for that issue.
I am just so happy that she is getting better. Of course I wish the progress was faster (and easier of course) but it is not. It takes a lot of hard work, tons of money, and sacrifices that I never imagined I would have to make, but I have a daughter who is healthier than she has ever been. She smiles more than she has ever smiled, loves music, books, and learning. I have a son who loves to take care of sister and wants so bad for her to play with him, and while she is not quite there yet I believe that day is coming. I know he will be just as excited as us.
Keely is having some issues at school. She just seems bored and gets very irritable while there. A lot of days the teachers will say she had a good day, but I have seen the way she acts there and at private therapy and at home and there is a big difference. The school is really the only place she seems to have problems. I think one of the biggest issues I see there is that the things they have her doing are not challenging to her. She can master something in five minutes and then is ready to move onto something harder. I also think the school does not know what Keely is capable of because she has never really been challenged hard enough there. We are working with teachers and the doctor who diagnosed her and will hopefully come up with a plan where she can get more out of her time at school. She is also hyperlexic so I think that plays a big role in all of this. She loves words and loves to read, spell out words with letters, and just look at different words. She can already recognize so many words, and I'm sure this is not something that is typical with a three year old. So while at school she is suppose to be interested in things that would typically be in a three year old classroom, she is more interested in what you would find in a five or six year old classroom. But at the same time her speech is so delayed it is hard to fiqure all this out. And Keely is very good about only wanting to do what Keely wants to do. So it is kind of hard to fiqure what she really does know because when asked she usually will not answer, but later on you will see her do or say whatever you where trying to get her to do. Such a smart, complex little girl.
Keely has also had to get leg braces (AFO's). She has actually done really well with them considering how hard headed she is about most things (she gets it from her dad, I am sure). She had to get them to try to correct her hyperextending her knee back while standing. So......being the smart girl that she is, we were home for all of about five minutes when she fiqured out she could rock back and stand on her heels and still lock her knees back. She is also sometimes walking on her heels with her knees locked back too. To try to correct this they have added a small heel wedge to attempt to get her more forward off of her heels and also hoping that with time she will just get used to them and it be corrected on its own. Just another example of her not taking it easy on her momma!
As far as the biomedial route, we are still getting secretin infusions which seem to really boost her language. The first week or two after her infusion we really see her using more words and they are very clear. We have also recently started Enhansa. The Enhansa has really helped with her interactions with other people and she is much more affectionate with us. So many nights now she wants to just lay around on us and let us rub on her arms and legs and love on her. I just love every second of it. For so long she was not affection and it was almost like she did not even know we were in the room with her and now she is seeking us out for attention. I love it! We are still trying to work on some constipation issues with the Enhansa, and I am hoping we can work it all out because she seems to do so well on it except for that issue.
I am just so happy that she is getting better. Of course I wish the progress was faster (and easier of course) but it is not. It takes a lot of hard work, tons of money, and sacrifices that I never imagined I would have to make, but I have a daughter who is healthier than she has ever been. She smiles more than she has ever smiled, loves music, books, and learning. I have a son who loves to take care of sister and wants so bad for her to play with him, and while she is not quite there yet I believe that day is coming. I know he will be just as excited as us.
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