It has been a rough week here. The kids have been sick and it totally wiped them out. They both slept more than I have ever seen them sleep. Now we are snowed in. Keely has wanted to go out in the snow all day today. Since both are still sick, no one is going out to play and neither of them are very happy about it.
Today, as we were lounging around the house being snowed in, the kids and I were laying on the couch. Keely will very rarely be anywhere near Justice, especially on the same couch. Today though was different, they both laid there for a while then they started playing around. Justice gave Keely kisses, hugs, and tickled her. She was loving every second of it and laughing the whole time. This was great, especially considering most days she tries to act like he doesn't even exist. As for Justice, he loved it! He wants her to play with him so bad and this was one of those times when it was like they were a typical brother and sister just playing together.
Tuesday, February 1, 2011
Sunday, January 16, 2011
Keely's Jokes
Keely's play skills are coming along well. This week she was playing with her safari animals and as I was watching her play, she looked up at me and had some of the smaller ones and said "babies". A little bit later she had some animal and was making Pablo (little Backyardigans figurine) kiss the animal.
Tonight she was ornery as can be. She was trying to do things she knew she wasn't suppose to do, and she would wait until I turned my back and then try to get away with doing it. When I would catch her she would start giggling and take off running from me. One thing was moving the rug from the back door onto the coffee table and another was turning over a chair in the dining room. Both she knows she is not suppose to do and every time I turned around she would go for it and just giggle like crazy. It is awesome to see her little personality come through and try her little jokes with me.
Tonight she was ornery as can be. She was trying to do things she knew she wasn't suppose to do, and she would wait until I turned my back and then try to get away with doing it. When I would catch her she would start giggling and take off running from me. One thing was moving the rug from the back door onto the coffee table and another was turning over a chair in the dining room. Both she knows she is not suppose to do and every time I turned around she would go for it and just giggle like crazy. It is awesome to see her little personality come through and try her little jokes with me.
Friday, January 7, 2011
It's a New Year!
It has been a week full of ups and downs to begin 2011. We started the week good. I was getting Keely dressed and she was eating a snack while I was putting her braces and shoes on. I left her shirt off since she was still eating. When she was done she put her snack bowl down and got her shirt and brought it to me in the other room and wanted me to help her put it on. Normally, she would have no interest in putting the shirt on, she would have just ran around without a shirt until I went and got it and chased her down to put it on.
Then the old yeast problem came back. I had taken her off the prescription yeast medicine a couple of months ago and thought we were doing pretty well considering we were trying to get off the prescription. But this week it got out of hand. I could tell she was in pain and her behavior was horrible. She was not sleeping well either. So I added back the diflucan for now, but am still hoping to get her completely off of it soon.
Even through all that she has made progress and done a few new things this week. This morning she was wanting to leave for school and had gone and got her coat to put on. I was still trying to get her to eat her breakfast so I held up her bowl of food up to her and said bacon. She held up her coat to me and gave me 'the look' and said coat in a little demanding voice. It was pretty dang cute. I love how she can amaze me everyday.
You and Me Against the World
Then the old yeast problem came back. I had taken her off the prescription yeast medicine a couple of months ago and thought we were doing pretty well considering we were trying to get off the prescription. But this week it got out of hand. I could tell she was in pain and her behavior was horrible. She was not sleeping well either. So I added back the diflucan for now, but am still hoping to get her completely off of it soon.
Even through all that she has made progress and done a few new things this week. This morning she was wanting to leave for school and had gone and got her coat to put on. I was still trying to get her to eat her breakfast so I held up her bowl of food up to her and said bacon. She held up her coat to me and gave me 'the look' and said coat in a little demanding voice. It was pretty dang cute. I love how she can amaze me everyday.
You and Me Against the World
Wednesday, May 26, 2010
Summer Time!
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!
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!
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.
Tuesday, December 15, 2009
Progress is Sweet!
It was a long week last week. Keely has been sick off and on (mostly on) for about a month now. One day last week she woke up crying in the middle of the night. After much screaming I finally laid down in the floor beside her and begged her to show me what was wrong. She has never told us what was hurting her before, so I was completely shocked when she immediately started tapping on her right ear. She then put my hand on her right ear. The next day we took her to the doctor and she had an ear infection. This was such progress for us. I really didn't want to put her on antibiotics. I was afraid it would kick up the yeast. She has not taken any antibiotics since we started biomedical treatments, but they said it was bad enough that she needed them. I have upped her probiotics in hopes of keeping the yeast problem tamed.
Keely has been gluten free and casein free for over a year. She has never had any infraction since we started. I was very proud of this and we worked really hard to make sure we were very strict. Well the streak ended. I went to get her from school the other day and her teacher told me the speech therapist had given her vanilla wafers. So by that afternoon the diarrhea had started and by that night her stimming was getting bad. The stimming continued through the next day. I guess this just confirms why we need to be so strict with the diet. She has just been feeling so much better so it was sad to see her not feeling well. It reminded me of some time back just not as bad, thankfully.
And for the really good news....Today Keely and I went shopping for a few things. We went to Target and had been in there for a little bit when we needed to take a bathroom break. I lifted her out of the basket and let her walk. As we were walking, I ran into a lady that I used to work with. We started talking and I picked Keely up and we talked for several minutes and Keely was as good as can be. We went on to the bathroom and then she got back into the basket and we went to shop some more. We then ran into my friend again and Keely let us talk for about 30 minutes. She sat so patiently and at one point we were by a shelf that had several men's hats on it. She started trying on hats. It was so stinkin cute. And this is a REALLY big deal because.....it has been so long since I even attempted to carry on a lengthy conversation while she was with me. I gave that up a long time ago. She would get impatient, start yelling and then it would all be over...within a matter of seconds. But not now! My friend had not seen her since she was a baby but had heard that she had been having problems. And she commented several times about how she couldn't even tell by watching her that anything was wrong. And yes...I cried all the way home. We are on our way! Yes we have a long way to go and she isn't talking like she should be....but she can say words and she is using some words everyday. And we still have problems with transitions but these are all things that have gotten so much better so I know she will just keep improving.
Keely has been gluten free and casein free for over a year. She has never had any infraction since we started. I was very proud of this and we worked really hard to make sure we were very strict. Well the streak ended. I went to get her from school the other day and her teacher told me the speech therapist had given her vanilla wafers. So by that afternoon the diarrhea had started and by that night her stimming was getting bad. The stimming continued through the next day. I guess this just confirms why we need to be so strict with the diet. She has just been feeling so much better so it was sad to see her not feeling well. It reminded me of some time back just not as bad, thankfully.
And for the really good news....Today Keely and I went shopping for a few things. We went to Target and had been in there for a little bit when we needed to take a bathroom break. I lifted her out of the basket and let her walk. As we were walking, I ran into a lady that I used to work with. We started talking and I picked Keely up and we talked for several minutes and Keely was as good as can be. We went on to the bathroom and then she got back into the basket and we went to shop some more. We then ran into my friend again and Keely let us talk for about 30 minutes. She sat so patiently and at one point we were by a shelf that had several men's hats on it. She started trying on hats. It was so stinkin cute. And this is a REALLY big deal because.....it has been so long since I even attempted to carry on a lengthy conversation while she was with me. I gave that up a long time ago. She would get impatient, start yelling and then it would all be over...within a matter of seconds. But not now! My friend had not seen her since she was a baby but had heard that she had been having problems. And she commented several times about how she couldn't even tell by watching her that anything was wrong. And yes...I cried all the way home. We are on our way! Yes we have a long way to go and she isn't talking like she should be....but she can say words and she is using some words everyday. And we still have problems with transitions but these are all things that have gotten so much better so I know she will just keep improving.
Friday, December 4, 2009
Autism B4 N After Project
A facebook friend of mine, and fellow warrior mom, started a project to document children with Autism who are recovering or are recovered. I sent Keely's pictures in so she could be part of the project. Please take the time to click on the link to the left for the Autism B4 N After Project blog and see the faces of Autism. Many of the kids pictures show the amazing progress you can make through biomedical treatments. Many of the kids have a before Autism (before they regressed), after the diagnosis, and then after doing biomedical treatments. And if you are a parent with a child recovering or recovered go to the blog for information about adding your child to the project.
Saturday, November 28, 2009
Thanksgiving!
Thursday was Thanksgiving and we had several family members that came to our house for the day. Keely did so well all day long. My cousins daughter brought her new puppy, which is about the size of a beanie baby. I think when Keely first saw it she thought it was a stuffed animal. She did really well with it for the most part. She pet it and even shared one of her toys with it. She would get upset and say "dog" every time anyone tried to move the puppy away from her.
Some of the family that was there had not seen her since last year. Everyone thought she looked and acted so much better than last year. She is so much more calm now and last year the noise upset her and she spent most of the day hiding in her room. Not this year though, she took one short break in her room to do her listening therapy and the rest of the time she was out with everyone else. It was so nice to see her handle everything so well.
We have recently started Keely on NourishLife Speak. "NourishLife speak™ contains a patented blend of concentrated and purified omega-3s from fish oil (EPA and DHA), natural vitamin E (d-alpha and d-gamma tocopherols), Vitamin K (K1 and K2), borage oil (GLA) and natural orange flavor in 1200 mg soft gelatin capsules." (That was from the company website.) We have noticed Keely is responding and comprehending much better. One day her dad was trying to feed her a sandwich and I was in the other room and I heard her say "orange please". It was funny because it took my husband a little bit to process that she just requested what she would rather have and said please after it. And yes, of course she got an orange. She also has said "thanks" several times lately for helping her or giving her something....oh how I love that polite little girl!
She got pretty sick with a sore throat and coughing last night while we were at work. My mom called worried about her so I ended up going home. JT ended up coming home as well since we thought there for a little bit she might need to go to the emergency room. JT asked her if she had another dirty diaper and she looked up at him and smiled and said "no". She has never answered questions like this before. It was pretty late and she was still up since every time she laid down she started coughing really bad. She was sitting in the recliner playing a game on the iTouch when we told her it was time for her to go to bed. She got up and walked to her room and climbed up in bed, all by herself! It is always so hard for me to believe a supplement or new treatment can cause such big results, but it seems this one is working very well for her. There have only been a few things we've done where we have seen dramatic results. Most everything we do seems to help a little and it just seems like such a slow process so it's always good to get something where you can see some big changes...it helps you keep that hopeism. So...the things that have shown the biggest results for Keely have the GFCF diet, B12 injections, LDN cream, secretin infusions, and now, hopefully, the Speak supplement.
This Thanksgiving I am thankful to all the mommy warriors (and daddy warriors and doctors who have the courage to practice outside of the "norm") that came before me and led the way in biomedical treatments that I am using to heal my daughter. She is improving daily and for that I am thankful!
Saturday, November 21, 2009
The ABC's....never sounded so sweet!
What a great week we have had. Keely is making progress everyday. It's slow progress, but it's progress and we couldn't ask for more. First of all, she went to see her occupational therapist on Tuesday. We had been sick and had some other issues come up that she had not seen her in three weeks. She was suprised by how well Keely was doing. She said her language was really coming all and she was saying so many new words and that her play and imitation was so much better.
Keely has been getting speech therapy through the public schools. I had asked her OT a couple of times about whether she needed to be getting speech therapy privately as well. We had always decided to wait since she really didn't have enough words to really work with. Well this week, Keely was doing so well with her speech, that she told us it was time to start private speech therapy along with what she was getting as school. We are so excited and looking forward to get it all set up.
We also went back to Texas to see her doctor this week. In the waititng room they have a rug with the alphabet on it. Keely started saying her abc's and then at the end she went on to sing the part about next time won't you sing with me. She said it a few times while we were there and a couple of more times on the way home. I am pretty sure it was the sweetest abc's I have ever heard!
The visit went well. She got another secretin infusion and some new supplements. This is her third secretin infusion. They seem to really help her. She seems to use more words after getting them.
Keely has been getting speech therapy through the public schools. I had asked her OT a couple of times about whether she needed to be getting speech therapy privately as well. We had always decided to wait since she really didn't have enough words to really work with. Well this week, Keely was doing so well with her speech, that she told us it was time to start private speech therapy along with what she was getting as school. We are so excited and looking forward to get it all set up.
We also went back to Texas to see her doctor this week. In the waititng room they have a rug with the alphabet on it. Keely started saying her abc's and then at the end she went on to sing the part about next time won't you sing with me. She said it a few times while we were there and a couple of more times on the way home. I am pretty sure it was the sweetest abc's I have ever heard!
The visit went well. She got another secretin infusion and some new supplements. This is her third secretin infusion. They seem to really help her. She seems to use more words after getting them.
Friday, November 13, 2009
A New Haircut
Well we have all been sick for about a week now so I haven't gotten a chance to update the new blog. Keely got a new haircut last week and it went so well I just have to share with everyone. When I called to schedule her appointment our hair stylist, who is a friend of mine from high school, said something like oh no that's going to be hard. I reminded her that the last couple of times it had gone pretty well so I wanted to try it.
I took her right after she got out of school. She climbed up in the chair and sat down just like a champ. She pretty much sit still the entire time and actually got a haircut, not just a trim, but an actual hair cut. It looks so cute! And as we were leaving the girl who cuts her hair made a comment that she did better than most five year old kids that she does. YAY! Good job Keely. I think she was a little proud of herself too because the rest of the day she walked around smiling like she was justing looking too cute.
Keely also has a new favorite word, away. It actually is really funny because it's like a two year old telling you no for everything except she tells you away. If she doesn't want to do what you want her to, its away, like move away from me. If she doesn't want her dinner, its away, as in move that food away. If she wants to leave, its also away. I love to hear her talk though, so any word, no matter how often, is wonderful!
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