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.

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.

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!

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.

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!

Why us or why not us?

Every now and then, for about five minutes, I think why me, why my baby, why us? I don't think like this very often and when I do I only allow myself a maximum of five minutes to think like this. Why you might ask? Every minute I spend thinking like this takes a minute away from doing something constructive to help my daughter.

I often hear parents of kids with autism speak about their lives "before autism" and "after autism". I feel the same way. I think of my life before I lost my child to autism, and after the diagnosis, and now trying to recover her health, while also keeping my sanity.

Before autism I think it's safe to say I was a pretty selfish, and somewhat arrogant, person. Hey, I was a college athlete and now a police officer. I think it comes pretty natural to me. So here I was this pretty selfish person, blessed with this beautiful child, that needed every ounce of my energy and time. She has taught me so much about love, unconditional love. Imagine never hearing your baby say, I love you mommy. It's the most horrible feeling in the world. For so long, she was so sick that I couldn't even get a smile out of her. So now I think the equivalent of hearing a I love you mommy to a typical parent, is seeing a smile on my little girls face that I made happen. She can have bad days and scream and have meltdowns all day, but if I can get just one giggle out of her...it makes it all worth it.

She has taught me patience. This may just be the biggest lesson, since I had none to begin with. This is something I still struggle with some days, but I have learned so much from her. Some days trying to figure out what she is needing seems to take hours but we make it. And trying to figure out how her body works and what she needs takes all the patience in the world. It seems just when I have her figured out, she proves me wrong.

She has taught me perseverance. I will not give up on this child. I know she is in there. I know the Keely that likes to laugh and giggle. The Keely that is not in so much pain that she just wants to scream. The more we do to clean up her body and get it functioning properly, the more of my baby I get back. I will keep going until I find answers, until my baby is healthy.

I attended an autism meeting once and I heard a lady say her kids were recovered. She went on to tell us that when her kids were diagnosed she made a deal with God. She prayed that if he would show her how to recover her kids, she would pass on the message to as many parents that would listen. I thought, wow, that is awesome. I want to be like that lady. So I came home and I climbed into bed with my sleeping little girl and I prayed and cried and prayed and cried some more.

So here I am, learning all these new things about how our bodies work and how to heal my child's gut and watching her behavior change. I am in total amazement of the things I see her do everyday, small changes. We have learned to celebrate every small success. We have been doing the biomedical stuff for a year now, and I still get excited every time a parent asked me about what we do because I can share what all I have learned with them. I hope to one day figure this all out and be like the lady at the meeting and help out every family I possibly can.

If I could go back and protect my child from autism, I would do anything to make that possible. But I am so blessed and so thankful for everything that she continues to teach me everyday. We have the opportunity to spread awareness and share what we have learned, and maybe, just maybe, in the process change another child's life...so why not me...why not us?

Our Journey

Keely was born on July 5th, 2006 after a pretty rough pregnancy. She was born four weeks early but appeared to be a healthy baby girl. So we brought our beautiful little girl home. We soon realized she had some digestive problems and was unable to keep any formula down. We tried numerous ones and the doctor suggested some others. No matter what we tried she seemed to spit up the entire bottle. She was very cranky and cried alot. Once she started eating cereal and other baby food she seemed to be able to keep the food down better. Once she was able to keep her food down better she was happy, tough, silly little girl.

Developmentally, Keely was doing great. At nine months she started crawling and taking her first steps. By ten months she was walking all over the house. By twelve months she had approximately ten words she was using on a regular basis.

At twelve months old, Keely was not acting like she felt well so I took her to see her pediatrician. He told us she had two really bad ear infections and gave us some antibiotics and to come back in two to three weeks. I remember taking the prescription to the pharmacy to get it filled and they told me it was too high a dose for a baby her size. They told me they would have to call the doctor to verify he did not write it down wrong before they would fill it. They called me later that day and told me that was what he wanted her to have but again said it was a high dose for a baby. Keely is my first child, not knowing any better I gave her the medicine as prescribed by the doctor. When we went back to her next doctor's visit, which was about two and a half weeks later, the doctor said she was better and needed to get her MMR vaccine. Once again, trusting the doctor (who was my doctor growing up) she got her MMR vaccine that day. I carry so much guilt, as I've heard most parents do, for giving her the high dose of antibiotics and for allowing her to get the MMR vaccine that day. People say, well you didn't know any better. I feel like I should have known better. I should have looked into it. I should have known about antibiotic use, vaccines, and Autism, but I didn't. I cannot change what happened, but I can put every last energy, effort, and breath into trying to fix what I let happen.

So, shortly after the MMR vaccine, we lost Keely. She was just gone, in her own little world somewhere. I can't tell you the exact day. I just know all of the sudden she had no words, none, not a mama or a dada, nothing. She began running in constant circles through the house screaming her little head off. She screamed in the morning. She screamed in the afternoon and evening. She screamed all night long. There was nothing I could do to make her happy. It is such a helpless feeling as a mother. All you want is to see your baby happy, and here I was I couldn't even get a smile out of her. The smiles were gone, replaced by crying and tears.

I tried to take Keely back to her pediatrician but now he was MIA. They just kept saying he was away and they didn't know if he would be back or not. I finally got her into to see another doctor in his same office. Oh, and I forgot to mention on top of this, my precious baby boy was born. They are seventeen months apart. So about the time he was born was when I really knew we had problems and was desperately seeking help. So we go see this new doctor. I cannot even explain how bad this visit went. She immediately told me I had another baby too quickly and I was just feeling guilty and there was nothing wrong with my child. And, if this was not bad enough, she sent my husband out of the room with Keely, and continued to tell me how bad of a parent I was. This doctor went on to say I should not have had my son so soon and that I needed to quit my job and stay home with my children because I was the one with the problem. I was crying so hard by the time I walked out of that room, not because I believed her, but because she would not listen to me. I knew there was something wrong with my child and I needed someone, anyone to help us. (Oh, and I wanted, and truthfully still do, to punch her right in the face for the way she treated me.) So we left and I set out to find a new doctor, again.

At about this same time Keely had started going to The Little Gym. This was a horrible experience. I loved The Little Gym and still think it is such a great place, just not for Keely. Keely would go in and run circles around everyone yelling the entire class. They would always laugh and talk about how much energy she had and how fast she could run in a circle. Keely has always been a tough little girl (I like to think she gets that from her mom ;). One day at The Little Gym she figured out how to get the heavy door leading into the lobby open. From that time on all she wanted to do was play in the lobby where there was no other kids. She would go in the lobby and want to spin the lid on the trashcan the entire hour she was there. It got to the point that I was crying all the way home every week when she had class because I knew there was something wrong. She did not act like any of the other kids in there. I eventually stopped taking her.

I heard about another pediatrician from a family member and set up an appointment for Keely to go see him. This doctor just said to give her some time she wasn't two yet and some kids just develop later. I was really feeling pretty hopeless at this point. I haven't talked much about my husband, J.T., at this point, but I think if he were to be honest he thought I was crazy at about this time. He just kept telling me that she would come around. And, at this point I didn't know what was wrong with her. I just knew there was definitely something wrong. Looking back, I think J.T. was just in denial. I don't know if he would admit that or not, but it took him quite a while to realize that there was something wrong.

In my many hours of becoming a Google expert, I read about Soonerstart, which is a program through the state that provides services to children under three. I called and set up a time for Keely to be evaluated. Basically, they come to your house and do an evaluation to see if your child qualifies for services. If they qualify, they send therapists to your home, or daycare, to work with your child. By the time they could get her in for an evaluation it was July of 2008. After they evaluated her they told us she was delayed in nine out of thirteen categories. I remember just being shocked. I knew she had some problems, but I just never thought it would be that bad. She did qualify for their services so she started getting speech therapy through them. They also wanted to get her hearing checked, since she would not respond to anyone. I knew she had no hearing problem since the only thing, at this point, that would calm her down were her two favorite tv shows. She would come running from the other end of the house as soon as she heard them. But they told us they had to do it to rule it out. We went to her first hearing screening and Keely freaked completely out. We had taken the stroller since we had to walk a long way. She loved being in the stroller as long as she was strapped in tight. When we tried to take her out of the stroller into this little room for the screening she just lost it. The lady doing the screening immediately said she has some sensory issues. We did not get a hearing screening that day. Keely made sure of that. We went home and I began looking at sensory processing disorder. It seemed alot of the symptoms Keely had. I remember calling my mom and asking her about it and she said "maybe she has Autism." I remember getting pretty defensive and ending the phone call quickly after that. No one had ever mentioned Autism. I didn't even know what it was, but for some reason I was sure that couldn't happen to us. And though, we have never talked about that phone call, I am thankful that my mom mentioned that. I can imagine how hard it was for her to bring it up. After some more crying, I looked up Autism. I could have diagnosed Keely right there.

So I took Keely back to see the last pediatrician that she had seen. I was armed with the evaluation and was ready for some help. I told him about the evaluation and showed him the results. He immediately told me he thought she fell in the Autism spectrum somewhere, but he wasn't experienced in it enough to diagnose her. This was a Thursday. He told me about the gluten free casein free diet and how many people have such good results. He said we should use the weekend to study up and start the diet on Monday. He also recommended an out of state doctor and said he felt like he was the best in the area. We did start the diet on Monday and I set up an appointment with the DAN! doctor. It took us a couple of months to get into the DAN! doctor so we concentrated on the diet. I remember the first week of the diet I had worked late and slept in. As I was coming out of my room I saw Keely down the hall. I said "Keely", she immediately got up and ran towards me and reached up for me to pick her up. It was working! She hadn't responded to her name since we lost her. That day I decided no matter how hard the diet was we were going to make it work.

We went to see the DAN! doctor towards the end of September. To keep it brief we got several tests to take home to do and a couple of supplements to start. We also started the B12 injections at this time. Keely started saying a couple of words after we started the B12 injections. From the test results we found out that Keely had really high levels of yeast. She also had extremely high levels of mercury, lead, and arsenic. He also did a test that checked her titer levels. Her rubella level came back with the highest result you can get, and her mumps and measles were high too. No wonder why my baby is always crying and cannot sleep!

In January 2009 we finally got into a local doctor that diagnoses children. Keely was diagnosed with mild to moderate pdd-nos, which is in the Autism Spectrum. She was already doing so much better from the diet and biomedical treatments, that I always wonder if the diagnoses would have been worse if we would have done it before the changes.

I am trying to keep this short, believe it or not, but I do have to add in a quick story of what happened during the week of Mother's Day. Keely was sitting on my lap and I was loving on her and tickling her and I started kissing her cheek. She looked up at me and said "I wike getting kisses." And I said Keely did you say you like getting kisses and she just smiled her biggest smile and said "yes." This was very important for two reasons. First, she is always just kind of in her own little world, isn't able to communicate with me, and doesn't show affection. I had really gotten a lesson in unconditional love because it was always so one sided. I could not help but wonder if she could feel love and know that we love her and know that she loves us. It was, by far, the best thing I have ever heard in my whole entire life. Her sweet little voice telling me that she like getting my kisses. Secondly, up to this point I had only really heard her say a word here and there, mostly repeating. I had not heard her say a complete sentence on her own. I just knew at that point she was in there and we had to keep working.

As with any parent on this journey, there is so much more to our story, but I would be typing forever. So, basically, we are now well into the biomedical treatments and the new diet. Actually we just passed our year mark for starting with the DAN! doctor. I have to admit, I thought we would be so much further by now. I guess that's why they say it's a marathon and not a sprint. Some days are very frustrating. It's hard to think that if my daughter had cancer, or some other serious disease, they would know exactly what they would need to do to treat her. But with Autism, it's totally different. Some doctors will tell you nothing can be done to help your child, and others tell you that it is curable but basically you, as the parent, have to find out which treatments work for your child. Oh, and insurance doesn't pay for hardly anything that we do with Keely. So it's like playing the slot machines, you just keep putting all this money into treatments, hoping that one might be the winner for your child.

I know we have a long ways to go, but we have come so far this past year. Keely now has many words that she uses in the right context. We are now working on stringing words together and using them on a more regular basis. More importantly than that, she is not as sick as she once was. We still have a whole lot of work on her body, but when her yeast levels are down she feels so much better. She is now sleeping through the night most every night. Her belly that was so bloated for so long is back to normal most of the time. She's happy now. I think it's now safe to say the good days are once again outnumbering the bad. Her smile is back, her eyes are not dark like they used to be, and she doesn't stim near as much as she used to. We recently started IV chelation in hopes of getting some of the heavy metals out. We also started secretin infusions a couple of months ago. It seems her language is really starting to come along. She goes to a special needs program at the public school Monday thru Friday for half a day and absolutely loves it. She is quite the little student.

Autism has definitely changed our lives. I believe that Keely had a weakened immune system and the antibiotics along with the vaccines were too much for her little body to handle. I do know that the more we clean up her body, the better she gets. So we will continue on our journey, full of hope that one day we can say we fought a good fight and we won!

Happy Dance Day

Today was a really good day for Miss Keely. She did really well and used several different words throughout the day. The best part of the day by far was when she was sitting on my lap wanting me to tickle and love on her. While she was on my lap she looked up at me and pointed to my nose and said "nose." She went on to point out and say my eyes, mouth, and ears too. She had never done this before. I have never heard her say all of those body parts or be able to even point to all of them. It was so awesome! We did a lil happy dance. Well ok, I did the happy dance. She just looked at me like I was crazy, and eventually smiled. I think she smiled when she realized I wasn't going to stop until I made her smile.

I am hoping that by the end of the weekend I have a chance to sit down and write about what led us to where we are today.

Keely's Recovery from Autism

I am starting this blog for a couple of reasons. First I would like to keep better track of Keely's progress, and second, I would like my family and friends to be able to see what Keely is up to and how she really is improving everyday. We don't always get to go to the family and friends events as much as we would like because Keely doesn't care too much for change or a lot of people, so hopefully, this will be a way for everyone to keep up with what we are doing as a family.

I am hoping this blog will be about our journey through Autism, biomedical treatments, and therapies. I would also like to cover the relationship between Keely and her typical little brother, Justice. And I'm sure marriage will come into play here and there.

I am not a writer, by any means, so I apologize in advance for any grammatical errors. And I am no expert in biomedical treatments or Autism. I am just a mom trying to do the best I can for my daughter.

The only thing I am still a little undecided on is where to begin. I have kept somewhat of a journal for awhile now about Keely's progress and challenges. I am thinking about posting this journal on here as a post just so the history is here. It would be really long and I know everyone will not be able to read it, but the ones who do can better understand how we got to where we are today.