Floating Along

There has not been too much action on Baylor’s journey right now, which is a nice little break from the constant go we are on. She is still going to speech and occupational therapy twice a week and school two other days each week. Her schedule will shift in July to three days of school and two of therapy. She is a busy little girl! So is her chauffer.  Do not think that just because she has all this going on that she has not gotten to enjoy her summer.

You should see her little stuff in the pool! She has this floatie/life vest type thing that snaps on the backside and she has crazy freedom with it. She jumps off the side of the pool after saying a prompting of sorts (something along the lines of “ready, set, go”) and goes completely under water without the need to be caught. She then dog paddles to the side and sticks her head under water, pulls it up to breathe, back under again all while dog paddling. She will go up the climbing tunnel and down the slides all by herself at the pool and then swim out to the deep end. Two and a half hours later, she still wants to keep going. So does Ainsley, but I have to stop them at some point or they would turn into raisins. We have been enjoying watching them love life.

Bay is taking a break from chelating due to some unwanted side effects. Apparently what we were using and the method was causing Baylor to have yeast outbreaks. Basically yeast can overgrow in the intestines, or the gut, and directly affect mood, behavior and eating habits. Bay would act really silly, almost like she did when she was eating gluten and dairy. She would laugh all the time, wake up and laugh for hours at night and then all she would eat was carbs or sugar. This was not helping her in therapy at all. She could not concentrate and we felt it may be the wrong way to chelate. Graciously, God led a sweet woman to reach out to me to talk to me about the method we were using and another method she uses and the pros to what she is doing for her boys. There is a brilliant man named Dr. Andrew Cutler, who is a biochemist that had mercury poisoning from dental fillings and went into a lab knowing how the body works and came up with a way to get rid of the heavy metals in his body. His method calls for a more frequent dosing of a chelator that is done every three hours (including overnight) over every weekend for at least a couple of years. Apparently his way is more effective and safer, and children who have “recovered” did it with his protocol. I talked to our doctor and he is on board. Yay! We have not started yet, as we need quite a few more supplements in her system before we can start. Hopefully we will be able to soon as we are ready to get the metals out of her system.

Therapy is going well, and Baylor is repeating a lot of what her therapist is trying to get her to say. Bay is still slow moving in the spontaneous language but she is going at her own pace. We are happy to see ANY spontaneous language. She is using some short phrases which is really great. Today after therapy she went behind a bookshelf as I spoke with her therapist and we walked over to her and she said, “I poo-poo. I poo-poo.”  That’s awesome! Not that I got to change a stinky booty, but that she told me she went #2 and she used first person. She also says, “I don’t want to” and “I do it”. A lot of children on the spectrum can’t use first person correctly. This is not something we have had to teach her. Ooooh, something else new....

Baylor is loving on her therapist and going up and touching people she does not know. She has been going to my friends and people sitting down around her (I suppose she thinks they are there for her) for interaction. Again, social situations are usually another hard area for ASD kids. She is coming out of her shell and trusting others a little. She played with a good friend of mine in the pool today. I came over to her and she wanted nothing to do with me because my friend was playing with her and she wanted to continue with her. Honestly, I am not sure my writing can convey how big this is for her. She used to only let ME hold her, love her, play with and touch her. She did oxygen therapy and she began to interact and let others touch her. She continues to let that interaction grow each month. Now, she does not care that much when I leave her and when I come back she does not act like she is surprised I am there. Seriously, her understanding is growing and with it comes more typical behavior. She is being blessed by her Creator. We are in awe and give thanks daily for our blessings.

Please continue to pray for our sweet Bay. She is doing very well but we have a lot that we still need to have in place to have her heal. Currently we are waiting on our coordinator to arrange how many hours of ABA therapy we can get. We had our evaluation a few weeks ago but we need approval before we can find some time to schedule this therapy. This is in-home therapy that is not covered by insurance in the state of Tennessee. Right now we will be covered (whenever they get around to it) under the state until she is 3, and then 4 hours a week will cost around $1,600.00. We are working on getting her some grants because, seriously, who can afford that? If any of you know of anything that could help with this, please let us know!

Music therapy is on hold because Baylor will not tolerate the headset any more. Awesome. I may try again in a month or so. Sigh. I am not sure what happened there. We are waiting on an appointment with Vanderbilt to help get us in with neurology and possibly genetics. That appointment is in July.

So I thought this would be a short post but apparently not! Well, at least you are up to speed J We are still looking forward to the WALK NOW FOR AUTISM SPEAKS in September. Feel free to visit our site and we will update soon! www.walknowforautismspeaks.org/tennessee/baylorsfamily.

Thank you for your love, support and prayers. It means the world to us.

Love always ~ Team Bay

Speech Progress

It has been a while since I updated last and I am really sorry! A lot has happened since then, but we have been really busy this month.

Baylor had a quick outpatient surgery at the beginning of May to get tubes in her ears because she had been having so many ear infections. I sometimes wonder if some of her speech delay has been because could not hear because of fluid on her ears. She probably had around 6 ear infections from November to March. She had no complications from the surgery and her language is improving a lot! On a side note, Baylor was a major fighter when she came out of surgery. Apparently anesthesia and Bay do not agree.  Thank goodness it was not much anesthesia or that could have been a lot worse (you can tell this traumatized me)!

Back to her language, we cannot really figure out what has caused her huge jump in speech but we are so happy to sit back and listen. She repeats so much now, whereas before she was not repeating but maybe a few words. Now, it is amazing. She is working hard to say what she hears and she is using her words in the appropriate places. For example, when she was at school last week and was being put in her place to sleep, she said, “Sleeping, oh no!” That’s a whole phrase! We do not always get phrases, but we get told occasionally “eat” when she typically would never say anything about wanting food, or tell us or others “bye” before anyone else is saying it. Baylor labels things more. She spontaneously told her therapist, “choo-choo” and went to play with the toy train. She told me “leg” when I was putting her leg in her pjs even though I did not say leg. What is really cute is she will sing a song that is in her head but we don’t always know which one.  Her best repeating comes from a movie we watch by the Zinghoppers. They do music and have dressed up characters and Baylor sings and mimics what they do to all the little details. Almost each time we watch it she shows me something new she can do or a word in a song they sing. God is blessing her and us tremendously!

Another thing we have been doing that may be responsible for her leap in progress is chelating. I may have gone over this already but just in case I have not, here is the skinny. Baylor takes a chelating agent called DMSA by pill twice a day that smells terrible that she totally loves to take. It attaches itself to her heavy metals by pulling them out of her organs and out of her body via urine. It takes some good minerals, too, so we give her extra supplements after the chelating days. We go three days on eleven days off of this process. We test her next month to see if her metals are less present than they were before. Please pray specifically for her on this treatment.

Baylor has progressed in so many ways lately! She is comprehending  so much more and interacting with our world in ways we have not seen. She ran up to an office assistant when they opened the door to take us back and put her arms up for this complete stranger to hold her.  She picked her up and Baylor was just fine with it. She recognized it was time for her to go back and went for it before I could even get there. We are just thrilled with what God is doing in her life and we are looking forward to each day.

The other idea we have that could be what is improving Bay alone is Our Healer. I would not rule out Him healing her all by Himself. My God preforms miracles and is alive and working in our lives. Regardless if He was going to do it with no help from doctors or through the use of doctors, we have no doubt He's responsible for her healing.

We have our regular doctor appointment in a few weeks and we need a referral to a neurologist to rule out seizures. Once we do that, I think we may be done for a little while on specialists. We may do genetics testing. That could be fun. Her teachers think she may be having little seizures throughout the day that are not the major seizures you think of and they think we should rule out any genetics issue as opposed to a pure autistic issue. Either way, it is all neurological and we have a few more doors to walk through to rule everything out.

Speaking of fun, we are looking ahead to a walk in September. Saturday, September 8, 2012, we will be participating in WALK NOW FOR AUTISM SPEAKS, for Team Baylor. Please consider donating to this organization. They are funding research to help families and children with autism have better services, a better life, and looking for a cause. Please donate if you can, any amount would be wonderful. Also, if you would like to come walk with us for Team Baylor, we would LOVE to have you join us in Nashville! www.walknowforautismspeaks.org/tennessee/baylorsfamily.

So much love and blessings!

Team Baylor

Diagnosis

Today Baylor, Stephen and I went to Vanderbilt’s Kennedy Center in Nashville to meet with the Director of the TRIAD division for a diagnosis. I will give you a quick run-down on the diagnosis game. The medical book that is used is called the Diagnostic and Statistical Manual for mental disorders, or the “Bible” (for lack of better terms) for mental diagnosis. These are updated and changed fairly regularly. Right now autism carries a few different titles, but all fall under the autism spectrum.  There is Autism with different levels of severity, Asperger’s, Sensory Processing Disorder and PDD-NOS. Some psychologists still use these labels, but the DSM is about to change and scoop all these forms of autism under one condition called Autism Spectrum Disorder (or ASD). Baylor was diagnosed with autism as that is the only diagnosis the doctor gives and provides the best means for services. It also makes her not need to be re-diagnosed when the change takes place. Basically she fell on the spectrum so he calls it autism.   I am pretty confident that the word autism will morph slowly into ASD when they change over the books. So, if you hear us use it, that’s why.

Basically, we knew going in that Baylor fell on the spectrum, so a diagnosis is really a formality and helps with getting her qualified for therapy and helps insurance pay for her services. Also, with a diagnosis, she is entitled to a lot from her school district well before and during elementary school.  We are blessed to be in Williamson County, as they provide top notch amenities for kids with disabilities.  The school provides Occupational and Speech therapy as well as an Applied Behavioral Therapist (ABA) in her inclusive classroom setting (kids of all abilities). Right now Baylor is in a program that provides her with school, and her therapies. The doctor did say that with her diagnosis, she should be able to qualify for an ABA therapist and that’s about all we need to do other than what we have been doing. I would like to note some of the great things he said to us about Baylor and her future.

One of the greatest things we were told is that she only shows half of what autistic kids typically present. They were so impressed with her motor skills and they believe she did not really need the Occupational therapy, except that like I had figured, she gets extra time to work on verbal skills and social interaction. Those are the two of her areas that present on the spectrum. Since she is trying to use words and gestures to get us to do what she wants, they believe the ABA therapist will really help pull her into much better communication. Her age was another big deal. The doctor was really happy that for her age we have been doing so much for her already. He told us that the children with the best trajectory for success looked like Baylor. Sadly, he mentioned that she was more the minority of where kids are when they step through their doors. We just have to make sure we give her good intense therapy to give her the best chance of success. He mentioned that kids presenting like her were the ones who (not a guarantee but very likely) could get to kindergarten/first grade needing little to no help. That’s the hope that we have focused on and the peace that we have been given. It’s really nice to hear this from a head psychologist and our MD that have over 3 decades of practice in them that Baylor’s future looks really good.We are so incredibly blessed!

Where do we go from here? He’d love intense, in-home ABA and if possible more school. Alright! We are also looking for some headphones for Baylor’s music therapy we are wanting her to start. It’s almost impossible to find the headphones used online. If you all know of anyone that’s in music therapy or has gone through it and they have some we could buy, please let us know! They are called Sennheiser HD500 A. These headphones distort CD’s that make pathways from one side of the brain to the other and it has shown to help in all aspects of autism. We hope to start this soon!

Back to the ears, we are scheduled for tubes in early May. When we know the exact date, we will let you know (probably through Facebook) and ask for your prayers!

We hope you can see God’s hand in all of this, because not only can we see it, but we feel it. Life is so much better lived in dependence on Him.  Please keep praying!! Much love from the Kings J

Heavy Metals

Last week we had 3 doctor appointments, 4 therapy sessions, 2 days of school and 4 playdates. We have been busy! Our first appointment with our amazing doctor revealed that our sweet little girl has really high levels of certain toxins in her body. She is high in Barium, Cesium, Aluminum, Nickel, Lead, Thallium, and Tin. She is slightly high in Mercury. Ok, so have we been bathing her in toxic baths every night or what? Basically the doctor thinks that the environment (water, food, shots, etc.) is too much on some children’s systems and they can’t properly detox. So it is time for Baylor to detox some more. The HBOT was a detox and has helped a ton, but now we are moving on to chelation therapy. We will be giving her 3 days of a chelator called DSMA and the following 11 days with her supplements.

DSMA will bind the toxic metals that are in her cells and pull them out through her urine. They also take a few good things but that’s what the partner minerals will replenish. We will start this tomorrow and have her retested in about 2 months. This chelator cannot cross the blood/brain barrier so it is considered very safe. This therapy has helped a lot of children, but for some it doesn’t make any difference. Our doctor has used this therapy a lot and we are really trusting in his experience and advice. Not to mention God really brought this doctor to us before we ever knew we needed him. So we are very much trusting in this path God brought before our family. We will commit this therapy to Him and we will see if it works for Baylor! Please be praying that it does!

I have to document Baylor’s improvements for a minute. Just today she got upset with me for not giving her Easter candy to her for lunch and threw a mighty big fit in the kitchen. I picked her up and sat her on my lap and she yelled then pointed at the Easter baskets, patted her chest a few times and said “need, need,need!!!” I know that may not sound like much, but she was communicating with more than one gesture and words!!!One of our biggest struggles is communication and she really tried hard to tell me she wanted her candy! I was so excited! Also, she is trying to play around Ainsley (which ticks Ainsley off when she’s trying to do art) and do what she is doing….normal stuff! Oh, and did I mention she pee-peed on her little potty? I’m so not going to push that right now, but I told her that’s what you do on it an she did it! I can ask her for a kiss and she’ll come up and kiss me. She is really understanding what is going on (and throwing some serious fits if we try to thwart her plans). Girlfriend is a walking disaster. If it can be spilled, thrown, squirted (think liquid bathroom soap as she opens drawers and climbs on the counters), drawn on (walls and floors), or dump out the water from the bathtub, she is going to do it. Non-stop. All day every day. Don’t come over and wonder why my house isn’t clean. Now you know. We are over-joyed at her progress.  These shots are well worth it!

Her ENT appointment went well, and we haven’t gotten total confirmation yet but we are pretty sure tubes are in her near future. We had her hearing tested and she is within normal range, yay! We figured this as she will respond to Veggie Tales music from the other side of the house but ignore you when you try to re-direct her. Feisty little thing. Our next appointment is a week from Tuesday at Vanderbilt for a diagnosis. We will let you know what that diagnosis not long after we receive it.  Please pray for that appointment, as well.

I believe I will end there for now.  This month is Autism Awareness month and I encourage you to just do a few minutes of research and educate yourself a little. I didn’t know a fraction of what I know now before Baylor’s onset. Just Google "autism", or go to www.tacanow.org.

God is faithful and we are joyful in the wait and grateful in the blessings He's been giving our family! Happy Easter! He's risen and alive and He still moves stones! 

In the Land of Referrals

So basically, the title says it all. We are currently waiting on 3 referrals: an ENT, an orthopedic specialist, and a psychiatrist. The first that we will get is the one for a clinical evaluation by Vanderbilt Children’s Hospital. We are scheduled for this one next Thursday, March 29^th at 1:00 p.m. This evaluation will last approximately 4 hours. Yeah, that should be a blast, and at the end of it we get an official diagnosis. The thing that stinks about this kind of diagnosis is that it’s really based on our interview and her behavior in the eye of the beholder during a one slot observation day. You know after writing this, I’m going to email and ask for another time slot, possibly the morning.  Maybe we will even get a doctor that looks older than me! We would love your prayers as next Thursday approaches and if the date changes I will let you know that, too. I do want to say this. Whatever her diagnosis is now does not have to be permanent. We don’t believe it will be. Our God is bigger than any opinion by doctors, bigger than x-rays and lab results and He lives to work in us and through us and our circumstances.

It is a toss-up on which doctor comes next, the ENT or the orthopedic specialist. Poor Bay has ear infections if she gets any cold or virus. Her speech therapist wants her hearing checked, too. The ENT will be able to check all of that for us. The orthopedic specialist is on the list because when we had her foot checked, the podiatrist told us he thinks it’s her hip/femur. Ugh. Poor kid. She will probably see half the doctors in middle Tennessee before the summer! I must say, it could be so much worse. I will be happy for just my routine visits after all of these specialists.

Oh, and next month we meet again with her regular doctor where she gets another round of labs drawn. We had labs done this week to test her food sensitivities. We were hoping to draw enough for the other labs but she hadn’t had enough to drink for 8 vials. Imagine that. She’s 2.  The good news is that at least we can talk about her food sensitivities at her next visit, as food plays a major role in the whole autism thing. Especially for the gut-brain kids like Baylor. Healing her gut is so important to healing her mind. It is so amazing how God created us. I just wish it wouldn’t malfunction! Then again, I guess if things didn’t go wrong we wouldn’t get to see how He walks us through it, blesses us for it and shows us Who He Is while it is going on and when it is all said and done.

On a personal progress note, we are not making too much progress with words, but Baylor is understanding SO MUCH MORE. We are so thrilled watching her problem solve, follow directions from her teachers (and some for us) and make better eye contact in general.  She especially enjoys doing things we tell her not to do. I tell her to sit down on the table (I know, shame on me) and she starts to but then stands back up and smiles and laughs when I continue to tell her to sit down. The same goes for just about anything she is not supposed to be doing. Drawing on the walls when Ainsley leaves a marker on her table, chewing Ainsley’s picture cards and showing me what is in her mouth while laughing, etc. Once I tell her not to do something once, if she goes back to the same spot later, she does it again and waits for me to react. I must say, I kind of love her naughtiness. That means she gets it! Baylor is such a little fireball and we love it. She is on week 6 of Methyl-B-12 and we’ve really been seeing this progress in the last couple of weeks. So excited!!!!

Please keep praying. We love your support, your comments, prayers and getting to see you! Thank you for blessing us. I will update again soon!

Eye Doctor

Not long after I posted last, Baylor's occupational therapist asked me if we'd noticed Baylor's eyes. I'm a bit dumbfounded as I ask why. Well, her left pupil dilates differently than her right. I look at her and sure enough she's right. What the heck does that mean? I really have a love/hate relationship with Google. You know I'm going to look that mess up. But first things first.

I immediately call my eye doctor, who is conveniently not there and then send a message to Baylor's doctor asking what to do. He sends me a message and says he referred her to Vanderbilt's Pediatric Eye Center. I wait 3 days and call Vandy. They have nothing. I call back the first of the following week. Nothing. So off I go harassing Bay's doctor's office. The girl at the front, Brittani is amazing. She drags Baylor's referral out from the bottom of the pile and spends an entire day calling to get her in. The next day she gets through and now the appointment is set a week out (today.) Yes, she is such a God-send and I love her dearly.

Back to Google. I type "different pupil sizes, children" and guess what pops up.....neuroblastoma. Yep, brain tumors. Awesome. Second most popular thing it mentioned was brain damage. That's great, too. Now we get to wait a week and a half to find out. But that's the funny thing. The Catherine-past would have totally bugged out. Sure I have been concerned, but entirely at peace. A peace I can only describe as having the God of the Universe hold your heart. Both Stephen and I have been so peaceful since the start of all of this. I can't tell you what a blessing that is. I even had my own random appointment today and my blood pressure was checked and was perfect. See, proof. Now, about that appointment. The office called early this week to say it could be1-3 hours. Good times.

Baylor hated it. She yelled at him while he looked at her. This doctor was the "chief" of the large office which was really nice to know. After a quick look over he tells me what things can go wrong with the eye. He mentions what brain damage looks like and how that look can be seen in children when they are about to die. Um, seriously, does she have that? He says, "Oh, no, she doesn't have that." Okay, thanks for that scare and depressing information. Then he tells me he sees damage in the eye in children on the spectrum from major things wrong with the brain. I'll be honest, if anything that's the worst I thought I'd hear. But he doesn't think it's that either. So he thinks he should do a dilation test just to make sure we don't need an MRI. Twenty minutes later Bay is looked at again and he tells me her eyesight looks great and that he sees no structural damage that we need to worry about right now. Obviously if anything changes we'll have to do an MRI, the whole workup but right now she looks great!

On a side note, the shots are a blast and she totally has some issues with night waking again. Yep, a few hours of bouncing around a crib for hours at a time or waking up so early (4ish) and not going back to sleep. On the bright side we get a night peppered in where she's so exhausted from not sleeping the night before she'll sleep through the whole night. Hopefully in the next few weeks we can start to see some good effects from me torturing her with a needle and her torturing us with being up all night ;)

I will leave you with one of God's awesome promises to those who are saved:

John 14:27 ~ [Jesus speaking] Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.

Methyl B-12

This autism-spectrum thing is a bit of a "next step" piece of work. What I mean is that we work on one major supplement or therapy at a time to find out what works and what doesn't. Nothing is a guarantee. What works for one child may not work for another. Trial and error keeps you on your toes. As if having a toddler did not do this in and of itself!

Methyl B-12 is considered an amazing piece of the healing puzzle for pulling kids up and some out of the autism spectrum. This is not an overnight process. If it works, it starts showing results in as little as 2 months and moves on from there. We are looking at years. But this supplement given by syringe every 3 days for up to 3 years has done amazing things for the majority of children on the spectrum. Let me back up a second.

Autism is defined so many ways right now. The people who write the books on how humans are diagnosed, Diagnostic and Statistical Manual (DSM), are working on changing it as we speak. So who knows what will happen in the future but as for now autism is a spectrum of behavioral issues that get their definition based on how your child's issues present. Some children are flat out considered autistic, while some still have autistic symptoms but are classified as Asperger's or have Pervasive Developmental Delay Not Otherwise Specified (PDD-NOS).  There are others, but I am not proficient in all the diagnostics (or any of this for that matter!) so I will only tell you what I know and if you'd like to know more you can go find it :) But back to Methyl B-12.

Children on the spectrum have made continued life improvements while on this supplement. For some, a negative set of effects and they did not continue. A vast majority swear by it. We had started Baylor on this supplement in the sublingual form back in December. We saw huge improvements back then, but we were also giving her oxygen therapy so we don't know if it was oxygen or the sublingual tablets or a combination. This shot form is supposed to be a lot more effective than the tablets, so we are very hopeful that God will use this to help catch Baylor up and help pull her out of falling anywhere on the spectrum. There are many other supplements and possibly prescriptions along with therapies we continue along side these shots.

Some of the side effects sound fun.....sleep cycle disturbances (as if that were not already an issue), hyperactivity (check this box, too), that kind of thing. Some can get aggressive but that one is not widely reported. These can last up to 6 months. So if we seem like we are not getting any sleep, we probably are not. If it helps her, it is worth every inconvenience and dark under-eye circle.

We started these shots Friday night. Um, I'm not a nurse. Most of you reading this know a little bit about my personality ;) I absolutely love nurses, but if the world was made up of a bunch of me, we'd have none. I had to read articles by doctors and watch a youtube video and then inject my child with a needle. Terrifying. The shots go up under the skin, not in the muscle, but she is not exactly a still child. My heart almost came out of my chest but we got through it with the help of a lot of prayer and a chocolate cookie. We came through it with no tears and freaking out only by me.


We have already seen such amazing improvement, we are so blessed! It may be age 4 or 5, 8 or 10 when she is healed but we fully believe God is going to heal her. He has amazing things planned and we get to ride this roller coaster securely, thankfully and peacefully in the arms of Jesus. Please keep Baylor in your prayers, as God moves and will continue to move.



So off we go on the Methyl B-12 trip...........