2015-2016 School Start

Summer went by so quickly. I honestly think it was the fastest summer we have ever had. We filled our days with a few camps, VBS, the pool, a family visit among a few other things. Then poof, it was gone.

We gave Baylor the summer off of therapy. No speech, no OT, no summer school, nothing taxing. Her one camp was an all day camp for a week and she handled it like a champ. I figured after that she would probably handle kindergarten days pretty well. I finally had to come to terms with the fact that my shadow was going to be gone as shadows fade with the going down of the sun.

The week before school started had an official meet your teacher day and drop off school supplies with the rest of the 800 elementary school kids and the collective massive families they all come from. I mean, who doesn’t have at least 4 kids these days? It is always an overwhelming event as everyone crowds to see one wall of class rosters and pushes through the sea of humans to drop off school supplies and get more paperwork from the teacher. This year we had grandparent help as we had to bail and take Ainsley to Vandy for an MRI that evening to approve a growth treatment plan.

A week later, Baylor starts her first day of kindergarten with a fresh team of people in a very different school set up as the past three years of the early childhood program at the same school. I’m a  wreck because my baby who is not able to tell me anything other than requesting her basic needs is going to kindergarten. She is set up in the regular classroom with a few different aids that assist her all day. I kiss her goodbye and up to Vanderbilt we go to see a neurosurgeon as Ainsley had a spot on her brain we needed to discuss. We had received the call the day after the MRI telling us they found a spot on her right front lobe the size and shape of a pea.

I should have been a complete disaster but my God kept my heart and mind at peace like nothing I can experience with my own doing. We brought our petitions to Him and we know He holds our future and our victory in this life. Vanderbilt has great pediatric departments and neurosurgery is no exception. Unfortunately right before we were to see the doctor he was called into emergency surgery. However, the student came in and talked with us for a while and showed us the images. Sure enough she’s got a spot. The good news is they are not that concerned as they believe many people have these gliomas and they most likely won’t cause any problems. It is a good shape and a fluid color so they are not super concerned about it right now. We take the wait and see approach and follow up with another MRI in 6 months to check for growth.

We make it back to school in time to pick up Baylor and her teacher brings her out and tells me her day was horrible. Awesome. I had a feeling it wouldn’t go smoothly as there was no visual schedule set up for her and sure enough I was right. Her teacher and special ed teacher were freaking out. I was incredibly unhappy with the whole situation. I called for a meeting with the head of autism consulting in the county and the new speech therapist and new special ed teacher. We met a week later (last week) and things had gotten much better in the meantime. Right now everything is ok but there are a lot of spinning plates in the air regarding her education and making sure she is taught the way she can understand. She is an incredibly smart girl and she has all the ability in the world to learn and succeed but she has to be taught differently. It goes with the autism saying, “Different, not less.” There is a very sweet staff that is working hard with my baby and with me to help her succeed.

Lovingly the school added a program we started with Bay a month ago called GemIIni to her day. She watches these videos on people speaking words and showing picures of the word (ex. snake, cow, dog) and you play them over and over for a week and then switch up. She has very much taken to these videos and is repeating them and we can already tell her words are getting clearer as she practices! We are very excited she is responding already!

Prayers for my girls school year would be much appreciated along with a great report on the next MRI for Ainsley. On the health front for Baylor, we picked up homeopathy again just a few weeks ago and hope to follow it out to the end. No stones unturned.

Thank you for keeping up with us and believing with us for Baylor.

“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and minds in Christ Jesus.” Philippians 4:5-7

Team Baylor

It's About Time

This title is kind of a catch 22 for me. It's about time I wrote another entry and this post is about time in the sense of the where we are this month, day, year, hour, minute. 

Sometimes I wonder if time will sort out life itself. I want with everything in me to just KNOW how the full life is going to look for Baylor. My heart longs for her to understand the deepest feelings she has and grasp to the fullest all God has to offer her. I want to see her thrive and not struggle. Her anxiety and inability to always understand that I have her best in mind and I am not walking her into harm's way breaks me. Not being able to communicate fully and her comprehend fully leaves her terrified and my heart heavier than before. But I know better.

I know she is a pretty happy little girl. She does not mind hours outside dropping dirt and jumping on the trampoline. Bay really likes school and her sweet friends whose parents jumped on the opportunity to stretch their children's hearts and minds. I could not thank those parents enough for empowering their babies to be better human beings. My daughter loves quite a few of them and they love her. School has been an amazing place for our B. She sure is giving them a run for their sanity right now with her shenanigans. I never thought I would have two meetings in one week with both church and school to try to correct my pre-k daughter's behavior. That girl is smart. Too smart.

Her sassiness knows what she can get away with and with whom. She understands so much and she needs to be challenged in a way that inspires her. She had an amazing opportunity to be challenged with the most beautiful therapist we could have ever had the privilege to work with. Bay's time with KidTalk was amazing. She had 64 therapy sessions with a brilliant, loving and Baylor whispering woman. We hear so much more language echoed back to us, and a little more random answering of questions and statements. We are starting to see a little bit of conversation! Not surprising she is best when she is mad but she sure is trying. I am so sad this time is over but we anticipate more time in the future with the first person outside of us to 'get' Baylor. Her time with Vanderbilt gave us the opportunity to meet the creators of the software she used in her research study. Those kind gentlemen from Amsterdam gave her the software after watching her use it. Now she takes her iPad to school and uses it to communicate. What an amazing blessing!

Another amazing blessing this year was using homeopathy. Homeopathy is one of the most misunderstood mysteries I still cannot wrap my head around. I not only watched the healing take place in Baylor's life, but I happened to participate in the healing, as well. Stephen and I took our lack of understanding, but God-directed path of homeopathy, and learned a bit about prayer and about who we are in Christ. Then God. God blew our minds with answers to our prayers. Sure, we do not have the total healing at this moment we would so love to see, but God breathed on Baylor and touched her in response to our prayers. I mean, who are we that He'd love us that much to show us Who He Is? But He has. He will. I am in complete awe of my Abba and Yeshua. He fills me with peace, joy and freedom that I can find no where else and in no one else. My God is so amazing, I can only imagine how He touches Baylor's life and I am so completely unaware.

Being unaware can be such a hard place to be. You strive, you try and wish and pray to understand it all but you cannot. Maybe you and I are not supposed to because it would alter who we become. Maybe it would take away the beauty of the moments leading up to the grand finale. I am learning so much about patience. About waiting. My God, He knows I hate this waiting game. I trust Him. When I lose that footing I go back and find it. Sometimes He takes a bad week or a bad month and waits until I drop to me knees and beg Him to take full control. Not the half-ass pretend it is the full monty control I pretended to give over. The full thing.

So after a few really terrible weeks I finally realize I am trying to control. Seriously? I thought I handed that over a million times. I had not fully done that. God does not want part of our affection, adoration, life, or anything else. He wants it all. So I laid it fully at His feet. I do not remember when that was but I let go spiritually and physically. I slacked off on the SCD diet (which was great for her, btw), stopped putting my hope in the beautiful package of supplements I had received, etc. I stepped out in faith and let God have control. Would you know that she is doing better than ever? I am gaining more peace in thinking about her future. I still have moments of trying to pull back, trying to gain control. I am not perfect, never will be. I am trying, though. Trying to put my feet where my mouth is. I know Christians are considered hypocrites and i hate that. We are just sinners trying to do what we believe and sometimes miserably fail.

I have noticed I can be a hypocrite without even realizing I am doing so. It took me a few years to realize I was not really trusting God. I was only partially doing so. Wow. How humbling and how freeing the moment you pass the proverbial baton.

This leaves us to today, this time in the story already written. How beautiful a picture for me to hope in. My God has written our story, and He works it out for our good. We are just a chapter in it right now. If nothing changes, to God be the glory because great things He has done. His love is steadfast and faithful and sometimes I have to sit back and wait. Be still and know that He is God. He is enough. And her smile, her dimples, baby blues and precious arms that reach out to love on me. Who am I that I should be so loved?

Never quit believing His promises,

Team Baylor


Sent from my iPad

Healing

It really has been entirely too long since I last posted about Baylor. The last blog post was not much of an update so this may very well go on for a while! For sake of understanding where we are this September, I will drag you back to where we left off the entry before last - right after giving Baylor antiviral therapy (Vitamin A) in January.

I am going to be very honest with you about her time deep in her PANS episode (beginning of December until mid-January). I handled that month and a half about as poorly as I could have. Despair and darkness completely overwhelmed me and I literally cried more in that time frame than I have total in my entire life. I lost my focus on God’s character and faithfulness and the fear was all consuming. God lovingly gave Stephen the words to explain to me what I was allowing to happen in my spiritual life and what I needed to do about it. Humbling to say the least. I promise this is important to her update just bear with me! So I took my doubt and my brokenness to our forgiving Father and the all-day crying and hopelessness vanished and He restored my soul. I cannot say I passed the test well at all but I learned a lot from it. I may have gotten a D- on that trial but what I learned will not be taken away from me and I will use it for the rest of my life.

Upon my return to entrusting Him fully with Baylor, He brought my attention to a passage in James. Verses 13-15 say, “Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing psalms. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven.” James is one of my favorite books and I have read it quite a few times but never remembered this. Short term memory is what I am best at, sadly. My first thought after reading this was, “Where are we going to do this?” Stephen and I had not found another church close by we desired to be at and my heart kept tugging at me to mention to him that we should take her to the elders at Grace Chapel. We were not attending at the time but Stephen agreed that we should ask them.

Contacting a church we were not members of much less not attending to ask them if they would pray over our daughter seemed odd. We were involved with Grace until Baylor kept getting sick all of the time and we found it best to keep her out of the childcare. We had been out of the church building for 3 years. I was not sure what Grace would say to my request but as the saying goes, luck would have it (even though I don’t believe in luck I believe God orchestrates), the church was having a healing service the following Tuesday, February 18. The most amazing pastor, Ron, talked with me about our situation and I explained everything to him and he did not have any reluctance in including Baylor in this service.

This was about a month after we had given her Vitamin A, which drastically helped her but did not take away all her visual disturbances/seizures. It lessened it quite a bit but did not eradicate them. I scheduled a neurology appointment because of the seizures but could not get in to Vanderbilt Children’s until early September. Good thing they were not grand mal seizures, as that is an exceptionally long wait. Our doctor saw Baylor in January and believed as we did that those visual disturbances were seizures. Eyes rolling back, eye flutters, long blank stares, involuntary arm and leg movements while this was happening, the works. They never lasted long at all but disturbing to say the least. Back to the service.

We really did not know what to expect except we were following God’s direction and bring our daughter to Him. The pastor I spoke with prayed over Baylor and anointed her with oil. We left that evening and put our girls to bed. The next day when I went to get them up, which rarely happens as they need very little sleep to get their systems going at full tilt, Baylor had thrown up overnight. How strange, my little is really not a puker. She did not seem sick at all the next day. She ate just fine and went about her business. I remembered that I had read that vomiting can be a healing reaction. Could it be she has been healed of something? After a week or so I noticed that I had not noticed any seizures. She was not on any medications at the time as we were on a break for her liver health. I am thinking, “Did He do it? Did He take away her seizures?” Maybe it is too soon to tell. I may not be ready to let this cat out of the bag without tangible proof. I am already looked at like I am a few sheets in the wind crazy so maybe I should wait a bit.

I get that call to remind me of my upcoming appointment with Vanderbilt neurology and I am really thinking we should just skip it. I think she is healed so why bother. Then I thought about the proof for everybody else. The proof would be a clean EEG. Poor baby, we held that girl down and strapped all kinds of wires to her head and made her lie still for an hour. If you know anything about my kids you know they can barely hold still two minutes, much less an hour. She fought like Mike Tyson while hooking her up, but she did a great job of being calm and lying still once she was all hooked up and wrapped like a mummy. That was grace from above for sure.

The next morning I get two calls from Vanderbilt right in a row that I missed. I call them back and leave a message. Finally the phone tag stops and they tell me she has a very clear EEG! No signs of seizures. Here I have some tangible proof that my God, the One True God, heals. How amazing is that?! How beautiful to be shown such mercy and love!

What is also wonderful is this new journey we started in May. I mentioned before that we were considering homeopathy and God just made it clear to Stephen and I that we should go down that road. I had done a very small amount of research in the past on homeopathy and have read a few names from some other warrior parents over a year ago and the one God brought to my mind was Rudi. Without hardly any research but God’s peace we start Heilkunst with a guy with a big reputation out of Canada.

Then I started to look into what we were actually doing. Energetic medicine is the second leading form of medicine used worldwide. What a ride this has been! I am not going to give too many details about it but we are watching it work! 

She has been making some great gains and we are in awe of this new venture. Everything the office sends us we pray over before we give to her. We then sit back and watch her go through the remedies and have her healing reactions (negative physical reactions that are temporary, much like the time she vomited after her anointing except sometimes it is wild behavior or a rash, etc.) and watch her make gains. They suggested I get treated alongside her as this is an energetic form of medicine and we affect each other. We plan to add the rest of the King crew to this healing modality but for now I experience a good bit of what Baylor does.  Ainsley is even getting in on some of the reactions and she is not even being treated! Our experiences are not exact as we are very different people but for me it is really nice to experience some of what she has to go through.  That girl is a trooper.

Baylor is enjoying her dance class, open gymnastics play, afternoon school, most of her therapy sessions, church and outside play. She loves music, trains, dirt, numbers and playing on her iPad. She is an absolute joy and loves her family, especially her sister as she is the only name she will say after her I love you response. Please keep praying for her and us as we help her achieve the best she so deserves. He hears us and answers. We love you all! 

Blessings,

Team Baylor

For my fellow Warrior Parents

I wanted to address my fellow parents, grandparents, siblings, best friends, teachers or therapists who may be trying to help the quality of life of a precious person who is affected by autism. You all are amazing and your work for your loved ones is not in vain. Keep searching, keep trying, and never ever give up. They are worth more than anything else you could do with your time and energy.

Thinking back on the past few years of our journey I was trying to decide what the biggest intervention we have done thus far for Bay. The answer was crystal clear as we took a not-so-welcomed trip down memory lane recently.

We have changed the way we eat in this house more times than I would have liked. Both times we changed our eating habits it was worth the complete hassle of it all. The first time was when we knew Bay was sick but no official diagnosis and we had not seen a specialist. I had a book on special diets for kids with issues ranging from ADHD to allergies all the way to full blown autism. I remembered we had it (as our oldest had some sensory issues and the book caught my attention) and we decided why not? We were willing to try anything to help her. The book said give the gluten/dairy/soy free diet at minimum a few months.

Ick. A few weeks or maybe one whole month was not enough? How am I going to do this? It is expensive and everything has gluten in it! Lifestyle changes are hard. The new task is daunting. I now have to get rid of pretty much my entire pantry. I am hot or cold when it comes to major life changes. For me, I had to throw it all out at one time and start with the basics. There are many ways to ease into this diet but getting rid of it all at one time was the way for me. Not to mention you cannot just decrease the amount of gluten and dairy, you must get rid of all of it. Check your toothpaste, shampoo, everything. If it goes in or on your body it has to be gluten free or this trial will not work.

Within two weeks we noticed drastic improvement for our baby. She actually slept through a few evenings in a row. Before we were up at 1:00 a.m. until 6:00 a.m. Every. Single. Night. It was so completely horrible. She laughed and bounced around all night, no end in sight. My husband and I took turns but how can the other even sleep well worried about the party going on in the living room? Our girl started to join our world a little more, was less hyperactive, paid attention to a few toys, and we even heard her voice again after she lost it. This new diet? It's on.

We have been on this diet now for over two and a half years with no infractions of major proportion. Until a month and a half ago. There was an oversight in her new environment away from home. They gave her......Animal Crackers. An entire helping. Oh, man. We were so upset. The next day she was spinning in circles and staring at ceiling lights and fans, humming non-stop, refused to let me touch her, laughed when she was not humming, reverted back to her own world completely. We had just gone through a major setback a few months before. At least this one only lasted about a month. Even her teachers and therapists noticed a huge change in her. They all asked me before I even told them what happened. I heard from one therapist after she explained her session with Baylor was not so good (and I told her she had a food infraction), "She seemed more autistic today." Yep.

No one can say if this is going to be as drastic for your child as it has been for mine, but is it not worth trying to see if it helps? It is a non-invasive therapy you can try and there is so much information online you will not be lacking in recipes or support. There is a lot of information on the internet about the gluten/dairy/soy/casein free diet. One of my favorites is www.tacanow.org. It stands for Talk About Curing Autism. Fantastic site, I suggest you all go visit. I also recommend The Thinking Moms Revolution. Google them, too.

No one is saying it is easy. The searching for answers and options, deciding on those findings, fighting to get what you want, actually executing your life. It is an all consuming job. There is never enough time in a day much less the energy. And no one gets it. Nor should they. Some days, weeks or months you feel like you are barely keeping your nose above the waves long enough to take a single breath to keep going before you plunge right back under the water. But the sweet child in your life affected by this condition might really truly benefit from this. You would do anything to help them and this is something you can actually do. And as a side note, when you find the right gluten free products you like, you will find this is not so bad after all.

Much love my friends and keep fighting.

Team Baylor

Requests

I actually think this may be a fairly short post. Not a whole lot has changed as far as knowledge on what we know is going on with Baylor, but we do have confidence in the direction God is leading us right now. The only thing is we are in a waiting period. Aren't those fun?

Where the update comes in is that we have two specific prayer requests for her and I will give you the Cliff's notes of why and it will explain what we need.

We received her results from all her labs and her doctor says he has never seen anyone with numbers as high as hers in his 30 years in practice in the viral category. So, we give a prescription for over a year that has been shown to greatly help the viral load she has. This in turn helps rid her body of the viruses that are being linked to psychological problems. Sounds straight forward enough. Super high titers (markers) are not good and really do a number on organs. Especially the brain and spine. Specific prayer request number one is for this prescription to help her in tremendous ways. We are waiting in anticipation of great things. He promises to give to those who ask (Matthew 7:7-11). It is just on His time table. So here we go, or wait, or whatever. Always moving forward in this marathon. We go from super high numbers to some super low numbers. Nothing like extremes.

Her labs for her immune system function are extremely low. So low that our doctor believes she needs infusions called IVIG. Bay is missing an immune protein in her blood that helps her fight illness and disease. This protein is missing in people with autoimmune diseases, cancer, HIV, MS, etc. She obviously has some but not nearly what she should have. This is why she is sick all of the time and I am super psycho about germs. Well, part of the reason I am psycho on germs. I am sure this is what opened her up to the PANS. And how she came upon a horrible immune system in the first place? That is a whole different blog post I will get to when the time is right. Anyway, she would have this infusion once a month and it would take quite a few hours. That sounds like a piece of cake but we know she needs it. Teensy problem. Our insurance is likely to deny because this is a $5k-$10k an infusion bill. She needs a year or two. We have the labs but insurance hates to pay. Surprised? I did not think so. There is specific prayer request number two. For now, just prayers for approval if it is God's will. We know that if He wills for her to have this it will happen. He listens to our prayers, make no mistake about it. His will is always going to happen but His means of getting there can change. There are lots of Biblical examples and if you want them, shoot me an email. Once we get approval we will pray for how to hold that baby still with a needle in her arm for three hours. Medical weed, maybe?! Haha. No, seriously. I have no idea how that would work. That request is for later.

Well, she is a happy love who is singing more and engaging more in school and therapy. She hates a change in school schedule and will straight up scream and lay out in the hallway if it is not to her plan. I love a strong spirit! I hate she needs it to be so strict. We are about to start a new church (well, our old one we love so much) and pray she handles this change! We have a long way to go in her healing but our Healer, Jehova Rapha is good. He is always good. Thank you for following her journey. To Him be the glory.

Thank you for your prayers. He'll answer. Just watch.

Team Baylor

New Diagnosis

It is a new year that holds new things. People tend to focus on the future and make goals to strive for. Each year holds both the good and the bad. No one gets to be exempt. Just because something appears to be bad does not mean that good will not come from it. Those of us who are under The Authority have a beautiful promise I am sure I have mentioned in a past post. I will remind you. "And we know that in all things God works for the good of those who love him, who have been called according to his purpose (Romans 8:28)." That being said, this year has not started out the greatest for Baylor but I believe God will use our knowledge of her health to lead us in ways that will help her feel better and have a happier life. I need to back up to November and give you the back story to her new diagnosis.

Poor baby caught pneumonia over Thanksgiving and then then right before Christmas caught Roseola. Roseola is a high fever virus that runs a few days and then a lacy red rash appears over the body. Most people who do not have damaged immune systems (read gut/brain theory) can rid their body of such a virus in a matter of days. Baylor cannot do that. Everything seems to linger with her because her body is not strong enough to fight quickly. After this last virus (which happens to be in the Herpes family) Baylor had a new reaction.

She panicked in the car every time we came to a stop, screamed like someone was stabbing her when we would pull off the interstate or stop at a store to go in. Previously she loved car rides and begged me to go "bye-bye" and handed me my purse because she was bored at home. Shoes and socks had to "tok off" at all times (yes we have had record lows this year in temperatures in middle Tennessee) or meltdowns would follow. She would beg to be held and once you held her she would continue to beg to be held. She cried all the time. Her gaze would wonder all over like she was on drugs and would hum non stop and then shriek. Her constant state of being was misery. I absolutely lost my composure (and most likely what was left of my mind). Where did she go? What happened to her? Why was this happening to her? God, why? Has she not been through enough? Have we not been through enough?

Honestly, I do not know the answers to but the first set of questions. I do know that my God is good and He loves our family and He has good things for us. The other questions may never get answered on this side of eternity but that is okay. I trust in His plans and in His unchanging character so readily displayed for all who care to know. I love how He will give us wisdom and guidance if we request it. I had that feeling like her symptoms described PANS but I was really hopeful I was wrong.

 Her new tics, new obsessions, irrational fears and visual disturbances that happened overnight describe PANS/PANDAS. Pediatric Autoimmune Neuropsychiatric Disorder and the latter adds Associated with Strep. We do not know which one she has yet but we are treating the PANS right now. We did a high dose Vitamin A protocol over a period of two days which is why I asked for prayer over Facebook.

As I was writing my plea for prayer, I was standing on an elliptical machine during a very busy hour at our gym. Nobody appreciates people standing on work out machines NOT working out. You get super judged for stuff like that and I just did not feel like looking like that person. So I threw together my post and went about my business. I did not mean to worry anybody, I am very sorry. If anything super dire comes up I will give some fast updates and not leave you hanging. This explanation would have taken about forever for a status so I kept it simple. A little too simple and serious. I appreciate all of you who prayed and sent messages, texts, phone calls, etc.  Back to PANS.

This is an understudied disorder and there are quite a few protocols you can do. We have to wait about 3 more weeks before we can continue with our treatment to give her liver some rest. Guidance, we really need guidance. Homeopathy is another option as is some very invasive trials with treatments that go into her blood. Obviously we prefer the less invasive options but we want to be open to where God wants us to take her. The gracious gains from Vitamin A:

1. She is singing songs we have never heard her sing before.
2. She lost the super odd visual glances.
3. The humming and shrieking stopped.
4. Imaginative play has gone through the roof.
5. She is enjoying reading and identifying pictures along with answering "Where is _____" questions.
6. She is overall much happier.
7. Not obsessed with shoes and socks off at all times.
8. Her sessions with Speech and Occupational Therapy is at an all time high with joined attention.
9. She is engaging in side by side play with toys the other children are playing with as opposed to going off by herself.
10. She is enjoying big sister more.
11. Car rides are much much better, as well as store visits.

We will continue on the biomed path we are on until God opens the door for something else. Any and all continued prayer for Baylor and her healing and wisdom for us as we hold her and try to help her all while laying her at the feet of Jesus. We praise Him for all He has done and all He is going to do.

Thank you for reading, thank you for praying and thank you for your love.

I hope 2014 is filled with a remarkable journey you can grow and be joyful on.

Because He lives,
Team Baylor

40 Days

By the time you read this we will have been on the Specific Carbohydrate Diet for 40 days. That is a miracle in itself. I am telling you, I kicked around this idea for an entire year before we decided that it was the path God was leading us to. I spent two weeks prepping and one day gutting our house of everything it stowed in the food department. It looked like we were moving. I prayed and I prayed and I laid it at the feet of Jesus.

Yep, I talk a lot about my faith. It is the single element that has held my shit together. It is the air I breathe and the direction I seek. It is everything to me. So keep that in mind as you read my blogs. They will be loaded with this kind of content. But honestly, when you continue to watch what happens, you will give Him the glory just as we are no matter what you believe. It is not what we do but what He does through us.

I spend anywhere from a minimum of 5 hours in the kitchen to almost 10 some days. I  make everything from scratch and my amazing husband brings me almost all of my goods to do so. He does the shopping now and I must say I really love it. I do a pick up here and there but otherwise he took that job. He is wonderful. We eat meat, fruit and vegetables. We have the occasional meringue or frozen coconut oil treat but absolutely no starch or grain and no refined sugar. Let me list for you some fabulous things our Healer, Jehova Rapha, is doing though this crazy diet (and in no particular order).....

1. Around day 30 she decided she wanted to potty train. We are still working on this but overall has been so much better than I could have imagined. It has been almost a week and she has very little accidents.
2. She falls asleep so much easier than she used to.
3. So much calmer.
4. Within one week she was able to focus on a task up to 10 minutes where as before it was maybe 2. Maybe.
5. She asks for help when she needs it now. Never did before.
6. She can label all the alphabet letters (if she wants to!)
7. Flip through books and point at pictures and name them as well as count the items in counting books.
8. Sing and participate in motions in class songs at circle time.
9. Greet our dog by name when she comes in the room, pet her or try to ride her like a horse (all new).
10. Follow directions from adults much easier and very quickly. So impressed I could take pictures of her and Ainsley. She actually looked at the camera and said "cheese" better than Ainsley!
11. Spontaneously requesting things like food items or games (still slow but there is improvement).
12. Answer yes and no questions.
13. Talk back with a sassy sounding "NO".
14. Wait her turn.
15. Transition better.
16. Thanks to my terrible allergies she tells me to, "Blow, Blow".
17. I asked her to join Ainsley and I coloring and she stopped what she was doing to color with us (she is not that interested in art to say the least), and I asked her for the black marker and she found it and took the lid off for me and handed it to me. Stayed with us for almost 15 minutes.
18. We all met new cousin, Gabriel (4 weeks old), and was so interested in him, touched him gently on his head and leg like I told her to and then she kissed him on the chest. So sweet.

I could keep going but I wanted to give you the idea and wanted to have it in writing for the proof. I forget everything almost and I do not want to forget all she is doing new right now. This post is for you but probably more so for me to have this to look back on.

This road is hard and it is so isolating, but it is so worth it. Oh, and on a beautiful side note, my kiddos are eating vegetables and LIKING them. They eat squash, zucchini, asparagus, avocado, green beans and carrots. We add one thing at a time so we will eventually have them even more well rounded. Muahhhahhhhaaaa. Ainsley earns her stars for each meal and at the end of the month is rewarded with a nice toy of her choice. Bribing is great. I wish I got that excited over stickers on a chart, for real.

A huge thank you to my family who came to the Walk Now for Autism Speaks 2013. Thank you David, Jenn and Gabriel Blumberg, Katie Garlington, and my parents Leo and Tricia Blumberg. Having you there means so much to me and I know my girls will not forget. The more the merrier my friends, come join us next year! We always have a big party at the house after and it is a great time. Please keep my Father in Law in your prayers as he is undergoing chemo/radiation. He and Ann could not attend because of it. We are all in this crazy world together so let us not forget to lift each other up.

We are working on a speech evaluation next week so please pray that we are with the right therapists and the right amount of speech will be recommended to help our sweet girl. Thank you for reading, thank you for caring, and most of all we thank you for praying.

Much love and blessings,
Team Baylor

Flash cards

This update is just a quick one to show you what Baylor did yesterday. I truly believe it is in response, a show of His mercy and goodness, to prayer. I am reading a book called The Circle Maker by Mark Batterson. It is a New York Times Bestseller and written by a pastor about prayer. It has been very inspirational (as cliche as that sounds) and has taught me some really cool things so far. So I have been acting on some. I am in no way close to done praying here but after actively praying yesterday morning around the perimeter of the house a few times (7 to be exact, and yes I looked insane to my neighbor who was outside I have no doubt) I caught Baylor in her Son Rise therapy room and recorded it for her Youtube channel.  She did this at least 3 times for around 5 minutes at a time yesterday evening. Thought you might enjoy some of the fuel to my faith.


http://youtu.be/KUmrtsdHGbI

A really cool verse a pastor gave to another couple who had a son who regressed like Baylor did the following verse when they prayed together:

Isaiah 59:21 ~ And as for me, this is my covenant with them," says the Lord: "My Spirit that is upon you, and my words that I have put in your mouth, shall not depart out of your mouth, or out of the mouth of your offspring, or out of the mouth of your children's offspring," says the Lord, "from this time forth and forevermore."

My husband and I are part of this offspring so this must mean this promise is for us, too. I will take all the extra great promises that are meant for whoever chooses to follow Him.

Keep watching and keep praying for Baylor!

~Team Baylor

This Momma's Feelings

I have desired to write this post for a while now but needed the right moment. I have so many feelings about life, my girls, autism in general. It is so easy for me to jot down everything we are doing and the progress we are making through the decisions we have been led to that I almost completely ignore the emotional and spiritual side of this life in my writing.  I do not plan on writing my feelings every post as that is not the goal of Baylor’s Journey. It should play a part but not dominate so maybe I will write more from my heart and show you another view of her journey from outside perspective.

The last two years have rocked our world. By the time I realized (because I did long before anyone else) Baylor was different I found out I was pregnant. Five months later I had the rest of our close family and friends convinced she had autism and we started to get her evaluated. I also had an appointment to find out we had to deliver our third baby who already had entered eternity. Our hopes and dreams for Baylor were in complete uncertainty (or so we thought) and we had to break our Ainsley’s heart and tell her she was not getting another sibling. It is devastating to watch your child suffer and not fix her immediately, know that there are things you should be doing although you only have 1,000 options and no clear cut answers. Your other child essentially has no sibling as she tries so hard to play with her sister that wants nothing to do with her and you fail to give her a friend in the family. Things you do work some do not, and nothing is going as smoothly or as quickly as you want them to. 

You throw yourself at God’s mercy to find enough strength to get by and you listen to the song “Not Alone” by the band RED to remind yourself over and over again that you really are not alone.  It is on repeat and you realize you are not alone in this and you are loved beyond compare. The song will forever be my favorite. But why then does the world have fall to pieces all around me? I am His and He is mine. This will make me stronger, love more and be who I am supposed to be. I can do this.

Time goes on. Therapy keeps you so busy you hardly have time or energy for anyone or anything else. You look to God but only part way. You only want to give Him some control because you do not want to give it all because, hey, after all you should have listened to your gut and thrown major fits based on the voice inside you that always told you to go against the grain and demand what you feel is best. You need to make sure you do not mess up again, trust the wrong doctors again, not listen to yourself again. Talk about mommy guilt. It is not supposed to be heaped on your shoulders but you find yourself doing it anyway. 

On top of guilt is the overwhelming feeling of needing to help your child while they are still growing. You feel as if you do not do everything you can right away, the healing and the help won’t either. You cannot risk wasting a single second of this precious time. That is one myth about autism and a major spiritual pit thinking you are the one that is supposed to be healing her. There are so many that a whole post would need to be dedicated. We try something, it fails. Her sleep is horribly disrupted to the point that you cannot hold a coherent thought in your head much less speak or carry on conversation because you only get 3 hours of sleep a night. No one can tell you what to do or what is going to work. You have to figure it out yourself.  That’s okay. We are a tough crew.

Paying for all of this is all on you, too. Nothing is covered and you refuse to not have your child get some services they need so you spend your “free” time looking for ways to get her covered. No one stresses about money though, so I guess I do not need to elaborate.

More time goes on and things are finally in a holding pattern. Another baby? Should we try this again? On a whim and we are pregnant with number 4 who was due a few weeks ago. I was so sick. I caught every virus out there. I truly worried for baby because being sick the whole time would surely hurt their chances of being healthy themselves. Then I caught RSV. It is a yucky respiratory infection that the doctors believed crossed over and made baby sick. Almost at the exact same time as before I delivered another baby into my Father’s arms. 

Really? Why? I mean, is something wrong with me? Am I cursed? Why would I not be protected this time? Have we not been through enough? Can I not have a child who would love to play with their siblings? I have some faith that Baylor will be okay at some point but how will I know for sure? Then my enemy gets louder. “Your God doesn’t really love you. Look, He wouldn’t even protect you a second time from losing another baby this late. There is something wrong with you. Your lack of total faith made this happen. This is all your fault. In fact everything is.” Then I spoke aloud.

“My God is nothing but good, nothing but Love. There is no evil in Him and I refuse to believe otherwise. I will hold to what I know and believe that He is everything He says He is. His character is written in His Word and I believe it all. And I will believe this forever, no matter what happens to me.”

You know, the most amazing thing has happened since then. For one the enemy left me alone. For two my Father took away my mountain of pain. Took it away in an instant almost. He healed my heart that was still bleeding from the 18 months prior. He replaced my pain with peace and with joy, and then He strengthened my faith. I needed 100% faith. Not 80% or 90%. He knew that and He gave me what I needed to get there.

 I am happy to say, 6 months later I do not doubt at all the beauty and the majesty He is going to shine through Baylor. He is doing it right now. The last two weeks have been the most amazing we have seen in a really long time.  His words and His promises are constantly on my mind and by reviewing them over and over my soul is renewed daily. I do not deserve this mercy. I do not deserve this grace. I am in a place now that I have never been in my life. The beauty of it is that it is for everyone. It is for anyone who desires to know Him and then looks to Him alone. 

Some verses I hold dear (not all because then I would be writing almost the whole book) and that I know without a shadow of a doubt hold true:

1.       For nothing is impossible with God.  Luke 1:37

2.       Trust in the Lord with all your heart, lean not on your own understanding, in ALL your ways acknowledge Him, and He shall direct your path.  Proverbs 3:5-6

3.       And we know that in all things God works for the good to those who love Him.  Romans 8:28

4.       What then shall we say to these things? If God is for us, who can be against us?  Romans 8:31

5.       Now faith is being sure of what we hope for and certain of what we do not see.  Hebrews 11:1

6.       Commit to the Lord whatever you do and your plans will succeed.  Proverbs 16:3

7.       He replied, “I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, ‘Move from here to there’ and it will move. Nothing will be impossible for you. Matthew 17:20.

 Keep watching Baylor. You are going to witness the God of the universe bless and transform her life. She is already is a miracle but there is one coming through.  That is what my God can do.

Updates (I am not any more creative at the moment)

What's going on. Hmmm. We are busy over here with normal family matters like Ainsley's t-ball league, summer play dates, a family vacation (long overdue) and summer break. Wow, that sentence sounded so, so normal!

On the non-average American household side of life we embarked on an awesome week long conference on a therapy Stephen and I can put together for Baylor at home using us and volunteers, part time summer school for Baylor along with speech therapy twice a week and ABA anywhere from once to three times a week. We also started a prescription called Low Dose Naltrexone to help strengthen her gut/immune system. We also just received a hair analysis kit to see how we are doing in the heavy metals detoxing through chelation.

Honestly, we really are not as far along with chelating as I would like to be at this point. We have done 22 rounds and we need a minimum of 100! I thought we would be plugging away every weekend this summer but between her low immune system and our bouts out of town this is not going as swimmingly as I would have hoped. I am assuming we will not see much change with the hair test from our metals test before but hey, you never know. Bay still struggles with leaky gut (awesome diagnostic name isn't it?) and we know that it will not heal with metals attached to all her organs. It is a marathon, not a sprint. It's a marathon, not a sprint. Ah, I am talking to you not me. I will go on.

So in tandem with the chelating we need to change the diet. Again. I am so not excited about this. I have however, been praying for guidance and after a long wait on this subject matter I feel we should take the dive and do a diet called GAPS with a splash of SCD. If you feel the need to google go for it, but the nuts and bolts are we remove all grains and complex sugars and I start cooking like the Amish. Do not be ashamed that you just cringed, and feel free to judge but this is what the majority of people who have had kids on the spectrum used to heal their gut and transform their lives. Why not try it? God apparently thinks I need lots of challenges. Darn that changing thing. Fine fine, but I need to wait until my kids are back in school and I have some volunteers with Bay so I can live barefoot in the kitchen like a good southern housewife. Or something like that. With this new diet comes needing new kitchen gadgets. Like a really nice Vitamix that will do almost all my cooking for me. I hear it is the best thing for cooking for this diet. So if anyone works anywhere they can get a good discount, please let us know. These things cost way too much but feel as it is a necessary help for this new adventure in healing Baylor.

Stephen and I just had a new adventure in Sheffield, MA. Bottom left hand corner of MA is a compound type campus that is called The Option Institute. My fabulous MIL and niece came up to watch our girls as we took a flight to NY, a train to MA and a taxi to the middle of nowhere north to learn a therapy that focuses on the social issues children on the spectrum have. Basically you set up a play therapy room where the most interesting thing is you or the volunteer and have toys up on shelves that you bring down to try and engage your child in. This is a very loving, very nurturing and non-judgmental mindset that you bring to join your child in their world and slowly get them to join yours. It is called Son-Rise and we are looking forward to starting this as soon as our room is finished and we can figure out a slow start until school starts in the fall. We met people from 23 states and 25 countries. We have family now around the world. Nothing puts you and your child in the heart of complete strangers or they in yours like autism does. We look forward to praying over their children and watching them grow. That was an amazing experience.

Yeah, so that is about it for right now. That is about all we can handle at the moment, Lord willing. Baylor has been doing very well lately. We are battling some new but hopefully brief side effects that should subside soon but otherwise she is communicating with us still and repeating a lot so we know she is trying the best she can. She is still only 3 but sometimes I think she is 13. Not because she is high maintenance or anything. Ainsley is the best big we could ever want and is so awesome to have around more this summer. I miss that lovely when she is in school First grade this fall. I am in awe of my blessings.

Please keep us in your prayers as we keep the pace on Baylor's Journey. We love you and appreciate your support in every way you send it.

Happy Summer 2013 ~ Team Baylor

It is Well

What an amazing little girl we have. Well, we have two amazing little girls. How blessed are we? The one is the best older sibling a little girl in a big strange world could have, and the younger sees the joy from her chaotic viewpoint of the world we all live in. And man, does she love her big sister. Ainsley has been nothing but calmly patient, consistent in engaging and proud in Bay's progress. Baylor loves to sit behind her on the couch every morning and watch her play Lego Batman before school, climbs in bed with her in the morning instead of getting in bed with us, cannot stand to be on the trampoline without her among others. Our family sure has had a rough go the last few years but we have been immensely blessed with love. Not only from each other, but from friends, family and most importantly our Savior, Healer and Prince of Peace (among many other wonderful names He's proved Himself true on). Honestly, I have never been so peaceful in my life than I am now.

God has blessed us with some breathtaking moments lately. We are currently on Round 20. It feels like a nice round number, a small indentation on this journey we are on. This week alone our baby has gone from singing only Twinkle Twinkle to one I could not recognize when I picked her up from school, Old McDonald, Wheels on the Bus and the hand motions to get me to sing Itsy Bitsy Spider. Her socialization is getting better, too. In case you all were not aware, the two biggest issues for ASD kiddos is communication and socialization. It is just so hard on them. They process the world and all that is in it so differently than you and I. I would love a day in her shoes so I could be a better mom. She has enjoyed her friend Andrew and attempts some to play games with him and have him join her on the trampoline and while she plays at her dollhouse. This is really great stuff!  She also has responded to requests in the negative, "I don't want to." Heck yeah, I will take your attitude if you use words! She wanted to leave 5 minutes after we got home the other day and stood by the car and yelled at me. I asked if she wanted to take a ride and she nodded her head yes. She has done the head nod 'no' for a while now. I like the yes. So I burned gas for an hour. My little likes change of scenery.

This love for change in routine has helped in her new transition to speech therapy. She started twice a week this past week with a woman I am convinced was hand picked by God for Bay. She has 30 years of experience and a fabulous laugh and a background compatible with a new therapy Stephen and I will be traveling in June to learn about so we can help her more at home. So currently she gets some speech and occupational therapy at school 4 mornings a week, speech 2 times a week and ABA 2 to 3 sessions a week. We are still doing the gluten free/many other things free diet as well as supplements. We are working hard to get legislation passed so all our kids can get therapy covered because right now most families with a kid on the spectrum are having a hard time because we get no coverage. When each hour is b/t $40-80 depending on the therapy, you can imagine what a strain this is. I could talk about this discriminatory crap forever but I will spare you.

I will leave you with the update that hope is alive and well here, God has blessed us and will continue to. One day at a time, one fabulous moment at a time. Expect God's goodness and He will strengthen you as you wait. We love your prayers and support and I will try to update more than quarterly. No promises :) 

Much love from Team Baylor in TN ~

Chelating and School

Goodness, a lot has happened since I last blogged. Baylor just finished round 10 of Andy Cutler protocol for  the chelation of heavy metals, and she started a new school that happens to be where Ainsley goes. We had a fun little family birthday party for Baylor and then we had Christmas. Poor girl was sick over Christmas so we did not get any good pictures :( We still enjoyed the decorations, music, family, new toys and of course making cookies and birthday goodies for Jesus. Because we had so many illnesses over the past couple of months we did not get to chelate as often as we had hoped.

We are only chelating with one supplement called ALA because the other we want to use lowers her ability to fight off illness. Hopefully we can add that DMSA in soon. As far as improvements go we have really seen some gains! Baylor used to yell at me a whole lot and that has really calmed down some as she has progressed in the independent phase of her little life. I used to have to carry her everywhere we went and now she will walk in and out of places with me holding my hand and climbing out of the car all by herself. This has been a really nice change. Baylor requests a lot of her basic needs without prompting a good bit of the time. Sometimes she struggles getting the words out until she hears you say them but she is at least attempting to communicate. With this, she is also paying more attention to what it is we are trying to say to her.

This really helps with her teachers and her ABA therapists. They have been noticing she sits well for tasks at school and at home even if she does not like them. Which is big, because she likes things her way and will protest if you are not obliging her. Teachers and therapists also report she is transitioning between preferred activities and non preferred activities so much better than she used to. That is a good change for both caregivers and girlfriend.  Bay repeats words and new phrases almost every day. It is a beautiful thing to listen to her words and watch her engage.

Baylor is engaging us and her world a little more each week and we could not be happier. She is responding to hellos in stores and accepting major change in routine, generally speaking. She just got in her new big girl bed and has had absolutely no issues that we were not dealing with before. Bay does not calm herself down well. She never has. So at 2:00 a.m. when she wakes herself up thanks to sleep patterns, she does not go back to sleep until about 5:00 a.m. So if you see us, you may notice we are a bit sleep deprived. If she is improving, we will deal with anything :)

She is happier, plays better, pays more attention, interacts more with people and is working on words. We have a ways to go but for all He has done,  to God be all the glory!

On a totally separate note, we have not made our personal lives readily open for the public. However, we just went through a very personal, very difficult weekend.We were expecting another baby and we lost him at the same stage we did with Ezri. Eerily at 17 1/2 weeks. The best group of high risk doctors in middle Tennessee are baffled by our history. I was told that I am "not textbook" and many appointments are in the future to try to put together what has been going on. God is a God of only goodness and righteousness and we know that all things work to the good for those who love God (Romans 8:28). We look forward to finding the beautiful and the good in what we have been experiencing. Our son was perfectly formed, beautiful hands and feet, and we named him Parker Blumberg King. January 19, 2013. We know our family will be united one day but while the rest of our family is here we will keep fighting through the rough and persevere until the end with the guidance of our Savior. 

We appreciate your prayers and your support. Thank you for the love you show our family.

Many blessings,
Team Baylor

Turning 3

It has been way too long, but we have been busy and God has been working on Baylor! We are not where we want to be but we are making gains and everything forward is forward.

This fall Ainsley started Kindergarten and Baylor switched pre-schools. Baylor has been on a 3 day half day school schedule with speech and occupational therapy 2 times a week for each, and added ABA therapy 3 days a week for two hours each day.  Needless to say I do not have much going on outside of my children! Baylor has definitely made progress because of all her early intervention.One thing I do not mention much is your instinct. If you think something is wrong, get it checked. Everything caught early has a greater chance of healing.

New progress in her speech and social skills! I am happy to report that Baylor is trying harder to talk with us and today alone she had spontaneously spoken 5 times in 5 different circumstances. Poor thing, words have just been very hard for her to get out. Her ABA therapist tells us that she is cognitively over 3 she just shows more immaturity because of her lack of language. I was so excited to hear that! I know she is almost 3 but she seems 2 a good portion of the time because of her lack of communication. She brought me her snack and said, "I need help." She asked me in the car on the way to school, "What do you want to do?" when she normally asks that when she wants to watch a movie. She asked for "Help" when climbing out of the trampoline. Bay brought me her drink and said "Drink. More." When Stephen went to grill she said, "I want to go outside." She has been improving dealing with the rest of us people, too.

Baylor talked back with a friend of mine's son in their own language, she saw the chaos in the trampoline with mine and my neighbor's kids and joined in. She asked a little boy today "More" to blow bubbles for her and then she told him "Bye bye." She seeks Ainsley out by taking her things to get her to chase her. I just love watching her interact with the world! A year ago she had lost all her language, would not look at us when we called her name much less acknowledge anything going on around her.

Some people say, "So do you think it's really autism? She seems fine to me. Do you think she grew out of it?" I really do not believe you can just grow out of autism. You can heal out of it, but not grow out of it. If there was a child diagnosed on the ASD spectrum and was given no interventions but grew out of it, then they probably were never on the spectrum to begin with. I truly believe that the biomedical interventions that were brought before us have been healing our daughter. None of which could have been made possible without our Healer. He ultimately could have been touching her at the same time as what we were doing or just blessed our efforts. He gets all our glory, forever.

What we are doing right now. Well, we just finished Round 1 of chelating this past weekend. It is the process of mixing lemonade and DMSA every 3 hours round the clock starting Friday at 8:30 a.m. until 11:30 p.m. Sunday. You cannot miss a dose by more than a few minutes or you have to end your round. No pressure. Especially at 3:15 a.m.! This weekend looks the same and then the following weekend gets the chelator ALA. She needs a minimum of 100 rounds and could go up to 300. This will happen for at least 2 years. We are happy she takes her supplements well! This is hotly debated therapy that has tremendously helped kids on the spectrum. We are crazy excited about it. We totally expect to hit some bumps, but once we have it smoothed out it should  be really good for her. God's peace has been on us for this therapy in particular. Please continue to pray for her in this area specifically. We need more prayer, too for ways to take care of her other therapies.

When Baylor turns 3 she ages out of Early Intervention. She then goes to the school that Ainsley goes to in their Early Childhood program. Where we are is the best in Middle Tennessee. We are zoned perfectly for the best equipped school for Baylor. It absolutely brings me to tears to think on how God has magnificently guided our home buying before we had kids to put us in our school zone, our specialty doctor before we realized Baylor was sick (he quit accepting new patients a few months after we started with him), and the time of life that makes gluten-free, dairy-free living so much easier, and the list goes on. The downside of turning 3.

In 32 states there is autism coverage. Our state is not one of them. Stephen's employer does not selectively cover autism because they do not have to by law. Most here do not because it is not required. This means no speech, no occupational, and no ABA therapy. No coverage. Seriously. As if the supplements that are hundreds of dollars every month and the diet not 4 times that of the typical household were not enough extra. ABA alone is over $1, 100.00 a month. Speech and OT would be $1,600.00 a month. Do any of you have a spare $2, 700.00 a month? No? Us either. We were beautifully blessed with a grant for ABA only that will cover a little of the next year but not as much as she needs. We are unbelievably grateful for the grant but need your prayer for coverage for Baylor. God will provide and we do believe she is and will be a living miracle and example of God's grace and power.

I suppose if I blogged more this would not be so long. We appreciate all of your support, your prayers, keeping in touch to check on us, your financial support and all your love for our family. We love you all and appreciate everything.

And of course, a special shout of thanks to all our friends and family who came to support or donated to Autism Speaks in honor of Baylor in the Walk Now for Autism Speaks 2012! Your show of support meant more than you will ever know.

Much love and so many blessings!
Team Baylor

The Right Direction

Baylor has been doing well lately! She's moving at her own pace right now but it is still forward so we are grateful. Sometimes I just want to hurry up and see the future and that can cause me to almost overlook some of her really good moments if I am not careful. A couple of great examples is Baylor is repeating a lot! It is awesome. Just today she repeated gorilla as "illa" and zebra as "eba" and she signed "more" and said "more bubbles." Also, she wants to see what Ainsley is playing with (much to her dismay) and gets upset if I do not let her in her room when Ainsley is in hiding with her toys! We are so excited about all of this! Stephen and I are VERY watchful for anything that looks good and new so we do not feel like we are missing anything progressive. Since I last updated we have taken Baylor to a Vanderbilt doctor that specializes in special needs kids and we have had our first ABA appointment in-home last week. I am pretty sure these specialists do not harp on the negative and they expressed some things that gave us a lot of encouragement.

The appointment with the Vanderbilt doctor was really just a starting point for us to have our neurology appointment to rule out seizures (which none of these appointments that are in the future are set yet), a GI specialist to see if there is anything we can find out in regards to her food sensitivities and her digestive issues and a sleep specialist. We weighed and measured Bay and she is 31% in height and 50% in weight. Nicely on the charts. At least I do not have to worry over one child in this category! Our "new/other"doctor did not think Baylor is having seizures but she is willing to let us rule it out. As for the sleep doctor, we are not sure if there is some magic sleep potion but if we find out there is we will let you in on it. A beautiful thing she said was that our kids had immaculate behavior (God blessed us in this tiny room and they handled it beautifully) and she loved how Baylor had such inflection in her tone of voice and she sees a lot of potential for her speech. It was really nice to hear her say she had good feelings for the future. Sometimes it is really hard not to see that future. We have faith, we trust God but our flesh really wants to see it happen already! Just to let you know about  my quotations on the doctor we just saw, we decided it would be good to cover all our bases and have a typical doctor look at Baylor just so we do not miss anything. Baylor's amazing doctor will not be replaced at all, we really just wanted the foot in the door on what all Vandy has to offer. Stephen and I only believe in Rx when really necessary as does Bay's doctor. Typical doctors will basically throw the stuff at you. We are much more conservative in this department than regular doctors. Having one foot in at Vanderbilt will give us access to other options for Baylor's benefit.

One of these neat Vanderbilt treats is a series they do every month with rotating topics on things that are difficult in raising a child on the spectrum. They hold a 3 hour seminar with handouts and PowerPoint, all the while watching our kids downstairs in a building on Vandy's campus. Last weekend we went to a seminar on Rapid Method Toilet Training. So we have visuals for Baylor, awesome notes, and a psychologist's email that loves to help potty train kids. Sweet. I will pocket that for when I am ready to tackle this. In a few weeks we will work on behaviors for the grocery store and restaurants. This stuff is great.  If you have never potty trained anyone, just so you know, it sucks. Ainsley was great and it was still a no fun experience for me. Baylor is a stubborn little girl and I just do not know when we will both agree on when this should happen! Luckily, I had the conversation with Baylor's ABA, Carrie, and she thinks once we get some of her behaviors better controlled, it will be much easier on everyone involved. Whew. I am so not ready for that yet! Stephen was all, "Yeah, I think she could do it now." Sure, she knows what is going on but behavior wise.....no thanks. Not yet!

Speaking of Carrie, she is our BCBA certified therapist. What a God-send. She is top-notch qualified for behavior training and she works with the program Bay is in through the state until she is 3. Most therapists will not bother with the program because they do not pay like private pay. Carrie has more heart than 98% of the therapists that specialize in behavior in Middle-TN. Almost no one will work with us because the system does not pay well. What an amazing person to do her job in the first place. Anyway, she came last week and after an hour or so told me some more good news. Of all 20 kids she sees (her and other therapists under her) Baylor is the ONLY one who does imaginary play. What she said was ASD kids are so black and white, very concrete, and they do not play pretend because they see no point to it. They only ever mimic the play and none from their imagination. Baylor is creative with her imagination in how she plays with her dolls and her little Veggie Tales figurines. Not to mention her hands, as she will sit on the other side of the table and climb up and walk her hands over to my plate slowly and then they take my food. So, Baylor will be working on doing what we want and not always what she wants. 

Mommy over here has been a real push-over with her for a few reasons. I do not want to stifle her learning (as I believe she sees the world and experiences it differently than most) and since she likes to ignore what I say some, I do not know if she listened to what I said! When a child does not really communicate, it is hard to know all the time what to do. I can not put her in time-out and I refuse to spank her for everything that is not spank-worthy. Here comes ABA to the rescue. They are going to get me in better parenting shape for Bay! Man, I bet this is going to suck a little for a lot of happy in the long run. Praise God! We are incredibly blessed!!!!

I will update sooner than later as we are preparing to walk with Autism Speaks to not only raise awareness, but money to help in research. I can promise you, you will know more than just Baylor who is on the spectrum and this goes to help everyone understand more to help Our Kids. 

Please visit our site and if you only have a few dollars to donate, we would love your support. www.walknowforautismspeaks.org/tennessee/baylorsfamily. 

Also, if you would like to join the team to walk with us in Nashville on September 8, sign up on our page and  we will make whatever arrangements you need!

Thank you for your love, prayers and support.

Blessings,

Team Baylor

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