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