Eye Doctor

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

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

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

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

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

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

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

Methyl B-12

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

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

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

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

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

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


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



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

Hyperbaric Oxygen Therapy (HBOT)

Today was the last day of what could be the only or could be the first round of oxygen therapy! What an amazing gift this therapy has been. Basically, we started the first week in December going to Baylor’s doctor’s office and “diving” in this hard chamber that pressurizes you under the equivalent of 9 feet of water. Then, they hook you up with pure 100% oxygen from the outside of the tank with hoses, and you attach those on the inside that connect to your plastic hood. Yes, a plastic sealed hood over your child’s head while you are locked in a chamber you can’t stand up in and tubes you have to make sure aren’t coming undone while your little bouncer attempts to jump around. You are in there for about an hour and a half each time. Our doctor is the only one in middle Tennessee with a chamber. The next closest one is Memphis. God orchestrated this whole thing for us, I have no doubt. 

Protocol is 40 dives, done as close together as humanly possible. We started the first week in December and only took breaks at Christmas for a day, and a few days during two separate weeks for ear issues. What a trooper Baylor was! We must mention Ainsley, who was amazing going to so many of these when she couldn’t be with Daddy at the office. Ainsley was so sweet and stayed outside the chamber and played with what she brought from home at the desk where I could not see her the entire time we were diving. Not every 5 year old would do this well, I promise. What a great daughter and big sister. She truly is an amazing person. I knew it before, but now she's just showing off. 

The perks of diving are greatest for autism, lyme disease, stroke, and brain trauma. However, they have found it helpful for detox, fibromyalgia, and many more issues. You can Google HBOT if you are so inclined. During this time, she started coming out of the fog most people associate with autism: lack of social interaction, dependency, touch aversions, loose bowels, not answering when you speak, etc.

Baylor’s vocabulary is growing every day, she leaps out of my arms and into her teachers, therapists and her daddy, she imitates your sounds and words, she uses words when they are appropriate, and overall just growing! It makes us so happy to see her work on communicating (which by far is her hardest area), not only with us but with people in general.

Her therapists have told me she is improving EVERY time we bring her. She goes twice a week to speech and occupational therapy. Occupational therapy really helps kids learn how to play and problem solve, as well as giving them all kinds of different sensory input. Speech is communication, both receptive and expressive. She gains each week in this. God is incredible!

So now we scale back our schedule where we don’t have to go every day for oxygen therapy, but man, has it been worth it! Now we watch the new supplements and possibly heavy metal detox and see if she would even need more dives. She may not. The next phase will show a lot. If she becomes stagnant in her progression, we may revisit a series of dives. We express huge thanks to those who have had a very personal hand in her oxygen therapy and those of you who pray for Baylor. You are an invaluable part of this journey!

To God be the glory!