So, I have a feeling I'll be writing a few things every so often, as they pop into my head, but trying to summarize the fire hose of information we have received is good for my retention. And maybe just a tidbit will help someone else.
Yesterday we all got to crawl and creep. Just to clarify, I've had creeping and crawling backwards, as many do. Now when I use the term crawling, I am referring to looking like a salamander, belly on the floor, legs and arms out. We all got on the floor and crawled. It was quite a sight. How well we crawl is related to our neurological organization or disorganization. Because Shawn has crawled through attics for work a lot, he did quite well. It is amazing how much I had to think about it, but I still did decent. Some people had LOTS of trouble. Before you start laughing, get down and try it yourselves. Not as easy as you think. The point for having us do it is so we know what our child will be experiencing, and realize the level of effort and breathing that is involved. This is a good thing. A very important aspect of crawling is the Babinski reflex. The digging into the ground and pushing off sends messages to the pons and is very important for neurological organization. Shawn and I raced and he wanted to make sure I pointed out that he did beat me.
Now, before you all think Shawn is so much more neurologically organized than me, let me clarify that throughout the week, we kept a list of "injuries"/abnormalities we each have, and he had more issues than me! We also kept a list of other people and the brain level association for the issues. Just ask if you want to know whether or not you made the list. Our dog, Kitt, did! Don't be surprised if Shawn or I ask you to get done and crawl either.
At any rate TUMMY TIME and CRAWLING (with the Babinski reflex) is of utmost importance. Unfortunately kids do not have near the oportunities for doing that now. Shawn is going to build an inclined plane for Maggie to practice practice practice all day long. We will be working up to about 300 yards/day. Crazy?! I know. The benefits of crawling are endless...digestion, coordination, neurological organization!
Another great program for Maggie is hydrotherapy. This can help with movement and coordination as well, and it is a very similar environment to where she came from. We have started to get the ball rolling with getting her swimming more often.
Oxygen was a big thing. I have struggled for a while with trying to figure out how oxygen is tied into everything, but I have known that it is definitely involved. We need to work to get her taking deeper breaths. It deals with improving the dilation of the arteries. Though we need to wait on some of the items until we go up for our 2 day appointment to get her assessed individually, it was clear that this is a BIG component to start improving. Crawling and moving would help with this as well. There are some other crazy exercises we learned that we will be excited to see the results from. The oxygen issue makes complete sense with her spasms as well, as they typically occur when she is awakening and her breathing pattern changes. Deeper, more full breathing is extremely beneficial for so many things and clarity of thinking. Another interesting thing is that the brain operates best at 67*. Looks like Maggie and are going to have to dress a little warmer and turn the air on. Not happy about this one.
The nutrition component is also very important. This part was reassuring to me that we are mostly on the right track. It was confirmed that avoiding gluten and casien is very beneficial, as they can both be difficult to digest. A couple of new rules for meals should be good and easy tweaks to what we are already doing. Fruits should not be mixed with animal protein. They should mostly be served as snacks, and high sugar fruits should be avoided. Also, we can reduce her carbs and not serve them with animal protein either. Trying to up proteins and good fats are great for neurogenesis (brain growth). Adding good quality Himalayan sea salt is also very good for the brain. And veggies, veggies, veggies! I'm sure when we go to our appt, we will be able to get more individualized meal planning, but this will be close to a modified Ketogenic diet.
I'm not sure if I mentioned or not, but last week I had spoken with a dietician at Vanderbilt and the Keto diet is what our neurologist thought might be the next best step. Shawn has had reservations about the full Keto diet, as we would be admitted for 3-4 days, and we would have to quit nursing. After researching it, I can see the benefits of the Keto diet and have tried to implement a bit of it. I think the changes are helping, and hopefully, we can make these tweaks and avoid taking the other extreme step. I've known I've been missing the mark with which foods together, but haven't known which changes to make. These few "rules" will be very helpful. Along the lines of nutrition, there is a HUGE gut-neurological connection, with at least half of our neurotransmitters found in the intestinal track. That is why if you are around us at all, you know that bowels is a normal conversation in our house and a good tool to assess our health. As much as we indulge in food and consider it such a social event, it's kind of ironic that it is taboo to assess how it affects us!
The Family Hope Center is also very big on CranioSacral Myofascial Release. I'm glad we are already ahead of the game with getting aspects of this addressed with our current therapy.
The idea of clean air, purified water, organized environment (ah!), and positive people surrounding Maggie were pointed out as very important. Neurologically disorganized children need more structure. It's no question that our surroundings help define us. I've been chewing on these things for a while and have set the start of the school year as a goal to get us as structured as we can. It might mean Shawn and I pull back on some things to maintain the structure. (Now this will be difficult for both of us and our spontaneity). I'm sure we will still be traveling here and there, but we may have more disciplined structure to it.
I know...I know...many people think we are CRAZY and all of this seems kind of extreme. But, extreme kids need extreme measures. The brain needs intensity, duration, and frequency to grow. Follow me a moment on this one, a hypERsensitive child requires LOW intensity, LOW duration, and HIGH frequency. Whereas a hypOsensitive child needs HIGH intensity, HIGH duration, and LOW frequency. At either rate, it will take a lot of time and exposure to get her brain responding appropriately. Other interesting tidbits is that sensory improves sensory, motor improves motor. Though sensory precedes motor, often times we think stimulating hearing (sensory) will help speech (motor). In their opinion crawling (motor) promotes speech. Yeah, try to wrap your mind around that one!
Yesterday we also worked more to identify what specific parts of the program Maggie will need to be stimulated by. We learned some tips and suggestions on how to get ourselves organized and get started with it all. They did tell us to start slow, one thing at a time. Remember back last summer/fall when I realized we were in a marathon, not a sprint. Yep, that was definitely reiterated. The thing is, when I run, I like to pick up the pace a bit, just to get it over with. It's not the running itself I like, it's the feeling of accomplishment when I am done. It's the goal, the task, the end product. That is the case with this. I think we can have a lot of fun together on our journey, but I have got to keep the goal in mind, a hurt child getting well...MY hurt child that WILL get well.
Overall, it was a great week. Maggie did AWESOME with Abbie and Jaymi, and the girls did AWESOME with Maggie. We couldn't have asked for it to be better. I was tired bouncing back and forth between the conference and Maggie (for nursing, meds, etc.), but it could have become very chaotic, and it didn't at all. They would bring her to the lobby for me to nurse at our breaks, and Maggie would be serious and efficient with nursing. There weren't any crazy meltdowns at all. I'm bummed I didn't take any pictures of Maggie with the girls, but I think they took some we'll have to get from them.
We also made some FABULOUS new friends! Not many of the kiddos were with their parents, but a handful of families are in very similar positions that we are. Unfortunately these families are all over, Pennsylavania, North Carolina, Delaware, Washington, Germany. There are two families in particular we have fallen in love with that are far away. Bruno's family is near Guadalajara, Mexico, and Izzy's family is in Arizona. We were lucky enough to sit down and have dinner together last night and just laugh together. Bruno and Izzy are in the same severe to profound range as Maggie and have very similar situations to ours.
One very interesting thing I observed that I didn't realize until the early hours of this morning. The statistics for families with special needs kiddos and the divorce rate is outrageously high. As we watched couples throughout the conference, you could see them almost lean into each other a little more. They shared with us that one draft horse can pull 2 ton, but 2 draft horses can pull not only 4 ton, but 23 TON! That's a pretty good return. How cool of a program to get everyone on the same page and promoting couples growing together through this! Love this aspect of the program!
Shawn is super hopeful and excited about what's to come. Me?...a little overwhlemed at all that will have to take place. Hopefully he realizes certain responsibilities will have to shift and we can work together together to implement a a plan to get our sweet baby doll on the right track!