Day 3 and Home...

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!

Final thoughts...

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!

Day 2...

Yesterday and this morning were big ideas and reinforced many things I already had researched.  When we got it more details about creating our program, I began to get overwhelmed.

Some of the things we need to do are:

Go into the dark closet, flash a bright flashlight at her eyes for 1 second, wait 5 seconds, then flash again.  Do this for 1 minute every 15 minutes throughout the day (totaling about 40 times/day).  This is to help stimulate pupil response and get her vision center to process sights better.

We also need to make loud startle sounds 3 times/day.

To awaken her tactile sense, we need to rub her down with 2 contrasting textures (rough/soft) 20 times/day.

We need to stimulate the pain sensation by quickly touching her with cold pack or hot spoon 10-20 times per day.

We can activate the olfactory sense by introducing 3 different scents 3 times in the morning, then 3 different ones in the afternoon.

Those are just the sensory stuff.  Tomorrow we will get into more motor stuff.

We learned more, but I'll have to share that later.  I'm too exhausted tonight.

Day One...

The first comment Shawn had at our first break was, "well...it looks like there might actually be some hope".

Major points for the day...

The seizures are not the problem, they are a symptom to alert us there is something neurological that needs to be addressed

I CanNOT fix my child.  I can provide neuro-developmental opportunities!

We KNOW Maggie.  As her parents, we are qualified to help her...more so than the professionals, but professionals can come alongside us.  We should be the ones in the driver seat, no one else!

We need to become Engineers

Chemical engineers-to assess her nutrition and how it affects the brain

Electrical engineers-help with her wiring

Civil engineers-deal with being able to track her and know where we are going

Mechanical engineers-figure out how to get her moving

(Good thing both my mom and dad are engineers!  That's my kind of problem solving)

There is no limit on her neurological wellness.

We should evaluate the abilities, not the disabilities.

We assessed her with a comprehensive integrative and developmental progression chart.  We identified her injury to be severe extensive brain stem/Limbic/cortex.  Her neurological age is 2.8 months, which shows she is operating at 21.5% for neurological functioning.  None of this surprises us, as we've known all the thing.  It was actually nice to have a tangible assessment that helped us identify where she is and where she needs to be going.  Plenty of room for improvement.  This also reassures me that the wait and see method is absolutely ridiculous.  If she is already neurologically behind and her chronological age keeps increasing, the spread is going to become greater and greater.

And one thing that was driven home multiple times...TUMMY TIME!  Kids don't spend nearly enough time on the floor on their bellies.  There are so many benefits to kids spending time on their bellies.  I'm hoping we will go into detail more, but it was mentioned many times today.  I have "more time on tummy" written at least 3 or 4 times in my notes!

More to come tomorrow!

P.S.  Maggie loved snuggling with the girls and did great today!

PA and The Family Hope Center

There is no doubt in my mind that God directed us to this place as the next step for Maggie's success.  However, I am fairly confident the enemy (Satan) has been trying to derail it.  He has done a decent job at taking up residency in my heart as we've worked through some issues.

Up until early last week, we weren't even sure if Shawn was going to be able to come and if he could come then he may have had to fly home early for a show.  At any rate, Momma was not thrilled, and the saying "if Momma ain't happy, ain't nobody happy" was in full force.  Thankfully that was resolved and he's with us for the whole trip.  Then we weren't sure about which vehicle to take, as the car I've been driving needs some attention.  Then the screaming/crying/teething ordeal made me dread going on a long car ride and leaving her during the days.  It just seemed one thing after another.  And yesterday morning, I woke up hateful (wait...let me correct that...I woke up in a great mood, but when it took forever to get us all out of the house I was NOT a pleasant person).  Ironically enough, Sunday's sermon was about anger.  Obviously I missed half of it tending to a crying baby.  Might have to get that one on CD.

Anyway, with all the little things, the thought had crossed my mind a few times over the past couple of weeks, "is satan trying to stop us from going?".  At lunch, while I was still very short with my husband, I went to pay for my salad and it was $6.66.  It was a clear reminder to me that Satan loves my pissy attitude and would love nothing more to see Shawn and I at odds with one another.  Finally, I made the conscious effort to pull it together and get a grip on my bad attitude.  Not always an easy task.

So, we made it here.  There was a mess up with room when we got here but we got it straightened out.  This is my 3rd or 4th time trying to get this post typed, as it keeps getting deleted It's all the little things.  Seriously Satan...just makes me want to cling to The Lord more and stand firmer in my convictions.

I think we are here and good to go though.  Our gracious friends, (2 of the girls) that we stay with on our way to CT came over to watch Maggie in the hotel room while we are at the conference.  So lucky to have them close!

And now for the conference preview... Basically Shawn and my brains will be bombarded with so much information about the brain that we will be lucky if they don't explode.  As the girls and I were scoping the hotel out, we caught a glimpse of the registration area.  Shawn and I each have a binder with our names on them and they were at least 1 1/2-2 inches thick, full of paper.  Wow wee!  That's a lot of info!

They require every parent to attend this conference prior to starting their program.  By the end of the week, we should be able to identify what part of Maggie's brain is "injured" and at what age she is operating, physically, developmentally, cognitively, etc.  Then we will also learn what the brain needs to grow and develop optimally.  I am hoping we will walk away with some good tools that we will be able to implement right away to try to awaken her brain.  We will also schedule her a 2 day appointment within the next couple of months.  That is when the professionals will assess her fully and roll out a Maggie tailored plan!

I've been told I will go to bed dreaming about the brain.    We have a handful of other "special" moms awaiting my feedback.  I'm sure we'll have plenty of info to share over the next couple of days.

Say a prayer for Abbie, Jaymi, and Mags, that they would have a wonderful time together!  And that Shawn and I would be attentive and have an ease of understanding, connection, and come up with practical ways for application!

Silly mommy and Daddy

Overall this past week has gone quite well.  It's amazing how much it helps just to bring the struggles we are having into the light and ask others to come alongside us in prayer.  Ironically enough (or a God thing), last week's sermon was about Galatians 6:2...."Bear one another's burdens, and so fulfill the law of Christ". It was about letting go of hurts and pains.  I took a couple of big ideas from it. 1) bearing each other's burdens is a command, not an option, and 2) self-sufficiency is a myth. It is actually pride, a sin.  This hit a little close to home as Shawn and I clearly know we can't do this on our own, a common thought is that we don't want to burden anyone else with asking for help for this or that.  The pride thing has provided me with a great opportunity to grow this past year!!

At any rate, this week seemed less scheduled.  We still had our typical PT, OT, and ST appointments, bur we got to go to a play date in the park with friends from church and hang out by the pool with some friends (and even stick our feet in...next time Mommy will be sure to bring swimsuits and the neck float!).  We also were able to eat quite a few meals out on the deck and overall just chill a bit.

And then Saturday afternoon hit...And the screaming began!!  Seemingly out of no where, Maggie just began crying, and screaming, and crying.  Suspecting gas, we tried moving her to every position possible.  We placed our hands on areas we thought might be troublesome, implementing what we know from therapy.  Every so often she would calm down for a bit.  At one point we suspected a restriction or something in her neck.  Maybe kidneys, or even stones from higher fat and protein diet this week.  We put her in the tub...that helped for a little bit, but then she would spasm and get mad again.  Finally, after 3 hours and tag teaming back and forth, we were at our wit's end.  I decided to just lay her on the futon near us because I couldn't think of anything else to do to help her.  Low and behold, she may have been telling us the whole time to just get our hands off of her.  She managed to quiet herself down and took a little doze. When she awoke a couple of hours later the fussin began again and we both thought..oh no!  As Shawn handed her to me, I caught a whiff of something.  Sure enough, there was a big ol hard turd in her diaper.  We don't have a clue when she deposited it.  Now, a couple of things about that.  Up until just before I laid her down, she had been in the tub or with her diaper open, as we were watching for action down there.  And secondly, when it is that big and firm, there is always a squeaking and squealing plus stiff legs that accompany it.  But, that was not all.  Shortly after getting her diaper changed, I come to find out she had 2 molars coming in.  Poor thing.  If only Mommy and Daddy could have figured it out sooner, we could have helped to alleviate some o the pain.  We were both relieved to know there was a known reason to her fussin and that there was not an increase in seizures after all that crying.  Unfortunately even the things we experience that are typical for other kids have an added dynamic of stress.  One of the meds she is on is known to cause irritability and rage, so the initial pain is one thing, but then it gets magnified.  Oh well!  Luckily on Sunday my fingers were already exploring her mouth, so I was much quicker at finding the 2 molars on the other side.  That's FOUR molars at once...WOWZERS girlie!

Updates

Trip to Iowa...

Great Grandma Myrt was excited to love on little lady

Maggie was a trooper of a traveler and survived the whirlwind of a weekend quite well.  At first, we were slightly concerned.  We had therapy in Knoxville and then hit the road.  We had only made it maybe an hour/hour and a half when she started fussing.  Ok, fussing might be a bit of an understatement...crying and screaming uncontrollably.  We had to stop a couple of times, get her out of the carseat, try to snuggle her, nurse her, anything.  One particular stop of about an hour of trying to console her, we didn't know if we would ever be able to put her back in the carseat and get back on the road, let alone make it all the way to Iowa.  As we finally did get on the road again, we noticed something...we began a descent from the Cumberland Plateau.  On top of that, we were in the middle of a storm.  Remember the whole cranial pressure issue from quite a few months back?  Yep, we think that's of concern again.  And what did we do?!?!  Keep her right in the middle of that chaos.  If we would have kept moving, it probably would have gotten better much quicker.  So, we are again reminded of the no flying issue.  As I so empathetically put it this week, the convenience of flying is not worth her head exploding.

Shawn's back mediation...

I guess we would say it went ok.  This ongoing back injury is from 2 1/2 years ago while working at University of Iowa.  With his records claiming he fell SIXTY feet off the ladder, we should have gotten a much bigger settlement.  It is over now, but given the lifelong issue of dealing with back pain, the settlement doesn't seem like much.

Great Grandma Carol too!

How was the benefit ride, you ask?
Well, I have 2 answers for that...absolutely crappy and absolutely wonderful!  The ride itself became nonexistent.  Grandpa, Grandma, and Aunt Audie thought they would brave the freezing cold rain.  They made it a mile 🚲.  Luckily, I bailed at the very last minute.  The combination of feeling how cold it was just running out to the bus and Shawn pointing out I would be of no help to Maggie if I got sick, was enough to persuade me out of getting on my bike.  And that meant I didn't get soaking wet!  It happened to be cold and rainy ALL weekend.  Us southerners were freezing!

The benefit itself was wonderful.  It was such a blessing to see so many friends and family come out and support Mags and Uncle Steve.  With money still coming in, it's looking like the event brought in a total of about $6,000. It's the $100 pickles this time!  (Thanks Dixie for donating such a yummy auction item!). Thank you to everyone that came out and donated!!  Big thanks to Dad and Carla for organizing it, Cousin Tara at Zsaavooz for the venue and food, and Grandma Sue, Grandpa Hank, Uncle Gary, Aunt Nancy, Erin, and Jesse for all the help setting up!!

Graduations

The initial reason we went to Iowa was for Aunt Nikki's high school graduation.  We were beginning to second guess our decision to go to that.  First of all, we were sitting on bleachers with no back support that we were afraid we were going to lose a kid down.  Luckily all were safe.  It was Grandma and Grandpa we should have been concerned about.  Grandpa dropped the flowers and Grandma dropped something else.  Anyone that's been to any graduation ceremony other than their own knows how long they can be.  Just before they started calling names, a tornado siren went off.  Are you kidding me?! A gym packed with people...that's just asking for pandemonium.  Luckily, an officer clarified that it was NOT a tornado.  Not so sure that I was any less concerned at that point.  So, ceremony carries on, until...all the lights in the gym go out.  There we sat in the dark.  Of course we had to wait for them to cool down and re-strike.  Needless to say, Aunt Nicole's graduation was surely memorable.  Hard to believe she is an independent adult now.

We were lucky enough that our trip also made it possible for us to attend another special graduates open house.  (Side note here: since moving to the south, I have come to realize that what I know of a traditional open house that everyone has, is a regional thing, more of a rarity down her.  Weird!). Anyway, this other special graduate is a young lady that I first met when I taught her Sunday School in 1st grade.  I went on to babysit her and her siblings, and even moved in and nanny-ed for them for a short period of time.  It is exciting to watch and see what God has in store for Nicole and Miranda as they both submit their lives to Him and begin a new season of life!
I did not quite expect the flood of emotions that came when we arrived at the Rowenhorst's.  You would think they were tears of joy for Miranda graduating, but no, I found them to be much more selfish.  We saw so many loving faces of friends that have cared for me and us for many years and the best I could describe it was like sliding into home base, a safe place.  Leading up to our visit, the days and nights have been long, as Maggie has been more unstable and fussy a lot, just not comfortable.  The spasms have continued and we all felt quite rocky.

It didn't help that the first person we saw while walking up to the house was a sweet sweet friend of mine that I've known for the past 10 years.  Karen KNOWS the tragedy of a child that is not well, as she lost not one, but 2 sons each shortly after they were born.  Of course, a big hug, and then tears.  Then we go inside and more people we love, and more importantly, that love on us, and more tears.  The pain of our situation was so apparent.  At the end of the night, I had to apologize for the mess that I was.  It sucks being so consumed by our situation that it is difficult to not let it overtake every social interaction.  It took me much more off-guard than I had expected.  Next time I'll try to get it out of my system by visiting them prior to a big social event.  Oh well, thank goodness they love and care for us so much!  And it was truly a blessing to see all these dear friends, mostly from my days at First Baptist!

A couple of other quick things...

While we were gone, a couple of prominent aging members of our church passed away.  The first one we did not know at all, but when the family asked the church secretary if there was anything in particular the church was raising funds for she told them about Maggie.  Not even knowing them, the family made a significant donation to our sweet little girl.    Wow!!

The other gentleman that passed away was a sweet fella that Maggie and I would take meals to this spring.  It was a blessing getting to know Fred and his daughter over the past few months.  I was particularly disappointed that we didn't make it a priority to visit him once he had moved to the nursing home.  Maggie and I were also quite bummed that we were able to attend the funeral due to scheduled therapy.  I learned if the Spirit prompts you to do something, act on it, or else you might not get another chance.

Now for the current situation...

Maggie's face says how we all felt

Quite a few weeks back, we began and since completed weaning her completely off the Clonazepam.  We also doubled her Zonisamide dosage, in hope that as for some others, that would be able to control the IS (infantile spasms).  No such luck!!😞  The spasms have actually gotten much worse, in frequency, duration, and intensity.  Her sleeping and eating pattern is all over the place, and she has become quite growly.  Most every time she wakes up she screams/cries until her spasms kick in, and then she spasms for a while.   Obviously, this all sucks!  We were patiently awaiting our doctor's appointment this week before we requested to change anything else up.  So, that leads into the doctor appointments.  Shawn was able to go with us, which I needed given the uncertainty of our current situation and meeting with a new doctor.  Overall, the appointments were quite uneventful...didn't amount to much at all.  Our neurologist did recommend trying her on a new drug that is similar to the Clonazepam, but doesn't have the same concerns about long term use.  The new neurogeneticist sent out a couple of labs, and GI noted her growth was a little lower than we'd like to see.  One thing the geneticist explained is that she is most likely having trouble transitioning from asleep to awake and just goes straight to an irritability.  That and learning that she has some spasticity in her ankle were the only 2 real tidbits for the day.  We sat around waiting for a urine sample for one of the tests, but finally after waiting plenty long enough, they told us we could bring a sample back next time.  Our first appointment was 7:50 that morning and we didn't end up getting home until 10:30pm.  Long day for all 3 of us.  We left frustrated.  I HATE the "I'll see you in 3-4 months."  Really?! You haven't done anything.  What's going to change between now and then?  Why aren't you interested in searching for answers...causes?  Seriously...a waste of our day for a whole lot of nothing!

Please pray for us.

I've noticed more checking out behaviors on my part, a sign of being in a more depressive state.  Being able to identify it helps tremendously, so we may be moving forward already

As Maggie cooed in her crib last night  (of course, wide awake in the middle of the night, because that's what she does now), Shawn and I lay sobbing, weeping over our life.  I HATE that I just watch my little girl spasm all day long, that it takes everything in me to try to get her to eat up good, that I've only really seen her smile twice in the past 4 1/2 months.  I HATE that she can't poop and every time we change medicine around it messes that all up again.  I just HATE where we are right now.  I can handle bumps in the road, but not a 1,000 mile detour.  I want my little girl back, the little girl that was beginning to make so much progress at the beginning of February, a little girl that doesn't seem so lost and disconnected, a little girl that is comfortable and not in pain, a little girl that doesn't spasm every time her brain tries to process a piece of information.

We are hopeful that the stuff we have planned this summer will help awaken and organize her brain a bit more, that by August we will hit the ground running with a therapy protocol and she'll start making strides again.  Even if they are Maggie Strides, (as my dear friend Amber describes them)!

That's all for now...plenty, right?