Tuesday, 22 April 2014

Mind Blowing Technology: ZYTO Scans

Last week John and I took the boys to an appointment with a new provider in Richmond.  It just about blew my mind.  I am, as always, extremely overwhelmed and in total information overload.  To the point where when some of my autism mama friends asked me about the appointment I basically said, shhh, not ready.  Luckily, they get that.  I should just get a sign to plaster across my forehead....PROCESSING

And I'm not done.  I am actually going to use this post to get through some of this.  The provider that we saw uses a technology called "zyto scan ".  Here is a description:

"Your body is energetically connected and constantly in communication with itself. The primary function of this communication is to maintain overall health and functionality. Biocommunication between your body and ZYTO software takes advantage of this and is a breakthrough method for 'listening to' and 'communicating with' your body.
By interacting energetically with your body the ZYTO software will essentially 'ask your body questions' and record your body's responses or 'answers'. Information gathered in this way can help you be more proactive about your health and help you and your healthcare provider make better decisions regarding your healthcare.

ZYTO scans do not diagnose or recommend treatments, they simply provide information that should be considered by a qualified healthcare professional in determining a course of action.

OK now this lady right here is a cynic!  I would not have undertaken all of this, except it just seemed meant to be. This practitioner, Michael Payne, was fairly well known in the autism world about two years ago.  I discovered when I did my research on him that he kind of disappeared all of the sudden (not a good sign right?).  But actually in this case it was- he moved on- to lyme disease (many kids with autism have this in case you didn't know- no really they do) and cancer.  He is still studying autoimmune processes, but from what he said to me, he was very discouraged with fighting big pharma, and frankly, autism moms.  Sigh.  I get it.  However, two weeks ago, when Jack had strep, our pediatrician mentioned him to me because she was having a business dinner with him to discuss zyto scan (which she is getting in her office) and several other topics.  It was kismet.  She had my boys on her mind because she had seen Jack for strep, and thus mentioned their cases at dinner- and he was interested.  So he agreed to see the kids.  And I trust our pediatrician implicitly.  Michael Payne has worked with other practitioners who are very well known in the autism community, such as Amy Yasko, and  is someone who clearly thinks "outside the box".  Well here's the thing- the box is just not working out too well for many kids with autism.  I continue to hold the strong belief that you can hurl every therapy on earth at someone in enormous quantities, and if it's not able to "get in" (ie, the brain can't process it), it's not going to do a hill of beans worth of good- however it will cost the same as effective therapy.

OK, so I went into this appointment with an open mind, but also with a certain degree of skepticism.  I mean, seriously, they were going to be able to tell what is going on with the boys by putting their hands in a cradle and having a computer send electrical impulses (tiny ones) through their bodies?  Hmmmmm....
However, there is this:
ZYTO TECHNOLOGIES, INC            510(k) NO: K111308246(TRADITIONAL)
ATTN: VAUGHN R COOK               PHONE NO : 801 224 7199   
LINDON UT 84042                   510(k) SUMMARY AVAILABLE FROM FDA

That's the FDA clearance for the device.

Still, I would believe it when I saw it.  I took Nate back first and had to hold his little hand on this cradle for 5 minutes.  Would you believe this upset him way more than a blood draw or ecg?  He does not like having to be still, especially if it's because you are making him.  About 2 minutes into the scan Michael looks at me and asks me if there is any history of chronic infection in the tonsils in either of our families, such as tonsils that had cavities in them where infections could hide, because Nathan shows signs of this.  Welp, that was kinda crazy- like that moment when a psychic can tell you something  that no one should know?  Because, my mother, me, my sister, and Jack have ALL had to have our tonsils removed due to chronic infections that could not be cleared by antibiotics.

Then when Jack sat down and put his hand in the cradle, he asked if he had dental problems.  Those of you who have been reading for awhile know that Jack had to have dental surgery at age 4 due to a significant enamel defect- it was essentially multiple fillings, and then caps put on his back teeth.  So I explained that he had these procedures.  He said, no, but there is some type of infection in there- maybe strep? (you know, the thing he was treated for 2 weeks ago?)  He said it was in the gum under the cap on this one particular tooth.  This was on Thursday.  On Saturday morning Jack woke up complaining of tooth pain- we took him to the dentist and guess what?  That tooth has an infection.  The dentist actually recommended we just go ahead and take it out- it already had a pulpectomy and cap, it's not decay, but if it's infected now it will be very difficult to clear and it's a baby tooth.  So that's our next fun appointment.

But seriously, how freaky is that?  I mean these are very random issues to be able to pinpoint, but zyto scan found them right away.  Also, I was told by Nate's NIH neurologist last week that he has a mild conduction defect (nothing serious) on ecg- this was also picked up on the zyto scan.  Now, as per the device description, one does not "diagnose" with this tool, but rather use it as kind of a compass pointing to where there may be issues.  Both boys showed responses consistent with chronic yeast and bacterial infections, as well as brain inflammation.  Particularly Nathan.  Midbrain inflammation (think speech).  And while I am not going to "say" it, I will say what Michael said.  This type of inflammation is consistent with a particular injury that can be caused by a particular substance injected into children at a very young age.  One cannot say that it is definitely what they are seeing, right?  But does it give us a direction to explore?  yes, it does.  And while it upset me to see this in black and white, it was not surprising, not in the least.  Because despite what people in general want to believe, this does happen.  Not to ALL children, but to children who are already vulnerable due to a genetic predisposition to these problems.  This regression that we saw was not a "coincidence", it was a reaction.  I was too observant with this child, hyperobservant really after Jack's diagnosis, to have a foggy memory and accidentally label it as an incident when it was really a slow regression.  It was sudden.  It was within a week of 18 month vaccines.  These are things that you cannot dispute- don't try anyway, I will kick you :-).

There are things that can be done.  Not mainstream things.  More biomedical, but really homeopathic things.  The idea is that the brain inflammation and genetic predisposition both contribute to his inability to clear toxins that wouldn't bother most of us since we don't have this issue.  The inflammation has, for lack of a better term, turned off his body's ability to remediate these "insults", and that's really the root cause of the chronic infections, etc.  The infections can be cleared over and over again, but because of this, they will always come back.  But the hope is that this ability to protect can be turned back on, with intervention.  If this happens- guess what?  Therapy can get in, it can be effective.

I will delve deeper into the planned interventions in future posts.  This is as far as I can make it tonight.
Consider my mind blown.

Sunday, 20 April 2014

The Growth Is There

Sometimes I think I am just not looking in the right places.  No, I know I am not.  After appointments like last weekend's at NIH, and this past Thursday's with the new specialist (not ready to go into this yet- that's another post, later this week), I can get caught up in terms like "deficits" and "delays", and forget that my boys' lives are not about these people and their definitions of what kids their age should be doing.  Their lives are about doing what they can do to the best of their abilities.  Today was a nice reminder of that.

When I first had Jack, none of my family lived nearby.  My parents were literally across the country.  I was so very blessed when they moved to Maryland several years ago, right after Nate's first birthday.  God was watching out for me, that's for sure.  We had Easter dinner at my parent's house for the fourth year in a row today.  WOW!  That's like, a tradition, lol.  And I was able to remember a little about each of those years.  What I can say after thinking about it is that things are changing.  In Jack's case, there is self-regulation happening, in Nate's case there is increased awareness, and a definite increased ability to express his wants and needs.

Jack kept himself from having several meltdowns today that two years ago, or even last year could have gotten really ugly.  He is SLOWLY learning to be a bit more polite- he has that raw honesty kid thing going in spades, and it's really hard to teach him that things need to be done "because it's the nice way to do things".  AKA, if you are hoping for candy in your Easter eggs from the hunt and there is sidewalk chalk, say thank you, not "where's the candy??".  Sigh.  Thank God it was my parents, haha.  Jack is a corker lately too.  He is going through a "bad word police" phase right now.  So he will walk around all day going "oh my gooooooo...."  "sh" or "d" and then quickly glance over at me to see if I am going to correct him (if he says God of course).  And if I do, he tells me all his friends say it, and his cousins said it was ok (OH MY GOD- my kid said his friends are saying it- social cue, whoot!  and his cousins most certainly did NOT say that, lol).  Or, if mom or dad say anything that could be even remotely skewed into sounding like a bad word, he calls us out on it.  It's kind of exhausting, If I am being honest.  Today's newest trial was pretty hilarious, and one we couldn't think of a way to correct.  He was sitting in the back seat and it sounded like he said "what the hell".  John and I look at each other and both say, hey!  I explained to him that Hell is not ok to say.  He said, "no mom h-i-l-l".  So he walks around most of the day exclaiming "what the hill!".  And what on God's green earth are we to say to this? I mean, it's grammatically incorrect, I guess, but that's about all I've got.

Nathan- he sat at the table with us for dinner and was on fire with wanting ham, constantly pointing, saying I want, etc.  John swears he ate half a pig.  Ha.  He looked for some eggs during the egg hunt, and seemed somewhat interested.  Later we were outside playing and he walked over to our car and said "ina, ina". (in).  Then he said "go", "I go".  He was asking to go home.  Well holy moly!  This was great for Mr. Natey.  And something we NEVER would have hoped for a year ago.  And you know what??  THAT is what I need to focus on.  Yes, I am still working on helping him function at a higher level, and no I am not accepting where we are as our final destination developmentally, but I still need to allow myself the time to stop and enjoy our progress.  Even if it's small, we have worked damn hard for any gains we see.

So on a day when we should all count our blessings, I am able to see mine a bit more clearly.  And here's my little Easter treat for you- here they are over the past several years- look how much they've grown!  My sweet boys


Tuesday, 15 April 2014

Our Latest NIH Visit- Exhausting, Traumatic- And Over

Ok I am finally ready to talk about it.  Our very long and intense NIH visit last Friday.  I knew going in that this would be the most intense appointment procedure-wise we have ever had.  Obviously our initial appointments after diagnosis were more emotionally exhausting, but this was a 24 hour, chock full appointment.  The primary investigator offered it this way so that we didn’t have to make two trips, and I didn’t have to take two days from work, but I do not know that I would do it again.

We did the following:  4 hours of developmental testing, about 2 hours of me answering behavioral questions, an ecg, physical exam, nasal swab, rectal swab, eeg electrode placement, awake eeg, more physical exams, inpatient admission, sleep study (I use that term loosely), and morning blood draw.  We got there at 9am on Friday and left at 9am on Saturday.  There was little to no downtime. 
Any parent who has been through developmental testing with their autistic child at any point (so everyone) knows what it’s like.  But let me try to explain for those of you who have typically developing kiddos.  Your kids pick up words, they communicate, they draw, they play with toys, and they learn games.  Nathan does not do any of these things, at least not without major pushing (and shoving).    So when he starts saying “bye bye”, even though I have to tell him to say it each and every time, it is beyond HUGE.  It is earthshattering and the highlight of my year.  When he turns his head after I call his name, it is major improvement- to us.  Unfortunately, there are no developmental tests that convey this.  And him turning his head to me somewhat more frequently after fewer prompts, really doesn’t mean much to these evaluators.  So no matter how good I feel about Nate’s “progress”, which for him truly is huge progress, it is not going to be big to those we encounter in these tests.  I always, no matter how prepared I feel, come out of these things feeling deflated.  And Friday was worse than usual- Nate was just not himself, he had been coughing and sneezing quite a bit, which I let them know about in advance, and was just acting listless- which I also told them.  One of the “tests” we have to do involves us “playing” for 15 minutes.  Yes this is a test.  And it would be nice if they would at least swap the board books out once in a while- getting tired of “I love you through and through”.  Just saying.  Meanwhile, Nate spent a good portion of these 15 minutes lying on his back putting his fingers under the door.  AKA, he would NOT be engaged in “productive play”.  Sorry folks.  At that point I didn’t even have it in me to chase him around with the foam blocks or shape sorter.  After he kicked them at me the first 3 times, I decided to wiggle my fingers under the door with him.  Hey, it was interaction, he found it quite amusing.  It’s the best we could do Friday. 
It’s just hard; trying to then explain the “progress” you have seen to the psychologist, neurologist, research assistants, pediatricians, etc.  I would sit there and say, yes he does some of that more frequently, or less frequently than previously, but then  I would give it a numerical value, which by the way sucks big time, and it would be the same.  And I would think about it and realize it was maybe just a hair different in the grand scheme of things.  The problem is, that tiny amount is everything to us right now.  It’s all we have.  And I don’t need to be reminded how little it actually is.  I know.  But I need to remain hopeful and positive.  This crap just doesn’t help that process.

The last time we did all of these assessments, this was the end of our day.  We came back another day to do all of the physical testing and the sleep study.  One major change is that the sleep study is only one night instead of two this time.  I guess they proposed this change to the research board after Nate’s major issues the second night last time- he is only #7 in this study, that’s the theory I am working with anyway.  That was the major reason why we thought it might be ok to do this all at once.  I don’t know if we made the right decision….I have 6 months before we need to do it again, so I will have to think on it. 

By the time we got to all of the physical stuff, we were both just spent.  Nate didn’t even move when they did his ecg, didn’t even flinch until mommy took off the electrodes.  We got about an hour of downtime, and I took him to a little playground they had outside of the pediatric unit and as any good autism parent would, I let him swing the entire time.  I hoped it would calm him for the task ahead.  When we got back to the room, we were informed that because of his cough and runny nose, he had to have a nasal swab- there is only one pediatric unit at NIH and there are immunocompromised patients there- something I understand all too well.  They swabbed Nate, and then he had to wear a mask in the hallways to protect others.  We then went upstairs to the sleep study lab for electrode placement.  Rajiv is the tech they use for the kiddos, and I will admit that he is very patient and good with them.  He remembered and loved Nate, as he did beautifully for the first placement.  It requires the kids having to sit very still for over an hour (best case scenario) and also tolerate having their head not only touched constantly, but also having basically a smelly blow dryer held over each electrode after placement to help it dry.  Great, head touching and high pitched sound for a child with autism- I am just grateful it wasn’t Jack; he would not have tolerated this AT ALL. 

The first time Nate had this done, back in November, he sat on my lap and watched Happy Feet.  He whined and swatted at Rajiv some, but overall, I was told that it was a dream.  And last Friday “according to them” went pretty well too, as Rajiv didn’t get bitten, spit on, etc.  To me it was extremely traumatic.  I almost cried, and I consider myself pretty tough.  Nate was just not having it last Friday.  He was fighting the placement with everything he had, and after about 90 minutes of holding him down (me), the doctor finally suggested the papoose.  The only way I would agree to this was if we kept his hands out- I wanted to hold his hands- the board and Velcro straps still kept him from arching, flailing and kicking, but I didn’t want it to be completely dehumanizing for him- I just couldn’t do it.  I have rarely seen Nate hiccup from crying so hard, but I did last Friday.  By the time we finished, his eyes were rolling back in his head, his little body was desperate to just go to sleep and make this end.  But they wanted me to keep him awake for another two hours, until “bedtime”.  So I did- he had dinner, he played with me; he was in pretty good spirits.  Then we went to bed.

Nate fell asleep beautifully at about 9:30pm as they came to get him late (grrrr).  And then he woke up at 2:30am and never went back to sleep.  I tried everything, and he did doze off and on, but he had electrodes at his eye creases and by his facial muscles, and movement monitors on his legs, which he tried to kick off with the effort of an Olympic athlete.  At 4:30, Rajiv came in and said good morning, which obviously confused me.  The only thing I can figure is that he has been told that if the child goes two hours without sleeping he can end the study early and go home?  Of course, before he left, the electrodes had to come off.  So what did we do at 4:30 am?  That’s right, we made Nate sit still AGAIN and deal with having adhesive remover rubbed all over his head and sticky electrodes pulling his hair.  It did not go well.  Then we were shuffled back down to our inpatient room, where we had to sit until 8am to await his blood draw.  Which they had to attempt multiple times.  Then we left and went home.  Nate and I slept until about 2 pm Saturday afternoon. 

I got a call from the doctor yesterday.  Nate’s nasal swab was positive for rhinovirus and/or enterovirus.  Which explains so much of Friday.  It also explains why I have felt like death for the past few days.  More concerning is that Nate’s ecg showed some nonspecific abnormalities, although the doctor said this could be related to the illness.  Nate has to have a repeat ecg when well enough- hopefully tomorrow as this mama is not comfortable waiting. 

Needless to say, this was not a pleasant experience for me, and especially not for Nate.  His medication trial is over now.  They will follow his development for the next year.  We are not restricted on treatments for Nate at this point- which is a good thing, since we are seeing someone new….Thursday.  Nope, I don’t mess around…

Saturday, 12 April 2014

Why Autism Parents Don't Share- Autism Awareness Is Not Reality

I know that you are waiting to hear about our NIH appointment, but I am still processing some of it and frankly not quite ready to talk about it yet.  Everything is fine; it was just A LOT, that’s all.
Also, I need to vent.  This is still “Autism Awareness Month” right?  Or more appropriately in cases, Autism Acceptance month, or Autism Action Month.  I actually prefer both of those.  So here’s the thing.  Many of us autism families just don’t tell you much.  Yes, I have a stinking blog about my family’s life with autism, I know.  But even here, most of the time my writing is reserved for funny stories, or really major life/medical events.  The day to day, which by the way, is just grueling, is not entertaining, it is not glamorous, there are no “heroes” and there is not much to say except  that I’m freaking exhausted and half the time feel like my kids are snickering behind their doors, saying “almost! We almost tipped her over the edge tonight- how much further do we have to go??”  And as a mom I feel chronically inadequate, and judged.  Mostly, judged.  My kids don’t act like other kids, they just don’t.  And while it’s not anything that I did, and I know that, I am fragile.  I am very sensitive to comments from others, and quite often more willing to accept the negative about myself, it’s always just been easier for me to believe those things than it is for me to believe” you are an amazing mother” or “you are doing a great job”.
This brings me to the point of why, even though I share here, I keep my boys’ diagnoses from many people in my life.  Honestly, I don’t want to hear it.  And even when I think I have heard everything, there is always some special person who exceeds my expectations when it comes to ignorance and flat out rudeness.  I have been at my current job for almost 8 years, so since before I was even pregnant with Jack.  All of my direct coworkers, aka, all of the transplant coordinators on my team know about the boys’ diagnoses.  I mean, I take FMLA for appointments, and have therapies and IEP meetings in the middle of the workday, so that’s kind of necessary.  Plus, we work fairly closely for people who have rarely met face to face.  Anyway, I shared this information with much trepidation, and frankly it is still hard to share if there is a new team member, but with those guys, I do it.  And everyone has been extremely supportive, for which I am extremely grateful.
However, I have two other large groups of people I work with on a daily basis- case managers that work for the same company as I do who I speak with about my patients and then transplant coordinators from all of the different hospitals that I work with.  I know many of these professionals “well” in a work way, so you know, hardly at all, but we can talk and joke for quite a while when we call each other.  Almost none of these people know that my kids have autism.  To put this in perspective, these people did know when I was out on maternity leave 7 years ago- I have worked with them for that long.  Still I do not share.  I am unwilling to risk one of the very predictable reactions.  Which are:
a.        “How do you do it???  You poor thing!  Your kids are so lucky- keep fighting, sis boom bah!!”
This is a positive reaction- of all the possibilities; this is what I hope for.  I still don’t want it because it is emotionally exhausting to go through this “dance” over and over again, but I will take it over the other options.
b.       “Oh, my nephew twice removed who I met once in 1986 has autism- can’t remember his name right now, but he had some speech and now he’s fine- your sons will be fine.”
c.       I am sure they ARE fine- autism is so over diagnosed these days- heck I would probably have autism if I was a kid now.  (well, if these are your best social skills….no I will NOT be mean)
d.      That’s just the “designer” diagnosis of the decade.  Back when my kids were little it was…….blank…..someone told me my kid had it, but I took care of it by blank and they are fine now.  This is by far the worst one.

Why is “d” the worst?  Well let’s see, first it invalidates what my family is going through, which is always special- it implies that my kids don’t really have any issues, but the professionals who love to label everyone with something have “chosen” to put my kids in this box.  And I, as a sucky parent, have accepted this box.  If only I were strong like this person, I would have persevered, ripped the label off of my child, and strong armed my way through a system that clearly doesn’t recognize how perfect my child actually is.  Well duh.

This happened to me on Thursday- one of the transplant coordinators at a facility which will remain nameless, who covers an organ which I will also leave to the imagination, was talking to me about her husband who has been ill. I was expressing my concern, when she started talking about how uncomfortable the cots are for caregivers in the hospital.  I can relate to this from staying with Nate in the past, and with our upcoming trip to NIH, and stay on just such a cot, I felt her pain.  I shared this with her, and explained that the boys have autism.  This is one of the coordinators I have worked with since 2006.  First time sharing.  Seriously. 

And so it began- my reminder of why I never tell anyone.  I will first remind you that this woman is a nurse.  Ha.  So, she starts going on and on about how the “thing” was  ADHD when her son was little, and she could tell people “thought” he had something wrong with him, so she took it upon herself to “fix” it.  How, pray tell, did she “fix” her kid’s ADHD all by herself?  By strapping him in his high chair and leaving him there, to “teach” him to sit still.  When he needed a break from that, she isolated him in his playpen so the space was limited.  Apparently this worked like a charm.  When he was older and got one “negative report” at school, she walked through the hallways at the school and stood in the doorway daily giving him, and I quote, “the stink eye”.  And that took care of that.  How do I explain that likely my son’s aide, special educator, speech therapist, teacher and OT might think it a bit odd if they turned around and saw me sneering at Jack in the doorway?  Especially if the office didn’t notify them when I came through security that I was coming in for a “stink eye” therapy session.  Seriously?  And ya think you know someone.

Thank gawd for instant messaging at work, so I could vent to my coworkers, one of whom said “wow, great thinking mommy dearest”.  The other said “crap, I totally forgot to tell you about high chair therapy, sorry about that!”  Seriously, she could have saved me a lot of time and money. 
So this is someone I have worked with for 8 YEARS, who is a nurse.  And this is the reaction I get.  Autism awareness- not happening.  So while I would prefer autism acceptance and action, clearly we have not gotten past step 1 in the process.  How depressing is it, as a parent, especially one who works in the health/caring professions, to realize that?  Please stop judging a situation you know nothing about people.  If I had wanted to, I could have explained to this individual that both of the boys have been diagnosed at some of the most reputable institutions in the world (Hopkins, Children’s National Medical Center, NIH just to name a few), that this is a medically diagnosed condition, and one that both kids have been having professional therapies for for years.  I could have explained how involved their IEP’s are, or the fact that even with all of these interventions, we have needed to have the kids in 4 different elementary schools thus far, and our oldest isn’t even 7 years old yet.  I could have talked about how difficult it is to take the boys anywhere without encountering a meltdown of some kind.  Instead I said, “I really hope your husband feels better soon.  Have a good weekend.” 
Next time I call, I will say, “wow nice weather we have been having”.  Or “did John Doe who tested positive for heroin ever show up for his consult??”  I will not say, “how is your son’s treatment for his likely severe, intractable, and yet unexplained claustrophobia going?”  “Has he blamed you yet?”  “Has his son fallen out of his highchair yet because he for some reason that he cannot explain refuses to strap him in?”  Nope, I will pretend this little conversation never happened.  I will go back to being “Jennifer with the authorization for….”  It’s much less disturbing. 

Wednesday, 9 April 2014

My Amazing Nephew- Engaging Nathan

It has been a super eventful week, sorry if I haven't been around much.  This last Sunday was my baby sister's baby shower up in Pennsylvania.  One of the best parts of the shower for me was that my older sister and her kids came!  They live in Indiana and we don't get to see each other too often, so it was a real treat.  They spent several days at the Smithsonian, but Friday night they came to our house for a very casual dinner before we headed up to the shower the next morning.

I love that I never have to explain a thing with my sister, first of all.  She is a special educator, and even if that wasn't the case, she has made it her business to stay informed about what is going on with the boys.  Not only is she very aware, but so are her kids.  They are so good around the boys, very tolerant and considerate.  We last saw them at Thanksgiving, and at the time, my sister's youngest son, who is about a year older than Jack was really working on getting Nate to "play". 

Nate is a very affectionate little boy with people who he knows very well.  However he is very distinctly uninterested in other children for the most part.  In other words, he ignores them.  It has always been pretty tough for Jack, and he has for the most part given up on trying to play with his brother (and yes, of course this makes me sad).  It has to be said that they are a tough combination, as Jack really doesn't understand personal space, etc, and Nate doesn't want anyone too close.  Anyway, at Thanksgiving my nephew was tickling Nate, and he was laughing like a little maniac.  Usually if another child tries to tickle him he screams and runs, wants nothing to do with it.  So this was great progress.

My nephew clearly came to our home on Friday with a mission.  Nate WAS going to play with him.  He did not give up all evening.  At times, both my sister and I reminded him to read Nate's cues, like when he screamed or ran away (lol).  But for the most part, Nate was interested in G- he giggled like a maniac when he tickled him, and he did run away and throw himself in my lap, but he did something very different from what he normally does when he is in this situation.  He turned around to see if his cousin followed him, and kept laughing.  Then he got back up and engaged with G in this "play" again, and when he needed a break he would run back to my lap.  But it was very clear interaction- very much so back and forth.  And without question it was a huge change for Nate.   He even attempted to say his cousin's name at one point

Me being me, I found myself crying.  Just seeing Nate respond to another child positively, to show interest in continuing an interaction, was amazing.  And his cousin was LOVING it.  At one point, my mom asked G what his favorite thing of the day was- meaning which Smithsonian exhibit of course, and he without hesitation replied "Nathan".  Sob.

When the kids left, Nate stood in the window watching for a long time.  He was still laughing.  He kept turning back to me and grinning, it just melted my heart. 

I want to say thank you to my nephew for being the amazing little boy that he is (this is true for my older nephew and my niece too of course), and I want to say a special thank you to my sister and brother in law for raising such a considerate, loving, and frankly, persistant little boy.  He soooo made my week!!

Here is an awesome pic of my mom, me and my sissies from the baby shower.  I love these ladies more than words can say, I don't know what I would do without them!  They keep me sane and encourage my craziness and hold my hand through the most difficult times in my life.  Love you all so much!