Perseverance

Perseverance - noun - steady persistence in a course of action, a purpose, a state, etc. especially in spite of difficulties, obstacles or discouragement.

Today Little Man once again demonstrated impressive perseverance. This afternoon at the park a whole cluster (yes, that's the technical name for a flock of children ;) ) of kids were playing together. Little Man may not get the intricacies of many forms of play, but running around a playground is just up his alley. At least in spirit.

You should have seen this kid. He was "it" and every kid at the park - yes, even these little tykes in the picture above - could outrun him. Did he give up? NO. Did he cry? NO. He just kept pushing and pushing and trying his hardest. At one point a girl jumped off the equipment right in front of him, but she slipped coming off and landed on the ground. Should be an easy tag. Nope, my precious little guy stopped right there and asked if she was okay before continuing to chase the other kids. He is so very tender and sweet.

At one point Beans came and sat next to me. "Mom, Little Man can't really play tag with the other kids. He runs and tries but even the little ones can go faster than him." He let out a sad sigh.

"It must be hard sometimes being a Little Man, huh." I replied.

"Yeah...but sometimes I go slow and make sure he can tag me so he isn't left behind." Oh little Beans, you sure watch out for this brother of yours.

When we left the park Little Man could hardly walk at all. We had to stop and rest so he could make it back to our stop. You can see on his face just how hard he worked. His was the only red face in the whole group.

My dear sweeties, you have so much tenderness and compassion. You work so hard to get what you want. You have the whole world out there waiting for you, keep up the good work. <3 <3 <3

The Search

When you have a special kiddo with multiple issues but no overall diagnosis it's like being lost in a land without road signs. Sure, you treat each problem that comes along: flat tire - change it, seizures - give them meds, run out of gas - stop at the gas station, delayed milestones - do therapy. When you have a collection of "minor" diagnoses, but nothing that explains it all, or how all these pieces fit together, you're constantly wondering if you should be doing more, if there's a treatment that could make a difference.

All the new information about Little Man this week has reinforced the need to at least keep looking for that big answer. I was talking to a dear friend of mine who is in a similar situation with her own son. When you take your child to different specialists, sometimes its hard for friends and family to understand. "Why do you want something to be wrong with your child? Why are you hoping this test or appointment or whatever gives the big diagnosis?"

The truth of the matter is that no one wants something to be wrong with their child, but sometimes things aren't how they should be. People do not simply pass out or bruise or shake or have trouble learning without a reason. I think most every parent of a special child who has been waiting for an answer is both relieved and disappointed each time that reason eludes them.

On the one hand, you can secretly hope that if they don't find the answer that somehow things will turn out okay and this will have just been a phase. On the other hand, you know that something is wrong and it's much easier to fight the enemy you know, than the one you don't.

Having an answer doesn't necessarily mean having a cure, or even better treatments, but it does give you an idea of what to expect. Finding out your child has something treatable would be amazing, finding out it's something chronic but stable would at least mean your child wasn't going to get worse, and finding out it's something progressive would be absolutely devastating and yet at least you could make decisions appropriately.

The search is a very personal decision, but please understand that if you're not involved in the search for your own loved one, the emotions and choices are felt very deeply and we're all doing the very best we can for our own children with the information available to us right now.

Neurology

Today Little Man saw neurology. It was a fairly productive appointment, though we're still looking for the big answer. The best news is that there were no vascular abnormalities found in his brain the other night. Very good news for an 11 year old indeed! :D One of the things I didn't realize we had to worry about, but now we know.

A few interesting Little Man-isms were added to the list today, though we're not sure what the significance of them yet is. His eyes are always dilated, he's weaker on the left side, and his tremors are no longer just hand tremors but involve his entire arms and sometimes his whole upper body.

There is a lot of concern about his staring spells and also his slurred speech/clumsiness/spacey episodes. These could be more seizures or could have to do with something else, possibly blood pressure? His bruising and vascular system earned him a referral to hematology to further explore what's happening there. He also needs to have regular follow up with neurology in Connecticut - none of this occasional appointment then nothing that he's had a couple times.

Genetics also needs to be involved to see if we can find the root cause of all his issues, and to further explore the connective tissue disorder. Instead of being a cute party trick as we've previously thought, this could actually be serious.

And...just to keep us busy...he needs to restart physical, occupational and speech therapy. I think we've got enough on our plates to keep us busy for a while. They want a lot more extensive testing done in the neuro/hemo/genetics departments. Guess we'll get our crash course at CCMC. They did say that CCMC is a great hospital for neurology though which makes me happy since they'll be so close.

Overall, pretty much more of the same for now. Be cautious, be extremely careful about him becoming dehydrated and be careful in things like baths or activities because we're not sure when he may have a seizure/become unconscious. Really though, he's the same kid he's always been, we just know what to watch for a little more now.

What???

Yesterday and today have been full of shocking news. None of it I can actually believe or process right now so it's just going to come out however it does. :P First of all - the Boston police found my car!!! It was stolen two weeks ago tomorrow and I was sure it was in a million pieces by now. I spoke to my insurance agent yesterday and he agreed it was probably a lost cause...and then my phone rang tonight! I don't know if the chair and medical supplies are still in it, but the police said the only damage they see is the passenger side rear window was broken which we knew from finding the glass where it was stolen from. No body damage and they said the ignition looked fine. I'm not sure how that's possible, but my life is pretty unbelievable right now. My insurance is going to tow it to their lot (right now it's in a secure police lot), inspect and repair it and then I'll have my wheels back!! I can't even believe it's true.

Little Man was here alone with me when the call came in and we both almost started crying. Little Man has always latched onto objects more than people, especially our cars. So when this one was stolen it was like having his arm ripped off. Finding out we're getting it back was the biggest relief to him.

Secondly, the neurology department from Children's Hospital Boston called me yesterday (Friday) and they want to see him Monday afternoon. I was in total shock again. You just don't get specialist appointments the next day (well, next business day) and they don't even have a problem accepting his out of state insurance. CHB is supposed to have one of the best neurology departments in the country. Perhaps we were incredibly lucky to be here when he had his latest seizure. When you have a child with numerous diagnoses and are in search of the overall cause, when you've been searching for years to the cause of all these issues, I'm almost afraid to hope too much for an answer...but yet...when they take an interest in him and want to follow up immediately...sometimes it's hard not to get your hopes up.

Our life seems to be quite bipolar, switching from really low lows to really high highs with no notice but I suppose that's what keeps us going. Welcome to the ride! :D

The Morning After

This morning Little Man is completely back to his normal self. You'd never know yesterday was so exciting other than the few new bruises that blend in with the rest of his collection. Let's just say the nurses and doctors definitely saw what I meant by him bruising easily.

So basically, I was on the phone yesterday sometime around 11:30 and Little Man was in the bath. I had Beans check on him and he was fine. I went to check on him a few minutes later and turned the corner out of the living room to see Little Man laying face down in the hallway, naked, wet and not moving. I called his name, shook him and got no response. Looking back, I probably should have called 911 then, but I continued trying to get him to wake up for at least a couple of minutes with no response. Finally he started to move a little, but his speech was very slurred and pretty much not understandable, he couldn't walk or anything and was very lethargic and out of it still.

I managed to get him onto the couch and knew he had to go to the emergency room. Out of panic I suppose, I was trying to figure out which subway stop would get us closest. I finally realized I had to call 911. I'm not sure what took me so long as it should have been obvious. The 911 operator had me lay him on his side while we waited for the ambulance and I sent Beans outside to wait on the front porch and bring them up.

When the ambulance arrived, Little Man had good vitals but was definitely still out of it. The EMTs were very sweet with him and with Beans and had no problem with us riding with them. I was expecting Children's Hospital to confirm the seizure, monitor him for a while, and send us on our way.

Awake but still very lethargic around 4:30

After the initial thousand questions (What happened? What diagnoses does he have? What meds is he on?...) and making sure he was stable, neurology came to examine him. Now, most of the time it's great to hear words like "impressive" and "wow" and "amazing," but when you're at a really good children's hospital and neurologists are examining your child you'd much prefer to here "uh-huh", "that's good", and boring words like that. What you really don't like to see is doctors coming into the room to see your child perform his "neat" tricks. You can guess what happened yesterday.

Little Man's hypotonia, hyperflexibility, tremors, easy bruising and weird tear marks under his skin got a lot of attention from neurology. They decided he needed to have an MRI/MRA that day. (MRA = angiogram, looking at the veins in his head using dye). In order to have the MRA they needed to place a large IV. This is where things got more interesting. Little Man has pretty much see through skin so finding a vein is not hard. Apparently though, that spider vein comment from when he had his scope done in May came back to haunt us. Three tries, two nurses, many ins and outs and digging around later and who knows how much time, and Little Man finally had his IV. The nurses commented on his spider veins again (two separate hospitals 1000 miles away, didn't realize this was a technical term :P) and how they branched off weird or something. Plus they said that his low tone was making it harder because the vein was moving or stretching or something and the tone made traction harder. Anyways, he was a brave, brave little kid. He didn't cry, fight or even flinch. Child Life was quite helpful bringing in an iPad with Lego Harry Potter on it.

Lego Harry Potter on the iPad around 8:30 - much more with it

After the IV was placed it was pretty much a lot of waiting around until the MRI was free. Little Man was much more with it and seemed like his normal self for the most part. At 10:00 they came to take him to radiology. The nurse, anesthesiologist and techs were all so good to him. The anesthesiologist was joking around with the kids and told them that if he did anything to hurt Little Man that they could wait at his car to ambush him when he left work. :P

Mr. Anesthesia first gave Little Man some Versed in his IV then asked him if he felt anything or felt silly. "Nope, not a thing." was the answer. Then he got a little giggly. He started talking about the butterflies on the MRI machine, Mr. Anesthesia then gave him propafol and out like a light he went. All very peacefully. The scan took about an hour and a half during which time Beans and I had the entire radiology waiting room to ourselves and I Skyped with Pax to keep myself distracted.

After the tests, Little Man did not want to wake up for anything. Course, it was after midnight and I didn't want to be awake for anything myself so I didn't blame him one bit. Finally around 1 am he was arousable enough that they let us go back down to the ER. The neuroradiologist reviewed the tests and didn't see anything that needed emergent treatment so we were cleared to go home as soon as Little Man was awake enough. Neurology will be calling us with further results and more of a plan.

Beans lovingly taking care of his brother

Beans did very, very well and I didn't realize how worried he was until the doctor came in after the tests and said that Little Man was okay and we could go home when he woke up. As soon as the door shut behind the doctor, Beans cradled Little Man's head in his arms and started sobbing. He finally admitted that when he saw Little Man laying on the floor, he thought he was dead. Oh my poor little one!

So what exactly happened and what does this mean? Well, Little Man had a seizure which is what started this whole thing. He was diagnosed with seizures in the past, but they were mainly subclinical (not outwardly obvious). His seizure on the bus a few months ago was the closest thing he's had to one like this though. He is already taking seizure medication so it's kind of a wait and see...wait for neurology's call and to get him set up with all his new specialists up here to make sure he's getting proper treatment. Ironically, the seizure seems to be almost the lesser issue in the big picture though.

In his examinations yesterday, his blood vessel/bruising issue was brought to the forefront. His hypotonia and hyperflexibility were very much stressed as an issue. His tremors and coordination and motor skills are also much more of a concern than had previously been realized. In addition to all that, there's a likelihood that there's an issue with his blood pressure getting to low and/or strange vein compression or dialation that's affecting the blood flow to his brain. There is a diagnosis that covers most of these issues that has been thrown around, but I don't think he's actually been diagnosed with it yet. He's going to require a lot more follow up and testing and yes, more doctor visits. Thank goodness this all happened here, in the heart of good medical care, rather than when we were in Florida. Apparently moving to New England wasn't essential only for Little Man's education, but for his health as well.

Another Update

It's almost midnight now. Little Man is finished with his tests and in recovery. I saw him a few minutes ago when they transferred him from radiology to the recovery room and he was still completely out. His oxygen levels are good on blow by oxygen. I don't have any results yet, after he's finished in the recovery room they'll take us back down to the ER where we find out what's next. Thanks for all the calls and texts and especially to Pax for Skyping the whole time he was in and keeping me distracted.

Update

If you missed current events, check previous posts.

We're still at Children's Hospital Boston. Apparently things with Little Man are a bigger issue than I thought over the past while. They are very concerned about his veins, hypotonia, bruising and something else. They just placed a large gauge iv to do the MRI/angiogram with to check the veins in his head. There's a possibility today's issue is due to some low blood pressure or vein problem in his head. It's 8 pm and they still have to do the sedation, the tests, then recovery and then we'll go from there.

Unconscious

Quick update: Little Man had a suspected seizure. I found him unconscious, face down in the hall. Boston EMS transported him to Children's Hospital. When I got him awake his speech was too slurred to understand and he was very disorientated. He's pretty much back to normal now. We're in the Emergency Dept here (CHB) and they've done an EKG to rule out anything with his heart and we've seen 2 neurologists. They're now trying to get him in for a brain MRI/MRA with sedation right away. Neuros were very unimpressed with his floppiness, which is the norm for him, and his strange red dot bruising. For now, we wait and see what the teams decide.

What Makes A Family?

This time spent having another adult around so much of the time has brought to the front of both my thoughts, and the kids thoughts, what it would be like to have a co-parent. I've realized that having someone around who is ready, willing, able and loving when it comes to those every day challenges of having my two kiddos, having someone patient that they adore and that I really enjoy having around is a totally different ballgame than my initial take on co-parenting. At this point the kids have had no contact with their biological dad in 18 months, haven't seen him in around 4 years. This past month has flipped their world upside down and in such a positive way.

It's one thing to be told that your family loves you, even if they don't live with you and you only see them on special occassions. It's an entirely separate entity to be in close companion with a co-parenting figure. The kids still know that Mom is boss and that's the way it is. I'm still the one they come to for their deepest heartaches, but they now have two other adults that they are both extremely comfortable with and, have on occassion, referred to as dad. Now don't be jumping to any conclusions here, I'm just saying we're all finding a new dynamic of our intimate family. The kids now have two people, and a very close third, that they can talk to, snuggle with, play with and tell their deepest hurts and joys. When Uncle J leaves for work in the mornings Beans must be pried off him. He would love to go spend the whole day with him at work. As soon as J is home at night, he can't even get in the door before the kids are wanting him for this and that.

It can make for awkward situations. When Beans doesn't want to leave the house of the other person he's decided is his dad he will hold onto him, crawl into his lap, and beg me to just leave and let him stay there. He's constantly begging to take this person into our family...and his dogs and cat too....oh heck, he'd like the bunnies too, who am I kidding? ;) Beans will cling and cling to this person and try to shoo me away. It's like he's found something that he's been increasingly missing this last while. Beans has found his own little spot in the world, where he knows he's brilliant and just as importantly knows that being brilliant is fabulous! There's a change that has come over him. His tube is no longer anything he's ashamed of. It is what it is and that's no big deal. He takes great joy in learning things and sharing what he knows. Yes, to some, I suppose that's perseverating, but for him, it's a new found confidence and pride in himself.

Beans and Little Man's biological dad has no clue what he's missing out on. All he could see were hours and hours of screaming, very slow progress, weird behaviors, "kids with issues." He could never see what they truly are - absolutely amazing, blossoming individuals who are well loved and treasured by a great number of people. While it's sad that they can't have that reassurance from their bio dad, in this situation it's probably more healthy, and definitely more realistic to have their fill-ins.

They deserve to be seen as people first, not as series of issues. They deserve to have people truly excited for their newest milestone or obsession or achievement. They deserve to have people see them as whole and complete people, just the way they are. They deserve above all to be loved and cherished, respected and to be treated kindly. A family doesn't have to be those select few that your genetics directly trace from, a family is all those who care about you, who love you, who stand by you, who hold you when you cry and scoop you up and get you right back on your feet. Family is who we choose it to be and my kids and I are very blessed to have the family we do.

And Then We Hit a Bump

A bump. A very big bump. I think it's more of a hill or a mountain than a bump actually. Sometime between parking my car at 9:30 Sunday night and 8:00 Monday morning my car was stolen. My 6 month old car that I depend on to get the kids and I around town, between here (Boston) and West Hartford (where we're moving) and most importantly to medical appointments. I have full coverage so eventually insurance will pay for it, but the people who stole the car took away much more than insurance can/will replace.


Most importantly, Little Man's new found freedom in the wheelchair he was just given was in the trunk of the car and is now gone. Without a car we've had to rely on public transportation and his little body just cannot hold up. He's tripped so many times, even wearing his AFOs (leg braces) and his feet and legs are a mess. Before the chair we got around by driving directly where we were going and minimizing walking as much as possible. Basically we didn't go out more than we had to. The car insurance will not cover replacement on any of the personal contents in the car. Eventually, after we have things set up and go through all the new doctors, specialists, appointments and everything, we can try to get his health insurance to replace it, but all this takes time.


It's heartbreaking to see your 11 year old stumbling along while you're trying to make sure the kids basic needs are being met. He's so brave he rarely ever complains of pain, then you get home and his ankles are swollen and look bruised and he can hardly walk through the house. Some days are definitely better than others and I'm not sure why that is. Just one of those things I guess.

This heatwave is making things even worse. Neither Beans nor Little Man cope well with the heat and not being able to hop in the air conditioned car has been just another strike against them. Beans has been teetering on the edge of needing IV fluids for several days, so far we've been able to hold them off and its supposed to cool down tomorrow so I think we'll make it. I've been bolusing tons of Pedialyte into him. He's been getting < 350 calories per day because the formula makes him so sick in the heat.

There aren't even words for how frustrated and heart broken I am right now. I just want our family to have a good life. This is just another stumbling block and we'll get through it, I know that, but it's a huge setback in getting things done. Thank goodness for family and friends cause without their support right now I'm not sure how we'd pull through. One day at a time. When I have these precious faces to look at every day, how can I not just pick myself up and keep moving?

Ramblings

Yes, another rambling post. I can either try and make it short(er) with my random thoughts or write a novel in well thought out paragraphs. Since I still have a million things to do tonight, guess which it's going to be. ;)

Yesterday we tried out the park in our new hometown. It was finally a cooler day, Beans had a water bottle with a fan, we were well stocked in Pedialyte, and there is a splash pad there. Between everything the kids were able to handle the temperature and played for almost three hours. There were a ton of kids there and both of mine, but especially Beans, loved playing with them. I'm sure we'll be spending plenty of time there - and they have fall soccer so Beans will be thrilled!

I'm still working on getting our apartment. :( I'm really picky about the area and there aren't that many apartments in that area, especially ones with empty units, so the hunt continues. There's a certain elementary school I would much prefer the kids go to (Beans will go to the school we're zoned for, Little Man will go to whichever full time special ed classroom the district determines he best fits in), and for sure a school district I want them in so I'm hoping I can find the perfect home for us...or at least one we can deal with for a year that's in the right area.

Our friend Pax gave Little Man the most awesome gift - his old wheelchair. Little Man can definitely walk, but he's so floppy that it's hard, takes a really long time and usually ends up with swollen, hurting joints. When we took a trip to the mall with him in the chair, for the first time I literally chased him! Now I've "chased" after him as he's wandered off a million times, but this time I ran after him! He is so thrilled with the new freedom.

The drive between Hartford and Boston is so beautiful. I'd prefer it was a bit shorter since we're making it so often right now, but I have to admit I love driving through the hills surrounded by trees. It reminds me of I-80 by Park City in Utah in summer, but more green and less steep parts. :P

I suppose it's time to get meds and a feed done. Keep your fingers crossed that we can find and get into the right apartment for us. I really love this area and am so thrilled with our move, if this last detail will fall into place we'll be set!

Confessions

Confession 1 ~ I have had more fun in the past week than in a very long time.

When you're mom to two special needs kids, you (well, I) don't stop to think about what you could or would have been doing, you do what needs to get done and you enjoy every day laughing and playing with your kids. You realize that they are such a treasure, such fabulous little monsters, that you would and have given up almost everything else to care for them.

This past week I feel like I've jumped back a few years.. Yeah, I still have two monkeys to care for, but I've managed to do that while going out and having fun, and they've had a lot of fun while doing it.

Confession 2 ~ I really need to get a sitter and/or nursing set up here.

As much as I love having them around, sometimes a person just wants to go do something without having rugrats in tow. This weekend we went to Connecticon and, for the most part, it was fine having the kids along, sometimes they even made it more fun. Then there were the times when Little Man got overstimulated and had a meltdown after we'd waited in line a really long time for a show. We had to leave before the real show even started because he couldn't handle the volume of the music and the crowd of people. :( Beans and I were both so disappointed and, I know it's not fair, but I admit I got frustrated with Little Man. Beans was on the verge of tears when we walked out, but there was no saving the show as Little Man was already grabbing his head and screaming. *Sigh*

Beans is getting older and wanting to do more exciting things, things that Little Man cannot handle. I really want to be able to take him to these things, he absolutely deserves to have his own space, and it may be the unspoken secret of parents, but sometimes I want to have fun too. :P

Confession 3 ~ There may be something to this two parent setup.

I have gotten terribly spoiled this last while, between my brother and friends I've been able to get a regular break and we've spent quite a bit of time tag teaming where I've taken one kid and someone else has had the other. What a nice arrangement this is! :D Our whole drive up to New England from Florida my brother and I each had a kid, at the mall and at time during Connecticon this weekend Pax has taken one of the kids, I'm beginning to think maybe there is a reason families generally come with two parents.

Confession 4 ~ I have a love/hate relationship with autism.

I love the way Little Man's brain works. I hate that he can't handle loud noises, gets upset in crowds, and has a hard time paying attention to things and people around him. I love the things he comes up with and the ways he thinks that others don't. I hate that it's hard for him to learn. I love the things he finds great enjoyment in that many wouldn't notice. I hate that it's hard to take him many places and do many things with him. Honestly though, if we can find a way to get through these hard things, I can't wait to see what that special mind will come up with.

Confession 5 ~ Beans is one amazing kid.

Of course I already knew this, but this weekend seeing him totally in his element I found myself in awe of this 10 year old of mine. He's so gosh darn smart. He's so social he'll talk to about anyone especially if they know, look like they might know, or happen to be around when he starts talking Pokemon. This past week he's gained so much confidence. He used to try to hide his feeding tube from everyone. Suddenly he doesn't care. His shirt comes off right away when he swims and he's even freely told people about his tube and formula. He's so very mature maybe too much for his age. Between the stuff he's gone through himself and having a brother who takes so much, he has become quite the young man. Did I mention he's amazing? ;)

Lastly, you didn't think you were going to get away without pics did you? :D

Little Man and Beans at Connecticon

Beans and Pax

I think Beans is hoping Pax will adopt him. I have to pry Beans off of him every time we leave.

Happy 4th of July!

We took a big chance going to Boston Pops 4th of July today. We left my brother's apartment bright and early and arrived at the Esplanade around 11 am. There were already a TON of people there of course, but we were able to get pretty darn good seats in the Oval.

I totally bombed the heat again with Beans. :( Sitting on our blanket in the sun he got way overheated again. Even the extra fluids didn't help this time. He had to lay down and then ended up "throwing up" thru his tube for a long time. My brother was again a total trooper, I'm sure seeing a bottle full of yuck wasn't in his game plan for today, but he got me ice and water and found some shade for us to sit in for the next few hours.

After it cooled down again, he was good to go. He ended up having a really special time with Uncle J. They tickled, cuddled, played games and had a great afternoon.


As expected, Little Man was on massive sensory overload. He was in a terrible mood most of the day then cried with his head buried into either the blanket or me for a good portion of the start of the concert. He did eventually calm down though and ended up loving the music. It's so hard to know what the best thing to do is with things like this. I can't always make Beans miss out just because Little Man can't deal with it well, and Little Man will never learn to deal with such things if I don't push him, but it did add a ton of stress to the day.
Beans couldn't wait to get his hands on one of these Statue of Liberty hats. He started asking around for them early in the day when he first saw them. Finally a police officer told him they'd started handing them out and he rushed over to get one.


The kids saw lots of new things today. Having lived in ultra-conservative Utah and then small town Florida, they've lived quite sheltered lives. Today they saw two people get arrested, a really sloppily drunk girl on the subway, and something I'm quite happy they'll be accustomed to - people of many different races and cultures, speaking different languages.


Overall it was an amazing day. I couldn't have done it without my brother, between navigating the Boston subway system, taking care of one kid when I was busy with the other, and keeping the kids from getting lost in the crowd.

A Trip in Pics

Who wants lunch when you have Angry Birds?

Little Man hardly ate for three days, but he sure made up for it tonight.

Let's Get Going....Radio in Hand
I seriously wouldn't take a multi-vehicle trip without them. I can't tell you how many times they came in handy.

Night 1 Swimming - Little Man
I swear he's part fish.

Night One Swimming - Beans
No more fear of water for this one. He got dang good at swimming the last two nights.

Uncle J tried to teach Little Man how to pull himself out the side of the pool.
I said, tried. :P

Yay! Beans showed him how again and, despite the jelly fish maneuvers, Little Man got himself out the side!

Passing the time at the toll booth at the George Washington bridge, about to enter NYC. I handed Beans the camera and he took us many lovely pics of cars, buildings, toll booth signs, and yes, this self portrait.
George Washington Bridge
We finally made it through the toll booth!

Last known sighting of the truck's passenger mirror. Oops. :P

We Have Arrived!

After a surprisingly unexciting 1350 mile drive, we were all beyond excited to park the car. :D Today was such an awesome day. Right after we crossed the border into Conn we stopped for lunch and I texted our friend Pax. We ended up stopping in West Hartford and finally meeting him and his parents in person. <3 them!

Pax and Little Man

We got so lucky on our trip. In all those miles, there was only one car accident that we got stuck in traffic for, two emergency potty breaks, and one tiny little truck mishap when the passengers side mirror went flying off in a little tunnel in NYC. We didn't realize until miles down the road what had happened which was actually quite lucky because there was no place to pull over there anyways. Good thing I bought that U-Haul insurance. ;) Honestly, it was a brand new truck and we didn't do anything to it so I'm sure it just wasn't put on there right.

Anyways, this evening we somehow pried ourselves away from Pax and his family and made it to Boston to my brother, J's, apartment. We're going to be ultra brave and go to the Boston Pops 4th of July celebration tomorrow. We may be pushing Little Man way past his breaking point into total sensory overload, in which case J will have earned his honorary parenting badge if he's somehow managed to avoid it over the past three days. Beans, J and I *really* want to go so we're going to risk it and go.

On Tuesday we head back to Weha and have appointments to see apartments. There's one complex we especially have our eye on, but it may be too expensive. I'm sure hoping we can get in there as it is the perfect location and everything.

Loaded Up

In about 15 hours we're heading out of here. The truck and car are loaded, my brother is on his way. The skies gave us a beautiful pouring true-to-Florida rainstorm to say goodbye. On to our next adventure!

Ready....set....GOOOO!

Tomorrow marks the start of our new adventure. We're loading up the moving truck, picking my brother up from the airport, and starting our three day drive to Connecticut. The boxes are packed, the house has been cleaned, the cupboards are empty. The kids have mattresses on the floor for tonight and tomorrow we take back our cable boxes so no tv or internet after that.

As with any move, there are lots of apprehensions. Will the new school district (the main reason we're moving) really be able to meet Little Man's needs? Will they be receptive to handling Beans' medical issues? Will the new insurance (crossing state lines) kick in fast enough? Will our new apartment work for us? Will we find new good doctors that are accessible and understand complicated kiddos (another main reason we're moving)? Will all the million and one details involved in moving my family 1200 miles away come together?

After doing my homework and planning for as much as I can, I have to have faith and take that flying leap. I KNOW this is what is best for my family. Now I have to work on the trust part - trust that it's all going to work out.

Adios, Florida. Goodbye to our dear, dear friends, the M family. Little Man's first real friend. My dear friends. Darling little A. Tonight we're having dinner together for the last time and I think it will be quite emotional all around. Tomorrow we'll have to say goodbye to my parents. There aren't words to express all they've done for us the past three years. Hah! The tears are already starting. Good thing I'll be too busy tomorrow to be sad for long.

All that said though, I am SO excited! I feel like I'm on the verge of a "normal" life. You know, kids go to daycare, mom goes to work, family all comes back together in the evening for activities or whatever. Yeah, yeah, maybe I'm idealizing a bit too much, but I can't wait! We will live very close to our good friend, close to one of my brother's families and not far from the other. I have great hopes for this move and if even half of them work out, we'll all be great. :D

Stormy Weather

Me (to Little Man who is cowering under the umbrella - inside - petrified of the storm raging outside): "Sweetheart, how many storms have we been through?"

Little Man: "A million"

Me (in perhaps not my most well thought out mommy moment): "And how many times have we died?"

Little Man: "NONE!" **Scream**

Oops, instead of being reassured like I intended, he took it as our luck's going to run out sooner or later.

One Food

Who knew just how much one single food could mean to a kid? Beans trial with potatoes has been an overwhelming SUCCESS!! He's had no symptoms, no signs of issues and no increase in his random breakouts of hives, red eyes or sneezing.

Do you realize what this means? When I made lunch today I made tuna sandwiches for Little Man and I, I was able to serve up Beans a plate of potato chips right along with it. On the rare occasion we go out to eat (and especially when we move and drive the 1200 miles up the east coast) Beans can have french fries or potato chips or a plain baked potato! And well, my favorite, that just occurred to me today, he will be able to go to lunch with his friends to the cafeteria when he starts 4th grade in a couple months!!! Missing lunch time has been so hard emotionally on him, missing one of the prime social times in school, going to the library when his friends go off to eat. Next year he'll be able to join in! Even if he only has his one food, he HAS a food and that is something I am incredibly thankful for.

Changes

Tonight I sat here thinking to myself just how much these kids have grown up lately. For Little Man the change has been dramatic from when we started home schooling. For Beans it's just been a gradual maturing with an understanding past his years.

Little Man still struggles with transitions and things being out of his norm, as seen most recently when I had minor surgery, but there's also been development in that brain of his that can't really be expressed on any of the standard tests, or really any test at all. It's hard to even describe, but there's an underlying difference to him. He's started expressing when he feels his head getting out of control and will even ask for his "c" medicine (klonopin - helps with anxiety and aggression and I believe has some anti seizure effect as well) before I see outward signs of him needing it.

Preparations for the move (in less than 3 weeks now!) have taken a toll on him. He's obsessing over packing to the point he'll wake in the middle of the night, go get a box and wake me up to pack something. Usually I try to get him back to sleep, but I admit we have more than one box that has been packed in the middle of the night. Packing seems to calm him, but he is a bit irritable and on edge. Transitions + autism = challenge. While he's so very excited to move close to his uncles, aunts, cousins and his idol, Paxton, he's also very sad to be leaving his best friend, T, and his grandma and grandpa. Living here has given him, and all of us really, a special relationship with my dad and stepmom. We're all going to miss having them close.

Back to the positives though, Little Man has become newly aware. He's more aware of what's going on with his body (able to recognize pain and other feelings more often). He's gotten even more caring and loving towards people. He even makes great effort to be helpful between (unintentional) destructive streaks.

Beans is growing up more and more each day. He's such a typical 10 year old, and yet he also has a compassion and understanding far beyond his years. Growing up with medical challenges is a hard thing to do, but add an autistic brother who limits what you can do, requires so much of mom's attention, and at times loses his mind and you've got quite the challenge.

Rare are the times Beans ever shows resentment or anger towards Little Man. He has been opening up more, mostly in quiet talks with me just before bed, about things. From how proud he is of helping his big brother learn to talk and play, to how frustrating it is that we can't do a lot of things his friends can because Little Man just can't handle the situation, to how much he loves being able to "watch" his brother, to how irritating it is to have your play constantly interrupted.

He talks frequently about his friend from school, C, who also has health challenges. He can't wait to meet some of our EE friends - other kids that are older, walk and talk and also happen to eat through tubes. I'm hoping that once we get settled I can get him into a support group for kids who have an autistic sibling and/or for kids with chronic medical problems.

I guess all in all, these little sweeties are just growing up. I love watching every new step of development (though not looking forward to those very quickly approaching teen years :P ). I have so much hope that this move will provide the things we need for our next step in life.

What a Milestone!!!

Today is a day I have dreamt of for years. Even before I was a mom I had those ideal images of my child being brilliant, picking up academic skills easily...well, of course he would. One of those images that has stood out for the longest is of my child wanting to and being able to read. A little four letter word that has caused so much frustration in this house. Being one who always had my nose in a book, I couldn't wait to share this enjoyment with my little ones. Seeing Little Man struggle, struggle and struggle some more just to get through a picture book still at eleven has torn at my heart oh, about a million times.

I can't tell you how many IEP (special education) meetings, developmental pediatrician and neurologist appointments and just casual discussions where I've said, "I don't care how long it takes, but I would love to see Little Man be able and desire to pick up a book and just start reading it one day."

Ladies and gentlemen....that day has come!!! Presenting Little Man and The Magic Treehouse Series Book 3:

My grandma sent the kids these books a while ago. I've tried and tried to get him interested in them - or anything really - and haven't had much luck. Then today, he picked one up, laid down on the bed, asked Beans to be totally quiet, and he did it - he started reading! Independently! No prompting! He can only read a page or two before he needs to take a break, but he came back to it on his own twice!

I'm not sure what's next in store for this kid, but he's got a whole world of possibilities that is falling into place. I can't wait to see what's next on this wild ride! <3

Some Results

The kids' GI doctor called me back Friday afternoon, well actually the nurse did but the GI walked into the room just after she asked for Little Man's mom and he got on the phone lol. He saw the biopsy reports, but didn't have them in front of them. The great news - NO eos in Little Man - he DOES NOT have the issue Beans does with food! And I don't have the official word, but it seems that Beans is in remission from his EE too! That doesn't mean he can eat whatever (boy do we wish), but it does mean that taking away all the food let his body heal and he's not having eosinophils actively attacking his GI system right now. One of the kid's biopsies, I was a little confused at to which one, but I'm assuming Little Man, did show damage due to reflux and we don't have any of the results of the impedence probe that checked for the actual data on how much he's refluxing. GI said he'll call me back this week with the full reports in front of him and we'll know from there how to proceed.

Waiting on Results

Hopefully tomorrow Dr. B will call with the results of the kids' biopsies and Little Man's impedence probe. Then maybe we'll know if he's going to need a revision of his Nissen fundoplication (stomach surgery) or not. I wouldn't be surprised if the probe didn't show much since he hardly ate or drank for the whole 24 hours it was in, but we'll see.

Our trip to Sea World was nothing short of fabulous. I rode both the Manta and the Kraken with Little Man while Grandpa entertained Beans (who was quite happy that Grandpa doesn't like exciting rides either). The Manta was awesome, the Kraken was a bit too "shaky" for my likes but Little Man loved it even more. My little daredevil.

Little Man had a couple of "hiccups" that weren't much fun to deal with, but honestly, he did pretty darn good. Grandpa was such a good sport and when Little Man was trying his hardest to tick us all off (okay, he wasn't but sometimes it sure seems like it), I was able to step away with Beans for a minute while Grandpa handled it.

We've been to Disney a couple times in the past, but I found Sea World the most enjoyable park we've been to. Not as many crowds and less sensory overload for the little ones. Add in the love of animals Beans has, and the heart for the environment Little Man has and it was a great mix.


We loved the shows and were able to make it to all the ones I was hoping to see - the dolphins, Shamu (of course) and the Clyde and Seymour pirate show. The dolphin show was my favorite. Those who know me won't be surprised I'm sure. The kids favorite was a toss up between getting utterly soaked at the Shamu show and the hysterical antics of Clyde and Seymour.

I learned a very valuable lesson this trip. This was the first time we ventured an outing without Beans' wheelchair. He's been doing so great, I was sure we didn't need it. He managed to walk through the parks okay. When he was dragging at the end of the day I didn't think much of it, everyone's exhausted after a day at an amusement park.

The next day the little sweetie paid for our day of fun big time. It started with waking before dawn with vomiting - a pretty impressive feat through his stomach surgery. Obviously not thinking, I packed us all up and got us in the car and on our way home....five hours away from the children's hospital. Not my best move ever. The drive home was miserable for Beans. He alternated between sleeping, being miserable, and more throwing up despite having his stomach constantly draining through his g-tube. By the time we got home and I checked his temperature it was over 104 and he cried with as little as a couple teaspoons of water in his g-tube.

We somehow made it through the night without needing IV fluids and he's bounced back pretty quickly. I definitely learned though - regardless of how great he seems to be doing, we always have to be aware that he is more fragile and take those precautions of using his chair and protecting him from the heat.

The next few weeks promise to be busy. I'm having very minor surgery, we have the impending results to determine if Little Man will be having his surgery, and all the details of preparing for our move. The goal is to be leaving Florida right about this time next month. Wow! Connecticut, get ready - here we come!

A Plate of Nothing, Please

Tonight marked an amazing event. Tonight Beans got to eat his first food in a year! His choice of his first food to trial - white potato. There are so many things you can do with just a white potato and some salt...and I'm sure he'll try them all over the next few weeks.

In anticipation of the big 1-0 birthday on Monday, we've stayed in Orlando a couple extra nights to go to Sea World tomorrow with Grandpa. We started the celebration of right, with a dinner out at Uno's Grill on International Drive.

Beans thoroughly enjoyed his french fries. They must have tasted like the best food you or I could possibly imagine. Our waiter was incredibly attentive and on one of his stops at the table, after Grandpa and I had assured the waiter things were great, Beans said, with a big grin on his face, "it would be nice if we could get nothing." We all giggled and the waiter went about his duties.

A few minutes later our waiter arrived at our table, prepared with a nice, clean tray of absolutely nothing and presented it to Beans. You couldn't have seen a happier kid for miles around - and we are in Orlando, home of Disney & Sea World after all.

A few minutes later a beautiful female waitress came by. "I hope I have the right table," she says. "I have a full tray here of absolutely nothing." My heart was about to explode at this point. My baby ate, we're enjoying time with my dad and the wait staff has been incredibly attentive to my son on his first day eating.

Then, up walks a young man. You guessed it - another tray of nothing for the birthday boy. We were all in fits of laughter at this point. No one at the restaurant had any idea just how special this moment was - and how much having tray after tray of nothing - when that's all he's been able to eat for a year - delivered to our table meant.

I requested the manager come to our table and, blinking the tears from my eyes, I told him just how special this night was and how much I personally appreciated the attention of his employees, especially our waiter. On our waiter's next trip I explained to our waiter just how amazing our night was and thanked him for making it even more special.

To all the staff at Uno's on International Drive in Orlando - thank you. Thank you for entertaining the whims of an almost ten year old boy. Thank you for making his night unforgettable. Thank you for making my son laugh so hard that all the tables around us were giggling themselves. Thank you.

Best Kids Ever

Today I couldn't be prouder of my kiddos. They were so well-behaved, had such good manners and were so very brave. For Little Man, we have had way too many days lately of this:

terrible tummy pain, overwhelming nausea, sprints to the bathroom after each time eating, trying to make it before he vomits and his eating has dropped off to almost nothing. Please, please let these tests show why. I hate seeing my little guy, who never complains of pain, in such a state.

The kids were such troopers. Beans knows the routine all too well. See his look of "whatever, here we go again?" :PHe was quite happy when anesthesiology decided he could wait until he was asleep using the gas before they placed the IV this time. The IV is his biggest issue with any hospital stay/procedure. I'm quite glad they waited since it took them 3 sticks before they got one to stay.

Brothers waiting their turn

Beans scope went great, his insides look wonderful and as long as the biopsies come back clean - HE GETS TO START FOOD TRIALS!!!! OMG this is the best news he could have possibly gotten. He can't wait to be allowed to start trying foods. The process is painfully slow, one food at a time for weeks at a time, but he doesn't care - he'll get to eat!

Little Man went next, and because of his tummy troubles, he had to have the IV placed before he went back. He too was so brave. The first stick went right in...and then right back out. The nurse said his veins were so crooked in his hands that the IV wouldn't stay. I haven't heard of crooked veins before, but whatever. :p She did the second stick in his elbow and that one behaved itself and stayed in place. All this with no tears, not even a flinch from Mr. Braveness.

They took him back as soon as Beans was finished. Everything went well with him too. His esophagus looked surprisingly good, his stomach wrap is still in tact, though we won't know if it's actually functional until the impedence probe test is read. He woke up calm and oriented and such a good kid. He didn't try to pull the tube out once.
Now he's supposed to eat, drink and play like normal until tomorrow afternoon when they'll take it out. We should have the results next week sometime. Then we should know if he's looking at a repeat Nissen or if his tummy trouble is from something else.Here's the bravest kid ever with his probe in place and little black box on the strap. His constant companions until tomorrow and he's handling them so well.

WTG Kiddos!!! You did awesome!!

Back to Orlando

Here we are, back at our home away from home - the Ronald McDonald House in Orlando. We got really lucky this time as they called this morning saying they didn't have a room available, but the other one a few miles away did. Just as we pulled up - literally right in front of - the other RMH, I got another call that a room had just opened up at our regular RMH so we could choose which one we wanted. We chose our regular one. :D Right next door to the children's hospital we have to be at bright and early tomorrow morning. No traffic to deal with, no driving at all, just a walk next door. :)

The kids can't have any more food or formula tonight, clear liquids only. Little Man, who has hardly eaten the past few days since we had to stop his Prevacid in preparation for his tests, is now insisting he's starving of course. He wasn't at 7:30 or even 7:45 (cut off was 8:00, he started asking for food at 8:06, it's now 8:30) but now he's starving to death. Thankfully he should be out for the night soon.

The drive down here was nice and uneventful. It tried to rain a few times, but never enough to even use the wipers. Little Man and Beans have gotten to be pretty good travelers. I'm getting them nice and prepared for our looonnngggg drive when we move. ;)

Keeping my fingers crossed for tomorrow. Little Man has had time when he's woken from anesthesia really agitated in the past, so I'm a bit concerned about that, and he's at a higher risk for seizures with anesthesia, but these tests have to be done and they're really all routine so it's no big deal. Beans has had a million scopes so I'm not really worried about him, though he did break out in hives tonight for the fun of it. :p If anyone has a spare set of hands, and an extra body for that matter, I'm sure I can use it in the morning. I've never done the 2 kids having procedures at the same time before, but no big deal, right? :D

Good Game

You know you're the mom of a special soccer player when:

~ You hesitate to sign your kid up with typical kids because you're not sure he can pay attention, be accepted, or if he'll take a blow to his self-esteem.

~ You don't mention the "A" word (autism) until after several practices because you don't want him to be discriminated. When you finally do tell his (amazing) coach, he shrugs, he's already figured it out. He responds by telling you "whenever I tell him to do something he tries his hardest and says 'I'm giving it my all coach' and that's all I could ask for from any player." Did I mention his coach is great? ;)

~ You are thrilled when your child surprises you by running up and down the field with his teammates, even if he is the slowest one, because dang it, he's trying his best and he's SO HAPPY!

~ The first time he kicks the ball in the game you want to celebrate. Who cares that the ball barely moved and it went in a random direction. He kicked it!

~ You get incredibly excited when he hits a header - and meant to!

~ A player from another team knocks him (yay! He was with it enough to be knocked around!) and the coach tells him not to take that from her and Little Man responds with a big smile, "I didn't coach. I pushed her back."

~ After the game they were short handed and didn't have enough players for substitutions, when you tell him before it starts that this is it, he needs to suck it up and play hard. He is so excited to tell you that he "stuck it up! He stuck it up there far!"

~ The coach cheers him every time he goes after the ball, kicks it, or is really in there. (Yes, he has an awesome coach.)

~ Hearing his teammates yell "Nice one Little Man" "WTG Little Man" puts a smile on your face that can't be removed.

~ On the night that everything finally connects - he's with it, he's kicking it, he's playing defense, he takes a couple headers, the coach is cheering for him, his teammates are yelling his name, other parents are encouraging him - you fight to keep the tears in your eyes from being seen.

~ And most of all, you come to the end of the season and you realize HE DID IT! HE LOVED IT! HE HAD THE TIME OF HIS LIFE! His teammates accepted him for who he is, his self-esteem has climbed about a hundred notches and you wouldn't have traded any of it for the world.

Little Man, you're a rockstar!

The Good Part

Tonight I got to do my favorite part of being a mom to special needs kiddos - I got to help out two other families going through similar struggles. While the kids enjoyed themselves, I talked to one mom whose baby is having a g-tube placed tomorrow. Beans even showed her his button and helped her feel much better about her daughter's new attachment.

Shortly after we finished talking, another mom pulled me aside. She had overheard me talking about the boys' Nissens (stomach wraps for reflux). Her son is scheduled to have one in the next few days and she was feeling very apprehensive and scared about it. I was able to talk to her about Little Man's and Beans' recoveries.

Then I remembered I had a Farrell valve (vent bag) up in the room. I'd grabbed it last minute, not really sure why - just in case I suppose. I ran up and got it and showed her how it lets someone be tube fed while still letting them vent (burp). She's been unable to hold her son for 10 days because he currently has a syringe rigged across his crib. I gave her the bag and she's going to have the hospital get some for her son. Thanks to the knowledge and help others gave me, I'm hoping little D will be snuggled back in his parents' arms very soon.

To end out the night, the Sheraton Vistana provided dinner at the RMH and brought along FUN! A lady painted the kids' faces, the two below (Christina and Sally) did magic tricks and taught them to juggle. Christina just had an NG tube placed 3 days ago and is undergoing treatment for thyroid cancer and a benign growth in her head so Beans loved discussing how nasty nose tubes and PICC lines are with her. It was great fun. I'm so glad we decided to spend one more night here before heading home in the morning.

Making Progress

First the greatest news: Beans has grown 2 inches and gained 5 pounds in the last 9 months! WTG little guy! The GI and dietician were thrilled with it and the dietician gave me some information about avoiding heat illness since Beans definitely struggles with that. They increased his feeds from 300 to 330 ccs (10 to 11 oz) 6 times a day to keep up with his growth and activity level. Everyone is thrilled he's playing soccer and loving it! :D

The rest of the appointment could have been titled "to be continued..." As I was suspecting, both kids need to be scoped and Little Man needs an impedance probe. The GI tried to get them in tomorrow, but they're booked solid so we'll have to do a return trip in just under two weeks. Bright and early the 18th Beans will have his endoscopy - hoping for clean results so we get the okay to start a food trial! Immediately following Beans, Little Man will have his scope to check for damage to his esophagus, the status of his stomach wrap and hiatal hernia (repaired when he was 3), check for carbohydrate malabsorption issues, and check for the dreaded eosinophils. The doctor isn't too worried about EE (what Beans has), but we definitely have to check. While he's under for the scope, he'll also have an impedance probe placed down his nose and into his esophagus to check how much he's actually refluxing in a day. He had this test long ago, but he doesn't remember it and I'm sure not mentioning the nose tube thing until right before the procedure or he will freak out.

All of these tests on Little Man will tell us if he needs his stomach surgery repeated and/or if he has an eosinophilic disorder. We'll have to be here for two nights, but will be able to stay outpatient at the Ronald McDonald House.

Having two trips to Orlando so close together is quite a financial strain. If anyone has super fast fundraising ideas I would love to hear them. We don't need to raise too much, but we do need to pay for gas, food, and the fee to stay at RMH. We're trying to get things done as quickly as we can to have the kids as stable as we can for our move.

Just another couple weeks and maybe, hopefully, I can feed Beans again!

Hope in the Morning?

As we settle down for bed here in the Ronald McDonald House in Orlando, I can't help but have hope for the morning. When the kids see their GI will Beans finally be given the go ahead to start food trials - after nearly a year of NPO - nothing by mouth? Will the doctor or dietician have a good idea of how to get enough calories in him while still letting him be a normal little kid out playing?

And Little Man, will we find a way to ease his tummy troubles? The increased Prevacid has helped enough that he's started to eat again, but he's still bringing food up many times a day. It's hard to know when you're doing enough and when you need to do more when he can't let you in on what's going on inside that body of his very well.

So many questions, hopefully we'll have some answers tomorrow. This doctor has been really good about trying to schedule any tests Beans has needed while we're already in town so hopefully we can continue that trend as well, even if we need to hang out for the weekend.

The kids were great on the 5 hour drive down. We listened to almost all of Harry Potter and the Sorcerer's Stone on cd again. That sure helps the time fly. When we exited the turnpike my car tried to make a dash onto I-4 West on that last little jog to Sea World and Disney, but I was able to grudgingly convince it we had to take I-4 East towards downtown and the hospital. Beans desperately wants to go to Sea World for his birthday on the 23rd, but I just don't think I can pull it off. I hate being so close and still having to say no. Just one of those things though. :)

The kids are already sound asleep so I suppose I should follow. Hoping for good news tomorrow!

First Soccer Game of the Season!

The kids have been practicing very hard for the past two weeks and tonight was each of their first game. They got their jerseys tonight (both were happily surprised to see they got their favorite colors - light blue for Beans and red for Little Man).

Beans' game was first. The Timberwolves played hard. Beans even hit the ball with his head a couple times. This shot I actually caught just as he was about to hit it.


Tonight's game was against two girl(friends) that were in his class last year. It was pretty cute. I had to leave his game to take Little Man to his field just after halftime, but apparently Beans was the only kid on his team to score a goal! It didn't count due to having an extra player on the team :(, but who cares? He made a goal! I completely forgot about the much loved post-game snack ritual of youth soccer, but he was a trooper and didn't let it phase him.


Next on the schedule, the Winners played! (Yes, Little Man's team is the Winners :D) It was quite the game. The Beats took a lead early and were up 3-0 when the Winners came from behind and won 6-3!

Getting warmed up

I hadn't mentioned to Little Man's coach that he's autistic until tonight, but apparently he'd already figured out he was special. :P He had nothing but good to say about my sweetie. Coach Bobby told me he told his wife that he'd never had a player with such heart. "Every time I tell him to do something, he says I'm giving it everything Coach." None of us could ask for more.

Being in self-contained classes, and now homeschooled, I haven't seen him with neurotypical peers in a long time. Tonight's excitement made the difference starkly obvious. Little Man was full of jumping happiness. :) He gave it his all though, I only had to remind him one time to look at the ball, not the ground. When he wasn't playing he was right next to the coach, echoing his directions to the team.
What a great night....now we do it all again tomorrow. :D