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.