She passed the 2's!!!

I'm so proud of K!  Halfway through 8th grade, today she passed off her twos time tables!  She's been working on them for ages and we're so proud she made it today!  For more good news she has had FOUR perfect days at school this week, one more day will make it a completely perfect week (completed all her work, good attitude type things).  I'm one proud mama today. :D

Beans and the Allergist

A couple weeks ago Beans had the much awaited allergist visit.  He got some good news - most of his food allergies are not the IgE type, meaning not the anaphylactic type.  He still has the latex and bee/wasp anaphylaxis to be tested further later.

In the meantime he has no additional dietary restrictions from this appointment, but the allergist wasn't confident enough to give new foods either.  Patch testing may be set up sometime in the summer.  He said that some GIs trust them and other GIs don't so he'll put Beans through it if she wants it, but not unnecessarily which I appreciate.

Unfortunately, despite the massive amount of calories he's consuming between orally eating and his 6 tube feeds, weight gain still eludes him.  I'm not sure what we need to do to get back to that steadily gaining kid again.  May's GI visit and scope may give us more answers.

Sad Heart

Today I came home from a very difficult doctor's appointment for me and saw laying on the table K's homework.  For some reason it just broke my heart.  She's 13 and in 8th grade.  Her homework? A page of dividing by 2's and her spelling words:

• made
• song
• line
• drive
• awake
• hook
• shape
• cross
• heart
• vote

Usually I'm a really positive, go with the flow type, but tonight I'm taking my right to be sad.  After her EEG showed some kind of slowing that starts with a d and the rest of the results to be discussed at her next neurology appointment, I'm already sensitive in this area.  

What kind of real future does a child who is soooo far behind really have?  Will she ever actually catch up?  Will she make her own work arounds for so many things she doesn't grasp?  It's not for me to know now.  For now my job is to love and encourage and be proud of this amazing little girl I have.

Tonight's homework

Me: Spell heart

Her: hr...no...ha...no...hae...no...hrt...no...heat...no...heart!

Yes baby, heart.  Mommy's heart is sad tonight but tomorrow's a new day and we'll get there.

...And its Back to Full Tube Feeds

Both the kid saw their GI doctor today.  One was quick - K.  Still having her bad constipation issues, but found out we were doing her Miralax wrong.  Her favorite way to have it was in chocolate milk...and it doesn't work well in milk.  So now we'll be giving it in orange juice or gatorade and hope it cooperates better.

Then there was Beans.  We knew there was a problem from the first.  Weigh in showed him down 2 pounds since last time - 2 months ago.  This was with him eating 2 meals a day plus snacks, tubing 3+ feeds a day and drinking 3+ feeds a day.  Not what we expected at all.

This has happened every time in his life where we try to go to more oral eating.  Theoretically, calories are calories regardless of the type of food or the route (tube or oral) they come from.  Reality with Blade shows us this isn't the case for some reason.  This could be because his eosinophilic esophagitis is flaring due to something he's eating or the formula he's receiving, or because for some reason the oral calories are either being burned faster or not being absorbed.  Time will tell.

This leads us to our current plan.  Beans will be receiving 6 tube feeds a day of 8 oz each of his PediaSmart formula.  Anything he take by mouth - drinking his formula, eating a snack - anything will be extra calories.  Follow up in 2 months and hopefully see weight gain then.  Regardless he'll be having another endoscopy to check the state of things.  We're also trying to get him in to see an allergist in the meantime.  He has a few signs (a rash on his face, a cough that won't go away, etc) that something he's eating isn't agreeing with him and we haven't been able to figure it out.

At least he hasn't lost his food.  That's his biggest fear.  We'll see where all this goes but cross your fingers that he can gain weight and that the doctor doesn't have to take his foods away when she gets all the results over the next few months.

Tracking the Brain

To finally answer the questions "Is K still having seizures?" and "Are the seizures contributing to her other issues (learning, mood regulation, sleep)?" she had a 24 hour continuous EEG last night at CCMC.  She wasn't concerned at first and cooperated perfectly while getting all the electrodes glued to her head.

Robo-K...or Alien K as Beans preferred

 She even did well having a huge rope of wires connected to her head.  When bedtime rolled around, and we realized I forgot her teddy bear, her head was itching, and reality set in that she wasn't sleeping in her own bed she had some tears.  A snuggle session with mom and a rescue stuffed elephant by her nurse calmed her and she fell asleep easily.

She had to stay in bed for the full 24 hours as they have a camera on her to catch any signs of seizures and to correlate what they see on the EEG with what her body shows.  Thank goodness for Child Life - the entertainment, distraction and teaching experts at any good children's hospital.  They brought her art projects to do and, her favorite, a Wii to play.  She was quite happy to stomp on me in several games of tennis. :D

I'm not sure what the test showed - we'll get the results next week - all I know is the computer tracking her brain waves showed tons of 'events' and many times that of 'spikes.'  They had me bring homework for her to do so we can see what happens when she's doing school work.  Again, I don't know the results, but when she dropped her book and most of the times she lost her place when reading (happens super often with her and one of the big reasons her reading is so far behind) the EEG showed a ton of activity.  Does that mean anything?  I don't know, but I'm very interested to get these results.

Yup, It's Winter

This week has been hard on the little ones.  Beans started it off with a massive cough and high fever.  He finally kicked it with loads of albuterol and pulmicort breathing treatments and ibuprofen and tylenol kept the fever down to 101 for about 3 days.  Just get him ready to go back to school Tuesday and K starts with the cough.

K has been up both the last 2 nights coughing non stop with her fever shooting up past 104 while on meds.  Last night enough was enough and I took her to the ER.  The doctor thought her lungs sounded rough, but not too bad, but thought it would be good to rule out anything serious with an x-ray.  Well, as our family is now quite well at doing, we surprised the doctor with her having pneumonia.  Luckily the ER was absolutely empty at 4 am so we were in and out in an hour.  She now has antibiotics, cough medicine and continuing her albuterol breathing treatments.  No school until Monday.

Here's hoping I can keep from getting it.  Massive coughing would be torture with my headaches, that's for sure.

Almost Christmas Already???

First things first, our family had the most amazing Thanksgiving.  Beans being able to eat made it one of the happiest days ever.  And yes, the pumpkin pie was his favorite food.  He's got a bit of an obsession now.

The dietician at his GI office was able to find a more palatable dairy based formula without corn syrup in it (corn makes him very sick - and it's the top ingredient in Pediasure).  It's called Nature's One Pedia Smart and it comes in both chocolate and vanilla.  He likes both, but prefers the chocolate. We're still in the early days, making sure he tolerates it okay but so far so good. He's inching closer to getting his feeding tube out one day.  He still gets at least 3 tube feeds a day, but that's half of what he used to get!

As for K, she's doing pretty well at the new school.  Currently she's tackling her 2 xs tables and working hard on them.  The new school is much better adapted to what she needs and she's doing much better.

Healthwise, we're back to sorting things out again.  She's had some increased obvious seizures as well as other signs that she may have some seizures we can't see.  Before increasing her meds, her neurologist has ordered a 24 hour inpatient EEG so we can hopefully get a better idea of what's going on inside that head of hers.

Of course I can't leave off the fun stuff.  A few days ago the kids and I made a gingerbread village.  They each got to decorate two houses that now decorate our dining table.  Next week Beans has a holiday concert I'm looking forward too.  I hate being crowded into the auditoriums with all those people, but I love seeing him up on stage so I can't wait.

Wishing everyone a happy holiday from all of us.

HUGE Day for Beans!!!!

Beans GI just called.  He has passed almost all foods!  His eosinophilic esophagitis is in remission!  He now has all foods allowed except corn, soy, chicken, fish, watermelon and nuts!!!!  His biopsies came back clean with the exception of showing a little reflux!  The GI was going to put him on Pediasure by tube and mouth, but the second ingredient is corn.  The nutritionist will be calling soon with our new formula options.  Even though he has so many options, and eats so much, the kid can't gain weight without the tube feeds so we'll see what they recommend.  I love being able to feed my son and he loves it even more!

Another Month, Another Scope

Beans was totally not thrilled at the prospect of yet another scope.  At my best count he's had probably somewhere in the neighborhood of 40 scopes in his lifetime. At this point it's not the scope itself he's afraid of, but he's not a big fan of ivs and he's terrified he'll lose another food.  This time went much easier.  For starters he got a pre-op room with a tv and spent his time watching his favorite shows instead of being anxious of what was about to happen.

Then he got changed and was burrito'd in a nice warm blanket.  Always a good thing.  Notice his eyes are still focused on his show.  Lol.

This time his GI decided to use a different kind of anesthesia.  Normally his IV is started in pre-op, he gets emla numbing cream and versed to help take the edge off and help with anxiety and then is given propofol in the scope room for anesthesia.  He's anxious the whole time and wakes really upset.  This time the GI decided to use a different kind of anesthesia.  No IV beforehand, laughing gas then gas anesthesia and the IV was placed after he was asleep.  No anxiety, no pain, and I got to stay until he was completely asleep.

When he started to wake up, and after he was extubated, they called me right back, so he never even knew of a time I wasn't with him.  His heartrate also stayed in the 60's instead of dipping into the low 40's.  He didn't need any oxygen after he woke up like he normally does either.  So soon as he was awake (which came quickly) he got to sip an icee.  He held it down so the IV came right out.  No prolonged monitoring needing.  I think I like this other way of doing scopes just as much as he does.

The initial verdict is that his esophagus and stomach look great.  We have to wait for the biopsies to come back next week for the final report.  Then the GI will call with the next step.

Apparently Beans has a very recognizable name.  Two child life specialists and a few nurses saw his name in the pre-op area and stopped by to say hi.  This was his initial response:

he chilled out each time and would finally say hi and talk to them.

Here's hoping the biopsies come back with 0 eos and we get to start on the next step of his treatment.

A New Start and a New Concern

The view out our door.  Beautiful.

With Halloween just around the corner things are transitioning here at home too.  In the morning K starts her new school.  We went Tuesday for the intake and to let her meet her new teachers.  This new school looks to be much more fitting to her needs.  I almost feel guilty for fighting it at the beginning of the year.  Hopefully this new start is just what she needs to go back to that happy, successful, learning child I had last year.

I talked to her teacher from last year and found out they have a picture of K up on the wall.  Her teacher was amazing and so special.  She has told me several times how special K is and how much she helped her become a better teacher - and the feeling is the same here.  Ms. G helped K become a better student, and a better person.  I know we can't go back to that right now, but if we can even get someone who understands K and is willing to work with her - which it seems the chances with this new school are much better - then we'll be back in a good setting.

Ready for her big day tomorrow, K fell asleep sitting up with her notepad and pen in hand. <3 p="p">

As for the little guy - Beans - we have a new concern on our hands.  A couple weeks ago I noticed a lump on his collarbone.  It was tiny but definitely there.  I had the school nurse look at it and she said if it didn't get better in a couple weeks to take him to the pediatrician.  Not only did it not get better, it doubled in size in that time.  It's still tiny, but not as small as it was.

Today we went to see what the doctor had to say.  She saw it right off, it's rather prominent as it sticks right out from the bone.  She wasn't sure whether to order an x-ray or ultrasound so she went and called someone to consult.  They told her that since it's so small we can wait two more weeks.  If it doesn't get bigger it's just a strange Beans thing but no big deal.  If it grows at all then we have to pursue more testing.  For now its called a bone mass.  Obviously we're hoping for no growth.

Tonight Beans sleeps soundly, unaware of what a mass can mean, and I hope for the best - for no growth.

And Grief Turns to Action

This post will have to be rather sketchy on the details due to all that's happened, but let's just say suddenly I'm extremely happy K will be changing schools.  On Tuesday after the PPT meeting, she was very upset when I went to leave.  Crying hysterically and grabbing for me.  It broke my heart to walk out the door and leave her at school, but I knew she needed to be there.

A note home that afternoon let me know the extent of her upset.  The two hours after I left were spent with K in tears and unable to calm down.  Instead of helping her in the autism classroom as was the point of the autism program as I understood it she was taken down to ISS (in school suspension).

I can't share what happened next but by the time she came home she was bruised on both elbows, a handprint on her forearm, a bruise on her stomach and bruises on the back of both knees from being shoved down on a bench.  Let's not forget the terror she now has about being arrested for crying thanks to comments made by the staff.

Today I went through the steps of our end of the investigation and the proper authorities are doing their part.  Instead of grieving her failure at this school I could not be happier to get her out of there and into the other one.  I can only hope she has a better experience there and that we can start making up some of the regression and fear that has been instilled.  Bruises fade fast, fear not so much. :(

Grieving

Something I learned in therapy over the past few months is that having a special needs child is like a grieving roller coaster.  Sometimes you have an up and are celebrating a milestone.  For instance, a couple weeks ago we celebrated K's (formerly Little Man) 13th birthday.  She had an amazing party with the most beautiful cake from an organization called Icing Smiles.  She's very much into the My Little Pony: Friendship is Magic series and her amazing baker made her a Princess Cadence wedding cake from her FAVORITE scene in the whole series. 

We had a beautiful party with My Little Pony decorations, a Pinky Pie pinata, and a game.  Her cousins came from eastern Connecticut, our family friend P came and Grandma D was here too.  Her day couldn't have been happier.

That was the high.

Not ten days after and we're at the crushing low.  This year I fought very hard for K to be in an autism program at the new school.  She's been in full time self-contained (full time special ed) classes for basically her entire school career, with the exception of 2 weeks in third grade that were a terrible mistake.  The new school district doesn't "do" self-contained so her therapists, former teachers and I thought the autism program with assisted inclusion (an aide with her and a few other autistic kids in the regular class) would be the closest thing to a best choice available.

Clearly this was a big mistake.  I'll spare you most of the details, but K cannot handle the constant transitions of changing classes, she cannot handle the noise and stimulation of the large class sizes, and she cannot handle not having a "home base" to go to to be able to calm down.  Things we were assured would not be problems when agreeing to the placement.

One month into school and sweet K has to make another big transition - we have agreed it's in her best interest to change to another school.  This new one will better meet her needs, but it is proof again that she cannot handle any sort of inclusion classroom and needs the full support of self-contained. I know it may seem silly to be grieving another failed placement when we knew this was a chance we were taking, but it breaks my heart to see this fail in 8th grade.  She only has a few short years left of school.  She isn't going to catch up to her peers.  There's yet more accepting to do.  It is sad.  It's heartbreaking.  Yes, this too we'll get over and find more things to be positive about, but at the same time this deserves it's time and place to grieve over.

K should start at the new school within a few days.  I hope she can find the support she needs.  I love her so much and just want to see her happy and thriving like last year.  I hope this is the next place she'll find it, and if not, we'll search for the next home base.  Through it all though I've learned it's okay to grieve, it's healthy even, and things will get better and we will celebrate.  That is life with a special child and I love mine so much. <3 br="br">

Oops...over a year?!?

I can't believe it's been over a year since I updated the blog.  So much has happened in all that time.  Let's see if I can do a run down.
    November 2011 - Little Man had another scary seizure that may have been a mini stroke.  Another ambulance ride.  Another scare.  In the ER they had a hard time waking him up, but eventually he was able to answer questions so we got to go home.  I'm very happy to say that's been the last seizure he's had.  He's on a couple meds that control them, but whatever.  Let's just keep those seizures away.
   November and December were also full of medical tests and appointments for Little Man mostly that kept us busy.  MRIs, blood work, upper and lower scopes, I can't remember it all.  School was good dealing with all the days missed for appointments.
   Early 2012 gave us the news that Beans passed his first food! He really wanted to try cheese (dairy) but was so afraid he'd fail it that it took days and a lot of convincing for him to even take his first bite.  When he finally was scoped and biopsies were taken, the big news came that he PASSED.  I had perhaps the happiest kid anywhere.  Since then he's added wheat and is currently trialing eggs.  He'll have another scope again soon, I'm guessing November, to see how those eosinophils are doing.
  The first real birthday cake in years was amazing!
  I think this is the first time ever that Little Man's been more complicated than Beans. 

 Last day of school pics for both :)  First is Blade (3rd from the left) and 3 of his friends.  Next is Koty, red-eyed from crying, and his teacher, Griff, who we'll both dearly miss.

  

  We're in the middle of another run of appointments for Little Man.  Pediatrician for what was supposed to be shots, but turned out to be a chest cold with a surprise gift of a new nebulizer for each kid since ours died the night before.  Neurology is doing 6 month follow ups but as long as the seizures stay in line we're just following along there.  The essential tremor is still there, severe as ever but we're not adding an additional medication to treat it right now.  Psychiatry's biggest concern right now is getting him to sleep.  That may sound trivial, but without sleep everything else goes down hill.  Urology is in a few days to follow up on things in that department.  Today was supposed to be an appointment with orthotics but they rescheduled for the 12th.  Little Man definitely needs things changed with his AFOs.  He's able to twist his ankles in his current ones and is having pretty much daily knee and hip pain.  So we'll get that figured out in a couple weeks.  In October both kids see GI and we'll see where we go with their issues from there.

   I can't believe we're just over a month from Little Man's 13th birthday!!!  I think he's going to want a My Little Pony theme, but we'll see.
 
 Thanks for checking in on the kids again.  I will try to get better at updating the blog again.

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.