The Amazing Jacob List

It’s been almost exactly a year since Jacob was diagnosed with epilepsy.  So much has happened in the last year, but this post isn’t about all of that.

We had his third EEG a few weeks ago, but this post isn’t about that, either.

Forgive me as I muddle through some pretty intense emotions and figure out what this post is about.

The situation I have on my heart right now is that Jacob is having trouble.

Trouble at school.

Trouble at church.

Trouble at gymnastics.

Trouble anyplace where I leave him on his own to navigate the world.

He’s six years old.  He should be able to play nicely, be polite, do his work, and yes, maybe get frustrated when things don’t go his way.  Most 36 year olds are still working on doing well at that list of things.  But, he should be doing at least okay with most of the things on that list.

But, for some reason, he just isn’t doing well.  Every time I pick him up from school, I get one of the following statements:

“Jacob had a hard time today.”

“Jacob couldn’t keep his hands to himself.”

“Jacob wasn’t kind to his friends.”

“Jacob couldn’t stay on task.”

“Jacob is causing problems in the classroom.”

“Jacob spent a lot of the day whining.”

Maybe once or twice a month, I will get a positive report.

Nothing has changed.  Nothing has changed at home.  Nothing has changed in his diet, in his health (that we know of), in his sleep patterns, in his medication, in his life.  Seriously.  Nothing.  There is nothing concrete that can explain what is happening right now.

Of course, with epilepsy, there is the chance that he has other learning disorders, which we are in the process of testing him for and maybe one of those things will pop up and will be the answer.

But, in the meantime, I’m struggling.

I feel lost.

I feel tired.

I feel frustrated and worried.

I want to fix this for him.

I want to help him.

I want to understand why he has such a hard time.

I feel helpless.

I feel powerless.

I am sick of not hearing good things about my little boy.

I get it.  His teachers don’t have time to do anything but address the problems.  But, it does hurt and it is hard to be constantly faced with the things that Jacob is doing wrong.

He is not a bad boy.   He is not a mean boy.   He is not unkind.

I know these things.  I worry that others don’t know these things or that Jacob might forget that he is not those things.

Jacob is so much more than epilepsy or ADHD or whatever else is going on inside of his little brain.

I don’t want him to feel as lost in it as I feel right now.

I’m sitting at my dining room table, writing and crying and praying for my little boy, and I’m strongly reminded that I don’t belong in the Normal Group.  Like it or not, I’m not like most mothers.  I don’t get to drop off Jacob in the morning and assume that I will pick up a smiling, happy boy who has basically done the right thing at school.  I don’t get to go to  church and not wait for the tap on my arm.  I don’t get to go to gymnastics and read a book.  I have to watch every move so that I can understand why he might be asked to leave this time.  I have a child with Special Needs, so I don’t get to be like all the other mothers.  I carry an extra burden and I have to try extra hard, all the time.

I am tired and discouraged and so freaking sick of all of this.

But, I know I don’t get to be these things all the time either.

If I can expect more out of my boy, than I have to expect more out of myself.  I can’t let my brain get to such a dark place.

I have to keep praying (and crying, if necessary.)

I have to keep encouraging him.

I have to keep being compassionate.

I have to keep defending and helping.

I have to remain patient.

I have to be diligent to care for myself so that I can care for him.

I do not see signs of this getting better or the proverbial light at the end of the tunnel.  I have to remain hopeful that “better” is out there and that the end of the tunnel will come.

I think maybe the best thing I can do for myself is to write down five things that Jacob does well or wonderful things about him.  I need to do this every day.  Part of this might just be that I need to re-train my brain to know what it knows even when I don’t hear it from other people.

Here is today’s Amazing Jacob list:

  1.  Jacob is amazing at walking like C3PO.  It’s very funny and wildly accurate.
  2. Jacob is compassionate when I am hurting.
  3. Jacob has the most infectious little laugh and smile.
  4. Jacob has a sweet little heart and I see it every night when we pray for a different friend.
  5. Jacob is amazingly stubborn, which will eventually turn into perseverance and will allow him to accomplish so many great things.

Whew.  That helped.   A lot, actually.

What will also help is if I go clean the kitchen.  And, probably, throw away the remaining Halloween candy that I can’t stop eating.

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Surgery #11: I Don’t Feel Terrible Anymore!

A few days ago, I was talking to a friend of mine at church.  She had seen a funny post about Jake on Facebook and told me that I really should have a blog.  After talking to her,  I made a “merp” sound and decided that I should start writing again.

Writing takes work and energy and brain cells and at least a few hours of a distraction free life.  Since my health has slowly been tanking for the last five years, I haven’t had any of those things in abundance and writing was one of those things that I loved that just slowly fell away from me.

So much has happened since my hysterectomy in May that I will do a series of blogs about what it feels like to come out of the fog of bad health.  I’ll limit this entry to filling you in on what’s happened since I gave my uterus the eviction notice.

For the backstory, read this:  https://sistertwo.wordpress.com/2015/03/16/surgery-11-or-for-girlz-only/

Surgery 11 happened bright and early in the morning and at that hour, with no food or coffee, I am not a happy woman.  I would love to say that the day got lots better, but it didn’t.  I had an anesthesiologist who said the polite version of “I’m smarter than you” to me after I gave him the rundown of how I usually react to anesthesia.  Which is bad.  This operating room was the only one that kind of frightened me since they used the same robot to do the surgery on me that they used to put people into The Matrix.  Well, not really, but it was scary.  My anesthesiologist knocked me out without talking to me, so I wasn’t prepared to go to sleep, which makes the being under part very weird.  Waking up was no picnic.  Since he overmedicated me, I wasn’t conscious enough to talk to the part of my brain that deals with pain and tell it to stop freaking out.  They put a very heavy ice pack on my stomach and I wasn’t awake enough to realize how much that was hurting me.  I left the hospital much later than we thought I would need to since my body wasn’t functioning I truly didn’t feel ready to go, but the alternative was staying there.  So, I decided to hold my head up on my wobbly neck, thank the Lord that my arms still weren’t working so I couldn’t strangle the guy who wheeled me out of the hospital, and Greg scooped me up and put me to bed with lots of things to make me happy.

The next day, my dearest friend Ruth came to stay with us.  We watched a bunch of movies and she listened to my ramblings and how I was sure I had a theological break through that the entire world needed to hear and helped me get through the countdown and deep breathing until I could take another pain pill.  It turns out, when they cut a hole in your stomach and take things out through the hole, it hurts!

I have the pictures of what they saw, took out, and had to leave behind and they were bizarre.  I won’t put them here, but I have them, so if you want to see what a really unhealthy uterus looks like, let me know.  (That is such a weird sentence to be able to write.)

I forced myself to do all the things I was supposed to do after surgery and my recovery came along a lot faster than I thought it would.

The fog of surgery began to lift at about five weeks and about another two weeks after that, I realized that my body was feeling things it hadn’t felt in years.  I have energy again.  I am sleeping through the night again.  I wake up in the morning and don’t feel like I haven’t slept.  My brain is starting to function again.  I can think more clearly and solutions to problems that would have thrown me for a loop before are coming easily again.

I was talking to one of my post-op nurses about how bad I felt before my surgery and she said, “Wow!  You probably have no idea who you are without all that making you feel so terrible.”

She hit the nail on the head with that statement.  I really don’t know exactly who I am without that draggy, tired, hauling around an evil uterus, sort of feeling.

I’m really, really, really excited to find out.

For now, I am glad to be doing less of curling up in bed with the dogs like this:

blog 1

And doing more stuff like this:

DSC_2010 DSCN5245 IMG_3986

Coming Soon:  “My Uterus Was a Hoarder”

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Surgery 11: See Ya, Sucker

When I had my first surgery for breast cancer, my surgeon told me that it was an important part of the healing process to grieve for the body parts I was about to lose.  It felt weird, but taking a minute to say “goodbye” ended up being really healthy.

On May 15th, I will undergo my 11th surgery and will say goodbye to my uterus and surrounding parts.  Keeping in mind what my original surgeon told me, here is my goodbye to the parts I will lose on Friday.

Dear Uterus,

We’ve been together for 38 years.  We’ve had some ups and downs.  As I’ve grown and matured, I’ve realized that we are growing apart.  We just want different things.

You keep trying to kill me.  I would very much like to keep on living.

You have decided that spending 25 days a month in pain is a your definition of fun.  My definition of fun is a little different.

You love being a drama queen.  I would like a little less drama in my life.

You would like me to single-handedly support the “female products” companies. I’d like to focus on giving money to Ben and Jerry’s.

You love meeting doctors, nurses, and various fascinated medical students.  I’d like to have fewer of those people in my life.

You think that pain is a wonderful thing.  I think it’s dumb.

You think that making me crave cows and not caring too much about what form they take is super funny.  You might be right about that one.

You think that forcing me to carry an enormous purse full of pads, “just in case”,  is hilarious.  I’d like to just carry my wallet and keys for a while.

You love the fetal position.  I love to go running.

You enjoy making me crave potato chips, chocolate, and soda.  I like those things too, but not the feeling of wanting to kill anyone who stands between me and those things.

I’m sure you can see that I just don’t feel the same way about you anymore.  Our relationship has been causing me to be sad and tired.  I think it’s best that we go our separate ways.

In short, life as you know it is about to end.

Up yours,

Mary

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E is for Epilepsy: Good News, Less Good News, and Adjustments

A few weeks ago, we saw Jake’s neurologist for test results from his latest EEG.  Because I didn’t post about the EEG and since Jake is super cute, I’ll walk you through the EEG first.

First, I’ll remind you of where we are or introduce you to our story.  If you want the long version of any of this, our whole journey is on this blog under “E is for Epilepsy”.  Jake was diagnosed with epilepsy in December and has responded amazingly well to his medication.  The mood swings, the anger, the frustration, the inability to sit still, the headaches, and the seizures have all diminished greatly.  Until an EEG shows that there are no seizures, we have to keep doing them and adjusting medication.  The EEGs are all sleep-deprived tests, so we all get to stay up very late and get up very early.

We had Jake’s second EEG in March.  Since we already knew the drill, I felt like I was okay to manage the day on my own.  Greg stayed up with Jake until 11 p.m. while I took a sleeping pill at 9:30 p.m., and set three alarms for 3:30 a.m.  I woke up, got Jake up, and kept him awake with a minimum of fuss.

Jake loves to dress up for doctor’s visits, usually in his medical scrubs, but this time, he wanted to wear his Superman cape.  Jake is a very cute kid, but with the addition of the scrubs or the cape, he melts everyone we meet.

This is my little superhero on our way in to the hospital:

EEGblog2

Jake did a minimum of hopping, jumping, and generally being nuts in the waiting room before we got called back and began the process of getting him hooked up to the machines.

This is not a comfortable process and unfortunately, Jake had a rough time with it.   The tech has to scrub his scalp, face, and chest with a gritty paste to make sure his skin was completely clean for an accurate read.  He hated this part and I ended up getting up on the bed and singing to him while he got hooked up.

EEGblog

Once he was hooked up, the hard part was over and except for having to blow as hard as he could on a pinwheel for 5 minutes straight, he thought the rest of the test, especially the flashing light part, was really funny.

EEGblog5

After this part, he and I got to curl up and take a nap while they read his brain waves.

He slept for about 20 minutes and the test was done!

EEGblog4

On the way out, we had to stop and do a pose in front of the Neurology door, which has moon and stars on it.  If you don’t know my history with sun, moon, and stars, it’s here: https://sistertwo.wordpress.com/2011/11/22/sun-moon-and-stars-the-tattoo-story/

And here’s Super Jake!

EEGblog1

To keep me awake and capable of driving and functioning, I needed a lot of coffee.  I overestimated how much I needed and when we got home, Jake took a nap while I buzzed and hoped my heart would eventually stop racing.

We all recovered just fine and then began waiting for the results, which we got last week.

The test results had both good news and less great news, since I’m refusing to call it bad news.  The good news is that JAKE IS OFFICIALLY SEIZURE FREE!

The other news was a little more discouraging.  The EEG still showed spikes in his brain activity.  Those spikes, without medication, would have become seizures.  A seizure happens when a spike lasts for 10 or more seconds.  He still has spikes, but they are only 2-3 seconds, so they are not considered seizures.  He shouldn’t be having any spikes at all, so we are adjusting his medication by 2 ml a day and will do another round of blood work and another EEG as soon as the blood levels show the right amount of medication in his system.  I was really hoping for no spikes at all, but I’m okay with this process taking a little longer than I thought.

When we first saw our neurologist, she diagnosed Jake with Epilepsy with Absence Seizures.  Absence seizures, formerly called petit mal seizures,  are the kind of seizure that cause symptoms to just spacing out, except the person is not aware of what is happening.   Imagine losing 10 or more seconds, several times a day, and how that would feel!  If you are alone, it wouldn’t be as obvious, but imagine being five years old and in a Kindergarten class and how disorienting it would be if every 20-30 minutes your classmates had suddenly moved, your teacher was talking about something different than you thought, and someone was probably upset with you for not paying attention.  Pretty much, it stinks.

Upon reviewing Jake’s case a little more carefully, our doctor identified the seizure Jake had in October, the scary one, as a grand mal seizure.  Even though he didn’t shake, his muscles still tensed and released, he lost control of his body, he couldn’t speak, and he was unconscious for about 3 minutes.  With both grand mal and petit mal/absence seizures occurring, Jake has now been diagnosed with Generalized Epilepsy, which is a little more serious than Epilepsy with only absence seizures.

Since he has had more than one kind of seizure, the likelihood of Jake’s epilepsy progressing is slightly greater than we thought.  Thankfully, since the seizures are under control, we are hoping that the medication will take care of the epilepsy completely.  I was finally able to summarize all of this in a way that our doctor was happy with, which is that we don’t need to worry about the seizures, but we do need to be very watchful and I need to record any strange behavior and be careful to report it to her at our next visit.

As always, all of this is just one part of our life, but a big part.  I will be having a hysterectomy next week and while I recover, I will be trying to read as much of this book as I can:

epilepsy101

I’m hoping it will help me understand all of this a little better, get me familiar with the new language I need to be fluent in, and aid me in being the best advocate for Jake.

We are so thankful for the doctors, nurses, techs, friends (especially Heidi and Kara Sexton!),  and our family who have supported us in our journey so far.  Jake especially loves our neurologist, Dr. Chitniss.  He insists on dressing in his scrubs to go see her and she always calls him “Dr. Jacob” and asks how his patients are doing and what surgeries he has performed lately.  This time around she asked him if he could listen to her heart and I managed to catch this sweet moment:

DrC

We love you all and thank you, as always, for the continued prayers and support.  We are thankful to have people who cheer us on in our journey.

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Surgery #11 or “For Girlz Only”

Six months ago, I was really unhappy that I had to go through surgery #10 to remove a cyst from my foot.  Believe me, after the surgery I was done, I was really happy and not in an “I just had a whole lot of fun drugs” happy.  My pain levels went down dramatically, although the recovery was harder than I imagined.

So, here I am, six months and two days later, writing a post about another surgery.  (I swear, I’m not a surgery addict.)

On May 15th, I’ll be going under the knife, or in this case, under the robot, to do a hysterectomy and fallopian tube removal.

Before you freak out, let me explain.  Yes, I’m only 38 and although it’s technically possible for me to have another baby, the likelihood is up there with me shooting myself into space as a part of the Mars One Project.  I would like to have another kid, but I found out that as much as I loved Jake as a baby (and Jake, if you find this someday, I really, really loved you as a baby), I am not anxious to start staying up all night again.   I want more kids, but I’m just going to start putting “A Two Year Old” on my Christmas List and see what happens.  So, my uterus isn’t going to be doing any more producing.

Except producing everything it isn’t supposed to.  A recent ultrasound showed, and I’m not exaggerating, a uterus half full of polyps, a fibroid tumor, several ovarian cysts, and endometriosis spread throughout the rest of the parts.  You can imagine how lovely all that feels every month.  I’ve started having really bad symptoms.  Like, really bad.  No, seriously.  It’s terrible.  And, that’s all I’m going to say about that.

I will say that since I live with chronic pain anyways, I’m not anxious to spend two weeks out of every month either curled up in bed, or trying to walk around and wishing my heating pad was battery operated, or just being so stinking tired from lack of iron.  If I can eliminate even part of my terrible symptoms every months, then maybe, just maybe, I can start to be functional.

Functional is my goal.  Not fantastic.  Not marathon running or developing a newfound love of clogging.  Who knows how I will feel after this source of pain is elminated.  Maybe I  will start clogging.

I don’t like this part, but I am sad about only one kid.  Jake is so fantastic, that I can’t help but wonder what a few more like him would be like.  Then, I remember how active he is and I need to put on another coat of deodorant to deal with the hot sweats over the thought of more than one child like that!  Of course I wanted a big family.  I never thought one kid would be it.  The way I’m looking at it is that I am going to eliminate a huge health factor and if I got to pick one kid in the universe, how could I not be happy with the one I got?

Which is this kid, by the way:

funny Jake

May 15th is the date, which will ironically be one day shy of the 13th anniversary of my first breast cancer surgery and my official Cancer Free Day.  I’ll be doing a robotic assisted hysterectomy, which, when I heard of a robot, I immediately thought of this:

wall-e

Apparently, it’s more like this:

hysterectomy robot

So, if I wake up with no uterus, but also in the Matrix, promise me that you’ll come find me.

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Faces on the Long Road

I’ve often referred to the role I play in Jake’s special needs and health problems as “Mama Bear”.  I’m cute and fluffy and I like sweet things, but when I need to, I can stand up and roar really loudly until Jake gets the help he needs.

There is one issue on our journey though processing problems and epilepsy that can turn Mama Bear into Mama Dragon and this is when people are mean to my son.

This first year in public school has been difficult for both Jake and myself.  It’s been hard almost from the first day of school.  Jake is different.  I am different.  He has special needs.  I choose not to dress like a model or purchase coordinating workout clothes.  Jake has problems controlling his body when he gets upset and I have trouble caring about women who wouldn’t want to speak to me because the stripe on my jogging suit doesn’t match my running shoes.

From the beginning of the school year, I have been determined to be kind and gracious to the moms no matter what.  It doesn’t mean I won’t be direct or honest, but I won’t be mean or yell when I talk to them.  Jake, at five years old, with a brain that functions so differently and with a body that doesn’t always work the right way, has had trouble with yelling and pushing people when he gets upset.

Let me be really clear about something before I go any further.  In no way do I diminish the role of Jake’s behavior in the problems we are having.  In no way does he get away with being unkind to his friends.  I am on him when I see him do something he shouldn’t.  Even though he doesn’t always act the way he should, at least we know why!  I feel like the other kids don’t have the reasons he has.  Yes, the other kids are young.  They are immature.  They don’t really understand why Jake does what he does.  But, that doesn’t give them the excuse or right to be horrible to him.   Bumping into him on purpose just to see him melt down is awful.  Throwing things at him and laughing when he doesn’t understand what hit him is mean.  Pushing him so that he bumps into someone else really sucks.  Blaming him for their bad behavior is even worse.

Last night, Jake told Greg and I that “girls are friends and boys are kids”.  When we dug a little deeper, he said that boys are not friends because they are mean to him.  We talked that through and reminded him that he needed to be kind no matter what.

Later in the evening, though, the tears started to pour out of my face.  I realized that this is just the beginning of what is going to be a very long road for him.  Until he gets himself figured out, his body figured out, his maturity catches up with him, and we get the epilepsy totally under control, he is going to struggle and people aren’t going to understand why.

Up until now, I have been able to fix things.  I can make things better for him.  I can get him better therapy, different therapy, a different doctor, I can Mama Bear people until we get what we need for him.

I can’t fix this.  I can’t make people be nice to him.  I can’t make the parents understand what I’ve already told them a bunch of times.  I can’t make them teach their children to be kind or understanding of people who are different.

Right now, today, I am having trouble being kind to those parents.  I want to yell at them for modeling bad behavior to their children.  Yes, when you make fun of someone for not wearing cute clothes, your children hear that and think it’s okay to do it to their peers.  When you tell your child that their teacher can’t do anything right, they think it’s okay to treat their teacher like she can’t do anything right.

Greg reminded me last night to not spend too much time and energy on being angry at these people.  I don’t need to give them this much space in my head and my heart.  His advice was timely and needed.

The only way I can figure out how to not let them get to me is to say that mean people are just a face we are going to pass by on the long road to getting Jake better.  They’re just faces.  Faces we will walk by.  Faces we will smile at and keep on going.  While these are the faces that are throwing mud and nastiness into the road we are walking, our job is to get through the mud with a minimum of damage done.

I need to keep reminding myself when I am around these moms that “You are just a face.  That’s all the space you get to take up in my world.  You don’t get any more than that.”

While I am pursuing what is going on at school pretty fiercely, I know that my job is to continue to love, encourage, pray for and build up my son.  I need to be the safe place for him to come when he’s hurting.  I need to remind him that we never put our hands on people when we are angry.  I need to keep giving him tools for when someone hurts him.  (And, no, not showing him that little spot in your throat that really hurts if someone taps it!)  I need to model kind and good and loving behavior for people, even when they are being idiots.

I love that everyone who reads this blog is not just a face on the long road.  You have been my constant encouragers and make me laugh and smile when things hurt.  Everyone needs that in their life and I’m so grateful for it.

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E is for Epilepsy: The 30 Day Miracle

The Smith family are champs at the waiting game.  God has decided to teach us some important lessons about the value to be found in waiting.  I always know that if I order something online, it will arrive on the last possible date.  When we moved a year ago, our moving truck came on day 11, which was the last day they could come without giving us a full refund.  Test results always seem to take longer than they should and Jake and I have gotten great at playing games at stop lights and in longer than normal check out lines.

When we got the epilepsy diagnosis, our neurologist told us that the average time to seizure free status, which is the goal of the medication, is anywhere from 2-6 months and people usually go through more  than one medication before the right balance is achieved.

You can imagine my surprise when, at our last appointment, Jake’s neurologist said, “Well, I’m as surprised as you are, but we are going to consider Jake seizure free.”  I had to ask her to repeat herself a few times, but she kept saying the same thing.

Thirty days and one medication to seizure free status is very rare.  We will do another MRI in March to confirm that his brain has calmed down.  I just can’t wait to stay up all night with him again!

Since the seizures have stopped, school has also gotten so much better for him and therefore, for me.  He has a full-time aide, who is wonderful and who Jake believes is his girlfriend.  She is there to monitor him and to help him get started on his work and to give him hugs during math.  I wonder if my math experience would have been better if I had some hugs during math!  At the end of every day, I get a chart of his day and notes if he had a hard time.  He has had 10 green days (with no warnings or time outs) in a row and we are pretty stinking excited about that!  He has also gone from the middle of the class academically to close to the top of the class.  He is testing better, his comprehension is way up, and since his brain isn’t shutting down every few minutes, he is able to focus and track with his teacher.

As an aside to parents:  If you think something is not right with your kid and what everyone else is saying is wrong with your kid doesn’t sound right, pay attention to that little voice.  Keep pushing to find out what your gut is telling you!  I was told many times that Jake had ADHD and an anxiety disorder and it just didn’t feel right.

His behavior, attitude, and smart little mouth have all returned to the Jake that I had before we left Colorado.  Last week, his gymnastics coach came up to me with a big grin and told me, in great detail, how great Jake was during class.  I told him, “That is the Jake that I know and love and I am so happy that everyone else gets to see him now!”

We still have our struggles with a stinky Kindergarten attitude and a strong desire to eat nothing but graham crackers, but life has gotten so much easier and smoother over the last couple of months.

I don’t know why we got the “get out of jail” free card on this one.  We don’t usually and although I am a firm believer in God answering prayers, I have come to understand that He tends to answer prayer in ways that fit His plan and are for our eternal good, not our short-sighted good.  And, “good” doesn’t always mean what we think it means.

Don’t misunderstand me that our journey is done.  We are two years out from even considering weaning Jake off the meds to see what happens.  In the meantime, we have monthly blood tests,  EEGs three times a year, and constant monitoring.  I’m not happy with a few things I’ve seen lately, but I don’t know if Jake was spacey and exhibited some seizure like behavior because he was spacing out and tired and getting sick, or if there is something more that we need to deal with.  We still have a long road to walk, but we are already over a lot of the bumpy parts.

I am grateful that I have the cutest and funniest little guy walking with me on my long road.  My parents sent Jake a doctor outfit for Christmas since he wants to be a doctor when he grows up and here are a few pictures at his last neuro appointment.

Since he is so skinny, he is proportioned like a grown up, which makes his stride into the hospital even funnier:

Doctor Jake 2

He is doing really well at reading now, so he is actually reading some of the parts of human anatomy!

Doctor Jake

I’ve taken to letting him dress up as a doctor whenever we have to go visit a doctor’s office.  People are rarely there for a good thing and I hear the wave of laughter and funny comments that come after people see him dressed like this.  Everyone needs a laugh and if we can make someone smile in the midst of our own trial, I’m happy!

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