No, we still don't do sugar! Happy Halloween

Jack was on the ketogenic diet for epilepsy for 3 years, starting when he was 14 months old.  People hear keto and say "oh, I do that" and let me tell you, NO YOU DON'T!  What you do is Atkins or low carb.  Which is great and a good way to cut back on carbs and processed foods (if you do it the way to cut back on processed foods).  But until you weight every speck of food on a gram scale to a 10th of a gram, have to be hospitalized to start the diet, have blood work every 3 months to monitor, check ketones to make sure you aren't acidic, and be closely monitored by a dietiatian, you aren't really doing what is known as the ketogenic diet.

Okay, I'm off my soap box about that.

But while he was on that we went to a play date that was also a fundraiser for a friend of ours.  It was quite large, with at least 25 other mom's and their babies through preschool aged kids.  I was doing my best to keep up with Jack, but it was super crowded and I was having trouble not stepping on small people.  This was after he was walking but pre-surgery.  He went around a corner and I was quickly following, but another toddler followed by her mom was coming the opposite direction so I let them through.  That 30 seconds or so was enough time.  Another mom gave him a raisin.  I dug it out of his mouth and as I did he went limp in my arms and then stiff and started to seize.  I scooped him up and did my best to scramble for an open space.  I get slightly claustrophobic, plus I didn't know anyone there and everyone was completely ignoring me.  I was screaming his name and it was as if we were invisible.  Of all the seizures he had, it's one that really sticks out.  One stupid raisin, 25 other mom's around all unwilling to help, I felt so alone and helpless.  I pretty much stopped going out with anyone who didn't have a special needs child after that for a very long time.  I was traumatized by the lack of response from anyone.  I laid my seizing child down on the floor and was checking his breathing, yelling his name, timing a seizure, and no one even asked if there was anything they could do to help.

(Yes this is an old video, but his seizures still look pretty much like this with the blinking, I just don't try to catch them on video anymore because he tries to hide them from me now.) 

So all of that was leading up to why we don't do candy at all.  Well, if he has a seizure from a raisin, what do you think actual sugar will do?  There was another time on keto that he had a piece of cantalope and a few cheerio's at lab school and he had 3 seizures that afternoon and I could not figure out why.  The teacher told me the next day that he got into that snack.  She felt pretty awful when I told her about those seizures, because yes, it does have that big of an impact.

He has been off keto for a long long time.  He has cake at birthday parties!  And pizza!  And the child can eat.  He eats a TON!  But cake at least has eggs and fat and other things besides just sugar.  candy is pretty much just sugar.  So on Halloween he will get to trade his candy for a small toy, and get some sugar-free candy (made with xylitol and stevia, we don't do crummy artificial sweeteners either as those can sometimes be a seizure trigger for some people).

So no, we don't do candy on Halloween, or Christmas, or Easter, or any other holiday.  Seizures don't care that it's a holiday.  Holding my child while he seizes is the most helpless, worst feeling in the world and I will do whatever it takes to protect him.  I tend to have to spend a lot more (both money wise and energy wise) than the average parent to make it so that my kiddo doesn't feel like he is horribly different than everyone else.  So that he still gets enjoyment out of it, but hopefully doesn't have brain damage because of seizures.

But tomorrow we will get together with friends!  We will get all dressed up, go trick-or-treating!  The kids will trade their candy for sugar-free candy and a small thing they picked out off of Amazon and they will have a blast running around with friends!

      

Service Dog and the list of diagnoses and a very long overdue update on Jack!

Hey, I figured out how to long into the blog!  and it only took me a few weeks.  Really, it took me weeks to figure it out.  oops.

Jack is a feisty little thing.  Full of life, love, and an amazing amount of silliness.

TSC (Tuberous Sclerosis Complex) is part of every day life for us.  Jack has a very small brain tumor that has been stable but still requires yearly MRI’s for monitoring.  His heart tumors are stable as well and we don’t have to scan those for another 2 years.  But we are worried about those growing possibly at puberty.  Eye tumors were added to our list of tumor growths this past summer in a very off-handed way as if it should have been expected and I had to stop the doctor and ask questions. 

Then there is the fun behavioral stuff that comes with TSC.  I’m just going to link to the TAND check list stuff and you are welcome to go look at all of that fun stuff. 

I have a funny story about running into one of the leading experts in all of it in the halls of congress and having a meeting and we have run into each at several conferences now too and she is phenomenal.  So, my point to that side story is that if we decide to have further testing done, I have the inside scoop and know exactly who to go to! 

Okay, so onto Jack! 

First on the list is ADHD – something like 84% of kids with epilepsy also have ADHD.  He is on meds for it and they do work.  I was shocked that we gave him a med that worked!  LOL!  The neurologist got a kick out of my reaction!  And it’s amazing the difference it makes.  Without his meds, he really can’t do one task without being told at least 5 times. 

Epilepsy

Yes, the beast that won’t die.  But here is where you will read the best news, and hopefully where I won’t curse myself too!  Jack’s seizures are super short.  Like 5 – 20 seconds.  He tries to hide them from me though because he knows that I watch and worry.   He still has many tubers in his brain that could become active at any time and start causing more issue and bigger seizures and because he is having pretty frequent small ones, this is a concern.  I’m also concerned about this at night!  This is a big concern at night while he is sleeping and while he is at school, which is a huge reason for the service dog. 

Sensory Processing Disorder

This has been a big problem since surgery really.  People clapping and cheering is usually the worst, though it has gotten easier for him to manage lately.  Hearing protection helps him manage, but not always.  He even managed to talk us into taking him to a UT football game and is such a football fan that he did great cheering like a crazy longhorn!  He has trouble in his classroom managing noise, but does much better now with singing happy birthday.

Autism

60% of people with TSC have autism.  We had Jack tested because he just has some quirkiness that makes us wonder.  He gets stuck on things and will NOT LET THINGS GO and it makes us crazy sometimes.  If something at school doesn’t go exactly as he thinks it should, he gets really upset about it, sometimes to the point of crying for hours.  The funny thing about the testing is that even with the testing, he was right on the border.  He gets when we are getting mad and he makes good eye contact.  He makes friends pretty easily and communicates with people pretty well.  The thing is, he is always right on the border of every test and always has been.  The neuropsychologists who did the testing said that she has never debated so much as to weather or not to give a kiddo this diagnosis or not.  So when I say mild autism, I mean really, really mild!  But there are also some times when we can’t deny that he does have autism.  It’s all because of stupid TSC.  The obsessing, the epilepsy, the autism, the meltdowns, the reason we have to have an escape plan, is all because of TSC.  

So, Please don't try to tell us that our kid doesn't have autism, that isn't helpful.  I had a parent at school try to tell me that Jack was fine and didn't need any assistance at school and I thankfully have grown enough that I just took a deep breath and turned and walked away because while I could have stood there and argued with her, there was absolutely no point in explaining to her why my child is the most severally affectedly child on campus.  While compared to a population of TSC children he is doing amazingly well and is thriving and we are so proud of him, if you compare him to his same age peers, he is significantly delayed.    

But we are hoping that this service dog helps him to have more independence, especially as he gets older and turns into a teenager.  We hope that he is able to be more confident at school and transition easier there.  If things don’t go as planned and he starts to melt down that his dog can do some silly tricks and help him to laugh and distract him and transition into a different activity or nuzzle him and cuddle him and hopefully avoid the meltdown altogether.    

Here is a tiny clip of his happy dance after building a tower taller than him while waiting for his sister after dance class.
 

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 Help Us Raise $17,000 to get Jack a Service Dog!!!

Purple Day

I have said it before and I will say it again, every day in our house is epilepsy awareness day.  But this day, as we frantically try to prepare for Jack's 5th birthday (I'm freaking out that I'm about to have a 5-year-old) we all make sure to wear purple.

This is how old Jack was when he started having seizures.  He was diagnosed with a catastrophic form of this devastating disease.  We were told there was a 95% chance he would be severely mentally retarded.  (That doctor is thrilled that he was wrong!) but I will never forget holding this baby and sobbing in the neuro's office that day. 

There are so many people that we have met along this journey, others who struggle as well, others who have uncontrolled seizures too.  I'll never forget getting a phone call from a friend one weekend asking if we could come get their daughter because EMS was on their way to the mall around the corner because their son had been seizing for 15 minutes and emergency meds didn't stop it.  That seizure lasted 45 minutes and he couldn't walk correctly or talk well for several days.

So, while we "celebrate" to some degree, we celebrate the good days, the days we don't see seizures, the milestones that come so easy to typical children that mine and those like him have to fight for.

I am so proud of him and how hard he tries.

We will never forget surgery to try and stop them.  It helped, and we would do it again if we needed to, but it was HELL and no parent should have to go through that.  I won't ever forget changing my shirt 3x a day because it was soaked in his spinal fluid or sleeping in a crib for 10 days.

And I'll also never forget the support that came form so many people.

Jack is such a loving boy.  He is so kind, gentle, and fun-loving.  He has friends... (and a girl friend)

He loves his family...

Believe me, he has his moments, and given his issues they are usually bigger than most kids moments...

But he is my hero.  

And just like in the years past, we wear purple for Jack.  So many people are unaware of the facts about epilepsy.  That epilepsy kills about 50,000 each year, which is more than breast cancer.  That 1 in 10 people will have a seizure in their life.  And that per 30% of people with epilepsy suffer from intractable epilepsy, meaning seizure meds don't stop their seizures.  

We will never stop fighting for you, my Jack-a-roo!  

Merry Friggin' Christmas

I have several posts floating around in my head.  One that is quite funny is the story of our Jonathan's Christmas tree.  I also need to make a post about how we put the scale away.  The scale that we have weighed all of Jack's food on for the last 3.5 years.  Yep, it's UNDER the cabinet.  And potty training, I actually hesitate to even mention it because I might jinx it.

But this post is dedicated to the little spunky girl who scared the shit out of us this week.  Back at the beginning of November we had her blood drawn to be tested for TSC because we just want to be sure. All of these doctors are telling us that we have nothing to worry about, that because neither Jonathan or I have it that she is fine.  Well, the chances of Jack having TSC were 1:16,000 but because Jack has it the chances of Maggie having it (or any other siblings) are 1:100.  I'm sorry, but 1:100 is a hell of a lot more likely than 1:16,000.  At the beginning of November she was 5 months old which was when Jack was diagnosed with Infantile Spasms.  That time in my life was horrific and a parents worst nightmare and to not know if this was something we needed to worry about again or not was a big concern.

They told us it would be 6-8 weeks for the test results, so about now.

Well, last Tuesday we were all sitting at the dinner table and she started doing this thing.  The first time or two I didn't think much of it.... but it kept going.  Her arms would go up, her head would go down and to the right, her whole body was a bit stiff.  And it happened over and over and over.  I freaked out!  I got some of it on video and was getting ready to take her to the ER.  Then I remembered it was flu season and I paused.  I called the only number I really knew to call and that is the after hours number for the clinic Jack goes to.  They only see medically complex kiddos so Maggie is not a patient there, but thankfully they were extremely helpful.

I texted the NP the video, she watched it and texted it to Jack's pediatrician.  They both said it looked very "suspicious".  The NP convinced me not to go to the ER but to wait and they would get ahold of a neuro the next day and get us in for a full work-up soon.  The next morning I got a call that the doc who diagnosed Jack saw the video, he also thought it was "suspicious" and wanted to get her in for a 24 hour EEG to get to the bottom of it as quickly as possible.

So Tuesday night is when we saw the first "episode" and Thursday morning we were checking into the EMU (Epilepsy Monitoring Unit) at Dell.

Getting hooked up is awful.  Having a baby hooked up is awful.  Really, the whole experience is just awful.  Thankfully I have good friends who brought me "coffee" which was really alcohol in a starbucks cup.  Thursday Jonathan had to work all day.  That night my wonderful sister-in-law took Jack but he got upset so Jonathan went and slept at their house with him.  Thankfully the next day he was okay hanging out with them so I had a little help for a while.  Doing that by myself is next to impossible.  Trying to eat with a baby pulling on those things, grabbing for my food, or trying to take off across the room makes things like eating or peeing seem unnecessary.

Jonathan did earn some MAJOR brownie points by calling the lab that was running the TSC test and getting them to rush her test and have it done by Friday.  I had called the doc's office in Dallas who had ordered the test and they put some pressure on the lab too.

After a very stressful hospital stay, we got the best anniversary gift ever (yep, Friday was our 10th anniversary and we spent a good portion of it in the hospital with baby girl) when the neurologist told us that her EEG was perfect and completely normal.  She did a few individual jerks, which I now call dance moves, while she was hooked up, but never any repetitive ones.  I was hoping for a good cluster like I had seen both on Tuesday and Wednesday but no such luck.  However the neuro was confident that had it been infantile spasms, we would have seen some indication of it on the EEG, even without a cluster.

Of course the lab didn't fax the test results to the doc's office until 4:45 and everyone left at 4:30.  Completely annoying!  We had dinner plans down town but after the hell of the previous few days, decided to say in with our kidlets.  We ended up throwing an impromptu dinner party and it was actually really great.  Honestly, the steak Jonathan made was probably better than what we would have had out anyways.

This morning we started frantically making calls about those test results though and we heard that our little girl does not have TSC 1 or TSC 2!!!!  The nurse went on about how she could still have an unknown mutation and that if she didn't do the cluster thing while hooked up to the EEG that you never know, etc etc etc.  BUT, we are pretty confident that she is healthy and just has a wicked case of reflux.  I have never been so grateful for reflux.  I guess I should not have risked it and eaten that fetta at the office party last weekend because she had definitely been more pukey since then.

So, no more dairy at all for me while I'm nursing (only another 6 - 24 month to go, woo hoo!) and we are all going to have a very Merry Christmas.  I just got my present a little early.  

Dear mom,

One year ago today I was sitting in the waiting room of the OB's office waiting for my 1st appointment with him about the new pregnancy.  My phone rang, I was told to be at the hospital you were at within an hour because you weren't going to make it much longer.

That was a bad day.  

Most of the time I don't dwell on how un-fair it is that you died when you did.  You were 58.  You had 3 tiny grandchildren and one on the way.  For the most part you were healthy and active.  Yet for some unknow reason, your time was up.  

I hate that you will never meet Maggie.  She is amazing, and beautiful, and she has your beautiful blue eyes.  You would be so in love with her.  I think the saddest part is that all 4 of your grandchildren will grow up not knowing you.  I hope the older two retain some memory of you, but there is definetly someone missing.  

Jack still talks about you often.  He asks for you to come out of heaven to visit.  He says he wants to go to heaven to visit you.  He misses you too and I wish I knew how to make it better for him.  You would be so proud of him.  He is doing amazingly well. 

I still have times when I reach for the phone to call you and I even found myself driving over to your house not too long ago.  

I have to wrap this up because the baby is up and wants attention.  I have managed to keep your african violets alive.  The only time one of them bloomed was the week Maggie was born.  They are healthy, I just can't figure out why they won't bloom.  

I miss you and I love you

(Gigi and tiny baby Jack)

The birth of a chunky love

Maggie is here, and 3 months old already.  I figure I should write down her birth story before I forget it all.

On Sunday, May 19th I drank the dreaded castor oil.  It's a way that midwives use to induce.  I had an appointment the next morning to schedule an induction because it was a full week past my due date and the doc didn't want to go much longer because baby was getting big.  I was already going for stress tests on baby 2-3 times a week because they wanted to make sure everything was okay in there and it's best to get baby out before conditions start to deteriorate.

Anyways, I figured I didn't have anything else to lose and I didn't want to have a medical induction.

I took the castor oil early in the morning and then took a nap.  I had a few contractions but nothing consistent.  In the mean time, I sent Jonathan and Jack over to my Grammy's to deliver her meds.  After they left, contractions started to pick up a bit, about every 10 minutes.  Nothing really painful, but noticeable.  I was starting to thing that if things continued, this might be it.  I then get a phone call from Jonathan that the code on Grammy's med box had changed and he couldn't find the attendant that was supposed to be there.  I was beyond pissed!  No only are we paying someone to be there for those hours, but how could that code be changed without telling the person who deals with it???

Jonathan was frustrated, I was beyond pissed off and in labor, and Jack was getting antsy.  After about 2 hours of looking for the attendant, I started making phone calls.  After about 4 calls, I finally got in touch with her case manager.  Contractions were 5-7 minutes apart and that guy got an ear full.  I rarely yell at people but I unleashed on that guy.  I have never had someone try to get off the phone as fast as possible before.  Looking back it's kind of funny, at the time it was not funny at all.

Anyways, Jonathan and Jack went to a splash pad and I stayed at home cleaning something.  Contractions continued.  I called my dad to let him know that something was going on and that we may call him in the night to come stay with Jack.  It was getting harder to talk through contractions.

The boys got back later that afternoon and contractions almost completely stopped.  I was so bummed!  I though for sure it was actually starting but they went back to every 15-20 minutes or so and seemed to be stalling.  We fed Jack, gave him a bath, and I was preparing myself to schedule an induction but to try to get the doc to give me a few more days.  Then we put Jack to bed and contractions started back up again almost immediately.  8 minutes apart and getting closer.

By about 10 that night I knew this was it.  I sent Jonathan to bed for a few hours (on the couch) and I labored in the bedroom and bathroom while snacking occasionally.  At 1:00 AM I tried to wake Jonathan because contractions were becoming really painful and I was ready to call my dad so we could head in when he go here.  I was shaking Jonathan and all he did was snore.  I decided to give him another hour.  Contractions were 2-3 minutes apart and strong!  I wasn't worried about waiting too long because my labor with Jack was 27 hours total and things had only been intense for about 4-5 hours at that point.  At 2:00 I was able to wake him and we called my dad.  He was here by 2:30 and we were off to the hospital.

Contractions slowed down a bit when we got there, which I was actually thankful for.  A break from the intensity was good.  They took us to an evaluation room and before they even checked me I told them that I wasn't leaving!!!!  One way or the other, I was having a baby.  At that point I was 3cm (was only 1cm at the appointment on Friday) which was at least progress.  They got us a room and I continued to labor.

The contractions were only every 5 minutes or so.  Still intense, but I had my tens unit on my back, I was leaning over a yoga ball propped in a laundry basket, and Jonathan was putting pressure on my back.  Between contractions I would sit on the side of the bed and we would chat with the nurse.  They put a "wireless" monitor on me so that I could move around a bit.  I had to drag a battery pack and an IV poll around with me, it was a pain.

By about 7 AM I wanted drugs!  It was shift change so we waited until we got a new nurse and then asked for the epi.  Contractions were awful at that point and back to every 3 minutes or so.  I remember it taking a long time to get it, but the doc was great and the epi worked perfectly.  It didn't hurt at all going in (mine with Jack did a bit) and I could actually still move my legs pretty well.  I needed some assistance rolling from side to side, but at least I could do a lot of it.

After the epi they checked me and I was at 5 cm.  As soon as she was done I felt a Pop!  And my water broke.  There was muconium in the fluid so they had to take a few more precautions when she did arrive.

At this point we called everyone and then decided to rest a little.  Every once-in-a-while the nurse would come in to help me roll over.  They have you roll every 30 minutes or so because if you don't switch sides then the meds from the epi will wear off on one side.  It's not fun.  That happened with Jack and it's very weird to feel labor on one side of your body but not the other!

Shortly after 11 I rolled and then felt something.  I asked the nurse to check me and she told me that I still had lots of time and she would be back in a bit to check.  I tried to adjust and get comfortable but I was feeling too much pressure.  I asked Jonathan to call the nurse back in because the baby was coming and I needed her to check NOW.  She did and her head was right there, fully dilated.  She asked me to do a practice push but as soon as I started, she told me to STOP and that she needed to call the doctor ASAP!

She ran out of the room and Jonathan and I looked at each other and I started to freak out!  I was actually having a baby.  AHHHH!  The doc got there super quick and 2 pushes later Maggie was here.  All 9lbs 6oz of her.  She looked like a 1 month old because of how plump she was.  The doc cleared her mouth and didn't find any signs of meconium so she was totally healthy and fine.

We snuggled and nursed and the whole time we were at the hospital they kept checking her blood sugar because of how big she was.  It was always perfect though so I even managed to convince them to let us go home the next day. 

 

I will write more about what life has been like since Maggie finally decided to arrive.  To sum it up though, we are tired, everyone is adjusting well, and since we got the projectile vomiting/reflux issue settled a bit, everything is dandy.  

Here are a few pics that I haven't shared on FB yet.  

Her first bath at home!  

  

Both kiddos with their Grammy.

And Grammy is totally in love with this girl.  It's actually really enjoyable to visit her lately because she is so excited to see the baby.

 

Maggie Rose

Unlike the previous 2 pregnancies, we actually had to make an effort to get pregnant this time.  Thankfully it didn't take too long, but I think my body is starting to show it's age.

I was a nervous wreck when we first got pregnant.  My OB was great though and did a few extra sonograms at the beginning to make sure baby was growing, had a good heart beat, and to keep me from completely losing my shit.



We went to Sea World when I was somewhere around 7 weeks with my family.  I was so green, it was miserable.  We really debated about telling anyone about the pregnancy before 13 weeks after our last experience of losing the baby at 13 weeks, even though the doc was confident that everything was going to be fine.  But because we were all together and I was afraid I was going to be tossing my cookies anyways, it seemed like the right time.  And here is the video of us telling them:



It's still hard for me to watch that.  Only 9 days after this was taken, my mom went into the hospital and then passed away.  She was so excited!  The last conversation I had with her was her begging me to tell my dad so that she could spread the news.  I didn't want her to spread the news so I didn't tell her that my dad already knew.  But you have no idea how glad I am that we spilled the beans early.  I was annoyed that she wanted to tell people after I had told her that we didn't want anyone but immediate family knowing, but I am so glad that she knew. 

I pretty much knew from the start that it was a girl.  Just like I knew Jack was a boy.  My mom said that she just knew with both my brother and I too.  I would have put money on it.  But we are naming her Maggie after my mom.  Her name was Gail Margret, and her nick name was Maggie.  We tossed around the idea of naming her Margret but calling her Maggie but we figured since we are just going to call her Maggie anyways, we will just name her Maggie to begin with.  Rose is my grandmother's name, my mom's mom, who is still with us.  

Of course I was worried about what the stress of my mom's death would have on the baby, but she has done great so far so we are assuming that all is well in there.  We also did a detailed heart ultrasound a few weeks ago just to make sure she doesn't have any heart tumors, which would be an indicator of TSC.  She looks great though.  We will look her over with a woods lamp when she is born to make sure she doesn't have any of the skin markings.



The first trimester I was sick and my mom died.  That is really enough said.  The second was a little better.  I didn't have to take nausea meds more than once a day.  We took a trip to Mexico which was super fun.  And I started to feel baby move around 18 weeks, which was (and still is) great.



Tiny little dresses from Mexico!  I'm not a girlie girl dress kind of person.  Maggie will be wearing a lot of Jack's old baby clothes and the few other things I have picked out are all NOT PINK, but these were just too cute. 



And the 3rd trimester... well, it sucks.  2 of my friends thew me an awesome baby sprinkle, which was super fun.  I am so ready to be done.  Mostly because I can't do as much for Jack as I usually can and would like to and after baby comes I can eventually get back to being able to care for him like usual.  My body has actually held up better this time to pregnancy, probably because I was in better shape.  I have however reached the point where I grown every time I stand up, I can't sleep hardly at all (don't even get me started on why our bodies think it is necessary to "prepare" us for having a newborn by not letting us sleep.  HELLO, nothing can really prepare you for it!  Starting out sleep deprived doesn't help!)  I am also puking again on occasion, which is just lovely.



On Tuesday I will be 35 weeks, which means 2 weeks until full-term.  But knowing that I went to 40 weeks 3 days with Jack, I will likely be pregnant forever this time!  Or at least it feels that way.  But I can't wait to have my baby girl here safe and in my arms.  Then the real fun begins!