Tuesday, March 25, 2014

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!  



Monday, December 23, 2013

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.  

Thursday, October 3, 2013

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)



Sunday, September 8, 2013

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.





 

Friday, April 5, 2013

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.

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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.

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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.

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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. 

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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.

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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!

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"I'm 4, not 3 anymore"

Jack is very happy that he is four.  Actually he is already talking about turning 5 next year.  He keeps talking about how he is getting all the way big.  And he is growing like a weed!  He hasn't gained any weight in the last 6 months, he's holding steady at 42 lbs, but he grew 2 inches in three months.  He is getting very tall and turning into quite the little boy. 


The last year has been filled with a lot of firsts.  His first sleep-over without us; His first out-of-country vacation; leaps and bounds in his language skills; and really forming friends and being aware of other people's feelings.  


He loves his cousins.  Really, those are the people he asks to be with most.  And his Papa and his best friend Ellie.  His social calendar would be filled every day if I let it :-)  


He was getting really tired by the end of the party, and then we had 26 people at our house for Easter dinner and a huge egg hunt.  We are still finding eggs in the yard :-)  Jack thinks it's great!  Me, well, a day like that at this stage of pregnancy was not the smartest idea.  


Jack can't wait to be a big brother.  He knew we were going to have his birthday, then daddy's birthday, then mommy's birthday, and then the baby will be joining us.  We are just stacking all of the birthdays on top of each other. 

I am so proud of him and how far he has come in the last year.  He is an amazing little boy and I am so lucky to be his mom! 

Tuesday, March 26, 2013

Purple Day, 2013

March 26th is known as purple day.  It was started by a young girl in Canada who has epilepsy.  She wanted to spread epilepsy awareness so one young girl started something for all of those who suffer from epilepsy.  You can read more about her story at www.purpleday.org

 Of course I wear purple for this amazing little dude!


 His strength and courage and ability to just deal with what life hands him is amazing.  He has taught me more in the last 4 years than in my previous 30 combine.


(Yes, my belly is getting huge.)

I also wear purple for our friends.  Friends who we probably wouldn't have met if we weren't on this journey, but friends who I treasure.

Epilepsy kills 50,000 a year.  Epilepsy is underfunded.  Bottom line, epilepsy sucks and we need a cure, better treatments, and for people to understand how wide spread it is.

This little guy, and all of his friends deserve a cure!