Recap from the Travelodge bathroom

I am writing this post sitting in the bathroom at our travelodge as we are trying to keep the room dark in hopes that Addie will fall asleep.  She has hardly slept all day but managed to get all excited over the trashcan and room phone and got too wound up to go to bed! Only a nearly 2 year old could be so excited about the Travelodge.

We really appreciated all the prayers for today’s travels.  The Bendadryl worked like a charm and Max slept through take off and was awake for landing but didn’t seem to mind it nearly as much as we had worried.  He was, of course, the far easier baby to handle all day today.  Addie did not sleep the whole flight and has been quite a handful!  Travelling with toddlers is quite an ordeal!

We were blessed with so many understanding people along the way.  We had a shuttle car meet us at our car and help us get all our stuff to the terminal.  Then we had the nicest check in lady who upon us telling her a little of our story, started crying and waved all our baggage fees and let us check our heinous 72lb bag full on dialysis supplies and meds as medical equipment rather than paying thr 100 dollar fee.  That is the bag that did unfortunately end up missing our flight but is now safely here with us so all is well that ends well!  We had a really nice man give up his exit row seat for a seat in the back so my mom could sit with us.  We really appreciated these blessings that just made for a smoother day!

We are all settled in and enjoyed delicious pizza with our friend Gerri, the babies' transplant coordinator.  Now it’s time to get some rest for a big couple of days.  Tomorrow Addie will go to clinic and see her doctors and nurses which will be fun.  Al has a lot of running around and testing to do.  And then at 245pm, we meet with their neurology team to discuss Max.  That is probably the part we are most interested in and I suppose nervous about for tomorrow.  We didn’t love our experience with neurology in Texas and talking about Max's neurological issues can be discouraging and emotional but we are hopeful for a better experience tomorrow.  Please keep us in your prayers for that meeting and all our business tomorrow.  We really appreciate the love and support for this trip!

Do you hear what I hear?

Max and Addie's hearing loss was actually the reason I started this blog, although most people probably do not realize that.  In May of last year, we got our first hint of concern when they failed newborn hearing screens.  Then in June, the completely failed their sedated hearing tests and we were told they both had profound hearing loss. I didn't post anything about in on Facebook and was very cautious about who I told or let my parents tell.  It was a very emotional thing for me, in a lot of ways more so than their kidney condition.  By October it was time to retest their hearing and begin the process for hearing aids etcetera and I knew I needed prayer and support and couldn't not talk about it anymore.  So I started this blog like a week before so that I had some way to do that.  It was too much for a facebook status and I needed something more open than a group email.  So I started a blog so I had somewhere to tell people that Max and Addie had lost their hearing.

And I did write about it in October and then of course Addie got sick and we found out about Max's brain and the blog became of the best decisions ever.  I had this place to share news, good and bad, and to share Addie's journey to transplant.  And because all of those issues took over, I don't think I've ever really written about hearing loss again.  This week we had a big meeting at the Center for Hearing and Speech with Addie's speech therapist so it seemed time to write about one of my least favorite topics, Addie's hearing loss.

First of all, we are astoundingly thankful that Addie really does hear so much more than we had originally been told.  After months of thinking that they heard nothing, we are still so thrilled that she knows so many words, that she can tell if we say touch your 'nose' vs 'toes'.  Without any hearing aids, her comprehension of words is really impressive. And given what we had been warned, we are just so thankful! I remember too vividly the day they told us about their profound hearing loss and I remember mourning for them living in a silent world.  I love music, I love hearing people's voices, I love sound so much that I hated the idea of them missing that. I am so thankful that we know now that they do actually hear a lot and when I see Addie dance to music or sing to a song, it makes my heart fill with joy.

And it is actually easy to not think about her hearing loss.  She responds to us and hears so much that you don't really notice it when you are around her.  But she is not talking so it's clear that it is affecting her.  But in terms of dwelling on it, I guess I have generally just avoided that because it is sad to think about for me.  On top of everything she has gone through and has to deal with, it just makes me sad that she also cannot hear everything.  And so I don't think about it a lot. 

The problem with just being happy she can hear and not worrying about the loss is that I haven't fought hard enough with her about her hearing aids.  And we have a lot of good legitimate reasons we have not.  To say we have a lot of other things going on is an under statement.  And of course I work and am not home that many hours a day.  So there are reasons.  And Addie has historically been pretty awful about wearing them.  So we have had a few good spurts of her wearing them but it hasn't been our biggest priority.

Well we had a big meeting with her speech therapist and the whole point of the meeting was basically to scare us into making her wear her hearing aids.  They really wanted to drive home how big of a deal hearing loss is and how much she is missing out on and how many problems it will cause if she does not wear her aids.  And then they revealed their fancy technology where they take her hearing aids and plug them in and get a log of how much she has been wearing them. And I totally felt like I was in the principal's office in trouble!! And I was such a goody two shoes nerd that I am not used to being in trouble!  So between feeling like I was being reprimanded and then feeling like it was being emphasized just how bad hearing loss is, it was not a fun appointment.

But, although I wished there had been more compassion and empathy involved, I will tell you that today Addie has had her hearing aid in for 8 hours! And I have replaced it any time she has pulled it out and done everything they wanted me to do!  Mainly because I'm scared of the log! And also because they did make their point- hearing loss is serious.  Addie does need her hearing aids to learn to talk and to develop properly and I do need to do everything I can to help her through this.  I will say that today was also an answer to much prayer because although I did push harder, Addie was actually way more agreeable about it and it was just such a good day with her wearing them.  I appreciate that God rewarded me for my diligence with her being extra sweet and good about it!

I understand that Addie's hearing loss is going to be a lifelong issue for her which does make me sad.  But I will still tell you that their are worse issues to have.  Because it isn't life threatening and given she has spent the last 2 years fighting a life threatening condition, that means everything.  And because it doesn't affect her ability to think, be independent and socially interact.  And given her brother has a condition that does... again, it puts it in perspective.  So hearing loss is not a tragic problem to have.  And we are so incredibly thankful for what she can hear.  And will not stop being grateful for that.  But we will recognize that it is important that we address her hearing loss and persist with her hearing aids and get her all the help we can.

At some point, we will also address some of these issues with Max.  We don't really know what he can hear because we do behavioral testing with Addie now where she turns to tones and we cannot do that with Max since he cannot turn his head.  So it's harder to know what kind of hearing aids he needs.  And with his sensory overstimulation issues, we want to make sure not to put the wrong amount of amplification.  Additionally the Center for Hearing and Speech is specialized for working with kids for whom hearing loss is their main issue... they really are focused on helping kids who are cognitively normal but have speech problems due to hearing loss- like Addie.  Max would not be a candidate for their hearing school or speech therapy.  So it's a bit harder to know how to address his hearing loss in context of all of his other issues.  But we will figure it out one of these days.  For right now, we have plenty of other issues to worry about with him.

We would appreciate prayers that Addie does continue to wear her hearing aids and that her speech just takes off.  She uses signs and is so adorable trying to communicate with us!  We know she is ready to talk and we're hoping and praying with our new attitude and enthusiasm that we will see big improvements!

And to end of a happy note, here is Addie enjoying her new swingset at Nana and Papa's house!

Fear of Flying

Worrying about Max on an airplane is not a new concern.  People often wondered why Max and Al did not come out to California during Addie's transplant and aside from all the dialysis ordeal to get him over, we mainly just did not want to risk putting him on a plane.  When we were making those decisions, his airway was still much weaker and his blue spells much more frequent and it just scared us to imagine him doing that up in the air.  We decided it was safer to keep him on the ground!

Then it came time to consider transplant for him and flying was inevitably going to be a part of it.  So we just accepted it.  Then a few weeks ago Al became really concerned about it again after noticing how Max reacted to elevator rides.  While on the elevator he would clench all of his muscles and go really hard and turn bright red and not breathe.  It's a really strange reaction and Al was concerned because it would last the duration of the elevator ride.  He also sometimes would do it just when we picked him up out of bed.  We started imagining that happening the whole take off time and got most concerned.   So a series of phone conversations later and we decided we needed to work out whether he was seizing or just panicking.   If he was panicking, he could try and sedate or calm him.  But, if he was seizing, sedating him could actually make matters worse.  So we needed to know.

We have no evidence that Max has ever had a seizure.  I felt like I may have seen one once.  But in terms of true data, it seems that Max does not have seizures.  Which is amazing.  Because when the neurologists looked at the scans of his brain, they felt that he 'should' be having seizures given the extent of his damage.  And we have definitely tried to find him having one.  He has had between 5-10 EEGs, including one that went for 36 hours straight.  An EEG involves being hooked up to electrodes and having your brain waves measured.  If you have a seizure, it causes the brain waves to alter and it can be seen on the EEG.  Max has had all normal EEGs. 

Max getting a 36 hour EEG in February

But we have only done them in hospital room settings.  The idea for Monday's study was to actually do an EEG in an elevator and try and capture his reaction.  Amazingly the logistics of that did actually get pulled together and Max did get to have a video recorded EEG in an elevator.  He had to go up and down the elevator many times and Al was really encouraged to see that his reactions became less dramatic as the went up and down more times.  This made us feel he must be stressing or panicking and not seizing.  It also encouraged us that even if the plane frightens him at first, that he will get over it.

And we got the EEG results back and there were no seizures during the ride and he maintained his heart rate which was also important.  This is great news! We are so thankful that Max is not having seizures.  We have been given the advice to give him Benadryl and hope we knock him out.  It seems that it is an exaggerated startle reflex or panic.  This is a fairly common characteristic of children with neurological issues that they will panic more easily and more severely.  Hopefully if he is a bit drowsier, he will be less frightened and less likely to hold his breath and go stiff. 

While we are definitely feeling better about his safety, we would really appreciate prayers for Sunday.  We hate to think that he could be really scared and panicking for a long time so please pray he can sleep through the flight and arrive safely and happily in California without any drama!

Dear Addie

Dear Addie,

Today is your first half kidneyversary.  It's crazy for me to think that you don't even remember this day 6 months ago because it is etched so deeply into my memory.   Even though you won't be able to actually recall the details, you will feel like you can because I am going to tell you about it all the time.  Because 6 months ago the greatest miracle of your life happened.  6 months ago hundreds, actually probably thousands, of people lifted your name up in prayer.  You were on everyone's mind and in everyone's hearts. You are so incredibly loved baby girl.  And 6 months ago, God healed you.  I will never fully understand why you had to go through everything you did and I will always wish I could make it so that you didn't.  But I also know that at 22 months old, you have more of a testimony than most adults.  And that already in your life, you have shown more bravery and inspired hope in more people and brought more tears of joy than I certainly have in all of my 30 years.  So I know that there is a purpose to your turbulent start to life.  And while I was not able to spare you from everything you had to go through, 6 months ago today I got to save you from going through it anymore. 

I am thankful that you will not remember your 10 months on dialysis.  I am thankful you won't remember the days following your surgery.  You went through more than any person should, much less a precious little baby.  I will not ever forget what all you went through but I am glad that you will.  What I want you to remember is how many people fell in love with you and adore you.  You are everyone's baby.  You went through everything you did with a beautiful smile on your face and threw out kisses to everyone who took care of you.  What you suffered through with not being healthy, we all tried to make up for in the love we all showered on you.   Lots of people fought for you- not just me and your daddy but your nana and papa, your marnie and gigi, your dr S and nurses here in Texas, Gerri and your team in Stanford.  So many people worked so hard to make this transplant happen for you because so many people love you. I asked people to send posters for you leading up to your surgery and you have 300 posters! Lots of them had multiple people in the pictures. The number of people who were praying for you was astounding.  Never forget baby girl how many people there are who care about you and love you.

Your transplant was a miracle not just because it made you healthy but because it took so many things to fall just into place for it to happen.  We faced so many obstacles and there were so many times we could have given up and so many details that could have fallen through and yet, 6 months ago it really happened! It was the greatest lesson for me in realizing I do not know what is best, even when I think I do.  I really wanted to give you my kidney in January here in Texas and I really thought at the time that it would have been best for you.  But God knew better and we waited and you got healthier and you got to be transplanted by the best team and it was so clear to us all it was the perfect time and perfect place for your miracle. 

You were so brave and so amazing.  We were so prepared for you to be so sick but you were off the breathing machine in record time and were sitting up and playing and smiling within a day.  And it's just been awesome ever since.  You have felt so great and it's been amazing to watch you feeling healthy.  You have done so many new things and seem to have this permanent smile on your face.  I know right now you do not fully understand what all has happened but it's like your body knows.  It knows that it suddenly feels good for the first time.  On some level the joy you have had these past 6 months tells us you know you were given your life back, or maybe given it fully for the first time! I hope you never lose that joy.  I hope you never forget what a precious miracle you are and just how many people love you and are there for you.

I know one day you will be a gorgeous popular precocious teenager and you will probably think it's weird that a part of your mom is inside of you but for me, it will always be the coolest thing ever.  I was so blessed that I was a match for you and that I got to go through this with you.  I will always remember the day of our surgery and I will always remember the moment when your nana and papa came and told me that you were 'flooding with pee' within minutes of recieving my kidney.  I had never felt such a strong combination of relief, pride and joy.  Being a part of your miracle was such a privilege and I love knowing that I got to give you a part of me.  Even though it involved a lot of nerves and even more pain, 6 months ago today was one of the best days of my life.

Congratulations baby girl on an amazing 6 months of life with a kidney.  We are so thankful for the greatest miracle we have ever witnessed.  I love you.  We all do.

Your Mommy

 In pre op about to go give you my kidney

 This was 24 hours after your surgery, look how brave you were sitting up with a smile!

Someday you might hate me for this naked photo but it's probably my favorite picture ever. Taken 3 months after surgery, showing off our beautiful matching scars.

Bringing Home the Bacon...

I certainly expected at some point in my life to be a working mom.  When you marry a teacher, you can pretty much see that one coming! And in my hypothetical world, I wanted to be a working mom.  Maybe not always or right away but I was definitely at peace with that idea.  What I didn't expect was to not just be a working parent but the only working parent.  I had always assumed if we did have a stay at home parent, it would be me.  I had never counted on being the 'breadwinner' if you will.  And I certainly never expected that I'd be working with children in the hospital.  With babies in the ICU.  With medically fragile dependent babies to worry about every day.  I mean, of course not.  No one ever expects things like that.  So of course it is unexpected.   But it's not all bad.  Being a working mom is sometimes bad but sometimes really good.  It may sound strange but in a way I actually don't see how I would have survived these last two years without my job.

Since people may not know how we ended up with our current set up, it was basically a matter of default.  At the time the babies were born, I had a full time permanent position at a school I had been at for 2 years and Al was working every day substitute teaching.  He had a hard time getting full time work here between immigation issues and the economy being well, sucky.  We had no idea it would be as hard as it was but anyway, it was.  So for the year the babies were born and in the NICU, we managed to both keep working some.  I didn't actually work a lot that semester after the babies were born but enough to hold on to my job.  And Al subbed when he could.  And then the babies came home and obviously we had to have a parent home with them since they came home on dialysis 17 hours a day.  And my job was secure and had insurance and Al's was not.  So he would be the one to stay home and I'd be the one to work. 

I love teaching but I will tell you that I went back to work at the start of last year for the insurance.  And it was worth every second of stress.  Our insurance paid for all of Max and Addie's medical needs and went above and beyond paying for us to go to California and even covering a lot of our travel expenses.  We would not have been able to transplant Addie without it.  Our insurance saved our babies lives and I know that going to work was the best thing I could do for them last year as their mom. 

But my goodness, it was hard some days.  Max was in his phase of turning blue and stopping breathing and I worried about him many days.  We had appointments with hearing specialists and neurologists and were told absolutely gut-wrenching bad news and I'd head back into work the next day.  Then Addie got so sick in November and ended up in the ICU.  And I really tried to work part of that time but only made it 4 days out of that 3 weeks.  I juggled transplant plans and hemodialysis, surgeries and a lot of concerns about Max's condition in Spring semester last year.  There were many days when going to work and teaching was the absolute last thing on my mind.

Teaching teenagers though is such an interesting job.  I know there were days when I just wished I had a boring desk job where I could sit there and churn through some numbers- anything that did not involve being 'on' and enthusiastic and disciplining teenagers.  (One day the year Max and Addie were born I returned from a week off for their kidney removal surgery to find that one of my students had drawn a very realistic life sized drawing of Osama Bin Laden across a lab bench in my classroom- it's always fun to see what teenagers will throw your way!) Teenagers don't take it easy on you when you are going through a hard time or having a bad day.  They don't sit quietly so you can decompress at your desk.  They are full speed ahead, ready to take advantage if you are tired and weak.  They say things that make you well up with tears, like when you hear one of them make fun of deaf people when you are dealing with your child's hearing loss... or hearing them call special ed students the 'r word' when you've just been told your child has cognitive deficits.  There have been moments when teaching with everything we have had going on has just felt impossible.

BUT, the same things that made teaching hard are also what kept me sane and helped me through.  Falling apart wasn't an option.  No matter what was going on, I had to plaster on a smile and stand there and get excited for Science.  I had to leave my stress behind.  I had to be strong.  I had to find some happiness and enthusiasm on days when I would have rather sulked.  And doing that actually helped me be strong, it helped me be happy and it cheered me up.  Having to act cheerful ended up making me cheerful a lot of days.  And for every teenager who would say inappropriate things or act up, there were 3 others who loved me and would ask how my kids are and come in smiling and glad to see me when I was there.  There were kids who would make me laugh with their funny stories and make me smile with their sweet attitudes and cheerful dispositions.  My students ended up being an escape for me, a source of joy for me.  I actually credit them with helping me through last year.

On top of that, I am so lucky because I work with amazing other teachers who supported me in every way from donating paid leave to bringing us meals to helping with my classes when I was gone.  I have had so much support from my workplace. And I actually became really close friends with some of my co workers.  When everything first happened with Max and Addie, I felt really lonely because my closest friends were all the way in Australia.  Hannah would talk to me all the time and I emailed her almost daily and she came out and visited.  But I didn't have a really close friend here to talk to and share it all with.  Then my crazy year last year happened and I did keep working and I was there even on tough days and I shared those crises and my friendships become closer and stronger and by the end of the year, I wasn't lonely any more.  My friend Shannon is one of my best friends and she helped me through every single bad day last year and even came and stayed with us in California and even if nothing else about work was great, it'd be worth going every day just to see her.  And the other friends I have made there.  As much as I would have loved to be home with my babies, I know I needed that support last year and that it proved to be a great blessing that I had to go to work and was in an environment where I was encouraged, helped and loved through it all.

Now this year at work has been this great fresh start.  I haven't been away.  I have felt like I've been able to teach properly and with less distraction.  I have a lot of great students that I really love and I'm not feeling like I have to fake enthusiasm and cheerfulness.  We are in a much better place and being a working mom has been easier.  It's about to get a bit trickier as we head into another transplant but I'm really glad I've had such a steady few months and feel like I've really started this school year off on a totally different note from the last couple!

So even though it hasn't always been easy and even though it means missing out on way too many hours with my precious babies, I am so thankful for my job.  I am thankful I have a job because I know that is a blessing in itself.  I am thankful that it has enabled me to take care of my babies and ensure they got their medical needs met.  I am thankful for the days my students have cheered me up more than they'll ever know and I'm thankful that I get to go to work and see my friends who listen, make me laugh and love me and my family in good times and bad. 

A non political Election Day post

Given we only have a Presidential election every 4 years, I hardly feel like I can blog today and not write about the election.  But, I am not a fan of political controversy.  I have lots of opinions on topical issues but never tend to involve myself in partisan debating. I think I just have so many friends and loved ones with very different opinions that I've learned to avoid going there.

The other thing is that I just have not been very involved in this election.  Four years ago Al and I were election addicts. We watched Bill O'Reilly and Jon Stewart every night (you know, to stay balanced!) and we followed every poll and were obsessed with it.  I even hosted a Super Tuesday party.  Yep, that's how cool I was.  My whole place was decorated in red and blue balloons and streamers.  I made homemade cupcakes with red and blue icing and then I made homemade cupcake toppers.  I printed off photos of all the contestants and cut them in circles and then laminated them and then stuck them on toothpicks.  I really wish I could find a picture of them because my John McCain round cupcake heads were pretty hilarious!

Now four years later, there was certainly no Super Tuesday party, sadly! And although I've briefly followed things and watched snippits of debates, I just haven't been very involved this time around.  And the simple reason is that I'm just too absorbed in my own world.  And I imagine most of my friends who have settled down and had babies in the past four years would find the same- your life changes and your interests change and I just watch far more Elmo's World than Daily Show.  And on top of just the normal growing up and becoming a parent process, we have had these crazy couple of years and I tend to get really caught up in medical issues and kidney stuff and working on these transplants and I sometimes just forget to follow what is going on in the big world out there.

It can be difficult when you are in a turbulent time to remember that there are other significant things going on out there.  To remember that people you love have their own dramas and interesting things happening.  To remember that this month we are picking a President and not just picking whether we transplant Max. I guess it's just easy to become self involved, or more broadly family involved.  But it's something I am working on.  I want to remember to step out of our baby bubble and be involved in the world out there. I need to stay up to date with current events and maintain my friendships and relationships and be as invested in people's world as others are in mine.  Slowly but surely as our life settles down (which let's face it, isn't really going to happen the next few months!) I am working on reintegrating back into the real world out there and out of our bad kidneys sick babies bubble.  Who knows, maybe by 2016 I will have gotten my groove back and I'll be making laminating Marco Rubio cupcake toppers... ;)

Meanwhile across the world today is significant for another reason.  Today is my wonderful mother in law's birthday. I am so thankful for my mother in law.  Max and Addie are so blessed with the four best grandparents ever.  They are so loved and so taken care of.  Their Marnie is about to be making her 5th trip out in less than two years, all the way from Australia.  When we were going through such a hard time in February, she knew we needed her and booked a flight and was out within the week. She has been such a support to us and we love her so much and we are so excited to see her in just over a month!

Ode to Papa

Today is my Dad's birthday so today's post is a tribute to him.  Happy Birthday Dad!

This is me and my dad on my 2nd birthday so when I was right around the twins' age!

For those of you who know him, you already know he's pretty much the nicest person ever.  He is always cheerful and kind and talks in a nice loud booming happy voice and walks around humming and bopping to non existant music.  He is goofy and tells funny dad jokes.  I found a photo that proves he's been like that my whole life

 

(I think at 2 I was not yet understanding the sophisticated humor of putting Mr Potato Head parts on himself and on me!)

And he is not just a cheerful happy person- he is actually the most brilliant person I know.  He is crazy smart and incredibly driven and it turns out if you are really intelligent, really devoted and really nice, people like to promote you and you can make a very good life for yourself and your family.  My dad had a hugely successful career and has been incredibly generous to us.  We would be in mind boggling amounds of credit card debt right now if it were not for my dad.  He always takes care of us when we need it and makes sure that even though things are tight with 2 million dollar babies and one income, that we still have everything we could need and most things we could want. 

My dad taught my brother and I to be smart and competetive and hard working.  He loves playing games and would play with us but he never let us win.  I got beat at Candy Land for years until I finally had to step up and work out how to beat him.  He engaged us in discussions about politics and real issues when we were young so we grew up knowing how to debate and talk with adults.  He helped make us better people.

Max and Addie are so lucky he is their papa.  He plays so hard with them.  Last night he was chasing Addie all over their house.  And she would pretend she didn't want him to catch her and then laugh so hard when he did.  As soon as we get to their house, she looks for him.  She goes room by room looking for him.  And as if she knew his birthday were coming up, last week she finally started saying 'Papa'.  My dad is like Max's second favorite person behind his own dad.  He adores his Papa and they spend lots of time together. Not everyone really 'sees' Max.  They see that he's cute but not everyone can see through his issues to really see what an amazing person he is.  My dad totally can.  He loves spending time with Max. He wants to see him and hold him and include him.  He genuinely gets excited for Max's inchstones.  He spends hours teaching Max all about football and golf when they spend time together.  He is the best papa either of them could hope for.

He was there for them when they were so tiny and new

He was there for them when they were sick, even when they were so compromised they made us gown and mask up to be allowed to hold them

Max shares his Papa's rosy cheeks

Addie shares her Papa's cheeky smiles

And what is really special is that my dad ended up retiring on the early side last year.  So he is really involved in their lives.  It's been a blessing having him retired.  My mom works incredibly hard helping us- she takes care of Addie 3 days a week and does all the hospital and therapy appointments.  My dad has been able to help and support her as she does all of that.  And he has so much more time to spend with the babies.  Addie spends tons of time with her papa and I'm so happy to see the relationships they are nurturing.

So today I am thankful that the nicest man in the world is my dad and my babies papa.  I love you, Dad!