Life Lately

As tends to be my pattern, I find the more that I write on my blog, the easier it is to write on my blog. Once time passes, however, the list of things to write about builds and becomes more complex and the task of updating my blog becomes more daunting.  But I want to make sure not to let too long go, less because I have such avid eager fans, and more because this blog is my little scrapbook or journal and I value having my entries to look back on.  And with my lofty goal of writing my book always being in the back of my mind, I want to make sure I do not let whole chapter go undocumented. So, an overdue update on life lately...

It always seems to make sense to start with Mr Max who is defining himself as the star of the story of our life.  He is doing really well at the moment, but has, as most of you know, has an eventful past month with a 15 night hospital stay for a stomach virus. I suppose really his hospital stay was for dehydration and declining kidney function secondary to his stomach virus.  From what we so far seem to understand, Max's kidney seems to be a bit dramatic and prone to stressing out.  Which is actually pretty hilarious if you know Al and I because one would assume that my kidney would be the dramatic emotional one and that Al's kidney would be laidback, calm and slow to react.  But, in an ultimate case of irony, Addie's new kidney seems completely unfazed and rock solid, whereas poor Max's seems to have a bit of a meltdown and pity party for itself quite frequently! So any time Max gets fevers, gets dehydrated or just generally doesn't feel as well, we see his kidney acting up in labs. Which seems to earn him long hospital stays.  Thankfully his kidney perks up with heavy hydration and better health and we don't seem to see an overall kidney problem.  But every time it happens, we have to take it seriously and unfortunately we have to panic over the dreaded 'rejection'.  If you thought fear of rejection was a problem only plaguing teenage boys near prom time, you should just meet organ recipients!  Thankfully about the time we are going to have to do a kidney biopsy and really look into rejection, Max's kidney seems satisifed with the level of attention is has raised and begins behaving again. 

We certainly hope that a lot of this is still post transplant sensitivity and that Max's kidney and his tendency to get infections will settled down.  I do suspect though that when Max does get sick, it will more likely be serious and involve longer hospital stays.  Between his emotional kidney and his cerebral palsy, I think hospital stays are just going to be a part of his reality.  And when it is happening, it totally sucks.  Hospital stays are exhausting and scary and frustrating and we hate when our family is separated.  But once he comes home, we are happy again and the frustrations quickly become distant memories.  So far since transplant Max has spent about half his nights in the hospital but we do expect (or certainly hope), that as time goes on these hospital stays will become less frequent and the happy days of us all being home will become the norm.  Because when things are good with Max, they are GREAT.  He is smiley and delightful and easy and loving.  Our home is so much better when he is there and without dialysis, instead of him being hooked up and unhappy, he is just hanging out smiling and being a part of everything.   So as hard as these hospitalizations have been, it only takes a day of wonderful home life withou dialysis to remember that this has been totally worth it.
I will hopefully write a full proper post about the very exciting milestone that we are now within a week of- Addie's 1 year kidney anniversary.  It is hard to believe that it has been a whole year since we were packing for California, juggling two 1 year olds on two different types of dialysis.  We had actually been warned about all the complications and difficulties that can happen in the first year after transplant.  Warnings that, now that we have been through Max's transplant, seem very fair and logical.  But in reality, this year for Addie has just been amazing and easy and pretty stressfree.  Addie is pretty much one of those awesome feel good stories about how a transplant can completely change someone's life in an instant.  Organ donation is truly a miracle.

As for all other things Addie, she is such a delight.  She still has her two year old moments but the tantrums are fewer and the laughter and chatter constant and precious.  I love how she is developing her own little personality and sense of humor.  Instead of laughing just at being tickled or things that are obviously funny, she has these quirky little things that she finds hilarious and we love watching her become this clever little person.  Talking is coming slowly.  She is now very vocal, no longer a quiet little thing, and good at 'using her voice' to ask for things.  This is definitely progress and now we are working on replacing her gabber with true words.  Hearing loss has definitely been a difficult hurdle and it can be disheartening and frustrating at times.  But Addie has a great speech therapist and she wears her hearing aids all the time (well except for the time she thought it was hilarious to throw her hearing aid in the toilet... hmm, one of the less sophisticated aspects of her new sense of humor!) So no doubt talking will come and probably we won't be able to stop her then! Addie still does not eat which I always forget how weird that is to people.  But yeah still have a long way to go on that but she recently has started with a new feeding therapist so hopefully that will take off soon.  We need to tube feed her less for sure because she is never hungry so this summer I am going to make that my project to try and get her eating.
I had a wonderful weekend last weekend going to Scottsdale, Arizona for my future sister in law's bachelorette weekend.  It was my first vacation sans babies since they arrived and it was a wonderful break.  I took off the kidney necklace I wear all the time and left it at home so that I would not lose it and also as a symbolic reminder not to talk kidneys and medical stuff all weekend!  It was weird and nice to reconnect with myself and remember there is more to me than just mommy me.  The girls were so much fun and I loved them all and thoroughly enjoyed sunbaking, a massage, nice restaurants and sleep ins.  It was totally relaxing and a much needed recharging after a difficult few months since Max's transplant (or more accurately, a difficult over two years since they were born!) But, I was also happy that I was really ready to head back on Sunday.  Max and Addie, and honestly all their medical and developmental issues, are such a part of me and I felt a little empty without them around. I missed them and I was ready to re-enter the world of baby cuddles, laughter, toys everywhere and the constant background music of Elmo's world.  Of course that much is obvious- all mommies miss their sweet babies when away.  But I also was ready to get back to feeding tubes, medications, analyzing labs and pretending to be a baby therapist.  All the things which admittedly can be stressful are also what have made my life interesting, and they are what give me purpose.  I think a chance to breathe and be away from my crazy life just made me that much more ready to come back and embrace it.

Well as usual a very longwinded way of letting you know that we are all doing well and are happy. And definitely counting down until summer vacation all together in Houston, no surgeries and hopefully minimal drama!

Time, you finally have my permission to slow down!

From my hours of research into 'normal parenting' (and by research, I mean Facebook and by normal I mean someone whose children are not routinely having terrifying medical dramas)... there seems to be this common feeling of bittersweetness associated with your babies growing up.  The many posts about tears at first birthdays or sadness mixed with joy at first steps.  Of course there is the excitement but also this desire for time to just slow down a bit and not let those babies grow up in the blink of the eye.  The need to savor the sweet days of infancy and those baby days. 

This commonly expressed feeling has always been so foreign to me.  I have never wanted time to slow down.  Well I have certainly wanted a weekend to last longer and Monday to stay away, of course!  But I have always looked at my babies growing up and hitting milestones and ages with an eagerness and a feeling of finally!!  I have said before that we certainly made the most of an 8 month NICU stay and made fond memories... but did I ever want time to stand still and soak it up more, no!! I wanted my babies to hurry up and get big and well enough to come home.  Those 8 months seemed very long and I urged time to go as fast as it could! And then the babies came home and dialysis was such a big deal at first and we just wanted them to get to be big enough for transplants!  And Addie had so many issues on dialysis so I was so scared.  I couldn't stop and enjoy now because I was so worried about her making it to the future.  There was some relief after her transplant but knowing we still had Max to go and that his could be (and in the end, WAS) a bigger deal made me again ready for time to pass and us to get on the other side of that hurdle!  And of course by rule of the watched pot, the more you long for time to pass, the slower it does go!

And with the developmental delays and the concern over what they might be able to do or not do, every milestone felt more like 'Finally!' than like the end of a sweet baby era!

For all those reasons, I have not really ever felt any desire for time to slow down or to stay in a stage longer.  I haven't really missed a phase yet.  I miss people (like NICU nurses) and certain mannerisms (like Addie's air kisses) but really missing an age or a phase of our life, honestly just hasn't happened.

UNTIL NOW.  I absolutely love where we are at RIGHT NOW.  And I don't want it to go by fast any more.  I love having two year olds.  Tantrums and mischeif and all.  CP and hearing aids and g tubes and all. I love it.  And if I could press pause and just stay here a little longer I totally would.  Not because I dread the future.  Because I really don't.  But just because for the first time in two years I feel so content and happy just to be. 

I feel it even more strongly with Addie than Max since a lot of Max's sweet baby qualities are more enduring and he hasn't changed as dramatically. I just don't feel the effects of time as profoundly with him. But I look at Addie and I just love everything about how she is right now and I just want to slow time down and soak up every bit of her beautiful half baby half little girl state.  She is so much still my baby and yet becoming such a big girl.  It is the sweetest thing ever.  And I totally look forward to her talking and playing even more adorably and I know her future is full of fun things to be excited for... but I kind of hope they don't come too fast.  Because before I know it she will outgrow smocked dresses and she will know how to talk back and she will choose someone over mommy... and so I am ok with just staying right here for as long as we can.

I will celebrate every new milestone and every new phase but now I will get to do it with that bittersweet tear of knowing i have so loved this one that is passing as well.  So I hope and pray that these next two years pass as slowly as these last two have because I plan on really enjoying these next ones and living as much as possible in the moment enjoying each day.  Wow, I am really becomming a normal mom.  Ha!

My Emotional Journey with my Absolutely not Terrible Two Year Old...

As if it is some sort of biologically imprinted destiny, Addie learned the art of the tantrum about a week after she turned two.  And just like that, we understood what term 'Terrible Twos' is all about.  In a way it is at times almost adorable as she has learned this new move of angrily crossing her arms and looks like a tiny little teenager.  Then there are the not so adorable parts like the tears and screaming and the arms flailing about.  And in case you were worried these meltdowns were caused by some sort of sad circumstances like getting labs drawn or medicines or anything...oh no, they are almost always caused by us not allowing her to watch her Elmo DVDs at the exact moment she wishes.  It's pure Elmo rage. And the rest of the time, she is the sweetest most adorable person in the world.  She gives kisses and laughs and reads books and is just the happiest little thing.  But oh the tantrums... wow.

I read on Facebook the other day that a friend had two 2 yr olds for a few weeks as her one yr old just turned two and his brother was not quite three.  And since it had been a day with a couple of tantrums, I was like omg, imagine TWO TWO YEARS OLDS!! The horror!! Of course as soon as I said that aloud to my dad, I realized the irony that I do of course have two 2 yr olds.  Haha.  But honestly I do not feel like I have two two year olds because Max does not have any 2 yr old tendencies.  He has never even come close to a tantrum.  He does not demand anything, he is not getting into mischief or disobeying or screaming.  He is still pure goodness.  He inhabits the big body of a two year old but for now, he is still our baby.  As innocent and perfect as cuddly 3 month old. 

A speech therapist was evaluating Max's language development and they asked me if he knew the difference between when we were scolding him or fussing at him and just talking normally.  I looked confused.  She asked if he knew when we were telling him he was being bad.  And I finally was like 'but Max has never been bad!'  He has never been scolded.  I mean unless we were going to fuss at him for vomiting...!  But yeah, he doesn't cry for things he wants, he shows nothing but love and warmth for everyone.  And his feelings for Elmo seem to be fairly neutral.  I am confident that at least one of my children loves me more than a red furry puppet.

Sometimes I think about all of that and I just feel so lucky.  That I get to be the mom of a child who is flawless and embodies the beautiful innocence of a baby.  To have a child who smiles every time I look at him and who is grateful and excited for any activity we plan.  The term 'special' in the term 'special needs' makes a lot of sense to me. Because a 2 yr old like Max is so rare and so unique and he is precious in a way for his differences.  For his disabilities.  For the ways in which his cerebral palsy has changed him.  I suspect he would be less fiesty than Addie regardless because she was clearly the boss even in my tummy... but I also know that inevitably if he was a developmentally appropriate 2 yr old, he would have done something wrong by now, he would push limits and he would demand more things and express more disappointment in not getting it.  So I know that his innocence and purity are largely caused by his condition.  Which is where the emotional part for me comes in...

More and more I have these moments of feeling grateful that Max is so gentle natured and loving.  I sometimes even find myself being thankful that he isn't running all over the house opening doors or heading upstairs.  And then as soon as I have those feelings, I immediately feel guilty and the familiar sadness creeps back in.  Because although I cherish Max's angelic qualities, I do, at the same time, feel sad for the fact that he is not developing into the mischevious little toddler his sister is.  While his immotility can make life easier, it is of course accompianed by the heartbreaking realization that he cannot explore his world and enjoy opening doors and mastering stairs like Addie can.  He doesn't demand toys or get worked up over things because he cannot really play with them and he does not seem to have the drive and motivation that Addie does to play.  Or maybe he has the drive but since he cannot, he has just learned to be happy without.  I am not sure.  But I know that his cerebral palsy has definitely changed him and contributed to some of his 'non-terrible two-ness' and so in that respect, I do feel sad that he is not crossing his little arms and pitching a massive fit at me.

I have written a lot about Max's neurological issues from the beginning.  And I have tried to be candid about it being a struggle, while at the same time wanting to represent the hope we have for Max and our tremendous love for him.  It has at times been a hard balance to strike and sometimes I feel I should err on the side of being very positive because people want to know that you are okay and I want to publically celebrate Max's journey and all the good we see God doing in his life.  So while I am sure I have acknowledged that it has been hard, I have not written a lot about the sadness that has been in my heart since finding out about Max a little over a year ago now.  A sadness that is still there.  I carry a lump in my throat and a pit in my stomach for Max.  I get distracted, I have breaks from thinking about it, I get busy at work or caught up with Addie and it goes away.  But when I think again about Max, or I spend time with him, the lump and the pit would come back.  Part of the sadness comes from all the emotional drama associated with finding out. We thought he was getting worse, we feared his time with us was limited, we doubted he would be able to be transplanted, he had discussions about DNR (do not resuscitate) orders. Although Max's delays had been apparent for some time, it seemed to become so serious so quickly.  And it broke my heart.  Everything we had imagined and hoped for Max seemed to fade away and was replaced with so much fear.

And it coincided with a really unhappy stage in Max's life due to a hernia and reflux and lots of dialysis. He was miserable and we felt so sorry for him, for what he was enduring now and for what his future was going to be.  We still tried to find the good, we still tried to be positive, we still adored Max and loved him and our time with him... but everything was tainted with sadness.  For a long time really. Even after the initial fears and terrible concerns began to fade and we found new hope with transplant and he got happier after his surgeries for his reflux and hernia, there was still sadness.  It was less constant and less gut-wrenching but it did not totally go away.  And Addie started doing more things, specifically walking and really understanding us and playing with her toys in new smart ways.  And as we rejoiced in these new steps for her, our hearts were sad for Max not doing any of those things.  I would hold him and just feel so heavy hearted and sad for my sweet baby boy.  It was and is a sadness I do not feel for Addie.  I have moments of feeling sad or sorry for Addie.  When I think about everything she has been through or about her future challenges, I can certainly cause myself to get melancholy. I certainly worry about Addie.  But there is no lump in my throat for Addie.  Sadness is fleeting with Addie, it does not settle in down in my stomach like it does for Max.

With the sadness comes its own guilt and philosophical pondering.  I wonder if I am feeling sad for myself and for my future that now looks so different.  Which definitely makes me feel bad because that seems selfish.  But I do think there is an element of it that is grieving for myself or for my family more generally. For the milestones that I used to look forward to- like the kids going off to school- which now seem daunting. For the fantasies and daydreams that I have long held that no longer look the same.  For the added stresses, financially and in my relationships.  Right or wrong, I think that sadness is there.  But it is getting better.  I think Al and I have both reached a point of really accepting a new normal and a new future.  I know that if I could trade Max for a healthy different baby, I definitely would not.  I love Max so much and want him in our lives for as long as possible.  Even if that means different dreams and different plans.  And Max is a huge blessing.  If the 'worst' is true and he does not really develop much then that would mean I will always have my angel snuggle bug baby and instead of dealing with all the teenage histrionics that I know we will have with Addie, I will keep my innocent precious boy as perfect as he is now.  Looking at it that way, it seems foolish to feel sad for myself.

Where the sadness still is strong is feeling sad FOR Max. Not because of him, because no doubt he is making me a stronger and better mom, but for the difficulties and limitations he faces.  I want him to be able to explore his world and I want him to be able to discover the silly joy of getting into things you are not supposed to, like Addie's face when she finds a bathroom unlocked and she can throw Cookie Monster in the potty and laugh her crazy happy laugh.  I want him to be able to talk and tell me about how he feels and what he likes.  I want him to be able to eat junk food and demand McDonalds' for dinner.  I want him to have friends his age (because he already has more nurse girlfriends than anyone I know!) that he can play hide and seek with and dig in dirt with.  I want him to someday be a teenager who gets in trouble for texting his girlfriend from class or gets disappointed when he doesn't make a sporting team he tried out for.  I want him to live independently and get married and act as excited and adorable about it as his Uncle is at the moment.  I long for those things for Max because they are the wonderful joyful things in life.  They are what make me happy, what makes Addie happy, what makes other people I love happy.  And so because I want happiness for Max, I want those things for Max.  And so faced with the reality that most of those things are very unlikely to happen for Max, my heart hurts for him.  I feel sad because I want more for Max than his body may limit him to.  And that is the sadness that gives me my lump and my pit.  That is the sadness that sometimes hits me unexpectedly while watching Addie play or while teaching healthy happy teenagers. 

In my head, I have a lot of reassurances for myself.  I know that for many people happiness does involve running around, exploring independently and talking freely and eating easily.  Because those contribute to my happiness it is easy to think that they are necessary for happiness.  But that is not true.  Max is so happy.  He does not seem to be frustrated by his disabilities.  Maybe if he does develop more cognitively, he will become frustrated which could be a blessing and a curse. Maybe he will never really develop a true understanding of his limitations and this naivety could end up being God's greatest blessing to him.  Either way, right now we have a happy boy. And I know Al and I will do everything we can to ensure he has a life full of love and laughter and every bit of happiness we can provide. So if he is happy, why do I need to be sad for him?

Then there is my fundamental but somewhat conflicting belief that God makes no mistakes in making us and that therefore Max is perfect.  Just as he is.  He is exactly who he was meant to me.  If I start to think about this a lot, my head starts to hurt.  And I start to question if I can separate how God made Max and the event that caused the brain damage.  Can I think that Max is perfect as is and yet still hate that he experienced that trauma?  I tend to think so but I certainly do not have all the answers... I just keep asking God my questions and returning to my core fundamental belief that Max is not a mistake and he has a tremendous purpose... just as he is... bad kidneys and CP included.  So again the question- why do I need to feel sad if I KNOW he is who he is meant to be?

Finally on top of all of that, I also know in my head that MIRACLES HAPPEN.  I have witnessed many.  And Max's story is far from done.  So while I accept that he may very well never walk or talk and have significant cognitive disabilities and I am in no way in denial, I also know that forever is a long time away and that things could change.  Dramatic sudden miracles could happen, or more likely some gradual slow but significant miracles can happen.  I remind myself all the time that I really do not know what Max's future has in store.  So... really I shouldn't be sad about it.

Some days it is like a little mantra in my head:  Max is happy, Max is perfect as he is, Miracles happen.  And I tell myself these things over and over.  And it helps.  I am glad I have that logical grounding.  But honestly I will tell you, the sadness is still there.  All the knowing this in my head hasn't managed to evict the pain from my heart.  Mantra and all.  It still hits me.  Something he does, something Addie does, something another parent says, a teenager (or even worse an adult) using the word retarded... in so many different ways and despite my best intentions to BE POSITIVE, the sadness still hits me.  And I still spend a lot of time with that lump in my throat and that pit in my stomach.

And you know, I have just decided that is okay.  I have a friend who is going through something similar with her son.  And I told her the other day in a text that I am learning that heartache and hope are not mutually exclusive and that joy and sadness can co-exist in the same second.  My journey as Max's mom is changing me every day.  It is making me stronger, it is making me braver, it is teaching me priorities, it is teaching me the depths of my love.  It is a source of great joy.  And it is a source of great pain and sadness.  It is both.  Simultaneously all the time.  And that is just how it is right now.  I will say that it is much better than it was a year ago.  The joy and hope are stronger, the despair gone and the sadness less suffocating.  I am happier, more at peace and stronger for this last year as Max's mom.  I have come a long way through time and prayer and love from family and friends.  I came a long way in one month in December when God showed me in a huge way just how much I need Max in my life.  He reminded me of something I always know but sometimes forget... that at the end of the day, I just want my babies alive.  The rest I can figure out.  And so I am giving myself a 'get out of guilt free card'... allowing myself the freedom to feel sad for my own future sometimes, to feel sad for Max, even when logic tells me not to.  But also the freedom to enjoy those moments when his disabilities make him that extra bit more lovable or our home that extra bit more peaceful. I'm trying to not second guess my feelings all the time or feel bad for them and overanalyze them.  I'm on a crazy difficult journey and I am hanging in there and getting stronger every day and all the feelings that come with that are okay. 

This is more than I have ever really shared on my blog before.  But I wanted to share it.  Because it is real and honest and where I am at.  Because I have started realizing that people with sick kiddos read this blog and I want to say that the sadness is real but doesn't mean that there isn't joy and hope.  And because I wanted those of you reading and following our journey to keep praying for us.  For Max, of course.   But also for me, for the joy to outweigh the sadness and for the grace and strength to keep smiling on the days when that lump is there and everything does feel sensitive and sad.  And I will keep sharing our wonderful journey with our terrible two princess and our terrific two angel!

Our New Normal

As most of you probably know, Max and Al returned home last Friday afternoon.  We had been holding our breath and hoping but not wanting to 'get our hopes up' at the same time for about a week.  We knew it was possible, then it started looking likely but I will tell you that it was not until I got the text that they had boarded the plane where I really believed it was happening!!  They came home, and Al's sister Emily came as well to help get everyone adjusted to our new normal.  It was a wonderful weekend, Max was so smiley, he was talking and cooing away at Addie (who basically ignored him) and we had fun just all being together again.  I was sitting around the table on Saturday morning eating hot Shipley's donuts with Addie in her high chair and Max in his wheelchair and everyone smiling and I just kept thinking, this is what we have been dreaming of, this is what we have been working towards and it is here, and it is wonderful!

We have spent the last two years looking to transplant as our goal and our hope and it such a bizarre and wonderful feeling to be there, to have arrived as this long awaited for end point finally be here.  This is a poor analogy and I would hesitate to use it had Al himself not used it many times... but it is kinda like preparing for a wedding.  It is so much preparation, something you have been planning and dreaming of and organizing for such a long time and then it happens and your life changes and you come home from your honeymoon and you think 'ok we are married! wow, now what?' and you start figuring out the reality of what exactly will daily life look like now and what do you spend all your time thinking about and planning and obsessing over now that the big event has passed.  Now I would like to put a disclaimer on this comparison that my wedding day was the happiest day of my life and the most beautiful memoral wonderful experience and in no ways really similar to the terrifying, stressful, sad experience we had watching Max suffer on the ventilator for days in December with his transplant.  You walk away from a wedding with precious memories and images you try to hold on to and we walk away from this transplant with a fair amount of post traumatic stress disorder and a lot of images we long to forget.  BUT, both were life changing and wonderful important changes and the comparison is just to say that we are in that place of figuring out a new wonderful normal and not knowing exactly what to 'plan' next.  And just like a newly wed couple quickly relaxes into the calm of not having anything to plan, we are adjusting to this novel exciting idea that there are no big surgeries, no crises awaiting and that we can just live in the moment and enjoy our time together and just live each day without the need to work towards something.

There are so many wonderful things about having no one on dialysis.  It feels so freeing to be able to plan things without considering how it will impact dialysis.  We have freed our house of so many medical supplies that it almost looks like a home and not a hospital again!  There are just less things that can go wrong, less problems to watch for.  And much more time together, and more smiles and happiness.  Transplanting Max and Addie was the best decision we have ever made.  We said going in 'No Regrets' and Al and I reminded each other of this when the days were hard either with Max being sick or with us just missing being together.  We were committed to not regreting our choice and to not blaming ourselves if the outcome was not everything we had ever dreamed it to be.  So we were determined not to live with regrets no matter what but I can tell you that it was been totally wonderful, worth the efforts and the expenses and the separation and the losing of organs.  Worth it all.  The babies are happier, our family is happier and it was the best decision we could have made. 

I will say that our normal still does not resemble any one else's normal.  In part because as a transplant recipient, the babies do still have some medical concerns.  So they have to be watched more carefully and get labs and have their blood pressure monitored daily.  So while they are 'healthy', to some degree they do still have a medical concern so that is still part of our life.  Take today for instance... I wake up to Max coughing, sounding like he wants to throw up and generally seeming miserable.  I sit with him for a while trying to comfort him and pretending to be a doctor trying to diagnose him.  Once Emily gets up to hold him, I then go to check on Addie who is still asleep.  I realize when I check on her that her bed and PJs have blood on them.  I panic, check her diaper which seems to be full of bloody poop.  Addie has been dealing with either pink eye or an ear infection for weeks and just yesterday went on a new antibiotic so I am wondering if it is a reaction to that or you know some new medical issue just waiting to enter our lives.  I clean her up and take pictures of the diaper and store it in a Ziploc, feeling sufficiently disgusting.  I text her nephrologist and then head off to work leaving Al and Emily with this handful.  I get there and touch base with our dr and my mom comes to get Addie and take her into the hospital.  A few hours of worrying later and it is determined that it is not blood but rather a very rare strange side effect to the antibiotic whereby it turned her poop red. A benign side effect, other than the heart attack it nearly gave me this morning!  So my mom brings Addie back home while Emily and Al try and soothe Max, checking his temperature with neurotic frequencies.  Around 2pm someone from Medicaid is due to arrive to assess Max for help with daily living based on his disabilities so they are preparing for that interview.

And that is today's drama.  More dramatic than most but not completely out of the ordinary either.  It's a busy dance with hearing aids, patches, feeding tubes, wheelchairs and all kinds of things I never imagined in our daily life.  But we are getting the hang of things, some more quickly than others.  Addie's hearing aids are surprisingly easy now... But she still isn't talking.  We are excited to move Max out of the living room since he is no longer on his machine... But realizing that as he is so heavy now and still unable to support his head and therefore most difficult to carry, that upstairs is not really an option so we are trying to figure out where to settle Max in.  I won't say they are small challenges because they are not.  In some ways dealing with their disabilities is more challenging than dealing with kidney stuff.  Less terrifying but more upsetting. But at the end of the day, although these issues can make us worried or sad, they are not life or death issues.  The babies are healthy and for the most part happy!  They have overcome tremendous obstacles and we stand amazed at where they are at.  And we feel lots of hope!  I have meant to write a post one day about what Dr Google has to say about Congenital Nephrotic Syndrome... but to make a long post short, the odds were stacked against Max and Addie still being here with us today.  Much less being so happy and incredibly cute :)  So while our life is not and never will be easy or normal and while we still deal with things that to others may seem incredibly difficult, we are happy to be here and are genuinely enjoying our new normal life, even on the days when it includes red poop and drama galore!

Happily Ever After

In my book I have been writing in my head, the final chapter, the conclusion, the happily ever after has always been planned to be Max's transplant. Definitely far from the last chapter in the story of Max and Addie's lives but for the specific story of their kidney condition, it seems as neat of a conclusion as you can get. I was all excited about our happily ever after 3 days after surgery when I was talking to the media director from the hospital and daydreaming about what I would wear when I appeared on Ellen. Max was going to be home for their birthday and I had grand plans for this perfect final scene of the twins reunion at the 2nd birthday party. We were looking into having the news come and cover it. Happily ever after seemed just around the corner. And then Max got sick. Not like normal kid sick. Not like oh some throwing up or a sore throat sick. Bad, bad sick. Like would not have survived if a machine had not taken over and breathed for him for a week sick. Like got so upset by the life saving machine that he would clamp on it and nearly not let the machine continue saving his life sick. Like his brand new kidney stopped peeing and his tummy stopped digesting sick. Like had to be on so many sedative and narcotics that he developed dependency and went through the most awful withdrawal I have ever imagined sick. Bad, bad sick. And happily ever after started to seem very very far away. I stopped thinking about Ellen and my book tour and just started praying day and night that Max would survive, that his new kidney would survive and that Al and I would stay strong enough to hang in there while dealing with some really heartbreaking and terrifying stuff. And God heard all our prayers and Max did survive, again and again, he survived scary life threatening situations. And his kidney did great and is working amazingly well again. And even though leaving Max and coming back to Texas to work was the hardest thing I have ever had to do, Al and I both made it through to this day without completely losing our sanity or sense of humor. And Friday night, happily ever after arrived. Max got to go 'home'  (to the apartment in California) from the hospital after 46 nights there. He is going home off dialysis, off oxygen and smiling and happy. I will admit that the true closure and deep happiness of that milestone will be a bit delayed for me because I am not there and I think it won't be until I go to California in a couple of weeks and see for myself how good Max looks that I will really truly embrace the happy ending. But my delayed gratification aside, we are thrilled to have made it to this point and so happy that this story is getting its happily ever after.

Most of you who read this already know the background but we found out just over 2 years ago that Max and Addie would both need kidney transplants. We also found out it would be a while before they could have them. And so this happily ever after of them both being transplanted has been in our plans and on our hearts for two years. And it felt so far away so many days. When Addie first went onto dialysis and went almost immediately into heart failure and stopped breathing, we did not know if she would get to transplant because her heart was suffering so much. And then miraculously she got better, quite quickly and very completely. Then a few months later when she lost her peritoneal dialysis ability and had to go on Hemo, we wondered if her body could handle that and if the months of Hemo would compromise her ability to transplant. But last May, Addie got my kidney and her life turned around in an instant. The sick complicated baby girl who created medical complications that the doctors did not even know existed is a happy healthy 2 year old. Meanwhile as we prepared for Addie's transplant, we faced the very real possibility that Max would never be transplanted due to what seemed to be a progressive neurological condition. We feared he would not survive long enough to transplant or that if he did, his case would just be too complicated. But Addie was an amazing sister and led him to the perfect team who embraced his case with open arms. And suddenly our dream, our goal of them both being transplanted was back to being our reality. God moved mountains for us to arrange a second long California trip in a year and Max got his dad's kidney. And within about 8 days of the transplant, he was so sick he was on a ventilator and the head kidney doctor came to tell me that they were looking at starting Max back on dialysis the next morning because his kidney had stopped working. It was a terrifying night and I worried and cried and doubted Max would make it through this without at least losing the kidney. But the next morning came and he started peeing again. And the next month pretty much went like that- 2 steps forward, one back. He got within an hour of being released a couple of weeks ago and then spiked a high fever and the next day they found a staph infection and he was very sick again and ended up spending another week in the hospital. But through it all, he stayed strong and kept smiling and he is now very well and he did finally get his happily ever after.

We are so thankful to be at this point. For the journey to transplant to be complete. We thank God for protecting Max and Addie's lives time after time. For leading us to doctors who knew how to take care of them. And I am thankful that at every crisis and every turn, God took care of Al and I. I never walked through a terrible day alone. He always provided someone to hold my hand and provide the support and love I needed. Even as we faced long difficult days in California with my Addie and my parents so far away, he provided very special friends for me in California who took amazing care of me. Our parents have given everything to help us and to get Max and Addie transplanted, our extended families have given us money, love, and neverending support. We walk away from this 2 year journey victorious but with a lot of battlescars, all of us. We carry physical scars and we carry emotional scars, but we also walk away stronger and filled with great gratitude to God for the lives of our precious children, for every wet diaper we change and for the people in our lives who have shown us unconditional selfless love and carried us through to this point.  We are so thankful for this happily ever after (but stay tuned as this is far from the end of this blog or the end of the miracles God has in store for Max and Addie!)

Some photos of Max's last day in the hospital...

With Addie and I back in Texas, Max had the Australia crew with him...

One of my favorite Max pictures ever, courtesy and Aunty Em

He certainly does not suffer from lack of love does he?!

2012, The Year of the Transplants

There is so much to say and I have like 5 blog drafts started about everything from their birthday to Christmas to explaining more about what is going on with Max.  It has been hard to finish anything because things seem to change a lot with Max so it has been a pretty stressful time. And I KNOW there is no such thing as 'jinxing' but I do feel a bit like every time I post on Facebook and say Max is better, he has a set back so I have been a bit hesitant to write anything on my blog.  But here we are on the first day of 2013 and I thought I should quickly take a moment to be thankful for the miracles we have seen in 2012 and that although we did not end the year quite like we would have imagined or wanted, we did end the year with two beautiful two years who are off dialysis and peeing and we will always look back on 2012, the year of the transplants, as a wonderful year for our family.

At the start of 2012, Addison had just finished a 3 week hospital stay that resulted in her having to come off peritoneal dialysis and go on hemodialysis.  She had lost a lot of weight and was recovering but definitely facing some very real risks and obstacles.  We knew she had hearing loss and needed to work on her eye but in the face of her acute renal issues, all of that seemed some far in the background.  She had turned one and just started army crawling.  If you saw her today, you would never be able to guess any of that.  She is the happiest most adorable two year old who is healthy and thriving.  She is so amazing, she wears her hearing aids all the time and if one buzzes or comes out of place, instead of ripping it off like she did a few months ago, she actually puts her hand up and fixes it herself.  She wears her patch without resistance and her eye is so much better.  She will have a day surgery to fix it more permanently in a couple of months and that issue will be behind her.  She walks everywhere, tries to run and jump and has this adventerous little spirit.  She is starting to discover words.  Medically she ended 2012 with a great biopsy report that her kidney is working brilliantly and all her labs have been excellent for months now.  She is truly healthy.  And happy and so loved. 2012 was a miraculous amazing year for Addie.  I will never stop being grateful for the year I got to give Addie my kidney and see her life turn around before my eyes. 

As I write this post, I am sitting in the PICU next to Max who is today 3 weeks post transplant. I had assumed he would have long been home by now (for reference, Addie was home at 8 days post and out of the PICU at 3 day post... so while we knew he could have a harder time, we were never expecting this).  At the end of 2011, although we knew Max had delays, we had not yet done an MRI and so we really had no idea what was in store for us there.  So 2012 was a very emotional year for us both as we spent the year on the quest to finally settle with a CP diagnosis and then as we explored whether we would transplant Max and then finally did, only to have the unexpected hurdle of an RSV infection.  But while 2012 was difficult for Max, I do not want to ignore the many miracles that happened for him this year as well.  In February of this year, Al and I sat through an awful meeting with a team of doctors and were told that they suspected Max has a neurologically progressive condition that would result in him losing all his abilities and significantly shorten his time with us.  We were told the chances of transplanting him ever were very small.  And yet, here we are on the first day of 2013 and Max is alive, he is very much aware and interactive.  We know he has cerebral palsy and will need a wheelchair but we also know there is no limit on what he will be able to think and how he will be able to interact with others.  And most significantly, he has his Daddy's kidney inside of him and he is peeing and free of dialysis.  He is still fighting RSV and not well yet but I do believe the worst is past us and that from a very scary and terrifying couple of weeks, he survived, his brand new kidney survived and is working well and he is slowly, but I do believe surely, going to get well and come home better than ever.  So 2012 has not been an easy year for Max, or for us as his parents, but it has been a year of great miracles nonetheless. 

Please keep praying for all of us.  At some point, I will write more about what all has happened these past three weeks. I haven't been ready to really talk or write about it yet but I will.  It has been very up and down and Max is still on a biPAP machine to help him breathe so he really needs prayers for complete healing.  Al is doing really well.  You would never think he had surgery 3 weeks ago, he is just doing awesome.   Addie is still here with us and bringing so much joy to us all.  She is spending the mornings with Al and Al's parents and loving her time with her grandparents and then I leave the hospital in the afternoons to spend time with her and she makes me so happy.  I could really use some extra prayers this weekend as I have to go back to Houston with Addie on Saturday.  I have to be back at work on Monday.  I never imagined leaving my baby in a PICU in another state.  But for a lot of reasons, there doesn't seem to be another option so please pray for peace for me, and stability for Max and that my time away from Max will seem short and and not as painful as I fear.  I will be coming back for a weekend to see the boys in a few weeks and we hope they will be home in late February.  Al's family will be with him the whole time. 

Thank you all for the way your love, support, prayers, generosity and interest sustained us through 2012, especially admist our two big transplants.  We feel very blessed that we did not walk alone through the highs or the lows of last year and look forward to what we hope to be a less dramatic and eventful and more healthy, happy and stable 2013.

Some photos from the last month...

Adorable Birthday girl!

With my baby girl on her birthday

Opening and Playing with presents!

Her Abby Cadabby balloon was bigger than her!

Cuddles with mommy

Max's first post ventilator smile, appropriately given to his Daddy!

Thankfully he saved one for Mommy too!

Last week during one of his really good days, love his precious happy face!

Today (01/01/13) post set back on his biPAP, rosy from another blood transfusion

Brushing her hair!

With Adam and Jenny, loved spending time with family this Christmas

Slides are so much fun!

Please pray for Max.

I have been updating Facebook because it is a lot easier but I thought I should quickly update my blog since some people read it and not Facebook.  I don't have a lot of energy or eloquence tonight so I am just going to explain the situation as best I can.

Max has been having a lot of 'secretions' (snot, mucus etc) really since come off the ventilator initially but it did not seem to be compromising his breathing.  We thought it could just be related to having had a breathing tube down his throat or from increased fluid needed to maintain his new kidney.  He seemed ready to come off his ventilator and was breathing all on his own with just a canula to give him some extra oxygen this weekend.   On Sunday we started noticing that he seemed to be working hard to breathe.  He kept his oxygen up but it seemed like hard work for him.  We weren't sure really what was wrong and hoped he just needed to pee off more fluid.

At the hospital they can very quickly check Max's blood and see how much oxygen is in it, how much carbon dioxide is in it and what the pH is and they have set parameters for what they want those numbers to be.  Through the weekend everything looked fine.  But Monday morning, the amount of carbon dioxide in Max's blood was creeping up.  And it continued to increase and reached too high of levels, regardless of moving him to CPAP, a machine that gives him more oxygen and support.  He was just not able to breathe effectively enough to keep his blood at the levels it should be.  So they went ahead and put him on a ventilator.

Initially after surgery he was on a ventilator to heal and as a precaution.  Now he is on a ventilator because he couldn't breathe on his own.  Which is an entirely different and much more serious situation. 

We weren't sure why this change had happened.  Until we got the positive RSV test back, which really makes it good news because we know what is wrong now.  RSV is a respiratory virus with cold like symptoms like runny nose, congestion and lots of mucus.  You have probably had RSV and as an adult you would just have a yucky cold and go through a lot of Kleenex.  But on smaller children, it can cause so much inflammation and secretion that it blocks their airways and prevents them from breathing effectively.  It is most dangerous for children under 1... or kids whose immune systems are compromised, like Max. 

So Max will likely stay on the ventilator for a few days while we wait for the infection to clear up, which will take longer than normal due to his weakened immune system.  If he has a machine breathing for him, we do not have to worry about his airway getting blocked and him stopping breathing.  The two concerns while he is on the ventilator are that we manage his sedation and prevent him from getting upset and actually clamping down and blocking his vent as he did earlier today.  And that the secretions in his upper airway do not end up in his lungs causing him to get pneumonia.  So we pray that he doesn't have any further complications from the RSV and that it will just be a matter of time and patience waiting for his body to heal.  We are also really keeping a close eye on his kidney, which has done better today, and praying that it does not get damaged while he is sick and his blood pressures are lower than ideal.

Addie is still able to come out as thankfully she recieved an RSV vaccine.  She will not however be able to see Max so we will be doing separate birthday parties.  I am just so relieved I still will get to see her.  We could really use a dose of Addie sunshine.

Thank you all for praying for Max and for the continued love and support.  The texts and emails and Facebook comments have really encouraged me today.  If you shared this link asking for prayer for Max for his surgery, please feel free to share again as he needs prayer very much right now. I will mainly be updating Facebook but will try to keep this blog updated as I have new news also.