Friday, November 30, 2012

Finding my Voice through Blogging

Well it is November 30th and this will be my 25th post for the month... which given I had only written 17 for the whole rest of 2012 is quite impressive.  I decided to do this whole blog a thon for a lot of different reasons and some nights I found it hard and by the end, I just had to give myself some nights off but it has been a really good experience.  It has helped me to process my thoughts during a busy and emotional month and it has made us feel so much less alone and more surrounded with love and support.  So I am really glad I have blogged so much more and while I won't be putting any pressure on myself to write daily posts now, I will be keeping it pretty up to date through Max's surgery and all the adventure that the next month holds.

A big part of writing this blog for me, on top of keeping people informed, has been about finding my voice.  When I started the blog over a year ago I knew I had a unique story and I was already starting to see that I had children with ongoing medical and developmental needs... but I had not really embraced the idea of myself as a 'Special Needs Mom'... the magnitude of everything had not yet been revealed and I was seeing it more just as a way to update medical info.  Now a year later I have one child with mild to moderate hearing loss and major eating issues and another with severe CP and immobility and I know that I have a distinct role and voice as a special needs parent.   And I'm working on finding my voice and figuring out how I want to use this role that God has placed me in.  Of course there is figuring out how to actually be Max and Addie's mom and meet their needs but I also feel there is a public role to it.  Perhaps because I am a teacher, I know I want to teach other people about Max and Addie, I want to educate people about children with disabilities, I want to advocate for my children and for others like them and above all else, I want to use my words and my story to show everyone how beautiful and amazing and strong Max and Addie are.  I want to make sure that people who see them see through the eye patches and hearing aids and delays and can see their precious hearts and strong heroic spirits.

My voice is still a work in progress.  I haven't even worked out exactly what I want my message to be.  I know I won't ever be the person who says I am glad that my children are/were sick because I still know that if I could snap my fingers and give Addie back her hearing or give Max the ability to walk, I would.  But not because I want them to be any different or see them as anything less than perfect... just because as a parent I would want to take away their frustrations and difficulties and needing hearing aids or being wheelchair bound are difficult things for a child to face.  So I don't relish or celebrate the disabilities.  But I don't resent them either.  I'm not angry or jealous and I don't waste a lot of time living with 'what if'... my children are exactly as they are meant to be.  And they face things that are sad and hard but they have also been blessed with these amazing fighting spirits and they have so much resilience and joy and I can also see how even at their young ages, what they have been through has shaped them into more amazing little people.   So I am not sure what my message is other than I'm thankful for Max and Addie not because of their disabilities nor would I say in spite of them... I just love them like any parent loves their child, exactly as they are.

And I'm not sure to what extent I will decide to be an advocate for children or people with disabilities.  I know I haven't really explored that role a lot yet but even without consciously deciding to take on certain platforms, my experiences have changed me and change how I see things.  I know that a couple years ago I would have hardly noticed when one of my students uses the 'r word' and yet now it feels like a punch in the stomach so I do stop and explain why they shouldn't use it.  It's not a deliberate goal or agenda, it's just that my children have changed the way I look at the world.  And so maybe I will get to use my experiences to help raise awareness and appreciation for causes for other children and adults living with mild or severe disabilities.   Maybe I'll get involved in programs or fundraising or support groups.  Maybe I'll write a book. People do tell me I should write a book a lot and I would love to.  I spend a lot of time fantasizing about my book tour and appearing on Ellen!  So maybe my voice will get a chance to spread.  And I will get to share Max and Addie's story with more people and make some sort of differnece.

But for right now, this is where my voice has found its home.  On this blog.  Which amazingly hundreds of people read!  It's my place to share my journey, to show off my beautiful babies and to open up our lives and let people know more and pray more.  And as I develop and settle into my life long role as mom to two incredibly complicated and adorable and amazing little people, I hope I can continue to grow in how I write about and explain our journey.  So thank you for reading my thoughts and for showering us with support and love and understanding.  It's such an intangible concept by this blog feels like a part of me and it's been such a blessing to be able to share that with all of you. 

Thursday, November 29, 2012

Tube Feeding and our Pursuit to find a food Addie likes...

A few weeks after transplant, I posted a photo on Facebook of Addie eating a Frito with all this excitement that hooray Addie was eating!  At the time, it seemed like huge progress that she was eating a Frito and playing with food.  Now 6 months later, it seems like it might have been a passing phase and I almost wish I hadn't posted the Frito picture because everyone seems to think Addie eats now.  So to clear up any misconception... Addie is 100% tube fed.  She gets all of her daily nutrition and daily hydration from a feeding tube that has been surgically placed into her stomach.  And while I understand that this is less than ideal and that for a parent whose child eats, it probably seems sad. I suppose it is in a way.  But I will also tell you that I am so incredibly thankful for Max and Addie's g tubes.  They are saving their lives, saving their kidneys (well hers now and his soon), and saving a lot of fights and battles that we just do not need to be having right now.

Feeding has been one of the biggest stressful things in our babies lives.  Preemies of course do not eat so we started the tube feeding process as soon as they were born.  They had NG tubes when they were little which are tubes that actually go down their nose and throat into their stomach that way.  NGs are less invasive because they are not surgically placed and they are more temporary so they work really well for little babies who do not pull them out or fight them and who we expect to start eating.  The process of getting Max and Addie to eat on their own and not feed the NGs was long and at times, difficult.  Addie actually did quite well and was eating all on her own a few weeks before her due date which is good for a preemie, especially one who had been quite sick and had some hiccups.  I actually got to nurse Addie for a month or so until the number of meds and supplements needed in her milk just got to the point where pumping and then bottle feeding made more sense for her.   Max took longer to eat on his own- he needed an NG tube until one month after his due date and he ended up having to drink thickened milk.  He choked or aspirated thin milk due to not having a strong well controlled swallow but could handle milk that was more like a honey thickness.  So it was a challenge with both of them but they did learn to eat independently.

Itty Bitty preemies with feeding tubes

From late March- late July both babies drank bottles and got all of their nutrition from eating.  It was still this big source of stress because the NICU follows everything so carefully and we had to add up what they ate and worried all the time about them getting enough.  Neither of them were ever enthusiastic feeders so we seemed to always just barely get them eating enough.  But they did it.  And then we started talking about dialysis and we were warned they would stop eating.  Apparently the dialysis fluid in their belly makes them full and uncomfortable and not having kidneys causes a loss of appetite.  But we were all like 'no not our babies! They will eat!'  I mean they had been eating for months, why would they stop?

But of course they did.  About one month in dialysis.  It started getting more difficult almost immediately and then just progressively got more frustrating for everyone.  We would make the babies face a corner and try for an hour to get them to eat and they would eat maybe 5ml, while crying and fighting.  We really hated to go back to NG tubes, it felt like this backwards step.  But we had to or they would starve. So in late July the NG tubes came back.  And pretty quickly we stopped the force feeding and they got all of their formula through their feeding tubes.  It worked well for making sure they got all the medications and milk that they needed to grow and stay healthy.  But NGs are also difficult for a couple of reasons.  For one thing, they are taped onto the face and I never really got over hating that they made the babies look sick.  And people would stare and little kids would point and I didn't want all of Max and Addie's baby pictures to have tubes making them look sick.  So we took them out a lot.  And also the babies worked out how to pull them out themselves.  So we had to do a lot of putting NG tubes back in.  Almost every day for Addie and probably twice a week for Max. And having to hold down your baby and stick a tube down its nose through its throat is so unpleasant and sad.  And Max particularly hated it and we had several traumatic experiences where he would stop breathing when we placed the tube and not re-start without resuscitation. Putting in their feeding tubes was one of the worst parts of our day.

This thing up my nose is really annoying me!

Then in February we had the opportunity to get more permanent feeding tubes placed in their stomach.  They could not get these while on peritoneal dialysis as the abdominal surgery would disrupt their dialysis but since they were both on Hemo at the time, we had a chance to do it.  And we jumped at the chance.  And it was far from easy.  Max spent four weeks in the hospital on Hemo (he would have been there for some of that for his hernia repair but probably half as long) and Addie had a terrible reaction to anaesthesia and was in the PICU for 4 days on a drip for hypertension.  So getting their g tubes was quite a drama... but also totally worth it!  No more tubes on the face! No more having to put them back in (well, less having to put them back in at least) and no more sticking things down their nose.  They can still recieve their feeds and meds via tube feeding without those issues.

Here are some pictures I found online of g tubes (i am not including a picture of Max or Addie's g tube because I don't know how they would feel about that down the road and some people do find it a bit sqeamish so I figure a diagram is better)

This picture shows how small the g tube is.  It is a tiny plastic thing that you put in deflated.  Then once in you fill the little balloon bubble with water and it holds it into place- nifty!

So for now, Max and Addie can both get all the nutrition and water they need through their g tubes.  We give Addie 12 60ml 'boluses' or syringes of food throughout the day.  She cannot go more than 3 hours without more liquid for her kidney right now.  Then overnight a pump feeds her for 10 hours at a slow rate. She gets about 1.5L a day.  Max will follow this routine after transplant. We would love to see her eating more of her calories through food and drinking more water on her own but right now, it's just not happening. In theory she should have an appetite again and she is certainly capable of eating, she just has learned not to. Because of needing to keep her kidney hydrated, I don't think she is ever really hungry.  So she doesn't think she needs food and for whatever bizarre reason, she doesn't seem to find it tasty so she doesn't eat. She understands the social concept of eating and sits with us and puts food up to her mouth, takes bites even, and then spits them back out and continues this process of 'fake eating'.   We have tried all kinds of delicious foods too! We try ice cream, cheetoh puffs, fruits, crackers, icing, pudding, cheese, bread etc.  She actually will lick icing off her fingers some and licked Cheetohs but actually eating, yeah still not really happening. 

Chocolate pudding sure is fun to make a mess with! Eat it? No thanks.

I prefer my food to come from a feeding tube... yes, she will actually drink milk from her feeding pump but not from a cup.  What an adorable little strange child she can be!

One day Addie has to eat and I believe one day she will.  I actually am really excited for some good peer pressure to kick in- I figure one day she will understand that everyone else enjoys food and maybe join in for sheer desire to fit in.  But we are a while away from that.  I'm not sure how we'll get her to eat.  I've read about these like hard core summer camps for making kids with g tubes learn to eat.  Maybe she'll just get it at some point, maybe it'll take extensive therapy.  Not sure.  But what I do know is that it isn't our biggest problem right now.  Her g tube is making sure she gets plenty of food and water and it also makes giving meds really convenient and safe.  So for where we are right now, we are thankful for her g tubes and thankful for tube feeding.  And for Max, I imagine we will keep tube feeding him for quite a long time because of his weak swallow so we are even more thankful that such an option exists for him. So, even though feeding issues have been quite stressful, right now we aren't getting super worried about it.  We are happy they are staying healthy and we'll figure out the rest as we go. 



Monday, November 26, 2012

Before the milk expires...

Yesterday Addie and I went grocery shopping and when I picked out the milk, I noticed that its expiry date was December 12.  And I realized that is one day after Max's transplant.  Which means that before our milk even expires, Max will have a kidney and our dialysis experience will be over.  It was a pretty amazing thought.

When Max transplants, we will be just shy of 18 months of having a child on dialysis.  And the 6 months prior to them starting dialysis they were in the NICU getting long albumin infusions much of the day.  This has been an incredibly long journey.  For 6 months we have been halfway there and soaked up every moment of Addie being free and safe and healthy.  But we have still had sweet Max on dialysis so while we have rejoiced for Addie, we have not been done with dialysis and our family has still be in the throughs of it.   But in two weeks now, we will have 2 children off dialysis.  It is so soon which is just so hard to even believe and so exciting.

Of course there are a million things I need to be doing between now and then... and of course it's going to be harder and scarier before it's better... BUT you know sometimes you just have to ignore all that and just choose to relish in the joy so for today I am just so happy that before my milk could even go sour, my family will be free of dialysis.  Wow. 

One of my favorite Max photos...  how much does that perfect face make you so happy he is about to be getting a kidney!!!


Saturday, November 24, 2012

Cerebral Palsy: Moving on from WHEN and accepting WHAT

For a long time on my blog, I've been using one of several awkward phrases in describing what is going on with Max including 'neurological condition', 'brain damage' or 'motor issues'.  I haven't really known what to call it.  I felt we had no real closure on what really happened or what it was, I felt we were still in this search to find a label and as such I couldn't think of any easy way to sum it up.  You may have noticed this past week I have started using the term 'cerebral palsy' more and from now on I will be using that term in place of the other awkward ones because after our meeting in California, we feel quite confident that we know what Max has.  It wasn't a particularly surprising diagnosis for me, nor an especially upsetting one.  There have been plenty of worse things we have thought it could be and tested for and cerebral palsy is a fairly broad term and one I have had in the back of my mind for a year now.  It still feels a bit strange to just openly write that my son has cerebral palsy... but writing it is part of accepting it so I wanted to write a post and introduce you to that term.

If you do not know what cerebral palsy is, it is basically any motor disorder that is caused by some epsiode of cortical or brain damage, usually from oxygen deprivation.  It is really an umbrella term with tons of subtypes and people with cerebral palsy can have the wide range of functioning from walking independently and just having some problems with hand writing and motor skills, to being entirely dependent and wheelchair bound.  So the term itself does not surprise me or mean very much.  Once we eliminiated a separate condition, we knew we were looking at the label cerebral palsy.  What is sadder or more difficult, I suppose, is that Max has been diagnosed with the most severe sub-type of cerebral palsy.  He has what is called 'Spastic Quadriplegic Cerebral Palsy' which actually sounds worse due to the emotive value of those words.  But basically quadriplegic in this context just means that all four limbs are affected.  He is not quadriplegic in the cannot move, cannot sense meaning of the word.  But all four of his limbs are affected by his condition.  And his movements when he does make them are not smooth and purposeful but rather spastic meaning jerky and not well controlled.  Hence the label. 

It is a severe form of cerebral palsy generally associated with wheelchair dependency and communication difficulties.  In terms of what it means about his cognitive or intellectual ability, it is harder to say.  Although his CP makes him more likely to have an intellectual disability and he does currently have cognitive delays, he could also have a pretty high level of cognitive functioning if we make sure to maximise his experiences and exposures and if we find a way to help him communicate with us.

Having this diagnosis has been good, I think.  I am glad to be done with the search for what is really wrong and feel at peace that we have reached this point.  And CP is not degenerative and people can live to adulthood with it so it's a lot less upsetting than some of the things we have had to consider this year.  The only thing I think that I initially struggled with is that we still do not know when it happened (when he suffered from oxygen deprivation).  The team at Stanford did not know and do not think we'll ever know.  From looking at features of his brain, it seems that he suffered damage around the week he was born.  It very well could have been in utero and in fact have been what prompted their premature birth.   It could have been during birth.  It could have been 3 days after birth when he had his lung bleed.  We don't think we can really pin point it, even though in reality there would have been an exact moment.  And for a while now I have felt a strong pull or need to know when.

But then the other day I was thinking about 'anniversaries' if you will.  I have noticed I often think this time last year etcetera about key events.  Even coming up on the one year after Addie's PICU stay, I find I'm thinking more about it.  And I read a lot of blogs of parents whose children suffered brain damage from choking or drowning and they know the day it happened and when that day rolls around, so do a lot of emotions.   And I realized it may be good I don't really know.  Because most likely options were either their birthday or Christmas and I don't want either of those days to be the anniversary of when Max went without oxygen.  Those are two extremely happy days for me.  And they get to stay that way because I don't know when it happened.  And I don't have to think too much about the moment it happened and what I was doing or how he felt.  By it staying as 'at some point in that week or so' it stays that little bit more removed.  And it's enough to know that.  I am ok with not knowing when and actually starting to feel glad i don't.

Especially when at the end of the day, when just doesn't matter.  Dr C, our transplant surgeon said that what happened to Max has happened.  It is not still happening and it's not going to happen again.  So all we can do now is make the absolute best for him of what is.  And that is where transplant becomes so important.  It is the next step.  So I am letting go of when it happened and accepting what it is- my son has a severe form of cerebral palsy.  He has serious motor issues.  But he is here with us.  Whatever happened changed him but it did not take him and for that we are forever grateful.  And what is more it did not take his smile, his resilience, his gentle spirit, his happiness or his ability to feel loved.  And it will not take his future.  We won't let it.  His future is going to be different and it will involve challenges I wish he did not have to face.  BUT it will involve love and happiness and we are going to be grateful every day for his future.  So I am okay with Cerebral Palsy.  I am at peace with using the term and explaining to people that Max has CP.  It's been a year long journey to get the label and for us to feel that acceptance but we are thankful to be there.  With the answers we need to know and the closure and peace we needed to have.

Thursday, November 22, 2012

The ABCs of Thankfulness

Last year for Thanksgiving I posted about the 10 things I was thankful for.  It was a great post (if I must say so myself!) and so I have been trying to figure out what to do for this Thanksgiving as I am still so thankful for those 10 things and more! Plus I have been focusing on thankfulness all month so a lot of the things I am thankful for I have already written about or mentioned so I was a bit stumped... Then as we were sitting and playing with the babies with their ABC cards and watching the many Sesame Street videos devoted to the alphabet, I decided I would do an ABC rendition of thankfulness! 

So here we go...

A is for Alister.  I am thankful for my partner, my best friend, and my babies' wonderful Daddy.  I am thankful that he is about to be giving our son his kidney and for all the ways he has taken care of us all.

B is for my Babies.  I am so incredibly thankful for my babies.  Max and Addison are my sunshine, my heart, the loves of my life.  I cannot imagine life without them and I never miss life before them, even though it was simpler.  Their smiles and precious personalities are the greatest source of joy in my life.  I am so thankful that they are here with us, even healthier and happier than they were a year ago, despite a lot of issues this year.  I am so thankful that I am their mom and that they are mine.

C is for Crossroads Baptist Church.  We are thankful for Pastor Larry and Vicki and for the friends who have prayed for us and supported my parents through this journey. 

D is for Doctors and Nurses who have saved our babies lives, who respond to texts from us around the clock and do everything they can to make sure we feel confident in taking care of Max and Addie. We are thankful for our Texas team and our California team and feel extra blessed to have two teams that love Max and Addie and support us.

E is for Emily, Megan and Lachlan... my sister in laws and brother in law and the most wonderful aunts and uncle.  They have travelled long and far to meet their neice and nephew and encourage us always.  Aunty Emily spent so much time teaching Max how to control his hand and he showed all this progress during his time with her. 

F is for Friends.  New friends, best friends, old friends, family friends... we have recieved lots of love and support from people we haven't seen in years, from people who are involved in our daily lives, from people who live near and far.  Friends make us laugh, share our burdens and make sure we know that whatever we going through we are never alone!

G is for Gigi and Marnie.  Al's parents are amazing wonderful selfless people.  They have spent so much time coming out here to see us and right now we are extra thankful that they will be coming out to California for close to 2 months to help us through this transplant.

H is for Hannah, and little miss Heidi too... We are having a wonderful time having Hannah here and laughing lots and going on big adventures and talking about everything and her friendship is such a huge blessing in my life!  (Hannah would also like to include for H, the Hardy Toll Road as we have had some wonderful moments this week of being rescued by the horrendous I45 traffic by the empty toll road.

I is for the Internet... Email, Skype, Facebook and Blogging have all been wonderful ways for us to feel connected and supported. 

J is for Jesus and our faith... the hope that we have knowing that someone else is ultimately in control.  Thanking God for the way he has taken care of us and the miracles He has done in our life.

K is for Kidneys! We are so incredibly thankful this Thanksgiving that Al and I had healthy kidneys and were both matches for the babies and that we have been able to give this gift of life to our children.  You would never think to be super thankful for kidneys but it's pretty much at the top of our list this year.

L is for Laughter, truly the best medicine.  Addie's adorable laughter, the laughter at the dinner table, friends that can help us laugh and see humor even in difficult circumstances.  If I couldn't laugh so much, goodness knows I wouldn't make it through so I'm grateful for the laughs along the way.

M is for Mrs Becky.  My mom's best friend who has been in my life since I was around Addie's age is such a blessing to us.  She is so full of energy and so much fun!  She meets my mom almost every week for lab draws and clinic and makes what could be a not so fun day one of the highlights of Addie's week.  Addie squeals with delight when she sees Mrs Becky and absolutely adores her.  As does Max.  We love her!

N is for Nana, and Papa too!  The best nana there ever was, my mom does everything for Max and Addie.  She spends so much time with Addie, and not just fun time! She takes her for blood draws, she takes her to speech therapy.  She spent 9 nights in the hospital in May with Addie and spent many of those nights with Addie in her lap.  She is always giving and lovin all of us.  And you can tell because Addie absolutely adores her.  She is the only person I would leave Addie with and I'm so thankful Addie gets to stay with her and does not have to live up at the hospital during Max's transplant week. Oh and Papa is wonderful too but he did already get his own Ode so I thought I'd focus on Nana a bit more ;)

O is for Operations that save lives.  If Max and Addie had been born in another time in history, they would not be with us.  Surgeries and medications have saved their extremely precious lives.  And this year we are especially grateful for the miracle that is transplants, that it is even possible to take an organ from one person to another and give them this whole new life. 

P is for Prayers.   We are so thankful for how many people pray for us.  The number of people praying for Addie in May was amazing and we know Max will be covered in equal amounts of prayers during his.

Q is Quality Time.   My love language is quality time so spending time with my loved ones is my favorite thing and the best way for me to recharge.  And this week I am especially thankful for a whole week of quality time.  We are staying at my parents so I have spent the week with my mom and dad, my husband, my brother, my best friend and three extremely precious babies. 

R is for Ridge Rocks (my school!) I am thankful for the school I work at, the students who make me laugh and the co workers who are my friends.  I am also feeling thankful for my job as a teacher this week when I've had the whole week off! So thankful for a great job that allows me to have a lot of time with my family.

S is for Shannon.  I am so thankful for my best friend here in America that I get to see every day at work and who I share all my good days and bad days with.  Don't see how I could have made it through the past year without her!

T is for Therapists.  The therapists who have worked with Max and Addie have really helped them acheieve their potential at every stage.  We are thankful for Nicole our physical therapist who worked with the babies in the NICU and now out and helped get Addie walking and for Sierra, our occupational therapist who adores Max and works so patiently with him and never gives up hope for him for him reaching new inchstones.  We have a new speech therapists Lindsey and Miriam who are teaching Max to allow things near his mouth and Addie to talk and the babies adore them.

U is for Uncle Adam.  My brother has spent lots of time with us this year and is great with the babies, even when Addie is a rascal and gets scared of him the first few days of every visit.  He always brings a breath of fresh air and his great wry sense of humor in when he comes to visit.

V is for Videos that hold Addie's attention.  (I would have said E is for Elmo were it not for his involvement in a sex scandal...)  But we are genuinely thankful for the portable DVD player and our Sesame Street videos that keep Addie in her high chair and out of trouble during meals and have helped us reclaim adult conversations!

W is for Weddings, in particular the one coming up July 27.   Weddings are so much fun and we are so excited for my brother and Jenny's wedding this summer.  We can't wait to celebrate with them.

X is for X-rays, Ultrasounds, Echocardiograms and EEGs... all the tools that our doctors use to help us know what is going on inside our babies and have helped keep them healthy and safe.
Y is for YOU!  I am so thankful that people read my blogs!

Z is for Zero Calorie Drinks...  Waking up at 5am every morning and not loving coffee, I certainly have a great love for Coke Zero!

Obviously we have a lot to be thankful for this year! Happy Thanksgiving everyone!!!

 

Wednesday, November 21, 2012

Twas the night before thankfulness...

I have a good plan for what I am going to blog about for my big thanksgiving gratitude post for tomorrow, it's been already a work in progress.  So then I came and sat down to blog tonight and struggled with any other topic just not seeming appropriate.  I have two half written posts on Max's cerebral palsy diagnosis and Addie's tube feeding but although there are things within them that I am thankful for, I just felt that neither was super positive or what I was wanting to write about after a lovely day with friends and family.  So I will finish those later but for tonight I think I'll go hang out with my hubby and best friend and leave you with just a quick picture and morsel of thankfulness...

Here are the babies with their transplant team in California...


From left to right we have Dr G, the head of the transplant program, Dr C, the surgeon who operated on Addie and me and who will be operating on Al and Max, Gerri our transplant coordinator who arranged both transplants and Lynn who takes care of the babies after transplant.

We are so thankful for these four people and the tremendous difference they have made in our lives.  And we are looking forward to spending more time with them in a couple of weeks. 

And now off to soak up my family... more rambling emotional posts to come, of course :)

Tuesday, November 20, 2012

Steel Magnolias

I bet you are wondering why I am writing about Steel Magnolias... I mean I must have really exhuasted my ideas for blog topics if I have decided to ramble about an 80s movie starring Sally Field... how could that possibly be relevant?! Well if you remember well the story of Steel Magnolias you might see where this is going... but allow me to tell you the story of when I realized that Steel Magnolias was relevant to me...

In August my grandmother was coming to town and my mom saw that a local theater group was putting on a production of Steel Magnolias and it seemed like a fun thing for us to do all together.  We didn't really even talk about what Steel Magnolias was about aside from maybe a passing comment about those funny beauty shop ladies and how sad it was when Julia Roberts dies.  My mom was confused with Terms of Endearment and thought Julia was going to die of cancer.  I remembered it was diabetes related and thought she died of a diabetic shock.  Now obviously we both knew a main character was going to die so we hardly expected it not to be sad... BUT we did not remember that Julia Roberts character Shelby dies of hemodialysis complications soon after a successful kidney transplant in which her mom was the donor.  Nor did we realize it was based on a true story, the story of the playwright's sister.

We did not realize it until we are sitting in the theater watching Sally Field's extremely painful monologues about her daughters death and all realizing how way too close to home this was hitting.  What is interesting is that we had both seen the movie before a long time ago... it's just back then a kidney issue was so unremarkable and unemotional for us that we did not remember that element of the plot.  Now of course if I heard someone say 'my kid's knee' I'd like whip around and be like 'what kidney?'  But back then kidneys weren't significant so we forgot. 

Anyway we left and all brooded over Steel Magnolias for a couple of days and told each other and ourselves 'it's just a play' a lot. Which of course would have been more reassuring had it not been based on a true story... but either way it was just a story.  And for a few ignorant moments in my thinking about it, I remember thinking 'oh well, we are past that.  Addie has already had her transplant.  Her dialysis days are over.  She is not going to be a beautiful young mom dealing with this still.'  And then just as quickly as I had that thought, I realized that sadly that is not true and that she will be dealing with this all over again... and again.  And then it made it a lot harder to shake off.

I am not sure if I've ever written about this or not but a lot of people probably do not or did not know that my kidney will not last Addie the rest of her life.  We have been told anything from 10-20 years on average for how long she will get out of that kidney, even assuming she does not have acute or sudden rejection.  Even if everything goes really well, at some point she will start to gradually lose kidney function.  Sometime in her teenage or early adult years.  I am not sure my explanations are always 100% medically sound but they are close enough to make sense to me... so basically there are a couple of factors.  One is that even with her reduced immune system, her body is still fighting the kidney, albeit very slowly and gradually which affect its longevity.  Furthermore, the medications we have her on to prevent a sudden acute form of rejection are actually toxic to the kidney, again slowly so that in order to save her kidney in the short run we are inevitably damaging it in the long run. Hopefully it wouldn't be a sudden unexpected failure but more a slow trend that we would follow in her labs.  And there are lots of stories of people whose kidneys make is 25-30 years so it is certainly possible max and addie will have longer than 10-20 years.  And the fact that they both got parental kidneys should help them have them for longer.

But yeah one day they are going to go through all this again.  Maybe, hopefully, without dialysis if we can get a new kidney transplanted before the current one completely fails... but quite possibly they could need dialysis again in their teens and that is why Steel Magnolias is extra sad... because as hard as going through it with babies has been, I also hate to think about them going through it when they really understand what is going on.

But at the end of the day, as I've said many times before, we just have to live for today and love where we are at right now. Because that is a looooong time away and who knows by then.  Al likes to think there will be artificial kidneys by then! I like to think all the progress with medications and so forth will mean they make it longer.  Who knows.  And whenever we do face that in the future, we'll get through it.  I mean we got through it this time so I don't doubt we'll be just fine.  And I certainly do not want to spend the next 10-20 years worrying about it.  So we just have to love this wonderful gift of many many years with wonderful kidneys working brilliantly for them and help them grow up into resilient happy courageous people.  After all, for right now, we really aren't too worried about life with them as teenagers and are just so extremely grateful and thankful that this dialysis phase is long over for Addie and quickly wrapping up for Max. 

Monday, November 19, 2012

Max's First Haircut!

Today was a big day for Max- he got his first haircut!  He really enjoyed the experience and laughed through it and came out looking like quite a handome man!


We started realizing it was time for Max to get a haircut when he would have these bad hair days where his hair would take on a Kramer like quality. 


He has thick beautiful hair but in the back it was developing a mullet and that is never anyone's best look so definitely time to look into a haircut.

One of the things we are realizing now and I am sure will become more true the older he gets is that when you have a child with serious disabilities, even little things can be quite big things to wrap your head around.  Getting a haircut can be challenging without head control and the ability to sit independently and turn your head.  And Al and I felt we really did not want to take him somewhere where we would have had to explain his condition a lot and answer difficult questions or where we feared him experiencing pity or prejudice.  I know Max is completely adorable and it hard to believe anyone could do anything but adore him but we do find that people who do not really understand his condition can be uncomfortable with him and we never want that for him.

Thankfully though our hairdresser is one of the nicest people ever.  She has such a heart for our family and has shown us tremendous kindness and generosity.  When my babies were in the NICU and my hair was the last thing on my mind she told me I could come in any time, even at night, and she would do my hair for me.  She ended up staying late on Friday night and wouldn't take any payment afterwards.  And she has been doing that for me since.  It's lovely when there are so many things going on and a lot of financial things to worry about to have had this luxury of still having nice hair! It has made me feel better and I have so appreciated her gift to me! 

So we knew she would love to be the person to cut Max's hair.  Between my mom and I she knew quite a lot about Max and so she stayed after they closed and let us come in when it was just us.  She had Max sit on Al's lap and had a little spray bottle so we wouldn't have to dunk his head.  She worked so patiently with Al on getting his head positioning right.  Max tends to arch his head a lot if you hold it at certain angles so it wasn't easy for her to get parts of it cut but she worked on his hair for over half an hour and was so kind and gentle.  Max loved the experience and laughed and smiled and enjoyed the attention and he left looking so handsome and grown up!





I'm so thankful to Carol for how she has blessed our family and for taking the time to make Max's first haircut a special and non stressful experience for all of us!

Meanwhile, I am accumulating good pics of the girls for a later post but a sneak peak of Hannah and I with our girls...

Sunday, November 18, 2012

Dancing in the Rain

There are a lot of quotes and sayings and songs about hard times.  At the moment there is a song on the radio by Gary Allen that says 'Every storm runs out of rain' which is essentially the same idea as 'this too shall pass' or 'if you are going through hell, keep on going'... sayings that depending on my mood I either find quite inspirational or quite infuriating. When the babies first were born early Al and I talked a lot about 'the light at the end of the tunnel'... we would lie in bed and say 'ok it's going to be a tough 2 months but we can do it and then they'll be home and it'll all be ok.'  Then we realized they were sick and the severity of their kidney condition became clear and it became 'ok, this is tough but we it'll be two years.  Two tough years and then they'll be transplanted and everything will be normal and ok and all our issues will be past us.'  I think one of the things we have struggled with this year in getting Max's cerebral palsy diagnosis is realizing that things will never really be normal and we are going to have ongoing medical issues with our kids.  Even with Addie, we will be dealing with her hearing loss and feeding issues long term.  So we have had to deal with the notion that there is no true 'light of the end of the tunnel' for our medical dramas.  And so therefore there are days when the running out of rain, hang in there, this too will end kind of sayings just are not what help me the most.  My favorite saying that I posted the week the babies came home from the NICU and which has become increasingly more true is:  "Life is not about waiting for the storm to pass, it is about learning to dance in the rain"

I love that idea because if we consider medically fragile children to be our 'storm' then the key for us is not to wait it out but to find the joy and happiness during it, and even sometimes the blessings because of it.  I was thinking about this saying tonight at dinner as we had some special dinner guests.  With Hannah being here, I had invited Shannon, my best friend here and Lori, my friend who was the babies' NICU nurse for dinner.  And so I sat around with these three wonderful girls and I thought about how in a way the babies medical issues had strengthened my friendship with each.  The emails and phone calls and support from Hannah kept us closer and involved in each other's lives despite the distance and made drifting apart impossible when I needed her on a daily basis.  And while I no doubt would have become friends with Shannon no matter what, I know our friendship is so much closer because she has been through so much with me these past couple of years.  She came to the PICU every other day last December and would hang out with me like all evening and I think our friendship became so much stronger and more special during what was otherwise a pretty awful time.  And then I never would have even met Lori if the babies had not been sick.  And the same is true for many of my nurse friends who I love and count as close friends that I know are only in my life because of the babies being sick. I sat thinking how blessed I was by these three friendships and many others and about how much good has come from the babies being sick.

Spending time with Lori also reminded me of how much we enjoyed the babies while they were in the NICU.  We loved holding them and cuddling them and spending time with them.  I honestly do not look back at their 8 month NICU stay with sadness.  It was my first 8 months as a mom, my first months with my precious babies.  It had some awful traumatic times sprinkled throughout... But it was also a happy time and I will remember it with fondness always.  Likewise for Addie's transplant.  We had a genuinely fun with in California.  I made wonderful friends with the coordinators on our team there.  We went sight-seeing, we enjoyed the weather, we played with Addie and loved on her.  We danced in the rain.  And my memories of those two months will always be happy.  Day to day, sure we do tube feedings and dialysis and worry about medications etcetera but mostly we just play with these adorable babies and laugh at their cuteness and soak them up.  We spend our time with them smiling and laughing- they are pure joy. 

So I know our medical journey is far from over.  I know we will never have a normal life.  I know this 'storm' has plenty of rain left in it... but I am okay with that because I am determined that I will keep dancing in it.  I will continue to love and enjoy my babies and find the laughter and happiness in my time with them.  I am sure more really special people will come into my life because of their medical issues and I know my true friends that I love the most like Hannah and Shannon will be there through it all and we will have a bond that not all people know.  So bring on the rain, because we stopped looking for a light a long time ago and are perfectly happy now just to whip out the umbrella and keep singing and dancing in it!

Saturday, November 17, 2012

MAX IS GETTING A KIDNEY!!!

Most of you who are friends with me on Facebook already know the exciting news that not only did we get a great report on Addie's kidneys but we both got approval to transplant Max and made our final decision that we will be moving forward with our plan to transplant Max on December 11 which is less than 4 weeks away! It was a busy, stressful and emotional week but we left with a great outcome and most important, we left with confidence and peace that we making the right decision for Max.

Our primary concern, and our team's primary concern, was would transplant increase the quality of Max's life.   There was never any question on Al's side that he wanted to give Max his kidney, there was no hesitation that if we knew we could safely transplant Max and knew that he would not be making him worse that would be what we would decide.  That was an easier question to answer for Addie for several reasons.  The biggest difference for us is that Addie was not stable and Max is.  Addie needed to be transplanted. The risks for a baby on hemodialysis were unbelievable and she not growing and running in to significant life threatening issues with potassium levels and hypertension. Leaving her on dialysis was so obviously not in her favor that it made the decision easy.  Max, on the other hand, has had a great course with dialysis.  We has had no hospitalizations since April and none of the significant issues that Addie has had.  He is growing and he is getting to stay home thanks to peritoneal dialysis.  Right now dialysis is working for him.  The neurologist said 'I see a child who has a lot of medical issues and yet he is growing and healthy and smiling... why risk all that and go into such a big surgery?'  It was a good question.

He had a really good meeting yesterday with the transplant team, addressing these questions.  We had long discussions regarding how might things be different this time.  I think it was important for everyone that we understood that Addie's rock star transplant experience may not be the same for Max.  There are a lot of risks for any baby undergoing a transplant and Addie's experience was abnormally smooth and uneventful.  We expect a rougher course for Max... but then again, who knows- maybe he will sail through just like his sister.  We are certainly praying that is the case.  But while there are always respiratory risks and possible complications, there are not significantly more for Max and so from that standpoint, while yes there are risks, they are not reason enough to not transplant him.  His cerebral palsy may make immunosuppression more difficult in the future but it also may not so we don't feel that we can make decisions now based on things that could happen down the road.  So while there are risks, we do feel that we can safely transplant Max.

And while it can seem difficult to put a currently stable and quite happy baby through a difficult surgery and months of recovery, the team also helped us see that it is always preferable to transplant a healthier baby who is stable than a baby who has run into a lot of complications and is very compromised.  They also explained, which we already know well, that dialysis does have a lot of risks and that the chances of Max remaining stable on it long term is low.  He will eventually run into problems and the dialysis will over time take its toll on Max.  And the best thing we can do for him is transplant him now, before those things happen.   And that made total sense to us and helped us feel at peace with going through surgery now and not later.  We also believe he will in the long run be so much happier to spend less time attached to his machine and with the family and going out.  He was so incredibly happy in California and loved being busy and out and about.  Even with his motor limitations, a dialysis free life will buy Max so much more freedom and quality time with his loved ones.  The quality of life issue is murkier than with Addie but it is nonetheless clear to us he does have a lot to gain from being transplanted.

So... we left feeling very supported by the team and very sure that, although it will be scary and difficult, transplanting Max now is the best decision for our family and for his health and happiness.  With that peace and direction, we are excited to let you know that on December 11th Al will be donating his kidney to Max in California! My in laws and I will be there to help them through their first couple weeks and then we are planning a whole family birthday celebration and Christmas at the end of December in California and are thrilled to realize that we will celebrate their second birthday with them both having kidneys and being dialysis free. What a blessing!

Here are some sweet pictures of my boys.  They have a wonderful relationship and Al is so happy that he is able to give this gift to Max.




There are a few ways we would love your support and encouragement in the next three weeks. 

1)  First of all, and most importantly Max needs your prayers! We saw wonderful miracles through Addie's transplant and we know that the thousands of prayers lifted up for her made a huge difference!  With his additional risks, he needs your prayers even more than his sister and we would ask everyone to surround him with prayer, love, positive thoughts and well wishes leading up to December 11th.  I will share more specific prayer requests as we get closer!  Please feel free to share Max's story, share links to this blog and share our names with your family and friends so we can have lots of prayers and love during this time!

2) Secondly we would LOVE messages for Max.  I started a poster drive for Addie and she ended up with 300 pictures that we displayed in her hospital room.  It was a great testimony of how loved she is and how much prayer and support was with her.  It encouraged us all tremendously! We would love the same for Max!  So please start snapping away- with the holidays this week, what a great opportunity to take some pictures with messages for Max.  You can send them to me at steph.graham@hotmail.com, text them to me or post them on Facebook and tag me! And again, please share this and get your friends involved too.

3) Thirdly, if you are able and feel led, we have actually started a transplant fund for Max that you could make a donation to.  There have obviously been exorbanant costs involved in arranging two out of state transplants and what will end up being more than 4 months of living in a serviced apartment. Thankfully our insurance has helped with a lot of costs and our families have been amazingly generous.  We would not have been able to transplant the babies were it not for the generosity of both of our parents.  However, we have some additional costs this time as I am having to take a chunk of unpaid leave to go out for the surgery and we could certainly use some help covering this cost.  I had great visions of organizing a fundraising event and inviting you all to some gala with a silent auction... but alas with only three weeks remaining and a lot to do, I don't see that happening.  So I have set up a donate button at the top of my blog.  You can use any credit card and donate to Max's transplant fund.  Many people have asked how they could help so we felt led to start this fund. It is a private way to donate and just a way that those of you who are interested in a way of helping us financially to do so.

We appreciate the prayers for us during the past week.  We really left with a great peace about our decision and know that all the prayers for wisdom and direction were answered.  We are so thankful for all of you and the support we have experienced in the past couple of years. 

Friday, November 16, 2012

My other Australian Soul Mate

As most of you have read on Facebook, we left California with good news and direction! I am working on a blog post all about Max's upcoming transplant and all about why we now feel at peace without our decision and about ways you can be praying for us and supporting us in coming weeks.  But with very little sleep and being back at work, that post will have to wait.  Plus, today is a very special day so I had a post planned for today in honor of Hannah's arrival!

Fourteen years ago my parents told us my Dad had gotten a new assignment and then they put blindfolds on us and put us in the car and told us where we would be moving would be revealed when we got there.  I hoped the whole car ride that we were heading to Outback!  And I screamed and jumped up and down when we got there and the blindfolds were removed and there we were.  I was so excited to get to live in Australia.  I saw it as a great adventure and a great opportunity.  And it totally was.  My 10 years in Australia were wonderful.  They shaped me in profound ways and probably most significantly, I found my two soul mates in Australia.  The two people who, aside from my family, have had the biggest impact on me and who I see being in my life until I die.  Of course my husband is one of those people and thankfully I got to bring him back here with me! Sadly I had to leave my other 'other half' in Australia and I have missed her every day so much.  So today is a wonderful day because my best friend, my second greatest thing to have come from living in Australia, my Hananh arrives today!!!


At sixteen, I was a pretty typical American teenage girl at that time.  I had boy short wavy hair (what on earth was I thinking?!), I wore a reasonable amount of make up.  I wore well coordinated outfits and trendy clothes.  I fit in.  And then I moved to Australia.  And the girls there were so different.  They all had long hair that they pulled back for school.  I went to a private school were make up and jewellery were discouraged so they girls did not wear them.  The fashion was different.  And suddenly I felt like I stood out like a sore thumb. I started worrying about whether I'd make good friends and fit in.  And then I met Hannah.  And I loved her right away.  She is hilarious, brilliant, accepting and so easy to just spend time with.  A couple of months after being in Australia, I remember inviting her over after school and I remember the day very well because I was wearing denim shorts overalls and to this day she makes tremendous fun of me for my overalls! And we played tennis and I totally cannot play tennis.  And we laughed so hard and had so much fun.  My mom remembers that day and watching us hang out and knew I'd made a special friend.  I will be forever grateful that Hannah loved me crazy short frizzy hair, overalls and terrible tennis playing and all and that from that day we forged an amazing friendship.

(I tried to find a photo of me with the short hair and overalls but in the craziness of this week did not manage to! Plus I would like to not totally humiliate myself on my blog!)

After that day, Hannah and I were inseperable through the rest of high school.  She stayed the night at our house because we lived close to school many nights.  We studied so hard together.  We would call it 'study camp' and we followed a 'study regime' and it was hard core.  We set up a table and would have structured study times and would sit there together eating Mint Slices and Party Animals and guzzling Diet Pepsi and working as hard as we could.  When we would get tired of our table, we would pack up and go into the State library and study there.  We crammed in these 12 hour study days- it was crazy! Areas that I was stronger in I would teach her about and areas that she was stronger in, she would teach me about.  What I will always love about my friendship with Hannah is that we brought out the best in each other.  We encouraged each other to study and acheive our best.  We did better in school because of each other.  And that is true not just of school.  I know I am a better person because of Hannah.  And when I am with her, I am a happier, stronger, funnier more content person.  She brings out my best, and that is probably what defines a best friend.

We had so much fun doing everything from shopping for formal dresses to going on school camps to spending countless hours discussing the boys in our lives.  I love that I got to watch Hannah fall in love with her now husband and be there from the beginning and through the ups and downs, be the person she came over to show her engagement ring to and then be there at their wedding day.  Likewise I'll always remember that Hannah had stayed at my house the night before my first date with Al.  He took me to a boathouse for morning tea and then for a row boat ride.  And Hannah stayed at my house the whole time so she could be there when I got home to hear all about it.  I got home from my date and she was hanging out with my Dad and dying to hear how it went.  She was the person I shared all of my relationship issues with, the person I went crying to when there were hard times and the person I dropped in on at 10pm the night I got engaged just to tell her.  She was, of course, my matron of honor.


As you get older and you get married and have kids, you continue to make wonderful, close friendships but there is something wonderful about your best friend during high school and college because you get to share unique things, like getting to live together.  Hannah and I lived together for two years and it was so much fun!  We loved living together, we never experienced any of the whole 'oh don't live with your best friend' things.  We loved getting to come home to the person we wanted to tell about our day! We were leaders in a young adult Bible study that met at the crack of dawn every Saturday an hour from our place and we would drive there in the dark still and somehow be laughing and having a great time, even though we were always so exhausted! I could bore you all with countless stories about our advenutures during my 10 years in Australia, there were so many!

Of course then four years ago Al and I moved back to America.  It wasn't an easy decision but we both wanted to try something different and I really wanted to be close to my parents to get married and start a family.  And given everything we have faced with the babies, we do not doubt we are in the right place.  And we are very settled here.   But we miss Australia, or more importantly the people we left in Australia, terribly. We miss Al's parents so much and I miss Hananh every day.  It has been hard these past two years going through the biggest things in my life without her here every day.  The first two months after they were born, I emailed her almost every day.  She helped me process everything that was going on.  We talked on the phone and she helped keep me calm.  Because she is a doctor, and because she is brilliant, she understood everything that was going on and talking things through with her always made it seem less scary.

Hannah's trips to America have been a tremendous blessing.  The day after we found out about their kidney condition, Hannah booked her airfare to come out in a few months time.  And immediately I had something to look forward to.  I had no idea when my babies would be coming home.  I had no idea what was going on so I had to cling to something good I knew was going to happen so I counted down days until she got here.  And that June, Hannah came and spent every day in the NICU with us. It was the best two weeks of all of last year! I loved having her here. She helped me find the humor and the joy in our circumstances.  She spent hours holding my babies and loving them.  She witnessed Max's blue spells, she experienced all the good, bad and ugly of that phase of our lives. And I recharged.  We had wonderful lunches in Rice Village, we went shopping, we had awesome conversations driving back and forth to the hospital.  Hannah is a psychiatrist and even when she isn't trying to, she makes me better.  And by the time she left, I felt like I was in such a better place. 

And it turns out I really needed it because a week after she left, Max and Addie had their remaining kidney out and soon Addie got so sick and July ended up being the most difficult month for me.  Hannah said many times she had wished she'd been there then instead of when things were stable and although I wish she could always be here, I know what I needed most was those two weeks of joy and the time to feel rested and happy and strong before heading into that crisis.  So I know the timing was perfect and that God had planned for her to be out exactly when I needed her.  And now, here we are almost 18 months later, and he has done the same blessing for me again!

Hannah had talked about coming out once she had Heidi for a long time.  I know she hated not to be able to come for my surgery but being 8 months pregnant suggested it was not the right time! But right before my surgery, she went ahead and booked a ticket for November.  I think it made going through Addie's transplant easier just knowing when she'd be here.  We picked next week because I would be off work but of course had no idea it would end up being the week after Max's evaluation or two weeks before his transplant.  It just seemed convenient so she booked it.  And what an amazing blessing it has been and will be!

We had a stressful,emotional, draining week and when we were tired and overwhelmed, it helped so much to think about how much fun it will be when Hannah is out.  And much like last time she came out, I think it'll be a much needed chance to recharge and have some fun and have someone to share all this with and sort through all my thoughts and feelings with and get my strength back up before we head into to December and Max's hopeful transplant.

So today for my month of thankfulness, I am thankful that true friendship is never limited by distance and that God has provided these special visits from Hannah at just the times when I most need them!

Wednesday, November 14, 2012

Cali Day 3- the day we got run out of a Travelodge

We were really looking forward to a slower day which haha, was a pretty funny idea that we ever really thought that was going to happen!  Our day managed to be as jam-packed as the past few.  We spent the morning and early afternoon at the hospital getting Al's abdominal MRI done and Max's ultrasound and various bloodwork and tests done.  Then just when we getting ready to have a quieter afternoon, it turns out there was some problem with our accommodation booking and our fancy travelodge kicked us out!  Never a good sign when you get booted out of a motel!  My mom found out while we were still at the hospital and texted and said we had a huge problem with the hotel and I wrote back 'did you find a mouse'? (which if you had seen where we were staying you would realize this was a very reasonable question!) and she replied with 'I wish!'  Haha, I knew we were in trouble if my mom was wishing she was dealing with a mouse instead!

So suddenly we had tons of suitcases, a dialysis machine and medical supplies and two toddlers and nowhere to go! Thankfully, as always God provided and our accommodations director at the hospital managed to find rooms for us at a much nicer place and they even waived most of the cost! So although it caused for a busy and stressful afternoon, we are settled in and much more comfortable tonight as I suppose good came from it all. 

Our day was less emotional since we didn't get any new information or news so it was nice to have a day just to digest the past couple and start to sort through everything.  Tomorrow we go to clinic for Max to meet the doctors and surgeons (who of course we are not meeting since we already know them well... but it is their first time to meet Max properly and discuss him with us).  We should have more results back and it will be a chance to pull all the different recommedations and information together and talk more holistically about Max's care and the plans for transplanting.  We will also meet with social work and Al will get some more evaluation for being Max's donor.  We also hope to have some information from Addie's biopsy.  It will be an important day and a big finale to our week.  We may not necessarily leave with a final decision or answer but I think we will certainly feel more sense of direction.  We would appreciate more prayers for wisdom and strength for these conversations and decisions. 

I am extra thankful tonight that it is Wednesday now and that in only 48 hours I will have picked up Hannah from the airport and instead of rushing around and thinking about all these big things, I will be enjoying laughing and catching up with my best friend.  The light at the end of this stressful week is shining brightly!

Tuesday, November 13, 2012

Cali Day 2

Tonight's blog entry comes to you from the Short Stay Unit at the Packard Children's Hospital where a precious baby girl is finally drifting off to sleep after a long day.  Today was a very full and tiring day but everything went smoothly and our meetings for Max went better than yesterday so it was not a bad day, just a very long one.  Addie has been here for about 12 hours now, she had to get IV fluids for 3 hours before and 8 hours after her surgery and she was not so crazy about the whole staying in bed all day idea so she has been a bit frustrated but on the whole, her usual wonderful trooper self.  She is really such a good baby.  And also, Elmo is awesome and we are pretty thankful that this day coincided with her I just want to watch the same episode of Elmo's World over and over phase.  My mom has been with her all day and we are so thankful for her help so that I could go to the meetings with the boys.  My mom was the one to go get her in recovery and the only place she felt calm and comfortable was on her nana's lap so they ended up getting her back to her room by wheeling my mom in a wheelchair with Addie on her lap.  It was so cute.  We will hopefully get some preliminary results by Thursday and a full report end of this week or next.  We of course hope and pray Addie's kidney is working perfectly but will also be glad if something does show up that we caught it early and can make adjustments.

For Max, we met with Pulmonary today which is for his breathing, airway issues.  And it went better than expected.  I suppose after the disheartening neuro meeting, we had braced ourselves for the worst.  But she was pleased with how much better Max's airway is and very reassuring that once it has hardened and gotten better that it won't just get worse again.  She felt that while transplant for babies always poses some respiratory risks, she did not feel that Max was at a particularly heightened risk than say Addie would have been going into surgery.  We talked about the concerns down the road for pneumonia or airway obstructions due to his immotility but she did not seem to think either of those issues should weigh heavily on our current decisions.  We may have respiratory issues with Max in the future or we may not.  We won't really know so we can't really worry too much about that.  Which was actually really great to hear after worrying so much about the future yesterday.  A needed reminder that while we must think about the future, we will never know what it has in store and sometimes have to work with what we know now. 

Al then met with rheumatology and nephrology regarding his approval as a donor and had positive meetings.  Tomorrow Al has an abdominal MRI to check his kidney is okay and Max has an abdominal ultrasound to check his body is ready for it and we have no real consults or meetings.  Addie has a free day!  So after the exhausting and emotional past two days, I think tomorrow will be a welcomed slower day.

We have really appreciated the prayers and encouragement following last night's post.  It lifted our spirits and encouraged us to know how many people are praying for us as we make these decisions and to know how many people love Max and also want the absolute best for him.  We are so thankful for the support and love. 

Monday, November 12, 2012

Showing off Addie and Meeting Neurology

Addie wanted to make sure we got maximum enjoyment out of time in California so she started the day off for us nice and early at 4am.  And then we jammed today full so we are completely exhausted right now.  But I know a lot of people have been thinking about us and praying for us so I wanted to update you on our day!

We had really great parts to today.  It was so delightful showing Addie off at her clinic appointment.  Her doctors and nurses raved over her and her progress.  The head of transplant said she looked 'like a million bucks.'  She was dressed to perfection in her smocked turkey dress and matching bow (AND HEARING AIDS :)!) and just the most beautiful little doll girl ever.  We had such great information and help from her team and some of these issues we have been having with med levels and hydration seem more manageable now.

Tomorrow Addie will go under for her 6 month protocol biopsy.  There are several different things we are looking for but one of the big ones is slow or chronic rejection.  Her body could actually be slowly working away at the kidney and because it is a big healthy kidney, her labs still look ok.  And then by the time we did realize it, it would be too late.  So they are going to do a needle biopsy and remove kidney cells and study them to see what is really going on in the kidney.  They say that in about 50% of their patients, they make a significant change to treatment based on the biopsy results which then leads to better long term outcomes for the kidney.  So it is definitely a good thing.  It will be a long day tomorrow and we never like seeing our fun energetic busy girl knocked down by a surgery.  And while it used to be such a regular occassion, it's now been 5 months since she had to go under so no fun to go through that.  But we are thankful for these amazing doctors who have tools like this biopsy to ensure her best long term health.  We would appreciate prayers for no surgical complications and a quick recovery and that we will have busy miss Addie back to herself in no time!

Addie went home for a nap with her nana after clinic and Al and I took Max shopping and out for lunch and cupcakes and had a really great time the three of us enjoying the beautiful California weather.  So we did have some great parts to our day!

Then we had our meeting with neurology and it was really difficult and emotionally draining.  There is a lot of stuff that I'm not going to get into now, or maybe ever because it is sad and probably not things everyone wants to have to think about.  But basically as nice as the neurologist was (and he was so much kinder and more compassionate than anyone we have seen before), his overall conclusions on Max were not really more hopeful or easy to think about.  He does not expect Max to make a lot of progress or ever walk or talk.  He said it was 'statistically extremely unlikely'.  Of course we know miracles happen and we will never stop praying but we also expect that we will be dealing with very serious disabilities for Max's whole life.  He did tell us that Max may be thinking a lot more than we can tell and gave us some advice and direction for trying to communicate with him. So that was one positive and optimistic part. And he totally loved Max and appreciated his sweet and happy personality. In terms of transplant, there are just no easy answers.  He certainly had some concerns about transplanting him, both in terms of handling the surgery and more signficantly, adding immunosuppression into the mix. There are both short term and long term risks.  But there are also a lot of risks staying on dialysis.  He addressed all the usual quality of life concerns and the dilemmas we face deciding what is truly best for Max.  We know we want to transplant Max but we continue to pray for wisdom in deciding if that is what is best for him.  Please pray for us.  We are making decisions no parents would ever want to have to make.  So please pray that we feel at complete peace with our decisions and an acceptance of the direction we head in.  

We are emotionally drained tonight.  Talking about these things is tough on us.  But we are nonetheless so thankful that God led us to Stanford and that we have these amazing doctors giving us insight and advice on Max.  And they all do it with so much compassion, for him and for us.  We love our team here and appreciate them so much and have no doubt we are in the right place for our family.

Sunday, November 11, 2012

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!

Saturday, November 10, 2012

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!

Friday, November 9, 2012

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!