Tuesday, December 18, 2012

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.

Saturday, December 15, 2012

Hope in a place and time of tragedy

We knew going into this that things have to be worse before they can be better and that Max would look sicker and sadder before he would look healed.  We knew there would be long days and the moments when you think 'what were we thinking?!'  Still, you know that and it still is hard living it.  We took Max to the OR smiling on Monday and brought him back on a breathing tube sedated and spend the next 72 hours sitting by his side when he LOOKED so sick.  He wasn't, he was healing.  But lying there not interacting with the ventilator humming it would be so easy to forget that this is a step of hope, not a step back.  My spirits would get heavy as I missed Addie terribly and I missed seeing Max's smile and kept having a hard time remembering THIS IS GOOD when it did not look good. 

I never found the NICU to be depressing the way I find the PICU to be depressing.  In the NICU the babies are tiny and early and the parents are scared but most will get better, they just need a medical womb and some attention to get them there.  There are some very sad cases but a lot of new parents kangaroo caring their little ones, a lot of smiles through the tears.  I felt like it was a hopeful place, babies getting better and going home with normal full lives ahead.  Emotional, yes but tragic, only rarely.  But the PICU is different.  When Addie was admitted to the PICU last December, there was a night when we couldn't leave the room for hours because 4 children who had been shot by their father were being rushed in.  There are drownings, there are abuse cases.  Kids fighting against RSV for their lives.  Babies, toddlers, teenagers on ventilators who just hours before would have been running around.  When I am in the PICU, I get sad for the children and the families surrounding us.  I am always aware of how much tragedy there is.

And then yesterday, of course, we were all made ever more aware of how much senseless tragedy there is in the world with the shooting in CT.  As a mom and as a teacher, I was shocked and devastated for those families and the school.  I wished I could have seen Addie to hold her extra close.  I couldn't even think too long about how awful it must be for them because I would not have been able to handle thinking through that grief while sitting next to Max still with a breathing tube, getting better but still facing his fair share of hurdles.  I prayed for everyone involved for a peace that I certainly cannot understand and for love and support for them during this time.

I also looked at my circumstances differently.  I looked at sweet Max on his ventilator and remembered that he is not here in the PICU because of a tragedy, he is here because of a gift his dad gave him.  He is not here because something suddenly threatened his life but rather because of a planned pathway to hope.  His breathing tube was allowing him to heal and get ready for a better life than ever before.  I realized that in this place where there is so much tragedy and on this day where there was so much tragedy, that sweet Max is sweet wonderful hope.  And we are blessed beyond words to be here, hard of a process of this is, on the pathway to a better life for Max.

I wouldn't be normal if I didn't admit that there are days when everything we have been through feels like tragedy to me.  When it feels awful and unfair.  The 8 months in the NICU, the 20+ surgeries, the close calls with Max styopping breathing at home, the brain injury and CP, the hearing loss.  I can lose my persepctive on days and feel that our family has experienced tragedy.  And then sometimes I just need to remember what tragedy really can look like and realize that my babies are alive and smiling.  They have overcome.  Ours is not a story of tragedy but of healing and hope. 

I spoke to the media director here one day this week who is arranging photo shoots and possibly the news to come cover Max and Addie's birthday party which we are quite excited about.  He kept saying 'this is a wonderful story of hope for Christmas time' and it was such a great reminder to me this week.  This year all four members of our family have had major surgery.  We got Max's CP diagnosis.  And we are leading up to Christmas with Max still having a ways to go to get out of the hospital and with my not having seen my Addie in a week.  It doesn't FEEL always like the heartwarming Christmas of my dreams.  But then I sometimes just have to look at it from another perspective and see what tremendous miracles have happened this year and what a wonderful place we are ending this year.  Sometimes I have to ignore the voice that reminds me all of all the things we still have to battle and deal with and just celebrate myself this hopeful beautiful story of two precious babes who beat the odds.  To embrace the story of hope in a time when there is a lot of tragedy. 

 
I pray today for all the families grieving, in CT and in hospitals around the county, and I thank God once again for saving my babies lives.

Wednesday, December 12, 2012

Post Op Day 1- Healing after Successful Surgeries!

Yesterday was a long but very successful day.  Al went to surgery nice and early.  He was in the operating room around 7am.  I spent a few more hours with Max and then took him down right around 10.  And then we waited.  And waited.  And waited.   We finally heard around 130pm that Al was done.  He had a tricky lumbar vein that made getting kidney out a longer than anticipated processs.  Then around 230, we heard that Max had the kidney in him and was peeing already! Which is of course the news we had been hoping for all day so we were elated.  We then had to wait another 3 hours to see either of them.  Finally about 530pm we saw Al who was awake and talking and in great spirits.  And around 6pm, we saw Max who was sedated, still on his breathing tube but looking peaceful and had good coloring. 

I ended up not staying the night because I got really sick during yesterday.  I had a cold when we left Houston and then got really messed up on the airplane with my ears blocking up really badly.  Then with all the extra stress it somehow developed into a sinus infection and by Monday night I was miserable.  I stayed at the hospital but hardly slept.  As soon as Max's doctors and nurses walked in, they were like oh you look bad.  Of course i was in the best place in some respects as Lynn, our PA, immediately got me on an antibiotic and checked on me throughout the day, giving my Tylenol when I then started running a fever.  Once we saw that both boys were stable, I was convinced I should leave the hospital for the night and get some rest.  I stayed with our transplant coordinator who took care of me and I got 10 hours sleep and at least feel a little better today, although still not well. Al's parents stayed with the boys to make sure they were ok last night.

Al is already wanting to get discharged and seems determined to be the best donor patient ever! He is certainly making me look pitiful- I am super glad I went first!! He is texting me funny videos and making jokes and enjoying eating lots of popsicles.  He does feel pain where his incision is and finds walking uncomfortable, as is expected.  But being an amazing patient.  Max is much the same, quite puffy from all the fluids he has been recieving and pretty relaxed with some heavy duty tranquilizers on board.  He is running occasional fevers which is pretty standard for Max but that is being followed carefully.  He will stay on the ventilator all day and hopefully just rest and pee.

Thank you so much for all the prayers for us.  It was such a long day but we are thrilled to have it past us.  Please continue to pray for Max that he will get stronger and better each day and closer to looking and feeling like himself.  I don't think I will include a picture of him yet as he is a bit sad with his breathing tube and puffiness but as soon as he is looking more like himself I will include pics of the brave boys.   

Monday, December 10, 2012

Max's last night on dialysis! Please share, pray and send us your love for tomorrow!

By my calculations, tonight will be Max's 530th night to spend on dialysis.  Since June 27, 2011 he has spent 15-22 hours a night hooked up to dialysis.  He has struggled on it with discomfort, reflux, vomitting and feeling chronically full.  He has been such a trooper and waited so patiently and tomorrow his day is finally here! Tomorrow Max gets his dad's kidney and he gets to pee and be freed from dialysis! When we did this in May with Addie, we were not sure just how much better life with a kidney would be.  Now Addie has shown us just what an amazing difference it makes.  And so we are so pleased that Max's day is here.  We do ask for lots and lots of prayers to surround Max, and Al too tomorrow.  And of course in the days that follow. 

We are blessed beyond words that we were both matches for our babies and tomorrow we become a one kidney family- a process we have been working towards for a very long time.  It was one of the greatest privileges of my life to give Addie my kidney and I know Al feels the same about doing this for Max.  Al will go back for surgery around 7am tomorrow (which is 9am Houston time and 2am Melbourne time).  He is having his surgery done laproscopically, instead of open like mine was. Max being much bigger than Addie was has made this less invasive technique possible and although he will have a sizeable incision and plenty of pain, his recovery should a bit easier, especially for walking etcetera.  The surgery is also fairly long and the surgeon predicts he will be in surgery for around 5 hours.  Max will go back to get started before Al is done, probably around 10am (noon in Houston, 5am in Melbourne).  And he will also have a several hour surgery.  They will both come back groggy and riding some pain meds tomorrow.  Max will remain on a ventilator for several days. 

We would appreciate prayers for all the details of tomorrow, for safe anaesthesia and surgery experiences for both of them.  That Max would begin making urine on the operating table, as his sister did, and for protection over his lungs and heart in the days following surgery.  We would appreciate prayer for minimal pain for both of them and effective management of pain meds for them.  And while you are praying, please say one for those of us waiting... for me and Al's parents here in California and also for Addie and my parents in Houston.  It is a nerve-wrecking day for all of us and we will all be feeling better 24 hours from now to have this past us.

Please feel free to share the link to this blog or just their names on Facebook or at work or with your friends.  If you have not send a message for Max, it is definitely not too late and messages tomorrow would certainly encourage us or just knowing that people are praying for them and thinking about us. It is so different being on the caretaker side and not the donor side this time and I will definitely be anxious tomorrow and will appreciate messages and support throughout the day.

We saw what a wonderful miracle transplant was for Addie and we love seeing what life it has breathed into her.  So tonight we pray for Max's miracle and that tomorrow will be the start of so many new adventures for our little man.   Thank you to everyone who has and continues to pray for my precious babies. 

Pictures of my heroes:



Saturday, December 8, 2012

All under one roof...

Addie and Max are fast asleep.  Al is finishing his packing.  I am all packed and distracting myself by watching Season 2 of Grey's Anatomy on DVD and trying to enjoy this last night for a while of my family all being together here in our home.  Tomorrow morning my parents pick up Addie and then Al and I load the plane with Max and meet his family in San Fran.  Tomorrow it all begins and I have spent today soaking up this beautiful calm before the storm.  Addie was particularly cheerful and delightful, laughing and smiling and making my heart so happy and at the same time so sad to be leaving her.  Max has been rosy pink and full of smiles, completely unaware of what is coming.  It has been a lovely day and it's hard to believe how long it will be before we have another one like it. Actually we will never have one exactly like this, we will have ones much better because when the boys are back and we are all reunited it will be without dialysis and with two healthy babies.

Sometimes in life you have to do something really hard to get to something totally wonderful. People ask us if we are so excited for Max's transplant.  We are so incredibly excited for what Max's transplant will do for him.  We are so excited for life after he has healed and what a wonderful change it will be for our family.  So, yes we are super excited for the end point.  But I can also tell you we are not excited for these next two weeks.  I am not excited for 2 weeks away from Addie.  She is my sunshine and my joy.  My heart is sad to be without her for 12 days.  Do not get me wrong, she is in great hands.  She will have a wonderful time.  Leaving her here with my parents is the selfless choice because it is completely what is best for her.  But for me, it's going to really hard. I am excited for what this surgery will bring about but not excited for surgery itself, for seeing both of my boys in pain, for long days and nights at the hospital, for the inevitable fears and concern.  It's a hard process for a wonderful purpose.  I pray that the next two weeks go quickly and that before I know it we will be through the hard scary tiring part and entering the exciting part of seeing Max better than ever. 

I know lots of people are praying for us.  Please pray for our travelling tomorrow and that Max and Al will both stay healthy the next two days leading up to surgery.  Of course we will be asking for lots of prayers on Tuesday but I will post again on Monday night with specifics about Tuesday.  Please also pray for Addie.  We are praying for protection of her health during her time away from me.  And please pray for stamina for my mom (and dad) and good restful sleep at nights as she has full time care of Addie these couple of weeks.  And for Al and I saying goodbye to Addie and getting nervous for Max these next couple of days.  We all need an extra dose of strength and resilience.

I have lots of wonderful photos of messages for Max that I am hoping to spend some time next week putting up on Facebook for everyone to enjoy.  I have been soaking up my Addie time and working hard to get school stuff together so I haven't put aside time to do that yet but I will have plenty of time next week.  If you haven't sent one, please still do.  Or post it on Tuesday on Facebook and tag me.  A lot of people did that last time and it really lifted our spirits on the day to log on and see all these pictures. I will post again Monday night a short specific prayer request/update on times etc for people to share.  I know last time lots of people shared our story the night before and I know all those extra prayers showered upon Addie and I were answered.  So stay tuned for a pre surgery update. 

And for now, back to my fake medical drama to distract me from all the real medical drama coming up soon.  And back to enjoying the peace of having all my little loves together with me under one roof.

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!