Max and Addie's developmental issues are among my least favorite topics. I tend to much prefer to talk medical stuff to milestones. I would rather talk to you about tube feeding than about how Addie is doing with talking. Explaining peritoneal dialysis is way easier than explaining that at nearly two Max can not hold his head up. Developmental milestones can be a sensitive issue for any parent. I know I have friends who get worried when their perfectly normal child just doesn't do something on the same timeline as their friends kids. And in the world of Social media, we always know when everyone's kids are doing things so it can lead to this panic of why isn't my baby doing what my Facebook friends' babies are doing?!?
So I think the concern over development is far from unique to me. And really, I try not to get hung up on it. After all, developmental milestones are important to help you catch if something is wrong and we already know why Max and Addie are doing things differently. And developmental milestones are designed with a normal childhood experience in mine and not one where the child has had 13 surgeries and nearly a full year of hospitalization by age 2. It would be ridiculous for me to expect my children to do everything just like their healthy peers when their bodies have had other priorities. I don't think about milestones and worry or stress about them because I know our situation is unique.
But, I still want to see them hit these milestones and I still feel such relief when they do. Second to wanting Addie transplanted and healthy, I think there are few things I wanted like I wanted to see her walk. I knew all the reasons why she wasn't walking but when your 18 month old is still army crawling around and people ask you all the time 'is she walking?', you just long to see those steps. So when at 20 months, Addie took off walking, I think it was one of the most joyful moments of my life. I felt such pride and happiness and relief. And I still do. I marvel at her walking around. I am amazed by her and by what all she has been through and I love seeing her now running around the house. She suddenly doesn't seem younger than her peers anymore and she is starting to totally seem like a little 2 year old.
Addie's mobility is something we are extra thankful for because Max is not mobile. While Addie clearly had developmental delays, Max has developmental disabilities and that is a world of difference. With Addie we always knew it was a question of when. With Max, it is a question of if. Which is a harder situation. When we dwell on milestones with Max, it can become disheartening. So I read this great term on another blog and love it- 'celebrating inchstones'. Max may be a long way from some of his milestones but he is making huge progress for him. He's making all these little inchstones. And they are so exciting to see. And eventually they might add up and reach a milestone. But they may not and that's ok, because we can celebrate each inchstone for the miracle it is. We don't need to keep our sight on the mile markers because if we do, we might miss seeing and rejoicing in his inchstones. Like lately we have noticed Max tries to wave back at us when we wave at him. It's so exciting to see him be able to control his arm. And he can grab at his toys in his crib sometimes. And while he does not have head control, his trunk is so much stronger and we're finding he can stay straight and hold a sitting position when propped for photos. He pushes up when on his tummy. He uses his legs and pushes himself down his crib. He can make his hand reach yours and give you high fives. If you were to look only at the key milestones you would see he is not rolling or sitting or crawling and you might think then that he isn't developing. But he is. He is doing lots of little amazing things and we're learning to celebrate those.
I'm thankful today for every single bit of developmental progress my kids are making, for the milestones they hit and for each inchstone as well.
Sunday, November 4, 2012
Saturday, November 3, 2012
My Genetics major proved way too relevant!
My first year at college when I was picking my majors, I thought about what subjects I found most interesting and which subjects I tended to do well in and I ended up picking Genetics and Psychology. I had some ideas for how I would combine these areas, ranging from Genetics Counsellor to researching the genetics behind psychological conditions... to of course, where I ended up, teaching. I loved my majors and I loved learning about Genetics and Psychology and now I love teaching about them. I have always enjoyed being able to explain just how relevant the things I teach are to real life.
And then Genetics became a little bit too relevant. I think most people who are reading know that Max and Addie's kidney condition is genetic. But I do not think everyone really understands the genetics behind it. My dad routinely is shocked by the questions people ask him that show they don't understand the genetics of it. So I figured for today's post I would pop on my teacher hat and try and explain how they inherited Congenital Nephrotic Syndrome and then how that has affected all our family planning.
A single gene produces a protein called nephrin that enables you kidneys to correctly remove only waste. If you have that protein, your kidneys are like colanders with tiny holes that only filter out bad things. If you do not have that protein, your kidneys are like a collander with big giant holes that filter all of your good stuff out also. For that gene, there are two versions. Big N means you will make the protein and therefore have normal good kidneys. Little n means you cannot make the protein and therefore will have very bad kidneys. Every person has two copies of the gene- you got one from your mom and one from your dad. So you could be NN or Nn or nn. The big N is dominant and sufficient to make all the nephrin you need so you only need one big N to have totally completely normal kidneys. NN and Nn are both totally normal and you would never know the difference, unless you shipped your blood off and paid unreasonably amounts of money to be told which you are!
The difference with Nn is that they are called 'carriers' because they do have the bad version in there that they can pass on to their kids. Even being a carrier is very rare. It's slightly more common in Finland but here in America it's very unlikely. But as you are probably working out, it turns out Al and I are both Nn, we are both carriers. We had absolutely no idea. Our kidneys work perfectly. The fact that we happened to marry someone who is also a carrier is so very unlikely. In fact, so rare that the genetics team had to clarify multiple times that we could not possibly be related!
And then even with two carriers, the odds still favor having a healthy child. I have included a punnett square to try and demonstrate:
But basically 3 out of every 4 hypothetical children would get at least one big N and therefore be completely normal. Only 1 in 4 theoretically should get my little n and Al's little n and end up with bad kidneys. Mind you probability does not always predict reality. If you toss a coin 10 times, you should get 5 heads but you very well may not. So in theory, the odds that BOTH of our non-identical twins would end up being nn is only 1/16. But well that is exactly what happened.
Knowing their condition is completely genetic can be reassuring because it takes away any fear of blame. And it takes away uncertainty. With Max's neurological condition, we are so unsure of when, why, how things happened. But with their kidneys, we know exactly how it happened. And we know it was completely outside of our control and there is nothing we could have done differently. It just happened. And that can be such a relief to have such closure.
The difficult thing about it being a genetic condition is the impact it has had on our plans for our family. Al is one of four and has always wanted 4 children. I had only one sibling but he is so awesome that I always wanted more. So we had always planned to have 4 children. I had imagined being pregnant multiple times and having kids of different ages. But were we to have another child, it would have a 1/4 chance of having Congenital Nephrotic Syndrome. And while I feel tempted by that 75% chance of it not having bad kidneys, the 25% chance of having another child who would spend months in the NICU and need dialysis and ultimately transplant is just too high. As Al puts it, we're just out of kidneys to give. There are of course other options for building our family but they do not seem particularly feasible for us right now either. So by being a genetic condition, it has affected not only both of our children but it has affected our plans for potential other children as well...
BUT, and this is really important, we were given the most special wonderful blessing of all... TWINS! Had we had only one, we would not have had a second. And our one baby would never have had a sibling. God knew that we wouldn't be able to go through all this twice so He gave us two at once. We could do two babies in the NICU and 2 babies on dialysis when they happened at the same time. Having twins was the only way we ever could have handled two babies with this. It was the greatest blessing of our life that we got to have two children, that our babies have a sibling and we are thankful every day for our family. We may have thought we'd have more but now that we have our sweet boy and gorgeous girl, our family feels complete. So in the spirit of November and wanting every day to include what I am particularly thankful for... I am hugely thankful that God gave me two precious babies. And I'm also thankful that I did major in Genetics and do understand what all is going on. And that I can use my experiences to teach my students that yes, sometimes you do need to know Biology in the real world!
And then Genetics became a little bit too relevant. I think most people who are reading know that Max and Addie's kidney condition is genetic. But I do not think everyone really understands the genetics behind it. My dad routinely is shocked by the questions people ask him that show they don't understand the genetics of it. So I figured for today's post I would pop on my teacher hat and try and explain how they inherited Congenital Nephrotic Syndrome and then how that has affected all our family planning.
A single gene produces a protein called nephrin that enables you kidneys to correctly remove only waste. If you have that protein, your kidneys are like colanders with tiny holes that only filter out bad things. If you do not have that protein, your kidneys are like a collander with big giant holes that filter all of your good stuff out also. For that gene, there are two versions. Big N means you will make the protein and therefore have normal good kidneys. Little n means you cannot make the protein and therefore will have very bad kidneys. Every person has two copies of the gene- you got one from your mom and one from your dad. So you could be NN or Nn or nn. The big N is dominant and sufficient to make all the nephrin you need so you only need one big N to have totally completely normal kidneys. NN and Nn are both totally normal and you would never know the difference, unless you shipped your blood off and paid unreasonably amounts of money to be told which you are!
The difference with Nn is that they are called 'carriers' because they do have the bad version in there that they can pass on to their kids. Even being a carrier is very rare. It's slightly more common in Finland but here in America it's very unlikely. But as you are probably working out, it turns out Al and I are both Nn, we are both carriers. We had absolutely no idea. Our kidneys work perfectly. The fact that we happened to marry someone who is also a carrier is so very unlikely. In fact, so rare that the genetics team had to clarify multiple times that we could not possibly be related!
And then even with two carriers, the odds still favor having a healthy child. I have included a punnett square to try and demonstrate:
But basically 3 out of every 4 hypothetical children would get at least one big N and therefore be completely normal. Only 1 in 4 theoretically should get my little n and Al's little n and end up with bad kidneys. Mind you probability does not always predict reality. If you toss a coin 10 times, you should get 5 heads but you very well may not. So in theory, the odds that BOTH of our non-identical twins would end up being nn is only 1/16. But well that is exactly what happened.
Knowing their condition is completely genetic can be reassuring because it takes away any fear of blame. And it takes away uncertainty. With Max's neurological condition, we are so unsure of when, why, how things happened. But with their kidneys, we know exactly how it happened. And we know it was completely outside of our control and there is nothing we could have done differently. It just happened. And that can be such a relief to have such closure.
The difficult thing about it being a genetic condition is the impact it has had on our plans for our family. Al is one of four and has always wanted 4 children. I had only one sibling but he is so awesome that I always wanted more. So we had always planned to have 4 children. I had imagined being pregnant multiple times and having kids of different ages. But were we to have another child, it would have a 1/4 chance of having Congenital Nephrotic Syndrome. And while I feel tempted by that 75% chance of it not having bad kidneys, the 25% chance of having another child who would spend months in the NICU and need dialysis and ultimately transplant is just too high. As Al puts it, we're just out of kidneys to give. There are of course other options for building our family but they do not seem particularly feasible for us right now either. So by being a genetic condition, it has affected not only both of our children but it has affected our plans for potential other children as well...
BUT, and this is really important, we were given the most special wonderful blessing of all... TWINS! Had we had only one, we would not have had a second. And our one baby would never have had a sibling. God knew that we wouldn't be able to go through all this twice so He gave us two at once. We could do two babies in the NICU and 2 babies on dialysis when they happened at the same time. Having twins was the only way we ever could have handled two babies with this. It was the greatest blessing of our life that we got to have two children, that our babies have a sibling and we are thankful every day for our family. We may have thought we'd have more but now that we have our sweet boy and gorgeous girl, our family feels complete. So in the spirit of November and wanting every day to include what I am particularly thankful for... I am hugely thankful that God gave me two precious babies. And I'm also thankful that I did major in Genetics and do understand what all is going on. And that I can use my experiences to teach my students that yes, sometimes you do need to know Biology in the real world!
Friday, November 2, 2012
Our Pirate Princess
When I blog so infrequently, I always seem to need to focus on the big stuff like transplants and milestones and plans etcetera and so the smaller details seem to go by the wayside! So since I'm devoted to writing more I thought I'd write a whole post on Addie's eye since most people know parts of the story...
About a year ago, we noticed Addie's right eye turning in. We started going through the process of seeing doctors about it but our search for solutions for her eye got interrupted when she started struggling to breathe after Thanksgiving and we discovered all the fluid in her lungs. She came home in late December so in early January she finally saw an eye specialist. Interestingly what they said in January actually contradicts what her current eye doctor in July said so it's made it a confusing process to work out what she needs. In January, the doctor felt that glasses and then maybe surgery would be the best process to straighten her eye. The doctor told us that her vision was not poor enough that we would treat with glasses if her eyes were straight so we were using the glasses to try and straighten, more than for vision. SO... we got adorable pink glasses. And she did look precious in them!
But Addie is as headstrong and stubborn as they come and after maybe 3 weeks of wearing them pretty well, Addie decided she hated the glasses and would not wear them. She ripped them off her face with a vengeance. She tried to chew them. She tried to feed them to Lucy to chew them! And of course this coincided with a really stressful time in our lives. Max was having a surgery that we were very worried about and then she had a simple g tube placement and ended up in the PICU with severe high blood pressure for a week. She had to go on this awful medicine to get it under control that would make her exhausted for hours and then angry coming out of it. And she stayed on that medicine for close to a month until I finally just insisted we find a way around it. So given all that, we didn't fight her with glasses because she was either half asleep or fussy a lot of the time and when she was feeling good, we wanted her to enjoy that time. Sometimes doctors drive me crazy because they get annoyed we didn't deal with this last year but they just don't understand what all we have been dealing with and I know we made the right decisions for her at every point over the past year.
And the next few months became a blur of blood pressure issues, catheter replacements, potassium scares and preparing for transplant. We did meet again with the eye doctor to discuss the surgery which we knew was likely even had she worn her glasses. But given her myraid of health problems at that time and planned transplant, an optional surgery was definitely not what the doctors has in mind! After all, we had way bigger issues than her eye! So we focussed on the goal of getting Addie transplanted and safe and healthy and we succeded! We brought a happy, healthy little girl home and it was time to work on the non life or death issues like eyes and ears (hearing will have to be another post!)
So we took her to a new eye doctor that was associated with our hospital as we would want her to have surgery at our hospital due to her other medical issues and the risks of anaesthesia to her new kidney. The new doctor we met did a lot more testing of her version and really felt that the primary issue is that she was not using her right away and was slowly losing vision in it as result. She felt it critical that we make her use that eye and that we needed to do that before surgery. Surgery to straighten the eye is necessary but will be much more effective and long lasting if she has been in the habit of using the eye leading up to it. She felt that while glasses may help with seeing out of that right away since she has some small amount of vision loss, she did not think they were essential or as important of a battle to fight as the patch.
SO... according to research 3-4 hours of day of patching will sufficiently force her to use her right eye and strengthen it enough that she will start to use it even when the patch is off. The doctor wanted her to be patched every day for 3-4 hours for 6 months before we then surgically straighten it. We expressed our concern that Addie rips the patch off. Her solution... put her in restraints 4 hours a day. Like literal restraints. Baby Straight Jacket. And no, she wasn't kidding. Um, ok... not going to happen. So I decided I would just have to win the patch battle my way!
So for a week straight I was a one woman show for 4 hours a day. I sang and danced and provided so much stimulation and activity and ridiculousness that Addie was so distracted by what a fool her mother was being that she kept forgetting about the patch. Then she would remember and take it off or start to and I'd pop it back on and break into my own version of Elmo's song once again. It was a crazy week. BUT, after a week she stopped pulling off the patch. She accepted it. And now Al pops it on every morning and she never takes it off until he does for afternoon nap. Occasionally she'll pull it off in the car (and if she does, she tattles on herself and gives it back to you to put on). But mainly it is a battle I won!
There are a lot of battles I am losing at the moment with Miss Addie. Hearing Aids, talking, eating, fish-hooking her brother, peeing in her little potty, trying to remove diapers from the Diaper Genie... my losses seem to outnumber my wins most days! So when I have a win like the patch, man does it feel good!!! And her eye really is so much better. It still turns in some when the patch is off but not nearly as badly as before and a lot of the times her eyes even look straight. We will hopefully be doing the surgery in January. I look at her and neither the eye turning or patch bother me. I hardly notice them and I think she is just so adorable and perfect just as she is. But I know she will be insecure about it one day and she'll be happy to have pics with straight eyes and for all the things in our life that we cannot fix, this is thankfully one we can. So we will do that for her and be able to phase out the patch. Which will be awesome but I'll always look back at pictures of my adorable pirate princess and smile. I realized I've never posted or shared a picture of her with her patch on so here is a mini montage of the Addie and her patch...
I can wear cute South American sweaters and break through baby gates in my patch!
I can play basketball in my patch! (and also wearing my hearing aid because every now and then my mommy really is Supermom...!)
Elmo and I can swing in my patch!
I can look adorable and push toys into the trash can in my patch!
I can eat batter (and by eat I of course mean smear on my face and never actually swallow) in my patch!
I can go for car drives in my patch!
I can perform doctor duties on Cookie Monster in my patch (his lungs sound great, btw)
I can go grocery shopping and stock up on Jello in my patch!
About a year ago, we noticed Addie's right eye turning in. We started going through the process of seeing doctors about it but our search for solutions for her eye got interrupted when she started struggling to breathe after Thanksgiving and we discovered all the fluid in her lungs. She came home in late December so in early January she finally saw an eye specialist. Interestingly what they said in January actually contradicts what her current eye doctor in July said so it's made it a confusing process to work out what she needs. In January, the doctor felt that glasses and then maybe surgery would be the best process to straighten her eye. The doctor told us that her vision was not poor enough that we would treat with glasses if her eyes were straight so we were using the glasses to try and straighten, more than for vision. SO... we got adorable pink glasses. And she did look precious in them!
But Addie is as headstrong and stubborn as they come and after maybe 3 weeks of wearing them pretty well, Addie decided she hated the glasses and would not wear them. She ripped them off her face with a vengeance. She tried to chew them. She tried to feed them to Lucy to chew them! And of course this coincided with a really stressful time in our lives. Max was having a surgery that we were very worried about and then she had a simple g tube placement and ended up in the PICU with severe high blood pressure for a week. She had to go on this awful medicine to get it under control that would make her exhausted for hours and then angry coming out of it. And she stayed on that medicine for close to a month until I finally just insisted we find a way around it. So given all that, we didn't fight her with glasses because she was either half asleep or fussy a lot of the time and when she was feeling good, we wanted her to enjoy that time. Sometimes doctors drive me crazy because they get annoyed we didn't deal with this last year but they just don't understand what all we have been dealing with and I know we made the right decisions for her at every point over the past year.
And the next few months became a blur of blood pressure issues, catheter replacements, potassium scares and preparing for transplant. We did meet again with the eye doctor to discuss the surgery which we knew was likely even had she worn her glasses. But given her myraid of health problems at that time and planned transplant, an optional surgery was definitely not what the doctors has in mind! After all, we had way bigger issues than her eye! So we focussed on the goal of getting Addie transplanted and safe and healthy and we succeded! We brought a happy, healthy little girl home and it was time to work on the non life or death issues like eyes and ears (hearing will have to be another post!)
So we took her to a new eye doctor that was associated with our hospital as we would want her to have surgery at our hospital due to her other medical issues and the risks of anaesthesia to her new kidney. The new doctor we met did a lot more testing of her version and really felt that the primary issue is that she was not using her right away and was slowly losing vision in it as result. She felt it critical that we make her use that eye and that we needed to do that before surgery. Surgery to straighten the eye is necessary but will be much more effective and long lasting if she has been in the habit of using the eye leading up to it. She felt that while glasses may help with seeing out of that right away since she has some small amount of vision loss, she did not think they were essential or as important of a battle to fight as the patch.
SO... according to research 3-4 hours of day of patching will sufficiently force her to use her right eye and strengthen it enough that she will start to use it even when the patch is off. The doctor wanted her to be patched every day for 3-4 hours for 6 months before we then surgically straighten it. We expressed our concern that Addie rips the patch off. Her solution... put her in restraints 4 hours a day. Like literal restraints. Baby Straight Jacket. And no, she wasn't kidding. Um, ok... not going to happen. So I decided I would just have to win the patch battle my way!
So for a week straight I was a one woman show for 4 hours a day. I sang and danced and provided so much stimulation and activity and ridiculousness that Addie was so distracted by what a fool her mother was being that she kept forgetting about the patch. Then she would remember and take it off or start to and I'd pop it back on and break into my own version of Elmo's song once again. It was a crazy week. BUT, after a week she stopped pulling off the patch. She accepted it. And now Al pops it on every morning and she never takes it off until he does for afternoon nap. Occasionally she'll pull it off in the car (and if she does, she tattles on herself and gives it back to you to put on). But mainly it is a battle I won!
There are a lot of battles I am losing at the moment with Miss Addie. Hearing Aids, talking, eating, fish-hooking her brother, peeing in her little potty, trying to remove diapers from the Diaper Genie... my losses seem to outnumber my wins most days! So when I have a win like the patch, man does it feel good!!! And her eye really is so much better. It still turns in some when the patch is off but not nearly as badly as before and a lot of the times her eyes even look straight. We will hopefully be doing the surgery in January. I look at her and neither the eye turning or patch bother me. I hardly notice them and I think she is just so adorable and perfect just as she is. But I know she will be insecure about it one day and she'll be happy to have pics with straight eyes and for all the things in our life that we cannot fix, this is thankfully one we can. So we will do that for her and be able to phase out the patch. Which will be awesome but I'll always look back at pictures of my adorable pirate princess and smile. I realized I've never posted or shared a picture of her with her patch on so here is a mini montage of the Addie and her patch...
Thursday, November 1, 2012
Welcome November... bring on the blog posts!
November is here! And it is going to be a busy, crazy, intense, exciting and nerve-wrecking month for us. This month we celebrate 6 months post transplant for Addie, we take her to California for a biopsy, we have a ton of appointments for Max and will be making big decisions for his future, we have our very special visitor coming for Thanksgiving and assuming all goes well, planning for our second out of state transplant in one year. There will certainly be lots to keep people informed on and lots to be asking for prayer for!
So I am going to try and write on my blog more. There is like a November initiative among bloggers to blog every day and I'd love to manage to do that. But we'll see... it may be more like once a week but I'm going to aim for lots of posts. Some updates and some just writing more about daily life and everything that is on my mind during this busy month. There are so many things I have a lot to say about and yet so little energy or time for actually getting all my deep thoughts out on paper! But I want to try and share more about what it is really like to have been through all that we have, to be gearing up for what we are preparing for and living with such precious and complicated babies! So if you're interested, join me as I invite you a little further into our world!
For November 1st, some pictures of my little pumpkins...
Look at his face! He absolutely adores his sister! When she comes over to talk to him, it makes him squeal with happiness!
And thankfully for Max, his sister is starting love him also! She loves giving him kisses!
So I am going to try and write on my blog more. There is like a November initiative among bloggers to blog every day and I'd love to manage to do that. But we'll see... it may be more like once a week but I'm going to aim for lots of posts. Some updates and some just writing more about daily life and everything that is on my mind during this busy month. There are so many things I have a lot to say about and yet so little energy or time for actually getting all my deep thoughts out on paper! But I want to try and share more about what it is really like to have been through all that we have, to be gearing up for what we are preparing for and living with such precious and complicated babies! So if you're interested, join me as I invite you a little further into our world!
For November 1st, some pictures of my little pumpkins...
Saturday, October 27, 2012
Our Upcoming California trip
This has definitely been the longest I have gone without posting so an update is definitely due, especially with everything that is about to be happening in the next two months! We've had a really great start to this school year with stable happy babies. I have not had to be away from school a single day in 9 weeks which is wonderful. And on November 8, Addie will celebrate her half kidneyversary! Nearly 6 months post transplant and she is thriving and aside from some frustrating medication juggling and concerns, she has been complication free and absolutely loving her life free of dialysis! She will be reuniting with her California friends for a 6 month follow up and biopsy on November 13. While we don't necessarily look forward to the biopsy as she will be going under for it, we are so excited to see our team and show off Addie walking and with little curls and being a toddler. We are also glad that we will be able to get their advice and wisdom on her medications.
We are also excited to see our California friends as we will be introducing them to a very special person- Max! Max and Al are coming with us in November for Max's transplant evaluation. We will be there Sunday through Thursday and it is going to be a very busy and draining week for Max and us. We have a lot of testing to do in terms of scans and blood work for Max and Al and he also have several consults or meetings with specialists. The tests are part of the normal transplant work up- things that Addie and I went through to make sure there are no problems that we can foresee. The specialists are part of the complicated process of trying to work out if transplant now is really the best thing for Max. We are meeting with Pulmonology about his airway to ensure that a few days on a ventilator is not going to compromise his airway. His airway is SOOO much better than it was and he has not turned blue in months. The last time we had to bag him or force his airway open with our equipment was Feb!!! But better may not necessarily mean completely okay and so we need to make sure that a lengthy extubation and likely fluid retention and puffiness in the days following surgery will not injure his fragile airway.
The other specialist we will be seeing is neurology. As most of you know, following an abnormal MRI of his brain, we spent an exhuasting and difficult few months early this year meeting with genetics and neurology here in Texas. After lots of testing, Max was diagnosed with brain damage due to hypoxia, or oxygen deprivation, and it was decided that there did not seem to be an underlying genetic condition contributing to his neurological issues. Before transplant, however, we are going to meet with a new team in California and address these conclusions and have the opportunity for a second opinion. We will address how his neurological issues could impact recovery from transplant and ensure there are not significant risk factors being posed. We are so fortunate to be able to see some of the brighest and most amazing doctors at Stanford and to be able to get more input on Max. Having said that, we do go into these meetings and this week of testing with a fair degree of dread. Discussing Max's disabilities and prognosis is emotional and stressful and knowing that the issues discussed in these meeting will be part of the decision regarding when/if we transplant Max definitely adds some extra pressure to the situation. But in the end, we completely trust our team at Stanford and we know that they will reach the best conclusion for Max.
So... we face all of that Nov 12-15 in California. My mom is coming with the four of us which will be so wonderful because it means Addie will not have to go to all the meetings and I can focus on helping the boys. It will be a busy stressful week so please keep us in your prayers. The wonderful thing is that we come back Thursday night and Friday my best friend Hannah arrives! All the way from Australia! With precious Heidi! We are so happy that there is a big huge bright light waiting for us at the end of the long week. She and Heidi will be with us for 9 days over Thanksgiving week. So I will have 9 days off with my family, including Adam, and Hannah and Heidi! I will get the chance to laugh and unwind before we head into an even more crazy December...
If Stanford does decide Max is ready for transplant, which we certainly hope and suspect he is... then we have a 'pencilled in' surgery date for him of December 11. We pretty much live with Plan A, Plan B at the moment. Plan A is that we transplant Max in December and Plan B is that we do not. We are going forward as if Plan A is going to happen, even though we know there is a chance it will not. But with Plan A, Al's mom and dad arrive from Australia in CA on Dec 9. Al, Max and I will meet them there that same day. Addie will stay in Texas with my parents and no doubt enjoy getting thoroughly spoiled. She loves her days at their house so she will be well taken care of. Al and Max would have surgery on the 11th and my in laws and I would take care of the boys. Although there was some nervousness going into my surgery, I definitely think my anxiety and dread is higher knowing I'll be the caregiver rather than the donor. I have a newfound appreciation for what my mom did for Addie and I as I prepare to take on caring for my boys.
On December 21, my parents will bring Addie out to California, just in time for their 2nd birthday! We would spend Christmas with my parents and brother and Al's parents and feel very blessed to have this unique opportunity to spend the holidays with both of our families. We would all stick around for a while and after the first week in January, Addie and I would return to Texas for me to go back to work while the boys continue to recover in CA until some time in February.
It will be a scary and intense couple of months but I know it'll be ok. After all, we've been through some pretty scary stuff. And we survived. Last December we spent 3 weeks in the PICU with Addie losing dialysis access and having to go on Hemo. It was unknown and scary and exhausting but we made it and she is in this completely better place. So I figured we handled 3 scary PICU weeks last December so this December, we can handle whatever Max needs us to. Especially when it is all for the amazing goal of a dialysis free life for us and that is definitely going to make it all worthwhile.
And as for Plan B, well... we'll just deal with that if it comes to it. It may mean just waiting some time, it may mean making some changes but whatever it means, we can always come to terms with that if we have to. But since we are hoping and praying for Plan A, we're focusing our practical and emotional energy on preparing for that!
Stay tuned for more updates, especially in November when we have had Max's eval and we know for sure what is happening. We would really appreciate prayer and support over the coming weeks as we prepare for our week in California in November.
And to end with... some cute fall photos...
We are also excited to see our California friends as we will be introducing them to a very special person- Max! Max and Al are coming with us in November for Max's transplant evaluation. We will be there Sunday through Thursday and it is going to be a very busy and draining week for Max and us. We have a lot of testing to do in terms of scans and blood work for Max and Al and he also have several consults or meetings with specialists. The tests are part of the normal transplant work up- things that Addie and I went through to make sure there are no problems that we can foresee. The specialists are part of the complicated process of trying to work out if transplant now is really the best thing for Max. We are meeting with Pulmonology about his airway to ensure that a few days on a ventilator is not going to compromise his airway. His airway is SOOO much better than it was and he has not turned blue in months. The last time we had to bag him or force his airway open with our equipment was Feb!!! But better may not necessarily mean completely okay and so we need to make sure that a lengthy extubation and likely fluid retention and puffiness in the days following surgery will not injure his fragile airway.
The other specialist we will be seeing is neurology. As most of you know, following an abnormal MRI of his brain, we spent an exhuasting and difficult few months early this year meeting with genetics and neurology here in Texas. After lots of testing, Max was diagnosed with brain damage due to hypoxia, or oxygen deprivation, and it was decided that there did not seem to be an underlying genetic condition contributing to his neurological issues. Before transplant, however, we are going to meet with a new team in California and address these conclusions and have the opportunity for a second opinion. We will address how his neurological issues could impact recovery from transplant and ensure there are not significant risk factors being posed. We are so fortunate to be able to see some of the brighest and most amazing doctors at Stanford and to be able to get more input on Max. Having said that, we do go into these meetings and this week of testing with a fair degree of dread. Discussing Max's disabilities and prognosis is emotional and stressful and knowing that the issues discussed in these meeting will be part of the decision regarding when/if we transplant Max definitely adds some extra pressure to the situation. But in the end, we completely trust our team at Stanford and we know that they will reach the best conclusion for Max.
So... we face all of that Nov 12-15 in California. My mom is coming with the four of us which will be so wonderful because it means Addie will not have to go to all the meetings and I can focus on helping the boys. It will be a busy stressful week so please keep us in your prayers. The wonderful thing is that we come back Thursday night and Friday my best friend Hannah arrives! All the way from Australia! With precious Heidi! We are so happy that there is a big huge bright light waiting for us at the end of the long week. She and Heidi will be with us for 9 days over Thanksgiving week. So I will have 9 days off with my family, including Adam, and Hannah and Heidi! I will get the chance to laugh and unwind before we head into an even more crazy December...
If Stanford does decide Max is ready for transplant, which we certainly hope and suspect he is... then we have a 'pencilled in' surgery date for him of December 11. We pretty much live with Plan A, Plan B at the moment. Plan A is that we transplant Max in December and Plan B is that we do not. We are going forward as if Plan A is going to happen, even though we know there is a chance it will not. But with Plan A, Al's mom and dad arrive from Australia in CA on Dec 9. Al, Max and I will meet them there that same day. Addie will stay in Texas with my parents and no doubt enjoy getting thoroughly spoiled. She loves her days at their house so she will be well taken care of. Al and Max would have surgery on the 11th and my in laws and I would take care of the boys. Although there was some nervousness going into my surgery, I definitely think my anxiety and dread is higher knowing I'll be the caregiver rather than the donor. I have a newfound appreciation for what my mom did for Addie and I as I prepare to take on caring for my boys.
On December 21, my parents will bring Addie out to California, just in time for their 2nd birthday! We would spend Christmas with my parents and brother and Al's parents and feel very blessed to have this unique opportunity to spend the holidays with both of our families. We would all stick around for a while and after the first week in January, Addie and I would return to Texas for me to go back to work while the boys continue to recover in CA until some time in February.
It will be a scary and intense couple of months but I know it'll be ok. After all, we've been through some pretty scary stuff. And we survived. Last December we spent 3 weeks in the PICU with Addie losing dialysis access and having to go on Hemo. It was unknown and scary and exhausting but we made it and she is in this completely better place. So I figured we handled 3 scary PICU weeks last December so this December, we can handle whatever Max needs us to. Especially when it is all for the amazing goal of a dialysis free life for us and that is definitely going to make it all worthwhile.
And as for Plan B, well... we'll just deal with that if it comes to it. It may mean just waiting some time, it may mean making some changes but whatever it means, we can always come to terms with that if we have to. But since we are hoping and praying for Plan A, we're focusing our practical and emotional energy on preparing for that!
Stay tuned for more updates, especially in November when we have had Max's eval and we know for sure what is happening. We would really appreciate prayer and support over the coming weeks as we prepare for our week in California in November.
And to end with... some cute fall photos...
Friday, August 24, 2012
Our Happy Healthy Summer
It's been 7 weeks since Addie and I came back to Houston and I've just finished my first week back at school. I have been meaning to post for weeks and have just been caught up in playing with the babies and getting our house and life organized for me to go back to work. We had a wonderful summer together. Both babies have been healthy and happy. Aside from check up visits, we have had no hospital trips, no fevers, no dramas. We managed to have 2 sets of family pictures taken, we took the babies on their first family vacation and stayed in Galveston with my parents and Adam for a week, and we enjoyed lots of lazy mornings, eating Cinnamon rolls all in our PJs mid morning. We had these summer days that I had always imagined when I thought about being a teacher and having kids and enjoying our summer together. I also got a lot done in terms of seeing specialists and working on getting medicaid and organizing things so I have felt productive. We enjoyed time with my family and with friends, even working out the art of having friends over for dinner once the babies go down to sleep. After a crazy start to parenthood, Al and I both enjoyed a lot of days of feeling like a 'normal' family, all home together!
Addie is doing so extremely well. She continues to amaze me and all my expectations of life after transplant have been so far exceeded. She has been healthy and uncomplicated (from a transplant standpoint, at least!) She goes for weekly check ups and has a ball. I really think her hospital days are her favorite day of the week and why not? Everyone adores her and plays with her and there are new toys and things to explore there. She is still peeing like there is no tomorrow and all her labs look wonderful. In terms of her other medical challenges, we have been able to start to focus on some of these other concerns now that she is so much healthier. She is currently wearing a patch 4 hours a day to strengthen her weak eye. She is actually being really great about it. I had to work really hard the first week and keep her distracted but now she is very tolerant of it and rarely pulls it off. We expect her to need surgery to keep the eye straight but the patch is ensuring she does not lose vision in that eye. She is also SUPPOSED to be wearing hearing aids, or at least one hearing aid. We struggle to really get clear results in hearing tests but it seems her left ear is close to normal and her right ear has moderate hearing loss. Addie hates her hearing aids and pulls them off as fast as we can put them on. So we'd love prayers that we will figure out how to keep her hearing aids on her. Eating is still a struggle as Addie has no desire to eat so we are working with a food therapist for her and just hoping, waiting and praying for her appetite to form. In the meantime, her G tube is wonderful and keeps her full and hydrated and feeling great.
Developmentally Addie has done so well since her transplant. Despite her hearing loss, she is doing so much babbling and her language recognition is age appropriate according to her evaluations. She can point to about 5-10 body parts, she knows the names of all her toys, follows a lot of commands (when she feels like it) and knows the names of all the significant adults and dogs in her life. She does not say words reliably however. She has just started walking and is doing great, walking across a whole room, carrying objects while walking and turning corners without falling. When we left for CA just over three months ago she was barely cruising and not yet pulling up so we've been thrilled to see her doing some great catch up. She will continue to get physical and speech therapy and we know she'll be caught up before too long. Addie had a really rough first 18 months of life and spent so much time in a hospital bed. It definitely took its toll on her and her development but she is feeling really great now and making up for lost time.
Max is enjoying having his mom and sister back home. He has had a very stable summer, tolerating his dialysis really well. He does throw up A LOT- like 5 times a day or so. And he has to spend almost 17 hours connected to his machine so there are certainly things that make him uncomfortable and not as happy as we'd like. BUT, he has not had any complications or problems and for that we are most grateful. We are pursuing transplant for him because we do think it would open doors for more therapies, more activity, more inclusion in family activities and less vomiting and discomfort. I think it would make Max happier to be off dialysis. So, we would like to transplant him as soon as HE is ready. We know we are ready but what is most important is working out if he is strong enough to go through that big of a surgery and change. Our transplant team at Stanford will be evaluating Max and he will see a lot of specialists and have a lot of tests run so we can make sure we make the right decision for him. We are taking him to California in early November to meet the doctors and specialists. Addie needs to go then for her 6 month follow up and biopsy so we'll do both in one trip. And if Al and Max's cross match shows Al is a good match AND the team feels Max is ready for transplant, we will move forward and transplant him in December.
We hope and pray that this will all work out and that Max will have a kidney and be dialysis free by his 2nd birthday. But, we also know it may not be the right time yet for Max and I feel very much at peace that the right decision will end up being made for Max. When we thought Addie would transplant in January and then the hospital decided not to transplant her, I was absolutely devastated. It felt like this terrible set back. But what it ended up meaning was that Addie got to get stronger and we got to transplant her at Stanford. Which was totally the best place for her to be. And we had a wonderful time in Cali and made some friends that we love and are so grateful to have met. So, no regrets at all now that it didn't work out in Jan. So I am just taking that as a lesson as we go through the same process with Max. I believe he will get transplanted when and how it is best for him. God has a plan for Max and his transplant. I would love for it to be this December and we will take all the steps for that to happen. But if it it isn't, although we will be disappointed, we will trust God and trust our doctors that it would not have been best for Max and we will wait until we are confident that we can safely transplant him.
Developmentally, Max continues to make small but significant strides. He is gaining more controlled use of his arms and pushes his upper body up more and up. He still does not have head control and cannot make his head go to midline and that certainly makes other milestones like rolling or sitting difficult. We certainly hope that he'll make some big improvements after he does get the chance to transplant. However, we also know his developmental delays are very different to Addie's and have a neurological basis so we expect progress to continue to be slow and steady but present and important.
It has been such a tremendous struggle for me trying to come to terms with everything the doctors have told us about Max's brain and what we should expect. As you know if you've been reading this blog for a while, we have been told that Max will likely never walk or talk or have full cognitive functioning. I have found it difficult to know how to accept things and not be in denial... and yet hold on to the hope that we need to have. I think initially I just would oscillate between optimistic denial and defeated acceptance. But recently I am learning that acceptance and hope are not opposites and that I can live with both. I will never stop hoping for miracles for Max and I will never stop believing that he can exceeed everyone's expectations. But I have also accepted that he is likely to have significant disabilities for at least a very long time. I have accepted that he is not going to develop at any sort of normal rate and that as a result he is going to have some very special needs. And I know and expect all that and am okay with all that. It's not what we would have chosen for Max and it is certainly sad and upsetting BUT we're still okay and Max's life and our lives are still going to be happy. I hope Max improves but I don't NEED him to. We will enjoy our life with Max even if he makes no developmental progress. In fact when we were having a fun discussion with my parents the other day about taking the kids to Disney World one day, someone made a random comment about Max being in a wheelchair and we all smiled and continued discussing. A few months ago it would have made us all so sad to think that Max would be in a wheelchair and not running around with Addie. We would have avoided even talking about the future and trips because of how sad that idea was. But not now. We're realizing now that Max will be there, smiling away at all the characters and loving his time with us. He will be happy. And so therefore so will we. Max's disabilities haven't meant saying goodbye to any of our dreams or plans. They just mean knowing they may look a little bit different.
So yeah, that's life lately with us! I will keep trying to post updates as we have transplant news for Max as well as general updates. We really appreciate the interest in our babies and all the support and friendship.
What I have to sit next to my twin?!?
Here Max can wear my bow today
Max loves Addie so much even when she tries to literally shove him out of her way
Addie is doing so extremely well. She continues to amaze me and all my expectations of life after transplant have been so far exceeded. She has been healthy and uncomplicated (from a transplant standpoint, at least!) She goes for weekly check ups and has a ball. I really think her hospital days are her favorite day of the week and why not? Everyone adores her and plays with her and there are new toys and things to explore there. She is still peeing like there is no tomorrow and all her labs look wonderful. In terms of her other medical challenges, we have been able to start to focus on some of these other concerns now that she is so much healthier. She is currently wearing a patch 4 hours a day to strengthen her weak eye. She is actually being really great about it. I had to work really hard the first week and keep her distracted but now she is very tolerant of it and rarely pulls it off. We expect her to need surgery to keep the eye straight but the patch is ensuring she does not lose vision in that eye. She is also SUPPOSED to be wearing hearing aids, or at least one hearing aid. We struggle to really get clear results in hearing tests but it seems her left ear is close to normal and her right ear has moderate hearing loss. Addie hates her hearing aids and pulls them off as fast as we can put them on. So we'd love prayers that we will figure out how to keep her hearing aids on her. Eating is still a struggle as Addie has no desire to eat so we are working with a food therapist for her and just hoping, waiting and praying for her appetite to form. In the meantime, her G tube is wonderful and keeps her full and hydrated and feeling great.
Developmentally Addie has done so well since her transplant. Despite her hearing loss, she is doing so much babbling and her language recognition is age appropriate according to her evaluations. She can point to about 5-10 body parts, she knows the names of all her toys, follows a lot of commands (when she feels like it) and knows the names of all the significant adults and dogs in her life. She does not say words reliably however. She has just started walking and is doing great, walking across a whole room, carrying objects while walking and turning corners without falling. When we left for CA just over three months ago she was barely cruising and not yet pulling up so we've been thrilled to see her doing some great catch up. She will continue to get physical and speech therapy and we know she'll be caught up before too long. Addie had a really rough first 18 months of life and spent so much time in a hospital bed. It definitely took its toll on her and her development but she is feeling really great now and making up for lost time.
Max is enjoying having his mom and sister back home. He has had a very stable summer, tolerating his dialysis really well. He does throw up A LOT- like 5 times a day or so. And he has to spend almost 17 hours connected to his machine so there are certainly things that make him uncomfortable and not as happy as we'd like. BUT, he has not had any complications or problems and for that we are most grateful. We are pursuing transplant for him because we do think it would open doors for more therapies, more activity, more inclusion in family activities and less vomiting and discomfort. I think it would make Max happier to be off dialysis. So, we would like to transplant him as soon as HE is ready. We know we are ready but what is most important is working out if he is strong enough to go through that big of a surgery and change. Our transplant team at Stanford will be evaluating Max and he will see a lot of specialists and have a lot of tests run so we can make sure we make the right decision for him. We are taking him to California in early November to meet the doctors and specialists. Addie needs to go then for her 6 month follow up and biopsy so we'll do both in one trip. And if Al and Max's cross match shows Al is a good match AND the team feels Max is ready for transplant, we will move forward and transplant him in December.
We hope and pray that this will all work out and that Max will have a kidney and be dialysis free by his 2nd birthday. But, we also know it may not be the right time yet for Max and I feel very much at peace that the right decision will end up being made for Max. When we thought Addie would transplant in January and then the hospital decided not to transplant her, I was absolutely devastated. It felt like this terrible set back. But what it ended up meaning was that Addie got to get stronger and we got to transplant her at Stanford. Which was totally the best place for her to be. And we had a wonderful time in Cali and made some friends that we love and are so grateful to have met. So, no regrets at all now that it didn't work out in Jan. So I am just taking that as a lesson as we go through the same process with Max. I believe he will get transplanted when and how it is best for him. God has a plan for Max and his transplant. I would love for it to be this December and we will take all the steps for that to happen. But if it it isn't, although we will be disappointed, we will trust God and trust our doctors that it would not have been best for Max and we will wait until we are confident that we can safely transplant him.
Developmentally, Max continues to make small but significant strides. He is gaining more controlled use of his arms and pushes his upper body up more and up. He still does not have head control and cannot make his head go to midline and that certainly makes other milestones like rolling or sitting difficult. We certainly hope that he'll make some big improvements after he does get the chance to transplant. However, we also know his developmental delays are very different to Addie's and have a neurological basis so we expect progress to continue to be slow and steady but present and important.
It has been such a tremendous struggle for me trying to come to terms with everything the doctors have told us about Max's brain and what we should expect. As you know if you've been reading this blog for a while, we have been told that Max will likely never walk or talk or have full cognitive functioning. I have found it difficult to know how to accept things and not be in denial... and yet hold on to the hope that we need to have. I think initially I just would oscillate between optimistic denial and defeated acceptance. But recently I am learning that acceptance and hope are not opposites and that I can live with both. I will never stop hoping for miracles for Max and I will never stop believing that he can exceeed everyone's expectations. But I have also accepted that he is likely to have significant disabilities for at least a very long time. I have accepted that he is not going to develop at any sort of normal rate and that as a result he is going to have some very special needs. And I know and expect all that and am okay with all that. It's not what we would have chosen for Max and it is certainly sad and upsetting BUT we're still okay and Max's life and our lives are still going to be happy. I hope Max improves but I don't NEED him to. We will enjoy our life with Max even if he makes no developmental progress. In fact when we were having a fun discussion with my parents the other day about taking the kids to Disney World one day, someone made a random comment about Max being in a wheelchair and we all smiled and continued discussing. A few months ago it would have made us all so sad to think that Max would be in a wheelchair and not running around with Addie. We would have avoided even talking about the future and trips because of how sad that idea was. But not now. We're realizing now that Max will be there, smiling away at all the characters and loving his time with us. He will be happy. And so therefore so will we. Max's disabilities haven't meant saying goodbye to any of our dreams or plans. They just mean knowing they may look a little bit different.
So yeah, that's life lately with us! I will keep trying to post updates as we have transplant news for Max as well as general updates. We really appreciate the interest in our babies and all the support and friendship.
Monday, July 2, 2012
THREE YEARS AGO TODAY...
THREE YEARS AGO TODAY... was the happiest day of my life. I married my best friend 3 years ago and vowed for better or worse, having no idea just how much the next three years would have in store. I look back at photos and sometimes hardly recognize myself (mainly because wow, I was actually tan!) I look back and think we look so young, although we really were not that young. But we were so idealistic and full of big dreams and big ideas. We had packed a few suitcases and quit our jobs and moved from Australia to Houston and bought a beautiful house and we were going to fill that house up with puppies and babies! And here we are now, 3 years later and we have one puppy with enough personality for four and 2 babies who have managed to totally fill up our house and our hearts. This blog has mainly been about Max and Addie but of course there would be no Max and Addie were there not first Al and Steph so I decided to tell the beginning of their story with our story...
I met Alister in high school in Australia and we started dating at the very beginning of 2000- twelve and a half years ago now. We have said many times how incredibly grateful we are that we had our college years and our young carefree years together. We hold very dear to our hearts our memories of being 18 year old kids with nothing to do but occasionally study for an exam or write a paper. We had a wonderful time together. Al is so laid back and spontaneous and he brought out this great side in me and taught me how to live in the moment and follow my heart. We grew up together and finished college and started jobs and changed jobs and had our ups and downs figuring out exactly what we wanted for our futures separate and together. By the time we got engaged 8 years into our relationship, we knew that we were what we wanted for our future.
Newly engaged, we formulated our amazing plan... we were going to move to Texas and buy a house. I wanted to be near my parents and we thought we'd try the whole American family thing. We were going to move there, get jobs right away, buy a great house, get some dogs, get married and then start popping out those babies. We really thought we had it all figured out. We were so excited. We headed off to Houston, Texas with so much hope and expectation we were just about to burst! And 6 months into our move here, our family and friends from all over the world came out and we had this amazing wedding week. It was so much fun and we just loved every moment. The parties leading up to the wedding were great, the wedding was beautiful and being surrounded by all our family and friends who are normally so dispersed was such a special time. I love anniversaries because it's a great excuse to look back at all the photos and remember all the details and enjoy it all over again.
ONE YEAR AGO TODAY... Addison was in congestive heart failure. We actually wouldn't get that diagnosis for two more days but she was incredibly sick. And we were scared out of our minds. And confused and overwhelmed. It had been less than two weeks since the babies had their kidneys removed and Addison was clearly not doing well on dialysis. We didn't know why or what to do for her. The babies had been in the NICU for 6 months at this point and we were really not very close to getting them home and suddenly Addie was sicker than she's ever been. It was the worst time of my entire life. Al and I quickly went and got some Mexican food and then spent the night sitting next to the babies, worrying and sleeping in our Ronald McDonald house room.
Our dreams and plans seemed so far away and our life seemed so tiring and scary. But you know, we survived it. All of us. Together. We found a way to hang in there and sometimes even laugh along the way. Through 2 more months in the NICU. Through bringing our babies home on dialysis and figuring that out. Through Addie getting sick again on PD and having to go on Hemo. Through finding out about Max's brain. Through a lot of things that we never could have imagined making it through. It's not the love story you envision but it is a tremendous love story to live all of that together.
AND TODAY... we celebrate our 3 year anniversary in two separate states but happy and full of HOPE. Our baby girl who was fighting for her life a year ago is just doing amazing. She is healthy and has this new life and is just bubbling over with joy. Our sweet Max is so much stronger than ever, no longer turning blue and will be getting a kidney within a year. We may not be the idealistic obliviously happy people we were 3 years ago but we are also not the scared overwhelmed people we were one year ago. We have survived 'worse' and 'in sickness' and looking forward to maybe some 'better' and 'in health'. And what's more... We have worked out that our life can look absolutely nothing like our plan and our dreams and still be everything you need. We have learned that happiness and love just don't always look how we had envisioned.
JULY 3, 2009... a perfect day
I met Alister in high school in Australia and we started dating at the very beginning of 2000- twelve and a half years ago now. We have said many times how incredibly grateful we are that we had our college years and our young carefree years together. We hold very dear to our hearts our memories of being 18 year old kids with nothing to do but occasionally study for an exam or write a paper. We had a wonderful time together. Al is so laid back and spontaneous and he brought out this great side in me and taught me how to live in the moment and follow my heart. We grew up together and finished college and started jobs and changed jobs and had our ups and downs figuring out exactly what we wanted for our futures separate and together. By the time we got engaged 8 years into our relationship, we knew that we were what we wanted for our future.
Engagement Photo
Newly engaged, we formulated our amazing plan... we were going to move to Texas and buy a house. I wanted to be near my parents and we thought we'd try the whole American family thing. We were going to move there, get jobs right away, buy a great house, get some dogs, get married and then start popping out those babies. We really thought we had it all figured out. We were so excited. We headed off to Houston, Texas with so much hope and expectation we were just about to burst! And 6 months into our move here, our family and friends from all over the world came out and we had this amazing wedding week. It was so much fun and we just loved every moment. The parties leading up to the wedding were great, the wedding was beautiful and being surrounded by all our family and friends who are normally so dispersed was such a special time. I love anniversaries because it's a great excuse to look back at all the photos and remember all the details and enjoy it all over again.
Dad walking me down the aisle
Wedding Party
I now pronounce you husband and wife
Party Time!
Wedding over... let the marriage part begin....
TWO YEARS AGO TODAY.... I was pregnant with twins! Our first year of marriage was honestly nothing quite like we had expected. Our dream and our plan was really very hopeful and didn't really consider that things like finding new jobs and getting pregnant could actually be more difficult than anticipated. So our first year of marriage was realizing that maybe everything wasn't going to go according to the formula and road map that we had set out for ourselves. Al not being able to get a full time job and having trouble conceiving were difficult things for us in that first year. But on July 3, 2010 I was pregnant with twins and Al finally had his permanent residency secured and we just knew things were turning around. We went to the movies on our anniversary and saw whatever Twilight movie was out of the time (because we are super cool) and I sat nauseous through dinner... but oh so happy! Two babies on the way and back on track to our all our dreams and plans coming true...
Ok so I wasn't really showing like that at 6 weeks pregnant on my anniversary, I promise! Just the only pregnant photo I could find!
ONE YEAR AGO TODAY... Addison was in congestive heart failure. We actually wouldn't get that diagnosis for two more days but she was incredibly sick. And we were scared out of our minds. And confused and overwhelmed. It had been less than two weeks since the babies had their kidneys removed and Addison was clearly not doing well on dialysis. We didn't know why or what to do for her. The babies had been in the NICU for 6 months at this point and we were really not very close to getting them home and suddenly Addie was sicker than she's ever been. It was the worst time of my entire life. Al and I quickly went and got some Mexican food and then spent the night sitting next to the babies, worrying and sleeping in our Ronald McDonald house room.
Taken on our anniversary last year
Our dreams and plans seemed so far away and our life seemed so tiring and scary. But you know, we survived it. All of us. Together. We found a way to hang in there and sometimes even laugh along the way. Through 2 more months in the NICU. Through bringing our babies home on dialysis and figuring that out. Through Addie getting sick again on PD and having to go on Hemo. Through finding out about Max's brain. Through a lot of things that we never could have imagined making it through. It's not the love story you envision but it is a tremendous love story to live all of that together.
AND TODAY... we celebrate our 3 year anniversary in two separate states but happy and full of HOPE. Our baby girl who was fighting for her life a year ago is just doing amazing. She is healthy and has this new life and is just bubbling over with joy. Our sweet Max is so much stronger than ever, no longer turning blue and will be getting a kidney within a year. We may not be the idealistic obliviously happy people we were 3 years ago but we are also not the scared overwhelmed people we were one year ago. We have survived 'worse' and 'in sickness' and looking forward to maybe some 'better' and 'in health'. And what's more... We have worked out that our life can look absolutely nothing like our plan and our dreams and still be everything you need. We have learned that happiness and love just don't always look how we had envisioned.
Happiness and Love...
Bringing on the better...
It is a very Happy Anniversary indeed.
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