Sunday, January 15, 2012

Big decisions, confusing results and a wonderful party- our week in review

We had a wonderful day yesterday at Max and Addison's first birthday party! It was at my parents' house and we had 52 adults and 17 children come and it was a whirlwind of socializing and catching up with people for a couple of hours. We had a lot of people from our church who had or had not met Max and Addie but pray fervently come and get to see them. I had friends I work with now and also friends from when I lived here before Australia come. And we had nine special friends from our hospital come- 8 who took care of Max and Addie in the NICU and their wonderful kidney Dr S came as well. Max got to relive his NICU glory and spent the whole time being passed between his favorite nurses cuddling and smiling at them! Addie's highlight was when I finally let her play on the floor and people gathered around to watch her and she just would laugh out loud! She loved it! My only regret is that I didn't take pictures! I just had my hands full and totally forgot but that's ok- sometimes it's more important to live in the moment than to try and capture the moment so you can enjoy it later!

Yesterday was a great blessing to us particularly because it followed a very difficult week. We enjoyed spending a day reflecting on what all we've come through after many days of looking ahead of what all we have to get through. Starting on Monday, we realized it was going to be a big week as we are trying to work out what the best thing for Addie is with her still being on Hemo and transplant at our hospital not looking like it's going to happen very soon. All off my re-testing came back great and I have my official approval from the medical board to be Addie's donor. But, once the idea of transplant went from an idea to a reality, a lot of concerns arose. Addie is significantly smaller than the smallest baby they have ever done and it was the opinion of her doctors that the risks associated with that are probably greater than the risks with staying on dialysis and waiting (and we are looking at waiting a significant amount of time, perhaps a year). We were of course very disappointed and spent a lot of time this week both recovering from that disappointment and frustration and trying to wrap our heads around 'what now?'

I don't have the answer yet to what now. We are just trying to ask all the right questions. We had a really good meeting on Friday with Dr S and she is so supportive or our family and really trying to help us work out what is best for Addie. We are actually looking into an out of state transplant and going to potentially Boston or California to go through Harvard or Stanford medical schools where the surgeons have operated on a lot of little babies. This would allow Addie to transplant now which we think would be advantageous for her but without the risk of a team who is nervous and relatively inexperienced (at our hospital, the surgeon himself is experienced and confident but the teams working with him less so). Another alternative is that our doctor Dr S goes to a mayo clinic in Minnesota and follow a baby through a transplant and be further trained through that and come back and arrange Addie's transplant then. Of course, there's no real timeline for when that would happen so whether by the time it did, Addie would be a lot bigger anyway, we don't know. Possibly Dr S would come with us to Boston or California and actually be there through Addie's transplant which we would love. So right now the next step is looking at insurance and feasibility of the out of state option. We really don't even know if we CAN do it or if we think it's the best thing for our family overall. Addie and I (and of course then my mom as well) would be out of state for at least 2 months and so it's a lot to think about...

So I'll keep you informed as we navigate our way through this. In the meantime, for now Addie is staying on hemo. We may end up trying her back on her machine if it does look like we really won't transplant for a year. Please pray for wisdom for Dr S and for us. Unfortuntely there simply is no 'right' answer and no way to unequivocally know what would be the best. All the options have pros and cons and risks and benefits. So there's not an easy answer for the doctors or for us as parents. Only God knows what is truly going to be the right thing for Addie so we just pray as we sort through our options, that he will make it more and more clear to all of us what the best plan for the next year is for Addie.

Interestingly, Max is actually significantly bigger than Addie at the moment and closer to being the size they'd actually want a baby for transplant. However, Addie will still go first because Max's airway issues pose additional risks for surgery meaning that we will most likely be waiting to transplant him until his airway has hardened, which will be presumably another 6-12 months. We've tossed around the idea of trying to do both together if we do go out of state but right now every time my mind goes there, it kinda panics and feels overwhelmed. Al is getting some more of his donor testing done this week so we're continuing to move forward and leave that option open. But Max is doing well on dialysis and the idea of introducing a big risky surgery to a baby who is so stable just doesn't seem like the right coarse right now...

So that was part of our week. One other small thing which I'll write more on (and include a cute picture of) soon is that Addie is going to be getting glasses to correct her cross eyes which are actually a symptom of far sightedness. I won't lie and say it didn't break my heart some for my sweet little girl to now need hearing aids and glasses and I certainly didn't feel very happy about it Monday when we'd already been dealing with all the transplant issues. But, she will of course be adorable in her baby glasses. And it will fix her cross eyes and it won't be permanent (although she'll be wearing them for years and not merely months). So in light of everything else going on this week, it really did end up in perspective. So stay tuned for Addie in some adorable pink glasses...

Then there is our final and arguably biggest issue that we are facing and that is relating to Max and his MRI. We found out on Monday that there were abnormalities in his brain. (when it rains, it pours around here and we found all these things out on Monday!) We didn't really know much about what was there as they said we needed to talk to the neurologist. So on Friday we went straight from our long meeting with Dr S re out of state transplants to the neurologist. And even though we spent 90 minutes with the man and looked at like 50 MRI pictures, I still struggle to explain what we know. Partly because it's all very raw and emotional and partly just because it's all very confusing.

What we don't know is 1) a diagnosis... no idea why there are abnormalities on Max's brain or 2) a prognosis... we don't know what these will be mean for Max when he is older. So without a diagnosis or prognosis, we arguably don't know much still. We are getting blood work done on Wedneday to look at several possible diagnoses so we may eventually get a diagnosis (or we very well may not) and a diagnosis would help with a prognosis (although with most neurological disorders including the ones we are testing for, there is such a range in their functional outcome and such a range in what the lives of those that have them look like... that even then, I don't think a doctor will ever be able to tell us really what the future looks like for Max).

But what we do know is- there are several abnormal things on Max's brain that are contributing to his lack of motor skills and his general 'not seeming to be at the same place as his sister'. I wrote down all these random observations on the MRI and have tried googling them and just end up in all these medical journals with lots of big words I don't understand. The best overall summary I can give is just that Max's brain is underdeveloped and smaller than it should be. There's not really a specific place of brain damage as you would expect to see if he'd had a stroke or an episode of oxygen deprivation. The doctor said it appeared more 'chronic' than that. In particular, it looks like his frontal lobes are significantly smaller than they should be and there is a place where the lobes of his brain should meet and be closed and it's open. There's also some issues related to white matter and myelination. From looking back at previous MRIs, this seems to have been the case since he was born and probably was the case in utero. It is more pronounced and easy to recognize on his most recent MRI which was more thorough and done under anaethesia. The doctor was very clinical and just pointed everything out to us very bluntly. I have this fear about ever discussing doctors on my blog with it being public and I may form a great working relationship with this neurologist and he might follow my blog for years to come! So I'll just say that the information was given to us in a very detached manner and I'm not sure if that made it easier or harder.

He did say that Max doesn't seem to have a progressive problem. So Max's brain should not get 'worse'. Instead, he should continue to grow and develop. And physical therapy will help him. The neurologist described it as the 'tail wagging the dog' meaning that if the part of his brain commanding movement is not working properly at the moment, we can just train his body to do the movements through repetition and in the process, may actually strengthen that part of his brain as well. This doesn't work as well with adults but babies brains still have a lot of 'plasticity' or moldability. So I guess no matter what diagnosis or prognosis we may or may not ever get, our aswer is really the same and that is that there are reasons for Max's delays but we will keep believing in the very best outcome for him and fighting to do all we can to help him develop every skill he can.

If we had two kids a couple years apart, we would expect them to have different needs and be at different places in their development. And with twins, you expect them to have different personalities and different interests and to develop different strengths and in their own way. So, really it's no different than that- just on a bigger scale I suppose. Max and Addie are the same age but they are very different. And they have very different needs from us. And that's ok. Of course medically at least they'll always be compared to each other. I mean, every question at the neurologist regarding Max was followed by 'and what about his sister?' For all the Science geeks out there, Max has an inbuilt 'control group' in his twin sister who is 'neurotypical' (just a fancy way of saying neurologically normal). So we won't be able to avoid comparing them at times. But I think the most important thing Al and I can do is recognize them as two amazing individuals and embrace their own unique accomplishments. The other day, we saw that Max was batting at his inflatable penguin to make is bounce and we were so excited and praising him and Addie seemed to sense she was missing out on this moment so she crawled over, lifted the penguin over her heard, shook it violently and then crawled off with the penguin in tow. Did it make Max's batting at the penguin any less exciting? No, because purposeful and controlled arm movement is a great thing for Max and very hopeful progress. So we were stoked. Did it make Addie's ability to shake and crawl off with penguin any less adorable? No, (except for attention hogging and stealing of her brother's toys which we do need to work on!) because that's what she's doing right now and we're thrilled for her. They are both amazing and complicated and they both bring us great stress and great joy! Our journeys with them are sometimes similar and sometimes different but that is just parenthood. Children are never going to behave exactly as you expected and you learn that parenting real babies so much more difficult (and rewarding) than when you used to play house with dolls. Our issues are huge and the things we face are difficult and scary but ultimately we are just like any other parent loving and trying to figure out the kiddos we have!

So that's where we are now. And we didn't really share most of this with people this week because it was really important to me that Saturday at their birthday party we celebrate the miraculous year they have had and rejoice in all their accomplishments and how far they've come! It wasn't the time to focus on what all still lies ahead of us. And we really did celebrate and it was a wonderful day. And now this week and in the weeks ahead, we remember that joy and use our encouragement of how much they've come through to get us through the long days of facing our newest trails and our current dilemmas. I think the second year of their life may prove to be as eventful as their first but I know if we made it through last year as well as we did and were there looking healthy and happy with real genuine smiles yesterday, I can only assume we'll be celebrating just as hard and happily on the 2nd birthday. And maybe one day things will settle down and there won't be any more new diagnoses or huge medical decisions and while we'll welcome that day, for now... we'll just keep riding this rollercoaster and praying our way through the lows and praising our way through the highs!

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