One Year Ago Today- the day our world turned upside down

One year ago today we found out that Max and Addison had Congenital Nephrotic Syndrome. I had no blog at that point and wasn't even ready to put anything about it on Facebook for over a month. My mom emailed people and asked them for prayer but pretty much I didn't talk about it with anyone other than Hannah and a few texts here or there to other friends. Eventually we started to be able to talk about it and not feel sick. I still sweat if I try to talk to my students about it because well, 14 year olds do have a way of not being the most emotionally sensitive people. But I can generally talk about it now without much emotion or stress. And since I didn't get to share what all we went through a year ago with many people, I thought I'd write about it now a year later. Better late than never...

For the first three weeks of their lives, we had no idea Max and Addison had a kidney condition. We did get a pretty early indicator that Max had more issues than Addison as he struggled to get off of CPAP, his breathing assistance, and he also had really tight muscles and would scream if you tried to hold him or move him. I remember in mid January they warned me that max may not make it home by his due date and that seemed devastating. I cried the whole way home from the hospital that day. I cannot imagine if someone had told me he would be 6 months AFTER his due date- goodness! But in the early days, with crazy post partum hormones, not being able to hold Max and thinking he would be home so much later than Addie was extremely difficult. Addie meanwhile was what they called a 'feeder and a grower' meaning that she just needed to master breast/bottle feeding and she'd go home. We had no indications at all that she had any issues. She seemed on course to be home by the end of January.

If anyone has ever had a baby in the NICU for any length of time, it is tough. You are hormonal and missing out on the parts of new parenthood you had always dreamed of. You are trying to figure out pumping and healing yourself (esp if you had a C section like I did) and so you feel awful. And then things are going on with these tiny babies that you don't understand. It is really scary. And emotional. You would think that those first few weeks before I knew Max and Addie were sick would be happier memories but I probably cried more those weeks than I have the rest of this year. I always felt such compassion for the moms of new preemies who were in Max and Addie's pod last year. Even when I knew it was just a little baby who would beat Max and Addie home and didn't have the issues we did, my heart still hurt for the new mama who would always look like such a wreck coming to see the little baby. The early days are just terrible no matter what lies ahead. But as I started healing and could move around better and I was getting to actually breastfeed Addie and not just pump and my hormones were starting to settle down, things started to get better. There was probably a week or two in January after the initial difficulty and before we knew that I started to get the hang of things and feel more positive and happy.

Because of Max's respiratory and muscle issues they started doing more tests the second week in January to try and figure out what was going on with him. I knew one of the tests they were doing was a kidney ultrasound but I didn't really know why. On Sunday January 17, the head neonatalogist called our house early in the morning and asked if my husband and I would both be available to speak with him that morning at the hospital. He told us both babies were stable but we needed to talk more about the results from Max's testing. We were incredibly nervous and I still remember every detail of the awful scene now. I was breastfeeding Addie at the time and we kept waiting on the dr and I didn't want Addie to wait so I was trying to be all easygoing and it's fine, I'll feed her and if he comes in, no big deal. So of course as soon as Addie starts eating, he totally comes in and the result is that I'm trapped in one of the worst conversations of my life wearing my red robe and attempting to nurse a preemie who is still getting the hang of it! I quickly realized that was not going to work and had to stop feeding Addie. The conversation was upsetting because we knew he was saying something was seriously wrong. It was also upsetting because we found out Addie had the same condition and that blew us away since she seemed so healthy. He told us they had 'congenital nephrotic syndrome' and were losing protein in their urine and how the lab results showed them this and that is was a genetic condition etc.

I remember crying and being upset. But we also really didn't understand that day. We certainly had absolutely no idea just how serious it has been. After all, losing protein in your urine really doesn't sound that bad. I do think he mentioned the word 'dialysis' as like a worst case scenario or something. But for that day it was upsetting just to know they were sick and that Addie probably wasn't going to be going home in the next week now as we thought. It was probably enough to know just that. I remember meeting my parents at Chuy's that day and us all being stunned but trying to be like 'it's probably not a big deal... i mean, how bad can it be to have a bit of protein in your urine'? (for the record, very very very bad it turns out)

Our stage of not really understanding what the diagnosis entailed was short lived. The next day after lunch Addie seemed unusually fussy. The nurse kept saying it could be gas but Addie was very upset and she was not a fussy baby- she still isn't a fussy baby, if she is crying a lot you can pretty much bet she is crazy seriously sick. Anyway, we didn't really know what to do and she seemed to have settled down some so we left for dinner that evening. We got a call as soon as we got home that Addie had gotten really sick and now had a fever and they were starting antibiotics. By the time we got back the hospital 30 minutes later, they had put her on a ventilator because she had gotten so sick she stopped breathing. We showed up and all the doctors were busy and none of the nurses felt they should be the ones to explain what was going on so we just sat there by Addie who was intubated in her diaper and lying on a warming tray and I just sobbed and sobbed and sobbed. I have learned to control my emotions and deal with some pretty awful stuff in the past year and I can get through tough days with a lot more grace now but I was new to this then and I was just hysterical at the sight of Addie looking so sick when she had just seemed so well.

The doctors finally arrived and explained that Addie had a Strep B infection and that because of her kidney condition, her body lost all of its antibodies (which are proteins) so she had a very weakened immune system and therefore got very sick very quickly. They told us they had decided we needed to go that night to the Children's hospital in the city as they felt we really needed a nephrologist (kidney dr) and an immunologist and more specialists helping Max and Addie than the Woodlands had to offer. I think the fact that they wanted them transferred that night was scary for us- we knew it was serious if it couldn't even wait a day. We were pretty overwhelmed and stunned. We suddenly felt how serious the situation was and it was just an awful night. Max and Addie were transported by ambulance around 4am to our city hospital. Al and I drove behind the ambulance in his car and it was a quiet and scary hour trip out to the hospital. We are so grateful for that move. Despite the distance from our house, it has been a great place for them to be and they got the help they needed here.

So we ambulanced there at 4am on Tuesday and then that day met the nephrologist on service (only 1 kidney attendings out of 4 will be covering the hospital on a given week. The others cover outpatient clinics or research). Dr W was on service and he had been communicating with the Woodlands hospital and had really established the diagnosis. He wanted to meet with us that day. So after having been awake for way too many hours and after a very traumatic series of events, we sat in a little meeting room with a whole bunch of people- some of whom I don't remember but I know included Kitty their nurse practioner (who we are still in touch with and came to Max and Addie's birthday party!) and Dr Chapman a neonatalogist who followed them the next few months. The meeting was horrible. How on earth I made it through without a huge breakdown I'll never know. Dr W is a wonderful doctor who sadly is no longer at our hospital but he is wise, trustworthy, honest and genuinely caring. He also has a way of telling you everything and telling you all the potential problems and kinda painting a fairly bleak view of things. He got the tough job of being the one to have to explain things to us initially and there was probably no good way of doing that. But we left the meeting feeling very stressed about nephrotic sydrome and clinging to a futile hope that maybe they were wrong and they didn't have that (we got genetic testing done in the next week that confirmed it).

On that first meeting in January, Dr W told us Max and Addison would have to have their kidneys removed and go on dialysis if they wanted to survive the condition. He told us that dialysis is hard on babies and the smaller they are when they go on it, the worst the odds of it being successful are. And he told us that although transplants will be a part of the plan for them, they are not a cure as they will only last 10 years before they need another transplant. He told us all about the risks of central lines and about the possibility that they would just stay sick with one infection after the other from not having any antibodies. In the end, most of what he told us, as much as we didn't want to hear it, was kinda spot on. We ended up coming up with a solution about the antibodies that made a huge difference and kept them infection free and the other doctors have indicated we may have more like 15-20 years from a parent donor kidney but... on the whole, he was painting a pretty true picture. It just wasn't one we were ready to see yet.

You always wonder what it must feel like to just have the floor fall out from under you. to be faced with that kind of news. I think you just automatically go into some degree of denial. We certainly did. We dealt with what we could and assumed he was crazy and all that bad stuff wouldn't happen to us. We didn't google it. (it took me months to be ready for that)- we didn't ask a lot of questions. We just survived. I mean, that's still how we handle things. Right now we're hoping for the best for Max and his neurological condition and trying not to be consumed by it. You can't sit and wallow or you simply can't make it through things like this. So you do a lot of choosing not to dwell on things and choosing to focus on what is good. And in January, Addie got better pretty quickly and was off the vent and back to eating and doing pretty well by the end of the week. So we were happy about that. We were adjusting to a new hospital, adjusting to a lot of new information and just trying to figure out what the next step was and not think too much about how much our lives had just changed.

It wasn't until the very end of January that we saw the first lingering 'symptom' of their nephrotic syndrome (Addie's rapid infection was clearly related of course). The very last day in January, Max and Addie started swelling. One of the proteins they lost in their pee, albumin, helps hold fluid in your blood and keeps it from seeping into your tissues. Because they were losing this protein, we saw Addie's little feet and legs get puffy and sadly for little Max, his whole body swelled up. January 31st was Al's birthday and his parents were arriving the next day and

I'll never forget Al crying and saying 'he looks like the michelin man' over and over. We started needing to given them twice daily IV albumin treatments which meant they needed central lines and from that point on, we were just chasing their body trying to replace the proteins we could as fast as they could pee out the replacement.

So that was last Janaury. I think it was probably the worst month because it wasn't mixed with as much good and joy as other months. As the babies have gotten healthier and bigger, the hard days are sprinkled among wonderful happy days soaking in their cuteness. We were also too overwhelmed to share what was going on as much so I think it was a lonelier time. We still often take a few days with new news to process together and share only with family or very closest of friends. But I'm learning that letting people know what is going on through Facebook and now this blog has been not only therapeutic for me but incredibly encouraging. I really appreciate the people who have taken the time to let me know they are reading. We feel very surrounded by love and support and it is such a blessing.

And for some photos from January...

Nana holding both babies on our last full day at the Woodlands hospital- one day after we got their diagnosis and only hours before Addie got really sick...

Max at one month old- he is actually on CPAP and we managed to sneak a photo of him while his mask was being cleaned!


Addie at one month old! Her skin looks so sad from IVs being put in :(


First ever family photo (at the Woodlands Hospital still)


Already a mama's girl.



Their first photo together and still one of my favorites.



Our family on their one month birthday

He was so tiny! It's hard to believe because he's such a big boy now!

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!

Addie update and Max's big tests

If you've been reading for a while, you have probably worked out that there are a lot of highs and lows in our journey and sometimes really good news that we celebrate ends up getting watered down in the weeks that follow. It makes me hesitant to share it when we do get good news but I usually do anyway because it is so exciting and such a blessing at the time! Anyway, our journey to transplant has been one of those times. On December 21, the day before the babies birthday, they started rushing all of my testing with this bold plan that transplant January 3rd. The surgeons had it on their schedule and they were like telling me what time to arrive on the 2nd! I didn't share that date with anyone aside from my best friends and family becasue I didn't really believe it. Dr S was out of town and I was pretty sure she thought it was too soon. And yet, it did stir up hope and excitement in me as I rushed through my testing and found I was all ready!

Last Wednesday, they officially cancelled the 3rd which again, came as no surprise to me but some disappointment. However, it was cancelled because Addie's doctors thought it was too soon following her previous surgeries and hospitalization and I totally respected that. Unfortunately, it seems to have now just gotten indefinitely delayed. They have decided to do some more testing on me to look at a couple of the tests that were ambiguous in their results which will take a while to get done and they want these results back and more clear before I donate. And there's now a conflict with anaesthesia and what 'protocol' the surgeon wants to use versus what they want to use on Addie with her being little. The long and short of it is that somehow we went from transplant Jan 3 to transplant not being on anyone's calendar.

We are discouraged as we are ready to move forward. We are also trusting both Dr S and God that Addie must just not be ready. We do not want to risk Addie losing my kidney early or any dangers to her so I know in our heads it is better to wait and do it right than rush to do it sooner. I say in my head because my heart still needs some working on. I have been very attached to the idea of transplant for Addie and I'm having to really work on letting that go for a while and being ok to be where we are. After all, she will transplant. There is no doubt about that. And although I know when I want it to happen, I certainly don't know when it is best to happen. So please keep praying for wisdom for the doctors and that it will happen at God's chosen perfect time for Addie. She is in the meantime doing ok on hemo. It has had some ups and downs as we were warned and there are days it's hard on her and days it's a lot better than being attached to a machine 17 hours like her brother. She's happy though and home and doing really well crawling now all over the floor and we are just going to have to focus on how happy and good she is now and stop looking with such anticipation to the next step.

So that's what is happening for Miss Addie. Meanwhile, Max is having a big week. Max has been delightfully easy for his Daddy and I during Addie's drama and been full of smiles and cuddles and is growing leaps and bounds. He's doing really well on his home machine. Yesterday he saw his pulmonogist who looks at his airway and she's going to be making some changes to his meds to reduce reflux and vomiting but generally seemed ok with how he's doing with his breathing. The big deal for Max comes on Friday. He needs to have two brain tests- an EEG which measures brain wave activity and an MRI which looks more at brain structure. Unfortunately it is crucial for the MRI that he not move so they are going to put him under general anaethesia for it. Although we've done the anaethesia thing enough now that it's lost a lot of its scariness, it's still a big deal every time and Max hasn't been under since June so it's a big deal to have to go through that again. So please keep sweet Max in your prayers on Friday for a smooth anaethesia experience.

And then please be praying for the results. He has had two EEGs and MRIs in February and in early March when he was about 2 months old due to some muscle stiffness and breathing abnormalities. The later set were said to be normal and neurology stopped following him. He certainly didn't have any brain bleeds or significant problems on them. Dr S suggested we take him back to neurology a few months ago as his motor concerns have become more obvious.

Because the babies lived in the hospital and have serious medical issues we expect them to have some developmental delays. And while Max is improving and getting stronger, he is not able to hold his head up or grab onto objects and at one year old, this is troubling and makes it more likely that there is some sort of other medical concern there and that is is not just a 'hospital delay'. His primary issue seems to be with his neck and his arms. He moves his legs enthusiastically and his core is actually strong enough that if he could hold his head straight, then he'd be able to sit up. But his head is still floppy and he his ability to use his arms to grab for things is limited.

We love Max so much and think he's the best baby and he has the most perfect disposition but his lack of motor skills are sad for Max as it means he isn't able to play with toys the way his sister is. Watching the difference between Addie and Max is difficult for me as I rejoice as she develops new skills and is growing into this little toddler and at same time am heavy hearted for Max and these milestones that he is not reaching. The widening gap between them also seems to suggest there is more to Max's delays than hospitilization or dialysis. And so we need to start looking again at his brain and seeing if we can't find an explanation for what is going on. When he met with the neurologist last month, the neurologist reviewed his previous MRI and felt that while there were no big obvious problems, there were many subtle abnormalities on the MRI. And so he wants another one now that he's bigger and he wants a completely sedated one so movement can't invalidate any results.

I'm praying that the MRI clearly shows us what is going on in Max's brain. If there are no neurological problems then I will rejoice in a completely normal MRI and we will keep working with physical therapy and get his muscles stronger with use. However, if there is a neurological basis to Max's motor problems, I do pray we get some answers. We do know that when it comes to the brain, answers are never concrete. A doctor will not be able to tell us when Max will be able to hold his head up or when he'll be able to walk or if we'll see any of these problems manifest themselves into adulthood. He may be able to give us some predictions and some ideas but with a lot of neurological problems, the progneses are widely varying and the ability to know what lies ahead is impossible. But a diagnosis and some direction is nonetheless, an important step forward. It will also be important for us that we accept what we find out and find peace, hope and understanding in what we learn. We really appreciate your prayers.