To tell or not to tell...

I'm considering what to tell the other parents from Charlotte's nursery class about her vision.

I can see pros and cons to both sides.  One parent sent a note to all the class parents explaining her son's vision and was so pleased she did.

At this point, I am leaning towards informal disclosure, and not to its fullest extent: "She wears the glasses because they help her see better."  "She has quite poor/very bad vision."

Because it is nursery, the time will go by very quickly and more than half the children will leave by the time they start school.  By the time they move into the proper school, she will have been established for a long time and I feel there will be no need for a big announcement.

 

My main motivation for not telling is that I don't want other parents to worry that they could not take proper care of her.  Not so much this year, but soon they will go for drop-off birthday parties, playdates and sleepovers and I would not want Charlotte to be excluded from these.  It seems that the less fuss I make about it, the less concerned other parents would be about it.

Charlotte's life will be full of decisions about how much to disclose and when so this is just one of the many steps in that road.

Networking

Do you ever feel tempted to stop someone in the street just because they have a white cane or a guide dog? I do. I realise how inappropriate this is but I am still tempted to introduce myself to this one particular man whom I see at least once a week. He has a daughter at a local school and I see him frequently on the school run. But what to say? "Hi! You're severly sight impaired! So is my daughter! I don't know any real-life blind adults. Can we get together for coffee so that I can ask you lots of personal questions about your life?". Yeah, right.

Do blind people acknowledge each other when they meet, compare conditions and commiserate? Someone did tell me that he can always spot a visually impaired person even though he is blind. But I guess I should just mind my own business (this is London, after all) and wait for a time when our paths might actually cross or when Charlotte is not in her pram and he might notice her and introduce himself. That would be nice. In the meantime, it is nice to witness an essentially normal Dad, walking his kid to school, taking her and her friend home again, going to the gym, talking to people in the street, talking on the phone and looking for all the world like any other person in the neighbourhood. (I did say I see him a lot - I swear I am not a stalker!)

Survivor's Guilt

I was with my sister this week and we were talking about parenting Charlotte. She said to me that sometimes she feels bad that she has four healthy children (and I don't). Just acknowledging the thought was enough to make my negative thoughts (and I have had some in the past) evaporate. It's amazing how powerful words can be.

I replied that I don't begrudge other parents their healthy children, and I realised I really don't. No family is perfect, no child is perfect, and we are all just muddling through as best we can. We love Charlotte and love having her in our lives. The only reason we would wish things were any other way would be for her sake, not ours.

The sweetest moments

...are the ones that I never write down, and I really must, because they are so wonderful, and so easily forgotten.

This morning, Charlotte and I had a lovely cuddle in bed. She laid her head on my chest, she was perfectly still: no squirming, fidgeting or tensing. I stroked her hair and she lay across me, completely relaxed and calm. It was such a lovely start to the day, I wish all our days began in such a sweet and beautiful way.

Twighlight babies

We're now officially raising a family of twighlight babies. The great news is that the little cousin is not having plastic surgery or anything on his face. He is expected to make a good recovery if, if he is kept out of the sun at all times for the next couple of years. That makes Charlotte the perfect playmate for him!

We're so relieved that the prognosis looks good for him. Obviously, they are not out of the woods yet and the conditions are onerous but, compared to the alternatives, it is a really good outcome. Now comes the hard work for them all.

Luckily we all live in climates that have long hours of darkness in the winter, long twighlights and frequent cloudy and rainy days. Wonderful conditions for us sun-avoiders!

In the blink of an eye

I've been pretty quiet recently. We have been feeling very normal and just getting on with life. Then, even more recently, I have been too upset to post: Emily and Charlotte's baby cousin has been in hospital with severe burns. To his face.

I can barely bear to write about it and yet, I can't bear not to. I want to tell you to hug your kids tight and stroke their perfect, tender skin. Kiss them all over their sweet faces (until they push you away!). Smell their hair, savour them in all their perfection.

And baby-proof your house! I am aware of how slack we have been in this area. We have uncovered nappy buckets standing in the bathtub, hot water that comes on way too hot, an oven that is an endless attraction and many, many unsafe toys that belong to the older one that were not in existence when we only had one child. We've not moved house or anything but for some reason our house is not at all well baby proofed.

Poor little cousin, he is only 10 months old and he pulled a cup of freshly-poured tea down on to himself. He has been in intensive care and is still in hospital. They are talking plastic surgery. We just hope and pray that he is going to be fine, that he will make a full recovery, that this will not scar him physically or emotionally, for life. We don't really know, no-one can tell how he is going to heal. We haven't seen him, they live a long way away from us, the other side of the country.

I feel so, so afraid. Afraid that something else terrible is going to befall our family. I lie awake at night, worrying about Emily. She is the only grandchild that Mr's mother has who is not disabled or disfigured - what's going to happen to her?

A year ago today...

...I was a superhero for giving birth in 3 hours

...we had two perfect little girls

...we were so happy

Luckily, we are still so happy, we still have two perfect little girls and I still rock for birthing two children!

But I'm also so sad, so very very sad. Life has shifted on it's axis, ever so slightly, but a significant shift nevertheless. I wish I was back there a year ago and I wish I could just erase that one little genetic spelling mistake...


----------------------------------------


Well, that's enough of that.

Happy Birthday Charlotte!

We had a really nice day today, Charlotte got presents in the morning and she loves her new shape sorter. I made chocolate cake, with white chocolate icing, in the shape of a 1! The photos look great (mainly because I am wearing makeup!), I spent most of the morning on the phone to my lovely family and a friend from Kenya was on a 24 hour stopover in London and dropped by for cake! What a great day!

I recently re-read my birth story about Charlotte's birth. I originally posted it on a listserv that I frequented regularly in my early parenting days. Since this blog is my repository of all things Charlotte, I think this is the perfect time to re-post it here:

On the night of my due date, I couldn’t get to sleep. I tossed and turned for ages after I went to bed. I woke up at 1.30am with a wet feeling in my pants and rushed for the bathroom. The fluid was a steady stream and I was trapped hovering over the toilet. Every time I moved, there would be another stream, there was no way I could get back to the bedroom to get a sanitary pad without getting it all over the carpet. I hung around in the bathroom for long enough that I eventually woke M up (ok, I knocked over a few things and generally made quite a bit of noise until he had no choice but to get up). Got myself a pad and fresh pants and hoped to get back to sleep. Pretty soon I had some mild crampy-ness in my lower abdomen. It was about 2.45am when this started and based on my previous labour and delivery, I was expecting that this would go on until at least the morning. I was hoping I might have a snooze in the meantime because I was a bit bummed that I had only slept for about 2 hours so far.
After about 3 mild contractions, they were getting stronger and my breathing (complaining) alerted M that something was up. He couldn’t sleep anyway and we chatted for a bit. He noticed that each contraction was a minute closer than the previous one had been so he decided to get up and do all the last minute things that he should have done the week before. He re-hung the bathroom towel rail, took some baby stuff to the cellar for storage, made himself some cereal and a coffee and took a shower. I told M I wanted to make his coffee (that’s my job in our weekend breakfast rituals) but he wouldn’t let me. He knew I just wanted to tell people that I made my husband a coffee when I was in labour! Meanwhile, I was wandering around, having more and more contractions in the bedroom, in the kitchen, on the toilet. I puked a couple of times and had a couple of really bad ones from time to time.
When the contrax were quite bad, I tried really, really hard to visualise them in a positive light: opening my cervix, bringing the baby down the birth canal. I was extremely fearful of the pain and I tensed up and closed up to try to prevent it. I also remember this vividly from my first labour. When I was visualising, it really did help to make the pain lessen. Either that or those contractions weren’t so bad. I told M he had to tell me to think “open thoughts” when he was holding me through them. He didn’t really get it and I think he felt a bit silly, but it helped me a lot so I told him so and then he was much better about doing it. So “open thoughts” was my mantra for each contraction. But sometimes I just begged “Please open!”
M wanted to text his sister to have her on standby to come over to look after Emily. I didn’t really see the point in doing that at 4am when we thought the earliest we might want her would be when Emily woke at around 6.30am. I didn’t want to be in labour with her around, wandering in and out of the toilet and moaning. At about 4.45am the contrax were really starting to get on top of me and I was thinking about getting to the hospital for whatever pain relief they might offer. My biggest regret with my labour with Emily was not going to the hospital sooner and labouring for so long at home in such pain. I asked M to get my notes out of the hospital bag to get the phone number for the labour ward and ask them if I could come in. He went off to phone and I heard him saying “my wife is in labour, she’s just puked, can she eat anything?” I’m thinking, “What the hell is he talking about???” “Tell them I want to come in for gas and air!” I yelled at him from the bedroom. By now I was sweating with each contraction and was kneeling beside the bed with my face buried in the towel I had fished out of the dirty laundry hamper when my waters broke (it happened to be a kids hand towel with pictures of ducks on it).
Thankfully, the labour ward weren’t too busy and they said I could come in. My contractions were coming closer together all the time. They had gone from 10 minutes to 3 minutes in the space of about 5 contrax. M phoned a taxi for his sister, she arrived, the taxi was waiting outside for us, we ran outside, I had a couple of contrax in the street. I asked M to double check that he had re-packed my notes, he hadn’t so he ran inside to get them while I stood in the street having contractions. Eventually, I could crawl into the back seat and kneel there. I had contractions all the way in the back of the taxi (still clutching the duck towel). We arrived at the A&E entrance of the hospital and were offered a porter with a wheelchair to take us to the labour ward. This guy pulled a wheelchair out of a cupboard and said, “there you go.” No way could I sit down, so I knelt on the seat and M pushed me backwards down the endless corridors to the lift. Thankfully it was completely deserted at about 5.30am and my horror at the porter not taking us was lessened by the fact that he would never have let me sit so unsafely on the chair. There was someone else on the lift with us but I was way past caring whom I moaned and screamed in front of. We got to the 5th floor and waited an eternity to be buzzed into the ward.
There was another couple in triage area of the labour ward but she was just lying on the bed with a fetal monitor strapped to her belly. No way was she in labour. (That was me 2.5 years ago, thinking I was in labour - sorry luv, you ain't seen nothin' yet!) The midwife was ready to check me for dilation and I was hoping desperately to be at least a couple of centimetres. I was a model patient: I refused to lie down on the bed, I wouldn’t wear a monitor, I wouldn’t open my knees, I was still clutching the duck towel like it was my childhood security blanket. Luckily she was a very bossy Caribbean woman who was clearly used to dealing with unco-operative mothers-to-be. When she checked me I was... 7 CENTIMETRES!! Woo hoo! I had only been having contractions for 3 hours! My first labour took about 24 hours to get that far.
I got off the bed saying “I want gas and air, I want an epidural, I want everything”. The midwife chuckled and told me to walk to the delivery room then I would arrive ready to start pushing. I got to the delivery room and got started on the gas and air. The midwife went to find the delivery suite midwife. Before she left, I told her I wanted to push and she told me I wasn’t allowed to.
Gas and air is a wonderful thing to me. It completely takes the edge off the contractions and makes them bearable. I had 3 massive contractions and the urge to push was overwhelming, I kept saying to M, “I’m not allowed to push, I’m not allowed to push.” They were getting to the point where they were getting on top of me again and I would be asking for the epidural asap. The midwife came back(same one) and said she would check me again. She didn’t even examine me properly, she just took a glance and said flippantly, “OK, you can push if you want. Your baby has blonde hair.”
I was so excited that I was fully dilated. Clearly, those last contractions were the baby coming down the birth canal of its own accord. Then the midwife told me I had to put down the gas and air. I was so devastated by that. I told her I wouldn’t. She said, do you want the pain to be over? I told her I would keep the pain and keep the gas and air. She said it would be too distracting for me and I told her I was good at multi-tasking. She was so good with me: patient and bossy!
The pushing was really hard, it really hurt and I felt quite discouraged. In reality, it was very short (11 minutes, according to my notes), but it was a lot longer than Emily’s ventouse delivery had been. I was feeling burning for what felt like ages. At one point she went to get the mirror and I couldn’t bear to look as I couldn’t handle the thought that the head was not half out and the pain was already so bad. Eventually the head came out, the shoulders were painful too and then it really was over.
The midwife dumped her on my belly and we all said hello to each other. M called the time (06.51) and cut the cord. Then the midwife lifted my shirt and put her on my breasts, she started rooting around, found the nipple and started sucking.
I was elated at how fast it had all gone, I had suppressed my fears of another awful birth experience and expected that I would just get through somehow. I don’t feel like it was a wonderful experience and would never advocate that every woman should do it, I just feel like I got off lightly and am wholeheartedly relieved. I’m so instantly in love with her, even though I barely know her. I don’t know if it’s a better birth or the confidence of knowing what I’m doing the second time around but it is all so much easier and more enjoyable this time.

IVF?

One of the Achroma-Mummies that I know through Facebook mentioned today that they are considering IVF for the conception of a second baby. The embryos would be tested for the Achromatopsia gene before implantation.

M and I have talked about this before and I have always been adamant that I would not go through the rigours of IVF to avoid the 1 in 4 chance of having another Achromat. Am I in denial about the seriousness of living with this disease? If I was really baby-crazy, I wouldn't hesitate to try for another one. The odds aren't that bad and the condition isn't that bad. Plus, the family are already set up to deal with it: your house is already darkened, the sunglasses already researched, and they would grow up with a built-in playmate/buddy/understanding person around. As for medical treatment: in the UK, it is paid for by the NHS.

But am I looking at from the luxurious perspective of already having two children and not being broody?

Two philosophical questions:

1. Is it irresponsible to knowingly concieve a child who may require more medical resources than another child, knowing that these resources are going to be paid for by the taxpayer?

2. Is it bad of me to be more willing to submit our offspring to a possible life with Achromatopsia than to go through IVF and genetic testing of embryos? Am I trading my own convenience and expense for their future happiness?

I would be really weary of creating a designer baby, one of the biggest reasons is that nobody is perfect and trying to create the perfect child is sure to end in dissapointment.

At the heart of it, I feel like it is kind of disloyal to Charlotte and her peers, kind of like saying to them, "What you have is so terrible that I am going to go through all this time, pain, heartache and expense to avoid it ever happening again."

Miscellaneous ramblings

I've got lots to write about today, sometimes I think I don't have anything to say but if I really think about it, I can usually come up with something. Today, I have lots of somethings.

Firstly: Charlotte and her injuries. It's still not normal and not right. I took her to the doctor yesterday. He was nice about it but didn't really feel that it was so serious that it merited further investigation. He recommended damage limitation and wait and see. That's ok with me for now. While it is concerning that she would rather do the action than avoid injuring herself, it could be a bad habit, it could be a way of stimulating her senses, it could be soothing and hopefully, it will just go away on it's own. At least I have raised it with someone and I don't feel like I should be doing any more right now. The Dr pointed out that if anyone is going to work with children with negative behaviours, it would be when they are older anyway. I am still going to mention it to every professional that we go to see and I am going to call her VI teacher about it again when the summer holidays are over. Also, it is good that I know about these sorts of injuries before the new nanny starts, it would be very disturbing to have random bruises and scratches appearing on my baby with a new caregiver in the picture. I'll have to talk to her about them when she starts (one more week - can't wait!)

I finally got up the courage to start going through Charlotte's baby photos in preparation for producing a baby album for her. I haven't been able to look at photos from her first three months. All I think about is how we were so happy and we had everything we ever wanted. Well, no one ever has everything they ever wanted and we are still happy now. One of the things that Martin articulated when all this first happened was that he lost the feeling that he had always had that life would only get better. I think we are back in a place where we do expect that life will continue to get better. We really do have it very good. Still, the photo viewing did make me sad. But I am looking forward to producing a nice album for her. Since no one has given me a nice album, I think I am going to get a photobook online. Filling it with pictures of a second baby is always a challenge - there are almost none of them alone!

I finally took delivery of another Achromatopsia-related book today. It is No End in Sight, My Life as a Blind Iditarod Racer by Rachael Scdoris and Rick Steber. Rachael has Achromatopsia and I'm looking forward to reading it. In fact, I have read about two chapters already, as I finished undoing the packaging - even though I was supposed to be making dinner. I'm going to sit back down to it as soon as I finish this blog post. I think it will be a pretty fast read and I'll post a review when I am finished.

A good article about Blind Football was published by the BBC today: http://www.bbc.co.uk/news/magazine-10914782 I don't know if I am more attuned to it now, but I do see mention of Blind Sport from time to time in the mainstream media. I guess it is one of the more intriguing things about blindness - most people know about Braille and guide dogs. I think it is good exposure and I really hope that we are going to be able to hook Charlotte up with sports associations in the future to help her build confidence and physical skills. Of course, if she wants to get out there with the fully sighted, that's fine too! I think I will be paying closer attention to the Paralympics, looking for blind athletes to point out to her.

The Yahoo Group has posted some early ideas about an Achromatopsia Conference that they would like to plan for next year. There have been a few in past years. It sounds like a good idea and I have been wondering if I can lend my event-planning skills in any way. Mainly, I am wondering if I can bring any money to it by finding willing sponsors or exhibitors for the event. I'm not sure, there are two companies I can think of who would be flogging their products and services to Achromats and they know they are already well known by the community so I don't know how much they would pay to get in front of them. Maybe to preserve exclusivity?
Sponsor types:
-Ophthalmologists
-Low Vision services
-Sunglasses
-Genetic testing services
Something to think about anyway. I wonder how many people they are expecting? I don't see us going but I'll follow along with their progress.

When in doubt, be normal

That is a good motto for us, one to remember at all times. The best thing we can give Charlotte is a normal, happy childhood. When I am looking for nannies, I wondered if I should disclose Charlotte's "extra needs" in the advertisement, but I didn't, we aren't looking for a nanny of special needs children, we are looking for a normal nanny for normal children, one who is particularly caring and attentive. I met somebody lovely last night and I am definately inviting her back for a second interview. I have three more to see and I will hopefully be able to invite two of them back.

I have also heard from Moorfields about sunglasses, they have the recommended tint from the Opth team (20% light - which I don't think will be dark enough) and I have to go and choose frames. I'm going to go on Tuesday next week. We are all so sick this week that my 10 visit Bikram Yoga card is going to expire.

Tomorrow...

...tomorrow ... is the big day to meet Professor Cone. I have my list of questions ready and I'm prepared to beg for genetic testing.

There have been some results published about a study on dogs that cured achromatopsia with gene therapy. That's pretty exciting. The tough thing about having Charlotte participate in a study (not that we've been asked) is that her condition isn't life-threatening and gene therapy is at the forefront of new (risky?) medicine. If a family had nothing to lose by persuing new treatments (ie. Your child is going to die or be severely disabled regardless) it would be an easier choice, but how can we choose something for Charlotte with an uncertain outcome when the alternative is still a full and happy life?

Nervous jitters

I'm getting ready for our appointment with Professor Cone on Friday afternoon. I hate this. I lie in bed at night, trying to prepare for the worst, but hoping for the best. I feel convinced that this is just part of the cascade of bad news that we have been experiencing ever since Charlotte's eyes first started to wobble.

Of course, we are not really going to have any new information on Friday, this is just to get the ball rolling. Every night I cuddle Charlotte and whisper to her, "Please don't have Cone-Rod, please don't have cone-rod, please don't have cone-rod" but I don't think it makes a difference.

Light or dark?

Depending on what I have just read, Charlotte either has Achromatopsia or Cone-Rod Dystrophy. If she has one, I don't want to over-darken her environment and if she has the other, exposure to bright light could hasten the degeneration of the retinal. Damned if you do, damned if you don't. Welcome back to Motherly Guilt.

She had a good weekend though, the weather was overcast and we practised going without sunglasses most of the time. She was so lovely that I started wanting another baby!

Acromatopsia anyone?

I've been doing more of my amatuer internet research and come across a new term: Achromatopsia.

I think this is what Charlotte's Ophthalmologist thinks she has. She (the Opth) can't confirm this without either genetic testing or further ERG tests over a period of 2 to 3 years because she (Charlotte) could have Cone-Rod Dystrophy. I have to check with Professor Cone if these are the only two conditions that it is possible for her to have.

I'm crossing my fingers for Achrompatopisa. I've found a bit of information, not much, but what I have is very useful: personal anectodes of preferred lighting situations, visual aids and optimal room environments. It is all very helpful no matter which condition she will turn out to have.

Charlotte's VI teacher is coming again today. I was really encouraged by his last visit and his assessment of how good her vision really is. Hopefully it is the same today!

I'm also tossing up about the benefits of us going to a family day out in August. It is run by the National Blind Children's Society at an Adventure Playground for special needs children. I am of two minds about going. She seems a bit young for this sort of thing at the moment, on the other hand, it will be valuable for her to develop a peer group of her own and socialise with low vision kids. She will certainly get something out of a day out, she will be 11 months old at the time. But I am really nervous about being confronted with children and families who are dealing with severe disabilities. I am worried about witnessing disfiguring conditions and also about feeling sad about the struggles that low vision children face. I'm not sure I am ready to confront these things yet. Or ever. I am going to see what Martin thinks. It is on a weekday and he would have to take the day off work. I'm not going to go on my own, logistically and emotionally it is not something I am able to go to without him.

Who likes to look into the sun?

Answer: Charlotte.

This kid is such a mystery to me! We went out today and she was in the baby carrier. I had a sunhat and sunglasses for her instead of the usual buggy sunshade. She stuck her face straight up into the sky and peered at the sun from under the brim of her hat. I took her glasses off when she was asleep and when she woke, she wanted to stare at the sun again. I guess she was wondering what that big, pretty light, a long way away, was. So strange that she wasn't photophobic about it. It makes me wonder what sort of diagnosis we are heading towards.

Using my rods

I had a really interesting rod-related experience last night: I went into our darkened bedroom and was looking for something on the floor. I couldn't turn on a light because Charlotte was sleeping in there and there were lots of things lying around on the floor.

I saw three unfamiliar dark objects lying there and I was trying to work out what they were. I realised two were Emily's navy slippers and one was my navy eye mask. But when I looked directly at each object, it seemed to dissapear. I could see the outline but no detail. When I looked at a different object, the detail came back in my peripheral vision. The slippers have white pictures outlined on them so they were particularly obvious in losing their detail.

It was the first time that I have seen my own blind spot in rod vision. I spent quite a long time flicking my eyes between each of the three objects and noticing how the details dissapeared from my central vision and appeared only in my peripheral vision. It was frustating to have to try and see the object without looking at it. I wondered if that was because my brain is trained to look direct and Charlotte's eyes will train differently so that she is using her peripheral vision to look at details.

The light was also very dim which made it really difficult to see. I wonder if Charlotte will be able to use her rods more effectively in brighter lighting. Mine could only operate that fully when the lights were so low because otherwise my cones would have started working.

The whole exercise was very illuminating (pun intended), but also quite upsetting.

Too much of a good thing

My parents have been here visiting and while it is great to have them around, their visits are always a bit of a mixed bag. I guess it is the same for most people with their parental visits. It is particularly difficult with Dad because his lifestyle is so different than ours. I realised that he has probably never experienced life with small children so close for such a long period of time. Even with his own children, he would have been working much of the time and only with us on weekends and holidays which are different.

I've been trying to do some fun things with them but I also feel like they are around to help me get our lives on track and feel under control. Having them around is great but it does add another layer of chaos and work to the day. I'm going to get under control by stopping making dinner every night. It is kind of like hosting a dinner party every night, without getting out the good china. They say they want to shop and cook so great, I'll let them and it is a load off my mind. I enjoy cooking but it is one more thing to get done each day. And get done early if I am using the crock pot, which I often am.

Overcoming shyness

I'm feeling a bit shy these days but I have been reaching out to some people in the blind community. I have certainly benefitted greatly from doing so as they are wonderful, positive, warm people; grappling with their own demons. Finding such great role models for Charlotte is so important, to me right now, and to her later.

My own baby

Charlotte's good developmental assessments have left me a bit shamefaced. I realise I have been listening to the internets too much, rather than looking at my own child. I have been reading far too much about various conditions (of which we still don’t know which one applies to Charlotte) and getting myself incredibly upset. Meanwhile, my lovely baby has just been getting on with the process of growing and developing and looking around. She’s saying to me, “Mum, I’m fine, look what I can do!”

This is so important because I really need to treat her like the individual she is. True of all children, particularly special needs. She will show me what she needs. I have been distracting myself by running around and getting appointments with anyone I can. It just feels more productive than doing nothing at all.

When fussy isn't about the eyes

Today was a fussy, fussy day. I don't know if she is teething or if she is feeling sick but it was fuss, fuss, fuss all day. Unless she was being carried around. I was going crazy but I had a lot of help and company today so it wasn't too bad.

I realised at the end of the day that I finally didn't immediately jump to thinking it was because of her vision that she was fussing. Usually, I think it is because it is too bright/she can't see/she has a headache. Today, I think she is probably teething.

My parents are arriving tonight, their plane has landed and I am awaiting their arrival right now. I am a bit nervous about their visit because I think we often have different expectations about what their visit should entail. We'll have to see. Emily is excited and it is great because we saw them so recently that she remembers almost everything about them.