More medical stuff for Gavin

Hey everyone,

interesting that the first two sentences from the last post say it's been a hard few months but that I was getting better. Well, I was. Really was. Back at work and looking at starting in a new area at work with more hours. Then came Sunday night a couple of weeks ago. I thought I had a migraine headache, not that an uncommon occurrence for me. The next thing I remember was my meds not working and me vomiting- a lot. Not a common ocurence. Then it was Wednesday morning and I woke up in the ICU with four point restraints on. Over the next couple of days I learned what had gone on. Geneveieve had gotten my dad to take to to the hospital around 2 AM- by the morning I had begun to act violent and out of character. I needed to be restrained by security at times and eventually tied down to prevent me pulling out my IV's and other tubes. I then lasped into unconsciousness till Wednesday, basically. Although the tests haven't been straightforward, it appears that I developed non infectious menengitis, possibly as a very late effect of my surgery in March for the spinal tumour. They thought brain hemmorage for awhile too, but that isn't the prevaling thought now. I am doing much better now. They have discovered an abcess of sorts near the surgery site which may be a pocket of infection that casused this. I'm waiting to get it aspirated by a needle under radiology to see if it is infectious still. I am on eleven doses of three different intraveneous anibiotics (amplicillin, vancomycin and ceftryaxon)for another five or six days now. I have a PICC (Perifirally Inserted Central Line Cathater) line in to get these meds.

So once again, Genevieve has benn unspeakably strong and wonderful. She has been looking after the girls who have benn scared and missing their dad while at the same time looking after me. During my incapactitation she had to answer questions on organ donation and advanced directives for me- fortunately if never got that far but the possiblility of me becoming that ill was a very real fact. I'm still working out what happened- I sort of feel I lost several days during whcich I almost died- I went from knowing I was sick with a headache to completely losing control of my behaviour and the awareness of what was going on. I'm feeling much better now and hope to get home soon- we'll see what we do from there after I get this test done tomorrow hopefully. I simply cannot imagine doing anything in my life without my incredably strong and amazing wife. The way she handles adversity of all types is amazing. With the excecption of watching my wonderful daughter Ailsa grow this has been a dreadful year for us. Zoe has had a lot of medical issues and pain issues that we have struggled to get a handle on. I had first the spinal tumour and now this development out of nowhere. All this looking after other people have contributed to Genevieve's own medical situation to the point she has now had to take a stress leave from work to deal with the mental and physical pressures of simple living our day to day life. Nothing I can say would sum up how strong she is and and how much I need her in this life. She is the strongest mother and wife I can imagone. Our life has been so unbelievavbly hard this past year (or two)and I know I never would have got through it without her. All I can say is thanks my love. Let's hope 2013 will get a little easier for us- other wise it will kill us all for sure : )

Zoe's great grandfather

This is a kind of sad post. Zoe's great grandfather (Gavin's grandfather) died this last week at the age of 98. We were lucky enough to be able to visit him in Scotland when Zoe was about six months old, and we got a lot of footage of Zoe with her great grandfather. His funeral was today, and as a sort of memorial to him I put together this video.

My grandfather was quite a character. He had a fondness for poetry- the good, the traditional and the very bad. There are examples of all three in this video. The first is a poem, as my granddad says, about Scottish emigrants- I don't know the title and, in truth, only understand about half the words. The second poem about a three legged dog and is by William McGonagal, widely recognized as Scotland's worst poet. The third one is a rather bawdy poem about a lady named Teresa my Granddads girlfriend Win declares is "not for young ears". The final poem is "The Shooting of Dan Mcgrew" by Robert Service- it was one of my Granddad's favorites. The music at the end is Amazing Grace- I'm sure you will recognize it. It was my grandfathers request that it be sung at his funeral, so it seemed the obvious choice for this video. This version is by a mixed Canadian Military and a U.S. Marine Corps band.

The lady in some of the pictures is my granddad's girlfriend Win Moore, who for many years has been my grandfather's friend and companion and a second grandmother to me (and a second great grandmother to Zoe). She is a wonderful person, and I thank her for bringing so much joy to my granddad's life.

Zoe's middle name is Alexander, named in part after my grandfather, and I can only wish she has as long and full a life as he did.


He will be missed.

"Daddy's a girl"

I recently shaved my beard for the first time in five years (I think I'll grow it back) and Zoe's reaction was quite funny. Zoe really touching loves faces and particularily men with short beards (like mine). She loves them so much that all her male preschool teachers have stopped shaving on days when she is going to be in, making for a very scruffy daycare staff. Anyway, the first time Zoe saw me after I shaved my beard she felt my face and then signed "Daddy" and "girl" over and over again while laughing her head off. So I guess it's very funny that Daddy is a girl!

More sign language news- Zoe has come up with a sign for Alison, one of her main teachers at preschool. She signs "girl" and then smiles- she will frequently talk about her at night after school or when we tell her she is going to school the next day. Alison is thrilled- though Anthony (her other main teacher) is a bit jealous and is working very hard with Zoe to say "boy" for Anthony. We tell him to be patient- the male signs on the top half of the face are harder for Zoe to say then the female signs on the bottom half of the face. Even though this is true I'm not sure it makes him feel better. Oh well, he's at least got the scruffy beard going for him!

The world we live in (sucks sometimes)

First off, Zoe is absolutely fine. Great actually. She just started three day a week preschool which she loves and is one busy little girl. I am going down early to pick her up and bring home Brittany, one of the school's goldfish (and her tank) that they no longer have room for. Zoe loves fish and wanted to adopt her (or at least she seems excited) so welcome to the family Brittany. We are all recovering relatively quickly from the cold we all had last week and Genevieve seems to be feeling a bit better after having a rough couple of weeks (knock on wood for those last two). So all is well.

This post is a copy of a letter I sent the CBC last Thursday. The CBC is Canada's national publically funded broadcaster and the show I refer to is a satirical news program (long past it's prime). It's not really a happy letter- not really a sad letter either. More resigned, I guess, and a reflection of the world we live in, and the perception society has of those that we all know deserve far better. It contains some terms I would never even think of using- not meant to offend but to illustrate my point. Here's the letter, anyway.
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Hey "This Hour has 22 minutes" people,

I am not a fan of your show, though once I was. It has probably jumped the shark tank some time ago, despite the introduction of some peppy new comedic talents. Still, you are not as terrible as "The Air Farce"; you are certainly no Rick Mercer Report, however. Sorry, but there it is. I do thank you for bringing a nice little piece of irreverence and satire to the Canadian/world scene, no matter how frequently miss your mark.

This letter is not intended as a critique of your comedy, however. Today I sat down to dine on some nice leftovers and switched on your show at 3:53 PM. As I enjoyed my re heated meatballs a segment came on- the show was a rerun and I have no idea what the segment was on or when it was from. Something about IQ scores at the CBC. Whatever. However, in the course of the 92 seconds I watched you used the term "borderline retarded" at which point I clicked away. We don't have cable, so five channels later I found myself back again to hear "it's like getting a gold medal high jump at the Special Olympics" at which point I turned off the TV, sighed (I had finished my microwaved meatballs by this point) and came through to write this letter. And here is why.

The term "borderline retarded" is, except in very specific medical senses (and even then it is insensitive and non specific) an unacceptable phrase. As are Special Olympic jokes, when the aim is to denigrate the accomplishments of somebody. People with developmental disabilities (like my daughter Zoe) have to put up with these insults, and this discrimination, and this denigration of their worth as human beings every single day. Casual references and jokes, like yours, really do stigmatize and hurt. My daughter, only two and half, does not yet feel this hurt , but I do, and her older friends with developmental or intellectual disabilities do, and my cousin who has Downs syndrome does, and thousands and thousands of other Canadians and people around the world every single day do. Imagine for a moment you are an adult with a developmental disability, and you come home from your job or your day program or whatever and you’re sitting on the couch with your mom or your roommates and you flip on "This Hour has 22 Minutes". You think, "oh good, they are funny" and then BAM! Mark is calling you and your friends retarded. And then BAM! you look up to see your Special Olympics medal you are so proud of just as Gavin is taking a big fat dump on it on national TV and calling it worthless. Nice guys. Really classy. And people laugh. And laugh. And laugh.

And you shut off the TV and then what do you think?

And by the way, have you ever seen some of those Special Olympics athletes? They can kick my ass at High Jump or Shot Put, or just about anything athletic. Yours too, I'd be willing to bet.

So will I boycott your show? No, I don't really watch it anyway. Will I organize a letter writing campaign? No, though I will encourage my friends and family who I included on this e-mail to write to say "Yo, guys. Way to go. Thanks for picking on the weakest and most discriminated against group in our society, and contributing to their continued degradation by doing it so during prime TV watching hours, and showing it continually on re-runs, so people can see it again and again and again". I am far too busy for letter writing campaigns- organizing my daughters medical appointments, looking for ways to maximize her quality of life, doing her physiotherapy, taking her and her walker and her stander and her special needs stroller everywhere, fighting discrimination and fostering inclusion so maybe, maybe one day she won't have to put up with this shit . . . you get the idea.

If there is an air of weariness to this letter, it is because I have to fight this fight, for my daughter, every single day- I hear it on the subway, on TV, at work (and I work at Sick Kids, the largest Children's hospital in the nation). And do I ever expect to see "retard" go the same way as "nigger" or "pakky" or "kike" or “faggot” as it should? (I use those terms to demonstrate that retard is a word of the same ilk- filled with denigration, judgement, prejudice, discrimination and hate) No, not really, because shows like yours use it so casually so often it becomes a part of our language, so disconnected from any meaning but still spreading hate and pain to those that, really, deserve far better. What do I expect the outcome to be from this letter? Realistically, maybe a polite letter from a junior assistant on CBC comedy staff saying "we appreciate your comments, and keep watching the CBC". What would I like? Maybe for the writers of your show and the stars to see it, and think about it, and what consequences their words had, and maybe they shouldn't have been, well, the insensitive assholes that they were.

Shame on you guys, really. Put yourself in the shoes of my daughter - well, maybe not literally her shoe's, she has tiny feet- but metaphorically. Her shoes and the shoes of the women you see at the mall or the guy on the subway or the cute Downs Syndrome kids you see in the Special Olympics poster or somebody's cousin or sister or granddaughter. And you'll realize it's not funny. It just hurts.

Thanks for your time. Zoe sends her love. No, this is a lie- she has no idea who you are. And yet you took the time to insult her? In truth the only TV show Zoe watches is "Hockey Night in Canada" and that's because sometimes Daddy watches it with her for a couple of minutes before she goes to bed. Like my mom and dad did with me. Go Leafs.

Best to you and yours

Gavin Ross
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It's been a week now, and so far- no response.

Zoe turns two

Zoe's birthday photos

As some of you know, Zoe just turned 2- a very big event around here. She was sick for the week before her actual birthday, so we had a small family party on the 21st (Zoe's grandad was here and got to get in on the cake!) and then a slightly larger friend party on the next Sunday.

This video is a slideshow of pictures- one per month since Zoe was born. At her one year birthday I printed out pictures by month for ages 0 -12 and stuck them on the living room wall as decorations for her party, and I continued doing it this year. As long as our wall space holds out, I plan on making this a major part of the birthday decorations- it is really nice to look back over the months/years and see where Zoe was and where she is now. So for those of you who cannot come into our living room and see the actual pictures here they are. Months 0 to 24 of Zoe Alexander Ross.

The song, by the way, is "Only you" by Joshua Radin. When Zoe was born and admitted to hospital for 3 weeks it was the only CD we had with us so we listened to it A LOT in those first three weeks. Zoe got rocked to sleep many times to these songs- good thing it was a good CD we happened to have in the car and we weren't listening to Milli Vanilli or Boney M or something like that (not that we actually would listen to Milli Vanilli or Boney M but . . . )

My rules for picking the pictures is to limit myself to one per month, it has to only have Zoe in it (mostly anyway) and as much as possible it should highlight what is going on in Zoe's life at that time. This can be a challenge, as we take a lot of pictures! But I think I did alright- that is one of the great things about doing it- it really makes me appreciate who Zoe is and what she has done.

The first picture is Zoe about 30 hours old, already extubated and with my thumb holding her hand. The next one (maybe 12 days or so?) shows just how tiny she is- my hands wrap around her chest. Then she gets home on the NG tube and then into one of her preemie outfits people gave us, looking pissed and greasy (she had cradle cap so we were told to rub olive oil on her scalp. Olive oil- good for Italian food, good for babies- who knew?) She wouldn't fit her newborn clothes for several months yet.

In August 07 we went to Scotland and England- here is Zoe contemplating Carlyse cathedral (which her Scottish ancestors sacked and partially destroyed way back when- sorry about that!). In September she started smiling- before that she had not done so and we didn't know if she ever would. She used to always stick out her tongue to smile. The two October pictures in he slideshow how she developed in terms of grabbing stuff and using her hands. In 07 it was all hand over hand, guiding her; in 08 she was all about grabbing it herself. This picture actually documents one of the first times Zoe attempted self feeding (hence the pumpkin goop on her face) It wasn't an attempt with anything particularly edible, of course, but that came later on. Incidentally, I think both pictures were taken at our friend Amanda's house in Pittsburgh.

In November we met our new 1p36 friends (including Jacoby, whose back you see) in Jacksonville for the 1p36 conference. Zoe's facial expression here is very similar to a lot of the photos to come. December we had lots of snow, which lasted a long time that year (see March). Then there were new toys for Christmas #1 and Birthday #1. In April Zoe got her glasses, and her tracking and hand eye coordination really began to improve. It was hard for Genevieve and I when she initially got her glasses - it meant admitting she was pretty profoundly visually impaired at such a young age. Although she looks adorable in her glasses, it still is sometimes painful to realize what they really mean- I'm sure the 1p families out there can understand. Now she has had them so long and they help so much she just doesn't look like herself without them on.

More solemn glasses looks, and the shirt that started out as a long dress many months before- she has many of these. Smiling, and our crazy girl who likes sleeping with the blanket over her head. This blanket was given to her in the NICU- it is a project Linus blanket and she used it every night since she was about 10 months old or so. Project Linus is a bunch of knitters ( I imagine them all as old grannies but there may be some younger ones too) that knit blankets and donate them to hospitals for infants to have a comfort item. In the course of our careers, Genevieve and I have given away hundreds of these, but now find ourselves on the receiving end. For the life of us we can't recall who gave this blanket to us- we just remember it showing up in the NICU.

Zoe's vibrating toy and her crazy hair. Bathing in the kitchen sink (still fits!) Another hospital admission and NG tube- this is Zoe on the the last day (I think) of a short stay. Another skirt/shirt. Second Christmas- Zoe was so much more into her gifts and toys. Here she is tasting her Aunt Muriel's/ Uncle Walter's/ Cousins Elaine and Zoe's kangaroo family. January self feeding (whip cream) and February's pony walker (her first attempt- she did amazingly well and far exceeded anybody's expectations. A great step we are still exploring as a family.)

Hope you enjoyed the slideshow, and the accompanying commentary. Happy Birthday, Zoe.

Love Daddy

What Zoe would look like with a mustache

Just in case you were wondering . . .

Daddy's teeth

I alluded to not working much the past three weeks in the last post, so I thought I'd explain (this is Gavin). I'm not sure if we had mentioned this before, but I had some oral surgery this week on Tuesday so I've been off recovering and eating a lot of soft foods this week. The previous week I was in hospital with Zoe (she was an inpatient on the same floor I work on) and the week before that both Genevieve and I took a bunch of time off to look after Zoe at home. So it has been a very odd three weeks, for my professional as well as my personal life.



Zoe an inpatient on my floor



While Zoe was admitted, she was inpatient on 7C, one of the units I cover professionally as a Child Life Specialist. So I knew all the staff, and was seeing kids I work with on a day to day basis all the time, while walking back and forth getting things for Zoe. And to get linens and supplies, which of course I know where they are, I'd have to ask staff. I generally try to keep my personal and professional life seperate, but since Zoe came along this has become increasingly difficult and last week it was impossible. I had families asking about how my daughter was doing, and I have to admit I struggled a little bit keeping it all seperate. There were times when I ended up doing work stuff, and there were times that I really wanted to connect with other parents on a parent to parent level, rather then a professional to parent level. There were times when I found myself doing both. It is very hard to describe how this personal/professional conflict is not only logistically difficult but gut renchingly hard at times. Not just last week but frequently at work I see situations so similar to what could occur with Zoe or that are occuring or have occured that it just feels emotionally quite overwhelming. My job is one where you have to be emotionally. . . available, or at least aware, and having Zoe and with her being so involved with the health care system it places a huge toll on my emotional reserves. Sometimes work seems too much like home and home is, well, work (like last week, where I spent a continuous 120 hours or so at "work" with Zoe as an inpatient). This last Wednesday- my usual day off home with Zoe, was the first time in a month that Zoe wasn't at the hospital for an appointment of some kind.

It really does sometimes become very hard, to both do my job well in the way I need to and to be a valued employee. Being Zoe's dad is different- it is just who I am and I have no choice but to do it with everything I have. And usually I am that way with my job as well, but it gets so difficult and emotionally exhausting on top of everything else going on. At some point I might make a posting on this topic itself - it sort of deserves it. Maybe one of these days I'll get around to making one. Anyway, onto my new teeth!

Oral surgery (doesn't actually have anything to do with 1p36 so skip it if you want to).

Here is the background to the oral surgery thing, for those of you who don't know (which would be most of you). I have had a lot of trouble with my teeth since my early 20's. I had a lot of various treatments for cancer when I was in my teens, and it seems like it really did for my teeth. No definitive explanation was ever found. One dentist thought it was the NG tube I used to put down and it causing acid reflux (which it did). It could be radiation or chemotherapy, or possibly nutritional or hormonal causes during the structural and formative development of my adult teeth. I just learned (from an article on Neanderthal man I was reading in a National Geographic in my dentists office) they can put Neanderthal teeth in a particle accelerator and "read" the development of the teeth, tracing nurtitional deficits, periods of stress, etc. Now this has never been done with my teeth- to do would involve putting my head in a particle accelerator which would, I imagine, be fatal (maybe not- I'm no physicist) but it made me wonder if my teeth just never developed properly at a structural level due to all the other stuff going on at the time. Certainly, looking back I had some poor dental hygiene practices at times; my priorities were not on my teeth as my very survival/continuation as a living person took precedence. If I could go back and change this I would, but what difference it might make I don't know. I've seen some very bad cases of dental care in the hosptials I've worked in, and they generally would improve with better hygiene and treatment. Such was not my case. Since my 20's I've been fighting a losing battle to keep what I had and make what I had functional. I have spent thousands of dollars and tried so many options; at times my dental hygiene regime has been pretty grueling and time consuming (not to mention money consuming!) For the passed four years or so I haven't had a good solution- I haven't really had functional molars for ages and I had continual absesses and cysts and swollen lymph glands and nasties like that. So the time came to finally move forward on a long term solution.

(for those of you who are squemish about dental stuff you might want to skip the next bit)

So that is the background. This week I finally did what I had been trying to avoid for so long, and I had basically all my teeth removed. They were all crowned anyway- I think I may have you only one left that was not root canalled. The crowned molars I had left (six lowers in all) had all broken and had nothing to oppose against, as I had my six top molars removed with my wisdoms about four years ago (plus my first attempt- very unsuccessful- with a partial denture). I had put this off for years, for expense, for time, for ego, and most recently for Zoe. I thought I'd have to postpone again last week, but then Zoe got released so I went ahead and got the surgery. I now have a full lower denture and a partial upper denture- my six front teeth are a bridge type crown thingy I've had for awhile and which is holding up for now. I got two implants put in my lower jaw that the lower denture will eventually lock onto. So far I am extremely happy with the results. The dentures fit great (even the lower one, even though the implants won't be hooked up for another while yet). I can't really chew on it yet, but the pain has been much less then I expected. Genevieve has been wonderful staying home and taking care of me and Zoe has been especially gentle with my face. She knew I wasn't feeling well on Tuesday and kept signing "Daddy". So cute!

So I am very relieved to finally have got this done, and to be pleased with the results. I was at the point where the teeth I had were a constant source of infection and pain, and I am sort of glad to rid of them. And it is so odd to see myself in the mirror with a full set of "teeth"- I haven't seen that in years! Damn I look good! And I am really looking forward to chewing my food again- years of grinding all my food with my front teeth makes me wonder what it will be like to have functional molars again!! Back in the Neanderthal days when you lost your molars that was it man, your life is over - feed you to the wolves, you were dead. I'm glad we live nowadays and I can get away with my "falsies"- being eaten by wolves doesn't seem very nice.

Sorry if this is a lot of detail, and not related to 1p36 stuff at all, but I just wanted to share something that had been a long time coming for me, and that I am very happy to have finally done. It was a bit painful, and very expensive, but it was past due to get done and I am happy it is. I am actually quite thrilled to finally have my "old man false teeth in a jar". It is a huge relief to have it done and to have the results be so positive. Thanks be to Genevieve and Zoe for seeing me through- they are my world.

Encouraging doctors visit yesterday

Hey all,

well, Zoe went back to the pediatrician yesterday and we got unexpected good news. Zoe's lungs now sound much better- almost as good as at baseline, according to Dr. Taylor, her wonderful pediatrician. This means Zoe doesn't have to go back for a full 10 days, when she has to go back for her monthly RSV shot (quick everyone- touch wood. Hopefully she will continue to improve).

What a roller coaster. It truly has been a bit insane these last 12 weeks or so. Thank you to everyone for their support and kind words. It has been really hard to be trying to balance work and Zoe's health and the worry of her getting worse and the knowledge of just how much worse it could get. Because really, she has been doing pretty well, if you count four antibiotics, five days in hospital, two ED visits, one allergic reaction, at least a dozen doctors appointments and twelve weeks of illness as good. We know it could get so much worse, and does for some of the 1p36 kids. Some of the kids we know have fairly severe respiratory issues, and they began around Zoe's age, so we worry about this being the start of something. But then we step back and try not to think ahead to much, lest we go insane (or maybe even more insane then we already are).

Look at that hair!!!

So this was suppose to be an encouraging post, so I'll end now on the note that Zoe is sounding good and getting back to giggly girl self. She went to school (what we call her daycare) today and yesterday and did really well. It's great (and a bit weird) to get back into a routine. As for myself, I don't know what that is like myself- I have only worked three days in the last three weeks (see the next post)- it's going to be very strange to get back to work next week!

Thanks again for your positive thoughts and comments- we do really appreciate it. Keep 'em coming!

Zoe's great grandmother

Zoe's great Grandmother (Gavin's grandma) died this weekend, at the age of 91 (I think). She had been ill a long time, so it was not unexpected, and apparently she went peacefully in her sleep. She lived in Davidson's Mains in Edinburgh until she was around 77, in the same house my dad and two aunts grew up in. The first memory I have is from the garden of that house when I was two. For the last 14 years or so she lived with my aunt Muriel, uncle Walter and cousin Zoe in Surrey, England.

We were lucky enough to get over there last year with our Zoe (or wee Zoe, as she is known to that side of the family) last year. Zoe was 6 months old at the time. My grandmother was still in somewhat good health (though rapidly declining) and she enjoyed visiting with her great grandaughter (her "bonny wee babbitty") immensely. I can't say I knew my grandma well, owing mainly to the fact that Scotland is quite a long way away from Canada, but I am very glad that she was able to meet Zoe and that they could spend some time together. It meant a lot to everyone involved, I think (though Zoe looks a little mystified, to be quite honest).

This video is, I guess, my tribute to my Grandma. She was a spunky old lady- I think there can be no argument about that. She lived a grand old life, and I'll miss just knowing she is there. I'm posting this video in the hope my family can see it, and remember how happy Grandma was to see her "wee Zoe".

The music is "Flower of Scotland"- this version by a band called Runrig. The other lady in the video is my cousin Zoe, who is only a few months younger then I am and a charming young women who was also absolutely thrilled to see "wee Zoe".

Fun fun colonoscopy stuff

This is Gavin's colonoscopy, not Zoe's. I'm clear for another 3 years, so all is good. Genevieve brought Zoe with us to the hospital and waited while I had the procedure. It was great having them wait with me and then being there when I woke up. She is such a good girl (both Zoe and Genevieve) - I'm lucky to have them both. Here's a couple of pictures of Zoe helping me wake up. It was so nice having Zoe there, though to be honest I don't remember much about it. Those drugs they give you are pretty effective! Not like the old days, I tell you.

Uncle Angus visits

Hey all,

We have had a busy time recently, so sorry for the lack of new updates. Uncle Angus (Gavin's brother) visited a couple of weeks ago. He is driving his motor bike from Calgary to Newfoundland (or as far as he gets), so hopefully he will have a good trip. Here is a picture of me enjoying some "family" time with my uncle.

While he was here he helped Daddy stain the front and back decks- we are still keeping the rest of the fence for him though on his return trip. He also helped break out Daddy's new reciprocating saw and prune (i.e. chop down) a huge shrub thing out front- Mommy, daddy and Angus all had a turn. Actually, I don't think it looks much better now, but maybe come spring?

We also just got back Monday from the 1P36 conference in Boston. Wow, that was a long drive! You can check out my friend Whitney's blog on what happened at the conference- her Daddy Nate is on top of things, man! So mommy and daddy are feeling kind of tired this week, and a little physically and emotionally worn out. Mommy is on a trip by train to Montreal this weekend with auntie Amanda (not an actual auntie, but close enough- she loves me (and mommy and daddy too, I guess) soooooo much). Anyway, they are off having wacky adventures no doubt, and daddy is here at home getting to wash my poopy diapers! Lucky Daddy.

Anyway, the conference was great. We got to see a bunch of my 1P36 friends, go swimming in the pool 3 times, see the fishes and penguins at the aquarium and lots of other fun stuff. More updates later- I will post some pictures when mommy brings the camera back from her trip.

That's all for now. I had an appointment at anesthesia clinic to get ready for my MRI in a month or so. There is some debate on getting IV access (I am a very tough stick) and safety/benefit versus risk etc so we are now waiting for one doctor to talk to another doctor then get back to us to hear if it is on. We'll see.

Love to all.

Zoe