Going to Pennsylvania

This is just a quick post before we leave for PA. We have decided to leave at 5am and hope that Zoe sleeps for most of the car ride. Zoe has been having a tough week. She has not been eating very well but is drinking out of her cup like a champ. So at least she is well hydrated. Initially we thought she caught chicken pox from daycare, but her few spots look more like a heat rash and have not spread or gotten worse since Sunday. Zoe is also cutting a new tooth, so perhaps that is the reason for her fussy mood. No fever, so we figure we will hold off going to the doctor. When Zoe is sick, we have the added stress of worrying about her getting enough calories. It is obvious that she has lost some weight this week and we are feeling nervous about Zoe's appointment on July 7th. Zoe continues to get weighed on a monthly basis and has only gained 100 grams since last November. Talk about pressure on us to get her to eat! We are trying to push those thoughts to the back of our minds, but it is hard not to worry when she is not eating much and we can see she has lost some weight. But we know the doctor can't tell us anything we don't already know- keep her hydrated, keep watching her, keep trying to feed her, etc. Also frustrating is that Zoe had finally stopped arching so much and was sitting on her own for twenty seconds at a time. This week though, Zoe is arching more than before since she is not feeling well. So, we haven't done much PT and are just focused on keeping her comfortable and eating. It is hard not to get frustrated with Zoe when she is arching out of my arms and smacking me in the face. But I remind myself that it must be even more frustrating for Zoe since she is the one who can not communicate what is wrong and does not understand why she feels this way. I am glad that both Gavin and I work in health care and feel comfortable and confident in providing her care when she is like this. Hopefully she will get some rest in the car and feel well for visiting all of our friends and family this week. It is going to be a busy week for her and we know she will be overstimulated at times. We really look forward to seeing all our friends and family so we can show Zoe off. We are just so proud of her.
We will be sure to post some pictures from Uncle Joe's wedding when we return.

in case you're wondering . . .

. . . yes, that is a brewery in the background in our profile picture. Creemore Springs brewery, in Creemore, Ontario. Cute town, and good beer. Babies first brewery tour. Don't worry though, we kept her out the free samples.

Peek-a-boo video

Today Zoe (and Genevieve too) wanted me to post this piece of video of Zoe and I playing her version of peek-a-boo. She started doing this a month or so ago. Her first attempts were using a blanket in her high chair. We have video of this too, but the quality is really poor and it's hard to see. Check it out at http://video.google.com/videoplay?docid=-546432121159693397 if you are interested (which I know you are - it is super cute even if it is a bit dark). As you can see she kind of does the whole peek-a-boo thing backwards- generally laughing and smiling when covered/not seeing and her usual neutral face/downturned mouth when she looks at you. What a weird baby.

And this is exciting why you ask? Some of you out there will know, having seem it in your kids but we love seeing Zoe do this because it reflects her increasing ability to play, interact with the world around her and indicate her enjoyment in things. This ability has really taken off in the last couple of months- now Zoe laughs at things and plays with toys and us and shows us both her pleasure and (like this morning when the yummy cereal/strawberry/bean mix I was feeding her suddenly turned to poison!) her displeasure. There's a whole cognitive/developmental piece to it too- object permenence, knowing an object still exists when out of sight blah, blah, blah, but that doesn't sound nearly as much fun as peek-a-boo.

There are a billion other cute clips we could post, but we will try and hold ourselves back (a little, at least). Zoe specifically requested this one though (through mommy) so there you go- how could I refuse?

Sorry for the abrupt ending on the clip- I'm still not happy with any of the video editing software we have on our computer. The music playing in the backgorund, by the way, is a Vancouver band I really like called The Town Pants. The songs are Dark Annie and Plastered in Paris. Just so you know.

Happy Father's Day

For Father's Day, Zoe and I made Gavin an angel food cake with whipped cream and strawberries. We took the opportunity to practice an eating skill with Zoe- sucking food off a finger. This may sound like an odd skill to practice, but Zoe does not have the instinct to just suck food off her fingers or to lick anything. At this point, Zoe will stick out her tongue to taste her toys, our shirts, the spoon she is eating off of, etc but she does not lick or suck automatically. Now that Zoe has four teeth, practicing this skills can be a bit dangerous for the adult offering his or her finger! Zoe did not enjoy sucking the whipped cream but she did enjoy eating it off the spoon. So this picture is Zoe after she enjoyed some of daddy's dessert. She did not want the cake or strawberries (usually she loves strawberries but she was having a very picky eating day). We make the whipped cream ourselves so it has very little sugar and lots of fat so we figured, go for it Zoe!
Zoe has come a very long way with eating. She is now able to eat mashed food very quickly. When Zoe is not sick and is in a good mood, we can also give her small bites of table food. Since chewing is still so much work for Zoe, we have to balance getting the calories into her and having her practice eating. So, the meal usually consists of lots of mashed and easy to eat food shovelled quickly into Zoe's mouth (if you don't go fast enough, Zoe will slap her hand down on the tray and grunt in protest meaning "Hurry up! I'm hungry!") After Zoe starts to slow down on the mashed food, we give her bites of whatever we are eating. Zoe loves it when daddy gives her his food off of his giant fork (she won't take it off her own spoon and she usually wants daddy's food, not mommy's- we love to see Zoe showing preferences!) Zoe is able to chew some foods, but it takes her a very long time and she tends to store them in her mouth. Sometimes, it will be fifteen mins after a meal has ended and Zoe is still chewing her food.
Another eating skill we are working on is getting Zoe to take a bite out of a bigger piece of food. We have found a good food for this to practice on. Zoe loves eggs. We now hard boil a few eggs to keep in the fridge. For breakfast, I scoop out the yolk and put it in Zoe's cereal bowl and then I take the egg white and cut it in half. After Zoe has chowed down on her cereal (high fat yogurt, fruit, and oatmeal) and egg yolk, I let her practice biting the egg white. The egg is nice and soft and perfect for biting. Zoe also loves to practice biting blackberries (this gets a bit messier). Zoe enjoys biting things as seen by her laughing hysterically when biting avocado (apparently avocado is really funny). At this point, Zoe is able to coordinate her tongue and lips so if a piece of food is put on her lips, she can move that food into her mouth instead of it falling off her lips.
The key with Zoe is giving her lots of time for her meals. At this point, breakfast still takes 90 minutes between the nursing and solid food. All other meals take about half that time. One of the reasons Zoe will stay in the infant/young toddler room at daycare is so the teachers can still dedicate at least 40 mins of on-on-one eating time with Zoe for every meal.
As for drinking- Zoe has decided quite suddenly that she is done with nursing. Zoe had been on nursing strikes before (when cutting teeth or when she was sick) but it has never lasted this long. After ten days of not nursing at all, Zoe suddenly decided she does like the morning nurse. This is a relief since Zoe has always been borderline dehydrated. So, Zoe continues to get that morning nurse with lots of milk. The rest of the day, Zoe drinks out of her sippy cup with the valve removed. This way, the milk spills into her mouth and she does not have to suck it out. We have tried the cup with the valve in, but Zoe just cant suck hard enough. We have also tried straws, but again, Zoe does not really suck (with nursing, I was doing a lot of compressions to put the milk into Zoe's mouth because she has never had a strong suck). Zoe can drink a couple ounces from the cup at this point, so we just have to be sure to offer her drinks every couple hours to keep her hydrated. When we talked to her dietitian from the cardiology clinic, they said that breastmilk is still the best nutrition for her. So, I am now pumping several times a day to get milk for her cup. When I am not able to get enough milk, the dietitian recommended that we start Zoe on pediasure. So, last night Zoe had her first taste of pediasure and did not really go for it. Zoe has never been a fan of sweet things, so pediasure might be hard for her. But this morning she did drink an ounce of it- hey, every ounce counts!
Wow, this is turning into a long post. I just wanted to add one more thing about eating. 1P36 kids are typically very small when they are little and some have obesity problems later on. For that reason, we are taking the time now to feed Zoe lots of vegetables, fruits, and good sources of protein. We are adding calories to her food in natural ways (avocado is very fatty, olive oil, and now pediasure). It would be easy to fall into feeding Zoe higher fat foods (junk foods, take out food, etc) that have more calories but these are empty calories. We want Zoe to get into good eating patterns and then we can take away the fat later without her noticing (switch from high-fat yogurt to low-fat, stop adding oil, etc). We are hoping that this works. It is difficult to find any research or literature on what we are doing with Zoe since 1P36 is so new. I have yet to find anyone in literature or on the listserve who successfully breastfed a child with 1P36 past the first few months. Some people were encouraged to stop breastfeeding and start supplementing. In Zoe's medical chart it says that we started breastfeeding AMA (Against Medical Advice) but all of her doctors since then have acknowledged that Zoe would not be doing so well with oral feedings if we had not insisted on nursing her. So, we can only do what we think is best for Zoe and hope that it turns out well in the end. Like any parent.
If there are any 1P36 parents reading this who want tips on preparing Zoe's food, just let us know. We make most of Zoe's food and blend it ourselves. Jarred food has a lot of water in the food and we add milk instead of water when preparing her food. Also, we have noticed that the fruit (Zoe eats a lot of fruit since she tends to get constipated due to the low muscle tone in her trunk) has a lot less fibre in the jar since they add a lot of water. It is very time consuming to make Zoe's food but we have found a way to spend an hour here and an hour there jarring our own food and then storing it in the freezer. This way, during the week it is easy to pull out food for Zoe. Also, we have found that Zoe sometimes refuses the first one, or two, or three bowls of food we prepare for her so we have to have lots of choices on hand. Again, it would be easy to give Zoe pudding or something like that after she refuses the healthy dinner. This would give her calories, but not a whole lot of nutrition. So, it is important to keep offering her healthy alternatives for dinner.

Zoe rolling over

This is a video we took of Zoe rolling over from the end of April, which makes her about 14 months old. As you can see rolling is still a lot of work for her, but she gets there!

Zoe showing off her newest tooth and smiling for the camera.

Therapies, Specialties, and Developmental Milestones

At some point we may go back and explain what has happened with Zoe for the past fifteen months, but for now, we are focusing on where Zoe is now. As we already said, one thing we found incredibly helpful as parents was other people's blogs that showed their child with 1P36 thriving and developing. So, for other parents out there, I just wanted to take a minute to say where Zoe is currently.
Zoe sees OT/PT and vision therapies on a weekly basis. Zoe sees an early intervention specialist on a monthly basis. Zoe was assessed for speech therapy and services are pending. We are fortunate enough to live in Canada where these services are free for us and are provided in our home.
In terms of medical specialists, Zoe is still followed by cardiology, nutrition, neurosurgery, orthopaedics, opthomology, audiology, ENT, and continues to have monthly weigh ins at her pediatricians office. Zoe was followed by genetics and haematology but has been discharged from those services.
We are very proud of Zoe's development and take every opportunity to brag about it. We also hope this list is helpful for parents looking for when to expect their 1P36 child to meet certain milestones. Here is a list of some of the milestones that Zoe has met:
7 weeks old- successfully breastfeeding so NG feeding tube was removed
5 months old- first responsive smiles
6 months old- started cereals and other solid foods
8 months old- consistent at batting and grabbing toys
8 months old- started using a sippy cup with the valve removed. Zoe has never been able to suck strong enough to get the milk out of a bottle (we tried every nipple out there but none worked for Zoe). So, at this point Zoe still breastfeeds and uses a cup.
9 months old- started to bear some weight on legs but mostly continues to keep legs crossed and pulled up into lap
9 months old- first coo and vocalizations (is still a very quiet baby)
10 months old- instant and consistent grabbing of toys
10 months old- reacted with fear to high pitched and loud noises
11 months old- paid attention to books when being read to
11 months old- shows interest in drinking out of mom or dad's cup
12 months old- able to bring sippy cup to her mouth consistently by self but not able to tip cup back for drinking
13 months old- able to play peek-a-boo
14 months old- consistently rolling from tummy to back
15 months old- first tooth
15 months old- able to manipulate two different objects with both hands at a time rather than playing at mid-line
15 months old- smiles at camera when we take a picture (inconsistent)
15 months old- insists on eating food off of mom or dads plate. Zoe still takes a very long time to chew so we continue to mash her food.
15 months old- rolls from back to left side
15 months old- will roll/wiggle body toward a toy that she wants
15 months old- will imitate "milk" and "all done" with hands consistently, will occasionally imitate "eat"
It is important to note for people working with or parents of 1P36 children that all of these milestones took many months of practice. Our children need a lot of repetition and practice before they are able to reach a milestone (example: we rolled Zoe for a year before she finally was able to do it on her own)
There are many skills now that we are practicing but Zoe is not yet able to do on her own.
Zoe is a very easy going and smiley child now. She laughs a lot and really enjoys being bounced or thrown in the air. Zoe continues to be on the small size- at fifteen months she weighs 15 pounds, 4 ounces and is 27.5 inches long. Zoe's head has not grown as much as her body since birth and is 15.75 inches in circumference. It is very common for 1P36 children to have small heads.

First post- an introduction

Well, it looks like Zoe has a blog. I sort of inadvertently created it while looking at how to do it/options etc. So there you are- here it is. Genevieve and I have talked about starting one for awhile, and Zoe thought it was a good idea too. So welcome to Zoe's blog.

An introduction seems in order, but first a note on the name. We hesitated using 1P36 in the name/url of the blog because we didn't want to (and don't) define Zoe exclusively on the terms of her 1P36 chromosomal deletion. On the other hand, we know how much support and encouragement we have gained from our friends wondeful blogs about their kids with 1P36 (I'll post links to them as soon as I learn how), and we wanted Zoe's blog to be accessible to new families facing a disanosis of 1P36. That way hopefully others will recieve the same sort of support we have found. So I was messing around with names/URL's and apparently committed us to this name. Hope it's okay with the my two girls (i.e. Genevieve and Zoe!)

Okay, on with the introduction. Where to start? Well, Zoe was born on February 21st, 2007. She was born at 42 weeks plus a day- 15 days over due and had to be induced. When she was finally evicted, she weighed in at 5 pounds 3 ounces (about 2353 grams). She was very little, and had a rough start. She was in the NICU for a week, then in the hospital (incidentally the hospital where both Genevieve and I work) for another couple of weeks. She was about 8 days old or so when we got the diagnosis of 1P36 Chromosomal deletion syndrome, which we had never heard of. We will write more, I am sure, about these early days, but I'd rather tell you about Zoe now, so that her introduction is who she is now, not what happened to her when she was little.

So who is Zoe now? The picture at the top of this post is one of her most recent ones. Zoe is an amazing little girl, and both Genevieve and I love her and cannot imagine life without her. She is a little crazy sometimes- she loves to be naked and to be bounced on the bed and tossed in the air. She is really starting to get the hang of movement and rolling over and manipulating objects and toys with her hands. She loves vegetables and eating daddies food (not mommies so much)off his gigantic fork, which is a little nerve wracking for us as she is also very very wiggly (though less now then when she was first born). She loves to smile and laugh and grab noses and glasses and hair. She has 4 beautiful teeth and curly hair that tends to stick out in every direction no matter how much hard we try to brush it. She is a delight, and the best baby ever- something we tell her every day.

And so begins the somewhat accidental blog of Zoe Alexander Ross. I hope you enjoy reading about her exploits, and ours. To finish this introduction I will just add one picture- the first picture of Zoe ever taken when she was just a couple of hours old. It was hard to look at in the beginning, but now when we see it we are flooded with love and awe and admiration about how far our little one has come in just 15 months or so. She is amazing.

Zoe Alexander Ross

born Feb 21, 2007