We're Back!

A Great Trip

We had a fantastic time away. It was great to see all the other families at conference. Check out Whitney's blog (on the right) to see summaries of some of the presentations or Alayna's blog to see pictures of most of the kids. There is a cute one of Zoe.

After conference we rented a car and went to the Arches National Park. It was gorgeous. And Zoe did so well despite the warm and sunny weather. She was drinking water like a champ.

We ended the trip with a 3 day train ride from Salt Lake City to Buffalo. Zoe loved the train and kept signing "train." When the train made stops, Zoe walked around on the platform. Initially she had a hard time not trying to throw herself under the train but she quickly learned to listen. We were very impressed that just by saying (while signing) "no yellow line" Zoe would immediately stop and go the other direction. She really does listen well, especially for a 3 year old!

Photos To Come

We have tons of photos (over 300!) to sort through and then we will post some. It really was a great trip.

Little Cow-Girl

One thing I wanted to comment on was our discovery of Zoe's love of country music! While driving the to Arches we got stuck in traffic. Zoe was getting fussy in the back so we tried finding some music on the radio. When we stopped on the country station, Zoe immediately stopped crying and was quiet. As soon as the song ended, she would fuss until we found another country song. And not just any country- she didn't want any modern, not so country sounding music. She wanted good old fashioned "yee haw" twangy country. It was hilarious!

Just Too Excited!

Gavin's dad came for a visit the day after we got back and Zoe was beside herself with excitement to see him. He has grown his beard out and Zoe is just loving it. It was great to see her recognize him and get so excited.

To add to the excitement- today is the first day back at school! Zoe had a bit of a restless night and we think it was because she was so excited about school. She was laughing, smiling, and signing school as soon as I got her up this morning.

Zoe was very restless in the car and complaining (apparently I was taking too long to get to school!) As soon as I put Zoe in her walker, she raced into her school room. Some of her friends came over to get kisses and hugs and ask her how her break was. Zoe walked all over the room touching everything while smiling and laughing to herself. It was very cute. And great to see just how much she really does love school.

Abbie W. tries out Zoe's pony

Hi all,

at the conference our friend Abbie (well, maybe more Abbie's mom Kim) wanted to try out Zoe's walker. So here she is, giving it her best (it was the end of a long day and it was her first time in it- you can see how much it wore her out!) Kim asked us to post the video so she could show it to her physiotherpaist with the hope of getting Abbie a similar walker- maybe next year at conference Zoe and Abbie can chase each other around!

(FYI, the song is "These Boots are made for Walking' by Nancy Sinatra :)

We're Home!

We're Home!

We have a busy week with lots of appointments for Zoe, so we won't get around to posting pics and info about our trip for a few days. One of our first things we want to post is the video of Abbie in Zoe's walker so Kim can show it to her PT. We are working on it Kim and will have that up and running soon!

Until then, check out Alayna's blog for great pictures of most of the kids. Angie did a great job getting individual pictures of a lot of the kids (I have to say, that Zoe kid is a real cutie). Unfortunately, our camera was out of batteries, so we did not get very many pictures at the conference. For info about the speakers, go to Whitney's blog. Nate did an awesome job of summarizing all the speakers so the people who could not be at conference still get all the info. Thank you both for being so on top of documenting another great conference!

Zoe's Tea Party Total

Zoe raised $508 Canadian/ $459 US!!!!!!!

We were excited to raise so much so quickly. We realize we did not give people very much time this year to contribute due to dealing with Zoe's lung issues right before the trip. But thank you, thank you, thank you to those that did. And for those that didn't- don't worry there is always next year!

Zoe's Appointments

Zoe saw opthomolgy yesterday. All is the same as three months ago. Her eye dryness is not getting any worse but not getting better. So the plan is still to put in tear duct plugs in November when she is already asleep for her MRI. Her regular eye doctor is not available at that time but will have another doctor do the surgery for him. Gavin met the other doctor yesterday and said he was nice enough so we feel comfortable with this plan. This is not a complex surgery so it should go smoothly in November.

Zoe also saw her pediatrician yesterday for some ongoing issues (I am not going to go into detail until we get some test results- it is no use speculating about what could be with Zoe, we are far too busy with what actually is to focus on what ifs). Great news is that Zoe has gained a little more in height again so that means she has gained a whole inch in the last 6 months! She also gained a few ounces while we were away so she is up to 19 pounds, 3 ounces! What a fatty! Other great news is that Zoe stayed well the entire trip!!!! This made the trip so much easier and we had such a great time. We could tell her pediatrician was so happy to see Zoe well yesterday and to hear she stayed well for the past three weeks. Even more great news- Zoe's lungs sounded great and clear!

Zoe sees dentistry for the first time this morning and then has to get some blood tests and a chest xray to check on a few things that have been going on. Unfortunately, I can't be there with her since I am having some health issues of my own and had to see my own doctor this morning. All is fine with me. I just get to look forward to yet another pelvic ultrasound. Yippee!

I wish I could be there with Zoe and Gavin this morning since I know that it will be upsetting for Zoe to have her teeth looked at and cleaned. And she hates going into the plastic tube that they use to stabilize her for the chest xray. I just hope that they are able to get her blood since she continues to be a very challenging stick. We promised her we will take her swimming if she gets home in enough time before she has OT this afternoon. For now, I am supposed to be resting. So that is what I am going to do. Well that and pull out Zoe's next size in clothes. She has gone up a whole size in the last few weeks! We want to make sure she has a cute outfit to wear for her first day of "big girl" school on Thursday. Can you believe she starts Preschool on Thursday...where did my baby go?

Zoe's Tea Party

So far Zoe has raised $215 Canadian/ $198 U.S. !!!!!!!!!!

(I love that the Canadian dollar is doing so well since we are about to spend 2 1/2 weeks there- better exchange rate here we come!)

Thanks to everyone who has contributed so far!!!!!!!

If you still want to donate- don't worry, there is still plenty of time! Conference starts this Friday.

Don't have money this year? No worries- we will probably be running the fund raiser again next year.

Don't have money this year or next? Still no worries- if you are reading this blog, then you are already supporting a child with 1p36!

Pictures from 2nd Annual 1P36 Conference in Boston, MA

Sequoya playing with Zoe's FP rings. These were a big hit at conference. It was interesting to see how the kids played with the rings. All of the kids insisted on putting the smallest ring on first and then stacking the bigger rings on top of it.

Amaya and Abby

Amaya and Emma

Nate, Melanie, and Whitney riding the T on the way to the aquarium. Whitney kept getting so excited, she would clap her hands.

Elisha, Sequoya, and Carl. Someone on the train recognized that our kids looked alike and asked us if we were going to a family reunion.

Kim and Amaya on the T. Amaya kept getting so excited she would flap her hands.

Genevieve and Zoe looking at the Jellies at the Boston Aquarium. Zoe did not pay much attention to most of the fish or the penguins since there was not a lot of contrasting colours. She did, however, love the jelly fish and kept trying to grab them.

These are just some of our many pictures taken this year at conference. We took some great footage of Zoe playing with the other kids, but unfortunately it turned out too dark since we took the video on our still camera. We are really glad we got to go again this year. We enjoyed seeing old friends as well as meeting new families. As I mentioned before, going to conference is a bit emotional since it brings forward the reality of what we will be facing with Zoe. However, the reality of the families we have met has been much less bleak than the reality we read in the articles when Zoe was first diagnosed. And we have learned so much from the other families on the list serve. So, we feel very lucky to have this support. If you want a run down of the conference speakers, check out Whitney's blog- the link is on the right. We look forward to going to conference again next year. We have decided that going to conference every year will be one of our family vacations. Although it is difficult at times to get that dose of reality at conference, it is so important for us to keep up with other families going through the same things as we are. There is such a bond between the 1P36 families since we are all in this together. We invite any of our family and friends to join us next year (or if you can't make it next year, you are always welcome) in Indianapolis the second weekend in August.

Bonjour Montreal!

Inspired by my sister-in-law, Jennifer, who goes away two weeks a year without my brother or their four children, I decided to celebrate Zoe weaning herself by going to Montreal with my friend Amanda. Anyone who knows what a challenge it was (for me and Zoe) to breastfeed will agree that I definitely deserved this trip. (If there is a 1P mom reading this and you want tips on breastfeeding your child, please feel free to ask. I did not find any helpful literature and I had only met one other mom who was able to breastfeed her 1P36 child and she reported that her child nursed much like her other children and therefore did not have the issues that Zoe did with feeding).

This was the first time I was ever away from Zoe for more than ten hours. I wasn't sure if I was going to break down crying, but I have to say I ended up having an awesome time. It was so nice to walk around the city with just a tiny purse and be able to do whatever I wanted. Amanda (being the great friend that she is) was up for anything so we just did a lot of walking around since it was such a gorgeous weekend. I did think of Zoe a lot during the weekend (especially when we got completely lost in the woods and I wondered if we would ever find our way out so I could see my baby again!), but I was able to enjoy my time away. Although I felt just as tired physically when I returned, I felt renewed mentally. I think in a lot of ways, Gavin and I are both so fatigued emotionally/mentally more than physically. (Although we are pretty tired physically too these days!) Our trip to Boston for the 1P36 conference was wonderful, but there is an emotional piece to seeing the other kids too. It is wonderful to see how well some of the kids are doing but it can be tough to be reminded about how far we have to go and what Zoe's future may be like. It was great to see everyone though, and as soon as we finish going through the pictures, we are going to post of few on the blog. 1P36 families are sharing pictures on the listserve as well.