Summer fun, school, and ERT

IMG_2268Jack and Hunter have had a great summer! We started out summer with a camping trip and our site was right on the lake! We had our own private beach access and the kids were able to enjoy some fishing! This was the first time Jack and Hunter went fishing and they had a blast. Even though Daddy did the casting when a fish was on Jack and Hunter wanted got to reel it in. They are still not ready to hold the line for a picture as the fish is still flapping!

During the summer the boys also attended what is called extended school year or ESY. During this time the boys go to school half days, four days a week, and for about 4 weeks. It is offered to students who the school feels could benefit from having  little reminders of what they learned the year prior and do not forget and regress before the next year. Which this year is a big year for Jack and Hunter as they will be going into first grade and doing full days. I am sure they will be extra tired and I just hope they make it though the day without falling asleep.

We also held our fourth annual Tour for the Twins! Again it was a great event with a live band, the hot dog eating contest, and fun for the kids. Even though the bike crowd was smaller this year than in past years we were still able to raise over $3000!! This will be so helpful for the little things that insurance does not pay for. We are now planning to host our next event, Toss for the Twins! This a fun, family friendly, and casual horseshoe tournament and silent action. The event is planned for September 13th. Click the link to see the flyer for more information Toss for the Twins 2014. This year we even have family (my father’s cousin Don ) traveling up from Florida for the event!

After all the craziness of summer school and the Tour we went to CHaD for a normal IMG_2335before school check up with audiology and ENT. This appoint was an early appointment so we decided to take the kids to the Montshire Museum in VT. What a fun great place! There they had SUE the largest and best preserved skeleton of a T-rex! They also had a little water fall, splash area that the kids took full advantage of.

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Hunter was so tired that he was sleeping before we even got out of the parking lot. Of course Matt wore of one his Tour for the Twins shirts and on the back is this web site. Later that night I checked my email and we had received a donation.  They said they saw us at the museum and remembered the website. Came here to learn about Jack and Hunter and were very generous with a donation! Thank you to Chris and Heidi from Community Health Counseling!!

Now that summer is coming to a close the fun is still not over! Taylor’s 8th birthday is in a couple weeks, we are planning on going to the fair, the Toss, more camping, and we heard great news about the ERT. DHMC and CHaD are in the final stages of setting up Jack and Hunter to start receiving their ERT infusions! No start date yet but we are looking at starting with in the next month or so. This is going to be a very scary process for the boys. They will both be receiving mediports to help with infusions instead of receiving it through intravenous. Plus the infusions themselves can start out as a full day process as the doctors want to make sure they start slow so the body can become accustom to having this enzyme as well as to watch and see if there are side effects. Hopefully everything will go smoothly and we will eventually be able to move from hospital infusions to home infusions within a year of starting. Again this therapy is not a cure but a treatment that has been shown to help with cardiovascular, respiratory, and skeletomuscular problems that comes along with morquio syndrome.

That is all the fun and exciting news of the summer so far. The boys start school in less then a week so with all that is new and crazy it that we are focusing on right now 🙂

Thank you all for your continued love and support for Jack and Hunter!

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About Alison

Mother of twin boys whom both have morquio syndrome
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3 Responses to Summer fun, school, and ERT

  1. Don Boisvert says:

    Well thank you Ally for the mention in your blog, I found out about it from my sister Patti. I am looking forward to seeing you and the family next week.

  2. Heather MacKay says:

    Thanks so much for writing this update! It was great to hear about the summer, we didn’t even know about half of these fun things that the family has gotten to do recently. The photos are just beautiful and so is the write-up. Keep up the good work, Mom & Dad! We will see you at Miss Taylor’s party and The Toss. Love, Auntie Heather, Uncle Jeff, & Cousin Josie. xoxo

  3. Sally and John Anderson says:

    What a beautiful summary of the summer. I have said it before but can’t help to say it again, that you are an amazing family and an inspiration to all of us. The Tour for the Twins was awesome and we really enjoyed it. I’m glad it went well for you also. We will be at the Toss for the Twins and will bring something for the silent auction, although, not sure what. I guess it will be a surprise. The poster for it is beautiful. So glad the boys will be able to get that treatment. Praying everyday for good results on that too. They will do well in first grade. I think it is harder on the parents then the kids when that day comes. I’m so happy you had a good summer and was able to go camping and fishing. You deserve that. Love to you all. ~Aunt Sally and Uncle John

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