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.

IMG_2370

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!

Advertisements
Posted in Jack and Hunter | 3 Comments

Here we are!!

OK! I know it’s been a while but I am going to try and make it a point to post at least once a month and give you all updates! If I slack make sure to remind me 🙂

So, first things first! The enzyme replacement therapy for Morquio Syndrome A has been approved by the FDA!! This is not a cure but a treatment that will help reduce some of the symptoms of Morquio Syndrome like heart issues and respiratory issues. It is a weekly infusion of a synthetic version of the enzyme that the boys are missing. They will receive it once a week via IV and it is an all day event. We are in the process of getting Jack and Hunter to be able to get this but are having  a hard time with our current hospital. Their pediatric infusion room is full of children who have cancer and are getting their treatments. Very sad all the way around. But we are not giving up! We are going to keep fighting to get it there and if all else fails we can start trying in Boston (which others are already getting it there – but we do not really want to make the trek to Boston every week).

The other up date is the 4th Annual Tour for the Twins is ready to go! Click on the link below to bring up the flyer!

Tour for the Twins 2014

Other than that everything has been good! They only have a few more days of school left. In July they will go to school three days a week for extended school year, so they don’t regression on things they learned in Kindergarten. Then they will be first graders!

Like I said I will try to come on here at least once a month to give you any updates and share what we have been doing.  Here is a picture of them this past fall. We were getting our pictures done and of course they had to pet the little dog they saw 🙂

IMG_2689 (2)As I finish this post I realize that it has been four years this month that we heard the news that Jack and Hunter had Morquio Syndrome. We all have grown so much in the last four years and it is amazing how something like this can change your whole out look on life…

 

 

 

Posted in Jack and Hunter | 4 Comments

Summers done and school has just begun….

I know, I know….So in short summer has been fun! We took the boys on their first camping trip and yes we all survived! We have been of course continuing check ups and all have been good. The boys have been spending most of their summer in the audiology department this summer. We have new hearing aids that we are getting use to and in September will be getting our second set of ear tubes. Heather MacKay again out on a marvelous “Tour for the Twins” fundraiser. We double the amount of riders and doubled the amount in donations. We raised almost $4000.00. Thank you to everyone who came out and made the day for us. Our next fundraiser is going to be September 15th at Auburn Pitts in Auburn NH!

This year the boys are going to be going from 2 days of school to 4 day! They will be little tired men. They are also going to taking additional aqua therapy once a week. They are making strides and we hope to hold off any major surgery for a little bit longer.

I promise to try to make more frequent updates but as you can see we have been busy bees this summer! Thanks to you all for your continued love and support!

Posted in Jack and Hunter | Leave a comment

Appointment updates!

We have been very busy with appointments lately and I wanted to wait until we made it to a break to fill you in on some of the updates. Some of the uneventful appointments we have had was pulmonary and neurology. Both boys look good and we will do a pulmonary appointment in 6 months and neurology in 1 year.

We also visited the ENT and audiology. Both boys still have mild hearing loss but this was the first time they actually wore the head phones. So we are going to return in June to do a repeat test now that we have somewhat of a base line with them actually using the testing equipment. Hunter is also going to have a sedated ABR test when he has is next CT to test him with out any behaviors since some times he like to play games when testing.

We also went to Children’s Hospital Boston for orthopedics. We had to temporarily leave CHaD for ortho because both surgeons have left. As of right now we are going to hold off on hip reconstruction. Dr Karlin (our new ortho) believes that while the boys should have their hips done before they turn 6 he also feels that they need some time to really recover from their spinal fusions. In the mean time Hunter is going AFOs for his feet and ankles. We knew it was coming because his ankles are very stiff and he has a hard tome walking. This may help him with walking and running plus maybe some better balance. He his getting a dinosaur pattern and his sure that his new dino shoes are going to make him super fast and beat everyone in a race.

While we were in Boston we were also able to meet up with the Burtons whos youngest also has morquio. We went to the zoo and then had ice cream after. It was great to finally meet them in person and fun to see Taylor and Bella become BFFs. I look forward to seeing them again and hopefully getting together with them and another morquio family for a BBQ this summer.

 

IN the next few months we have some more appointments. We are going to doing Hunter’s one year post op CT scan, cardiology, audiology, and more ortho. We also will be going to the MPS conference in June. We also have a date for this years bike rally. I will be held on July 21st and there will be more info to come. I am also looking to plan a fundraising event at Friendly’s in Concord on May 15th for MPS awareness day. This is not set in stone yet and will let you all know more when it does.

 

Thank you all for your love and support for us!

Posted in Jack and Hunter | Leave a comment

Free!

It is official the collars are off!! This pass week Hunter received the okay.. He is looking good and we have great hope for him since Jack’s last CT scan (marking his one year post op) showed incredible bone growth. We feel great that we can finally end this chapter and move on to the next. Although it comes with great relief it also is bitter sweet as we have been working closely with the pediatric neurosurgery team for the last two years and now we will only been seeing them once to twice a year now for follow ups. We will miss them all and hope they keep in touch.

As for now we start to move more in the direction of orthopedics. The plan for now is to take the summer off and then do hip reconstruction for the boys in the fall/winter of this year. Now the only question we need to decide is to do both boys at the same time or back to back. Thank goodness for my wonderful Morquio family that I will be able to ask for advice from to help guide us in hopefully making the right choice.

The boys will plan on attending summer school and will also b e attending school 4 days week next year instead of the two they are now going.

We meet with our new ortho in March and I will keep everyone up to date!

Thank you as always with all the love and support!

Posted in Jack and Hunter | 1 Comment

Happy New Year!

We hope everyone had a wonderful Holiday season! Christmas was great here. The kids loved everything they received. Some favorites were Jack and Hunter’s Buzz and Woody talking dolls. Hunter is now completely addicted to Toys Story, watching it at least twice a day on Netflix. They also love their new trampoline! It’s a 4 foot trampoline that is enclosed and has a padded bar half way up and all the way around the enclosure so the boys can hold on and jump. It’s small enough that we can leave it inside the house so they can enjoy it year round.

 

 

 

 

 

 

 

On New Years Eve Matt and I we able to go out with a gift we received from my Father to see Recycled Percussion at the Palace Theater in Manchester. They are from our home towns and it is great to see how they have come along. From being a finalist on America’s Got Talent and now a headliner at the Tropicana in Las Vegas. If you ever get the chance to see them they are awesome! When we returned home we made Taylor stay up to see the ball drop. As soon as she saw it she was asleep.

Hunter has an eye appointment today. We hope he will do the eye chart so we won’t have to dilate him and fight with him. Then Jack has his one year post surgery CT scan on the 26th. Exactly one year after his surgery. We of course hope for continued good new on that.

Thanks as always for the continued love and support!

 

 

 

 

 

Posted in Jack and Hunter | 1 Comment

Halos are finished and moving on

Sorry for such a long delay in updates. Lots to go over and such little time. Since my last update Jack has been able to come out of his collar for good and is making wonderful progress. He is currently scheduled for his 1 year post op CT scan. How time flies. I can not believe it has already been a year since I heard the news that Jack was going to have to have a repeat surgery. But since then the second fusion has been successful and Jack has been making giant strides in all aspects. Hunter was also able to have his halo removed at the six month point. The last several weeks of Hunter having his halo seemed like years and we all were tired. Our family had to deal with halos and everything that comes along with it for almost a year and I think I can speak for everyone when I say that we were all done. But Hunter’s second fusion, like Jack’s, also a success and is currently back in his neck collar till the end of February.

With all that was happening with the neurosurgery we had to put orthopedics on the back burner until this all the neck problems were taken care off. This past week was all ortho for us. On Wednesday we went up with Dr Cook to talk hips and backs. With a sad heart we have to say good bye to Dr Cook as he is leaving DHMC for another opportunity. But before he leaves he is making sure that we are passed over to the right hands. On Thursday we met our new Orthopedic Dr Moen who at first sight made the best impression on me. She came into our room with all of Jack and Hunter’s history, what seemed like, memorized and ready to take on their challenges with open arms. We are so very excited to be working with her. With the quick discussion that we had after looking at the boys’ x-rays we decided to hold off on hip surgery for the boys until the end 2012. We need to give them and us a little breather and give the boys some time to be 4 year olds.

Before I close off I want to thank the Morin family for coordinating and hosting the soccer tournament for the boys and us. We were so sorry we had to miss it as Matt and I had to take Hunter up to DHMC because of some halo troubles. The tournament was a huge success and we are looking forward to the next one!

Thank you to everyone for your continued love and support.

Posted in Jack and Hunter | 1 Comment