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What's New In Jacob's World? 
Matthew, Noah, & Jacob at Camp Prov - Summer 2008
Welcome to Jacob Irish's Web Page. Jacob was diagnosed with MPS1 - Hurler Syndrome in December 2001 and underwent an unrelated umbilical cord blood transplant at Duke University Hospital in May 2002 as treatment for his disease. He has had several other surgeries due to his disease including VP shunt, tonsil & adnoid removal, multiple PE tubes, hernia repair, carpal tunnel release, posterior spinal fusion, and bilateral knee stapling. There will more than likely be more surgeries to come, particularly in the orthopedic area. Jacob is a remarkably happy 7 year old who doesn't allow any of his medical issues to cause him any problems. Please feel free to sign Jacob's guestbook...we'd love to hear from you!
'Every blade of grass has its Angel that bends over it and whispers, "Grow, grow."'
~The Talmud
Journal
Tuesday, September 16, 2008 10:56 PM PDT Once again I have let Jake's website go! I start to get gentle reminders from friends and family and know it's time to get a new post up here!
We had a very fun and busy Summer. Our wonderful friends the Wigglesworth's came and spent some time with us at the end of June. We attended the International MPS Symposium in Vancouver, BC with them and had an absolutely amazing time. Jacob was literally 'adopted' by the UK MPS Society and they generously gave us the use of one of their amazing caregivers, Beth, who took care of Jake the entire time we were there. Jacob is now an honorary Brit and we are hoping that Beth will be at Disney World in December 2009 as well. Noah fell in love with his caregiver in the nursery, Michele, and I think she fell in love with him too. And, Matt was such a big boy with his group from the Camp Canada program...making friends and going on outings. Wonderful Beth and the UK MPS Society even took Matthew on the final day so he could spend time with Jake swimming in Stanley Park. Having the boys all taken care of freed Steve and I up to attend the conference and really gather some interesting and cutting edge information on MPS disorders. We also were able to socialize with many of our MPS friends from around the world. It was truly a global experience.
We went camping to Ocean Shores and eastern Washington. The boys attended Camp Prov which they always love. Matthew attended golf camp at Harbour Pointe (golf is a passion of his). Jacob turned 8 at the end of July and Matt turned 7 at the end of August. Jacob and I ended the Summer with a trip to Duke for his 6 year post-transplant check up (more on that in a minute). While Jake and I were in North Carolina Steve worked, Noah spent time with both sets of grandparents and Matthew went camping with his good buddy Daniel, his mom, and brother.
Jacob was such a big boy traveling alone with his mommy. I was incredibly relieved. He handled 9 hours each way on airplanes and in airports like a champ and I was shocked with how well he tolerated being poked and prodded at Duke. I was truly impressed. He got through his ECHO and EMG un-sedated and even tolerated 6 HOURS of developmental testing with very little resistance. I can honestly say that Jake is growing up. He may not be developmentally appropriate for an 8 year old but he is certainly doing the best he can. Most of Jake's test results came back good. We came home with one minor issue and one major issue. Minor issue is his esotropia is worse (this is his 'lazy' eye(s)). The eye doctor understands that we can't keep glasses on him so we are going to try some eye drops to see if they may help. The next step is Botox...it figures my child will get Botox before me! We have an appt. with a local eye surgeon in mid-October to monitor the drops and possible Botox injections.
The major issue is the doctors now believe we are putting Jake at risk for paralysis if we don't get his c-spine operated on soon. So..........I have spent the past couple of weeks trying to figure out where and who is going to do this procedure. I am hopeful that we have a team in Seattle that is able and willing to do it although the complex spine surgeon on staff at Children's is new and I have yet to meet him so I am working on getting an appt. set up with him. Thankfully, we have a connection in Seattle who is very knowledgeable about Hurler Syndrome and is willing to assist us in this difficult decision. We did not want to have to do this surgery as it is just a scary procedure but we are going to have to. My understanding is Jake will spend at least one night in the PICU, and a week in-patient at either Harborview or Children's and then come home in a halo (external bracing system screwed into his skull) for a minimum of 6 weeks but possibly longer. When I have more details on all of this I will be sure to post them here.
Jacob has been back to school now for 2 weeks and things are going well. He loves going to school and is very happy to be back in the routine. He is in a general ed 2nd grade classroom with a one-to-one aide to help support and transition him through his day. He is with the same kids from his 1st grade class as they and their teacher looped to 2nd grade. Mrs. Strittmatter is a kind, caring teacher for Jake which makes things easy. He also is able to go to his special ed teacher, Mrs. Stringer, for academics which helps him to not get frustrated. The really cool thing is that Matthew is in the 2nd grade classroom on the other side of the wall and has our awesome neighbor, Mrs. Yarnell, as his teacher. He and Jake are able to interact during the day because their teachers like to combine their classes when they can. I really couldn't ask for a better scenario for my boys! I will be meeting with Jake's teachers tomorrow to iron out some of the details but once we do that all should be well.
That is the latest Jacob news. I am going to try to get some new pictures up as well. Thank you for continuing to check in on our family.
Love ~ Melanie, Steve, Jacob, Matthew, & Noah
Read Journal History
Hospital Information: Home
Links: http://cota.org Donations for Jacob's on-going medical care can be made to Cota for Jacob I.
http://www.mpssociety.org This is the official site to learn more about Jacob's syndrome and other MPS disorders.
http://www.cancer.duke.edu/PBMT Information on Duke's Transplant program.
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